Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

[J.G]

Yes. If you examine Ron Davis and Naviaux research you will see that they somehow support the idea that some of the ME/CSF cases could be related to mitochondrial disfunction and Sodium dichloroacetate mainly affects the mitochondria. It sort of "revives" them and enables adequate energy production again.

I wonder about the fringe conditions here. Under what circumstances can DCA temporarily "override" the wrongly flicked metabolic switch? (For I don't think it flicks the switch back, because that would be a permanent cure - unless, of course, some process then ends up flicking it back again.) Does it work where the cause is epigenetic? Where autoantibodies are at play? Where the cause is a positive feedback loop, metabolic or otherwise? Where there are sufficiently sequestered resources to break out of the "altered state" when the switch is overridden? And what if there are not?

I personally can override the metabolic bottleneck with a freezing cold shower, but the "hey I feel much better"-effect only lasts for about 45mins and still gives me bad PEM on exertion, presumably because I still rely on lactate-producing glycolysis for energy, just a higher rate of it. (Cold exposure increases the metabolic rate through a process called cold thermogenesis, if I understand it correctly.) I wonder if DCA would do anything for me. I'm terrified to try, though. If I get any worse, my life will be over entirely.

 

[Daniel E.]

As far as I know DCA has been patented by various scientists dozens of times and it didin't have any restrictions or problems for other scientists or people for its usage. (check the internet)

Patents also give some tax reductions and other bonuses in some countries if one decides to make it in to a product and produce it in larger quantities. You can also get funding from your country or some organisations more easily.

I don't believe that they patented it for the sake of restricting it from all the people in the world or other scientists. That would be idiotic. However, it's quite understandable that one would like to patent such a discovery because the potential partners (companies looking for profit) would take it more seriously and might be able to invest money in this discovery for further research.

It would be silly to believe that a random scientist in the middle of Europe has the money and the time to buy all the products on his own, to make them in to pills, distribute the pills among other doctors and ask them to spend years prescribing the random substance to patents and later ask all of them if it works (that's what a basic clinical trial would require).

This process is difficult and requires time and nerve consuming document registration, man power and material fees. Basically - you need money for all of this.

Remember, clinical trials happen mainly for two reasons - genuine interest or money (the later is more frequent).

And to make a clinical trial - one must spend money and time. To get money you need either charity (which is quite frequent in the field of CFS) or someone to invest it for sake to regain the money.

I personally don't believe that the patent in this case provides a big issue. This substance is available for everyone. You can go buy it on internet and do whatever the hell you want with it: research it with CFS patents, use it and try it for yourself etc. If this got more attention - it could be research by other scientists with no prob I believe.

Remember: it takes aprox. 1 billion dollars of investment to develop a legit drug which could be used by those, who need it.

 

[Daniel E.]

I wonder about the fringe conditions here. Under what circumstances can DCA temporarily "override" the wrongly flicked metabolic switch? (For I don't think it flicks the switch back, because that would be a permanent cure - unless, of course, some process then ends up flicking it back again.) Does it work where the cause is epigenetic? Where autoantibodies are at play? Where the cause is a positive feedback loop, metabolic or otherwise? Where there are sufficiently sequestered resources to break out of the "altered state" when the switch is overridden? And what if there are not?

I personally can override the metabolic bottleneck with a freezing cold shower, but the "hey I feel much better"-effect only lasts for about 45mins and still gives me bad PEM on exertion, presumably because I still rely on lactate-producing glycolysis, just a higher rate of it. (Cold exposure increases the metabolic rate through a process called cold thermogenesis, if I understand it correctly.) I wonder if DCA would do anything for me. I'm terrified to try, though. If I get any worse, my life will be over entirely.

That's why this discovery needs the attention of people like Ron Davis. Afaik, he has the resources and materials to find out these answers on a molecular level. The original study has given just a brief overview how this whole thing could work and tbh it looks like it all can be tested relatively simply with the help of bigger scientists in USA.

