Question:

On Tue,  6 Apr 2004 15:28:11 +0000 (UTC), Anonymous Sender – Hide quoted text — Show quoted text -<anonym…@remailer.metacolo.com

wrote: It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward. Any source that seeks to manipulate what people see, think and do should be treated with suspicion. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. We hope one day that Russ will find the inclination to help IgAN sufferers again as he has done to great effect in the past. Much of the information here over the next few weeks you will NOT find at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk. Check it out yourselves and compare notes.            —————————————- What is IgA Nephropathy Diagnosis The presence of blood and/or protein in the urine may suggest a diagnosis of IgAN. Some kidney specialists may also use microscopic examinations of urine and red blood cell casts to assist in their diagnosis. However, to confirm a diagnosis for IgAN, it is necessary to remove a small piece of tissue from the kidney (renal biopsy) and examine it microscopically for the presence of the characteristic IgA deposits in the glomeruli. There are a considerable number of glomerule diseases that have similar symptoms to IgAN. Some are more readily treated than IgAN so a good diagnosis can be important. Causes The causes of IgA Nephropathy are not known. The disease seems to cluster in certain families and in certain areas of the world. It is rare in blacks. These facts suggest that genetic influences may play a role in the development of the disease. IgA nephropathy is associated with major histocompatibility HLA and certain other genetic markers; HLA-DR4 is detectable in about 50% of patients. There is a building body of evidence that it is an auto immune or immune complex disease. As an autoimmune disease it may be related to a number of other autoimmune disorders. Treatment Efforts to slow the progression of kidney damage have until recently had limited success. The most common and perhaps the most important treatment for all kidney problems is control of associated hypertension (high blood pressure). High blood pressure is a disease of considerable consequence to the kidney. If you suffer from it you need to work to ameliorate the condition and its wide ranging effects. Treatments from dietary controls to more vigorous drug intervention are effective to varying degrees in controlling hypertension which in turn can help to preserve kidney function. Treating high blood pressure is a task you can take an active role in with help from your medical advisors. There are a number of nutritional based supplements that seem to assist in treating high blood pressure these range from herbal remedies to simply reducing salt intake (if you are salt intolerant as many BP patients are.) Buying a blood pressure measuring device and regularly measuring your blood pressure will tell you a lot about how your own lifestyle and habits effect your blood pressure. Recent studies have shown that fish oil supplements (12 – 1 gm capsules per day containing EPA-180mg DHA 120mg) help to slow the loss of kidney function due to IgA disease, sometimes in a dramatic fashion. Limiting the amount of protein in the diet of kidney patients has been prescribed but research shows this is of limited value. For patients who progress to kidney failure, required treatment will consist of dialysis or a kidney transplant. The success rate of transplants is good in IgA patients. Even though the IgA deposits reappear in the transplanted kidney in about half the patients within one year after the operation, the signs and symptoms of the disease remain mild. Loss of a transplanted kidney to recurrent IgA Nephropathy is uncommon. The milder form of the disease seen after transplantation may be due to the use of immunosuppresant anti- rejection drugs such as cyclosporine and mycofenalate mofetil, this latter drug is prescribed in some cases before renal failure to good effect. Outlook About 20-40 percent of IgAN patients develop end stage kidney failure within 20 years after the disease becomes apparent. Those patients who have an increased level of creatinine in their blood at the time of their diagnosis are more likely to develop chronic kidney failure. It is harder to predict which of the patients who have normal levels of creatinine at the time of diagnosis will develop kidney failure. In general, a poorer prognosis is expected for those patients who have high blood pressure, a loss of more than 2 grams of protein a day in their urine, and a significant amount of damage (especially with "crescents") present in their biopsy specimen. Renal Biopsy The renal biopsy is the most accurate measure for determining the nature and stage of a renal pathologic condition. It involves the removal of kidney tissue for microscopic examination, conducted to establish the diagnosis of a renal disorder and to aid in determining the stage of the disease, the appropriate therapy, and the prognosis. An open biopsy involves an incision, permits better visualization of the kidney, and carries a lower risk of hemorrhage; a closed or needle biopsy performed by aspirating a specimen of tissue with a needle requires a shorter period of recovery and is less likely to cause infection. Before the biopsy, the procedure is explained and the patient is medically evaluated and tested for bleeding or coagulation time. The patient’s blood is usually typed and cross-matched with two units of donor blood that are held for a possible transfusion until there is no threat of bleeding after the procedure. An open biopsy (an increasing rare procedure) is generally carried out in the operating room, but the standard needle biopsy may be performed in the radiology department or in the patient’s room. The location of the kidney, determined by a plain ultrasound, x-ray film, dye contrast study, or fluoroscopic examination, is marked on the patient’s skin in ink for a needle biopsy. The patient is then placed prone over a sandbag and soft pillow with the body bent at the level of the diaphragm, the shoulders on the bed, and the spine in straight alignment. A local anesthetic is injected, and the physician inserts the biopsy needle in the lower pole of the kidney, because this area contains the smallest number of large renal vessels. The needle is quickly withdrawn, and, after pressure is applied to the site for 20 minutes, a pressure bandage is applied; the patient is turned and kept supine and motionless for the next 4 hours. The dressing, blood pressure, and pulse are checked every 15 to 60 minutes for 2 hours, the temperature every 4 hours for up to 24 hours; excessive drainage, decreased blood pressure, tachycardia, or elevated temperature is reported to the physician. Fluids are forced to the maximum allotted for the patient’s condition; the amount and character of urinary output are noted, and the physician is informed if hematuria occurs. The patient is kept in bed for at least 24 hours and is cautioned not to lift any heavy objects for 10 days. In the needle biopsy performed on me the procedure took about an hour one morning and I spent overnight in the hospital. The next day I was only a little tender in the area and this tenderness lasted for several days. Some medical clinics perform kidney biopsy as an outpatient procedure with the patient released a few hours after the procedure. A second more scholarly paper on what is IgA Glomerulnephritis Historical Background on Henoch-Schonlein Purpura and IgA Nephropathy Prepared especially for the IgAN Home Page by: J. Charles Jennette, M.D. Director, Nephropathology Laboratory Professor of Pathology and Laboratory Medicine Professor of Medicine University of North Carolina School of Medicine Chapel Hill, NC 27599-7525 IgA nephropathy (IgAN) and Henoch-Schonlein purpura (HSP) are both caused by deposition of large amounts of IgA ( a particular type of antibody) in small blood vessel walls. This results in inflammation, which involves attack on the vessels by white blood cells. In patients with IgA nephropathy (nephro=kidney, pathy=disease) this injury is confined to the small vessels within the filtering structures of the kidney (glomeruli) resulting in glomerulonephritis (glomerulo=glomerulus, itis=inflammation); whereas in patients with Henoch-Schonlein purpura the injury is present in many vessels throughout the body resulting in widespread vasculitis (vasculo=vessel, itis=inflammation). The relatedness of IgA nephropathy and Henoch-Schonlein purpura was not recognized until the late 20th century when the vascular IgA deposits were first detected. Purpura (which means purple spots on the skin) is a particular type of rash that is caused by small spots of hemorrhage from small vessels in the skin. There are many causes of purpura, one category of which is inflammation of vessels (vasculitis). Henoch-Schonlein purpura is one of many types of vasculitis. Purpura that is caused by vasculitis usually occurs predominantly on the legs and buttocks; and the purple spots are slightly raised so that they can be felt (palpated) when you rub your finger over them (this is therefore called palpable purpura). In 1837, Johann Schonlein, a

… read more »

Response:

It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward. Any source that seeks to manipulate what people see, think and do should be treated with suspicion. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. We hope one day that Russ will find the inclination to help IgAN sufferers again as he has done to great effect in the past. Much of the information here over the next few weeks you will NOT find at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk. Check it out yourselves and compare notes.             —————————————- What is IgA Nephropathy Diagnosis The presence of blood and/or protein in the urine may suggest a diagnosis of IgAN. Some kidney specialists may also use microscopic examinations of urine and red blood cell casts to assist in their diagnosis. However, to confirm a diagnosis for IgAN, it is necessary to remove a small piece of tissue from the kidney (renal biopsy) and examine it microscopically for the presence of the characteristic IgA deposits in the glomeruli. There are a considerable number of glomerule diseases that have similar symptoms to IgAN. Some are more readily treated than IgAN so a good diagnosis can be important. Causes The causes of IgA Nephropathy are not known. The disease seems to cluster in certain families and in certain areas of the world. It is rare in blacks. These facts suggest that genetic influences may play a role in the development of the disease. IgA nephropathy is associated with major histocompatibility HLA and certain other genetic markers; HLA-DR4 is detectable in about 50% of patients. There is a building body of evidence that it is an auto immune or immune complex disease. As an autoimmune disease it may be related to a number of other autoimmune disorders. Treatment Efforts to slow the progression of kidney damage have until recently had limited success. The most common and perhaps the most important treatment for all kidney problems is control of associated hypertension (high blood pressure). High blood pressure is a disease of considerable consequence to the kidney. If you suffer from it you need to work to ameliorate the condition and its wide ranging effects. Treatments from dietary controls to more vigorous drug intervention are effective to varying degrees in controlling hypertension which in turn can help to preserve kidney function. Treating high blood pressure is a task you can take an active role in with help from your medical advisors. There are a number of nutritional based supplements that seem to assist in treating high blood pressure these range from herbal remedies to simply reducing salt intake (if you are salt intolerant as many BP patients are.) Buying a blood pressure measuring device and regularly measuring your blood pressure will tell you a lot about how your own lifestyle and habits effect your blood pressure. Recent studies have shown that fish oil supplements (12 – 1 gm capsules per day containing EPA-180mg DHA 120mg) help to slow the loss of kidney function due to IgA disease, sometimes in a dramatic fashion. Limiting the amount of protein in the diet of kidney patients has been prescribed but research shows this is of limited value. For patients who progress to kidney failure, required treatment will consist of dialysis or a kidney transplant. The success rate of transplants is good in IgA patients. Even though the IgA deposits reappear in the transplanted kidney in about half the patients within one year after the operation, the signs and symptoms of the disease remain mild. Loss of a transplanted kidney to recurrent IgA Nephropathy is uncommon. The milder form of the disease seen after transplantation may be due to the use of immunosuppresant anti- rejection drugs such as cyclosporine and mycofenalate mofetil, this latter drug is prescribed in some cases before renal failure to good effect. Outlook About 20-40 percent of IgAN patients develop end stage kidney failure within 20 years after the disease becomes apparent. Those patients who have an increased level of creatinine in their blood at the time of their diagnosis are more likely to develop chronic kidney failure. It is harder to predict which of the patients who have normal levels of creatinine at the time of diagnosis will develop kidney failure. In general, a poorer prognosis is expected for those patients who have high blood pressure, a loss of more than 2 grams of protein a day in their urine, and a significant amount of damage (especially with "crescents") present in their biopsy specimen. Renal Biopsy The renal biopsy is the most accurate measure for determining the nature and stage of a renal pathologic condition. It involves the removal of kidney tissue for microscopic examination, conducted to establish the diagnosis of a renal disorder and to aid in determining the stage of the disease, the appropriate therapy, and the prognosis. An open biopsy involves an incision, permits better visualization of the kidney, and carries a lower risk of hemorrhage; a closed or needle biopsy performed by aspirating a specimen of tissue with a needle requires a shorter period of recovery and is less likely to cause infection. Before the biopsy, the procedure is explained and the patient is medically evaluated and tested for bleeding or coagulation time. The patient’s blood is usually typed and cross-matched with two units of donor blood that are held for a possible transfusion until there is no threat of bleeding after the procedure. An open biopsy (an increasing rare procedure) is generally carried out in the operating room, but the standard needle biopsy may be performed in the radiology department or in the patient’s room. The location of the kidney, determined by a plain ultrasound, x-ray film, dye contrast study, or fluoroscopic examination, is marked on the patient’s skin in ink for a needle biopsy. The patient is then placed prone over a sandbag and soft pillow with the body bent at the level of the diaphragm, the shoulders on the bed, and the spine in straight alignment. A local anesthetic is injected, and the physician inserts the biopsy needle in the lower pole of the kidney, because this area contains the smallest number of large renal vessels. The needle is quickly withdrawn, and, after pressure is applied to the site for 20 minutes, a pressure bandage is applied; the patient is turned and kept supine and motionless for the next 4 hours. The dressing, blood pressure, and pulse are checked every 15 to 60 minutes for 2 hours, the temperature every 4 hours for up to 24 hours; excessive drainage, decreased blood pressure, tachycardia, or elevated temperature is reported to the physician. Fluids are forced to the maximum allotted for the patient’s condition; the amount and character of urinary output are noted, and the physician is informed if hematuria occurs. The patient is kept in bed for at least 24 hours and is cautioned not to lift any heavy objects for 10 days. In the needle biopsy performed on me the procedure took about an hour one morning and I spent overnight in the hospital. The next day I was only a little tender in the area and this tenderness lasted for several days. Some medical clinics perform kidney biopsy as an outpatient procedure with the patient released a few hours after the procedure. A second more scholarly paper on what is IgA Glomerulnephritis Historical Background on Henoch-Schonlein Purpura and IgA Nephropathy Prepared especially for the IgAN Home Page by: J. Charles Jennette, M.D. Director, Nephropathology Laboratory Professor of Pathology and Laboratory Medicine Professor of Medicine University of North Carolina School of Medicine Chapel Hill, NC 27599-7525 IgA nephropathy (IgAN) and Henoch-Schonlein purpura (HSP) are both caused by deposition of large amounts of IgA ( a particular type of antibody) in small blood vessel walls. This results in inflammation, which involves attack on the vessels by white blood cells. In patients with IgA nephropathy (nephro=kidney, pathy=disease) this injury is confined to the small vessels within the filtering structures of the kidney (glomeruli) resulting in glomerulonephritis (glomerulo=glomerulus, itis=inflammation); whereas in patients with Henoch-Schonlein purpura the injury is present in many vessels throughout the body resulting in widespread vasculitis (vasculo=vessel, itis=inflammation). The relatedness of IgA nephropathy and Henoch-Schonlein purpura was not recognized until the late 20th century when the vascular IgA deposits were first detected. Purpura (which means purple spots on the skin) is a particular type of rash that is caused by small spots of hemorrhage from small vessels in the skin. There are many causes of purpura, one category of which is inflammation of vessels (vasculitis). Henoch-Schonlein purpura is one of many types of vasculitis. Purpura that is caused by vasculitis usually occurs predominantly on the legs and buttocks; and the purple spots are slightly raised so that they can be felt (palpated) when you rub your finger over them (this is therefore called palpable purpura). In 1837, Johann Schonlein, a German physician, noticed the association of purpura with joint pain (arthralgias and arthritis) (Schonlein JL. Allegemeine und specielle Pathologie und Therapie, ed 3, vol 2, Herisau, Germany, Literatur-Comptoir, 1837;48). In 1868, Eduard Henoch, a German pediatrician … read more »

Response:

Question:

On Sat, 10 Apr 2004 20:28:34 GMT, "Walter Crosby" <wcrosby…@earthlink.net

wrote: Are you a nutcase or something?  IGAN.ORG has not had a single posting for years.

That’s because it’s now defunct. The facts therein are just as relevant today as they ever were, facts you try to suppress. Why?

 In fact, a few months ago, when I went there, it was nothing but an advertising site — obviously taken as a replacement for the URL’s original use.  If you want to work with a dead site that has no members, then go right ahead.  The rest of the world will work with an active site.

Delusions of grandeur? we’ll have to see about that.

Again — you’re the one with the problem here, not the moderators or members of the other site.

I just want people to know the truth, you try to hide it and then hurl abuse when confronted. Again I ask why do you try to suppress the truth? – Hide quoted text — Show quoted text -

"IgAN" <nomailfacil…@1230.net wrote in message news:mu4f70t4vgsr6c0u9v6mpfvhct72ts47rl@4ax.com… On Sat, 10 Apr 2004 03:49:42 GMT, "Walter Crosby" <wcrosby…@earthlink.net wrote: The posting below is an outrageous lie I think we can make our own mind up about that by simply comparing available information on the old IgAN.org site and yours! seems strange yours lacks quite a bit? by someone that is upset that postings regarding untested and unproven treatments would not be allowed by the Yahoo group moderators.  I know, because I was the moderator that would not allow the posting. One posting? there would appear to be ZERO! posting on your group showing alternative views to yours! considering all treatments in IgAN are unproven as it is a relatively new disease in medical terms, and that the majority of medicine available todays is from unproven sources and alternative therapies makes your one sided view a little obvious and clearly shows why we need to beware of censorship on the net. People like you are in grave danger of making a mockery of all the internet stands for. Freedom to access information from all sources. If you have a group with a claimed membership of thousands then it’s obvious we need to protect those people. If it’s so innocent, why not inform people before signing up the views are yours and yours alone? To hide behind this anonymous posting and make it sound like the Yahoo Group is doing something wrong is outrageous and a disservice to the thousands of people that get help everyday from igan.ca and the Yahoo Group. No it’s exposing you for what you are, why would the truth hurt you? If you want to believe the paranoid rantings of a person that doesn’t have the guts to put their name on their posting, then go right ahead. It’s easy to compare the information from your group, or rather lack of it, to whats available on the net and Igan.org, we can clearly see there are gaping holes in available current information missing on your site, why would you suppress current thinking? Myself, I prefer information that can be trusted — something I have been getting since December 2000 from the Yahoo group. Not quite what your posts on your own group would say! Bob Metcalfe, the creator of Ethernet said a few years ago "I would never participate in an online forum that I could not be the moderator of." His reasoning was that without proper moderation and guidance, groups have a tendency to descend into anarchy — something that the poster below is obviously trying to create. Really? I would say IgAN.Org was spot on with it’s views and information, not to mention it’s participants, except for sulkers like yourself who could not stand other peoples views. "Hergte" <sa…@home.nl wrote in message news:hcp570hr84r8cluluj5eucvga55dt21bac@4ax.com… On Tue,  6 Apr 2004 15:02:41 +0000 (UTC), Anonymous Sender <anonym…@remailer.metacolo.com wrote: It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here over the next few weeks you will NOT find at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk. Check it out yourselves and compare notes.            —————————————- The IgAN Foundation As you read these pages you may find a lot of unfamiliar technical and medical words. For the most part you shouldn’t worry about knowing the exact meaning of these specialist words right away. You will learn most of what there is to know about IgA Nephropathy with or without a full understanding of the technical words and you’ll learn their meaning as you read on. IgA Nephropathy or Berger’s ("burrjays") disease is the most common non-diabetic kidney disease. It results when IgA a normal component of the blood collects in the kidney as damaging deposits. These deposits are an immune system defect, hence IgAN is considered an autoimmune disease. Just why these deposits form is not known though a variety of factors such as family genetics and coincident infections seem to play important roles. Included in the diagnosis of IgAN is Henoch Schoenlein Purpura (HSP) where it involves the kidney and sometimes other forms of glomerulonephritis (kidney disease). Available evidence suggests that IgA nephropathy occurs from either increased production or reduced clearance of the immune protein IgA and associated antigen complexes that are ultimately deposited within the kidney. Many sources categorize IgAN as a rare disease with some sources claiming it afflicts 1:100,000. It seems that this estimated level of incidence for IgAN is not accurate as a large proportion of patients who present with IgAN symptoms have mild disease which is not diagnosed via the accepted biopsy diagnosis. One published study showed 94 out of 100,000 military inductees were diagnosed with IgAN. Other published research of random autopsy kidney biopsies suggests IgAN may be vastly more common and may affect up to 2-4% of the human population at large. Certainly there is a dramatic variance in the prevalence of diagnosed IgAN. In Japan and France where testing for the condition is part of regular preventative medical care the disease incidence is twice that found in the USA where testing for IgAN is rarely performed as preventative medicine. Most people probably never realize they have the disease or at least do not realize it until a late stage. Amongst those diagnosed as having IgAN as many as 20%- 30% will suffer eventual kidney failure within 10-20 years. They will require life saving dialysis and/or a kidney transplant. A Few Warning Signs of Kidney Disease Tea colored urine (hematuria – blood in the urine) Very foamy urine (proteinuria – protein in the urine) Puffiness around the eyes, hands, or feet (edema – fluid retention) High blood pressure Pain in the small of the back just below the ribs not aggravated by motion. Frequent urge to urinate especially at night and or reduced amount of urine produced. There are no "widely accepted" western medical treatments for IgAN save in the latest stages of the disease. There is however growing evidence that a number of therapies can be effective in delaying the deterioration of kidney function for many years. Most nephrologists with an active awareness of IgAN prescribe ACE inhibitors and fish oil at a minimum. In some cases powerful steroid treatment is utilized. For about half of those with IgAN tonsillectomy, which treats part of the underlying immune disorder, is effective. There are additional new treatments that show the promise of being a start on finding a cure for the disease. Research is one of the most important things this internet site is able to do by collecting data from individuals with IgAN. Since this condition is somewhat rare there are very few research projects focusing attention on the disease simply because recruiting patients to participate is difficult. Your help is desperately needed to find treatments and cures for IgAN. If you find the information on this site of use to you or your family please make a contribution of your own personal medical data so we can learn more about this condition. Just click on the menu item in the left hand margin. All submitted data is kept in the strictest confidence and in accordance to prevailing medical research rules. Your name will be kept secret and your data use only for medical research on IgAN and related conditions. Please help us by filling out the research questionnaire on this site and returning once or twice a year to update us on your condition. Foundation Mission Statement The IgAN Foundation’s mission is to provide vital and the latest information on the diagnosis and treatment of IgA Nephropathy to patients, their families, and their healthcare providers. We also serve as a voice for the

… read more »

Response:

On 27 Apr 2004 14:25:40 -0700, r-geo…@pacbell.net (Russ) wrote:

OK the original IgAN Foundation Web Site is back up.. A new address is www.iganfoundation.org … Thanks to all those who missed it. Russ

Thanks for coming back Russ. You state in the "what’s new" section

April 2004 After a long time with this web site being unavailable we have decided to post it again. There have been countless emails asking us to do this as the rest of the information on the Internet on this condition still seems to be lacking the point of view we support here. Hopefully we will find the renewed energy and enthusiasm to continue this effort. Anyone who wishes to help please think about what you can do to help and let us know.

