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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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My Prof De Meirleir patient experience...

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Tony, Aug 1, 2009.

  1. Vojta

    Vojta

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    Thank you all for sharing your experience with KDM. How did you make an appointemet with him in his Brussel clinic? And how long had you had to wait to get there? I tried to contact them by email but without any response so I suppose they are only on the phone.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Address: Himmunitas
    De Tyraslaan 111
    1120 Neder-Over-Heembeek (Brussel)
    Belgium
    Telephone: +32 (0)2 266 87 40
    Email: info at ehmb dot be

    Hi Vojta,

    In my experience they aren't so good with email. I made an appointment by phone. At the time (over a month ago), they had about a 2 month waiting time for an appointment--it may be more now.

    Good luck,
    Sushi
  3. RivkaRivka

    RivkaRivka Senior Member

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    anyone/everyone,

    did you do the H2S test? i just got my kit and can't do the test for 1-2 wks because i have to wait for the antibiotics to get out of my system. do you know if i am to put the unused kit in the fridge or freezer? the directions seem to state both and i can't figure out which.

    rivka
  4. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Hi Rivka, The kit is stable at 4 degrees Centigrade, so in the fridge is good. This info was on the sheet I got with the test.

    Cheers..:)
  5. RivkaRivka

    RivkaRivka Senior Member

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    the sheet i got with the kit (today) says

    STORAGE
    Kit is stable at -18 C in the dark until the kit's expiration date.

    and the KDM doctor's office said the same thing to me via email
  6. Vojta

    Vojta

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    Thank you for information Sushi. Does anyone know if they speak German there? It would be more convenient for me.
  7. Tuha

    Tuha Senior Member

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    I dont know if they speak german there but your english doesnt have to be perfect to understand. My english is bad but I had no problems - they are really nice there,
    maybe you now already about but if not this link can be usefull for you. There are some experiences from one czech guy who visited KDM:
    http://www.me-cfs.cz/view.php?cisloclanku=2009011701
  8. Frank

    Frank Senior Member

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    A lot of people in Belgium speak Dutch, French and German. So i suppose to become a professor you basically have to know German, it very close related to Dutch.
  9. Tony

    Tony Still working on it all..

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    I thought it worth noting that I've run out of nexavir for the past two weeks and feel noticeably worse this past week. It's different to a 'lower' day or two that I sometimes have. It'll be interesting to see if the nexavir picks me back up...and if it's relation to xmrv/mlv's is bearing out in my (as yet unconfirmed) case.
  10. Tony

    Tony Still working on it all..

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    13th Jan 2011
    I’ve been back on the nexavir since xmas and it took about a week to kick in. A little energy came back. I mowed the grass (60% of the last effort that set me back a bit) and came up ok. I’d also worked lightly in the garden for half an hour 2 days before that effort.

    This past week I’ve improved a bit more. I’ve been more physically able to do gardening, house cleaning and food shopping with little if any payback the next day. A bit more walking than usual hasn’t hurt. There is quite a noticeable difference. It’s only been a short time, but it feels really good...:) I’m lasting longer at some physical tasks and can do things more often.

    After these types of activity my muscles just feel like I’ve done some work instead of feeling semi-shattered. Even one night where my sleep was quite broken up didn’t set me back at all. For me, that’s impressive. I’m concluding that the nexavir is working.

    If this continues then I’m going to claim at least a 5% overall increase in ability. Time will tell...

    15th Jan... Walked much further than usual today. Over 30 mins in the warm sun. It was a little too far but I’ll see if there’s any payback over the next few days.
  11. ukme

    ukme Senior Member

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    Good luck with it all Tony, please keep posting it's really helpful.
  12. RivkaRivka

    RivkaRivka Senior Member

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    tony, thanks for reporting in on the nexavir! please keep up updated.
  13. girlinthesnow

    girlinthesnow Senior Member

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    Hi Tony, just wondering how you are doing now. I'm just about to start on nexavir and it would be great to know how you are.

    Cheers!
  14. Tony

    Tony Still working on it all..

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    Hi snow girl, I'm doing a bit better lately, a touch more stamina and still feel generally better, less toxic and sick. I'm still up and down but my ups are higher and the downs aren't so low.
    I'm actually looking at the nearby golf course with some enthusiasm and optimism. I hope to warm up in the nets and play a few holes, maybe next week or so. Not been able to do that since '07.
    I expect that'll slow me down for a few days!

    I'm still pulsing antibiotics and probiotics with the nexavir and b12. Good luck with the nexavir.

    Cheers!
  15. Athene

    Athene Never give up

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    Hey Tony! G'day mate!!!
    Great to hear your health is improving! Gardening and playing golf, that is so nice to hear. I hope it all keeps going better and better.
    It's good to hear your lawn is flourishing too, I am envious :) All I have is pots of dead geramiums :-(

    ANYWAY, NOW FOR THE...

    SPECIAL COMPETITION ANNOUNCEMENT!!! :thumbsup:

    I have two unopened bottles of nexavir which I wil post free of charge to the first person who sends me a PM with their name and address.
  16. Tony

    Tony Still working on it all..

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    Hi ya Athene..:) My lawn is really lots of weeds and some odd grasses joined together, but it looks green from my windows!...:)
  17. girlinthesnow

    girlinthesnow Senior Member

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    Hi there Tony, it's so great to hear that things are going along better for you, long may it continue. You've fortified my resolve!

    Take care and all the best.
  18. Enid

    Enid Senior Member

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    Just want to add thanks to Tony for his K de M story. Guidelines such a great help to us here and I hear his protocols are "the bees knees" - understanding and getting results. And may your health continue to better everday (not up to the garden yet myself and the UK worst possible place to suffer ME/CFS - perhaps another hundred years will do it).
  19. Athene

    Athene Never give up

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    WE HAVE A WINNER!

    Congratulations go to Jenny, winner of the Nexavir contest!!!
    Jenny, I'll bung it in the post to you as soon as poss!
  20. Jenny

    Jenny Senior Member

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    Wow - thanks very much Athene! It's so kind of you.

    Jenny

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