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In Belgium to see KDM

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

  1. maryb

    maryb iherb code TAK122

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    I think people will continue to do what they think is right for them when posting about their experiences with ME docs, and also how they view what goes on within the BMA (for us in the UK) with regards to this illness, this is an important aspect of it for me.

    I certainly wouldn't ban anyone from saying anything though - its a forum for all.
    Anyway I think this thread has been well and truly de-railed........no more from me.
    SOC, Valentijn, merylg and 1 other person like this.
  2. szenn

    szenn

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    This thread is about Lyme disease and KDM
  3. szenn

    szenn

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    That's a shame. I started this thread so we could all learn about lyme disease and KDM's treatment of it. We need to learn off each other. and pm's are all very well but i would not known about lyme or kdm if i had not seen snow athlete's threads here.
    xchocoholic and Katherine like this.
  4. szenn

    szenn

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    Been on treatment now for nearly seven months. My symptoms in the last week seem to have got worse.
    Is this normal. I am seeing KDM on Tuesday
  5. snowathlete

    snowathlete

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    I don't know, good question. But, after about ten months I've stopped taking the abx. My hand was forced by my continuing weight loss from UC. I need to fix my gut before I go any further. And then I'm going to have to do so with more care for my gut, which might rule abx out.
  6. szenn

    szenn

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    I am sorry to hear that snow, did you never feel better? How are you feeling now? better since being off?

    What has e suggested to you?
    Last edited: Mar 15, 2014
  7. snowathlete

    snowathlete

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    I see him on the 20th so don't know what he'll say yet. I didn't consult him about stopping as it often takes a while to get a response as you know, so thought it would just make sense to wait till the 20th or just make the decision on my own, which is what I did this time.
    I expect he'll want me to restart them in a few weeks but not sure ill be willing to so that. He knows a lot about the gut so hopefully he'll be willing to help me focus there instead. That's definitely where I want to focus.
  8. szenn

    szenn

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    I saw that you are back on Clarithomycin. Did the doctor treat your gut?
  9. szenn

    szenn

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    Hi

    I have been on antibiotics for 11 months and my LLMD has now switched me to a Samento/Banderol regime. I have lyme, chylamydia pneumonia, mycoplasma and suspected Bart ( not a lot then!!) does anyone have experience of these herbs? Do they help with Bart too.

    Any advice greatly appreciated.
  10. xrunner

    xrunner Senior Member

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    Hi @szenn
    I treated Lyme, Bartonella and CPn.
    I have used Samento and Banderol for about 3 months at full dosage but it didn't work for me at all, my mum (Lyme) did not get any results either (but she does well on Cat's Claw).

    I know there are a number of well respected LLMD's around the world that use this protocol. I assume they base their decision on an independent study that Eva Sapi did a few years ago for Lyme where it came out as quite effective against pretty much (if I recall this right) any form of Borrelia, including biofilm formation.
    The study was however in-vitro. Personally I am not convinced the protocol works as well in-vivo.
    Having said that, I think it's worth a shot anyhow.

    Regarding Bartonella and Mycoplasma, if you read Buhner's two books respectively on Lyme and the co-infections, the herbs that seem to work against these two microorganisms are others. I have not tried these specific herbs as antibiotics worked for me.
    Hanna and merylg like this.
  11. Clodomir

    Clodomir In hibernation mood

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    Hi @szenn ,

    I have Lyme. I am on Samento, Banderol and Cumanda (for Bartonella). And for me, it seems to work. I am feeling better, but it will take 3/4 years to be (or try to be) like before... if possible
    I didn't take all the drops in one time: I begin slowly as explain by my doctor.
    I have a lot of herx (mostly fatigue and some pain but less).
    I stopped my ABX IV end of december. so normally, the ABX effects must be "finished". And I still feel better and better (very slowly). Now, I have some projects: going on holiday, meeting people, etc..
    I was bed bounded and now, I can do a few things: prepare a meal, going to shops, etc... One thing a day, not everything together. I have some "relapse" but less and less.
    I am still like an old woman of 90 (I am half of it), but I am full of hope. I already live the worst, so ...
    My husband who is also ill, goes better and is also on burner's protocol.

    For us it works, but it is a very long struggle. 3 month is nothing in my case. I count in years...

    So don't give up, try at least a year and then you will see.

    all the best

    Clodomir
    Hanna and Lymelight like this.

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