Friday, June 25, 2010


The first time I thought I had Lyme Disease was in September of 2007. My family and I had come home from our final outing to our camp in Tunbridge, Vermont. We had just passed papers, and the new owners let us stay at camp that night since we also went to the Tunbridge Fair. We slept on the floor on air mattresses and I remember waking up with a sore eye. This was not unusual since I had been having eye infections on and off for a couple of years. The day after we got home was Sunday; my eye looked worse. I felt like I was coming down with something. By nightime I felt okay, but my eye was worse and my other eye was starting to turn red too.

On Monday, September 17, my eyes were worse so I made an appointment to see my PCP. She was out of town but I did get a substitute doctor, which was encouraging, since I am not crazy about my PCP.

The doctor wasn't sure, but felt the eye problem was viral since there was no pus. I also discussed the off-and-on bouts of diarrhea I had during the summer months of 2006 and 2007. We though it might be gall bladder related since it didn't have the characteristics of IBS. I went to my optometrist and he thought I had a viral episcleritis infection. He told me to use hot compresses on my eyes. Ironically, he had spent several years fighting Lyme disease.

That night I got ready for bed and noticed my right heel was sore as if I banged it or something. By next morning both my heels hurt. Throughout the day things went from bad to worse as the pain spread thoughout my feet and toes, up my leg to my knees. My ankles were very swollen and felt sprained. I also had a weird rash and bright red skin covering the tops of my feet.

By the next day there were splotches of red on my legs and they hurt to the touch. My elbows were now sore too. The soles of my feet had red blotches and my toes looked like sausages that were ready to burst. I could not walk; my feet were in excruciating pain. I did not feel sick like I had a cold or flu. I went back to the doctor. He didn't know what to make of it and had me tested for ANA and Sed, rate thinking I may have Rheumatoid Arthritis or Reactive Arthritis. Also while I was there my feet turned dark blue, exhibiting Reynauds which I never had before. My blood pressure was extremely low.

I was scheduled for an abdominal ultrasound. I needed something for the pain so I could function, and ibuprofin was out of the question. I had taken so much of it earlier in the year for a ruptured lumbar disk that it now made me sick. We decided to try Celebrex. I found that although it took a while to work it did make it much easier for me to walk and I could function for at least half the day.

The next day, Sept 19, my feet were even worse. On the side of my left foot was a semicircle rash that to me (and no one else) looked like half a bullseye. There was no sign of a tick or a tick bite but I really felt as if I had come down with something strange like Lyme disease. Although I had small red rashes on both legs this was the only rash that was itchy. I took photos of it. I noticed that for the first 3-4 hours of the day my feet were in excruciating pain but not quite as bad as the day progressed. This became the standard for me. When the Celebrex kicked in I got dramatic relief.

The next Monday, Sept 24, I had my ultrasound and went back to the doctor. I know I had more rashes and symptoms. My bloodwork had come back normal but he had me get more bloodwork and a Lyme test. As little as I knew about Lyme at that point, I knew the test was worthless. He gave me a three week prescription for Doxyclyclene and told me regardless of the test, if it were him, he would start the abx. I started the Doxy that night.

The next morning I noticed my arches hurt more and the base of my toes hurt.

The next day my feet were so swollen I could only wear slippers. I went back to the doctor and he told me my bloodwork was still normal. He was stymied and offered me prednisone which I declined since I go psycho on it.

Friday my blood tests came back normal. My ultrasound showed a normal gallbladder but enlarged ureters on my kidneys.

By Sept 29 my feet weren't as swollen or sore but I felt exhausted and mildly flu-ish. The next day my eye started to get red again. My eye doctor thought it was episcleritis again. I had an existing appointment with my dermatologist for an eyelid problem from the previous year, and he looked at my feet and what was left of the rashes. He said that he did not think it was Lyme but just in case, I should have an extra week of abx. He gave me samples of Doryx which is timed-release Doxy. By then the Doxy had been causing nausea so the Doryx was a welcome change.

I called my Cranial Osteopath's office to find out if there was a Lyme doctor less than an hour and a half away. Much to my surprise and delight I found out my Osteopath was also a Lyme doctor. I already had my monthly appointment coming up. When he saw me he said he couldn't confirm or deny Lyme in me as nothing was really typical. He gave me the IGeneX lab kit which I brought to Labcorp. On the evening of October 31st he called me to tell me I tested "very positive" for Lyme--even CDC positive.

He started me back on Doxy from the local CVS but with a mail-in to Medco for three months of double dose Doryx. Medco gave me a hard time but my LLDO spoke with them by phone and I was eventually able to get the Doryx. The Doxy was making me so sick to my stomach I almost couldn't keep it down. It made me salivate so strongly that I had to stay by a sink.

