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

adamjfpickering

adamjfpickering

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12
@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.
 
dreamydays

dreamydays

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United Kingdom
Because of the risk of severe reactions, it is advisable to give an initial test dose of 100 to 200 mg (0.1 to 0.2 gram) in 2 mL of sterile water for injection before starting treatment. {02}{06}{10}{49} This test dose should be administered by slow intravenous injection. After injecting the first few microliters, wait at least 1 minute, then inject the next 0.5 mL over 30 seconds and wait one minute. Finally, inject the remainder of the dose over several minutes. Epinephrine (1:1000 solution), parenteral antihistamines, and corticosteroids should be available immediately to deal with any adverse reaction that may arise. {02} A patient who experiences an anaphylactic reaction after the first injection should never receive suramin again. {55}
Click to expand...

From drugs.com
 
necessary8

necessary8

Senior Member
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134
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.
 
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Jesse2233

Jesse2233

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Southern California
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
 
B

BLZIN

Messages
14
@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
 
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adamjfpickering

adamjfpickering

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12
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?
 
pibee

pibee

Senior Member
Messages
304
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:
 
B

BLZIN

Messages
14
Riben12 said:
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
Click to expand...

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

BLZIN

Messages
14
adamjfpickering said:
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.
Click to expand...
GREAT!!!!

adamjfpickering said:
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.
Click to expand...

I'm sorry, homeopathy is NOT science.

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

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.

adamjfpickering said:
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?
Click to expand...

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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