Re: effects of radiation on mito

[Guest guest]

Marjette,

I am very interested in your comments about the effects of radiation

on mito disease. I have searched (without success) for another mito

patient who has been through radiation because I have a meningioma

(brain tumor) and need to have gamma knife or some other form of

radiation to halt growth in order to avoid brain surgery. Don't

think I would make it through brain surgery.

Your experience with radiation does not surprise me though, as I

felt there was a good possibility it would have permanent effects

for me. The good thing about gamma knife is that it is one single

dose, not a series, which I may tolerate better. But no one really

knows. Meanwhile, the tumor continues to grow, though slowly, so I

really need to do something before it causes irreversible problems.

I am going to print and save your email to give to the gamma knife

team. Your experience will carry a lot more weight than me just

expressing my concerns about possible effects on mito. Thks so much

for sharing.

You asked about things to do to help get you out of your post-

radiation slump. In Nov 2002 I had to go off an anti-nausea drug

because I developed some heart side effects. This threw me into

major drug withdrawal symptoms complete with violent shaking and

major mito mess, from which I have never recovered. Presently, I am

working through a new treatment plan combining K-Phos Neutral and

creatine (tricreatine malate). The idea is that this combination

will boost levels of phosphocreatine in muscle as an alternate

source of ATP. I've been on K-Phos Neutral for a month now and

seeing real improvement (thus able to do email!), which seems a

miracle, as I've been vegetative since Nov 2002. Soon we will add

in the creatine. Also plan to gradually switch my j-tube formula to

Prosure, which is supposed to help build lean muscle mass.

Take care,

Barbara

> Thanks Alice, Laurie and Sheila for some input. Guess I should

have

> been more specific. I am on the mito cocktail but was on that

before

> seeing s. He recommended a few other specialists to check on

my

> condition, but nothing else in the way of a treatment. He felt

that

> my blood tests may not show the correct type of mito although he

felt

> that I had it. He also felt that determining the exact type of

mito

> did not increase treatment choices. ( I know that discussion has

> been posted before.) I was doing pretty well until undergoing

> radiation treatments for (very early) breast cancer over a year

ago.

> No chemo needed and the cancer is gone, but my energy and stamina

> plummeted leaving me quite disabled now. Even leaving the house

for

> doctors appts is difficult. All of my doctors, including s,

feel

> that the souce of my situation is the effect of radiation on the

mito

> but have no ideas on how to return me to my pre-radiation

condition.

> My family doctor has tried nutritional IV's and shots of adenosine

> phosphate, ( anyone else trying that?) but s had no ideas. I

see

> him again in late May and just hoping to hear about some other

> experiences before my appt. Thanks, Marjette