For the Chronic Lyme, or Long Term Sufferers...

We both were labeled with the Fibromyalgia syndrome. It was hard for me to convince her she probably had Lyme, but she started reading what I was sending her and she now agrees. I'm not sure when she got infected, if it was where I first did, or where I got infected the second time. She was 3-4 when I got infected the first time but spent as much time in the yard and woods as I did. Same with my second time, and she was 12. That would have been when I first started taking her to the E.R. for severe pain and vomiting they couldn't identify. She's 35 now.

I at least have Medicaid now. She has no insurance at all and is racking up some hefty debts. She's applied twice now for disability. I don't think her chances are good without any kind of decent medical documentation.

The problem with media attention or writing our legislaters is the lack of credibility tick diseases still garner here. Even though everyone knows at least one person that has Lyme or RMSF here, it's our dirty little secret no doctor wants to talk about.

I'm allergic to bee venom, bluelyme. I'm going the herbal route and waiting to share what I take with my daughter.

I was infected on the West Coast by 1970 - the East Coast Lyme disease was not "discovered" until 1984 - oh how I wish that there had been better understanding of this decades ago! I went from doctor to doctor to doctor, looking for what was wrong, and why I couldn't hold a job and raise my kids without it making me incredibly sick. But I can't hold them responsible for what was not known at the time.

I was lucky that I ended up with Dr. Edwin Masters (think Master's Disease/STARI) and he (clinically) diagnosed me properly, but he didn't know how to treat someone so far advanced with these infections. I still can't blame him, as at least he was honest and diagnosed me so that I could go on from there and find what would work for me.

We have to just keep looking for those LLMD's that DO know how to deal with a patient where ever they are in the disease process - some are better than others.