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Has anyone actually been cured by KDMs lyme treatment?

Discussion in 'ME/CFS Doctors' started by trickthefox, Jul 19, 2015.

  1. trickthefox

    trickthefox Senior Member

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    Okay, this is a big question for me, mainly because I could theoretically spend the next half a year of my life saving to go and see KDM, and when i do so, due to my symptoms, im pretty certain i will get a diagnosis of Lyme or something simmilar. My problem is this, i know a few people who have seen KDM and got the same diagnosis, who have done antibiotics, and they are still sick, some are worse, some see improvements whilst on the antibiotics, but then keep swapping antibiotics for years, until a different infection shows up which they then treat, and it seems like a never ending cycle. The same also holds true for 90% of the posts that i see on this forum. I am seeing a serious lack of evidence that these problems are resolved, so why spend thousands on them?

    KDM is rated highly on this board, but I am failing to actually see a single case of someone who has reached complete remission from the Lymes treatment.

    Can i please hear from these people who have successfully put lyme into remission and are living happy lives (i know many dont stick around these boards, but surley other people know if they exist?) so that i don't feel like im going to be paying thousands of pounds to possibly follow a health-diminishing course of antibiotics, just because ive ran out of options. If i have to accept that my illness is (for the time being atleast) incurable, then i will do my best to try and accept that, but if i do have a chacne of full recovery from lymes treatment i would follow it through, but emotionally i dont know if i can go through years of expense and failed antibiotics treatment like i see many on here doing :/
     
    Joh, MeSci, Bessie and 14 others like this.
  2. msf

    msf Senior Member

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    Since KDM uses pretty standard ILADS treatments for Lyme, you may be better off asking 'is anyone with Chronic Lyme actually cured by such treatment?'

    Anecdotally, the answer is yes, but I doubt there have been many studies of this, since treating chronic Lyme can take years, and as you suggested, coinfections often complicate matters.
     
    merylg, justy and sarah darwins like this.
  3. trickthefox

    trickthefox Senior Member

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    Anecdotally though, i am seeing very little evidence, from this board, or any others at all that long term antibiotics are curing people. It seems the figure of people who recover late stage lyme (an infection that's been around longer than a year or two) using antibiotics seems to be about 10%, or maybe a few testimonials on websites that are geared at selling lyme protocols which im wary of, but is this just because people aren't reporting a cure?
     
    roller, Bessie, merylg and 3 others like this.
  4. msf

    msf Senior Member

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    Another good point someone made when this question was asked recently is that KDM only started finding Lyme in his patients and treating them for it relatively recently, so if, as some people have reported him saying, it takes 3-4 years for some patients to see significant improvements, then there won't actually be that many KDM patients who have reached this stage (I assume KDM is partly basing his prognosis on reports of other doctor's patients).

    Finally, I'm not sure assuming that he will diagnose you with Lyme is a good way to approach it. I am a patient of his and I haven't been diagnosed with Lyme, but rather with Yersinia, which is also difficult to treat, but there are quite a few case reports in the medical literature of patients whose symptoms resolved themselves on the kind of treatment I am getting.
     
  5. msf

    msf Senior Member

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    Where did you get the 10% from?
     
  6. trickthefox

    trickthefox Senior Member

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    Brighton
    I am just basing the lyme's hypothesis on the fact i've grown up in high risk lyme parts of the UK, and based on some of the neurosymptoms/bonetingles/eye problems/low lymphocytes etc. that ive been experiencing, and the fact that i temporarily improve on Doxy, but you're right its just a hypothesis, but im just trying to be sure that seeing KDM is the right route to take. 10% is just a rough figure of messages that i've seen where someone has reported their particular problem going into remission through long term ABX. I do see lots of cases of people saying they are improved, but i wander if these improvements are sustained or if there is another mechanism at work like the ABX killing off gut bacteria which would also have an immune modulating effect? if i can get back to even 70% functionallity ill take that. Hows your treatment going?
     
    merylg and barbc56 like this.
  7. trickthefox

    trickthefox Senior Member

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    Brighton
    Also i am wary because i bet a whooole multitude of completley healthy people will have antibodies for certain bacteria or infections in their blood because we get exposed to these things on a regular basis, but usually a healthy body would just fight these infections off, so wander if its more an auto-immune issue that allow these infections to flourish, and that we could theoretically kill one infection off with years of abx, but then another will just take hold because of an immunity problem which will leave us relentlessly chasing them? Not to be pessimistic or dismissive, i'm just hoping that someone will post here to prove me wrong so that i can be hopeful about this
     
  8. msf

    msf Senior Member

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    Well, I'm in the middle of it and according to the literature you only see a benefit towards the end, but I'm tolerating it so far.

