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

[rebar]

I can't find the study nanonug, it was a rather scattered search and its not coming up in history. It is a possible side effect, at this point I don't know how significant. I've run out of energy so I'm going to take a break. This came up immediately, https://puredca.com/questions/are-there-any-side-effects-of-dca-treatment/

 

[Daniel E.]

It's great that groups are looking at supplements, and other treatments like DCA. It's too bad that they felt the need to adjust the recipe mid trial.

Hopefully we see a better constructed, blinded study soon. One which uses objective markers. Surely with something like this which targets a specific metabolic process, we can correlate measurements of PDH activity to patient survey data.

Also, I find quotes like this dissapointing...



Something about this statement just seems rather dismissive, and suggestive that non-responders must be in some other category. I'm sure that some patients are likely in that boat, but something about the way it's written in the paper bothers me. "explaining the lack of response to nutriceutical treatment" as a statement is just cocky in the absense of a proper clinical trial with objective measure.

I think it is all good that they adjusted the recipe mid trial, I bet they just found other supplements that could help the whole experience.

Regarding the quote, I think study claims that you could divide people with ME/CFS in to two categories:

Category I. People who have ME/CFS and no other significant diseases such as multiple sclerosis, autoimmune diseases etc.

Category II. People who have ME/CFS and have other diseases simultaneously etc - multiple sclerosis, autoimmune diseases, disorders related to endocrinology.

It would be naive to believe that DCA could help people in Category II, because Multiple sclerosis requires a whole other treatment (it causes fatigue and paralysis as well as death and only recently pharma companies in Swiss have developed biological therapy which could be the FIRST drug to actually stop MS a little bit). Autoimmune diseases require a completely different treatment and could cause fatigue, depression and other changes similar to ME/CFS. Endocrinal ilnesses such as hypogonadism mean the decrease of testosterone, once again, DCA can no be particulary helpful in such cases.

However, according to the study, a big part of Category I patients received improvement which could be measured with objective methods. I believe that this could be huge. All they need to do i develop guidelines or some sort of tests which could be taken by people who have ME/CFS to find out if these nutriceuticals with DCA are for them.
For example, if patient A has early multiple sclerosis and hypothyroidism - DCA + Vit B, ALA etc. is probably not for him. But if Patient B is free of any other diseases which could aggreviate or result in ME/CFS symptoms - he should probably try DCA. I don't know, this just seem like a logical concept if they're planning to developing these ideas in the future.

We need as much attention from reputable people and researchers as we can get. This could be something interesting. We need more trials with bigger numbers.

Anyone know any professors that could participate in such findings ?
@msf what do you think ?

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P.S. Nearly forgot. DCA doses for treating cancer are 3 times, 4 times or sometimes even 8 times larger than the doses that they've used in this pilot trial. I think the lowest threshold for DCA to be able to cause any side effects is 7,5 mg/kg (some study mentioned it). If they do develop, all the side effects are reversible by quiting DCA intake. Besides, I believe the reason they added Vitamin B1, Alpha-lipoic acid and Carnitine was to compeltely minimize any possibility of side effects (don't ask me why these supplements improve the experience of taking DCA a LOT. I've just seen it from my personal experience. You must take a lil' bit of VitB1 and Alpha lipoic acid for the best experience).

Anddd... the study somebody mentioned before. Actually, I don't think i've read that anyone died from DCA, lol. Otherwise they would have stopped all the research with the DCA + children suffering from mitochondria diseases. I believe there was one study related to brain cancer was performed over 10 years ago, but then they gave HUGE doses of DCA with no supplements to prevent side effects. It was like taking a 5 times bigger dose than here, every day on a continuous basis.

 

[msf]

Well, I was hoping to hear that Prof. Davis is interested, but I guess Ben and Jaime are busy. I would have thought fluge and mella would be interested too, since they have already researched pdk stuff.

 

[Learner1]

Love your enthusiasm. Really. The trouble is, the FDA has banned it.

I followed up on this discussion with my doctor, noting my PDH blockade. He said we'd have a hard time getting DCA. Compounders are using up their old supplies and then won't be able to get more. I would then have to drive 100 miles to Canada to get it, or take my chances on the Internet where purveyors of fake DCA made of dextrose, lactose, etc. have already been found. I can't take my chances due to my allergies which could push me into anaphylaxis.

As I said, I've seen DCA used successfully in the IV clinics I've been in. My old doctor had a successful NIH glioblastoma trial with it and he was actually at the June 2016 FDA Compounding Committee Meeting, where the FDA experts recommended banning it, saying there were no successful cancer trials, which is not true. The FDA also ignored its successful use in mitochondrial disease.

See the attached for the FDA's view. The first two attachments include DCA.

The FDA is in the process of banning many compound substances I've depended on in my recovery, and that many patients aren't even aware of or haven't even tried. They're also looking to ban anything that can be made into a copy of an FDA drug. This is very disturbing nees, as many of us rely on compound hormones, steroids, antihistamines, chelators, and POTS treatments like pyridostigmine and propranolol. See the 3 attached documents - 2 discuss DMPS on the 503a list and the other lists everything on the review list of 503b bulk compounding substances.

Once I gather a little more info, I'll start a new thread on what actions we can take to bring ME/CFS patients' needs to the table for many of these substances. I'll post it here and hopefully a chorus of us can take action together.

 

[Daniel E.]

@Learner1, I've read all the attachments regarding FDA and DCA. Hmmm...
These look like they were discussing the possibility of making DCA available for cancer treatment in alternative medicine settings. Apparently, there are too little science papers on if it really could be a better alternative to conventional malignant disease treatment. One of the main reasons FDA didin't approve DCA.

