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Do CFS Patients Ever Get TRULY Well?

Discussion in 'General Treatment' started by slayadragon, Oct 1, 2009.

  1. slayadragon

    slayadragon Senior Member

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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
  2. Wayne

    Wayne Senior Member

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    CFS Success Stories

    Hi Lisa,

    Thanks much for this synopsis. I hadn't been aware that 545 and Stormskye had both recovered, or Gasolo (Gary) either. It's nice to know. I'm heading out on my trip across country tomorrow (hopefully) and will be trying to tune in to any mold exposures I run into along the way. Who knows, it could turn out to be key for me as well.

    Kind Regards, Wayne
  3. acer2000

    acer2000 Senior Member

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    Mold...

    I can tell you that I had Dr. Shoemaker's workup and I didn't have any of his known susceptible genes. I did have the "low MSH" one, but my MSH when measured, while not "optimal" wasn't all that low. I have all the symptoms of CFS. So I dunno... I suppose I might not have "CFS", but mold doesn't seem to have much to do with my illness state. I am "allergic", but I am not succeptible to the mold toxins like shoemaker describes...

    I did however go out on a limb and take CSM for 2 or 3 months to see if it would help and it didn't...
  4. Min

    Min Senior Member

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    Before recovery stories can be verified a diagnostic test (perhaps several as we are perhaps suffering from a number of different illnesses) needs to be developed.

    I don't believe mould has anything to do with my M.E.. I have tested positive by live blood microscopy for different bacteria and parasites, but can't afford testing for viruses or mitochondrial dysfunction.
  5. jenbooks

    jenbooks Guest

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    Hi, Lisa. Thanks for compiling those stories. If you wish to compile them I would hope you can get the people themselves to write them up. Sometimes in retelling there are inaccuracies based on bias. For instance, I need to go back and read Mike's story on Cort's site, but I remember him having low grade symptoms he ignored for quite a while. I don't remember him highlighting a moldy house as the start of his symptoms. Moreover he got sicker and sicker even after leaving the house. So, for instance, I would have considered (if not reading your summary) mold rather incidental for Mike tho maybe he doesn't. His own story emphasizes other aspects.

    Also, I don't totally agree with your criteria for getting well. I might classify someone who is "a whole lot better" as equally healthy to someone who has to live away from all triggers or they get sick. Even if they feel great away from all triggers, they have had to radically alter their lifestyle because they are not able to deal with toxins. Either that means genetically, or else they have some kind of infection or toxic load that their body can handle only in a very pure environment. Since those people feel quite well in a very isolated lifestyle they are not "totally well." So in the interests of realism and not being too strict, I'd say they count as well as people who haven't radically changed their lifestyle but feel a whole lot better.

    For others, the author of Cure Unknown, having had lyme and babesia, certainly manifested CFIDS--exhaustion, I think she describe it as "black gullies", inability to work at her desk for more than a few hours, all kinds of symptoms, chronic daily headaches etc. She's quite well now after antibiotics and antimalarials in different combinations for 4 years. No other inputs, nutritional or lifestyle. She works fulltime at a stressful job and travels when she wishes.

    If you go onto Bionic 880 on yahoogroups.com you will find Selma, who has gotten well through herbs, photons, and homeopathic remedies. Her whole story is on there in various posts. You will also find Sheryl, moniker bejoy, who seems to have recovered nicely from mold/lyme wreckage with photons and homeopathic remedies. She also ozonated the heck out of her moldy basement and ozone blasted any moldy belongings.

    If you go onto lymenet.com and read through Metallic Blue's recent post "Nothing is Working" (and HE has had a mold problem in his home and he did remediate but for all we know it is now contributing to his horrible lifelong lyme and other tickborne infections), you can find SixGoofyKids' posts. She did a lot of regular antibiotic treatment but would always relapse as soon as she went off. Then she did photons and homeopathic nosodes--went to Germany for it, came home with a machine. She's feeling totally well now, sleeping normally, exercising, and going back to teaching Pilates.