    I guess you are in the same position as everyone else: do you wait until diagnostics and treatment have improved to the point where there is 100% certainty, or do you take a chance on getting better now?

    There is also the money side of it, which definitely complicates matters - I figure if I recover I can make what I paid for tests and treatment in less than a year, but to know whether that is a better bet than just doing nothing you would have to know what chance you have of getting better and also know what chance you have of getting worse, both with and without treatment.
     
  9. msf

    msf Senior Member

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    Haha, do you want anecdotal evidence or not?

    There is a difference between things like EBV and Lyme - almost everyone has EBV, but the number of people who are seropositive for Lyme is much lower. There was a paper published recently that showed that Lyme can cause immunosuppression.
     
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  10. trickthefox

    trickthefox Senior Member

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    I agree with you, but at this point I have spent thousands doing just that, and the last treatment I did from what is supposidly one of the leading private M.E. treatment hospitals (breakspear hospital) in the UK made my life about 1000 times worse, I went from moderate M.E. to housebound, also i spent thousands on fecal transplants thinking my M.E. issues were gut based and that i would resolve them after getting some healthy bacteria back in there, and my immune system did noooot like that at all. I'm in the same boat, its a catch 22 i have a great ability to make money when im well, im just not there :p There becomes a point where the health gamble becomes a scary prospect, and recently for me it has felt like more nails being added to the coffin, I long for the health i had last year pre-breakspear and even back then i was doing pretty bad. I'm just trying to find some hope to kick me up the ass, and wandering if there are any reports atall from here of people getting remission through ABX?
     
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  11. trickthefox

    trickthefox Senior Member

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    Brighton
    Thanks @msf i was also just shocked at the amount of being being diagnosed with Lyme through KDM, it made me a little sceptical but its encouraging to hear he doesnt find it in everyone
     
    merylg and Kati like this.
  12. msf

    msf Senior Member

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    Sorry to hear you did not get any benefit from Breakspear, I have heard it is expensive too. I think KDM is quite a long way from Breakspear in terms of the way he practices medicine, but that of course is not a guarantee that you will get better/you won't get worse. If you are looking for stats, a recent Norwegian study of ME patients included a small sample of his patients, and 1/10 of them said they had got worse, and 3/4 said they had got better, which is similar to the percentages he reports himself.
     
    merylg and justy like this.
  13. trickthefox

    trickthefox Senior Member

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    Yeah i would definitely say for anybody looking at this thread considering going to Breakspear, to reconsider, Dr Myhill is the best bet for the UK i believe, but sadly she is not as thorough as i need right now, 3/4 is encouraging
     
    merylg likes this.
  14. msf

    msf Senior Member

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    I think the best bet for those in the UK is to go to Belgium or Germany.
     
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  15. trickthefox

    trickthefox Senior Member

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    Did you find any financial support for your appointment with KDM @msf? how do you estimate its going to cost you for a year of your treatment (including all supplements, tests, meds etc?)
     
    merylg likes this.
  16. trickthefox

    trickthefox Senior Member

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    Brighton
    sorry if thats too personal, you dont have to answer!
     
  17. msf

    msf Senior Member

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    No, I was lucky in a way, my father (who also had ME) died a few years ago and left me some money.

    I don't think it will help if I just give you my running total, as the kind of treatment (I have only had oral antibiotics so far) is a major factor in this. If you go on the Redlabs website they have the costs of the tests there. I would imagine it would work out cheaper than Breakspear though.
     
    merylg likes this.
  18. trickthefox

    trickthefox Senior Member

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    Brighton
    I'm really sorry to hear that, okay thanks @msf, good luck on your journey!!! i pray you get the relief your seeking :)
     
    merylg likes this.
  19. msf

    msf Senior Member

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    Thanks, you too!
     
  20. MadeleineKM

    MadeleineKM Senior Member

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    I am from Norway and there is very good statistics for people getting healthy from his treatment, many return to their job, studies, they are hiking in the montains and starting family. Some has been ill for a long time. I would say the chances for getting better is there, it also depends on how well the pasient is following the treatment plan
     
    merylg, justy, ErdemX and 4 others like this.

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