Successful Pilot Study Treating PDH Deficiency in ME/CFS (B1 / CoQ10 / ALA / Algae + HOA)

[JaimeS]

I keep trying because I know so many people who have succeeded in getting back up to a higher level with these sorts of combinations.

I took NAC for a bit and it made me feel a bit worse. Just barely noticeably. As always, I went off and on it a few times to be sure.

I have a friend who says it made him much, much worse however.

I have had an interesting experience with intravenous B12, where I felt fabulous for about 15 minutes before I went downhill and crashed hard enough to leave a dent in the earth! It appears my body would like B12 but that something else is missing, and leaning on B12 that hard just means I'll be more depleted than before.

I have had good experiences with high dose oral B vit blends, and have been able to taper off of them until I'm at about half a dose of the pills per day. But at first I was taking buckets. This disease shifts a lot.

 

[TreePerson]

Yes @JaimeS thats been my experience. I have been able to take half a fairly standard oral B (Berocca) and 30mg Q10 without difficulty but adding in the carnatine and alpha lipoic acid or possibly bit extra thiamine seems to have unbalanced me again. :-/

 

[Aubry]

I went to Prof. Comhaire this week. I got the supplement from the study. On the bottle the label says "Na2Ca" If I look up seems some form of EDTA?

 

[Chris]

@Aubry--thanks--let us know how you get on!

 

[alkt]

Hi @Jesse2233 ,

The study by Comhaire has been published in a journal run by OMICS Publishers that are widely viewed as Predatory publishers. Typical of such predatory journals, the publishers have allowed Comhaire to publish results with absolutely no description of the nutraceutical formulation in terms of dosing and scheduling. There is also no description of the the 'sodium salt of one of the halogenated organic acids present in a particular genus of algae'. Such deliberately vague descriptions where key 'drugs' used in humans are not described are not allowed in high quality scientific journals for obvious reasons: Scientific findings should be testable and repeatable by independent labs and that unethical research involving humans should be avoided at all costs.

Sometimes, such papers are simply promotional tools used to advertise new drug treatments on the internet. Sometimes it can be difficult to distinguish between publications reporting genuine research from publications being used as advertising material under the guise of scientific research. This paper has a number of issues that raise concerns about the findings and their significance in CFS.

Rodger

the patent pending does give it away just another supplement that will be more expensive because they are the only people allowed to market it once they have the patent.

 

[Chris]

I may be wrong, but I doubt that the patent, even if granted, could give Comhaire entire control over DCA, and we are free to add the supplements we already take. I agree there are odd things about the paper (there are in fact two papers, one in Medical Hypotheses). Trying for a patent is pretty normal behaviour these days; I recall I think that Judy M. applied for one, and I think Mella and Fluge have applied for a couple.

 

[JaimeS]

Agreed, we can't expect these people to work purely out of the goodness of their hearts.