In October of 2009 I removed an embedded tick from my right hip/buttock and a couple days later I had a distinct bull’s-eye rash. I went to my Doctor the next day and he prescribed an antibiotic for 10 days. He also took some time to remove the head of the tick which was still deeply embedded. I questioned if I should be tested and he indicated that it was pretty obvious I had Lyme and that the test would only come back negative this soon after the bite. I was a little concerned as I had heard horror stories about Lyme but he reassured me that I would be fine as the antibiotic would kill it.
In January I had knee surgery (torn meniscus), and 2 weeks later came down with pneumonia and a terrible cough that lasted months. I saw my Doctor during that time. I also began to experience sore muscles in my right thigh. During my physical therapy for my knee, I asked the therapist if she would know why the tendons from my thigh to my knee were so tight and about the pain in my thigh. She suggested I check with the doctor. I assumed it was that I was favoring my knee and forgot about checking into it.
In April, I was still coughing and not feeling well in general. I attributed this to the pneumonia. I then was hospitalized for an atrial fibrillation. I had had a few of these in the past ten years or so and so I attributed this to high blood pressure and the fact that I had a cortisone injection in my knee three days earlier since it was quite painful still. I was in atrial fib for 4 days as they would not shock me out due to my cough.
As the spring progressed I began to have a regular headache that seemed to come up the left side of my neck. It was a dull throbbing headache. I also began to notice that during the day I was in a fog of sorts. It was at this time that I began to think that I was having adverse reactions to my BP meds. I went to both my cardiologist and my regular doctor and complained of the leg pains, headache, brain fog etc. trying to convince them to take me off the Benicar as these could be side effects. I was assured that Benicar was an important med for me and that I should weigh the risk/benefit. I mentioned my recent hair loss also. I joked that I could live with the hair loss at age 52.
Through the summer I developed a pain under my second right toe so much I had difficulty walking. I went to a podiatrist and he said I had a tight tendon and that I should stretch it and we had custom orthotics made. They didn’t help much and the problem got worse and the second joint in that toe is now arthritic. One day after a day of fishing on a boat I experienced double vision. I attributed it to the heat and possible dehydration. Over the next several weeks I noticed periodic double vision when I looked at something about 200 yards away. Again it was only fleetingly. Numbness and buzzing sensations began in my left thigh around this time also.
By late summer I began to have abdominal pain and periodic sharp stabbing pains through my rectum. The abdominal pain felt like cramping very low in my abdomen. Although I do not drink much alcohol, it appeared that there was a correlation. Generally, I felt worse if I consumed alcohol. I subsequently abstained and although my symptoms lessened, they did not disappear. At about this time I noticed my urine was very foamy. I googled it and became frightened as it suggested protein in my urine. I went to my GP with the issues and a CT scan of my gut revealed no obvious issues. A microalbumin test revealed protein in my urine. A colonoscopy was scheduled as I had never had one. Again, I complained of my symptoms and now the issue of double vision.
In October 2010, I had my colonoscopy and it revealed a couple small diverticula. The doctor advised I stay away from nuts, seeds, and dairy and he would see me again in about five years. He also told me to take Metamucil. Two days later I had another Atrial Fibrillation which I was cardio-verted out of it the next morning.
I had an appointment with a nephrologist in late October and I presented him with a detailed list of my symptoms as evidence that I was reacting badly to my BP meds. He was not moved and would not condone switching meds at that time.
My issue with the vision was weighing heavily on my mind as were the other symptoms and I decided to go to an eye doctor. Exam did not reveal any issues but I was told my vision needed the assistance of glasses and that I was probably overtaxing my eye muscles.
In January 2011 I began a nearly one month spell of diarrhea and severe cramping in my lower gut. I went to work one morning and it got so bad that I was convulsing with chills and pain. I got an appointment with the GI doctor and he thought I might have diverticulitis. He put me on 2 antibiotics and we had blood drawn. My blood work showed severely elevated white blood cells, low platelets and high bilirubin. My overall symptoms got worse for about two days and suddenly the clouds lifted and I felt wonderful. I told my wife I hadn’t felt this good in years. No muscle pain, no headache, no brain fog, clear vision, energy etc. At the follow-up appointment with the GI I told him he had saved my life. I got emotional in the office with him. About a week and a half later, after I had finished the antibiotic treatment the symptoms began to reappear. I was outside raking leaves on one of the few and early warm days of April and I thought to myself I should check myself for ticks when I got inside. The light bulb in my head went off and I remembered the tick bite of Oct. 2009. Could I have Lyme disease? That night I googled lyme disease and was blown away by the similarity of symptoms. I went to see my GP the following Monday and he listened to me and put me on a thirty day prescription of Amoxicillin. He said the best test would be to see if it worked.
After a day or so and now very concerned about the approach we were taking, I contacted the Naturopath that I see periodically and asked him to do blood work to confirm. He did. The results indicated a positive for Erhlichiosis. My GP swithed me to a 21 day prescription of Doxycycline. The Naturopath suggested the IGeneX testing which we did on Tue. April 26.
The IGeneX results showed Lyme, Bartonella and Erhlichiosis. I am seeing an LLMD in Ct. and so far I am seeing very good results. There are moments when I want to scream in anger over the worry, pain and discomfort of the past two years. And I worry too about any long term damage, but at the moment I am resolved to just take it a day at a time and work on getting well again.