The best thing you can do for starters is to keep the site up. The information is as valid today as it has ever been. If you never did anything to it again it will always remain informative, helpful and an impartial insight into this disease. Good luck Russ, hope you are doing well and we’ll see you on the other side. lol PS: Any chance getting the list up again so we can meet all our old chums? – Hide quoted text — Show quoted text -

The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.

""""""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.

Response:

On 27 Apr 2004 14:28:16 -0700, r-geo…@pacbell.net (Russ) wrote:

The orginal IgAN Foundation site is back.. with a new address www.iganfoundation.org Thanks to all who asked for it to return. Russ

Yahooooooooooooooooooooooooooo. Excellent, brilliant, wicked. Thanks Russ and don’t you ever leave us again you some….. LOL I’m sure we’ll spread the word. Nice to have you back. """"""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.

Response:

The orginal IgAN Foundation site is back.. with a new address www.iganfoundation.org Thanks to all who asked for it to return. Russ

Response:

On Sun, 11 Apr 2004 01:26:48 GMT, "Walter C" <wcrosby…@earthlink.net

wrote: Just because you are paranoid does not mean that people are suppressing the truth from you…

Instead of hurling abuse and lying, would it not just be simpler to answer the questions and then amend your policies if it’s so painful to you? Lets try again, if you have nothing to hide it should be easy. 1: It’s easy to compare the information from your group, or rather lack of it, to what’s available on the net and Igan.org, we can clearly see there are gaping holes in available current information missing on your site, why would you suppress current thinking? 2:  Why on your listserv is discussion on fish oil censored, therefore making it almost non existent despite it being a very serious debate in the field of IgAN among some of the worlds most eminent authorities? 3: Why on your listserv is discussion on tonsillectomy censored, therefore making it almost non existent despite it being a very serious debate in the field of IgAN among some of the worlds most eminent authorities? 4:Why have you chosen to abuse the spirit of moderation and use it to support your own mantra which stifles very serious debate on IgAN? Time for the owner to come clean it would seem.

Jeez — are you a conspiracy theorist or something?

No theory, just facts.  If there are any lies here than legal action is a recourse available to you. Go on see if you can suppress the truth that way, with the whole world watching. My main concern would be why would you try to manipulate peoples thoughts when supposedly running a support group? there’s a sick name for it I’m sure. – Hide quoted text — Show quoted text -

"IgAN" <nomailfacil…@1230.net wrote in message news:qsog701gjnu6f9bd99f09aiaeteqclo8i3@4ax.com… On Sat, 10 Apr 2004 20:28:34 GMT, "Walter Crosby" <wcrosby…@earthlink.net wrote: Are you a nutcase or something?  IGAN.ORG has not had a single posting for years. That’s because it’s now defunct. The facts therein are just as relevant today as they ever were, facts you try to suppress. Why?  In fact, a few months ago, when I went there, it was nothing but an advertising site — obviously taken as a replacement for the URL’s original use.  If you want to work with a dead site that has no members, then go right ahead.  The rest of the world will work with an active site. Delusions of grandeur? we’ll have to see about that. Again — you’re the one with the problem here, not the moderators or members of the other site. I just want people to know the truth, you try to hide it and then hurl abuse when confronted. Again I ask why do you try to suppress the truth? "IgAN" <nomailfacil…@1230.net wrote in message news:mu4f70t4vgsr6c0u9v6mpfvhct72ts47rl@4ax.com… On Sat, 10 Apr 2004 03:49:42 GMT, "Walter Crosby" <wcrosby…@earthlink.net wrote: The posting below is an outrageous lie I think we can make our own mind up about that by simply comparing available information on the old IgAN.org site and yours! seems strange yours lacks quite a bit? by someone that is upset that postings regarding untested and unproven treatments would not be allowed by the Yahoo group moderators.  I know, because I was the moderator that would not allow the posting. One posting? there would appear to be ZERO! posting on your group showing alternative views to yours! considering all treatments in IgAN are unproven as it is a relatively new disease in medical terms, and that the majority of medicine available todays is from unproven sources and alternative therapies makes your one sided view a little obvious and clearly shows why we need to beware of censorship on the net. People like you are in grave danger of making a mockery of all the internet stands for. Freedom to access information from all sources. If you have a group with a claimed membership of thousands then it’s obvious we need to protect those people. If it’s so innocent, why not inform people before signing up the views are yours and yours alone? To hide behind this anonymous posting and make it sound like the Yahoo Group is doing something wrong is outrageous and a disservice to the thousands of people that get help everyday from igan.ca and the Yahoo Group. No it’s exposing you for what you are, why would the truth hurt you? If you want to believe the paranoid rantings of a person that doesn’t have the guts to put their name on their posting, then go right ahead. It’s easy to compare the information from your group, or rather lack of it, to whats available on the net and Igan.org, we can clearly see there are gaping holes in available current information missing on your site, why would you suppress current thinking? Myself, I prefer information that can be trusted — something I have been getting since December 2000 from the Yahoo group. Not quite what your posts on your own group would say! Bob Metcalfe, the creator of Ethernet said a few years ago "I would never participate in an online forum that I could not be the moderator of." His reasoning was that without proper moderation and guidance, groups have a tendency to descend into anarchy — something that the poster below is obviously trying to create. Really? I would say IgAN.Org was spot on with it’s views and information, not to mention it’s participants, except for sulkers like yourself who could not stand other peoples views. "Hergte" <sa…@home.nl wrote in message news:hcp570hr84r8cluluj5eucvga55dt21bac@4ax.com… On Tue,  6 Apr 2004 15:02:41 +0000 (UTC), Anonymous Sender <anonym…@remailer.metacolo.com wrote: It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here over the next few weeks you will NOT find at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk. Check it out yourselves and compare notes.            —————————————- The IgAN Foundation As you read these pages you may find a lot of unfamiliar technical and medical words. For the most part you shouldn’t worry about knowing the exact meaning of these specialist words right away. You will learn most of what there is to know about IgA Nephropathy with or without a full understanding of the technical words and you’ll learn their meaning as you read on. IgA Nephropathy or Berger’s ("burrjays") disease is the most common non-diabetic kidney disease. It results when IgA a normal component of the blood collects in the kidney as damaging deposits. These deposits are an immune system defect, hence IgAN is considered an autoimmune disease. Just why these deposits form is not known though a variety of factors such as family genetics and coincident infections seem to play important roles. Included in the diagnosis of IgAN is Henoch Schoenlein Purpura (HSP) where it involves the kidney and sometimes other forms of glomerulonephritis (kidney disease). Available evidence suggests that IgA nephropathy occurs from either increased production or reduced clearance of the immune protein IgA and associated antigen complexes that are ultimately deposited within the kidney. Many sources categorize IgAN as a rare disease with some sources claiming it afflicts 1:100,000. It seems that this estimated level of incidence for IgAN is not accurate as a large proportion of patients who present with IgAN symptoms have mild disease which is not diagnosed via the accepted biopsy diagnosis. One published study showed 94 out of 100,000 military inductees were diagnosed with IgAN. Other published research of random autopsy kidney biopsies suggests IgAN may be vastly more common and may affect up to 2-4% of the human population at large. Certainly there is a dramatic variance in the prevalence of diagnosed IgAN. In Japan and France where testing for the condition is part of regular preventative medical care the disease incidence is twice that found in the USA where testing for IgAN is rarely performed as preventative medicine. Most people probably never realize they have the disease or at least do not realize it until a late stage. Amongst those diagnosed as having IgAN as many as 20%- 30% will suffer eventual kidney failure within 10-20 years. They will require life saving dialysis and/or a kidney transplant. A Few Warning Signs of Kidney Disease Tea colored urine (hematuria – blood in the urine) Very foamy urine (proteinuria – protein in the urine) Puffiness around the eyes, hands, or feet

… read more »

Response:

OK the original IgAN Foundation Web Site is back up.. A new address is www.iganfoundation.org … Thanks to all those who missed it. Russ – Hide quoted text — Show quoted text -

The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.

Response:

Just because you are paranoid does not mean that people are suppressing the truth from you… Jeez — are you a conspiracy theorist or something? "IgAN" <nomailfacil…@1230.net

wrote in message

news:qsog701gjnu6f9bd99f09aiaeteqclo8i3@4ax.com… – Hide quoted text — Show quoted text -

On Sat, 10 Apr 2004 20:28:34 GMT, "Walter Crosby" <wcrosby…@earthlink.net wrote: Are you a nutcase or something?  IGAN.ORG has not had a single posting

for

years. That’s because it’s now defunct. The facts therein are just as relevant today as they ever were, facts you try to suppress. Why?  In fact, a few months ago, when I went there, it was nothing but an advertising site — obviously taken as a replacement for the URL’s

original

use.  If you want to work with a dead site that has no members, then go right ahead.  The rest of the world will work with an active site. Delusions of grandeur? we’ll have to see about that. Again — you’re the one with the problem here, not the moderators or

members > >of the other site. > I just want people to know the truth, you try to hide it and then hurl > abuse when confronted. > Again I ask why do you try to suppress the truth? > >"IgAN" <nomailfacil…@1230.net

wrote in message

> >news:mu4f70t4vgsr6c0u9v6mpfvhct72ts47rl@4ax.com… > >> On Sat, 10 Apr 2004 03:49:42 GMT, "Walter Crosby" > >> <wcrosby…@earthlink.net> wrote: > >> >The posting below is an outrageous lie > >> I think we can make our own mind up about that by simply comparing > >> available information on the old IgAN.org site and yours! seems > >> strange yours lacks quite a bit? > >> > by someone that is upset that > >> >postings regarding untested and unproven treatments would not be allowed

by the Yahoo group moderators.  I know, because I was the moderator that would not allow the posting. One posting? there would appear to be ZERO! posting on your group showing alternative views to yours! considering all treatments in IgAN are unproven as it is a relatively new disease in medical terms, and that the majority of medicine available todays is from unproven sources and alternative therapies makes your one sided view a little obvious and clearly shows why we need to beware of censorship on the net. People like you are in grave danger of making a mockery of all the internet stands for. Freedom to access information from all sources. If you have a group with a claimed membership of thousands then it’s obvious we need to protect those people. If it’s so innocent, why not inform people before signing up the views are yours and yours alone? To hide behind this anonymous posting and make it sound like the Yahoo Group is doing something wrong is outrageous and a disservice to the

thousands

of people that get help everyday from igan.ca and the Yahoo Group. No it’s exposing you for what you are, why would the truth hurt you? If you want to believe the paranoid rantings of a person that doesn’t have the guts to put their name on their posting, then go right ahead. It’s easy to compare the information from your group, or rather lack of it, to whats available on the net and Igan.org, we can clearly see there are gaping holes in available current information missing on your site, why would you suppress current thinking? Myself, I prefer information that can be trusted — something I have been

getting

since December 2000 from the Yahoo group. Not quite what your posts on your own group would say! Bob Metcalfe, the creator of Ethernet said a few years ago "I would

never

participate in an online forum that I could not be the moderator of." His reasoning was that without proper moderation and guidance, groups have

a > >> >tendency to descend into anarchy — something that the poster below is > >> >obviously trying to create. > >> Really? I would say IgAN.Org was spot on with it’s views and > >> information, not to mention it’s participants, except for sulkers like > >> yourself who could not stand other peoples views. > >> >"Hergte" <sa…@home.nl

wrote in message

> >> >news:hcp570hr84r8cluluj5eucvga55dt21bac@4ax.com… > >> >On Tue,  6 Apr 2004 15:02:41 +0000 (UTC), Anonymous Sender > >> ><anonym…@remailer.metacolo.com> wrote: > >> >>It would seem we need to BEWARE who we seek advice from. > >> >>WWW.IGAN.CA is an heavily censored site, this includes the listserv > >> >>iga-nephropathy @yahoogroups.com. It is also run for financial reward.

The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here over the next few weeks you will NOT find at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk. Check it out yourselves and compare notes.            —————————————- The IgAN Foundation As you read these pages you may find a lot of unfamiliar technical

and

medical words. For the most part you shouldn’t worry about knowing

the

exact meaning of these specialist words right away. You will learn most of what there is to know about IgA Nephropathy with or without a full understanding of the technical words and you’ll learn their meaning as you read on. IgA Nephropathy or Berger’s ("burrjays") disease is the most common non-diabetic kidney disease. It results when IgA a normal component

of

the blood collects in the kidney as damaging deposits. These deposits are an immune system defect, hence IgAN is considered an autoimmune disease. Just why these deposits form is not known though a variety

of

factors such as family genetics and coincident infections seem to

play

important roles. Included in the diagnosis of IgAN is Henoch Schoenlein Purpura (HSP) where it involves the kidney and sometimes other forms of glomerulonephritis (kidney disease). Available evidence suggests that IgA nephropathy occurs from either increased production or reduced clearance of the immune protein IgA and associated antigen complexes that are ultimately deposited within the kidney. Many sources categorize IgAN as a rare disease with some sources claiming it afflicts 1:100,000. It seems that this estimated level of incidence for IgAN is not accurate as a large proportion of patients who present with IgAN symptoms have mild disease which is not diagnosed via the accepted biopsy diagnosis. One published study showed 94 out of 100,000 military inductees were diagnosed with IgAN. Other published research of random autopsy kidney biopsies suggests IgAN may be vastly more common and may affect up to 2-4% of the human population at large. Certainly there is a dramatic variance in the prevalence of diagnosed IgAN. In Japan and France where testing for the condition is part of regular preventative medical care the

disease

incidence is twice that found in the USA where testing for IgAN is rarely performed as preventative medicine. Most people probably never realize they have the disease or at least do not realize it until a late stage. Amongst those diagnosed as having IgAN as many as 20%-

30%

will suffer eventual kidney failure within 10-20 years. They will require life saving dialysis and/or a kidney transplant. A Few Warning Signs of Kidney Disease Tea colored urine (hematuria – blood in the urine) Very foamy urine (proteinuria – protein in the urine) Puffiness around the eyes, hands, or feet (edema – fluid retention) High blood pressure Pain in the small of the back just below the ribs not aggravated by motion. Frequent urge to urinate especially at night and or reduced amount of urine produced. There are no "widely accepted" western medical treatments for IgAN save in the latest stages of the disease. There is however growing evidence that a number of therapies can be effective in delaying the deterioration of kidney function for many years. Most nephrologists with an active awareness of IgAN prescribe ACE inhibitors and fish

oil

at a minimum. In some cases powerful steroid treatment is utilized. For about half of those with IgAN tonsillectomy, which treats part of the underlying immune disorder, is effective. There are additional

new

treatments that show the promise of being a start on finding a cure for the disease. Research is one of the most important things this internet site is able to do by collecting data from individuals with IgAN. Since this condition is somewhat rare there are very few research projects focusing attention on the disease simply because recruiting patients to participate is difficult. Your help is desperately needed to find treatments and cures for IgAN. If you find the information on this site of use to you or your family please make a contribution of your own personal medical data so we can learn more about this condition. Just click on the menu item in the left hand margin. All submitted data is kept

… read more »

Response:

