Infectious disease doc refusing to see me :(

Ive been waiting to get scheduled with an infectious disease doc and today I got an email from my PCP basically saying "just kidding, you don't have Lyme disease according to the CDC". She said the infectious disease doc is refusing my referral as I don't have Lyme according to the CDC guidelines. I already know on paper that they wouldn't consider me positive, but with my symptoms at least they would here me out. NOPE!! I was told back in December when I had my first Western Blot that even though only bands 41igg and 18igg came back reactive, they would still treat me due to my long history of symptoms and my history of being around ticks. I was on Doxy for 6 weeks..I had to space it out on some days because the herxing was so painful and made me feel like crap. After the full course, I felt like a new woman. That lasted for about a month. My symptoms came back full swing so I requested another WB which I did a few weeks ago. This time, it came back with 18igg, 41igg, 93igg and 23igm bands reactive. This is what prompted her to send me to infectious disease. Now I cant even get an appointment and shes agreeing with him. I wrote her a long email requesting a second opinion and that I get a test through Igenex. My pain has been so much worse this week. Its shifted from my knees to my calves and now I have pain in my arms, my hands and my fingers, which is new for me. I told her about the pain and asked her why my results would show more reactive bands AFTER treatment and if I didnt have Lyme, then why is anything showing at all?? I have read that Doxy will basically "stir" the bacteria back up and thats probably why the 23igm is now popping up. But I want her to answer these questions for me. I want her to have to dig for these answers. Im hopeful that she will listen to me. I mean this is how I got the test ran in the first place. I asked. Sorry this is so long ugh. But does anyone have an answer as to why I would even have ANY reactive bands if I really dont have Lyme? I would maybe understand if it was 41igg only, but what about the rest??

Most ID docs are worthless when it comes to lyme/coinfections, heavy denial and also adhere to a very strict narrow paradigm (incredibly flawed imo). Even the ID docs who do want to help and have some understanding of these diseases, well their hands are usually tied by their institutions, they cannot deviate from the CDC guidelines. If there is any way I'd suggest finding an LLMD/LLND in your neck of the woods, they are usually best bet since they have a better understanding of how to diagnose and treat these diseases. Not all are perfect but much higher degree of chance to get solid care.

If not there are a variety of herbal protocols (Buhner, Cowden, Zhang, Rawls) that have helped many patients.

Those positive bands are significant, 23 is specific for burgdorferi. /s-media-cache-ak0.pinimg.com/736x/a9/e1/2d/a9e12dee3a4e2f9fa17a745dd53fe395.jpg

Thank you all for your replies. I am currently looking into a LLMD here in my area, thanks to Girlie. I was just very frustrated when I got home today and needed to vent. How can they deny people treatment with all these symptoms and testing that shows at least something?? Anyway, Ill keep you all posted when I hear back from my PCP. Thanks again!!!

I had doctors tell me I had all kinds of things for 40 years - and I had tons of symptoms of these infections. If they are not Lyme literate, they simply won't understand. They are going off of the information that was presented to them (all 2 pages of it) from when they were in college! That information only told them that it was a nuisance disease, no big deal.

I would agree that the ID doc has done you a favor by not seeing you - otherwise you would have just gotten more Doxy for another 3 weeks and told you are healed (no matter how many symptoms you still had) most likely. That's the standard IDSA treatment for these infections.

You need to either see a LLMD, or choose an at home protocol started soon.