CHRONIC LYME DISEASE
~ Our Daughter's Pain ~
February 28, 1998
Our family's story really began the day our daughter, Lori, was in her senior year of high school not feeling well. Her grandfather 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 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. There were sinus problems, ear problems, headaches, neck aches, sore throats, strep throats, constant swollen glands, 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 disinterest in different things 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 usually was put on an antibiotic medication. Naturally 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 #1 - Her low blood pressure was making her pass out! #2 - She was a woman, and couldn't handle stress! #3 - It was in her head! #4 - (MY FAVORITE) ... She was acting! 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, became at least two inches thick.
Then one day, while re-visiting one of her doctors, this all came to an abrupt end ...... or should I say IT ALL BEGAN!!!!!??
Two years ago, one of our more concerned doctors had finally come to the conclusion that something very serious was wrong with our 25 year old daughter. She was sent for immediate testing ... we didn't know what was going on and were very frightened. Blood tests were sent to an infectious disease doctor 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 have concluded that she must have gotten bitten and infected with Lyme at about 13 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 quite a few doctors for the disease. The doctor she immediately started to see knew very very little about Lyme. We looked for specialists in the field, but found the majority of MD's 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.
WHAT IS WRONG WITH EVERYBODY?????
We went to pain doctors, neurologists, psychologists ... sought alternative ideas. We tried everything. Her original doctor gave her the antibiotic, Rocephin intravenously for three months which cost Lori her gall bladder.
It was about at this time that I began to communicate on the internet with different people concerning Lyme. I wrote constantly of our problems and one day someone sent me a letter that included a 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 on the other end answered the phone with "Doctor's office". We finally found out that this man, this wonderful man that I had been communicating with, was a caring doctor. We checked this doctor out with the Support Groups on LymeNet and they said "you're going to love him". Lori's first visit with the new doctor went well with him spending more than two hours with our family. He asked Lori to give him at least a year to get her better ... she was so very ill when we first met him. He's treated thousands of Lyme cases and is truly one of the most competent doctors we've come across during our long search for help.
Lori and Russell married in March of '96. She couldn't carry a traditional flower bouquet because she didn't want the intravenous line in her arm to show. So, especially for pictures, she ordered fresh flowers which she placed over that arm. We had a wonderful time at the wedding and Lori looked beautiful ... but, I was told the next day as they drove to the nearby Pocono's, 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. Looking back, it wasn't long ago at all ... but it seems like a lifetime since their beautiful wedding day. So much has happened.
A year and a half ago, besides the other Lyme symptoms, Lori began to have constant seizures. We were making many phone calls to the doctor's emergency number. Thank God he had given it to us because we were so afraid and needed to hear his comforting voice. The doctors tried many different medications, mood elevators, etc. Because intense headaches had become a part of our daughter's life, she began to have injections right into the head at different points. Lori was terrified to stay alone because of weakness, seizures and horrible panic attacks 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 28 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 a Lyme Disease Rally. Many of the 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, has pains and aches, headaches, and panic attacks. 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 a modified 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'll remain on the current antibiotic medications because at this time, unfortunately, it's the ONLY treatment available to ease her Chronic Lyme Disease. I hope she can be fully cured of this devastating disease someday.
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 they begin experiencing the happiness that a young couple should.
We hope you'll also say a prayer for our daughter.
UPDATE November 18, 1999
Guess what ... Lori and Russell are going to have a baby!! She's seven months right now and everything is going great. The doctor has her on a small amount of Zithromax and her medication will remain the same as long as she continues to feel well. Her due date is 1/31/2000. She's been pretty much symptom free since May.
We need those prayers more than ever now!!
UPDATE September 26, 2000
Our beautiful HEALTHY grandson, Cade Russell, now almost eight months old ... was born February 3, 2000. Lori had a wonderful pregnancy & delivery and is still essentially symptom free. She's a pre-school teacher but would rather stay home with the baby. Grandma and Grandpa watch him once a week and boy does he wear us out. Hey, we're getting kind of old. Thank you for your prayers! We're all so happy!
UPDATE November 2, 2001
Lori remains essentially symptom free although she does tire easily and occasionally gets Bell's Palsy like facial pulling when she is over stressed. She has arranged her life around her limitations by working only 3 hours per day, watching her diet carefully and getting as much rest as possible (not much rest with a 21 month boy running around). Cade is simply terrific and we love him so much!
UPDATE October 30, 2002
Lori is doing great. Her only symptoms are related to hypoglycemia (a result of Lyme disease). Lori and Russell are going to have another baby!!! Her due date is 5/30/2003 and so far she is doing wonderfully, just a little tired at times. Cade is now 2 years/9 months and is really pushing the "terrible two's" to the limit.
UPDATE August 1, 2005
Well, it's been a while since my last update. Lori is doing outstanding ... very few minor symptoms. She teaches full time now. We have a new granddaughter, Jordan Rose. She was born May 29, 2003 and, at 2+ years, she's beautiful but a real "character". Cade, the first baby, who is now 5+, was diagnosed with Autism, but he's high on the spectrum. He's going to get some special schooling and then with all my heart I believe things will be well for their family.
Thank you ... Angela & Lou Bachmann, (Grandma & Grandpa)