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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3 kings to lift you

Discussion in 'General Treatment' started by 62milestogojoe, Aug 4, 2017.

  1. 62milestogojoe

    62milestogojoe What's a forum then?

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    I've been grinding some metal logic in the last couple of days and reflecting on what I've achieved over nearly 6 years of ME. Gone are the 22 hours sleep under a lead balloon.

    We are not only waiting for a cure but waiting for a definite pathogenesis for ME. We are still waiting but everybody on this forum is trying to get better, experimenting in their own way.

    I started experimenting with antibiotics after the first 6 months having contemplated suicide, having wished for a cancer diagnosis so at least they could operate, give me chemo, give me a fighting chance....

    As a state registered specialist biomedical scientist I undertake mostly lab rat work, but we still experiment. We read science papers and we use LOGIC.

    So I'll throw this out to the community-
    I reached the conclusion early on that my brain was being damaged, why else couldn't I spell my name? What was causing me to shiver, slur my words like a drunk, give me headaches, make me intolerant of sound?

    It took me a little while....but I figured there was brain inflammation: see the link for Kansai Osaka university's PET scan imaging of inflamed areas of ME patients' brain here
    http://jnm.snmjournals.org/content/early/2014/03/21/jnumed.113.131045.full.pdf

    What is the number go to King of anti inflammatories? Prednisolone steroid


    I wandered through neurology texts, watched youtube programmes and learned that the brain is incredibly plastic, generating neurons and forging new neural pathways. The logic comes in...your brain is damaged so attempt to promote neurogenesis. How ? Nootropics.

    I was initially nervous about taking noots but did a month of research prior to dipping my grey matter in traditional brain stimulating herbs such as vinpocetine, huperzine A, bacopa monnieri, lion's mane mushroom.

    No ill effects, so I made the decision to try Noopept (pharmaceutical name GVS-111) dosed with the choline source Alpha GPC. Then, the improvements began with a falling off of postural hypotension, less brain fog.

    It is now my fourth year of pulsing Noopept 2 weeks on 2 weeks off. I believe my brain has re-wired somewhat.

    (It should be noted that I have consistently taken up to 20 other tablets a day, the normal stuff we do with ME)

    The recent work from this year's Invest in ME illustrates potential of gut microbiome disturbances. I related my experiences in Ayurvedic medicine on the blog (panchakavya- microbiome ) and a recent experiment I undertook. Probiotics may play a role in helping us fight ME.

    So there it is, the 3 Kings
    Steroids
    Nootropics
    Probiotics

    Not the cure I need or want but perhaps a highly significant helping hand. I am not a lead balloon. I worked 3 days in the lab this week.
     
  2. Bansaw

    Bansaw Senior Member

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    Is there a brand of Noopept and Alpha GPC you recommend. What amounts were you personally taking?
     
  3. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi Bansaw, don't think I'm allowed to endorse products and to be honest I wouldn't anyway. But. I've used 2 companies who provide necessary pharmaceutical purity certificates for GVS-111. Intellimeds and Nootropics UK are reasonable. Following recent UK law changes they companies have, I think, moved into Europe.

    A web search/Reddit will provide you with trusted retailers. I've used Alpha GPC from a broader variety of suppliers who again provide certified products. These, I usually get from Amazon.

    With regard to dosages, when I initially began with a proper sense of caution I used 5mg Noopept with a choline supplement (this can be as simple as scrambled eggs!).

    Later I began using 10mg and still use 10mg or 20mg. Alpha GPC will prevent possible headaches. The Reddit nootropic section has a lot of informed contributors but I would caution you to do your own research and not jump in with 2 feet.

    Some of the contributors joint buy very novel pharmaceuticaIs frm Asian labs. I would hesitate to recommend that route even though it is probably these labs producing the more mainstream noots. I have little interest in taking noots to boost my intelligence. It's all about the brain regeneration for ME. Check out neurogenesis and synaptogenesis, also brain plasticity as a science before you make any decisions. I cannot encourage anyone to try nootropics.

    I have listed only the noots I feel have helped and even with these relatively benign supplements some are better not put together in a stack. Do your research, (it's a big field with lots of associated BS) and be cautious.
     
  4. jpcv

    jpcv Senior Member

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    I tried steroids... it didn´t work for me.
     
  5. Jesse2233

    Jesse2233 Senior Member

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    Thanks for the post, good to see you here again.

