I've been sick since may 2007, went to many doctors. got diagnosed in nov. 2007. The first 8 months of treatment included abx. combos and some of Dr. buhners protocol for LD. I also tried levaquin (about
killed me) and also cipro for possible bartonella. I had a horrible time trying to tolerate the meds.
I did get relief of a very bad headache that I had for 4 months straight from the treatment but I was still very sick. My doc. at the time got burned out with me and said that she thought I had "post lyme syndrome". I think she just wanted to get rid of me and that did the trick!
Soooo I found an ID doc. that was willing to try IV rocephin. The office was 2 1/2 hour away and I had to get someone to take me back and forth. The first picc line kept leaking so I had to go back and forth several times and ended up with a second picc line. It was very stressful. The day before my second line was to be placed my son woke up with 3 EM rashes on his legs. I was devastated...my doctor treated him with about 3 months of amox. and he seems fine but my current LLMD is watching him closely.
Along with the IV rocephin I was on rifampin (by my request for possible bart.) flagyl, and who knows what else I can't even remember.
My arm started hurting towards the end of the 6 month and the picc line had to be pulled because of possible blood clot. I suggested bicillin shots and only got through the second one when my husband hit a nerve. It was horrible pain...
The doc. at the time was not a llmd but he was on my insc. and he tried and did the best he knew how. He was not into talking about or treating co-infections so I decided to see a natural med. doctor 5 min. from my house. We tried homeopathic and herbal meds including cowden protocol and some different supplements. It was the best that I had felt but I was still to sick to go back to work. He was very expensive and insc. did not pay for treatment. I could not continue to pay for it. I went for about 5 months. He was such a good doctor and was so posative all the time and tried very hard to get me better. I did not want to stop going.
During all this time I had applied for SSDI and had been turned down and I asked for a reconsideration, it was turned down also. It has been a long road trying to get this. I am now waiting on a hearing, it will take several more months....
The problem i'm having now is I have a very good LLMD (9 hours away) that I have been going to since last Nov. that is helping me with the disability but i'm not handling the treatment plan very well at all. The side effects are really bad and I am burned out on all the abx. . I am curriently going to start a new combo of meds for LD and am trying to tolerate babesia treatment...she really thinks I have this because of my reaction to the mepron art. and clynd.. I just don't know what to think anymore or what to do. I really need to be on SSDI and she is the only one that has been willing to help me besides my GP. He is willing to fill out the paperwork but does not treat LD.
I really wish that I could go back to the cowden protocol and natural meds. but I would surely loose my chances at SSDI. I hate that i'm in this position.
I have also been in 3 car wrecks in the past year (not my fault) that have added a great deal of stress to my situation. I have also been diagnosed with PTSD.
I feel lost as to what to do. I feel like everyday is a rerun.
I will stop here, I know this is a long post.
Thanks for reading....