slayadragon
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I am aware of eight CFS patients who have publicly told credible stories about having achieved full wellness. They all were moderately to severely disabled by what was clearly CFS.
I would be delighted to hear about more patients who clearly had "real" CFS and who have achieved wellness, of course.
Note again that these are patients who have told their stories publicly. It seems to me that if we're going to evaluate case studies, they need to have been put into the public forum. Otherwise they seem to me to be merely hearsay and subject to distortion.
I'm defining "wellness" here as not having any limitations in activity, the ability to be physically active (including exercise), and the relief of all CFS symptoms. I'm not defining it in terms of lab tests. (Actually, only a couple of these patients have had any lab tests measuring their wellness from CFS. Perhaps once you get well, those tests stop seeming important.) Some of these patients still report some cognitive limitations compared to before they got sick, but they do not cause the restriction of what the vast majority of people would consider to be a normal life.
People who feel "a lot better" but who still have limitations in terms of what they can do compared to healthy people are not counted as being truly well, in my definition.
1)A woman who goes by the name of StormySkye. She was a member of ProHealth for a long time but eventually (like so many others) got kicked off She was very ill and had all the typical CFS symptoms. Her illness went on for about a dozen years. She attributed her wellness to the use of supplements that supported her immune system, along with some natural detox (such as seaweed). More recently, she has stated that pretty extreme avoidance of mold toxin has been part of her life since a couple of years before obtaining wellness and that she's very bothered by it when she gets around it. She now lives in a tiny rural town in a low-population Midwest state and avoids going to the nearest "big city" (population 300,000 and an hour away) or any other metropolitan area. She states that she is active physically and fine cognitively. She was a homemaker prior to her illness and has remained in that role. If she feels a building is "bad," she won't go in it. If objects feel "bad," she gets rid of them. Until recently, she wasn't sure what it was that she was avoiding. About a year ago, she concluded that it was toxic mold. She moved out of a house that she thinks had a mold problem a few years before obtaining wellness. She's been well for several years.
2) Erik Johnson (also known as ErikMoldWarrior) was one of the original Incline Village patients in 1985 who led to the identification by the CDC of CFS as a an official disease. He had all the immunological and other markers recognized by CFS doctors. He was extremely ill for several years, recovered most of his health by avoiding mold to a moderate extent, relapsed when he was less attentive to mold avoidance, then obtained full wellness in 1998 (and has remained well since then). He got well solely by learning to identify very small amounts of mold and avoiding it. He actively engages in detox by going to pristine areas. He took a six-month course of doxy at one point, but expresses skepticism about whether it helped him. His cognition is not 100% of what it was before he got sick, but otherwise he is wholly well as long as he avoids mold. He is especially well physically, climbing the highest mountain in the U.S. each year. He has a full-time job. He lives in a city and sometimes goes "over his limit" in terms of his exposures, but recovers quickly as long as he gets back to a pristine area for a little while. He is profiled in “Mold Warriors.”
3) Mike Dessin (also known as Patient X, as described by Cort Johnson) was extremely ill with CFS. His illness was initiated when he was living in an extremely moldy house. He moved around a whole lot and got rid of all his stuff from that house. After several years, he moved into a house that he claims is excellent in terms of mold toxin. He seems to be aware of mold in his environment. He achieved wellness, he says, as a result of neural therapy, acupuncture and homeopathy, all of which are "energetic" treatments. He says he's wholly better physically (in terms of activity and exercise) and mostly better cognitively. To my knowledge, he has not yet gone back to work but is planning to do so at some point in the near future. He lives in the Midwest and has been well for less than a year.
4) Jonathan Wright is profiled in "Mold Warriors." He had all the classic (and severe) CFS symptoms. He learned about Erik's approach on a Yahoo website called "Sick Buildings" and followed it. He lived in a tent in the wilderness for a while, then eventually got an RV. He still lives only in wilderness areas and avoids cities. He tolerates short exposures to moldy buildings (a few hours a day) for work. He uses cholestyramine and has treated candida and other pathogens. He reports full wellness in terms of physical activity and energy levels. He works full-time as a guide at Rocky Mountain National Park in summer, and has held jobs in Arizona and other places in the winter months. He's been well since 2005.
5) A woman named Doris has been on various web sites, including the Yahoo ones of SickBuildings, CFS_CFIDS_ME and CFS Research. She lives in Reno. She met Erik and learned about his approach. She made some efforts to avoid mold and took cholestyramine. She may have done some other treatments too. She reports full wellness, though I have yet to get details from her.
