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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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My Prof De Meirleir patient experience...

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

  1. aniceboy

    aniceboy Guest

  2. aniceboy

    aniceboy Guest

  3. Kenny de Meirleir experience

    I was prescribed lamictal by my doctor who is working with Kenny. Apparently I have a problem with the sodium channel. Kenny's theory is that the problem with RnaseL causes the channelopathy. The lamictal works very well for me - I'd be bedbound without it. I take 12.5 mg 4 times a day.

    Jane
     
  4. Kenny de Meirleir experience

    I was prescribed lamictal by my doctor who is working with Kenny. Apparently I have a problem with the sodium channel. Kenny's theory is that the problem with RnaseL causes the channelopathy. The lamictal works very well for me - I'd be bedbound without it. I take 12.5 mg 4 times a day.

    Jane
     
  5. caledonia

    caledonia

    Messages:
    2,980
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    1,579
    Cincinnati, OH, USA
    Jane - methylation supplements reaction

    The methylation supplements will cause detox to restart. When the toxins come out, they can make you feel worse. You need to back off to a level that you can handle comfortably.

    I'm taking Folapro (folinic acid) at the rate of 1/264 of one pill per day, because that's all I can handle. I crushed the pill into powder, then got some empty gel capsules from the health food store and kept dividing the powder in half until I arrived at an amount I could tolerate.
     
  6. caledonia

    caledonia

    Messages:
    2,980
    Likes:
    1,579
    Cincinnati, OH, USA
    Jane - methylation supplements reaction

    The methylation supplements will cause detox to restart. When the toxins come out, they can make you feel worse. You need to back off to a level that you can handle comfortably.

    I'm taking Folapro (folinic acid) at the rate of 1/264 of one pill per day, because that's all I can handle. I crushed the pill into powder, then got some empty gel capsules from the health food store and kept dividing the powder in half until I arrived at an amount I could tolerate.
     
  7. Tony

    Tony Still working on it all..

    Messages:
    359
    Likes:
    41
    Melbourne, Australia
    Hi Jane,

    I'm hoping that more patients of the well known researchers/doctors will also post profiles. ME/CFS is so diverse. I'd like to ask a couple of things...

    Where did you get your EBV and HHV6 etc titres measured?
    And what did your dysbiosis look like previously and what fixed it? Good one!

    The Lamictal has been great for me as well. The shattering headaches no longer happen and it seems to help all round.
    I'm taking folic acid, but thinking the folinic is a better bet. Any tips on brands? I get most of my stuff from iherb.

    Cheers
    Tony
     
  8. Kenny de Meirleir experience

    Hi Caledonia

    Thanks for your reply. I really overdid it then with the folinic acid I took a whole one. The brand I used contains the same amount of folinic acid as FolaPro. How do you work out that you take 1/264 of a pill? It sounds like I should be starting on a very low dose as I had a really bad reaction.

    Hi Tony

    I got my EBV and HHV-6 titres through a laboratory in Melbourne called VIDRL Victorian Infectious Diseases Reference Laboratory. The problem is that they usually dont report IgG titres, as they dont believe that there is any relevance. Kenny told me during my appointment with him that there is now an agreement amongst the CFS researchers/doctors that treat viruses to treat HHV-6 when the IgG titre is 640 or above. Dr Montoya at Stanford treats EBV when the Early Antigen titre is 360 or above.

    Its a hassle getting VIDRL to report these titres. They do have them, they just need to be persuaded to give them to you. Youll need a doctor to help with that. Dr Lewis has done it for me, and Ive also got another GP to do it for me as I know how busy Don is.

    About the dysbiosis, before treatment I had massive overgrowth of just about everything. This is actually the second time Ive treated dysbiosis. The first time I used an antibiotic that doesnt get absorbed from the gut. Its called Bacitracin and I needed 2 courses of it and it worked amazingly for me. Don prescribed it for me, but has had mixed results with his patients. After a year of antibiotics to deal with intracellular bacteria, the dysbiosis came back and this time I treated using antimicrobial herbs. The product I used is called Paracea Forte. Its a Bioceuticals product. As far as probiotics go, I used to use VSL-3 which Kenny recommended. I dont know if he still recommends this as it contains lactic acid producing bacteria perhaps this is something to ask Don?

