The life of a Lyme Disease patient in her middle twenties has been very
difficult and is becoming more difficult with each passing day. I have been
suffering from Chronic Lyme Disease for most of my life, but only recently
diagnosed with it. I was bitten by a tick in preschool, but I never exhibited
the infamous bull's-eye rash.
My health problems began shortly thereafter. It was like having symptoms of
Chronic Fatigue and Fibromyalgia at the same time. I wanted to participate in
many extracurricular activities, but my health prohibited this and my main
focus became my school work. By focusing my energy in one direction, I managed
to be quite successful with my grades.
I went to many doctors for the diagnosis of these symptoms. The doctors
thought that it might be cancer since the blood counts seemed to indicate an
infection that they could not locate. Soon the doctors began to refer to my
muscle aches and joint aches as growing pains, and to my fatigue as behavior
exhibited by a hypochondriac. These implications were quite damaging to my
self-esteem and quite literally led me to consider myself as a "freak."
Teachers, doctors and family believed that I created these symptoms to get
attention, even though my glands were inexplicably swollen, and the blood
counts indicated an infection.
I grew up in a rural community with a large tick population. I played and
swam outside during all of spring, summer and fall. I could have easily been
bitten by a tick without realizing it. The ticks are very small in size until
they are engorged.
I went through my junior high and high school years with low self-esteem
due to the continued disbelief by others of my condition. I did well in school
with my very supportive parents helping to focus my energy toward schoolwork.
I made an effort to join the basketball team and swim team, but I wasn't able
to keep up with my peers due to my lack of strength. I was in marching band
which was very difficult for me because extra practice after school was so
exhausting.
I felt as if I had mono all of the time with the swollen glands and having
the stomach flu. My stomach problems were attributed to "nerves" by my
doctors.
At age fourteen, I developed a rash on my legs which by today's methods
would have been diagnosed as Lyme Disease. Instead it was diagnosed as a staph
infection, and I was treated with Bactrim for the rash. I developed a severe
allergic reaction to this sulfur-based antibiotic, and missed a great deal of
school. I made it through this difficult period with my parents' support. I
was treated with steroids to combat the allergic reaction. This seemed to make
the mysterious illness go into hiding. I had more energy, which I used to
focus on my science fair project and swim team.
I developed an outstanding science fair project, which won me a full
scholarship to college. When I began college, I became very ill and fatigued
again. In order to focus my energy on schoolwork, I was forced to give up
extracurricular activities of swimming and debate. This was very disappointing
since debate team was one of the activities for which I had received college
scholarships.
I struggled through college while working for the money that I did not
receive in scholarships. My condition became much worse during those years. I
became an actress with the disease by doing everything possible to look
healthy on the outside, while feeling like "hell" on the inside. I graduated
with a BS in Environmental Health Science Engineering
I developed mono during my senior year of college which was the breaking
point of my Lyme Disease. My condition had continued to worsen partly as a
result of the progression of the disease and partly as a result of doctors
that labeled me as depressed and prescribed anti-depressants for my symptoms.
My parents stood by me, and helped me with further investigation of my
illness. They finally convinced a doctor to send me to a Lyme specialist where
I was diagnosed.
I wanted to go to Medical school, but I had had so much trouble with my
illness, I knew that I would be too weak to handle it. So I went to Paramedic
School, where I adjusted my plans to work with Emergency Medicine.
I have had environmental jobs and paramedic jobs, but I have had to leave
the positions due to lack of strength to work them or handle the physical
demands of the fire- fighting requirement.
So I went back to school to get my Master's degree in Secondary/Vocational
Science Education at least to teach Environmental Management and eventually
paramedic classes. I have finished the certification part of the Master's
degree.
Currently, I am working as a part-time Paramedic and teaching Environmental
management at Greene County Career Center. I am working hard to keep these
positions. With Lyme disease, each day is a struggle.
Eventually, I would like to go to Veterinary School to become an Emergency
Vet (I have refocused my Emergency Physician Plans, because my experience with
trying to find treatment for Lyme disease has caused me not to want to work
with human doctors at the moment.).
