Having seen three different doctors, the first leaving me to think my symptoms are all in my head and referring me to the healing methods and books by Dr. Sarno on Tension Myositis Syndrome...
... the third doctor diagnosing me with Thoracic Outlet Syndrome and prescribing exercises for my joint pain....
... and my LLMD doing a new blood test (results not in yet) and of course telling me to stay on abx, I had pretty much lost my mind wondering who's right.
So what do I do? I decide to stop taking Doxy for a few days to see what would happen.
All the while I have been doing the 'exercises' .... I also started the 'mind over pain' Sarnos method which IMO isn't easy to grasp without some sort of coaching by the man himself.
So what happened while being off Doxy for a few days? Nothing. I felt no better, no worse.
However...
.... I happened to read a few interviews and articles featuring Amy Tan, and her early symptoms totally resonated with me. Frozen shoulder, bad neck pain...etc. And of course I went back to believing in my self diagnosis of having a TBD and reviewed---again--- all of my symptoms that I've had over the past year...
...and remembered one that I had completely forgotten about. Which was: the feeling of being completely paralyzed when waking up from any one of my numerous naps during the day-- especially after any kind of exercise.
And I mean stiff as a board-- unable to 'wake up' like a normal person-- vascillating between paralysis and being awake-- body rigid-- mind in a state of confusion and then I would suddenly leap up, buzzing all over until it passed.
How on earth could I forget something like this? It was really frightening, totally abnormal and I never remembered to tell any of the doctors!
Believing THAT symptom could be hugely related to a TBD (????) I resumed taking my Doxy. and what a mistake it was to GO OFF IT in the first place!
I am now really paying for that mere three day hiatus. Major herx! All over body pain-- joint pain-- hot flashes-- excruciating back pain, you name it!
Moral to the story-- for me? Don't stop taking ABX! But perhaps my 'test' to see what would happen, did make Lyme all the more clear.
My body is TELLING me that I MUST have a TBD. I can find no other explanation and feel I am back to square one in fighting this disease---- or at least have
started to kill off some of remaining bugs that bloom in the four week cycle of their wonderful, blood sucking lives.
But again--- as I have mentioned in other posts-- it's the NOT KNOWING FOR SURE that makes me sooooooo depressed and worried that I might need more aggressive treatment.
Best to all....and I wish I had more (other than my own problems) to offer the members here!