Do CFS Patients Ever Get TRULY Well?

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Oct 1, 2009.

  1. Slayadragon

    Slayadragon New Member

    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 Stormy.  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 website 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.  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.


    ADDENDUM: Josh/545 writes to me the following:

    I'd consider myself recovered for that matter. I certainly feel a need
    to keep my fingers crossed, stay on my regimen, and continually try to
    improve it, but all things considered I feel pretty good.

    As for detox, I've never systematically gone about it, but I've
    definitely felt like it's occurred as a beneficial side-effect of
    various drugs/supplements. Wobenzyme in particular, I suspect, has had
    a detox effect, as it will occasionally make me sweat, smell, and
    leave a strange taste in my mouth. Wobenzyme sort of has a strange
    uptake; you take it on an empty stomach and wait 45 minutes (or more)
    before eating. Near the end of the 45 minutes I'll sometimes feel
    detox signs/symptoms come on pretty heavily, but they go away after
    eating (and I doubt it's just hunger). I've been on it for about a
    year, and over time it's produced those detox symptoms less and less

    Diet and certain supplements help as well, in particular salt, garlic,
    and vitamin c. When the Wobenzyme has that effect on me, I'll usually
    crave food with garlic, which I think helps flush out toxins. When I
    was really sick, I craved garlic all the time, and almost every other
    time I ate it, it'd make me sweat and I'd almost smell the garlic on
    my skin. (Occasionally I'll feel like my stomach isn't digesting food,
    even though I just ate, and salt along with vitamin c usually helps

    I've also briefly tried Questran for about a month. It didn't seem to
    help much.
    [This Message was Edited on 10/03/2009]
  2. AllWXRider

    AllWXRider New Member

    Complete recovery. Bad CFS. Now she's helping us.

    Dr. Jacob Teitelbaum got hit with CFS and wrote a great book on it. From Fatigue to Fantastic.

    I'm am getting well. I just discovered Lyme as a root cause, BUT I also had Lead and Mercury toxicity. The All Weather Rider will ride his motorcycle again!!!!!! Loud pipes...sorry...I have to celebrate!!!!
  3. gapsych

    gapsych New Member

    Patient X is being treated by homeopathy. Homeopathy is water. Homeopathy is hokum.

    While he is getting well with this dubious neural therapy he is also getting IV nourishment, has gone through numerous treatments. How can we tell what is making him well if that is indeed the story?

    No one who gets down to 120(?) pounds would recover his muscles in such a short time.

    If this story is indeed true then where are the headlines in the papers? Why aren't people dancing in the street?

    Why,is this doctor not revealing what he is doing. Is what he is doing against the law or more likely unethical?

    This doctor is going to be found and this story is being investigated by several whistle blowers. I am not talking about anyone on this board.

    I like to give people the benefit of the doubt but in this case the story did not add up from the first sentence.

    I just can't believe the people who look up to him. He might as well be Jesus H. Christ!!

    Jodi Bassett from a Hummingbirds Guide to CFS had dealings with patient X, thought his story was credible at one time when he was looking for money and is now saying that he never had CFS and has distanced herself from him.

    Patient X and his doctor are setting medical science back to the dark ages and doing a disservice to those who indeed suffer from CFS. He actually uses muscle testing to decide which medications to use. If it were not so ridiculous, it would be funny.

    This is what I find so sad. People with our DD getting their hopes up because we can so easily become desperate.


    ETA This post may not be here by tomorrow and that is okay as I would probably delete it if I were a moderator, LOL!!

    I will not give up thinking a cure is possible but I think we are not only decades away from that but also it will be by mainstream medicine.

    [This Message was Edited on 10/01/2009]
    [This Message was Edited on 10/02/2009]
  4. Slayadragon

    Slayadragon New Member

    All Weather Rider, I'd like to know about Dr. Boulden's story. Is there anywhere we can read about it?

    NoFool, what is an SBM doctor? I seem not to know that abbreviation.

    I'm not the arbiter of whether stories are legitimate.

    I just put down the facts as I understand them to have been described by individuals who have attempted to make a strong case that a) they have/had CFS and b) are recovered.

    Everybody certainly should make their own judgments about each case, as well as others that we may encounter.

