1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

Did KDM's treatment help you or did you get worse?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by bedman, Jun 19, 2012.

  1. bedman

    bedman

    Messages:
    54
    Likes:
    5
    Think of seeing him, but just read from somebody who got really worse from his treatment. Would like to hear from other patients: Did KDM help you?
    taniaaust1 likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,890
    Likes:
    5,734
    Albuquerque
    Yes, a great deal better.

    Sushi
  3. justy

    justy Senior Member

    Messages:
    2,557
    Likes:
    2,533
    U.K
    Hi Bedman - im also thinking of going to see him. My M.E is not so severe now so i figure that i can probably tolerate treatments better than i could have in the last few years. I wonder if it is those who are more severely ill who have a harder time.
    I tried searching on the boards for threads about his clinic but kept getting no results found - which seemed odd - im sure his treatments have been discussed many times before.

    All the best Justy.
  4. Clodomir

    Clodomir In hibernation mood

    Messages:
    155
    Likes:
    146
    Belgium
    Yes, he help me a lot. I am beter now than before

    Clodomir
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,890
    Likes:
    5,734
    Albuquerque
    Hi Justy,

    It is more what you are severely ill with! With some test results you may have problems with GcMAF. After a couple years of experience with GcMAF he screens carefully before giving it.

    Sushi
    L'engle and Tito like this.
  6. justy

    justy Senior Member

    Messages:
    2,557
    Likes:
    2,533
    U.K
    Hi Sushi, to be honest im not that keen on trying GcMAF at the moment. Im concerned about the whole inflammation issue. I have to be especially careful of immune stuff as i have a lung problem. But i am interested in the testing he does and his approach through the gut makes a lot of sense to me. Even if the gut is not the starting point - mine feels so messed up these days i dont know what to do with it anymore!
    take care, Justy.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,890
    Likes:
    5,734
    Albuquerque
    Or, you could try MAF 878 and see if it helps. Too bad they haven't made the starter available from the UK. I guess the shipping is a lot.

    Sushi
    justy likes this.
  8. cansado

    cansado

    Messages:
    85
    Likes:
    0
    USA
    I did not get worse..I did not get better from the last treatment. It depends maybe what kind of symptoms you are suffering from. I dont have a lot of inflammation.

    I am not responding to a lot of medications so he is still missing something.
  9. filfla4

    filfla4 Senior Member

    Messages:
    215
    Likes:
    138
    I've been seeing KDM for 18 months now. I was rigorous with his treatment last year for about six months and saw a lot of improvement. I had to stop the treatment for about six months for family reasons. I am now getting back on track. I think that KDM's approach and testing makes an enormous amount of sense. With me, from the outset he said that my profile didn't fit that of a typical ME patient and he wanted to get to the bottom of it. He persisted and carried on checking various things until finally this March I tested positive for Lyme by PCR at Redlabs and confirmed by DNA Sequencing at the University of Liege. KDM was almost "excited" about this diagnosis because he knew he had solved the puzzle. I have just started IV abx treatment for the Lyme this week which will continue for 4 weeks. After that I will switch oral abx and probably restart the GcMAF once again.

    Good luck!
  10. Vojta

    Vojta

    Messages:
    40
    Likes:
    22
    Czech Republic
    After more than year of treatment under KDM I have no improvement. I have gut dysbiosis and reactivated EBV. I had been taking GcMAF for 31 weeks. Now I've been on Valaciclovir for few weeks.

    I could say same thing as cansado. I am not responding to medications so he is still missing something.
  11. redrachel76

    redrachel76 Senior Member

    Messages:
    294
    Likes:
    253
    Israel
    One person writes about his personal experience visiting KDM on his blog here:
    http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/

    I have not visited him myself.

    I met one woman who saw him. She improved although I feel she was not that ill to begin with. He put her on a fructose + lactose free diet and gamma globulin.
    She told me she did not improve on gamma globulin much when I last talked to her. However she had a massive improvement avoiding fructose and lactose. I already avoid those things without paying a fortune to his clinic.

    I also get the impression that some improve and some don't on his treatment.
  12. redrachel76

    redrachel76 Senior Member

    Messages:
    294
    Likes:
    253
    Israel
    Sorry, but I've suddenly found a better blog post from the same author on Dr DeMeirleir.

    http://www.pugilator.com/awareness/prof-dr-kenny-de-meirleir-and-himmunitas/

    This was written years after he finished his treatment. (See my edit below.)

    The address and information about his clinic in Brussels is on this webpage. So it is useful if you still decide to go.

    Edit: I have just talked to someone who was helped by him. I found out that the webpage/blog link I posted is biased against KDM for a reason and that really he has helped a significant number of people.
    Firestormm likes this.
  13. cansado

    cansado

    Messages:
    85
    Likes:
    0
    USA
    Vojta,

    I also tested positive for those. Do you have any clue why GcMaf is not kicking in? I had 38 full doses shots without any results. I don't respond to medicine although there are a few antibiotics which made a little difference.

    Maybe it is the leaky gut? It is difficult situation for me as I want to research but the brainfog and concentration issues are preventing me from doing this.

