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CityChanger's Mold Avoidance Update

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, May 15, 2012.

  1. slayadragon

    slayadragon Senior Member

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    In 2005, "CItyChanger" graduated from one of the top universities in the U.S. and almost immediately afterward came down with drop-dead, Incline Village style, severe ME/CFS. Over the next five years, he saw 30 doctors (including Peterson, Enlander, Levine, Natelson and Bateman) and spent $200,000 on various treatments. Nothing made any difference. In December 2010, he started moderate mold avoidance; in December 2011, extreme avoidance. Here is his most recent update on his progress -- including how his hallmark ME/CFS symptom of exercise intolerance has disappeared.

    "Back in January I was probably capped at 3 miles while climbing. Over the past few months, I’ve done a 1000 ft climb several times from about 4500 to 5500 ft and whereas the first one nearly keeled me over, the last one I did a few weeks ago didn’t feel like much of a challenge. Yesterday I did a 5 mile route with at least 50% of it being climbing....So all in all, things are more or less on projected trajectory. If my brain ever comes around, I’ll be jumping up and down and hugging locals that keep wondering why this bum in tanktops and shorts never leaves Starbucks, but really even if this is the finale of my improvements, I wouldn’t complain one bit."

    (He chose the blog name because he was planning to start Ampligen, but now says he is doing well enough that he is no longer interested in pursuing it.)


    http://ampligen4me.wordpress.com/2012/05/13/still-climbing/
     
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  2. slayadragon

    slayadragon Senior Member

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    Here are some comments by CityChanger, responding to questions by other ME/CFS patients.

    *

    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.

    *

    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.

    *

    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.

    *

    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.

    *

    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?

    *

    >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
     
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  3. slayadragon

    slayadragon Senior Member

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    Some more comments from CityChanger.

    >The only people that believe people get better naturally from severe ME/CFS work for the CDC.

    I've never believed that people get better from this illness from doing nothing. I've alternated between doing nothing and doing more than just about anyone I know for years. Nothing got better, my heart deteriorated surely but slower.

    As for scientific data:
    *Positive for enterovirus per Dr. Chia
    *Single-digit NK cell count and Secretory IGA count
    *rnase l dysfunction
    *very high IL-8
    *24-hr holter monitor showed classic ME/CFS HR patterns (interpreted by Dan Peterson)
    *Exercise stress test (one done by Pacific Fatigue Study Lab, other by Dan Peterson) showed VO2 max and anaerobic threshold patterns typical for ME/CFS patients
    *POTS (resting: 90, immediately upon standing: 120)
    *abnormal cortisol production over course of day
    *elevated HHV-6, coxsackie, EBV titers
    *very high H2S per urinary test
    *very elevated nagalase
    *methylation cycle block
    *very high C4a, TGF-Beta 1, MMP-9
    *very low VIP, MSH

    Again, I would argue that as top ME/CFS physicians have learned to identify the clinical picture of this disease, most patients that have this disease and have been studying / interacting with it for years know what a classic ME/CFS patient looks like in presentation and on paper. You can draw your own conclusions.

    *

    It's absolutely up for debate, and some people will be inclined to investigate more to see if their clinical picture matches mine & whether my experience is therefore applicable to them, and others will not because my experience doesn't have any room in their paradigm of medicine.

    You could also say it's up for debate whether someone like myself has the right to speak up about my experience with improvement in the absence of a biomarker, but that would depend, again, on your paradigm wouldn't it? I personally believe there is much benefit to be had in "anecdotes" because I have no desire to wait for 10 years (or whatever it may be) for a biomarker to legitimize testimonials. Crowdsourcing data in the case of GcMAF has been very beneficial for helping patients make decisions and helping doctors act quicker to lower toxicity.

    I trust in my own knowledge of the disease enough to be able to come up with an impression of whether someone shares my disease. Sure I'm not always right, but this mentality is what enabled me to truly listen and try something that's non-toxic and (compared to something like ampligen) low-cost, carries a high reward/risk ratio, and now be able to hike for 4 days in a row.

