On the morning of July 8, 2004, I woke up feeling like I was coming down with a terrible flu bug. My stomach was very nauseous. My body ached all over like never before. My neck was incredibly stiff, finding it almost impossible to turn my head from side to side. My temples pounded so strongly it was difficult to open my eyes. My joints were stiff and swollen as if, overnight, my body had been taken over with severe arthritis. A persistent fever warmed, then chilled my body on and off through out the day. Thinking it was some sort of flu, I stayed in bed.
We were Up North, spending our traditional Fourth of July vacation time with the entire family and our cousins staying next door. It was also my Mom’s birthday! I didn’t want to spend our vacation sick in bed. Treating my symptoms as a flu, I rested and took Advil and/or Tylenol to help with the fevers and pain. I managed to participate in the ongoing activities, but knew something wasn’t right. I had never felt like this before.
A couple days after the onset of my flu like symptoms, I noticed a red, circular rash on my right thigh. As my flu symptoms continued, the rash became larger and warm to the touch. I was baffled.
(Pictured Above: Bull's Eye Rash)
July 13, 2004, back in Brookfield and still experiencing flu like symptoms with a red circular rash present, I made an appointment to see my Primary Care Physician. Before my visit, I did some quick research on the internet. Could it be ‘Lyme Disease?’ Could my circular red rash be a bull’s eye rash also known as Erythema Migrans (EM)? Interestingly, I found all my symptoms to coincide with Early Lyme Disease. I would discuss it with my doctor. He was able to see me right away. Luckily, my rash was still present. I showed it to him, explained my ongoing symptoms and mentioned my concern about it being Lyme Disease. He literally laughed at me and said, “You read too much on the internet!” Wow! I was stunned. Why would he say such a thing? As patients, we have to be our own advocate when it comes to our health. I didn’t know just how true that was until now, many years later. He gave me a prescription for 24 hour dose of antibiotics. Not knowing then what I know now, I didn’t question his course of action. I got my prescription filled and went back home. Still, something didn’t seem right. My ‘gut’ was telling me to research more, so I did. The medication he put me on was a preventative medication used for people who work in wooded areas, hunters, lumberjacks, etc. I immediately called his office. I mentioned to him that I believed I was already infected and a preventative medication was not going to help me. He was reluctant to change my medication. He did not believe I had Lyme Disease, or that I had even been bit by a tick. He simply thought I was researching too much, therefore making a self diagnosis and it was “all in my head.” I disagreed with him. He refused to change my prescription. Quickly realizing I was getting no where with him, I ended our conversation, said good bye, hung up the phone and never saw him again. It was time to research further into Lyme Disease. It was time to find a new doctor.
I had been Up North earlier that Spring, raking up leaves and brush, chopping and stacking wood, and many other outdoor activities. At the time, I had never heard of Lyme Disease being found in the city. To my knowledge, deer ticks were only found ‘Up North.’ Years later, I would learn that to be all too false. I do not know where I picked up the tick. It could have been at home, in Brookfield while working in the yard and gardens. It could have been at the dog park hiking through the tall grasses. It could have been Up North. But, at the time, all I knew was I was up north several weeks prior to my outbreak of symptoms and I knew all too little about Lyme Disease.
Me and My Charlie Girl in the tall grasses!
My husband, Vince and I decided to call a friend of ours who is a doctor for the Center for Disease Control (CDC). We made an appointment and went to see him. My rash was still present as well as my other symptoms. After a detailed discussion and thorough examination, he concluded that I indeed had Lyme Disease. Although the Bull’s Eye Rash is rarely seen in people with Lyme Disease, in the clinical sense, it is a huge indicator that the person has indeed been infected with the disease. He started me on oral antibiotics of Doxycycline.
While starting the oral antibiotics, I found myself becoming more sick. All my symptoms were magnified. With much concern, I called my doctor. He assured me it was a good sign. When fighting Lyme Disease the patient will always get and feel worse before they get better. I didn’t fully understand what he meant by that so I asked for further explanation. The antibiotics are entering the body, stirring up the spirochetes (lyme bacteria). The antibiotics are fighting against the spirochetes and the spirochetes are fighting back! There is a war going on in your body. With Lyme Disease, the spirochetes can ‘hide’ in a person’s body. It can also morph itself into different things, causing false diagnosis’ of other illnesses as well as inconclusive blood test results. Blood test should never be used as the only test to diagnose for lyme disease. I have had several blood tests for lyme disease. I have yet to have a blood test come back ‘positive,’ even though I have had the bull’s eye rash, been in contact or embedded numerous times with many different types of ticks and clinically have had nearly every lyme symptom now known to mankind. It is so vitally important for people to know that blood tests are NOT accurate when it comes to Lyme Disease.
Another known reason for the increased symptoms once starting antibiotics is called “Herxing.” An all too familiar word in the ‘lyme vocabulary.’ Herxing is a ‘dying off’ process of toxins in your body. As the antibiotics kill off the spirochetes, many toxins are released in the body. It is essential to detox your body to help ease your way through the herxing. (I will discuss more about herxing and detox in a later post.)
Almost two weeks after starting heavy duty oral antibiotics for Lyme Disease, my doctor decided to treat me intravenously with an antibiotic called Rocephin. On July 21, 2004 I had a PICC line inserted into a vein in my upper left arm. The PICC line had a small tube catheter that was inserted into a vein, ran up inside my arm, across my chest and into my heart. I learned how to administer antibiotics through the PICC line several times a day. As a family, we were all trained by the visiting nurse on how to properly clean and administer medication through the PICC line! Even my Mom and Dad were at the in-home training session! This was much more convenient than going into the hospital to have it done on a daily basis. The use of the PICC line was to be a more aggressive way of treating the Lyme Disease.
At the six week mark, 2 weeks on oral antibiotics and 4 weeks with a PICC line, my doctor followed the CDC guidelines set before him and made the decision to stop treatment. He felt I had been ‘cured’ and no longer had lyme disease. My PICC line was removed on August 18, 2004 and all treatment was stopped. I mentioned on many occasions, during treatment, that my symptoms were not improving. He suggested that the things I had been experiencing were all ‘residual’ of the lyme disease. Lyme Disease had triggered all these other health issues that I now had to deal with.
The next several weeks I continued to have terrible headaches. My neck was still incredibly stiff making it difficult to do much of anything. I was fatigued, sleeping more than 10 hours a night, with naps during the day. I barely had the energy to get out of bed. My fingers continued to swell, become stiff and numb. All of my joints were sore. In 8 weeks I had gone from an energetic, non-stop, go get ‘em gal to a woman who had to make herself crawl out of bed and face the day. I was no longer ‘ME.” My skin hurt. Even my hair would hurt. I became more and more depressed. These are ‘residual’ effects of the Lyme Disease? I will have to live like this for the rest of my life? Please, Lord, I want the ol’ ’ME’ back.
I was never afraid of bugs and/or nature. You could always find me somewhere in the gardens!