    That's our right and our responsibility.
    [This Message was Edited on 10/01/2009]
  5. gapsych

    gapsych New Member

    homeopathy is logical?

    muscle testing is logical?

    neural therapy is logical?

    I am only talking about patient X. I have no idea about other stories.

    Other than revealing the three treatments there is not a lot of information and yes they are setting back medical science.

    I guess it is okay to give a positive opinion about alternative treatment but not it you go by science based evidence.

    I did not direct this at slayadragon but the stories cited. Patient X's story I know about. So I responded to that.

    I think I did answer in the "spirit of the question." This post started with stating the following were cured and asked if there a pattern. To get that information, you have to make sure the premise is correct.

    Read my response again. It is logical.

    This will all come out in time.

    I stand by my statements and will not debate this. You know where I stand.

    ETA Slayadragon asked a very interesting question about a very interesting topic. She also stated:

    "Again, further thoughts are welcome.
    If I have any details of these case studies wrong, please let me know that too."

    [This Message was Edited on 10/01/2009]
  6. Slayadragon

    Slayadragon New Member

    I certainly am not going to take sides in this argument! Hopefully it doesn't distract folks from the point of the thread.

    I'd really like to know if there are more case studies of people who seem to have have gotten truly well that we can take a look at.

    As a general point of discussion, I do think that a person can be fooled without being a fool.

    Whether I have been fooled by any of these people's claims, I don't know.

    I only can vouch for my own story.

    I don't think I'm fooling myself, but I guess you never know.

    [This Message was Edited on 10/01/2009]
  7. gapsych

    gapsych New Member

    Slay, I did not mean that you were fooled but used you in the plural.I know it sounded like that since it was the first sentence after your name in the title.

    I have gone back and edited the first sentence to reflect what I meant.

    Nofool, did you know there is a site called Science Based Medicine?


    ETA I ended up deleting the first sentence because the words just would not come out right. I'm very tired right now. While I did indeed fixate on patient x's story, I find these stories psychologically speaking, very interesting.
    [This Message was Edited on 10/02/2009]
  8. jenbooks13

    jenbooks13 New Member

    Gapsych, please explain what Montaigner has done here:

    That's just an abstract but should be enough for you. If you like I will try to get the full article. Here is the abstract:

    Electromagnetic signals are produced by aqueous nanostructures derived from bacterial DNA sequences
    Revue Interdisciplinary Sciences: Computational Life Sciences
    Éditeur International Association of Scientists in the Interdisciplinary Areas, co-published with Springer-Verlag GmbH
    ISSN 1913-2751 (Print) 1867-1462 (Online)
    Numéro Volume 1, Number 2 / juin 2009
    DOI 10.1007/s12539-009-0036-7
    Pages 81-90
    Subject Collection Biomedical and Life Sciences
    SpringerLink Date jeudi 5 mars 2009
    PDF (797,6 KB)Free PreviewFree Preview

    Abstract A novel property of DNA is described: the capacity of some bacterial DNA sequences to induce electromagnetic waves at high aqueous dilutions. It appears to be a resonance phenomenon triggered by the ambient electromagnetic background of very low frequency waves. The genomic DNA of most pathogenic bacteria contains sequences which are able to generate such signals. This opens the way to the development of highly sensitive detection system for chronic bacterial infections in human and animal diseases.

    Please explain what is going on here:

    1: Evid Based Complement Alternat Med. 2009 Sep 14. [Epub ahead of print]Click here to read Links
    Homeopathic Doses of Gelsemium sempervirens Improve the Behavior of Mice in Response to Novel Environments.
    Bellavite P, Magnani P, Zanolin E, Conforti A.

    Dipartimento di Scienze Morfologico-Biomediche, Università di Verona, Piazza L.A. Scuro 10, 37134 Verona, Italy.

