Hi LittleJack, welcome to the board!
I am sorry you have been sick for so long and unable to get help. People on this board can understand how your feel. Below is a Lyme disease symptom list. You can have any combination of symptoms.
It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Many people who have Lyme do not test positive by CDC standards which require several bands to be present for the test to be positive. Lyme doctors look at which bands are positive--some are specific for Lyme. Which lab did your Western Blot? Regular labs such as Quest do not list all the Lyme specific bands.
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. Have you been tested for these?
If you need a doctor recommendation, you can email me at firstname.lastname@example.org
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.
Hang in there okay? Good help is available, and you are not alone.
Hi LIttleJack. I hope to be checking my email tomorrow. Are you close to NJ?
You can call IgeneX at 800-832-3200 and ask them to send you a kit for the tests you need. You take the kit to a doctor who is willing to draw the blood and send it back. You do have to pay for it up front, but you can submit the bill to your insurance company for what they will reimburse. I believe the lab will advise you to mail it back closer to the beginning of the week so they get it before a weekend. IgeneX lists two more Lyme specific bands than Quest does.
I think you are on your way to getting the help you need.
Hi LittleJack, I am happy to help. I know things seem overwhelming right now, but it will get better.
There are some Lyme doctors who treat using traditional and alternative protocols together.