Personal Stories My Own Story Russ George founder IgAN Home Page and IgANF, started 1995 this is an on going story last update Dec.98 I’m a 49 year old white male living in the Silicon Valley of California. I discovered I had abnormal protein and red blood cells in my urine during a physical which my life insurance company was conducting about 9 months ago. They didn’t say anything was amiss by the way they just stopped processing the insurance policy. When I inquired about why they said to ask them in writing for the results of my medical. When I did this I received, some months later without any explanation, copies of the urine and blood tests which showed tick marks next to some of the numbers. I sent the test results to my family practitioner and asked him to tell me what the reports said. My doctor called back immediately and said I should come in right away for additional tests. I had high protein in my urine and an elevated red blood cell count. Further tests confirmed this and I began a series of tests. The first were simple blood and urine analysis which confirmed the abnormal readings. The next tests were IVP kidney urinary tract x-rays which showed no abnormalities. The next was a cytoscopic exam which also showed no bladder or urethra abnormalities. This was followed by a 24 hour urine test which confirmed again urine with high protein. A kidney sonogram study was conducted which did not reveal any abnormalities and I was then referred to a nephrologist. The nephrologist made an initial diagnostic guess of IgA Nephropathy and ordered a renal biopsy. The biopsy confirmed the diagnosis and he recommended that I begin taking 12gms of fish oil in capsules every day. I feel pretty good and have not noticed a lot of effects of this disease. I have noticed that my urine is sometimes bright yellow and or foamy (both signs of heavy proteinuria). It is often rather concentrated but there is still good daily volume. If I take certain medications like acetaminophen or ibuprofen my urine can turn tea colored. I have begun to take and record my blood pressure regularly and it was un-medicated generally 125-150 over 80-105, a range that is a little more towards the high side than I am happy with. Recently I began taking Enalapril, an ACE inhibitor, to help control the high blood pressure. It seems to work pretty well but I still see some swings up into high BP ranges from time to time. I haven’t noticed edema, swelling of my feet or puffy eyes. I don’t have headaches any more than usual. I weigh about 30 pounds more than I should for my age and height and I have begun to make a serious effort to get my weight down. I am watching my salt and fluid intake. Recently (fall 95) my serum cholesterol has shown a dramatic increase. Where a year ago my total cholesterol was about 210-215 it is now regularly above 260 and at times as high a 295. Others with IgAN have told me that they suffered elevated cholesterol, as high as 500 and are receiving medication to control this condition. I will be discussing the addition of cholesterol medication to my own therapeutic regime with my doctor soon. Being a scientist by both training and profession I began immediately researching this condition and found to my dismay that in spite of 25 years of research not a lot is known in the way of cause or treatment for this disease. I decided to do something about it myself as I have some experience in scientific research and some now very strong motivation. I am banking on the fact that highly motivated science brings better results. In August of 1995 I created the IgA Nephropathy Homepage to share my research findings on this topic on the Internet and to promote further research in the field. ** I’ve recently been asked to join a research project being conducted by medical school that will track the progression of IgA in patients receiving various treatments. I welcome the opportunity to participate and learn more on how this disease effects not only myself but others. I’ll post occasional updates on the research here.** In January 1996 I underwent tonsillectomy as a therapy for IgAN. The tonsillectomy was performed my doctor as an outpatient/overnight procedure. I entered a local surgical clinic early one morning. The operation was performed under a general anesthetic and lasted about one hour. I awoke while still under the influence of the pain medication and felt quite well. Over the course of the day I had began to feel the pain of the operation which was well controlled with medication but unpleasant never-the-less. I decided to stay overnight at the facility to relieve my family of the burden of my first restless night. The next day I went home early in the morning (a Friday). Over the course of the next week I was unable to work and remained at home. The pain was considerable but controlled to a tolerable point by the medications. I was a little surprised at the amount of recovery time I required. By Monday 11 days after the procedure I was able to return to work however my energy level was still a little low. Now it is about one month since the procedure and I am just about back to 100%. My throat is well healed though occasionally a little sore and I am looking forward to seeing if my test results show an improvement in a diminished protein loss and other factors. My personal tonsillectomy results. When I was first diagnosed with IgAN I had a 24hr urine protein of about 2800mg/24hr. About three months after diagnosis, via biopsy, I was on both ACE inhibitors and 12gm fish oil per day. Within 6 months my 24hr urine protein had dropped to about 1600mg/day and there it stayed for more than 6 months. I then went in for tonsillectomy and following my urine protein levels began to drop significantly. Within 60 days my 24hr urine protein was down to about 800mg/24hr and by 4 months it was down to about 400-500mg/24hr where it has remained for many months. I was enrolled in a kidney research project at a major university medical school since my diagnosis and as a result of the dramatic improvement I showed following tonsillectomy that research project has been expanded to include tonsillectomy as a therapy being investigated. Early reports look very promising especially for those who have IgAN and suffer frequent sore throats. I’m told I am the only person in the world with their personal urine chemistry data posted on the Internet. It’s nice to be special. The chart shows my clinical chemistry results tracking 24 hour urine protein losses. It’s apparent that both the ACE inhibitor/fish oil and the tonsillectomy had large effects. It seems apparent to me that my condition has improved considerably. One has to be very careful with this disease which is usually very slow moving. However any improvement or slowing of the decline in kidney function is life far preferable to the alternative of dialysis or transplant. A cure would be great but in the meantime I am satisfied buying myself functioning kidneys. Back to Top of Page IgAN Home   IgA Nephropathy Foundation 3309 Alma St. Palo Alto, CA 94306 – i…@igan.org """"""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.

Response:

Are you a nutcase or something?  IGAN.ORG has not had a single posting for years.  In fact, a few months ago, when I went there, it was nothing but an advertising site — obviously taken as a replacement for the URL’s original use.  If you want to work with a dead site that has no members, then go right ahead.  The rest of the world will work with an active site. Again — you’re the one with the problem here, not the moderators or members of the other site. "IgAN" <nomailfacil…@1230.net

wrote in message

news:mu4f70t4vgsr6c0u9v6mpfvhct72ts47rl@4ax.com… – Hide quoted text — Show quoted text -

On Sat, 10 Apr 2004 03:49:42 GMT, "Walter Crosby" <wcrosby…@earthlink.net wrote: The posting below is an outrageous lie I think we can make our own mind up about that by simply comparing available information on the old IgAN.org site and yours! seems strange yours lacks quite a bit? by someone that is upset that postings regarding untested and unproven treatments would not be allowed

by

the Yahoo group moderators.  I know, because I was the moderator that

would

not allow the posting. One posting? there would appear to be ZERO! posting on your group showing alternative views to yours! considering all treatments in IgAN are unproven as it is a relatively new disease in medical terms, and that the majority of medicine available todays is from unproven sources and alternative therapies makes your one sided view a little obvious and clearly shows why we need to beware of censorship on the net. People like you are in grave danger of making a mockery of all the internet stands for. Freedom to access information from all sources. If you have a group with a claimed membership of thousands then it’s obvious we need to protect those people. If it’s so innocent, why not inform people before signing up the views are yours and yours alone? To hide behind this anonymous posting and make it sound like the Yahoo

Group

is doing something wrong is outrageous and a disservice to the thousands

of

people that get help everyday from igan.ca and the Yahoo Group. No it’s exposing you for what you are, why would the truth hurt you? If you want to believe the paranoid rantings of a person that doesn’t

have

the guts to put their name on their posting, then go right ahead. It’s easy to compare the information from your group, or rather lack of it, to whats available on the net and Igan.org, we can clearly see there are gaping holes in available current information missing on your site, why would you suppress current thinking? Myself, I prefer information that can be trusted — something I have been getting since December 2000 from the Yahoo group. Not quite what your posts on your own group would say! Bob Metcalfe, the creator of Ethernet said a few years ago "I would never participate in an online forum that I could not be the moderator of."

His > >reasoning was that without proper moderation and guidance, groups have a > >tendency to descend into anarchy — something that the poster below is > >obviously trying to create. > Really? I would say IgAN.Org was spot on with it’s views and > information, not to mention it’s participants, except for sulkers like > yourself who could not stand other peoples views. > >"Hergte" <sa…@home.nl

wrote in message

> >news:hcp570hr84r8cluluj5eucvga55dt21bac@4ax.com… > >On Tue,  6 Apr 2004 15:02:41 +0000 (UTC), Anonymous Sender > ><anonym…@remailer.metacolo.com> wrote: > >>It would seem we need to BEWARE who we seek advice from. > >>WWW.IGAN.CA is an heavily censored site, this includes the listserv > >>iga-nephropathy @yahoogroups.com. It is also run for financial reward. > >>The original IgAN help group was www.igan.org hosted by Russ George. > >>It is now proposed that the very valuable information on that website > >>is published once again, so that IgAN sufferers have a resource they > >>can trust once again. > >>please note we have no connection with igan.org this is a public > >>information service. Much of the information here over the next few > >>weeks you will NOT find at igan.ca, because it has been censored by a > >>misfit who left the real IgAN support group in a sulk. > >>Check it out yourselves and compare notes. > >>            —————————————- > >>The IgAN Foundation > >>As you read these pages you may find a lot of unfamiliar technical and > >>medical words. For the most part you shouldn’t worry about knowing the > >>exact meaning of these specialist words right away. You will learn > >>most of what there is to know about IgA Nephropathy with or without a > >>full understanding of the technical words and you’ll learn their > >>meaning as you read on. > >>IgA Nephropathy or Berger’s ("burrjays") disease is the most common > >>non-diabetic kidney disease. It results when IgA a normal component of > >>the blood collects in the kidney as damaging deposits. These deposits > >>are an immune system defect, hence IgAN is considered an autoimmune > >>disease. Just why these deposits form is not known though a variety of > >>factors such as family genetics and coincident infections seem to play > >>important roles. > >>Included in the diagnosis of IgAN is Henoch Schoenlein Purpura (HSP) > >>where it involves the kidney and sometimes other forms of > >>glomerulonephritis (kidney disease). Available evidence suggests that > >>IgA nephropathy occurs from either increased production or reduced > >>clearance of the immune protein IgA and associated antigen complexes > >>that are ultimately deposited within the kidney. > >>Many sources categorize IgAN as a rare disease with some sources > >>claiming it afflicts 1:100,000. It seems that this estimated level of > >>incidence for IgAN is not accurate as a large proportion of patients > >>who present with IgAN symptoms have mild disease which is not > >>diagnosed via the accepted biopsy diagnosis. One published study > >>showed 94 out of 100,000 military inductees were diagnosed with IgAN. > >>Other published research of random autopsy kidney biopsies suggests > >>IgAN may be vastly more common and may affect up to 2-4% of the human > >>population at large. Certainly there is a dramatic variance in the > >>prevalence of diagnosed IgAN. In Japan and France where testing for > >>the condition is part of regular preventative medical care the disease > >>incidence is twice that found in the USA where testing for IgAN is > >>rarely performed as preventative medicine. Most people probably never > >>realize they have the disease or at least do not realize it until a > >>late stage. Amongst those diagnosed as having IgAN as many as 20%- 30% > >>will suffer eventual kidney failure within 10-20 years. They will > >>require life saving dialysis and/or a kidney transplant. > >>A Few Warning Signs of Kidney Disease > >>Tea colored urine > >>(hematuria – blood in the urine) > >>Very foamy urine > >>(proteinuria – protein in the urine) > >>Puffiness around the eyes, hands, or feet > >>(edema – fluid retention) > >>High blood pressure > >>Pain in the small of the back just below the ribs not aggravated by > >>motion. > >>Frequent urge to urinate especially at night and or reduced amount of > >>urine produced. > >>There are no "widely accepted" western medical treatments for IgAN > >>save in the latest stages of the disease. There is however growing > >>evidence that a number of therapies can be effective in delaying the > >>deterioration of kidney function for many years. Most nephrologists > >>with an active awareness of IgAN prescribe ACE inhibitors and fish oil > >>at a minimum. In some cases powerful steroid treatment is utilized. > >>For about half of those with IgAN tonsillectomy, which treats part of > >>the underlying immune disorder, is effective. There are additional new > >>treatments that show the promise of being a start on finding a cure > >>for the disease. > >>Research is one of the most important things this internet site is > >>able to do by collecting data from individuals with IgAN. Since this > >>condition is somewhat rare there are very few research projects > >>focusing attention on the disease simply because recruiting patients > >>to participate is difficult. Your help is desperately needed to find > >>treatments and cures for IgAN. If you find the information on this > >>site of use to you or your family please make a contribution of your > >>own personal medical data so we can learn more about this condition. > >>Just click on the menu item in the left hand margin. All submitted > >>data is kept in the strictest confidence and in accordance to > >>prevailing medical research rules. Your name will be kept secret and > >>your data use only for medical research on IgAN and related > >>conditions. Please help us by filling out the research questionnaire > >>on this site and returning once or twice a year to update us on your > >>condition. > >>Foundation Mission Statement > >>The IgAN Foundation’s mission is to provide vital and the latest > >>information on the diagnosis and treatment of IgA Nephropathy to > >>patients, their families, and their healthcare providers. We also > >>serve as a voice for the multitudes of IgAN patients as advocates for > >>enlightened regulatory, research, and appropriate funding policies > >>affecting treatment and research. Most of all we hope to inspire > >>people to make informed choices amid uncertainty and to choose hope > >>over despair. > >>This page is here to enable and encourage world wide communication and > >>collaborative research on this common kidney disease. We are confident > >>that the IgAN Home Page will help us all to find effective treatments > >>and a cure for this disease. > >>——— > >>If you are interested in adding more information on your

… read more »

Response:

J Am Soc Nephrol 13:142-148, 2002

Question:

<< Tom, I guarantee you that you will find so many things to interest you that you won’t miss the internet at all. I expect to not get bored.  I like to drive, bike ride, and walk in new places. Tom M

Response:

I expect to not get bored.  I like to drive, bike ride, and walk in new places. Tom M

Tom, will you be traveling solo?   Hunter http://members.aol.com/airstm2268/roadtrip2003.htm My rig: http://members.aol.com/airstm2268/excella.htm "You only get to choose what you read, not what I write."

Response:

Tom, I guarantee you that you will find so many things to interest you that you won’t miss the internet at all. J The Road Princess

We couldn’t function without the Internet. We are set up to do all of our banking, investments, bill paying, etc., online. We get 3 pictures of the grandbabies each and every week, along with e-mail almost daily from their mom. We get statements from our retirement programs electronically, transfer funds from one retirement fund to another, and communicate with Alternative Resources via e-mail. That way there is a trail of evidence so we, and they, know exactly what is _supposed_ to happen. I pesonalized AOL (now that I have 9.0, and can) so that with one click of the button it brings up the latest sports scores on _only_ my favorite teams, on the same screen shows me the latest news in Michigan, _and_ the latest prices on every stock I own (and only those stocks). It even shows me, on the same screen, what sports programs are on TV today, along with the time and channel. We even file and pay our taxes online. Not miss the Internet????? It would be a cold day in hell! How did we survive before the Internet? Lon

Response:

<< Tom, will you be traveling solo?   I expect to be solo most of the time.  I’ve set up for comfortable living room sleeping so I can give the bed room to guests.  If I could split my time between entertaining guests, visiting others, and traveling solo, I would consider that ideal. In the second or third winter, I’ll be looking for a square dance teacher — full or part time. Tom M

Response:

I’m sure you were trying to be helpful, but you used abreviations which mean nothing to me. Carolyn and I put our heads together and figured out that BB might mean Blue Bird. BBK and MWR left us shaking our heads. I think you’ve

BPK=Big Pines Key MWR=Morale, Welfare and Recreation — Don Bradner donb at arcatapet dot com www.arcatapet.net

Response:

Tom M, hearing that it will be even slower on a cell phone

Three or four minutes per picture, usually. Lon

Response:

VanOstran) writes: Tom M, hearing that it will be even slower on a cell phone Three or four minutes per picture, usually. Lon

If you can convince the sender to save the picture at a fairly low resolution (70 megapixels) *and* to shrink the size of the picture to no larger than 5×7, hope that they have AOL which automatically zips the pictures,they come down rather quickly, even on the cell phone.  The Express Net on Verizon worked great for the murals my daughter and her step mother sent me.  It took about 7 minutes to dowload 5 zipped murals at low resolution.  By murals I mean that the default on their digital cameras is 30×17.  Neither has the capability of saving the photos in a smaller size. J The Road Princess Residentially Challenged Spelling and punctuation is up to my editors. I take no responsibility

Response:

One thing that I’ll miss is the 190 k bytes per second downloads.  Make surfing with ten browser windows fun.  Still, I think I’ll put up with 2 k bytes per second and be where I want to be.

Tom, I guarantee you that you will find so many things to interest you that you won’t miss the internet at all. J The Road Princess Residentially Challenged Spelling and punctuation is up to my editors. I take no responsibility

Response:

<< Tom M, hearing that it will be even slower on a cell phone Three or four minutes per picture, usually. Lon One thing that I’ll miss is the 190 k bytes per second downloads.  Make surfing with ten browser windows fun.  Still, I think I’ll put up with 2 k bytes per second and be where I want to be. Tom M

Response:

writes: Tight Lines,, Jimmy

Jimmy, I’m sure you were trying to be helpful, but you used abreviations which mean nothing to me. Carolyn and I put our heads together and figured out that BB might mean Blue Bird. BBK and MWR left us shaking our heads. I think you’ve Lon

Response:

writes: Jim An Old Parrot Head, In the Conch Republic, Just South of Reality

Was that your red Hummer with the "Parrot Head" license plate? <g Lon

Response:

Tom M, wintered in Fort Myers Beach in ‘68 and ‘69 — It may have changed some.

I can send you some pictures later this week if you wish. We just pulled into the Encore Sunburst park in North Fort Meyers. Lon

Response:

I. The Keys are a string of islands that were Coral Reefs at one time,,

they are not barrier islands like NC’s Outer Banks. The Keys current barrier is a 150 mile string of

North Americas only live coral reefs, that in most areas are 5 miles off shore. … Can you tell I love it here???

You forgot to mention taking the seaplane over to Fort Jefferson/Dry Tortugas- well worth the money.

Response:

<< I can send you some pictures later this week if you wish. We just pulled into the Encore Sunburst park in North Fort Meyers. Lon Please do.  If you would copy He has a blazing connection. Tom M, hearing that it will be even slower on a cell phone

Response:

Paul I didn’t mention my seaplane to Ft Jefferson,,, Because it smaller than a C5A,, Little enough room for 6 passengers,, NO MH’s ALLOWED,, Figured it would be OT??? Jimmy

Response:

Lon Tell you how well the Key’s Real-estate Market is growing,,, Several of our Local agents now ride in H1’s & H2’s,, Prices for 1K sq ft homes on good canals have tripled in the last 5 years,, Average on BPK is 400K to 600K,, water front 800K to 1.2M,, Realtors expect it to happen again… It’s is semi-obscene,, if it keeps up,, I’ll buy my BB cash… Tight Lines,, Jimmy The Old Parrot Head, In the Conch Republic, Just South of Reality PS: For my active duty and retired friends…. Here are the Key West MWR phone #’s,, share it with your friends… MWR Facilities 1-888-539-7697 Beach Patio Recreation Center 293-5282 Sunset Lounge 293-4435/4496 Flying Conch Lounge 293-4208 Trumbo Point Campground & Sigsbee RV Park 293-4494 Trumbo Point Vacation Rentals 293-5000 Sigsbee Marina 293-4434 Boca Chica Marina 293-2402/2468 Trumbo Palms Restaurant 293-4306/4324 This link also mention of the USCG Marathon MWR lodging?? http://www.uscg.mil/d7/units/grukeywest/MWR.htm If it helps???

