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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Shoemaker Interview (Mercola July 2012)

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Graeme, Jul 24, 2012.

  1. Graeme

    Graeme almost there...

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    A forty-five minute overview of his work.
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  2. Forebearance

    Forebearance Senior Member

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  3. Graeme

    Graeme almost there...

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    I still don't much care for his explanation of PEM: that we burn through glucose stores during anaerobic metabolism and then feel down for a day or two as we replenish. I've no doubt this occurs, but I don't think it explains why many of us are down for weeks following an exertion, even a 30 second exertion that's too intense. That said I find it intriguing CityChanger has succeeded in eliminating PEM solely through biotoxin avoidance.

    http://forums.phoenixrising.me/inde...gers-mold-avoidance-update.17442/#post-266325
  4. Forebearance

    Forebearance Senior Member

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    I haven't watched the interview yet, but I agree that Dr. Shoemaker isn't necessarily right about everything. He has been slow to understand that people with CFS probably have an underlying infection of some kind, for example. But I really appreciate his efforts to figure things out. I think the more people generating theories, the better.

    And I really appreciate what he has figured out about the immune system. It is so helpful! I think more people might appreciate him if they could understand that whether we are being poisoned by something or not, our immune systems are behaving exactly like those of his biotoxin poisoning patients.

    It's got to mean something about what is going on with us. it's got to be a clue.

    That's nice that CityChanger has eliminated his PEM through biotoxin avoidance. I have reduced my level of fatigue a lot through biotoxin avoidance, but I would still get PEM if I overdo it.

    Forbearance
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  5. Forebearance

    Forebearance Senior Member

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    I finally listened to it. That was really cute!
    Dr. Mercola is such an alternative guy and Dr. Shoemaker is really not, but I can tell he is trying to open his mind to things like fermented vegetables.

    What I want to say about Dr. Shoemaker is that he has invented this wonderful tool -- his treatment protocol for biotoxin illnesses. And you know how they say that if you have a hammer, everything looks like a nail? Well, we must REALLY look like nails to him, because if we take his panel of blood tests, we get the exact same results as his biotoxin patients, indicating that our immune systems and endocrine systems are messed up in exactly the same way.

    And yet we're not exactly the same. Dr. Shoemaker doesn't seem to be able to do the same kinds of miracle cures for people with CFS that he does for his patients with simple biotoxin poisoning. I know of lots of people with CFS that have been to see Dr. Shoemaker and were helped by his treatment protocol. But I don't know of anyone with CFS who has been cured by him.

    It's like we have some additional factor that is making our illness more complicated. XMRV or a similar retrovirus would have explained it perfectly.
    Darn it.

    In a similar vein, the lifestyle that Erik Johnson invented of extreme mold avoidance allows people with CFS to feel decent and be able to do things. But I think of it as a coping mechanism rather than a cure. People with CFS who live his lifestyle can still get very sick if they run into a small amount of a bad toxin. But if you can handle the rigors of the lifestyle, at least you can climb mountains and have some kind of a life while we all wait for a cure.

    I think his brilliant discovery also shows that biotoxins are an important piece of the puzzle, but not the whole puzzle.

    I really hope more researchers will come along who will try to figure out how biotoxins and CFS are related, exactly.

    And the genomics that Dr. Shoemaker talked about sound really interesting. It was exciting that he thought they would be coming along next year. I'll have to try to read more about them.

    Forebearance
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  6. Graeme

    Graeme almost there...

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    I think it's likely Shoemaker had tooth imprints on his tongue following that bit about fermented vegetables :lol: . However, he understands the importance of Mercola's forum for getting the word out, otherwise I'm sure he would have ripped him a new one.

    Erik and Lisa both seem to think there's a pathogen of some sort increasing the reactivity to biotoxins. This is something Shoemaker understandably chooses not to spend time on, though he acknowledges the possibility. Lisa claims her reactivity went down as the result of taking Valcyte (I think it was). This agrees with my thoughts on the subject. Though I wouldn't limit the inflammatory substances to the biotoxins Shoemaker addresses. I think it's just as likely lipopolysaccharide is a big player driving inflammation. In Surviving Mold Shoemaker writes that the mechanism involved in mold illness was first written about in a 1972 paper describing innate immune inflammation caused by LPS. An increase in reactivity to LPS has been found by a few researchers, including Maes and de Meirleir. In fact they report it's virtually universal in PWME's. So the bug(s) make us more reactive and this mechanism ensures the survival of the bug through a diseased, low energy state.
  7. Forebearance

    Forebearance Senior Member

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    I'm really glad to hear that Dr. Shoemaker acknowledges the possiblity of us having a pathogen of some kind that is increasing our reactivity to biotoxins.

    Ooo, tell me more about LPS. I haven't read "Surviving Mold" yet because, naturally, I got mold toxins on my copy of it and I haven't ordered another one yet. What is LPS? How do we run into it? Do we eat it? Catch it?

