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Biotoxin/Mold Illness

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by soulfeast, Aug 22, 2010.

  1. soulfeast

    soulfeast Senior Member

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    Want to start a specific thread for this.

    Testing so far:

    HLAs: multisuseptable (4-3-53) and low MSH (1-5). Seemingly this is the worse combo one can have.

    Tests three years ago (tested by an alternative clinic newly into biotoxin illness and not very savvy about it.. didnt think to have me check my house for mold or to test other important markers than the ones I wil llist below then handed me a script for csm.. then lyme doc was not convinced of all this biotoxin stuff and convinced me not to follow up)

    leptin low
    msh low
    vip low

    this was three years ago when I was not having CFS symptoms, more neuro symptoms.

    Real Time Lab urine mycotoxin came back neg (I just heard from someone who has been through this who told me her labs were also negative but still had mycotoxin illness.. this is a random spot urine test)

    IgE mold panel neg and IgG or IgM for stachy neg.

    This year tested house for second time for mold.. located.. remediated... stachy. Given we all have a "dreaded" HLA type here.. two of us tested for low msh gene as well, we are getting out of the house, getting rid of most furniture and having the house cleaned. Most likely will not return. Stachy does not go air borne so its a difficult mold to locate. We did have a proper remediation with rooms sealed off, blowers, scrubbers, etc but there was cross contamination that we do know of on MBR carpet coming out of bathroom with the stachy and one spore was found (equates to 7 spores per cu meter) in LR which is one story down from bathroom and most likely from cross contamination. Thats not a lot, but we dont know how much and may never since stachy does not stay air borne for more than 2 hours.

    We are ordering an ERMI to get some idea, but we are convinced to get out of here without our belongings.

    Running shoemaker labs next (along with XMRV-HGRV) to get a clearer pic.

    Would love to hear experiences from others.
  2. adamv

    adamv

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    www.BIOTOXIN. info is where you should be looking if you have been exposed to toxic mold and are sick. This website also tackles chronic lymes disease. Mold/chronic Lymes are the same illness/symptoms but different source. I think that medicine will turn to treating the cause of illness instead of treating the symptoms in the future. I estimate that there is a percentage of the population that is affected by mold in varying amounts of illness intensity. The numbers/probabilities are staggering and so are the number of misdiagnosed. I was misdiagnosed for Rhuematoid arthritis by 3 doctors and my cancer was only a symptom of BIOTOXIN illness from the inflamation. 20% of exposed mold patients never recover and end up in wheel chairs because of TGF-Beta 1 or obese because the illness affects leptin levels, or with Fibrmalagia and with chronic fatigue syndrome or MS or Lou Gherics. I know someone who died of a ruptured spleen because of toxic mold. There are a host of other problems that arise from exposure from toxic mold. It kills more people than anyone knows. Dr Shoemaker is the leading doctor in this field....brilliant.
  3. slayadragon

    slayadragon Senior Member

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  4. Forebearance

    Forebearance Senior Member

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    I'm so glad you're getting out, soulfeast.

    I think there's going to be some kind of interaction between XMRV (or its cousins) and biotoxins. Somehow XMRV infection must be making us easier to poison.

    Forebearance
  5. soulfeast

    soulfeast Senior Member

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    Thank you, Forbearance. Im wondering about the multi and low msh combo.. I think this one may be a tough one and wonder how many people who have had this combo have gotten better.. a little or a lot.
  6. soulfeast

    soulfeast Senior Member

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    Does anyone knwo the cut off for leptin for actos use? I read it somewhere and now I cant find it. My leptin is 11.5 labcorp and retesting with quest.

    Thank you...
  7. soulfeast

    soulfeast Senior Member

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    I have more testing in. I have been out of the water damaged house (bathroom knee wall) for about 3 weeks.

    My c4a is elevated and tgf-b1 as well. C4a levels are between 9000 and 10000. This is the range where Shoemaker puts chronic lyme.

    My Igenex Wb is back and I am IgG positive and IgM borderline.. 2 bands make a positive and I have in indicative and one positive.

