Re:Ask HN: Dealing with controversy
by Mz on Monday October 26, 2009 @11:01PM
(#904698)
I have a website where I share info as best I can: http://www.healthgazelle.com And I participate in discussions in online forums. EDIT: And I joined HackerNews because I concluded that I need to learn a programming language and write a simulation to overcome the information gap between my mental model and current mental models.
"Atypical" is not a specific form per se. It is a term used to describe diagnoses that fall outside of "classical" symptoms/experiences. In recent years, more mutations are being identified and generally milder expressions are being recognized as still causing the same general profile of problems, but to a usually less severe degree. My mutations and my sons mutations have not been identified, in part because my doctor's request for a more comprehensive test was denied by my insurance company. (This is one of the points used to attack me and say I don't "really" have CF -- never mind that I spent about a year at death's door and came back from that.)
I have had a few people try some of my suggestions and report good results. Two of the most dramatic: Someone with an antibiotic resistant infection went from testing as sensitive to 7 drugs to testing sensitive to 15 drugs in just 3 months. He also generally feels better, sleeps better, etc. In another case, a mom with a young teen whose lungs were in such bad shape they were talking about listing her for transplant began using some of my suggestions. About a week later, her child was so dramatically improved they apparently weren't discussing listing her anymore. (I have had updates from the first person but not the second one, so that may no longer be true.) Her doctor did express interest into looking into one of the supplements I had suggested.
Most research that I know for treating CF is drug research. I have gotten off all drugs. Most research is funded by drug companies. At the moment, I really don't see doing any studies or talking anyone in the establishment into being interested in what I am doing. I believe the top-down approach to treatment which is the current norm is part of the problem. So I believe that the solution requires a grass-roots movement, not more edicts from on high.
"Atypical" is not a specific form per se. It is a term used to describe diagnoses that fall outside of "classical" symptoms/experiences. In recent years, more mutations are being identified and generally milder expressions are being recognized as still causing the same general profile of problems, but to a usually less severe degree. My mutations and my sons mutations have not been identified, in part because my doctor's request for a more comprehensive test was denied by my insurance company. (This is one of the points used to attack me and say I don't "really" have CF -- never mind that I spent about a year at death's door and came back from that.)
I have had a few people try some of my suggestions and report good results. Two of the most dramatic: Someone with an antibiotic resistant infection went from testing as sensitive to 7 drugs to testing sensitive to 15 drugs in just 3 months. He also generally feels better, sleeps better, etc. In another case, a mom with a young teen whose lungs were in such bad shape they were talking about listing her for transplant began using some of my suggestions. About a week later, her child was so dramatically improved they apparently weren't discussing listing her anymore. (I have had updates from the first person but not the second one, so that may no longer be true.) Her doctor did express interest into looking into one of the supplements I had suggested.
Most research that I know for treating CF is drug research. I have gotten off all drugs. Most research is funded by drug companies. At the moment, I really don't see doing any studies or talking anyone in the establishment into being interested in what I am doing. I believe the top-down approach to treatment which is the current norm is part of the problem. So I believe that the solution requires a grass-roots movement, not more edicts from on high.