I wanted to be a doctor when I was growing up, because I wanted to be able
to care for people who were ill and not make them feel worse for being ill. I
wanted to be a scientist and heal my patients. I did not want to give up on
them, because they were not textbook cases.
Now, I am at the point of being fed up with being ill and getting worse. I
wish that I could see an end to the tunnel or at least the light at the end of
it. I feel as if I am being punished for an evil-doing in a past life.
Chronic Lyme is horrible. The "real-world" is not as understanding as the
confines of the Lyme world. I feel like a loser having to always beg bosses
and professors for "privileges."
I live daily with fears of the next day. It is difficult to be
self-supporting with a chronic illness. Daily, I live with the questions of,
"Will I have enough money for bills, treatments, health insurance, college
bills, etc.? Will I have a home? Can I keep a job to do these things while I
am so ill? Will my government protect me? Will my insurance company cover
treatments?" The world is so scary. Every day gets scarier.
Yes, I have friends and family, but I may lose them since it is becoming
impossible to be an actress any longer. I have trouble controlling my moods. I
have such a depression problem from living with this chronic illness that I
feel like I have let down my family who have helped me all along. I would not
be where I am today without their help. I have trouble expressing my
appreciation since I feel so bad all the time.
This leaves me wondering where has the support of my government and the
education system of this country been? Why is the government not promoting
Lyme disease education? Lyme disease is in every state. Why do doctors not get
more education about Lyme?
Here is my plea to the medical world: "Lyme patients are sick and need the
help and the compassion of the medical world to help put this disease in
remission! WE ARE NOT CRAZY!"
Why does the government not promote more research on this subject? If the
current Lyme tests come back false for most patients, but there are other
tests which prove the disease, why do we not use these tests as common
practice? If the statements are true that there are more Lyme cases reported
than HIV cases, why isn't there some focus on LYME disease?
And what are the patient rights that our government speaks of often? I have
not seen any. I see the abuse of HMOs toward Chronic Lyme patients. We need
rights and for our government to protect us! We need our government to stop
what I call the "Legal Organized Crime" of HMOs. Please have the insurance
companies work with our doctors, not against them. So much money is spent on
paperwork that treatment money is lost.
I want to end this article that is already full of questions with one more.
When will my "Hell" stop along with the "Hell" of other sufferers? I am
getting worse daily. My life is nothing but fear and loneliness since no other
person can understand unless they are a sufferer of chronic Lyme. I am
grateful for the help of my family and friends. You may all truly love me, but
truly can not say that you understand my daily "Hell." It is tougher and
tougher to be positive since I can not see that bright sky in my future.
My goals at the moment are not to let the disease beat me. I want to make
my parents proud of me, because I have not done them justice with my life
since I have been too ill to do so. I will continue to fight for life daily by
taking hands full of medicine - still experiencing the exhausting Lyme
symptoms: unexplained fevers, weight gain, severe fatigue, swollen glands,
sore throat, night sweats, upset stomach, nausea, vomiting, constipation,
chest pain, high pulse, low blood pressure, shortness of breath, heart
palpitations, joint stiffness, muscle cramps/pains, back pain, stiff neck,
arthritis in all joints, loss of muscle tone, headache, stabbing sensations,
numb feet and hands, muscle twitching, tremors, difficult concentration during
reading, mood swings, irritability, depression, sleeplessness, early
awakenings, nightmares, obsessive compulsive behavior, blurred vision, bad
night vision, ear pain, ear ringing, motion sickness, dizziness,
lightheadedness, wooziness, urine control problems, frequent urination, loss
of sexual libido (This is a serious problem since I am in need of a mate like
most women in their middle twenties. Not having someone makes me more
self-conscious and gives me more feelings of loneliness.), and lastly the fear
of never being able to have children (My gynecologist says that this will be
difficult at best.) Yes, I look healthy with all these symptoms (maybe rings
under the eyes at most).
When will I be able to stop giving up my dreams for this disease? When can
I be what I want to be?
My prayers and love are with all Chronic Lyme disease sufferers.
