A Family's Experience Trying to be Heard.
They Believe Many Physicians Cannot Hear "Lyme."
Our story begins 15 years ago with a move to a wooded country home in Mississippi. It was mid-summer and beautiful. We were enthralled with all the animals and privacy and natural beauty. We knew there were snakes in the woods and probably some slightly dangerous wild animals. What never occurred to us was that there was something much smaller that could completely change a life.
A month after we moved, our second child, Abi, developed appendicitis and 2 weeks later developed the strangest symptoms we had even seen especially in a 10-year-old. She had chest pains and a strange vertigo and dizziness. We thought she might die and rushed her to the hospital. At first, they were concerned but, gradually, the doctors became less concerned even with some slight abnormalities on blood tests like an elevated sed rate and elevated liver enzymes. And comments were made like, "Don't let her get too attached to her bed." We were shocked. How could we let her get attached to the bed? We had always had more trouble getting this particular child to sit still for a minute or two. We took her home and watched her struggle with pain and an amazingly bad headache. And we started going from doctor to doctor trying to figure out what was wrong before she died. We thought it was that serious. She had always been thin and wiry but now she couldn't eat and was losing more weight. An endoscopy revealed gastritis. Nothing could persuade her to watch TV or read or much of anything. The utter transformation of a healthy, vibrant child to a complete invalid overnight was unbelievable. One doctor was really angry with me because I really did not see how this illness could be migraines, which is what he was diagnosing even though it didn't cover all the symptoms. And one GI doctor was furious. I guess he thought we had come to the ER one too many times. Our 70 lb. 10 year-old was running a 101.4 fever and acting very sick. The doctor declared that she was a major psychotic and we, her parents, wanted her to have a brain tumor. He didn't believe she had a fever even when I said that the ER nurse had taken it. He was going to go check. So, I pulled the paperwork out of my purse. It was in centigrade; and so, he circled it and told us, "Well, kids get temperatures all the time. You can have a virus every week." Then as part of his examination, he took this small child who was dizzy and had a bad headache by the shoulders and shook her. This was his test to see if the pain was real. We felt violated. We didn't know what to do or where to turn. But, we knew we couldn't go to the ER again no matter how frightened we were. The pediatrician wanted us to see a psychiatrist, not a psychologist, but a psychiatrist. It was not easy to find one in our area who saw children. And we really did not think this was going to be helpful anyway. We KNEW this was a physical problem. The last thing we were told before leaving the hospital was, "This will either get better, get worse, or stay the same." That was not at all comforting to me, and all I could think was, "It took 4 years of medical school to come up with that?"
A neighbor brought me an article about Lyme disease and I started down a long journey with something that was completely foreign to me. We had been bitten by ticks and really thought nothing of it. The symptoms were varied and confusing. Why not consider a Lyme diagnosis? I called the pediatrician and he agreed to do a Lyme test more to humor me than anything because we had not been to the northeast. It was negative and that was supposed to be conclusive. But, the more I read, the more I became convinced that the tests were not definitive and that we had to pursue this possibility. We found a doctor who used another test and found that our daughter had an equivocal response, which was enough for this doctor to treat. What we found was significant is that putting her on the antibiotic brought about a rapid and complete change. We had our Abi back. It was a miracle.
We felt like things were gradually getting back to normal after the 2-month ordeal when our oldest daughter, Angela, who was 12, began having "viruses" but the viruses caused severe joint pain particularly in her knees. This athletic child suddenly had to give up all her sports and outdoor activities. We were watching in disbelief. Lyme disease is rare. This couldn't be Lyme, not again. And it wasn't the same presentation at all. She had lots of arthritis symptoms, which our other daughter had not had at all. No way could this happen again. So, we tried the pediatrician. We got no answers except for maybe growing pains. She seemed to grow weaker and more debilitated by the day. She had a headache and nausea. We saw a family physician and a rheumatologist. No one found anything though the rheumatologist noticed her terribly flushed cheeks and tested for lupus. Everyone looked at us strangely when we mentioned our other daughter's Lyme diagnosis. Finally, as she became unable to walk unassisted and unable to lift a heavy glass, we started to think, "No matter how bizarre this seems, this sounds like Lyme." So, we all went to the next appt. with our 10 year-old daughter and asked the doctor to test us all. He was very gracious and kind to us even though that was a huge inconvenience for him and his staff.
The rest of the family was having strange symptoms though nothing as severe as Angela. The tests came back negative but the doctor agreed to a trial of antibiotics for our Angela. Almost immediately, she became much worse. She couldn't walk to the bathroom and the pain was terrifying to watch. She had hot chills and strange sensations, dizziness and nausea. The headache was severe. And she just seemed to grow worse and worse. The doctor agreed to put her on IV amoxicillin and still she didn't improve. In the midst of all this, I developed iritis, inflammation of the iris. I was so concerned with caring for my daughter that I didn't go to the doctor right away. By the time I did, my pupils were fixed from all the scar tissue and the doctor did not know if I would get my vision back. I was convinced that this somehow connected with my own symptoms of nausea, low-grade fevers, changes in taste, and malaise. So with this diagnosis, the doctor put me on an antibiotic also. My husband wasn't feeling well either and he was watching our family topple. He got some antibiotics too. We felt like we were just barely hanging on. The only one not on antibiotics was our 5-year-old daughter, Ashley. She had some odd aches and pains but, for the most part seemed OK.