    *
    I think that the eventual treatment for our illness will need to be a combination of an immune modulator that address this so-called terrain imbalance along with a bug killer (whatever bug it is that is directly responsible for the terrain being messed up).
    Ampligen is as close as it gets to this "all-in-one" package and patients are rarely cured by it, and those that get better often relapse once off it. It's hard to say whether the lack of success is due to it not dampening the inflammation enough or not killing off enough virii. I think we'll have a better idea of which after Rituximab trials expand to include a large number of CCC patients.

    *

    Any references to "evidence based change" call for lab markers as if us being able to walk 200 steps a day for years and then suddenly being able to walk miles a day is not "evidence" or "concrete". Having to sit down when I shower for years, and now not feeling even the desire to sit. Being able to drive over 4 hours several days in a row after crashing from driving 2 in the past. Not being able to sleep with a totally enveloped sleeping mask for years, and now not needing it?

    If a ME/CFS patient is actually being rational and openminded, how can his or her first thought be "you can't prove you have ME/CFS."? I don't think it can be, because I know I was being irrational, defensive, angry, and indignant when I thought the same of other biotoxin avoiders.

    There are many ways to measure our disability and our progress, and they all should be considered on the same plane with respect to helping other patients now. Aiding politics of our illness is a totally different ballgame, and in that framework I understand the risk of anecdotes and the like. But we have to pick our battles, and being politically correct sacrifices the betterment of patients now for more patients later. We need folks in both camp.

    *

    >There is no study on biotoxins that presents a hypothesis for ME, but if one were published it to would be analysed by people here and all over the net. Whether the paper would be robust is anyones guess, but currently it doesn't exist.

    Spoken like someone that operates exclusively within the conventional research framework. As if the fact that there is no study yet on biotoxins has anything to do with the actual role of biotoxins.

    Where do you even begin looking? What are the potential benefits to studying a biotoxin for a researcher if it's something that will incite chaos? Remember the big hubbub recently about the scientists that created avian flu in a lab and Fauci (among others) saying it's perhaps best that this isn't released to the public, citing the fear that others with deviant purposes (i.e. terrorists) would recreate the finding? Some people know very well that science is never non-political and just as economically driven as any other field, yet when it comes to biotoxins act as if "it's just lacking science."

    People are willing to invest into MLVs because of the potential economic rewards: for the institution, for the researcher (nobel prize etc), for drug companies. The whole supply chain benefits from such an investment.

    What about biotoxins? First of all, we don't know what we're looking for, so investments would have to be made on massive air sampling and assays first before we can even conduct a pilot study. This is a whole new paradigm which requires new investment at every step. This requires a purely top-down investment from govt institutions because the private sector will not benefit economically in any way from a study on biotoxins.
    In this case, what incentive does the govt have to do research on biotoxins? If they do, what incentive do they have to release it to the public? In this case, their incentive for not wanting this disseminated is the same as the political barriers we have been witnessing with HGRV research. Surely you can understand this part.

    Anyway, I don't see biotoxin studies happening in any large scale, but I hope that I'm wrong. I hope that someone will see a potential treatment (something that helps us react to the toxins, something that helps us detoxify them as Lisa has been saying). However, the investment in an assay surely has to come from top down, and hopefully it will come from institutional research hoping to get academic rapport for "finding new ways to measure something novel." Then again, how much academic interest was there in the ciguatera toxin?

    Anyway I'm in the camp that there is something to be said for crowdsourcing and the power of numbers. If enough people do biotoxin avoidance and improve in very concrete ways, then perhaps some grassroots institution like the NCF will take notice and find biotoxins worth investigating. The internet allows our individual experiences and lab data to have a cumulative effect on outside interest. The only problem, as danger mouse attributed to above, is that an exercise like this not only requires sacrifice as I've mentioned, but some amount of resources, criteria that exclude most ME/CFS patients.
     
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  4. slayadragon

    slayadragon Senior Member

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    Some additional comments from CityChanger.

