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Kenny De Meirleir treatment

Discussion in 'ME/CFS Doctors' started by bostjan01, Dec 26, 2017.

  1. bostjan01

    bostjan01

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    I'm wondering what was treatment like for those who visited Kenny De Meirleir? Does he prescribe antivirals or rituximab also?

    I have been looking at older posts and mostly found he was treating for Lyme disease. I'm myself positive for Lyme and already received treatment by an LLMD with no success and wouldn't like to receive it by KDM again.
     
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  2. Daffodil

    Daffodil Senior Member

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    @bostjan01 how long did you have lyme treatment and how long have you been ill?

    did you feel better or worse at any time during the lyme treatment?

    demeirleir also focuses on the gut flora/leaky gut and lowering inflammation. he will sometimes prescribe antivirals depending on test results.

    he will not prescribe rituximab.

    he helped me to get from 95% bedridden to 40 - 50% functioning
     
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  3. Thinktank

    Thinktank Senior Member

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    I was misdiagnosed with lyme disease by KDM and became very sick with his treatment, being promised it would get better and i was just enduring a 'herxheimer reaction'. In fact the antibiotics were just making me sicker and sicker, leading to malaise and severe cognitive problems.
    I know patients who got worse with his treatment to a level of severe disability.

    A few years back he diagnosed nearly everyone with late stage lyme disease and prescribed ILADS treatment based on that. Now just a few new patients are diagnosed with lyme disease and instead are told they have a neuro-gut-immune disorder. The man has completely lost my trust, i don't think he really knows what he's doing anymore and is just experimenting on patients.
     
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  4. mattie

    mattie

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    I have the same experience.
    I was also misdiagnosed with lyme disease by KDM. (based on Arminlabs Elispot LTT test which has been proven to be utterly unreliable: http://forums.phoenixrising.me/inde...tary-undercover-in-german-lyme-clinics.55493/).

    Received heavy antibiotic treatment IV and oral. 0 improvements. ME symptoms got a lot worse.
    (Tetracyclines will damage your mitochondria, not good for ME)

    He told me I would be running marathons again. You cannot make such promises to severely ill ME patients.
    He also told me he is no longer comfortable with ME diagnosis.
    Thinks it is almost always Lyme disease. For sure it's always Lyme if you believe the quack diagnosis of Arminlabs.
    KDM also sells IGG food testing and recommends diet changes on this.
    IGG food sensitivity testing has been proven to be quack.
    I could go on and on. There are just so many red flags surrounding the man, his affiliations and his practice and I have seen him contradict himself way too many times.

    I believe that at best KDM treatments are highly experimental. Not at all based on solid science.
    He said: Better to do something than to do nothing. I don't agree. Neither does Hippocrates.

    Unproven treatments based on unreliable tests can and will harm patients. Physically, emotionally and financially.

    He will keep treating you indefinitely as long as you keep coming back.
    I won't.
     
    Last edited: Dec 27, 2017
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  5. bostjan01

    bostjan01

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    @Daffodil What kind of medication did he prescribe you to make you feel better?

    I've been sick for 7 years now. My worst symptom being brain fog and fatigue. I was positive on a test for Lyme disease but really this doesn't mean that borrelias (Lyme bacteria) are causing symptoms because vast majority of people keep their Lyme bacteria at bay.

    I was given combination of strong antibiotics which completely wiped out my gut flora I was having severe diarrheas and needed lots of time to repair my gut.


    So I'm thinking if anyone here was given for example antivirals, rituximab or IVIG or anything else except antibiotics by KDM? What does he prescribe apart from antibiotics? Did he tell you he doesn't prescribe rituximab?
     
    MEMum likes this.
  6. Hip

    Hip Senior Member

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    By which test are you positive for Lyme? Some tests like the ArminLabs tests seem to find nearly everyone positive: see this post.



    Have you been tested for the usual viruses linked to ME/CFS: the enteroviruses (coxsackievirus B and echovirus) and the herpesviruses (Epstein-Barr virus, HHV-6 and cytomegalovirus)?
     
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  7. Olena

    Olena

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    I am a patient of KDM for 1.5 years and I have positive LYME.
    I do not get antibiotics from him, but only herbs.
    I myself insisted on this, because I developed immunodeficiency, and I can not stand antibiotics.

    Analyzes can not find my co-infections (suspect brucellosis, rickettsia, Bartonella), as I contracted in the tropics and possibly very exotic species.

    Brucellosis was discovered by a non-traditional method (RIFE), I am good at baiting for treatment.

    Also, I constantly take apitherapy, the doctor asks to continue
     
  8. Lucky luke

    Lucky luke

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    He prescribed scig gammanorm 6ml every week.
    But i don't have lyme.
    I have high cytoxines but arminlabs was negative. Redlabs lightly positive once. Second time negative.
    Tularemia borderline positive.
    He thinks maybe that but have to test again.
     
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  9. Daffodil

    Daffodil Senior Member

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    well, i am sick going on 24 yrs. he was my last hope since i had tried almost everything else. so for me, stopping his treatment was not an option; since i was bedridden and in constant agony, the next option was suicide.

    i got very sick on the antibiotics, as i expected. due to my being sick so long, he said it would be 4 years before i noticed significant improvement. I noticed it at 3 1/2 years.

    i had taken many more dangerous drugs before, including Valcyte, Vistide and AZT (an HIV medication) so the supposed danger of long term antibiotics did not concern me.

    If you are concerned about the antibiotics, you can ask for herbal treatments. I could not tolerate the herbals; believe it or not, they were too strong for me. I couldnt tolerate even 1 drop!

