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
