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mitochondrial disease and CFS

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andreamarie

Senior Member
Messages
195
Saw new CFS doc today for test results. Told him at last appt sleep specialist (neurologist) was suspicious of mitochondrial disease. CFS doc did some labs that are markers for mitochondrial disease. Said I should have muscle biopsy but he's not an expert in metabolic disorders. So will have to see another specialist. Elevated ammonia and lactate amidosis. I've seen mito discussed on board but can search doesn't show anything up.
 
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FernRhizome

Senior Member
Messages
412
Hi andreamarie:

Check out the united mitochondrial diseases foundation: umdf.org
you can call them for more info too. They can suggest mito doctors in your area. You want the best doc you can find for a muscle biopsy. I went to the cleveland clinic. ~Fern


andreamarie said:
Saw new CFS doc today for test results. Told him at last appt sleep specialist (neurologist) was suspicious of mitochondrial disease. CFS doc did some labs that are markers for mitochondrial disease. Said I should have muscle biopsy but he's not an expert in metabolic disorders. So will have to see another specialist. Elevated ammonia and lactate amidosis. I've seen mito discussed on board but can search doesn't show anything up.
Click to expand...
 
Stuart

Stuart

Senior Member
Messages
154
A primer on Mitochondrial Dysfunction

andreamarie said:
Saw new CFS doc today for test results. Told him at last appt sleep specialist (neurologist) was suspicious of mitochondrial disease. CFS doc did some labs that are markers for mitochondrial disease. Said I should have muscle biopsy but he's not an expert in metabolic disorders. So will have to see another specialist. Elevated ammonia and lactate amidosis. I've seen mito discussed on board but can search doesn't show anything up.
Click to expand...

Forums seem glitchy today.

Dr. Sarah Myhill has been at forefront of mitochondria dysfunction in CFS. A good place to start is her web site. http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure
She is an author of an important paper "Chronic Fatigue Syndrome and Mitochondrial Dysfunction" or http://www.ijcem.com/files/IJCEM812001.pdf

There are some other items that discuss infections and damage to mitochondria, viral, and retroviral, now specifically there is recent information on XMRV and how it can cause damage.
 
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andreamarie

Senior Member
Messages
195
Fern, if I have it done I'd have it done at Mass General in Boston. My sleep doc neurologist is fluent in Spanish and he translates for neuro dept. Told me that children are coming to Mass General from Mexico and Latin America for consults. Neuro dept has taken over metabolic disorders and they have one of best neurology depts in world. I went to Cleveland Clinic many years ago for second opinion and dx test for interstitial cystitis. It is world class at what it's good at. What were your results, etc.
Stuart, thanks, I'll check them out. I'm seeing another CFS doc next wk at Mass General and I'll have time to read her stuff. I've been looking for a new CFS doc for three yrs and all of a sudden I have two. It's great but I'm overwhelmed.
 
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