    From what I've gathered from all the biotoxin avoiders, traditional air quality indices have very little to do with where ME/CFS patients get big shifts. True there is a correlation between traffic pollution and feeling a shift, but that's all it is because lack of traffic pollution usually correlates with less of everything else that's associated with civilization.

    That's where the "extreme" in "extreme avoidance" comes from. The fact that we don't know what we're avoiding, so the easiest thing to do is to go to where there's nothing. This is also the biggest marketing barrier we have, since most people have no desire to get uprooted from their lives in big cities and robust communities.

    However, as an example of how little traditional air indices can have to do with this shift, I began feeling good enough to work for almost 40 hours a week from my computer when I was in a city that has some of the worst inversions in the U.S. On inversion days, this city has had days where it's the most polluted city in the nation. On a good inversion day, people with any respiratory issues are advised not to go outside.

    Well sure, when I was driving in the inversion I could feel the smog and particulates that were trapped. I had a little shortness of breath and in general didn't feel that great, which is to be expected. However, it was nothing like how I felt in a house that I was reacting to. It was nothing like how I felt in the Bay Area as a whole.

    Right now, many biotoxin avoiders are in Riverside County (palm springs, yucca valley etc) which has some of the worst pollution in the nation. Yet it is here where they are able to hike and continue improving cognitively.

    So as a whole, I would say traditional AQ indices do not address the biotoxins we're focusing on here.

    So again, this is why any reliance on scientific studies to draw correlation in symptoms with biotoxins is misinformed. We don't know what we're measuring, so correlations between AQ indices and our conditions are (I predict) totally useless. Until we know what we're measuring, we shouldn't pretend that there's any study that can be done now that can possibly give credence to the role of biotoxins.

    It's unfortunate but because there is no study that can be done now to lend credence to this, our only choices are to 1) avoid the topic altogether or 2) talk about our personal experiences, observations, and laboratory data.
    You already know where I stand on this.

    *

    >There is a problem obtaining money for ME research not because one potential cause over another would make more money but because clearly it is not in the interests of the insurance industry, the CDC, NIH, MRC to find the cause.

    Then you have no understanding of the economics driving medical research and medicine in general. You're saying a cause for which there is potentially an off-the-shelf treatment and a cause for which there is no potential off-the-shelf treatment draw the same interest? Please.

    My point is that if there is any interest in ME research at all, the choice between the two from an incentives standpoint for all interested parties is easy. Therefore, to compare the number of studies behind retroviruses versus biotoxins as etiology of ME/CFS (as apples to apples) is flawed and misinformed.

    *

    I hate to sound like a broken record, but neither Lisa, Erik, myself, or any other biotoxin avoiders that I know of have been adamant about biotoxins causing ME/CFS. It has been explored as a theory as both causative of ME/CFS and causative of the inflammatory patterns seen in ME/CFS, but without knowing what we're testing, any hypothesis that we come up with is no more than a shot in the dark.

    The reason why a hypothesis for HGRVs is plausible is because of the mountain of literature that already exists for it. A simple pubmed search can piece together a house of cards linking every symptom to HGRVs. No such luxury is available for something (or an effect) you cannot yet identify.

    If you don't understand what I'm trying to say for the 3rd or 4th time, I really don't know how else to explain this.

    From my own perspective, I never thought that inflammation could cause PEM. Well I never had any better theory for it, but that just seemed impossible. However, after looking closely at the Lights research on PEM and inflammatory signatures not seem in healthy controls, there is now evidence of pronounced inflammation in PEM.


    If you take away this pronounced inflammation (which is part of what biotoxin avoiders are able to accomplish by taking away whatever is revving our immunity into constant overdrive) the PEM can become vastly reduced, at least in my case.

    To be clear, it's not as if deep-seated organ damage and the body's oxygen toxicity (as Cheney would call it) or anaerobic reliance is gone. My muscles are in pain after walking at a snail's pace for 40 minutes, and I do not have fibromyalgia. However, I am able to sleep without any sleeping meds (to which I was on daily for years) in spite of the pain and quell the pain by next morning.

