Hi Manzanita2 -
Welcome to the forum! Sorry you're here - but glad you found us. The others have shared really good info. Please spend some time reading through the New to Lyme? thread at the top of the page - this will help orient you to the Lyme world, what symptoms might be associated and explanations for why the testing is so unreliable and what you might consider for next steps.
Also - in response to the history and symptomology you shared - here are a few thoughts:
Please call your MDs and ask for copies of your ELISA and Western Blot tests to be sent to you. There may be good info in them that can help answer some questions. Please share them when you get them.
The testing methodology is controlled by the CDC, but it was developed strictly for disease surveillance purposes, not for diagnosis. A "positive" result requires a minimum number of specific bands but the tests are 50% unreliable. The Lyme microbe has the ability to disable the immune response but the tests are serology tests so they rely 100% on a highly functioning immune system.
Most people with the Lyme microbe can't produce a reliable immune response for an accurate test result and even if they could, it's ridiculous to be required to meet such stringent requirements for band reactions.
Unfortunately, this creates a lot of problems for the patient because many--most MDs don't understand the correct way to test or interpret the results to get the best results and only a Lyme specialist can truly develop a clinical evaluation for you.
Part of an accurate clinical diagnosis will consider your exposure to ticks or an endemic area for Lyme and symptomology. Most MDs will tell you "there's no Lyme in AR!" but there IS. Traveler, one of our Moderators is from AR and can verify Lyme is in AR. A specialist knows that most people don't produce the Erythema Migrans (EM) or bulls eye rash and that your symptoms could very well suggest Lyme & coinfections.
Also, fibromyalgia, while a recognition of very real and horrible symptoms, is just a name for those symptoms. For decades, these symptoms were ignored and the victims of them ridiculed (mostly women) but once Big Pharma was able to develop drugs to address the symptoms, "fibro" became real.
That's great... but the system now completely fails the patient by not investigating the cause of fibro. The body doesn't just start acting up like it does to create these symptoms for no reason and the longer the symptoms are masked while the underlying infection continues to damage the body, the larger the problem grows. Most Lyme pts on this forum were also told we have fibro. The fibro symptoms are generally caused by an underlying infection, and for us that's Lyme & Co.
Please email one of our top mods Traveler
for a specific list of Lyme specialists in your area to consider. I'm also a mod but not around as consistently but will help however I can.
Here are a few more resources Traveler likes to share:
You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74
You can email the Tick-Borne Disease Alliance at: email@example.com
ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/
You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php
Please don't hesitate to ask any questions that come up!