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Phone consultation with KDM, input gratefully received....

Discussion in 'ME/CFS Doctors' started by Spinney Lainey, Jul 11, 2014.

  1. Spinney Lainey

    Spinney Lainey Senior Member

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    I had my phone consultation with KDM after receiving my results. I am rather mystified. He was very brief and said he thought I had inflammation due to 5 of the inflammatory markers being elevated and thought I had Lyme Disease. Apart from this, he also said my gut flora was a disaster and that I had some food intolerances.

    The reason I am mystified is that I was tested for Lyme and the results show the various forms of Borrelia as negative. He said he wants to send me a test for acute Lyme but I don't understand how if my results showed negative for Borrelia, I can have Lyme and how this other test kit he wants to send me for 'acute Lyme' would work.......and surely my case of Lyme would be prolonged, rather than acute.

    I am hoping when i get my treatment plan it will shed some more light on the situation. In the meantime, does anyone know about this...?

    I just feel so confused and wish he'd explained this to me, as I only realised afterwards that I was tested for Lyme and the results for Borrelia and Borrelia burgdorferi (which causes Lyme) were negative.

    Here are my results:
     

    Attached Files:

    Last edited: Jul 11, 2014
  2. RML

    RML Senior Member

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    Did you get a print out of your test results to look at yourself or just him telling you verbally over phone?
     
  3. Spinney Lainey

    Spinney Lainey Senior Member

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    I have the copy of my results to look at but didn't understand most of it
     
  4. RML

    RML Senior Member

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    Don't worry too much. It took me a long while to fully understand mine. And still now some I am not sure of, I picked out important ones.

    Did he do LTT test on you or is that the new test he wants done? All my Lyme tests except LTT came back negative.

    I never had a phone consult so can't help with that. Others will be better able to explain tests etc as they have more experience or understanding than me.
     
  5. minkeygirl

    minkeygirl But I Look So Good.

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    Can you tell me what the 5 inflammatory markers are?
     
  6. Spinney Lainey

    Spinney Lainey Senior Member

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    He didn't really say to me what the test was called. He just said test for 'acute Lyme'. It's interesting to know that you had a different test for it, too. Did he diagnose you with Lyme?
     
  7. Spinney Lainey

    Spinney Lainey Senior Member

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    Not sure, I'm afraid, as I don't know what I'm looking for but just uploaded the results. I know he mentioned cytokines and elastase when I asked but then just said he'd put them in the treatment plan.
     
    minkeygirl likes this.
  8. RML

    RML Senior Member

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    Yes I was diagnosed with Lyme. but i don't know which is an acute lyme test, i'm still kinda new to these all too.
     
  9. Spinney Lainey

    Spinney Lainey Senior Member

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    That's interesting. It makes a bit more sense to me now if your results were negative for the other tests, too. How is your treatment going?
     
  10. RML

    RML Senior Member

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    I have not started yet, well I'm doing some pre-treatment but not sure how that is going, don't feel any different to usual really.

    It was the LTT Elispot test that was positive for lyme for me, as well as a low cd57 which can be indicator too (i think). Co-infections etc seemed to be negative.
     
    Valentijn likes this.
  11. Spinney Lainey

    Spinney Lainey Senior Member

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  12. Spinney Lainey

    Spinney Lainey Senior Member

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    Just looking for more positive information about it.
     
  13. Kati

    Kati Patient in training

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    I have my reservations about DeMerleir. He disagnoses most of his patients with Lyme. That's a red flag to me.
     
  14. Spinney Lainey

    Spinney Lainey Senior Member

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    To be honest, I had wondered about that. Especially now.
     
  15. Spinney Lainey

    Spinney Lainey Senior Member

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    I need to do some more research into this and speak to my GP.
     
  16. Kati

    Kati Patient in training

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    It's like new Lyme dr establishing in town, suddenly all the patients with iffy symptoms get diagnosed with Lyme, babiosa and what not without proper testing. I'm very skeptical about that.
     
  17. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    as best as I can understand it (without having the concentration to read a lot of papers), the official tests are not splendidly accurate from any standpoint, but their worst feature is that they miss a lot of patients.

    However I am not convinced there are any alternate tests which are any good. I would be skeptical, going off the alternate tests and signs and symptoms only, without some clearer indication that it would be from a tickborne infection.

    However keep in mind that proponents of the official position will typically try to make anyone who challenges them sound like an ignorant and evil person. It's politics.
     
    Spinney Lainey likes this.
  18. Sushi

    Sushi Senior Member Albuquerque

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    I sent you a conversation.

    Sushi
     
  19. Valentijn

    Valentijn Senior Member

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    Sushi, SOC and Spinney Lainey like this.
  20. Valentijn

    Valentijn Senior Member

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    Looking through your results, you don't have the Elispot-LTT test, so that's probably what he wants to add. Other Lyme tests, such as Western Blot, have very high rates of false-negative results, meaning they often show no infection even when there is an infection.
     
    Sushi likes this.

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