My ordeal with Lyme Disease began when I was infected in October 1989 on a trip to New York. Unfortunately I was unaware I had been bitten by a Lyme tick, though I returned home to Twentynine Palms, California with a rash on my forearm. We had never heard of Lyme disease at this point and it was nearly two years later that we would hear about it.
At first I had flu like symptoms and as a pastor had to struggle through the Thanksgiving and Advent season. I had assumed that I had a bad case of the flu and would just have to get by till it passed. I was terribly worn down by January when I first saw a Doctor. He too said I just had the flu and to take it easy.
A couple weeks later I went back with severe chest pain and after an Xray he said I had possible pleurisy and gave me some antibiotics. I had some improvement but was still not back to normal. I was scheduled for a 6-week visit in Argentina in April with the Rotary Club and made that trip with a relapse in the third week. I was staying with a doctor in Buenos Aires who gave me more antibiotics and I felt better in a couple of weeks.
That lasted until June when the most incredible headache I had ever had hit me like a ton of bricks. I ended up in the ER and had every test run. Blood tests showed ongoing infection, but none of the usual culprits. They again put me on oral antibiotics and sent me home. I began to feel better, but once again symptoms returned with the headaches untouched by any meds. I had new found respect for migraine sufferers.
Unable to get a definite diagnosis and definitive treatment, with my strength and vitality gone, I was forced to go on disability leave from the church on February 1, 1991. The hope was that I would be able to rest up and beat whatever it was that was afflicting me.
About this time I was tested for Lyme because my doctor read a journal article and he said it rang lots of bells. It was now 18 months since infection. When it became apparent that I was not going to be eligible for appointment to a church in June of 1991 my depression became severe.
I had been to over two dozen doctors with no breakthroughs. When I was diagnosed with Lyme disease I had doctors arguing back and forth whether they "believed" that Lyme was possible in California (as if no one ever travels to endemic areas). I asked if I could see a psychologist or counselor and was told by my doctor that the medical director refused to refer unless a patient had a gun to his head.
I very matter-of-factly told my doctor that I had a gun and I would point it at whomever I needed to in order to get the care I needed. I later learned that my doctor left medicine, in part, because of how helpless he had felt within the HMO system to access care on my behalf. My wife was told by the medical director of the practice that I was "unbalanced." (We all knew that... Yet, I was no longer my usual smiling "unbalanced" self!)
After Pam asserted that a mental health professional should make the determination of my mental state we were finally referred to a psychologist. She determined that my state of mind was such that I needed in-patient treatment. We arrived at her office with bag packed only to be told that the medical director was referring me to a psychiatrist for a second opinion before he would authorize hospitalization.
At this point I was referred to a very compassionate psychiatrist, whom I still see to this day. Time and again, the HMO has refused to pay for the care I receive from him, but we pay out of our own pocket when that occurs. Because the one thing we have learned is that continuity of care with a principal physician "advocate" makes a big difference in the "system."
This doctor advocates for me with my primary care doctor and the HMO and with 20 years of history they cannot rebut his expertise in my case. They try to break that chain of care by denying payment, in order to save themselves money. Fortunately we have the means, but how many others have suffered needlessly because of the broken system here in California and elsewhere?
Believe it or not, I've even had insurance company private detectives follow me with cameras as I took my kids to school in the mid '90's. I saw one of the videos in the early 90's; I think they try to prove you are not really sick. It backfired I think, as I was quite clearly impared on the video.
About this same time we were referred to an infectious disease doctor. She had done her work at Yale and only just recently come to the desert. She had first-hand experience with Lyme. It was she who helped us backtrack to our trip to the Norman Vincent Peale Center in the village of Pawling in Duchess County, New York in October of 1989 and recall the telltale erythema migrans rash we noticed after our return. After years of being told by medical professionals, "We don't have Lyme in this area," we finally knew when this all started.
Nuclear brain scans and brain function tests at UCLA confirmed brain infection and permanent damage. So, I guess in a sense they were right and I was "unbalanced." Had I walked in to the doctor with a heart condition or diabetes I would have been treated. But, Lyme was a disease the medical community was and still is at war about.
It seems there are two extremes, on one side are those that say it is easily cured with oral antibiotics and on the other side those who believe that untreated patients will later require long term I.V. antibiotics sometimes with no clear cut resolution of symptoms. I went through three different month long courses of I.V. antibiotics at home, and one when I was hospitalized in Lancaster, California as well.
Over the years we also found a terrific doctor, a 200 mile roundtrip from Hemet. He is Swiss, a graduate of the Pasteur Institute and willing to actually “practice medicine” by hypothesizing new approaches. I received regular injections of B-12 and testosterone and that didn’t include all the pharmacological treatments. He brought us great improvement in my symptoms.
Then in 2003 we were at a family reunion on a family farm on Kent Island in the Chesapeake with my wife, Pam’s family. When we returned home, my ten year old son Christian came to me and said he was feeling achy all over and very tired. I felt his forehead and he was feverish. For some reason I was prompted to say, “Take off your shirt…” I knew that Lyme was a problem on Kent Island and there was a possibility of infection. But now, as he removed his shirt he revealed three erythema migrans rashes from his waist to his shoulder.
Erythemia Migrans (bullseye rash) on Christian's left shoulder:
I share this just to say, “If the only reason I was infected with this disease was so I could spare my son the years of grief it has brought me, then I would willingly go through the experience again.” Over the years, I’ve become a resource to many people who were also infected and received late diagnosis. I've also urged others who had a current erythema migrans rash to get to a doctor immediately. So, I guess in spite of the tremendous downside of this chronic illness and its adverse effects on the quality of life, because of my own experience, I have been able to help people. For that, I am very grateful.
Randy Gibson, California