Chronic lyme and RLS

[collageartist52]

i've had RLS for over 40 years. Have been thru all the various treatment ideas posted here and elsewhere. My condition has been hellishly worse in the last 6-7 years. I have recently be diagnosed with chronic lyme disease and have read that lyme can contribute to RLS as it attacks the nervous system in many different ways. I believe that is true for me. Getting a positive lyme test cane be difficult. I had the symptoms, which could also be any number of other conditions. But i always tested negative, until recently. So if you have resistant RLS and live in a region where lyme is a problem, i would encourage folks to get tested! And maybe more than just once.

[fabPhilly]

I'm curious which test you used to finally diagnose it? Thank you.

[Madlegs1 in reply to fabPhilly]

Lyme disease tests are notoriously imprecise.

Having the Bullseye rash is the outstanding marker.

[collageartist52 in reply to Madlegs1]

So true! I had an engorged tick removed 7 years ago. Never had a bullseye. That would have saved me 6 years of declining health. At that time the protocol was to wait and see if lyme developed..my symptoms showed up a year later, but my tests were always negative.

[collageartist52 in reply to fabPhilly]

the positive test was done in canada, while i was visiting. I live in usa. My papers say that a 2 tiered enzyme immunoassay was used...that is all i know.

[707twitcher]

I suffered from Lyme disease for five years (and maybe had it for much longer). I suspect that the lyme brought on my RLS, although I can't be sure. The typical lyme test is called Western Blot IgG; the more accurate (and expensive) one is from IgeneX. The immuno-assay test is called ELISA - and doesn't test for Lyme secificially - it just tests for existing antibodies left over from past infections from any source. If you don't have significant antibodies (which might take a long time to show up after a lyme infection), medical guidance says don't bother with Western Blot of further testing. The tests aren't so unreliable as much as the US CDC guidance about how to interpret results is a joke. For some reason, CDC is not a believer in chronic lyme disease. Having lyme is a good preparation for RLS - another disease that the medical profession is woefully ignorant about. 😩

[collageartist52 in reply to 707twitcher]

thank you for this explanation. The word elisa rings a bell with me now. And they were positive specifically for borrelia burgdorferi. I did not present with a current lyme infection. I actually had a ruptured baker's cyst, but i asked to be tested for lyme anyway...as for the RLS, i've had it most of my life, much worse in the last 20 years. And much worse since that tick .

It's been a rough 6 years for sure.