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KDM visit - (post?) Lyme, EBV - fatigue, inflammation, static intolerance

Discussion in 'General ME/CFS Discussion' started by MartinK, Jan 5, 2018.

  1. MartinK

    MartinK

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    Hello evereone! Hello in 2018!

    For this year I decided to make a big step - invest money from my lovely parents and go to heal to Belgium - KDM / Himmunitas
    First appointment was before Christmas, now Im waiting for results...

    But gradually...

    My problems is huge fatigue with inflammation feelings and static intolerance - 4 years, last half year after some flu-like problems are this problems
    bigger and Im staying in bed for most of day...
    I think help here on PR forum can be maximum if people with the same problems are found each other - experiences is multiplied!
    CFS problems comes from various causes - different treatment

    I've read a lot here really, sometimes I was confused, sometimes I was motivated...this is also true about KDM and his treatments.
    So many different opinions about him here - I only knew, better to try than to stand in place!!!
    Here in Czech, I have exhausted all...there was no other option.

    More to the past...
    My problems starts from day to day - after half of year one doctor here in Czech diagnoses me Lyme, Erlichia, Bartonella and Helicobacter.
    Treatment with Minocycline, Azithromycine, Rifampicin, Plaquenil and pulses of Entizol was 1,5 year long - without any big herx reaction and progress.
    Another doctor in Slovakia treated me after this little bit different - Amoxiciclin, Doxyciclin, Entizol...and D vitamin and Polyoxidonium.
    This was next 1 year....next one year without progress and change.
    I did not know what to do next, so I found this forum, meanwhile, the troubles worsened and placed me on the bed...

    I could not stand it anymore - I got the money and decided for Brussels with new hope.

    this is a few of my results with which I went to Brussels:

    Lyme (+ - same results in all my tests last 4 years, PCR test was 2x negative)

    IgG 1,060
    IgM 1,280

    EBV (looks like reactivations after consulting with some kind users here - and it is possible, has never been treated before)

    EBNA IgG 3,600
    VCA IgG 3,200
    EA IgG 0,800

    VZV

    IgM 0,14
    IgG 2080,00

    Mycoplasma

    IgA 0,590
    IgG 3,060

    CD57 (NK cells) 60 (this test is still around 60)

    one of my full 2017 results -
    HERE https://www.dropbox.com/sh/ylvmhyaswg9pa5p/AABv1kQsh5OX8gnOuIpl0amYa?dl=0

    Brussels / Himmunitas

    Flight and transfer was hadrest physical test for me! Thanks god for good taxi network in Brussels...I recommend taxi verts!
    My friends sister live in Brussels and she helped me with the accommodation.
    From center to Himmunitas its 25 minutes. Bad situation is about 9-10, when many people go to work, morning about 7 is good!
    Getting up soon makes me a big problem - inflammation feelings are biggest in this time. I dont know why...all my muscles are burning.
    I did it and get it to Himmunitas!!!
    The good thing is there are a couple of suitable seats to relax (or sleep :))

    Lactose test makes me a war in my stomach!
    Fructose was good...

    And proffesor KDM? Yes, he dont talk too much...a typical scientist. He asks clearly and surely...
    Questionnaire is really hard for people who does not speak good English - me!
    I recommend you to prepare your whole story on paper at home ;-)

    KDM spoke mostly about "post Lyme syndrome" - and I had a lot of antibiotics for this in past. He wrote many other tests and now Im waiting...
    At the beginning of February, I return to Brussels!

    The whole examination was very professional and gave me a new hope...

    Hope and faith - this is two words, which I believe are important as treatment itself!
    I dont know anyone here who would heal without faith and lust - depression and helplessness are the way to hell (this was my case last year)
    New hope is a new force and I wish it to everyone here!!!

    I hope I will find here on forum someone who has the same problems and was successful with KDM - please, write me! thanks a lot!

    I believe to find answers and help to:

    -why inflammation feelings are worse in morning and what is causing them (largest inflammation is in the limbs and body)
    -why inflammation inside me but hands and legs are cold
    -where is center of my inflammation
    -why static intolerance (I have a bad back, but I never had static intolerance with them)
    -how to fix it static intolerance
    -find correct diagnosis and treatment for all

    Now Im on Valtrex 4 weeks (1g 2x day) and Isoprinosine 4 weeks (1g 3x day), 1x 14days Sub IG
    My immune doctor in Czech Republic is very kind, but he is not a great specialist...I talked to Valtrex with him after recommendations here (for possible viral problems)
    I hope, my immune doctor help me with treatment from Brussels!

    I will update this thread here and I hope someone with similar experience will write, who has been successful.

    and I add - is here some section with successful stories? Im looking for psychic boost! :)

    thanks a lot! I wish much strength for all in 2018!

