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

aquariusgirl

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I wonder if anyone's doc will reach out to this doctor in Ghent for advice?

Ugh, I wish we could get the specialists here in the US...Klimas, Bateman, Peterson, etc... to consider this.
 
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Runner5

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Oh sorry, I was looking not to make a new thread about salt if it had already been discussed since the video and this thread cites the same study and mentions DCA. There was some overlap. I'll post it in a thread. I apologize.
 
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Hip! Thanks for the good info.
I found a whole page dedicated to DCA.It mainly has information on SodiumDCA and cancer research, treatment. However, there is http://www.dcaguide.org/dca-information. It has some articles on what supplements you should add: http://www.dcaguide.org/methods-and-supplements-for-preventing-dca-side-effects
As far as I understand, If you take DCA with Vitamin B1 (great for nervous system health), Alpha lipoic acid and L-Carnitine, you can minimize the side effects or even experience no discomfort at all.

400mg is a really small dose compared with the ordinary ~1850 mg daily dose that the people are using for years in their treatment protocols for various illnesses such as cancer or congenital mitochondrial defects.
I also found an official abstract by Canada on DCA - http://www.oicc.ca/uploads/dca-health-professional.pdf
Apparently, it looks like they have been using DCA for treating children for like 40 years! Lots of studies on safety have been ongoing for decades. The dose for children and their genetical diseases is mostly 12,5 mg/kg (which is like on average 600 mg). So if children can tolerate 600 mg of dca daily for months or even years, I think 400mg of DCA for treating ME/CFS is a really safe dose. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3777225/)

Looking forward on more information on this subject. This recent study by this Belgium professor is mind blowing. Certaintly better than antidepresants, non-steroids, antibiotics or other stuff that the doctors are currently armed with

Anyone trying / tried this besides the people Hip mentioned ?
 
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Woke up this morning and gave it a second thought.
I believe that this could be something more in the future. We just have to wait.
I've read the study the second time and it looks that this theoretically could improve
the being of at least a half of people with ME/CFS. It depends on this important factor below.

As far as I understood this is less likely to work for people with other illnesses. Read on:

,,Among the non-responders several organic diseases were detected, including among others, severe osteoporosis due to hyperparathyroidism, late onset hypogonadism (LOH), a neuro-endocrine tumour, early stage multiple sclerosis, and autoimmune limbic encephalitis. In these patients the ME/CFS complaints should be classified as secondary [2], explaining the lack of response to nutriceutical treatment."

What I like about this is the last sentence:

"Since the nutriceutical continued being effective and devoid of adverse effects over an observation period of up to 9 months, it may safely be applied, possibly as an add-on treatment."
 

raghav

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I have been taking DCA 500 mg twice from monday. I have also added Vitamin B1 100 mg and ALA 100 mg which i had already been taking. @nanonug Did you see improvements from the first dose itself or did it take some days ? I am not seeing any improvements. I avoid taking l-carnitine because it upsets my stomach.
 

nanonug

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@nanonug Did you see improvements from the first dose itself or did it take some days ?
It took me a few days. I refer you to my protocol here: From brain fog to clarity in 30 minutes. I consider all of those things important for me. In particular, I'm taking a special kind of Vitamin B1, fursultiamine.

In any case, my protocol assumes Naviaux's hypometabolism is present which may or may not be your case.
 

Learner1

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From the 2016 FDA compounding committee briefing document on DCA:

Dichloroacetate sodium
Its safety, based on both non-clinical and clinical studies, is of significant concern. In non-clinical studies, dicholoroacetate shows potential toxicity in multiple organs as well as increased carcinogenicity. It also shows decreased fertility in rats. Toxicity was also noted in clinical studies, primarily involving the nervous sytem. Dichloroacetate also exhibits significant inter-individual variation in absorption and excretion, and the drug accumulates over time, complicating both dosing and the management of any toxic effects. FDA is aware of one study being closed due to safety concerns and patient deaths.
I have seen DCA used for cancer in clinics I've been in, and I wouldn't use it without an expert doctor's supervision.
 

msf

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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.
 

msf

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From the 2016 FDA compounding committee briefing document on DCA:


I have seen DCA used for cancer in clinics I've been in, and I wouldn't use it without an expert doctor's supervision.
Since it's used in cancer trials, we kind of need to know if it was the cancer that killed them or the DCA.
 

msf

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Oh, and could the people trying it say whether they had lactic acid symptoms beforehand, and whether it has had any effect on those? Thanks!
 

M Paine

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The initial 10 patients were treated with a nutriceutical consisting of the 400 mg of sodium salt of dichloroacetate (DCA) plus 100 mg Vitamin B1. Afterwards the formulation was extended by adding alfa-lipoic acid (ALA), acetyl-l-carnitine and the oxidoreductase ubiquinone Q10.
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...

Among the non-responders several organic diseases were detected, including among others, severe osteoporosis due to hyperparathyroidism, late onset hypogonadism (LOH), a neuro-endocrine tumour, early stage multiple sclerosis, and autoimmune limbic encephalitis. In these patients the ME/CFS complaints should be classified as secondary [2, explaining the lack of response to nutriceutical treatment.
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.
 

msf

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I have seen it successfully used to beat cancer, so nothing killed those patents as they're still alive.

There is also the experiment and info on pages 6-10 of the attached.
I was trying to point out that, in cancer trials, people often die from the cancer rather than the side effects of the treatment (ie because the treatment didn't work, not because it's toxic), so we need to know which it is. The paper you linked to shows it kills cancer cells in combination with alpha lipoic acid.

Re the safety side, I found this http://www.dcaguide.org/dca-quality-analysis
 

rebar

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@Hip, I just googled depression and Sodium Dichloroacetate, it is definitely linked one study used the word significant, so for now I'll wait.
When I crash it can trigger depression, not always but often when I feel pressure in my head and neck.
I assume it's triggered by inflammation.