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How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

Discussion in 'Advocacy Projects' started by Jesse2233, Aug 12, 2017.

  1. dreamydays

    dreamydays

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    The thread with @StrayCat and the effect on PDH and TCA metabolites.
     
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  2. adamjfpickering

    adamjfpickering

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    @dreamydays

    I'll forward this to the persons taking the drug. i.e. having access to epi-pen, antihistamines and prednisone.

    I am particularly concerned because if something goes wrong also… apparently you can’t get rid of it from your body fast:
    • “Suramin is approximately 99-98% protein bound in the serum and has a half-life of 41–78 days average of 50 days ; “
    • “The mechanism of action for suramin is unclear”
    The persons taking the drug will do everything to reduce the risks of taking the drug and are using the services of at least a nurse or doctor.
     
  3. dreamydays

    dreamydays

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    Yes, the half-life is very long, however the cascade of reactions from inhibiting the CDR will take time to happen and there is the possibility of one dose being all that is needed.
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    One might even try starting with half of Naviaux's autism dose just to make sure there wasn't a severe allergic reaction
     
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  5. dreamydays

    dreamydays

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    From drugs.com
     
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  6. necessary8

    necessary8

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    I won't say "don't do this", because that decision is up to every individual, but I will say remember that any outcome is possible. It might cure you, it might do nothing, but it can also make you worse. We don't know how ME/CFS works, and the theories about purineric signaling are in the end just speculations at the moment. They fit nicely to a lot of observations, but that doesn't mean they can't be false.

    Others have already said it, but yeah make all the safety precautions you can when you're gonna try something like this. Most importantly, do the very small test dose first, this is standard procedure when administering suramin, even for sleeping sickness. Also if it was me doing this, I would copy Naviaux's protocol for autism exactly, because there is a lot to consider in terms of concentrations, not just the overall dosage.

    And keep us posted how it goes.
     
    Last edited: Nov 7, 2017
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  7. Jesse2233

    Jesse2233 Senior Member

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    Good points @necessary8

    Wanted to add that even though Dr Naviaux has explicitly asked people not to try suramin at home, if people do try it (after careful consideration, precaution, and physician oversight) it would be interesting to know certain objective before and after metrics such as...
    • CMP / CBC
    • ESR / CRP / ANA
    • Organic Urine Acids
    • Blood Amino Acids
    • Pathogen antibodies (Coxsackie B / EBV / HHV / Mycoplasma / Borrelia etc)
    • Cytokines

    • Steps per day
    • Hours of sleep
    • Orthostatic measures
     
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  8. Aroa

    Aroa

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  9. BLZIN

    BLZIN

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    @adamjfpression, I think they should use the recommended dose that is 20mg/kg. 1g is an amount less than the need of an average-weight adult. 1g is maximum daily quantity, right? For someone over 50kg, the dose should be administered within 2 days.

    I hope the 2 people who will try the reagent are aware of the correct manipulation (filter sterilization etc) and the risks involved (
    pyrogenic reaction for example). An animal test would be ideal.

    For people who will use the research suramin, I advise the following:

    Use scales of precision with proper accuracy. It is also interesting that the weighing/dilution container is as clean as possible. I suggest using Stericup
    or small sterile disposable petri dish. In this container suramin must be dissolved with sterile saline. Remember that this solution produced will not be sterile (because the suramin powder is not sterile ), however the use of Stericup/petri dish and sterile saline are important to mainly mitigate the presence of pyrogens.

    The solution should be aspirated with a syringe and needle.
    This needle allows the residual amount to be withdrawn. The volume should be completed to the desired amount (10ml for example). The needle must be discarded, becose it contaminated with the solution. With a sterile disposable syringe filter (ptfe or other membrane; 0.2um or 0.1um) the solution will be filter sterilized. With another sterile needle, the solution can be used directly or stored in [Depyrogenated] Sterile Empty Vials. Watch the video:


    @dreamydays, the test dose of Dr Naviaux was lower, only 50mg in 5ml. I would do several test doses, even smaller ones, especially for those who will use rearch suramin.

    NAVIAUX PROTOCOL

    RECONSTITUTED SOLUTION (10%)

    10% = 10g/100ml = 1g/10ml = 0,1g/ml = 100mg/ml


    TEST DOSE

    0,5ml reconstituted solution (50 mg suramin) in 5ml saline (50mg/5ml = 10mg/ml) only given by slow intravenous (IV) push over 3 min, followed by a 10mL flush of saline. Apparently went directly into the vein.


    REAL DOSE (50mg/Kg - 50mg OF TEST DOSE; DILUTION ≤1g/50ml [=20mg/ml])

    For exemple. Person with 40 Kg

    40 x 20 – 50 = 750mg/50ml was given over 30 min, followed by a 10mL flush of saline. Certainly a saline bag was used (50ml).

    * corretion
    * add information
     
    Last edited: Nov 13, 2017
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  10. adamjfpickering

    adamjfpickering

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    Hi @BLZIN Are you looking to try Suramin?

    Thanks for your detailed explanation.
     
  11. Riben12

    Riben12

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    Hi, i am interested in trying this out. My reason is not for cfs, but rather for autism. I tried to pm you but i don't know how. If you could start a conversation with me so i can get more information. Thank you
     
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  12. adamjfpickering

    adamjfpickering

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    General Update:

    For those of you following the Dr. Robert Naviaux research on The Cell Danger Response, autism and the drug Suramin, It’s been heard that recently private funding showed up that will extend the research for several months. Additionally, As many maybe already aware a homeopathic version of Suramin has been created with promising results, and will be available in the coming weeks.

    I still have a lot of questions such as:

    In regards to ME/CFS - The question that should be asked is not what causes the CDR, but what prevents it from receding?

    Suramin just limits the cellular stress signal translation, which is inflammation. With the next viral 'epidemic', what if these ME/CFS patients get infected and the brain doesnt sense it and all of the suramin patients will have their brains eaten?
     
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  13. BLZIN

    BLZIN

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    Yeh! u are welcome!
     
  14. pibee

    pibee

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    Wow, I am very excited about 2 persons who will try Suramin!

    Hope we get full detailed reviews soon!

    Good luck to them!:angel::thumbsup:
     
  15. BLZIN

    BLZIN

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    Click on the user, and then click on " Start a Conversation".
     
  16. BLZIN

    BLZIN

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    GREAT!!!!

    I'm sorry, homeopathy is NOT science.

    Good question. I believe the researchers are still looking for an answer. I hope that some doses of antipurinergic like suramina can fix this dysfunction.

    I think these are some concerns. Blocking purinergic signaling with suramin may worsen an existing occult infection or a future infection.
     
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  17. Riben12

    Riben12

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    Thanks, i talked to a mod and he said i have to post more before i have private conversations privilages. Hopefully i get them soon.
     
  18. BLZIN

    BLZIN

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    ;)
     
  19. BLZIN

    BLZIN

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    @Jesse2233 Where do I find this information?
     
  20. Jesse2233

    Jesse2233 Senior Member

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    Dr Davis mentioned it at the IiME Conference and Stanford Symposium
     

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