Several people have emailed me privately about the veracity of Lisa & Erik’s claims, some even saying that they’re not as healthy as they make themselves out to be.  I have combed through much of what Lisa & Erik have told me.  Yes, they continue to insist that somewhere close to everyone has benefited from doing avoidance according to Erik’s protocol.  There was one case I mentioned in my previous blog as the one anecdote that runs counter to this trend, and Lisa readily agreed with me about the lack of benefit (thus far) in this case.  I don’t see a shred of dishonesty.  Sure, when they talk about avoidance to a bunch of newbies in a post, the summary of anecdotes must come off like snake oil: after all, what other treatment in our community has exceeded even a 50% success rate (yes including Ampligen)?  But when I dig deep & ask for details, the details they’ve given me have been most consistent with what I hear from the source.   From what I can see, Lisa has eagerly welcomed scientific skepticism of her “theory” on the forums.  Additionally, I’ve seen Lisa in person and I can tell you: I would absolutely kill to be as functional as she is.  From what I hear of Erik, yes his lifestyle must appear really odd to people not decontaminating in a big city, but he works a full-time job & can climb more mountains than your sherpa ancestors.  So although I often disagree with their methods, I have no bone to pick with Lisa & Erik’s honesty.  They are not omniscient of all facts in every anecdotes, and they’re clearly trying to tell a narrative about avoidance, but why do two very intelligent individuals (one that worked w/bioweapons, and another that has a PhD from Northwestern, both of whom could surely be generously financially rewarded doing something else) continue to tell this narrative for zero pay?  Think about what they have to gain from lying.  Please, just think about it.  I think they press on because these anecdotes of sick patients hiking again are staring our community in the face and deserve a real research study.  That’s the only logical reason I can come up with.

I think the point here is: does extreme avoidance benefit as much as it did for Erik?  Is your expectation to climb Mt. Whitney?  If so, extreme avoidance may have a 50/50 chance of being a great disappointment!  But there are many out there whom disagree with Erik & Lisa (on several ends), yet readily admit to benefiting from mold avoidance.  Paula Carnes writes on Jamie’s blog that mold avoidance is not a cure.  Whoever said it was one?   Whoever said Ampligen is a cure?  But would you not jump to take ampligen if it cost the same as your nightly sleep medications?

I sure as hell can’t climb Mt. Whitney yet, and I sure as hell don’t want to tempt fate by doing so.  Hell I celebrated climbing 1000 ft 4 months into extreme avoidance.  But here’s the bottom line:

2010: Crashing from 10 standing pushups against a wall after $20,000 spent on an experimental treatment.

2012: Burning from 210 pushups

I’m far from healthy.  I still have bad brain fog & debilitating gut issues, and you may say “HA! gotcha!”   But if I were still me in 2010 and I knew that doing this would lead to 2012 me, I would simply say, “feel free to focus on the details while I start getting ripped.”

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About CityChanger

This blog is about my participation in a clinical trial for ampligen, an experimental immunomodulatory and antiviral drug, for ME (Myalgic Encephalomyelitis).

18 responses

  1. Kelly Connor says:

    I love your intelligence and humor!

    Personally, I am one who doesn’t have much hope of a cure. Because lots of doctors assured me I didn’t have Lyme and it went untreated for the first 10 years while I was diagnosed with many syndromes.

    Discovering that a toxin exposure flattens me, and has been doing so for 14+ years, was a revelation. It’s a big difference between living with Chronic Lyme and being unable to stand (and hardly breathe) from a toxin exposure. I do my best to avoid biotoxins from external sources and whatever I can do about the Lyme biotoxins.

    Thank you for your objectivity.

    Kelly Connor

    • CityChanger says:

      Are you treating Lyme now Kelly? I was told I had lyme (and tested pos on igenex for CDC standards). Treating it via both hard core ABx & integrative methods helped little, however. I wish I’d taken biotoxin avoidance more seriously when I found out I have the dreaded multisusceptible HLA genomics, but whenever I read “mold warrior” i just passed right on through. What intelligent person would see “mold warrior” and actually do anything but scoff? That’s why a name change for this movement is beckoning.

      I hope you find the wherewithal to do whatever treatment it is you deserve, Kelly.

      • Kelly Connor says:

        Thanks so much for the good wishes. I am so jealous about the push-ups.

        I have a doctor who will prescribe small amounts of antibiotics, but I’m allergic to penicillin and cephalosporins and would have to go out of state to get IV antibiotics. I also take antifungals, antivirals, and antimicrobials (tindamax, hydroxychloroquine). I also have gut issues (I almost said “big gut issues” that too:))

        My current thinking is that I need to get to a place that’s as clear as possible; for now, I have to go to my Mom’s everyday as she is bedridden and I supervise her care.

