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Mitochondrial encephalopathy

Discussion in 'General ME/CFS Discussion' started by wastwater, Nov 12, 2013.

  1. wastwater

    wastwater Senior Member

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    Im thinking this is what I may have and am going to try follow this route,got appointment to see a geneticist not sure how this could be tested for.
  2. Aerose91

    Aerose91 Senior Member

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    This is interesting to me- may I ask what your symptoms are?

    This disease for me is 95% in my brain. It started with encephalitis which seemingly never went away and has now progressed my brain to some of the darkest depths of hell. I would like to know what mitochondrial encephalopathy is all about
  3. wastwater

    wastwater Senior Member

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    EBV onset then persistant fatigue and mental confusion.I identify with youre altered state of consciousness and dissociation.Have you had thyroid tested and vitamin D levels.I think if you have high levels of cytokines for a long time it starts destroying glands and pickles the brain.
  4. wastwater

    wastwater Senior Member

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    Valentijn likes this.
  5. Aerose91

    Aerose91 Senior Member

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    Yes I've had almost everything under the sun tested- vit D and thyroid are fine. All of my autoimmune tests have been fine but I'm going to get tested for cytokines soon. The altered consciousness and severe severe dissociation almost has me at a point of psychosis. I had a SPECT scan recently and it showed severe hypo perfusion and signs of toxicity so they suspected mitochondrial or toxic encephalopathy. Do your symptoms ever fluctuate? Mine are the same all the time- never get better b

    I'm looking into stem cells for this too.
  6. wastwater

    wastwater Senior Member

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    Mine is constant bad and worse on exertion,but not muscular
  7. Aerose91

    Aerose91 Senior Member

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    Likewise, I occasionally get muscle weakness or pain but only on overexertion episodes, however the only thing that is constantly effected is my brain, and bad. When I overexert it causes permenant progression of the disease in my brain. Little to no pain or fatigue
  8. wastwater

    wastwater Senior Member

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    The cytokine testing sounds interesting,dont think they do anything like that in the uk.toxic encephalopathy might be a good route would the toxic part be cytokines
  9. wastwater

    wastwater Senior Member

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    http://www.encephalitis.info/ This is a good place for info on encephalitis,remember encephalitis is serious and rare it usually puts you in hospital with seizures and such.Thats why I prefer the term encephalopathy because its a catch all for the unknown and mine feels sub acute .
    Last edited: Nov 13, 2013
  10. Abha

    Abha Abha

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    Hi Aerose91,

    I see you have had a SPECT scan done recently.I have been checking re that recently(Amen Clinics).If you live in Uk please let me know where you had it done and how much it cost..Thanks.
  11. Aerose91

    Aerose91 Senior Member

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    I'm pretty I certain that mine started with encephalitis because I had every single symptom, including two small seizures, but it lightened up after 2 weeks and turned into this. I was later diagnosed with encephalopathy. I've heard the other term interchanged with this as sub-acute encephalitis.

    My doc said the toxicity could be from hormone imbalance, medications, drugs/alcohol, I'm not sure about the cytokines tho, it's a good theory. Ill let you know what I find out or if im even able to get these tests
  12. Aerose91

    Aerose91 Senior Member

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    Yes I had a SPECT because y brain is in such bad shape and my MRIs came back clean, and I was sick of being so such while people told me I need a psychiatrist.

    I had mine at Amen Clinics, the quality of the scan was very good. There are different packages you can choose from that involve a resting scan, post exertional scan, QEEG and various meetings with psychiatrists.

    I chose to do the basic package with just the resting scan and a meeting afterward with a doctor to review my results. They also gave me everything presented in a nice binder with multiple copies if my results. The total was $2400, not cheap. The scan itself was $1,100 but you have to do some of the follow up visits with psychiatrists in order to be allowed to do the scan- the total is 2 days.

    That was all the money I had left for that scan but I thought it was necessary, and it was

    Here are copies of my scans. The colored ones are external blood flow and the blue/red ones are deep activity.