    My VEGF is in normal range which is good news and my EPO is slightly elevated. This will make VEGF rise.

    Macrons test still pending as are a few more biotoxin related labs. Retroviral labs as well are pending.

    When I first relocated, I felt my symptoms lift. I felt more energy. Then my back went out and my legs were causing a lot of pain.. and it felt like toxins accumulating in my legs. Chiro seemingly addressed this and the toxic, full feeling in legs lifted greatly.

    Now I have crashed. I dont know if this is par for the course when one relocates and would love some insight.

    I am also looking for info to share with my MD about the use of actos. I have a leptin level of 7.7 and the cut off for using actos is 8.0. I read where one person used actos with a leptin level of 7.9 and I am not sure how hard Shoemaker is that line and why.. any explanation, insight, experience would be appreciated. Actos helps keep the cytokine reaction down but if one has low leptin there is a potential complication and though I have read this somewhere (or saw on one of shoemakers videos) I cannot find the info to give to my MD. It is like looking for a needle in a haystack. I dont know why Shoemaker cant make this info more clear and more accessible.

    Im about to pull the can of csm out of my pantry and start using it.. my concern is that a lyme infection actos is even more necessary ..seeminlgy more cytokin action is triggered.

    Thanks for any input. If you have a mold recovery story to share, please do, whether you are in process or have completed your journey.

    Thanks so much... (seemingly it is very important to use Shoemakers lab draw sheet and to specifically use the labs he recommends.. the labcorp leptim level I mention above is well above the level from Quest, the lab recommended by Shoemaker. my daughter had her c4a and c3a run by labcorp and they sent to cambridge not national jewish center and we gave them the correct code on the lab requisition.. but it was not shoemakers lab draw sheet and went to wrong lab.. cambridge.. mine went to correct lab and we used shoemakers draw sheet for my labs.. the leptin draw we made before we realize how careful you have to be)
  8. aquariusgirl

    aquariusgirl Senior Member

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    CSM

    It may be different for lyme sufferers, but I had a horrible reaction to CSM. Vomiting, nausea......and then a tightness in my head which only abated after I researched some lyme boards and was reminded that CSM depletes B12 & fats. I took some B12 and fats and the brain sensations cleared up.

    I should be clear.. I didn't follow what I understand is a dosing schedule that some people use...every 8 hrs or whatever it is.

    I just took 1/4 of a scoop once a day.

    I'll be interested to see how you get on with it.

    I can't understand why some can tolerate it and others can't.

    It's frustrating because detox is a big roadblock for me.
  9. lono

    lono

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    Re: Cholestyramine

    I've taken Cholestyramine and WelChol over a long(er) period of time - months and months - and feel that it has helped. The improvements were very gradual though (over months), so I think this makes using it more complex.

    Re: Lyme. In my opinion there are no good answers on this. If you go see an LLMD they'll almost certainly tell you it's Lyme, but I think it's also likely your symptoms are related to the chronic inflammation (Dr. Shoemaker now refers to this illness as Chronic Inflammatory Response Syndrome -- CIRS). But it seems like it's almost never clear what is causing the chronic inflammation.

    I'm definitely still sick, but I have had improvements. I believe the things that helped me the most were: Cholestyramine, gluten-free and dairy-free diet, moving from moldy housing, low dose naltrexone and Rich Van Konynenburg's methylation protocol and sleep meds so I get decent sleep. I did longterm antibiotics, but for me they didn't seem to help. Which things helped the most? Who knows.
  10. soulfeast

    soulfeast Senior Member

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    I hear you about which things helped most. I just moved from stachy house, doing methylation (using some of dr Amy's supplement suggestions in addition to Rich's), gluten free... been sneakign in the dairy and shouldnt with glutamates so high, could not tolerate long term abx, havent tried LDN>. can you use that with CSM or Welchol? Probably a stupid question

    I think so with the CIRS> Makes sense.

    How do you dose the CSM or Welchol.. do you take 4 times a day or less and do you pulse or non stop?

    Thanks, lono.
  11. soulfeast

    soulfeast Senior Member

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    Good to know to keep an eye on b12 and fats. I am low on fat soluable nutrients and b12 and havent started csm. Thank you.

