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My trip to see Professor De Meirleir (long post)

Discussion in 'ME/CFS Doctors' started by justy, May 17, 2014.

  1. justy

    justy Senior Member

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    TH1 AND TH2 are immune function tests, not for thyroid.
     
  2. justy

    justy Senior Member

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    I have been having reccuring lung infections since I had walking pneumonia at 10 - I am now 44. CPN can become chronic and is thought to cause some cases of Asthma, alzheimers and MS.
     
    Valentijn likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @justy

    Good for you for keeping the appointment even though you were so sick.:thumbsup:

    It sounds like you got some very important input that you needed right then!

    The "no improvement for 6 months to a year" part can seem difficult but rebuilding your immune system could be a foundation for the long-term get-better picture. Just knowing you are going in a promising direction can make a difference in how you feel.

    So glad you are on CPN antibiotics now and hopefully turning the corner in this acute situation. When I started treatment I was low positive for CPN, but I test negative now. Mine wasn't acute and it seems that the immune treatment he prescribed knocked it down.

    Best,
    Sushi
     
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  4. justy

    justy Senior Member

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    I received my copy of the test results, treatment plan etc from the clinic today. It makes for quite grim reading, and I was surprised that he saw me as very sick - he says he is concerned at the difficulty of treating me at a distance and he wants me to have IVIG for a few months before abx - preferably iv.

    For now he has put me on Iron, Folic acid and an oral antibiotic for the Bartonella - he does not say how long to take it for. He says my case looks complex.

    I feel a bit down about it - no idea how to go about organising and paying for any of this. But one thing is for sure - without treatment I am not going to get better - my immune system is a mess.

    Late here now, but I will post more about this tomorrow.
     
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  5. AndyPandy

    AndyPandy Making the most of it

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    Thinking of you @justy.
     
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  6. JoanDublin

    JoanDublin Senior Member

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    Oh dear :( Not surprising though, given how long you have been ill and what he said in your consultation. Jeez it must feel like an endless uphill battle. Rest now. Catch you tomorrow
    Hugs
    Joan
     
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @justy :hug:

    Don't hesitate to ask for help in trying to figure some of this stuff out.

    Best wishes,
    Sushi
     
    justy likes this.
  8. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @justy I am so sorry to hear this and also sending good thoughts and keeping you in my prayers. I think one thing you can do in case you are reading the paper from KDM over and over (like I would be!) is to take break, get some rest and then go back to it in the morning. Maybe make a list of all the pros and cons of each option. Is there a way to do the IVIG portion of treatment in the UK and then go back to Belgium for the ABX portion?
     
    justy likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    @justy - Methylfolate is the better form of folate to take. Some people can't process folic acid into methylfolate efficiently.
     
  10. bertiedog

    bertiedog Senior Member

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    @justy Sorry to hear you have been so unwell recently but glad that Dr D M will be able to help you though it will be a long haul.

    I started herbal treatment for the Lyme and probably Erlichia last Friday. My herbalist said it would be at least 2 years before I would be a lot better but she was going to go slow with me I guess because of the adrenal insufficiency thing. Did feel terrible on Sunday, non stop bad heads plus so fatigued and shooting pains through my body but amazingly I was so much better yesterday. However one of the nasty heads I get broke through by the evening so today feels back to square one.

    Have you tried LDN at all because that is supposed to modify the immune system? I started mid June and have been very sensitive to it and not been able to go above 1 mg. It does seems to help with energy and also helps one to have a good mood but not sure if Dr D M has mentioned it to you.

    Hope you are soon going to be so much better.

    Pam
     
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  11. Hanna

    Hanna Senior Member

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    Thinking of you too Justy. Dr Horowitz indeed enphazised that tough and complex patients should receive IVIG treatment (I don't recall if it was prior or along ABX, but someone else may remember) That was often a corner stone for them in the way to get better.
    Of course, this doesn't solve the problem how to get the treatment.
    Perhaps there is a place for thinking about alternative to the IV, like intra muscular immunoglobulin (there is an active thread called gamma-globulin where some of us are trying this route) ? Perhaps worth asking KDM about his experience with it?
     
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Does KDM ever recommend immune mods like immunovir. I think immunovir is easier and cheaper to get in Europe, so thought he might use them.
     