    Gelsemium sempervirens is used in homeopathy for treating patients with anxiety related symptoms, however there have been few experimental studies evaluating its pharmacological activity. We have investigated the effects of homeopathic doses of G. sempervirens on mice, using validated behavioral models. Centesimal (CH) dilutions/dynamizations of G. sempervirens, the reference drug diazepam (1 mg/kg body weight) or a placebo (solvent vehicle) were intraperitoneally delivered to groups of mice of CD1 strain during 8 days, then the effects were assessed by the Light-Dark (LD) choice test and by the Open-Field (OF) exploration test, in a fully blind manner. In the LD test, the mean time spent in the illuminated area by control and placebo-treated animals was 15.98%, for mice treated with diazepam it increased to 19.91% (P = 0.047), while with G. sempervirens 5 CH it was 18.11% (P = 0.341, non-significant). The number of transitions between the two compartments increased with diazepam from 6.19 to 9.64 (P < 0.001) but not with G. Sempervirens. In the OF test, G. sempervirens 5 CH significantly increased the time spent and the distance traveled in the central zone (P = 0.009 and P = 0.003, respectively), while diazepam had no effect on these OF test parameters. In a subsequent series of experiments, G. sempervirens 7 and 30 CH also significantly improved the behavioral responses of mice in the OF test (P < 0.01 for all tested variables). Neither dilutions of G. sempervirens affected the total distance traveled, indicating that the behavioral effect was not due to unspecific changes in locomotor activity. In conclusion, homeopathic doses of G. sempervirens influence the emotional responses of mice to novel environments, suggesting an improvement in exploratory behavior and a diminution of thigmotaxis or neophobia.

    PMID: 19752165 [PubMed - as supplied by publisher

    Those two should suffice to get you asking questions though there are many other very interesting studies.

    Also, why focus on one person out of eight stories?

    I personally disagree that mold is such a big player but I do believe it's a player, as an allergen and immunosuppressant and in some cases with mycotoxins, in various cases. CFS is a description of symptoms and there are various causes.

    [This Message was Edited on 10/02/2009]
  9. gapsych

    gapsych New Member

    Thank you for supplying the abstracts. I have done a lot of research.

    I am sure that our body gives off electrical impulses all of the time but that does not mean we can make a leap in reasoning that this proves homeopathy works. Does it give credence to energy medicine? No. We don't even know how the two are related.

    As for the second the source explains it all. I don't know if this study would hold up to peer review. Of the few studies that have shown a positive outcome, none have fared well under scientific scrutiny to be reliable or valid.

    However, there are numerous scientific studies that have been peer reviewed that show homeopathy is about as effective as chance.

    I am always questioning both scientific and alternative viewpoints. If something is proven to work, it is no longer considered an alternative treatment.

    Can science prove everything? No, there will always be unanswered questions or issues that are too complicated at this point in time to be proven either way.

    However, homeopathy has been proven not to work and physically is not possible.


    ETA Animal studies do not necessarily translate to humans. The same with cellular studies. Draino would kill cancer cells but obviously could not be used as a treatment.

    [This Message was Edited on 10/02/2009]
  10. richvank

    richvank New Member

    Hi, Slaya.

    I think you could add "Sue T." to your list. She has reported being out dancing and lifting weights now for several months. That sounds pretty healthy to me. You can track her case by her posts to the Experimental and the cfs_yasko lists over the past few years.

    Catseye on this board is another person who has reported doing pretty well.

    lbconstable on this board is another. She has reported being able to do heavy farm work.

    On the Nathan clinical study, there were two women who were able to go back to full-time work.

    My impression is that the people who have gotten truly well have dealt with more than one aspect of their illness. I think you have a good idea about trying to document the recovered cases. I tend to lose track of them, focusing on the ones who are still ill, but there really have been people who have gotten well. Some of them email me from time to time.

    Best regards,


  11. Slayadragon

    Slayadragon New Member

    Puddleglum, thanks for your comment. A lot of times I get sloppy and state "mold" rather than "mold toxins."

    Unfortunately, some types of molds make poisons. Stachybotrys or "black mold" is the best-known and possibly most damaging of these.

    I don't try to avoid most molds at all. I don't even have mold allergies.

    I just try to avoid the poisons made by stachybotrys and other types of toxic mold.

    This poisonous mold grows mostly in buildings. If I stay out of buildings that have this mold growing in them, I feel much better.

    Some places, especially cities where a lot of buildings have toxic mold growing in them, also have toxic mold in the outside air.

    I thus usually feel better when I am away from cities. More remote areas have just as much "regular mold" in the air as cities do, but most don't have as much of the poisonous mold.

    I didn't know there was such a thing as poisonous mold until about two years ago. Not many people do.

    But not knowing that some mold makes poisons is like not knowing that some snakes make poisons.

    Some people like snakes that aren't poisonous. Other people don't like snakes even if they're not poisonous.

