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Shoemaker Biotoxin Thesis

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by pemone, Apr 20, 2015.

  1. pemone

    pemone Senior Member

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    How many of you have had Shoemaker labs to diagnose possible biotoxin illness as a cause for CFS? The basic theory Shoemaker puts forward is that the chronic fatigue in CFS is the result of hypoxia to peripheral tissues and brain. This in turn is caused by hypoperfusion of small capillaries as part of the biotoxin reactions.

    How many of you were tested as the HLA DR Haplotype of 4-3-53? This is apparently one of the worst two genetic profiles you can have for susceptibility to biotoxins, and lucky me I have that haplotype. This genome also corresponds to chronic fatigue.

    If any of you have pursued a Shoemaker diagnosis, did you try cholestyramine and did it help with clearing any of your symptoms?

    I have puzzled over where I might have mold in my home (I am going to get it tested). But the thought has occurred to me that the air conditioning and heating system goes under the home in 30+ year old metal tubes that are probably leaky. Water could easily have gotten into those tubes and grown mold, resulting in mold toxins mixing in with the constant airflow. I have noticed in my home that any surface that gets cleaned is layered by dust again within two days, so we do have a constant dust circulation from those vents.

    The theory is interesting to me because it very clearly explains a reason for hypoxia to the body and brain, and brain fog, which are my worst symptoms.
     
    Last edited: Apr 20, 2015
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  2. Dufresne

    Dufresne almost there...

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    From experiments I've conducted on myself I've no doubt biotoxins factor greatly in my illness. I say factor because there is more to my disease complex, including tick-bourne infections, but I suspect it started with the wrong genes and a moldy house. I have the 17-2-52A and 1-5 haplotype.

    I've used various binders, including cholestyramine, and felt wiped out in exactly the manner Shoemaker describes results from hypoxia: burning muscles, shortness of breath, fatigue etc. Interestingly I've only experienced this when I was consuming carbohydrates at the same time as I was using the binders. So it seems they are moving toxins, and carbohydrate consumption does exacerbate the inflammation from exposure to these toxins. It's been great to confirm and understand at least this much about my disease after all these years.

    I've been detoxifying regularly for the last six months or so, and have yet to feel any better, but I trust this is something I've to do at some point. I only wish I'd started some time ago as this might take a while. It's too bad the Shoemaker labs are so obscure and that most doctors are just not testing for them. It's also a crime it costs 600 USD to find out if we have one of the susceptible haplotypes. I suspect if this test were available as part of the 23andMe workup, Shoemaker's work would be taken much more seriously by those with ME/CFS, Fibro, Lyme, etc, and many more of us could be much more productive in battling our condition.

    I'd love to know what percentage of sufferers of these 'fatiguing' illnesses have these genes. Shoemaker claims 95% of his former patients had them. There's also a fairly well-known LLMD who's apparently stated 90-95% of her 'Lyme' patients have susceptible haplotypes. I can't think of her name off the top of my head but thebetterhealthguy reported this info from a conference he attended.

    I'm convinced there is enough anecdotal, as well as scientific, evidence to stress the importance of Shoemaker's work with regard to these diseases. Especially when you consider C4a is the one lab marker to be abnormal in patients suffering PEM. Also Younger's finding correlating feelings of fatigue with increased leptin points back to Shoemaker. Elevated leptin has also, of course, been backed up by the Lipkin/Hornig study.

    @pemone, I'm sorry you have one of those dreaded haplotypes. They don't call them 'dreaded' for nothing. As I understand it nobody with one that Shoemaker has ever treated has gotten even mostly well. I've read of a few people with dreaded haplotypes who've improved a whole lot and become highly functional, but they had to resort to extreme avoidance to get there. Erik Johnson is one of them. http://paradigmchange.me/erik/

    I know it's a horrible thing to have to face but those who've developed ME/CFS from biotoxin exposure and then gone on to improve have usually had to move if they were indeed in a moldy house. Remediation just doesn't cut it, especially if you're really sick or have one of the dreaded haplotypes. I don't mean to scare anyone, I only relay my thoughts because I know ME/CFS sufferers who have these genes and choose not to take the measures to see if they might improve. I think they could be missing out on discovering what might be at the heart of their misery. I spent the majority of my life in a terribly moldy house and wish I'd figured it out sooner and acted upon it.
     
