Well, I guess we all need to be writing our congress people begging for more research and attention (lotta good that will do..... ) We've gotta make this known! We've gotta get our Drs to ALL report ALL our cases to the CDC.
One possible thing that may help is pushing our insurance companies. Some folks on here can probably sue them. More people need to do that. I believe they can win if they have MDs behind them.
I'm just starting out. I'm going to question Quest's protocol and cc my insurance. My PCP has given me a referral to a LLMD who does not take insurance. I will see him in 2 weeks. He will provide me w/ the paperwork to file w/ insurance, he believes I will be reimbursed when I file. That is one step. His nurse said that he will do labwork and prescribe treatment that will be covered by my insurance, so that will be another step. Whatever his treatment is, I can research. And if I believe it is dangerous or questionable, I will write and write and write. And I will ask my insurance for answers, and I will tell them that they HAVE to find answers.
This is every bit as big as cancer and AIDS. The epidemic is growing, a lot of people becoming disabled (eventually the gov't will realize THAT), and people are dying. Children are crippled and physically disabled. The more we scream, the more attention this travesty will receive attention.
Before I got ill, I was a breed specific legislation fighter (dogs). Did a lot of research. Lead 3 protest marches, spoke before hearings, and wrote about a thousand letters. I speak it wherever whenever I can. If those who are fighting can keep up w/ the fear mongers and bigots, one day we will catch up because our mouths are so big and because we are right.
With what we pay out in insurance, no one should have to be paying out of pocket w/ no coverage. This is criminal. Unfortunately, the only thing that might help is that money talks. If insurance cos are saddled w/ all this coverage, they will push for better tests, research and treatment. That may be the ONLY thing to kick them, other Drs and researchers in the rear. And finally, hopefully fresh new researchers will see the $$ signs and jump in there (if we don't go universal in the meantime).
Hoping, I've probably read your story, along w/ many others, so I don't remember your details. If you will point me to the original thread, I would like to read it.
btw, the LLMD I have found used to work w/ the huge Family Practice office of my PCP. My PCP says that some family members became ill w/ lyme. So he left FP and went to work w/ Dr R, (KC area) about whom there are posts on here. She is reknowned, at least around here. On those posts, people complained about the expenses -- folks are shelling out thousands of $$ per WEEK. With her office, he was working too many hours and charging too much money, so he left to devote the rest of his life to Lyme. I am told by his nurse and my PCP that he is passionate about Lyme, because it is personal.
I don't know the whole story, because he only sees patients once per week. I think he does research and is semi-retired. My first consultation for one hour will cost $160. After that, visits are $80. I can't do that, but if insurance will pay all but my co-pay, then I can try. Maybe I'll end up w/ a good referral to share, we will see.