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post-lyme treatment with KDM

Discussion in 'Lyme Disease and Co-Infections' started by dadouv47, May 6, 2016.

  1. dadouv47

    dadouv47 Senior Member

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    Hello,
    Wanted to share my experience, in part because I can't wait to receive my treatment plan, but also if it can help someone and if I can learn about some people who went through the same process and if they got good results ( with KDM or another Doctor).
    I got tuesday my second meeting with KDM, and he told me what was already clear by the results i got from redlabs and armin labs : Lyme disease is what made me sick, but it's now inactive. It created a lot of gut dysfunction, neurotoxines etc etc..
    I'm curious to know if some of you got treated for something similar ( of course every case is different but there are common lines in every CFS patients who got or still have lyme disease) and if some of you got good (or bad) results. Every experience is welcome.

    I will just give the test that showed things ''abnormal'' ( because otherwise the list is too long)

    Borrelia burgdorferi Fully Antigen + 5 SI < 2

    Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) + 3 SI < 2

    Borrelia burgdorferi LFA-1 1 SI < 2

    Ammonia in serumAMMON 5,84 0,28 - 3,03 ratio to
    CD57 Absolute countCD57 55 60,00 - 360,00 cells/µl
    Kynurenic acidKYNA 2,07 0,78 - 1,32 ratio to
    Prostaglandine E2 PGE2-m 5,48 0,30 - 2,06 ratio to
    Soluble CD14sCD14 5991 1430,00 - 2800,00
    sIgAsIgA 3158 510,00 - 2040,00 µg/ml

    In CYTS, IL-8S and MIP-1BETA were also way too high.

    Metagenomics stool analyses report showed some ''unusual'' response. Most important probably is that it showed that range firmicutes/Bacteroides was way too low (8,92%) and grant+ also way too low (9,81)

    Sorry if it's too long, or not clear enough ( couldn't find how to c/c my results).
    I read a lot here about patients getting treated by KDM having some worsening first months of treatment. KDM said to me on tuesday that it's not true anymore, that they know now more ''than 5 years ago''. I don't really know if it is true or not. Also saw a lot of his patients still struggling during years. He was saying with a lot of confidence that health condition was going to be really better one year after treatment ( 80-85% of prior health, and he said that before having my results).
    Anyway, thank you for reading and would be happy if someone can share their experience and thoughts ;)
    Regards
    David
     
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  2. Valentijn

    Valentijn Senior Member

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    If there is a Lyme infection, killing it will result in the spirochetes releasing endotoxins which are known to trigger a Jarisch-Herxheimer (herx) reaction. So I had daily fevers and hypotension for several hours most days when I was on IV antibiotics, and the first year or so of oral antibiotics. But also improvements regarding pain and cognitive function.

    I'm going to be off antibiotics for at least a month starting tomorrow, due to scheduling issues and vacation plans. Previously when off the antibiotics for a week or two, I would see improvement in ME symptoms, so I'm curious to see what happens with this longer break.
     
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  3. dadouv47

    dadouv47 Senior Member

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    thanks for answering!
    In my case, Lyme is inactive now and KDM told me he will just give me phytotherapy to maintain lyme inactive. For the rest of course i'm waiting for which antibiotics he will give me...
    Hope u will feel better (despite Herxheimer reactions).
    Regards
    David
     
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  4. dadouv47

    dadouv47 Senior Member

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    Hello,
    FINALLY the letter came with my treatment plan. Don't know if it will interest someone, but thats it (it includes both rifaximin and Isoprisonine):

    Also will have to change a bit my diet. High antibody levels of Chicken egg white and moderate to chicken egg yolk and sugar cane. But it could be worse...

    Happy to finally know what my treatment will be ( hope antibiotics will arrive as soon as possible, really weird they don't have it in Belgium) and happy to finally start a ''real'' treatment ( not only benzos and antidepressants)
    A bit afraid of course, and I know it's going to be long, but optimistic.

    Regards,
    David
     
    Last edited by a moderator: May 29, 2016
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  5. Mel9

    Mel9 Senior Member

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    I really hope the antibiotics work for you! Two weeks ago My new Lyme doctor prescribed Cefuroxime (two 250mg, twice a day) on top of my Clarithromycin (I have been taking for 12 months). I am pleased to say I am feeling unbeleivably better. It is definitely working because I am starting to feel human again after 3 years of pain and malaise. I still get PEM when I do any exercise but feel much better between the bouts. Good luck
     
    Last edited by a moderator: May 29, 2016
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  6. dadouv47

    dadouv47 Senior Member

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    Thank you @Mel9 for you support! Good to know that you are recovering well! Keep fighting ;)
     
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  7. Marc_NL

    Marc_NL Senior Member

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    Hi, now I see your thread here so I'll post my results here too:

    Redlabs
    AMMON Ammonia in serum 7,76 (0,28 - 3,03 ratio to normal median)
    KYNA Kynurenic acid 1,43 (0,78 - 1,32 ratio to normal median)
    sCD14 Soluble CD14 4279 (1430 - 2800 ratio to normal median)

    IL-8S IL-8 serum 193 (0,00 - 15,00 pg/mL)
    MCP1 MCP1 191 (0,00 - 165,00 pg/mL)

    SeroYERSIgG Yersinia serology IgG - positive

    Redlabs
    slgA 17722 (510 - 2040)

    Arminlabs
    Borrelia burgdorferi Fully Antigen 7 (<2)
    Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) 3 (<2)

    Blood
    Triglyceriden 163 (<150)
    1,25-di-OH-vitamine D3 75,6 (20 - 75)

    High neurotoxines in urine

    Extremely high percentage Clostridium IV 48,31

    CD57 67 (60-360)
    Although this is in range, KDM said it was low

    So a lot looks more or less the same, just a little bit different treatment:
    - Amoxiclav / Rifaximin / Bififlor
    - HydroxoB12
    - Mesalazine
    - Lactoferrin Complex
    - Liposomal L-Glutathion
    - Quercumin
    - 5HTP
    - Samento/Banderol/Cumanda
    - lots of water

    Let's see how it goes, I'm still not sure when I will exactly start.
     
