Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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After 31 years of CFS/ME...diagnosed with NAFLD

Discussion in 'General ME/CFS Discussion' started by Zensational, Jun 27, 2015.

  1. Zensational

    Zensational Senior Member

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    Orlando, Florida
    Hi Everyone, :)
    I was just diagnosed with severe Non-Alcoholic Fatty Liver Disease last month. My doctor found it as a result of an abdominal ultrasound. I was shocked to learn that I am 14 times more likely to have a heart attack with this disease. She said that my cholesterol was high (237) but normally the cholesterol level with NAFLD is much higher with the disease as severe as mine. She referred me to a liver specialist and my appointment is next week. I am wondering what to expect. I believe the cause of my disease to be a 30 year bout with CFS which is Epstein Barr Virus. The virus can attack the liver functioning and apparently that is what has happened.
    There is a lot we can do nutritionally to help ourselves as well as exercise and weight loss. The weight loss is slow going with me because of the fatigue but I've lost several pounds in 2 weeks. The liver is responsible for metabolism so when it is not functioning well it seems that everything slows down.
    In the meantime, I am taking a very proactive approach. Here is what I am doing.
    Paleo Diet- off all sugar, grains, high carbs
    Lots of purified water and lemon first thing in AM and throughout the day.
    Vitamin E 800mg daily
    Phosphydtyal Choline 900mg
    daily (there is a strong correlation to fatty liver and choline deficiency) I am using Life Extension Hepatopro 900 Mg Capsules
    N-Acetyl Cysteine 1000mg
    Milk Thistle 4:1 Extract 1000 mg (Silymarin)
    6 CAPS – OLIVE LEAF POWDER (for virus)
    4 CAPS – MUSHROOM COMPLEX
    2 CAPS – CORDYCEPS
    1 CAP – SELENIUM
    5 DROPS LOMATIUM W. 2 GRAMS VIT C..this herb is very powerful antiviral, antibacterial and am taking to combat the EBV
    DIGESTIVE BITTER WITH MEALS help decongest the liver.
    PEPPERMINT OIL WITH MEALS helps with digestion and IBS
    Lacto-fermented Vegetables
    EVENING
    CITRACEL WITH 1 TBS POTATO STARCH
    AND- please read about resistant starch before you dismiss it. It is crucial in feeding the good gut bacteria. I am using Bob's Red Mill Unmodified Potato Starch. It has to be the raw potato starch. Also plantain starch will work as well.[/I]
    1-2 TBLS APPLE CIDER VINEGAR
    1 CAP - PRIMAL FORCE PROBIOTIC
    Alot of people have had success with the Y-Dan exercises.
    My husband has an embedded kidney stone so we are starting to drink chanca piedra tea for kidney stones as it helps clear both the kidneys and the liver.
    If you are eating the SAD, standard American diet and drinking anything with high fructose corn syrup, like we all have, then please get informed about the hazards of this.
    This is a somewhat silent disease and the food industry is not on our side. Personal opinion there.
    I sincerely hope this helps someone. If you have anything else you have found that is helping please let me know. I am 69 years old and do not take any medications. My doctors are surprised but I deal health issues naturopatically.
    Being diagnosed was actually a good wake-up call for me because I intuitively knew that I had GI problems, just didn't know what they were.
     
    Last edited: Jun 27, 2015
  2. adreno

    adreno PR activist

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    I would take this TID. That's the dose used in studies.
     
  3. Zensational

    Zensational Senior Member

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    Orlando, Florida
    What is TID? Sorry to be ignorant. Is there anything else you know of please let me know.
     
  4. Zensational

    Zensational Senior Member

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    I looked it up. Yep that's what I am taking polyenylphosphatidylcholine. Thanks for making that clear.
     
  5. adreno

    adreno PR activist

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    TID = three times daily.
     
  6. adreno

    adreno PR activist

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    Last edited: Jun 27, 2015
  7. anciendaze

    anciendaze Senior Member

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    TID is a relic of the time when every doctor learned Latin: "ter in die". "three in a day"

    In English this could be confused with "two in a day", but in Latin that is "bis in die", B.I.D.
    Another possible prescription is Q.I.D. for "quater in die" or "four in a day".