However, it is possible that DCA and Vit B1, ALA mix could be registered in Europe as a food supplement because it is a naturally occuring substance in algae such as A. taxiformis. That makes the whole process of it becoming a legal, high quality nutriceutical more likely to happen.

This idea that DCA could possibly help a great bunch of people with CFS just needs more research from doctors/scientists and enthusiasm from the community.
If it gathers more facts that this is really a LEGIT idea, maybe they will launch a product which cointains DCA specifically for people with CFS. And make it available for anyone.

 

[Ben H]

Hey @JaimeS and @Ben H,

Do you know if Prof. Davies is aware of this trial, and do you know if he is interested in doing one himself? It would seem to be the kind of thing that would interest him.

I’ve sent this to Ron. It is indeed interesting (I remember Naviaux mentioning it) but the fact that it was combined with many other supplements that we know help some PWME make it difficult to attribute a result to DCA (though I realise why this was done) and the mechanism behind DCA and PDH with what Fluge and Mella have found is compelling.

Would have been nice to see objective measures too even though it was ‘proof of concept’.

I’d like to see it followed up or expanded on.


B

 

[jaybee00]

Any updates? Working for anyone?

Thanks

 

[raghav]

I tried DCA 500 mg (once in the morning) from DCA lab for 10 days along with vitamin B1 at 100 mg and ALA at 100 mg which I was already taking. I followed this for 10 days. I did not see any increase in energy levels or mental fatigue.

 

[Daniel E.]

That's a relatively short time, 10 days, @raghav. I've contacted a couple of people who are researching this
subject regarding DCA and ME/CFS and the result varies.

Some people start feeling an improvement in just 3 days, some feel improvement in 3 weeks, in some cases - people start feeling the improvement in a couple of months. There is also a portion of people who don't feel improvement at all (this was the group of people Prof. F. Comhaire was talking in his study. In the future a questionary could be developed which will enable people to get the answer if this supplement with DCA will help them or not).

Despite that, we need more studies... Are there any news from Davis or Naviaux regarding this research ? As I recall Ron was one of the researchers who pointed out the importance of mitochondria disfunction for ME/CFS...

 

[msf]

Ok, I've taken it for four days so far. The first two days there was some decrease in lactic acid, the third I had an ME attack ( I'm taking it in order to get some work done) and so tripled my dose, and today have recovered from the ME attack WHILST continuing to work. Today I will take the lactic acidosis dose of 25 mg/kg, or approximately 2000 mg in two doses. I found it surprising that the pilot trial used such a low dose (less than 10mg/kg, more like 6mg/kg for me!), and it is very encouraging that it still seemed to have an effect!

 

[nanonug]

FYI: Personalized Dosing of Dichloroacetate Using GSTZ1 Clinical Genotyping Assay

 

[Daniel E.]

@msf, be careful with the dosing. Try using schedules like 5 days on or 2 days off or 2 weeks on, 1 week off (to let the DCA flush out) for quantities over 1000 mg daily. People in the pilot trial have used 400 mg of DCA daily for 9 months afaik.

Are you taking Vitamin b1, alpha lipoic acid or l-carnitine togheter with DCA? ALA potentiates the effect of DCA (this means lower doses are more efficient), Vit B1 and L-Carnitine protect from side effect occurrence.
Let us know how it's going for you.

The pilot trial used 400 mg of DCA because with this dose people don't develop any side effects, even though it could take longer for the improvement to happen.

Regarding the dose variability among individuals all I know so far is that children and younger people metabolise DCA faster and tolerate it better. Also, as @nanonug mentioned above, a handful of individuals metabolise DCA slower than the rest of the populations, therefore they don't need to exceed the safe dose threshold.

 

[msf]

Yes, I was aware of all that, but I think the dosing schedule is a good suggestion - I'll probably try something like that. I am taking all the supplements you mentioned, plus coq10. I realise there might be some side effects at the dose I'm using, but I'm currently using it as a short term thing, so as long as they don't come in the next few weeks then it will be worth it. The alternative was letting ME cause me to fail my Master's, and I really don't want that to happen. Plus the nerve side effects aren't that scary to me, as I got something like polyradiculitis just from having ME (most likely from the Yersinia infection that triggered my ME).

 

[raghav]

I cannot tolerate l-carnitine. Causes severe heartburn and GI symptoms. So if I skip it what side effects are likely to happen ? Any other alternative to it ?

 

[Daniel E.]

You can skip L-Carnitine. It's the least important supplement for avoiding side effects from DCA.
The most important is Vitamin B1 (benfotiamine).

I'd like to remind people that 400 mg of DCA daily is a really small dose compared to 2000 mg of DCA that people take from other situations.

In Frank Comhaire's pilot trial people used 400 mg of DCA for up to 9 months and nothing bad happened afaik.

 

[neweimear]

I haven't read through thread...does anyone know how long it will take to get Frank's supplement to market?

 

[dreamydays]

DCA Labs will make it to order

 

[neweimear]

DCA Labs will make it to order

Is that just dca though, I am enquiring about the actual supplement Frank is trialling?

 

[dreamydays]

They have a section called our lab at the top with some details

We can offer Sodium Dichloroacetate in various forms and packages. We can supply Sodium Dichloroacetate with sodium phosphate additive that provides pH stability and prolongs shelf life. We can also produce other salts: Potassium Dichloroacetate, Magnesium Dichloroacetate. We can also offer other chemical compounds and food supplements - Thiamine, L-Carnitine, Alpha lipoic acid and other.

 

[dreamydays]

Best get if before any patents lol good luck