    However, in the interests of objectivity, retelling the stories in brief doesn't work as you are going to sift them through your own lens of what is important. So those people need to submit their own stories if willing and to state in their own words what made them sick and what got them well.

    I am very allergic to mold. My immune system is really low because of lyme and it makes me sicker than it used to but it always did. When I stayed in a moldy home in puerto rico I had flareups of yeast infections and mood changes. When I visited a colleague in Los Angeles and was to sleep in their basement den I got such a bad asthma attack we had to leave in the middle of the night and go to my friend's mother's condo at 2 am, where I quickly recovered. When I tried to live in my ex-husband's home in Australia in which there was a lot of mold spores because of high humidity, some water damage, and the fact that it had tons of western red cedar panelling, I could barely breathe from asthma.

    Now that the cooler weather has come, I almost instantly experience a huge exacerbation in asthma and stuffed sinuses in my place (since yesterday) because I had to turn off the window fans. It's probably worse this year than last year as I am increasingly sensitized. Since I can sort of smell the mold with my highly sensitive nose (most people couldn't) and I smell it in other apartments in the building--and if they DO have the problem I can barely be in their apartment--anyway, I don't know exactly what it is but I realize I really can't live with it. But I'm not sure that's the same thing as mold toxins. I will never know how much lyme has to do with my inability to handle it now and how much has to do with the two years of crazy demolition in our building which caused huge leaks and floods all over the building, including 11 in my own home over 2 years. My neighbor had a bad one--it went down 8 floors (pipes would burst during the careless demolition) and he even had green mold spots on his ceiling at one point. He has some sinus issues and uses a neti pot. Nothing like me but I secretly think its the mold spores.

    Re: Your story, a lot hangs in the balance over the next year or two, if you do return to typically "moldy" regular life, as you say you are in a moderately moldy area now, and you maintain wellness. The question is will a return to regular life and a job actually send you down the rabbit hole again or have you recovered from your stachy poisoning enough to return to life. I know your view is you used this time to get rid of stachy mycotoxins in pure environments and that would allow you to get well. My jury is out until I see longterm how your life unfolds. However, as I always said, I could see a wilderness lifestyle as viable if you were totally healthy doing it. It might be lonely but viable.
  6. m1she11e

    m1she11e Senior Member

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    recovery

    Im not sure we will ever know the real numbers as to who "recovers." Certainly many people never post on any of these boards. Many people never get actual diagnosis either. Do we even all agree on what CFS is or if we all have the same causes of our symptoms?

    More recovery stories would be great. There are so many stories of people who never get "well."

    I downloaded a book that has 50 recovery stories. I love it. It was only 8.00 I think to download, or you can purchase the book. I believe the stories are legit because I have read some of them before. They arent selling a treatment because they all get well using different methods. Here is the link...

    http://www.alexbarton.co.uk/cfsrecovery-stories.htm

    I think it is good to read about and focus on the people who get well. These stories are great because they are in reach for everyone.

    I will always choose to believe that people can completely recover from ANY illness!

    Michelle
  7. liverock

    liverock Senior Member

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    I think most people I have heard about recovering from CFS have recovered within 2 years of onset of the illness.

    It seems harder to recover back to 'normal 'the longer the illness goes on.

    Dr Martin Pall, the CFS researcher, went down with CFS in 1997 and immediately stopped working(we should all be so lucky to be able to afford to do this), and spent 18 months in bed until he felt completely cured.

    I think the best hope for a complete cure is to follow his example, I know I wish I had instead of struggling on and eventually having to retire from work anyway.
  8. dannybex

    dannybex Senior Member

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    Hi Liverock,

    I know about 8 people just from my local support group who have recovered or are recovering. Two or three are at about 70-80%, but five of them have recovered 95-100% and have remained well for anywhere from 2-10 years. (And with maybe 1 or 2 exceptions, most of these folks no longer attend meetings...they might pop in once a year.)

