Saw some of you had some Lyme experience, so I thought I would throw this out there. My husband has a non-diagnosed neuromuscular disorder. He has had every test you can think of. His Lyme came back negative last year, but some of the symptoms fit well with chronic Lyme (he is getting retested next week). We live in a hotspot for Lyme. Major symptom is muscle pain, he also gets numbness/tingling in his feet. Pain is worse in the morning. Also insomnia, but gets sleepy in the afternnoon, irrititability, trouble focusing, trouble with word finding, etc. He doesn't recall the typical rash, and doesn't have the knee arthritis that can occur with Lyme. NSAIDs don't help, neither do the typical drugs for neuropathic pain (Lyrica, SSRIs, etc.). What do you think?
You probably want to post this question on lymenet.org, on the discussion forum. The folks on lymenet.org will be very familiar with the individual lyme infections (Lyme, basesia, erlichia, bartonella, etc.) and their specific symptoms.
Also, the only really trustworthy lyme tests are the expensive ones that you pay for out of pocket, such as Igenix Western Blot and now the latest-and-greatest Spirostat, which uses dna sequencing.
These are the gold standard for Lyme detection, and if you aren't using them, you really don't have an accurate picture. If your doctor isn't using these tests, get another Lyme doctor.
Sounds like my symptoms. I know there's a Lyme doctor (think her name is Ann Corson) in PA, but I'm fairly certain she doesn't take insurance.
Other posters are right. Go onto lymenet.org and ask for advice and a doctor referral.
I was diagnosed 7 years ago. Almost all the symptoms are gone (about 95%), but it was a long treatment. Good luck. You are your own best advocate. Don't give up, don't let them tell you it's all in your head. The regular tests are almost worthless and don't get me started on infectious disease doctors (not all, but enough to be memorable.)
I would recommend he get tested for Babesia ASAP. I have had chronic Lyme since 1992, and in 2008 I also got Babesia. The symptoms I had are almost the same that you describe, except I also had the numbness/tingling in my hands as well. The disease likes to "settle" in the extremities. It also causes near paralyzing fatigue, esp. midday, like you are walking in quicksand. I had two courses of very heavy duty antibiotics to shake that crap out of me (and then weeks of Doxy), but I still have aftereffects.
A doctor I highly respect has told me that a lot of people who think they have chronic lyme actually have fibromyalgia or another chronic pain condition.
Personally, nobody has ever told me what makes the Lyme bacteria so incredibly resistant to antibiotics (well, nobody has given me good solid scientific reason).
Please consider ALL the options before committing yourself to long-term, hard-core antibiotics.
I was diagnosed with chronic lyme until I came to an internal decision to trust the Westerns that had come back negative and get off the abx. Boy was I glad to get off those pills (even after a week of treatment) and I've never looked back.
Just my personal experience with a scientific background.
Edited to add: please see a variety of doctors, get educated (NOT just internet opinions) and make your own call. If you'd like, I could send you some peer-reviewed articles about Lyme.
Last edited by ClassAction; Nov. 12, 2010 at 12:00 AM.
Reason: one more thing to say!