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KVF Kennedy Hearing Testimony 1993

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Mr. Chairman [Sen. Ted Kennedy] As I have mentioned, the disease is of particular concern to me because it affects Connecticut as a whole; however, I think it is also important that we recognize and hear from individuals who suffer from the disease, and the witness you are about to hear from, Karen Forschner, of Tolland, understands this disease in a very poignant way because of what has happened to her own family; her son lost his life and she herself has suffered. Karen has been a leader on the issue, and I think you'll be moved by what she has to say.
Mr. Chairman, there are obviously many aspects of the disease that are unknown and troublesome. First, there are few answers to the health problems of people who continue to suffer from the disease even after therapy. And there is no effective test to diagnose Lyme disease.
At a time when we must worry about the safety of our children on the streets and even in the schoolyard, it is disturbing that we must also be concerned that playing in the back yard may pose a serious hazard to our children. But we must be concerned because the absence of an effective test means that some parents won't know whether their children have Lyme disease until they get sick. If we had a vaccine against Lyme disease, we would have one less worry about their health and safety.
I agree with Senator Bradley. I think this hearing is extremely important. I commend you for holding it, and my colleagues here for attending this morning.

KVF Kennedy Hearing Testimony 1993 - Page 41 to Page 47

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And I am very pleased and honored, Karen, that you are here. Again, we all apologize for what happened last week, unavoidably, but we are deeply grateful to you for being here today.
Thank you, Mr. Chairman.
The Chairman. Thank you very much.
Karen.
Ms. Forschner. You mentioned that I chair the board of directors of the Lyme Disease Foundation, but after all my years of a career, I find that my most important role that I have ever had was as Jamie's mom, and that's the role I will speak about today.
The other thing I'd like you to remember is that the people who are here on the panel are not the people speaking because of woe is us, and an example for fundraising to get more money from the Government. We are an example of what has happened when the Government system let us fall through the cracks. And the heroes of this disease are within the Government, within Congress. But also the main heroes of this disease are the public, the people who are sitting behind me and the people across the country who have taken the message and the advocacy to everybody they can, and as I think you know, from some of your faxes and letters, they have also taken the cause to you. And we thank you for having this meeting today.
The cancellation last week indeed was a very honorable thing for you to do, Senator Kennedy, because it gave everybody a chance to nave input into the process, and I thought it was very nice.
I will talk as fast as I can, because I know you are
The Chairman. No, no. Take your time. We have the time.
Ms. Forschner. I am glad, because I'm 5 months pregnant, and I'm a little bit breathless right now.
The Chairman. That's alright. Take your time.
Ms. 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. Soon after Jamie's birth, his symptoms start- ed. 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 ar- thritis and a permanent condition, and that he expected me to re- main on crutches until I required a wheelchair.
However, there was this mystery illness called Lyme disease, and the doctor offered me 2 weeks of antibiotics, just in case. If my symptoms went away, and I was cured, I had Lyme disease; if my symptoms remained, I did not, 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, and was always 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.

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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 how it affected 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-sen- sitive, which 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, mal- nourished 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 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 innovation to the muscles; this caused him to lose muscle tone, and he became "floppy." This meant that he could not sit, crawl, or hold his head up, and he certainly could not feed himself.
The devastating set of involvements that are known to be Lyme disease involvements made Jamie 100 percent dependent—for life. Tests, probes, biopsies, all could not pinpoint the problem. When Jamie was 1-1/2, he had surgery to realign his stomach in an attempt to stop the life-threatening vomiting. The surgery did not work, and our son had a permanent hole cut in his stomach so that he could feed through a feed tube. Indeed, we really only needed antibiotics.
Tom's company, a CPA firm, declared that Tom no longer had that "zip" that they expected of their potential partners, and proceeded to let Tom 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 2nd birthday, we found ourselves un- able to provide the medical care needed, and we were told to institutionalize him or put him up for adoption, as there are families who are set up to handle multiple-handicap children.
I turned into our son's advocate, no longer listened to what the doctors said, and started searching the medical literature. And I realized Jamie had Lyme disease, I had Lyme disease, our pets had Lyme disease and transplacental transmission had already been published. We fell through somebody's cracks.

