New here and looking for support and wisdom.
Excuse the length of this post, and thank you for ur interest.
I am 40 years old and stay at home mom of 3 kids ages 9,14 and 16.
I've lived in high infectious area's such as Virginia Beach and Groton CT. Now living in the Tampa Florida area.
My symptoms started in 2003-2004 with fatigue and gait issues. Then the tremors in my hands (more predominant left hand) and stiffness and rigidity and stiffness. Balance problems too. I've had all these main symptoms since 2004.
I have an autoimmune disorder when I am sick my white blood cells will not elevate. When I was eight I had my right kidney removed because it was blocked and infected and not working. It had swelled up triple its size and was hours from bursting when removed. Never once did my white blood cells elevate during prior to my kidney removal. My mom was persistent tho, she knew I was sick. A doctor found my kidney thru xray and feeling around from the outside that I had issues.
I am on my 5th neurologist now including a movement disorder specialist. They have thought I have had MS and Parkinson's Disease. My MRI's all come out normal tho. And my blood work too. Have been screened for LD in the past and came out negative. They are hesitant to diagnosis me with Parkinson's because my symptoms are very "atypical" Parkinson and more psychogenic in nature. They will not even consider LD.
I recently went to a Neuro-Sensory Doctor in TX last month. Who thinks outside of the box and has a way of measuring dopamine levels thru tests he has developed. Surprise, my dopamine levels are low. But he ran some unique blood tests which included the LD test once again.
We have always suspected LD. But my tests for it in the past have been negative. I recently read because of auto-immune disorder the antibodies used to detect LD are not there, thus you will have negative test results.
Especially for the western blot.
Here are my recent lab results.
Vit D levels are abnormally low
DNAase B antibody is abnormally high
Mycolplasma IgG is abnormally high
Candida IgG is abnormally high
Candida IgM(acute infectious) is abnormally high
Candida IgA is abnormally high
*Noted in the infectious titers is the mildly elevated
Lyme's titer (equivocal).
Then my westren blot was normal
I was put on 100mgs of doxcycline to cover the Lyme's
and Mycoplasma and strep.
I am also taking sinemet that helps with the
stiffness and rigidity some, and eases the tremors.
I have been told they think this is some sort of Placebo
effect but we will prescribe it to you anyway's.(insert big sigh)
What do you all think about the mildly elevated
Lyme titer? Guess that was the ELISA that was elevated.
What tests should I be asking to help diagnose my problems
with autoimmune disorder.
Its miserable not to know, not knowing for years now has
taken its tole. Depression and sometimes giving up hope or the fight
to figure this out. This newest set of blood work is the only decent
results and indicators I have had thus far. So, I have renewed hope.
I am happy to have to found this support forum and look
forward to reading-learning and getting to know you all.
Thank you in advance, for any help and care.