I had been suffering from Chronic Pain for 5 years when I first heard about the trial Lyme vaccine. The pain was the result of a particularly nasty case of shingles that developed after a 3 month course of steroids I was given to treat a mysterious case of hives that began in September of '89 and lasted well into '91. After developing another suspicious rash on my back in the summer of '94, I became very nervous about contracting Lyme Disease because to make a long story short, life was already close to being intolerable, and I didn't ever want to see it get any worse. Westchester Medical Center was advertising the experimental vaccination in conjunction with Connaught Labs. It was touted as being "totally safe", so I decided to volunteered for it.
I told them about the rash, which had eventually been diagnosed as either "ringworm" or "psoriasis" by my physician, and I told them about the shingles which even I knew indicated that I had (or once had) a compromised immune system, but they said that wouldn't be a reason to eliminate me from the Lyme study, and injected me with the first booster in October of '94. The thing that bothered me from the start was that they were very concerned with the possibility that their female subjects might be pregnant, and inisted on testing me for that possibility even after I stated it was not possible, but did not do any pre-screening for Lyme Disease. I was tested for Lyme about 4 minutes before I received the vaccine. I questioned that because in order to be eligible for the vaccination you had to be "Lyme free" and I was not convinced the rash was actually ringworm OR psoriasis. I even showed them the remnants of the much-faded rash on my back. However, they did not feel this would pose a problem and they included me in their head count of 250 subjects for this particular phase of the study. I signed an "informed consent", which stated that they were not sure what the results of the vaccine might be but I should expect nothing more significant than redness and/or swelling at the vaccine site. The consent also stated that this was not a blind study, and a placebo would NOT be used. Instead, they were testing 4 different lots of the vaccine, one including a preservative. The consent also stated that if anything was to happen that was connected with the vaccine, including a car accident, they would be responsible for all resulting medical bills, and there was a number to call.
I had a second booster in Dec. and started running a very high fever, of 103 + about 3 days later. The thing I remember most about this illness was that I had a really wicked sore throat, and severe joint pain. I was very ill for about 10 days. As per our agreement I called WMC. They called it the flu. I never really recovered from that illness but the symptoms were vague; I knew i didn't feel right but I couldn't place my finger on what was really bothering me. I knew I was very distracted and also very depressed and by that May, I was ready to go out on Disability because of an inability to concentrate. Disability was something I would not even contemplate before that time, for ANY reason. Now, all I could think of was not having to go to work anymore. Aside from the mental fog, I was experiencing terrible burning pains running up and down the outer right side of my body, like one nerve root was setting off another nerve root, and the pain was running from my neck to my foot. I remember going to the doctor and getting so hysterical as I begged him to do something to help the pain, that I was ashamed of my behavior and I apologized profusely. I had never lost it quite like that before and it scared me how out of control I was. He put me on a 16 day course of very high levels of steroids and finally the pain started to subside.
By the summer, I became aware of the fact that I wasn't sleeping at all and every joint in my body constantly ached. We even bought a new mattress and bedspring in an attempt to get me some sleep, but that didn't help. I was still very distracted and depressed and I did go ahead with my application for Disability, claiming the chronic shingles as the reason. My doctor documented that the year I first contracted it, there was a Chicken Pox epidemic in the High School where I taught, and this was the basis for my claim. We decided to go away and see if a vacation would change things. We went to AZ and as I stepped off the plane, my right knee started hurting so severely I could barely walk. I thought I must have caught a cramp from sitting for so many hours, but as the vacation went by the pain grew worse instead of beginning to subside. By the time we left to return back to NY, I could barely walk. When we returned, I went to my internist, who took an X-Ray and claimed I had developed arthritis. I remember thinking it was mighty weird that I would all of a sudden develop arthritis, especially in AZ, of all places. It continued to worsen, so I went to my orthopedist, who said it was filled with fluid so he tapped it. While I was waiting for the fluid to be analysedI had an MRI. It showed severe arthritis and deterioration due to inflammation. He also said he found evidence of Lyme in the fluid. He scheduled me for surgery and had me go back to my internist for a Lyme titer. At this time I mentioned the vaccine to my internist in terms of how it must not have taken. Unknown to me, the internist must have contacted WMC, because the people who were running the study called me the next day and asked me to come in. When I got there, they wanted to know why I hadn't called themto tell them I was having problems... I ignorantly asked them what my problems had to do with the vaccine, and why on earth would it ever occurr to me to call them...I was given an appointment with John Nowakowsky, doctor of infectious diseases, three days later. I asked him what the relevance was between the vaccine and the symptoms I was experiencing, and he started giving me this story about the way 3% of the population who has a vaccine gets the disease. Then he told me not to worry, however, because "they" would take care of me for the rest of my life. I asked him if he was trying to tell me I had contracted Lyme, but he never answered, just reiterated that "they" would take care of me. He then took a series of blood tests, and I left.