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Then a doctor saw permanent damage in our son's eyes, damage caused by 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 14-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 there is a lot of pressure, and the only time we had to worry was 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 lit- tle TV blurb and soundbite. Indeed, I think that what we saw was a child who was courageous and might indeed help other people learn a little bit about this disease—and maybe, God forbid, yes, maybe he might be able to get some funding for 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, over time, 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 documented improvements, over the years, local doctors and health officials would interfere repeatedly with our son's retreatment. Indeed, it was an obsession to make sure that our little boy did not get treated because it was curable, and you didn't need to treat [with] more than 4 weeks [of antibiotics].
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, we established the first [nonprofit] 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 the status quo, but what exactly is out there, known, that we can get to the truth with.
I gave up my career and spent 70 hours a week for the last 5 years to volunteer at this organization. The sacrifices were great, as many people in the audience know. We used up our life savings in the process. We had no money left. Our parents provided us with food and clothing; Santa Claus didn't come unless my mom and dad bought the presents. We were in a race against time. Within 2 years, we had reached 210 million people across the country, and Lyme disease had become a household word - not because of two or three of us, or because the Lyme Disease Foundation, but indeed because of the public [spreading our words].

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Much of this effort was due to this massive grassroots education. And indeed, I must say Senator Lieberman helped greatly, as did other Senators and Congressmen. [Senator Lieberman and I] 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, so 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 1 year for NIH's test to be released. We were hoping we could use it to check on our son's progress so that he would not 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 infections. 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 remains to, so before I went down to see him and make arrangements, I picked up the phone and called around the country and found some places that could take the tissue and study it. One of those places was indeed the same place 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 disease, combined with other children with transplacental information, may indeed at some time in the future have enough peer review publications that the CDC may indeed accept transplacental transmission or death due to Lyme, in which case public health policy can be improved.
Insurance limits for us were used up at $2 million. The final total cost to society for our son was that amount. We all paid the price through insurance premiums, Government, policy, and the like.
If public policy were 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. A society that waits for disease to happen and hopes like hell we can eaten up is not the type of society we want for the future. Our public policy must dictate strong prevention programs.

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Thousands of us have worked toward 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 5 years, we and people in the audience, all together, most of the time, and find it is now time for a change. 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 pro- gram in the Government that can help prevent any other children or adults from getting this disease.
Remember, all of your States have the tick now, and all of your constituents can get this, and your grandchildren, and your uncles and aunts and nieces could get this disease.
I would like to close by saying one thing, to let you know that we received a grant as of 2 years ago from the CDC for public edu- cation, and wound up producing a bilingual educational video that went out to 9,000 schools. As of this spring, over 3.5 million chil- dren have directly seen this video on Lyme disease and remember
am pointing to
I
Duane Gubler—and the CDC.
I thank you for this chance to talk, and I hope that you will take this into consideration. Thank you.

[The prepared statement of Ms. Forschner follows:]
Prepared Statement of Karen Vanderhoof-Forschner, BS, MBA, CPCU, CLU
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 seri- ously ill with multiple problems including serious joint swelling & 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 2 weeks of anti- biotics—just in case. If my symptoms went away, had Lyme. My symptoms tempo- rarily improved and once off treatment the symptoms came back—in full force.
At the same time all 5 of our beloved pets, 3 cats &. 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, pos- sible 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. I was guaranteed he couldn't. Our son was never exposed to ticks and never had a tickbite.
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 & forth, turn inward
& outward, and become light sensitive. This caused him to have double vision, mo- tion sickness, inability to open his eyes outdoors, and blindness.
—Jamie's facial & tongue muscles, causing his face to be partially & sometimes fully paralyzed & droop resulting in drooling, loss of speech, loss of the ability to eat or swallow, and allowed food or saliva to go directly to his lungs. Children & adults started staring at him, loss of speech frightened him, feeding nim 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, because of the partnership between ourselves

