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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

My Prof De Meirleir patient experience...

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Tony, Aug 1, 2009.

  1. Tony

    Tony Still working on it all..

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    Great to hear you're improving Beady! Good sleep is such a great thing to get!

    From what I remember, Cheney has said that rivotril is a nitric oxide scavenger and also acts on the brain to put it into a relaxed state so sleep can happen. This helps the neurons to calm down from being "over excited" and firing off too much.
    By neurological attacks, if you mean difficulty in dealing with noise and light sensitivity then it may help some with that too. Sorry, I'm not much help, except to say that at 500mcgs I've had no side effects with rivotril. Might be a different story if I can ever go off it...very slowly of course...
  2. Beady

    Beady

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    Thanks for your answer Tony. Yes, it is really wonderful to sleep normally again :)

    The mobilizing feeling is also as good as gone in my body/brain. I relax well, and fall asleep immediately. It must be something else dr. DM has in mind... He is a great person, and a fantastic doctor, but I would have preferred him a bit more communicative about how he is thinking. Not that I dont trust him, it is just that I am a kind of person that would feel so much more comfortable with such drugs if I could get some info and explanation on how it is supposed to help my body

    I am very sensitive to medicines and supplements, even the innocent ones I feel that I have to give it some more thought and discuss it with a couple of local doctors that knows my body well before starting this one.

    The neurological attacks are probably more related to things like MS or Parkinson than the most common ME-cases... It combines and intensifies all neurological symptoms at once. Muscles are twitching, a kind of shaking on the inside, a kind of dizziness that feels like falling trough the mattress or rolling out of the bed even though I am lying completely still, and so on. Not able to focus the eyes and sound/light sensitivity intensifies. The attacks can last up to 2 hours. Sometimes it also includes complete paralysis of the body lasting up to 30 minutes.
  3. Tony

    Tony Still working on it all..

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    It would be great to get to talk longer with KDM but the appts aren't very long and he's very focused on symptoms, exposures etc as you know. In fairness, he can see more people that way.
    He has a patient seminar on one night this visit so I may pick up some things there.
    I used to get some internal "shaking" as you describe it years back, it was so weird.

    I wonder if you could trial the rivotril and taper off very slowly if you don't like it? Good luck with whatever you decide.
  4. Beady

    Beady

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    Thanks for your answer, Tony. It helps seeing things from another perspective. :)

    I found an old Cheney article on Prohealth:
    http://www.prohealth.com/library/showarticle.cfm?libid=8021

    Seems like it is connected to neurotoxins Maybe KDM focuses on this drug because of his recent H2S-research and neurotoxin focus?
  5. dannybex

    dannybex Senior Member

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    What Cheney leaves out...

    ...in that old article on Klonopin (Rivotril) is that it is the only benzodiazepene that can cause anemia, neutropenia, and leukopenia. These may take years to happen, but they can, and did in my case...and I'm still trying to recover...a year and a half later.

    How can one have a strong immune system if they develop anemia and low white blood cell counts? -- that's the question I'd ask Dr. Cheney, the question he's never talked about, and perhaps, just perhaps one of the reasons for his low 'success' rate with patients.

    And despite his denials, while some can taper off of benzos without too much trouble, for many it can be very, very difficult to get off of klonopin, so if I were you, I'd try to take it maybe 2 nights, then skip a night...or maybe every other night. Try and take breaks so a dependency (or tolerance) doesn't develop.

    Don't want to rain on anyone's parade as sleep is indeed very important...just thought this information should be out there. :)

    Best regards,

    Dan
  6. Beady

    Beady

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    Thank's Dan. It is important that all kinds of experiences get out there - very helpful to see all sides before making an decision.
  7. Tony

    Tony Still working on it all..

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    Yeah, fair points Dan. I have a slightly low white blood cell count so it could be the rivotril. I didn't get many colds or the flu for several years but in the last two years I've gotten a couple of colds.

    I've been on rivotril for many years now. For me it's the difference between sleeping or not, though I suppose other drugs may be effective too.
    I'm thinking that KDM has been using rivotril for a while as I'm guessing it's the "old anti-epileptic" mentioned in this lecture summary.

    http://www.nutritional-healing.com....ber 2007 talk on CFS by Dr. Kenny De Meirleir
  8. Victoria

    Victoria Senior Member

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    Hi Tony,

    first of all I'd like to sincerely apologise for not acknowledging your post of the 11th August. Back then I was fumbling around the Forum not realising that I had to subscribe to a thread (to know when my post was answered by someone).

    I'm still fumbling around, (but at least it's at home).

    I was originally sent to Dr Danny Lewis by my GP a couple of years ago. His intitial consultation was very, very good & he went into great depth taking my health history. I was most impressed with that.

    But not with the course he sent me to at Cedar Court Rehab. Their initial consultation was good, but as I have to work full-time I had to do the OT/PHYSIO etc after work. The physio insisted on ice on my lumbar back pain (which just made the pain from my 3 slipped lumbar discs worse). The 6 week course was not only too hard on my, then, low energy levels, but I was so appalled at the 10mins treatment & lack of care by the night physio, I quit after the second session, with the excuse that I couldn't make the round 3 hour trip by public transport (& getting home at around 8.00pm made it a 12 hour day (including my work time).

