Up until I had my third child in April 2007, I have been very healthy. I am now 37 years old and have 4 kids. It all started back in July of 2008 and has been going on since then. At first I had high fevers and different joints started swelling. I was told I had Fibromyalgia, then diagnosed with Rheumatoid Arthritis, next was possibly Lupus, which later was told "Rhupus" b/c I had some aspects of Lupus and some of RA but not all of either. I have had both my left and right knees drained many times, as well as cortisone injections in my left wrist, right shoulder and knees. I had tests done a few years ago because I had tingling in my left wrists and it felt like it was going to sleep all the time. They decided it was carpal tunnel. I have taken Cymbalta, Celebrex, Mobic, Plaquenil, lots of prednisone, and the latest has been methotrexate. I have also been going to the chiropractor and tried to get some relief of the pain in my neck, shoulders, lower back and right jaw. One day I went to the Dr. who said I needed to go to the ENT because I had an infected saliva gland which was causing an infection and pain in my jaw, however the ENT said it was a tooth that was infected so he sent me to the dentist, who then sent me on to the oral surgeon who pulled a tooth only to find as months went by the pain didn't go away and it's just supposedly TMJ. I am so tired everyday and really could stay in bed and sleep 24 hours a day everyday if I didn't have to get up and take care of my kids. I feel like my brain is not working and memory what is that??? My short term memory is so bad it is getting really embarrassing, I just feel dumb! Anyway, moving on, my husband was very persistent in getting me to have a Western Blot test done. I switched my PCP two weeks ago and after telling her my history I asked her for the Western Blot test. I had previous Lyme tests done but not the western blot. She agreed and I got the results back last week showing the iGM bands 23 and 41 are positive. She referred me to see an infectious disease Dr. After calling them they told me they would not see me that I did not have lyme as I did not have 5 positive bands and that anyone could have 1-2 positive bands but that doesn't mean I have lyme. She said she was a lyme disease guru and I would be wasting my time and money coming in there because they would tell me the same thing. After hours and hours of research over the weekend I do not understand why or how they can say I do not have Lyme disease. Every symptom I have and have had over the past 5 years is a symptom of Lyme disease. I was so excited to finally have an answer and thought that this would be something I would just go to the Dr. and they would prescribe something and everything would be better....however now I am so frustrated because it doesn't seem like there are any infectious disease Dr.'s out there that will treat me based on my western blot test.
I understand that a LLMD is the best doctor for me to see, however the only one I know of in the Indianapolis area is not accepting new patients and are on an 8 month wait.
Does anyone in the Indianapolis area have someone they recommend?
I had been taking Methotrexate which had not helped me at all however my Rheumatologist said I should give it some time....would the Methotrexate in my body prevent other bands from showing up on the Western Blot test? Do I need to have the Western Blot test repeated?
Thank you so much in advance for any help and advice, I really appreciate it!
Post Edited (jlkrug) : 6/5/2013 6:33:34 AM (GMT-6)