Posted 8/22/2011 4:54 AM (GMT 0)
Thanks for the thoughtful reply Lymester. What I meant about the fees, east coast vs. west, was that many doctors on the east coast, from what I hear, treat Lyme as part of their normal family or internal medicine practice. They know about the disease as lots of folks have it, but here it's not so common. I'm sure you are right about seeing a well known LLMD, though, they probably cost a bundle where ever they are and probably have patients from around the globe. Today I watched the movie Under Our Skin, so got a sense of what some doctors have been through. Does your insurance pay for your practitioners fees? Or is it all out of pocket for you? I'm trying to wrap my head around paying a huge fee for medical insurance on top of the expensive LLMD visits. Since I'm new to this, don't know what to expect and also don't know how I'm going to pay the expenses if insurance won't cover some of it after the deducible is met. Would love to talk to you more specifically, perhaps through e-mail, as I'm trying to be nonspecific and stay within the rules. I don't know if people can chime in with what typical llmd visits cost. I've asked 5 offices locally. Don't know if I am allowed to share my findings.
My symptoms began a week after getting two tick bites while doing research in a forest in MA. (By the way, there were ticks everywhere, in my room, on my computer case, inside the research center... beside in the forest) I flew back to WA, went to bed and had intense leg pain. Oddly it migrated and was not always in the same place. Called my internist right away to rule out Lyme. He was busy, saw his partner. After the visit he said he knew nothing about Lyme and wanted to do a bunch of tests looking for other things. Told him I just wanted to rule out Lyme, as I knew it had to be treated asap. He wrote a prescription for 10 days of amoxicillian and told me not to take it, that the infectious disease doc would be back on Monday and he would ask him what to do. On Monday he called and said "do not take the antibiotics". And if I wanted to, I could have a consult with the Infectious Disease doc. I thought -- why would I go to see the ID doc if he doesn't want me to be proactive and have a short course of antibiotics to be prudent? Normally my doctors push antibiotics on me as I travel to remote places in the world doing research and they want me to be prepared in case an infection occurs while in the bush. Suddenly, though, none of my doctors would give me antibiotics once they heard "Lyme" -- and I called every doc I knew. Tried to find a Lyme doctor without success. Doctors of friends on the east coast would not give any comment as to what to do, or who to see. Finally, not knowing what else to do, I saw the infectious disease doc and asked for a western blot. The lab told me they were drawing the western blot, but when test came back and the doc had ordered the ELISA instead. I told him it often had a false neg. and he said -- no, that's protocol -- the western blot could not be done unless the ELISA was positive. End of story. He assured me I did not have Lyme and if symptoms continued to go back to my internist (who knows nothing about Lyme). I did take the 10 days of antibiotics 5 weeks after the bites. When I learned I needed another 4 days worth, at least, the doc would not give them to me. I asked him if it were him and he had the option of being prudent and taking 4 more days of antibiotics or possibly spending his life in a wheelchair, which would he choose? He said he would NOT take the antibiotics.
Pain had migrated into my spine, neck, shoulders, arms and hands. Walking became more challenging. I've had vertigo like sensations when I lay down or close my eyes. I stumble and fall against walls when I get up in the dark. Strange taste in my mouth. Exhaustion. Some days walking is tough. Have recently developed nausea and headaches. The llmd I saw said I was textbook and the clinical diagnosis was that I have lyme and likely co-infection. Test results to come in this week. But antibiotics can only be given if I test positive I was told. I'm normally a very high energy, athletic person, but now I don't recognize myself. I've been watching myself go down hill, have been feeling a sense of desperation to get antibiotics started. Feeling out of breath is a bit scary. Yesterday I called the doctor on call when I was short of breath with a lot of pressure in my chest. He poohooed lymes and llmds and told me if I didn't have the bullseye rash not to worry. And by the way, how did I know I was even bitten? Though I had ID-ed one of the ticks under a scope he as much as said a deer tick cannot be confirmed unless a doctor does it. Amazing. The controversy I sense has been a startling eyeopener. Had no idea the word LYME would bring up so much defensiveness in the medical world.
I've been very lucky to meet someone from a far who has lyme and can advise me. He directed me to this site and has given me the most incredible support. I'm so glad to be connecting with all of you.
I have a lot to learn and am not making any judgments about practitioners. Am just looking forward to learning from all of you....
Yesterday was 3 months since my second tick bite, had to believe it has taken this long just to get tested.