Geez, Brian, I thought my case was bad!
Weird thing is I had meningitis, Bell's Palsy, high temp, and the rash as presenting symptoms, but the test was negative so they didn't even want to treat me at all. I had to fight like hell just to get a script for doxy. My doc told me he doesn't believe in Lyme, or at least that it is extremely hard to contract. Time to find a new doc, I guess.
There's a lot of bad info about the disease as a result of the power play for a vaccine when Lyme was first recognized. A real good (and scary) book about the whole thing is "Cure Unknown", by Pam Weintraub.
http://www.amazon.com/dp/0312378130?tag=fw-source-gs-20
when Pam Weintraub was writing this book she came to my house to interview me. I had some damning info on how some docs at Yale were conflicted and corrupt over this illness, potential patents for vaccines, crooked insurance i.m.e. reports, etc. And I had the best kind of evidence - I recorded a video of a meeting featuring many of these corrupt doctors having candid discussions and it ended with the head of Yale's Lyme Disease Clinic actually chasing me and my son down Cedar St, New Haven in front of the School of Medicine. He was asking then demanding what I recorded be given to him. I didn't give it. Talk about surreal events in one's life. Yale's Lyme Clinic closed soon after, after running for13 years.
I also had Bell's palsy early on and Lyme encephalitis. The vast majority of people who have chronic Lyme have central nervous system involvement. Once this bacteria crosses the blood-brain barrier into the CNS it can cause havoc and becomes very difficult to treat.
Regarding your test being negative, there is no gold standard test that can tell definitively whether or not someone is actively infected with LD. Well, actually there is one. If a tissue sample is taken from the outer margins of the initial rash, there is the possibility to culture the spirochetes and if any are there, this would be certain evidence but for the bacteria to be in the exact sample taken is very hit or miss. That culture test is only avail at the time of the rash and, frankly, it's very seldom done because of the low yield and that the rash, itself, is a tell-tale sign for Lyme. no further testing should be needed.
because these tests are largely unreliable, LD is a clinical diagnosis. Someone who presents as you described above following a tick bite, that should have been an easy one for your docs.
the blood tests for Lyme are indirect tests, simply meaning they are not looking for the bacteria, but rather, they are looking to see if your immune system recognizes this bacterial invader, and, if so, how strong the response is. An ELISA test is for screening and can be (should *always* be) followed by a western blot test which is more specific for trying to id outer surface proteins of the spirochete. Some bands are highly specific and some, not so much, a couple can even have some cross-reactivity with conditions like gingivitis, pinta and yaws (other spirochete illnesses).
There are many reasons why a person with LD can have neg test results. Here's three well known examples:
1. testing was administered too early not allowing enough time for a measurable immune response to be in place. This could take up to a month following infection.
2. if the person has had a history of taking meds that can suppress immune response.
3. The immune cells that the tests are looking for are doing their job, binding to the antigen (the spirochete) and, therefore are not freely circulating in the bloodstream and unable to show up on the testing.
Your doctor said he doesn't believe n Lyme. I've run across a few like him. What he says makes no logical sense; I would end my relationship with him.
I'm a little passionate on this subject (can you tell?

)
I've seen quite a few people's lives ruined by LD, incl many kids. A friend of mine, Kevin Smith, from Fairfield, CT shot himself in the heart to get away from his Lyme disease pain. He was as tough as nails, a CT lobsterman, one of those guys who when you smacked him on the back it was like you were hitting granite. The reason he shot himself in the chest was so his brain might be used for Lyme research, as he requested in the note he left.
I know I've gone way far afield from being pool related, so I'll wind it down.
It's a big problem here where I live (even named after Old Lyme, CT, the town where it was first discovered). It's also endemic in many other parts of the USA and Europe.
if anyone has any questions on this subject, feel free to pm me. Out of necessity I've learned quite a bit about this particular illness. They've even had me give talks on it for staff at local hospitals.
now back to regularly scheduled programming.
best,
brian kc
P.S. The human Lyme vaccine, named LymeRix by Glaxo Smith-Kline was a disaster and was withdrawn from the market after quite a few people became very ill, some crippled, from taking it.