Response:

Lon I have to take a couple of small exceptions to your otherwise very accurate note: I. The Keys are a string of islands that were Coral Reefs at one time,, they are not barrier islands like NC’s Outer Banks. The Keys current barrier is a 150 mile string of North Americas only live coral reefs, that in most areas are 5 miles off shore. This leads to some distinctions. We don’t have a lot of wave action on our islands,, wave action causes debris and coral stones to brake down into sand,, hence we don’t have a lot of beaches. None the less, there are some. Key West, the island, has maybe 3+ miles of beach on the south side of the island,, there is: Smathers, Rest, Dog, Higgs, Broken, South, & the O-club at Truman Annex. There are also other natural beaches up the string. The bigger ones: Sombrero, Holiday Isle, Indian Key Fill, Little Duck Key, Pennekamp State Park, Bahia Honda, Long Key, & Anne’s. There are others, but again we are not a barrier island string so what we have is limited. Someone have thought enough of our Bahia Honda State Park to vote it best beach in the USA in 1992. If you have a boat, there are sand bars on the North side, in the back country, that are about 15" out of the water at low tide and only 10" under water at high tide. They are 1000 miles from no-body, rarely visited. They are made of very fine sugar sand, as white as snow,, some are several acres in area,, Ya sneak out there, toss the anchor, set your beach chair at the edge so about 4" is under water,, prop the ice-chest nest to the chair,, pop open a Bud,,, get the rod set up with a bit of shrimp,, give the rod to the significant other,,,, relax, snooze, Beautiful…. 2.The drive?? The drive down this string of little islands is spectacular, the colors of the shallow water(s) run all the blues/greens/whites/tans your could ever see. I love leaving the ROCK,,, because I know the view I get on my way home… I would suggest that anyone making the run to KW,, switch drivers on the way back, so you can both enjoy the view… Conversely,, PLEASE DON’T TRY TO ENJOY THE VIEW WHILE YOU ARE DRIVING,,, we only have one road, US 1,, and the local LEO’s will close it down solid for 4 to 6 hours when there is a fatality… Your suggestion to leave the MH in Florida City or Homestead and use the turtle is a very good idea.. 3,4,5  Your right,, I think your may be referring to the Conch Train?? I send all our in-laws/out-laws to the train,, it’s two hours well spent..  Don’t forget to get your Tattoo’s as soon as you get here,, that way they will be healed before you go home to Mom & Pop…. I would add that the view from the front seat of a MH or any view from the street/road is only 0.01% of the view,,,, The Keys are some 150 miles long, stretch 5 miles to the East/South, and run up to the Everglades on the North side of US 1,,,,, this is an area of some 3K to 5K square miles. My point you need to get out in the water… 6.Avoid?? Key West is one of several areas in this great country that is very tolerant of alternate life styles,, if you don’t think you can be tolerant,, learn to deal with it.. As a major Tourista destination KW and the Key’s do have their problems with unscrupulous persons that may try to separate you from your money,, happens all over.. Not everyone coming to the Keys is rich,, we have a large winter population of people that HAVE TO get out of the cold,, nuff said… Other Avoid(s)?? a. the high season, Thanksgiving thru Easter,,, for some reason we get a lot of people that are not fond of snow b. the little high season, Memorial Day thru Labor Day,, for some reason we get a lot of people who wait until their kids are out of school to visit the Keys c.other season(s),,  we have one of the most active CoC organizations in the world,, we even have a special visitors tax to pay for advertising events that try to fill our beds when there isn’t any "season",,, events like(but not limited to) Fantasy Fest(100K to 200K+, lots of nikid bodies,, lots of beer,, no kids,, nuff said??), Bike Week(s) (100K+,, nice people,, expensive scoots), and to fill in the gaps: Fishing Tournaments(s) (all the time,, lots of fun). Oh,,There is Mini-season and the 1st two weeks of Lobster Season, July-August,, not fun,, a real nut house,, be advise,,, they eat reel good….. One needs to plan their visit to correspond with the events that are fitting to their lifestyle. 7&8, Here is the FAQ maintained by a bunch of fisher-persons: http://outdoorsbest.zeroforum.com/zerothread?id=100907 If you don’t find an answer to your questions,, please post to the forum: http://outdoorsbest.zeroforum.com/zeroforum?id=9 Oh,, Fat Albert,, both FA1 and FA2,, our Alberts are currently maintain on government property and are used for TV and Radio Marti,,, the Cuban version of Radio Free Europe. They have, in the past, been used for both DEA drug intervention(watching drug ships & planes) and NORAD ICBM(watching Cuba), but I am pretty sure that effort has just about dried up. Each is about 150 ft long, is ‘tied’ to a rope on the back of a pick-up, pop up/down several times a day(depending on required maintenance and weather), are run by LP gas generators in the pod (no control or data wires to the ground), data is beamed up via micro-wave. You can get fairly close to the fence on Cudjoe Key to take a pic. There are several "Fat Albert" sites strung across the border of the US, from Florida to Baja in California. I like them because they give me a quick est on wind directions. AND yes, every couple years one gets loose and the KW-NAS jet jockeys get a change to shoot one down… Now the part missed or maybe less covered: WE FISH.. The Keys are one of THE most accessible & successful fishing areas in the world. I am sure if you looked at the IGFA records for salt-water species will find the Florida Keys account for a vast majority of the North American records.. If you don’t fish,, WE DIVE,, the Keys contained North American’s most accessible & beautiful reef system you can drive to… WE BIRD,,, the Keys are on fly ways that seem to be always in use, there are several bird watches and counts done regularly.. While planning your next trip to the Keys,,get to your local library, try to find these books: Salt Water Fly Fishing Magic, Neal & Linda Rogers, isbn – 1-55821-253-1 Marquesa, A Time & Place with Fish, Jeffrey Cardenas, isbn 0-9620609-2, a novelette or semi-autobiographical story of Jeff and a 30 day camping trip to Mooney Harbor, 25 miles off Key West. The Florida Keys, John Viele, vol 1-isbn 1-56164-101-4, vol 2-isbn 1-56164-179-0, vol 3-isbn 1-56164-219-3, A history of the Keys The 1st is a fantastic photo album of saltwater fly fishing and should get any outdoor photog’s juices running. Makes a great coffee table book.  The 2nd will get your head in the right latitude, it’s written by a local fellow that has a fly fishing shop in KW. The 3rd is a trilogy John(another local retiree) wrote about the history of the Keys. It gives some antidotal & personnel history notes about what it was like living here 200 years ago. I will stop here,, I don’t want to come across as a used card salesman,, at the same time I am a local,,and I do mumble & complain about Tourista(s), with the associated traffic hassle, long lines at the bar and restaurants,, and the nikid bodies that should be covered in large hemp bags (speedo’s should be out-lawed for anyone over 16)… BUT then,, before I retired,, for 30 years,,, I was a Tourista,, too….. Key words to use in your search engine(aka: Google.com) : Monroe Country Florida, "the Keys", "Fantasy Fest", IGFA World Records, Key West, Conch Republic… Can you tell I love it here??? Did I tell you about the fishing??? Jim An Old Parrot Head, In the Conch Republic, Just South of Reality

Response:

I was planning to drive down to the Keys with a friend who was visiting but another friend suggested Ana Maria Island, instead.  I have to say it was one of the nicest beach towns with plenty of places to park and enjoy the area.  It was just a short drive into Sarasota, where there are so many fine restaurants and shopping.  I can’t imagine what the Keys could offer that would make the extra 8 hours driving worthwhile.

Anna Maria Island is a nice place, for sure. But most people don’t go to KW for the beaches or shopping, but rather for the other "scenery" and attractions. It’s like no other place I’ve ever seen. And the drive itself is spectacular, in places. Well worth going through the unspectacular parts, IMO… GB in NC

Response:

There is a seemingly regular beach on Key West, I forget the road but you sort of keep going left around the edge when you first get on the key and you go by all the live-aboard houseboats and then the beach. Reportedly, the beach is made and refreshed with sand that they barge in from the Bahamas…  They used to allow overnite parking in lot across from the beach, but when I was there last about four years ago, no parking after 10pm. But if you are heading for the Keys expecting an endless beach, you will be disappointed in the vista of endless mangrove swamps intermingled with endless human construction.  Lots of interesting stuf hidden in both, however, even a few nice beaches. Four years ago, I watched the sun setting into salt water from Key West on one corner of the Lower 48 and then a few months later I watched the sun setting into salt water from Cape Flattery on the opposite corner… – Hide quoted text — Show quoted text – Oh Contraire…there are some hidden but excellent and large beaches in the Keys!  Bahia Honda is great and the waters are still warm enough for swimming and diving…I know because I was just there doing just that all of last week.  Bahia Honda also has a fantastic RV camping area but reservations are required.  You just can’t really see them from the road as you have to enter the park to reach them.  Just down the road on Sugarloaf Key is the KOA Campground which also has a little beach as do a number of the residential areas on Sugarloaf.  There were plenty of people swimming and snorkeling at each of the beaches I was at last week.   Stopped at "E-Market" and bought lobster tails for $2.75 each along with lbs. of stone crab…absolutely fantastic!  As for Key West…its great for an in-and-out visit but I personally wouldn’t want to spend much time there.  If you want big beautiful "warm" white sand beaches/water…Destin or Panama City in September is the best in this travelers opinion.  Unfortunately, the water is now cold in the Panhandle and rip-tides are prevalent. WJW Questions. 1. If you’ve seen one of the keys, have you seen them all? Pretty much, but you haven’t lived until you have seen the assortment of  aging gray haired teenagers still stuck in the 70s, on Key West. Be sure to  spend a few hours walking around downtown and Mallory Square. 2. Is it worth the time and trouble to drive the 100 miles of the keys? The drive should be a disappointment to anyone who has driven the Gulf  Coast of the panhandle, but it is pretty spectacular in places anyway. Everyone  should do it once. 3. What kind of speeds and delays can one expect from one end of the keys  to the other? There are only a couple places where the speed limit is less than 45, and  even with heavy traffic, most of the trip sticks between 5 under and 5 over the  45 and 55 speed limits. Those used to traveling on 2 lane roads will be  pleased with traffic on Highway 1. 4. Are there lots of red lights, traffic jams, construction delays, etc.? Red lights are minimal, and well timed. Really not much of a factor this  trip. 5. Is there something you know of which is a _must_ see? Duval street, Mallory Square, and the "tall ships". If at all possible,  take a 2-hour sunstet cruise on one of them. $49-$75 each with free beer, drinks,  and champaign. Not a must see, but maybe a must know. There are shuttle busses (I forget  the name, but you’ll see em with "Red line" or "Blue line" lit up on the  front.) It’s $7 (each person) for all day, unlimited on and off. Each "color" goes  one way around the island, so you can move clockways, counter clockwise, or  mix and match to get around to everything you wish to see and do. 6. Is there something we should know about and maybe avoid? Don’t take an RV very far on Highway 1, once you get to Key West. It just  keeps getting tighter until you have major problems. If you get as far as Palm street, turn left (to the left it’s called Bertha or 1st street depending  upon which sign you look at) and get yourself the heck out of there. Bertha  will take you across the key to A1A which will take you back where you came  from. 7. If we changed plans and stayed in a camground in Homestead, can one  drive the keys from there and back in one day without rushing? Next time, we take the MH to Key Largo and spend the night. First thing  the next morning we head for Key West (by car) and spend the whole day,  including the Sunset Cruise on the "Tall Ships", and then drive back to the MH.  Then, we stay on Key Largo until we are tired of it. 8. Can you suggest a reasonably priced hotel/motel which is clean. There is no such thing as a clean hotel/motel in the South. Plan ahead if  you want a hotel, and pay whatever it takes for a room at the Hilton  overlooking Mallory Square and the sunset, so you can sit on the balcony having a  coctail and watching the poor souls fighting each other in the square. If you  insist upon a clean bathroom, take cleaning supplies with you to clean up the  mold growing in the corners. It’s there in the MGM Grand and Treasure Bay in  Biloxi, it’s in 37 different motels we’ve used along I-65, several we’ve stayed in along I-75, it’s in the $1800/week condos along the Gulf, and it’s in the Marriot on Key West. Better yet, take your RV and let the unknowing stay  in dirty motels. We’ve heard so much about the street performers, that we were really  looking forward to that. The only one we had ever seen before was a  juggler/unicyclist we saw in downtown Gaylord, MI this past August during Alpinefest. We were  in town for an Escapees Chapter 6 rally and walked downtown to see the festivities. This guy was pretty good, juggling flaming torches which he  kept going with charcoal lighter fluid. Of course, you can guess who was the first performer we came across in Key West. Yuppers. Same guy, in the same small world. Greatest disappointment. Beaches. I have always had a vision of Key West, bronzed boddies, half naked women,  hard What beaches? We didn’t see any. Eighty degrees outside, sun beating down, sweat pouring, and not a glistening hard body to be seen. What’s up with  that? There _was_ a tiny beach half a block from the "Southern-most bouy", but  you couldn’t fit 3 Volkswagons on it, and there wasn’t a sun seaker in sight. The vast majority of people who didn’t look like tourists, were the "hard bodies" of the 70s, running around barefoot, covered with tatoos, gray  hair, and wrinkles, and looking like Karen Carpenter just before she died. Them,  and the 70s dope smokers, way too many munchies later. We didn’t see a single beach with people on it there, or either way on the trip. There seemed to be an RV park nearly everywere until we got to Key West.  After driving the panhandle and seeing one long giant beach from one end to the other, I was really surprised. The big white "blimp" looking thing is "Fat Albert", high in the air over  the misile tracking station on Cudjoe Key, and he is keeping track of boat  traffic throughout the area. Oh, buy gas in Key Largo at the latest. $1.489 there, compared to $1.779  on Key West. Lon

Response:

VanOstran’s comments on Key West are excellent.  Those who have military privileges can stay on the base at the RV campground or the MLF.  State Parks sre located on several Keys and worth the effort. RVC,USMC

– Hide quoted text — Show quoted text – Questions. 1. If you’ve seen one of the keys, have you seen them all? Pretty much, but you haven’t lived until you have seen the assortment of aging gray haired teenagers still stuck in the 70s, on Key West. Be sure to spend a few hours walking around downtown and Mallory Square. 2. Is it worth the time and trouble to drive the 100 miles of the keys? The drive should be a disappointment to anyone who has driven the Gulf Coast of the panhandle, but it is pretty spectacular in places anyway. Everyone should do it once. 3. What kind of speeds and delays can one expect from one end of the keys to the other? There are only a couple places where the speed limit is less than 45, and even with heavy traffic, most of the trip sticks between 5 under and 5 over the 45 and 55 speed limits. Those used to traveling on 2 lane roads will be pleased with traffic on Highway 1. 4. Are there lots of red lights, traffic jams, construction delays, etc.? Red lights are minimal, and well timed. Really not much of a factor this trip. 5. Is there something you know of which is a _must_ see? Duval street, Mallory Square, and the "tall ships". If at all possible, take a 2-hour sunstet cruise on one of them. $49-$75 each with free beer, drinks, and champaign. Not a must see, but maybe a must know. There are shuttle busses (I forget the name, but you’ll see em with "Red line" or "Blue line" lit up on the front.) It’s $7 (each person) for all day, unlimited on and off. Each "color" goes one way around the island, so you can move clockways, counter clockwise, or mix and match to get around to everything you wish to see and do. 6. Is there something we should know about and maybe avoid? Don’t take an RV very far on Highway 1, once you get to Key West. It just keeps getting tighter until you have major problems. If you get as far as Palm street, turn left (to the left it’s called Bertha or 1st street depending upon which sign you look at) and get yourself the heck out of there. Bertha will take you across the key to A1A which will take you back where you came from. 7. If we changed plans and stayed in a camground in Homestead, can one drive the keys from there and back in one day without rushing? Next time, we take the MH to Key Largo and spend the night. First thing the next morning we head for Key West (by car) and spend the whole day, including the Sunset Cruise on the "Tall Ships", and then drive back to the MH. Then, we stay on Key Largo until we are tired of it. 8. Can you suggest a reasonably priced hotel/motel which is clean. There is no such thing as a clean hotel/motel in the South. Plan ahead if you want a hotel, and pay whatever it takes for a room at the Hilton overlooking Mallory Square and the sunset, so you can sit on the balcony having a coctail and watching the poor souls fighting each other in the square. If you insist upon a clean bathroom, take cleaning supplies with you to clean up the mold growing in the corners. It’s there in the MGM Grand and Treasure Bay in Biloxi, it’s in 37 different motels we’ve used along I-65, several we’ve stayed in along I-75, it’s in the $1800/week condos along the Gulf, and it’s in the Marriot on Key West. Better yet, take your RV and let the unknowing stay in dirty motels. We’ve heard so much about the street performers, that we were really looking forward to that. The only one we had ever seen before was a juggler/unicyclist we saw in downtown Gaylord, MI this past August during Alpinefest. We were in town for an Escapees Chapter 6 rally and walked downtown to see the festivities. This guy was pretty good, juggling flaming torches which he kept going with charcoal lighter fluid. Of course, you can guess who was the first performer we came across in Key West. Yuppers. Same guy, in the same small world. Greatest disappointment. Beaches. I have always had a vision of Key West, bronzed boddies, half naked women, hard What beaches? We didn’t see any. Eighty degrees outside, sun beating down, sweat pouring, and not a glistening hard body to be seen. What’s up with that? There _was_ a tiny beach half a block from the "Southern-most bouy", but you couldn’t fit 3 Volkswagons on it, and there wasn’t a sun seaker in sight. The vast majority of people who didn’t look like tourists, were the "hard bodies" of the 70s, running around barefoot, covered with tatoos, gray hair, and wrinkles, and looking like Karen Carpenter just before she died. Them, and the 70s dope smokers, way too many munchies later. We didn’t see a single beach with people on it there, or either way on the trip. There seemed to be an RV park nearly everywere until we got to Key West. After driving the panhandle and seeing one long giant beach from one end to the other, I was really surprised. The big white "blimp" looking thing is "Fat Albert", high in the air over the misile tracking station on Cudjoe Key, and he is keeping track of boat traffic throughout the area. Oh, buy gas in Key Largo at the latest. $1.489 there, compared to $1.779 on Key West. Lon

Response:

<< I can’t imagine what the Keys could offer that would make the extra 8 hours driving worthwhile. I’m sure there are other mountains with a view almost as good as from Mount Everest — but people go to Key West at least once to have been there.  I agree that there are nicer spots to have a beach vacation. Tom M, wintered in Fort Myers Beach in ‘68 and ‘69 — It may have changed some.

Response:

I was planning to drive down to the Keys with a friend who was visiting but another friend suggested Ana Maria Island, instead.  I have to say it was one of the nicest beach towns with plenty of places to park and enjoy the area.  It was just a short drive into Sarasota, where there are so many fine restaurants and shopping.  I can’t imagine what the Keys could offer that would make the extra 8 hours driving worthwhile. — Nadyne Nelson – Hide quoted text — Show quoted text – I was born and raised in Sarasota, Florida and had never visited Key The first day there everyone kept saying we must see the sunset at the square.  Okee Dokee.  We did and…..?  I grew up watching the sun set in the Gulf of Mexico.  What IS the fascination with sundown in Key West? We, too were disappointed with the lack of beaches on Key West.  Any of the northern keys have beaches.  The Gulf Coast from Naples to Pensacola has real beaches.  You can find one to your satisfaction.

Response:

Oh Contraire…there are some hidden but excellent and large beaches in the Keys!  Bahia Honda is great and the waters are still warm enough for swimming and diving…I know because I was just there doing just that all of last week.  Bahia Honda also has a fantastic RV camping area but reservations are required.  You just can’t really see them from the road as you have to enter the park to reach them.  Just down the road on Sugarloaf Key is the KOA Campground which also has a little beach as do a number of the residential areas on Sugarloaf.  There were plenty of people swimming and snorkeling at each of the beaches I was at last week.   Stopped at "E-Market" and bought lobster tails for $2.75 each along with lbs. of stone crab…absolutely fantastic!  As for Key West…its great for an in-and-out visit but I personally wouldn’t want to spend much time there.  If you want big beautiful "warm" white sand beaches/water…Destin or Panama City in September is the best in this travelers opinion.  Unfortunately, the water is now cold in the Panhandle and rip-tides are prevalent. WJW

– Hide quoted text — Show quoted text – Questions. 1. If you’ve seen one of the keys, have you seen them all? Pretty much, but you haven’t lived until you have seen the assortment of aging gray haired teenagers still stuck in the 70s, on Key West. Be sure to spend a few hours walking around downtown and Mallory Square. 2. Is it worth the time and trouble to drive the 100 miles of the keys? The drive should be a disappointment to anyone who has driven the Gulf Coast of the panhandle, but it is pretty spectacular in places anyway. Everyone should do it once. 3. What kind of speeds and delays can one expect from one end of the keys to the other? There are only a couple places where the speed limit is less than 45, and even with heavy traffic, most of the trip sticks between 5 under and 5 over the 45 and 55 speed limits. Those used to traveling on 2 lane roads will be pleased with traffic on Highway 1. 4. Are there lots of red lights, traffic jams, construction delays, etc.? Red lights are minimal, and well timed. Really not much of a factor this trip. 5. Is there something you know of which is a _must_ see? Duval street, Mallory Square, and the "tall ships". If at all possible, take a 2-hour sunstet cruise on one of them. $49-$75 each with free beer, drinks, and champaign. Not a must see, but maybe a must know. There are shuttle busses (I forget the name, but you’ll see em with "Red line" or "Blue line" lit up on the front.) It’s $7 (each person) for all day, unlimited on and off. Each "color" goes one way around the island, so you can move clockways, counter clockwise, or mix and match to get around to everything you wish to see and do. 6. Is there something we should know about and maybe avoid? Don’t take an RV very far on Highway 1, once you get to Key West. It just keeps getting tighter until you have major problems. If you get as far as Palm street, turn left (to the left it’s called Bertha or 1st street depending upon which sign you look at) and get yourself the heck out of there. Bertha will take you across the key to A1A which will take you back where you came from. 7. If we changed plans and stayed in a camground in Homestead, can one drive the keys from there and back in one day without rushing? Next time, we take the MH to Key Largo and spend the night. First thing the next morning we head for Key West (by car) and spend the whole day, including the Sunset Cruise on the "Tall Ships", and then drive back to the MH. Then, we stay on Key Largo until we are tired of it. 8. Can you suggest a reasonably priced hotel/motel which is clean. There is no such thing as a clean hotel/motel in the South. Plan ahead if you want a hotel, and pay whatever it takes for a room at the Hilton overlooking Mallory Square and the sunset, so you can sit on the balcony having a coctail and watching the poor souls fighting each other in the square. If you insist upon a clean bathroom, take cleaning supplies with you to clean up the mold growing in the corners. It’s there in the MGM Grand and Treasure Bay in Biloxi, it’s in 37 different motels we’ve used along I-65, several we’ve stayed in along I-75, it’s in the $1800/week condos along the Gulf, and it’s in the Marriot on Key West. Better yet, take your RV and let the unknowing stay in dirty motels. We’ve heard so much about the street performers, that we were really looking forward to that. The only one we had ever seen before was a juggler/unicyclist we saw in downtown Gaylord, MI this past August during Alpinefest. We were in town for an Escapees Chapter 6 rally and walked downtown to see the festivities. This guy was pretty good, juggling flaming torches which he kept going with charcoal lighter fluid. Of course, you can guess who was the first performer we came across in Key West. Yuppers. Same guy, in the same small world. Greatest disappointment. Beaches. I have always had a vision of Key West, bronzed boddies, half naked women, hard What beaches? We didn’t see any. Eighty degrees outside, sun beating down, sweat pouring, and not a glistening hard body to be seen. What’s up with that? There _was_ a tiny beach half a block from the "Southern-most bouy", but you couldn’t fit 3 Volkswagons on it, and there wasn’t a sun seaker in sight. The vast majority of people who didn’t look like tourists, were the "hard bodies" of the 70s, running around barefoot, covered with tatoos, gray hair, and wrinkles, and looking like Karen Carpenter just before she died. Them, and the 70s dope smokers, way too many munchies later. We didn’t see a single beach with people on it there, or either way on the trip. There seemed to be an RV park nearly everywere until we got to Key West. After driving the panhandle and seeing one long giant beach from one end to the other, I was really surprised. The big white "blimp" looking thing is "Fat Albert", high in the air over the misile tracking station on Cudjoe Key, and he is keeping track of boat traffic throughout the area. Oh, buy gas in Key Largo at the latest. $1.489 there, compared to $1.779 on Key West. Lon

Response:

Questions. 1. If you’ve seen one of the keys, have you seen them all? Pretty much, but you haven’t lived until you have seen the assortment of aging gray haired teenagers still stuck in the 70s, on Key West. Be sure to spend a few hours walking around downtown and Mallory Square.