    Folinic acid I got a product called MegaFolinic from iherb.com. Or FolaPro can be ordered from holisticheal.com.

    Jane
     
  9. Kenny de Meirleir experience

    Hi Caledonia

    Thanks for your reply. I really overdid it then with the folinic acid I took a whole one. The brand I used contains the same amount of folinic acid as FolaPro. How do you work out that you take 1/264 of a pill? It sounds like I should be starting on a very low dose as I had a really bad reaction.

    Hi Tony

    I got my EBV and HHV-6 titres through a laboratory in Melbourne called VIDRL Victorian Infectious Diseases Reference Laboratory. The problem is that they usually dont report IgG titres, as they dont believe that there is any relevance. Kenny told me during my appointment with him that there is now an agreement amongst the CFS researchers/doctors that treat viruses to treat HHV-6 when the IgG titre is 640 or above. Dr Montoya at Stanford treats EBV when the Early Antigen titre is 360 or above.

    Its a hassle getting VIDRL to report these titres. They do have them, they just need to be persuaded to give them to you. Youll need a doctor to help with that. Dr Lewis has done it for me, and Ive also got another GP to do it for me as I know how busy Don is.

    About the dysbiosis, before treatment I had massive overgrowth of just about everything. This is actually the second time Ive treated dysbiosis. The first time I used an antibiotic that doesnt get absorbed from the gut. Its called Bacitracin and I needed 2 courses of it and it worked amazingly for me. Don prescribed it for me, but has had mixed results with his patients. After a year of antibiotics to deal with intracellular bacteria, the dysbiosis came back and this time I treated using antimicrobial herbs. The product I used is called Paracea Forte. Its a Bioceuticals product. As far as probiotics go, I used to use VSL-3 which Kenny recommended. I dont know if he still recommends this as it contains lactic acid producing bacteria perhaps this is something to ask Don?

    Folinic acid I got a product called MegaFolinic from iherb.com. Or FolaPro can be ordered from holisticheal.com.

    Jane
     
  10. Tony

    Tony Still working on it all..

    Messages:
    359
    Likes:
    41
    Melbourne, Australia
    Thanks very much Jane, great info...:) Paracea Forte worked amazingly well then! Of course I'm now wondering if it would do the same for me...it's worth a shot.
    I've ordered the Source Naturals 'Megafolinic' at iherb. It will be interesting to see if I notice anything from the 5mg Folic acid I take now.

    What did you notice as far as improvements when you fixed that problem? I'm guessing things like nausea, headaches, maybe?

    Another of KDM's patients posted that the type of probiotics prescribed depends on the patient profile. Sometimes VSL#3, and or Mutaflor, Probiotic Pearls (Nutrisan).
    http://aboutmecfs.org/blog/?p=633
     
  11. Victoria

    Victoria Senior Member

    Messages:
    1,371
    Likes:
    130
    Melbourne, Australia
    Tony,

    your experiences & testing interests me greatly.

    The more I read of experiences on these blogs, the more suspicion I have that my diagnosis of Fibromyalgia in May 2006 is not the whole story.

    I can identify with so many symtoms of CFS as well. I know many physicians believe the two syndromes overlap (while some believe they are two names of the same thing).

    Many symptoms which my GP & I have automatically connected to my 3 prolapsed discs in Sept 2005 actually mirror those of recents CFS posts. Eg in recent weeks, my right leg keeps giving way for no obvious reason when walking. It's like the surgically trimmed back lumbar disc has bulged out again & is cutting the circulation & blood supply to the sciatic nerve. The bulk of this disc was surgically removed in June 2008. But the actual feeling of this seemingly paralysed right leg also mirrors that on a recent post. But it doesn't last long. Around Christmas 2007, I kept dropping things (no cups & saucers left at home now) - I solved this problem with squeeze ball exercises every day for 3 weeks. The tingling or numbness in my fingers/hands have virtually gone now.

