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mitochondria damage in the brain

Discussion in 'Cognition' started by Aerose91, Mar 21, 2014.

  1. Aerose91

    Aerose91 Senior Member

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    Is there any difference in trying to treat this vs mitochondria in the rest of the body? And is it caused by the same thing? According to my SPECT I have extensive mitochondria damage in my brain and it has never fluctuated, not even once, since this disease started. In fact, most of my PEM episodes have damaged exclusively my brain and not my body at all.

    Nothing has helped me at all yet but I'm wondering if there are any different procedures that may effect your brain more so than body.

    I wonder also if the location of the initial infection has anything to do with it. I had encephalitis and my brain has been 80-90% of the problem for me. Will the mitochondria be damaged more at the site of the infection?
  2. Radio

    Radio *****

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    Hey, Aerose

    Have you try lipid replacement therapy or coconut oil therapy?
    Last edited: Mar 22, 2014
  3. Aerose91

    Aerose91 Senior Member

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    I eat a ton of coconut oil and coconut products in general and have for years. My doctor wants to put me on phosphatidylcholine but he said not yet because he wants to do some work on Candida and heavy metals first. Not sure when that's coming tho.
    Radio and merylg like this.
  4. Martial

    Martial Senior Member

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    Do you have any amalgam fillings or a history of eating a lot of ocean fish like tuna, or any other means of excessive exposure? PQQ is one the best supplements to help repair the brain and heal the mitochondria alongside a proper methylation protocol with NT Factor. The good news is the brain is highly repairable and I am doubtful you will have any long term issues, you just need to fix what is underneath and causing issues so normal brain functioning and cerebral blood flow can start again. Again though I really think you should follow through with the lyme, that would make the most sense as not many other conditions can make mark able long term brain inflammation, and hypo perfusion without obvious test abnormalites. POTS/ and EDS may cause reduced flow but it is a bit different then the kind of issues that are triggered with a chronic encephalitic state like lyme.

    Is it actual damage to the brain or hypo perfusion? Hypo perfusion will have reduced blood flow to certain regions but it is not the same kind of damage from say a head blow trauma..
    tdog333, merylg and Radio like this.
  5. Aerose91

    Aerose91 Senior Member

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    Hey dude

    Well there's definite hypoperfusion according to my SPECT, and they believe inflammation. This has only gotten progressively worse over the past year. The hypoperfusion has gotten much worse on several occasions due to over exertion and has never recovered.

    I saw my doctor last weekend he actually didn't spring for the Lyme test because he said I wasn't showing classic symptoms. He said if I had Lyme I would be sleeping a lot and in more pain- I never, ever sleep and have severe Dysautonomia. I would still like to get the test done but I don't know where now.
  6. adreno

    adreno 3% neanderthal

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    Tundras of Europa
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    memantine can reduce glutamate and nmda and this can help reduce damage and oxidative stress in the brain.
    Many nootropics as adreno has mentioned piracetam can help but there is a few different sort as well as cholinergic supps which can help. Alpha gpc i found helpful for brain function.
  8. Martial

    Martial Senior Member

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    I would follow through with it there is no classic symptoms per say, it effects different people in different ways. That is why you need to see a specialist in tick borne infectious disease an LLMD would much better be able to help you if it is lyme disease.. Sadly even some of them can do some harm if they try to push you too hard with antibiotics while still being toxic.. It is important to find a very competent doctor. You could always stay in contact with me if you do find an LLMD and share your treatment options. Through my own experiences I have found what works, what doesn't, and even what can be very damaging i.e. IV antibiotics on a toxic loaded, sensitive herxer.

    My own symptoms would go all over the place and seem to morph from week to week with some common underlying ones generally staying the same, like pinched nerve feelings, nerve pains, cognitive issues, etc.. the hypersomnia would come and go. Again though lyme is very non specific and effects different people in numerous types of ways..

    Have you gotten any blood tests done? I know there are specific markers you can use to better access possible lyme even without an IgeneX test. The best test which will always inform you quickly is CRP if that comes back with elevated levels this is very instinctive of cancers, lupus, arthritis, and lyme, among a few other things.

    Other blood tests like CBC will show slight anemia at times, CMP will show elevated glucose levels, there may be changes in albium blood levels, strange changes in the shape or development of red blood cells, heightened WBC count, or very Low..

    Lyme messes with our normal neuro transmitter levels and is very common to cause HPA dsyregulation, it even effects testosterone, hormone production, and thyroid function so those may also show up strange...

