March 30, 2007
I am creating this blog to post the latest information about autoimmune disesease. I have spent the last seven years of my life searching for answers and treatments. I have found a lot of both, if you are mouse. In fact there are close to forty ways to manipulate a mouse's immune system or bone marrow (from which the imune system comes) to create real cures and treatments that are so good as to be the equivalent of a cure.
Sadly the FDA has rules in place that keep those cures from people and encourage Big Pharma to fund only the surest, easiest, and most likely to work treatmentsthat are merely copycats of already established treatments (see all the anti-TNFalpha drugs). The FDA delays true revolutionary treatents by decades during which our community members and their families suffer and many of us die.
We, as an autoimmune community, must come together to change FDA guidelines for clincal trials including the initiation of phase zero testing, compassionate use without penalty for the companies involved, new guidelines allowing biologicals to qualify for all autoimmune diseases at the end of any successful autoimmune phase three trial. Right now new treatments are approved for one autoimmne condition at a time. Each new set of clinical trials costs a billion dollars. Hence autoimmune sufferers who have the most members have the most approved drugs. You know who you are RA and MS folks. No FDA approval. No insurance coverage. You want to pay yourself? Few doctors will "off label" prescribe the new biologicals, such an act might threaten their medical "career investment." At least that is the fear. The other problem is most doctors are afraid of biologicals because they did not learn about them in medical school. "Damn, new-fangled medicines!"
Autoimmune dieases were artificially separated from each other sixty years ago based on what structures in the body were attacked. If the skin is attacked, call it psoiasis. If the skin gets blisters-pemiphagus. If neural sheaths were attacked--Multiple Sclerosis. If joints were attacked Rheumatoid Arthritis. The medical knowledge at the time did not allow the namers of the 80 or more autoimmune disease to understand they all autoimmune disease had the same underlying mechanism--a dysfunctional bone marrow. Besides each time a researcher named a new one, he got to publish in a journal. The pursuit of prestige is a driver of men.
A successful bone marrow transplant has been known to cure all autoimmune diseases and dyfunctions (including asthma and allergy) for over thirty years. Combination Leukemia and RA victims who were successfully transpanted have been cured of both since the 1970's. [Sadly the immediate death rate for bone marrow transplant is between 10 and 25 %. There continue to be even more deaths from infection and Graft versus Host disease as years progress beyond transplant. So the bone marrow transplant is not used often.] Nevertheless the fact that RA and other autoimmune disease are cured by a new bone marrow has proved to medical researchers that the cause of autommune is not in the skin, joints or nerves. It is in the bone marrow.
A cure for one autoimmune disease is a cure for all. Instead of MS walks in April, there should be autoimune walks and demonstrations. The entire autoimmune comunity should join in. RA, MS, Lupus, Crohn's, Ps and PsA organizations should all be in that march. Law makers should be innundated with demands to solve the autoimmne problem. The cures are there. Let's get them to those in pain now! not ten or twenty years from now.
The AIDS community organized and their pressure forced the goverment to find highly successful treatments in less than ten years. When the AIDS comunity organized, conventional wisdom condemned it as a fool's errand. At the time no one believed that any way would be found to stop AIDS for fifty years or more. Yet in less than ten years, AZT was discovered and given to patients. We are in a far better position today than the AIDS community was in the 1980's. The cures are here now. We only need to demand that ALL autoimune patients have access to them.
Our family of four has dealt with immune dysfunction for over thirty two years. At first the health problems were mostly mine. Starting in our first years of marriage, I had unexplained angioedema, urticaria, apnea,and synope. When my wife and I discovered that the symptoms could be alleviated by the elimination of a couple of foods, eggs and tomatoes, we were relieved.
Our doctors at that time assured us that the problems were all psychological in nature. Even the sudden loss of lung function was not dangerous. It was hysteric. Once I lost conscousness, my lungs would open and I would breath normally again. No one died of such things. (At that time, 1977, there were thousands of asthma deaths every year but apparently no one told the family doctors.) In fact all autommune disease of any kind in the 1970's was caused by stress. Just cut out the stress and worry in your life and you could be like every one else. All immune disease was the fault of the afflicted. Every doctor knew that and they graciously assured us all of that. Don't worry about passing it on to children. As long as they are not stressed and hysteric like you, they won't have it.