        When I get to a clear place, I want to address neurotoxin elimination somehow. Anything I do for that here just makes me sick.

        I forgot to say earlier that I am so grateful to all who have gone before and shared information. The resistance they have encountered is shocking. (It makes me wonder if a whole lot of people are neuro-toxic and in denial.)

        To hear that you were Igenex positive and have made so much progress gives me hope again!

  2. CityChanger says:

    I wouldn’t be jealous Kelly. Instead, know that someone that was basically anaerobically wasted can get back into even what normal people consider “fitness.” I had trouble mustering the strength to operate a steering wheel & couldn’t sit upright for more than a few hours a day for years, and yet the ability to walk long distances again resumed within 2 weeks of being in the desert.

    I’m really sorry to hear about your mom. Family commitments are an understandable and probably the most common barrier to doing this exercise. All of us that don’t have the same should not take our fortunate circumstances for granted. I think the best thing we lucky ones can do is to continue being transparent about the good and the bad so that others whom have this on their radars can learn from our experiences.

    Yes, CDC positive for IGM!

  3. Erik Johnson says:

    How very odd that people would be so eager to dispute this concept that they feel comfortable in dismissing it with the words.

    “That’s just YOUR theory”

    Soon these very same people will be saying that it is MUCH too important for YOU to claim that this theory was yours.

    Humans is funny critters.

  4. Bubba B. Curious says:

    Erik,
    How many people do you know of who have recovered by following your methods?

    How many people do you know of who have recovered by avoiding toxic mold without using the “extreme mold avoidance” biowarfare protocols that you learned in the Army? How long have you known of them? What places have you written about them? Maybe I have missed it, but it seems like that would be very interesting to most people.

    Also, how long did it take Shoemaker asking you before you took the HLA tests? And did you know you were very sensitive to Stachy before you found out you were when you were in the Army? Thanks.

    • Erik Johnson says:

      I only knew that it was some kind of black mold which was bothering me.
      I didn’t find out the name “Stachybotrys” until 1997.
      My HLA was tested about a year after MW was published, when Dr Shoemaker saw how serious I am about avoidance. I didn’t much care, but he demanded to know.
      If people aren’t swayed by walking out of the ampligen program and climbing a 14,500 mountain in six months, I reckon that anything I say will fall on deaf ears.

      I have deliberately stayed away from offering guidelines, for this only opens everything up to more criticism. It hasn’t paid to put this up in front of such a hostile audience.

      This stuff was present at Ground Zero for CFS. I watched “toxic mold” go from a non-entity to a household term that strikes fear. That’s quite a shift in a very short time.

      I think researchers ought to get off their duffs and start acting like their name implies.

    • CityChanger says:

      Bubba,

      You asked the million dollar question. An anonymous person sent this to lisa:

      “The lack of objectivity about mold avoidance is not any one person’s responsibility but due to lacking experimental design. There has never been a controlled experiment on extreme avoidance, just one-on-one case studies. People that have avoided biotoxins without following Erik very specific protocol (which does not seem to be easy in any way shape or form, or free for that matter) certainly should not be labeled as extreme avoiders. For example, 50% of 116 people reported improvement from “avoiding mold” on curetogether, but that result is pretty much irrelevant to “extreme avoidance.”

      Until we have robust experimental controls in place, even from a crowdsourcing POV (i.e. being crystal clear about what the protocol, the sample size of patients that are following this protocol, and how to quantify improvement — perhaps PEM since it’s a landmark symptom of ME/CFS) then no one, including Lisa, Erik, Citychanger, Jamie or anyone else has the objective basis to state that it works or doesn’t work for most. Until then, all we have are anecdotes, and by definition or “anecdotes”, all presenters of these anecdotes should be exempt from criticism for their portrayals of their experience.”

    • Bubba B. Curious says:

      I couldn’t remember what you wrote but I finally found it.
      “Dr Shoemaker pestered me for years to have the HLA tests done.”
      “HLA DR by PCR 4-3-53 and 7-2-53″
      Erik Johnson 2009

  5. Chris says:

    Citychanger, “equanimity” IS a great trait of yours. Slow-to-anger is another. Although it is difficult to be a standout, ignored, rejected, or attacked and act like a cucumber, too angry a response or attitude tunes people out. It doesn’t matter if you know something that can save the world. Anger that cycles like a washer-dryer and over-sensitivity both cause others to stop listening. That’s human nature, without accounting for our resistance to others’ ways of thinking.

