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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. A

    Who has had their CD57 tested?

    I had it checked and it was 68. I was diagnosed with lyme after a positive Igenex and infectolab test. Now treating with IV abx! ;)
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    Antibiotics with KDM

    Hi daffodil! I am also on rocephine in belgium. Well, i just finished my first 6weeks and tomorrow i will start with azitromicina. I am also very tired, much more than before i started treatment. I feel sleepy, drugged, my eyes hurt, I see double and blurry and I rest a lot. I take the infusion...
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    uncontrollable sleepiness after eating

    Hello @helios ! How long have you been treating lyme? How are you treating it? Oral antibiotics? What doses are you taking? I am interested because I am also treating lyme. I have been treating it for 9months now. 8 months with oral abx and one month with IV. I have been sick for 14 years so it...
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    Comment by 'atoska' in 'Pre-Lyme Treatment'

    Great that you are writing this blog! :)
    • atoska
    • Blog entry comment
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    In Belgium to see Dr de Meirleir

    Hola Sergio! @serg1942 ! :) I am living in brussels! I didn't do the magic to be able to do it in Spain! hehe.. but I think that if I ever have to do this again, I would be able to find someone willing to help me in Spain :) I am meeting a lot of people that are doing it this way... in their...
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    In Belgium to see Dr de Meirleir

    Hi Valentijn! Thanks for sharing your results and explaining them so deeply! I have also been diagnosed with lyme by KDM through Infectolabs. And I also had a positive Western blot through Igenex. Today I am going to start my third week of IV rocephine at Himmunitas. When are you going to start...
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    Just found out I have active lyme disease. I am stunned. Help!

    Hi @Xandoff! I also got tested for lyme through igenex two weeks ago. I am still waiting for the results cause I live in Spain and they had to send the results by normal mail. I am so nervous! I can't wait to see the results. I have already been diagnosed by Kenny DeMeirleir through infectolabs...
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    Borrelia – In the Lymelight

    Thanks @merylg for sharing the podcast! Very interesting! Are you diagnosed with lyme?
  9. A

    Just found out I have Lyme

    That is good news!! First step to recovery! :) good luck!
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    Comment by 'atoska' in 'My Story'

    thanks for sharing your story! :)
    • atoska
    • Blog entry comment
  11. A

    GIGA sequencing Uni Liege Bartonella - anyone had and found out?

    I hope you start feeling better too snowathlete!! :)
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    New Medical Director of WPI--Kenny De Meirleir M.D., Ph.D.

    Are you sure he is starting at the WPI in October? I have an app with him at Himmunitas in October...
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    GIGA sequencing Uni Liege Bartonella - anyone had and found out?

    hi snowathlete! Thanks for answering ;) Yesterday I was re-listening to my visit with KDM (I recorded it) and he said that when they find small fragments they don't want to risk affirming that we have Bartonella because the fragments could be compatible with some very very very rare bacteria...
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    GIGA sequencing Uni Liege Bartonella - anyone had and found out?

    I also have small fragments!! I just read it on the report! ha! :)
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    GIGA sequencing Uni Liege Bartonella - anyone had and found out?

    Sushi oh wow! Well.. if they found fragments.. you have it for sure I would say! The guy that I met on my first app with KDM had PCR "small fragments" for Borrelia and he is feeling much better after some months with abx...
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    GIGA sequencing Uni Liege Bartonella - anyone had and found out?

    thanks Sushi! I will contact him! I am sorry for my confusion.. but with what results did you get the "small fragments"?
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    GIGA sequencing Uni Liege Bartonella - anyone had and found out?

    Sushi Yes! Infectolabs sent me the results of my LTT test ;) They were "strongly positive" (+50, + 30 and +2). But were we also suppose to receive the results from the GIGA sequencing? What would those results look like?
  18. A

    GIGA sequencing Uni Liege Bartonella - anyone had and found out?

    My treatment is going ok.. had a mild herx I think.. I felt more tired, with some mental confusion, muscle weakness and eye pain. But I am back to where I was before abx, or almost there I think! Now I want the improvement to come!! :) So Infectolabs are the ones that are suppose to send you the...
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    GIGA sequencing Uni Liege Bartonella - anyone had and found out?

    Hi snowathlete! I was researching the same question you made and came upon your post... did you ever find out the answer? I also came up with gray zone and on my test results it just says "Bartonella sequencing at University of Liege". KDM says I probably have an uncommon strain and is treating...
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    Do you work / have career?

    Lala hello! Did you improve after treating all those infections that came up with LTT testing? thanks! Andrea
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    Help with KDM result's!! :)

    cigana hello! of course i will share my results! I think it is a wonderful idea :) We could maybe also write a little breaf list of worst symptoms and our energy scale.. to see if any results correlate with symptoms. I took a look at your results, some are very similar to mine, but others...
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    Help with KDM result's!! :)

    Sushi!!! Thanks for all your help! I will be looking for you this afternoon and see if i catch you online!! :D Here i post all my results.. i think he didn't test for C4a... He asked for PrPc "something", i can't remember, but they didn't send enough blood to analyse it. What do you mean both...
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    Help with KDM result's!! :)

    snowathlete Why are you expecting less than what you are hoping for? Nooo.. we have to have good luck sometime! Life owes us!! :) Good luck will come, don't know when.. but it has to! Hopefully this year 2013!! I read your post about your experience. Thank you for sharing! I will be waiting...
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    Help with KDM result's!! :)

    Hi Snowathlete!! Thank you for your answer!! :) Very very appreciated! I saw KDM last December and have been waiting to receive the results. I guess it took a little longer because of christmas and all that.. And I have my next app on February 13th. I am so nervous! I put so much hope into...
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    Help with KDM result's!! :)

    Hello everybody, I just received my test results from Red Labs Belgium. I have an app with KDM in a little more than a week, but I am so impatient! I would like to ask for any opinion of what these things could mean... it is the first time in my whole life that I have things wrong in my tests! I...
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    My Prof De Meirleir patient experience...

    Hello Plum! I went to see KDM for the first time last week. It was a good experience and I came out of his office with a good feeling. He asked for a bunch of things, I think that all together I will spend like 2500 Euros more or less (without counting the trip, hotel and all those things). He...
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    CFS/ME as a Liver issue

    well.. yes, everything you change to fix your cfs is something that you should change for life if you feel it is helping. I meant that the liver flush lasts 7 days. You can do it as many times as you want, but you shouldn't do one every week. Maybe once a month. And when you have expelled...
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    CFS/ME as a Liver issue

    undcvr.. thanks for your tips! I will definetly add zinc and b6 to my list of daily supplements! :) Liver flushes release bile ducts of parasites and gall stones. So yeah.. it should fit with your theory! I'm going to study it a little more and try it after christmas! alwayshopeful there is a...
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    CFS/ME as a Liver issue

    mmm.. interesting.. i have a lot to study! I think in some blood tests my Zinc levels were low.. What do you think about liver flushing? I have been taking B complex vitamins for a long time.. with no improvement.. maybe i need to try B6 and Zinc together..
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    CFS/ME as a Liver issue

    Hello undcvr! Your theory is very interesting. Thank you for posting it and trying to help all of us. I am very happy to hear that you are recovering!! marvelous words!! hehe I have a friend with fibro who says that she is also "curing" her self with liver flushes.. she doesn't know about her...