(Snipped Lon’s EXCELLENT comments on Key West.) I was born and raised in Sarasota, Florida and had never visited Key West until, while living in Alaska, we flew to Orlando to visit Mickey (sans kids) with a week down the center of the state and three days in Key West. What an absolute disappointment.  Buffet’s place is a hole in the wall where Parrothead wannabees hang trying to look cool  The memory of Hemmingway is just that – a tawdry memory. The first day there everyone kept saying we must see the sunset at the square.  Okee Dokee.  We did and…..?  I grew up watching the sun set in the Gulf of Mexico.  What IS the fascination with sundown in Key West? We, too were disappointed with the lack of beaches on Key West.  Any of the northern keys have beaches.  The Gulf Coast from Naples to Pensacola has real beaches.  You can find one to your satisfaction. It may have been Margaritaville at one time.  It is now just a shabby theme park with no parking. — Dave Thompson

Response:

Questions. 1. If you’ve seen one of the keys, have you seen them all?

Pretty much, but you haven’t lived until you have seen the assortment of aging gray haired teenagers still stuck in the 70s, on Key West. Be sure to spend a few hours walking around downtown and Mallory Square. 2. Is it worth the time and trouble to drive the 100 miles of the keys?

The drive should be a disappointment to anyone who has driven the Gulf Coast of the panhandle, but it is pretty spectacular in places anyway. Everyone should do it once. 3. What kind of speeds and delays can one expect from one end of the keys to the other?

There are only a couple places where the speed limit is less than 45, and even with heavy traffic, most of the trip sticks between 5 under and 5 over the 45 and 55 speed limits. Those used to traveling on 2 lane roads will be pleased with traffic on Highway 1. 4. Are there lots of red lights, traffic jams, construction delays, etc.?

Red lights are minimal, and well timed. Really not much of a factor this trip. 5. Is there something you know of which is a _must_ see?

Duval street, Mallory Square, and the "tall ships". If at all possible, take a 2-hour sunstet cruise on one of them. $49-$75 each with free beer, drinks, and champaign. Not a must see, but maybe a must know. There are shuttle busses (I forget the name, but you’ll see em with "Red line" or "Blue line" lit up on the front.) It’s $7 (each person) for all day, unlimited on and off. Each "color" goes one way around the island, so you can move clockways, counter clockwise, or mix and match to get around to everything you wish to see and do. 6. Is there something we should know about and maybe avoid?

Don’t take an RV very far on Highway 1, once you get to Key West. It just keeps getting tighter until you have major problems. If you get as far as Palm street, turn left (to the left it’s called Bertha or 1st street depending upon which sign you look at) and get yourself the heck out of there. Bertha will take you across the key to A1A which will take you back where you came from. 7. If we changed plans and stayed in a camground in Homestead, can one drive the keys from there and back in one day without rushing?

Next time, we take the MH to Key Largo and spend the night. First thing the next morning we head for Key West (by car) and spend the whole day, including the Sunset Cruise on the "Tall Ships", and then drive back to the MH. Then, we stay on Key Largo until we are tired of it. 8. Can you suggest a reasonably priced hotel/motel which is clean.

There is no such thing as a clean hotel/motel in the South. Plan ahead if you want a hotel, and pay whatever it takes for a room at the Hilton overlooking Mallory Square and the sunset, so you can sit on the balcony having a coctail and watching the poor souls fighting each other in the square. If you insist upon a clean bathroom, take cleaning supplies with you to clean up the mold growing in the corners. It’s there in the MGM Grand and Treasure Bay in Biloxi, it’s in 37 different motels we’ve used along I-65, several we’ve stayed in along I-75, it’s in the $1800/week condos along the Gulf, and it’s in the Marriot on Key West. Better yet, take your RV and let the unknowing stay in dirty motels. We’ve heard so much about the street performers, that we were really looking forward to that. The only one we had ever seen before was a juggler/unicyclist we saw in downtown Gaylord, MI this past August during Alpinefest. We were in town for an Escapees Chapter 6 rally and walked downtown to see the festivities. This guy was pretty good, juggling flaming torches which he kept going with charcoal lighter fluid. Of course, you can guess who was the first performer we came across in Key West. Yuppers. Same guy, in the same small world. Greatest disappointment. Beaches. I have always had a vision of Key West, bronzed boddies, half naked women, hard What beaches? We didn’t see any. Eighty degrees outside, sun beating down, sweat pouring, and not a glistening hard body to be seen. What’s up with that? There _was_ a tiny beach half a block from the "Southern-most bouy", but you couldn’t fit 3 Volkswagons on it, and there wasn’t a sun seaker in sight. The vast majority of people who didn’t look like tourists, were the "hard bodies" of the 70s, running around barefoot, covered with tatoos, gray hair, and wrinkles, and looking like Karen Carpenter just before she died. Them, and the 70s dope smokers, way too many munchies later. We didn’t see a single beach with people on it there, or either way on the trip. There seemed to be an RV park nearly everywere until we got to Key West. After driving the panhandle and seeing one long giant beach from one end to the other, I was really surprised. The big white "blimp" looking thing is "Fat Albert", high in the air over the misile tracking station on Cudjoe Key, and he is keeping track of boat traffic throughout the area. Oh, buy gas in Key Largo at the latest. $1.489 there, compared to $1.779 on Key West. Lon

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Question:

weekly minor binge of ice cream, which may have caused this number to be where it’s..maybe not.

What about your bloody 800 odd calorie breakfast three times a

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I got my recent cholesterol test back and I was slightly mystified. Over the last 3 or 4 years my cholesterol has gone from 170 up to this recent test of 239

Dear Steve,     Your HDL of 89 is very impressive and protective.  A little more info would help.  Age?  Smoking?  Family history of early heart disease in brothers sisters mom or dad?  Do you have high blood pressure or diabetes?  Happy to give you concrete and likely reassuring info with your response. — josh Steinberg MD, Syracuse

Response:

Smoking?

This question on a runners NG? Look for a QUALIFIED person to take advice from. Josh here has been "on the pipe" as they say… Bill R.

Response:

- Hide quoted text — Show quoted text – I got my recent cholesterol test back and I was slightly mystified. Over the last 3 or 4 years my cholesterol has gone from 170 up to this recent test of 239, which I thought was a little higher. I thought it was going to come closer into 200, but my diet has been incredibly good and other than a weekly minor binge of ice cream, which may have caused this number to be where it’s..maybe not. I am a little disappointed. Now the ratio is the most important and my LDL, the bad cholesterol was up around 139, which is a little high, but my HDL the good cholesterol was 89, which is awfully high and very good. I suppose that comes from running and exercising. My trygliderides are only at 45 so my ratios are pretty darn good  I think and I was just curious what you thought about the fact that I may be able to discount the 239 because of such good ratios and the high HDL. Now that’s not going to give me any license to go out and continue to have that weekly half gallon of ice cream or whatever. I’m still somewhat a little disappointed about the 239 but I was just curious what you thoughts were on this and how other runner’s cholesterol comes in comparatively. I know I can get it down to 200 or a little below. I used to be there. I do everyday have tremendous amounts of garlic, flax seed, and wheat germ,spinach fish chicken. Although I just started having red meat in my diet for the first time in 10 years about a month ago, it’s very lean red meat and only maybe 8 to 10 ounces a week because I was so low on iron. I can’t believe that’s had much of an impact on the cholesterol, I don’t really plan to change that either considering the iron that I lose through running. I appreciate what your thoughts might be. I was curious how all of you might think about this. Have a great day and I appreciate any input you might have good or bad. Thank you!

I think you are kidding yourself with that binge of ice cream once a week. Keep a record and I’d bet you have all sorts of hydrogenated crap consumed over a week. I eat lots of almonds and walnuts and my total cholesterol is 95. If you have done everything and yours is still high you might need drug intervention.

Response:

Unfortunately you do not know which 2 people will have the MI!

"augur, auspex, forecaster, foreseer, foreteller, haruspex, Nostradamus, predictor, prognosticator."  You are correct, I don’t see doctor in the list but I’ll bet Miss Cleo knows. -Doug

Response:

Unfortunately you do not know which 2 people will have the MI!

– Hide quoted text — Show quoted text – this recent test of 239 Dear Steve,     Your risk of heart disease over the next 10 years is 2%.  That means that for 100 men just like you, only 2 will have cardiac events over the next 10 years.  Let’s say I put you on a cholesterol lowering drug, which across the board lowers rates of cardiac events by 1/3rd.  That would drop your risk to 1.3% over 10 years.  If I treated 1000 men just like you with cholesterol meds, 13 would have heart attacks instead of 20.  In other words, I’d have to treat 133 men like you just to change one man’s outcome.  Treating the other 132 with medicine would not change their good healthy outcome.  In treating those 133 men to avoid 1 heart attack, we’d use medicine which costs at least $60/month, along with repeat blood tests of your cholesterol and blood tests of your liver to make sure the medicine wasn’t toxic to your liver (main side effect). The medicine would cost about $720/year per man, then add cholesterol and liver testing about 2-3 times per year at $50 each ($300/year per man) then add your doctors visits to tell you how important this all is and how well or not well you do on your blood tests at probably $60 each visit for 3 visits a year perhaps (another $180/year per man), we’re now up to about $1200 per man per year, times 133 men times 10 years equals $1,596,000 dollars spent to avoid 1 heart attack.     Why am I hitting you with the numbers?  Because I want to impress you at how healthy you are and how staggeringly many people like you we doctors would have to treat just to change one outcome.  And that’s all because at your age of 41, with excellent blood pressure, with no smoking, and no family history, you have an extraordinarily low risk of heart disease.     Thus, I would recommend that you need not concern yourself with your cholesterol.  When you are 61 rather than 41, a cholesterol of 239 might confer more risk (more 60 year olds have heart disease than 40 year olds), so maybe in the future it will be important, but for now it really is not.     Of course, your doctor knows you, your health, and your values best, so please bring your concerns to him or her and make a plan you are both comfortable with.     Best of luck. — Josh Steinberg MD, Syracuse

Response:

I am near borderline for total, but "off-scale" for HDL. The printouts says ratio LDL/HDL 3 to 5 is healthy, but in the 2’s.

Response:

this recent test of 239

Dear Steve,     Your risk of heart disease over the next 10 years is 2%.  That means that for 100 men just like you, only 2 will have cardiac events over the next 10 years.  Let’s say I put you on a cholesterol lowering drug, which across the board lowers rates of cardiac events by 1/3rd.  That would drop your risk to 1.3% over 10 years.  If I treated 1000 men just like you with cholesterol meds, 13 would have heart attacks instead of 20.  In other words, I’d have to treat 133 men like you just to change one man’s outcome.  Treating the other 132 with medicine would not change their good healthy outcome.  In treating those 133 men to avoid 1 heart attack, we’d use medicine which costs at least $60/month, along with repeat blood tests of your cholesterol and blood tests of your liver to make sure the medicine wasn’t toxic to your liver (main side effect).  The medicine would cost about $720/year per man, then add cholesterol and liver testing about 2-3 times per year at $50 each ($300/year per man) then add your doctors visits to tell you how important this all is and how well or not well you do on your blood tests at probably $60 each visit for 3 visits a year perhaps (another $180/year per man), we’re now up to about $1200 per man per year, times 133 men times 10 years equals $1,596,000 dollars spent to avoid 1 heart attack.     Why am I hitting you with the numbers?  Because I want to impress you at how healthy you are and how staggeringly many people like you we doctors would have to treat just to change one outcome.  And that’s all because at your age of 41, with excellent blood pressure, with no smoking, and no family history, you have an extraordinarily low risk of heart disease.     Thus, I would recommend that you need not concern yourself with your cholesterol.  When you are 61 rather than 41, a cholesterol of 239 might confer more risk (more 60 year olds have heart disease than 40 year olds), so maybe in the future it will be important, but for now it really is not.     Of course, your doctor knows you, your health, and your values best, so please bring your concerns to him or her and make a plan you are both comfortable with.     Best of luck. — Josh Steinberg MD, Syracuse

Response:

all sorts of hydrogenated crap consumed over a week no way

– Hide quoted text — Show quoted text – I got my recent cholesterol test back and I was slightly mystified. Over the last 3 or 4 years my cholesterol has gone from 170 up to this recent test of 239, which I thought was a little higher. I thought it was going to come closer into 200, but my diet has been incredibly good and other than a weekly minor binge of ice cream, which may have caused this number to be where it’s..maybe not. I am a little disappointed. Now the ratio is the most important and my LDL, the bad cholesterol was up around 139, which is a little high, but my HDL the good cholesterol was 89, which is awfully high and very good. I suppose that comes from running and exercising. My trygliderides are only at 45 so my ratios are pretty darn good  I think and I was just curious what you thought about the fact that I may be able to discount the 239 because of such good ratios and the high HDL. Now that’s not going to give me any license to go out and continue to have that weekly half gallon of ice cream or whatever. I’m still somewhat a little disappointed about the 239 but I was just curious what you thoughts were on this and how other runner’s cholesterol comes in comparatively. I know I can get it down to 200 or a little below. I used to be there. I do everyday have tremendous amounts of garlic, flax seed, and wheat germ,spinach fish chicken. Although I just started having red meat in my diet for the first time in 10 years about a month ago, it’s very lean red meat and only maybe 8 to 10 ounces a week because I was so low on iron. I can’t believe that’s had much of an impact on the cholesterol, I don’t really plan to change that either considering the iron that I lose through running. I appreciate what your thoughts might be. I was curious how all of you might think about this. Have a great day and I appreciate any input you might have good or bad. Thank you! I think you are kidding yourself with that binge of ice cream once a week. Keep a record and I’d bet you have all sorts of hydrogenated crap consumed over a week. I eat lots of almonds and walnuts and my total cholesterol is 95. If you have done everything and yours is still high you might need drug intervention.

Response:

43 yo   bp=105/70 no smoke…ecxcellent family history rhr=41bpm

– Hide quoted text — Show quoted text – I got my recent cholesterol test back and I was slightly mystified. Over the last 3 or 4 years my cholesterol has gone from 170 up to this recent test of 239 Dear Steve,     Your HDL of 89 is very impressive and protective.  A little more info would help.  Age?  Smoking?  Family history of early heart disease in brothers sisters mom or dad?  Do you have high blood pressure or diabetes?  Happy to give you concrete and likely reassuring info with your response. — josh Steinberg MD, Syracuse

Response:

actually it is 575..

– Hide quoted text — Show quoted text – weekly minor binge of ice cream, which may have caused this number to be where it’s..maybe not. What about your bloody 800 odd calorie breakfast three times a

Response:

dork Bill R.

Response:

I got my recent cholesterol test back and I was slightly mystified. Over the last 3 or 4 years my cholesterol has gone from 170 up to this recent test of 239, which I thought was a little higher. I thought it was going to come closer into 200, but my diet has been incredibly good and other than a weekly minor binge of ice cream, which may have caused this number to be where it’s..maybe not. I am a little disappointed. Now the ratio is the most important and my LDL, the bad cholesterol was up around 139, which is a little high, but my HDL the good cholesterol was 89, which is awfully high and very good. I suppose that comes from running and exercising. My trygliderides are only at 45 so my ratios are pretty darn good  I think and I was just curious what you thought about the fact that I may be able to discount the 239 because of such good ratios and the high HDL. Now that’s not going to give me any license to go out and continue to have that weekly half gallon of ice cream or whatever. I’m still somewhat a little disappointed about the 239 but I was just curious what you thoughts were on this and how other runner’s cholesterol comes in comparatively. I know I can get it down to 200 or a little below. I used to be there. I do everyday have tremendous amounts of garlic, flax seed, and wheat germ,spinach fish chicken. Although I just started having red meat in my diet for the first time in 10 years about a month ago, it’s very lean red meat and only maybe 8 to 10 ounces a week because I was so low on iron. I can’t believe that’s had much of an impact on the cholesterol, I don’t really plan to change that either considering the iron that I lose through running. I appreciate what your thoughts might be. I was curious how all of you might think about this. Have a great day and I appreciate any input you might have good or bad. Thank you!

Response:

Question:

…still waiting for your cites for these assertions…. You realize, of course, that some ASAD posters have been waiting for around 6 years for Sir Artie/Dr. Frager to post cites which support his claims.

<G  I have been around here for quite a few years myself…and have asked this question of him before… That means there’s quite a backlog. If Sir Artie used the FIFO method of providing citations, you’re going to waiting a bit longer.

Didn’t "Hell freeze over" already when Fleetwood Mac went on tour? (Or was that the Eagles that had the "Hell Froze Over" tour?) <G  I just post that line to tweak Fartie, and to let the newbies in on what a joke he is….. — Buny be normal." ~ Albert Camus

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– Hide quoted text — Show quoted text – in But rest assured that our side is winning and the truth is getting out.  More and more parents are just saying NO to drugs that are prescribed to "control" a very young childs brain.  Of course those same drugs also destroy that brain in the meantime. …still waiting for your cites for these assertions…. You realize, of course, that some ASAD posters have been waiting for around 6 years for Sir Artie/Dr. Frager to post cites which support his claims. That means there’s quite a backlog. If Sir Artie used the FIFO method of providing citations, you’re going to waiting a bit longer.