    I saw him for a follow up, placed a formal complaint about the night staff at the Rehab Centre (who I might add sent me to watch some spinal film & then totally forgot about me, leaving me all alone in a gradually darkening & deserted building at night).

    12 mths later when my FM pain/fatigue got worse again, my GP referred me back to him.

    He said "unless I cut down my working hours & got some therapy he couldn't help me". I had already gone through this conversation on my initial visit saying I had to work full time to support myself and could not take time off work (or cut down my working hours).

    So for the (then increased fee) of $230 (on the 3rd visit), he spent exactly 5 minutes saying he couldn't help me. I was annoyed that he wasn't willing to talk about my situation or offer some alternatives. I just did not have the money OR was in a position to cut my working hours. So I never went back to see him again.

    At this stage, I am doing so well via diet, supplements/herbs & a few alternative therapies that I've put together through my own research/reading, that I am reluctant to seek any further specialist advice (except for my lumbar disc & heart problems).

    I guess it all boils down to money (or lack thereof) and the fact that I had taken so much time off work in 2004 & 2005 that I was at risk of losing my job (which would have been disastrous), if I kept taking time off.

    He did suggest a meditation course, but I would have had to catch taxis there & back on a week night, so once again I had neither the money or energy to go to this. It would have worked out to be about $600 for the course & taxis, & at that time I didn't have $60 let alone $600.

    But I must say, I am pleased that you had success with him, and you're doing much better these days. I hope that this success continues & you improve even more.

    I suspect that when I last saw him, I was totally fed up with the medical establishment (except for my wonderful GP) that any consultation would have been reluctantly followed through.

    You must have wondered why I didn't reply back in mid August.

    Victoria
  9. Tony

    Tony Still working on it all..

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    Another Dr Lewis!...

    Hi Victoria,

    I see a different Dr Lewis...Dr Don Lewis, not Danny.

    He doesn't send anyone to rehab clinics...he's seen many try that route and often come back worse.
    I wasn't wondering about you replying...you asked, I answered, so all fine here, no apology necessary...:)
    Besides, with drained brains we can all screw up little things pretty easily, so if you don't answer me I'll just call you by a colorful colloquial, ;). I'd expect nothing less in return.

    Cheers...:)

    PS. I use the "New Posts" function to keep up each time I log in.
  10. shrewsbury

    shrewsbury member

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    Hi Cort I find I can handle all goat milk products - cheese. yogurt and the milk itself + actually love the taste
  11. Tony

    Tony Still working on it all..

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    @nd appt with my Doc and the Prof...

    Late October I had the 2nd appt with my Doc and the Prof. The blood results from Redlabs showed that I dont have high viral levels to EBV, HHV6/7 or CMV. Theyre either zero or very low. No real surprises for me there.
    Elastase expression is at 14 (ref range 0-150). (Neutrophil/white blood cell activation).
    CD14 at 4954 (ref range 2800-5000) indicated that leaky gut is just holding. I wish my gut knew that...

    NK cell activity is at 340 (ref range 250-750).

    There is some constant macrophage activation in regards to:
    IL-8, high at 195 (ref range 0-70)
    IL-10 high at 94 (ref range 10-80). So theres some battle going on. Just what that battle is, I dont know. Perhaps undigested food causing immune activation.

    Some proinflammatory cytokines were high.
    TGF was high at 36 (ref range 0-30)
    MIP in the high end of the range at 45 (range 10-50).

    I only have a very basic understanding of this but it shows there is immune dysfunction. Again, nothing really new, but its good to have the test results and the beginnings of a plan.

    The Profs idea is to add d-ribose and soon some liposomal glutathione.

    The other thing he says I have to do at some point is to get the amalgam fillings removed, but not just yet. He has a plan on how to go about it that my doc will likely explain next visit. He doesnt suggest this to everyone, just those he sees that have a problem. I did a Melisa mercury test that showed positive to methylmercury 11 and a low positive to the H2S test.

    So its all interesting and exciting and the only way to know is to go ahead and see what happens down the rabbit hole...
  12. Tony

    Tony Still working on it all..

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    So my plan for the next 4 months....
    Stick to the same low fructose and casein diet. Add d-ribose (it gave me a nice lift the first few days but not so noticeable now...)
    Month 1 Antibiotic each day.
    Month 2
    Antibiotic (enteric coated) for 10 days, followed by probiotic SB Flor Activ for the rest of the month.
    Month 3 is the probiotic every day.
    Month 4 repeats month 2.

    Additionally, inject Nexavir daily, add Chlorella, N Acetyl Cysteine (enteric coated) and continue with everything else.

