Bergen Community College May 29, 2008 Pat Smith, President, LDA www.LymeDsieaseAssociation.org
I welcome you tonight on behalf of the Lyme Disease Association to tonight’s event, Lyme Disease: Insights into the Crisis, Key Players and the Future. Tonight’s program is a departure from the traditional Lyme Disease Association medical forums which focus on awareness about research, the disease, and its demographics.
Tonight’s event came to pass partly because an exciting new book, Cure Unknown: Inside the Lyme Epidemic, is being released in a few weeks, and partly, because it is becoming increasingly difficult for patients to receive treatment for chronic Lyme disease. It is an unfortunate occurrence that patients must now not only be knowledgeable about their disease and both standards of care, but also be knowledgeable about the politics that are slowly strangling them and their physicians.
The only way to fight against such a political stranglehold is by amassing an informed force of patients not only nationwide but worldwide to fight those who would deprive sick patients of their treatment. Just this week, I read of a desperate father who raised $14,000 to hire a lear jet to fly his daughter from Canada to the US to get Lyme disease treatment as she is so frail regular airlines refused to transport her. I know that this story will resonate with many of you in this room who have completely had your lives changed due to Lyme disease, and you will hear a few individual’s stories here tonight of just such experiences.
I happen to be one of those individuals. Early in our marriage, my husband & I decided that I would stay at home and raise our three daughters until they were old enough to care for themselves, then I would go back into the workplace, probably back to education.
That was before Lyme. When Lyme hit two of our daughters, in the 80’s, we had little information and few to help us along the way, however, we did have some Lyme pioneers, and I am thankful for them and the guidance they provided.
My youngest daughter went from a happy, healthy, gifted 10 year old who lived to play soccer and excel in school, to a child who could not get out of bed, who could barely walk 20 feet. She slept 18-20 hours a day, and when awake, could tolerate no stimulus of any kind, even talking or watching TV. In the beginning, after her first treatment, she was “cured,” and what did I know then, I thought so, too. She continued to play soccer while getting treated, then went off treatment for a short while. One day, she went to bed and did not get out of it. When she relapsed, the doctor refused to give her a Lyme titer despite all my arguments, until he finally agreed that he would do so only after he gave her an entire battery of tests, all of which seemed unrelated to me, and until they came back negative. Then he refused to speak with me at all when I called to get the titer results, until I threatened legal action. Suddenly, then, he got on the phone and told me she was positive but that he was not “intellectually convinced” she had Lyme. I assured him I was not concerned about his intellectual opinion at all, and as a matter of fact, had already taken her to another doctor to begin treatment.
The long dark years began with IV, IM, orals, combinations. She was out of school for almost three full years by this time. But she rallied, and she was ready to go to high school! I remember how excited she was when a neighbor asked her to babysit, her first normal thing as a teen, a few days before school opened. The baby had a virus no one told us about. Her immune system was too compromised and within a day or so she backslid. No school for her. A few weeks later, she had
hallucinations; I was horrified, then came grand mal type seizures, and other visual, auditory, and olfactory hallucinations.
During this period, Congressman Christopher Smith whom I had been working with on Lyme disease, hosted the first congressional panel on Lyme, in my town in 1992. My daughter and I both spoke, she much more eloquently than I, although she was only 15, and barely functional. She got a standing ovation. She had wanted to talk about her seizures but the Lyme doctors said absolutely not, the state will come in and take your daughter away from you and she will not get Lyme treatment either. I was skeptical, but thankfully, followed their advice. Today we know moms are having their children taken away for long-term treatment–allegedly for Munchausen by proxy, making their children sick.
After intense treatment for several months, her grand mal type seizures stopped, she was better and getting somewhat stronger. Then several weeks later, the disease took her and us to a depth I never knew existed. I liken it to Dante’s Inferno, circling down into Hell and thinking we had experienced the worst and finding there were levels far beyond what any human should see, especially in one’s own child.
She had episodes where she went into mental states where she did not know who she was, where she was, or who we were, or that we were even there. “They” were coming to get her. She often awoke with blood curdling screams in these states, and once I spent hours assuring her to no avail that she did not have 6 fingers on one hand but five, and another time she repeated for hours that she wanted to go home, yet we were in our house in her room. She became mentally unreachable for what became 15 hours day/ 6 & 7 days a week for three years. I slept on the floor next to her bed many times, the little sleep I got. I never knew who would wake up and when, my beautiful child, or some screaming stranger who had taken over my daughter’s body, or a zombie like individual who stared off into some unseen world I was unable to comprehend or penetrate. So serious was her condition, that while she slept, I often would check to see if she were breathing, just as a new mother does with an infant. Meanwhile, my mom developed Hodgkin’s Disease and my dad, Alzheimer’s.