My orthopedist consented that the fluid removed during surgery would be sent via messenger to WMC, as per their request. I had the surgery. The damage to my knee was so extensive, I required a total synovectomy. I also had a tissue study-indicating inflammatory disease consistent with Lyme. The nurse at WMC called me and told me the blood they tested came back negative for Lyme, and wasn't I happy to hear that I asked her what the synovial fluid showed, and she said she had no idea what I was talking about, that she never received any synovial fluid. I told the the ortho what I had been told about the fluid never getting to WMC and he said she was "a damned liar" and I should get a lawyer...he also said I had better get someone to put me on antibiotics before I was in even worse trouble. I called the nurse back, agitated about the conflicting stories and so she gave me an appointment with the doctor in charge of the study, Gary Wormser. He said he didn't want to be my doctor, he wanted to be my "friend". He admitted to receiving and testing the synovial fluid but he said those results were "spurious", that synovial fluid was not an accurate substance to test for the presence of Lyme. He also said that he was surprised that I didn't test "false positive" for at least the vaccine, so chances were, my body hadn't absorbed it at all. I recounted what Dr. Nowakowsky had told me but he shrugged that bit of information off. He then said he suspected I had Diabetes and Fibromyalgia but as a courtesy, since I had "helped" them with their study, and because he "cared" about me, he would arrange for me to see a rhumatologist. I told him I wasn't interested in seeing a rhumatologist, so he asked me what I wanted-and I told him I wanted him to treat me for Lyme anyway, with ANTIBIOTICS. He said while he had no OBJECTION to me taking antibiotics, HE wuld not give them to me. He told me he would speak to my internist and tell HIM what kind of antibiotics to prescribe for me. He asked me what my doctor's name was, and when I told him, his response was "He's my protogee, I taught that boy everything he knows!" He told me I could expect to hear from my doctor later that week...
After two weeks had gone by, I began to realize I was not going to get treated by anyone remotely connected to the vaccine study, so I started looking for someone who WOULD treat me. I wound up at Northshore under the care of Drs. Kaplan and Halperin...Dr. Kaplan tested me and did a spinal and then referred me to Dr. Halperin, who said I had "an acute" infection and if I had Lyme for as long as I thought I did, it wouldn't be acute. I asked him what HE thought I had, and he replied he was sure I was suffering from Hep C and sleep apnea...before he ever took any bloods. I realized he was not going to help me either. In desperation, I asked my psychiatrist to prescribe antibiotics for me. He called Dr. Halperin to ask him if he thought this was a wise move, and after speaking to him, he looked at me really strangely. I asked him what was wrong, and he told me that Dr. Halperin told him that he had spoken with Dr. Wormser, and I never even really had a vaccination. He told me that at this point I was going to have to prove I really had a vaccine in the first place, and that I was not being paranoid. I faxed him a copy of the protocol I signed stated there was no placebo being used in the particular test group I was in. He then admitted that he believed I had been harmed and I should hire a lawyer. Finally I told my shrink if he wouldn't give me abx I would kill myself .He called Dr. Kaplan, who admitted I had had a recombatint version of a vaccine and if I came back to see him, he would prescribe antibiotics for me. When I went back, Dr. Kaplan told me I had a "genetic" version of Lyme from the vaccination and antibiotics wouldn't help but if it would keep me from "killing" myself he would prescribe amoxycillin-but if I had any problems I should just stop taking it because it wasn't going to do anything anyway...I got a bad yeast infection and a bladder problem and was told I would have to learn how to catheterize myself 3 times a day and I just freaked. It was already June of the following year and I could no longer walk, think, read...