    It sounds like a combination of fat and sugar.
    Do you happen to have any links to the studies on reactivity of PWME to LPS?
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  8. lnester7

    lnester7 Seven

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    Anybody tried cholestyramine? (Not sure about the spelling).
  9. richvank

    richvank Senior Member

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    Hi, Forebearance.

    LPS stands for lipopolysaccharide. It's also called endotoxin. It is found in the cell walls of gram-negative bacteria. It is released when they die, and it provokes a big response from the immune system. If a lot of it is released all at once in the bloodstream, the person can go into septic shock and actually die. In lower amounts, it just provokes a big immune response.

    Best regards,

    Rich
  10. Forebearance

    Forebearance Senior Member

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    Hi Rich, and thank you.
    That provokes a bunch more questions that I will have to go research.
    Like, endo- means from within, doesn't it?
    And which kinds of bacteria are gram-negative?

    I DO really appreciate the research you have done on CFS and biotoxins.

    So Graeme, you are thinking that we people with CFS have a lot of gram-negative bacteria in us which are dying?

    Hi Inester7,
    Yes, I have tried cholestyramine, and it did make me feel better.
    But ultimately it was too strong for me, so I flunked out of Dr. Shoemaker's treatment protocol at the first step. Phytosterols are gentler, but they were also too strong for me, so I finally settled on soluble fiber and I've been taking it for years.

    Forebearance
  11. Graeme

    Graeme almost there...

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    That bit about Shoemaker acknowledging the possibility of a bug playing a part in ME/CFS is in reference to his admission in Surviving Mold that XMRV may end up being relevant. Remember the book was written in 2010, while that topic was still very hot. I've no idea how he would address this subject now.

    Forebearance, you might want to consider trying Welchol. This is the sequestrant Shoemaker suggests for those finding cholestyramine too harsh. He claims it works about 25% as effectively as CSM, so it's a significantly slower detox.

    There does seem to be an increased amount of gram-negative bacteria in PWME's. Interestingly this has also been found in autism. As for LPS studies connecting with ME/CFS, I'd look up the work of Maes and de Meirleir. I like the de Meirleir's presentations available on YouTube.

    The paper I find most interesting is this one published in the Journal of Neuroinflammtion. Plug the title into google and you'll get the full paper.

    Minocycline attenuates lipopolysaccharide (LPS)-induced
    neuroinflammation, sickness behavior, and anhedonia

    ChristopherJHenry1, YanHuang1, AngelaWynne1, MarkHanke2,
    JustinHimler1, MichaelTBailey2,3, JohnFSheridan2,3 and
    JonathanPGodbout*1,3

    I like the evidence that peripheral innate immune response stimulates the secretion of inflammatory cytokines in the CNS. I never liked Shoemaker's explanation for how exposures caused CNS energy problems; that capillaries were being choked out and inhibiting oxygen delivery (I think this was/is his main explanation). This would certainly not jive with what Cheney has found, which is an inability to handle oxygen -though, then again, maybe they're talking about different diseases. Anyways I think this mechanism is probably closer to what's going on, whether it be mold or LPS causing the initial response. It's also worth noting that the authors of this paper are advocating the use of minocycline to combat this; well apparently Cheney's been using this stuff too. I wonder if he's tested it with the ETM.
  12. richvank

    richvank Senior Member

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    Hi, Forebearance.

    Yes, endo does mean from within. There are also exotoxins, which bacteria secrete while they are still alive.

    There are lots of gram-negative bacteria. Here's some info from Wikipedia:

    The proteobacteria are a major group of Gram-negative bacteria, including Escherichia coli (E. coli), Salmonella, Shigella, and other Enterobacteriaceae, Pseudomonas, Moraxella, Helicobacter, Stenotrophomonas, Bdellovibrio, acetic acid bacteria, Legionella and numerous others. Other notable groups of Gram-negative bacteria include the cyanobacteria, spirochaetes, green sulfur and green non-sulfur bacteria.
    Medically relevant Gram-negative cocci include three organisms, which cause a sexually transmitted disease (Neisseria gonorrhoeae), a meningitis (Neisseria meningitidis), and respiratory symptoms (Moraxella catarrhalis).
    Medically relevant Gram-negative bacilli include a multitude of species. Some of them primarily cause respiratory problems (Hemophilus influenzae, Klebsiella pneumoniae, Legionella pneumophila, Pseudomonas aeruginosa), primarily urinary problems (Escherichia coli, Proteus mirabilis, Enterobacter cloacae, Serratia marcescens), and primarily gastrointestinal problems (Helicobacter pylori, Salmonella enteritidis, Salmonella typhi).
    Gram-negative bacteria associated with nosocomial infections include Acinetobacter baumannii, which cause bacteremia, secondary meningitis, and ventilator-associated pneumonia in intensive-care units of hospital establishments.

