Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Healing the brain

Discussion in 'General ME/CFS Discussion' started by Martial, Jul 2, 2014.

  1. Hip

    Hip Senior Member


    One supplement that might be beneficial for you for ameliorating low blood flow to the brain is vinpocetine, say 10 to 40 mg daily (must be taken with food). Vinpocetine has been shown to increase brain blood flow and brain oxygenation (refs: 1, 2). I take vinpocetine daily; I find it helps with brain fog, and also seems to boost mood a little bit.

    Acetyl-L-carnitine 1000 mg daily is another good one for brain blood flow (ref: 1). I take ALC daily also.
  2. Aerose91

    Aerose91 Senior Member

    Hey Martial,

    Man I have to be honest, what you describe sounds a lot like adrenal fatigue. At this juncture we know that the source of it is in the PVN of the brain but your adrenal output goes down nonetheless. When I had it bad I would get killer pain in my kidneys (it's actually your adrenal glands because they sit on your kidneys) and test production goes down with AF as well. LOoks of times so does HGH and DHEA, pregnenolone and others. Given the issues with infection in your brain that could definitely explain the disrupted signaling.

    When I had my SPECT scan the guy who read it told me that major hormone imbalances will show up in brain scans as sights that look like injuries. He told me my brain looks like that of a retired football player and I was 28 at the time, never having played football. As the hormones rebalance themselves from the brain insult healing things shoukd correct themselves.

    I would agree to check out Dr Jack kruse- you may really enjoy him, he's incredibly intelligent and an outside the box thinker which I know you can get behind.
  3. adreno

    adreno PR activist

    A SPECT scan is very different to a MRI scan. The former is functional, the latter structural. So a MRI show structural damage, not hormonal influences.
    Last edited: Jul 9, 2014
  4. stevesayshi


    Have you tried piracetam? It improves signaling between hemispheres and vastly improves blood flow (it increases red blood cell flexibility, too). Dose varies wildly, 500 mg up to 20 g daily, divided into 2 - 3 doses. There is a TON of research into its use in neurological disorders.

    Most people need some amount of choline (lecithin, choline bitartrate, alpha GPC, citi choline are all various forms) with it to avoid headaches and irritability. Too much choline can make you tense, anxious, or depressed. You usually need much less choline than piracetam. Dose depends on the type of choline and had to be found by trial and error to some extent.
    Last edited: Jul 10, 2014
  5. chipmunk1

    chipmunk1 Senior Member

    I am not an expert when it comes to SPECT scans but in my opinion such wordings are a bit irresponsible. I often heard that they would compare SPECT scan to long term drug addicts,alcoholics, alzheimer patients ect and then tell the patient your brain looks like one of them.

    SPECTs don't show structural damage but blood flow. This can change very quickly it does not necessarily show long term damage. SPECT is a great thing because it can show problems before they show up on the MRI but i would be a bit skeptical if they compare it to permanent brain injury cases. Not saying that it can't indicate serious damage but it doesn't have to.
  6. Aerose91

    Aerose91 Senior Member

    Couldn't tell you exactly. I had massive hypoperfusion but on top of it had "scalloping of the brain" as they put it. He said this indicates past brain injury.
  7. Martial

    Martial Senior Member

    Ventura, CA
    Well I have an obvious hormone imbalance due to my illness making my testosterone drop to 150, but that is not the normal kind of adrenal fatigue Imbalance either. This is majorly low that would require permanent test replacement the rest of my life. Luckily I know I have a chronic illness going on and this is really one of if not the only times the body produces such little testosterone unless someone genetically inherited hormone issues, certain brain tumors, etc.. So they said it would just need to clear up while dealing with the infection.

    I never had a single problem before getting sick and was a strength athlete with a very impressive physique and strength numbers. I know I looked a lot into adrenal fatigue and its treatments and they always mentioned usually the only test to catch it is with a 24 hour cortisol saliva or blood test. I know that adrenal issues are also probably a big problem in my case as well, not much I can do about it aside from letting my body repair itself and clearing this all up. I am also working on adrenal things with everything else I do now. I appreciate the input Aeroes! I hope you are feeling much better yourself as well!

