Hi Reborn, welcome to the board!
Did you had a bulls-eye rash on your bicep? Although only about 50% of people who have Lyme ever get a rash, a bulls-eye rash is a definite sign of Lyme disease. The rash alone merits treatment. Lyme disease is a multi-system bacteril infection, the rash is only one possible symptom.
You are not crazy. Your symptoms sound very Lyme-like to me. Below is a Lyme symptom list. You can have any combination of symptoms.
When Lyme disease is a possiblity, 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 Many doctors do not understand Lyme and treat with outdated protocols.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. It is my understanding the ELISA or titer is the least reliable test and the one most doctors run first. 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.
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 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne lllnesses 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. He discusses antibiotics and doses starting on page 18. 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 M.D.
Hang in there okay? Good help is available.
Hi Reborn. It sounds like you are on the right track considering you had a bulls-eye rash years ago. I am so glad your doctor wants to help. It is always good to have other things checked also.
I recommend getting tested through IgeneX in Palo Alto, CA. The Western Blot test lists a series of numerical bands with a + - or IND rating after each one. Labs such as Quest and LabCorp do not list all the Lyme-specific bands that IgeneX does (I believe they do not list bands 31 and 34). Be sure you are tested for the co-infections also.
One of the tests for Lupus is an ANA. Some people who have Lyme have a positive result.
Hi Reborn. Which lab did your Western Blot test? Were you tested for co-infections? What meds and doses are you taking?
Lyme symptoms do wax, wane, and migrate. Going through treatment sometimes feels like one step forward and two steps back. Make sure you are documenting your symptoms daily. Over time this really helps to show patterns and how you are responding to the meds.
Lyme can affect thyroid, adrenal, and hormone levels.
Hi Reborn. In my opinion, to confirm or rule out Lyme disease it is imporatant to see a knowledgeable doctor. Many other doctors follow outdated treatment protocols and do not understand the unreliabilty of tests. You may want to consider making an appointment with a Lyme doctor now because it can often take time to get in. You can always cancel it later if you decide not to go. If the doctor is booked, ask to be notified of any cancellations. This may get you in sooner.
You are right that no one wants to be sick and/or take medication. If you do have Lyme, it is very important to learn as much as possible to ensure you are getting the best treatment.