    Earlier this year I encouraged a patient to tune out the cacaphony and focus on her chosen path of treatment. What cacaphony? The daily web is like watching a spinning revolver. One day, viruses are the buzz; then it’s Lyme; then it’s neurotoxins; then it’s mycoplasma; then it’s autoimmunity; then viruses, and back around. We hear of some improving on modulators, antivirals, antibiotics, avoidance, or a combination – but not too many from any particular group. Most of us really don’t know what hit us, and there’s no clear direction or simple answers yet. I know it’s driven me to despair at times, and that helps nothing.

    Well, this person wasn’t doing avoidance and had blogged that she didn’t want to hear about mold ‘no more. So on top of responding angrily to her, like she was going to completely tilt Earth’s axis, some people in this realm assumed I must have meant ignoring them, and responded to me as if I was against avoidance, even trying to kill her. Great.

    I’ve been pretty open about the biotoxin and environmental viewpoint and still try to follow what you people discuss. Toxic exposure may well have played a role for me. Change in location does make a difference, though whether it’s humidity or something else about the air, I can’t all say for sure. With a messed up system, it could differ by location and even change with time. I haven’t tried true avoidance yet and sought months of solace in the desert. If I did and it worked, and I personally came to offer the thanks some feel they’re owed, frankly I don’t know I’d be welcome.

    None of us like to watch our kind suffer, waste away, and die. There are Machivellians in government who could care less; I try to channel my anger toward them without losing it. Personally, I think will be different strokes for different folks, depending on what hit them, and what’s predominant. Whether someone like Sophia Mizra could’ve been helped by being whisked out to Mongolia, I don’t know. With a spinal infection, I’d have put my money on antivirals though, if it was my daughter and I’d gotten that choice, but I wouldn’t want to have to be in those shoes. I’ve met people who’ve had to do long-term antibiotics for Lyme and are doing well, still living in this swampy climate. How much any one thing helps probably varies individually.

    This I know: the web’s not like the face-to-face meetings some of you have had. When the first thing someone reveals about themselves is that they were involved with something they formerly couldn’t talk about, the first thing I’m inclined to think on my end is, WTF? Even with time, this is a very difficult medium for really knowing anyone or establishing trust. Whether one uses their real name or a pseudonym, sometimes you can’t win either way.

    Compounding is what others chime in and not always reading all the context. Someone says, congratulations for getting your health back. It makes you think they’re totally recovered. Well, they do get around, and have a job. But they’re also considering other measures, including drugs, to go up a notch. That’s not total recovery. I’d take it, but there’s a big difference.

    Accept too that on the web, everyone voice has an influence, but none has a monopoly. The blog that’s popular today is overcome by tomorrow’s developments. There’s plenty of patients outside the handful we think we know who aren’t even paying attention. Don’t give yourselves extra angst with too much credit. And while you’re all trying to figure out how to best come across, what to call yourselves or whatever, remember that you can only do so much about others’ attitudes. Selfishly, the most important thing is that something works for you, and enjoying what part of your life it’s given you back. I know you’re less selfish, and want doctors charting the course to take a different view of things. Fine. But as for what everyone other person thinks of you or your take, sometimes you have to say screw it and move on..

  6. Erik Johnson says:

    It was others who angrily attacked those of us talking the mold paradigm when I said that CFS researchers have no right to ignore the very evidence that started the syndrome.
    In their “righteous wrath” to suppress this evidence, they forget this point:

    Everyone else has gone through the “latest fad” “Bug of the month”… but not I.
    I have never changed a thing.

    Obtaining research into the mold clue is the only reason I agreed to volunteer as participant in the 1987 Holmes et al CFS definition “patient study group” as a prototype to START this syndrome.

    Just as told in Dr Shoemakers books, “Mold Warriors” and “Surviving Mold”.

    I only stuck with the absolute original evidence from “Ground Zero for CFS” throughout this entire debacle.

    http://www.cfsuntied.com/videosvictims.html

  7. Bubba B. Curious says:

    I had something written but it looks like you need to chill out or something, Erik.

  8. Erik Johnson says:

    It is impossible to extrapolate useful projections in light of so many variables.

    It should have been sufficient to note that “the effect” exists and has been used by various degee by a few people.

    I remain perpetually amazed that people find it perfectly acceptable and appropriate to completely ignore and suppress direct evidence which began a syndrome, regardless of whether they feel it applies to them. Don’t they want all avenues investigated?

