Hi Mandy!
Your blood test results are most likely wrong, considering your symptoms. That's what happened to me until I had been on very strong abx for a full year - then I finally got a positive blood test!
There are several reasons why a person could have a negative blood test and yet still be infected.
*The blood test only looks at the immune system response to the bacteria (it looks for antibodies to the bacteria). The problem with this is that the Lyme bacteria is well known to suppress the immune system, so there will be no antibodies produced.
*The first order of business for the Lyme bacteria is to leave the blood stream and go into the tissues in our bodies where it can move around better - getting into joints, bones, organs.
*The
best tests are only designed to look for 4 or 5 different strains of the Lyme bacteria. There are 100 different strains in the US alone - 300 world wide.
It's easy to see why so many people get those false negatives with issues like that! It's actually fairly rare for someone to have a false positive test result.
The reason most doc's tell their patients to not go online to check into what they have is because they are afraid that we will learn too much. They quite literally prefer people to only trust them. One of the main reasons that Lyme patients scare doctors is because most of the time we know more about
the disease than they do. We have to though!! They aren't keeping up with the little bit of research that's being done on these diseases or the treatments that are having success at treating them.
The problem with trusting a doc that really doesn't know much about
tick-borne diseases, is simply because they don't know much! If a person went to a brain surgeon because they had cancer, the treatments wouldn't go so well. The same thing here. You need to be seen by a doc that has had ILADS (International Lyme and Associated Diseases Society) training. Why not ask your doc if s/he has completed this training? Find out how many patients s/he has successfully treated? What was their outcome?
Infectious Disease doc's aren't much help either. They believe that Lyme is very hard to catch and very easy to treat. There have been many very reputable LLMD's (Lyme Literate Medical Doctors) that have had to retreat those patients that went to see an ID doc first, or used their GP.
As for your questions about
your fingers - it could be very well that you are dealing with Lyme arthritis. I have it and my fingers are twisted and bent. My toes used to be as well, but with treatment my toes straightened out and my fingers aren't as bad.
You said you are a researcher at heart (me too!), please do your research on these subjects then! There is a whole bunch of really good info in our "New to Lyme? Start Here!" thread that sits at the top of the forum, with links, pdf's and more. There's even a post with questions to ask any doc that you are seeking treatment from!
I would also encourage you to read through some other sites that I think pretty highly of. These include:
www.personalconsult.com/www.drjoneskids.com/anapsid.org/lyme/www.lymeinfo.net/lyme.htmlOf course there are others, but I don't want to scare you off!! LOL!!
Oh, and a must see:
lymebook.com/blog/testing-diagnosis/misdiagnosed-diagnosis-mimics-great-imitator/