Your authors are friends in Lyme; we share rides to PA for treatment, and
this spring attended the DC Lyme rally together. Sometime this spring, Rolf
heard a speech by President Clinton that mentioned people going to Canada and
Mexico to get prescriptions filled. The more we discussed this, the more we
thought that a trip to Windsor, Ontario (across the river from Detroit) would
be worth investigating. On the Internet we found a site "www.yellowpages.ca"
that listed dozens of pharmacies in Windsor. We each called several of these
to get comparative prices. We found out the following:
When Rolf called Hunter Pharmacy and said he was from Ohio, Mr. Hunter
asked if he was with the "Sherrod Brown trip." He asked "What trip?" and Mr.
Hunter replied, "Representative Brown is organizing a group of people to come
up to get prescriptions filled."
Sue called Representative Brown's office for more information and we were
both lucky to be his guests. Not only did we get a ride to Windsor, but we got
the rare opportunity to converse with one of our legislators in person.
All went very well and Sue saved a total of $250 on four prescriptions
while Rolf saved about $125 on a two-month prescription.
One important note. Due to insurance-related issues, some MDs in Canada are
no longer seeing US patients. You should get the name of a cooperative MD from
the pharmacy you plan on visiting and contact the MD in advance.
Representative Brown has been investigating the costs of prescription drugs
for over two years. He has conducted several comparison studies.
One study compared the cost of several drugs at local pharmacies versus the
cost charged to the Veterans Administration or other favored customers. The
results showed that NE Ohio consumer paid twice as much as these groups.
In another study he compared the costs at local pharmacies versus the cost
at pharmacies in Canada. This research was done over the phone and then
confirmed when a group of Ohioans (your authors included) took to the road and
actually purchased prescriptions at Hunter's Pharmacy in Windsor, Ontario. The
results? NE Ohioans pay 64% more, on average, than Canadians for identical
drugs. In some cases the cost in the USA was double the price in Canada.
Finally, Brown did a comparison of drug costs at local pharmacies versus
the costs for the veterinary version of the same drugs. Not surprisingly,
there was a huge price difference, with humans paying 131% more for drugs
which, in most cases, are made in the same factories as the "animal" version.
Mr. Brown pointed out that in many cases as much as 50% of the research
costs of a drug are paid by the federal government in the form of research
grants. He also pointed out that drug companies frequently get riders on
Federal funding bills that serve to extend the patents on profitable drugs.
Congressman Sherrod Brown is involved with legislation to improve this
situation. To date he has: Note that while many of his current proposals are specifically aimed
towards helping senior citizens, the authors felt encouraged by Congressman
Brown's interest in our Lyme disease cases. As you will see below, you have
the opportunity to further bring attention to Lyme Disease as well as to the
cost of prescription drugs by joining him on his next trip.
We are pleased to share with our fellow GCLDSG members news of a second bus
trip to Windsor, sponsored by Congressman Brown. The next trip is planned for
Sept 1, 2000.
For details call Congressman Brown's office - 440-934-5100 (or FAX
440-934-5145) and ask for Sally.
The first trip took three hours each way and included a stop for lunch at a
buffet restaurant with reasonable prices.
"He who has health has hope, and he who has hope has
everything" WASHINGTON (AP) - The bacterium that causes Lyme disease has been
identified as the first disease-causing germ that does not need to take iron
from the blood stream of its host.
Dr. Frank Gherardini of the University of Georgia said that other bacteria
that cause disease have evolved a strategy to scavenge from the blood of
victims the iron that is essential to their survival.
"Although iron is abundant in humans, the amount of free iron is well below
the levels required to support the growth of most bacteria,'' Gherardini said
in a statement.
But Borrelia burgdorferi, which causes Lyme disease, apparently evolved a
biological strategy that does not need iron, thus avoiding the problems that
other bacteria have in getting iron from the blood stream.
``In fact, iron is extremely toxic to it,'' Gherardini said.
A report on the study appears Friday in the journal Science.
Lyme disease is caused by a microbe that is spread to humans through a tick
bite. The disease can cause headache, fever, stiff joints and fatigue. It can
be treated effectively with antibiotics.
In another study of a tick-borne disease, scientists at the University of
Minnesota School of Medicine and the Northwestern University School of
Medicine have found a key step in the infection process of a disease called
Human granulocytic ehrlichiosis, or HGE.
