I've already found some great resources here on the forum and have looked into a few of the names on the www.LymeDoc.org list and the Lyme Disease Associate search. I've also made an inquiry via the ILADS Doctor Search, which I'm waiting to hear back on.
I was wondering if anyone here could make a recommendation based on personal experience? After going to countless doctors the last few years, I'm awfully hesitant to pick a name off the list in attempts to get the right testing done.
A little about
my story - I was bitten in late summer of 2013 (age 25), but didn't get immediately sick, so never really thought much more about
it. Started having abdominal pain and pain in the upper legs around November and December, but since it would come and go, I foolishly ignored it and didn't go see the doctor until spring of 2014. Around this time, I started developing more and more symptoms...tired all the time, stiff, the beginnings of frequent muscle twitches. The doctor did some tests, but everything came back fine.
By that summer of 2014, I was having numbness in the hands and feet, brain fog, GI symptoms, and the pain had now migrated to just about
every part of the body. My PCP had me seeing a Gastroenterologist, a urologist (for the pain in the lower abdomen, groin an upper legs) and a Neurologist. The only one I continued to see was the Neuro (not sure why). Had MRI's on the brain, cervical spine, lumber, nerve test after nerve test.
Never had eye issues until 2015. Started having blurriness and eyelid twitches, but the eye doctor says everything was and still is fine.
The Neuro most recently said I probably have fibro and should just take medication to minimize the symptoms(for which I've tried about
5 or 6 different medications that have all done nothing).
So all these years later, I'm still lost. At my request, my PCP did do a basic Lyme blood test back in 2014, which came back negative. At that point, I just accepted it and tried to look elsewhere. However, now after hearing so many stories on here and elsewhere about
basic tests coming back negative at first, I'm not so sure. I'd really like to see a LLMD who will do all the appropriate testing to either rule out Lyme or if diagnosed, get me started on the proper treatment.
Didn't really mean to type all that much, but it was good to kind of get it all out
. Thanks for reading, any help or advice is greatly appreciated.