    Actually your symptoms quite match Yolanda Foster's a beverly hills housewife who found out she had lyme from discovering damaged brain pathways, then getting proper testing to find the cause and treat it.

    check out this linked video of it

    http://abcnews.go.com/GMA/video/real-housewives-beverly-hills-star-battles-lyme-disease-22476894
    Radio likes this.
  9. Aerose91

    Aerose91 Senior Member

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    Hey man I checked out that link- interesting.

    I'd have to say though that lady is doing 100% better than me, I can't stand upright for more than a minute and even walking to the car and back is over exertion which will be with me for days, weeks or months. Since this started a year ago my sleep has been all over the place and generally really bad. The past few months I sleep about 45 minutes a night, broken. It is a big reason for my constant downward slide but nothing helps me sleep at all. This was the big factor in my doctor swaying away from Lyme because he said Lyme usually causes hyperhypersomnia. To be honest from everything I've seen I don't fit CFS or Lyme exactly, but I do fit the hfme.org definition of M.E. to the T. This is especially true because of how sensitive I am to exertion, any and all is bad for me.

    I've had thousands of blood tests done at this point- the only things of note have been low white blood cells during the initial encephalitis, low NK function, high LP-PLA2 signifying cell membrane damage, Very low ADH, high led and Candida. I'm going on Diflucan next week in hopes that it will work but 2 past experiences with nystatin did nothing for me. All of my immune markers have come back normal though- c reactive protein and neopterin.

    I got the bill of Bartonella or Babesia better so I still want to get the IgeniX test but I'm not sure how to, now. I could go find another LLMD but I don't know if they will order it or not.

    BTW, how is your recovery coming?
    Last edited: Mar 22, 2014
  10. Martial

    Martial Senior Member

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    Wow I did not know all that, I am so sorry to hear all that Aerose, it sounds very challenging indeed... I hope you can start sleeping better soon that will definitely help with a huge portion of things.. to be honest I would be going Insane If I only slept that much lol... Yeah Lyme can cause hypersomnia but also regular insomnia, and a million different things again its never specific to one size fits all.. A stone cold normal CRP test is maybe unusual though, Lyme is known for having at least some degree of internal inflammation. It would still very much help to get the test done though! Not everyone necessarily needs the same symptoms or inflammation. Some people end up with brain issues if the bacteria is mainly in the brain, others have joint issues and inflammation, those like me have it with the nervous system and brain.. I am lucky to have a pretty typical case so It was easy to diagnose and get treated.. Though for you I think it would be really beneficial to clear out all possibilities. I don't know of any other cases of M.E. with actual inflammation of the brain and damage. Mitochondrial damage is the result of some kind of toxin or infection though.. At least a proper methylation protocol can heal all of that and normalize cellular health and development again! The good news too is that they can fix your brain man, there is SO MUCH out there for this and like I said you have plenty of options!

    I would definitely try to look into possible mycoplasma, and parasites as well..
    Radio likes this.
  11. Aerose91

    Aerose91 Senior Member

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    Yeah the chronic sleep deprivation really makes things harder, especially the Dysautonomia. That's been VERY severe since the beginning.

    I have high m. pneumoniae, parvo, and HHV-6, though Dr Enlander doesn't have me on any treatment for them.

    I sure hope there's impossibility of resolution of this, man. My brain is just so, so far gone and combined with all other symptoms and such severe PEM it's hard to picture ever being able to lead a normal life again, let alone my life as a FITNESS INSTRUCTOR. Lol, activity was my whole life and I happen to get the one disease where activity is the worst thing you can do.

    Anyway, always appreciate the help, dude. For what it's worth, I live on rags these days cuz of no income but I put in for your treatment. Not gna get u much closer but.it's something. I'd be happy to see you get that treatment and pull out of this.

    Jeff
  12. Radio

    Radio *****

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    I would focus on improving blood flow to the brain with supplements like Ginkgo Biloba, nattokinase and green tea extract to help reduce mitochondrial swelling. Also, lysine and selenium could be beneficial for inhibiting viral replication. Low dose cod-liver oil is worth trying if you have not done so as well. It's impossible to regenerate brain function with out regenerative sleep. It is essential for you to find a way to sleep even if you have to go the drug route.



