Lyme Disease: A Diagnostic and Treatment Dilemma
Senate Committee on Labor and Human Resources
August 5, 1993
430 Dirksen, 10:00 AM to 12:00 PM
Mrs. Karen Forschner
In 1985 our only child was born. Unfortunately I had a bug bite and the full range of Lyme disease symptoms while I was pregnant, and soon after Jamie's birth his symptoms started.
During the pregnancy and after the birth I was seriously ill with multiple problems including joint swelling and pain. Shortly after giving birth a doctor told me that my crippling pain was arthritis and a permanent condition, but he expected me to remain on crutches until I required a wheelchair. However, there was this mystery illness called Lyme disease, and the doctors offered me two weeks of antibiotics just in case. If my symptoms went away, then I was cured and I had Lyme disease, if my symptoms remained, I didn't, and I would be wheelchair-bound for the rest of my life. At the same time all five of our beloved pets, three cats and two dogs, became seriously ill and required repeated hospitalizations. As fate would have it, all of us had contracted Lyme disease at the same location and time. Eventually all of our pets were lost due to their Lyme disease.
Jamie was the light of our life, he had blond hair, blue eyes, was always smiling. By the time he was six weeks old, his health was in question. He had repeated vomiting and eye tremors. By six months old, he was showing signs of brain damage, eye problems, possible deafness, and had ceased to grow properly due to malnutrition. I questioned the doctors about whether my son could get Lyme from me during pregnancy, and they guaranteed me, absolutely, no.
To understand this disease and what it did to our family I would like to tell you what it did to our son's brain. The bacteria attacked the part of his brain that controlled his eye movements, causing his eyes to swing rapidly back and forth, to turn inward at times and outward at other times; and he became light sensitive. This caused double vision, motion sickness, inability to open his eyes outside, and blindness. Jamie's facial and tongue muscles were also involved, causing his face to be partially paralyzed and droop, which is like a Bell's Palsy, resulting in excessive drooling, loss of speech, loss of the ability to eat or swallow, and allowed food or saliva to go directly into his lungs instead of into his stomach.
Children and adults started staring at him. The loss of speech frightened him. Feeding him by mouth became life-threatening, as repeated lung infections set in, and eventually a partially collapsed lung resulted in multiple hospital stays. Jamie could not tell us that he was scared, that he had a headache, that he was hungry, or that he needed to go to the bathroom. Jamie became mute, malnourished, and frustrated. His hearing was affected causing the hearing test to show - another blow to us - that he was profoundly deaf. It was only then when his speech started that we realized that the test was wrong and had been influenced by the damage done by the Lyme disease bacteria. He indeed wasn't deaf.
Jamie's stomach was involved, causing repeated vomiting, and since he was too weak to lift his head, we had to worry that he was going to drown. Jamie's nerve conduction was affected, which delayed the innervation to the muscles. This caused him to lose muscle tone and he became floppy. This meant that he couldn't sit, crawl, or hold his head up, and he certainly couldn't feed himself. The devastating state of involvements that are known to be Lyme disease involvements made Jamie 100% dependent for life. Tests, probes, biopsies, all could not pinpoint the problem. When Jamie was one and one half, he had surgery to realign his stomach in an attempt to stop the life-threatening vomiting. The surgery didn't work, and our son had a permanent hole cut in his stomach so that he could feed through a feed tube. Indeed, we only really needed antibiotics.
Tom's company, a CPA firm, declared that Tom no longer had that little zip that they expected for partners-to-be, and let him go. Today the family leave bill would have protected him and given him time to set his home life more in place.
As Jamie approached his second birthday, we found ourselves unable to provide the medical care needed, and were told to institutionalize him, or put him up for adoption, as there are families who are set up to handle multiple handicapped children. I turned into our son's advocate, no longer listened to what the doc said, and started searching the medical literature, and I realized Jamie had Lyme disease, I had Lyme disease, our pets had Lyme diqease, and trans-placental transmission had already been published. We fell through somebody's crack.
Then a doctor saw permanent damage in our son's eyes, damage caused by a congenital infection, one just like Lyme disease. We tested positive, we were told we would be cured, we got some treatment, and my life was good.
Unfortunately it wasn't quite true, and our son relapsed. The meningitis in his brain had caused his head to enlarge to the size of a fourteen-year-old, his clothes no longer fit, we had to get specially adapted clothing. As a little boy, the head still has room to grow larger when it's a lot of pressure, and the only time we had to worry is when his head stopped having that ability to enlarge. When his relapses were in process, his throat would collapse, and he would spend time on life support. Indeed, our lives were a mess.
Media people saw this child as a great example for some sort of TV little blurb in sound bites. Indeed, I think that what we saw was a child that was courageous and might indeed help other people learn a little bit about this disease, and maybe, God forbid, yeah, maybe he might be able to get some funding from the government, so there would be answers before he would die. Indeed, when I saw what was happening, when Dan Rather had him on television and showed the story, not of what I saw was a courageous story, like the courageous stories here, but all of a sudden a story of what was termed "every parent's worst nightmare".
