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Lynn L's Story

Lyme Vaccine Volunteer

Written by Lynn Lane

I am writing to you in hopes of disclosing to the public the definite possibility of severe adverse reactions to the Lyme vaccine. My husband and I are living examples of what can happen to a person living on Cape Cod - or any other endemic area for that matter. Totally unaware that we had a long history of Lyme or “Lyme-like” symptoms, we volunteered to participate in the Smith-Kline Beecham 1995 Lyme vaccine trial study. I was forty-one years old. We live in a wooded area and have many animals.

My sister and her daughter had been quite ill with Lyme (they live on the Cape, too) and my husband and I were very interested in the study. Originally, we were supposed to receive $350 for participating, but once signed up, that proposal was withdrawn. We figured, “Oh, what the heck, it’s for a good cause.” We had blood drawn, and by Western Blot testing were told we were all set to receive shots. So it began. Our first inoculation was March, 1995. The second inoculation (or first booster) was in April, 1995. I was seeing a chiropractor at the time for neck and back pain.

The chiropractor noticed a decline in my physical well-being after receiving the vaccine. I thought at the time it had nothing to do with the vaccine, even though it was a double-blinded study. The chiropractor did not agree. He was concerned. That summer of 1995, on July 4th, after a busy day playing an hour of volleyball and walking two miles or more to and from the fireworks, I went to bed pain-free and with no injuries, only to wake the next morning with an extremely swollen left knee that I could not walk on.

That was the beginning of missed work. At this time, I naively did not know that my knee problem had anything to do with the vaccine. I just plugged along - what else could I do as the mother of three children ages 15, 12 and 5? I attributed it to growing older. However, after the third inoculation (second booster), which I received March, 1996, within two days I became very , very ill. Having suffered PMS all my adult life, I thought maybe this was the reason - but something was different this time.

Something was terribly wrong with me. I decided that maybe the chiropractor was right, so I began my research on the subject of Lyme disease and its many symptoms. With every piece of literature I read - books ,cases, testing, causes, cures, controversy, etc. - I became increasingly concerned. So many symptoms were just like mine. I contacted the doctor from the study who had administered the inoculations( Dr. Tratt), and he agreed for me to come to his office for an evaluation.

Waiting for the doctor while my four-year-old played near the window, I went over and over in my head just what symptoms and concerns I would speak to the doctor about - rashes on my face and body, severe pain, anxiety, nausea, chronic fatigue, numbness and tingling of extremities, buzzing in my head, brain fog, etc., etc. I expected to be given more blood tests and discuss reasons that would explain my symptoms.

After Dr. Tratt quickly looked me over, obviously irritated at my son for touching the blinds, he dismissed me by saying, “You just have PMS and have also been scratching yourself - you don’t have Lyme disease.” I left the office in tears, thinking, “Oh, My God, what have I done?” I am NOT a complaining person by nature and it took a lot for me to go see this doctor. I just don’t worry about things, but now I was worried.

I then chose to order my own Western blot through the chiropractor. The results were sent to an infectious disease doctor at Boston University Medical Center, on the advice of a representative at the Lyme Care Center in New Jersey, I had called. The doctor at B.U. Medical Center called me and said I did indeed have Lyme disease, and that I had it for quite some time. He also told me that the vaccine alone could not have given me this test result. He sent a letter to Dr. Tratt telling of both his clinical and serological findings. I in turn sent a letter to Dr. Tratt requesting treatment as well as withdrawal from the study because I was so ill.

He would not treat me and refused to help me find out what my blood tests showed prior to inoculation. He wanted me to stay in the study until October, 1995 so I could find out what was really wrong with me. I said, “but I’m sick now - that’s six months away!” The doctor at B.U. Medical Center was willing to put me on oral antibiotics proceeding an appointment with him in June. The orals were continued until September, 1996, at which time I decided to attempt an appointment with Allen Steer, MD, the principle investigator in the SKB Lyme vaccine study.

This was done on the advice of my legal representative from New York, whom I acquired by referral from the Lyme Care Center in New Jersey, also. The attorney was hoping Dr. Steere might “come clean,” so to speak. YEAH, RIGHT! He diagnosed fibromyalgia, handed me a brochure with information about fibromyalgia, and said, “Good luck.” After the x-rays and being stuck with needles, I knew I had gotten nowhere. Driving was extremely difficult for me, and it had taken so much from me to drive 1 1/2 hours to Boston. I had to stop twice for fear of passing out.