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  8. Thinktank

    Thinktank Senior Member

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    Interesting treatment plan, seeing you have elevated ammonia, gut inflammation (elevated secretory IgA) and dysbiosis you might respond well to the rifaximin.
     
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  9. Thinktank

    Thinktank Senior Member

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    @dadouv47, what is the Isoprisonine? I've never heard of it and google only shows a few results.
     
  10. dadouv47

    dadouv47 Senior Member

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    I hope you are right and that rifaximin will help me ;)

    Isoprinosine is an antiviral. From what i read, Its supposed to stimulate lymphocites B & T, helping to stimulate activity macrophages ( not sure if right word in english , sorry if it isn't the case). Well from what I read is really to help boosting my immunity system by increasing lymphocites stimulation. I don't know anything more about it, sorry!
    Regards!
    David
     
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  11. dadouv47

    dadouv47 Senior Member

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    hehe feel free to use ''my'' thread as you want. The all point was to share experiences, getting advises and trying to help ;)
    We have indeed very similar results and treatment plan. @sorin will also start a really similar treatment from KDM and his results were almost the same as mine (which some more co infections). That's also why probably u are starting with amoxiclav and i'm not ( I had +5 +3 and 1 on lyme), so KDM thinks my main problem is really the intestinal disbiose and all neurotoxines (and others) in consequence coming from it. But that's just my feeling, don't wanna play the doctor here ( because already met so many bad real doctors and bad informations are dangerous :p)

    Anyway, feel free to post any question if u have some doubts. I wish you the best of luck! Let's fight ;)
     
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  12. justy

    justy Donate Advocate Demonstrate

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    I'm not sure why he says your Lyme is inactive - it looks to me like your lyme test is positive. did you already have treatment for Lyme - did you have any co infections show up?
     
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  13. dadouv47

    dadouv47 Senior Member

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    No co infections. I really don't know why he's saying lyme is inactive. I should have asked him, but I wasn't prepared to ask this question ( because i thought it was ''active'') and as many know, KDM is not a ''talker''.
    My interpretation ( but it could be really wrong) is that my scores from lyme are relatively low. In the conclusion that came with the letter he said ''On the basis of anamnesis, examination and history of disease from this patient, we think the diagnostic is Late stage lyme disease (according to ILADS) or Post-lyme disease (according to IDSA)'' (Then many other things about my other problems...)

    But I think the main point is that I think my scores from lyme and others results are showing that Lyme is probably still there but not really the main issue anymore ( If i'm understanding well). Some could say it's late stage lyme or post-lyme, he uses the term '' inactive'' to me because I think he thinks it's post lyme.
    But he literally said to me ''Lyme is inactive now''. ''We will use phytotherapy to maintain it inactive''.

    Sorry for not being as clear as it should be. Things are pretty unclear to me too :)
     
    Last edited: May 26, 2016
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  14. justy

    justy Donate Advocate Demonstrate

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    That's fair enough - still the low levels don't show if it is active or inactive - it amy have been on the basis of other test results. My LTT was negative, but I have a clinical dx and co infections... good luck!
     
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  15. sorin

    sorin Senior Member

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    I got the same diagnostic, late stage Lyme with systemic consequences, herpes viruses reactivated and intestinal dysbiosis with overgrowth of anaerobes. It looks like the Lyme diagnostic was put on the ELISPOT tests done at Armin Labs which were positive.
    Borrelia burgdorferi Fully Antigen + 9 SI < 2
    Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) + 11 SI < 2
    Borrelia burgdorferi LFA-1 + 3 SI <2
    But the Borelia IgG and Borelia IgM were negative. So, isn't this contradictory? :confused:
     
  16. Theodore

    Theodore Senior Member

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    I am sorry but how does he know that your case is a late stage?
     
  17. sorin

    sorin Senior Member

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    I do not know, I can just guess that is because of my normal CD57, the presence of co-infections CMV, EBV and because of the very high soluble CD14?!?
     
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  18. dadouv47

    dadouv47 Senior Member

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    If what I read is correct, after some years of illness (they say after 4 months actually, could be a bit less or more but whatever), you are ''automatically'' considered in late stage lyme. First stage is 1 to 4 weeks after the bite; stage II 1 to 4 weeks and then ''late stage lyme'' (thats at least the guidelines from ''common science'')

    What I'm unable to answer is when you can see that Lyme is inactive.
     
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  19. Theodore

    Theodore Senior Member

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    You think that during late stage, CD57 increases and viruses pop-up? How much is yours BTW? I can't find it, sorry....
     
  20. sorin

    sorin Senior Member

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    CD57 130
    sCD14 9544
    IL 8S 140
     
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