The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

What kind of treatment does Dr. Meirleir advocate?

Discussion in 'General Treatment' started by andrie, May 19, 2015.

  1. andrie

    andrie

    Messages:
    21
    Likes:
    17
    Hey all, question for you. Quick background: Was pretty happy and mostly healthy 25 year old prior to this disease. Plenty friends, successful career and all around was pretty happy. Then I contracted a bad viral flu and got hit with ME. My cognition became horrible over night. Memory loss, severe brain fog and lethargy.

    Three months into that I was slowly recovering. But got some sort of stomach infection and among with plenty of digestive troubles I immediately stopped being able to sleep properly. Ever since that my cognitive function has just been going down the drain slowly.

    It's come to the point where I have severe memory loss, trouble talking, finding words and almost total inability to visualize things. At times I also lose the ability to read, although that comes and goes but it's getting worse.

    I've done all the supplements in the book. My diet is great as well. My biggest success have been through antibiotics.. They gave me some sleep quality and energy back I then recently did a DNA sequencing of my gut flora through uBiome and my flora was in bad shape. I then took things a step further and did fecal transplants since I was having success with antibiotics. I'm in the process of that right now. Due to that my digestion is a lot better. I'm not chronically constipated anymore and I've put on weight. My digestion feels 70% back to normal. But I'm even more lethargic and sleep worse for some reason. Although I'm hoping that will pass once the flora stabilizes again.

    But honestly right now I feel quite hopeless, there's very little knowledge about CFS in my home country. And those who have a little knowledge there is over a years waiting list. I don't think the fecal transplants are working well enough and they were sort of my last resort as I've tried everything else.

    I have heard people talk about Dr. Meirleir being one of the best CFS doctors so I was wondering what kind of treatment does he advocate?

    Thanks
     
    Last edited: May 19, 2015
  2. Helen

    Helen Senior Member

    Messages:
    2,068
    Likes:
    3,188
    Hi @andrie ,

    Welcome to the forum. I am a patient of KDM and I would say that the treatment is individualized based on symptoms and thourough lab testing. For my part I am very happy with the diagnosing and treatment (after years of seeing the best doctors in my country) and I am doing much better after 3 months of treatment. If you have a chance to see him I would highly recommend booking an appointment as soon as possible.

    Helen
     
    Jennifer J, justy, Sushi and 2 others like this.
  3. gregh286

    gregh286 Senior Member

    Messages:
    594
    Likes:
    823
    Londonderry, Northern Ireland.
    hi,
    you need to see him in person before he treat you,
    I was there 5 weeks ago.....next 1-2 weeks i get results and treatment plan.
    around 5 months waiting list.
    i think he is going after lyme a lot recently.....i'll post what he decides with me.
    what did your ubiome show
     
  4. andrie

    andrie

    Messages:
    21
    Likes:
    17
    What are your symptoms and what's your treatment like if you don't mind me asking? Thanks
     
  5. andrie

    andrie

    Messages:
    21
    Likes:
    17
    Okay, that's a long time.. I'm guessing there's a 2-3 month waiting list as well :/

    My uBiome just showed a lot of imbalances.. I was extremely high in some bacterial categories and extremely low in others
     
  6. Helen

    Helen Senior Member

    Messages:
    2,068
    Likes:
    3,188
    Long story.. I sent you a PM.
     
  7. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,336
    Likes:
    21,486
    Albuquerque
    I am also his patient. Treatment is completely individualized according to very thorough lab testing and your history and symptoms. I have found him to be a very good doctor. The wait time for the first appointment is probably less than the wait time after your appointment and testing, before you get your treatment protocol. He has many patients and travels to see them in 3 countries, so it takes time for him to work out the individual treatment plans.