I was light-sensitive, prone to migraines, had to tolerate severe migrating pains down my left leg as well as my hips, ribs, shoulders and both arms. I also had intermittent diarrhea, inability to speak correctly or recall what I said or did a few seconds before, etc., etc. Many of you know the symptoms - I don’t need to list them all. Every single thing in my life became excruciatingly difficult if not impossible. I felt useless, and to top it off my research into Lyme disease lead to the discovery that all three of my children as well as my husband also had Lyme disease.

We are all being treated by the doctor at B.U. Medical Center. I was forced to share even this - a disease I couldn’t just deal with on my own. To be sick and have to take care of a sick family and try to deal with the mounting bills because of the loss of income is the most draining experience of my life. My husband began his treatment -- thankfully, his symptoms were not a severe as mine. He was eager to learn in October, 1996, if he had received the vaccine or the placebo in the Lyme trials. Still not hearing from them by December, he finally went in to see the doctor connected with the study.

The doctor would not tell him if he received the vaccine or the placebo, and said, “If you want to find that out, go get a lawyer.” I was RIPPED!!! Through our attorney in New York, we did get SKB to admit that I had received the vaccine, not the placebo (as if I needed anyone to tell me!), but when information was requested about my husband, SKB wasn’t quite sure if he had received the vaccine or placebo. Funny how that happens!

I was on oral antibiotics for one year, with some improvement, until March 1997. We then tried IV long-line catheter to my heart for four months, changing medications once after the first two months. My twelve year old was also on IV’s for three months at the same time. NOT FUN!! Stress was high because mommy could do so little. The pain became unbearable, and I was sure that I would die. I actually wrote a living will.

In July, 1997, I did come close to dying - my liver functions (AST and ALT) went in to the thousands! The norm is 0-31. I couldn’t eat, sleep or drink anything without vomiting. My temperature stayed at 103 degrees, give or take a point or two. I was in constant pain. Every exhale in my breathing was a moan. Most of the time my body temperature ranged from 94.2 to 97.6 degrees normally. I was often cold in an 87 degree room, bundled with sweaters and blankets.

One night, I awoke two hours after going to bed with my body shaking uncontrollably. I couldn’t talk for fear I would bite off my tongue. My husband scooped up our youngest and managed somehow to get me in the car to take me to the hospital. We were petrified that I was dying! This was the second “hospital run” for me. The first was almost as scary, but my liver functions that first time were only 100 and 81. In five hours time at the hospital, they did nothing for me other than taking blood. Thank God for a friend with Lyme who was with us at the hospital. At least she was supportive and brought me water. I’m sorry to say that she died from Lyme disease a few months later at the age of 48.

Home I went after the tremors subsided. The pain continued, and I refused to infuse again. The IV line was pulled. In December, 1997, just before Christmas, I had to have my gallbladder removed. Through all this, I have lost over 30 pounds and have endured much pain and suffering. I feel I will never be as well as I was before being inoculated. Thank goodness the doctor at B.U. Medical Center was willing to help me and did not deny my symptoms existed as did the doctors connected with the SKB vaccine study.

I would love to know just how much money these doctors were paid to inoculate us. My major concern is for the thousands of other people who do not know my situation exists and that there are definite risk factors for anyone interested in taking the Lyme vaccine, considering there is no serological test yet available that will show a definitive result as to whether or not a person has Lyme bacteria in their system. Please be sure to be well-informed before you make a decision about the Lyme vaccine. To this day we still do not know with what we were inoculated, or how much we received.

Thank you for listening.

Sincerely, Lynn Lane

P.S. In late January, 1998, I received a letter from my attorney stating that there were fundamental flaws in the pre-trial testimonies of his key expert witnesses which proved to be fatal to my case. No more lawyer. So much for compensation. I haven’t been able to work for over a year because of my involvement in the Lyme vaccine study.

These doctors and the pharmaceutical companies are going to make millions of dollars on the vaccine, and I can’t even get a lawyer decent enough to represent me. Doesn’t anyone believe in right and wrong - or justice - anymore, or is everything all about money regardless of the consequences of human suffering? Please wish me well. Legally, I have until March, 1999 to file my case, but FOREVER I will be scarred for volunteering to participate in this study.

Lynn Lane

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