The researchers report in Science that the bacterium that causes HGE
infects neutrophils, which are cells in the immune system. The germ gets into
the cells by making a molecule that mimics a natural molecule called
P-selectin that is normally absorbed into neutrophils.
When the bacterium molecule links to a P-selectin receptor on the cell
surface, the germ is able to enter the cell and start the disease process. HGE
infection often accompanies Lyme disease. Both are carried by ticks. HGE
causes high fever and headache. It is treated with antibiotics.
WHERE IS THE HELP TO END THE HELL?
By Dottie
Hammersley
(Dottie Hammersley, of Kettering, Ohio, a paramedic,
presents an eloquent picture of how Lyme disease can damage the most vibrant
and vital time of life. Her story was included in the packet of Ohio
patient stories presented to Ohio senators and representatives in May. We
thank her for her insight and her courage in sharing her experience)
Part I - Over the border
By Sue Hallstein and Rolf Taylor
By Sue Hallstein and Rolf Taylor
Quote of the Month
- Arabian Proverb
(.c The
Associated Press)
After a poll of suggestions on the Lymenet Newsgroup (sci.med.diseases.lyme) for a bumper sticker to promote Lyme Disease awareness, the following was chosen:
|
LYME DISEASE A National Health Crisis |
Produced by Lyme Awareness, Inc., it is 3 �" X 11 � "- a very emphatic
black-on-white..
For quantities of 1 - 5: $ 2.00 each (includes postage))
For quantities of more than 5: $ 1.50 each (includes postage
Send
check or money order made payable to LYME AWARENESS, INC
Mail to: Lyme
Awareness, Inc., P O Box 20107, Bowling Green, KY 42102-6107
Be sure to
include your full mailing address All orders will be shipped within 24 hours
of received request. Profits will be donated to Lyme disease research.
Presented at the International Conference on Emerging Infectious
Diseases 2000 (July ,2000,Atlanta)
Abstract: HCV-Blood Safety � 4
S. J. Badon1, R. G. Cable1, J. Aslanzadeh
1. American Red Cross Connecticut Region, Farmington, CT; 2. UCONN, John Dempsey Hospital, Farmington, CT
It has been demonstrated that Borrelia burgdorferi, the etiologic agent of Lyme disease, can be cultured from blood. The period of spirochetemia appears to be brief. Although Borrelia burgdorferi can survive under blood bank storage conditions transfusion transmission has not been demonstrated. Herein we describe the isolation of Borrelia burgdorferi in a second Connecticut blood donation.
The blood donor was a 41 year old female with a questionable tick exposure. A day after blood donation she noted a bulls eye lesion over her side. She went to her physician and a clinical diagnosis of Lyme disease was made and she was treated with antibiotics. Serologic testing for Lyme disease was not performed. The donor notified the blood center and the donation was quarantined, sent for PCR analysis.
PCR was performed with a primer set for OSP A on the blood donation. The results were positive.
This finding is the second case in Connecticut and further supports the possibility that it may be possible to transmit Borrelia burgdorferi in a blood transfusion. However, since the spirochetemic phase of infection appears to be brief, the likelihood of transmission is low.
Nevertheless, it is expected that transfusion transmitted Lyme disease will be identified in the future.
In an initial experiment, culture-grown Borrelia burgdorferi was added to freshly collected uninfected human blood. This in vitro study demonstrated that more spirochetes were distributed into the plasma than into the serum fraction.
In a subsequent clinical study, B. burgdorferi was recovered from plasma cultures of approximately 50% of 42 patients with early Lyme disease associated with erythema migrans.
The rate of recovery from plasma cultures was significantly greater than that from serum cultures.
- As reported in the Cleveland Plain Dealer's "Plain Dealing" - Consumer wise, you are entitled to a copy or a detailed summary of your medical records. If you are denied copies, or a copying fee is prohibitive, complain to the Ohio Medical Board. You can get a complaint form by calling 1-800-554-7717 or contacting www.state.oh.us/med/.
