LETTERS: LYMErix vaccine

Below are selected Letters to the Editor received through Feedback.

I read Pamela Weintraub's article about the LYMErix vaccine debate today with a fascinated horror because this article and all the others like it, along with all the testimonials from my stricken peers, are my nightmare come true. I was one of the test subjects for the vaccine back in the fall and winter of 1994. I did not participate in the SmithKline Beecham study; I was in the Connaught group, but the serum was the same and the testing situation was also the same. The vaccine was advertised as harmless - I have the original poster I responded to, to verify this. I volunteered because I was suffering from an autoimmune disease that was scary and debilitating, but I was still functional and wanted to stay that way.

I live in a highly endemic area and thought this would be good not only for me, but for all those who were afraid to "live" because of the fear of contracting Lyme. I was "screened" for Lyme approximately three seconds before I received the vaccine. I became ill three days after the second injection, and contacted the study people as they had required participants to do. I was dismissed as having the flu without even being asked to return to the hospital performing the research to be examined. This was in December 1994, and I have never had a "well" day since. By the summer of 1995, I required knee surgery and that was when the whole subject of Lyme came up again, by the doctor who performed the surgery and informed me he found Lyme spirochetes in my synovial fluid. This started me on a two-year odyssey to get treatment or some sort of help from the medical profession. I was written off as a paranoid lunatic who wanted to be sick. That was when my nightmare began - that this vaccine would make it to the open market because no one would listen to me, and thousands of others would wind up like me - mentally and physically ill, unable to work or have any sort of quality of life.

At my surgeon's urging, I found a doctor willing to treat me for Lyme and a lawyer willing to take on the drug company. I was not his first client, just his latest one. I was on IV antibiotics for two years, during which time I had surgery on my other knee and stopped working because I was required to use a wheelchair. The New York City Board of Education, where I was employed, did not want to accommodate me and I was too sick to fight them. My head cleared up from the IV, but my body never felt better.

LYMErix hit the commercial market and I started getting letters in droves from others suffering the same symptoms. The HLA-DR4 issue arose and finally I got up the nerve to be tested for it. The test came back positive. My lawsuit is stagnating because of the "causation" issue, and I still get letters almost weekly from new vaccine sufferers asking me to give them some encouragement. I have none. My last bone scan showed both ankles, knees, shoulders, and wrists are completely destroyed by inflammatory disease. An MRI of my back indicated I have the spine of a 80-year-old (I am 47), and now my hips are starting to go.

If the test group had been studied honestly, with adverse reactions being reported instead of brushed off, maybe LYMErix would not have gotten FDA approval, which was reluctant at best. If I had not been written off as a "psycho," maybe more doctors would have considered that this vaccine might not be something they wished to give to their patients. If the drug company was not so big and rich, maybe they would spend less time trying to thwart the lawyers suing on behalf of disabled clients and spend more of it searching for an antidote to this crippling injection. I wouldn't be lying in my bed making wall hangings I have no room to hang; instead I would be back in the classroom, where my students desperately are in need of dedicated people like me. Maybe if my lawsuit were settled, I could afford to hire someone on my own to find an antidote!

But the truth is that in this country, big companies rule and people like me are just statistics, not living souls who are destined to a life of hell because of a vaccine that might or might not prevent Lyme disease. The thing that really slays me is Lyme is so downplayed anyway, why do we even need a preventative if we are to believe the "experts" who claim there is only a 3 percent chance of contracting the disease in the first place, and if one does contract it, it is easily treated and "cured"?

Every time I hear of another victim, I feel personally responsible. If I tell you I stopped sleeping in the summer of 1995 and haven't had a decent rest since, you can believe it. I am not nearly as crazy as the experts would have you believe. There are at least 1,064 people who have had the courage to come forward and attest to that.

- Alison E. Schettini
July 8, 2001

You seem to have put into words what I have known for a while trying to get this vaccine off the market. I was the one that gathered the vaccine victims together for that meeting in January. We are still fighting to stop this pain this vaccine is causing. Thanks for such a great article.

- Jenny Marra
July 13, 2001