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doctor for gut & mould

Discussion in 'General Treatment' started by perardua, Sep 9, 2013.

  1. perardua

    perardua

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    I don't have CFS. My problems are hunger and brain fog. I have blastocystis hominis, candida overgrowth, bad bacteria and a shortage of good bacteria in my gut. I have a mould susceptible genotype (4-3-53).

    I would be very grateful to hear your experiences of different doctors.

    Is De Meirleir a doctor interested in doing everything possible to get you well? Or is he more interested in research?
    Does he treat mould patients?
    Does he always prescribe antibiotics early on?
    Is it possible that I have parasites which need to be treated before bacterial dysbiosis?

    What is Dr Klinghardt’s current protocol?
    What tests does he do?
    Is Dr Cheney very good?

    Many thanks in advance
  2. Erik Johnson

    Erik Johnson Senior Member

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    Dr DeMeirleir is not interested in mold.
    Dr Cheney was not for many years, but has taken a fairly recent interest in Dr Ritchie Shoemakers work.

    I am a 4-3-53 too.
  3. minkeygirl

    minkeygirl Senior Member

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    Did you find out about that genotype from 23andMe testing? Where would I find it?

    Minks
  4. Erik Johnson

    Erik Johnson Senior Member

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    I was tested by Dr Shoemaker.
    He is now retired but is training other doctors in the Shoemaker protocols.

    My experience took place before there were any "mold doctors"
    I relied on pure avoidance, and wondered how many others were in a similar position as I.

    Vast numbers, it appears.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Dr. De Meirleir is now. He tested me.

    Sushi
  6. Erik Johnson

    Erik Johnson Senior Member

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    Thanks for telling me. A recent development.
    It appears that I made myself "audible" enough, out here in Nevada.

    ME CFS Alert

    Deborah: I just want to ask one more kind of technical, pathogen question. I have found that I have a great deal of mold and mold toxins in my system. No one had ever tested for this. ...And there are a group of people out in Nevada who complain quite audibly that they have a great deal that’s been ignored. And I looked it up -- I have the kind of toxins that condition people for liver cancer and kidney cancer. Have you worked at all on molds?

    Dr. Kenny De Meirleir: No, but when there’s a reason to, we test people for them. It’s either food borne, originating in food, or environment. And certainly in houses that are very closed and the windows are never opened, and that are humid, you find a lot. I think Ritchie Shoemaker’s work is very important here, and he’s come up with some strategies to treat that.
  7. perardua

    perardua

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    Minks I am in the UK so I did the genotype test by post. I asked the lab (Quest? Labcorp? can't remember) to post me the kit and then I posted it back to them.
  8. minkeygirl

    minkeygirl Senior Member

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    Thanks, I thought maybe you did the 23andMe.
  9. perardua

    perardua

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    Sushi may I ask what tests De Meirleir did? I would like to have melanocyte stimulating hormone tested, but I think its only available in the US
  10. perardua

    perardua

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    I did the test with LabCorp because it was what Dr Shoemaker's office recommended. It is the HLA test which used to be number 012542 (now has a new number)
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Re: mold, he ordered the HLA test and then:

    Alternaria alternata Gm6
    Aspergillus fumigatus Gm3
    Aspergillus niger m207
    Candida albicans Gm5
    Cladosporium herbarum Gm2
    enicillium chrysogenum Gm27

    That was one year, I'd have to go back and check other years.

    Sushi
  12. Erik Johnson

    Erik Johnson Senior Member

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    When Dr DeMeirleir was giving a lecture at the Whittemore Peterson Institute, I reminded him of this 2004 conference and of my 25 years of effort to obtain an investigation into the evidence that started the syndrome.
    He did.

    I actually refused to do Dr Shoemakers HLA DR tests at first, because my trust in doctors has sunk so low.
    This is why Dr Shoemaker didn't think I was a "double dreaded" in Mold Warriors.
    Later, when he learned more of how serious I am about avoidance, he demanded to know, and paid for it himself.