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Jamie's hearing, causing his hearing test to show he was totally deaf. Then Jamie started talking. The Iyme Disease nerve involvement had affected the test. Unfortunately, we were unable to tell how It affected Jamie's hearing.
—Jamie's stomach, causing repeated vomiting and since he was too weak to lift his head and we had to worry about his drowning during times he was laying down. —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, all could not pinpoint the problem. When Jamie was IV2
he had surgery to realign his stomach in an attempt to stop his life threatening vomiting. The surgery dBdnt work and our son had a permanent hole cut Into his stomach so 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 sons advocate and spent several months researching the medical literature. I re- alized Jamie had Lyme Disease contracted through placental transmission. Trans- mission of infection during pregnancy and adverse outcome had been already docu- mented in medical literature. —damage caused by of
Then, a doctor saw permanent damage in our son's eyes
a congenital spirochetal infection. Indeed, we discovered Lyme Disease was caused by a spirochetal bacterium. Then, I found a test for Lyme Disease resulting in Jamie and I testing positive! All of my sons symptoms were explained by the medical lit- erature 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 treat- ed 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 multihandicapped". Howl learned to hate that word. When Jamie's relapses were in process even nis throat would collapse and he spent time on life support. Media peo- ple 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 par- ents worst nightmare". Those words will always haunt me. And, then the nightmare started.
Indeed, over time he was on life support many times. When Jamie received treat- ment 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 & documented improvements, over the years local doctors and health officials would interfere repeatedly with our son's retreatment—as Lyme was easily curable. Despite the proved cause & effect of treatment, evaluated by many independent professionals, the label of "Lyme Dis- ease" caused a paranoia behavior to withhold life-saving treatment. When we asked the pediatrician for Amoxicillin to give to our son over a 3 month period to prevent a relapse we were told that Amoxicillin was dangerous and there was no proof the Lyme bacteria can survive the short-term intravenous medicine he had while on life support. Two weeks later we were back to the pediatrician for a potential ear Infec- tion. The same pediatrician prescribed the now "safe" antibiotic Amoxicillin to pre- vent an ear infection that had not yet started. And, the prescription was issued in the same dose we had requested for a total of 4 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, & laypeople established the first organization dedi- cated to Lyme Disease—the Lyme Disease Foundation. Our mission was to provide an area where all of the scientific information could be discussed, not iust the U.S. version of "status quo". Igave up my career and spent 70 hours a week for the last 5 years as a volunteer. The sacrifices were great. We used up our life's savings 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 2 years we had reached 210 million people and Lyme Disease became a household word. Yet, there were no an- swers for our son.
Doctors started fighting about whether or not my son should be retreated—even doctors not involved In my sons care! Yet, there was proof that Jamie's persistent infection continued to ravage his body. 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 even an academic who recommend no retreatment.

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In 1990, NETs new test photographed the bacteria still In my son, despite re- peated treatment, I was dismayed. When showed this to his pediatricians the doc- tors canceled my handicapped son as a patient since I planned to have him re- treated because he was heading into another serious relapse. Once Jamie was re- treated he gained back speech, muscle tone, vision, eating and many other little boy skills. He was finally mainstreamed, after 2 years of "advocating", into kinder- garten. 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 we finally found the little boy inside the diseased body.
We waited over 1 year for the NIH test to be released and available to check our son's progress. As my son started to relapse again, I waited for the NIH test, it was always close to being run. It never came and we waited too long.
Our son's last relapse came on and he started having seizures from the brain in- flammation. 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 autopsy remains to, so I had the unpleasant task of call- ing researchers around the country and dividing up my sons body to sent to dif- ferent researchers. I loved this little boy and would have died for him and, here 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 prove it in order to help other children.
Insurance limits were used up, Jamie's medical bills totaled about 2 million dol- lars. The final total cost to society for our son was around 21/2 million dollars. The majority of the cost was in disability care and excessive nonLyme Disease testing. A minor amount was in treatment with antibiotics.
And, yes, the autopsy proved Lyme Disease bacteria were still in his brain. Our lifetime of 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. Unfor- tunately, some parts of the government have an obsession with keeping the status quo. The true hero's of Lyme Disease have been a wide mixture of public, support groups, researchers, some 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 public's needs. I think this disease may not be easy to diagnose, easy to treat, nor easy to cure. And, sometimes permanent damage may occur. There may even be deaths due to Lyme Disease. We have tried the old ways for over 5 years, it Is now time for a change!
The Chairman. Ms. Forschner, we thank you, not just for your words, but for your real life commitment and what you have been doing and what you continue to do. It is an extraordinary example of a mother's love for a child, going to the extent that you did under the most extraordinarily difficult and trying circumstances. You have demonstrated that and clearly extended it not just to your own child, but to others, and that's really the ultimate act of both faith and love, and I think you are a real inspiration, as are the others who have testified here, for us here today.
You mentioned the family leave legislation, and we have our good friend Senator Dodd to thank for that. This is the first day of its implementation, and I think you gave us a very good example of why that legislation is important, as just a sidelight on this.
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