Lyme Disease. I had seen the Lyme booth every year at the county fair- the one where a poster with ticks and a bullseye rash are displayed, but I never thought much of it until last year.
In the fall of 2010, my husband removed a tick from my back. A month or two later, I noticed something on my scalp- a scab that just wouldn't heal and later turned out to be basal cell carcinoma.
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In the spring of 2011, I had Mohs surgery to have the basal cell spot removed.
Two months later, I became sick. I woke up with my heart pounding, running a fever, and in a non-stop panic attack. An urgent care doctor diagnosed me with a kidney infection, (which later would seem that I may not have had one at all, or at least a very minor one). After starting the antibiotic I was prescribed, I felt worse. I was now pacing the house and very scared. My shoulder was popping and my leg had pain. Convinced that I was having a reaction to the medicine, I went back to the doctor and was told I could stop taking the drugs (3 or 4 days after starting them).
The fever went away, but the shoulder popping did not. 2 weeks later, I was running a fever again and having panic attacks. Another trip to an urgent care (this time out of state) showed that my fever was gone and I did not have a urinary tract infection.
A couple weeks later, a friend died. Again, I went into non-stop panic attacks. This time it lasted a week- straight! Sleep did not even ease up the anxiety.
During this time, I was also having tingling and numb sensations in my scalp. At first I thought it was from the surgery, but before long the tingling spread to the rest of my scalp, and eventually throughout the rest of my body. I started having vertigo.
A trip to an M.D. this time proved to be a waste of time. I had blood drawn and was sent me on my way with no.help.at.all. *I was later told that this doctor does not know about Lyme and would not have known to look for it.
At this time, I was already having the tingling going throughout my body, but was trying not to worry too much.
A couple weeks later, I started taking Amoxicillin for a sinus infection. I had taken it many times before without any problems. This time was different. The first night after I took it, I started having worse tingling. Now it felt like it was constantly running in lines through my body. I also started having problems sleeping. It was like I was stuck between awake and asleep.
The prescription was for 10 days, but I became afraid to finish it. Everything had gotten worse when I started taking the med., so I was convinced it was making me worse (a later learned that getting sicker from the antibiotics was a Herx-Reaction from the Lyme). I decided to take less than what was prescribed the last several days I was on it. That seemed to help, a little.
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Somewhere in there, I found another tick attached to me. This made tick #6 between 3 of the children and I within only 12 months!!!
The tingling continued, and I was no longer able to fall asleep easily. My kids were waking me up repeatedly every 1 1/2- 2 hours at night, so I was extremely sleep deprived. I felt sick and fatigued.
The fatigue became very bad. Taking care of my 5 kids (ages 1-8) took every little bit of me that was left. My husband got used to spending dinner with me lying on the sofa instead of at the table with the rest of the family. He even brought me my food sometimes so I wouldn't have to get up.
The left side of my face felt a numb/heavy type of feeling. I also had weird sensations in my tongue and upper lip. Around that time, I noticed that my tongue was shaking. I also started having electric shocks in my scalp if I would get startled.
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Between the tingling, vertigo, and fatigue, (and off and on fevers during 2011), I decided it was time to try another doctor. One of the first things she asked me was had I been bitten by any ticks. I went through a series of tests, which all came back negative for Lyme. I cried and cried after getting the phone call where the nurse said I didn't have Lyme. It had seemed so certain that was what was wrong with me, so now what?
After talking with the doctor, she told me she was pretty sure I did have Lyme Disease (blood tests are often false-negative for Lyme) and wanted me to start antibiotics. Within a day or two on the medicine, I was able to fall asleep just by lying in bed. It was wonderful!
Not everything was great after starting treatment. My anxiety increased 1-2 hours after each time I took the antibiotic the first few days. I began having random pain- in my knees, feet, toes, wherever. It would come on all of a sudden, then disappear an hour later. I started having muscle spasms all the time throughout my body.
A month later, another antibiotic was added to the mix. I had a couple days of migraines and sensitivity to sound. The muscle twitching increased drastically too.
One of the best things I did during all this was to take notes (and kept copies of lab work). I wrote down every unpleasant symptom I had, as well as any other relevant details (lack of sleep due to kids, stress, holidays, ect.). That helped my doctor a lot in keeping track of how I was doing. I had, I believe, 28 pages of notes from the first 10 weeks I was on antibiotics.
Two months into treatment, I began to feel worse. EXTREME fatigue, and muscle twitching that would not stop. It was worst I had felt since starting the medications. It was an internal fight for me to continue taking the medication when I knew it was making me worse. I had to eventually learn to stop fighting it and let it do its work. The ill feeling lasted a week and a half or so and then finally I felt alright.
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It's been 2 1/2 weeks since I started better and I feel pretty well except for the fatigue. I had never felt exhaustion like this before 2011. Sometimes I feel like I am on sleeping pills. I can sleep hours only to wake up and be too tired to want to get out of bed. Many times I will take a nap on the sofa in the evening because I am too tired to walk to bed. I feel as though my body is going into auto-shut-off and it is a very heavy and weird feeling. It's even worse if I take a short nap and then am woken up, so I have to work hard to time things right with the kids so that I don't become overly exhausted before they go to bed.
In addition to the fatigue I still experience, I am still having pain. Leaning over to give the kids a bath, or to switch laundry, causes my chest to hurt. I get aches and pains in my knees, neck, head, legs, ect. that come and go. I try not to make too many commitments because I never know how I will feel any given day. I also have a hard time getting motivated to do things (perhaps from the fatigue). The muscle twitching (which has eased up some) can make it difficult to fall asleep sometimes. I still get anxiety, but it's not the same as what was going on last summer. My doctor has even pointed out that I seem calmer than when she met me. My long-term memory has recently been improving too. After three months of antibiotics, there are still more months to go.
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I am one of the lucky ones. So many people with Lyme go un-diagnosed from doctor to doctor for years. I don't know for sure how long I've had this (it's possible I had it before the tick in 2010), but I am thankful that God brought me to find this doctor.
