[EasternShoreLady]

Hey All,

Been gone for a while but wanted to post this quick note to pass on some info I recently found out about that might help others.

As a background for those not familiar with my situation... have been having probs for about 10 years. Steadily got worse. Hand numbness gave a lot of probs especially at night. Migraines. Lotsa pain. Spasms. Etc. Was talked into a C5-C6 fusion. Didn't work. Kept getting worse. Had 4 years of ruling out carpal, BAH! . Was told I needed a right rib resection (removal) & scalenectomy. Got that done last March 5th over at Hopkins. Didn't help. Still not healed enough to use the arm much (annoying as all get out).

Finally said enough was enough, went out of my health network and saw a place that suggested getting a bunch of tests done that my primary thought was just a fishing expedition (had to go thru the primary to get the bloodwork done thru my insurance). Turns out that the "fishing expedition" landed a whopper. I have late stage Lyme's Disease, extremely high Epstein Barr Virus titers, and probably Babesia (redoing that test... was borderline so not sure if I do or don't have it). Really interesting part was that I've had 4 Lyme's tests before over the years and they all came back negative. I haven't been bit by a tick in probably 2 years at least. If I'd again gone only with the ELISA test that they usually do, they'd not have found I was infected because that one came back negative but the Western Blot test done at the same time came back positive for active current infection. Apparently my body wasn't putting out antibodies for the ELISA test to pick up. Figures.

Anyway... I'm just starting treatments. Will see how things progress. But as an FYI to y'all... my TOS doc at Hopkins who was one of the top docs in the country for TOS, was absolutely positive that my problems were due to that rib she took out. Needless to say, she missed it totally. From my point of view, since my probs were so difficult to pinpoint, had I known then what I know now about Lyme, I would have pushed hard for getting a definitive diagnosis before getting that surgery. The only silver lining is maybe my experiences will help others avoid going through the same. If you know you absolutely need surgery, don't hesitate. If they "think" you need surgery because they can't definitively tell and they're doing it as a "rule out", get yourself checked out more thoroughly on other fronts first. Even if you have to go against a bias of "fishing expedition" mentalities. Just like in real life fishing, the experts aren't always the ones that land the whoppers.

Much luck to all in their fight against their TOS demons!

Mary

[Dolfinz]

Mary.. I hope you get better and thank you for this !

Dolfinz

[Jomar]

I hope the Lyme treatment makes great improvements for you.
Keep us updated on how it goes.

And thank you for mentioning this - complete work ups really need to be done unless a very clear need for surgery is shown.