Just diagnosed with FM

[Guest guest]

Hi group.

I was wondering if you could help me. I have just been diagnosed with

fibromyalgia. I've done a bit of reading but it seems to be split into

two camps. Those who say its real and those who say its a crock.

All i know is that the pain i feel everyday is most definitely real.

Can anyone give some advice on what FM actually is and if there is a

cure?

Thankyou

dee

[Guest guest]

When I took the gamma pentin I was also taking Valtrex and had a terrible

reaction after the second injection of the gamma pentin.

I felt like I was at death¹s door. Couldn¹t eat, read, watch TV nor talk on

the phone. It was August and I was in bed with my flannel jammies on and

the electric blanket turned up. It felt like I was having a hexheimer

reaction so I cut my pills in half and that seemed to help. After about 10

days my symptoms lessened. I finished the injections (4 in all, once a week)

and returned to regular dose of the Valtrex but I still haven¹t returned to

my mediocre state of health that I had in June. Since I didn¹t get worse

with shots 3 and 4 I am guessing that it wasn¹t the preservatives.

When I asked my primary care physician for a referral to visit the Fibro

and Fatigue Center in Philadelphia he resisted. Yesterday I was once again

tested for Lyme Disease and my Dr. wants me to see a Lyme literate doctor

who believes that all ME/CFS is really Lyme. AT this point I am thinking

about canceling my app. With the FFC in Phil. And trying the ABX treatment

for 3 months to see how I fair.

The Lyme Dr. was on a New England TV channel about Lyme and has been swamped

with new patients. Now you have to fax your ³story² and labs to see if you

qualify. Unbelievable.

Lois

> Hi Lois, yes, it¹s a rough road, isn¹t it <sigh>. I wonder if you reacted to

> the preservative in the Gamma Globulin? Some of us are notoriously

> allergic/reactive to these, including me. I got such a good pick up from it

> many years ago (I¹d say it was the most success I¹d ever had with a

> treatment, my list is as long or longer than yours of things I¹ve tried in

> 22 years!), but I became sensitive to the preservative and had to stop it.

> At that time all the preservative-free stuff was going off to Gulf War 1 so

> none was available internationally. Just a thought. Good Luck at the F Œn¹ F

> Center, I hope you find some help there.

[Guest guest]

Yup, Lyme is the “New CFS”, lotsa press lotsa interest, actually the same

old battle but with a twist. I do wish that Lyme and ME folk could

understand that these are 2 different conditions, but of course one can have

both. But ME isn’t caused by Lyme. It is certainly worthy of investigation

because I do think that the Lyme in its various forms is hugely on the

upswing - not to take away from Lyme activists, but you can’t see everything

through Lyme-colored glasses. Well worth getting tested at the least. I do

hope that you feel better soon dear. Aylwin xox