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Pondering what STARTED my Fatigue problem...what about you??

Discussion in 'General ME/CFS Discussion' started by grapes, Jun 24, 2017.

  1. grapes

    grapes Senior Member

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    I was thinking recently as to what in the world started my current fatigue issue.

    For one, I had a massive mold inhalation a few years ago and was very sick. I'll call that Year one--Mold. I started to recover that Fall, slowly

    Year Two--good energy, but problems creeping up by the Fall. i.e. though the mold problem of the previous year seemed totally gone, I was under a lot of stress during that very active year and was dealing with it wrong. So I was seeing problems here or there cropping up by the Fall, even with good energy....

    Year Three--good energy but growing problems, heavy metal detox, OAT testing. I still had good energy, but by the fourth month of this year, after doing blood and hair testing, found myself with high heavy metals, and especially high copper. Bingo. I started a detox, and by the third week, massive debilitating fatigue hit and this is where I realized something was very wrong. So I look back at this and wonder: did the mold back in Year One start damaging my mito, or was it the rising copper that had started in Year Two and was now even higher in Year Three?? I also did an OAT (Organic Acids Test) and saw many mito problems which I started to treat. Year three ended up with SIBO after the miserable detox, then candida from over-treatment of the SIBO, which took me five months to fully get rid of (into Year Four).

    Year Four--another copper detox, easy crashing, a second OAT confirming my mito were a mess This was the first time my energy levels were clearly kaput from the beginning. It took me into late Spring to fully get rid of the candida from late Year Three...but then I went into another copper detox from taking high doses of phospholipids (had read it heals mito--didn't expect it to cause a detox). Absolute fatigue misery all over again. And again, another OAT confirmed that my mito were in trouble, plus I need higher CoQ10. And it was the fall of this year I found out via testing that maybe the mold has never been fully gone, as I'm part of 24% of the population which has genes which cause me to need extra help, plus I found out I had brain inflammation! Mold!! Started treatment to remove the mold by December. Also saw methylation problems starting at the end of this year--rising B12, rising iron.

    Year Five (this year)--low energy levels, easy crashing So here I am today:

    1) I'm now working to improve my methylation with higher doses of folate (and it's working) and sometimes need extra potassium due to the increased methylation improvement.

    2) I continue treating what two OATS from previous years have revealed with targeted supplements. I still go back to my OAT results and discover something new!

    3) I've raised some of my supplements to treat borderline low results on the Spectracell test, like B5, B6, Folate, Biotin, Manganese, and Chromium,

    4) Awaiting the results of the Amino Acids test and will treat accordingly.

    5) Removing mold with cholestyramine, albeit can't take it four times a day due to other things I have to take​

    Bottom line: I don't know if the MOLD from Year One was the impetus, or the HIGH COPPER which was going up at the end of Year Two, and especially in years Three and Four, or both. But they seem to have played a big role. I do see others make guesses as to what started their CFS or ME: flu, EBV, other viruses, cancer treatment, stress, antibiotics, diseases, to name a few. I also see that certain stressors can make worse what was already there, such as with genetics....I think this may be the case for me, as I never had top-notch energy like some do---I was just average before all this hit.

    So all I can do is be hopeful that all the things I'm treating just might turn me around....in time. We'll see.
     
  2. grapes

    grapes Senior Member

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    I also want to say this: More than 25 years ago, long before any of the above, I had reactivated EBV. No, it did not cause all this. But I remember how TIRED I was. Very tired. And looking back at that, I realize how anything which demands energy to exist, or energy to be fought against by the body and immune system...fatigues me. That explains my poor energy levels. Something is going on which either takes energy away me, or has damaged what gives me energy. I hope to figure it all out.
     