    There is also my lactose intolerance, gluten sensitivities (the colonoscopy in Feb 2004 revealed no cealiac disease), thyroid issues my GP keeps ordering tests (the Endocrinologist said all my thyroid tests were normal in Nov 2006), MCS & a multitude of other symptoms which have actually never been completely assessed properly because I've gotten so used to them that I never realised they were abnormal until I starting reading the Blogs on THIS site.

    ProHealth & other sites viewed over the last 3 years never really hit home to me how many symptoms I really have.

    Since it was a muscular/skeletal physician who did the nerve blocks on my chronic lumbar pain who finally made the FM diagnosis (after testing my tender points & take a more thorough history), I wonder if I should go further with more tests & diagnosis.

    I was so disappointed with the Rheumatologist who specialises in FM (who really didn't seem to know that much compared to what I've read on US & UK websites) who I saw a couple of times. He referred me for a six week course of physio, OT etc (where I was so disgusted with the attitude of the therapists I only went 3 times). I got only about 10 minutes treatment for the 2 1/2 hours it took me to get there after work, treatment & then get home around 8.00pm at night. I was so exhausted at the time, & having seen many physios over the years for treatment of injuries/surgeries, knew almost straight away they were lazy & incompetent. I couldn't get through to them that my lower back pain was so excruciatingly painful I couldn't do the exercises they demonstrated.

    What was really annoying was that I used to do many of these exercises some years ago - every morning ie over 30 stretches X some 600 repetitions. I used to power walk about 10 hours per week. Back in early 2003, I was probably more flexible & fitter that your average athlete. I had been to several excellent physios after ankle surgery & other ortho solf tissue injuries, tennis elbow (which was probably FM now that I know so much). I could never make these "Rehab" therapists understand that I used to do all their exercises & couldn't do them any more. They thought I wasn't trying. And the main physio assigned to my case put an ice pack on my lower back which only illicited more pain. She didn't believe me when I said a heat pack (or hot water bottle) worked better for me. She claimed that she knew best.

    I am wondering if I should follow your lead getting the fructose malabsorption tests & so on.

    But then, I would start the whole medical/financial roller coaster again & as I haven't yet paid off my two lots of back surgery last year, wonder if I should embark on a new round of financial debts.

    How did you start your search for an accurate diagnosis? How did you choose your doctor?

    Since we both live in Melbourne, it makes sense to direct my questions to you.

    Perhaps you've already typed your story & I've missed it. Working full-time & making brief scans of the blogs before I leave work leaves me a little short on who & what has happened during each day's posts.

    As I discussed with Jody (off line), I think alot of my symptoms have cleared up by diet & supplements. Even the vitamin D recommended by my Endocrinologist in Nov 2006 seems to have made substantial improvements.

    Is your local doctor the key to your diagnosis, or some other doctor which you had read about & subsequently followed up?


    Victoria
     
  12. Victoria

    Victoria Senior Member

    Messages:
    1,371
    Likes:
    130
    Melbourne, Australia
    Tony,

    your experiences & testing interests me greatly.

    The more I read of experiences on these blogs, the more suspicion I have that my diagnosis of Fibromyalgia in May 2006 is not the whole story.

    I can identify with so many symtoms of CFS as well. I know many physicians believe the two syndromes overlap (while some believe they are two names of the same thing).

    Many symptoms which my GP & I have automatically connected to my 3 prolapsed discs in Sept 2005 actually mirror those of recents CFS posts. Eg in recent weeks, my right leg keeps giving way for no obvious reason when walking. It's like the surgically trimmed back lumbar disc has bulged out again & is cutting the circulation & blood supply to the sciatic nerve. The bulk of this disc was surgically removed in June 2008. But the actual feeling of this seemingly paralysed right leg also mirrors that on a recent post. But it doesn't last long. Around Christmas 2007, I kept dropping things (no cups & saucers left at home now) - I solved this problem with squeeze ball exercises every day for 3 weeks. The tingling or numbness in my fingers/hands have virtually gone now.