Regarding the dangers of DCA, heck, I know a couple of people who tried it themselves. It doesn't cause permanent damage, however, one must be careful not to overdo it for longer periods of time (like someone who tried 2 g/day, which is 4 - 5x times the bigger dose than the original article recommended ) ). The sad thing is, that if you take 500 mg a day it could take more than a month for something to happen. These are little and safe doses - remember it. But these are safe doses.
It would be probably best if this got more attention and had official guidelines developed by doctors on how and when one should take dca for the best effect.
So far what I've learned is that:
-One shouldn't exceed 500 mg (or 6,25 - 12,5mg/kg doses) because anything larger surpasses the safe threshold and might increase the risk of temporary neuropathy to happen (tongue getting numb, tingly fingers etc),
-One should use ALA, Vitamin B1 and other supplements with it. This is mandatory. Browse the thread or the internet for more info on this.
-One should do some kind of pattern. Etc. take DCA every 5 days and do a 2 day break. This allows DCA to be flushed out without being accumulated. However, as far as I understood the patents have been taking DCA constantly for months in this study. The trick is - that they didin't rush it or overexceed 500 mg?
-@msf is the champ here. He has tried it himself, I don't believe that anyone can explain these things better than him from a first hand experience.

 

[J.G]

And to make a clinical trial - one must spend money and time. To get money you need either charity (which is quite frequent in the field of CFS) or someone to invest it for sake to regain the money.

Okay, so if I read your post correctly, the patent application is most likely for the purpose of securing funding / support for a "DCA for ME/CFS" clinical trial that would otherwise - bar a major donation - be cost-prohibitive to set up. Got it.

 

[Murph]

That's a good point. Yet as a political scientist the notion of patenting an idea - using DCA to treat ME/CFS - is totally foreign to me. Wouldn't it be nice if I could own the democratic peace theory, and charge everyone for citing, quoting, or otherwise invoking it.

I just don't see why DCA for ME/CFS needs a patent of any kind by anyone, small fry or megacorp. If there were a significant financial outlay to "discover" and synthesise DCA, sure. (But then you'd be patenting DCA itself.) A new way of administering DCA directly to, by way of example, mitochondria using a novel piece of technology? Okay, I can see that. But merely the idea of using DCA for ME, I don't understand that. If there's an angle I'm not seeing, I'm happy to hear about it, of course.

No you're right, the extension of patents from being only on phsyical inventions to also on newly invented processes is highly disputed and possibly bad. Amazon patented one click shopping for example, and now everyone else has to make sure they have two clicks.
https://www.economist.com/leaders/2015/08/08/time-to-fix-patents

 

[msf]

That's why this discovery needs the attention of people like Ron Davis. Afaik, he has the resources and materials to find out these answers on a molecular level. The original study has given just a brief overview how this whole thing could work and tbh it looks like it all can be tested relatively simply with the help of bigger scientists in USA.

Regarding the dangers of DCA, heck, I know a couple of people who tried it themselves. It doesn't cause permanent damage, however, one must be careful not to overdo it for longer periods of time (like someone who tried 2 g/day, which is 4 - 5x times the bigger dose than the original article recommended ) ). The sad thing is, that if you take 500 mg a day it could take more than a month for something to happen. These are little and safe doses - remember it. But these are safe doses.
It would be probably best if this got more attention and had official guidelines developed by doctors on how and when one should take dca for the best effect.
So far what I've learned is that:
-One shouldn't exceed 500 mg (or 6,25 - 12,5mg/kg doses) because anything larger surpasses the safe threshold and might increase the risk of temporary neuropathy to happen (tongue getting numb, tingly fingers etc),
-One should use ALA, Vitamin B1 and other supplements with it. This is mandatory. Browse the thread or the internet for more info on this.
-One should do some kind of pattern. Etc. take DCA every 5 days and do a 2 day break. This allows DCA to be flushed out without being accumulated. However, as far as I understood the patents have been taking DCA constantly for months in this study. The trick is - that they didin't rush it or overexceed 500 mg?
-@msf is the champ here. He has tried it himself, I don't believe that anyone can explain these things better than him from a first hand experience.

I´m flattered - I don´t generally rush into trying new treatments, but I thought this would have a good chance of letting me finish my MA, and it did. The peripheral neuropathy was a function of this need and my own stupidity/curiousity.

Do you know if there is an scientific evidence for the safeness of the 5/2 dosing? I have just found some positive reports from those taking that dose for cancer. One cancer study I read showed that it took 5-10 days to get rid of DCA in the blood, but the patients had been taking it for around a month, if I recall. So your claim seems plausible, depending on dose, genetics and age.

 

[Learner1]

In cancer treatment and diabetes, peripheral neuropathy happens due to damage to mitochondria. (My chemo-induced neuropathy was reduced by taking NAC and glutathione.)

Does anyone know what is causing it with DCA supplementation?

