Seven months ago was my 36th birthday. Plans for dinner with a friend, followed by a softball game. I was looking forward to a nice relaxing birthday. Before dinner I suddenly got a bloody nose, something I hadn’t had in a while. I could feel my sinuses and ears hurting. I told my friend I was sure I’d wake up with a sinus infection the next morning. I also said that something just didn’t feel right in my body.
As predicted the next morning I woke up with a real monster of a sinus infection. I called my doctor’s office (this was the first in a series of communication breakdowns with the doctor’s office staff and my doctor) and was told to go to Urgent Care because there were no openings. I made my way there and was diagnosed with my second or third sinus infection of the allergy season, which had only just begun.I spent the next two days in bed, crawling out on the third day for my birthday celebration at the city’s annual Tulip Fest. I was very weak, and had to sit through most of it, but it was nice to be out and with friends. I ended up throwing up before we left. I figured it was the antibiotics, and so much physical exertion after being sick.
On Monday I went back to work, and slowly recovered from the sinus infection while finishing my antibiotics. They had given me a z-pack for the infection. What I didn’t know was that starting the antibiotic was probably creating a herx reaction, long before I would ever find out what a herx reaction was. Zithromax is one of the antibiotics used to fight Lyme disease, so the medicine probably began to kill the Lyme bacteria. (When the bacteria die, they release toxins into the body, causing symptoms to worsen.) At the end of the five days, I didn’t feel all that great, but figured with time I would.
I woke up Friday morning, three days after finishing the antibiotic for the sinus infection, groggy and trying to force myself out of bed. It was eight days since my birthday. I put on my glasses as I always do as soon as I wake up. I’m almost legally blind without glasses or contacts, so until I put them on I can’t even tell what time it is. Shortly after putting my glasses on I thought one of the lenses must have fallen out because I couldn’t see anything out of my right eye. Everything was blurry. I took my glasses off and saw the lens was in there. It was my eye that wasn’t working.
I got ready and headed to work. As the morning progressed, my vision slowly got a little better. As it did, I started getting really bad headaches around my eye and pulsing pain in the side of my head. My co-workers talked me into calling my doctor. I was told there were no appointments, but to go to Urgent Care, and they would have any imaging equipment they’d need to check me out. Off to Urgent Care I went, again. I was thoroughly examined, and nothing was found to be wrong. They didn’t take any x-rays, or do an MRI though, just a physical exam. They said it must be something with the eye, and set up an appointment for me to see an eye surgeon an hour later.
I spent a couple hours with the eye surgeon, having all kinds of tests done. He called me in and said that my vision had improved to 20/40 since the blurriness I woke up with, but he could find nothing wrong with the eye. Everything was healthy. He asked about dizziness, numbness or tingling sensations I may have experienced. I told him I often felt a vibrating in my right leg, but I always thought it was because of my cell phone usually being in the side pocket. He said he didn’t want to worry me, but the symptoms seemed a lot like MS, and that I should follow up with my doctor first thing Monday morning.
Home I went, to think over the weekend about the possibility of MS. On Monday morning I called my doctor’s office, and was told there were no available appointments until the next day. I was annoyed, but they said they checked with my doctor, and she said to come in on Tuesday. (This was the next breakdown in communication with the office.) I went in for my appointment and the doctor had gotten all the reports from Urgent Care. Other than not having any balance, she couldn’t find anything wrong. She scheduled a full physical exam for the next week, and referred me to a neurosurgeon. (Weeks later she would question why I went to a neurosurgeon instead of a neurologist at first. She didn’t think she would have said that.)
Luckily I got an appointment for two days later with the PA for one of the neurosurgeons. When I explained the eye thing, and some of the other symptoms she said “Why, it sounds like Lyme disease.” She scheduled a bunch of tests, MRI’s and MRA’s of the brain and neck, x-rays etc., but she never ordered a Lyme test. She was under the impression that if what I had was caused by Lyme disease, it would be apparent with the brain scan, much like lesions for MS. I waited two weeks for insurance approval to have the tests done. At this point it had been three weeks since I had lost vision in my right eye, and I was getting very frustrated with the medical and insurance systems while I also seemed to be experiencing a worsening of my symptoms, as well as more and more neurological type problems.
