Welcome to our community! I'm so sorry to hear all that you have been through so far - although it does sound a lot like what those with Lyme frequently go through.
Depending on what abx, the doses you were taking and for how long you took them, you may not have had enough treatment to actually put the first infection(s) in remission.
The other possibility is that you have a co-infection that stopped your healing. Babesia and Bartonella are frequently the culprit, but it also could have other factors as well.
As far as I know, there still isn't much evidence showing that spinal taps are a reliable way to determine if a person has a tick-borne infections.
There is another possibility is that you have been reinfected. With all kinds of insects - mosquitoes, fleas, and more - a person can be infected without realizing what infected them.
I would suggest that you read through our "New to Lyme? Start here!" thread - even though you aren't new to Lyme! It's packed full of important information, symptoms lists (as Lyme doesn't often travel alone!), helpful links and pdf's, and even a list of questions you can ask any doctor that you are seeking treatment from!
We also have a great search feature here so that you can search the threads for information that is relevant to you. I would suggest that you enter the search term "Lyme" before entering other search terms so that you search only this forum. Healing Well has many different forum that the search feature combs through.
For treatment options, you can choose to use abx (antibiotics), herbal, or a combination of the two. Many people have great success when using both abx and herbs. We also have many people that use herbs alone and are healing well also.
For information on finding a Lyme Literate Medical Doctor(LLMD) and/or a Holistic Practitioner in your area, you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although 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.
For further help in finding a LLMD, you can email our long time member, Dan's Mother at:firstname.lastname@example.org
You can also email Stephanie at: email@example.com
You can also go to: www.turnthecorner.org/
if you want to learn a little bit more about
You can also 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 will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.
"Absence of proof is not
proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name