I underwent neuropsychological testing and that indicated that my verbal IQ was in the 95th %tile...but the performance IQ was in the 58th %tile (basically indicating retardation) and that this was evident of either schizophrenia or a severe inflammation of the brain. I eventually had to have a synovestomy of the left knee as well, and the orthopedist wants to fuse both ankles so that I would not be able to move the ankle joints, because the inflammation has literally destroyed them as well, and they are excruciatingly painful. I would not consent to this and I am now forced to use a motorized scooter. Aside from the joint disintegration, I developed narcolepsy, irritable bladder syndrome, hypothyroidism, requiring medication, gynecological problems requiring a D&C and a historoscopy and now the use of hormones, (endometrial hyperplasia)severe depression, anxiety, palpatations, mood swings like you would not believe, and now the Lyme has gotten into my hands and fingers. I wouldn't smell a skunk if it sprayed my legs, and I can't even wear my wedding band because the pressure of the gold against my finger feels like it is burning me.
I cry when my husband touches me because that feels like I am being burned as well...when he forgets and strokes my arm, or pats my leg, I have to turn away so he won't see the agony written all over my face. I have radiculitis in both legs and lie awake at night because the pain is so severe. Some nights it is hard to breathe, and I lay there, gasping for air and worrying that IF I fall asleep, I might not wake up...and sometimes I take comfort in that thought...
In August of '96 I finally found a doctor who was willing to treat me because he had also had the vaccine, and after doing so, suffered a stroke of the optic nerve and went blind in one eye; When he saw my records he told me NO ONE had EVER tested me for chronic Lyme, only acute...he said he suspected I already had Lyme going into the vaccine study...that it was probably the cause of the hives back in '89 and then it went dormant after the shingles episode, until it was reawakened by the vaccination. He sent my blood to IgENIX Labs in Palo Alto CA, where it tested positive for active Lyme, and for the vaccine; He and his wife, both respected Lyme specialists, have been teating me ever since...but there are no improvements as yet. The vacciantion I allowed myself to be injected with, was not the harmless one Westchester Medical Center advertised, but a VERY harmful one that they gave me anyway in a selfish attempt to win the their race against Smith-Kline, for being the first Lab to obtain the patent for the Lyme vaccine..
I now have a central line inserted in my chest for IV infusions of Zinacef twice daily; I am also on oral Zithromax and Cipro, bi-weekly weekly injections of Vicillin, Inderal, Tegretol, several different vitamins and herbs including daily B-12 injections, Remeron, Zoloft, Duragesic patches and Ultram, trying desperately to keep functioning but finding it harder and harder and I live in abject terror that one morning I am going to wake up and just not be able to make it out of bed. I no longer am allowed to drive because of the narcolepsy...I spend a good deal of time at work still shuffling papers from one side of my desk to another, and it is REALLY HARD to accept that I did this to myself because I actually believed that I was volunteering for a "harmless" vaccination. The physical and emotional changes I have undergone over the past 2 years have caused me to become totally alienated from my family and friends, and instead of being a vital, independent, woman, I am now a clingy, needy person who has absolutely NO confidence in myself. I have basically lost all my pre-Lyme friends. They are convinced I went over the edge. For a while there, while running from doctor to doctor trying to get one of them to treat me, I was convinced that maybe, indeed, they were right, and I WAS crazy. But now I am convinced that I was the victim of medical arrogance and greed.