I have a story to tell ...
For a long time, nobody knew what was
playing havoc with Cheryl Emery's body and mind.
Then she found out she had Lyme disease
by Cheryl Emery
photo by Russ Pellicot
We've never received a letter quite as long as Cheryl Emery's before, nor one as compelling. Because her experience could befall any of us, we're taking the unusual step of publishing the first-person story of her ordeal in a full if slightly altered format.
Emery, 47, is a 15-year resident of Calvert County. A former systems analyst for Blue Cross and Blue Shield, she is now a licensed daycare provider. She and her husband Mike founded the Beach Buccaneers, a youth group involving over 400 children in North and Chesapeake Beaches.
At the end of May, Emery's life changed. She was diagnosed with Lyme disease.
Now, she relies on her daughters, 13 and 22, to help with the everyday tasks of her daycare center.
"I went from saying I can do just about anything to I can't do anything," says Emery. "Sometimes I stand at the back door and think, 'Do I really want to go out there?' Deer ticks are so small that maybe we'll find them and maybe we won't. The people who think they don't have to worry because they're not outside petting Bambi are missing the boat about this whole disease. Lyme disease is a totally consuming thing not only for the person who has it but for the family as well."
I have a story to tell. I realize it is somewhat lengthy, but I ask you to take the time to read it
Approximately two months ago, I thought I had picked up a little poison ivy on the back of my knee. I treated it with the usual topical ointment. It seemed to get worse for a while, but eventually it appeared to be clearing up, except for what appeared to be an underlying tenderness with sensitivity and redness.
The extreme feeling of fatigue, overall blah feelings, tingling in my hands and 'memory hesitations' that I'd mentioned over the past year to my doctor seemed now to be more pronounced.
Even after what appeared to be a bout with the flu, the skin irritation persisted. Finally went to my doctor. The doctor confirmed my thoughts and diagnosed cellulitis or skin infection with inflammation.
From Multiple Diagnoses
The next morning, the right side of my mouth tingled and I began to have trouble pronouncing some words. As I had not yet filled the antibiotic prescription I had received from my doctor the night before, I thought the skin infection could be causing the partial face paralysis. Within an hour, the paralysis extended over the right side of my face, so I called my doctor's office. It had nothing to do with the skin infection, I was told. But I had better get to the emergency room: I might be having a mini-stroke.
By the time my husband had driven me to the emergency room, the paralysis had eased off the right side of my face but was spreading through the left side. Alerted to a possible mini-stroke, the emergency staff took me in immediately. Instead of a stroke, they diagnosed Bell's Palsy.
My husband asked repeatedly if all my problems had anything to do with the skin infection behind my knee. They were sure it didn't even though Bell's palsy is sometimes associated with Lyme disease. If it were Lyme disease, we were assured, there would be a bull's-eye ring around the site area. There was no such bull's-eye, said the doctor, who reluctantly looked at the site and requested a Lyme disease test along with other blood work.
They put me on Prednisone and told me to see a neurologist, have an MRI brain scan. The recommended neurologist I called the next morning did not participate in my health insurance.
With the help of my sister-in-law, I found another neurologist and, as I'm severely claustrophobic, located a facility that did open MRIs. My primary doctor (and my insurance company) did not approve of open MRIs, so eventually my doctor got me in for a closed scan. Even using sedatives, I was barely able to endure the cranial MRI.
My primary doctor called me from home the next day (the Saturday of Memorial Day weekend) to tell me that the MRI results were abnormal. "It's most likely that you have multiple sclerosis," she said. She would book me an appointment with a neurologist at the close of the holiday weekend.
Tuesday morning I learned that the neurologist would see me as soon as I could get to the office. That doctor didn't think I had MS. The newest diagnosis was Lyme disease.
The neurologist did an immediate spinal tap and took more blood for a more precise Lyme test called the Western Blot. Most of these additional tests would take at least one week to be analyzed.
To Lyme Disease
In actuality, I would not receive these results for another 10 days. By then, the neurologist had already started me on a semi-permanent IV with daily extra strength antibiotic. It's a catheter in my arm that my family and I must assemble and administer at home. A visiting nurse would come out every three days to monitor the dressing, my blood pressure and perform weekly blood work to assure that the antibiotic is doing no harm to my kidneys and liver.
After 10 days of total unrealness, my prayers were answered. From The Home Care Solution, my visiting nurse, Kathy Black, appeared. She was professional in her technical skills and compassionate in her supportive skills. She answered my questions and was truly a life-saver in an overwhelming and scary situation.
She assured me that many of the problems I was experiencing - extreme fatigue, crying, memory lapses, lack of concentration, feeling out of control, inability to read or use a computer, low-grade fever, fear of driving my car, insomnia, depression, brain fog, clumsiness, emotional chaos, lack of appetite, nausea, sound sensitivity, high blood pressure, droopy left eyelid, twitching on both sides of my face and mouth, stuttering - were to be expected from the Prednisone, antibiotic and Lyme disease.
At my request, she gave me the name of an infectious disease specialist. I requested a referral from my primary doctor and called to get an appointment. After my examination and EKG, the specialist said "This is the worst case of Lyme meningitis I have seen in a while." (Meningitis in this context means inflammation of the membranes surrounding the brain and spinal column.)
How did I go from being a one-vitamin-a-day person to this in less than three weeks?