 

[Chris]

Just a comment on this patent business--I am pretty sure that the patent he has applied for is for the particular mix of things that he got a compounding pharmacy to produce for his use--the DCA plus the ALA and B1 and so on. I read somewhere that DCA was not patentable--but I can't remember where!

 

[Daniel E.]

I´m flattered - I don´t generally rush into trying new treatments, but I thought this would have a good chance of letting me finish my MA, and it did. The peripheral neuropathy was a function of this need and my own stupidity/curiousity.

Do you know if there is an scientific evidence for the safeness of the 5/2 dosing? I have just found some positive reports from those taking that dose for cancer. One cancer study I read showed that it took 5-10 days to get rid of DCA in the blood, but the patients had been taking it for around a month, if I recall. So your claim seems plausible, depending on dose, genetics and age.

Haha, my man. Glad it helped you, mate.

Regarding the scientific evidence, yes. I only know one legit article on that subject:
http://exp-oncology.com.ua/article/8522
Damn. I've read it more closely and it seems that they're talking about 2 weeks on, 1 week off DCA which wouldn't be such a great choice in the case of CFS. Although, there is much more scientific literature that can help develop the understanding of which scheduling method (afaik the most popular are - 5 days on, 2 days off and 2 weeks on, 1 week off).

There is infact evidence in the use of DCA. Maybe we need to dig in the old articles about pharmacokinetics and use for children mitochondrial lactic acidosis.

 

[Moof]

I too wouldn't read much into the fact the doctor who did this early research is talking about a patent. Drs Fluge and Mella publicly stated their intention to file a patent on using Rituximab to treat ME when they did their early, successful trials; they'll likely have reviewed that decision now in light of the outcome of Phase III, but I think the patent statement may be pretty standard when it comes to promising-looking treatments for difficult conditions.

I don't usually experiment with supplements and so on, but in an uncharacteristically impulsive moment I ordered some DCA from a UK supplier. I tried putting a concentrated solution on my skin overnight first, then taking very small amounts to make sure I wasn't allergic to it. All fine, so I tried a larger dose of approximately 400mg. It cleared my brain fog so hard that I actually got a bit of a headache, and the energy increase is very marked. A two-day trial is entirely meaningless in ME terms, but so far it's looking positive. I'm planning to take it for a couple of weeks, increasing my activity levels a bit if the energy boost continues, and see if it makes my symptoms flare up. Fingers crossed...

 

[Chris]

@Daniel E.--thanks for the paper--but note that these were rats, not us, the target was cancer and not ME, and that the doses were very high--1g/kg would mean I would have to take about 63g, not a measly 333 or 500mg! In practice, I found a distinct improvement for about 5-6 days at alternating 333 and 500, and then a moderate crash of energy. So I will continue a 5/2 schedule and see if it really helps, or modify in a variety of ways. And wait for more info--and it would be great if the real researchers, like Ron Davis and Robert Naviaux, would send a comment--please! I gather they do know of the paper.

 

[Chris]

I may have made an interesting discovery. I also have a Vielight Neuro Alpha, and have recently been using it daily. Simultaneously I have taken a break from my DCA, and have been losing the benefits I felt I had been gaining. In reading Naviaux' 2015 paper on using Suramin on mice used to model ADS, I came across this: "Interestingly, many of the neuroprotective and anti-inflammatory effects of minocycline have been traced to its actions on mitochondrial function..and may also act to decrease hyperpurinergia by moderating mitochondrial ATP synthesis." I have not used minocycline, but extra-cellular ATP is one of the key purinergic signaling molecules aimed at by Suramin and other anti-purinergic drugs like DCA, and an increase in ATP is one of the claimed benefits of using LLLT as in the Neuro. So I wonder if the two interventions are working at cross-purposes--so I shall quite using the Neuro while taking DCA and see if that helps. I am taking a short break right now, but will report again after restarting DCA without the Neuro in a couple of days.

 

[Moof]

Interesting. I'm still getting gains – in fact, I've been wondering about the difficulty of blinding any trial of sodium DCA, if it has the effect on others that it does on me. I quite definitely know I'm taking it, even at small doses, the effect is so obvious. What I won't know for probably a couple months is how it affects my wellbeing generally. Is it like taking a mild stimulant, where the energy created is only borrowed from tomorrow (and therefore I'll crash), or is it genuinely creating new energy without any real cost attached; and if it's the latter, will my ME body find a way to circumvent that process given enough time!

 

[M Paine]

That would be a very long history! One day I might I might compile a list of all the self-experiments I have performed, and their outcome, good, bad or disastrous.