    But regardless of whether you like regular snakes, it's important to know that some snakes are poisonous! If we don't know that poisonous snakes are out there, we're a lot more likely to be harmed by them.

    Here on Wikipedia is a brief description of stachbotrys, the most famous of toxic molds:

    The article states that:

    >Exposure to the mycotoxins present in Stachybotrys chartarum or Stachybotrys atra can have a wide range of effects. Depending on the length of exposure and volume of spores inhaled or ingested, symptoms can manifest as chronic fatigue or headaches, fever, irritation to the eyes, mucous membranes of the mouth, nose and throat, sneezing, rashes, and chronic coughing. In severe cases of exposure or cases exacerbated by allergic reaction, symptoms can be extreme including nausea, vomiting, uncontrollable bowel movements, and bleeding in the lungs and nose.[4]

    Rich, thanks for the suggestions of more people who've gotten well. I definitely want to look into those case studies.

    Laurie Constable is a particularly good reminder. I had forgotten about her.

    Best, Lisa
  12. jenbooks13

    jenbooks13 New Member

    You're wrong, of course. You can say you're not convinced by the evidence yet, you have every right (took science 10 years to be convinced by Barry Marshall that h. pylori caused ulcers). But of course it's possible. It's possible for a particle to be a wave at the same time. It's possible for molecules measured in angstroms to affect brain function. There is abundant evidence that many things are possible. I'm not trying to convince you, but your mind is just a little too closed and you don't actually understand what you're negating.
  13. jenbooks13

    jenbooks13 New Member

    "This poisonous mold grows mostly in buildings. If I stay out of buildings that have this mold growing in them, I feel much better.

    Some places, especially cities where a lot of buildings have toxic mold growing in them, also have toxic mold in the outside air."

    That is your subjective impression but there is little evidence to document that (that stachy grows mostly in buildings, and in air of cities with lots of stachy). That does not sound feasible or real to me and for instance I know you think Santa Fe is a sick-mold city whereas I think it's pretty healthy, given the altitude and mountains.

    In addition, having mold allergies can be significant. It can also be immunosuppressive, there's pretty abundant pubmed evidence to that. That has little to do with toxins. I'm one of those. However I will say that even on the most humid days in NY I don't seem to react to molds outside whereas I can feel yucky inside (80-100% humidity). I should add I just saw a study about urban buildings and how most have problems (with mice or leaks etc). So I assume NY would be a stachy disaster with all these prewars. But outside it seems fine.
    [This Message was Edited on 10/02/2009]
  14. gapsych

    gapsych New Member

    What does Barry Marshall have to do with homeopathy? Just because he was proven right has nothing to do with homeopathy.

    Marshall's theory at was scientific plausible. That is very different circumstances.

    The study about the cells probably has merit. But once again, it does not prove homeopathy's link to this.

    My not believing homeopathy has little to do with not convinced by the evidence as there is no evidence. The evidence shows it does not work.

    Do you know about the laws of physics, science, and how the body works?

    I think you are rushing to judgement about me being closed mine. Do you think I just pick my opinions out of the air? Nothing could be further from the truth. I wish life were as simple as taking water and it would cure ills. It is wishful thinking.

    Calling people "closed minded" is a diversion tactic often used by the alties to obscure the real topic.

    I don't know you but it sounds like you just want to believe this, so only look at "evidence" to prove this? Isn't that being closed minded?

    You certainly have a right to your beliefs. But don't call is science.

    We have different perspectives and "never the twain shall meet."


    ETA If someone can prove homeopathy you can make a quick million dollars. Steve Novella as well as the great Randi have offered these rewards. So far, no one has taken this challenge.

    Let's get back to the original topic.

    [This Message was Edited on 10/02/2009]
  15. sorekitty

    sorekitty New Member

    I feel like I'm living in a crazy world. Can i buy a light saber that beeps when mold toxins are around? Then what do I do? How can you possibly avoid all this? I can't just up and move to a tent. I have a family with a little boy? Sorry to sound so upset. I just feel like trying to find my own cure looks like an impossible task.

    Nofool-How can I find an SMB dr? I can't even find a developmental pediatrician in my area for my son!!!!!!! Then of course they would have to take our insurance.

    Sorry, for the downer post. I am so done with trying to heal myself. I just don't even go through the motions anymore.