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  13. justy

    justy Senior Member

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    After reading up on Gamma globulin and IVIG etc I can see why he chose this rather than other immune modulators. One reason may be that another part of my immune system is OVER active and I have low autoantibody titres. Another is that when I soke to him I had yet anther chest infection and was very poorly - just done two lots of antibitoics and two weeks of prednisolone to clear it and I keep going on like this with one thing and another - I can see it makes sense to try and booster my immunity to infections by borrowing someone elses immunity.

    I am just reading up on the thread posted linked to above on Gammaglobulin - KDM said I should have IVIG OR IM. I had no idea people could have such severe side effects - right now I am so sick I don't feel I could deal with it - sometimes through this infection been wondering if I can go on like this.

    BUT I want to try and follow ALL his plan, to get the best chance of getting better.

    I don't know if anyone here from the UK knows how to get this treatment here? ive tried searching online and only get links back to PR! cant find a private company - a few fertility clinics offer it.

    Has anyone had this treatment at KDM'S clinic? do you think he would do it there if I went for a while?

    Looks like I may be moving permanently to Brussels just need a rich donor first.
     
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  14. Valentijn

    Valentijn Activity Level: 3

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    He has me on 4ME (nexavir), and I tried Glucaplex but didn't tolerate it. Both are supposed to be immune modulating.
     
  15. golden

    golden Senior Member

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    Perhaps you could try asking Dr. Myhill?
     
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  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @justy

    Yes, he gives IVIG at Himmunitas.

    Sushi
     
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  17. justy

    justy Senior Member

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    So this is what he actually says in the report
    He says I have 'M.E/CFS' but that an intracellular infection is at the basis of the disorder for me and this has become very complicated in me. He says that although my Elispot for Borrelia is negative this doesn't exclude a chronic borreliosis. This is because I am positive by serology for bartonella, which is seen as a coinfection with Borrelia and also because my strongly increased PGE2 (which depresses TH1), High sCD14, high IL8, low normal CD57 all support the hypothesis of a borrelia infection.

    He will redo the test with a triple amount of tubes (more lymphocytes).

    He then says my asthma and sinus issues are probably to do with chronic mold in the sinuses and Chlamydia pneumoniae infection.

    He says he 'sees difficulties in treating such an ill patient at a distance' He recommends

    1. Treat with gammaglobulins I.M or I.V for a longer period of time
    2. add DHEA to increase activity of TH1 immunity (haven't been able to tolerate this in the past)
    3. Start on IV antibiotics 2 months later

    For now he has prescribed, to start immediately:
    Rifampycin 300mg, 1 before breakfast for Bartonella
    Folic acid 5mg every morning (I wonder why?)
    Bio-iron daily.

    I have e mailed the clinic to ask them for a full costing and timescale for the recommended treatments if I where to stay in Brussels or go backwards and forwards for treatment there. I cant seem to find any way to do gammaglobulin here - and I think it is prohibitively expensive - does anyone know anything about this in the UK?

    So, plenty to think about here!!
     
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @justy
    I believe that the folic acid is because Rifampacin depletes folate--he recommended it for me too and we are both prescribed with Rifampacin. He told me that "something" (I forgot the details!) I was taking depletes folate, and the thing we have in common is Rifampacin.

    Best,
    Sushi
     
  19. justy

    justy Senior Member

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    Thanks for that Sushi! I also wonder if it is for building red blood cells - I have been having iron deficiency and low cell counts and size for years and he was keen that we get that sorted out.

    I took my prescription to my local, rural pharmacy today with some trepidation, but the pharmacist was amazingly helpful. He didn't baulk at all at filling the script - although the bio iron could be a problem, so I think ill make do with the normal iron from my GP.

    He also suggested I ask my GP to prescribe the Rifampycin as it will cost £66 per 100 tablets (100 days at the moment) he said he knows some people end up being on it for a long time and it could be costly. Prescriptions are free here in Wales, so I think he was just being helpful, however I am under no illusions that my GP will prescribe this for me, so will pay for the first batch so I can get started and discuss it at my leisure with the GP.

    Its great to have a helpful, local, independent pharmacist on my side!
     
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @justy Good for you and I am always impressed what a good advocate you are no matter how sick you are feeling. I am hoping with the antibiotic & iron you will start to feel some quick improvement.
     
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