What do you mean ‘a bit?’ Godot showed up faster. If I were a Christian, I would anticipate the Second Coming before getting an answer. If I were and astrophysicist, I would expect the sun to nova first…

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But rest assured that our side is winning and the truth is getting out.  More and more parents are just saying NO to drugs that are prescribed to "control" a very young childs brain.  Of course those same drugs also destroy that brain in the meantime. …still waiting for your cites for these assertions….

You realize, of course, that some ASAD posters have been waiting for around 6 years for Sir Artie/Dr. Frager to post cites which support his claims. That means there’s quite a backlog. If Sir Artie used the FIFO method of providing citations, you’re going to waiting a bit longer. Nancy Unique, like everyone else

Response:

But rest assured that our side is winning and the truth is getting out.  More and more parents are just saying NO to drugs that are prescribed to "control" a very young childs brain.  Of course those same drugs also destroy that brain in the meantime.

…still waiting for your cites for these assertions…. — Buny be normal." ~ Albert Camus

Response:

Thank you for your most excellent article, this proves that everything that I have written about for many years is 100% accurate. Of course the Proby/Spam Bunny Cult will disregard this for obvious reasons, they hate things like facts and data. But rest assured that our side is winning and the truth is getting out.  More and more parents are just saying NO to drugs that are prescribed to "control" a very young childs brain.  Of course those same drugs also destroy that brain in the meantime. Thanks again, Sir Arthur – Hide quoted text — Show quoted text -x-no-archive: yes Drug Firms’ Control Over Data Raises Concerns — Lancet Article http://www.medscape.com/viewarticle/443862?mpid=5617 By Doug Macron NEW YORK (Reuters Health) Oct 31 – Drug firms have become the largest sponsors of medical research, generating vast amounts of valuable information through their efforts — but the companies’ enormous control over when, where and how that data is reported may not serve patients’ best interests, according to the authors of a report in the latest issue of The Lancet. The pharmaceutical industry dedicates more time and resources to creating, gathering and disseminating information than to actually producing medicines, the authors write in the report. In part, drugmakers do so in order to satisfy licensing requirements, protect patents and obtain regulatory approvals. But companies also use the data to promote sales and educate patients and physicians about their medicines, in the process influencing prescribing practices and the direction of medical research. In addition, only select data is made publically available through papers in medical journals, presentations at medical conferences or product labeling, the authors write in their report, which focuses specifically on multinational drug firms. Much of the data that drug companies produce is protected by intellectual-property laws, they note. The fact that the information is often selectively released or kept secret raises concerns about whether patients’ and the public’s best interests are being adequately addressed, they maintain. "When things go well in terms of a product, there’s no lack of information about what a product does or how well it functions," Dr. Ike Iheanacho, deputy editor of Drug and Therapeutics Bulletin and co-author of the Lancet report, told Reuters Health during a telephone interview. "What we’re talking about is lack of openness when a product doesn’t perform so well or it doesn’t perform as well as a competitor." The authors note that companies view publication of clinical data in medical journals as key in raising awareness about a drug. "However, to improve sales, it is also crucial that the published report shows the company’s product in a favorable light," they point out. "Publication is especially helpful if the article is published around the time of the product’s launch," the Lancet report reads. "Echoing these aspirations, trials with negative results tend to be published much later than those with more positive conclusions." Moreover, the authors note, "conclusions of trials sponsored by drug companies, rather than by other sources, tend to be more favorable to the sponsor’s product." It is unclear why company-sponsored studies are so often favorable, the authors write, although an inherent bias in trial design is possible. The Lancet report also notes that by being responsible for so much of the medical research that is conducted, transnational pharmaceutical companies can influence the direction of medicine towards drug treatment, rather than non-drug intervention. The sheer quantity of drug-industry research might inappropriately impact healthcare policies, leading them away from "tried, familiar, and usually cheaper approaches, to novel, unfamiliar, and generally more expensive alternatives that offer no real clinical advantage," the authors write. "Moreover, as increasing numbers of medical researchers are drawn to the industry, alternative voices and opinions can become muted, and novel avenues of research might be overlooked," the article reads. The authors worry about the dearth of "independent, non-commercial sources of information" in many countries, which they say leaves prescribers "heavily reliant on drug-company representatives for their information." Independent medical research with support from non-industry sources, such as governments, should be encouraged, Dr. Iheanacho told Reuters Health. However, he conceded that funding for such research can be very hard to come by. The situation is made worse by "weak" regulations controlling drug firms’ promotions, the Lancet article suggests. "In many countries, regulatory authorities are either absent or ineffective, and in industrialized countries, they typically devolve much of the policing to the industry itself," the report states. While transnational drugmakers’ promotions to physicians and consumers are valuable for raising awareness, they also have the potential to do damage, the authors believe. "Rational prescribing is inevitably threatened when, for example, opinion-leaders are briefed, promoted, cultured, and supported by manufacturers," the authors write. They cite as troublesome drug firms’ funding of patient-advocacy groups, noting that Viagra manufacturer Pfizer Inc. supports the Impotence Association and the Men’s Health Forum in the UK. Similarly, the authors are concerned about the effect that drug-company gifts might have on doctors’ prescribing patterns. In the end, the Lancet report concludes, pharmaceutical companies’ investment in information is "time and money well spent. However, the huge scale of work involved, lack of openness, accompanying duplication, and distortion of the overall research effort and resulting messages make the business of information-generation inefficient and threaten patients’ interests." "There’s nothing in our article that says the pharmaceutical industry shouldn’t conduct research," Dr. Iheanacho said during the interview. "One just has to be aware of what the consequences of having an industry-dominated research agenda are." The Lancet article is the first in a planned series of four focusing on the role of the pharmaceutical industry in medicine. —- Reuters Health Information 2002.

Question:

Jan, this is the self-examination, by CM, that i speak of. Where, oh, where, is the self-examination on this level of AltMed? Please! Show me! Me thinks  this is an excuse for what is happening in organized medicine. AltMed is fairly new, it all takes time.

Excuses, excuses, excuses…bugus ones at that! Chiropractic is over 100 years old. Herbalism, according to the salescreeps is thousands of years old, etc. etc. etc. Deal with the facts, THATY HAVE BEEN GOING ON FOR A LONG TIME,,,,,,,,,,,,

I will deal with what I want, when and how I want to.

Response:

Jan, this is the self-examination, by CM, that i speak of. Where, oh, where, is the self-examination on this level of AltMed? Please! Show me!

Me thinks  this is an excuse for what is happening in organized medicine. AltMed is fairly new, it all takes time. Deal with the facts, THATY HAVE BEEN GOING ON FOR A LONG TIME,,,,,,,,,,,, but the companies ****’ enormous control over when, where and how that data is reported may not serve patients’ best interests,****

My word, NOT  the best interest of patients. ****only select data*****  is made publically available through papers in medical journals, presentations at medical conferences or product labeling, the authors write in their report, which focuses specifically on multinational drug firms. Much of the data that drug companies produce is

protected by intellectual-property laws, they note. Tell me, Mark, is this HONEST??? HOW CAN ONE TRUST *ORGANIZED MEDICINE* Jan

Response:

Jan, this is the self-examination, by CM, that i speak of. Where, oh, where, is the self-examination on this level of AltMed? Please! Show me!

– Hide quoted text — Show quoted text – Drug Firms’ Control Over Data Raises Concerns — Lancet Article By Doug Macron NEW YORK (Reuters Health) Oct 31 – Drug firms have become the largest sponsors of medical research, generating vast amounts of valuable information through their efforts — but the companies ****’ enormous control over when, where and how that data is reported may not serve patients’ best interests,****  according to the authors of a report in the latest issue of The Lancet. The pharmaceutical industry dedicates more time and resources to creating, gathering and disseminating information than to actually producing medicines, the authors write in the report. In part, drugmakers do so in order to satisfy licensing requirements, protect patents and obtain regulatory approvals. Uh huh,,,,,,,,,,, But companies also use the data to promote sales and educate patients and physicians about their medicines, in the process ***influencing prescribing practices and the direction of medical research.*** In addition, ****only select data*****  is made publically available through papers in medical journals, presentations at medical conferences or product labeling, the authors write in their report, which focuses specifically on multinational drug firms. Much of the data that drug companies produce is protected by intellectual-property laws, they note. rest at link: http://tinyurl.com/2hu4 Welcome to *Organized medicine* Jan

Response:

Welcome to *Organized medicine* Jan

Jan, who made you the welcome comittee?   You don’t have the vaguest grasp of the topic and seem to be motivated by an insatiable need for attention.

Response:

Drug firms have become the largest sponsors of medical research, generating vast amounts of valuable information through their efforts — but the companies ****’ enormous control over when, where and how that data is reported may not serve patients’ best interests,**** according to the authors of a report in the latest issue of The Lancet.

[snip] As long as they continue to publish such articles, there is hope… Is there? It is so accepted, they can state it and nobody from organized medicine cares,

I don’t know how many of the MDs think about these things, but I am sure that some do. just as with the doctor who remains on staff after committing all kinds of frauds.

The head of the Human Research Protections has resigned. So, changes are on the way,  and it is not as if nothing has happened. http://www.medscape.com/viewarticle/443322

Response:

- Hide quoted text — Show quoted text – Drug firms have become the largest sponsors of medical research, generating vast amounts of valuable information through their efforts — but the companies ****’ enormous control over when, where and how that data is reported may not serve patients’ best interests,**** according to the authors of a report in the latest issue of The Lancet. The pharmaceutical industry dedicates more time and resources to creating, gathering and disseminating information than to actually producing medicines, the authors write in the report. In part, drugmakers do so in order to satisfy licensing requirements, protect patents and obtain regulatory approvals. Uh huh,,,,,,,,,,, But companies also use the data to promote sales and educate patients and physicians about their medicines, in the process ***influencing prescribing practices and the direction of medical research.*** In addition, ****only select data***** is made publically available through papers in medical journals, presentations at medical conferences or product labeling, the authors write in their report, which focuses specifically on multinational drug firms. Much of the data that drug companies produce is protected by intellectual-property laws, they note. Welcome to *Organized medicine* Jan The report was published *by* "organized med", Jan. It is not from some "alt" web site, it is from the Lancet, the main medical Journal of the U.K.

Yes, I realize that. They write many articles as the above. As long as they continue to publish such articles, there is hope…

Is there? It is so accepted, they can state it and nobody from organized medicine cares, just as with the doctor who remains on staff after committing all kinds of frauds. (Earlier this year, however, the Med Journal NEJM, noted they could not find sufficient independent writers to maintain the standard they had set.) Here are more excerpts: "The fact that the information is often selectively released or kept secret raises concerns about whether patients’ and the public’s best interests are being adequately addressed, they maintain."

YES! "The Lancet report also notes that by being responsible for so much of the medical research that is conducted, transnational pharmaceutical companies can influence the direction of medicine towards drug treatment, rather than non-drug intervention."

INDEED. "Moreover, as increasing numbers of medical researchers are drawn to the industry, alternative voices and opinions can become muted, and novel avenues of research might be overlooked," the article reads. "Rational prescribing is inevitably threatened when, for example, opinion-leaders are briefed, promoted, cultured, and supported by manufacturers," the authors write. "There’s nothing in our article that says the pharmaceutical industry shouldn’t conduct research," Dr. Iheanacho said during the interview.

Of course. Conducting and selecting ONLY  select data,,,,,,,,,,,,is DISHONEST. "One just has to be aware of what the consequences of having an industry-dominated research agenda are." http://tinyurl.com/2hu4

INDEED,,,,,,,,,,,, Welcome  to *organized medicine* Jan

Response:

– Hide quoted text — Show quoted text – Drug firms have become the largest sponsors of medical research, generating vast amounts of valuable information through their efforts — but the companies ****’ enormous control over when, where and how that data is reported may not serve patients’ best interests,**** according to the authors of a report in the latest issue of The Lancet. The pharmaceutical industry dedicates more time and resources to creating, gathering and disseminating information than to actually producing medicines, the authors write in the report. In part, drugmakers do so in order to satisfy licensing requirements, protect patents and obtain regulatory approvals. Uh huh,,,,,,,,,,, But companies also use the data to promote sales and educate patients and physicians about their medicines, in the process

 ***influencing prescribing practices and the direction of medical research.*** In addition,

 ****only select data***** is made publically available through papers in medical journals, presentations at medical conferences or product labeling, the authors write in their report, which focuses specifically on multinational drug firms. Much of the data that drug companies produce is protected by intellectual-property laws, they note. Welcome to *Organized medicine* Jan

The report was published *by* "organized med", Jan. It is not from some "alt" web site, it is from the Lancet, the main medical Journal of the U.K. As long as they continue to publish such articles, there is hope… (Earlier this year, however, the Med Journal NEJM, noted they could not find sufficient independent writers to maintain the standard they had set.) Here are more excerpts: "The fact that the information is often selectively released or kept secret raises concerns about whether patients’ and the public’s best interests are being adequately addressed, they maintain." "The Lancet report also notes that by being responsible for so much of the medical research that is conducted, transnational pharmaceutical companies can influence the direction of medicine towards drug treatment, rather than non-drug intervention." "Moreover, as increasing numbers of medical researchers are drawn to the industry, alternative voices and opinions can become muted, and novel avenues of research might be overlooked," the article reads. "Rational prescribing is inevitably threatened when, for example, opinion-leaders are briefed, promoted, cultured, and supported by manufacturers," the authors write. "There’s nothing in our article that says the pharmaceutical industry shouldn’t conduct research," Dr. Iheanacho said during the interview. "One just has to be aware of what the consequences of having an industry-dominated research agenda are." http://tinyurl.com/2hu4

Response:

Drug Firms’ Control Over Data Raises Concerns — Lancet Article By Doug Macron NEW YORK (Reuters Health) Oct 31 – Drug firms have become the largest sponsors of medical research, generating vast amounts of valuable information through their efforts — but the companies

****’ enormous control over when, where and how that data is reported may not serve patients’ best interests,****

 according to the authors of a report in the latest issue of The Lancet. The pharmaceutical industry dedicates more time and resources to creating, gathering and disseminating information than to actually producing medicines, the authors write in the report. In part, drugmakers do so in order to satisfy licensing requirements, protect patents and obtain regulatory approvals.

Uh huh,,,,,,,,,,, But companies also use the data to promote sales and educate patients and physicians about their medicines, in the process ***influencing prescribing practices and the direction of medical research.*** In addition, ****only select data*****

 is made publically available through papers in medical journals, presentations at medical conferences or product labeling, the authors write in their report,

which focuses specifically on multinational drug firms. Much of the data that drug companies produce is protected by intellectual-property laws, they note. rest at link: http://tinyurl.com/2hu4

Welcome to *Organized medicine* Jan

Response:

Drug Firms’ Control Over Data Raises Concerns — Lancet Article By Doug Macron NEW YORK (Reuters Health) Oct 31 – Drug firms have become the largest sponsors of medical research, generating vast amounts of valuable information through their efforts — but the companies’ enormous control over when, where and how that data is reported may not serve patients’ best interests, according to the authors of a report in the latest issue of The Lancet. The pharmaceutical industry dedicates more time and resources to creating, gathering and disseminating information than to actually producing medicines, the authors write in the report. In part, drugmakers do so in order to satisfy licensing requirements, protect patents and obtain regulatory approvals. But companies also use the data to promote sales and educate patients and physicians about their medicines, in the process influencing prescribing practices and the direction of medical research. In addition, only select data is made publically available through papers in medical journals, presentations at medical conferences or product labeling, the authors write in their report, which focuses specifically on multinational drug firms. Much of the data that drug companies produce is protected by intellectual-property laws, they note. rest at link: http://tinyurl.com/2hu4

Response:

Question:

– Hide quoted text — Show quoted text – <what others have so firm and stable <is for us but an unattainable fable <though in life to the new and shiny paths we do tend <remember always that the best of me to you I will lend This was beautiful. The only time I feel poetic is when I slip below the "red line" as you put. I long for and despise, that fickled path of lows and highs. But when I sail that tacking ship, and my hand on the tiller, slip. I know my way will not waver, for I know a flotilla is my savior. HoPper

Amazing Hopper – clearly our heads are similar. even your meter poetically is the same as mine when slipping below the red line .. I just wish I had written down more of them … I suffered and didn’t enjoy it in the past and so tried to ignore them as they flowed. Still don’t enjoy it! but at least i have some of them afterwards. Doug

Response:

Yes the parallels are running a bit too close here Hop .. I’m afraid I’m down myself again (as the time shows). I’m amazed at how hard it is to change even with the meds. That is in fact the main advice i give to those with BP – watch your own mind. Our ability to rationalize away things and not see patterns is as amazing as our ability to create beauty and pattern where others don’t see it. My stresses and strains are a bit different though. As an academic there will be no getting away fromt he computer, but I too have had to work hard to learn not to allow myself to feel stress that in fact most others don’t put on me. Of late I go back and forth between incredible sex drive and poetic loneliness. Ever get tired of the cycle. I generally live with and even enjoy this ‘disease’ … but tonight. I’m tired. I want off the roller coaster. Fuck. going to try and sleep .. and hope for a reprieve tomorrow, d. PS for those who can relate … here is the shit that pours out of me when I go under the red line … it’ll keep me up all night and I can’t stop it from coming … this one incidentally is to myself (there is no other person really) … at least I learned to start writing them down … though one is never sure no choice this time, I’m the whore back again i do crawl for here is best still to fall heat and ice like desire and confusion so love and hate trade places in delusion moments of distaste, dismissal, and even disgust mingle with those of liking, longing and even lust this time it is I that kneels humbled below your storm unsure and trembling I gaze up at that unstable form which of the many fronts will move in over me now? i do love them all and yet will you ever see how? along our weathered path warm breezes freeze through fear all that you desire how to explain this strange math when cold winds create tears making you want to reach higher? from confidences abounding to embarrassed confusions astounding incapable of building the fortress which you must for intolerable soon will be what you have to trust yet in my chest blow too such moods so weathered now my soul a clear day, then a storm untethered loathing and loving all the same seasons I too fail to maim i admit that around us confusion reigns and see no point otherwise to feign loving and loathing, rising and falling no clear language of love, I’m afraid, will give us calling and yet one fact I admit I’m unable to hide and I say it here last as amidst the confusion it arose like a guide our weathered path seems somehow true for at its end stands always you if I believe that I’m away – blown by a wind that takes me astray it is not long till I do see – I miss this strange path for you and me what others have so firm and stable is for us but an unattainable fable though in life to the new and shiny paths we do tend remember always that the best of me to you I will lend and if we build amidst the sun and rain a world we share together thus as sane on this path that we will call our own i’ll walk with you forever toward a world we’ve never known we’d walk then run then soar to a world in which the weather mattered no more though hope rides in and out on the swells of time i see and feel at present a bright hope of mine to destiny and fate, for now I shall not bend and so my dear if nothing else it is this poem that I do send too confused to call a heart that you have earned it is that same repeating start to which you too have turned – Hide quoted text — Show quoted text – I agree with all of this. I am still trying to control my eating. Caffeine and cigarettes are my main weakness, but I am just getting stable enough on a long term basis to fight those battles. Coming here is destabling to me because I get attacked by anti-med people and end up getting sucked into fighting them. Meds have their drawbacks, but if you are in the state I was in, you really need them to get you to the point where you can take up the fight by natural means. A lot of times this means lifestyle changes that you have gotten very entrenched in. I used to think that I had little willpower and just fought harder to change things. Why were things so hard for me to change when I saw others do it with ease. I’ve found that the fight is what is hurting me. I stopped fighting and started working on losing the constant stress I was placing on myself. The end result is I now find it much easier to make those changes, and I don’t even have to try. They come automatically. I have not made it all the way. It’s so easy to go back to the habits that I have learned over a lifetime. I’m sorry if I rambled some. I am not feeling well today. I have been destabilized a bit the last few days and I am working to put things back into perspective.  I fought against my mental condition by getting angry, and this only feed my instability. I’ve let myself fall back into that trap lately. To get anything out of this group, you are going to have to ignore the people that you decide are troublemakers. I have made the mistake of not doing that again. Looks like I would learn. R, you can get better, and meds are but one tool to use. Many times it must be the first tool. After you have learned to change your thinking processes and maintain them, you can try to taper off of some meds but I am convinced that you must do the total package. That’s my goal anyway. Good luck HoP PS Thanks Douglas

