Originally Posted by lilo55

After being on Doxycycline for a month-- with certain good results-- I did see a sports med doc who diagnosed my shoulder/neck/arm pain as TOS and not Lyme.

Both he and my PCP really doubted Lyme when my blood test came back negative. My PCP had me stop taking Doxy to see how I would feel. I was fine for about a week (except for the lingering TOS pain) then..... all over nerve pain, tingling, pin-prick sensations, muscle pain and twitches slowly started to return with excruciating TOS pain.

I woke up one morning, lost my balance, careened across my bedroom and slammed into a wall. Long story short, I also came down with a bad migraine, vertigo....buzzing in my ears. I could not walk or think properly.

My sister immediately whisked me off to an infectious disease doc who is also an LLMD. He took one look at me, carefully reviewed all of my symptoms for the past year and said...."you have Lyme disease".

He explained that I had had a severe relapse after going off the Doxy and also explained why the Doxy didn't work well enough.

He put me on high dose Amoxicillin and within two days, all of my symptoms responded......except the dopey 'brain fog' feeling in my head and imbalance which did take a week to resolve. I was shuffling around and wished I had a 'walker" !

For those who are not familiar with Lyme symptoms--- which can be very individual and present as other diseases and syndromes--- please consider this as a possibility. Lyme is not to be taken lightly and responds well to treatment when caught early.

Now my sports med doc and PCP have recanted on their their 'not lyme' diagnosis. But I am the one who had to suffer for it.

At the moment-- my TOS pain is HUGELY diminished.....and I no longer have the chronic 'stiff neck' that has been plaguing me for 4 months!

Can't know for sure if Lyme created my alleged TOS.....or if my TOS was not TOS at all....and instead was a pure Lyme symptom.

Either way, I'm on the mend with antibiotics.

Just wanted to share.