6) I had CFS for about 12 years, worsening over time until it became severe. About two years ago I started following Erik's avoidance approach, eventually being trained personally by him. As of a year ago, I achieved full wellness (with some cognitive limitations) as long as I avoided mold scrupulously. I then took doxy for three months for a new Lyme infection. I took a whole lot of cholestyramine when I was in really pristine areas. About three months ago, I started taking Famvir. Several weeks ago, I started on Valcyte. I got only a tiny bit of fatigue from the Valcyte, but my reactivity went up a lot. Within a few days after starting Valcyte, my cognition improved to where it was prior to getting sick. I decided to take a little break from the Valcyte last week. The extent to which mold is bothering me since starting on the break from Valcyte has gone down to the point where it's not an issue for me at all at this moment, either in the outside air or in buildings. (I'm currently in city that I've previously found to be moderately bad in terms of mold.) My functioning is 100%. I am physically 100%, easily engaging in exercise. After continuing on this break for a while, I'm going to go back to Valcyte. I’m keeping my fingers crossed that this will cause my reactivity to go down permanently. Then it will be like I never had CFS at all. Hopefully in this job market, I then will find a position suited to my background in a reasonable period of time. (I guess it's nice to have ordinary problems, but the economy is worrisome. By far the biggest worry in my life at this point.)
7) Josh/545 used to post on ProHealth. He is in his early 20's. When he first posted on ProHealth, he had been not working for maybe less than a year. His symptoms, as CFS patients go, were moderately bad. He concluded that he had a toxic mold problem, possibly in his apartment and also in a former workplace (he was doing an internship in a prison). He moved out of his apartment and got rid of all his possessions, while at the same time starting on treatment of Lyme as well as other drugs/supplements. He soon reported a good bump in wellness. He moved to a section of town (outside Washington D.C.) that felt good to him. He pursued treatments for Lyme and other immune problems, stating that he feels those have been helpful. I need to ask him again about whether he's done any detox. He currently reports being at 100% in all respects, without having to avoid mold. He has a mentally challenging job and is physically active (e.g. jogging regularly). He's been wholly year for somewhere under two years.
8) Gary/gasolo has posted on ProHealth. He is a surgeon. He was working part-time and had been sick for (I think) a couple of years when he started on a six-month course of Valcyte. He got much worse while on Valcyte, then over the next year recovered to the point where he is working full-time and able to exercise. I've not been able to get any details out of him with regard to where he lives or whether changes in his environment (such as a move) might have contributed to his wellness. He's been well for somewhere over than a year.
My initial conclusion from this is that mold seems to be an underlying factor of CFS, but that immune issues are also related. In seven of the eight cases here, moderate to extreme mold avoidance was present. Active detoxification was pursued (and stated to be relevant to achieving wellness) in six of the eight cases. Active immune system support and/or pathogen killing was pursued (and stated to be relevant) in six of the eight cases.
Again, further thoughts are welcome.
If I have any details of these case studies wrong, please let me know that too.
Despite some trepidation, I'm going to post this on ProHealth as well, just to see if we can get any more case studies.
Lisa
I would be delighted to hear about more patients who clearly had "real" CFS and who have achieved wellness, of course.
Note again that these are patients who have told their stories publicly. It seems to me that if we're going to evaluate case studies, they need to have been put into the public forum. Otherwise they seem to me to be merely hearsay and subject to distortion.
I'm defining "wellness" here as not having any limitations in activity, the ability to be physically active (including exercise), and the relief of all CFS symptoms. I'm not defining it in terms of lab tests. (Actually, only a couple of these patients have had any lab tests measuring their wellness from CFS. Perhaps once you get well, those tests stop seeming important.) Some of these patients still report some cognitive limitations compared to before they got sick, but they do not cause the restriction of what the vast majority of people would consider to be a normal life.
People who feel "a lot better" but who still have limitations in terms of what they can do compared to healthy people are not counted as being truly well, in my definition.
1)A woman who goes by the name of StormySkye. She was a member of ProHealth for a long time but eventually (like so many others) got kicked off She was very ill and had all the typical CFS symptoms. Her illness went on for about a dozen years. She attributed her wellness to the use of supplements that supported her immune system, along with some natural detox (such as seaweed). More recently, she has stated that pretty extreme avoidance of mold toxin has been part of her life since a couple of years before obtaining wellness and that she's very bothered by it when she gets around it. She now lives in a tiny rural town in a low-population Midwest state and avoids going to the nearest "big city" (population 300,000 and an hour away) or any other metropolitan area. She states that she is active physically and fine cognitively. She was a homemaker prior to her illness and has remained in that role. If she feels a building is "bad," she won't go in it. If objects feel "bad," she gets rid of them. Until recently, she wasn't sure what it was that she was avoiding. About a year ago, she concluded that it was toxic mold. She moved out of a house that she thinks had a mold problem a few years before obtaining wellness. She's been well for several years.
2) Erik Johnson (also known as ErikMoldWarrior) was one of the original Incline Village patients in 1985 who led to the identification by the CDC of CFS as a an official disease. He had all the immunological and other markers recognized by CFS doctors. He was extremely ill for several years, recovered most of his health by avoiding mold to a moderate extent, relapsed when he was less attentive to mold avoidance, then obtained full wellness in 1998 (and has remained well since then). He got well solely by learning to identify very small amounts of mold and avoiding it. He actively engages in detox by going to pristine areas. He took a six-month course of doxy at one point, but expresses skepticism about whether it helped him. His cognition is not 100% of what it was before he got sick, but otherwise he is wholly well as long as he avoids mold. He is especially well physically, climbing the highest mountain in the U.S. each year. He has a full-time job. He lives in a city and sometimes goes "over his limit" in terms of his exposures, but recovers quickly as long as he gets back to a pristine area for a little while. He is profiled in “Mold Warriors.”