    I never lived in an area where lyme disease is common, never camped, never was around animals, never bitten by a tick, was a virgin, have nothing like this in my family.

    @mattie there is no use pointing out that these treatments are experimental..ALL CFS treatments are experimental. if you can tolerate the illness and want to wait for better treatments (there are some just around the corner), then do so.

    KDM's team is still the only one who did genetic sequencing on tissue of CFS patients. He is 10 years ahead in the research. Everything I have heard new researchers say about CFS, he said years ago.

    He makes very little money except maybe in Reno for consultations. In Brussels, they have to charge very little. The infusions are done almost at cost. He spends 7 days a week researching this and treating patients. People in his immediate family have the disease. He has to put up with never ending problems from the government who has been trying to shut him down for decades because he treats CFS as a non-psychological disease.

    @bostjan01 i also had diarrhea. i took probiotics while on the antibiotics.

    a few years ago, he told me rituximab is very dangerous so i don't think he will prescribe it. there are better options on the horizon.

    KDM is far from being the only one using antibiotics to treat autoimmune diseases. Google Garth Nicholson, Trevor Marshall, the Wheldon protocol, the Stratton protocol, etc etc
     
    Last edited: Dec 27, 2017
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  10. Olena

    Olena

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    I also do injections of gammanorm, although I have very low cytokines, CD57 = 26, and this is already higher than before, the lower the number of nk cells, TNk cells and macrophages. I think this is the general concept of treatment with mesalazine, (which I do not accept)
    But I always take GcMaf.
     
  11. Daffodil

    Daffodil Senior Member

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    i should clarify... i was once at 50% but it fluctuates. right now, i am not doing well and still go through phases where i am barely 40%. this is because i was sick so long and also am in my 40's. if only i had had this treatment sooner.
     
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  12. pibee

    pibee Senior Member

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    Nice to know he charges 70 eur in Belgium but 250 eur in Slovenia for 1st appoitment, and in Slovenia of course people from poor countries come to him.

    It'd be actually cheaper for me to fly to Brussels, almost.

    I really like such doctors. A lot, very much.

    Glad he helped you though, you had Lyme or not? i didnt catch from your post.


    Waiting 4 years for gut treatment to work, sounds...well.. crazy. for Lyme, I met quite a few people personally who are 100% cured but said first improvements came after 3 years, so for Lyme it seems to be common. But, again you cant know if you're one of those..
     
  13. Daffodil

    Daffodil Senior Member

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    @pibee i didnt know what he charged in slovenia but most of the money he makes goes into research.

    before you criticise him, maybe you should consider the fact that he could work exclusively in the USA if he wanted and make tonnes more money as many other CFS specialists do. he keeps his clinic in brussels open only for the patients. he would prefer to do research only.

    he said i had lyme and that that bacteria suppresses the immune system in a particular way. who knows what i had but the antibiotics helped a lot. i am never going to be 100% cured because i had this for 20 yrs before i started the right treatment and i am older.
     
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  14. JES

    JES Senior Member

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    250 eur is still affordable if you compare to what these USA CFS/ME doctors charge though.

    I think that improvement that comes after 3 1/2 years is a bit difficult to attribute to a single cause, it's such a long time span that there could have been a big number of other factors involved. It sounds to me odd if such a slow improvement was simply from antibiotics killing the bacteria (and of course I accept that the improvement part is true).
     
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  15. Daffodil

    Daffodil Senior Member

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    @JES well the infections were intracellular and had gone pretty deep by that time....but who knows. i am 100% sure that whatever improvements i have had are due to antibiotics. when I stop them, i gradually become bedridden again.

    i got sick after mono in '93
     
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  16. ljimbo423

    ljimbo423 Senior Member

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    Hi Daffodil - I have been disabled with cfs since 1989, for 28 years now and spent several years mostly bedridden. In the last 8-9 months I have gone from a 3 on the bell scale to a 5-5.5 and continue to improve.

    I am no youngster either, I am 58 and not getting any younger.:)

    I am seeing consistent improvements month to month. My energy is up dramatically but PEM is still a problem. It seems like PEM is the last thing to go as one recovers. Which makes sense given it's the cornerstone of CFS.

    I don't think how long one has been sick has to stop one from recovering, maybe fully. :)

    Jim
     
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  17. bostjan01

    bostjan01

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    I have never heard Kenny De Meirleir would have a practice in Slovenia. He has one in Brussels, Belgium and one in Reno, Nevada, US as far as I know. Majority of expense are tests and probably treatment anyway not the consultation.

    @Daffodil I haven't been tested for any of those viral infections so it's possible I have some virus in my system.

    I was put on heavy antibiotics for Lyme and also tried natural products such as samento, banderol for Lyme and it did nothing to me it only destroyed my gut flora and had diarrheas for months because of it. Slovenia is top country for Lyme infections in the world and over 50% of population is infected but majority of people have no problem with it.

    From what I read on this forum I still haven't tried antivirals, LDN, Rituximab, GcMAF and IVIG. What's your opinion of those?
     
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  18. JES

    JES Senior Member

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    50% of ticks are infected in one part of Slovenia according to this publication, not 50% of human population, that would be insane.
     
  19. bostjan01

    bostjan01

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    50% of population according to IDSA guidlines writer who is from Slovenia. Everyone here has had ticks in their life.
     
  20. Daffodil

    Daffodil Senior Member

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    @ljimbo423 wow that is awesome. i am truly so happy to hear that. is this improvement a result of some treatment?
     
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