Just Wanted To Check In
Nothing new to report from my end. I am still in a lot of pain daily as usual and no good days. It’s been an insomnia kind of month so no good sleep. Nothing to really complain about, I know many other worse than I am and people fighting to live. I am still off antibiotics and taking my advance lab lyme test maybe next week.
Hopefully the lyme test will be positive and give me a solid yes since i hear it is 80%+ accurate. I am taking many supplements still and my heart and POTS seemed to calm down. My heart rate and pulse have actually been normal and I haven’t fainted in a while. Not sure what I did differently.
I hope you all are having good days and smiling even through the pain. Don’t ever give up or let your illness define you. Keep you head up and fight on, better days are ahead although that may be hard to believe.
Advance Lab Info
501 Elmwood Avenue, Sharon Hill, PA 19079
Phone: (855) 238-4949 · Fax: (855) 238-4946
Neurosurgeon Visit And Lyme
Last month my Neurologist told me my he found a new spinal cyst, more bulged discs and my spinal stenosis was worse. He told me I was one “small jolt away from be paralyzed from the neck down”. That’s enough to scare you. So I was a little nervous for my appointment yesterday with the neurosurgeon.
For the first time ever my neurosurgeon really surprised me with his answers and he was a really nice guy. I won’t bore you with how the long appointment went since he was running an hour behind. He was probably one of the nicest doctors I have since since this nightmare started.
The first thing my neurosurgeon asked me when he walked in was “did your kids do this pain chart’? (I posted a picture of it below) My pain chart circled the whole body and I filled in the various shapes all over the body. He said “there is no way your spine is causing all of these issues you must have an illness” and I told him about lyme disease. He said that makes sense.
So after going over some physical tests with my and my 2 CD of MRI scans he said my neck was worse. He said I have “hypermobility” and he can tell by my fingers. He measured the compression on my spinal cord and said that it wasn’t enough to cause he to perform emergency surgery. He seemed confused the whole time we talked.
He said I do not need surgery and I should be fine. He blames my paralysis and loss of ability to walk a couple months ago on lyme. Yep he actually told me he believes I am really sick and lyme is causing it all. I can’t believe a neuro said these words. So no surgery and no plates and screws. He said he can do the surgery but with all of the pain I have he said “what is the point you wouldn’t know if it helped anything”.
He recommends I go to a well known hospital and have a a community of doctors or meeting of the minds to figure out what is all wrong with me besides just lyme. He saw my medical records and each doctor has different diagnoses such as Fibro, Lupus, Lyme, CFS….. so he said I need Dr House in my corner who will figure out exactly what is going on.
He said I was a nice guy and he really hopes I can get some help. Which was very kind and doctors have never said that to me. He even talked about the 49ers with me. I was very pleased with the visit and happy I do not need surgery. Although it doesn’t cure the paralysis, radiopathy and pain at least he said it was the lyme and not my spinal cord for sure.
My pain chart. My hand cramped or I would have marked more.