Response:

HOpper is a sexist rageaholic and a wife beating dog killer who is addicted to pain pills. – Hide quoted text — Show quoted text – Let me second and third some of these points as well (as it sounds like Hop and I have similar variants – I also cycle more or less daily – though it is stress not anger that sets me off). I too also had to add an anti-depressant (Wellbutrin) and, perhaps like Hop as well? have physical problems that sometimes prevent me from working out (i pinched a nerve in my neck from staring manically at the computer for too long! — that you too Hop?) Changing your diet and exercise really helped me. I eat a lot of fish now and cut out the junk food. Strangely that, and drinking lots of water, made me eat much less, even though I was more active. The general point is that a ‘cure’ only comes from creating a functional life (more or less) and involves changes from a lot of different directions. I definitely agree about the order of drugs and the time frame for waiting them out. Usually when we get to the drug intervention stage our bodies/minds have been wildly cyclying and we are generally unhealthy. No matter what it would have taken time to stabalize … so hard as it is, wait it out. Good luck – we’re here if you need us. -Doug <I was just prescribed 500mg of Depakote ER each night for Bipolar-mostly <manic symptoms.I’ve been on it 3 days, my doc said the racing thoughts and <hyperness would stop with it. How long does it usually take to work? < I started with 250 mg twice a day for a week and then went to 500 mg. The day after going to the higher dose, I woke up and could not speak properly and was real dizzy. I went back down on the dose a little and ramped up more slowly and had no more problems with it. I am an ultra rapid cycler, (mood swings in less than a day sometimes). I know cycle slightly over about a month. Keeping a mood chart is a good idea. I’ve been meaning to make a spread sheet or data base and give it out here for people to use. Maybe I can get the time. It’s good to keep other records too, like stress incidents. Anything that happens to make me angry starts me cycling again. Depakote is known to cause weight gain, but if you change your eating habits, you can control this. I have gained about 10 lbs since going on it, but I have some other physical problems that have keep me from being as active as I have been, so I might have gained this anyway. IMO Depakote should be the first mood stabilizer to try. It has been used for some time and the side effect, both long and short term are well known, so I put it as the safest to try. Lithium is the next in line as it has been around the longest, but it is dangerous in that it is difficult to maintain the proper level. If you exert yourself and sweat a lot the levels will change and salt intake affects the levels too. Lithium is also not very effective for rapid cyclers. Give Depakote at least two months before you make any judgement. I stabilized after just a week on it and had no side effects other than what I stated above, but each person is different. I leveled out in a depressed state and found that I needed  an antidepressant. Now with the combination of the two I am pretty stable. Good luck Hop

Response:

Let me second and third some of these points as well (as it sounds like Hop and I have similar variants – I also cycle more or less daily – though it is stress not anger that sets me off). I too also had to add an anti-depressant (Wellbutrin) and, perhaps like Hop as well? have physical problems that sometimes prevent me from working out (i pinched a nerve in my neck from staring manically at the computer for too long! — that you too Hop?) Changing your diet and exercise really helped me. I eat a lot of fish now and cut out the junk food. Strangely that, and drinking lots of water, made me eat much less, even though I was more active. The general point is that a ‘cure’ only comes from creating a functional life (more or less) and involves changes from a lot of different directions. I definitely agree about the order of drugs and the time frame for waiting them out. Usually when we get to the drug intervention stage our bodies/minds have been wildly cyclying and we are generally unhealthy. No matter what it would have taken time to stabalize … so hard as it is, wait it out. Good luck – we’re here if you need us. -Doug – Hide quoted text — Show quoted text – <I was just prescribed 500mg of Depakote ER each night for Bipolar-mostly <manic symptoms.I’ve been on it 3 days, my doc said the racing thoughts and <hyperness would stop with it. How long does it usually take to work? < I started with 250 mg twice a day for a week and then went to 500 mg. The day after going to the higher dose, I woke up and could not speak properly and was real dizzy. I went back down on the dose a little and ramped up more slowly and had no more problems with it. I am an ultra rapid cycler, (mood swings in less than a day sometimes). I know cycle slightly over about a month. Keeping a mood chart is a good idea. I’ve been meaning to make a spread sheet or data base and give it out here for people to use. Maybe I can get the time. It’s good to keep other records too, like stress incidents. Anything that happens to make me angry starts me cycling again. Depakote is known to cause weight gain, but if you change your eating habits, you can control this. I have gained about 10 lbs since going on it, but I have some other physical problems that have keep me from being as active as I have been, so I might have gained this anyway. IMO Depakote should be the first mood stabilizer to try. It has been used for some time and the side effect, both long and short term are well known, so I put it as the safest to try. Lithium is the next in line as it has been around the longest, but it is dangerous in that it is difficult to maintain the proper level. If you exert yourself and sweat a lot the levels will change and salt intake affects the levels too. Lithium is also not very effective for rapid cyclers. Give Depakote at least two months before you make any judgement. I stabilized after just a week on it and had no side effects other than what I stated above, but each person is different. I leveled out in a depressed state and found that I needed  an antidepressant. Now with the combination of the two I am pretty stable. Good luck Hop

Response:

I was just prescribed 500mg of Depakote ER each night for Bipolar-mostly manic symptoms.I’ve been on it 3 days, my doc said the racing thoughts and hyperness would stop with it. How long does it usually take to work?

Response:

I was just prescribed 500mg of Depakote ER each night for Bipolar-mostly manic symptoms.I’ve been on it 3 days, my doc said the racing thoughts and hyperness would stop with it. How long does it usually take to work?

Hey been there, doing that. Forget about three days – the brain fights letting chemicals in easily. it takes a lot longer to feel the effects (and in my case, it took longer to feel even the nasty side effects – vertigo being the worst for me). And remember too what it will do – IF it works – is slowly bring down the cyclying. If you look closer (as i did with the help of a daily mood log), you’ll probably see that in fact you cycle up and down (not to depression but for us ‘downtime’ or slightly morbid or angry thinking — sounds, by the way, like we have similar variants of this thing). so what it’ll do is slowly bring the ups down a bit and give you the CHOICE to control them. More than the med is necessary in my view. Awareness of your own patterns, discipline, etc. But … long story short? … see what you are feeling in about a month. Good luck, doug

Response:

Question:

This individual, Tom Hennessy, aka ironjustice, watchman, and several other past identities, is what might be called a ’single issue’ fanatic. He is without doubt sincere, and equally without doubt, zealous to the point that in his mind, virtually every condition known to man and medical science must be attributed to ‘iron overload’. He has come to this belief because it has been revealed to him in the bible after years of deciphering the hidden ‘code’ he found therein. In overly simplistic analysis it boils down to his belief that all of mankind has sinned by ‘becoming’ meat eaters instead of ‘remaining’ vegan as the bible tells him they should. He totally rejects the concept of man as an omnivore. His ‘talent or expertise’, is in spending the time to cruise the medical information sites in hopes of spotting any possible study or report that might bolster his mission. Each study, or report, he posts IS real, but the information in them is all too often misunderstood. Unfortunately for Tom, after posting these reports, they are then examined, they often have nothing whatsoever to do with the actual medical condition of the newsgroup he posts them on. Tom has never been able or willing to simply discuss the information he posts. Rejecting his thesis is, to him, cause to reply in an very personal and abusive manner. When challenged, Tom often becomes verbally abusive including scatological and obscene language. He has also resorted to attempts at character assassination by taking old posts and changing the intent/meaning of them so as to make that person look bad in the eyes of others. He is currently posting from aol because his prior isp/server decided he was in violation of their TOS/AUP for all of his postings over time. Before you follow the advice of someone like this, you might wish to do a Google search of the many newsgroups he posts in, see for yourself how accurate he is, and how he actually deals with folks. The PRIMARY fact that Tom wishes to impart is: (quoting)    Medical treatment for arthritis is quite useless. S Who loves ya. Tom http://www.angelfire.com/rebellion/watchman Jesus was a vegetarian! http://www.nucleus.com/watchman Moses was a mystic! http://www.nucleus.com/watchman/light.html

ABOVE SITES DISCONNECTED BY ISP FOR aup/tos ABUSE

Response:

Once again Tom, you prove my point with your venom – ineffectual as it might be, it demonstrates that you will lie rather than have an actual discussion. I posted a specific response to this lie of yours several weeks ago – a post that you ignored. All you are doing is exposing your own base nature by continuing this falsehood. the only thing available to you is to go back to that post of mine and address it point for point. To not do so, is only going to be a disservice to YOU – by avoiding, it you give the appearance of a troll. Is that your intent? And by the way Tom – by adding Oxycontin to your false claims against me – you HAVE committed additional slander. You already know full well that it does not wound me to have you continue this. In my view, it is only showing others who and what you are. Each step of this path you have chosen will only lead you further away from your goal of having your posts on iron read and considered. You profess to be christian, and believe in a hereafter – By that standard these continuing falsehoods will only tar your soul. And only you will answer for it. With the sadness appropriate to this topic Paul – Hide quoted text — Show quoted text – Keep your children away from .. Paul ..! He seems to be an accomplished drug user. Oxycontin must be a BONUS to ole .. Paul .. What do you use the purple haze for NOW .. Paul .. ? a chaser ..? Search Result 3 Newsgroups: alt.support.arthritis View: Complete Thread (21 articles) | Original Format Well, shucks If I have to fess up – 2 days backstage at Woodstock, worked lights at Powder Ridge, Staging at the Horse Farm and Altamount, rigging crew for the rebuild of Fillmore East, designer with Joe’s Light Show for the Dead, the Birds, and the Eagles – House tech for the Village Vanguard and The Beacon…Now, don’t ask me to actually remember what happened on any given night ‘66-’70- purple haze wasn’t just a song… Who loves ya. Tom http://www.angelfire.com/rebellion/watchman Jesus was a vegetarian! http://www.nucleus.com/watchman Moses was a mystic! http://www.nucleus.com/watchman/light.html

Response:

If there are any newbies out there who haven’t noticed yet, Paul’s factual postings are indeed true and trustworthy.  This nut Tom Hennessy is a fanatic and obviously posts malicious tales without foundation. Although he will often post abstracts from reputable sources, he doesn’t understand their information and uses them only to promote his own warped theories of iron utilitation in the human body.  Anyone who points out the falacies in his theories becomes a target, as obviously Paul has. Usenet is a funny place where a single individual can become a frequent source of misunderstandings and confusion.

Response:

Keep your children away from .. Paul ..! He seems to be an accomplished drug user. Oxycontin must be a BONUS to ole .. Paul .. What do you use the purple haze for NOW .. Paul .. ? a chaser ..? Search Result 3 Newsgroups: alt.support.arthritis View: Complete Thread (21 articles) | Original Format Well, shucks If I have to fess up – 2 days backstage at Woodstock, worked lights at Powder Ridge, Staging at the Horse Farm and Altamount, rigging crew for the rebuild of Fillmore East, designer with Joe’s Light Show for the Dead, the Birds, and the Eagles – House tech for the Village Vanguard and The Beacon…Now, don’t ask me to actually remember what happened on any given night ‘66-’70- purple haze wasn’t just a song… Who loves ya. Tom http://www.angelfire.com/rebellion/watchman Jesus was a vegetarian! http://www.nucleus.com/watchman Moses was a mystic! http://www.nucleus.com/watchman/light.html

Response:

Simple physics .. nature ’strives for a neutral’ .. and when the body is acidic .. the bone will ‘melt’ .. expel calcium to ‘balance’ the acid in the body .. more alkaline .. causing a lack / need for calcium. : Proc Nutr Soc 2002 May;61(2):151-64 Related Articles, Books, LinkOut   The role of the skeleton in acid-base homeostasis. New SA, New SA. Centre for Nutrition and Food Safety, School of Biomedical & Life Sciences, University of Surrey, Guildford, Surrey GU2 7XH, UK. Nutritional strategies for optimising bone health throughout the life cycle are extremely important, since a dietary approach is more popular amongst osteoporosis sufferers than drug intervention, and long-term drug treatment compliance is relatively poor. As an exogenous factor, nutrition is amenable to change and has relevant public health implications. With the growing increase in life expectancy, hip fractures are predicted to rise dramatically in the next decade, and hence there is an urgent need for the implementation of public health strategies to target prevention of poor skeletal health on a population-wide basis. The role that the skeleton plays in acid-base homeostasis has been gaining increasing prominence in the literature; with theoretical considerations of the role alkaline bone mineral may play in the defence against acidosis dating as far back as the late 19th century. Natural, pathological and experimental states of acid loading and/or acidosis have been associated with hypercalciuria and negative Ca balance and, more recently, the detrimental effects of ‘acid’ from the diet on bone mineral have been demonstrated. At the cellular level, a reduction in extracellular pH has been shown to have a direct enhancement on osteoclastic activity, with the result of increased resorption pit formation in bone. A number of observational, experimental, clinical and intervention studies over the last decade have suggested a positive link between fruit and vegetable consumption and the skeleton. Further research is required, particularly with regard to the influence of dietary manipulation using alkali-forming foods on fracture prevention. Should the findings prove conclusive, a ‘fruit and vegetable’ approach to bone health maintenance may provide a very sensible (and natural) alternative therapy for osteoporosis treatment, which is likely to have numerous additional health-related benefits. PMID: 12133196 [PubMed - in process] —— Who loves ya. Tom http://www.angelfire.com/rebellion/watchman Jesus was a vegetarian! http://www.nucleus.com/watchman Moses was a mystic! http://www.nucleus.com/watchman/light.html

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Question:

   Have you got some candidates designed yet, or do you think that they would be easy to design?  Something like an oral drug or a better injectable?

I looked at it 4 years ago but we knew there was a lot of people moving into the area and it would be difficult to compete in the area with the speed the larger companies moved into it. We are targetting G-coupled receptors for other diseases and defects and so have a cursory interest in it for HIV. The target is not difficult.   I have not studied real data, but the indications were for twice daily injections.  If you could design something that would even remain active for twice as long it would cut down the dosing regimen.  Even if it was ‘only’ as effective it would be the drug of choice.

Trimeris are thinking the same way as me and already working on it.    What is happening with REV inhibition?  You only mentioned it in passing, and it sound useful.  If you can prevent all the late protein DNAs from being transcribed, it would not make much difference if the full strand RNAs are ever made!  It would give the CD8s some time to detect the cells infection and eliminate the activated/infected cell.

Yeah still plugging along. I have some capped peptides that are more potent than rev to interact with the rre, but like the Trimeris compounds aren’t bioavailable, so we’re working that way. For the receptors it’s a turn mimetic, for rev it’s a helix mimetic and so the design and chemistry is the same. Len…

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 Len  writes:    Have you got some candidates designed yet, or do you think that they would be easy to design?  Something like an oral drug or a better injectable? I looked at it 4 years ago but we knew there was a lot of people moving into the area and it would be difficult to compete in the area with the speed the larger companies moved into it. We are targetting G-coupled receptors for other diseases and defects and so have a cursory interest in it for HIV. The target is not difficult.

  Since the target is not difficult, is there some other reason, aside from not moving as fast as a larger group, for not pursing the co-receptors as drug targets?   I have not studied real data, but the indications were for twice daily injections.  If you could design something that would even remain active for twice as long it would cut down the dosing regimen.  Even if it was ‘only’ as effective it would be the drug of choice. Trimeris are thinking the same way as me and already working on it.

  They were initially a very small group.  Because they produced interesting results they have attracted capitol to the project that has allowed them to expand to the point where they are just about ready to market their first drug.   T20 and it’s near relatives look to be a good drugs.  If not the complete answer, at least part of the answer.    What is happening with REV inhibition?  You only mentioned it in passing, and it sound useful.  If you can prevent all the late protein DNAs from being transcribed, it would not make much difference if the full strand RNAs are ever made!  It would give the CD8s some time to detect the cells infection and eliminate the activated/infected cell. Yeah still plugging along. I have some capped peptides that are more potent than rev to interact with the rre, but like the Trimeris compounds aren’t bioavailable, so we’re working that way. For the receptors it’s a turn mimetic, for rev it’s a helix mimetic and so the design and chemistry is the same.

   Is the goal for this compound competing with rev for the substrate and locking it out of the complex that forms around it and thus preventing the elongation?      I find the idea of locking HIV into juvenile conformation attractive.  The longer that HIV can be kept active, but not producing new viral particles, the more time the CD8s have to do their job of eliminating infected cells.  This could easily be the drug that turns the corner on infection itself, and could lead to actual reductions in the absolute number of infected cells.  With the other modalities of HAART the goal of elimination could become a real target again. What is the question?       Gertrude Stein’s last words No one mouth is big enough to utter the whole thing.    Alan Watts On Display in the UK     http://www.web-gallery.co.uk

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- Hide quoted text — Show quoted text – I’ve have herpes and none of the medication I have ever taken read AZT, Zidovudine. It all says acyclovir. Even the tpoical stuff. Your telling me this is AZT? No that was a big typo..acyclovir is often abbreviated to ACV and I think his fingers just followed the common for this group TLA of AZT…. Yes and no. Zovirax is made by Glaxo-Welcome and used to contain 5% AZT, it now contains Acyclovir because HSV is G rich – in some countries it is the same as the old AZT formulation and in some countries Acyclovir is not yet approved. Australia is now using Acyclovir, but last time I checked it was AZT (sorry). The point is the same. Acyclovir and it’s bioavailable prodrugs form a 9-(2-hydroxyethoxymethyl)guanine that then undergoes cellular phosphorylation and terminates DNA synthesis. It certainly does the same thing as AZT and has almost identical toxicities. Len…

You say ACV contained 5% AZT????? You have a source? I thought it mainly inhibited thymidine kinase, which is herpes specific. ACVs toxicity is negligible and shows none of the toxicities of AZT. Oh and for Tim’s benefit, when I said to watch the imiquimod space, I meant look out for the next generation spin offs like resiquimod as he says.

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– Hide quoted text — Show quoted text –   They are not quite that bad.  They do require injection, but the pumps were retired early in the trials as their constant flow rates were found to not be necessary.  It does require refrigeration and that does limit availability to those with refrigeration. And syringes. It’s definitely a 1st world treatment. A gamma turn mimetic can hit these receptors in a far greater manner – possibly even be orally bioavailable. Peptides just don’t work as drugs. They’re also very expensive to manufacture cleanly. What they have produced as a therapeutic anybody else would label a pharmacophore.

  Are you saying that you could get the same effect with a non peptide based drug?   From what I have heard about the trials, the T-drugs should be able to replace one of the components in a no longer functional ‘cocktail’.  The therapeutic gains in loosing the PIs may offset the difficulty of administration. Dunno. We’ll have to see when they are more routine. I never trust a company trial. I agree it has potential to replace a redundant PI, but having worked with peptides I don’t trust them…

   They are showing large reductions in viral load in the trials.  Are you indicating that the peptides themselves are unstable? What is the question?       Gertrude Stein’s last words No one mouth is big enough to utter the whole thing.    Alan Watts On Display in the UK     http://www.web-gallery.co.uk

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I’ve have herpes and none of the medication I have ever taken read AZT, Zidovudine. It all says acyclovir. Even the tpoical stuff. Your telling me this is AZT? No that was a big typo..acyclovir is often abbreviated to ACV and I think his fingers just followed the common for this group TLA of AZT….

