I used to be very active here and also visited other FM and CFS boards.

Then I found out I had lyme disease. I visited lyme disease forums, and found out that just about everybody there was diagnosed with FM and/or CFS before they found out they had lyme disease!

Lyme literate doctors are hard to find. They either have the disease themselves or someone they love have it. Most other doctors don't know how to test for it, and certainly don't want to spend the time it needs to treat a complicated, little understood illness.

The good news is it's treatable. My LLMD (lyme literate) told me I'd feel substantially better in a year, and my treatment would take 2 years. Then a coinfection made itself known, and my treatment looks like it will take 3 years.

This is a controversial illness, just like CFS was, and FM before that. Our health system just isn't set up to handle new illnesses. Insurance companies like to have tests already in place to prove illnesses, and like them to be handled in 7 minute visits.

My best advice to anyone who wants to learn more, is to go to a lyme message board, and start reading, and asking questions. One thing that you won't see printing on the internet is the LLMD's names (or, at least, I hope you won't). They risk their licenses to treat, and their patients are protective of them.

Interesting Gail..that's one of the questions my new rheumy asked (have you ever been bitten by a tick) and one of the tests he 's doing. Yes, I have. I was raised in the country and I've always hiked adn such. I've pulled so many ticks off of myself that I can't begin to count them...never thought anything of it although I should have since my Mom had lyme disease.

I too used to be real active here, and I think it's a very helpful forum. Then we found out I had lyme disease. I began treatment a year and a half ago. It's only been in the last month or so now that I could stomach the thought of meat, and during treatment I have gained back ALL the weight I lost. Since my stomach seems to be handling the mepron much better this year, last week I re-started my lc diet.

Just wondered if anyone else has any tick-borne diseases. I have lyme and babesia (and I also had West Nile Fever last year).

-Me & Blessing, my wheelchair Service Dog

During the first year of my lyme treatment, I lost all the weight that I had been gaining thru the years. Now I weigh what I did when I got married.

I'm now off ABX and on herbs. I may finish out the treatment with herbs, and am about 80% improved now from this time last year.

I expected to lose weight (and was concerned since I was at goal, 115lbs, when I began treatment) but the first day that I eat less than 1000cal/day I might lose weight, the next I won't, and then after that, on the days that I am able to eat more than 1000, I gain weight no matter what it I eat. It's really the pits! My metabolism adjusts very quickly.

The only way I can lose weight is to consistently keep eating. As you know, that can be rather difficult. At least this time with mepron is better than last, and instead of flagyl (depending on what my SPECT scan shows) my LLMD mentioned we may go with IV for the lyme itself.

Did you have musical hallucinations? He said that's what makes me think a radio is playing softly in the background. ... that part of my brain is inflamed and putting pressure on the music-processing center section, so I'm hearing songs from my past. Most of the songs are from the 70s; when I was in High School. It's kind-of scary to think about.

So how long were you on what ABX, and why were you done so much sooner than you expected?