Child Lost to Lyme Disease
The Forshner Story

Testimony of Karen Forschner presented at the Hearing of the Committee on Labor and Human Resources First Session on examining the adequacy of the current diagnostic measures and research activities in the prevention and treatment of Lyme disease.

In 1985, our only child, Jamie, was born. Unfortunately, I had a bug-bite and the full range of Lyme disease symptoms while I was pregnant, and soon after my James birth, his symptoms started. During the pregnancy and after the birth, I was seriously ill with multiple problems, including serious joint swelling and pain. Shortly after giving birth, a doctor told me my crippling arthritis was a permanent condition, and I would remain on crutches until I required a wheelchair. However, there was this mystery illness called Lyme arthritis, and the doctor offered me two weeks of antibiotics just in case. If my symptoms went away, I had Lyme disease. My symptoms temporarily improved but once off treatment the symptoms came back - in full force.
At the same time all 5 of our beloved pets, 3 cats and 2 show dogs, became seriously ill after multiple tick bites and required repeated hospitalizations. As fate would have it, all of us contracted Lyme disease. Eventually all my pets were lost due to Lyme disease.

Jamie was the light of our life; blond haired, blue eyed and smiling. By the time he was 6 weeks old, his health was in question. He had repeated vomiting and eye tremors. By 6 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 my pregnancy. I was guaranteed he couldn't. Our son was never exposed to ticks, and never had a tick bite.

To understand this disease I would like to explain what it did to our son's brain. The bacteria attacked the part of his brain that controlled Jamie's eye movements, causing his eyes to swing back and forth, turn inward and outward, and become light sensitive. This caused him to have double vision, motion sickness, inability to open his eyes outdoors, and blindness. Jamie's facial and tongue muscles caused his face to be partially or fully paralyzed and droop, resulting in drooling, loss of speech and loss of the ability to eat or swallow. It allowed food or saliva to go directly to his lungs. Children and adults started staring at him; loss of speech frightened him; feeding him by mouth became life threatening as repeated lung infections started. Eventually a partially collapsed lung resulted in multiple hospital stays. Jamie could not tell us he was scared, had a headache, or even that he needed the bathroom. Jamie became mute, malnourished, and frustrated. It affected Jamie's hearing, causing hisearing test to show he was totally deaf. Then Jamie started talking. The Lyme disease nerve involvement had affected the test. It affected Jamie's stomach, causing repeated vomiting. Since he was too weak to lift his head, we had to worry about his drowning during times he was lying down. It affected Jamie's nerve conduction, causing loss of muscle tone. Jamie was "floppy", and couldn't sit, crawl, feed himself or even hold his head up. This devastating set of involvements made Jamie 100 percent dependent - for life.

Tests, probes, biopsies, none could pinpoint the problem. When Jamie was one and a half, he had surgery to realign his stomach in an attempt to stop his life threatening vomiting. The surgery didn't work, and our son had a permanent hole cut into his stomach so that he could have a feeding tube installed to help keep him alive.

Tom's company, a CPA firm, declared Tom (my husband) didn't have that "zip" that potential partners needed, and proceeded to let Tom go. Today, family leave would have given him some time to take care of his devastating family life.

As Jamie approached his second birthday, we found ourselves unable to provide the medical care Jamie needed, and were told to institutionalize him. I turned into my son's advocate, and spent several months researching medical literature. I realized Jamie had Lyme disease contracted through placental transmission. Transmission of infection during pregnancy and adverse outcome had already been documented in medical literature.

Then, a doctor saw permanent damage in our son's eyes - damage caused by a congenital spirochetal infection. Lyme disease is caused by a spirochetal bacterium. Then I found out about a test for Lyme disease resulting in Jamie and I testing positive! All of my son's symptoms were explained by the medical literature on Lyme disease. Life was good. I was told my son would get treated and the disease process would stop. Lyme was easily curable. Not true. Jamie was treated and relapsed several times. The meningitis in his brain had caused his head to enlarge to the size of a 14 year old. Clothes didn't fit unless adapted "for the multi-handicapped". How I learned to hate that word. When Jamie's relapses were in process, even his throat would collapse, and he spent time on life support. Media people were rushing out to see this child. I thought Jamie's story was of courageous struggle, but Dan Rather termed it the way the media saw the story: as "every parents worst nightmare". Those words will alws haunt me. And then the nightmare started.

