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The 3 times my ME/CFS almost completely vanished...

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Sep 15, 2013.

  1. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    To go even farther off on a tangent -
    When I was a child my parents took in a starved and dehydrated mare with an hours old foal. The mare did not have any udder development and we were concerned she was not producing milk. Once fed and watered, she did produce milk. The foal nursed and thrived, but the mare never developed udders. The foal was consuming the milk about as fast as she was producing it. The foal’s growth and development were quite normal, so she was producing adequate milk.
    justy likes this.
  2. anne_likes_red

    anne_likes_red Senior Member

    Even further off the original topic (sorry!), but justy's post reminded me of something I listened to yesterday - a recent talk at AHS13 by Kevin Boyd, a pediatric dentist from Chicago who has a special interest in evolutionary medicine.

    His presentation is titled "Sleep Apnea, Attention Deficit Disorder and Small Jaws: Not Likely Things of the Past."
    He explains how he believes optimal jaw development, which helps allow the proper oxygenation of the brain during sleep, really depends on extended breastfeeding...something like 3 or 4 years! (Society's not set up well for that way of living either.)
    The link is not to the full presentation, just the audio - a bootleg version.
    SickOfSickness likes this.
  3. justy

    justy Donate Advocate Demonstrate

    Anne - thanks for the video link, will have a look later. Breastfeeding is indeed considered extremely important for proper developemnt of the jaw and teeth, as breastfeeding is an active process, whereas being fed by bottle is passive - the baby does not have to work to get the milk out of the teet, with minimal pressure it just flows.

    So far off topic now!
  4. cigana

    cigana Senior Member

    Hi Antares, thanks for posting this. Yes, you can count me as a person who has had very similar experiences to you.

    I'm surprised no one has mentioned this, as it's fairly well known with MECFS and called either the Location Effect or Mold Avoidance. The theory is that something in the environment (most likely mold) is causing inflammation.

    I have also miraculously felt better while being abroad, most notably Japan.

    The reason why you probably don't feel better in all locations is that it is only in a small number of locations where the mold is not present.

    Many people with MECFS have recovered for example by spending large times in the desert and then moving to a mold-free environment. See the posts in the biotoxin section.

    I think that for some reason, the thing that is causing your MECFS (let's say a retrovirus or Lyme bacteria purely for arguments sake) is also causing you to be highly sensitive to the mold, to such an extent that actually the majority of your symptoms are due to the mold (rather than the underlying cause, which in and of itself produces less overt symptoms).
    Antares in NYC likes this.
  5. gregh286

    gregh286 Senior Member

    Londonderry, Northern Ireland.
    @Antares in NYC
    I have noticed this trend whereby a disruption to my circadian rhythm has hugely positive CFS effects. Over Christmas I had 2 overnight Dubai flights where i felt "tired" or jetlagged the next day but not the whole CFS feeling of doom with a few hours airline sleep both ways.
    I also have the issue of waking up feeling "dead" or worse with greater amount of sleep, legs really heavy, all that stuff.
    I have broke my sleep pattern into 3-4 hour blocks as a trial and huge improvement, but not really sustainable to most people to work like that,
    Something is going wrong at the metabolic level at night/sleep cycle. Not mold in my case, 3 weeks in brutal mexican and dubai heat didnt fix it, no its in the human body clock.

    The only sliver of medical biomarker i have after a huge number of tests to work on is very high saliva cortisol readings, lending me to the idea of a totally overworked adrenal and thyroid during sleep cycle.
    I have started phosphatidylserine this week in an attempt to calm it. As a person I am not mentally stressed, but obviously my body is physically stressed to something or other.
    By disrupting my circadian rhythm I am confusing my body cortisol production, with positive energy outcome.

    Keep you posted,:)
    Last edited: Jan 12, 2015
    ukxmrv, Antares in NYC and cigana like this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    I've felt well once or twice in 21 years of illness. On one occasion it lasted a few hours, and was after several years.
    Mel9 likes this.
  7. knackers323

    knackers323 Senior Member

    Any idea what caused these effects?
  8. Sandman00747

    Sandman00747 Senior Member

    United States, Kansas
    I, just like MeSci have had a few short remissions in 21 years of suffering. Last spring I had a 3 1/2 day remission back to perfect health! It was so incredibly nice to feel the old me again. Joints and head stopped hurting, energy soared, and I even started recalling memories long since forgotten. Brain fog was totally lifted.

    I mean this thing completely left me or so I thought. After 3 1/2 days I awoke and it was back again. As cigana said assume it's something quite nasty like Lyme or a retrovirus. How in the world can a body feel so bad for so many years and then suddenly have the ability to completely suppress this demon for a few days? And I did not even change locations, nor did I change anything about my lifestyle during those days!

    I am at a complete loss except to tell everyone I felt so good during those days of remission that I sincerely believe we can be fixed with little or no permanent damage even after 20 years. The big unknown is how do we do it? I simply have no idea how or why this miracle remission occurred! Just more questions with no answers!
    Mel9, MeSci, merylg and 2 others like this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    I can't remember I'm afraid.

    But a quick look in my blog found the following:

    "As my symptoms have improved, I have noticed that not only does PEM become much milder - at one point almost indetectable - the delay before symptoms appear increases. So when I have been at my best, the PEM was hard to detect, and seemed to be coming about a week after exertion. For most of my illness the delay has been a regular 2 days.

    What could this mean? Presumably as my gut is behaving better, fewer pathogenic bacteria and/or their endotoxins are entering my bloodstream thanks to reduced gut wall permeability. Perhaps my immune system is also less active. Perhaps it was previously attacking 'good' gut flora as well as the baddies, exacerbating the gut dysbiosis?

    But nothing in biology is simple...

    There also seems to be variation according to the season. However well I have paced and eaten, PEM delays start shortening with the days, with symptoms getting slightly worse. As the days are lengthening again, my PEM delay seems to be up to 3 days, and it is getting milder again.

    I don't think that this is due to Vitamin D levels, as I use a UVB lamp during the darker times of year.

    Scientists are coming to the view that the benefits of sunshine go beyond Vitamin D.

    So my prescription is: go and live in the opposite hemisphere when the days are too short in yours! :lol:

    (and don't forget the pacing and leaky-gut diet)"

    Unfortunately this didn't last.

    I've been feeling pretty lousy since March now, and almost praying for some level of recovery.
    Sandman00747 likes this.
  10. knackers323

    knackers323 Senior Member

    what the hell is this illness. is there any other illness that behaves like this? things help and then stop working etc? it doesn't follow any known and as yet understood logic.

    any wonder people think we are crazy or making it up. to me it seems like the nervous system is being attacked/altered in some way. I hate this thing
    MeSci likes this.

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