    There is also my lactose intolerance, gluten sensitivities (the colonoscopy in Feb 2004 revealed no cealiac disease), thyroid issues my GP keeps ordering tests (the Endocrinologist said all my thyroid tests were normal in Nov 2006), MCS & a multitude of other symptoms which have actually never been completely assessed properly because I've gotten so used to them that I never realised they were abnormal until I starting reading the Blogs on THIS site.

    ProHealth & other sites viewed over the last 3 years never really hit home to me how many symptoms I really have.

    Since it was a muscular/skeletal physician who did the nerve blocks on my chronic lumbar pain who finally made the FM diagnosis (after testing my tender points & take a more thorough history), I wonder if I should go further with more tests & diagnosis.

    I was so disappointed with the Rheumatologist who specialises in FM (who really didn't seem to know that much compared to what I've read on US & UK websites) who I saw a couple of times. He referred me for a six week course of physio, OT etc (where I was so disgusted with the attitude of the therapists I only went 3 times). I got only about 10 minutes treatment for the 2 1/2 hours it took me to get there after work, treatment & then get home around 8.00pm at night. I was so exhausted at the time, & having seen many physios over the years for treatment of injuries/surgeries, knew almost straight away they were lazy & incompetent. I couldn't get through to them that my lower back pain was so excruciatingly painful I couldn't do the exercises they demonstrated.

    What was really annoying was that I used to do many of these exercises some years ago - every morning ie over 30 stretches X some 600 repetitions. I used to power walk about 10 hours per week. Back in early 2003, I was probably more flexible & fitter that your average athlete. I had been to several excellent physios after ankle surgery & other ortho solf tissue injuries, tennis elbow (which was probably FM now that I know so much). I could never make these "Rehab" therapists understand that I used to do all their exercises & couldn't do them any more. They thought I wasn't trying. And the main physio assigned to my case put an ice pack on my lower back which only illicited more pain. She didn't believe me when I said a heat pack (or hot water bottle) worked better for me. She claimed that she knew best.

    I am wondering if I should follow your lead getting the fructose malabsorption tests & so on.

    But then, I would start the whole medical/financial roller coaster again & as I haven't yet paid off my two lots of back surgery last year, wonder if I should embark on a new round of financial debts.

    How did you start your search for an accurate diagnosis? How did you choose your doctor?

    Since we both live in Melbourne, it makes sense to direct my questions to you.

    Perhaps you've already typed your story & I've missed it. Working full-time & making brief scans of the blogs before I leave work leaves me a little short on who & what has happened during each day's posts.

    As I discussed with Jody (off line), I think alot of my symptoms have cleared up by diet & supplements. Even the vitamin D recommended by my Endocrinologist in Nov 2006 seems to have made substantial improvements.

    Is your local doctor the key to your diagnosis, or some other doctor which you had read about & subsequently followed up?


    Victoria
     
  13. Tony

    Tony Still working on it all..

    Messages:
    359
    Likes:
    41
    Melbourne, Australia
    Hi Victoria,

    After I was ill for about 3 months my local GP (MD for the USA folk) said "I think you have CFS. I've tested for everything I can think of and nothing shows up. I can't really help you. I'll try to find someone and you might want to as well, as I don't know anyone who treats this."

    I then discovered the Victorian ME/CFS society in the white pages, thinking there must be a group or something. I joined straight away. Eventually I discovered Dr Lewis http://www.cfsdiscovery.com.au/index.html from a taped lecture the Society was selling. I liked what I heard; he was at least hopeful. I had to wait 3 months to see him back in 2002. He's been able to help with the worst of it.

    I'm about 30% functional but at least I no longer have the shattering headaches. OI and cognitive dysfunction are markedly reduced. And I sleep better.
    $'s is an issue for testing. Fructose and lactose breath tests are $80 each and take approx 2 hours each. They need to be done on separate days. You can get any doc to organise these, just tell 'em what you want done, either or both. Box Hill Hospital and a company in East Malvern, Ventil-Ate (9885-5739) can do the testing.

    My doc takes history and a longish questionnaire or two or more? beforehand. He doesn't bulk bill. But he does take a lot of time early on so as far as I'm concerned the at first, seemingly high cost is reasonable.