    How do you manage long term use of prednisone?
     
  6. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi Jesse, I don't use them all the time. I have used them for the last 2 weeks starting on 20mg and have now reduced this morning to 5mg. Prior to this cycle, I used prednisolone in (I think) May, again for a couple of weeks.

    I would be concerned about long term use, however, I find a noticeable improvement even on 20mg. When the fact of neuroinflammation is taken into account it seems to me too obvious an action not to take.

    Of course, isolating improvement in well-being from a single supplement/pharmaceutical is tricky when most of us take a large number of substances. Synergistic effects cannot be excluded. Of course, the other side of the coin exists too; I believe glucocorticoids interfere with neurogenesis mechanisms ( so you take neuro promoting substances).

    I would like to see an empirical trial of steroid use in ME, so much of what we do in this community is trial and error.
     
  7. Bansaw

    Bansaw Senior Member

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    I did contact ThoughtFoods UK and asked them about their certificate of pharmaceutical purity and there was a long pause and they said, "yes, we have a COA" which to me means "Certificate of authenticity" which might be different.
    I guess you went for the powder so you could control dose.
    [​IMG]
    Thats the Thoughtfoods one. The other one was Intellimeds,
    [​IMG]
    Which one of these did you personally use?
     
  8. slysaint

    slysaint Senior Member

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  9. 62milestogojoe

    62milestogojoe What's a forum then?

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    Thanks slysaint. I'll have a read. I quote myself above though 'Of course, the other side of the coin exists too; I believe glucocorticoids interfere with neurogenesis mechanisms ( so you take neuro promoting substances).
     
  10. 62milestogojoe

    62milestogojoe What's a forum then?

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    I've just spent a couple of hours with my Cap M quick device making up lion's mane mushroom capsules, acetyl-l-carnitine and intellimeds noopept.

    Buy a capper machine and reduce your costs by half on just about every supplement you normally buy in a tablet or pre-capped form. And Bandsaw.....chill, the police didn't catch me doing a ton on the Triumph last week:;
     
    smartin likes this.
  11. 62milestogojoe

    62milestogojoe What's a forum then?

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    Just a thought. Did you read through the Osaka PET scan paper I mentioned? Or at least look at the scans themselves?Consistent results of neuroinflammation in ME patients-so at first glance one may think the use of steroids is a bad idea.

    But, the first paper you mention clearly suggests the following
    the pathological process by which neurons are damaged and killed by the overactivations of receptors for the excitatory neurotransmitter glutamate, such as the NMDA receptor and AMPA receptor.

    Though we still wait elucidation of what is causing inflammation in the brain of ME patients most of the pointers seem to lead to pathogen-immune interaction which fails to resolve. This is not the case in the first paper-and I'll be straight, so far I've only read the abstract.
     
  12. Jesse2233

    Jesse2233 Senior Member

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    Outside of the Ayurvedic treatments, what are some probiotics you've found to be helpful?
     
  13. 62milestogojoe

    62milestogojoe What's a forum then?

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  14. 62milestogojoe

    62milestogojoe What's a forum then?

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    A quick survey of the literature indicates general use of glucocorticoids in CNS infection. (if indeed that is an underlying pathology) I speculated this a while ago in a blog article
    http://forums.phoenixrising.me/index.php?entries/paper-on-cfs-me-the-brain.2088/

    This year's Invest in ME abstracts are encouraging. I was interested to see that Professor Warren Tate agrees with me (yes, I am being arrogant) that Hypothalamic disruption seems to be implicated in ME.

    Work on the relationship between gut microbiome and brain function is in its infancy but looks fascinating. In the light of scientific findings this year a possible model for pathogenesis may be enterotoxin from leaky gut such as coxsackie permeates blood brain barrier, activating brain'd immune system-astrocytes/microglial cells/- cytokine release leading to inflammation and damage to areas of the brain since activated immune defense is not switched off.

    So the 3 kings may be part of the solution here
    1 Repair the leaky gut with probiotics to prevent further leakage of pathogens and toxins
    2 Dampen down the activated immune system with steroids
    3 Repair the brain with nootropics
     
    jpcv likes this.
  15. Jesse2233

    Jesse2233 Senior Member

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    How long did the noots take to resolve your OI and start restoring cognition?
     
  16. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi Jesse, I think the most severe (bed-bound most of the time) period was the first 6 months when I had no idea about potential treatments/drugs/supplements.