    So lowering inflammation is not a cure and does not treat the cause. If that were the case, ampligen would probably be a cure. So would rituximab. However, doing so removes much of the presentation of ME/CFS for myself and others.

    Lisa and others that aren't sure whether toxins are the cause treat the disease as if it were (mostly by taking large quantities of CSM to get the stuff out). I think this is smart from a patient's perspective. Lisa and others have or are planning on adding antivirals such as Valcyte to their regimen. No one is acting as if we know it's one or the other (perhaps besides Erik, but since he can climb Mt. Whitney, why would he want to be on any toxic drug?) This includes myself: I'm taking large quantities of CSM with zero side effects, and I'm also planning on adding famvir/valcyte/antiretroviral drugs if they help.

    The best hypothesis I could come up with is "if CCC ME/CFS patients in location A move to location B without taking any of their belongings with them, they will feel better." Try getting a scientist to man that trial, and try getting someone to pay for it.
    Since you won't be able to, I'll focus on how I feel and what I've observed, and communicating this to patients that may be interested.

    *

    In theory, if we wanted to test whether an inflammatory signature is associate with the ability to hike without PEM (which just about everyone agrees is the hallmark presentation of ME/CFS), that's really not that difficult.

    We'd have to take patients' baselines of inflammatory signature (per Lights' study) during an exercise stress test (in certain locations) and then have them commit to this exercise for, say, 6 months. All patients that do this exercise would then get a follow-up inflammatory signature during an exercise stress test.

    But again, this requires people being willing to uproot their lives as they know it and someone to pay them to do it. You can have volunteers, but you won't get much of a sample size due to danger mouse's assertions above about resources. How many people have done biotoxin avoidance all these years, the way that Erik Johnson describes it? 10? 20? 30? I'm sure the number of patients that have tried ARVs is way more than that already.

    So yeah, I have a few hypotheses for you to test, but if there's no practical way to test them what's the point?

    *

    I disagree that it may be unnecessary to identify the agents just because that may be the case for retrovirii. You cited RT inhibitors and protease inhibitors: both of these tell you you're dealing with a retrovirus. Whereas when biotoxin avoiders say they feel better from radical avoidance, the untrained eyes and ears just interpret that as avoiding the entire environment in Civilization. Hence the burden is on us to provide an identifiable agent to start.

    However, as I mentioned earlier it's much easier run a hypothesis on changes of inflammatory signature of PEM with biotoxin avoidance/location effect and associated symptomatic improvement. I'm just not naive enough to believe anyone with money or clout would want their name associated with the study design.
     
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  5. slayadragon

    slayadragon Senior Member

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    CityChanger continues.

    Kathy d's last post is Exhibit A for why we absolutely need identification of agent(s) to legitimize our avoidance efforts in any way. No matter how many ME patients lose their PEM, the chorus will continue to shout "we're all different! we all react to different things!"

    I think what's closer to reality is that we all react to just about everything. I think most long-time ME/CFS patients develop MCS, increased allergies etc. All universal signs of upregulated inflammatory immunity.

    However, the trend we've seen with the biotoxin avoiders is that they lose their chemical sensitivities, EMF sensitivities etc after they do radical avoidance for some time. In the end they are still sensitive to changes in outdoor air, so one would reasonably think that reactivity to stuff we can actually smell (smoke, pollution, grass, perfume).

    One very good comparison is addressing the MCS. Do ME/CFS patients ever lose their PEM from wearing respirators that rule out particulates? I addressed my MCS religiously for years but it never touched my PEM. I just stopped getting more ill from exposure; I didn't actually get better. I've never heard of someone that has, but I would love to hear it if anyone has.

    However, from what I understanding, every ME/CFS patient that has done biotoxin avoidance according to Erik's guidelines has improved measurably.
    In the end they are still sensitive to changes in outdoor air, so one would reasonably think that reactivity to stuff we can actually smell (smoke, pollution, grass, perfume) is downstream.


