too-long rant, and Re: mito cocktail

[Guest guest]

Hi RH

I REALLY hope this doesn't come across as quarrelsome, but I cannot for the

life of me decipher why you would not feel comfortable posting a list of 15

substances, or why for that matter it would take that much time. You

yourself mentioned CoQ10, and I suspect Carnitine is another, and presumably

many others are just OTC vitamins. Is Dr. Shoffner's list copyrighted, or a

trade secret, or something? I understand that I should consult with a

doctor, etc. But people in this forum talk of all kinds of meds for thyroid

and other conditions, for example. What's the issue with this particular

list of 15?

By the way, I spent two years unearthing ON MY OWN that I actually have a

mito disorder, despite seeing numerous doctors and having two surgeries. I

then spent the next four years trying to get hooked into any specialist

doctor who knows anything at all about mito. This has been an incredibly

bizzarre story of delays, confusion, and useless referrals to any number of

doctors. When I was finally referred to one last FEBRUARY, I thought my

problems were, well not exactly over, but I had some hope. I was given an

initial appointment in SEPTEMBER. The day before that appointment, after I

had made all sorts of arrangements to get to the appointment, the

receptionist called to say that the doctor was out of the country (I later

found out that this was for a conference, which I really doubt had come up

just THAT DAY). When I finally did see this doctor, he told me that he would

have a battery of tests for me, details of which he would email within a

week. That was four weeks ago. When I called, the receptionist told me that,

you guessed it, he was again out of the country, and would return this

coming Oct. 25, six weeks after my appointment. I'm not holding my breath

that he will be getting back to me soon. And this is just for the TESTS he

wants to do, so he can write another case-study for a journal. He did tell

me that there probably wasn't any actual treatment he could offer. He seemed

only mildly interested in the fact that I have had constant horrible

headaches, severe dizziness and several outright faintings, and bouts of

chest pains.

After at least getting a diagnosis, I lost my health insurance when I

couldn't work anymore, four years ago. I have been so completely

incapacitated that it has taken me a very long time to complete the forms

for disability and health coverage, and this is only recently moving

forward. I have been nearly homeless for two years. I have had crazy-making

lawsuits (another bizzarre story) by my ex-wife that have stripped my tiny

savings. I don't exactly have a " doctor " , unless I pay my former PCP (like I

did, a couple of weeks ago) to listen to me, commiserate, and ultimately

tell me nothing I haven't already found out by extensive online research and

forum participation, and studying neurology and metabolism textbooks.

So I hope that you can imagine my reaction when you say " Perhaps your doctor

can get a mito doctor to do a consultation " .

I once saw a doctor who refused MY very humble hopes to somehow help out,

with self-observations. He said that there should only be one " driver " of

the " car " , and that he should be the one. I said I could help a little maybe

(after all, wasn't it I who had brought my own mito condition to HIS

attention?), and he said " he didn't need me to read the map, and he would

appreciate it if I didn't play with the radio while he drove " . This was a

chief of neurology at a major teaching hospital. I also told him that I had

sky-high triglycerides but oddly low HDL, and he said " Welcome to America "

which I took to mean that he was essentially indifferent to our " gross

over-indulgent lifestyle " here in the USA, that leads to high cholesterol.

He apparently missed the oddity I was trying to point out, and also didn't

notice (or care) that I am not the least overweight.

Please excuse my tone, it's just that I have been REALLY stressed out over a

series of " perfect storm " misfortunes (the above just touches on a couple,

there's more). In the meantime I am taking a couple of OTC supplements that

I pay for myself, ordered online at the best price I can find. When I get

this " consultation " (in the next century?) I'll compare the advice with my

own knowledge and decide for myself what I am going to do. This is not an

attitude I've come to easily, or assume happily.

Again, everyone please excuse this too-long rant. I'll try not to whine

again (soon anyway). :-)

Regards

Steve D.

Date: Thu, 14 Oct 2004 21:47:32 -0000

Subject: Re: mito cocktail, Dr. Schoffner's list of about 15 ???

[...]

2) The dr. I saw was Shoffner in Atlanta, FYI. I wouldn't feel

comfortable posting the list (and it would take some time), but I

know many people (including myself) have noted here that they are

taking various suppplements, on and off the list, with various

results. Perhaps your doctor can get a mito doctor to do a

consultation, and take their recommendations for treatment?

Take care,

RH

> [...] Nonetheless, can anybody point me to this particular list?

>

> Peace,

> Steve D.

> [54-year-old male, late-onset mito]

>

> > Date: Mon, 11 Oct 2004 19:26:28 -0000

> > From: " ohgminion "

> > Subject: Re: 2nd muscle bx: to be read at Columbia-Presbyterian,

NYC

> >

> > [...]

> > I was told that whether or not I have MELAS exactly, I would be

> > treated the same way, based on my symptoms and what the lab tests

> > showed. The basic thought is:

> > 1) Check out systems with problems (for me, eyes, muscles,

> > digestive).

> > 2) Get a baseline for systems without problems yet (for me,

heart,

> > ears)

> > 3) Treat by going down the list of the " mito cocktail " . Starts

with

> > CoQ10, and there are about 15 on Dr. Shoffner's list.

> > [...]

> >

> > Take care,

> > RH