Prior to September 2007 there had been major stress and traumas dating back to May of 2006. On that Mother's day there was a flood of biblical proportions in my neighborhood. My neighborhood is surrounded by an oxbow lake. The last major flood had been in 1987 but this one was much worse. The main road that connected the neighborhood to the rest of town was under twelve feet of water. Twelve of my neighbors had homes flooded but mine remained dry as I live on the highest point. We had to evacuate as electricity and water were cut off. We stayed in a hotel from Sunday through Thursday when the water had receded enough for utilities to be turned back on.

Thursday night I experienced a weird visual disturbance in my right eye. My eye doctor referred me to a retina specialist and I was told I had a detached vitreous. Around this time I started having problems with my eyelids flaking and peeling and my eyes kept getting minor infections. I also started having bouts of diarrhea that didn't correlate to my diet. The diarrhea calmed down by winter but in January of 2007 my L5-S1 disc ruptured and a large chunk landed on a nerve root. It left me with a gimpy left leg and pins and needles in my left foot. In February an MRI confimed that I had bulging and herniated discs as well as spondyliosis of the L5 vertebra.

I was put on a Medrol dosepak which is a six-day prednisone pack. Two weeks after taking the prednisone my right eyelid swelled up so badly that my eye was almost shut. After making the rounds of several doctors, my dermatologist diagnosed eczema and prescribed a very mild cortisone ointment to put on my eyelids. This seemed to do the trick and my lids stopped flaking and swelling. I had my back surgery two weeks later in March where the chunk of disc was removed, the herniated disc material was removed, and the side of my L5 vertebra was shaved as it had been pressing on a nerve for 30-40 years. According to the surgery report, a hefty dose of prednisone was applied to the area before closing me up.

In mid-April we had another flood that was not quite as bad as the one in 2006 but still bad. The access road was under eight feet of water. We could not evacuate and remained at home for four days until the water receded.

June 2007 was traumatic as my Dad had to have emergency brain surgery and died five days later. A few weeks after that my sister was visiting from New York. Whenever she visited we put our cats in the cellar because she had a rescued Pit Bull who always wanted to eat cats. This arrangement worked successfully for eight years. Only this time my husband accidently opened the cellar door and my cat Ben came upstairs. In less than a second the dog was across the house trying to eat my cat. Somehow the cat was saved but was in terrible shape. After countless emergency hospital visits Ben's hind leg was amputated and he started to mend fast after that. A few weeks later we went to Tunbridge for the last time to pass papers on the camp. Although I didn't want to sell it, I knew neither my husband nor I could keep up with the maintenance on it.

In retrospect, I believe that the current Lyme infection really started during the 2006 Mother's Day floods. The ensuing traumas and prednisone doses probably encouraged the Lyme to multiply until I had full-blown disseminated Lyme Disease.

I also believe I may have had tick-borne illnesses dating back to 1991 when we had an abundance of ticks that spring. I found attached dog ticks on both my daughters and me. My PCP told me not to worry since they weren't Deer ticks. Within a year I was diagnosed with Fibromyalgia. In Septmember of 1998 I came down with a strange virus after a weekend at our camp. I had a very sore throat and a fever of 104, which was high for me. A few weeks after the virus went away I started having weird symptoms. My resting heart rate was 150 and I just didn't feel right. I was dizzy or lightheaded, my eyes hurt and I had unbelievable heart palpitations.

I was diagnosed with subacute thyroiditis but my PCP didn't want to do anything about it even though I was severely hyperthyroid. I finally went to an endocrinologist but by then I was hypothyroid and had to go on thyroid medication. A few months later I developed tinnitis. Between 1992 and 2005 I had many episodes of neck spasms. I have had lower back problems for most of my life so I can never be sure if my back pain is anatomical or caused by Lyme Disease.

Annie, New Hampshire


  1. Wow! Another story of what terrible things Lyme does to the body. Thank you for sharing this with us and I pray that you are doing better now...this disease is so devastating to the body, mind, and soul. So glad we have places to go to share of journeys and learn and unite together.. God bless you.

  2. Thank you for your comments Renee.
    I thought I would give a little update. I have begun getting conjunctivitis and have had it 3 times in 6 weeks. I am also getting mystery stomach ailments even though I have been gluten free for a year and a half. My back has gotten worse and now my spine surgeon is recommending spinal fusion surgery. My Lyme doctor thinks I do not have Lyme anymore. I still have tinnitis and am a poor sleeper. My fatigue is worse too.
    I do have a lab slip to get a CD57 lab test and will have that test done soon.

    Annie aka berylmom on twitter


Note: Only a member of this blog may post a comment.