    Life Extension, Mega Green Tea Extract, Decaffeinated

    http://www.iherb.com/life-extension-mega-green-tea-extract-decaffeinated-100-veggie-caps/7723?at=0
    Last edited: Mar 23, 2014
    merylg likes this.
  13. Aerose91

    Aerose91 Senior Member

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    I'm going to have to explore drugs for sleeping because I get next to none. My doctor said this is because the Dysautonomia is changing my sleep/wake cycles and my insulin levles, which also keeps me awake.

    Every time I have over exerted I have sustained further damage to my brain which has never healed. Lately, I have been developing worse OI and POTS though, I wonder if they were always a factor and keeping blood from getting to my brain.

    If you fix the mitochondria issue though won't the blood flow issue be corrected as well?
  14. Radio

    Radio *****

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    I think the blood flow issue is caused by mitochondria swelling, Apoptosis cell death. This is why it's imperative that we start mitochondria supportive therapy at the on set of CFS/ME. There is a progression to mitochondria damage that needs to be talk about at some point. I feel its important to let forum members know full recovery may or may not be possible and long term supportive care may be needed. There may be still hope for many to recovery some of there still functioning mitochondria. Don't give up!



    Green Tea Polyphenols Stimulate Mitochondrial Biogenesis and Improve Renal Function after Chronic Cyclosporin A Treatment in Rats

    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0065029

    Green Tea Polyphenols Block Endotoxin-Induced Tumor Necrosis Factor-Production and Lethality in a Murine Model
    http://jn.nutrition.org/content/128/12/2334.full
    Last edited: Mar 23, 2014
  15. Aerose91

    Aerose91 Senior Member

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    My doctor said he wanted to test my levels of inflammation and immune activation in my brain as well as looking at cell death- I'm not sure if this is apoptosis or not.

    For immune activation he measured neopterin-
    range 100-160, mine was 148 (normal)

    For cell death he measured nucleic oxidative damage, to DNA:
    8-oxo-deoxyguanosine, range 10-16 mM, mine was 13 (normal)

    and to RNA:
    8-oxo-guanosine, range 18-36 mM, mine was 31 (normal)


    For membrane phosphorous oxidative damage he measured
    8-iso-PGF2 alpha, range 80-130 ng/gCr, mine was 91 (normal)

    My LP-PLA2 came back a little high at 203ng/mL, the range being 131-199. He said this signifies cell membrane damage but not exactly sure of the reason.

    I don't know much info about these tests but from what he told me this means I do not have immune activation in my brain or increased brain cell death. We are probably going to be doing a mitochondria test soon as well. This is good for me to hear but still doesn't get me out of the woods or fix what's going on in my brain.

    Are there different tests that should be done to measure apoptosis or other damaging factors? And when we talk about this being time sensitive what generally is the time frame? I've heard 5 years, is this a reference to where the mitochondrial DNA gets too damaged to repair?
  16. Martial

    Martial Senior Member

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    Hey Jeff I think you still have plenty good prognosis! fixing the brain pathways is something very possible thanks to recent discoveries and advancements in technology and the health care field! Thank you so much for the donation too man! It really means a lot! I definitely want to do what I can to help you recover too, luckily enough one of my good traits is intellect and I think I could probably help you ongoing to find a source of what is your issues, and help find some good things you can use to heal!

    You also have not been sick that long so I have no doubt you will make a full recovery as well!
    I myself am actually doing much better since starting my own treatments and it is just a matter of time before I have my own perfect health again too! :)
    Radio likes this.
  17. tdog333

    tdog333 Senior Member

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    If you want nystatin to work you need to put it in an enema and administer it rectally as well as orally(but don't use the enema for oral administration LOL), and stay on it for at least a few months. You will also need to lower the amount of sugar and white flour you consume. I highly recommend checking out SF722. I have beat candida but am dealing with some immune system issues which make it hard to keep it at bay. Once i treated my candida almost every symptom I had except CFS and a few other minor ones went away.

    Worth looking into:
    Gynmena Sylvestre - 2 pills a day morning and night
    SF722 15 pills a day
    Ellagic Acid pills- 2 a day
    Coconut oil or Lauricidin (also amazing antivirals)

    Also consider Bactillus Coaguluns and once you finish treatment take Saccharomyces B. to keep it down. Be careful with the B.C if your immune system is really bad though.

    If you want more info let me know, I can link you a bunch of articles and give you more info on candida. I've been studying it for over 3000 hours now.
  18. Martial

    Martial Senior Member

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    These are very good findings Jeff! This means there is nothing currently causing active damage to the cells themselves for now, alongside the other results of normal CRP this could mean you are very low risk of further damage to recover.