    So far, Dr Shoemaker remains the only one who has told CFS researchers about it, but they say nothing.
    Which makes me wonder if perhaps our CFS researchers would like to figure out some way to completely
    bypass seeing me vindicated.

    Or at least delay it until after I've gone on to the big Compost Pile in the Sky and am not around to say "Told'ja so"
    ----------------------------------------------------------------------
    Mold Warriors
    By Dr Ritchie Shoemaker
    Gateway Press 2005.

    Chapt.23. Mold at Ground Zero for CFS
    "History doesn't remember the critics"

    page 447
    -Answers from Abroad: Vindication for Erik

    One of the researchers who was well represented at the CFS meetings was Dr Kenny DeMeirleir from Belgium. He has published extensively on the different mechanisms that contribute to Chronic Fatigue Syndrome. Before I could talk to him, however, Dr.Robert Suhadolnik presented his data on the enzyme complexity involving RNase-L. He had been working with Drs Peterson and Cheney for some time.
    I asked him about mold and CFS. Making me fall to the floor, he said, "Oh yes, we know a lot about mold exposure in the original cohort in Incline Village. The source of activation of the endopeptidase that cleaves RNase L is increased response of a cytokine, alpha interferon."
    "Now wait," I said, "our data is very clear that alpha interferon levels are increased like crazy in mold patients compared to controls. Can we say that mold exposure doesn't change RNase L like you have reported in putative viral CFS patients?"
    Dr DeMeirleir chimed in, "We know that cytokine increases are important activators of the subsequent increased activity of these enzymes. Given your data, we need to look again at our data in which we clearly see changes in innate immune responses in CFS. Mold could be the common denominator.

    The issue for me was that while DeMeirleir knews about MSH, innate immune response activation, including complement, coagulase negative Staph and changes in exercise tolerance and reduced VO2 max, he didn't know about VEGF.

    But he knew about mycotoxin binding to Toll receptors (no one else did), in fact, he said that a Toll 3 receptor, a mycotoxin receptor, was critical to the abnormalities in CFS. When I said that the interferon and IL-1B increases could be mycotoxins, binding to the Toll 3 receptor, activated excessive cytokine responses that then altered genes expressing autoimmunity, VEGF and erythropoietin and lowered MSH with all its downstream physiologic changes, Kenny just smiled.

    "Yes, when we can put in the changes in the other findings (increased elastase is just one example) that I know to be true, alongside yours, then we might begin to understand Chronic Fatigue Syndrome," he said.

    Let's look again at the chronic fatigue from a mold perspective, looking at patients like Erik. Was there the potential for mold exposure at Incline Village? Sure, but no one looked properly. Was there a distinctive grouping of symptoms? Sure.
    Was there a disciplined "ruling out," a differential diagnosis of all variables that led to the viral diagnosis. No.
    Now that we know the biomarkers for the viral cause of CFS are not specific for viruses and indeed they're also affected by mold, can we rule out mold as the source of the illness? Of course not.

    In the End.

    Erik Johnson is a Mold Warrior. He'll never give up demanding that physicians recognize an obvious truth:
    Mold hurts people.
    He follows no one else's ideas because his ideas are uniquely confirmed by his time and his experience.
    For 25 percent of the population with mold susceptible genotypes and exposure to indoor resident toxic fungi, no mold avoidance
    protocols will reduce symptoms. For those like Erik, extreme mold avoidance is a successful strategy for a better life.
    The point of this chapter is simple. We've come a long way since Erik's Incline Village experience. We can show susceptibility to
    chronic mold illness that won't improve with mold avoidance with a genetic blood test. Mold illness, like Erik's, adds to the public
    health burden beyond the genetic basis of chronce cytokine effects from biotoxins.
    Regarding Erik's insights, I remain in awe. Despite the fact that his physicians weren't interested in his helpful insights and the incredible
    personal abuse he took for his beliefs over the years, in the end he was right.
  13. perardua

    perardua

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    Thank you Sushi, may I ask if mould was a problem for you and if so what treatment de Meirleir recommended. Does he treat for parasites?

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