The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Heavy metals & detoxing pushed me into a mitochondrial CFS problem

Discussion in 'General ME/CFS Discussion' started by grapes, Sep 13, 2016.

  1. grapes

    grapes Senior Member

    Messages:
    207
    Likes:
    135
    I have not had a mito energy metabolism problem my entire adult life. That was something "others" had.

    From 2014 to 2015, I had two rising heavy metals (lead and copper) and didn't get it until testing confirmed it around April of 2015! My energy levels weren't greatly affected by those rising levels, but did have clear symptoms that something was going on.

    But...when I started to detox...whoa...that's where the major fatigue hit like a rock about 2 1/2 weeks into it. Looking back, either the rising heavy metals had been damaging my mito before I started a detox (with no obvious symptoms before then), or the detox did it very quickly, thus the horrific fatigue within a few weeks into the detox and which lasted the entire five months of the detox. I did an OAT test when I had been detoxing about two months, and there were clear mito issues revealed there. I got on the OAT recommended supplements of CoQ10, l-carnitine, B-vitamins and more. Didn't change anything, tho.

    Yet, once the detox ended, the fatigue mostly lifted...though I did have to deal with digestive issues caused by the once-high copper.

    But 2016 has been the pits. There were two MAJOR crashes after activities that I did have the energy to do...followed by a severe crash which caught me by surprise each time, taking weeks to recover from, typical of CFS..

    After the second horrible crash this year, I looked into things deeper. i.e. I also have three homozygous NDUFS7 mutations and I wondered if the high heavy metals caused those to start expressing themselves even worse. I also redid the OAT...and bingo, clear issues related to the need for even higher doses of CoQ10. So I purchased liquid ubiquinol, taking 1500-2000 mg daily, and that changed my life within a few weeks.

    But....after my life changed on the high dose liquid CoQ10, I switched to soft gels CoQ10 along with a much lower dose of the liquid CoQ10....and within a few weeks came my third major crash. I am currently back on liquid CoQ10 only in the higher amounts to see if I can regain that energy I had.

    But the bottom line here for me is that it appears the high heavy metals did all this to me. And whether the months of buildup, or the detox, did it, I'm not sure. Anyone else see high heavy metals cause/make worse their mito/CFS issues??
     
    Last edited: Sep 13, 2016
  2. cman89

    cman89 Senior Member

    Messages:
    429
    Likes:
    190
    Hayden, Idaho
    How long did you "detox" for? I know that some people feel much better when detoxing, but it can also mobilize metals that were dormant, and cause some issues with their active state if mitchondria arent being supported.
     
  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    695
    Likes:
    2,291
    I have high blood aluminium (without chelation) which is a risk factor for dementia. Some patients like to claim they have 'high metals', but make sure if people tell you this, this is a blood test taken before, they take chelation agents!

    I can't associate it to a mitochondrial problem, as I have no evidence.

    What would be more likely is an autoimmune related infection causes mitochondrial problems, and the metals are a consequence of poor detox ability due to the disease process, e.g secondary.

    Who knows?
     
  4. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,405
    Vancouver, British Columbia
    A few doctors over the years have said that it is a mistake to do a provoked challenge test when testing for metals. One doctor said that it was guaranteed that with provoked testing the metal count would be high and that most people don't have high metals or need chelation therapy.
     
    Kati and Cheesus like this.
  5. grapes

    grapes Senior Member

    Messages:
    207
    Likes:
    135
    I detoxed for over 5 months and the fatigue was excruciating. I saw others in forums mention fatigue with detox, but mine seemed quite extreme. During that time, I did the OAT test and saw a lot of energy blockages which probably explained the extreme fatigue. i.e. detoxing was apparently taxing an already taxed body. I got on the OAT recommended supps bit nothing changed.

    When I stopped detoxing, the fatigue immediately lifted perhaps 75%...but then this year, I've had two horrific crashes after plenty of energy to do the things I did which proceeded the crashes. It was like I ran out of gas!

    I will say the 1500 -2000 mg. liquid ubiquinol did wonders about 5 weeks after that 2nd horrific crash! And it even did that when phospholipids I was taking caused me to start detoxing again in June of this year! I had regained my energy while detoxing, of all things, thanks to the high dose CoQ10.

    But I crashed again this past week when moving over to soft gel CoQ10 caps. Taking CoQ10 caps was like taking sugar pills, unlike the liquid which changed my life. I got back on the full liquid starting last night, but I'm so exhausted that I doubt my recovery will be very fast.

    Anyway, I do feel like the high lead and copper did a number on me....or the detox did this. I only started having these horrid crashes since the detox...
     
  6. *GG*

    *GG* Senior Member

    Messages:
    6,139
    Likes:
    4,734
    Concord, NH
    Should be at the top of the Page on the Right. Will say "thread tools" or something like that.

    @grapes

    GG
     
  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,001
    Likes:
    5,060
    USA
    Would you mind sharing the brand of liquid ubiquinol you are taking? It looks like something I'd like to try. Thanks.
     
  8. grapes

    grapes Senior Member

    Messages:
    207
    Likes:
    135
    Hi. Google Liq-Nol. I can't underscore how much it has changed my life! Discovered last night why I need it so badly....I have three Homozygous CoQ10 mutations on top of three NF7 mutations.
     
    CFS_for_19_years likes this.
  9. Hip

    Hip Senior Member

    Messages:
    9,355
    Likes:
    14,669
    How did you know these metals were rising from 2014 to 2015 (I assume by "rising" you mean their levels were becoming more elevated in your body), if you only got tested in April 2015?

    I have not heard of high levels of copper being problematic. Would you have a weblink or reference for that?


    What heavy metal detoxification agent(s) did you use? DMSA, DMPS, alpha lipoic acid?

    According to the Andy Cutler protocol, DMSA is used first (for up to a year), to clear mercury from the body, before you add in ALA (as ALA can cross the blood-brain barrier, and thus potentially convey mercury from the body into the brain, if the body mercury is not cleared by DMSA):
     
  10. grapes

    grapes Senior Member

    Messages:
    207
    Likes:
    135
    By clear symptoms, though at the time, I didn't know those symptoms were connected. I do now. For one, many of us who get high copper also have wonky iron levels. Mine started being wonky by August of 2014 as revealed by labs. A lot of people with high heavy metals get low ferritin, but I got WEIRD iron that would simply dive down to 55 after being 105 just two weeks before. It was hard to keep it up.

    Second, around the same time, I would get these "movement headaches". I never get headaches. Those totally went away once might levels were done.

    High copper is VERY problematic. It's about the reports that others who found themselves with high iron. For me, my hair started coming out in chunks here or there in early 2016 (yet I had gotten my iron back up). Second, in March of 2016, I started having what I call fast ruminating negative thoughts. That's the copper in the brain. It was SO odd and not like me. I did find reference to both on the net, but don't have those here.

    ALA is more about mercury. This wasn't about mercury. There are some differences, but what a lot of us do with high copper (plus I had too high lead!) is get on things like molybdenum, manganese, b-vitamins, antioxidants plus strong supports for the detox organs liver and kidneys. I also used very small amounts of zinc--if I went too high, the detox issues were horrific...and my detox symptoms were EXTREME fatigue already due to my mito issues (though with that, too, I didn't realize what was going on). We also get off high copper foods. I started detoxing pretty quickly, but as stated, it lasted over 5 months.
     

See more popular forum discussions.

Share This Page