Angela's sed rate began to increase and she was put on Claforan. After 2 weeks, she went into what can only be called a nightmare. Everything was worse; she had jerking motions, hallucinations, and severe pain. Every time we would think that this couldn't get any worse, it did. Thankfully, she did improve after a few weeks. She was still incredibly ill and unable to walk. But, she was better. We felt like we could see a bit of flickering candlelight at the end of the tunnel. Her 13th birthday was bittersweet. She was so different from her last birthday party, which was held at a park after a morning softball game. But, she was able to sit up (who could have ever dreamed that we would be counting sitting up a blessing). We sang happy birthday very softly. And then, we added in another oral medication, which caused our hearts to sing with hope again. Our daughter started improving by leaps and bounds. It was too slow for us but the improvement was there. And gradually, we started living a somewhat normal life. She wasn't strong and couldn't go back to the athletic activities. But, the difference between lying in bed in a dark room and going outside and having normal outings was extreme. She continued along, not quite well but ever so much better, for almost a year and a half. Then we reduced her medication, which sent her into a rapid decline. Reinstating the antibiotic did not bring about improvement and finally she was back on IV's which did bring about remission.
As the years went by, this scenario repeated itself again and again. Stopping an antibiotic would cause a relapse. With each relapse, it became more difficult to bring about a remission and it would normally take a different IV antibiotic or combination. Finally after 7 years of the illness and during her second semester of college (she had gotten a full academic scholarship based on her ACT which was taken normally without any accommodations), she went into the last relapse and nothing has been able to bring her out of it. She developed pancreatitis in 1999 and was sent to Mass General to a top pancreatic surgeon. But, no one could figure out why she had pancreatitis and why her pancreas had atrophied. During this time, we found that doctors do not like patients in my daughter's condition and do not want to be bothered with them. The neurologist asked us, "So, does she just LIKE lying in bed all the time?" And one surgeon who refused to do surgery said, "Well, let me put it this way, if you have a car with 4 flat tires and you fix one of them, the car still won't go." I immediately replied, "This is NOT a car. This is a human being and if you have 4 limbs that are hurting and you fix one of them, it IS better." Another surgeon told us that he would have to see if she was a vegetable because he wouldn't waste his time on a vegetable.
Thankfully, the pancreatitis did stop though her pancreas is badly damaged and atrophied but then seizures began. Sometimes, she would have 20 a day. We tried anti-seizure drugs and combinations of drugs. And even though one combination finally improved the seizures, they did not stop. Severe bladder problems began with one infection after another. We would use one antibiotic and seemingly clear up the infection. Then another one would hit with accompanying pain and symptoms. Finally, she was put on an antibiotic that cleared up most of the bladder symptoms and amazingly stopped the seizures. She has been seizure-free for about 2 years. But, around this same time, we discovered that she had central vestibular nystagmus, which severely limits her vision. She can only see about a foot from her face. The nystamus causes her eyes to move in tiny tight little circles constantly. She can only focus on things near her face. This symptom caused us to have yet another MRI which showed atrophy of the frontal lobe and brainstem, brain damage. She is completely debilitated, unable to walk, sit up, or participate in any normal activities even within our home. She lives totally inside her bedroom, really in her bed. She brushes her teeth in the bed, eats in the bed, bathes in the bed, and we wash her hair in the bed. The room is kept completely dark because of intense light sensitivity and also we have done everything we can to eliminate noise because of her extreme noise sensitivity. She is in constant pain. Her head hurts constantly like a migraine that never goes away. She is nauseated and has trouble eating. Her muscles, joints, and skin hurt. She lacks concentration and cannot read except for short articles. Despite all of this, she is conversant and cognizant. We were able to fix a laptop computer with 3 layers of dark film and now she is able to email, surf the web, and shop on eBay. We have tried many different treatments and though she did respond dramatically to antibiotics the first 7 years of the illness, we have not been able to bring about the same response in the last 8 years. However, stopping antibiotics causes her to decline and usually fairly rapidly. We know that the antibiotics are doing something more from stopping them than from improvement when we start them.
The rest of the family was doing pretty well until the last year when our youngest daughter, Ashley (20), went into the hospital with a life-threatening situation. She had an undetectable blood pressure, severe anemia almost requiring a blood transfusion, elevated white count, bleeding from the kidneys, and fever. We were told she might lose her kidneys and this was terrifying particularly when we already had one totally handicapped child to care for. Almost immediately, given our history, we began to wonder if the Lyme had done something to another child. We decided to pursue this even while consulting with a nephrologist and doing innumerable tests for other things. She was tested for hemolytic anemias, Parvo, celiac disease, and other things. Nothing really explained the severe anemia. Lyme testing revealed a positive ELISA and elevated circulating immune complexes. But, what was most amazing is that after at least 8 months of extremely low ferritin levels after instigating antibiotic therapy, the ferritin rate went up to normal levels. And just as importantly, her energy levels, sleep, and overall health have improved dramatically.
Our middle daughter, Abi, has married and is pursuing a career as a lawyer. Despite the severity of her symptoms at the beginning the Lyme infection, she is now quite healthy and is living a normal life.
We continue to pray for better testing and better treatments for this devastating disease.