New here and looking for support and wisdom. I will try to make this brief as possible and not confusing. Its complicated.
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.
Posted by kimmie (Member # 25547) on :
the chance of a false positive elisa is 1-3%. I had to learn that the hard way.
You should see a Lyme literate doctor for appropriate diagnosis and treatment. 100mg doxy is not a dose for lyme. There is a doctor in your area Dr C
Posted by momofthree (Member # 19490) on :
Balance problems could be Babesia...mine were.
Posted by JenniferD (Member # 28030) on :
Ty Kimmy and momofthree, The mildly elevated ELISA is like a huge red flag to me. And I just read how complicated and difficult it is to interpret a lyme disease test is and should be looked at by a LLMD.
A mildly elevated result is a big deal for me given my immune problems. I will defiantly get in touch with Dr. C.
On a side note, I read about these night tremors where they think the bacteria lowers the bodys temperature in order to survive. I had night tremors, never knew what they were. They didn't happen every night and my whole body would shake and couldn't get warm no matter what. I always felt these were "attacks" of whatever was wrong with me because I would always worsen slightly afer having them.
I am having a real bad couple of days here. The burning in my muscles is continous and the trmors in my hands are exhausting. The only relief I have is my simmer and a cool dark room with a cozy bed.
As most moms know it's impossible to stay laying down rested with the kids coming home from school and dinner time approaching. I'm gonna ask my husband tonight if he will help with dinner and homework.
I will keep you all posted.
Posted by JenniferD (Member # 28030) on :
I forced myself out of bed after picking my 9 year old up from school. And once I got moving I felt better. Sometimes just doing something shifts you're focus from what hurts.
I have a lot of burning pain in both wrists today and stiffness all over. And the tremors are an everyday deal. Its nothing I can't tolerate tho.
But I am proud that I cooked dinner tonight and helped my son with his writing project. I feel like I pushed myself thru it all and tommorow is another day.
Posted by JenniferD (Member # 28030) on :
Well, its 4:35am I just took a super hot bath to try to relieve the joint burning pain in my wrists and hands. This is by far the worse pain I have had in that area.
I only have alieve to help with the pain. So, I took 4 the max dose. I don't know if this is some sort of Herx effect because of my doxoclycine I've been taking 100 mgs now for 3.5 weeks finally doing something. I know it isn't much of a dosage.
I don't have anyone to talk to about all this and I am scared. Ive been lucky so far and handled the pain quite well. Tonight my pain level is a 8.5 and I know that child birth is a 10 in my book. I have had 3 kids.
Wish me luck, I know many of you have been in my shoes.
Posted by Misfit (Member # 26270) on :
I have had that burning pain you describe. There were nights when i slept with ice bags on my hands. I had a LOT of inflammation and joint pain all over. What helped me tremendously...the dietary guidelines per dr burrascano. Sorry i cant post links or i would. Its NO sugar and very low carbs basically. After implementing the diet i would describe myself as "sore"..and when i slip up i SO feel it. I hope this helps. Oh..and NO ASPARTAME!
Posted by JenniferD (Member # 28030) on :
I know the no sugar thing would help my Candida issues. My hands wrists are soo stiff today too, lol I can point to type but don't ask me to hold or write with a pen or pencil.
I didn't think to try ice, I'll give that a go now. I have gel packs in the frig.