    One was sick for 16 years -- the worst case I've ever heard about and met -- even her doctor was surprised she has completely recovered, and the other was sick for 17 years (and she's in her late 50's) and after plateauing at about 75%, she considers herself 95% well...for the past 2 years or so. Another woman is in her late sixties...she's been hiking during the summers, and cross-country skiing during the winters...something I couldn't do when I was HEALTHY! :)

    So it is possible...and like others have said, it's probably difficult to measure, and really know how many have recovered. I'm sure most run screaming from 'the community' as they're so eager to get on with their life, as Martha Kilcoyne did...until she wrote her book 10 years later.

    Best,

    Dan
  9. jenbooks

    jenbooks Guest

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    Danny, where is your local support group?
    I think since each of us has different triggers in different order different pathogens different genetics different toxic load different detox abilities ad infinitum----
    Tho we can often get well by overlapping methods, each of us will have to be patient thru endless trial and error to what works for us.
    And it is expensive to do so.
    That is the hard part.
  10. Cort

    Cort Phoenix Rising Founder

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    Well Patients

    Great post!

    You can add Martha Kilcoyne (Defeat chronic fatigue syndrome author), Bruce Campbell (CFID's Self Help), a patient Dr. Peterson referred to who went on Vistide and became completely well, Andrew Chia - Dr. Chia's son.

    Two people reported to me that they got completely well (ie as in bicycle trips around Europe) one by the Amygdala retraining technique and one By the Lightning Process. Another person I communicated with became completely well after a sleep study indicated he had a sleep disorder and the doctor gave him a novel sleep drug treatment regimen that worked.

    Martha Kilcoyne actually just had a relapse which she recovered from. Interestingly it occurred after a series of stubborn infections - she said there was a point at which she could feel it shift from a normal infection to CFS. She went back to her old protocol for dealing with ME/CFS.

    http://aboutmecfs.org/blog/?p=908

    Dr. Klimas has said that people get well just not in enough numbers so that we can figure out what's going on. It sounds like they're throwing darts and sometimes they hit the bull's-eye and they're not sure why they don't hit it more often.

    Staci Stevens believes that very very few people really get well; she believes that many of the well people get a lot better but they still have to manage themselves. I would note that Ashok Gupta still does the Amygdala Retraining Program or some semblance of it on himself.
  11. slayadragon

    slayadragon Senior Member

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    recoveries

    Do those of you who have mentioned recoveries know how I can get in touch with those folks?

    Or read about their stories?

    Thanks for the comments!

    Lisa
  12. Cort

    Cort Phoenix Rising Founder

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    As I remember Dr. Lapp says that duration doesn't necessarily affect one's ability to get well; he's had patients of all different durations get well. Obviously with Mike Dessin's case severity isn't necessarily as important a factor as one would think. The first doctor I went to told me "I was easy"; I was nowhere near as ill as some of her patients - but nothing she did had any effect on me at all. There's also patient 2 in the New Day treatment group; she's not nearly as well as patient one - but the Dr. thinks she'll be much more difficult to treat.

    There's an interview with Martha Kilcoyne on this page:

    http://aboutmecfs.org/HeadPgs/Interviews.aspx. The Blog has her website address on it; that should have an e-mail address http://aboutmecfs.org/blog/?p=908

    Bruce Campbell via his website At CFIDS Self-Help, Andrew Chia via Dr. Chia - think there's a contact number on Dr. Chia's interview.

    Most of the other people I'm not in touch with.
  13. Cort

    Cort Phoenix Rising Founder

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    There's also Dr. Martin Lerner - he obviously recovered quite well - he's 80 and still working five days a week!

    How could I forget Diana's story? A horrible and long-lasting case of ME/CFS that was completely resolved by long duration antibiotic treatment aimed at chlamydia pneumoniae.

    http://aboutmecfs.org/Story/StoryDiana's.aspx

    Marlene resolved a four-year case of CFS through immune enhancers and other treatments.

    http://aboutmecfs.org/Story/StoryMarlene's.aspx
  14. slayadragon

    slayadragon Senior Member

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    case examples

    All these case examples are really terrific. I'm looking forward to reading them.