    Again, based off my experience, I can tell you whatever I'm avoiding is a totally different ballgame from dietary needs. It's really as simple as whether removing something resolves PEM, the hallmark of ME/CFS. Have you heard of a ME/CFS patient changing to a paleo diet and losing PEM? Again, I have not but if you have I would love to hear it.
    And like I said, until we are able to identify what it is we are actually successfully removing from our respiration to lower inflammation so drastically that we can hike without PEM, then of course your analogies to EMFs, diet, chemicals etc are all founded. I can't argue with you because we are lacking the scientific framework with which we could actually defend our experiences.

    Until identification comes, most people will say exactly what you've just said, and we really can't blame them.

    *

    Speaking of dietary needs, I am usually strictly gluten-free, wheat-free, dairy-free, sugar-free. Really pristine stuff. I was pretty much sensitive to most of this within a few days of onset of my ME/CFS, but I was religious with this diet for the last 2 years.
    Well, after I did avoidance, I could eat canned food in the desert. I'm pretty sure I had a crock of wheat in my salad the other day and didn't notice a thing. I've been eating plenty of sugar on my hikes. Eating any of these things in the past would've given me upset digestion, acid reflux, and the sugar would've caused thrush and dry mouth immediately.

    I mean, I'm not gonna mess around because I still think a good diet is something you want to keep whether or not a bad one causes symptoms, but the point is that with this exercise, I'm beginning to see what's at the root and what is just due to my immune system being in attack mode 24/7. Like sifting rocks from sand.

    *

    The goal is to get to a point where you're only avoiding "Agent X". However, for those that are reading this for the first time, no one starts there, mostly because it takes going through the exercise of getting clear to recognize what you're body is actually reacting to.

    With that said, I'm also in an actual town, actual stores, actual life! However, from most people's standpoints, living in a RV or tent in the desert is as far from the norm as you can get.

    My intention is certainly not to do this forever, but it's a temporary sacrifice for the chance to lead a semi-normal life in the future. There are certain big cities that biotoxin avoiders find to be good locations, such as Las Vegas and Palm Springs. Perhaps not everyone's cup of tea, but it's no GFD either.

    *

    That goes for me too. why do you think I went with that diet for years? It wasn't for fun or out of envy for those Berkeley hippies: I couldn't actually function otherwise.

    There's a very clear distinction here:

    Some things need controlling to prevent exacerbation of symptoms (foods, cigarette smoke, perfumes, fragrances, pollution, exhaust etc etc). However, when you remove these things you get back to baseline (or maybe you feel better, but either way you don't lose your PEM)

    On the other hand, removal and/or avoidance of biotoxins is reducing or eliminating PEM.

    *

    >Perhaps if we present the data of before/after bell + KPS scales and before/after inflammatory profiles, this could attract something. Researchers, doctors, scrutiny at least. The messenger is indeed as important as the message, so there has to be one variable that we focus on, and the patterns of change must be presented in a concise and cogent way, so that even though "avoidance" can be debated, the conclusion that the variable changed cannot be argued against.

    Again, how many people have actually done this? People act as if avoiders are all rich or something. Do some calculations over the course of 5 yrs and I bet we end up paying the same thing in housing costs. We're not traveling in fancy RV's (which wouldn't be a good idea for this exercise anyway). So it's not entirely about resources. I know plenty of rich patients that know who I am, know I'm a real ME/CFS patient, and yet this isn't even fathomable as a lifestyle. Because the avoiders I know are hardly wealthy, the thought of re-doing labs after feeling better just isn't reflexive at all. Someone has to pay for it because we don't need labs to convince ourselves we feel better; we just need them to convince everyone else. The selfish interest is not there.

    Regardless of reason, I don't see won't be a considerable sample size for us to run this test. That's unfortunate because the study design is really quite elementary in theory and practice


    http://www.x-rx.net/blog/2011/12/tunnel-vision.html/comment-page-1#comments
     
  6. floydguy

    floydguy Senior Member

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    Bravo to City Changer! I do hope that at some point soon there will be some attempt at testing how biotoxins impact the immune system. One researcher told me there may be an "ethical" issue which seems ridiculous. I guess it's okay to let someone be in agony if you can't prove what's causing it.
     