3) Mike Dessin (also known as Patient X, as described by Cort Johnson) was extremely ill with CFS. His illness was initiated when he was living in an extremely moldy house. He moved around a whole lot and got rid of all his stuff from that house. After several years, he moved into a house that he claims is excellent in terms of mold toxin. He seems to be aware of mold in his environment. He achieved wellness, he says, as a result of neural therapy, acupuncture and homeopathy, all of which are "energetic" treatments. He says he's wholly better physically (in terms of activity and exercise) and mostly better cognitively. To my knowledge, he has not yet gone back to work but is planning to do so at some point in the near future. He lives in the Midwest and has been well for less than a year.
4) Jonathan Wright is profiled in "Mold Warriors." He had all the classic (and severe) CFS symptoms. He learned about Erik's approach on a Yahoo website called "Sick Buildings" and followed it. He lived in a tent in the wilderness for a while, then eventually got an RV. He still lives only in wilderness areas and avoids cities. He tolerates short exposures to moldy buildings (a few hours a day) for work. He uses cholestyramine and has treated candida and other pathogens. He reports full wellness in terms of physical activity and energy levels. He works full-time as a guide at Rocky Mountain National Park in summer, and has held jobs in Arizona and other places in the winter months. He's been well since 2005.
5) A woman named Doris has been on various web sites, including the Yahoo ones of SickBuildings, CFS_CFIDS_ME and CFS Research. She lives in Reno. She met Erik and learned about his approach. She made some efforts to avoid mold and took cholestyramine. She may have done some other treatments too. She reports full wellness, though I have yet to get details from her.
6) I had CFS for about 12 years, worsening over time until it became severe. About two years ago I started following Erik's avoidance approach, eventually being trained personally by him. As of a year ago, I achieved full wellness (with some cognitive limitations) as long as I avoided mold scrupulously. I then took doxy for three months for a new Lyme infection. I took a whole lot of cholestyramine when I was in really pristine areas. About three months ago, I started taking Famvir. Several weeks ago, I started on Valcyte. I got only a tiny bit of fatigue from the Valcyte, but my reactivity went up a lot. Within a few days after starting Valcyte, my cognition improved to where it was prior to getting sick. I decided to take a little break from the Valcyte last week. The extent to which mold is bothering me since starting on the break from Valcyte has gone down to the point where it's not an issue for me at all at this moment, either in the outside air or in buildings. (I'm currently in city that I've previously found to be moderately bad in terms of mold.) My functioning is 100%. I am physically 100%, easily engaging in exercise. After continuing on this break for a while, I'm going to go back to Valcyte. I’m keeping my fingers crossed that this will cause my reactivity to go down permanently. Then it will be like I never had CFS at all. Hopefully in this job market, I then will find a position suited to my background in a reasonable period of time. (I guess it's nice to have ordinary problems, but the economy is worrisome. By far the biggest worry in my life at this point.)
7) Josh/545 used to post on ProHealth. He is in his early 20's. When he first posted on ProHealth, he had been not working for maybe less than a year. His symptoms, as CFS patients go, were moderately bad. He concluded that he had a toxic mold problem, possibly in his apartment and also in a former workplace (he was doing an internship in a prison). He moved out of his apartment and got rid of all his possessions, while at the same time starting on treatment of Lyme as well as other drugs/supplements. He soon reported a good bump in wellness. He moved to a section of town (outside Washington D.C.) that felt good to him. He pursued treatments for Lyme and other immune problems, stating that he feels those have been helpful. I need to ask him again about whether he's done any detox. He currently reports being at 100% in all respects, without having to avoid mold. He has a mentally challenging job and is physically active (e.g. jogging regularly). He's been wholly year for somewhere under two years.
8) Gary/gasolo has posted on ProHealth. He is a surgeon. He was working part-time and had been sick for (I think) a couple of years when he started on a six-month course of Valcyte. He got much worse while on Valcyte, then over the next year recovered to the point where he is working full-time and able to exercise. I've not been able to get any details out of him with regard to where he lives or whether changes in his environment (such as a move) might have contributed to his wellness. He's been well for somewhere over than a year.
My initial conclusion from this is that mold seems to be an underlying factor of CFS, but that immune issues are also related. In seven of the eight cases here, moderate to extreme mold avoidance was present. Active detoxification was pursued (and stated to be relevant to achieving wellness) in six of the eight cases. Active immune system support and/or pathogen killing was pursued (and stated to be relevant) in six of the eight cases.
Again, further thoughts are welcome.
If I have any details of these case studies wrong, please let me know that too.
Despite some trepidation, I'm going to post this on ProHealth as well, just to see if we can get any more case studies.
Lisa