Numbness/tingling from lyme OR thoracic outlet syndrome?

Anyone ever heard of thoracic outlet syndrome? It’s an impingement in nerves / arteries (in my case just nerves) anywhere in the thoracic outlet region. I was diagnosed with this a few years ago and had two surgeries from a top doctor to correct the issue and a few years later I have no improvement whatsoever and the doctor doesn’t have any explanations. Basically, if I lift my arms or do anything overhead like just brushing my teeth, my arms go numb in 10 to 15 seconds, which eventually will lead to tingling but the type of tingling you get after your foot/arm goes to sleep and wakes up.

I was thinking people with lyme and coinfections also have numbness/tingling as a symptom right? Could this and thoracic outlet syndrome be related in any way?

I always dismissed my numbness stemming from lyme and coinfections because the numbness only occurs positionally when I raise my arms. I figured people who have this symptom from lyme and coinfections have it all the time, wheres as I only have it when it’s inconvenient for me like doing tasks, etc.

But given the surgeries didn’t work at all and the doctor doesn't have an explanation, I’m now wondering if this could be a possible symptom from lyme, babesia, and bartonella that I have. Thoughts? Keep in mind, it's only positional.

Post Edited (cppoly) : 6/26/2019 6:30:33 AM (GMT-6)

I had versions of that. Inflamed tissue, muscles and nerves combined will do this.

for me its a vasodilation thing mixed with some endocarditis and mitral valve prolapse. the ekg showed right bundle branch block . on echo the valve did look inflamed said the tech so high salt intake for the pots adtenal portion with chewing raw licorice for bp ...at one point llmd recommended inhaled aldosterone from hong kong if i couldnt stand .... avoid vasoconstrictors , heal bart and the endothelial will calm down ...

cppoly said...
I've seen several doctors for it and many just aren't educated properly on it. I don't have a cervical rib. But I did have my first rib removed on my left side and also had pec minor release surgery done.

An amazing doctor for this is Dean Donahue at Massachusetts General. He also runs a special CT scan with contrast and is able to pinpoint flow restrictions/blockages which I’ve found is the most advanced testing (normal xray/MRI won’t pick much up). He also is very thorough with the physical exam and could pretty much tell if you have it or not depending on what he sees.

But the most curious part is that I’ve had the major causes of blockages removed (at the rib and pec minor) and I haven’t had any improvement whatsoever which has me thinking about lyme…

Sounds like a good one. What kind of Dr is this, Nuero or vascular surgeon?

Its frustrating how you can read of different health tests and treatments ect but usually cant find a Dr in real life who knows it. Unfortunately, As you know, with lyme nothing is the usual.

Keep in mind, normal people have some degree of "cut off" with arms in the air, some get hospitalized after sleeping with arms above their head. Lyme can turn small iritations into big ones. Have you looked into nerve glides? Google / you tube it.

He's a thoracic surgeon, one of the best in the country (trust me, I've done lots of research on this before lyme). There's youtube videos out there of him as well. One of the best well mannered doctors that takes time with you and answers all your questions.

girlie - nope, not even Dr. Donahue had an answer and I wasn't going to search for anyone else's opinion since I highly value his. Although to be fair, he wanted to repeat another CT scan with contrast to see if there are any other areas of blockage. But, at this point there's really no other surgeries he could offer me so I just gave up on this.

One of my first symptoms was POTS and then high heart rate with very little exertion. I than began noticing tingling and my limbs falling asleep if i rest against them. And it would not take much time at all less than a minute. At first I thought it was due to metroprolol heart med that lowers the heart rate and blood pressure. I finally got off that med but still had the tingling falling asleep issues. Started on abx mostly for babs and that cleared up the air hunger, but now I think the tingling got worse. Maybe bart ramping up? Anyways now if I raise my hands above my head for 30 seconds they start tingling and falling asleep. It sorta feels like the blood is just draining out of them. I don't have any tingling or numbness if i sit in a chair unless I'm resting my arms on my knee area. Then my legs will go numb but it will take longer maybe 3-5 minutes. I do think it's bart causing this. I recently tried rifabutin and I never felt any kind of herx like that before. Also stopped that and tried CSA even with a small dose 30 drops so 10 of each I felt a similar herx just not as bad. And I took cryptolpsis before so I'm pretty sure it wasn't that. Most likely the side acuta.

I had an ultrasound in the thoracic area but they said it was normal. Do you feel any discomfort in the area?