  7. slayadragon

    slayadragon Senior Member

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    City Changer gives thoughts on how people with ME/CFS can camp successfully.

    >Here’s my 2 cents to anyone with extreme temperature sensitivity that’s considering avoidance,this may muck up your ability to see changes, and that trying avoidance within your comfort zone may be a more productive exercise. The camping industry has evolved rapidly. Air mattresses are no longer considered comfortable. REI 2.5 inch (height) camping pads are as comfortable as any mattress I’ve ever used, and if you’re sensitive to cold, get a larger tent to accommodate a space heater. Don’t try to brave the elements if you’re not cut from the same cloth as some others. We’re all different here, even if we’re very much the same. Wind is a big issue for sound sensitive folks like me, so if you’re tent camping, splurge on a 3.5-season tent or even a 4-season tent which is built to withstand wind without flapping around all night. Even if you get a trailer, if it’s small it’ll rock around in the wind so stabilizing jacks are a must.

    http://ampligen4me.wordpress.com/2012/05/16/avoidance-braving-the-elements-pft/
     
    Little Bluestem likes this.
  8. ukxmrv

    ukxmrv Senior Member

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    It's always interesting to see someone who has CFS or ME and improved or at least as in many cases, found a lifestyle change (like biotoxin avoidence) that works for them.

    I think that the poster looses a lot by not making their identity public. When and if I find what works for me I'll not be quiet or private. I've already done publicity under my real name. I'd do more then.

    One of the good things about being public is that we old patients can see if we recognise who they are and if they are known from the internet groups. I've seen people claim to have improved, then go quiet, then end up on another group back at square one and responding to something else new again.

    I've tried camping, moving to a new location with no belongings. Read the Shoemaker book. Don't have any problems with the theories. Not arguing that this doesn't happen or isn't plausible. Not arguing that it may take a lot more time or in the right conditions than I did.

    It's very hard to do though for an average ME patient. A severe patient needs a lot of help. It can be done of course with money, helpers, the right climate and research. When evaluating new treatments any patient needs to do a cost/benefit analysis on if it is worth trying over all the other tx's availble to them.

    Obviously this person saw a lot of doctors and tried a lot of things. I'm not in the position of having his/her money or his/her ability to try all the different things they've done. My treatments, doctors and even attempts at changing my envronment have been done slowly over decades.

    Based on my own attempts there was no real benefit to me with camping, staying in a trailer or living without my belongings. I'm no better in a desert and living in locations that do make me feel a little better don't work out as a recovery or a large improvement over time.

    One of things I like about the internet is that we can "know" individual patients to an extent and follow each other for years and now decades through different lists/groups.

    Would be great if more people who follow mould avoidence would be those people. The ones on the groups that we know for years and years, the ones we see try everything and fail. I'd like to see some of them try these methods and see how they get on.

    Until then for me personally I don't get much hope from the writings of one person without all that "before" knowing of them. It sounds like all the other "cures" we read about. There is no way of checking if this person is genuine or if the claims are all made up. I've seen people who thought they were improved or just better and seen them die of cancer soon after. I've met and known people who throught they were better or cured to be struck down again quickly.

    Hope that in time the writer comes forward and we can assess this better. I hope that more people try this and have improvements and write about it. We need all the data we can get on ways to improve and get better.
     
  9. slayadragon

    slayadragon Senior Member

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    CityChanger is a prominent member of the ME/CFS community who has posted frequently on this forum and other forums. He's shared his experiences openly, under his real identity,with many people in this community. This is a very small world, and I wouldn't get very far if I went around making things up.

    If people want more information from him because they are thinking of pursuing this, then they should reach out. Based on the responses that I've gotten from people in this community when talking about my own experiences though, I kind of don't blame him for not wanting to go public. For some reason, talking about this does seem to require a very thick skin in terms of how certain people respond.
     
  10. floydguy

    floydguy Senior Member

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    I'd also add there may be work, insurance, disability or other reasons why publicly announcing what you're doing / who you are might not be a great idea.
     
