Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Questions Answered by Dr. Naviaux

Discussion in 'General ME/CFS News' started by RL_sparky, Sep 13, 2017.

  1. melihtas

    melihtas Senior Member

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    Istanbul Turkey
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  2. PinkPanda

    PinkPanda Senior Member

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    No, i didn't. Thankyou!:)
     
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  3. fingers

    fingers Senior Member

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    SW Endland
    2 day CPET should give a fairly robust assessment of improvement or otherwise. Pedometers, not really...many of us can easily go out and walk/run/cycle/swim/row etc. ourselves silly, just that we'll feel dreadful in the ensuing days - pedometers can't measure that. Add a heart rate monitor and you might be talking.
     
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  4. Wonko

    Wonko Senior Member

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    The other side.
    Many of me can't.
     
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  5. fingers

    fingers Senior Member

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    My point about methods still stands.
     
  6. enduin

    enduin

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    @Janet Dafoe (Rose49),
    I’m thrilled that Ron Davis is open to considering input and possibly testing Nandixon’s idea! There is something that occurred to me after reading Nandixon’s idea to test IL-6 antagonists to narrow down Suramin’s mechanism of action: would Ron also test antipurinergic chemicals that are NOT antagonists for IL-6?

    IF this hasn’t been considered already, I think it would nicely complement the tests with Tocilizumab to provide useful evidence in favor of (or to rule out) the role of P2 receptors in CFS.

    In particular, I think that the blue dyes RB-2 (Reactive Blue 2) and BBG (Brilliant Blue G) would be quite interesting to test. RB-2 is an antagonist at all but one of the same P2 sites that are antagonized by Suramin while BBG antagonizes the remaining receptor site not addressed by the RB-2. (http://www.nature.com/nrn/journal/v7/n6/fig_tab/nrn1928_T2.html?foxtrotcallback=true)

    The downside of RB-2 is that I could only find a few animal studies and no human studies. However, for BBG there is a decent number of animal studies that prove efficacy in ATP-mediated pathologies; it was also used in the past as a dye to measure cardiac output in humans and it’s currently used as a stain in eye surgery in humans, plus there are some human in vivo studies showing no toxicity.

    BBG and RB-2 don’t antagonize IL-6 (as far as I understand), which is why they could provide valuable extra info when compared to Suramin and Tocilizumab.



    I’m linking some of the studies I found on BBG for reference (note BBG is also called Coomassie Blue):

    A small study on 2 human subjects who didn’t experience any serious complication after very high-dose IM injections of BBG: http://www.ahjonline.com/article/0002-8703(61)90638-X/pdf

    Another study on BBG toxicity that mentions a total of 120 patients and up to 2000mg doses with no toxicity encountered: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1017608/?page=3

    More for BBG: http://www.pnas.org/content/106/30/12489.full

    This study on BBG with fruit flies is used to approximate the toxicity potential of chronic exposure to waste products on the environments and humans which also doesn’t raise particular concerns: http://www.ou.edu/journals/dis/DIS93/Okamoto 40.pdf

    I think this evidence plus the fact that BBG is very similar to the common food dye F&D Blue N1 makes it very likely that at least BBG (if not RB-2) would be pretty benign, especially at lower doses.
     
    Last edited: Oct 13, 2017
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  7. nandixon

    nandixon Senior Member

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    @enduin, I like your ideas. I was going to suggest testing BBG as well. If BBG works in Ron’s testing device then it might even be administered in vivo, as you suggested. The obvious downside is that therapeutic dosing may turn a person's skin a bluish color, since it does so in mice. (I think a similar problem may actually have been why suramin was originally developed in the first place many years ago, i.e., to have a colorless analogue of its parent drug.) That skin color issue might be worth it for ME/CFS though depending on the needed frequency and length of treatment, etc, for BBG.
     