    Thanks so much for supplying them!

    Lisa
  15. dannybex

    dannybex Senior Member

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    Hi Jen...

    It's in Seattle, Wa.

    I agree with your overall assessment...and think that's precisely why this is so hard to treat -- because we're all different, we all have different histories, genetics, triggers, toxic loads.

    Compounding this is the fact that there are so many different labs that specialize in finding/assessing the different triggers, and many, if not most are not covered by insurance, certainly not medicaid.

    That is definitely the hard part. And frustrating.

    Deeeeeeeeeep breath. And (as Gupta would say) "Let go........."

    d.
  16. dannybex

    dannybex Senior Member

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    I can ask some of them...but many are VERY reluctant to speak, as in some cases, when they've done so, they've been ruthlessly attacked by others (which is just bizarre to me). One or two of them might be recognizable names to you but I should get their permission first before posting any names.

    d.
  17. Dreambirdie

    Dreambirdie work in progress

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    strange recoveries

    I know three people who have recovered, and they have REALLY STRANGE stories of it.

    One, a man who is now in his 60's and was REALLY ill for about 20 years with MCS and CFS, healed himself primarily by living out of his car in the desert for 8-10 years, (to avoid the toxicity and mold of being in civilization), and by taking large doses of Sunrider herbs. He was/is a highly analytical person, studied this condition extensively, consulted many of the "experts," and TRIED EVERYTHING, but attributes his healing mostly to the Sunrider products. He now travels all over the world and as he puts it is "having a real good time."

    Another person, a woman now in her late 40's, was ill for about 15-20 years with MCS (more than CFS), and she healed herself with Prozac. Her main big issue was sleep, and after trying many of the natural therapies, herbs, supplements for many years, she finally took some Prozac, which healed her sleep, and this, she claims corrected her brain imbalances to the point where she was no longer sensitive to cehmicals and could function normally in the world.

    The last person, a woman who is now in her mid 40's and was ill with CFS for less time than the above (maybe 5 or 6 years) healed from it AFTER HAVING A STROKE! I kid you not! She had CFS, and at the same time, they found a growth in her brain, which they did surgery to remove. As a result of the surgery she had a stroke, and after the stroke her CFS was gone. She had another five years of intense rehabilitation to deal with, but CFS has not recurred in this time.
  18. Cort

    Cort Phoenix Rising Founder

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    it's great to hear about these recovery stories but at the same time the diversity of approaches is more than a little humbling; we surely are a very mixed bag! (If any 'disease' needs lots of money and lots of research it's this one!)
  19. Michael Dessin

    Michael Dessin Senior Member

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    Mold/Recovery

    I'm not too sure mold was my initiating factor in getting sick. I don't think mold can be solely responsible for causing all of our conditions.

    However mold does have toxic properties and can trigger changes in gene expression.

    If we are genetically prone to developing ME/CFS, mold would make sense as being one of several culprits.

    When I originally got sick, I'm not sure if my house had mold. All I rememebr is a horrible fever and exhaustion that lasted roughly a week and I was never the same thereafter.

    I can say, when I took a drastic turn for the worse...my house was inundated with mold. But at the same time, my house got bombed for fleas as well.

    I think it was the combination of toxic assault that lead to my demise.

    I think it would be extremely difficult to recover while still being exposed to certain toxins, but maybe not impossible if the immune system were to correct itself.

    I get a lot of terrible emails of those who are really in bad condition. It's refreshing to hear of these recovery stories mentioned on this thread.

    I mentioned this before, it's also very important for those who have recovered, to keep as many labs as possible to benefit others in the future.

    Thanks for this post Lisa.

    Mike
  20. Frank

    Frank Senior Member

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    Michael fungus and it's metabolites(mycotoxines) are everywhere! You just don't see them. For example on corn.

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