Yes and no. Zovirax is made by Glaxo-Welcome and used to contain 5% AZT, it now contains Acyclovir because HSV is G rich – in some countries it is the same as the old AZT formulation and in some countries Acyclovir is not yet approved. Australia is now using Acyclovir, but last time I checked it was AZT (sorry). The point is the same. Acyclovir and it’s bioavailable prodrugs form a 9-(2-hydroxyethoxymethyl)guanine that then undergoes cellular phosphorylation and terminates DNA synthesis. It certainly does the same thing as AZT and has almost identical toxicities. Len…

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  Are you saying that you could get the same effect with a non peptide based drug?

Better. Dunno. We’ll have to see when they are more routine. I never trust a company trial. I agree it has potential to replace a redundant PI, but having worked with peptides I don’t trust them…    They are showing large reductions in viral load in the trials.  Are you indicating that the peptides themselves are unstable?

Yes. They are destroyed by cellular proteases and excreted rapidly. Taken orally you’d get no results. This is why they are not bioavailable. In the same manner we could inject HIV-1 protease substrate sequences and inhibit replication. Len…

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  Are you saying that you could get the same effect with a non peptide based drug? Better.

   Have you got some candidates designed yet, or do you think that they would be easy to design?  Something like an oral drug or a better injectable? Dunno. We’ll have to see when they are more routine. I never trust a company trial. I agree it has potential to replace a redundant PI, but having worked with peptides I don’t trust them…    They are showing large reductions in viral load in the trials.  Are you indicating that the peptides themselves are unstable? Yes. They are destroyed by cellular proteases and excreted rapidly. Taken orally you’d get no results. This is why they are not bioavailable. In the same manner we could inject HIV-1 protease substrate sequences and inhibit replication.

  I have not studied real data, but the indications were for twice daily injections.  If you could design something that would even remain active for twice as long it would cut down the dosing regimen.  Even if it was ‘only’ as effective it would be the drug of choice.    What is happening with REV inhibition?  You only mentioned it in passing, and it sound useful.  If you can prevent all the late protein DNAs from being transcribed, it would not make much difference if the full strand RNAs are ever made!  It would give the CD8s some time to detect the cells infection and eliminate the activated/infected cell. What is the question?       Gertrude Stein’s last words No one mouth is big enough to utter the whole thing.    Alan Watts On Display in the UK     http://www.web-gallery.co.uk

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The denialist’s worst nightmare: anti-virals for the common cold! Bwah-ha-ha! Pleconaril got turned down by the FDA…..April time. Risk benefit equation didnt work.

Is that the same thing as needing more studies?  I don’t think so. http://www.fdaadvisorycommittee.com/FDC/AdvisoryCommittee/Committees/… Aventis/Viropharma Picovir Needs Studies In Generalizable Population For Approval Viropharma’s Picovir approval would require studies in a broader patient population than the one studied by the sponsor in its pivotal trials for the common cold therapy, FDA’s Antiviral Drugs Advisory Committee agreed at its March 19 meeting. The committee expressed interest in additional data with Picovir (pleconaril) from a wider array of ethnicities, ages, concomitant diseases (such as asthma) and patients receiving other medications. The patients in the pivotal trials were about 70% female and 80% white with a mean age of 36 years, and many patients with concomitant diseases were excluded. Viropharma has a trial underway for treatment of pediatric patients and a prevention study for viral respiratory infections. Data from those trials are expected in the second quarter of this year. Aventis is co-developing the drug with Viropharma. The concern about the generalizability of the Picovir data and certain safety issues led the committee to vote unanimously against approval of the drug for treatment of acute picornaviral viral respiratory infection in adults. One major concern of the committee was how pleconaril would be used in the "real world." Picovir efficacy appeared to be superior to placebo only if the drug were given in the first 24 hours of a cold. Many committee members remarked that the likelihood a patient would seek treatment within that time period was not great and that only pre-prescription of pleconaril for use on demand would ensure efficacious use. Further elucidation of Viropharma’s strategy to get patients to receive the drug in the appropriate timeframe was asked for by the committee. Pre-prescription of Picovir concerned the committee because of outstanding questions regarding the safety of the drug. The committee said that FDA should request more data on drug-drug interactions, cardiovascular toxicity, food effect, viral resistance, repeated exposure and the effect of pleconaril on oral contraceptives and estrogen levels in women. In the studies, 3.1% of women taking OCs and pleconaril experienced menstrual disorders compared to 0% of placebo patients on OCs. The rate of disorders in women who received pleconaril and were not on OCs was .1%. Two patients taking OCs and pleconaril also became pregnant, raising the possibility that the drug somehow interferes with the contraceptive action of oral contraceptives. Viropharma has a study looking at the effect of pleconaril on women’s menstrual cycles. Committee consultant Barth Reller, MD, Duke University Medical Center, who is also chairman of FDA’s Anti-Infective Drugs Advisory Committee, suggested that the bar for approval for pleconaril should be high due to potential for widespread use, pre-prescription and safety issues. Reller said he would like to see a level of safety similar to that used for an over-the-counter drug. "It is a very substantial bar" because the benefit in reduction of symptoms "is very small," Reller said. Picovir reduced the time to resolution of rhinorrhea and alleviation of other symptoms of VRI by a median .5 to 1 days compared to placebo in the intent-to-treat population, FDA’s analysis concluded. The difference between pleconaril and placebo increased to up to 1.5 days for patients actually infected with picornavirus. The reduction in symptomatic days from pleconaril treatment for non-smokers was greater than that for smokers, up to 2 days less than placebo compared to 1 day. The median treatment effect was a .4 day reduction in symptoms for men compared to a 1 day reduction in women. Non-whites had no statistically significant reduction in days of symptoms with pleconaril treatment. Posted: Tuesday, March 19, 2002 http://biz.yahoo.com/prnews/020319/nytu187_1.html Tuesday March 19, 8:22 pm Eastern Time Press Release SOURCE: ViroPharma Incorporated and Aventis Pharmaceuticals PICOVIR(TM) (pleconaril) Reviewed by FDA Advisory Committee Committee Votes to Not Recommend Approval; Requests Additional Data GAITHERSBURG, Md., March 19 /PRNewswire-FirstCall/ — ViroPharma Incorporated (Nasdaq: VPHM – news) and Aventis Pharmaceuticals (NYSE: AVE – news), the U.S. pharmaceutical business of Aventis Pharma AG, announced today that the Antiviral Drugs Advisory Committee of the U.S. Food and Drug Administration (FDA) voted to not recommend PICOVIR(TM) (pleconaril) for approval at this time for the treatment of the common cold in adults. The Advisory Committee’s recommendation is not binding, although it will be considered by the FDA in its review of the new drug application (NDA) for PICOVIR. “While we are disappointed with the vote, we are encouraged that the Committee acknowledged the efficacy of PICOVIR,” said Mark McKinlay, vice president of research and development for ViroPharma. “The Committee requested that additional data not included in the pivotal trials be provided before the drug could be recommended for approval. We will continue to work with the FDA to determine appropriate next steps toward approval for PICOVIR.” PICOVIR is a first-of-a-kind oral antiviral product that specifically inhibits the integrity of the picornavirus capsid, a protective shell of the virus that is essential for virus infectivity and transmission. In Phase III clinical trials in adults, patients who took pleconaril experienced an early and sustained reduction in symptom severity and a reduction in their disease duration. PICOVIR has been studied in nearly 3,900 patients in 5-7 day clinical trials. Overall treatment was well tolerated and reported adverse events were comparable to placebo in these trials. The most frequent adverse events in both the placebo and pleconaril groups in these studies were headache, diarrhea and nausea. ViroPharma and Aventis formed a collaboration to co-develop and co-promote PICOVIR in the United States. The companies expect to announce in the second quarter of 2002 the results of additional Phase II studies with PICOVIR for the treatment of the cold in the pediatric population and for prophylactic use. About ViroPharma Incorporated ViroPharma Incorporated is committed to the commercialization, development and discovery of antiviral pharmaceuticals. The company is focused on drug development and discovery activities in viral diseases including viral respiratory infection (VRI), hepatitis C and RSV disease. ViroPharma’s most advanced product candidate, PICOVIR (pleconaril), is in clinical development for treatment of picornavirus diseases and is under regulatory review at the FDA. ViroPharma also has product candidates in preclinical and clinical development for the treatment of hepatitis C and RSV disease, respectively. About Aventis Pharmaceuticals Aventis Pharmaceuticals conducts the U.S. business of Aventis Pharma AG. With headquarters in Bridgewater, N.J., Aventis Pharmaceuticals focuses its activities on important therapeutic areas such as cardiology, oncology, anti- infectives, arthritis, allergy and respiratory, diabetes, and the central nervous system. Aventis Pharma AG is the pharmaceutical company of Aventis S.A. (NYSE: AVE – news). Aventis Pharma is dedicated to treating and preventing human disease through the discovery, development, manufacture and sale of innovative pharmaceutical products aimed at satisfying unmet medical needs. Aventis Pharma has its corporate headquarters in Frankfurt, Germany. Aventis Pharma encompasses Aventis Pasteur, a world leader in vaccines based in Lyon, France, and Aventis Behring, a world leader in therapeutic proteins headquartered in King of Prussia, Pennsylvania, USA. Aventis is dedicated to improving life through the discovery and development of innovative pharmaceutical products. In 2001, Aventis generated sales of $17.7 billion, invested approx. $3 billion in research and development and employed approx. 75,000 people in its core business. For more information, please visit: http://www.aventis.com. To receive a copy of this release or any recent release, visit the Aventis Pharmaceuticals U.S. Web site at http://www.aventispharma-us.com or call 800/207-8049 or ViroPharma website: http://www.viropharma.com. Statements in this press release relating to ViroPharma’s efforts to obtain regulatory approval to market Picovir(TM), and to ViroPharma’s and Aventis’ plans to commercialize Picovir(TM) and to work with regulatory authorities to determine appropriate steps toward the approval of Picovir(TM) are forward-looking and subject to risks and uncertainties. Neither the FDA nor any other regulatory authority has approved Picovir(TM) for commercialization. There can be no assurance that FDA or other regulatory authority approval for Picovir(TM) will be granted on a timely basis or at all. Even if approved, there can be no assurance that Picovir(TM) will achieve market acceptance. Investors should note that the conduct of currently planned or additionally required clinical trials and acquiring regulatory approval for investigational pharmaceutical products are subject to risks and uncertainties. There can be no assurance that planned clinical trials can be initiated, or that planned or ongoing clinical trials can be successfully concluded or concluded in accordance with ViroPharma’s and Aventis’ anticipated schedule. These factors, and other factors, including, but not limited to those described in ViroPharma’s and … read more »

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I’ve have herpes and none of the medication I have ever taken read AZT, Zidovudine. It all says acyclovir. Even the tpoical stuff. Your telling me this is AZT?

No that was a big typo..acyclovir is often abbreviated to ACV and I think his fingers just followed the common for this group TLA of AZT…. TIm When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568

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If you want to attack me (ie, idiot, sparty/bard??) personally than do it via e-mail, the address is plain to see.

Public post is public discussion.  First rule of Usenet. Unfortunately, it’s first rule of "netiquette" that private email is just that–private, and it’s exceedingly bad form to post it publically.  So if you did write to me, "how’d you find me out again?" I wouldn’t be able to quote you. In public, one needs to stand by one’s words. No, posting publically my suspicion so someone else can either prove or disprove it. B/

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Thank you, to those of you who answered my post(with actual information). I am truly confused about this stuff and I want to know what is going on before I do anything. Yes, I read the dissident lit. – so what? I read the mainstream stuff to. Questioning this stuff is important to me. There are so many opinions. I posted this stuff because it has been bouncing around my head and I think my questions are valid whether or not you find them stupid. If you don’t think they are worth your concern then don’t answer. I know I need to learn more about my topic, why do you think I posted? If you want to attack me (ie, idiot, sparty/bard??) personally than do it via e-mail, the address is plain to see. Don’t waste my time when I’m looking for answers. Not everyone is a disguised dissident trying to lure you in to their evil deception. Here is some punctuation, use as needed ???????,.;:::;;;!!!!! I’ve have herpes and none of the medication I have ever taken read AZT, Zidovudine. It all says acyclovir. Even the tpoical stuff. Your telling me this is AZT?

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The denialist’s worst nightmare: anti-virals for the common cold! Bwah-ha-ha!

Pleconaril got turned down by the FDA…..April time. Risk benefit equation didnt work. One of the difficulties is that it targets rhinoviruses (and certain close families) specifically rather than being a URT treatment as a whole (ie rhinoviruses rather than all vaguely flu/cold-ish infection). Add to that you are talking about a drug for treating a short course, self limiting disease with symptom alleviating OTC meds present already and you are lookng at a drug that will be a nightmare to get on the market no matter how effective you can show it to be (thats the basis for the turn down so far as I know)..it works but overall profile just aint benign enough to be worth treating colds. Oh and it doesnt apparently work on foot and mouth according to the guy who presented on it in 2001. Tim When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568

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Watch the imiquimod space.

Id lean more to the resiquimod space for herpes stuff myself…. Tim When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568

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You need to know more about your topic. Herpes has a reservoir in nerve ganglions where drugs can’t go. The current *successful* treatment for Herpes when it launches from the ganglion is topical AZT. That’s right AZT works perfectly at removing Herpes once they flair. Ralenza is the influenza drug and most of your list have compounds being tested against them. So yes the theory is sound. For Herpes they really need a vaccine.

Watch the imiquimod space. I believe that the rights to the next generation of these immune response modifiers has been bought from

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Woo Hoo!  Congrats, Laureen! — Cheers! Nicole K. 263/182.5/150 Low carb since May 1, 2000

– Hide quoted text — Show quoted text – OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb

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LLLLLLLLLLLauuurrrrrreeeeeeeeeeennnnnnnnn it was in no way intended to offend, it was a total aunt flo related responses. Girl your the last one i would attempt to offend. Sorry Surely you understand most of these threads women a bitchen about starting then to find this one….. Gawd  you do need to start, so you wont take your pms out on me. gawd let me lurk — JoKnows http://home.kscable.com/a1av8ter/joknows.htm

– Hide quoted text — Show quoted text – geesh i would never have believed someone could get so excited about starting — JoKnows http://home.kscable.com/a1av8ter/joknows.htm OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb Gee Jo, Thanks for your kind words of support. NOT!  How would you have felt if I had posted in one of your threads the same thing like "Geesh! I cant believe she gets so shook up about….."? Betcha would have taken it as a slam huh? I detected your sarcasm and could almost see your eyes rolling in your post. You obviously dont have PCOS. When a person hasnt had but maybe two periods on their own with no drug intervention in like 25 years, one does get a bit excited. Having no periods puts me at a very high risk for cancer of the uterus. Taking the artificial drugs puts me at risk for blood clots, stroke, and other problems because of my weight. Having one on my own alleviates the negative drawbacks to no period and drug ingestion. I have spent my *WHOLE* life feeling very freakish and abnormal. To experience something normal is exciting to me, sorry if my post took up your time. You might go back and read it to see why you came across the way you did. This is the first time I have actually been a bit offended in here and sorta feel like tucking my tail between my legs and "going home" Laureen

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I am delving in here to give you an outside perspective … as this appears to be a very sensitive issue for you…..I don’t feel Jo came off as derogatory toward you at all, but more of a ‘gawd I hate TOM’ attitude in general.  I am glad that this feels like an accomplishment for you, and in your case, it should be looked upon as such. Congrats! – Hide quoted text — Show quoted text – geesh i would never have believed someone could get so excited about starting — JoKnows http://home.kscable.com/a1av8ter/joknows.htm OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb Gee Jo, Thanks for your kind words of support. NOT!  How would you have felt if I had posted in one of your threads the same thing like "Geesh! I cant believe she gets so shook up about….."? Betcha would have taken it as a slam huh? I detected your sarcasm and could almost see your eyes rolling in your post. You obviously dont have PCOS. When a person hasnt had but maybe two periods on their own with no drug intervention in like 25 years, one does get a bit excited. Having no periods puts me at a very high risk for cancer of the uterus. Taking the artificial drugs puts me at risk for blood clots, stroke, and other problems because of my weight. Having one on my own alleviates the negative drawbacks to no period and drug ingestion. I have spent my *WHOLE* life feeling very freakish and abnormal. To experience something normal is exciting to me, sorry if my post took up your time. You might go back and read it to see why you came across the way you did. This is the first time I have actually been a bit offended in here and sorta feel like tucking my tail between my legs and "going home" Laureen

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Woohoo! That’s awesome!!! Don’t worry about TMI, remember, I’m the one that posted the stupid question asking if I had PMS last week. Maybe you’ll be down lots at your next weigh-in! — Cassie 300+/279/150

OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb

Response:

Well, congrats, Laureen: maybe you can have my stockpile of pads <grin. I went Costco-crazy and stockpiled on ‘em. Come May I won’t need ‘em anymore! Vancouver_Gal – Hide quoted text — Show quoted text – Woohoo! That’s awesome!!! Don’t worry about TMI, remember, I’m the one that posted the stupid question asking if I had PMS last week. Maybe you’ll be down lots at your next weigh-in! — Cassie 300+/279/150 OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb

Response:

OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb

Response:

and was actually thinking about sex LC’ing is unbelievable!

Thanks for the confession…. now we know the secret. I’ve been searching for this… for years.    FG (male, of course) 1/14/2002     220/213/150

Response:

Hey Laureen, Have you considered that maybe the reason you weren’t down more at your weigh-in is ’cause you were retaining water pre-period and just didn’t realize it?  Maybe you’ll have a whoosh now!  I’m crossin’ my fingers for you!! How exciting! ~Jennifer – Hide quoted text — Show quoted text – OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb

Response:

geesh i would never have believed someone could get so excited about starting — JoKnows http://home.kscable.com/a1av8ter/joknows.htm

– Hide quoted text — Show quoted text – OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb

Response:

- Hide quoted text — Show quoted text – geesh i would never have believed someone could get so excited about starting — JoKnows http://home.kscable.com/a1av8ter/joknows.htm OMG! btw my  <G stands for GOSH! Im doing it again! I had a terric backache last night (still do) and was actually thinking about sex, and my armpits were tender by my breasts, things have smelled funny ( used to get it years ago too), I have been hungry too and fighting off cravings. Now it all makes sense! You girls have to understand something. I am the girl who doesnt bleed! Honest! I have lacked them for so long I dont even recognize one coming!!! My periods disappeared when I was 15. Im 39 now. The only way I had a period was by taking Provera. As the years went by the Provera stopped working. I kept taking it though so I wouldn’t get hyperplasia. I had a big period in Oct, nothing in Nov, a period in Dec  that started out with spotting then I boosted it with Provera but either way the Provera worked! Then one this month that started today!!! Im in shock! 3 out of 4 months! Thats more than I have had in like 8 years! LC’ing is unbelievable! I may be ovulating! Im so glad I had a tubal! I wonder if my body is going to level out a bit now! YEEE HAW BOY HOWDY ! Probably TMI for you though huh? =; } Laureen 414/378/200 LC’ing since 11/0101 http://community.webtv.net/larryandlaureen/LaureensLowCarb

Gee Jo, Thanks for your kind words of support. NOT!  How would you have felt if I had posted in one of your threads the same thing like "Geesh! I cant believe she gets so shook up about….."? Betcha would have taken it as a slam huh? I detected your sarcasm and could almost see your eyes rolling in your post. You obviously dont have PCOS. When a person hasnt had but maybe two periods on their own with no drug intervention in like 25 years, one does get a bit excited. Having no periods puts me at a very high risk for cancer of the uterus. Taking the artificial drugs puts me at risk for blood clots, stroke, and other problems because of my weight. Having one on my own alleviates the negative drawbacks to no period and drug ingestion. I have spent my *WHOLE* life feeling very freakish and abnormal. To experience something normal is exciting to me, sorry if my post took up your time. You might go back and read it to see why you came across the way you did. This is the first time I have actually been a bit offended in here and sorta feel like tucking my tail between my legs and "going home" Laureen

Response: