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Do CFS Patients Ever Get TRULY Well?

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

  1. acer2000

    acer2000 Senior Member

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    I'm not sure what to think of what Dr. Lerner says. On one hand there clearly are people who took Valcyte for 6 months and were able to go off and are well. Seems to be people who saw Dr. Montoya and maybe a percentage of people who saw Dr. Lerner. But I saw Dr. Lerner for a while (and his treatment didn't help me) and he basically said 80% of people need to keep taking his antiviral prescriptions for what appeared to be indefinately or else they'd loose the gains they made. And only a portion of the people who took the antivirals actually got to a point where they'd consider themselves without symptoms. Most went from a 2 to 6 or 7 on his scale if I recall correctly - varying levels of improvement. So I'm not sure what that represents.

    I think he said he took Valtrex for something like 8 years himself (not quoting, but it was a long time). Not sure if the people who he treats really "get well" or just have thier symptoms reduced to a tolerable level so long as they stay on the antivirals. Perhaps its also a diagnostic issue. Dr. Lerner is a very experienced ID doc, but maybe some of the people who see him appear to have chronic herpes viral infections so he treats them, but that isn't the main cause of their illness, thus they never really get 100% better. Its the old - if you have a hammer... everything looks like a nail.

    Perhaps if Montoya's study every gets published (whats the deal with that BTW??? been a long time) it will give more details on who actually will respond and the treatment can be more narrowly applied.
  2. Stormyskye

    Stormyskye

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    Hello

    I have a couple of corrections for you Lisa. I got sick about 30 years ago, about age 20. But may well have been ill as a child too. I don't specifically avoid the cities because of mold although I'm aware of what I'm avoiding now, that "bad" un-named thing and I'm careful. I avoid cities because I don't like them but I just came back from a 3 week trip with my sisters that included a lot of cities, including DC. I did really well on the trip, by the way. We had a great time. The only really "bad" place in the bunch was Mammoth Cave. Go figure. I won't be visiting any caves in the future.

    I can't remember if there are any other things that need correcting.

    I wouldn't call myself 100% healthy. A bout with pleurisy a few years ago has left my system weakened a bit. PVC (pre ventricular contractions) plague me at times although that isn't a CFS symptom but it does seem to be a mold toxin exposure symptom. I can't specifically say what is causing it for me. I still do not have the stamina of a "normal" person, but then, I never did, even as a child. So perhaps this is my best. I'm not complaining. It's pretty good.
  3. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    I once onsidered myself recovered

    I considered myself cured for a number of years. Truthfully I was bouncing around between 75 and 95%. I still had some MCS but it was mild to moderate during those years. I was able to work, to travel and even exercise heavily though my strength and stamina was not quite up to that of my peers (but it never had been). I was doing nothing for treatment during the time I was getting better. The only thing I did was move to a new place a few years before I got better and try to avoid things that obviously made me ill. I would have mini crashes during those years but a day or two of rest brought me back.

    My initial onset was with a mono-like illness with Fibro and MCS following shortly thereafter. After those good years I slowly declined and now have had five years of total hell. It is impossible to learn much from individual cases unless a repeating pattern is revealed. Each of us may attribute a recovery to a particular factor or treatment but can we always be so sure?

    Peace,
    S
  4. Stormyskye

    Stormyskye

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    Hi there

    I don't think we really can be sure what caused a remission. Or if that remission is going to last forever. I think we can be reasonably sure of what helped us but there are so many factors involved that it can rarely be pinpointed to one thing. A bunch of them, maybe.

    I don't use the word "cured" much. Remission seems more accurate. I'm hopeful but not all that confident that things will stay as good as they are. To many people crash and burn within 5 years of thinking they are well. And I don't truly understand the connecting susceptability to mold toxins- why some can handle it and others can't. I'm sensitive to the bad stuff but I'm not living with it. I just run into it or it wafts in from time to time.

    There are still some things not right in my system. I'm cold and winter is coming. Dang it. Is it CFS related or something else? I just don't know.
  5. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Mold Triggering


    AFA toxic mold goes, Dr Shoemaker's work indicates that about 24% of the general population has genetics that he has strongly correlated to biotoxin susceptibility. About 2% have genetics that, to paraphrase, will confer a refractory chronic fatiguing illness. Individuals with other genetics usually need much more massive exposures to have any long term illness.

    Something that Dr Shoemaker has worked on is what exactly triggers that susceptibility, what makes a person with susceptibility genes go from being able to be around mold to being made deathly ill from mold exposure.

    There is always the issue of the particular exposure, the amount and particular type of toxins involved. Depending on the particular mold and the conditions, there may or may not be a lot of toxin production. This would put things into the realm of chance.

    What Dr Shoemaker found however, was evidence that a triggering event or condition that caused high cytokine production was likely the key to turning on the biotoxin susceptibility. Thus if someone had an active infection(s) or a major toxic exposure that had triggered a "cytokine storm" during or immediately prior to a biotoxin exposure, their susceptibility would be "unveiled" resulting in active biotoxin related illness. Massive exposure may override this need for a trigger since it can cause the "cytokine storm" all by itself.

    I do believe that Dr Shoemaker is on to something and he has published a number of papers in addition to his books, though AFAIK nothing on the issue of triggering of the susceptibility. His treatments did not cure me or lead to complete remission but they did get me off the floor and onto my feet. I also think they saved a lot of my brain even though I am quite damaged.

    Peace,
    S
  6. Stormyskye

    Stormyskye

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    Hi

    Complicated mess, isn't it? One more part of the mystery puzzle. In time. We'll figure it all out in time.
  7. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Hi All,

    Sorry to have neglected this thread.....I didn’t realize so many people had contributed to it since I last checked!


    Dreambirdie wrote:

    >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."

    
Do you know if this guy still lives in his car? Or what his lifestyle is like now?



    Mike Dessin wrote:

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

    I think this is the case too.

    And the more I dig, the more it seems that pathogens also play a role.

    Candida seems to make a poison similar to that of toxic mold, and thus to exacerbate what the mold is doing.
    
Viruses, I feel increasingly sure, do something to prevent our bodies from keeping toxic mold (and maybe other toxins) out. I’m getting the feeling recently that no matter how much I detoxify, it’s not going to do any good if the toxins keep flowing in. And I’m not sure those particular viruses ever wholly go away, at least on their own.

    Other viruses seem like they screw around with reduced glutathione usage. But those do seem to go into hiding with detox/mold avoidance.

    Lyme seems to have an irritant effect that makes mold toxicity more damaging.

    And I’m becoming convinced that the only way to truly recover cognitive function is by attacking the herpes family viruses. I’ve heard of few people who haven’t taken Valcyte recover 100% on that measure.

    The really interesting thing to me about your case is that you’ve managed to make a recovery without doing extreme mold avoidance or taking antivirals.

    How’s your cognitive functioning doing?

How are you doing now that winter’s here? (Outside mold levels are higher in winter, so looking at how you’re doing over the next couple of months might give more information about how much of an issue mold still is for you....if indeed it was an issue in the past).

    Thanks for your post.


    S5044726 wrote:

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

    I used to be really sensitive to corn back when I still was getting a lot of external mold exposures (stachybotrys).

    The interesting thing at the time was that it didn’t come up on any food allergy tests. When I did Arthur Coca’s “pulse test” (an excellent test that is way underused), it usually came up as really important though. And corn did generally make me really depressed.

    Fresh corn didn’t seem nearly as much of a problem though. And even dried corn only sometimes had an effect.

    Now that I understand that it was the fungus on the corn (aspergillis) that made a difference, that makes perfect sense. It’s mostly present on dried corn, and on it most (but not all) of the time.

    The interesting thing is that once I started to avoid “the stuff in the air that makes me sick” (which I think is almost solely stachy, either on its own or mutated to grow on chemicals), my sensitivity to corn and all other foods went away entirely. So did all my sensitivities to chemicals.
    
Those things certainly made a big difference earlier in my illness though.


    Asus389 wrote:

    >I'm not sure what to think of what Dr. Lerner says. On one hand there clearly are people who took Valcyte for 6 months and were able to go off and are well. Seems to be people who saw Dr. Montoya and maybe a percentage of people who saw Dr. Lerner. But I saw Dr. Lerner for a while (and his treatment didn't help me) and he basically said 80% of people need to keep taking his antiviral prescriptions for what appeared to be indefinitely or else they'd loose the gains they made.

    Gary/gasolo on ProHealth now tells me that he still has some fatigue and occasional post-exertional malaise but that his cognition is 100% of pre-illness.

    It really is hard to get totally well from this illness. If you dig down, it seems it never really goes away. And that being the case, it makes me worry that it always could recur.

    Of course, getting to “almost well” and staying there is a real accomplishment!


    Stormy wrote:

    >I have a couple of corrections for you Lisa.

    Nice to hear from you, Stormy!

    I’ve actually been thinking of writing you since having had my reactivity go down so much on the Famvir. Dr. Guyer stated he’s seen a number of mold patients make improvements especially by treating yeast and viruses, and perhaps to a certain extent to Lyme as well.

    This reminded me of the comments you made a while back on another board, when you said that you thought that a good coping mechanism for the “ick in the air” that seemed like it might be blowing from Texas was to stoke up the immune system herbs.

    I thought at the time that it was because the “ick” (mold?) was causing your infections to flare, and that the herbs kept them under control (thus preventing their direct “downstream” effects from recurring).

    But now I think that maybe what you were doing was actually lowering your reactivity a bit to protect yourself from the mold. Which is FAR more important than just preventing short-term pathogen flares, I think. Once the mold gets in, it’s really hard to get out. Especially, I think, that really bad “supermold” from Texas (which I myself ran into in Lake Tahoe and Telluride over the summer). Those headaches that you described are certainly a symptom of it, in my experience.

    So as seems very often to be the case, your intuition seems to me to be right on target.

    When I was at Mojave National Park, I tried to go on a tour of a cave. I got upregulated quite a lot standing about 10 feet from the opening, so I had to bail.

    I thought this was peculiar at the time, since I didn’t know why there would be enough cellulose in the cave for stachy to eat. But it certainly was my stachy response. So I’m not planning to go to any caves in the near future either.

    How is your cognition compared to where you were before you got sick?


    Lost in the Desert wrote:

    >After those good years I slowly declined and now have had five years of total hell. It is impossible to learn much from individual cases unless a repeating pattern is revealed. Each of us may attribute a recovery to a particular factor or treatment but can we always be so sure?

    Did you do anything differently prior to your decline?

Where in the desert are you living?


    >Something that Dr Shoemaker has worked on is what exactly triggers that susceptibility, what makes a person with susceptibility genes go from being able to be around mold to being made deathly ill from mold exposure.

    >I do believe that Dr Shoemaker is on to something and he has published a number of papers in addition to his books, though AFAIK nothing on the issue of triggering of the susceptibility.


    Did he ever make a guess with regard to what triggers the susceptibility? What do you think it is?

    I’m now pretty sure it’s a viral infection. Erik Johnson (ErikMoldWarrior) said that his own mold reactivity got quantum leaps worse after getting the “killer flu.” And Famvir lowered my own reactivity a whole lot. Maybe Valcyte will bring them under control....I’m keeping my fingers crossed.

    I also think that “mold reactivity” for CFS sufferers means that mold gets in more easily.
    
It’s my belief that neither Lyme nor candida increases mold reactivity. They seem to me more like they serve as irritants, making the effects of the mold worse.

    It would be interesting to hear if this is consistent with your own intuitive experience.


    Best, Lisa
  8. Dreambirdie

    Dreambirdie work in progress

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    "Dreambirdie wrote:

    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."

    
Do you know if this guy still lives in his car? Or what his lifestyle is like now?"


