Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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what has worked for you

Discussion in 'General Treatment' started by cman89, Oct 18, 2014.

  1. cman89

    cman89 Senior Member

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    Hayden, Idaho
    Hello folks, I am new to the forums here, and I am presenting on behalf of myself and my mother. I have had faitigue problems in the past, but no ME diagnosis. my mother, oth, has been diagnosed with Fibro/CFS, with muscle soreness, PEM, brain fog, and lack of energy her main symptoms. There is a ton of info on this site, and I am sure my question here has been asked, but I will still ask it. And please, no tangents or essay like answers, just relevant info. Here we go: What dietary/supplemental/drug/behavior interventions have actually worked for you in improving symptoms, and what is your current level of functioning/ improvement?
     
    merylg and rosie26 like this.
  2. rosie26

    rosie26 Senior Member

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    Hi Cman89, welcome to PR.

    D Ribose has been helpful for me. It has given me a bit more energy and eased some nausea. Also lessens some pain in my hands. I only discovered it about 2 years ago.

    Melatonin has helped me to get off to sleep, quite reliably in a hour, but only when I am not having a severe relapse.

    Fish Oils seem to help ease some head symptoms, lessening inflammation a bit.
    I am at a moderate level of ME.
     
    Last edited: Oct 18, 2014
    Valentijn likes this.
  3. redrachel76

    redrachel76 Senior Member

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    Zostrix cream for muscle pain helps me the most.

    High dose vitamin C for IBS-C and general CFS symptoms.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    Antivirals and immune modulators have made the most difference for me. I'd be completely housebound and probably bed bound without them. However I am still at about 15-20% of normal at best. I can function in my home. I go out only when I have a doc appointment. But I have been sick for 20 years and length of illness and speed of intervention important.

    I cannot get rid of my brain fog.

    Please put more paragraphs breaks in your posts. I couldn't even read your other thread. :)
     
  5. cman89

    cman89 Senior Member

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    I apologize about the last post. I will try to break it down. While I have had trouble reading in the past, I do not now, and so I forget to accomodate for others. My bad
     
  6. cman89

    cman89 Senior Member

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    Rosie- is exercise a possibility at your "moderate" level? Just trying to gauge, not criticize
     
  7. JalapenoLuv

    JalapenoLuv

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    unknown
    Does your mom have a cat?
     
  8. JalapenoLuv

    JalapenoLuv

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    muscle soreness-hot baths
    PEM-not a problem.
    brain fog-nothing i can think of.
    lack of energy-pacing, very light aerobic exercise.

    What is your current level of functioning/ improvement? I'm at 50%.
     
  9. cman89

    cman89 Senior Member

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    nope no known allergies for her
     
  10. cman89

    cman89 Senior Member

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    Well, I have had two major reductions in my "functioning", which I consider to be physical and mental acuity, separate. In 2009 I was hospitalized for extreme weight loss following five months of gut problems, insomnia, and not enough calories. Coming out of that I was mentally ok, but I lost some muscular endurance.(used to be quite athletic) so, that knocked me to 85-90 percent of former function. This year's "expereinces" have left me closer to 60-75% physically and 80-90% mentally. I can exert myself, but I have funny heart/circulatory stuff going on , and my endurance/energy is certainly down. Some days that 60 % drops to even as low as 40, and others, it is much better. Never debilitated though,for which I am thankful.
     
  11. rosie26

    rosie26 Senior Member

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    .
    :) That's ok.
    I do more than I should most of the time - I relapse a lot and quite heavily too.
     
    Last edited: Oct 19, 2014
  12. xrunner

    xrunner Senior Member

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    Surrey
    More or less in chronological order:
    1- Treatment for Borrelia and Bartonella (Lyme), mainly antibiotics
    2- Simplified methylation protocol (Rich's protocol)
    3- GcMaf probiotic, now called Bravo
    4- 1st Line (broad antiviral, antibacterial, antiparasitic)

    I was housebound for three years and went from a 10 on the Bell's scale to currently 50.
    Treatments 1,3, and 4 were the ones that had the greatest effect on my recovery.
     
    Rlman likes this.
  13. Rlman

    Rlman Senior Member

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    Toronto, Canada
    Hi xrunner, what is 1st Line?
     
  14. helen1

    helen1 Senior Member

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    These have helped me:
    1. Gut treatments: change in diet (gluten and dairy free paleo type), nystantin and s.boulardii
    2. Methylation (Freddd type)
    3. Coffee enemas
    4. Cold water therapy (swimming gently 30 mins in ocean or pool)

    Able to work part time and do light exercise.
     
  15. tandrsc

    tandrsc

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    I have gone from only managing to get dressed once a week to working 2.5 days a week (easy office stuff) with the following combination in chronological order:

    This list of herbals:
    http://www.cortjohnson.org/blog/201...oach-to-chronic-fatigue-syndrome-that-worked/

    This form of very strict pacing:
    http://forum.chronicfatiguesyndrome.me.uk/index.php/topic,16211.0.html

    Oxygen Therapy. My local MS Therapy Centre offers it free of charge to ME people and I go twice a week. Here's a wee video to explain what it is.
    http://www.mstc-lothian.org.uk/oxygentherapy.php

    The only exercise I do is walking to and from work (30 mins each way) and I still struggle with reading (your first post gave me trouble too :))
     
    Valentijn likes this.
  16. xrunner

    xrunner Senior Member

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    @Rlman, it's an antimicrobial which is naturally made by the body, you can look it up under the name lactoperoxidase / thiocyanate.
     
  17. maddietod

    maddietod Senior Member

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    East Coast, USA
    Every time I straighten out my diet I feel better, and every time I go back on carbs I feel worse. I eat dairy-free Primal.

    I've been sick for almost 30 years, and haven't had any luck with supplements or medications. I either don't react at all, or I react badly.
     
    xchocoholic likes this.
  18. JAM

    JAM Jill

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    If she has a herpes infection olive leaf extract may work. It takes at least 6 months to be effective from what I have read and in my experience. Most people seem to stop taking it as soon as it makes them more sick, which is part of the healing process. It took 6 full months of cycling through all my symptoms, and then one day I woke up feeling good. I plan on taking a maintenance dose for the rest of my life to prevent recurrence.
     
    Last edited: Oct 21, 2014
    jepps and Rlman like this.
  19. cman89

    cman89 Senior Member

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    Hayden, Idaho
    Once again, sorry about the posts, I read with little difficulty, so...If you dont ,mind me asking, how much do your walks tend to tire you out overall? Or have you built up some endurance?
     
  20. cman89

    cman89 Senior Member

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    What symptoms seem to be best aided by the Cold H2O Therapy?
     

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