    Blah blah blah

    ETA I am not angry with anyone here. Love you all. Just fed up with illness.[This Message was Edited on 10/02/2009]
  16. spacee

    spacee Member

    When I became ill, four of us did within a few months time.
    Typically to the Lake Tahoe support group. One of us recovered and is recovered for over 20 years. One greatly improved to the point of working. Other two remain disabled. One seems to have passed it on to her son who is grown and married.

    We all have lived in different houses over the years and in different states.

    To me, we caught something and perhaps had a genetic thing going on.

  17. CortJ

    CortJ Member

    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 Tainan 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.

    I've seeing Mike in the flesh; aside from some lingering neurological issues he's able to engage in vigorous physical exercise. His doctor however does not believe he's well and he continues treatment.
  18. Slayadragon

    Slayadragon New Member

    Sore Kitty, that light saber is a great idea. And I certainly hear you with regard to your frustration. If I could solve the problems you mention, lots of people would be able to give addressing toxic mold a try at a level that, I believe, is necessary to resolve these problems. Then we could see if mold avoidance really works.

    Insofar as people want to do it the hard way (e.g. my way), I'm willing to give them help though. And the more skeptical the sufferer the better, insofar as s/he has documented "real CFS." (NoFool, this means you! And I'm serious about it too.) The mold effect, in my experience, is dramatic enough that it will overcome all doubts. The problem is, you've got to do it right. And doing it right is _really_ hard!

    Spacee, I wasn't aware that you were part of the Lake Tahoe group. When did you get sick?

    I was in Lake Tahoe recently and encountered a huge amount of a mold toxin that was wholly devastating to me. A 6-hour exposure of this outdoor toxic mold caused me to become more sick than I ever was during my 12-year illness. This acute sickness lasted for over two weeks, and the possessions that were exposed to this stuff caused me problems for a lot longer than that.

    Apparently this super-bad mold first appeared in Lake Tahoe in 1984, just prior to the Incline Village outbreak. Insofar as a lot of this particularly bad type/strain of toxic mold has appeared in an area at a particular time and had a particularly strong influence on a set group of people (perhaps those primed for illness through previous exposures to ordinary toxic mold or other toxins and with particular genetics?), it provides a good explanation for why an epidemic would have occurred there.

    My mold reactivity has gone down a lot, and I do think that I'm headed toward living a pretty normal life. But if I were forced to live in Lake Tahoe (even with my reasonably expert mold avoidance skills), I'd be bedridden and calling for Dr. Kevorkian within a week. This stuff is horrifyingly awful.

    Other places where this sort of particularly bad mold has been reported by people who have been sensitized to toxic mold include the San Francisco Bay Area and parts of Texas. Those are places where CFS clusters have been reported, where CFS support groups are strong, and where sufferers seem to demonstrate particularly severe forms of CFS.

    There certainly is a viral component to this illness. I believe it acts with the mold in a synergistic fashion, though exactly how this works is still unclear to me. The extent to which antivirals recently have caused the extent to which mold bothers me to go down suggests that there's a complex interaction going on though.

    I don't expect people to take what I'm saying here based on my word. The idea that there's a "supermold" out there is a concept that is both novel and scary, and general skepticism about anything that's not proven is always appropriate. But insofar as I'm right (and after my experience in Lake Tahoe I myself am _sure_ that I am right), this certainly explains why an outbreak happened in that area. It's a far more convincing explanation than a pathogen alone, which would spread to other areas pretty fast and consistently rather than working in clusters.

    With regard to the Lake Tahoe person who recovered: how long was s/he sick? did s/he move away from the area? when did that move take place? where did s/he move to?

    I'm actually really excited to find people from Lake Tahoe and would like to hear more about what you know.

    Cort, thanks much for the list of other people who have recovered. I'm looking forward to digging more into their cases. Do you have any ideas with regard to how I might best contact them?

    Best, Lisa
    [This Message was Edited on 10/02/2009]
  19. Slayadragon

    Slayadragon New Member

    Caledonia, thanks for the comment that some of these clusters are confined to particular buildings.

    A lot of these buildings were found to have toxic mold problems, but in many cases not problems that were thought to be severe enough to have made people really sick.

    In some cases, the mold is buried so well that it's not easily found. And stachy in particular rarely comes up on air tests.