    I think its 4 times a day and have no clue how folks can do that and take all the supps and meds I do.

    My lyem doc sai on scoop at night.. ?? Working with alternative MD for a fuller biotoxin protocol, though it looks like its actos for some and csm.. hoping we can address with some specifically targeted antiinflammatories and play with binders.

    It will be interesting....

  12. Forebearance

    Forebearance Senior Member

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    I hope it goes well for you, Soulfeast!

    I would recommend starting the csm gradually to see how you react to it. Yes, Dr. Shoemaker writes one little note in "Mold Warriors" to "push fats" when taking csm. In practical application it means eat as much natural fat as you can. The csm will suck it up, along with the biotoxins. If you don't eat fat, you'll get really constipated. You may want to increase your doses of fat-soluble vitamins, if you take any. And you may want to keep an eye on your hormones if you take them, since hormones are basically made out of fat.

    I couldn't tolerate the csm myself, because it was too strong for me. Even a tiny bit made me feel like I was going to start getting dental problems. I'm really sensitive to my level of calcium and some must have been getting sucked up by the csm.

    But there are gentler alternatives. You can take phytosterols, which are a natural treatment for high cholesterol. They also remove bile from the digestive tract, like csm does. You can take soluble fiber, which is even gentler. That's what I take. Even though it will take forever to get me detoxed, that's what I can handle without doing myself harm.

    Hmm. aquariousgirl. I wonder if the digestive symptoms you experienced while taking csm were related to your gall bladder somehow. Detoxing makes the gallbladder work harder. It's got to push more bile through. If you have some gunk in there clogging things up, maybe it could make you feel bad.

    You could try the olive oil and apple cider vinegar in water drink for cleaning out the gallbladder. I notice that the health food store is even selling pre-mixed apple cider vinegar drinks. Or maybe you could start with something gentler like soluble fiber and work your way up to using csm.

    Soulfeast, you could try some PGX to see if it helps you. It does one of the things Actos does - it prevents blood sugar spikes. It's also made out of soluble fiber, so it might help with detox, too. Maybe if you tried it and it felt good it would mean that Actos would help you.

    Forebearance
  13. lono

    lono

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  14. soulfeast

    soulfeast Senior Member

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    thank you both.:) Im up to two doses of CSM a day.. first dose, I felt great the next day and it was just 1 tsp but not sure that was from the csm or a concidental lift. Now at 1 tbs twice a day, I feel as rotten as I did before so who knows if it si working. I am fuguring I was to feel more rotten if the actos is needed, an upswing in cytokines which I dont think I am experiencing. Im giving this a month or two if I tolerate and go from there.. I'll have to do the slow and easy with my kids and will continue with myself after this run. Speaking of.. no constipation yet but taking 12,000 mgs of C. Got to figure out how to work in the third dose.. no clue how people do 4 unless they are very organized and take few supps. Good idea to push the fats and watch hormones.. didnt think of that. Thank you..
  15. soulfeast

    soulfeast Senior Member

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    Im guessing a bile stimulant and a binder would not be a bad idea as an alternative? I know some people take a binder before a coffee enema as well.

    The article is quite interesting lono... no biotoxins in sweat.. half way wishing not if the biotoxins get absorbed into clothing etc. But would be nice to be able to sweat them out....
  16. slayadragon

    slayadragon Senior Member

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    I've been taking csm for almost three years now, and at significant dosages (though rarely at four packages per day) for almost two years.

    At least for me, I don't think that Shoemaker is correct in suggesting that people take four doses, evenly spaced, during the daytime hours.

    My own body seems to do most of its detoxifying at night. This seems to be the case for other people too (which could be why ME/CFS patients almost all feel like crap when they wake up).

    Thus, taking csm in the middle of the day isn't that sensible.

    At first, I did try the evenly spaced method. But as time went on, I started shifting more and more to taking it in the evening hours, plus a dose in the morning.

    This usually turns out to be a dose an hour or two before bed, a dose before bed, and a dose in the morning. Sometimes I will wake up in the middle of the night and feel like having a dose. Occasionally I will feel like it's a good idea to do a dose in the middle of the day, but not too often.

