I am posting this on behalf of others that may be fighting the fight similar to me. There is hope! (but I am still skeptical)
I finally rec'd a Lyme diagnosis yesterday after 9 months of my body melting down. I've noticed there are generally two reactions to a Lyme dx: "No, it can't be" or "thank God". I am in the thankful crowd as the only dx being pursued by my local medical pro's is ALS.
I have begged for referrals to rheumatologists, endocrinologist, infectious disease specialists, or anyone that would be willing to look at my entire health profile. I was just told that my bloodwork is unremarkable and my problem was sleep and anxiety. 7 doctors later they had me convinced that I was crazy and would likely die of ALS.
I am still concerned about ALS. I have symptoms that point to it: twitching, brisk reflexes in the knees, and muscle tension. My neuro hasn't diagnosed me with ALS, but says he's concerned and wants to keep watching me. That is important, but after 9 months I have no weakness and my symptoms keep changing. And I'm learning that my health issues of the past 4 years aren't just coincidental.
My top complaints have been muscle pain, tension, and fatigue, for 9 months straight with no relief. I have had this same complaint that would come and go over the past 4 years but it never lasted long enough to impact my quality of life. I have also had or have memory issues, tinnitus, sound sensitivities, headaches, night sweats, severe unexplained gastro issues, carpal tunnel, cubital tunnel, low heart rate, and on and on. I have a long list of other weird things, nothing that fits an objective test.
In the past 9 months I have been to the ER twice for swelling of the upper body and face, totally unexplained...looked like I was beaten by Mike Tyson. I developed carpal tunnel almost overnight and have had to have surgery to repair it, including cubital tunnel. I was diagnosed with lumbar radiculathopy.
I have always suspected Lyme (even after 3 failed ELISA tests), so I got a friend Dr. of mine to sign off on an Igenex test (my regular PCP wouldn't). I got the results this past September and they came back negative sending me further down the rabbit hole. I never even looked at the actual report until last week. I saw that I had two IND bands specific to Lyme and ++ on band 41. It didn't take long to research this to discover that it points strongly to Lyme. And my Bart test showed some reaction, so it wasn't conclusive and indicated I may have Bart as well.
Short story from here is that I was able to quickly get into a highly respected LLMD the very next day. I had tried him earlier this year and it was a 4 month wait, I happened to call after a cancellation and after hearing my story they wanted to see me...that was a blessing. It didn't take long for him to declare it's Lyme, said my twitching is not always common but it happens often enough and I shouldn't worry about it.
I have tried protocols that included herbs, diet, magnesium, vitamins, etc. This certainly helped my gastro issues but not so much my muscle problems and fatigue. Now I am on an aggressive antibiotic protocol in addition to diet, enzymes, vitamins among other things.
I now have hope that this can turn around. I know there are stories of folks where it didn't, but having someone on my side has certainly lifted my spirits...I'm not giving up yet. If you have a similar story I'd love to hear from you, b/c honestly I am still having a hard time reconciling the fact that my muscles hurt all the time and I twitch - I always thought Lyme was about waxing and waning...or was that early on and now it's locked down for good until it's gone? and did I mention that I twitch alot...lol...pray those antibiotics can get that under control soon so that I can get ALS out of my head!