Now I was Free?
My Story As a Vaccine Trial Volunteer
by Clare Bennett

In 1991, I discovered a tick embedded in my right breast. This was my introduction to Lyme disease, something with which I would become all too well acquainted. I was treated with an antibiotic for two weeks, then contracted Lyme disease again a few months later. Doctors were not yet fully knowledgeable about Lyme disease. I was misdiagnosed several times.

My third rash was on my back. My husband noticed a large, red spot. Within a few hours, it was extremely sore and hot. I could barely sleep. My lips developed a funny tingle, every joint ached, and I was exhausted. I went to a family practice center, and they thought it was a spider bite.

For a second opinion, I went to a dermatologist, where I was also given the diagnosis of an arachnid bite. I was given a Lyme titer, which came back normal. I was on my way to learning how ineffectively Lyme disease is diagnosed and treated.

I pressed the doctor for antibiotics, since I seriously suspected Lyme. The next day I broke out in a rash on my chest and changed medications. I thought that it was the medication causing the rash. The bulls-eye continued to grow. By the time it began to dissipate, it circled from my neck to my hip and around my chest and abdomen, a diameter of 22 inches. I had joint pain and fevers and an all-pervasive exhaustion.

When I heard about the vaccine trial, I was overjoyed. My husband, daughter and I  signed up for the trial held by Connaught laboratories in March of 1994, which was administered by Westchester County Medical Center (WCMC) in Valhalla, New York. We were screened by questionnaire and blood samples were taken. We then received a vaccination, followed by a blood test and a second vaccination a month later.

I kept records of my tick bites, and I mailed any ticks found embedded to WCMC. My third infection was precipitated by a bite on the back of my knee while I was still a patient in the trial. I notified WCMC, and they had me come in so they could take pictures of the rash. I also took pictures per their instruction, and measured the bulls-eye.

When I gave them the pictures, they appeared to be disappointed and told me that they preferred the pictures I had taken of my previous infection - as if this were a photography contest? I mentioned the secondary rash on my chest and was told, "That's not Lyme". I told the doctor in charge of the experiment that I had the secondary rash before and that it was from the Lyme and not the medication, since I get it no matter what antibiotic I am taking. He said "No it's not". I said "Yes, it is". He said, "No, it's not." This went on for a full minute. He was actually denying what I was telling him without entertaining the possibility at all. I knew I was in trouble then - that I was dealing with people who were not necessarily competent, since even I had heard of secondary rashes in Lyme.

I quickly tried to find out everything that was known at that time about Lyme disease. I then went to my own doctor for medication - the doctor who had successfully treated me for chronic fatigue syndrome. I took 1000 mg. of amoxicillin (I can't tolerate doxycycline) three times per day for six weeks rather than the two to four weeks ordinarily recommended. All of my symptoms disappeared, just as they had each time I had Lyme. I am very fortunate that I have not retained any noticeable negative effects other than perhaps an arthritic knee.

The vaccine trial administrators notified us in 1995 that a booster injection was now required. This was not originally in the vaccine trial plan, but is something I assume resulted from the high numbers of people within the study still contracting Lyme disease. I survived 1996 and 1997 without Lyme. I was informed that year by Connaught that I had received the vaccine and not a placebo. I was so happy to know that I was at last safe from the enemy in my own backyard. I had always been a  gardener, from the time I was eight years old and uprooted some wild lilies in a field to put in my own yard. It broke my heart to stay in the house summer after summer. But now I was free!

In June of 1998, I developed a small rash under my left arm. I had pulled two ticks from my groin area that week. I thought the rash under my arm looked like chafing from a sleeveless blouse. The next day, the rash looked bigger and started to itch. I thought, "Must be poison ivy". Two days later, I had this hard sore lump in the glands under that arm. I became suspicious! Two days after that, the rash was a definite bullseye and was hot and sore. I knew then that I had Lyme again.

My husband and I were leaving for vacation the next day, so I put myself on amoxicillin. When we returned home three days later, I stopped at WCMC to have the infection site looked at. There was no one there to see. They told me to come to their clinic later that night, but it would cost me money - at least $170. I told them that I had been a part of their vaccine study, which paid for any incidences of Lyme incurred while taking part in the trial. They replied, "That's over". I said, "Is there no one here I can see?"  "No."

I asked for the number of the research assistant I had been in contact with throughout my knee infection. When I called, she was on vacation. I asked her assistant for advice on what to do, telling her I had Lyme again despite the vaccine. She said, "No one said how long it would be effective". So here I was again, fighting this battle by myself.

I called the research assistant when she returned from vacation, and told her I had Lyme again, and she said, "So?" I tried to take pictures but it's hard to take them by yourself. I knew I had to document my infection, but how?

Doctors don't recognize Lyme disease. The test results are always deceptive at best. I had already been misdiagnosed four times! Now, after receiving the vaccine, the test results are even more unreadable. No one is quite sure how to read my Western Blot, since I will always register positive with the vaccination.

I realized I could only depend on me to take care of myself. So, I started taking amoxicillin, hoping that would knock it out of my system. The rash had now faded, but I felt lousy. My knees ached, my lips and tongue felt numb, and I had to sleep every afternoon from 3:00 p.m. to 6:00 p.m., because I'm so tired. Please, God, let this just be the Herxheimer effect! I am so weak in the afternoon that I can barely walk, and now the roof of my mouth is also numb.

I went in to see my doctor yesterday and tried to explain my situation to the physician's assistant. I went in fully armed with documentation of all my bouts with Lyme. I asked for the antibiotic, Zithromax, which I had heard was the current drug of choice, but I was told that was not a preferred antibiotic for Lyme disease. She put me on Ceftin. I wish I had gone on the Internet to the Lyme Alliance website before the appointment so I would have known which antibiotic to request.

I asked to be given the Lyme Urine Antigen Test (LUAT), since I had already been on antibiotics for ten days and was feeling worse than ever. I am now awaiting those results, but as any Lyme sufferer knows, I am more of an expert on Lyme disease than the "experts", and am sure that is what I am suffering from now.

The only support I have received in these seven years was when, in desperation, I recently sought help over the internet. I only wish I had done that years ago! I told my story and received many letters in warm response. My goal at this point is to let people know that the vaccine did not work for me......or, if it did, it is for a limited time. I was not informed of that fact. I believed that I was protected and I was not.

In a recent conversation with Clare, she said that her LUAT had come back negative for Lyme disease, and her doctor's were testing for other tick-borne diseases.

This is our third article relating experiences of vaccine trial volunteers. We feel it is extremely important to let the public hear all information connected to the vaccines. If you know anyone who would like to share their experience, please have them contact us. Our sincere appreciation to those who have been willing to come forward with their stories in order to help others in their decision to use the vaccines when available.

For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

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