repeated treatment failures. TICKED OFF
Hello. I was diagnosed with Lyme disease after 8 months of unbearable hell. It started with swelling in the soft tissue of all my fingers. It was diagnosed as Raynaud's, Chillblains Panniculitis, Lupus..you name it, I heard it. I developed what I thought was a horrible flu with a very high fever, a stiff neck and soaking wet night sweats. I developed rashes and migrating joint pains as well. I would also get hot, burning flushing in my skin and blurred vision. Finally, I found a wonderful LLMD and got the diagnosis of Lyme. I was bit by a tick a little more a year ago and just got symptoms a year later. Anyway, I began treatment in July with Doxycycline. This did not work at all! The next month I moved onto amoxicillin which actually worked better. The low grades fever disappeared. Then zithromax was added. I developed itching all over my body and did not know if it was a herx or a drug sensitivity so I stopped. Then I went on ceftin and zithromax.
This helped a little but I eventually hit a break wall. I wanted to start I.V. but this other Lyme doctor said I was not treated for all co-infections yet and Rocephin only treats Lyme. She said the nodules on my toes strongly suggest bartonella infection. I have a yeast problem too and love to eat sugar. (I am addicted). Finally, biaxin was added into the mix. Once I hit a break wall they decided to treat me with Rifampin and biaxin together. I believe what I had is a herx.
I fell so ill that I could not even make it to the bathroom. I honestly feel I have not improved much at all. I have been on antibiotics for 7 months now. I cannot get rid of the swollen soft tissue nodules on fingers or toes. I also have livedo reticularis, mottling of the skin. I got hot sensations on my skin and rashes wherever my clothes touch. What worked for you? Do you have any treatment suggestions for me? Should I give Rifampin more time? We also discussed plaquenil and tinidazole for the future. Please let me know what you suggested. I am also taking nattokinase, is that as good as lumbrokinase?