    There is even a terribly confusing notation Q.D. for "quaque die" for "once a day", though that has mercifully fallen out of use.
     
    whodathunkit likes this.
  8. Zensational

    Zensational Senior Member

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    Orlando, Florida
    Phosphydtyal Choline 900mg Three a day, that's going to be expensive. Better than dying I guess.
     
  9. adreno

    adreno PR activist

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    You could try regular PC, not PPC. I'm not sure that PPC is more effective.
     
  10. Zensational

    Zensational Senior Member

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    Orlando, Florida
    You could try regular PC, not PPC. I'm not sure that PPC is more effective.
    Maybe I'll take the PPC once a day and the PC twice a day.
    Do you think I should have a needle biopsy if the doctor recommends it?
     
  11. adreno

    adreno PR activist

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    http://www.nrcresearchpress.com/doi/abs/10.1139/apnm-2012-0261

    From this I think it's safe to assume that PPC is more effective. Regular PC caps contains some PE as well, but the PC content has been boosted, so it may still work. Lecithin should probably be avoided.
     
    Last edited: Jun 27, 2015
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  12. Vasha

    Vasha Senior Member

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    Hi @Zensational - so sorry to hear that! :hug: Fatty liver showed up on one of the scans when I first got sick (I was losing weight like crazy, so the doctor was concerned about cancer) even though I've never been overweight, a big drinker, etc. I think we are more at risk for it because, as you noted, there is a strain on the liver. I suspect metabolic issues also contribute.

    I don't have much to add to your very impressive regimen, but my terrific functional medicine doctor got me drinking lemon juice in the morning, 1/2 hour to an hour before eating, as a gentle liver detox to help with the strain. You can dilute it as much as you need, and work up to the juice of a whole lemon. Some people can just drink it straight after working up.

    Vasha
     
  13. Vasha

    Vasha Senior Member

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    THANK YOU @anciendaze - this is one of those things that is quietly puzzling in the back of the mind that I have never managed to look up and figure out. It is highly satisfying to know the answer. :nerd:

    Vasha
     
  14. Ema

    Ema Senior Member

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    Midwest USA
    TUDCA is a bile acid available as a supplement that improves fatty liver (in mice!).

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2974643/

    It may also have other benefits associated with ameliorating endoplasmic reticulum stress and protein misfolding. There's a thread on this on the forum too.
     
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  15. alex3619

    alex3619 Senior Member

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    I would be careful in presuming that fatty liver disease completely explains your condition. Many patients with ME have fatty liver. Most people with fatty liver do not have our symptoms. I am not saying its wrong, just suggesting caution.
     
    Tammy, GONZ0hunter and helen1 like this.
  16. ahmo

    ahmo Senior Member

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    Not to be confused with QOD, every other day.;)
     
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  17. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    @Zensational , my notes say that manganese and zinc deficiencies cause a choline deficiency. Have your manganese and zinc been tested?

    Does someone (doctor, naturopath) know that you are taking the milk thistle. It can be bad in some situations.

    @anciendaze, or anyone else, what does PNR mean in Latin?
     
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  18. adreno

    adreno PR activist

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    I think you mean PRN. It means "as needed".
     
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  19. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Yes, I mean PRN. Sheesh, I got the right letters. Certainly you don't expect me to get them in the right order! I think maybe it is time for me to go to bed. :sleep:
     
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  20. anciendaze

    anciendaze Senior Member

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    PRN stands for "Pro Re Nata" = "as the thing is born" meaning "as needed" or "as circumstances require". This is not the same as whenever you feel like it, that would be "ad libitum".

    Misspelling and omissions are particularly dangerous in Latin, where natis means buttocks, and P.R. is the standard medical abbreviation for "per rectum".

    This brings to mind the Swedish joke about a medical orderly named "Per Anus", which sounds very much like a real Swedish name. Medical humor tends toward certain parts of the body in any language.
     

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