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Big thinking about trip to Brussels after unfunctional treatment CFS/Lyme in Czech

Discussion in 'ME/CFS Doctors' started by MartinK, Sep 28, 2017.

  1. MartinK

    MartinK

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    Hi all!
    Im new here, look around and fighting with my English (thanks for understanding) ;-)

    I have a big problem 4 years with huge fatigue, feelings of temperature (biggest after wake up) and feelings of flu.
    I was treated in my country - Czech Republic with dr. Klubal, BCL Clinic and on Slovakia dr. Ďurovská - views of the doctors were different, I have gone through many protocols for Lyme...but without result - fatigue is bigger and feelings of flu are more frequent...:-(

    Now Im thinking about next step - because it seems I have tried everything in my country.

    I was read some threads about dr De Meirleir - and I think, he is probably best to try in Europe.
    Agree?

    Problem is, its really hard finance this for me :-(
    I have many tests and results about Lyme, about immunity from my country - they will be good for Meirleir?
    I would like to do especially the special tests there and start treatment with him...
    But, please, have some estimate of how much the treatment cost?
    Approximately...

    I have 2500 Eur last saved money, I try to budgeting
    I do not know drug prices :-( the insurance company is not able to talk...

    is here someone from Czech Republic, who took the trip to Himmunitas?

    thanks a lot with help and sorry for my bag English skills (is really difficult search informations in English for me)
    best regards,

    Martin
     
    justy, Binkie4, ivorin and 4 others like this.
  2. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Hi @MartinK, Don't worry about your English. Even those of use who speak it as a first language sometime have trouble, thanks to brain fog. :ill:

    I can't be of help with the questions about Dr. de Meirleir. Could you contact his office and ask which, if any, of your test results he could use?
     
  3. Vojta

    Vojta Senior Member

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    Czech Republic
    Hello Martin,
    I was patient of De Meirleir for 6 years and he ruined me completely and his wrong treatments caused multiple new disease and problems. I lost huge amount of money and didn't get help even with one symptom. So I would strongly advise against wasting your last money on him.

    You can send me PM and we can talk czech. I will try to give you all information I have.
     
    Binkie4, Thinktank, pibee and 6 others like this.
  4. MartinK

    MartinK

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    Hi! so far I have written them only to verify free terms - still thinking about this trip :-/ so many different views here...
     
  5. MartinK

    MartinK

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    Ahoj Vojto!
    thanks for your answer - I found you and I follow you few days

    please, try to write me...thanks a lot!

    Martin
     
    Last edited by a moderator: Oct 8, 2017
  6. adelheid55

    adelheid55 Senior Member

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    Well, he helped me a lot in one year flat This has taken place from August 2016 to August 2017.
    I'm not completely OK but as my therapy isn't finished there might be more good to come.
    I have to say that I have been ill for more than 30 years with no help from a lot of specialists I have seen in my country.
    So I would definitely recommend him.
    You can talk to him about the tests you already have done.... Or send an email to Himmunitas and ask.
    Treatment costs depend from your diagnosis so for my daughter who is also ill, it's more expensive than for me.
    After Dr. de Meirleir's tests you should know more about your condition ..
     
    justy and Invisible Woman like this.
  7. Mollymolly

    Mollymolly

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    Hi,I myself have to sit or better lay down mots of the day ,because my legs feel heavy and very painful ad my back is killing me it is unbearable pain and when I get up I am dizzy and very weak to me it is like dying pain , I don't walk much but if I have to I use a cane which I am embarrassed with and going places is agony and by the time I get there I have sit multiple times, showering or cleaning cooking is just can't do ,I want to but can't , I have been in bed for more then 2 years and now I am tired of pain so I found Me/ cfs specialist that is putting the puzzzle together, but it is not easy, I need to visit multiple dr.,like rheumatologist,hematology, neurologist,to rule out other things like cancer, autoimmune ... ,need MRI, head, back,legs neck, and so on which is hard to do because walking or standing is hard to do
    I cry every day fom pain , and this is my second time around to see doctors,so my point is it will be multiple dr.visits to find out what is happening that is what I amtrying to do now again...
    Have you been tested for EBV ?
     
  8. adelheid55

    adelheid55 Senior Member

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    I don't know whether you ask me or Martin about EBV. I was tested and then treated. Now my active EBV is gone but KDM told me it might be back. The treatment for EBV wasn't expensive at all.
     