    He no longer lives in his car. He travels extensively all around the world, and is doing pretty well. He can even stay in hotels if he needs to, which is a HUGE change. He says his health is not "perfect" but he is now free to have a life.
  9. jenbooks

    jenbooks Guest

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    Quick thoughts: One, it's hard to distinguis between mold allergy which is immunosuppressive and mycotoxins that are generally bad. We are staying at a very beautiful pastoral place 30 minutes outside Atlanta. It's a sustainable new urbanism community on 1000 acres and the b&b rooms are beautiful and nontoxic. The last two days was nonstop rain. I breathe better (this is nestled in 40,000 acres of oak and pine) and sleep well and I'm sure, given theclast two days of nonstop rain that there is natural mold outdoors. I walked in the muddy mulchy woods. It all was fine. For me, natural environments are fine including natural levels of mold I guess.

    However we had a total disaster staying at a mold infested b&b in the city Friday night. It is an older craftsman style home and infested with mold. I got so sick there (itching all over and coughing incessantly and also very depressed mood) we piled our stuff in the car at 3 am and drove back here and 'slept' in the car (I didn't sleep) until staff arrived at nine and opened a room for us. I took a long blissful nap not even caring I was sleeping under bounce-scented linens. That's because my wool blankets and much of our clothing now reeked of mold and I've been handwashing some stuff and my boyfriend is taking all his stuff to the laundromat tomorrow. I have rarely been in such a mold toxic house. Yet the proprietor is perfectly healthy.

    I have mold allergy and mycotoxin sensitivity. The latter is probably a result of Lyme. The former is genetic. Even so, outdoors the natural levels dispersed in air don't bother me. Thus I must say that building materials with mold are unnatural. The homes are enclosed and there is no natural dispersal. For me, mold indoors is the problem.

    That makes sense as how could one be sick from a healthy natural environment in which we evolved?

    Finally, there is simply not a one-fits-all theory, Lisa. You generate hypotheses to fit a heterogenous mx of people into. I didn't Lise cognitive function; maybe because of hyperbaric (hypoxia in tissues generally is a consequence of these illnesses). Mold and viruses and borrelia and babesia and metal poisoning and genetics will all play different roles for each person. Gut problems are important too (I have celiac and have gotten hidden gluten hits in food on this trip that have flared symptoms I haven't had in years as I eat so healthy and careful at home).

    Back to sleep (I hope).
  10. Wayne

    Wayne Senior Member

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    Acyclovyr & Cognitive Function

    Hi Lisa, nice to see you back here posting. Just thought I'd mention that I'm currently visiting my brother in the woods of AR. He has a prescription for Acyclovir and I thought I'd try it to see what it might do for me (given I probably have a few herpes viruses my body is dealing with).

    Anyway, I took one capsule and the next day felt like I had a little more energy and had a noticeable difference in my cognitive function. In fact, I noticed it over the next several days. I didn't take any more capsules during these days, but I did feel the drug staying in my body during this time period.

    Anyway, based on this anecdotal experience, I suspect you're probably correct about herpes viruses negatively affecting cognitive function. BTW, I tried another capsule about a week later and results were less significant.

    Hope you're doing well.

    Regards, Wayne
  11. Relapse after 100% recovery, (was it isoprinosine?)

    I'm one of those who was 100% well. I was at the Dr Bell's 30% ill for 10years after a bad flu virus. I started to improve and then started taking isoprinosine (immune modulator/antiviral). I took it for 16 months before I knew I was well.( How can one know if this was the reason - as I was following all the guidelines of the experts) I was then able to build up my strength to gym strength, nothing seemed to give me post exertion malaise - which was always one of my biggest problems (lasting for months rather than days). I reduced my isoprinosine to 2 per day after 3 years ( still at !00%-) and disastrously after another 2 years I have had a bad relapse. I was stressed in Feb 09 and ignored the old familiar symptoms as I thought I was 100% over it, but back to the old CFS symptoms and bed/housebound. I have gone back on the isoprinosine 6 per day now for 8 months. I'm a bit better but not far above the 30%. Still bad post exercise malaise after doing a tiny thing. Isoprinosine is a drug that was used/developed early on in HIV protocols and perhaps does have retrovirus properties. Dr's Klimas etc say it can take 6 - 12 months to work.