    I have looked into Piracetam before but heard about some strange unwanted long term effects, I stayed away from it for a while because of that. I guess you can say I am just very picky about what I take and usually try to be as conservative as possible. I already have ALOT of symptoms from my physical issues, I don't want to try to mitigate figuring out what is from herxes, medications, interactions, etc... I am gonna have to investigate into it though and ask my doctor. The negative effects seem very rare and the wide plethora of benefits is too awesome to ignore, especially since my issues are so neurological and brain related.
    Last edited: Jul 11, 2014
    Wayne likes this.
  8. stevesayshi


    I totally get where you're coming from there. Unfortunately, your doc isn't too likely to know much about it. Scienceguy over at longecity is recovering from neurolyme in large part due to "heavy" Piracetam doses, in case you hadn't seen it. I'm not sure if he mentions that fact in this particular thread.
    Wayne likes this.
  9. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

  10. amaru7

    amaru7 Senior Member

    I'm a piracetam non responder. It has absolutely zero effect on me. I've spend thousands over the years trying to improve and heal my brain, but to be exact, it didn't make an earth shattering difference. Slight improvement in cognition maybe and since I'm sober for a while now, I think this has had the biggest effect on me personally.

    My memory is still terrible though and I'm still very much depressed and suffer social anxiety amongst other things.

    My biggest dream for a long time was to find the right substances to transform my mind and my life to a better level and I think many others still have this wish.

    But for me this dream is over after I've spent a fortune for too little improvements. Now I try to work on the way I approach things in my life and try to make the very best out of what I have, before I leave this life.
    ahmo and Wayne like this.
  11. jeffrez

    jeffrez Senior Member

    Co q-10 + Pyrroloquinoline Quinone (PQQ)

    Pyrroloquinoline Quinone (PQQ) is a recently discovered compound that is part of the B-vitamin family with potent antioxidant and nerve growth effects. It works as an antioxidant within mitochondria, protecting it from oxidative damage. There are a number of animal trials that have shown exciting effects on nerve regeneration and growth. A study conducted in Japan in elderly patients found there was an improvement in memory after 12 weeks when PQQ and Coenzyme Q10 were supplemented together. They also found a 40x higher level of BDNF and that the antioxidant effect of PQQ was 30 times more effective than vitamins C or E.

    taken from this page, fwiw:

    I just started a thread on this very topic today (increasing BDNF to preserve/increase white and grey matter) but for some reason the mods are "reviewing" it? I don't know what that's about, but I'm very interested in this topic. I'm going to ask my sleep doc for SSRIs just for their reported action in increasing BDNF - and hey, if you also get an antidepressant effect, what's wrong with that? Lol

    In the other thread (if it ever get posted), I mentioned ALA, zinc, gingko, listening to music, EEG neurofeedback, and meditation as BDNF-increasers. Here are a few more I've found:

    Memantine, Agomelatine, Riluzole

    Most antidepressants, as far as I know (maybe all of them)

    Lithium (which also is neuroprotective in other ways, through reducing glutamatergic excitotoxicity mainly, I believe)

    Transcranial magnetic stimulation


    Mediterranean diet

    Fish oil

    Active components of ginsengs (e.g., ginsenoside)




    Metrifonate (acetylcholinesterase inhibitor)... which leads me to want to start researching other AChE inhibitors, including huperzine A (my strong guess is that hpz A will increase BDNF, though I don't know that for absolute fact yet).

    Lots of research still to do - I looked into nerve growth factors and BDNF a few years ago, but the recent post on Cort's site in re: white and gray matter reductions in the CFS brain reminded me of the topic and rekindled (no pun intended) my interest. I'm hoping there is a chance for a lot of functional improvement from this BDNF angle, although obviously it won't be overnight improvement. I'll be glad even to forestall any declines, though.
    Wayne and adreno like this.

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