    I know you mentioned having worsening brain functioning with each setback, how did you find this out though? Is there something actually showing up on tests or is the OI/POTS just getting worse each time? POT/S is an obvious thing to happen when you are not getting correct blood flow to the brain, however this is fixable and once you get proper blood flow again the POT/S will cease to stop throwing everything off.

    There was a possible treatment discussed from a member here before on getting perfusion back into the brain again, it has proven very successful for different people and I think it could definitely benefit your case as well. I would be sure to go over this with your doctor though and make sure to see if he thinks it is something you can try.

    Here is a link!

    http://forums.phoenixrising.me/inde...o-from-here-very-long-post.21546/#post-329290

    Its a drug called Diamox and the post is made from a member named mishmash.. It is actually just a diuretic and pretty harmless of a drug over all, I think its a good chance to try it out and see what happens!


    Also some supplements work very well in restoring perfusion to the body organs!
    I would try and get these asap! possibly in a combination formula. They are as follows!

    Nattokinise, Serrapeptase, lumbrokinease, and Bromelain.

    Here is a research paper regarding these enzymes!

    http://lassesen.com/publications/FibromyalgiaPain.pdf
    merylg and tdog333 like this.
  19. Aerose91

    Aerose91 Senior Member

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    Martial-

    First off, Thats AWESOME that you're already feeling better. I'm sure this signifies that perfect health is on the not so distant horizon for you. I'm real happy to hear it, man. And I greatly appreciate all the help, I fancy myself a fairly intelligent person as well and stubborn as hell, tho not always sure if that works in my favor!

    In terms of my reduced brain function after PEM, it was just a kick in the face when they happened. The first was after taking a long drive to see a doctor, the next day I woke up and was massively more dissociated and there was a very eerie silence in my brain. I just felt much more spaced out and my memory had declined as well. Just an overwhelming..... nothingness. Second was after a short walk, I don't know how to really describe it but even while i was walking I could feel more "depth" of life fading away, like layers of my being were going down, leaving me with a much greater feeling of emptiness. The third and worst was when I first traveled to NYC to see Dr Enlander. It didn't hit me until about 4 days later but I woke up in the middle of the night extremely revved up; nerve pain, sweating, shaking, loud tinnitus, heart pounding- but at the same time I could just feel parts of my brain going down. I could feel my very ability to feel existence, being, time and ability to process thoughts diminishing. This went on for about 3-4 hours until it began to calm down, however I was left with the deficits. This was the one that really brought me into psychosis because I now have a lot of trouble keeping grasp on the very little reality left that my brain can feel.

    I have never recovered from any of these instances. It almost feels like my brain doesn't have the power to access certain parts anymore.

    One thing i will mention tho that is interesting is that when this first started for me I had more classic brain fog symptoms- cognitive problems, speech problems, math problems etc.. Then, the first major setback I had (after that long drive), instantaneously almost all of my cognitive deficits went away and got replaced by this lack of presence, dissociation and hollowed feeling. Its like the hypoperfusion just moved to a different part of my brain. That's the only thing I can think of.

    The first 6 months or so of this illness it was almost exclusively brain problems but now those have slowed down and the physical symptoms have been increasing- fatigue, muscle weakness, nausea, POTS, OI. To the best of my knowledge I didn't have OI before a couple months ago but I have been told that I may have but just couldn't feel it. Either way, it sucks more than anything in life has ever sucked before. My parents constantly ask me to explain what's going on in my brain to them and the only response I can give them is just "my brain is so, so far gone"

    Thanks for all those links, too. In regards to diet I haven't eaten sugar or any flour for the better part of a decade. I also am heavy on the coconut products and ferment my own coconut kefir. I sure hope this can get rid of the Candida and allow my diet to do some good for once. My doc is going to put me on lipid therapy soon to treat the cell membrane damage so I'm hoping that will reap some benefit. Then maybe things will start working correctly again.

    So I guess I'm not quite sure- is brain dysfunction due to hypoperfusion from some sort of blood reduction or is it hypometabolism due to mitochondria damage? Or both?
  20. Radio

    Radio *****

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    Nice posted, We have some really smart people in this forum. I learn something new everyday..Thanks!
    I cycle green tea extract on and off to limit its toxicity to the liver as well...

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