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Olympic Skier beat Lyme Disease

Discussion in 'Lyme Disease and Co-Infections' started by Sushi, Feb 8, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Freeskier Angeli VanLaanen Living With Lyme

     
  2. joshi81

    joshi81 Senior Member

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    i have get yesterday my LTT test from infectolab in germany and it says i am positive to lyme ...now i'm going to do other test to have a confirm but it seems that i should start this battle... and again let's start one more time to research and research and research becaus eit's not that easy that you got something and go to the doctor and stopo, no you have to find the good practitioner, the good kind of treatment and so on... i am so tired...
     
    justy likes this.
  3. maryb

    maryb iherb code TAK122

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    Good and bad news - at least you know the enemy you have to fight. Sorry you have that rotten disease.
     
    justy likes this.
  4. Hanna

    Hanna Senior Member

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    Joshi, I see that you live outside Germany and had your blood sent to Infectolab. Was it sent with Fedex or another company? Do you know what is the maximum time we have - from the moment you draw the blood untill the sample gets to the Lab ?
    I am very interested to do the LTT (I was diagnosed for borrelia by quantum medicine and want to double check, though the clinical picture fits totally).
    How do you intend to treat the it?
    Thanks Hanna
     
  5. joshi81

    joshi81 Senior Member

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    i made it through a lab here in italy so the lab made everything, here we have an association which is CFS-friendly and relies on a lab which help us to make tests not available in italy.
    I want to double check too because i really do not know what reliability has the LTT test, i am planning to go to a city here in italy where they do PCR for Borrelia, CD 57 and other test for coinfections because i want to be sure i really have this borrelia. Then the doctor will tell me how to proceed (an expert in Lyme)
     
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  6. justy

    justy Senior Member

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    Great video - well worth a watch!
     
    Helen likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Hanna,

    I think you should be able to send it from Israel. I had blood drawn in Belgium and sent to Germany by DHL. The shipping was about 40 euros I think as they sent it the fastest way. You can call or write to Infectolab for instructions.

    @joshi81 The LTT is supposed to be one of the most accurate tests for active Borrelia. But if you are low on lymphocytes it is less accurate unless you send double the amount of blood. It is good to double check by PCR but, while if you get a positive by PCR it is a very reliable positive, it is hard to actually "catch it" in the blood by PCR. Thus you may get a negative by PCR even if you are positive.

    Sushi
     
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  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'll be watching for her in the Olympics! :) It was so good to hear her say something like, "I feel like I am really me again."

    Sushi
     
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  9. justy

    justy Senior Member

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    I felt very emotional when she said that - I feel like I don't remember who 'me' is anymore, and could see her coming out of that fog and it was a big thing. To feel 'like yourself' again, one of the things I most desire.

    I really related to what she said about balance being one of the first things to go - it was one of my first symptoms (I do not have a dx of Lyme currently, never been tested). I noticed after I had my 2nd child 20 years ago that it was hard walking down steps, especially steep ones. When I had my severe relapse 5 years ago the first thing I noticed, apart from the fatigue creeping back in was that when I tried to swim - especially front crawl I felt all unbalanced, like I was going to tip over in the water - it was a really scary feeling.

    so glad she has had such good improvements in her health - now I want all the rest of us to have it too.
    So want to get to Belgium and have that testing!
     
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  10. joshi81

    joshi81 Senior Member

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    yes i know that a negative PCR does not mean that i am negative i do them just to see what comes out... i wrote to her anyway (to the girl of the movie) to ask which kind of test did she run which were positive and allow her to be diagnosed with lyme...hope in her answer
     
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  11. Ren

    Ren Primum Non Nocere

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    Just wanted to add that - to my understanding, the Lyme (borrelia) doctors in Germany follow (fully or closely) the ILADS protocol. And though I can't say if it's true or not - I seem to have read somewhere that in some areas of Germany now, LTT is now being used in the public healthcare system as well.

    By comparison, those in power in Sweden continue to ignore German and ILADS methods. And now they've begun to follow along the lines of attack for ME/CFS, saying that people who don't get well after antibiotic treatment (2 weeks only) may be mentally ill.

    A Norwegian Lyme doctor (Rolf Luneng of the Norsk Borreliose Senter - Oslo) has recently had his license suspended (and is now engaged in legal appeals, etc.) for practicing the same protocols as ILADS and the German doctors.

    I'm not aware of how things are in Denmark, but it seems like there's been a lot of conflict-of-interest *accusations* bc the public healthcare system was only using/endorsing Elisa (sp??) testing, which happens to have been developed by a Danish doctor who profits from its use and who is influential in government policy regarding testing methods.

    Best wishes, joshi81 (and others of course), that the good doctors (and your own body of course) are able to "work their magic" and you continue to heal! It's good to know there are borrelia doctors in Italy. Seems that I read sometime back about a really good doctor in Hungary as well, but he may be largely retired now.
     
    Last edited: Feb 11, 2014
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  12. joshi81

    joshi81 Senior Member

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    @Sushi but wait a minute, did u run the LTT test? if yes do you remember the values you got? there are 3 parameters tested in LTT test and all 3 should be lower than 2 mine were the first one 6 and the other ones both 5
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, I ran the LTT and my values were 0, 1, 0. Negative.

    I am positive for Bartonella, though, by PCR.

    Sushi
     
  14. joshi81

    joshi81 Senior Member

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    Oh interesting.... i was concerned about them because they are a lab which is specialized in these infections and i was kind of afraid they overdiagnosed people...
     
  15. paquito

    paquito

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    Hi Joshi,

    I'm italian too and just got bitten by a few ticks with skin reactions. Taking antibiotics now. Can you tell me where in Italy you are and the name / contact details of the doctor expert in lyme that is following you?

    Thank you!
    P
     
  16. joshi81

    joshi81 Senior Member

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    Hi paquito maybe we just e-mailed time ago if you are the one who had Pyroluria .. nayway, i'm from Rome and the doctor i'm talking about is Dr Trevisan in Trieste
     
  17. joshi81

    joshi81 Senior Member

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    Ps: which tests di u run and came back positive for you (if you are diagniosed woth lyme?
     
  18. Ren

    Ren Primum Non Nocere

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  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I could understand that, yet I know quite a few who have tested negative on the LTT and one who was very positive on the first test and then after over a year of antibiotics, tested negative on the LTT.

    Sushi
     
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  20. joshi81

    joshi81 Senior Member

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    Hi Ren i used it for 3 month, i didn't notce any effect maybe u should have done it longer but i had to do tests so i had to quit for a while
     
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