    I jumped at the chance to see Prof De Meirleir and get further testing done. Some of my blood has taken a little trip to Europe. I'd been wondering how to get to Belgium without the travel killing me...

    One thing about the fructose malabsorption problem is you can test it in a fashion by doing the diet it requires. See if you feel better. It's not conclusive but might be an indicator. Add green and yellow beans to this list:
    http://www.ledanutrition.com/pdf/Fructose_Malabsorption_Summary_Fact_Sheet.pdf
     
  14. caledonia

    caledonia

    Messages:
    2,980
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    1,579
    Cincinnati, OH, USA
    Basically trial and error. I always start anything new at smaller than the recommended dose. Usually something like 1/8 of the full dose. In the case of Folapro, Rich was recommending 1/4 of a pill as a full dose, and I had heard other's cautions about taking too much.

    So to start with, I cut it into pieces as small as it would go, which was 1/32. Those gave me a stronger reaction than I cared for, so then I proceeded with crushing the pill into powder and subdividing it even further.

    So my usual method for subdividing is to keep going in half. So it would go like this:

    1/2
    1/4
    1/8
    1/16
    1/32
    1/64
    1/128
    1/256 (I said 1/264, I meant 1/256).

    So you could keep testing the dose at each level, or to make things go faster you could make a guess about how far to go down and then test it. After the 1/32, I tested it at 1/128 and still found it too strong, so then I retested at 1/256 and that one worked. Good thing, because I don't think I could get it any smaller - the powder is almost invisible in the gel capsule - it sticks to the sides due to static electricity.
     
  15. caledonia

    caledonia

    Messages:
    2,980
    Likes:
    1,579
    Cincinnati, OH, USA
    Basically trial and error. I always start anything new at smaller than the recommended dose. Usually something like 1/8 of the full dose. In the case of Folapro, Rich was recommending 1/4 of a pill as a full dose, and I had heard other's cautions about taking too much.

    So to start with, I cut it into pieces as small as it would go, which was 1/32. Those gave me a stronger reaction than I cared for, so then I proceeded with crushing the pill into powder and subdividing it even further.

    So my usual method for subdividing is to keep going in half. So it would go like this:

    1/2
    1/4
    1/8
    1/16
    1/32
    1/64
    1/128
    1/256 (I said 1/264, I meant 1/256).

    So you could keep testing the dose at each level, or to make things go faster you could make a guess about how far to go down and then test it. After the 1/32, I tested it at 1/128 and still found it too strong, so then I retested at 1/256 and that one worked. Good thing, because I don't think I could get it any smaller - the powder is almost invisible in the gel capsule - it sticks to the sides due to static electricity.
     
  16. Folinic acid

    Hi Caledonia

    Thanks a lot for your reply. That was very helpful. I'll wait till I've recovered and then try again.

    Have you tried liposomal glutathione?

    Jane
     
  17. Folinic acid

    Hi Caledonia

    Thanks a lot for your reply. That was very helpful. I'll wait till I've recovered and then try again.

    Have you tried liposomal glutathione?

    Jane
     
  18. Jody

    Jody Senior Member

    Messages:
    4,067
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    546
    Canada
    Don't know about in the States, but if GP for you stands for General Practitioner, then we in Canada say it right, too. :)
     
  19. Jody

    Jody Senior Member

    Messages:
    4,067
    Likes:
    546
    Canada
    Don't know about in the States, but if GP for you stands for General Practitioner, then we in Canada say it right, too. :)
     
  20. Beady

    Beady

    Messages:
    11
    Likes:
    0
    Europe
    Does anybody know any other reasons for taking Rivotril than sleep and neurological attacks? I thought these two things were the reason why dr. De Meirleir put Rivotril on my treatment plan...

    I am hesitating quite a bit on possibly habitual drugs and drugs with heavy side effects, so I awaited the Rivotril a bit. Thanks to the other things on my treatment plan, I am now sleeping perfectly, the attacks are gone, and neurological symptoms in general is gradually getting better. But Dr. De Meirleir says this is crucial for me to start this drug
     

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