The most disastrous medical self-experiment I ever performed actually led to me getting ME/CFS, and you can't get much more disastrous than that!

Sounds like an interesting story on both counts... particularly what you thought led you to get ME/CFS, and what/why you were experimenting to start with. If you ever do start a thread, I'm sure it would be an interesting read.

 

[M Paine]

Interesting. I'm still getting gains – in fact, I've been wondering about the difficulty of blinding any trial of sodium DCA, if it has the effect on others that it does on me.

I'm not quite sure what you mean here, the outcome of a double blinded trial isn't affected by patients who have an obvious response. So long as they aren't sure, and their practitioner isn't sure which arm of the study they belong to, then it's anyone's guess what that response was caused by. Even if you have an inclination that you are on the experimental arm of a study, it doesn't impact the outcome of the study. Or did I misinterpret what you meant?

 

[Hip]

Sounds like an interesting story on both counts... particularly what you thought led you to get ME/CFS, and what/why you were experimenting to start with.

It's actually a short story:

The virus I caught caused a chronic sore throat, with constant inflammation; after around 18 months with this symptom, I read an article about magnet therapy reducing inflammation. Normally weak magnets are used, but I happened to have a very powerful neodymium permanent magnetic, with a surface flux of around 0.5 tesla.

So I just as an experiment, I held this neodymium magnetic to my neck for some minutes, around the throat area, to see if it might reduce throat inflammation. I did not notice much.

About half an hour later, I went for my daily run, and halfway through the run, a felt something horrible happening in my brain and in my mind as well, which turned out to be a viral brain infection (meningitis and/or encephalitis). As a result, I suffered from some mild brain damage, which changed my mental makeup to some degree, and this brain infection also led to ME/CFS. I cannot be certain, but I suspect that applying this magnet to my virally-infected throat may have somehow allowed the infection to get into the brain, triggering ME/CFS.

So there you go, the seemingly innocuous experiment of putting a magnet to my throat may have led to the development of a life changing disease!

 

[M Paine]

I don't know what I was expecting, but a powerful magnet probably wasn't on the list... don't they use MRI scanners at over ten times that strength? Quite often on the brain specifically? Food for thought I guess.

 

[Hip]

I don't know what I was expecting, but a powerful magnet probably wasn't on the list... don't they use MRI scanners at over ten times that strength? Quite often on the brain specifically? Food for thought I guess.

Yes, MRI scanners were the point of reference I considered, and as you say, they generate fields of several tesla. So that would suggest my neo magnet might not be the culprit. On the other hand, I think MRI scanners create a fairly uniform field, whereas a small magnet like mine would create a localized and non-uniform field. Whether that might make a difference, I don't know.

The virus I had (most likely coxsackievirus B4) was both virulent and chronic. When I first caught it, it was just a chronic sore throat, but a month later it spread to my nose, and then my lungs, then a month later my stomach, and the later my intestines. So this virus did have a habit of "annexing territory" in my body, by jumping into further organs. But after 18 months with the virus, the infection seemed to stabilize, and was not infecting any new organs.

But within an hour of applying the neo magnet, which is thought to have anti-inflammatory (ie, immunosuppressive) effects, the virus managed to annex my brain as its latest territory.

 

[msf]

In cancer treatment and diabetes, peripheral neuropathy happens due to damage to mitochondria. (My chemo-induced neuropathy was reduced by taking NAC and glutathione.)

Does anyone know what is causing it with DCA supplementation?

According to one of the papers I posted on here, it is caused by increased production of free radicals. I am still having problems with the peripheral neuropathy, so I advise everyone to follow Daniel. E´s advice about dosing. If you do get it, things that help are arginine (takes away the pain) and moderate amounts of alcohol (both vasodilators), things that don´t help are lots of alcohol (a vasoconstrictor) and more DCA! Anyway, as someone who got the not so bad version of ME (it still really sucked the first few years), I dont mind having numb extremities (not that one!) so much if I can serve as both an encouraging and at the same time cautionary tale for people.

 

[Learner1]

My old doctor developed a protocol combining DCA with ALA for cancer treatment, with some good results.

As a cancer survivor, I learned thst neuropathy is a dign of mitochondrial damage. It's more than just numb extremities...my mitochondria have been damaged by excessive oxidative stress, and its tsking lipid replenishment, carnitine, riboflavin, manganese, and large doses of antioxidants to try to repair the damage.

Caution is definitely indicated...