    Any suggestions on where I can get enteric coated NAC? Im considering liposomal glutathione...I'm waiting on some clarification on this from the doc.
  13. busybee

    busybee Senior Member

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    Hi Tony,

    I found one supplier of NAC

    I would like to know if anyone has suggested the mechanism between the bacteria and the shoulder and neck pain/inflammation. (Mine has faded since giving up dairy but still flares up when I crash).

    Also are you using the probiotic SB Flor Activ instead of VSL3 because of your specific overgrowth?

    Thanks for keepng us informed.

    Bx
  14. klutzo

    klutzo Senior Member

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    Nac

    I am wondering why you were told to take NAC. I thought it was able to cross the blood-brain barrier and that it mobilized mercury and moved it into the brain. That is why I stopped taking it. Ditto for alpha-lipoic acid.

    Does anyone know if this is wrong? I would like to take NAC, since I think my liver is stressed, but I am afraid to.

    Thanks for any current info on this,

    klutzo
  15. Tony

    Tony Still working on it all..

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    Thanks Busybee :) I found that one after a better look too! It's the only one I could find on the net!

    The SB Flor Activ is meant to promote the "good guys" bacteria such as bifido. I think that the VSL#3 has some d lactate producing bacteria in it?

    It's meant to be more suited to me as I have high strep, prevotella and low bifido.
    My Doc and KDM choose the probiotics per patient rather than the same for all.

    Klutzo, I don't know the answers. I can only say that KDM and my doc are aware of my profile re mercury and that's the recommendation. NAC is a precursor to glutathione so that's how I understand the reasoning for it.

    I had a bad experience taking NAC some time back at 600mg 3x per day. Once per day was fine. It could well be that it needed to be enteric coated to get to the small intestine instead of being released in the stomach. That's my guess...
    I'll be going even more slowly this time.

    Those are some really interesting questions though...we need them in the treatment section where hopefully someone will clue us in.
  16. Tony

    Tony Still working on it all..

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    One month on and the azithromycin seems to have helped. My breathing has improved a bit so it could have kicked the Chlamydia Phn good and hard. I had a low level bronchial type breathing that I noticed sometimes at night, nothing dramatic. I felt like it was just a “background noise symptom” really, compared to everything else. But I do notice that I breathe a little better, a little cleaner now throughout the day. So a victory there. Huzzah, huzzah! The only side effect was a bit of left ear soreness. I hope that’s my brain rebooting...
    Started the Nexavir just prior to xmas and started slowly at 1ml per day, then 1.5 and today 2ml. Sleep seems to be a little better but hard to tell over such a short time. One 30 degree night I slept pretty well and woke feeling better than I would have thought. In summers past I’d not done that before on very hot nights. They’re often a trial as I’m sure many can attest. Be interesting to see how I go over any more hot summer nights.

    The chlorella took a little bit to get a handle on. Too much gives me “dire rear” but one per day seems about right for me.
    So nothing dramatic to report, the energy levels are still up and down and today is relatively good, so my view is even more optimistic...:) I love the idea of wellness...:)
  17. ukme

    ukme Senior Member

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    Hi Tony, how are you getting on 6 month's on? Would be interested to hear how things are going if you are able to share.
  18. Tony

    Tony Still working on it all..

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    Hi ukme, this thread got duplicated here back in August. I've updated some info since then here.

    I'll keep updating as time rolls on. Nothing major to report but I do feel a tad better in some ways, just not all the time. The Prof reckons it takes about 6 months to start seeing results. I've only been on the Nexavir since Xmas so I expect to be fully healthy in about, er, 3 days? lol...well I can stay in the land of hope and anticipation...:)
  19. Hysterical Woman

    Hysterical Woman Senior Member

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    lol, Tony, we all want to be in that land of hope and anticipation.

    HW
  20. michal

    michal

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    Hi
    I am also the patient of de Meirleir.
    My experiences are:
    I take his treatement for 4 months. I can say that I improved 30-40 %. I have cfs for about 9 years. 7 years I tried to fight with this sickness very activly - I worked, I did a lot of sports.... But after 7 years I was so tired that i finished for 6 months in bed. I was just able to make 10-20 minutes of walk a day and to check my computer for 1-2 hours. Then I started to recover slowly and I found a possibility to visite the proffesor even if its 1000 km form my city. He just found all the problems like leaky gut, food intolerance,....Now I can say that after 4 months of his threatement I can walk 1,5 hour, i can sit 4 hours behind my computer. Ok, i cannot say 100 % that its because of his treatement because also before I felt slowly little bit better but I think with his threatement it went much faster. Now, I am thinking to start to work some hours a day. My biggest problem now is, that I am not so tired like before and I feel just fine but I have the biggest problem with my heart - if I do more - then I dont feel good, I feel heart weakness and then I have to stay in bed for some hours. The heart tests war Ok untill now so I dont know why its like this but I will ask him when I will be next time in Brusel.
    And on the end I have 2 questions:
    So I would like to ask you if someone has also the same problem with heart and if someone has a type to fight against.
    And if you dont have some side effects by taking Nexavir - I always feel a bit dizzy for some hours

    Its great to share the experiences
    Ok, hopefully you can understand my bad english - take care

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