Over time he was on life support many times. When Jamie received treatment he would recover. His vision returned. His speech started. He started to feed by mouth. His 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 retreatment because Lyme was "easily curable". Despite the proved cause and effect of treatment, evaluated by many independent professionals, the label of "Lyme disease" caused paranoid behavior and the withholding of life-saving treatment. When we asked the pediatrician for a three-month perscription of Amoxicillin to give our son to prevent a relapse, we were told that Amoxicillin was dangerous, and there was no proof the Lyme bacteria could survive the short-term intravenous medicine he had been given while on life support. Two weeks later, we were back to the pediatrician for a potential ear infection. Theame pediatrician prescribed the now safe antibiotic Amoxicillin to prevent an ear infection that had not yet started. And, the prescription was issued in the same dose we had requested for a total of four months!

 After attending a medical conference, I realized much information about Lyme disease was not reaching the medical community nor the public. And, with the help of many researchers, business, and lay people I established the first organization dedicated to Lyme disease - the Lyme Disease Foundation. Our mission was to provide an area where all of the scientific information could be discussed, not just the US version of "status quo". I gave up my career, and have spent 70 hours a week for the last 5 years as a volunteer. The sacrifices were great. We used up our life's saving in the process. Family provided us with food, clothing, holiday gifts for our son, and much support. We were in a race against time. Within two years, we had reached 210 million beople, and Lyme disease became a household word. Yet, there were no answers for our son.

Doctors started fighting about whether or not my son should be retreated - even doctors not involved in my son's care! There was proof that Jamie's persistent infection continued to ravage his body, but electron microscope pictures of the Lyme bacterium proving current infection were not enough "proof" for the pediatricians. After all, they had talked to the state health department and an academic who recommended no retreatment.

In 1990, NIH's new test photographed the bacteria still in my son despite repeated treatment, I was dismayed. When I showed this to his pediatricians, the doctors canceled my son as a patient because I planned to have him retreated, since he was heading into another serious relapse. Once Jamie was retreated he gained back speech, muscle tone, vision, eating, and many other little boy skills. He was finally mainstreamed, into kindergarten. You see, once you are ill there are many battles to wage. Jamie developed girlfriends, learned to operate an electric wheelchair, became potty trained and finally found the little boy inside the diseased body.

We waited for over a year for the NIH test to be released in order to check our son's progress. As my son started to relapse again, I waited for the NIH test. It never came, and we waited too long.

Our son's last relapse started, and he began having seizures from the brain inflammation. Within 24 hours he was put on life support. The day he was declared "out of the woods", he died. His brain swelled up so much it killed itself. There was no tissue bank to send his remains to, so I had the unpleasant task of calling researchers around the country, and dividing up my son's body to send to different researchers. I loved this little boy, and would have died for him. Instead I was forced to arrange an autopsy. You see, the CDC has been denying congenital Lyme and death due to Lyme, despite numerous publications to the contrary, and I hoped this would provide proof that would help other children.

Our insurance limits were used up. Jamie's medical bills had totaled more than 2 million dollars. The final cost to society for our son was around 2 1/2 million dollars. The majority of the cost was in disability care, and excessive non-Lyme disease testing. A minor amount was used for treatment with antibiotics.

And, yes, the autopsy proved Lyme disease bacteria was still in his brain. Our lifetime savings were gone. Our pets were gone. Our jobs were gone. Our baby was gone. If public policy was prevention oriented instead of anti-antibiotic hysteria oriented, my son would be alive today. I am not alone. Other mothers have also lost their children.

Thousands of us have worked toward finding the truth about this disease. Unfortunately, some parts of the government have an obsession with keeping the status quo. The true hero's of Lyme disease have been a mixture of public support groups, researchers and academics, front-line physicians, and some members of congress. HHS has proved to be a failure in coping with emerging epidemics, and Lyme disease patients are one more casualty from the current ineffective health care system.

We have not asked what the country can do for us, we have always tried working with the government. We are now demanding the government become responsive to the publics' needs. I think this disease may not be easy to diagnose, easy to treat, nor easy to cure. Sometimes, permanent damage may occur. There may even be deaths due to Lyme. We have tried the old ways. It is now time for change!

Editor's note: If you would like to send a donation to the Lyme Disease Foundation or would like more current information on Lyme disease, please call the Lyme Disease Foundation at this number: 1-203-525-2000.

For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

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