  3. Marigold7

    Marigold7 Senior Member

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    "Ah yes, I remember it well.." It was early 1969 and I was teaching full time. Around the time of the mock "O"level exams.. which made me very popular. NOT !
    Caught flu, REAL flu and was so ill they sent me home. I remember ghosting through M and S convinced I was going to die and that I had to have a new nightdress to die in...
    A week later.. OH MY !
    A knock at my bedsitter door and the son of the most aggressive teacher in the school, arms piled high with exam papers for me to mark... I MEAN REALLY ! No " I hope you are feeling better; anything you need? "
    So when I went back to the dr as my sick note was up, and he asked was I eating etc I admitted I was still feeling really ill which was true and he decided to award me a second week off.
    Which I spent abed, marking exam papers.

    And that marked the start of it all for me. Infection after infection and I finally collapsed at school.
    Howver hard i tried to get back to it all?

    Sitting here all these years later with tears flowing at the way I was treated. After 3 weeks of basic tests and nothing showing, they shunted me to the mental health system and there i resided for decades

    It was only in the late 9os when finally truth was glimpsed than any dr actually took a history and of course said that that was a classic trigger. And wrote under my UK medical notes. "Was never mentally ill; it was always M.E."

    And i left the UK for ever.

    If I seem too.. positive.. to be really ill with M.E it is because of the desert dark years I suffered and endured. Often now I am like Rip Van Winkle, waking up after years asleep. So many friends dead and gone and the world a different place,.I treasure all I have, all I am and all I can do for others. All is so precious now however ill I am . Life is a gift that has been given back to me.
     
    TiredSam likes this.
  4. eric_gladiator

    eric_gladiator

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    I feel really stupid because mine I think is caused by having felt so much stress. I feel stupid because I could have avoided it if I had calmed that
     
    Kina likes this.
  5. Marigold7

    Marigold7 Senior Member

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    Kicking yourself will not help matters and does stress really cause M.E? Be at peace
     
  6. eric_gladiator

    eric_gladiator

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    @Marigold7


    Is it strange that stress causes this? Or could it be some drug? I was a drug user
     
  7. bombsh3ll

    bombsh3ll

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    There is unlikely to be one single cause in each of us, and you can't look back thinking if only I'd done x or y differently... Whatever drugs you took, plenty of others will have taken and been absolutely fine. Whatever stress you were under, others will have been under worse stress and remained healthy.

    In my case I did three incredibly stressful rounds of IVF with potent hormonal drugs injected and taken by other routes then had my daughter, whose birth was complicated by a massive postpartum haemorrhage landing me in ITU with 20 units of blood transfused. I seemed to bounce back initially after that but collapsed 14 months later after trying to blow up what I thought was a balloon but was actually a water bomb.

    Although it blew extremely hard and it felt like something "went" in my brain at that time, I cannot accept how something as innocent as blowing up a balloon could result in such a devastating chronic illness and alter my physiology so dramatically. It is likely it was simply a trigger, final straw or unmasking of something that was already in progress.

    I think more likely for me things were set in motion by the massive obstetric blood loss or something picked up from the transfusion. Without the transfusion I would have been dead straight away, and although I am very ill I would never go back and not have my daughter had I the choice again. Who knows what any of us could have done differently, if anything?

    All we can do is try to live the best lives we can today, without regret or self-blame.
     
  8. Learner1

    Learner1 Professional Patient

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    Pacific Northwest
    I hate to ask, given all you're going through, but might EBV still be lurking and complicating things? Or some other infection?

    Don't kick yourself for the past...we can only move forward. Its just very frustratig that this onion has so many layers to get through.
     
  9. BFitz89

    BFitz89

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    Charlotte, NC
    I think stress, whether it be physical, mental or emotional, plays a huge role in this illness. I came down with mono after a bad breakup where I was the lowest I'd been mentally in a long time. My bout with mono wasn't all that severe and I got over it rather quickly. I went back to not sleeping much and drinking like a sailor towards the end of the second week and continued that way until CFS started a couple months later. I know the stress from the breakup (emotional) and the impact mono, drinking and hardly sleeping (physical) combined was too much for my body to handle and it broke on me.
     
    eric_gladiator likes this.
  10. eric_gladiator

    eric_gladiator

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    @BFitz89
    Do you remember anything that could have been shot, some drug or toxic?
     

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