Mitochondrial doc and enzyme co Q 10

[andreamarie]

After waiting about eight months I saw Dr. Stephen Massaquoi at Mass General Hospital.
Dr. Kenneth Sassower, a neuro and my sleep specialist, made the referral.
The good news is that I was in a crash when I saw him; the bad news is that I was in a crash when I saw him. (I had waited a couple hrs and my appt was in the afternoon.)
He spent a LOT of time with me and did the most extensive neuro exam I ever had. He also talked a lot about health ins (not mine) and elements of fatigue. I honestly don't remember what he said about them because at a certain point I tuned out.

I assume he starts by prescribing enzyme co Q10. I was supposed to take 600 mg for a wk and then up to 1200 after I emailed his office. He said RARELY do patients get side effects but did mention diarrhea and constipation. I tried not to hear that because I usually get g.i. side effects. I have a history of Crohn's and chronic intractable GERD. Two days after the 600 mg. I had watery diarrhea which I thought I could control with 2 immodium. After ten days I couldn't handle the cramping, the immodium wasn't keeping me normal and I had no appetite. THIS IS NOT THE CROHN'S. I'VE BEEN IN REMISSION FOR YRS AND DON'T HAVE THESE SYMPTOMS. Also, I am no sissy when g.i. stuff happens.

I stopped it today after taking 200 mg. and emailed him as directed.

The good news about being in a crash is I had my labs done that day. He did mention a muscle biopsy but I blanked as to how he would determine this. I have to stay off Q 10 for at least a couple days; I know my gastro would have a fit. Also, I was acquiring something that resembled IBS and felt like I was exchanging one illness for another. Very disappointed but am awaiting email.

 

[MargeM]

After waiting about eight months I saw Dr. Stephen Massaquoi at Mass General Hospital.
Dr. Kenneth Sassower, a neuro and my sleep specialist, made the referral.

The good news about being in a crash is I had my labs done that day. He did mention a muscle biopsy but I blanked as to how he would determine this. I have to stay off Q 10 for at least a couple days; I know my gastro would have a fit. Also, I was acquiring something that resembled IBS and felt like I was exchanging one illness for another. Very disappointed but am awaiting email.

Andreamarie,
I hope you learn something interesting from the labs that were run. If they are discussing doing a muscle biopsy (to determine if you have a mitochondrial disease?) I would suggest you do some research on that. From what I understand, lately most mito docs are leaning toward more non-invastive testing first. They get so few real answers from the biopsies and blood tests and buccal swabs are becoming more the norm. Be sure to ask a lot of questions.

Take care,
Margem

 

[rlc]

Hi andreamarie, what your discribing are known side effects of co-q10 info on it here http://www.nlm.nih.gov/medlineplus/druginfo/natural/938.html

All the best

 

[Sallysblooms]

I think strarted on a lower dose would be good, could you ask the doctor?

I take about 120mgs per day and it is fantastic! Great for the mitochondria, heart etc. I started low, I do that will everything. Finding the correct dose is important with any supplement or prescription.

 

[andreamarie]

I will start on a low dose eventually. However, I am not optimistic because my g.i. tract is my weak link. I am aware of the side effects. It took five days for my gut to get back to normal.

 

[anciendaze]

I can only echo what others have said: start low and titrate up. Doctors aren't the ones suffering side effects, and are trying to save their own time. (They also think in terms of a generic patient, and most patients don't report adverse reactions. Example: Neurologically, the difference between right-handed and left-handed can be important. After treating me for a decade, one doctor still assumed I was right-handed -- generic patients are all right-handed. Fortunately, he didn't perform brain surgery on me. If you don't speak up, concerning significant differences, you will be treated generically.)

I'm tolerating 200 mg./day well. When I accidentally let my supply run out, I had leg cramps which disappeared when I resumed. This kind of evidence reveals positive effects, and this approach avoids most negative ones.

 

[richvank]

Hi, all.

There is a great deal of evidence for mitochondrial dysfunction in M.E./CFS, including the testing of Dr. John McLaren Howard of Acumen Lab in the UK, reported in the paper by Myhill et al., and also including many other papers in the published literature that touch on various aspects involving the mitochondria.

I don't know of published evidence for genetic mitochondrial disease in M.E./CFS, but I think it is very possible that some cases involve mito disease as well.

Coenzyme Q-10 is needed to carry energetic electrons in the respiratory chain (electron transfer chain) of the mitochondria. There is published evidence that supplementing it is helpful in M.E./CFS. I have seen individual test results showing it is low in many people with M.E./CFS, but these data have not been pubished, as far as I know.

Dr. Sarah Myhill includes Co Q-10 as part of her mito support package, and reports benefit in many of her patients.

Dr. Amy Yasko has noted that methylation is required for the synthesis of Co Q-10 in the body.

In the Glutathione Depletion--Methylation Cycle Block hypothesis for M.E./CFS, which I proposed in 2007, the deficit in Co Q-10 is caused by a partial block in the methylation cycle. I have also proposed that the mito dysfunction in M.E./CFS is caused by a combination of the effects of glutathione depletion and the partial methylation cycle block. These include deficits in Co Q-10 and carnitine as well as oxidative stress and a buildup of toxins, including heavy metals and other toxins.

While supplementing Co Q-10 can be of some help, if my hypothesis is correct it will be necessary to lift the methylation cycle block and to raise glutathione back to normal in order to completely remedy the mito dysfunction in M.E./CFS. The "Simplified Treatment Approach" is designed to do this, and based on the improved energy status that many experience from this treatment, it appears that it does in fact improve mito function. More information on this can be found at www.cfsresearch.org by clicking on CFS/M.E. and then on my name. I do not have any financial involvement in the supplements that are included in this protocol, or in the methylation pathways panel offered by Health Diagnostics and Research Institute in New Jersey, which I recommend for determining whether there is a partial methylation cycle block and glutathione depletion in a given case.

I hope this is helpful.

Best regards,

Rich