Hi Dreamwalker,
While I'm sorry you have a need to be here, I'm glad you found and joined our community!
If you haven't yet, please do read the "New to Lyme" thread, as it's packed full of helpful information.
I actually got Lyme in northern Idaho for the first time, at the age of 7 - along with a whole host of other infections.
A CDC doctor is not who you need to see, you need to see what is known as a LLMD - Lyme Literate MD. We keep their names private because their views (backed by good,accurate science) are very different from that of the IDSA (Infectious Disease doctors) and that of the CDC views (which is 'cherry picked' information, not accurate) and so, the LLMD's are being persecuted and brought up on trumped up charges in order to hamper or close their practices. It's a real mess out there!!!
For information on finding an ILADS (International Lyme and Associated Diseases Society) trained Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.
You can send me or Girlie an email by clicking on the screen name or the small blue envelope under the screen name. We may have contact information for some LLMD's in your area as well. Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your
location.
You can start a new thread titled something like "Looking for LLMD in the
(insert the nearest larger city & state) area". Members can email you about
the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.
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 protected]
ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/
And
www.LymeDoc.orgYou 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.
Now, as far as your tests that you have already had, Band 23 is very specific for Lyme (Borrelia), and nothing else will turn that band positive, so there's no doubt that you have Lyme, and if your symptoms line up with Lyme symptoms, then there's little doubt that you need treatment.
I've had the misdiagnosis of MS due to my symptoms and brain MRI's as well - but don't be fooled. That Band 23 is what makes the difference, and it's really quite common to have several misdiagnoses before finally getting the Lyme diagnoses - and there may be other infections that were passed at the same time as the Lyme infection was, as this is the most common thing seen.
Keep reading, keep asking questions!!! We are here to help as best as we can!