  11. JanisB

    JanisB Senior Member

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    It's almost always possible to comment on a blog or private e-mail someone. This way, you can learn someone's identify if it's important to you. I personally know City changer, knew him when he came to work with an MD in a town near me who'd helped others heal. It took him a while to find the right place and the right housing situation before he got results. Plus, it took months to get used to the idea that being far from civilization could be truly beneficial.

    I just got that lesson again today when, after tent camping on a friend's property in the mountains, I went to 3 places in town, got slammed in one of them (I think it was Whole Foods) and am now feeling orthostatic intolerance, lethargy, and a lack of motivation. Over the previous weeks, I was the opposite -- hiking, full of energy, mentally active. It's a bummer that certain environmental toxins, whatever they are, can knock me back into bad CFS in less than a hour. Grrrrr
     
  12. mellster

    mellster Marco

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    I have to admit that I have routinely dismissed the potential of this and that I am still somewhat skeptical. However I had been recently on the very open (atlantic) sea for 11 days - not without people though - in a big cruise ship and you know they have to do everything to avoid any contamination, be it bacteria, mold or viruses (esp. the dreaded noro virus). And just breathing the sea air every day has definitely made me feel more energetic, sleep better and I was able to work out at least every other day fairly vigorously. I wouldn't call the difference dramatic, but significant and at least noticeable. Doesn't have to be the absence of mold though, could have been the absence of most city pollutants.
     
  13. madietodd

    madietodd Senior Member

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    The first posts contained too much information for me to sort through and follow. So for somebody who already believes this is a good solution for some people, what's the Cliff notes re. where in the US this might work?

    Madie
     
  14. mellster

    mellster Marco

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    Madie, I believe mostly in deserty areas if you have a mold issue as other areas near water might still have lots of natural mold but if its just pollutants you could be better off anywhere where the measured air quality is good.
     
  15. madietodd

    madietodd Senior Member

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    Lol, Mel - I was hoping for information about actual places to look into. There's a lot of desert in this country. Also, apparently some people are doing this, so they've found....good camping near useful resources? Other people already studying this?

    I just found this:
    • The ideal climate for someone with mold allergies is somewhere that gets below freezing for most of the year. If you don't mind cold climates, your troubles are over, unless cold weather opens you up to another set of respiratory problems.
    • There are even some types of spores that only release in warm and dry climates.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    I lived in the Hudson Valley for many years and yes, it is below freezing for way too many months for me...but still it was a moldy climate--known for it. Seems to be in the soil.

    Sushi
     
  17. madietodd

    madietodd Senior Member

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    I think the Hudson Valley is very damp. As I do more research, dry seems to be much more important than freezing.

    So where are the best dry places to live in the US?
     
  18. slayadragon

    slayadragon Senior Member

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    This is a board that Paul Beith and I put together precisely to answer this question.

    http://locationseffect.proboards.com/index.cgi?

    You can read comments about how different people with ME/CFS and mold illness responded to different locations, and note your own experiences.

    I've been to a whole lot of different places, and so if you have more specific questions, I might be able to serve as a resource.

    Best,

    Lisa
     
  19. SickOfSickness

    SickOfSickness Senior Member

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    I am curious if some people are not affected. I can't remember what thread, but someone said they did okay in moldy places but bad in other kinds. I forget what kinds :( Chemicals or building materials? I think I'm like that person. Some kinds of mold I am good with? Not good with black mold.
     
  20. slayadragon

    slayadragon Senior Member

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    Yes, absolutely! Not all molds are created equal. Some are much much worse than others, especially for people with this disease. "Black mold" (Stachybotrys) does tend to be universally bad for people with CFS. Depending on people's level of illness and particular reactivities, a wide variety of other molds may be problematic as well.

    When I first started doing mold avoidance, I was extremely sick. At that point, a wide variety of molds bothered me (though not all of them). As time has gone on, I've become less reactive to most of this mold. A few particular kinds do still have a big effect on me even in small quanties though.

    Best, Lisa
     
    cigana likes this.

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