Hello. Well I am new to this and have been reading a lot of posts. I have been sick for 2 years. I do not remember being bit by a tick. I did however have a quarter sized "bug bite" on my forehead under my bangs. It grew and I had a fever. Went to my PCP and was dx with "an infected bug bite". no rash. Ended up with Bronchitis that lasted 5 weeks, then joint pain, chronic UTIs. Put on Cipro, Levaquin, and Zpak SEVERAL TIMES. Tested for Lyme Disease ELISA 5 times and of course negative. Started with nausea, vomiting and daily fevers, later shortness of breath, chronic fatigue, joint, muscle pain, headaches, weakness, insomnia. Im sure I have forgotten some of the symptoms. I have seen 22 different doctors. My bloodwork was so crazy on and off doctors thought I had Leukemia, Lymphoma or some other cancer. I had xrays, CTs, MRIs, PET scan with positive results, however lymph node removed from groin and thyroid nodules biopsies NEGATIVE. Bone marrow biopsies-negative. All GI workups negative. I thought I was going crazy. One of the last doctors I went to in another state where they do research on Lyme told me THEY do not believe in Chronic Lyme Disease and because MY KNEES WERE NOT SWOLLEN, SHE WAS 100% SURE I DID NOT HAVE LYME DISEASE. Finally was given the name of a Lyme Disease specialist who ordered the bloodwork no one else would and it was positive for Lyme Disease and Epstein Barr latent and lytic. I never had Mono!! I started probiotics VSL, ortho 225, sacchrob, glutalomine, nystatin swish, Doxy 5mls twice a day 4 days on 3 off. Tomorrow I add Mepron and the following Monday I add Clarithromycin. My meds are liquids or capsules I can dissolve in liquid due to my nausea and vomiting that continues. Of course I have Phenergan, Zofran and scopolamine patch. I have been out of work since May and lost my position from a job I LOVED. LYME DISEASE HAS RUINED MY LIFE. I'm newly remarried and feel like a burden. My husband has been wonderful and very supportive. he bought a hot tub for me which feels great while im in it. I wish the CDC and AMA would recognize that chronic lyme is a true disease and change the guidelines and I really wish insurance covered all of this. My meds were covered, but Im worried that if I end up with IV meds none of that will be covered. Thank you for listening. Any advise welcome. Im deathly afraid of going through herx reactions. when does that start?
Post Edited (kimbo62) : 7/27/2015 12:44:25 AM (GMT-6)