    The CFS community certainly has not done themselves much good by adopting this “If we don’t think it is the cause, then it means nothing” philosophy, for this is how many other possibly valuable pieces of evidence were left ignored until they became long forgotten.

    One would have thought they would take out their frustrations on recalcitrant researchers rather than upon me. But this has not been the case.
    The CFS community made a target out of me, simply for describing what I saw.

    In light of this consistent “Kill the messenger” attitude, of COURSE I see little point in opening myself up to further hostility.

    For this reason, I try to limit myself to pointing out that there is evidence at the inception of the syndrome which has never been investigated, and use my own experiencs as a contributory anecdotal framework to substantiate that some research should be done..

    This strategy hasn’t worked so far, since people want to pin me down on something they can find fault or flaw with… even to the point of inventing things I never said.

    So one can see why it is prudent for me to remain extremely circumspect.

    • Chris says:

      Eric, I used to read Jamie’s blog frequently and respect her opinions, though I don’t always agree with them; but she is not my Thought Leader. No one is.

      I respect your circumspection, but you can’t have it both ways either. If you want to continue speaking out, there will be dissenters, and some will ride a high horse. Well, * em. You can only focus then on refining your message while continuing to educate.

      Re: the non-avoider I spoke of, you expressed that you did not want to see another person harmed, you’d seen enough. Well, for every one of those that take another route, there will be many who still will want to learn about you guys’ experiences. You want to help them to, don’t you? Don’t let anger get in the way of that then. Don’t be no’ Porcupine.

      Thanks for the link by the way. I’m not sure why Peterson’s videos are up there too. I know he’s not talking about mold. I thought y’all had the biggest beef with the guy. Or maybe you avoiders don’t all think the same. I respect Dr. Peterson a lot, in part for his moving on despite opposition, going back to Idaho. That wasn’t just some internet reputation stuff; that was big-time s* what he encountered there. He could have wound up like a potato.

      A few links and clicks later, though, and I’m reading about others trying to make their way in a chemically hostile world. I’m also reading about Kramer vs. California Justice. This just went down earlier this year and I don’t think it’s been on many patients’ radar,

      Yes, Peterson’s training took him in a different direction, together likely with your being in the vast minority without the EBV response. It’s done. It’s history. As you try to raise the issue of SBS-etc., respect what he and the Klimases are doing with their expertise. Some people are loaded with bugs and that’s its own problem; maybe relocation takes care of that for some, maybe not for others.

      Echoing CityChanger, if they came up with a better, cheaper immune modulator that worked, a lot of people would take that option, instead of trying to uproot from families and society. Face it, most crap buildings from the ’80s aren’t coming down anytime soon, and we’ll be building more crap for a long time. I agree, that’s a band-aid and not what should happen, but that’s what likely will. After all, people still fly Southwest.

  9. Erik Johnson says:

    I gave people a chance.

    “Take it or leave it.”

    They left it.

    Their choice!

  10. Chris says:

    On a constructive note, I’ve learned a lot from this blog’s few entries, unfortunately that one must be reasonable in expectations. I was sorry to see that temperature regulation didn’t normalize as quickly as sleep and energy; I hope you still get there, so you won’t be forced to keep relocating. Along with funds, this and current physical constitution are certainly potential barriers for many, even away from mold and chemicals. Cold is cold, and heat is heat (moist or dry), and the desert climate especially must be respected. Good luck with continued progress, because as you’re telling, this is no cakewalk.

  11. Bubba B. Curious says:

    My last comment didn’t appear after the one I intended it to so I’ll put this at the end.

    Citychanger, I’ve read a lot of what Erik has written, as well as many other people on many subjects. But I have to say that as well as many other people I’ve become jaded because online activity is too often of little use and too stressful and detrimental to my health. So I may be done here. Lisa has posted lists of relevant online groups. I’d suggest you read them to know what has transpired till now. It does affect the present and future in the biotoxins area.
    As you say, getting a neutral third party involved may be necessary. Good luck finding one. Just remember that researchers are fallible humans like the rest of us.

  12. Erik Johnson says:

    I was very concerned about what happened during this incident, and wanted to tell people about what I saw. I had believed people would want to know.

    As told in Surviving Mold, I agreed to help start this “new syndrome” in order to obtain some research into the actual circumstances, and not just what doctors believed had occurred.

    To this day, that has still not happened.

    The CFS community resorted to insults, ad hominem assaults, prevarication and contrived mischaracterizations of all kinds to help ensure that it will never be investigated.

    In my wildest dreams, I never imagined that people would so bitterly castigate a person who started their syndrome.

    And then have the unmitigated gall to try and blame their own misbehavior on me.