i have been reading a lot about supplements to improve the way the mitochondria work in cfs/me. a lot of doctors seem to recommend things like ribose, carnitine, magnesium and nadh.

has anybody tried any of these and did they help at all?

i have had cfs/me for 3 years now and nothing has helped so far so im getting a little frustrated.

thanks.

Hi janeygirl81, & welcome!

The mitochondrial connection is generating a lot of excitment lately... I credit my recovery to a concentrated phosphatidylcholine supplement (Brand name \"PhosChol\" or Polyenylphosphatidylcholine, PPC).

Mitochondrial membranes are essentially made of phospholipids, and repairing these membranes with phosphatidylcholine really helpes. This is also the key fix in \"phospholipid exchange\" therapy. Surf around the MCS board here for more info on this.

A great read on mitochondria supplements here:

www.lef.org/magazine/mag2005/feb2005_report_mitochon_01.htm

Cheers! & Good Luck!<br /><br />Post edited by: bolam56, at: 2009/03/31 18:43

Hi,

Welcome to the site. I hope we can help you out.

I agree with bolam56 about the phosphatidylcholine. I am also seeing very positive results using a product called Mega PC-35 from Jarrow Formulas.

I have also found that D-ribose and acetyl-l-carnitine have very noticeable effects on my energy levels. D-ribose is particularly powerful as it is a form of sugar that can be directly converted by the body into ATP (energy). I have no doubt that these supplements are worth a try in anyone suffering from ME/CFS.

Good luck if you decide to give them a go!

In the book titled \"WhatYour Doctor May NOT TELL YOU about Fibromyalgia\", he talks about ATP and how it affects every cell in our body.

Has anyone read the latest endition? There were a few things new to me and I've had fibro/ccfids since '88.

Tala

I have tried both the Patrica Kane-Detoxx PhosChol treatment protocol...and also Dr Myhill's D-Ribose, Carnitine, B12 and Magnesium injections etc. protocol and I have to say that neither of them worked for me.
My primary symptoms are in order of severity: mental and physical tension, stress, inability to breathe deeply, gut problems and fatigue.

I am currently spending a fortune on tests with Breakspear Hospital. These tests show that I have raised antibody levels for Chlamydia Pneumoniae and a low 2,3 BPG!!

My symptoms have cycled and taken many different forms over the years...currently things are fairly bad. I fortunately don't get any physical pain...but the worse symptom by far is the mental problems...tension, low-mood, irritability, mental lethargy. I have yet to try antibiotic therapy having been scared to do so by all the holistic doctors but I think I might give it a go...not broad-spectrum though.

If you do try some of the supplements that didn't work for me I hope they work for you..they must work for some people or they wouldn't be going on about them so much.

Hi Joey,

It sounds like you have a virtually identical set of symptoms and issues to me (although I don't have respiratory problems).

The problem with the approach of using phospholipids and the mitochondrial/energy nutrients is that they are unlikely to work if you have major gut dysbiosis and hence substantial liver toxicity. For these approaches to work the gut first needs to be sorted out, otherwise it's like trying to wash dishes in dirty water.

With these illnesses we always need to have an open mind. Using antibiotics that specifically target pathogens deteced by lab tests is no bad thing as long as probiotics are also used to ensure the balance of gut microflora is changed in a positive direction.

With regards to the low 2,3 DPG you might be interested in this article about Dr. Paul Cheney's recommendations - Dr. Cheney: Increase Your Oxygen Intake.

I've mentioned this in a reply to your comment elsewhere on the site - I think it's really important you have an adrenal stress index (ASI) test performed as your symptoms suggest low adrenal function and you may well benefit from treatment to improve address this.

Just out of interest, what other tests are you having done at Breakspear?