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Story 57

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

When my daughter was around 6 months old I started getting really sick. I had the flu or a bad cold every two to three weeks. I was convinced that my lack of sleep was causing me to get sick. I even thought our house had mold and I had our basement cleaned with bleach. But, no one else in my house was getting sick. I never remember getting a bite, nor had the bullseye rash.

Around my daughter’s 1st birthday, the top of my right foot, toe and ankle started hurting really bad. I couldn’t hardly walk especially after taking walks. My PCP referred me to a Podiatrist. The Podiatrist couldn’t figure out what was wrong with my foot so he referred me to a neurologist.

By the time I was able to get an appointment a couple months later to the neurologist I started having all these other problems. I woke up every morning like I drank a whole bottle of vodka the night before. I felt so hungover, but yet I didn’t have a drink of alcohol the night before. I woke up with the worst headaches and I had nausea. My whole body hurt. I felt like I was in a car accident. My back hurt, and I had this knife in my neck that transferred to my spine down into my shoulder blades. My muscles were so weak I struggled to carry my daughter downstairs without my arm feeling like it was going to fall off. The neurologist did test me for Lyme disease along with 15 other tests, but the Lyme disease test came back negative. They diagnosed me with fibromyalgia and told me I was depressed. I didn’t want on depression medicine. The only reason I was depressed was because I felt like $#!* Every day of my life! I asked them to, “Please, help me, there’s something wrong with me.” They told me they were trying to help me. “We are trying to put you on depression medicine for fibromyalgia.” I got mad and said, “I don’t have fibromyalgia!”

I decided to go get a 2nd opinion at another neurologist which took months to get into. In the meantime, I went to physical therapy for months which they made my neck/spine/shoulder blades and foot feel worse. So, my friend referred me to a 2nd physical therapist. I had relief some days but other days I felt worse. They ended up discharging me because I made no progress.

The 2nd neurologist saw me for maybe 5 minutes and didn’t listen to me as I complained about the knife in my neck and put me on a, “migraine diet.” I logged everything I ate and wrote it down on paper for him.  Months later I went back to the neurologist for a check up for my “migraines.” The nurse in the room stuck up for me and told him I was there because of the knife in my neck and spine. To make a long story short he referred me to go get an MRI on my neck and spine. Of course that took months again to get in the place and another month to get the results read by the neurologist. The neurologist laughed at me and said, “Everything looks great, your in great health.” So I felt hopeless at this point and cried like a big baby the whole way home on the 20 minute ride with my poor precious daughter sitting in the back seat. As she watched me ball my eyes out because I spent the whole year with her bringing her to appointments with me trying to find out what was wrong with me.

So, around my daughter’s 2nd birthday. Everything just keeps getting worse. I thought I had cancer and I was dying. I struggled to take care of my child. I dreaded having to take care of a human being when I wasn’t well enough to take care of myself. I was a stay at home mom by myself with little help because her dad works 60 plus hours to support us and I don’t have grandparents that help. I had shooting pains in my neck just to change her diaper with the knife stuck in my neck. I felt weak. I couldn’t even open a milk container to get my child a glass of milk. Both feet started hurting. I had really bad shooting pains in random spots and muscle aches. The worst headaches. I had cramps in my stomach and I couldn’t sleep at night with night sweats and pain.

I called my PCP to help me and he told me I might have Lyme disease and he wanted to get me tested for it again. The test came back positive for Lyme disease. He started me on doxycycline for a week but the pains in my stomach just kept getting worse and I had persistent diarrhea. He put me on Amoxicillin for a month which at least I woke up and I didn’t feel like I was hungover! But I still had symptoms. I was put on Cerofrom or something(21 days) I can’t remember but I still had symptoms. I was put back on doxycycline for 30 days. It took away my headaches everyday, and the knife in my neck and spine but I still had symptoms.

I starting getting arthritis like pain in my hands, joint pain, my muscles in my thighs hurt along with pains down the top of my arms. My PCP referred me to a rheumatologist. They tested me for 15 more blood tests and got more X-rays. But, of course they told me I had fibromyalgia too. My PCP then referred me to an infectious disease specialist in Altoona. Of course I got more blood work and still no answers. And he wasn’t doing anything to help me because he said “Lyme disease is complicated.”

I then was referred to a infectious disease specialist in Pittsburgh. Which he told me I may have a thyroid problem or I have syphilis. Both tests came back negative and told me to go back to my PCP. Which, I later read an article about the same hospital that I went to was being sued for mistreatment and misdiagnosed for Lyme disease. The numbers keep rising apparently for people suing because all their symptoms got worse over time(as all of us Lymies already know).

Currently going on 2 years of this I just have learned I have to fend for myself. I cannot afford an LLMD.  I plugged myself into a Lyme support group that has been super helpful. I am changing my diet slowly and drinking tons of lemon water and green tea. I take a detox bath two times a week. I am taking Amoxicillin again for the 2nd month along with probiotics and vitamins. I heard acupuncture works so I plan on doing that soon!!! Because I still am not well and still have really bad “Lyme days.”

Lyme disease has robbed my experience as a mother. I wasn’t able to enjoy my daughter the way I wanted to. On my good days I try to enjoy her as much as possible. As she just turned 2 and a half years old. I just thank God everyday that my daughter is the happiest, healthiest, most awesome, funny, cool little girl and I didn’t destroy her personality bc of my miserable disease as I faked being healthy (except the ride home crying that day) every step of the way so she would be a happy little girl unlike her sad, depressed, miserable, “dying” mother. I am hopeful that I will get better in time and I can live a normal life and start enjoying my daughter. I don’t wish this disease on my worst enemy. This disease sucks and someone needs to find a cure so people don’t suffer for years. Thank you for reading my story.

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