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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Did the mitochondrial clinic prescribe L-carnitine and CoQ10? Were they of any bennefit for you? What were their suggestiions?
Do they say anything of virus, retrovirus or bacteria? Do you think that there is any point in going to a motochondrial clinic?
Thank you Marge
For me, the confusing issue is - what about the patients who have been diagnosed with a mitochondrial disease and have tested positive for xmrv? Do they actually have both - did xmrv cause a mitochondrial disease (vs a dysfunction or disorder)? Can the mitochondrial experts tell the difference? I don't know. There is a mitochondrial medicine sympsium in Scottsdale next month and I plan on going there - and will hopefully get a chance to chat with some of the researchers and physicians and ask them those questions.
Nina, I have a prescription for carnitor (levocarnitine). I've had several EMGs and they were all normal. I know a lot of people who had no luck finding abnormal mitochondria with a biopsy but were given a clinical diagnosis. You probably hear the stories also, of people getting multiple biopsies and not discovering the genetic mitochondrial disease until years later. A negative biopsy is frustrating because it just leaves us still wondering. I had hoped the xmrv virus would help to distinguish the genetic mitochondrial problems from the acquired - but if with xmrv your DNA changes and your children can inherit it, I'm afraid I'm just as confused as ever. I haven't tested for xmrv yet, but if I do and I'm positive, how would I know if carried this for years (from a parent) and just came across that "thing" which triggered symptoms?Marge, that is very interesting, thanks for posting about your experiences and symptoms here.
In my case it was the other way round, they suspected a mitochondrial disease before I got my M.E. diagnosis. I have abnormal Carnitine as well but the musle biopsy showed no hereditary mitochondrial disease (that is all they test for) and no muscle disease either. My symptoms are quite similar to yours, but neither Carnitine nor Q10 helped with them. I have to take Carnitine on a daily basis orally plus injections just to stay on the lowest end of the normal range. Can I ask which form you are taking?
Did you have an EMG by any chance and if so, did it present with any irregularities? Mine did, several times actually but when the msucle biopsy came back ok they just dropped the whole subject.