We decided to have children. We had two fine sons. The eldest is a sucessful lawyer. No sign of any autoimmune disese or immune dysfunion. The youngest has severe reactions to foods and medicines as I did. In addition he has very severe psoriatic arthritis. He cannot walk unaided, use his hands to lift a metal fork or manipulate a computer mouse. He cannot even talk as the tendons in his vocal cords are affected. He is in constant pain.
He was a brilliant student in high school and college. He had a wonderful belly laugh that I shall never hear again. He had a beautiful singing voice. He played the keyboard. He was dating lovely, sweet, wonderful girls. His college years were his golory. For a time he was the editor of his college newspaper. Then in his senior year he developed what we thought was a strained knee. It wasn't. It was the first attack of psoriatic arthritis. Less than a year after his diagnosis, he could no longer use his hands or talk or walk without canes. That diagnosis was in January of 2004. He was totally disabled and unable to care for himself by January 2005.
I want to see him cured before I die. I am extremely ill now, barely able to eat any food. When I try I have severe symptoms of nausea, intesinal bloating, spasms, diarrhea and unbelieveable unrelenting bowel pain. I have lost twenty five pounds in two months and there is no sign of improvement. My time is running out. I have tried all the rescue meds--prednisone, Sol-u-medrol, antihistaines, antibiotic treatment. All worked initially but I reacted to each in turn with life threatening adverse reactions. Today a Chinese herbalists who also had an MD told me that he could not help me because I could not take herbal teas without syncope. Even though he takes complicated cases, he saw no hope for me.
We need these cures now.
I am creating this blog to post the latest information about autoimmune disesease. I have spent the last seven years of my life searching for answers and treatments. I have found a lot of both, if you are mouse. In fact there are close to forty ways to manipulate a mouse's immune system or bone marrow (from which the imune system comes) to create real cures and treatments that are so good as to be the equivalent of a cure.
Sadly the FDA has rules in place that keep those cures from people and encourage Big Pharma to fund only the surest, easiest, and most likely to work treatmentsthat are merely copycats of already established treatments (see all the anti-TNFalpha drugs). The FDA delays true revolutionary treatents by decades during which our community members and their families suffer and many of us die.
We, as an autoimmune community, must come together to change FDA guidelines for clincal trials including the initiation of phase zero testing, compassionate use without penalty for the companies involved, new guidelines allowing biologicals to qualify for all autoimmune diseases at the end of any successful autoimmune phase three trial. Right now new treatments are approved for one autoimmne condition at a time. Each new set of clinical trials costs a billion dollars. Hence autoimmune sufferers who have the most members have the most approved drugs. You know who you are RA and MS folks. No FDA approval. No insurance coverage. You want to pay yourself? Few doctors will "off label" prescribe the new biologicals, such an act might threaten their medical "career investment." At least that is the fear. The other problem is most doctors are afraid of biologicals because they did not learn about them in medical school. "Damn, new-fangled medicines!"
Autoimmune dieases were artificially separated from each other sixty years ago based on what structures in the body were attacked. If the skin is attacked, call it psoiasis. If the skin gets blisters-pemiphagus. If neural sheaths were attacked--Multiple Sclerosis. If joints were attacked Rheumatoid Arthritis. The medical knowledge at the time did not allow the namers of the 80 or more autoimmune disease to understand they all autoimmune disease had the same underlying mechanism--a dysfunctional bone marrow. Besides each time a researcher named a new one, he got to publish in a journal. The pursuit of prestige is a driver of men.
A successful bone marrow transplant has been known to cure all autoimmune diseases and dyfunctions (including asthma and allergy) for over thirty years. Combination Leukemia and RA victims who were successfully transpanted have been cured of both since the 1970's. [Sadly the immediate death rate for bone marrow transplant is between 10 and 25 %. There continue to be even more deaths from infection and Graft versus Host disease as years progress beyond transplant. So the bone marrow transplant is not used often.] Nevertheless the fact that RA and other autoimmune disease are cured by a new bone marrow has proved to medical researchers that the cause of autommune is not in the skin, joints or nerves. It is in the bone marrow.
A cure for one autoimmune disease is a cure for all. Instead of MS walks in April, there should be autoimune walks and demonstrations. The entire autoimmune comunity should join in. RA, MS, Lupus, Crohn's, Ps and PsA organizations should all be in that march. Law makers should be innundated with demands to solve the autoimmne problem. The cures are there. Let's get them to those in pain now! not ten or twenty years from now.
