Hi all. I've had CFS since '94. I was dx'd with peripheral neuropathy about '04. Started with freezing feet and hands. Now is often all over burning skin --- like very bad sunburn -- on most parts of my body, especially when I wake in the morning.

I've had test (EMG?) by neurologist, also lumbar puncture to exclude MS and metastisizing chronic lymphocytic leukemia, and some other stuff. Was dx'd with small fiber neuropathy by emg testing. Idiopathic.

My Igenix tests of five yrs. ago showed 3 0r 4 Inds.

Does anyone here have all-over burning like this?

I posted here a few yrs. ago if you want to see more of my background.

Thanks,
Barry

My missionary friend got this, in Thailand. A neurologist there labeled as an infection type.

We found that Mangosteen was a great immune booster AND that it was sold in every market there in Thailand. It worked, it slowly went away.

I also read that metal can cause this.

Hi,

Welcome!

Some people with lyme do experience alot of burning.

Could you post your Igenex results here?

If I were you I would consider finding a good Lyme literate MD for a thorough evaluation.

You can find a LLMD at lymenet.org.....click on flash discussion....sign up for free....click on Seeking a Doctor board........create a post asking for a LLMD in your state.

Lyme is a clinical diagnosis....means it is based on history and symptoms. Lyme should never be ruled out by just a negative test....which it sounds like what your Dr must have done.

Lymenet.org also has a really great Medical Questions board. I urge you to go there and post your questions. There are alot of intelligent and experienced people there who will help you.

I am Dekrator48 on lymenet.org.

Please read this paper by a lyme expert.........


http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Take a good look at the symptom list on p 9-11.

Your CFS has a cause, even if Dr's tell you that the cause is "unknown".

Many people with with CFS and FMS later found out the cause of their illness was Lyme and other associated tick borne coinfections like babesia, bartonella and ehrlichia.

I can provide you with lots of other info if you want.

Good luck!

I tried to sign up on Lymenet.org and it told me that my IP address was not allowed. I emailed the webmaster already.

Lots of good info. It will take days to go over it all.

Yes, I think every CFS/FM sufferer should go over Dr. Burrascano checklist.

"Ask, Seek, Knock"

Hi,

Hope you get the problem with lymenet solved so you can sign up and get on their boards.

Hope you find the answers you need to get better.

Too much of a flare today.

Nanie46 : thanks for the links. Do I need hi-speed inter-net for this site? Don't know what a "flash discussion" is. I live in a very rural area, with very slow dial-up only (19.2kbps !). Will it work?

Again, many thanks,
Barry. (I'm getting very discouraged by this whole Lyme-not Lyme controversy with my docs.

Hi,

I think you will be ok with dial up. I'm not sure why they call it flash discussion.

Give it a try. It's a great, helpful site.