Florida Lyme Disease in Children
Our Daughter's Pain
By Angela and Lou Bachmann
Our family's story really began the day our daughter, Lori, was in her senior year of high school. Lori was not feeling well, and her father was called to pick her up during exams. What he saw when he arrived frightened him terribly. Lori had lost control of her legs, was very weak and could barely walk. Together, they struggled to get out of the school and into the car ... but found it nearly impossible.
The nightmare had begun for all of us.
What we didn't know then was that Lori had already been sick for quite a few years. As a grammar school student, she had been a very energetic child who loved athletics and was a star basketball player! However, just after entering high school, her entire personality seemed to change. She began to constantly visit doctors for various ailments that were always misdiagnosed as upper respiratory infection. Some of her symptoms included sinus problems, ear problems, headaches, neckaches, sore throats, strep throats, swollen gland, mono, pains in her knees, nervousness, shaking, anxiety attacks, seizures, blacking out, extreme tiredness and fatigue, sleeping too much, insomnia, nausea, stomach and chest pains, chills, a low body temperature and a loss of interest in hobbies she had previously enjoyed ...
There are many things I'm leaving out. Just trying to write this is upsetting me. The memories that we all try to put in the past are now right here with me as I tell my daughter's story ... and ours.
Each time Lori saw a doctor she was put on medication, usually an antibiotic. These medicines eased her symptoms and made her "feel better" for awhile ... at least for a few weeks. As the years went by the doctors, frustrated by their own incompetence, began to infer that: l) It was in her head! 2) She was a woman, and couldn't handle stress! 3) She was acting! 4) Her very low blood pressure was making her pass out! These are just a few of the many ridiculous comments that were made to a very sick person.
On a number of occasions, I remember her crying and pleading with them to just believe her and to help in some way. She would tell them that she couldn't stand it anymore, but none of the doctors seemed to take her seriously. This continued for many years, until her medical folder filled with all her illnesses and different medications was at least two inches thick.
Then, one day while revisiting one of her doctors, this all came to an abrupt end or, should I say ...
IT ALL BEGAN.
Two years ago Lori, now a twenty-five-year-old woman, was sent for immediate testing. We didn't know what was going on and were very frightened. Our doctor finally had realized that something very serious was going on. The blood tests were sent to infectious disease doctor, Leon Smith, and after further testing he finally made the correct diagnosis. All these years... all these terrible, suffering years, Lori has had Lyme disease!
In looking over her records, our current doctors, Drulle and Eiras, have concluded that she must have gotten the disease at about thirteen years old, and it was never detected. It has, by now, entered her brain and every other part of her body.
Our family has seen many doctors for the disease. The doctor she immediately started to see knew very, very little about Lyme disease. We looked for specialists in the field, but found the majority of physicians didn't have an adequate Lyme disease background. One man I talked to was very proud to tell me that in medical school, he had taken a "course" in Lyme! Well, wasn't that wonderful? A course!! Today I ask doctors what they know of Lyme, and many of them confess that they know very little.
We went to pain doctors, neurologists, psychologists, sought alternative ideas. We tried everything. Her original doctor gave her a certain intravenous medication for three months, which cost Lori her gallbladder.
It was about at this time that I began to communicate on an Internet medical bulletin board with a man named John. That's how he used to refer to himself. I wrote constantly of our problems, and one day John sent me a letter and included his telephone number. He stated that we should call because he felt sure he'd be able to help.
When my husband, Lou, called the number, the woman at the other end answered the phone, "Doctor's office". We finally found out that this man, this wonderful man who I had been communicating with, was a doctor. His name is John Drulle, and he and his wife, Emelia Efras, practice in Jackson, New Jersey.
My husband made an appointment on the phone immediately, and soon after that we took our first of many trips to see our new doctor. He spent a couple of hours with us, which is something that is unheard of in the medical profession today. Drs. Drulle and Eiras have treated thousands of cases of Lyme disease, and are truly two of the most competent doctors we've ever met.
Dr. Drulle asked Lori to give him at least a year to get her better. She was so very ill when we first met them. She married in March, 1996, but couldn't carry a traditional flower bouquet. She was upset that her picline intravenous would show, so for pictures she ordered fresh flowers that she carried over her arm. We had a wonderful time at the wedding, but I was told that the next day, as they drove to the Pocono Mountains inPennsylvania, her mouth was pulling down and getting rigid. Russell and Lori had originally planned to go to Jamaica, but she was uncomfortable to leave the security of being close to her doctor.
When they came home, such terrible things began to happen. Looking back, it wasn't long ago at all.... but it seems like a lifetime since the happy day that they were married. We were constantly on the phone with the doctors. We had their number for emergencies, and I thank God for this, because a year and a half ago Lori experienced a long, terrible time of constant seizures.
The doctors tried many different medications, mood elevators, etc. Severe headaches were a normal part of life at this point, and she began to have injections right into her head at different trigger points. These injections would immediately relieve the pain for awhile, which was a blessing. Although Lori was beginning to feel a little better, she still didn't feel strong enough to return to the original teaching position she had left by January, 1996. Lori was afraid to stay alone because of weakness and seizures, so Russell would drop her off at our house early in the morning.
In the midst of all this, we had the usual insurance problems "We won't pay except for the initial twenty-eight day treatment, because we all know that Lyme will be cured during that time!" Don't we all wish!!
Too bad the insurance companies couldn't be with us when my husband and I went to Washington to attend a Lyme Disease Rally. Many victims of Lyme, including Lori, weren't well enough to go, but we wanted to get an idea of what was going on. Oh, how sad it was! People held up signs reading, "I've lost my health, I've lost my job, I've lost my home, and I've lost my family". More than once, we saw signs that included all the words. Yes, insurance companies ... you helped them to lose their houses and families. These are poor, sick people, many of them in wheelchairs, all of them very pale and tired looking. But, you say, "They're well!"
Today, Lori still suffers from extreme fatigue and has pains and aches. She takes vitamins and eats the correct diet indicated for Lyme disease a no sugar/no carbohydrate diet. We also found out that many of her symptoms were worsened by hypoglycemia. So this diet, specifically the Atkins Diet, seems to be working out well. She was able to return to her teaching position this year, after almost a two-year absence. She may always be on medications, because it's the only treatment that will help her.
We beg God to look down on Lori and Russell and help when she is weakest. As parents, we pray that her life will be blessed with less pain, and that the two of them will be able to experience the happiness that a young married couple should. We hope you will also say a prayer for our daughter. Thank you.
[After this article was written, Dr. Drulle died of complications due to Lyme disease. He is missed].