AboutCarol Expertise I can answer questions about Lyme disease and recommend websites where one can find good, up-to-date information. I can also tell you how to find a Lyme specialist which is critical if you or anyone you know suspects that he or she may have Lyme disease. I can, also, provide you with a symptoms list.
Experience I suffered for 2 years with a bad case of neurological Lyme disease & finished a 37-month course of antibiotics in March, 2007. I went undiagnosed for 2 years, & saw a total of 14 various doctors and 'ologists. I attended a two-day Lyme conference in the spring of 2005 and I keep myself current on the topic of Lyme disease.
I quickly learned that YOU CAN HAVE A FLAMING CASE OF LYME DISEASE AND STILL HAVE NEGATIVE TEST RESULTS! It is essential for anyone who suspects that he/she may have Lyme disease to be tested for the co-infections that can occur with it. Only a Lyme specialist can perform these tests and make these diagnoses.
Question I'm very concerned. I have finally been diagnosed with Neuro-Lyme. I have been ill for 6 years and live in MD. I have been unable to work or care for myself during much of this period. I had to go to an environmental physician on the Eastern Shore to get a diagnosis because my primary care physician refused to give me a western blot because my Elisa test was negative. I'm worried that my current LLMD isn't treating me aggressively enough. I'm having so many cognitive issues. Yet I can't find one doctor in MD who is taking new Lyme patients. I want to get a second opinion, but don't now where to turn. I'm losing my ability to spell, understand directions, concentrate, etc. In your case do you feel IV therapy was necessary to regain your health? Did you feel time was of the essence? My LLMD says we have time. I tend to think the sooner the better. Can you offer any advice?
Answer Hi, Julie...
I don't know who you are seeing or what protocol you are on so I can't comment a whole lot on what I think you should do.
I did start out with IV therapy for 8 weeks along with over a year of Zithromax and Flagyl, about 200 Bicillin shots, plus Ceftin, Rifampin, Biaxin and Minocycline always in combos of two. This went on for 37 straight months.
It is tough to get the Lyme diagnosis as I saw 14 doctors and 'ologists in three states. It's just ridiculous and imo, criminal
Why don't you email me directly and we can talk more about what's happening with you. I don't post doctor names or info on public forums out of respect for their privacy.