    Attached Files:

    amaru7 and Abha like this.
  13. Aerose91

    Aerose91 Senior Member

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    Wastester

    Was your onset acute or gradual? Mine was extremely acute, I can narrow it down to the minute everything started
  14. wastwater

    wastwater Senior Member

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    Mine was acute onset have the date written down somewhere think it was around 1994.I was interested in QEEG think theres a place in London that does that.What does youre spect reveal I had a quick look at amen does yours fit best with anxiety
    Last edited: Nov 13, 2013
  15. Wayne

    Wayne Senior Member

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    Mitochondrial dysfunction, which seems to be prominent in ME/CFS, disrupts aerobic energy production. When this happens, the body reverts to (very inefficient) anaerobic energy production, which produces a by product of lactic acid. Lactic acid is thought by some to cause brain fog, PEM and the pain of fibromyalgia.

    A therapy I'm learning about is to take baking soda dissolved in water to quickly reduce lactic acid levels. Apparently there's a term "soda doping" which some athletes will do to counter lactic acid buildup from strenuous exercise. I've heard the Olympics has outlawed this practice because it's so effective.

    The dosage I heard is 1/4 tsp baking soda (non-aluminum) to 1 cup water. I just tried it tonight for the first time. Felt slightly woozy for about half an hour, and then started to feel better than before taking it. So am in just the initial stage of testing this for myself.

    Best, Wayne
    Last edited: Nov 14, 2013
    cigana, Abha, Little Bluestem and 2 others like this.
  16. Aerose91

    Aerose91 Senior Member

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    I was hoping that my SPECT would show anxiety actually because then I could blame the severe dissociation on that, but he said no, quite the opposite- my brain was under active.

    Wow, 1994, I'm so sorry. Have u had the severe dissociation and altered conciousness the whole time? Any remissions or PEM setbacks?
  17. Abha

    Abha Abha

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    Hi Aerorose91.

    Sorry due to health issues I haven't been on PR recently.Thank you for your detailed reply.I'm busy today but I'll need to digest what you have written and then perhaps I'll get back to you.Those scans look interesting!
  18. Daffodil

    Daffodil Senior Member

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    I have experienced EXACTLY what you describe since 1993, after mononucleosis. I have almost taken my life many, many times. Like you, the disease was mostly in my head, but eventually progressed to a total systemic situation.

    I am a little better now.

    I am told my brain fog is due to lactic acid. Recently, baking soda in water was suggested to me. Has anyone here tried this?

    Thanks
    xox
  19. Wayne

    Wayne Senior Member

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    Hi Daffodil,

    Please see my post just above (#15). I've totally spaced out taking more baking soda since I did that single dose a month ago. Time for me to try it again! --- Here's a bit more information I've discovered since that post. --- Baking Soda, Apple Cider Vinegar, and Dichloroacetate all reduce lactic acid buildup in body.

    The quote below is taken from this Journal of Oncology article:

    Non-Hodgkin's Lymphoma Reversal with Dichloroacetate
    Here's a bit of a blurb from my word processing notes:
    Last edited: Dec 13, 2013
  20. shannah

    shannah Senior Member

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    Hi Daff,

    I've been doing baking soda for a number of months now. I've had to proceed with increases v-e-r-y slowly as there's certainly a 'die-off' or detox reaction that's nasty.

    Although there's still lots of room for improvement, there's been definite benefits. Cognition has improved. I'm sure it will improve more as I can tolerate increased doses. Muscle pain clears more with each increase. I'm also able to be upright for short periods of time more often. Perhaps digestion has improved somewhat.

    Other than clearing lactic acid from the body, I've read it also transports oxygen, increases the PH balance, is considered a remedy for yeast/fungus/mould, can bind oxalates in the body, is an antimicrobial folk remedy taken by many old timers and of course there's a cancer protocol utilizing baking soda.

    The only downside for me is, like a said before, increases have to be very tiny and slowly introduced. I think it may also deplete magnesium or potassium because every once in a while there seems to be an increased need for those supplements.

    If you try it, I'd really like to hear how you make out with it.

    All the best,
    shannah
    Wayne likes this.

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