My Story - by Terter
I was diagnosed with Lyme Disease about 11 years ago. I had 3 negative blood tests until finally my last Western Blot came up positive.
I was sent from doctor to doctor with my myriad of symptoms; each one passing me to someone else, pronouncing me "cured", telling me to never call or come in again, or sending me to a psychiatrist. I stopped counting when I saw over 30 doctors...but some of them did help me to the best of their abilities. I was admitted to hospitals and went to the ER more times than I want to admit. One of my doctors committed suicide while my family was under his care. I spoke at his funeral. His doctor said that he had Lyme psychosis himself.
I used to work in Occupational Therapy at a rehabilitation hospital, never knowing that I would soon become the patient that needed rehabilitation. My mind and my body were falling apart, bit-by-bit.
I am not sure what was scarier - having to use a wheelchair off and on for 5 years, because of my movement disorder caused by Lyme Disease which gave me temporary paralysis, or the cognitive problems caused by this insidious disease.
I had gotten lost in my own home, had forgotten how to use a key and turn on a light switch, and even how to match socks. I lost my ability to do math-couldn't manage my checkbook or household without help. I saw two neuropsychiatrists who referred me to cognitive therapy, where I re-learned some skills, and how to compensate for the ones that I have lost. I have suffered visual and auditory hallucinations as well.
I have had virtually every body system either affected or in pain. Lyme Disease gave me cardiac and thyroid problems, and joint, bone, muscle pain, with swelling, burning, throbbing and aching everywhere-even my scalp. I have had ringing in my ears, bowel and bladder incontinence, choking on food, apnea, difficulty walking, and safety issues too. I once put my bare hands in the woodstove to turn over a log, and put my finger under a bagel to cut it!
At the same time that I was so ill with this disease, my two daughters, mother and sister were also fighting Lyme Disease too. We never knew who was going to be on IV therapy, in the hospital, or who could help who, and when. My oldest daughter lost some vision in one eye and had drop attacks. My youngest had learning disabilities, and obsessive-compulsive behaviors. I couldn't even help her with her kindergarten homework, as I was unable to comprehend the instructions.
Thanks to our faith in God, some wonderful doctors along the way, and supportive family, we have recovered so much of our health. None of us are left unscathed, but we are thankful for how far we have come.
It is so very important for those with tick borne illness symptoms to get to an LLMD-a Lyme
Literate Medical Doctor, as soon as possible. If I had been to one as soon as my symptoms began, I would not be on Social Security Disability today...left with a Myoclonic movement disorder, joint pain, and minor cognitive problems.
Thank you,
terter