    Best regards,

    Rich
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  13. Forebearance

    Forebearance Senior Member

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    Thank you, Graeme.

    Have you taken Welchol? I haven't tried it because I was guessing it would be too strong for me.

    Thank you, Rich.

    Oh, okay, I get it. Endotoxins exist within the structure of the bacteria until they die. There are some really nasty things in that list of Gram-negative bacteria. I see cyanobacteria are in that list, which Dr. Shoemaker does talk about.

    Forebearance
  14. Graeme

    Graeme almost there...

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    Forebearance,

    Why not just use a much smaller dose of CSM, it would probably be cheaper. Try 5% of the standard dose and work your way up.
  15. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    There is a good bit of literature relating to mold toxins that suggests that a combination of trichothocenes (especially satratoxin, made by Stachybotrys) and LPS is more damaging than either one alone.

    LPS is made by a variety of different sorts of bacteria, including ones in the environment and ones that can be pathogens.

    A number of mold avoiders have reported that taking steps to decrease their pathogen load has been effective in decreasing their reactivity a bit. These positive reports have included things that address fungi (homemade kefir/yogurt, antifungal drugs or herbs, certain probiotics), things that address Lyme or other bacteria (doxycycline or other drugs), and things that address viruses (Valcyte, Famvir, other antivirals). I wouldn't be surprised if the improvements that some people report from MAF products work through this mechanism as well.

    I've tried all these things and found them to be helpful. However, in terms of really getting my reactivity down (and keeping it down without needing to take any drugs or supplements), the thing that has had the most effect is concerted detox. The amount of toxins that have come out of my body has been quite astounding, especially since I never previously had any idea before pursuing avoidance and detox that toxins were any kind of issue for me at all.

    The model that currently makes the most sense to me is that the toxins in the system have an effect on the immune system, allowing a wide variety of pathogens to proliferate. Those pathogens have a wide variety of effects, including increasing reactivity.

    In terms of decreasing reactivity fast, addressing the pathogens directly may seem to be the most efficient route. In my own case, I do think that the Valcyte/Famvir was helpful since (I believe) it was responsible for decreasing my reactivity enough that I could live (and detox) in places that were less than absolutely pristine. However, insofar as people have the goal of getting permanently well, detox seems to be the way to go.

    I did find cholestyramine helpful, though I only was able to take it early on when in a super-pristine environment. I think a problem with detox for people with this illness is that it can be blocked in a variety of ways, meaning that a multi-pronged approach can be crucial. I've used a wide variety of techniques myself, including things that release toxins from the cells (methylation supplements, other supplements), things that promote the movement of toxins through the lymph (neural therapy, other bodywork), probiotics that neutralize the toxins (homemade kefir/yogurt, certain commercial products), binders that carry the toxins out through the intestines (csm, pectin, bentonite), products that support the liver (supplements, foods, coffee enemas), things that dissolve debris (juicing, enzymes), and energetic treatments (such as the homeopathic mold remedy Natrum Sulphuricum).

    I'm increasingly convinced that a good part of the immune dysfunction of this illness comes as a result of the mold toxins causing dysbiosis in the microbiome. Mold makes toxins specifically to kill off other microorganisms in the environment so that it can grow freely. The idea that this toxin would have that same effect inside our system as it does on the walls of our house seems to be just common sense. After all, penicillin and certain other antibiotics are made from mold poison! Except that those types of mold kill off a narrower spectrum of microorganisms than does (say) Stachybotrys.

    Here's an article that discusses the importance of the microbiome. (Cheney's been discussing this for a few years too.)

    http://www.economist.com/node/21560523?fsrc=scn/tw_ec/me_myself_us

    Of course, most specialists in this disease agree that the core immune dysfunction seems to be the low Natural Killer Cell function, which allows the proliferation of herpes family viruses. So far, no one has given any sort of plausible explanation for why this becomes such a problem. My hypothesis here is that the disease gets kicked off when susceptible people are exposed to a particular toxin (e.g. a particular biotoxin) that has a really destructive effect on the NKC's and then cannot expel this toxin from the system. There are papers in the literature that suggest that certain kinds of toxins do have an effect on NKC function, so that kind of speculation does have some sort of grounding. I tend to think it's a particular type of biotoxin (such as the one that we believe to have been specifically associated with the Tahoe epidemic) that's doing this though, rather than all biotoxins. If that's the case, then unless people focus specifically on that toxin, they're not going to get anywhere (and thus will continue to believe that the biotoxin issues are not causal).

    As models for the disease go, the one that makes the most sense to me is that the inflammation from the toxins and the herpes viruses activates an endogenous retrovirus (erv). ERV's are thought to play roles in MS and ALS (both of which also appear to be biotoxin diseases). It could be that MS, ALS and CFS have different erv's associated with them, that go active when all that inflammation is present. The epidemiology of CFS is much more consistent with this theory than with the idea that it is being caused by a contagious pathogen, of course.

    Best, Lisa

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