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In Belgium to see KDM

Discussion in 'ME/CFS Doctors' started by szenn, Jul 15, 2013.

  1. alexk201

    alexk201

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    Wow, KDM says that Benzos are not addictive? Well, let me tell you this much. I took klonopin for about a year. When I tried to come off I almost died....literally. It took me about 7 months to get off plus untold suffering. I strongly advise against taking any benzo long term , meaning for more than a couple of weeks.
  2. Clodomir

    Clodomir In hibernation mood

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    Belgium
    Hi Alex,

    KDM don't say that benzo is not addictive: he give me some klonopine but warning me not to take more than 20 drops ( he gave drops only for me) a day because otherwise it will be addictive.
    And I take 10 to 15 drops each day depending how I feel. But during this summer holiday, i took only 5...
    Now with my abx iv, i take 15, but when it will be finish, i will disminish.

    Have a nice day

    Clodomir
  3. szenn

    szenn

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    He didn't say that to me. He said the drops were not addictive. but I never took them in any case. I try to minimise the drugs I take.
  4. alexk201

    alexk201

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    NJ
  5. Vojta

    Vojta

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    Well, this is my update.

    In the beginning of December KDM told me to stop ABX (the last one was ketek) and valaciclovir. I was on abx since April I guess and on valaciclovir for more than year.
    As usual he told me almost nothing. He started me on herbal protocol Samento + Banderol + Cumanda. I guess this is his new thing for people not improving on antibiotics. I asked if I could benefit from IV treatment instead and he answered "Maybe".

    After 10 days without any meds I returned from Brussels and caught something like flu with fever, not usual for me, (bacterial/ebv relaps? who knows). Ironically I went through Cymbalta withdrawal at the same time...

    From that point I´m generally worse. Definitely more inflammation. I´m sure that valaciclovir helped keeping EBV supressed (which was active for years) because after almost year my ebv antibodies went negative or down.
    I feel like I´m at the square one again:(

    I´m 5 days in the Samento + Cumanda treatment. Nothing so far. Is anyone else taking it? Any experience?

    szenn: How is your daughter doing on the herbal protocol?
  6. Lymelight

    Lymelight

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    Brussels, Belgium
    Thanks and Happy New Year to you !

    I'm on Clarithromycine and Doxycycline for 3 months now. My body seems to tolerate those abx quite well. During the first 6 weeks I had a worsening of my symptoms but since then I'm more or less back to where I was before starting (difficult to say if it is better or not ..).
    I have the impression my brain is clearer and I can concentrate for longer periods.

    I will get my new CD57 and inflammation panel test results end of the month. Normally I should get about 6 months abx and then switch to herbal protocol. Will see.

    Hope to get rid of those bugs in 2014 ;-)
  7. Thinktank

    Thinktank Senior Member

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    Anyone here on IV abx? I will be starting treatment in 2 weeks... for a 12-weeks period and then reevaluate and retest.
  8. Lymelight

    Lymelight

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    Brussels, Belgium
    Well after 2 months abx my CD57 count dropped from 74 to 44 ...
    Wasn't it supposed to raise instead ?
  9. Vojta

    Vojta

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    Mine CD57 went down first too but KDM explained that its common that in the beginning of tretmant it drops before it goes up.
    It is probably because CD57 is moving back from bloodstream inside cells. I don´t remember if I heard this from KDM or read it in german lyme article or here in forum.
    merylg and Lymelight like this.
  10. scarlet56

    scarlet56

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    Does the test for IL-1betaS mean you could have cancer...mine is 5 range is 0,00 - 3,00 pg/ml Can someone explain this test to me???
  11. Vojta

    Vojta

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    Mine was:
    1,2 (2/2011)
    0,1 (11/2011)
    8 (5/2013)
    802 (8/2013)
    in same range

    No one told me anything about it. But it seems it plays role in inflamation (no need to involve cancer). In my case I think that big spike was because of new co-infection which is causing me chronic inflamation of prostate.
  12. scarlet56

    scarlet56

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    Wow, I guess i worry because I had breast cancer in 2000! Thanks for the info!
  13. snowathlete

    snowathlete

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    I'm currently on Rifampin and Clarithromycin, been on abx since May last year. No improvement, worse than pre-treatment. Though things have been complicated by my getting ulcerative colitis in September and I am only now, hopefully, starting to get it under control. Till then it's hard to gauge if my treatment is working or not, but I'm not convinced it is really. I saw KDM in Dec and he told me it takes time.
    Hanna, Valentijn and merylg like this.
  14. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania
    I will not bother then.

    Thanks.
  15. Xhale19991

    Xhale19991

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    Has KDM helped anyone get much better from this disease?
    merylg likes this.
  16. Clodomir

    Clodomir In hibernation mood

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    Belgium
    Hi,

    I feel some improvment. But it goes slowly. I am quite happy and confident.
    But that is my case...

    Have a good day

    Clodomir
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm about 30% better. Some other patients I know have had more improvement and some less.

    Best,
    Sushi
  18. szenn

    szenn

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    London
    how are you now snow?
  19. szenn

    szenn

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    My daughter seems better.
    It is hard to say with me. I have been on treatment nearly 6 mths now. Some days are good others not so. sleep is still disrupted but i do manage more than before. feet burning less. hands till hurt periodically . KDM was very vague when i last saw him
  20. szenn

    szenn

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    she is doing very well indeed

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