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My last consultation with Dr. Kenny De Meirleir

Discussion in 'ME/CFS Doctors' started by serg1942, Mar 30, 2014.

  1. serg1942

    serg1942 Senior Member

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    Hi everybody,

    I'm going to briefly explain how my consultation on last thursday with Dr. De Meirleir went, in case it might be worthwhile to some of you.


    After 11 months on ABX for Lyme, he told me to stop them and put me on antibiotic herbs (samento, cumanda and banderol), on last december. Samento put me in bed the very first day, so I decided to stop them, in order to be able to take my exams in January. Just after finishing them I started the herbal protocol, and the Herx was so hard that I spent the last two month bedridden.


    I explained this to my doctor, and he told me to stop the herbal protocol, and go back to oral antibiotics. I asked about the Intravenous ABX and he told me it would be a good idea to take them, so if I am able to get the money, I'll stay in Brussels for 3 months, since august, in order to have the I.V. ABX done, 3-5 days weekly.


    I asked him about the poster Lombardi presented on the IACFS/ME conference, on HERVs as a marker for CFS, and on the inhibition of specific Toll Like Receptors of the macrophages of patients with CFS as a possible way by which some pathogens or toxins could trigger the expression of these HERVs--Note that there's evidence on how EBV, HHV-6 or Borrelia, wreck the immune system by attaching to these receptors. He told me there was research underway on this subject that possibly could be used for CFS in a couple of years.
    I asked him for some drugs that have come up recently as possible treatments, such as IFN, peptide T and others. We didn't have much time to discuss this in deep, but it seemed he was familiar with them and thought they were not the "answer". I also asked him for Ibudilast and told me he would look in to it.


    So this is more or less it. Now that I have switched to ABX, I hope to recover enough to take some exams in summer, and if possible, maybe do IVs in Brussels afterwards...


    Hope it helps,


    Best!


    Sergio
     
  2. snowathlete

    snowathlete

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    thanks for the update sergio. i hope you recover more and do well on iv if you do that!
     
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  3. Martial

    Martial Senior Member

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    You herxed harder on the herbal protocol? Wow don't hear that too often usually traditional antibiotics and IV mess people up the most reaction wise.. If you ever went the herbal route again I would highly suggest Dr. Buhners protocol it is a much gentler approach of stopping the cytokine activity, modulating the immune system, protecting the body and collagen support, and as a fourth using a bit more direct anti bacterial spectrum herbs though less herx reactive, not nearly as potent as samento, that stuff messed me up hard too LoL.

    I hope you are well on your way to recovery Sergio! Hopefully treating the lyme will also clear up the CFS for you and you can get on with living a full life again :D
     
    merylg likes this.
  4. justy

    justy Senior Member

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    Thanks for the update Sergio, I hope you continue to be well enough to resume your studies and take those exams.
    Might you specialise in M.E by any chance? we could do with some younger Doctors coming up!

    I have my first apt with KDM in May.
     
  5. Valentijn

    Valentijn Activity Level: 3

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    Which days? I'm there on the 6th for a followup appointment.
     
  6. justy

    justy Senior Member

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    what a shame will miss you - there on 12th/13th.
     
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  7. maryb

    maryb iherb code TAK122

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    @serg1942
    thanks for the update, hope the a/bx work and you get through your exams okay this summer. Just wanted to say when I was first prescribed Samento many years ago by And-y Wright the instructions said to start with one drop in a full glass of water - it is powerful stuff and that was all I could tolerate for the first week, is it possible you started too high a dose Sergio? AW takes it every day if he stops the symptoms come back.
     
  8. serg1942

    serg1942 Senior Member

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    Thank you guys for the good wishes!
    Hi @Martial, thanks for the advice. I didn't know Dr. Buhners uses other herbs... Good to know about it, in case oral ABX and maybe also IVs don't fully work... Ah! Definitely! Yes! these herbs gave me much more Herx than oral ABX... And the same is happening to other fellows, much to my surprise. An explanation could be that the herbs are less specific and also kill other secondary and opportunistic infections, therefore creating much more Herx...


    Hi @justy, I hope your consultation goes very well! and yeap, it is my only goal in life, to finish medicine in order to treat ME/CFS and related conditions (it couldn't be other way!). I wished by the time I finish, I wouldn't have to "just" treat it, but to cure it... I would be very happy treating our colds! ;)
    Hi @maryb, actually I have read several other regimes with these herbs, and KDM's protocol is the less aggressive of them all... Still, these herbs hit me very hardly...




    Best!