Dread the Deer Tick
That's the tiny little tick that can be no bigger than the period at the end of this sentence. (Anyone have any tiny freckles with legs?) Deer ticks are not the same as the bigger ticks that you see, for example, on your pets. I was not out petting Bambi in the woods.
"You don't have to trek through the deep woods," notes Limerix, makers of the new Lyme vaccine. Backyards, golfing, gardening, pets and outdoor sports can put you at risk for contracting Lyme.
I spend lots of time outside in my yard or at Chesapeake Country ball fields. I did not have a bull's-eye around any bite. Like me, between 40 to 60 percent of infected humans never notice a rash. And, if they do, less than 50 percent have the tell-tale bull's eye ring. The National Center for Disease Control says that only about one-tenth to one-twentieth of those contracting Lyme are actually correctly diagnosed and reported.
Calvert County, where I live, has the fifth highest Lyme reporting in the state. Out of some 80,000 residents, between 60 and 90 cases were reported last year in Calvert, according to Calvert County Health Department.
Anne Arundel County, barely a mile away, reported only 25 cases by midyear, up from 10 midyear cases last year.
Maryland is noted as a high risk Lyme area by the Centers for Disease Control. Yet in Maryland from 1989 to 1998 there were only 3,410 reported cases of Lyme. So far this year, 404 cases, including 204 suspect cases, were reported. Last year, only 153 confirmed cases were reported. The week of June 20-26, 1999, produced 37 cases reported state wide.
Diagnosed and reported are the keywords in all these figures.
Do these sound like it couldn't-happen-to-me numbers? They did to me, too.
To Learn More: Lyme on the Web
Answers about Lyme Disease
Q If these ticks get on deer and people, do they get on other animals, too?
A Deer ticks are the primary carrier for Lyme, but research is being done on the possibility that other ticks, birds, squirrels, pets and other small animals might carry the bacteria (less likely) or transport infected deer ticks (more likely).
Pets can bring ticks into the house.
Deer ticks can be very difficult to detect. Dog ticks are much larger and easier to see than deer ticks. (Deer ticks in their nymph stage are the size of the period at the end of this sentence.) Most people do not feel the deer tick bite. Deer tick season in Chesapeake Country is from May to October.
Q Will just one tick bite give me Lyme disease?
A Statistics say anywhere between five and 100 percent of deer ticks (depending on the area in which you live or travel) are carrying the Lyme bacteria.
Q What should I do if a find a tick?
A 1. Remove the tick from your skin right away. Ticks need to be attached 24 to 48 hours to infect you.
2. Use tweezers to grip the tick as close to the skin as you can and pull it out. Cover your fingers with gloves or a tissue if you don't have tweezers.
3. Clean the bite with alcohol.
4. Save the tick in a closed and labeled jar or plastic bag.
5. Mark your calendar on the date you found the tick. If a rash or other symptoms develop within three to 32 days, call your doctor immediately.
6. If symptoms develop, ask the Maryland Department of Agriculture to identify your tick: 410/841-5870.
Q Who gets Lyme disease?
A The National Centers for Disease Control and Prevention says that the highest reported rates of Lyme are in children two to 15 years old and adults 30 to 55 years old.
Q What does Lyme disease feel like?
A The first symptoms may be a flu-like condition, with fever, chills, headache, stiff-neck, aches and fatigue and sometimes even tooth pain.
Weeks or months after the bite (even a bite you don't remember) you may develop pain in various joints or muscles, neurological problems, heart irregularities, problems with vision or hearing, headaches, low-grade fever or other symptoms.
Lyme symptoms can mimic Alzheimer's disease, arthritis, attention deficit disorder, chronic fatigue syndrome, lupus or multiple sclerosis and be misdiagnosed as one of these illnesses.
Q How will I know if I have Lyme disease?
A The blood test is not consistently reliable. Serological tests may miss up to 60 percent of positive cases of Lyme. So you may test negative even though you actually have the disease. There is also a high percentage of false positive results.
Lyme disease must be identified and treated by a physician knowledgeable about the disease. Often that person is a specialist.
There is no test to determine how long you have had Lyme.
Also, there is no test to determine, after treatment, that the Lyme is gone. You will test positive for the rest of your life.
Q Can Lyme disease be cured?
A It can be treated with antibiotics.
If left untreated, it may lead to more serious illnesses of the heart, joints and nervous system. Pregnant women can miscarry.
There is controversy in the medical community as to whether advanced Lyme is curable. Many people suffer post-treatment relapses of Lyme symptoms for the rest of their lives. The National Institutes of Health is currently doing studies on this syndrome.
Q Can Lyme disease be prevented?
A The currently available Lymerix Lyme vaccine is only available to adults between the ages of 15 and 70 years old. There is currently no vaccine for children.
Vaccination takes three injections over the course of one year. Each shot costs about $80 and often is not covered by insurance.
The rate of protection is about 50 percent after two shots and 78 percent after the third. It is effective for two years, with the likely need or schedule for booster shots not yet determined.
Continued preventive measures must be taken against the other tick-borne diseases.
Q Where can I get vaccinated?
A Calvert County Health Department offers this vaccine at a reduced rate beginning July 12, and every Monday thereafter, on a walk-in basis from 12:30 to 3:30pm Each of these three shots costs $53 payable at the time of the service.
Anne Arundel refers countians to its clinics or private health providers.
| Issue 27 |
Volume VII Number 27
July 8-14, 1999
New Bay Times
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