I finally got the approval and was scheduled for my tests and given a follow up appointment another week later. The neurosurgeon called me in, and spent less than two minutes with me. She said there was nothing wrong, other than some possible disk problems in the neck, so the only pain I should feel would be occasional in my upper arms. She scheduled me for physical therapy and steroid injections into my neck. I had spent the last year receiving five steroid injections into my back, each time getting sicker and sicker after the infection. I made the appointment, but didn’t feel comfortable with her diagnosis or with having more steroid injections. I asked her why my legs hurt so much, and she put her hand up to my face and said “I will not discuss anything below your neck, because there is nothing wrong with you,” and she left the room. I was in shock. I had waited a month for some kind of answer, expecting something horrible like MS, but hoping it would be something easy like Lyme. We were even taking bets on Facebook the night before about whether it would be MS or Lyme.
I went to my car and called my Mom. I said “maybe I am crazy, and it’s all in my head.” At that point I was beginning to doubt myself, because I had never come across a circumstance with the medical system where they could not, or would not help me. I called my primary doctor back, almost in tears, and told her the results. She said to me “you’re not a complainer, you don’t come in unless something is really wrong, but I just don’t know what it is,” and scheduled me an appointment to come back in on Monday. She asked me if I wanted her to do a Lyme test, since the PA at neurosurgery had originally said that, and I said sure. She told me she was going on vacation, but if anything came back someone would call me. Four days later, on June 11th, she called, ecstatic with the news that I had tested positive for Lyme disease; the test came back with bands on the western blot test indicating what she interpreted as an acute Lyme infection. She prescribed doxycycline, told me to take it for three weeks and I’d start to feel better in a couple of days.
I was thrilled. Finally, an answer. This is an excerpt of what I wrote that day in my personal blog after receiving the diagnosis, so glad to have an answer and to know I’d be back to normal very soon.
“So Lyme Disease it is…three weeks and six days after waking up with a problem I finally have an answer. I can’t tell you what a relief it is. I had such a burst of adrenaline when the Dr. called. Before that I had been lying in bed so exhausted and in so much pain I couldn’t move, yet unable to sleep. I was thinking how can I possibly function today. An answer was wonderful. My Dr. said she’s never been so excited to tell someone they’re sick and her co-workers couldn’t believe how happy she was to tell me I had Lyme disease.
Yesterday I went to the Center for Natural Healing in Kingston…Afterwards I fell asleep twice while doing something at my Mom’s. I finally slept for about an hour. It took another hour to clear the fog in my head to drive home. I couldn’t move, I couldn’t make any decisions. I had plans for doing some shopping and enjoying my pass day, but all I could think about was getting home to bed. I cried on the Thruway on the way home, feeling so overwhelmed with frustration at the past three weeks of not getting any answers. I was angry at the doctors who told me there was nothing wrong. Even angrier at the doctors who didn’t do their job to even try to figure out what was wrong. Angry at the misdiagnoses and the time wasted in bureaucratic BS.
I was afraid I was going to have to go out on leave at work, unable to do work when I was there, and it being harder and harder to get to work. Angry at the almost $1000 I’ve spent already to find answers.
But this morning all of that was taken off my shoulders as the Dr. said “you should start to feel better in a few days.” As the day progressed all the things I worried I wouldn’t be able to do this summer suddenly became reality and it thrilled me. No more lying in bed on beautiful days, listening to people enjoying the sunshine outside, while I sat inside in pain. Hope started to return. The idea of feeling normal again filled me with adrenaline. To not have to put so much effort into just cooking dinner, cleaning the dishes, let alone do laundry or keep my apartment at least semi clean. I worried I was going to have to ask for help to do the simplest of things. I felt bad when friends with full time jobs and kids were offering to do my grocery shopping for me. How could I possibly be that sick? And how could I continue to feel sicker and sicker each day? And then today I knew an end was in sight, and there is hope that Eric will be Eric again. And life will begin to return to normal again…”
I cringe now when I read those words, so many months later. I really had no idea what my body was in for, or what I was about to face. If I had any clue at all I never would have been so relieved with a diagnosis of Lyme disease.
This is how it all began, my journey with Lyme disease. The actual journey began many years before that, but the knowledge of the journey was not known to me until this all transpired. It is just the tip of the iceberg in a story full of sickness, anger, hope and understanding that has brought me to this point today, where I am sharing my story with others in hopes their awareness may help another person avoid the effects of this horrible disease.
--Eric Rutulante, New York