I wonder to this day if it were the result of the Lyme disease they had each contracted over time, both had bull’s eye rashes, although they never told me until way after the fact, I am sure thinking I had enough on my plate. Now we cared for my parents, too, and they would compare their arthritic symptoms, my then almost 80 year old mother with Rheumatoid Arthritis and my teenager, when she was lucid, which was increasingly less.
I found a doctor six hours away who was doing some new work on Lyme disease, and with great trepidation, we drove there and he was able to identify my daughter’s episodes as temporal lobe seizures. I was ecstatic, I had a name for what she was experiencing. I looked up and called one of the doctors in the US who specializes in temporal lobe epilepsy, and I described her manifestations. He said, “congratulations, you now know more about temporal lobe epilepsy than most doctors in the world.” Knowledge was power, and I hungered to explore the links between neuroborreliosis and seizures, no mean fete in a time of no internet.
The doctor who recognized the seizures as such gave us a number of things to try and we coupled those with other medical interventions affecting other body systems and slowly she was able to overcome her manifestations. Finally, in grade 11, she entered school for the first time since grade 6, although only a few hours per day. It was a victory. As she progressed, she could do more and more physical activity, but she never went to school full time, even senior year. Yet she graduated #6 in her class and I remember the day she got her acceptance letter and money offer from Johns Hopkins. I wondered who that person was that was screaming—turns out, it was me and her, for joy this time. My thoughts were, Lyme disease, we have beaten you.
She went to Hopkins and had a normal life there for the first time. Of course childhood was not to ever be returned to her, but she dated, worked, drove, volunteered in the inner city, and carried a full course load. She had about a 4.0 GPA. Then Lyme reared its ugly head. She started seizing again, her roommates took care of her. She did not want to come home. Then, she was attending no classes, seizing randomly. I was balancing between being a responsible mother and letting her have the freedom we both worked so hard for her to have. We played the game Lyme parents and older children often play on the telephone: The “How are you today, I am fine,” game, when I knew she was unable to function and she knew I knew. Finally, I could not responsibly allow her to stay there and picked up the phone to reluctantly tell her she must come home. She called at that moment to tell me the same. It was a sad day. I picked her up that Nov. day and she was in seizures almost my entire three+ hour drive home.
She went on IV in late November. The seizures stopped. The plan had been to take the spring semester off and then back in the fall, as Hopkins held her place. Instead, come Jan. scant weeks after coming home, she went to January intercession classes–then back to Hopkins for the spring semester and then to summer school classes closer to home. She made up her entire semester she had missed, and in the fall of senior year, went to London for study abroad, which she was to have done the previous spring. She enjoyed London, and me, I was still a Mom and worried, so I got a passport and went to visit her after my mom died.
Somewhere along the Lyme journey, the power shifted from Mom in total control (or so I viewed it) to a 51-49 split in her favor. She was an adult now and responsible for her life and health. We joked about it, but no doubt, I was still responsible for the worrying. She graduated Hopkins on time with honors and phi beta kappa, surely an example that refutes those who say that Lyme patients want to be sick.
Today she works on a medical publication, and lives and works like there is no tomorrow. She even plays soccer 20 years into the disease, something she told me she would do if she was even well enough to do so again. She does not look sick, and those who have experienced the ravages of this disease know that is perhaps one of its biggest curses. Denialists would look and say, she is fine, she looks good and could not be that sick and play soccer and have a job. Many of you here know better and know that only the most stubborn and spirited survive this disease. However, she now has heart damage due to Lyme and other serious systemic problems, but she has a life thanks to treatment.
I am here because I so admire her courage and strength and that of others like her around the world that I hear about, and so I cannot leave. My thoughts of being in the workforce in education were replaced with volunteering for Lyme disease, and I have been involved for 22 years, and I believe today actually begins my 12th year as LDA president. I have closely observed and been a caregiver for diseases and conditions from Type 1 diabetes, I have a daughter with it, to Hodgkin’s, Rheumatoid arthritis, congestive heart failure, osteoporosis, spinal stenosis, thyroid disease, kidney failure, Alzheimer’s, and others.
What sets Lyme apart the most is not the disease itself but those who would profit from its misery and prevent sick people from getting help, and those who would prevent science from uncovering the answers. That is why I am here tonight. We need to change that picture, and it can be done by spreading the word about the politics as well as the science of Lyme. We have a noted panel to help us do that, and at this time I will introduce each panelist who will provide a somewhat personal introduction into why and how they are here tonight. Then the panel will interact with one another, and that will be followed by a question and answer period from the audience.