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  3. pemone

    pemone Senior Member

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    You might be right on remediation. What makes Eric truly unique is his willingness to create a perfect experimental living environment to test the theory that biotoxin exposure was the source of illness. In my experience, very few people are willing to fix things that are broken, when they involve substantial change. It might be that I have no choice but to test alternate living conditions and see if that affects the energy level. I'll have to read Erik's notes carefully. Is his book the primary source of information about his self-treatment?

    I do think these things tend to be individual. Having a dreaded haplotype is only concerning in so far as you have the wrong environment and cannot fix that. If the environment is a home and you are not willing to test extensively, I think you are doomed to chase your tail forever.

    In terms of your own symptoms, do you follow up treatment with re-measurement of the critical Shoemaker markers? Because if those do not change, then probably your exposure is the reason. Shoemaker makes the point that treatment with a bile binder when you still have exposure will never cure you.
     
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  4. Dufresne

    Dufresne almost there...

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    Good points.

    I use the free VCS test online every so often. It suggests I've made improvement, but I'm not sure how much stock I put in these tests. I passed the one on Shoemaker's site while I was living in a bad environment. I failed the free test some time later, and have since passed every time. Perhaps the best way to do this test is in person, with cards and the proper setup.

    Mostly I go by feel. I know this sort of statement would make someone like Dr Shoemaker cringe, but it's easy, cheap, and proves to be helpful. I've a good sense of what's going on in my body. The house I'm in now is permitting me to make gains on some fronts, but I'm not sure if it will allow healing of the core symptoms I believe to be the result of a system weakened by biotoxins. My main concern on this front is PEM, which hasn't budged. I suspect we've to be in a very clean environment for this to happen. Moreover it will likely take some time, and it's not convenient at the moment (not that it ever is).

    Getting into a cleaner house has halted my deterioration, as well as helped on one very important front. For about four years leading up to my change in dwelling I was absolutely unable to use drugs or herbs and benefit from them. It was as if my hyper-reactive system just rejected these efforts. I could take 10 clonazepam without feeling even the slightest effect. I tried this with a number of drugs. With opioids I'd get sleepy but none of the other effects. Same for GHB. Now I'm able to use various therapeutics to treat my tick-bourne infections, and this is my focus at the moment. And sure enough if I go back to that moldy house (my parents') for even a day or so drugs and herbs will stop working. It's a strange and rare phenomenon I've only ever heard mentioned from people in the mold/environmental camps.

    I guess my thinking on the dreaded haplotype is: if you have ME/CFS and have one, that's probably why. As I understand it these haplotypes are quite rare, making up 1-2% of the population (I hope I'm correct on this number). In any case I believe their correlation with severe illness isn't coincidence. Shoemaker's vast experience with them as well as the anecdotes I've read online suggest this is a major problem for mold illness/ME. I believe the odds that someone with this haplotype and a disease such as ours just happens to be living in a clean enough house and region to support healing are slim to none. The only people I know of with ME related to mycotoxins that have had their PEM lift had to employ extreme avoidance. I don't like this idea but I figure it's something I have to face. Which is not say I'm not hunting for some other way. :)
     
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  5. Forebearance

    Forebearance Senior Member

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    Yes, I had Dr. Shoemaker's standard panel of labs done after "Mold Warriors" came out. I think his panel of labs is a little bit different by now.

    I also have the 17-2-52A and the 1-5 haplotypes.

    I had enough abnormal results in those labs to fit his definition of a person who has mold poisoning, or CIRS as he now calls it. I did try cholestyramine and I flunked out of it. It was too strong for me. So I tried other binders (phytosterols, soluble fiber) and settled on Benefiber as the best choice for me.

    I think Dr. Shoemaker has figured out a lot of very valuable stuff about the inflammatory cascade.
     
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  6. pemone

    pemone Senior Member

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    Benefiber isn't a substitute for cholestyramine. Benefiber is just a fiber product. Cholestyramine is a bile binder that actually glues to the bile excreted from the liver. Those are totally different functions.

    When you say cholestyramine was too strong, was it the constipating effect of it? I wonder if it could be combined with other fibers to overcome that.

    I also tried to start a new discussion on whether cholestyramine really needs to be taken every day of the week:
    http://forums.phoenixrising.me/inde...n-patients-with-cfs.22743/page-47#post-587799

    Shoemaker seems to say you must take it round the clock for months at a time, but that to me makes no sense. If you take it three days and then go off it for four days, you are surely moving some toxins out of you. The overall time to recover might go up if you don't take cholestyramine all the time, but I don't understand the theory under which you cannot recover taking it in cycles.
     