    Sergio
     
  9. juniemarie

    juniemarie Senior Member

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    I had the same experience as Sergio on Buhner protocol for Lyme, CPN & Babesia The herx. was so horrible I had to stop. People think because they are herbs they aren't as powerful and won't cause as strong a here as antibiotics, but they sure do and then some.
    I am not sure why….but maybe it has to do with various bugs and viruses being somewhat accustomed to fight against antibiotics and the old time antibiotics and antivirals have not been really used in years and have more potency??? Dunno? Not smart enough to understand the why.
     
    serg1942 likes this.
  10. justy

    justy Senior Member

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    @serg1942 that's great news! what a star you are... I hope I will never have to come and see you for M.E treatment - I hope to be better before then.

    all the best
    Justy.
     
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  11. PDXhausted

    PDXhausted Senior Member

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    When you guys mention herxing on samento and other herbs-- what are your symptoms/reactions specifically?

    I guess I'm wondering how you can tell it is a herx rather than a reaction to the herbs... From what I've read about samento/cats claw, it is quite a powerful herb with many systemic actions. Since it is not a drug specifically targeted towards a pathogen, it seems like any reactions to it could be due to a variety of reasons? Do you consider it a herx if it specifically exacerbates your Lyme symptoms, or how can you tell?

    Plus I'd be really interested to hear about anyone who has seen improvement (or didn't see improvement) after trying samento, as I'm just starting out on a tiny dose of it the last week or so. Had a weird bout of adrenaline/insomnia last night, but not sure if that was due to the samento or other reasons.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm using a mixture, Mc Bar 1, for Bartonella--it has cat's claw in it. I only tolerate a tiny dose, but I have seen improvement in brain fog.

    Sushi
     
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  13. maryb

    maryb iherb code TAK122

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    @PDXhausted
    I started taking a few drops of Samento last week-end - I noticed a difference when I got up to 5drops a day, the crawling sensation in my skin and the burning feelings I have were substantially reduced, I've stopped it now as I'm having some blood tests next week but will go back on it as soon as I've had these. take it slowly.
     
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  14. Martial

    Martial Senior Member

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    Wow had no idea so many people are having major herxes to herbs that par with I.V. that is intense! I think for myself it has not been as notable because I am on a really good methylation protocol started around the same time I switched to herbal treatment. Since being on methylation treatment I don't really herx much anymore and over all my symptoms are much lighter, though there is a really increased need for sleep and a few de tox type things... Is everyone here treating lyme using some kind of methylation treatment? I find this is actually hugely necessary given the toxic load the bacteria constantly dumps when it dies. I went from severe herxing and being off the handle with treatment reactions to now feeling baseline okay, with normal ups and downs of recovery.
     
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  15. juniemarie

    juniemarie Senior Member

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    @Martial I think you have hit on what might be a key element. The first time I was on Buhner's lyme protocol I had a methylation protocol in place first, and the herx was manageable. Then my life fell apart and I had to start from scratch again and instead of starting with the methylation first I started with the lyme herbals first and all hell broke loose.
    I am not very knowledgable about just what all the methylation protocol does but it must help with detoxing and moving out bad stuff because without it no amount of epsom salt baths, charcoal etc was able to help the bad herx's I had the second time around.
     
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  16. xrunner

    xrunner Senior Member

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    @PDXhausted
    The only way you can tell for sure is to compare your situation pre and post-treatment.
    If a few days after stopping using that herb (abx and anything else supposed to reduce microbes load) your health is definitely better that feeling "worse during treatment was indeed a herx.

    With Lyme disease there's also a rule of thumb (Burrascano wrote about it in his guidelines) that it usually takes three days for bacterial killing to get under way to possibly cause herxing. Anything happening earlier than that it's most likely something else. And my own experience always was like that when I had a herx reaction.

    Finally, I personally have never experienced a herx with any of the many herbs or combinations I have tried over the years. Only with abx and Gcmaf gave me herxes and by that I mean more fatigue and night sweats.

    I have used Samento (and Banderol) only for a few months but noticed no change. I have also used Cat's Claw and that made me feel better straight away with no herx reactions of any sort.
    I am aware of research that shows it seem to work against Borrelia but that was in vitro and I now doubt that in-vivo it actually kills Borrelia spirochetes.
    If it works, it probably does so as described in Buhner's book through shutting down certain inflammatory pathways (that's what I experienced) and increasing the activity of natural killer cells, especially CD57.

    Regarding the adrenaline, it can happen with Samento and if that's the case you might want to try Cat's Claw. The whole herb, in fact, acts more as a relaxant whilst having all other properties of Samento.
     
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  17. PDXhausted

    PDXhausted Senior Member

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    @xrunner That is interesting that samento and cat's claw affected you differently. I'll keep that in mind as I experiment on myself.
     

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