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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. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Profile:
    51yo male diagnosed with ME/CFS in 2001. Unable to work since.

    fructose malabsorption (low fructose diet required)
    gut dysbiosis with high levels of prevotella and streptococcus, low in bifidobacterium
    high cortisol and high cortisol to dhea ratio (100mg DHEA)
    potassium/sodium ion channelopathy (Lamictal)
    high level of sleep disturbance (Rivotril & Stilnox)
    continuous low level headache (migraine like prior to taking Lamictal)
    cognitive difficulties (injecting hydroxy B12 is excellent)
    mild orthostatic intolerance (much worse years ago)
    positive for EBV and CPN (titers unknown)
    lowered oxygen saturation
    low energy levels…

    I’m able enough to look after myself, do the shopping twice per week, comfortably walk 15-20 minutes per day. I read (including use of the computer) about 2-4 hrs per day, with breaks. I consider myself to be 30% functional, a little more on the odd better day, less on others.
    I sleep 10.5 - 12 hours overnight, sometimes more.

    While up and down, I’m fairly stable so long as stress is minimal.
    Physically demanding tasks are beyond me. A small amount of light gardening occasionally or short duration house cleaning is pretty much my limit.

    I currently take 100 mg DHEA per day, Lamictal (anti-seizure drug), magnesium glycinate tabs, potassium chloride, digestive enzyme tabs and betaine HCL with meals, bifido probiotic, injectable hydroxocobalamin B12 each day, folic acid, vitamin E, C, CoQ10, a multivitamin, zinc, alpha lipoic acid and acetyl l carnitine.

    For sleep I take Rivotril 500mcg (klonopin) and Stilnox 5mg (Ambien)

    My diet is necessarily low in fructose which means no wheat, onions, green beans, honey, apples or pears etc.
  2. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    The appointment...

    I was fortunate to have an appointment with my doctor and Prof Kenny De Meirleir last week.
    I’ve been interested in KDM’s approach for a few years now and for me, this opportunity was golden.
    KDM takes a very thorough history prior to the consultation via several questionnaires, blood, stool and exercise testing for those who can mange it.

    The consultation was thorough. He asked questions about symptoms, possible mould or legionella’s exposure, workplaces, gut issues, amalgam fillings, hair loss, illness onset and more.
    One question I asked was if he saw patients with my profile improving. His answer was “Yes, quite a bit!” so that’s encouraging.
    Further specialised blood testing will be done at Redlabs in Belgium and the results available in October. Once we know those results and a treatment path is worked out, he reckons it takes around six months to begin seeing benefits.

    I’m highly impressed with my doc and the prof for making this possible. It’s exciting to be on the verge of what I think is a very strong possibility for improvement.

    The next few appointments with my doc will be very interesting!

    I hope that by posting this that other people may do the same so we can track progress over time.
    It would be great to see patients (especially of the big names like Peterson, Klimas. Cheney etc) post a profile as this would be one way of helping people compare against their own illness. Hopefully it will provide some clues as to what may be worth pursuing.

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

    Jody Senior Member

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    Tony,

    I'm glad you had the chance to have this appointment. I hope this thing pans out and you move up to some better health and energy.
  4. Jody

    Jody Senior Member

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    Tony,

    I'm glad you had the chance to have this appointment. I hope this thing pans out and you move up to some better health and energy.
  5. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Thanks Jody,

    I've already added betaine HCL from this appt. It's meant to break down protein so I can then absorb it better. With a little luck I'll regain some weight...:)
  6. Jody

    Jody Senior Member

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    Tony,

    How much would you like to put back on?
  7. Jody

    Jody Senior Member

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    Tony,

    How much would you like to put back on?
  8. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    I'd be happy with 4-7 kg's. Not easy if you don't absorb in the first place...
  9. Jody

    Jody Senior Member

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    Did you lose weight after becoming ill, or has it always been a problem keeping weight on?
  10. Jody

    Jody Senior Member

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    Did you lose weight after becoming ill, or has it always been a problem keeping weight on?
  11. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    It was only after being ill for 5 years that I began to lose some weight. I'd always been very stable before.

    I'd like some cushioning back! lol
  12. Jody

    Jody Senior Member

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    Well I hope you find the way to pack it on then, Tony. :D

    I know you have the fructose thing going on, can't recall how you are with protein and fats. Can you handle eating much of them?
  13. Jody

    Jody Senior Member

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    Well I hope you find the way to pack it on then, Tony. :D

    I know you have the fructose thing going on, can't recall how you are with protein and fats. Can you handle eating much of them?
  14. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Please keep it coming with Dr. DeMeirlier experience. As you say it's so rare we get a glimpse of what seeing these doctors is like. Fascinating stuff. Hope it works out.

    You're on the low fructose diet. You have the bacterial overgrowth - What about anti-biotics, acidophilus??? Not on the treatment plan yet? Still waiting for other test results?

    We should have a place on the website with functional assessment, energy index and other forms plus a way to monitor progress, symptoms, treatments, etc. (Something else to work on).

    I'm going to interview Michael Maes by the way. Do you have any idea how their treatments differ?
  15. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Please keep it coming with Dr. DeMeirlier experience. As you say it's so rare we get a glimpse of what seeing these doctors is like. Fascinating stuff. Hope it works out.

