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

[dreamydays]

Ok brave people. In Montoyas new lecture he posits the use of the drug tofacitinib (Xeljanz). This is in relation to the general cytokine behavour found in severe patients. I have already found a supplier and its aviailable from India and Turkey at around £450 per month. I feel like this would be a short term treatment if I were to try it as I have been at all levels of ME, very mild to bebdound. So I feel if it pushed me up a level I would stop the treatment and try and sustain it. Does this drug fit in with anyones current thinking of the mechanism of our disease?

 

[imitate-past-reign]

Thanks for the update. Please start a new thread @dreamydays and I will answer your question there.

 

[Rachel Riggs]

@melihtas
@Sushi
@Tally
@Jesse2233
@halcyon

I thought you might be interested in Dr. Naviaux's opinion on the matter, so I asked him:

"It sounds like people are trying 1-2 mg doses by some kind of “injection”. This is 500-times below a therapeutic dose. A typical adult dose would by 500-1000 mg given intravenously over a 1 hour, slow infusion. It doesn't seem like anyone is talking about a real therapeutic dose."

 

[melihtas]

@melihtas
I thought you might be interested in Dr. Naviaux's opinion on the matter, so I asked him:

"It sounds like people are trying 1-2 mg doses by some kind of “injection”. This is 500-times below a therapeutic dose. A typical adult dose would by 500-1000 mg given intravenously over a 1 hour, slow infusion. It doesn't seem like anyone is talking about a real therapeutic dose."

Thanks for letting us know, however, I used 1000 mg injection twice, not 1 mg. As you can see in the photo, each container has 250 mg in it. I mixed 4 of them into the solution for each injection. That photo was taken after the first injection. Suramin from empty bottles was circulating in my body at the time.

I don't think it is a good idea to bother researchers with information about uncontrolled personal trials which doesn't prove anything. I think suramin may work for a subgroup like rituximab does. We need a proper trial to see its effectiveness.

 

[necessary8]

"It sounds like people are trying 1-2 mg doses by some kind of “injection”. This is 500-times below a therapeutic dose. A typical adult dose would by 500-1000 mg given intravenously over a 1 hour, slow infusion. It doesn't seem like anyone is talking about a real therapeutic dose."

Please tell him that the people who tried suramin literally copied his own protocol from the autism trial - they took 1000mg intrevenously over half an hour. At least @melihtas did. Idk about others.

I've heard Naviaux say at one point that patients shouldnt be trying new drugs themselves, that its not only useless but counterproductive. I'm very curious why he thinks that, because he never explained it.

 

[JES]

Well it's impossible to say much based on an N of 1 experiment, we would need at least around 10 people to test it to reach any kind of conclusion and that seems kind of difficult given the status and availability of the drug. The treatments that work for CFS/ME usually work for a subgroup.

 

[necessary8]

@melihtas I have a question for you. Do you have POTS or orthostatic intolerance or vasovagal syndrome (any dysautonomia, basically)?

Also, how much do you weigh?

@adamjfpickering do you know if the other two people who tried suramin had any of those? POTS or orthostatic intolerance or vasovagal syndrome? (yes I also want to know about the one who didnt have ME/CFS in the end)

 

[melihtas]

@melihtas I have a question for you. Do you have POTS or orthostatic intolerance or vasovagal syndrome (any dysautonomia, basically)?

Also, how much do you weigh?

I don't have POTS. I do have a very bad orthostatic intolerance. Standing 30 minutes or sitting 1 hour in a day gives me PEM for a week. I spend almost all my day lying down.

I also have body temperature regulation problems, night sweats and IBS with diarrhoea. These are also autonomic dysfunctions.

My weight is 85 kg, height 183 cm.

 

[Tally]

I thought you might be interested in Dr. Naviaux's opinion on the matter, so I asked him:

"It sounds like people are trying 1-2 mg doses by some kind of “injection”. This is 500-times below a therapeutic dose. A typical adult dose would by 500-1000 mg given intravenously over a 1 hour, slow infusion. It doesn't seem like anyone is talking about a real therapeutic dose."

Are you sure you relayed it to Dr. Naviaux correctly?

I mixed 1gr suramin with 100ml isotonic water (sodium chloride 0.9%) and administered it as an infusion (drips) over 30 minutes.

 

[raghav]

@Rachel Riggs Does Dr. Naviaux have any other molecule as backup to suramin in case suramin does not do the trick in ME /CFS patients. Because otherwise it will be a longer wait than what it is already. Most of us are on the verge of physical as well as financial breakdown / meltdown.

 

[Tally]

Does Dr. Naviaux have any other molecule as backup to suramin in case suramin does not do the trick in ME /CFS patients. Because otherwise it will be a longer wait than what it is already. Most of us are on the verge of physical as well as financial breakdown / meltdown.

I think Dr. Naviaux said Suramin is the only purigenic drug available right now.

But Dr. Davis is planning several quick and small pilot drug trials this year. Hang in there.

