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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Poisoning the Mitochondria

Discussion in 'General ME/CFS Discussion' started by Radio, Jan 23, 2014.

  1. ahmo

    ahmo Senior Member

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    @Radio, thanks for posting this vid. I didn't really want to watch it. I'm of course, anti-GMO. But the link w/ your conversation re mitochondria suggested I ought to give it a go. Wow. V scary. I'll be linking it on the GAPS forums, with many parents of autistic kids. ahmo
    Radio likes this.
  2. nomad

    nomad Anyone interested in a London Support group?

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    I'm finding this all very interesting. I have High Functioning Autism, and have been severely incapacitated all my life with fatigue, intense muscle cramps and inflammation. And a anxiety which feels like its on skating the edge of psychosis.

    Having been experimenting with supplementation for the last few years, I'm only now starting to put together the methylation protocol, and within a week I've noticed major differences.in mental clarity. And, I'm suspecting a reduction in anxiety.

    Next step is to learn about sulfates. I can relate to the symptons of severe muscle wasting and gut dysbiosis strongly. To make matters worse I also have asthma. The latter to the point where I go for months eating very little, because I'm so nauseous.

    For the last few weeks I've been regulalry taking bone broth, which from what I understand is an important source of sulphur, including hyaluronic acid & chondroitin sulfate. I feel much calmer when on bone broth. I've also been supplementing with 15 grams MSM, and this dramatically eases the painful muscle cramping and gives me a boost.

    Molybendum and epsom salt supplementation is next on my list.

    Dealing with these problems as an adult is seriously overwhelming, and I've given up on many occasions. Even if I make only a 30% recovery it would make a huge difference in my quality of life, in pain reduction, both mental and physical.

    Thanks for the posts on here, they're invaluable. And I strongly agree with Radio, the approach must be holistic to work.
    Last edited: Feb 18, 2014
    Radio likes this.
  3. Elph68

    Elph68 Senior Member

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    Hi Nomad,

    Dr Butt from Bioscreen here at the Melbourne University has shown that people with autism have a chronic strep infection .....

    Cheers.
  4. Radio

    Radio *****

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  5. TSoule

    TSoule

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    Hello, I am very new here & struggling a bit. I just started Ribose today per "heartfixer" and was a little freaked when I just now saw Radio's posting that says "WARNING: Ribose can induce mast cell inflammatory response." I have MCAD and now am very nervous as I have taken two low doses of Ribose today (500/500mg each). I am praying to God this information is not always the case...where is this information available online? I carefully research everything before I try it to make sure it is unlikely to be a MC trigger but I apparently missed the "warning."...not great news.
  6. ahmo

    ahmo Senior Member

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    @TSoule I've yet to really digest the contents of this thread, but I'd take Radio's warning seriously. I used Ribose for awhile, per Teitelbaum's recommendation. But, as w/ most his suggestions, it did not work for me. I had no understanding of the various elements of my diet and supps at that time, so there were layers of bad things going on, including gluten, sulfur, and histamines. I only uncovered my mast cell issues during the last 6 months, and have a long way to go in understanding mast cells and MCAD.

    I have no notes from that time, 2008. But I finally understand that it was the elements of the Teitelbaum protocol that pushed me into a toxic psychosis. This included an excellent precursor to glutathione, denatured whey. As well as a sleeping med from his list which, it turned out, contained amphetamine! So to learn that the D-Ribose, which I was using at the time, also affects mast cells, only adds to the list of things that bombarded my brain. I'd be ditching this one if I were you. cheers, ahmo

    PS Do you know of the valuable resources of Dr. Theoharides? Many publications, you could probably even post a question here: http://mastcellmaster.com/index.php
  7. TSoule

    TSoule

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    @ahmo--thank you for taking the time to share your insights! I will definitely heed both your and Radio's warnings concerning Ribose. After I read Radio's comment I did some more online sleuthing and did find that Ribose is used not only in Dr Roberts' Heartfixer protocol as well as Dr.MyHill's, and even Amy Yasko uses it as well, so maybe it does help some people some of the time, even if not all that Dr. Teitelbaum preaches is the be-all, end-all. I am wondering how long you were on Ribose and what your symptoms were. I am very sorry you have had such a rough time of it--all of these "onion layers" of what ails us are really hard to uncover, aren't they--and because we're all different what works for one may cause torment for another. Self-inflicted guinea pig time grows very tiresome.

    I actually felt somewhat energized today after taking the 2 low doses of Ribose, which may have just been a coincidence. If I decide to proceed I will be treading very carefully and slowly, watching for any signs of trouble. Thank you also for the Mast Cells site--had not run into it before although I have read articles by Dr. T (was on Quercetin, etc. per his recommendation before getting off methyl donors to slowly start the CBS heartfixer protocol). Not sure getting off Q was a good idea...so fragile and hard to know which way to go. Meanwhile, I'll be reading and re-reading Radio's profound but overwhelming (to me) info re Ribose, etc., and will tread very carefully if I decide to give Ribose a bit of a try...thank you again for your concern! Will proceed w/ the utmost caution.
  8. ahmo

    ahmo Senior Member

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    @TSoule I wouldn't be able to differentiate what my symptoms were on Ribose from the other things bombarding my brain. But initially I poisoned myself by over-dosing on ribose, something like taking a couple Tablespoons instead of teaspoons.:rolleyes: Heart racing, is what I recall, desperately writing to Teitelbaum for advice. That time of my life is a blur.

    I was also using quercetin, per Yasko. My first anti-histamine. Then I discovered mangosteen, which my body prefers to quercetin, as well as rutin and royal jelly. I dose all my supps by self-testing, and body likes all 3 of these. But rutin for immediate histamine response has been a revelation! Works within minutes. Quercetin is, I believe, high sulfur, and I no longer use it.

    Here are some wonderful, valuable vids from Dr. T. Once I'd come to what seemed all I could do w/ repairing my brain, and still had a huge amount of inner chatter, I watched the 3rd little vid re Neuroprotek. I was reluctant at first, but he's a pharmacologist and expert on this, so I tried it. It's fantastic! It worked within hours, tho he says it takes much longer. And I'm using far less than his recommendations, 1-2/day, once in awhile an extra. I've been awake at 3AM w/ a mind that wouldn't quit, taken one of these, and it's worked w/in 15 minutes.:)

    ‪‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

    Mastocytosis with Theoharis C. Theoharides, MS, PhD, MD, FAA‬http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ

    Neuroprotek http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c

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