Dr. DeMeileir's patient, anyone?

Discussion in 'Fibromyalgia Main Forum' started by cherylsue, Jan 26, 2007.

  1. cherylsue

    cherylsue Member

    I was wondering if anyone here on this board is being treated by Dr. Kenny DeMeileir or is on his protocol?

    I would appreciate if you would share your protocol, supplements, treatment, etc. with us.

    Thanks for your input.

    CherylSue
  2. foxglove9922

    foxglove9922 New Member

    Bumping as I saw this slipping to page 3. What a fast moving board today.

    Foxglove
  3. cherylsue

    cherylsue Member

  4. karinaxx

    karinaxx New Member

    i am back from my first visit from Dr.Meirleir and so far have to wait for all the test results for myself and my son.
    once i have them i will update my visit and treatment recom. here.
    but in the meantime if you have some specific questions, go ahead and ask. will try to answer , if i can.
    karina
  5. cherylsue

    cherylsue Member

    Thank you for your response. I have been following Dr. DeMeirleir progress with RnaseL and subsets of CFS. I identify with Dr. DeM's Group Profile 1:

    "These patients have a chronic low grade viral infection and inflammatory reaction in the brain. Many mocroorganisms are associtated with this profile. Heavy metals, pesticides, and other triggers may also be involved. Approximately 20 percent of this group has low grade Herpes Virus 6A encephalitis.

    The prominent feature is neurocognitive problems such as confusion and impaired concentration and memory. Fatigue originates in the brain. Pain is not prominent. Patients exhibit symptoms that have some similarities to MS."

    Dr. DeMeirleir mentions that he has a treatment plan for each profile. I can guess he has a detox plan for this group, but what other ways does he treat this profile? I'm trying to get his most up to date ideas. I know he cowrote a book about 5 years ago. However, in light of the new research, what else does he do?

    I'd appreciate your sharing of ideas.

    Thanks so much.

    CherylSue
  6. mezombie

    mezombie Member

    who is also one of his patients.
  7. cherylsue

    cherylsue Member

    Thanks for the websites. I did read what Carlos had to say. However, his symptoms seem womewhat different from mine.

    Have you ever tried Nexavir? What was your experience with it? I'm on it now. It did help me move from one plateau to another, but I expected more.

    Thank you.

    CherylSue
    [This Message was Edited on 03/29/2007]
  8. karinaxx

    karinaxx New Member

    ok, here i am.
    i had only a very short time with him, his waiting room was full of people and he was leaving the next day to australia.
    i am familiar with his subgrouping, but cant say much about how he treats these groups.
    i am also with MS symptoms, but i have to wait and see the test results.
    i asked him about the nexavir gel for my son and he responded that the injections help better, but for my son we could possible try the gel.
    other than that we discussed his new findings, that HHV-7 is causing the mouth ulcers my son and i had and he will publish this soon.
    the other important tests he does is the fruit sugar intolerance and lactose intolerance and both my son and myself showed positive for that(fruit sugar int.). but this alone will not show the whole issue , because with it liver function and kidney function is tested. a serious fruit sugar intolerance can damage the kidney and liver , but many just have the light one. it also can lead to bacterial over growth and cause leaky gut and severe stomach problems.
    i dont now so much about it and have to wait and sees what he says about it in combination with the other test results.i did not have the time to google about this topic seriously.
    i am sorry, cant tell you what "protocoll" he follows with each group, but i think from what i got, he treats the infections as they show up, not necessaraly as groups, more individual. different infection with the appropriate meds.
    but, as i said, can tell you more after i got the results.

    he seems to be very sure of categorizing symptoms with what test he is doing, but he did order the tests which i would have done with my son and myself, after looking at each syptoms we had and the symptoms usually caused by these different pathogens.
    i think that a good AIDS specialist will be able to do the same, since most of those infections turn up also in AIDS patient or other immune compromised patients.

    he also tested for some molds , toxins and NK cells.

    all these test are costing a huge amount and i cant say yet if it is worthwile.

    he certainly seems to know a lot, how much money he makes on these tests i dont know, since these tests are done by red lab and other labs, plus his own lab.

    overall, it was a relieve just to find a doc which knows about CFIDS as much as he does and i think for my son it was very important, since it is very difficult to get a child so young diagnosed in Europe.

    i think that was not much help for you,but i promised i would update, so thats it.

    take care karina

    excuse the not so clear writing, i am very tired tonight.