    Even the diet I am following doesn't give me much improvement. I have a few moderate intolerances which I avoid and this helps a little.

    I am thinking of homeopathic might be more in the lining of my body.. I am clueless however I might return to KDM just for some testing...
  14. Vojta

    Vojta

    Messages:
    40
    Likes:
    22
    Czech Republic
    Cansado,
    I don't know why GcMAF doesn't work for us but I suppose leaky gut could be the problem. Diet and probiotics don't give me much improvement too although at least I don't have stomach pains when I follow the diet.

    My immunologist told me I have some traces of Borrelia and Anaplasma in my blood so it could be hidden problem for me. I'm going to try pursuing these bacterias now. But I have already tried different antibiotics and I have never seen any effects. Maybe I need higher doses or some combination. But I'm too brainfogged to research like you...
  15. lerae

    lerae

    Messages:
    63
    Likes:
    9
    filfla4~ I was diagnosed with Lyme...CDC +, as well as Bartonella and babs. Also the usual EBV titers.
    My body reacts Terribly to the GCMAF. I mean really bad. And I take a miniscal dose. I have felt close to ER trips
    after injections. I am hearing most lyme + patients are not resonding to it very well at all.
    I am seeing a new specialist who is starting me back on antibiotics and possibly IV's soon. My hips are very bad and I am still quite young. From what I am reading, am I missing the good results? I'm not on here enough to catch the happy stories.
    So, I am confused on what to do... My new LLMD/ND said he feels I should stop. What do I do then w/ 1 1/2 vials?
    That is a lot of money and if it is helping patients with cancer...should I donate or sell it to them? Have anyone of you used it for cancer or HIV purposes or heard of anyone?

    The initial dr. (dr. klinghardt), who said..."you need to take gcmaf for 3 months and I gaurantee you will be almost 100% better", obviously did not understand the bold statement of that. I have not heard of one lyme patient benefiting physically from this. I have heard of their nagalase going down, but no physical benefits. Of course I do not know all lyme patients and all lyme patients who have used this.
    It just makes me question why our bodies react so vehemently poorly to this? And I wish I had a good doctor to explain the biological affects. Dr. K wouldnt answer. Obviously he couldnt explain.
    Any thoughts? are you guys who are going on IV's still taking gcmaf?
    Thank you~
    Barbara
    Marlène and Xandoff like this.
  16. filfla4

    filfla4 Senior Member

    Messages:
    215
    Likes:
    138
    @ Lerae

    I took GcMAF for 7 months last year from January to July. Although the first few months were very tough, by about April I saw a lot of improvement. I was also taking VitB12 injections, Nexavir, Chlorella, Stomach Meds and monthly courses of abx. I stopped the treatment because my son was diagnosed with a brain tumour and I was juggling an enormous amount. I was feeling better and I simply let my own treatment slip.

    I tested positive for Borrelia for the first time this April. I had tested negative prior to that. It could be that the increase in macrophages brought the sprochetes out of hiding. It could also be that the very very tense and worrying situation I have been in is an ideal climate for the bugs to proliferate. Another factor is the fact that the lab I use has recently improved it's way of testing. I tested positive by PCR and this was confirmed by DNA Sequencing.

    I'm afraid I can't advise on GcMAF and Lyme. I haven't had GcMAF since last summer. I am in the middle of a 4-week course of IV abx for Lyme. I am struggling at the moment and although I'm planning to restart the GcMAF and have recently bought a new supply, I won't do so until I feel that the initial herxing is under control.

    You might like to check out this site: http://www.betterhealthguy.com/joomla/index.php I know that Scott was using GcMAF as part of his battle against Lyme.
    Xandoff and Clodomir like this.
  17. alexa

    alexa

    Messages:
    57
    Likes:
    24
    I am "under his wings "now and taking GcMAF, 4ME, lactoferring, antibiotics and probiotics, and b12, i have seen an improvement , but i have just started and my disease fluctuates a bit

    i am so greatful in having a doctor who does testing and interprets the results, before i had to be my own doctor,

    it has been hard having to go to my parents for the money but i hope that it will be worth it,

    is anyone else taking 4ME?
  18. xrunner

    xrunner Senior Member

    Messages:
    561
    Likes:
    230
    I was diagnosed with Borrelia, Bartonella and Cpn (not by KdM) and the MAF314 has been working well for me.

    I also started out with abx but then after a while they stopped working. So I tried biofilm-reducing enzymes and abx started working again. Then my improvements again to plateau so went for Maf314 and improved a bit more.
    In the meanwhile I took my amalgams out and did some chelation which helped a bit more.

    I don't think there's a safe and unique road to recovery, it seems to me more like to a trial and error process.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,890
    Likes:
    5,734
    Albuquerque
    Hi Alexa,

    4ME is the name in Europe for Nexavir, so probably a good number here are taking it under one name or another. It has another name in New Zealand. I am taking it too.

    Best,
    Sushi
  20. filfla4

    filfla4 Senior Member

    Messages:
    215
    Likes:
    138
    @ Alexa
    4ME is identical to Nexavir. I have been on it for 18 months. They changed the name/packaging a few months ago.

    filfla4

See more popular forum discussions.

Share This Page