Expert: Carol - 8/13/2009

Question
I would like to know of a lyme dr. in the central florida area. I have chronic lyme and have been sick for 10 years. I was recently tested but it came back negative. so that dr. dismissed that I have still got lyme. what are your thoughts on the lab, Central Florida Research, Inc. ? They do an antigen test similar to Bowen tests. I am so sick all the time, hurt especially my legs and have unbelievable fatigue. Thanks for any input. so tired of fighting this ,......Jan

Answer
Hi, Jan...

I don't know anything about that specific lab, however, Lyme is ultimately a clinical diagnosis based on bite history (if the patient recalls one, not all do), history of symptoms and exclusion of other diseases. Then, there is the issue of co-infections which are other organisms transmitted at the time of the bite. A Lyme specialist would test for those.

To find a Lyme specialist, go to www.LymeNet.org and register. Click on Flash Discussion and then on Seeking A Doctor. Post there with your city and state and someone will email you privately with information. There is a policy not to post doctors' names on the site due to privacy issues.  You will see LLMD a lot on the site and that stands for Lyme-literate MD.  They are few and far between so be prepared to travel if you find one.

You can also go to www.lymediseaseassociation.org and click on the doctor referral button to the left. It requires a zip code to generate referrals.

All Lyme specialists are not created equal so I would advise that you try to get feedback on any doctor(s) you choose so you won’t waste precious time and money. As with any  doctors, there are some you’d want to avoid even if it means traveling farther.  Go on www.LymeNet.org and click on Flash Discussion and then General Support. Post something like: “Anyone see Dr. G in Wisc?”   Again, there is a policy not to post drs’ names on the site due to privacy issues and fear of harassment by mainstream medicine for treating Lyme patients. If you post the last initial and location, they’ll know who you’re talking about.

If you or anyone who reads this do not have insurance and/or cannot afford antibiotics,  see www.needymeds.com.  Apply even if you do not think you qualify.

For the entire Lyme and Co-infections Treatment Guidelines, go to http://www.lymenet.org/BurrGuide200810.pdf

Good luck and let me know if you need anything else.
Carol