The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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About to start KDM treatment

Discussion in 'General ME/CFS Discussion' started by trickthefox, Jan 7, 2016.

  1. trickthefox

    trickthefox Senior Member

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    Brighton
    Hi guys
    im about to start treatment through kDM - I am lyme positive with markers of leaky gut and dysbiosis

    the treatment is as follows

    pulsed Clindamycin 1 week a month followed by vsl3 probiotics, b12 injections, mesalazine for gut inflamation, curcumin, LDN

    I am really nervous as my health has stabalised after being bedbound and feeling like i was being tortured for 6 months last year. I'd like to know if anyone has followed a simmilar treatment and want to know what to expect?
     
    Theodore likes this.
  2. Starlight

    Starlight Senior Member

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    Hi Trickthefox. I'm afraid I can't help as I haven't started any regime yet but I've recently been diagnosed with Chlamydia Pnuemonia and in the same position as you, very nervous about what toll treatment might take.Mine will be continuous antibiotics. After many years bedridden I'm finally able to get downstairs, although no further than the couch, I'm,so afraid of messing it up. I hope you'll get some answers as I'd like to read them too. Good luck!
    Do you mind if I ask where you buy the probiotics? I've been looking for them but can't find them outside the US. Will you take them with the antibiotic ?
     
  3. Valentijn

    Valentijn Senior Member

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    They have a new name now in Europe, Vivomixx. They can be ordered online at http://shop.vivomixx.eu/en/
     
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  4. Thinktank

    Thinktank Senior Member

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    Starlight and Valentijn like this.
  5. Valentijn

    Valentijn Senior Member

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    A bit more expensive there, though no shipping fees? I don't see anything indicating that they ship with ice packs, which might be a bad idea, especially in warmer weather.
     
  6. slysaint

    slysaint Senior Member

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    I tried this early on in my ME history. I've only recently been investigating all the medication I was previously given and one of the anti-biotics was ciprofloxacin one of a group called fluoroquinolones. These are very dangerous drugs. Please be sure and research whatever you're prescribed.
     
    Starlight likes this.
  7. Esther12

    Esther12 Senior Member

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    I'm wary about some of the KDM stuff I read about, and would encourage you to look critically at the evidence used to support treatment recommendations rather than just trusting that he knows what he's doing. Good to seek second opinions too. Good luck.
     
    Sidereal and Blue like this.
  8. bertiedog

    bertiedog Senior Member

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    South East England, UK
    I would just like to add a bit of balance here as I have taken a few weekly courses of ciproflaxacin without any problems apart from a slight increase in GI symptoms but all antibiotics tend to do that with me.

    Pam
     
    Starlight likes this.
  9. trickthefox

    trickthefox Senior Member

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    Brighton
    I appriciate the info guys, i have done extensive research as always, i had my b12 injections today, no problem, not really sure if there was a difference, maybe i feel a bit more clear headed its hard to tell

    turns out clindamycin is the best option for the bacteria I have based on the studies I've read, so im going to go forward with the course, managed to get VSL3 through my NHS doctor!

    Has anyone been taking the mesalazine?
     
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  10. Thinktank

    Thinktank Senior Member

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    I have been diagnosed with a Crohn's-like disease a few years ago and took mesalazine for it. It did help a bit with the inflammation. It's worth a shot imo.
     
    Starlight likes this.
  11. frujo

    frujo

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    Hello, I am new here. :) How is it going now trickthefox? I have an appointment with KDM in late May, but I am not completely sure about going.
     
  12. trickthefox

    trickthefox Senior Member

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    hi frujo i found the appointment invaluable beause it was KDM who diagnosed me with lyme, i am going back in april to see if any of the treatments have helped. The B vitamin injections have helped my energy,

    However I am considering switching Drs to Dr Jemsek in washington who treats lyme. KDMs communication and staff just dont work for me. They might work for someone who doesnt want communication with their doctor once home, but for me i found it too difficult, they would take weeks to answer emails, never pick up the phone, and there was one point where i was left bedbound by the treatment, i didnt get through to KDM for weeks, then all he said on the phone was 'stop taking it' i told him id stopped, and he said 'good' the call lasted about a minute and they charged me 60 euros for the pleasure. Not meaning to completley badmouth it, as they do very comprehensive testing etc. and filled in a lot of blanks for me in temrs of what i should be treating, its just with my temerement i want a dr whos a little more on my case
     
  13. frujo

    frujo

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    I completely understand that you reacted on this! I also think it´s very annoying that they don't respond quicker.

    I have now had a change of heart. I am instead going for Rituximab treatment in Norway. I am really unsure about long term treatment of abx and also about the lyme thread in general. I have still not checked for lyme with the Elispot test. I am really unsure what to think about it. Today there was a big Netherland study that concluded that long term abx didn´t help for lyme. There are so many studies on both sides!

    Have you considered Rituximab?
     
    ErdemX likes this.
  14. ErdemX

    ErdemX Senior Member

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    Istanbul
    Hi frujo,

    I'm also a patient of KDM for 6 months. His priority is the bacteria shift in the gut and usually wants to correct this before anything else. That is not only what he has been trying to do with me, also with many other recent patients that I speak to. I think first he wants to stop the immune system being overactive/aggressive by correcting the gut biome. So if you visit him, maybe you shouldn't expect to start a classic abx therapy for Lyme, even if he finds Borrelia in your labs. But also, this treatment is somewhat slow. He is open to suggestions, but not very open to a personal patient/doctor relationship.

    What do you think about the potential dangers of Rituximab? I'm confused.. Do you know people who recently went that way, and how did they respond?

    Please do inform us in the future :)
     
    Theodore likes this.

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