New to Lyme, need help finding a LLMD in middle TN.

Hi, I'm new here and new to the dx of Lyme, however I have been sick for four years following a tick bite. I was tested and told I did not have Lyme in the beginning. Over the next four years I would come down with just about every symptom from Lyme but no doctor would believe it so I trusted them and went along with it knowing what was making me so sick. Finally five weeks ago I was bit again but this time I developed encephalitis within a week. I spent two weeks in hospital, u dear went numerous tests only to be told they have no idea what caused this or why I am still neurologically deteriorating. They have me on prednisone to keep swelling down and dilaudid for pain, but I know this is Lyme this time because my head hurts terribly where the tick was embedded in my head, I had the conjunctivitis, fever and now diarrhea. Yet all Lyme tests are negative again. My doc is going to start treatment tomorrow with 100mg. Of doxy for ten days, just to appease me, but I am too far past a simple course of doxy, so I know I need to find a doctor who is familiar with Lyme and its co-infections. If anyone knows of any in the middle TN area I would appreciate it. Thank you

Thanks Girlie for your response. I did enable my email and hope there is someone on here that can help me find a doctor in Middle TN. I do have to stay on the prednisone right now because every time I try to come down on it the brain swells again and I begin to have hallucinations and meuromuscular problems along with speech and balance issue and the pain is what makes me grab for the bottle of steroids because there are now words to describe it when your brain swells! However, I know I playing with a double edged sword, I need the steroids to control the brain swelling, but at the same time it is suppressing the immune system and allowing for this infection to spread, which is probably while I am still deteriorating. This would be why I really need help finding a LLMD as soon as possible, so they can help me to start clearing the infection, so I can get off of the steroids. Also they are treating me with 100mg. of doxy twice a day, I know this is poor treatment, but they are only doing it to appease me. The problem is I was immune suppressed and taking steroids for years due to the first tick bite four years ago, which left me with terrible allergies that only steroids have controlled, so when I got bit this second time I was immune compromised and I do believe (from what I have read on line ) that my use of steroids is what may have caused the tests to come back showing negative, even though I have it. However, I can not get any doctors to believe it and they tell me that I need to stop using "Dr. Google" because they know more. Needless to say I have had it with the medical profession and just pray that I can find a LLMD to help me. Anyway, thank you for your response

Hi Sick4real,
Welcome to our community!! I'm so glad you found us!

You do have a good understanding of where you are with all of this! That's a good thing. No one is going to fool you into believing that you are fine without treatment or with not being treated long enough. The 200 mgs of Doxy a day is keeping the little buggers from replicating though, so do stay on it as long as you can until you can get in to see a LLMD.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​

You would be helping yourself out tremendously by starting to detox right away to help rid yourself of the toxins that have been building up as those bacteria die off.

The right LLMD will not only diagnose you clinically, but will be able to help you wean off of the steroids while treating the infections at the same time. You should be sure to have them test you for co-infections as well - particularly Bartonella, as conjunctivitis (pink eye) can be caused by Bart as well.


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I do have contact information for some LLMD's in your area - hopefully they are close enough for you to travel to.​ ​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 also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org/​​ to learn more about these infections.


​ 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. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.​​www.ilads.org/lyme/ILADS_Guidelines.pdf​​

And, as Girlie said, we're here for you!!

I know an excellent llmd in middle Tn. pm me at [email protected]