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Interesting first appointment with Dr. KDM

Discussion in 'ME/CFS Doctors' started by SamB, Mar 27, 2017.

  1. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Other than XMRV I honestly cannot remember an idea of his that didn't work out, at least in myself.

    Can you name any? I don't mean this rudely or as a challenge. I'm just genuinely interested and accept I may have forgotten.
     
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't want to divert the thread too far from the topic of @SamB's first appointment, so I'll just comment that by "pan out" I mean that a number of times during the course of my treatment he has shifted as to what he thought was the "core causation"--which leads to the focus of treatment shifting as well. Not that each aspect of hypothesized causation didn't have merit, but none so far proved to be the core causative factor.
     
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  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Interesting you posted that diagram Alex.

    Looking at it in relation to myself: I tested PGE2 and it was high and also I tested my Arachidonic Acid (AA) and it was very high. I saw the word Mast Cells there. I also have MCAS and have become allergic to nearly all foods so have lost 5 stone (31.75Kg) in weight.

    If this is related to ME or Lyme disease or both, I have no idea.
     
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  4. adelheid55

    adelheid55 Senior Member

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    I think it's important for doctors to be enthusiastic. How will you proceed without enthusiasm? Trial and error...
    And it's really great that Dr. de Meirleir ist still enthusiastic after so many years and so many patients.
    There are not many doctors in Europe who treat ME/CFS patients
     
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  5. halcyon

    halcyon Senior Member

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    I've been worried about PGE2 as well recently, but I'm really not sure it's a problem. There is a controlled trial with high dose EFAs that showed clear benefit, and personally the times I've improved the most have been when I've been taking high dose EFAs.
     
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    With respect, the H2S Urine test worked for me, I tested for it.

    The experimental assay claims the more darker the urine, the more H2S you have in your body which implies bacterial overgrowth. I got multiple test kits. Mine is the worst result of all family members and I am the most severely affected (the test kit doesn't have bias).

    Is it validated? No. It's just experimental, an 'idea', but his ideas work at least for me.
    From ideas you dig deeper.

    KDM claims the H2S comes from bacteria in your stomach, the wrong type.
    So I tested for that and he's correct. And he claims this can cause things like D-Lactate to go very high. So I tested for that and he's correct.

    Without the DIY urine test, I'd never now realise this idea of stomach bacteria in ME is really a 'thing'. I am glad I used the urine test as it made me explore other avenues I had no idea of.
     
    Last edited: Mar 27, 2017
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  7. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi there.

    I found some LPS and CFS research that might possibly interest you and others.

    2016
    2013
    2007:
    2005:
    2001:
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Sorry for my confusion but is PGE2, the same as prostaglandins which are elevated in MCAS (or at least they were for me) or is this something different?
     
  9. alex3619

    alex3619 Senior Member

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    Hi have short term improvement on EFAs but long term decline. High AA is probably from a diet high in polyunsaturated fat, or from lots of animal sources high in AA such. High AA is not itself a problem unless its being released to make hormones in too high an amount.
     
  10. alex3619

    alex3619 Senior Member

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    PG = prostaglandin, E is a type, and 2 refers to the arachiconate synthesis path, there are two others named 1 and 3. Path 3 does come from omega 3 fats, but path 1 is a side branch of polyunsaturates.

    PGE2 is an inflammatory prostaglandin that is implicated in a lot of things. I think it has a little to do with mast cells but I am not sure if its a major player. I think its PGD2 that is important in mast cells. Maybe somebody who follows mast cell research can comment. You can see mast cells are listed under PGD2 in the diagram I posted above.
     
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  11. alex3619

    alex3619 Senior Member

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    I started writing a blog on LPS and ME some years back but my temporary brain improvement ended and so did my technical blogs. LPS is one interesting candidate. If its high in blood you only have two choices, bacterial infection (even if undetected) or translocation. Its important to note that bacteria are not what is being translocated for the most part, that leads to sepsis, but their cell surface products, including the superantigen LPS or lipopolysaccharide.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Thank you for clarifying and I appreciate it!
     
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  13. justy

    justy Senior Member

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    No, its a different one, PGD2 I think....
     
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  14. ryan31337

    ryan31337 Senior Member

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    24hr urine collection for PGD2 is indeed a test for MCAS, championed by Dr Afrin and others I believe. Like most its contentious, notoriously difficult to do properly and very expensive...
     
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  15. Daffodil

    Daffodil Senior Member

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    I just found out there are no publications in the works right now
     
  16. Thinktank

    Thinktank Senior Member

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    Wouldn't it be better to increase PGE1 and PGE3 to offset PGE2? Like you mentioned, it's critical for normal function.
    But then, aren't all PGE series actually inflammatory? One less than the other.
     
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  17. Snow Leopard

    Snow Leopard Hibernating

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    Yeah, many of us have heard all this before.

    I trust data before hype...
     
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  18. Thinktank

    Thinktank Senior Member

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    I like the fact that he's so devoted to our cause, but we were already told a few times in the past that "the" cause of ME was found, which turned out not to be so.
    First it was XMRV, then H2S, then it was chronic lyme, now it's something in the gut.

    This time i need to see it validated and proven before i get enthusiastic.
     
  19. Dechi

    Dechi Senior Member

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    @Thinktank Dr Hyde has been saying it's in the gut for 30 years. This is not a new thing. He diagnoses his patients with ME by doing 2 tests (apart from the patient having a specific history) : SPECT scan that must show cerebral hypoperfusion and gastric biopsy which must reveal the presence of enterovirus or parvovirus.

    https://liberationislife.files.wordpress.com/2017/03/definitionofme_nrf_print.pdf
     
  20. trishrhymes

    trishrhymes Senior Member

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    It seems to me possible that by using these 2 specific tests, Dr Hyde may be diagnosing correctly a subset of ME sufferers. It also seems possible to me that there may be other people who do not meet these specific criteria, but still have Internationally defined ME/CFS. For example there may be other viruses or other infectious agents that can set off and/or maintain ME symptoms.

    I have not looked in depth into Dr Hyde's work - I have glanced through the paper you link to, which looks impressive - has he published any studies on this that show, for example that a very high proportion of ME sufferers meet these criteria, and also that healthy controls and people with other fatigue conditions do not?

    This is not a criticism of Dr Hyde - I am genuinely both ignorant and interested.
     
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