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  8. enduin

    enduin

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    Thanks! Actually as far as the skin discoloration goes with BBG, that might not even be an issue: in the papers I posted they explain that BBG was preferable as a dye over Evans Blue because it didn't cause a persistent skin discoloration, but instead "a transient blueing due to its presence in the peripheral circulation". They also mention that the patient's skin would return back to normal in 2-3h with moderate doses and 5-6h with very high doses. I think humans might be able to excrete BBG more efficiently than rats, plus it seems like even with the rats the blueing is dose-dependent.
     
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  9. dreampop

    dreampop Senior Member

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  10. adamjfpickering

    adamjfpickering

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    @melihtas

    Any luck getting a compounding pharmacy to produce the raw version? I was able to get some Suramin (Sodium Salt)
    from STEMCELL Technologies Inc, I don't have the guts to try it yet, but I also did find a way to get Suramin (Germanin) from a Japanese vendor.
     
    Last edited by a moderator: Oct 25, 2017
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  11. melihtas

    melihtas Senior Member

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    Istanbul Turkey
    We don't have compounding pharmacies here in Turkey. Also, I don't think they can synthesize molecules.

    I found some sources to buy Suramin but they are expensive and I have very tight budget. The cheapest suramin I have found so far is $354 for 500mg. I am trying to save enough money to buy 6 doses (6gr) before I order.

    What is the price for the product you bought? If you try it, you will be the first ME patient to do that.
     
  12. adamjfpickering

    adamjfpickering

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    Do you have PayPal? Perhaps I could fund you for the Suramin purchase. I purchased mine from a company in Vancouver BC, Canada it was 380 for 500mg it came very quickly.

    I’m just not sure what dosage to use, I do have a ND doctor who is willing to help perform the IV theatment but I currently don’t have the guts to go ahead.
     
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  13. Jesse2233

    Jesse2233 Senior Member

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    Southern California
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  14. adamjfpickering

    adamjfpickering

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    I don’t have access to the PM feature. You can text / call me if you wish.
     
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  15. PinkPanda

    PinkPanda Senior Member

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    I would be careful with trying Suramin before the trials are complete. Suramin backfired mightily in an AIDS trial and seemed to have impacted adrenal and liver function of the patients. Liver and adrenal function might be relevant in ME/CFS. So, although I get that people are desperate, the steps before a drug can be taken for a disease are there for a reason.
     
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  16. adamjfpickering

    adamjfpickering

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    This is very true. And the main reason why I am very apprehensive about going forward with treatment, there is only one other source I’ve heard from a homeopathic doctor located in Oregon who is currently treating children with ASD and seeing also good results so far. Based on this I think going low and slow with the treatment would be the best course with a MD or ND assisting.
     
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  17. junkcrap50

    junkcrap50 Senior Member

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    I thought this was an issue with dosing. Any Suramin for CDR Theory would be low dose. Tha'ts what Naviaux used in his autism trial.

    Also, I thought Suramin was given IV only.
     
    Tally likes this.
  18. RL_sparky

    RL_sparky Senior Member

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    California
     
  19. PinkPanda

    PinkPanda Senior Member

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    The AIDS trial was not low-dose, but I don't know if that was the only issue. Maybe you have a reference on that?
    I don't know what doses are usually used for sleeping sickness or cancer treatment in comparison.

    Yes, the autism trial was very low-dose, but that doesn't mean it's naturally safe for self-experimentation.
     
    Last edited: Oct 25, 2017
  20. pattismith

    pattismith Senior Member

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    It seems it is poorly absorbed from the gut:

    http://www.minclinic.ru/drugs/drugs_eng/G/Germanin.html

    Another problem could be that blood concentration vary alot from one to another

    https://academic.oup.com/trstmh/article-abstract/34/1/37/1917278/Concentration-of-Bayer-205-Germanin-in-human-blood?redirectedFrom=fulltext

    Other synonyms for Suramin:
    Fourneau 309,
    Bayer 205, Moranyl, Antrypol, Naphuride

    Some more synonyms and vendors:

    https://pubchem.ncbi.nlm.nih.gov/compound/Suramin_hexasodium#section=3D-Status
     
    Last edited: Oct 25, 2017

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