    Sushi
     
    justy and Helen like this.
  8. Beets

    Beets

    Messages:
    6
    Likes:
    0
    How do you get to be a patient of Dr Meirleir? I had in total 5 years of intensive antibiotics due to Lyme Disease. Last autumn after I ate, I had severe joint pains/burning skin/cognitive defects. Recently I read about oxalate and it became clear that was my problem. I joined the Try Low Oxalates FB group. I now realise I had a diet high in oxalates, thinking it was healthy. My doctor gave me drips of vitamin C and vit D so I was probably producing them endogenously. Last week due to Yersinia, I landed in hospital. Now I have burning, crawling sensation on my skin, sometimes burning muscles, bones even, weakness and as if my brain is full of glue/calcified. No one here as ever heard of oxalates, but worse they are not willing to learn. Nor are they interested in gut flora. They sent the pain specialist who's given me Lyrica. They reject my feeling that the problem is my gut flora (I have high sulphur-reducing bacteria and critically low oxalate-degrading bacteria) and a build up of oxalates in the body. How do I get out of this hell (sorry, but it is currently)? I'm in northern Germany.
     
  9. msf

    msf Senior Member

    Messages:
    3,190
    Likes:
    4,467
    Hey Beets, have they given you any treatment for Yersinia? I also have this infection, and from what I've read, 3 weeks of antibiotics (typically Cipro) when you fall ill can save you 3 months or more of antibiotics later.
     
    Beets likes this.
  10. msf

    msf Senior Member

    Messages:
    3,190
    Likes:
    4,467
    RE: becoming a patient, just ring Himmunitas and make an appointment.
     
    Beets likes this.
  11. Bansaw

    Bansaw Senior Member

    Messages:
    388
    Likes:
    209
    Does Dr.Meirleir ever get to the States? (I am in NC)
    Also, where is the best place to start learning about Oxalates?
     
    Last edited: Jul 2, 2015
    Beets likes this.
  12. msf

    msf Senior Member

    Messages:
    3,190
    Likes:
    4,467
    Yes, he sees patients at the WPI institute in Reno.
     
    Beets likes this.
  13. Beets

    Beets

    Messages:
    6
    Likes:
    0
    Go to website lowoxalate.info
    And join the Try low oxalate Facebook group.
     
  14. Beets

    Beets

    Messages:
    6
    Likes:
    0
    They gave me nothing but said it is self-limiting.
     
  15. msf

    msf Senior Member

    Messages:
    3,190
    Likes:
    4,467
    It may well not be if you have Lyme, or if you are just unlucky - I think I was the second, but KDM has quite a few patients with both infections, in fact there is at least one on this forum.
     
    Beets likes this.
  16. msf

    msf Senior Member

    Messages:
    3,190
    Likes:
    4,467
    If I was you, I would look for a doctor who is willing to treat the infection.
     
    Beets likes this.
  17. Beets

    Beets

    Messages:
    6
    Likes:
    0
    It seems to be resolving but I have problems with oxalate. I had 5 years of antibiotics over a 7 year period. They didn't want to give me more. I think my gut is a major problem. I have severe pain and tremendous brain fog.
     
  18. Beets

    Beets

    Messages:
    6
    Likes:
    0
    Is it expensive? How much does he charge?
    Does he believe in the gut causing pain and cognitive deficits? If so, how does he rebuild the gut?
     
  19. gregh286

    gregh286 Senior Member

    Messages:
    594
    Likes:
    823
    Londonderry, Northern Ireland.
    Hi.
    i am a patient.
    diagnosed with lyme and chylmedia co infection.
    first visit cost 3000 euro or.more.depending on amount.of.test ordered.
    around 5 or 6 months waiting time.
    he will do mega.amount of tests.and.treat each patient as individual.
    get your name.down if you can afford it.
    demeirleir does extensive stool test and microbiome. Also he does food allergy etc.
     
    Beets likes this.
  20. Beets

    Beets

    Messages:
    6
    Likes:
    0
    Ups! That's big money and it would be tough getting to Belgium. But I want so desperately to get better. The microbiome test is interesting. Which lab does he use for this? How does he rebuild the gut when that is the problem?
     

See more popular forum discussions.

Share This Page