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[Guest guest]

Hello!

I've justjoined, read a few of the posts and feel the need to talk about

what happened today. I had read about LDN back in April and felt

very excited about the possibilities. I've had CFS/M.E. since 1976--it became

worse in 1987 and I was finally diagnosed in 1987 with Fibro and/or CFS by

both a rheumatoligist and neurologist. I have been on Social Security Disability

since 1997.

Since reading the April article, I've done more online research on LDN and

felt confident that it would be safe to try. I made an appt. with my internist

who has always been helpful and supportive. We have tried every available

prescription drug in recent years (Lyrica, Cymbalta, Savella, etc.) which

was supposed to help with FMS symptoms. He has also prescribed

Ultram, which only made me feel nauseated and "spacey"--did nothing for pain.

Okay, today I had an appt. with him to discuss the LDN. I printed out everything

from the websites, including info on the Stanford and PA State research. At

first my dr. seemed interested. Then he looked horrified. He said he would not

"go there" and would not explain why. I assume that he feels this is a "heavy duty" opiate,

as he compared it to oxycontin. He said perhaps I should go to a "pain clinic",,,

he refused to explain his refusal to even discuss this with me. I felt frustrated

and disrespected--after five years of seeing this man every 3 months.

He renewed my Rx for Clonazepam (which I've been taking for 15 yrs, 1 mg/night)

and also gave me a prescription for Vicodin, which barely takes the edge off the

pain and which I rarely have taken in the last 20 years. This dr. knows I've never

had any substance abuse issues--i have never smoked cigarettes and rarely

drunk alcohol. Before the illness became so severe I had a great career, family, etc.

So would someone please explain to this "newbie" what's going on? Why did my

normally unflappable dr. act as if I'd tossed a live grenade at him? Is he terrified at

losing his license or is this just him? If it's the former, then wouldn't it be better if a family dr. could prescribe what her/his patient needed instead of sending them to pain clinics or who knows where? This seems truly nuts to me.

He did ask his nurse to see if she could find a "pain clinic" to refer me to...she'll

call me..

I feel very discouraged.

By the way--those "racing thoughts" I have lived with for many years and know others who have them who also have CFS...just part of the overall syndrome. Clonazepam used to help

with that, but not so much any more, but it does help me stay asleep. If LDN caused

my thoughts to race, it wouldn't bother me! I am desperate after over 20 years for

some energy, for some chance at a life, just to be able to try this--I've tried everything

else that wasn't totally "screwy"...(I have a slightly low thyroid which is now normal on thyroid meds. I take a low dose of neurontin every nice..doesn't seem to help, except with sounder sleep. Other than Excedrin, that's all I take--and more meds than I've taken in my life at one time!)

Thanks everyone for bearing with me and listening. I don't know if LDN would help me,

but I feel I deserve the chance to try it.

All the best,

Tee