Hi patsie, welcome to the Lyme board!
Which lab did your Western Blot test? Quest and LabCorp do not list all Lyme-specific bands on the Western Blot. No test is completely reliable, and results can vary by lab. Many people who have Lyme do not have a CDC positive test. The CDC requires several bands to be present for the test to be positive. Lyme doctors usually look at which bands are positive, some are specific for Lyme. Infectious disease doctors are not usually the best to see for Lyme disease unless they specialize in it.
Many people are bitten by ticks without knowing it. They are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places.
Some people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS. Below is a Lyme symptom list. You can have any combination of symptoms.
When Lyme disease is possible, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress.
It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. You can call this lab at 800-832-3200 and order a test kit. You take it to a doctor who is willing to draw the blood and send it back. The results will be reported to the doctor who sent the blood in. Band 41 is often the first band to show.
If you need a doctor recommendation, you can email me at firstname.lastname@example.org To confirm or rule out Lyme disease, I believe the most important thing you can do is see a knowledgeable doctor.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner.
I hope you can get answers soon.