    But also, insofar as there is a "super-bad" mold out there, not much of it would needed to create a big effect. A little patch of it likely wouldn't seem a big deal to mold remediators, but might still create more harm than a heck of a lot of ordinary stachybotrys or other toxic molds.

    It seems that this mold is poisonous enough that otherwise healthy people will demonstrate symptoms if exposed to enough of it. Really bad headaches seem a common reaction, for example.

    But most people seem to be able to recover from transitory exposures without obvious permanent harm. That's the case with large amounts of ordinary stachy, and (based on a limited number of observations) it's the case with limited amounts of this super-bad mold too.

    Unfortunately, for whatever reasons, some of us don't recover as easily.

    NoFool, I haven't heard you talk too much about your health. But I don't read this board religiously either.

    I remain curious about Dr. Goldstein's treatments, especially since Lamictal has been a really good drug for me. Did you experience a lot of improvements as a result of seeing him?

    By the way, my doctor reported to me a few weeks ago that Lamictal has antiviral properties. I don't know how much that aspect of the drug has helped me, but I'm happy to hear it.

    Stachybotrys indeed is a very heavy spore, falling to the ground almost immediately after being released into the air.

    Unfortunately, that doesn't mean it's not harmful. What happens then is that the spores fragment and attach themselves to dust particles. They then are easily blown around through vent systems, vacuuming, cleaning and normal air circulation.

    The poison from the dust and the spore fragments then contaminates all the surfaces that they touch. The poison appears to be quite sticky and not very easily washed off. The poison then is slowly re-released into the air. Unlike the spores, the poisons are light and thus remain easily airborne. They thus affect us even when the spores and spore pieces are nowhere to be found.

    It seems that this is all by nature's design. Stachy can grow on surfaces that its own poison has coated, whereas most ordinary non-toxic mold cannot grow on such surfaces. After all the surfaces are coated with the poison, stachy can grow without competition. Many buildings (including my own house) with big stachy problems have almost no other molds present.

    All of this is why (including in my own house) stachy usually doesn't show up on air tests. The spores stay airborne for very short periods of time and then fragment into pieces that aren't identifiable on the pictures even when they are in the air. In addition, stachy releases its spores in waves. Tests in some super-bad buildings have shown no stachy spores at all in the air for 23 3/4 hours a day and massive amounts during the remaining 15 minutes.

    Stachy hardly every grows out in the open. It hides in drywall or (as in my house) behind fake paneling. When it is visible, it looks much more like smears of dirt rather than what we think of as mold.

    It's not an odorless mold, but oftentimes it's enclosed enough in walls that the smell is not readily noticeable. After I found out about my house, I asked everyone I knew if the house had smelled like mold. They all said no. I don't think they were just being polite.

    It's like this stuff is designed to be able to grow without our finding it. No wonder so few people believe it can be a problem!
  20. astroherb

    astroherb New Member

    I believe the following sentence from one of the previous posts is the key:

    "My impression is that the people who have gotten truly well have dealt with more than one aspect of their illness."

    These illnesses started out being diagnosed as "syndromes." One definition of a syndrome is a collection of symptoms. Too often, doctors just want to treat the symptoms. Give Lyrica to a patient with FM and some of the symptoms go away. It is valuable to treat the symptoms to bring relief to the patient, but the patient has not been healed. Hopefully though, they feel better.

    To find and deal with the cause of the symptoms takes much more effort and thought.

    In my own case, symptomatic relief was rather sketchy. Cymbalta and Skelaxin were nightmares. Flexeril worked a little for sleep and relief of night time pain. That's all.

    True healing has started to happen through finding and addressing my underlying issues: high gluten intorerance, adrenal exhaustion, high gut bacteria and the lack of hydrochloric acid and digestive enzymes. Less than 3 months into the treatment plan I have much increased energy and just plain feel better. My doctor has said it will take a year to a year and one-half to resolve all of the issues. It took years for my present sorry state to come about, so that is okay with me.

    The underlying issues are probably different for each person. That is why this disease is so difficult to treat. You can't take a "cookie cutter" approach to it.

    Meanwhile, I am feeling very hopeful. My fingernails are even starting to grow in stronger and healthier. This is not such a big deal in the overall scheme of things. But it is physical proof that something positve is going on in my body.

    [This Message was Edited on 10/03/2009]