    [This Message was Edited on 03/29/2007]
  9. cherylsue

    cherylsue Member

    Thank you very much for your reply. so, he thinks like Dr. Teitelbaum, that the injectible Nexavir works better than the gel. Interesting. There isn't a concensus yet among these CFS docs yet. I've been on the gel form form almost 2 months, but have seen only modest improvement.

    Rich Carson just posted about DeMeirleir and the FOS sugars. I don't have that problem, but my husband may, although he doesn't have CFS yet.

    Thank you so much for sharing. You and your son will be in my prayers. Good luck.

    CherylSue
  10. karinaxx

    karinaxx New Member

    have you done the breath testing for fruit sugar?
    it was funny with me, because i was connvinced that i will not show positive, i ate a lot of fruits and thought i felt good wtih it.
    funny to see how wrong one can be about oneself and symptoms......

    i will let you know more, once i have the report from him.

    thanks for all the well wishes
    karina
  11. cherylsue

    cherylsue Member

    No, I haven't been tested for FOS sugars. How do they do that?

    Thanks,
    CherylSue
  12. karinaxx

    karinaxx New Member

    the test is done with a breath test over three and half hours. you have to come on empty stomach and than you get fruit sugar solution and have to breath into a pipe, they check the levels every half an hour.
    if the levels rise in these three hours, it will show malabsorbtion of the fruit sugar in your stomach.

    by
    karina
  13. zipk

    zipk New Member

    Hi:

    What are they measuring in the breath? The actual sugar? or the gasses (hydrogen/methane) they produce when mixed with bacteria in the gut? I've had a similar test.

    Thanks,
    Zip
  14. wrthster

    wrthster New Member

    Karinaxx,

    I did not know that he see's patients? Can you tell me what his general protocol is and does he have a web site? Also, how do you inquire as to how to become a patient of his? Do you happen to have his office phone? Thanks very much for your help.
  15. karinaxx

    karinaxx New Member

    i am not able to answer yout question about the breath test. as i said, it is also relativly new to me and i will have to ask Dr.Meirleir if i have the chance.
    there is some information on the site here about it, other than that i think googling it will bring some answers.
    sorry
    karina
  16. karinaxx

    karinaxx New Member

    yes, he sees patients in Brussels in his clinic.
    i dont know how he manages that, he seems to be in another country every week.
    this is one of the points i have some concern, since he seems to really dont have enough time to handle this all.
    but as i said before, he knows so much and has been seeing ME/CFS patients for so long, he seems to have a good routine.
    for his protokol, well, i think his main concern are the immune and the gut problems arising in cfs.
    he calls it cleaning up the infections , treating with ABX and Antivirals,probiotics, detox for heavy metals, after he has tested you for all of this.

    i have his number, will look it up a bit later.

    karina
    by the way, found your post about adrenal support very interesting.
  17. karinaxx

    karinaxx New Member

    here is his phone number and adress:
    02 2668740
    Himmunitas VZW
    De Tyraslaan 111
    1120 Neder-over-Heembeek

    karina
  18. cherylsue

    cherylsue Member

    Will you be detoxing? What does Dr. DeM use for detoxing? Also, what antivirals does he use besides Nexavir?

    The pieces are starting to fit. I think you have a very good doctor who is getting to the bottom of things. I think in a few years there will be even more hope for us to put us into longer remissions.

    Thank you so much for sharing. God bless you and your son for a speedy recovery.

    Hugs,

    CherylSue
  19. karinaxx

    karinaxx New Member

    right now i am waiting and i will see.
    i have some concern about some of the detox methods used and some of the treatments used by him, out of personal bad experience.
    i wrote about the use of ABX a few times and there is a big post about it under my profile.
    there is also something about the detox chelators in it, if your interested.
    you have to scroll back a few month under my profile.

    about the Antirivarals used by him i dont know much more, i think that depends largly on the infections tested positive and the patients history.

    take care karina

    i use some Ayurvedic herbal stuff and i am plainning to combine all of it, once i have my results in.




    [This Message was Edited on 03/31/2007]
  20. cherylsue

    cherylsue Member

    I'll check it out.

    CherylSue