Here are some comments by CityChanger, responding to questions by other ME/CFS patients.
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To those that continue to say Lisa has toxic mold and ME, I understand where you're coming from. I used to feel the same way. My first few forays into the desert with Lisa yielded no results. It was maddening to think that someone could go to the desert and be hiking miles within a week. My severe POTS, severe PEM, and every other classic ME symptoms told me this wouldn't work for me.
In fact, it does work. It just didn't work overnight. Now I'm driving long distances, hiking, working 40 hours a week from my computer, and I've really only gotten my feet wet with this. Erik Johnson took 6 months to be able to hike long distances, and I've only been out in the desert for 2 weeks (before this, I did moderate avoidance for a 2-3 months by living in my custom-built trailer in big cities).
The reason why I won't go public is of course, because I know what people will say (the same things they say to Lisa). Lisa is one of the few of us brave enough to press with the truth and attach her full-on identity to it. We should be so lucky that there's at least one person to do the dirty work.
For those that say I don't have ME, I've been verified by the top ME/CFS doctors in the US including Dan Peterson. I have the exercise stress tests and all the classic immunological markers to prove it.
I know this isn't the best place to continue talking about the mold thing, but occasionally I think it's a good idea so that people in position to do this (or do something about this) hear that it can really help someone with classic ME/CFS.
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I prefer not to isolate "mold" as the trigger. I think that our immune systems are overreactive or autoimmune. The Rituximab trials are and will prove as much. Getting in a pristine environment is an exercise to lower the reactivity to biotoxins — in my mind, I think of it as the inflammation-dampening quality of ampligen, or the main quality of Rituximab. It's just non-toxic.
As for your statement that "loads of very sick peoploe who have no mold around them". Can you say with certainty these people are not surrounded by noxious biotoxins. Everyone that has done mold avoidance has said we don't know what is causing this overreactivity. If we knew, we'd be testing it. So how could you say what we don't know we're reacting to, isn't there? That sounds like wishful thinking rather than logic to me.
The biggest mistake with the mold warriors has been to focus on the word "mold." I guess they needed something to describe it with for consistency, even if they didn't know what it was. When people think of mold, they think of visible black stuff. I moved to a house that no one's ever lived in in the middle of the desert and got no physical improvements. When I moved to a trailer constructed with aluminum and foam, that's when I really began improving. So again, I never saw mold in that house, yet I couldn't get better in it.
It's highly inconvenient to think of biotoxins being the cause of our immune overactivation. Because most of us are not in a position to do jack about it. Whether or not that's the main reason for the resistance to this idea, I'm not sure.
The bottom line is I have ME and biotoxin avoidance enabled me to hike for 3 days straight with no PEM.
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My point was that rituximab is harmful but it does give us a pretty clear indication that the presentation of ME (note: I did not say the cause) is autoimmunity/overreactivity. I think it and (part of) ampligen are working on the same mechanisms as biotoxin avoidance.
Within the framework of our understanding of biotoxin avoidance, one explanation for why people get sick when their b-cells come back is that the b-cells that regenerate behave in the same way as the ones that were killed off. This could very well be due to a retrovirus. I don't believe anyone in the biotoxin avoidance group has said we don't believe it may be a retrovirus causing the autoimmunity. In fact, this has been my inclination all along, but it's not my place to voice my speculations.
>So why have you not cured yourself of toxic mold in 30 years if you know why you are sick from a disease that is not ME?
In response, I have had ME for 5 years. I never said I'm not sick from a disease that is not ME. You're saying I don't have ME, as I suspected people would say after I improved from biotoxin avoidance. What's funny is: I've had a huge presence in the ME/CFS community for the last 5 years, and before this no one has ever doubted that I have classic ME/CFS. Again, the doubts now are very predictable because I had the same doubts of Lisa, Erik, Jeri, etc etc.
>The bottom line is your experience is subjective and there is no evidence you had or have ME. How can mold explain the full range of signs and symptoms found in neurological ME?
Of course my experience is subjective. However, when's the last time you've subjectively felt that you could hike 40 minutes 4 days in a row (I just came back from another hike) when you couldn't walk through the supermarket without crashing for the last 4 years? Also, where's your proof that you have neurological ME? Why don't you tell me what your proof is and I'll respond by telling you truthfully whether I have the same.
If you can't offer proof that you have ME (because no one can–I prefer to rely on experts like Dan Peterson that have seen ME patients for the last 20 years that know how to piece together the clinical picture of ME/CFS), then you are in no place to doubt the diagnosis corroborated by Dan, Susan Levine, Enlander, Benjamin Natelson, Staci Stevens, Mark VanNess, David Silver, Huy Hoang, Jonathan Rand….I could go on but that would be gratuitous. Unless you think all of these ME/CFS specialists are wrong.
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Another thing: I very strongly believe that biotoxin avoidance is not a cure. I probably disagree with Lisa and Erik on the role of virii, mainly because a retrovirus fits my profile like a glove. However, until there's adequate treatment for it, this is something that I feel is worthwhile doing. Now that I'm doing better, I feel that that leading a hardcore lifestyle is a small price to pay for not living 24/7 like a ME/CFS patient. As a very sick patient, all I ever had my eyes on was a cure. At a certain point, we just want to feel better. This is why patients take ampligen knowing that it in all likelihood will not cure them, isn't it?
Biotoxin avoidance to the T is a very difficult endeavor. Very few people end up doing it, and I can understand why. It's physically and mentally challenging, and socially because of potentially rending of familial and communal relationships. No doubt, this exercise takes a meaningful sacrifice.
So just so we're clear: no one has said biotoxin avoidance is a cure. No one has said mold warriors avoid because they don't believe in a retrovirus. People just want to feel better (and sometimes significantly better) while we wait for the politics of retroviruses to give the science of retroviruses a real chance.
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Of course we need concrete tests for ME. But in the meantime what do you suggest? That we sit back and not tell people if what works for them, because we might have ME, toxic mold illness, or something else? If everyone waited for a biomarker to come around to start communicating honestly and scientifically to the best of our abilities in the absence of a biomarker, this blog would not exist.
Let me ask you: if you had/have ME, could barely walk the length of your driveway without crashing, hypothetically took a vacation tomorrow to the desert and were able to hike 4 days in a row, what would you do? Would you tell other patients that could benefit? Or would you keep it to yourself because there's no single test to communicate your real disease?
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>Your improvement may have nothing to do with avoiding biotoxins. It may have been the natural course of the disease ME or you don't have ME. We really have no idea as there is no data so you are not actually talking scientifically but stating your opinion.
That is a very predictable hypothesis from someone that has never experienced this. The "natural course of the disease" doesn't happen within 2 months when you've been getting progressively sicker for 5 years.
But anyway, I won't argue semantics with you. The medical and political landscape of ME/CFS is ripe for devils' advocates. You're absolutely right in the sense that until there is a biomarker there will always be doubters that Lisa, Erik, Jeri, Beth, others, and myself actually have the same illness as you do. In fact the same goes for anyone that has ever improved from ME/CFS.
You can also say the same as Mary Schweitzer, Bob Miller, and other long-time advocates, but you probably won't because they got better from a drug even though we have nearly identical immunological profiles.
It doesn't anger me in the least to be the object of skepticism. If this piqued the curiosity of any patient in the position to do this, then that's really the best I can hope for. I'm not interested in proving my diagnosis to anyone else.
There are a number of us willing to convey our experiences.
http://www.x-rx.net/blog/2011/12/tunnel-vision.html/comment-page-1#comments