    Martin, 29, Czech Republic
     
    ljimbo423, alkt, pibee and 6 others like this.
  2. Mel9

    Mel9 Senior Member

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    NSW Australia
    Welcome! It looks like you have made a good start, hopefully to improved symptoms. I'm sure you will get good support here.
     
    MartinK and MEMum like this.
  3. Learner1

    Learner1 Professional Patient

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    Hi @MartinDH ,

    Given the quantity of antibiotics you've been on, was a DNA stool test part of the diagnostics? Some of the symptoms you mention can come from imbalance in your microbiome. The research seems to connect ME/CFS to microbiome problems.

    May be careful attention to cultivating a "normal" microbiome through use of specific probiotic strains and insoluble fiber would help.

    In addition to the other things KDM and your other doctor are addressing.

    Hang in there...:hug:
     
    MartinDH and MEMum like this.
  4. MartinK

    MartinK

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    Hi @Learner1
    yes. 3x stool tests was in my tests - look forward to results next month!

    imbalance in my microbiome - fact is, im really thin all my life, I can eat as much as I want, weight is still the same! :)
    my gut is OK, i think - I have no problem with bloating or emptying all the time.

    it's true that I take probiotics but I do not change tribes often...I've read a lot about, for example, about Mutaflor

    look forward for KDMs results, I hope, he is really gut specialist.

    best regards! Martin
     
    MEMum likes this.
  5. Learner1

    Learner1 Professional Patient

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    Hi Martin,

    Just because you don't have symptoms doesn't mean your gut is fine. Figuring out what tribes you have and changing the probiotics and probiotics you take to compensate for any gaps or deal with overgrowth of bacteria, fungi, or parasites could make a difference in your ME/CFS symptoms.

    https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4

    https://www.omicsonline.org/proceed...-on-host-fatigue-in-mecfs-patients-45721.html

    The researchers have been finding that disturbances in the gut microbiome are common among patients, and attention to this might help your recovery.

    Hopefully KDM will be able to guide you.
     
    bertiedog likes this.
  6. MartinK

    MartinK

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    @Learner1 thanks for this articles...I will read it! But it will be a little bit slow with my english skills :)

    mm...im thinking, looking for continuity...
    But, isnt it striking? - my symptoms are same from beginning, when I was without ATBX?
    Problems come from day to day in full strenght - like flu
    And after long time on ATBX for Lyme are problems same, but worse...
    Mainly the inflammation has increased - with him more fatigue and OI...

    the greatest improvement I feel when I breathe cold air from outdoors and make some muscle stretching

    I try to compare everything with the beginning of the problems.

    hope for new infos from stool tests!

    but, thanks a lot for this opinions!
     
  7. Learner1

    Learner1 Professional Patient

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    You are quite welcome... I think we have some very complex problems, with many causes of our symptoms. It has made sense to me that the more that we can work toward being "normal" in every way, the more likely are to become normal...

    Hope you get some answers soon...;)
     
  8. MartinK

    MartinK

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    I hope KDM tests show more - proinflammation markers, proinflammation cytokines, CD14 and results from stool tests...
    fact is - I never specialized my treatment on my gut, with ATBX for Lyme I was used probiotics all time with treatment, but it was not specialized and targeted.

    My food and drinks before my problems was not perfect - I was bicycle rider - many energy drinks, sometimes fast food, fast life, hard work...maybe there was cesret problems before my CFS...who know!!! :-/

    Hope for good news with results from KDM! Im really tired from this bad 4 years of my life and motivation for good health is maximal!

    Is there any specialist over oxidative stress?
    This is another chapter, which I try to learn...

    last year Im on:

    Glutathion reduced 500mg + liposomal vit C 2000mg + CoQ10 100mg in morning
    ALA 200mg + ALC 400mg afternoon
    good green tea afternoon
    Curcumin 2000mg + Boswellia 1000mg evening
     
  9. Learner1

    Learner1 Professional Patient

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    How about vitamins A and E?
     
  10. MartinDH

    MartinDH Senior Member

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    I think there is a misunderstanding. I am not in contact with KDM?!? But yes, I had it got tested and it showed an imbalance. I am working on it. Not that easy ;-)
     
    Learner1 likes this.
  11. MartinK

    MartinK

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    @MartinDH oh sorry, Learner1 overlooked our names it seems...:)
    but, when you have here - good luck with your treatment! gut problems are your main problems?

    @Learner1 - vitamins A and E - I have never been more focused on them yet, maybe its a place to improve treatment support! I will soon make an order from iHerb!

    Martin
     
  12. MartinDH

    MartinDH Senior Member

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    That and heavy PEM (extreme weakness)
     

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