    I did the Marshal Protocol over the next year and had begun researching self-help means of medication-and begun looking into the potential pathogenesis of the disease with a view to targeting specific symptoms. I was still severe-but functioning at a low level. I had used up my 6 months full pay and 6 months half pay at work.This is my sixth year of ME. I'm trying to figure out a time scale for you....

    I'm guessing that the noot path (I was already taking 20+ other supplements a day) is now in its 4th year so I would say don't expect quick results. However, on the positive side I didn't lose my job and kept low hours part-time. Over the last 4 years there have been crashes severe enough to keep me out of work for 3 months.

    I guess what I'm saying is there have been bad times despite noot use. Major improvement came after the India trip i.e. 3 months almost complete remission-swimming, gym, cycling, working. There was a blip 3 weeks ago which I'm now over, in fact I've just got back from work in the lab.

    I started off taking non-pharmaceutical noots 4 years ago and then swiftly moved on to exploring the pharmaceutical noots like GVS-111. I pulsed these from the start because they are powerful and its almost as if your brain needs time to process the stimulation at a cellular level i.e. rebuild.

    If you look at ME sleep studies its no shock to see that we with ME do not get to N3 sleep. Look at some studies of what happens to brain's when they are deprived of N3 sleep-not pleasant. In N3, all the molecular debris produced by the brain is flushed-no wonder ME patients are f....d.

    Free radicals are produced in the brain as part of normal metabolic processes and inflammation. Therefore, in conjunction with noots I started looking at ways of minimizing oxidative stress in the brain hence use of selenium, zinc, vit c/e, coq10, l-arginine, glutathione, lipoic acid, curcumin, omega 3 and flavanoids as found in 85% chocolate.

    I take all supplements in the morning with a home-made superjuice containing lots of antioxidants like berries, lyophilized friut and veg etc. I guess what I'm saying is its not been a one prong attack. And I still never made N3 sleep despite trying evrything natural and paharmaceutical under the sun (closest is 5mg mirtazapine).

    It was only after the ayurvedic treatment that I got to N3 and that is more like 2.9 now. I think the noots have played a substantial part of my 'recovery' and I continue to take them.

    On the cutting edge of noots is NSI 189 which is still in 3rd stage trials. This is a US military funded project to address personnel with PTSD (shares some symptoms with ME). In the lab, mice subjected to NSI increased the size of hippocampus by 80%. I took 20mg a day but would treat it with caution-I had flashbacks to memories I had completely dispensed with. I have tried so many things to get a life back!

    I hope this has answered your question, the simple answer however is 20mg Noopept with a good choline supplement, I think your brain fog will begin to clear within 2 weeks (if you are not in an already crashed state).
     
  17. Jesse2233

    Jesse2233 Senior Member

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    Interesting, how did you acquire NSI 189 and how do you measured whether you're in phase 3 sleep?
     
  18. 62milestogojoe

    62milestogojoe What's a forum then?

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    Go straight on, take the second left, cross at the lights and the shop is on the corner...sorry I am being facetious.

    In lab conditions encephalography is used. For you as a person with ME who doesn't have access to that technology you will feel that you have been deeply asleep with concomitant sensations of refreshment and satisfaction as per before you were diagnosed with ME. You have been diagnosed with ME Jesse?
     
  19. Jesse2233

    Jesse2233 Senior Member

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  20. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    I would only ever recommend corticosteroids only for a particular kind of eminent life or death situation and use that does not extend beyond a couple of weeks.

    Corticosteroids are not really anti-inflammatories, they are just chemical messages produced mainly by the adrenals. Use of corticosteroids is extremely dangerous. Manmade corticosteroids have too long a half life - partly by intent, with the result that it may result in atrophy and failure of the adrenals - a very bad consequence...adrenals are really not expendable body parts, they are essential to life itself. There are other very horrendous consequences to using corticosteroids which is why they are a tool of last resort in autoimmune reactions. THIS IS SOMETHING YOU REALLY DON"T WANT TO TRY.

    I've been through hell with corticosteroids and they're consequences are a primary reason why I ended up on this forum. Please do a vast amount of research before every recommending corticosteroids to anyone.

    There are many natural anti-inflammatory compounds in food, concentrates in supplement form. Further a dietary deficiency of required nutrients may be at play in some inflammatory and even auto immune syndromes. Food sourced compounds are what your body depends on to function, so it is wise to check that out.
     

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