Dr Fran Kendall?

Ema

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Mitochondria are a part of a cell that are responsible for turning sugar and oxygen into energy or ATP. They are present in every type of cell except for red blood cells. So diseases can affect basically any part of the body where energy is required.

It used to be a muscle biopsy was the only way to know if you had a mitochondrial dysfunction but apparently there are other tests now that are less invasive.
 

Sushi

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Mitochondria are a part of a cell that are responsible for turning sugar and oxygen into energy or ATP. They are present in every type of cell except for red blood cells. So diseases can affect basically any part of the body where energy is required.

It used to be a muscle biopsy was the only way to know if you had a mitochondrial dysfunction but apparently there are other tests now that are less invasive.
Yes, there are lab tests that can be done from blood--I have had ATP and two other mito-function things (which I forget at the moment) measured.

And, as I remember (which is always a risky thing), the muscle biopsy method was only useful for diagnosing inherited mito disease, not acquired.

Sushi
 

minkeygirl

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It would seem that we would want to support mitochondria even if we don't know for sure if there is a problem since we need more energy. No?
 

Sushi

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It would seem that we would want to support mitochondria even if we don't know for sure if there is a problem since we need more energy. No?
There has been a lot of discussion on this--how much we want to "push" mito function when we are so impaired. I believe Rich Van K used to recommend low to moderate mito support but not trying the push it, as this could add biochemical stresses elsewhere.

Sushi
 

minkeygirl

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I've seen supplements that support mitochondria. I don't know enough about it, and can't understand with my ME brain. I was curious since I've seen it talked about here.
 

Ema

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It would seem that mitochondrial dysfunction would be a problem in ME/CFS, yes. But we don't know why...or necessarily how to fix it which is my concern with seeing this type of doctor.

On the other hand, I'd like to have some of these seemingly disparate diagnoses tied together somehow and this doctor seems more like a medical detective than a lot of others I've seen.

I guess I will see!
 

Ema

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Well, this was a pretty big waste of time and money unfortunately...basically I spent $500 to get a list of tests for my local internist to run to determine if mitochondrial dysfunction is an issue for me. I'll post this list once I get it so no one else has to make that decision. She says they are all easily done at LabCorp or the like except for a buccal swab that goes to some lab in PA.

On the one hand, it should be definitively (or as definitively as possible) determined that there is a problem before attempting any treatment, but I was more interested in finding out WHY why mitochondria were not functioning anywhere near normally because I don't think I have a genetic mitochondrial disorder. Or at least not one that is well defined and linked to a specific genetic disease.

I think my mitochondrial function is low due to infection or possibly due to my high adenosine theory but she was not interested in talking about any of that. In fact, I got the feeling she hadn't read much of the history I spent the better part of a week putting together. So much for curiosity and time spent reviewing records prior to the appointment. It all felt very rote - like she'd given the same speech several times already that day.

She asked me why I was interested in knowing...said that she had met with a woman my age that morning with similar symptoms who had 4 children so it was obvious to her why that woman would want to know about her genetic vulnerabilities, but since I was child-less, why was I interested? Well, hello, I'd like to fix them, just for ME. No children required!

And it was supposed to be a Skype video call and she wasn't prepared so it was a regular phone call which I think should not be the same price as a video conference. (I'm not sure if that is too picky though). She was also almost a half hour late.
 

Ema

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Oh, and it takes 2-3 WEEKS to get this list of tests (that must be the same for nearly every patient she sees) after the appointment.
 

Ema

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So the list of tests she recommends for me to look for biomarker abnormalities seen in mitochondrial disease are as follows:

Acylcarnitine Profile (Labcorp 070228/Quest 59432)
Carnitine Total Free (706500/30299)
CPK Total (001362/374)
Lactate or Lactate Acid (blood) (004770/585)
Plasma Amino Acid (095638/767)
Pyruvate Plasma or Pyruvic Acid (004788/765)
Urine Amino Acid (912147/36183)
Urine Organic Acid (716720/59433)
 

WillowJ

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sorry your appointment was disappointing. :(

thanks for info, though. It seems fascinating to test for this stuff (and to know for ourselves! haha since she didn't like knowing for one's self, you could have told her many more than four people were waiting with bated breath to hear your results :D )
 

SDSue

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How was your experience?
Because of my strong family history and current clinical picture, she ran me thru all the diagnostic testing for mito dz ($$$) and started me on a mito cocktail ($$) which did nothing. She was familiar with dysautonomia, which she said is now being recognized as the cause of most symptoms in mito dz.

Unfortunately, that's where things went poorly. Despite many abnormal test findings, she was unable to put together a diagnosis, which is not uncommon for a doctor unfamiliar with ME/CFS. But she did rule out many systemic diseases that other doctors overlook.

She was unable to then support my disability claim because there was no clear diagnosis. Overall, I wasted almost a year believing she could and would do so.

In retrospect, she didn't do anything that an open-minded GP couldn't do. I still had to be my own "physician", interpreting and directing testing and care.

I found communication with her office to be patronizing and rude.

Like you, my Skype visit became not only a late phone call, but she was totally unprepared.

I find it ludicrous that a doctor, who advertises and charges as she does, can remain clueless about ME/CFS. I have to wonder how many of us she has seen, charged, and dismissed.

In summary, I would have been much better off spending that money to travel to a bonafide ME/CFS specialist.
 
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This is a really informative thread!

I was under the impression that she would run genetic tests, both for mitochondrial diseases, and other genetic diseases. Was this not the case?
 

Gingergrrl

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Thanks @SDSue for leading me to this thread and it was very helpful and informative. I think my ND is far more knowledgable about ME/CFS and mito stuff than this "specialist" claimed to be! Sorry you had to waste your time with her.