  9. Mollymolly

    Mollymolly

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    Yes was asking Martin. , when I hade EBV I did not know it spend months in bed , but was never treated
     
  10. MartinK

    MartinK

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    All best for you @Mollymolly !!!
    I had a mononucleosis 12 years ago ( I did not know about her that time) - it was secret for me, it was without treatment

    now my EBV:

    EBV/EBNA IgG - 3,200
    EBV/VCA IgG - 8,400
    EBV/EA IgG - 0,200

    EBV/EDNA IgM - 0,100
    EBV/VCA IgM - 0,100
     
  11. Mollymolly

    Mollymolly

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    Your testing is European right?
    So is it active or not now?, me too I dint know it and I have same symptoms like you now, it is horrible feeling of pain fatigue, and weaknesses Also I understand chech
     
    Last edited: Oct 26, 2017
  12. MartinK

    MartinK

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    @Mollymolly
    yes, Im from EU, but there is many better and experienced people to diagnostics from my numbers.
    I dont know, my doctor dont know 100% ...but fact is, Im really tired.
    I was treated for Lyme last 4 years, EBV nobody solved - but I know, before 12 years mononucleosis visit me.

    This is my actuall (worsening) problems:

    - huge fatigue
    - inflammation (primary after morning - legs and body)
    - flu feelings
    - chronic rhinitis (primary after morning)
    - frequent sore throat
    - frequent ulcers (on tonsils primary)

    ...no neuro problems, brain fog or pain (classic with Lyme!)

    So, if anyone was interested, here is my all last blood tests:
    https://www.dropbox.com/sh/ylvmhyaswg9pa5p/AABv1kQsh5OX8gnOuIpl0amYa?dl=0
     
  13. pibee

    pibee Senior Member

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    You dont have to go to Brussels, De Meirleir comes each month to Slovenia, Celje.. (I think usually on the 1st of the month), dont know the details, ask them!
     
    Last edited: Oct 28, 2017
    justy likes this.
  14. Mollymolly

    Mollymolly

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    So you have Lyme , you know people with Lyme in US go to extreme measures, they take out lymph nodes ; change diet; medications it is chronic;
     
  15. MartinK

    MartinK

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    its hard to say with Lyme I think from my previous experiences - I was a long time on many ATB protocols to Lyme, results and my health condition is the same of worse - last two months big inflammation (flu) feelings, thinitis, worse fatigue.

    @Learner1 recommended 10pass ozone treatment and I hope, this will be new hope!

    Antibiotic was too much in last 4 years without effect and Im really very careful with mitochondria dysfunctions from ATBs....minocyclines, azithromycines...
    I know here on guy from Czech too and he is in really bad health situation from quantum of ATBs...
    Big hope he will improve!!!

    My PCR test for Lyme was negative, I will repeat him in next two month for sure.

    Take out lymph nodes? Oh, I hear this first...why?

    Yes, my diet is cool in last 4 months, gut is good it seems - my digestion is good

    Martin
     
  16. Learner1

    Learner1 Professional Patient

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    Taking out lymph nodes is something that should be done understanding the risks. I had 5 lymph nodes removed for cancer staging, all found to be cancer-free, leaving me with lymphedema in my groin, leg, and foot. If you're not familiar with it, this is what it can look like:

    https://goo.gl/images/obf4D1

    It requires constant management, with massage and compression garments if one is unlucky and can affect mobility and fine motor skills.

    As for 10-pass ozone, it has been found to be effective for Lyme and other infections. I've spoken with 2 patients who have tried many other treatments and swear that 10-pass has helped them the most. It seems to be a 3 week protocol, with 5 treatments a week, then with boosters every 2-3 months. Here is some info:

    http://thepowerofozone.com/ozone-high-dose-10-pass/
     
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  17. pibee

    pibee Senior Member

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    When I was recently in a hospital for Lyme, my 2 roommates both had lymphedema, one idiopatic (they were suspecting it's from bartonella, actually!), but didnt go away for 9 yrs, since she was 16, and the other post-cancer, removed lymph nodes. That is hard thing to deal with.
    But I never ever heard it's being done for Lyme, maybe people think tonsillectomy? that's commonly done, and I think has a decent success.
     
    Learner1 likes this.
  18. Learner1

    Learner1 Professional Patient

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    It is a permanent problem.

    The lymph fluid moves up the body, from the extremities to the base if the neck, where it then gets shunted down into the kidneys for removal. The lymph contains waste products from the body's tissues, and without proper function, getting rid of these waste products is quite challenging.

    Here's an image that gives a high level overview:

    https://goo.gl/images/Lf8s9i
     
    justy likes this.

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