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My trip to see Professor De Meirleir (long post)

Discussion in 'ME/CFS Doctors' started by justy, May 17, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't think he says this definitely--I think he relates many factors to our brain problems

    Sushi
    SOC, merylg and heapsreal like this.
  2. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    How do you get lactic acid in the brain? And who is this best in the world doctor? KDM? Just curious.
  3. justy

    justy Senior Member

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    Thanks @heapsreal for your input here.

    A big problem for me - and it seems plenty of other M.E patients is their inability to tolerate even tiny doses of meds. I feel I don't have the luxury of trial and error.

    An SSRI messed me up so bad 6 years ago and I am still not recovered from it - I will never touch another drug that does things to the brain unless I have clear proof and evidence of its need.

    I have also tried other hormone things - Thyroid meds, both synthetic and 'natural'. The first had no good effect and then gave me hyper symptoms. The second felt great for 3 weeks and then I had a massive crash (last September) that I have not gone back to baseline from (yet?). Seems my adrenals cant handle it.

    Supplementing steroids - messed my immune system up so bad I was afraid to be with another human being.

    DHEA - VERY low - cant tolerate at all, even at 2-5mg every other day makes me raging and weepy.

    Low digestive enzymes - supplementing with enzymes makes me so nauseous I cant eat.

    Hypochloridia - Betaine Hcl gives me heartburn

    Paleo diet - makes me very sick

    B12 deficiency - tried injections, helped a bit but sensitive to B12, so could only take tiny amounts.

    CO Q10 deficiency - Co Q 10 makes me wired.

    And so it goes on... sometimes I wonder why see another doctor if I wont be able to tolerate their treatments? but I guess i'm hoping they will uncover something, or a number of somethings which explains why so many of my systems are bust, and why I cant tolerate meds etc. I believe most of the above problems are downstream of some larger issue - Immune? infection? pituitary? (I have had two post partum haemorrhages and was hit by a car at 19)

    I just need a doctr who is clever and insightful enough to not give up on me when I don't respond the way they expect.

    KDM said the best thing to me, which on the day made me very emotional and I keep thinking about it as it keeps me going. He said - I don't care what you have got, or what name it is called or not called. I will look at the whole picture, at all of you, and I will do my very best to help you, no matter what we find.
    AndyPandy, xchocoholic, Tito and 11 others like this.
  4. girlinthesnow

    girlinthesnow Senior Member

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    Compassion is so important. It sounds like you're not a Lymie but I trust KDM and think you're probably in the best place to get an answer and more importantly, help. BTW, negative lyme results are not always the definite answer but there are other signs that he will look for ( i.e. obvious signs of vasculitis) and it sounds like those weren't apparent.
    justy likes this.
  5. Daffodil

    Daffodil Senior Member

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    hello justy. what about your bartonella results?
  6. justy

    justy Senior Member

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    This is the only result I have back so far...not sure when the others will come.
  7. Helen

    Helen Senior Member

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    Justy, I hade the same result from Infectolab from the same tests in November. A doctor then gave me oral doxycycline for two 6 weeks rounds with a 2 weeks break based on my symptoms. I got much better from the abx and but after a 3 weeks break I crashed with severe heart problems too. . Then I had another IgG and IgM test and the numbers had gone from IgG 240 to 1057 and the IgM from negative to 25. It could have been the abx that activated the IgG and IgM antibodies. At last I got the diagnose confirmed. I just wanted to tell you my story as your results may change after abx.
    Clodomir, merylg, Sushi and 3 others like this.
  8. Daffodil

    Daffodil Senior Member

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    but can LTT ELISPOT results change after antibiotics? that is a different sort test...
  9. Valentijn

    Valentijn Activity Level: 3

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    Yes, it reflects changes faster than IgG and IgM will.
    merylg and Helen like this.
  10. maryb

    maryb iherb code TAK122

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    @Helen
    glad to hear you got a diagnosis but
    so sorry to hear about your heart, were your heart problems related to the antibiotics?
    Helen likes this.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Later.........o_O

    Sushi
    merylg, Valentijn and justy like this.
  12. Helen

    Helen Senior Member

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    No they were related to the Lyme disease. After just some days or a week on doxycycline the dyspnae, palpitations and pain in the heart were gone- and I had a diagnose! But there is a lot of struggling left ... Thank you for your kind thoughts.
    @Daffodil The point was also that the IgG and IgM could be worth tracking too. And the labtest is much cheaper and possible to get from the GP.
  13. Leachim

    Leachim

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    Regarding the LTT test I think it is common for ME patients to test negative or very weakly positive before treatment has started even if the infection actually is there. There are lots of other indicators that points to borrelia if it's there, and like the rising values in the antibody tests (more antibodies) more T-cells will become activated (which is what LTT measures) when the immune system gets more functional.You shouldn't be worried that KDM won't be able to pin down a lot of the malfunctions in the gut-immune-endocrine-neuro-systems, that is his area of excellence, knowing and developing exactly the test that are of use for our patient group. Not all ”profiles” are as easy to treat, and KDM certainly doesn't succeed in treating all cases, but regarding getting ”readings” of biochemical dysfunction he's really the expert. I'm partially recovered from the treatment, but even without that recovery I would have found it worthwhile to do the testing just to know more about what's going on in my body. (I brought a daughter for testning too, for symptoms I was worried signified ”pre-ME”, of course labeled as psychosomatic by the regular GP – KDM identified gluten intolerance as the culprit, and with diet changes she is now quite healthy, even if her immune system still has a Th2 dominance.)I hope you will tolerate the treatment well, and will see recovery!
    xchocoholic, justy, merylg and 2 others like this.
  14. Valentijn

    Valentijn Activity Level: 3

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    Apparently he's also said that low positive (but still positive) values seem to possibly indicate the US version of Lyme, whereas the European type produces the much higher values.

    My mother and I both have the US type (dozens of tick bites when we lived in Oklahoma), and have positive results at the low range - 2 and 3, with the 2 or higher being positive.
    merylg and Sushi like this.
  15. RML

    RML Senior Member

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    Yes he gave me some kind of explaination like that (didn't catch it all) when I asked why my results were 22,18,1 . I have European lyme, not American which is what was tested for.
    merylg and Valentijn like this.
  16. lnester7

    lnester7 Seven

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    I am courious so if you treat Lyme is the ME gone??? I see a lot of people in this treatment but I am not sure what happens afterwards.
    Tito and merylg like this.
  17. Tito

    Tito Senior Member

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    No
    Nothing happens.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Good things are happening, but yes, those good reports are mostly anecdotal right now.

    Sushi
  19. justy

    justy Senior Member

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    Thanks for taking the time to respond and reassure me, it has really made me feel better about it all. Of course I am still in the 'long wait' for test results which has been harder than I thought it would be.

    Good new about your daughter. I have a daughter who has been ill but has partially recovered with no intervention and another son I have concerns about with as you say perhaps 'pre M.E'. Perhaps one day I will be able to afford to take them for some testing too, but for now money is a big problem.
  20. justy

    justy Senior Member

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    I just phoned the clinic and they have ALL my test results back - the receptionist said she will e mail them to me soon, so feeling super excited/nervous now.

    I don't have my apt with KDM until July 12th so may need to ask on here for what they mean - I am sure I will have no idea.

    P.S. I have my test results and have posted them here.
    Last edited by a moderator: Jun 28, 2014
    merylg, maryb, Sushi and 5 others like this.

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