Indeed, he wasn't the worst nightmare, and we hadn't gone through the worst nightmare yet. Those words will always haunt me. And then the nightmare began. Indeed, he was on life support many times, and when he received treatment he would recover, his vision returned, his speech started, he started to feed by mouth, the vomiting stopped, he gained weight, his lips could kiss, and his arms could hug, but despite the dramatic and documented improvements, over the years local doctors and health officials would interfere repeatedly with our son's re-treatment. Indeed, it was an obsession to make sure that our little boy didn't get treated, because it was curable, and you didn't need to treat more than four weeks.
After attending a medical conference, I realized much information about Lyme disease was not reaching the medical community nor the public. Only limited information, that was acceptable, was reaching them, and with the help of researchers, business people, lay people, across the country, established the first organization dedicated to Lyme disease. Our mission was to provide an area where scientific information could be discussed, all areas, all avenues, not just one or status quo, but what exactly is there out there known that we can get to the truth with. I gave up my career, spent 70 hours a week for the last five years to volunteer at this organization. The sacrifices were great, as many people in this audience know. We used up our life savings in the process, we had no money left, our parents provided us with food, clothing. Santa Claus didn't come unless my mom and dad bought the presents. We were in a race against time.
Within two years we had reached 210 million people across the country, and Lyme disease had become a household word. Not because of two to three of us, or because of the Lyme Disease Foundation, but indeed because of the public. Much of this effort was due to this massive grass-roots education, and indeed I must say Senator Lieberman helped greatly, as did other senators and congressmen, who then decided to set up Lyme awareness week.
In 1990, NIH's new test that they had developed, which is not available to the public yet, photographed the bacteria in my son despite his repeated treatment, and not only him, but other people across the country, showing that short-term treatment, for a few people, may not ever work, and may not work at all. I was dismayed. When I showed this to the pediatricians, they said if we retreated our son, based on what they got from our local health department and our local people in the state, they would cancel us, and they canceled my son as a patient. We had no physician in the state, and we took our son to New Jersey.
Once he was retreated, all his speech came back again, and for the third time he learned how to speak. Muscle tone came back, vision came back, indeed they were able to show his intelligence was very high. He was mainstreamed into kindergarten. He developed girlfriends, went to birthday parties, and we finally found a little boy inside the diseased body. We waited over one year for NIH's tests to be released. We were hoping we could use it to check on our son's progress so that he wouldn't have a relapse and die.
As my son started to relapse, I waited, and waited, and I waited too long. Our son's last relapse came on, and he started having seizures and brain infection. Within 24 hours he was dead. His brain had swelled up so much it had killed itself.
There was no tissue bank in the country to send his autopsy stuff to, so before I went down to see him and make arrangements, I picked up the phone and I called around the country and found some places that they could take the tissue and study it. One of those places was, indeed, where we couldn't find the test, at Rocky Mountain Lab at NIH. And indeed, please remember that name, because those people are wonderful, and they need your funding, more than any other area.
They took his tissue, as well as some other places in the country, and were able to document that when he died he was still infected with Lyme disease bacteria. And at some point, his report, combined with other deaths due to Lyme, combined with other children with trans-placental information, may indeed, at some time in the future, have enough peer-reviewed publications that the CDC may indeed accept trans-placental transmission or death due to Lyme, in which case public health policy can be improved.
Insurance limits for us were used up at two million dollars. The final cost to society for our son was that amount, we all paid the price, through insurance premiums, government policy places and the like. If public policy was prevention-oriented, instead of antibiotic-hysterical, trying to prevent people from getting treated, my son would have been treated much sooner, and I would have been treated, and so would the people here have been treated. We're a society that waits for a disease to happen, and hopes like hell we can catch up, and that's not the type of society we want for the future.
Our public policy must dictate strong prevention programs. Thousands of us have worked towards finding the truth about this disease, we are hoping that the government will move forward past its status-quo seeking behavior. We are not asking what the country can do for us, we are asking what the country can do with us, and what you will stop preventing us from trying to do with you. We have worked for over five years, us and people in the audience, all together, most of the time, and find it's now time for a change, and we are asking for your leadership. I hope that by the time the baby I am carrying is born, there will be some effective coordinated program in the government, that can help prevent any other children or adults from getting this disease. Remember, all of your own states have the right tick now, and all of your own constituents can get this, and your grandchildren, and your uncles, and aunts, and nieces, could get this disease.
I'd like to close by saying one thing that will let you know that we have received a grant, as of two years ago, from the CDC, for public education, and wound up producing a bi-lingual educational video that went out to 9,000 schools, and as of this spring, over 3.5 million children have directly seen this video on Lyme disease and remember about it. Because of the partnership between ourselves and the CDC.
I thank you for the chance to talk and I hope that you will take this into consideration.