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  7. Forebearance

    Forebearance Senior Member

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    Yes, I'm aware that soluble fiber products are not the exact same thing as csm. But they do fill a similar function in that they bind with bile and escort it out of the body. They are just much gentler and slower.

    That's the best I can do right now. I'm very sensitive to calcium, and the csm made me feel like my teeth were getting weak. A few people actually have lost teeth because of taking it. But not everyone reacts that way, of course.

    If you find csm constipating, you can remember Dr. Shoemaker's note to "push fats". By that he means eat lots of healthy fats like avocados, fish oil, evening primrose oil, or your choice of EFA, nuts, organic butter, coconut oil, etc.

    Yeah, Dr. Shoemaker's prescribed course of csm is pretty intense. I would say take it at a dose and schedule that works for you. If you read the past threads in this section, you will find people talking about taking it at all different kinds of rates and schedules.

    If you take it in a less intense way, I think you would just take longer to recover, as you noted.
     
  8. pemone

    pemone Senior Member

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    So what is the theory behind this? Cholestyramine partly blocks fat digestion. So he wants you to overcompensate and eat even more fat than usual?
     
  9. Dufresne

    Dufresne almost there...

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    I rotate cholestyramine, activated charcoal, chlorella, and bentonite. They all work.

    If one is going to be cutting carbs in order to reduce inflammation they're going to have to increase fat intake. This has been crucial for me.
     
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  10. Forebearance

    Forebearance Senior Member

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    Yes, I guess you could say this. Technically we are using csm for an off-label use, because we are not using it to try to lower cholesterol. I suppose if you have issues with high cholesterol you might have to be more careful about the fats you eat.

    I have assumed that the increased fats are to make things more slippery in the digestive tract, and also healthy fats are known to aid in detoxification. Like Dufresne said, they are crucial for many of us who are trying to detox.

    Especially EFAs (essential fatty acids). I take lots of those.
    Even before Dr. Shoemaker came along, doctors like Dr. Teitelbaum noticed that EFAs are good for people with CFS.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Is CSM the treatment for all mold toxicity or only if you have that bad haplotype? It sounds like it is off label and normally a cholesterol med? Is it similar to statins or no connection?

    I am new to all this and have not been tested yet. But have been exposed to mold at home (and at prior job) and also have high cholesterol so am wondering if this med could help me?
     
  12. Sushi

    Sushi Senior Member Albuquerque

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    As you read more here you will see that their are a variety of approaches to treating mold toxicity. Dr. Brewer (Infectious Diseases) has developed his own protocol.

    Sushi
     
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  13. Forebearance

    Forebearance Senior Member

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    I think it's the first treatment that Dr. Shoemaker gives all his mold poisoning patients. It is normally a cholesterol med, but it has no connection to a statin. It's kind of an old-fashioned cholesterol med.
     
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  14. Ema

    Ema Senior Member

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    CSM is a binder...i may be wrong here but I think you take it with food for cholesterol lowering purposes and away from food for toxin binding purposes.

    It's not related to the statins.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    Thank you to everyone for the info. I am waiting to get mold results next week from our condo and then do testing (most likely with my former ND) since she is local and has the test kit for RTL at her office. I am expecting it to be expensive but this is very important in my quest to improve my health and for legal purposes.

    Not sure if I would try CSM and do not know enough about it yet. Need to research Brewer and Shoemaker protocols and figure out what they involve.
     
  16. Dreambirdie

    Dreambirdie work in progress

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  17. Dufresne

    Dufresne almost there...

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    I just found the following at http://www.biotoxinhelp.com/i-failed-the-vcs---what-next.html

    There's also some info about ERMI testing on that site which is probably the best way to go.
    http://www.biotoxinhelp.com/getting-an-ermi.html
     
    Last edited: Apr 27, 2015
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  18. Gingergrrl

    Gingergrrl Senior Member

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    What does ERMI testing mean? Sorry I am too tired to Google at the moment and figured some of you mold gurus may know off the top of your head. Thanks in advance!
     
  19. Dufresne

    Dufresne almost there...

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    Check out the link in my last post. There's a concise description of what it is and why it's probably the best test to use by those made sick by mold. I've no idea if it's useful in legal situations.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @Dufresne thank you and I read link. It says air samples are meaningless vs. the ERMI test but I would think if the air samples fail by standard testing then this is significant?
     

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