    Mostly I'm just doing this by intuition. I take it when it feels like a good idea, or when I feel sensations of heartburn (I think this is actually the presence of chemicals), or when I think of it. If I'm detoxifying fast for some reason (because I've recently had a big hit, because I'm in the Godforsaken wilderness, because I'm promoting detox heavily with methylation etc.), I'll take more. If it doesn't seem like I'm benefiting much, I take less.

    YMMV.

    Best, Lisa
  17. mojoey

    mojoey Senior Member

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    I just got my ERMI test back. The ERMI score was 6, which means I have more mold in my house than 75% of households. Stachy was not found, but high counts of aspergillus, penicillium, mucor. I don't think this could lead to mold poisoning but rather sustained toxic burden. Sort of like ignoring dietary restrictions every hour of every day.

    I do have the dreaded HLA haplotype which makes me that much more sensitive to mold. I'm gonna guess that one or both of my parents do as well.

    Dr. Lin at Mycometrics wants me to an air sample from the drywall cavity and submit that for more testing. What a freakin expensive ordeal..
  18. slayadragon

    slayadragon Senior Member

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    What will taking an air sample from the cavity accomplish, does Dr. Lin think?

    This is why Erik does not believe in testing, and why I wish that I'd not wasted $1000 getting my own house tested.

    You can test like crazy and end up getting totally misled.

    And even if something comes up on the test doesn't mean that you know what to fix (because even if you try, it could be somewhere else too).

    Trying to fix houses is a nightmarish situation even if you know a place is just bad in specific areas (like my house was). The only good experience I've heard is someone who used a Mold Dog. (Is there one of those available in L.A.?)

    How did you feel when you were living in your parents' home in the past, compared to when you've been elsewhere?

    Did you get worse than when you first got sick, stay the same, or improve?

    Think back to the time over the past five years (since you got sick) when you were doing best vs. worst. Just put aside for a few minutes any other treatments you were getting and just think about your living environment.

    That's not a perfect guide, because there are other factors that influence our illness. But it's still a more accurate test than anything that "mold professionals" (who are basically useless) will do for you.

    Best, Lisa
  19. mojoey

    mojoey Senior Member

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    The testing is not really for me. It's for my family. If I didn't have my family to account for, I wouldn't waste money testing--I'd just move. I already know that I have sensitivity issues in that house; the horrifying 28000 c4a when I was living there corroborates that. But when it comes to proving it to my family, I need more proof. I have the dreaded genome, so presumably one or both parents do too. I know my dad has mold sensitivity based on testing. They're convinced that if there's mold in our house, it's not out of the ordinary for the area (inland orange county, CA) and that it would mean they can no longer live in california, so if spending a few hundreds dollars could lead to finding a specific cause like actual water damage which would typically call for remediation or moving altogether. The risk is that we find slightly elevated levels of mold, no water damage, and end being a few hundred dollars poorer.
  20. slayadragon

    slayadragon Senior Member

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    Oh, I see. It's certainly true that once we get sick from this stuff, protecting our families from it becomes something that we'd really like to do.

    The fact that your C4a was that high does suggest that there is a problem there for you. But that doesn't mean that it's not basically okay for most people. I don't think that 25% of buildings make people sick.

    Then again, the ERMI could be underestimating the problem. Or your parents could be sensitized from other exposures.

    It seems to me that your parents' situation is the one that Shoemaker's tests are designed to look at.

    ME/CFS patients almost always have at least some of his markers messed up, but not all of them. Some of the test results seem to fluctuate randomly. And our bodies are so messed up that I think we can look like we're having problems on those tests even if we're not getting significant exposure.

    (I just got an elevated leptin myself, for instance. VEGF low normal, other results pending.)

    But people who don't have CFS should be normal on just about all those tests, if they're not getting exposure. If they show signs of illness on the tests, that makes it more likely that the environment is a problem and that their health could decline as time went on.

    So his tests could be an alternative to doing more testing of the house, perhaps.

    Best, Lisa

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