    You're on the low fructose diet. You have the bacterial overgrowth - What about anti-biotics, acidophilus??? Not on the treatment plan yet? Still waiting for other test results?

    We should have a place on the website with functional assessment, energy index and other forms plus a way to monitor progress, symptoms, treatments, etc. (Something else to work on).

    I'm going to interview Michael Maes by the way. Do you have any idea how their treatments differ?
  16. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Food...yum...:)

    Thanks Jody,

    I can eat whatever I like...:) but I feel much better on the low fructose diet.
    Wheat makes me ill if I eat much of it.

    Dairy isn't good for me either (nausea) but I can handle goats cheese (different proteins). The betaine HCL is meant to help break down the protein so I can gain some weight and hopefully get some strength. I'm hoping! I've noticed a difference already re stools so hopefully that will translate to weight gain.

    I eat little processed food, cook most of my own stuff, even make my own form of simple gluten free bread and eat a lot of protein. Fats are fine but they just haven't "stuck to my ribs" for quite a while.

    Hi Cort,

    I take Bifidobacterium lactis probiotic (Metagenics, Ultra Bifidus) as it's the one I'm low in. Interestingly it's one that Dr Logan mentioned in your interview.
    After taking VSL#3 my lactobacillus got too high...it helped the nausea, grumbling gut etc. But the bifido seems to be hitting the spot now pretty well.

    I'm expecting antibiotics after the blood results from Redlabs come back in October and we know what and how to attack all this.

    I wish I knew more about Dr Maes and his treatment approach. I suspect it would be a bit similar as I read one study where he pursued and resolved leaky gut in one ME/CFS patient with diet, zinc, glutamine? and n-acetyl cysteine (think I got that at least partly right!).
    I mentioned zinc to Prof De Meirleir and he said I needed more than the supplement I was taking of 20-30mg per day.

    My thoughts exactly re the functional assessment. I'll keep posting as things change and with any luck I'll be back ruining a perfectly manicured golf course next year...:)
  17. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Interesting stuff. I'd like to be able to handle some dairy; I'll give the goat cheese a try. Check out the bifidobacterium post (http://forums.phoenix-cfs.org/showthread.php?t=253)- it worked really well healing the gut permeability of those laboratory rats.

    You're right on the nail with Dr. Maes - that memory is still working pretty good!

    Many happy divots!
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Interesting stuff. I'd like to be able to handle some dairy; I'll give the goat cheese a try. Check out the bifidobacterium post (http://forums.phoenix-cfs.org/showthread.php?t=253)- it worked really well healing the gut permeability of those laboratory rats.

    You're right on the nail with Dr. Maes - that memory is still working pretty good!

    Many happy divots!
  19. Kenny de Meirleir experience

    I have also recently seen Kenny. I have the same doctor as Tony and Kenny spent a week in Melbourne seeing some of his patients.

    I'll follow Tony's lead and post some test results:

    I have fructose and lactose intolerance.
    I have recently treated gut dysbiosis and now bacteria levels are normal. I was negative on the hydrogen sulfide test.
    I have high antibody titres for HHV-6 and EBV as well as mycoplasma.
    I also have channelopathy and orthostatic intolerance.
    I have high cortisol.
    High phase 1 liver detoxification functioning.
    I have a weak positive immune system reaction to mercury and nickel.

    My treatment now is lamictal for channelopathy, florinef and hydralazine for orthostatic intolerance, propranalol for heart palpitations, vit B12 injections, magnesium injections, nexavir, and valtrex. I also take zinc, vit B complex, vit E and hawthorn supplements.

    Kenny recommended a couple of supplements for methylation block - folinic acid and liposomal glutathione. I tried taking these 3 days ago and had a negative reaction. I only took them on one occasion and now waiting to recover. I'd love to hear from anyone who has tried these 2 supplements.

    He also recommended chelation for mercury and nickel. I'd be very interested to hear others' experiences with this too.

    Jane
  20. Kenny de Meirleir experience

    I have also recently seen Kenny. I have the same doctor as Tony and Kenny spent a week in Melbourne seeing some of his patients.

    I'll follow Tony's lead and post some test results:

    I have fructose and lactose intolerance.
    I have recently treated gut dysbiosis and now bacteria levels are normal. I was negative on the hydrogen sulfide test.
    I have high antibody titres for HHV-6 and EBV as well as mycoplasma.
    I also have channelopathy and orthostatic intolerance.
    I have high cortisol.
    High phase 1 liver detoxification functioning.
    I have a weak positive immune system reaction to mercury and nickel.

    My treatment now is lamictal for channelopathy, florinef and hydralazine for orthostatic intolerance, propranalol for heart palpitations, vit B12 injections, magnesium injections, nexavir, and valtrex. I also take zinc, vit B complex, vit E and hawthorn supplements.

    Kenny recommended a couple of supplements for methylation block - folinic acid and liposomal glutathione. I tried taking these 3 days ago and had a negative reaction. I only took them on one occasion and now waiting to recover. I'd love to hear from anyone who has tried these 2 supplements.

    He also recommended chelation for mercury and nickel. I'd be very interested to hear others' experiences with this too.

    Jane

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