 

[Lemnia]

Has anyone watched this video

where Dr. Klinghardt speaks on Suramin ? The entire speach is well worth watching but if you don't have the time start at 30 minutes into the video where he speaks in depth of Suramin. He also then mentions that they have now produced a homeopathic version of Suramin with comparable favourable results. Has anyone tried this ?? I contacted the clinic in Germany affiliated / following Dr. Klinghardt's protocol and they use it there.
Has there been any updates / news on further testing by Dr.Naviaux with Suramin ?

 

[Tally]

they have now produced a homeopathic version of Suramin

So have I. Comes right out of my kitchen tap. Bathroom too, I guess.

 

[frozenborderline]

I don't believe in "homeopathy" but there are threads on PR about other substances, some plant-derived, that are purinergic antagonists like suramin

 

[Learner1]

Klinghardt is a local doctor here. He is on the bleeding edge of ideas and treatments, but he has definitely helped people who weren't helped anywhere else. I definitely wouldn't follow him blindly, but he has some interesting ideas and offers many valid therapies.

As with any doctor, it's important to ask questions and understand what the treatment being proposed is likely to do for you. In this case, I'm not a fan of homeopathy and in talking with Dr. Naviaux, it's more than just suramin.

 

[raghav]

@Lemnia Thanks for posting the video. Can you tell me where we can get the homeopathic suramin ?

 

[Tally]

Can you tell me where we can get the homeopathic suramin ?

It seems I wasn't clear the first time around. There is no such thing as homeopathic suramin. It's water. They are charging you a lot of money for water. It's nothing but water in there.

"homeopathic remedies consist of substances that have been diluted many times in water until there is none or almost none of the original substance left.”

I know in our desperate state it may seem like "what's the harm in trying", but there is harm:

From BMJ Editorial:

ethical issue with homeopathy is that it can involve deceiving the patient; indeed, if the only effect is placebo, it is probable that deception is essential to the practice of homeopathy.

If a patient is told that he is being given a placebo, the placebo effect will probably be lost; homeopaths tend to avoid this issue by explaining the ‘scientific basis’ of the treatment and saying that it has ‘worked’ for other people. This is perhaps being economical with the truth rather than outright deception, but the primacy of the principle of respect for autonomy and informed consent in modern medicine demand more complete disclosure of information.

In order to meet these standards, homeopaths would have to be entirely transparent about the evidence base for any treatment—and doing so might well negate any effectiveness.

...the central deception of the efficacy of homeopathic dilution is essentially unethical.

Better to save your money. Or give it to reserachers who are working on curing ME.

 

[sb4]

@Tally I understand your position but I don't put so much faith in mainstream scientific opinion being correct. I think there is too much bad science, ego, bias, financial incentive, etc in our current scientific method and this has lead to, in my opinion (based on my experiences and limited knowledge accumulated), many false conclusions.

I think Gerald Pollack, Gilbert Ling, and Albert Szent-Gyorgyi are more right about water than current mainstream theory. And if they are right, everything we "know" about water will come into question.

Of course this doesn't mean homeopathy works, or that everyone selling homeopathy is honest, but if I had to guess I would err on the side of it working under specific circumstances.

 

[Tally]

I don't put so much faith in mainstream scientific opinion

And you shouldn't. There is no room for opinion in science.

On the other hand, it has never happened that a fact reached by a proper scientific method has been wrong. This is a common misconception.

We think because PACE trial happened that science can't be trusted, but the real issue is that PACE ISN'T science. Subjective measures, outcome switching, unblinded trial... that goes against every rule of how to conduct proper science.

You can't have that in physics and chemistry. Molecules can't be manipulated to fill out questionnaires wrong.

For example, Einstein changed the way we think about the Universe, but an he didn't contradict Newton. He built upon it. Newton is still right.

And water still doesn't have memory.

are more right about water than current mainstream theory. And if they are right, everything we "know" about water will come into question.

I pee into water you drink. I sure hope scientists are right, not homepaths. Just sayin'

 

[sb4]

On the other hand, it has never happened that a fact reached by a proper scientific method has been wrong. This is a common misconception.

For example, Einstein changed the way we think about the Universe, but an he didn't contradict Newton. He built upon it. Newton is still right.

I really don't think this is right at all unless you use an ultra strict definition of the scientific method. Stomach ulcers where thought to be caused by stress until it was proven wrong. Smoking was good for you until it was proven wrong.

I also am not sure you are right about the Einstein newton thing. Didn't Newton think things happened instantaneously, and Einstein proved they didn't. Meaning newton was wrong, his theory was accurate enough for simple things but wrong for complicated/precise things. Also it could well be that einstein was wrong, wasn't he in denile about spooky action at a distance?

I pee into water you drink. I sure hope scientists are right, not homepaths. Just sayin'

Unfortunately this isn't a good argument. I said in my last post it could work under specific circumstances. If this alternate theory on water is right then water is structuring and breaking all the time, meaning some of the contents of your pee would be structuring / creating charge flows then breaking soon after. So by the time someone gets the water out of the tap, the "memory" of your pee is long gone.