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I am booked in to see Prof. de Meirleir in January

Discussion in 'ME/CFS Doctors' started by snowathlete, Nov 27, 2012.

  1. SanDiego#1

    SanDiego#1 SanDiego#1

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    Sushi- would you contact me PC??

    SanDiego
  2. cigana

    cigana Senior Member

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    KDM found I had Rickettsia.
    SanDiego#1 likes this.
  3. snowathlete

    snowathlete

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    Thanks taniaaust1 for bringing up Rickettsia.

    I think from the little I read on wikipedia, it sounds like this occurs in certain places, but it doesnt go into details on which places, so i dont know if its a problem in the UK or not.
    Cigana, can I ask where in the world you are?

    I'll have to ask KDM about it. As you point out taniaaust1 he seems to specialise in enteroviruses, so thats good because that isnt an area i know much about. Im sure he will want certain tests run in that area.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think he usually tests for Rickettsia. I was tested but was negative.

    I wouldn't really say he specializes in enteroviruses (isn't that more Dr. Chia?) though he is aware of their significance. He is likely to run tests on many body systems to get as complete a picture as he can.

    Sushi
  5. snowathlete

    snowathlete

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    Your right Sushi, what I think I meant to say was the gut, but he has a pretty wide range of focus and experience really.
    I saw a short video somewhere where he talks about his approach, tailored to each person but he described a logical and comprehensive methodology. I'll have to see if I can find it and post a link.
    SanDiego#1 likes this.
  6. SanDiego#1

    SanDiego#1 SanDiego#1

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    Cigana-
    I too would like to know more about this.

    SanDiego
  7. justy

    justy Senior Member

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    As far as i am aware Cigana is in the UK. Rickettsia is common in the uk.
    My plan with Seeing KDM is to have as many of the tests he advises that i can afford - i wouldnt want to miss something important, especially after travelling all that way and spending all that money.

    Am going to ring today or tommorrow for appt.
    Xandoff and snowathlete like this.
  8. justy

    justy Senior Member

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    snowathlete and merylg like this.
  9. Clodomir

    Clodomir In hibernation mood

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    Valentijn likes this.
  10. snowathlete

    snowathlete

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    thansk for those links Clodomir, very handy. I had seen these in the past but then couldnt find them again. I had thought I had imagined them.
  11. Clodomir

    Clodomir In hibernation mood

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    Your welcome.

    But he also used other laboratories like : infectolab
    Www.Infectolab.de
    And "normal" belgian laboratories. For those laboratories, we 've being refunded ( as belgian people).

    Do you have also an appointment with the nutritionist? Or you don't needed?

    Hope your visit, will be positive for you.

    Have a good day

    Clodomir
  12. snowathlete

    snowathlete

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    Wish the UK NHS would refund me some of the tests but I'm sure they won't.

    Not seeing the nutritionist as I don't have much in the way of stomach problems, intolerances.
  13. tim0011

    tim0011

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    I'd recommend Infectolab laboratory from Germany for Lyme co-infections (Bartonella, Babesia, Mycoplasma etc.) They are pretty good but prices are very high. I paid 2200€ for whole Lyme panel + Co-infections. I was positive for Bartonella, both Bartonella quintana, and Bartonella henselae, which is not surprising since I have tons of neurological and cognitive problems (brain fog, glass in front of eyes, derealization, dizziness, disorientation).

    Interesting, though, even though Infectolab is good lab for Lyme & Co's Lyme tests were negative. For Lyme alone probably the best lab is Lyme Diagnostic from Bucharest, Romania. I went there myself by plane and the tests there were positive for Lyme. They use Direct Microscopy (Dark Field Microscopy) which revealed Borrelias in my blood stream. They also use super wide antibody testing from EuroImmune, Germany which also revealed I'm positive for Borrelia afzelli and garinii.
    santi and vitamink like this.
  14. tim0011

    tim0011

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    I'm just going to ask the question here rather than opening new thread. Does the doc also check genetics like MTHFR etc?
  15. SanDiego#1

    SanDiego#1 SanDiego#1

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    None of the Physicians with CFIDS here- that I have been to have ever mentioned most of these tests and I don't even know what they are.
    I do know Lyme.The point is- is there any treatment for these other than Lyme? Most of the people I know that have Lyme-it never goes away.
    SanDiego#1
  16. snowathlete

    snowathlete

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    From the little i know about Lyme it is relatively easy to get, difficult and unrealiable to test for and extremely difficul to get rid of.

    Regarding other bacterias, viruses parasites etc, it depends on the specific one but many have treatments of various types, some being more effective than others. Some are fairly easy to treat i think, others like Lyme, more difficult!
  17. tim0011

    tim0011

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    Actually Lyme is for many people easy fix. I personally know some people who had chronic/late stage Lyme for years and were cured with only one month of IV antibiotics. But of course on the other hand I know people who struggle years and years with antibiotics and they don't get better.

    I believe that those people are missing something that they don't get better. It may very well be something in genes that their immune systems don't start turning the wheels.
    SanDiego#1 likes this.
  18. SanDiego#1

    SanDiego#1 SanDiego#1

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    I think it depends on what Antibiotic they are on. Many can't take some of the ones rec.Particularly for a long period of time. Doxicyline is one.

    Thanks for the info.

    San Diego
  19. cigana

    cigana Senior Member

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    Hi SnowA,
    I am in London UK, not exactly famed for its zoonoses. It was a surprise to me too.

    He has diagnosed me with Lyme.
  20. snowathlete

    snowathlete

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    Hi cigana, was Lyme a surprise to you or did you have reason to suspect it?

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