The AIDS community organized and their pressure forced the goverment to find highly successful treatments in less than ten years. When the AIDS comunity organized, conventional wisdom condemned it as a fool's errand. At the time no one believed that any way would be found to stop AIDS for fifty years or more. Yet in less than ten years, AZT was discovered and given to patients. We are in a far better position today than the AIDS community was in the 1980's. The cures are here now. We only need to demand that ALL autoimune patients have access to them.
Our family of four has dealt with immune dysfunction for over thirty two years. At first the health problems were mostly mine. Starting in our first years of marriage, I had unexplained angioedema, urticaria, apnea,and synope. When my wife and I discovered that the symptoms could be alleviated by the elimination of a couple of foods, eggs and tomatoes, we were relieved.
Our doctors at that time assured us that the problems were all psychological in nature. Even the sudden loss of lung function was not dangerous. It was hysteric. Once I lost conscousness, my lungs would open and I would breath normally again. No one died of such things. (At that time, 1977, there were thousands of asthma deaths every year but apparently no one told the family doctors.) In fact all autommune disease of any kind in the 1970's was caused by stress. Just cut out the stress and worry in your life and you could be like every one else. All immune disease was the fault of the afflicted. Every doctor knew that and they graciously assured us all of that. Don't worry about passing it on to children. As long as they are not stressed and hysteric like you, they won't have it.
We decided to have children. We had two fine sons. The eldest is a sucessful lawyer. No sign of any autoimmune disese or immune dysfunion. The youngest has severe reactions to foods and medicines as I did. In addition he has very severe psoriatic arthritis. He cannot walk unaided, use his hands to lift a metal fork or manipulate a computer mouse. He cannot even talk as the tendons in his vocal cords are affected. He is in constant pain.
He was a brilliant student in high school and college. He had a wonderful belly laugh that I shall never hear again. He had a beautiful singing voice. He played the keyboard. He was dating lovely, sweet, wonderful girls. His college years were his golory. For a time he was the editor of his college newspaper. Then in his senior year he developed what we thought was a strained knee. It wasn't. It was the first attack of psoriatic arthritis. Less than a year after his diagnosis, he could no longer use his hands or talk or walk without canes. That diagnosis was in January of 2004. He was totally disabled and unable to care for himself by January 2005.
I want to see him cured before I die. I am extremely ill now, barely able to eat any food. When I try I have severe symptoms of nausea, intesinal bloating, spasms, diarrhea and unbelieveable unrelenting bowel pain. I have lost twenty five pounds in two months and there is no sign of improvement. My time is running out. I have tried all the rescue meds--prednisone, Sol-u-medrol, antihistaines, antibiotic treatment. All worked initially but I reacted to each in turn with life threatening adverse reactions. Today a Chinese herbalists who also had an MD told me that he could not help me because I could not take herbal teas without syncope. Even though he takes complicated cases, he saw no hope for me.
We need these cures now.
1 comment:
I hope that this note will find you, and that you and you son are still alive. I suffer from several autoimmune illnesses and am in the process of being diagnosed with an even larger autoimmune syndrome. It was terribly discouraging until I found out about an antibiotic protocol that is actually helping hundreds of people to heal from autoimmune illnesses including Rheumatoid Arthritis, Scleroderma and MCTDs. I am not sure what kind of disease your son suffers from but I also read today abbout a combined antibiotic protocol that also cured Multiple Sclerosis.
There is actually a large body of research about all of this that you can find on PubMed and also through the Roadback Foundation. It relates to bacteria such as mycoplasma and chlamydia pneumonae (sp?) which cause autoimmune disease but can be put into remission through long term low dose antibiotics.
I spoke at length on the phone to a woman whose daughter attends UCSD and is now a NCAA champion swimmer but who had rapidly progressing scleroderma at age 16 and was expected to die. She has been on the antibiotic protocol for over four years and has no sign of illness.
I hope this information can help your family. There is a center in Riverside, CA where I am trying to get an appointment to deal with my own autoimmune disease and it sounds like you live close enough that they might be able to help your son too. The doctor's name is Dr. Franco and I think it is called the Arthritis Center.
Good luck with everything. I do not believe that autoimmune illness is an act of God. I think it is a bacterial infection just like so many of the others that we get, and that it can be put into remission if not completely eradicated. I have spoken to many people now who have actually had really great success with the antibiotic protocol.
Best wishes.
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