    My comment is that we don't know what works but with this retroviral XMRV I am thinking perhaps the isoprinosine did work and have fingers crossed that after 12 - 16 months I will return to 100%.
  12. shrewsbury

    shrewsbury member

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    Hi Frankie Dene - thanks for posting this. I so love hearing about anyone who's gotten even a little bit better for some time, let alone 100% for an extended period.

    I dream of being able to exrecise again. Oh those endorphins!

    Because we're all "trials of one", and have such a variety of symptoms on top of the shared ones, it is odd that we're never sure if it's what we are doing that is working (or not working), or just time, or............

    How hopeful to hear about isoprinosine (immune modulator/antiviral)! I hadn't heard of it before. It may well be that what is going to work for us will come out of the last 20 years of HIV AIDS research. Since it was developed in the early years, I wonder if its protocol or even composition have been updated.

    What a strong reminder for us to keep on paying attention to stress and the signals for when we are over-doing. 5 years well and then bed-bound again, despite being on a maintenance dose of isoprinosine. What a horror.

    My fingers, knees, elbows and eyes are crossed as well:p

    islandfinn
  13. jenbooks

    jenbooks Guest

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    It may be you need more than monotherapy. Viruses can certainly eventually become resistant. Reducing a therapeutic dose might encourage resistance. Early days of HIV therapy on monotherapies led to resistance and death. If you are treating a retrovirus you have for life monotherapy is a foolish idea, probably. Using several drugs lowers the likelihood of resistance.
  14. Michael Dessin

    Michael Dessin Senior Member

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    Franki Dene

    Frankie, Hang in there, you got better once and you can do it again!!

    Isoprosine is a powerful Immune Modulator, and is a mild anti-viral.

    It's hit and miss, some have had really good success on it and some not.

    One thing I always think about, can we actually get cured? I know from experience we can get functionally better. Be able to work out without PEM and live a normal life. But can we really be cured??

    You will get better!! :D

    Mike
  15. Hysterical Woman

    Hysterical Woman Senior Member

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    Frankie/pulsing?

    Hi Frankie,

    Have you thought about pulsing the isoprinosine?

    Maxine
  16. Christina

    Christina

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    Work is the test

    The lady who was a homemaker before and after CFS doesn't really have the right to say she was "cured."

    I don't know about anyone else -- but cognitive difficulties stop me from doing a full-time white collar job. So anyone with lingering cognitive problems, who's not testing his or her limits by working full time at a mentally challenging job, is not well. We can all live without exercise -- but in most cases, using our brains effectively is the key to making a living, which is my definition of being well.

    And if you're a self-supporting person, you need to work wherever your company tells you to work. I've long known mold was an issue with my CFS -- and was careful about my environment, what I ate. But I couldn't control the building where my company (which vetoed telecommuting) assigned me to work. New carpet did me in.

    So I think these people have learned to manage their health condition -- they're improved, not cured.


    In this week's New York ma
  17. Stormyskye

    Stormyskye

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    Hello everyone

    Lisa, I haven't mastered the reactivity issue yet but it is better. Much improved. The south wind has blown a lot here recently and I haven't had issues. So improvements in the environment to the south or I'm improving with the reactivity issue. I can't say for sure. I expected a lot more issues with traveling for 3 weeks but it didn't happen.

    I don't know what the deal is with the caves. I'm inclined to think it has something to do with the bat fungus issue that's been killing off the bat population. I managed the tour ok although was aware that something was off a bit. It wasn't until late in the night and during the next morning that I became so ill from it. By the following day, all symptoms were gone.

    My cognition is that of a normal person. Pre illness, normal.

    There are herbs that can be used instead of valcyte. Which I used.

    Christina, I didn't say cured. I used the word remission. And my choice of occupations has no bearing on the outcome of treatment. You don't have to have a full time white collar job to mentally and physically challenge yourself in order to assess your level of recovery.

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