-Senator Arlen Specter, Rep. PA wants to hear more about Lyme disease patients' problems with getting proper treatment by doctors and insurance companies. Send your story to Senator Specter at 711 Senate Hart Bldg, Wash. DC 20510 or e-mail [email protected] .
ROCKY MOUNTAIN SPOTTED FEVER
There have been 1 8 deaths due to Rocky Mountain Spotted Fever in Ohio from 1964 to 1999. All lived in the southern half of Ohio.
Increased awareness of tick-borne diseases has probably contributed to a decrease in the mortality rate over the past 35 years. However, ticks which transmit RMSF are still abundant in Ohio, so the risk of infection has probably not changed. One factor which contributes to an increased likelihood of death is delay in seeking medical attention after symptoms occur. RMSF is amenable to early treatment with antibiotics: tetracyclines or chloramphenicol. Treatment should be initiated based on clinical findings, without waiting for laboratory confirmation.
Symptoms include: sudden onset of fever, headache, and myalgia,. usually followed by a maculopapular rash, first appearing on the arms and legs, and then spreading to the trunk, palms and soles. The incubation period for RMSF is 2-14 days after tick contact. (bite or handling a tick). Early RMSF may be confused with ehrlichiosis, meningococcemia, and enteroviral infection.
The bacterium which causes RMSF is Rickettsia rickettsii, related to species of Rickettsia which cause various types of typhus.
The vector of RMSF in Ohio is the American dog tick, (Dermacentor variabilis), the only established vector of RMSF in Ohio.
Forty-eight other cases (51.6%) were not reported to CDC because.: 1) they did not meet the epidemiological case criteria established by CDC, 2) there was insufficient information provided in the case report, or 3) because the physician changed the final diagnosis.
Although most LD cases occur during the summer, they are diagnosed throughout the year. This is because symptoms may be slow to develop and because some are diagnoses of chronic illness. The date of onset may actually have been years prior to diagnosis.
Lyme Disease has not been proven to be endemic in Ohio because the
bacterium, Borrelia burgdorferi, has never been isolated or identified from a
resident animal or tick. Hundreds of Ixodes ticks and Ohio rodents have been
tested for B. burgdorferi, with negative results. This does NOT mean that Lyme
disease cannot be acquired in Ohio. We believe that it can. Eleven
Black-legged ticks, the vector of Lyme disease in the eastern U.S., have been
found in Ohio. They were probably brought into the state on migratory birds or
other travelers. We can only guess at the real number of these vector ticks
being brought into Ohio each year.
Symptoms. An early LD symptom is
the rash or ring lesion, called erythema migrans (EM) or etythema chronicum
migrans, at the site of tick bite. Other symptoms include fatigue, headache,
neck pain, stiffness in muscles or joints, fever, and swollen glands. The rash
may not develop for over a month - if it ever does. A large percentage of
cases (20%-25%) apparently never develop an EM rash. Chronic disease may have
a wide range of arthritic, cardiac, and neurologic symptoms. These chronic
symptoms may develop months or even years after infection. The incubation
period for LD is considered to be 3-30 days.
The bacterium,
Borrelia burgdorferi, is the causative agent of LD. It is a spirochete-type of
bacterium, similar to the causative agent of syphilis, and closely related to
those species of Borrelia which cause relapsing fever.
The vector of
LD in the eastern U.S. is the Black-legged tick(Ixodes scapularis). No
other species of tick has been proven to be a vector of LD to humans in the
eastern U.S., although there is evidence that the rabbit tick, Ixodes
dentatus, may be a vector of the disease to rabbits.
Care should be exercised when removing ticks. If squeezed, the tick may inject bacteria involuntarily, like a mini-syringe. Secretions and tick feces may also be infective, so it is best to avoid touching the tick. Grasp tile tick as close to the Skin as possible using a fine-tipped tweezers or with fingers shielded with tissue paper or rubber gloves. Pull gently but firmly straight out until the tick pulls free. Wash the bite site with soap and water and apply an antiseptic. SAVE THE TICK. Place it in a pill vial or small jar and attach a note indicating the county where the tick was picked up and the date it was found.
The causative agent of human monocytic ehrlichiosis: Ehrlichia chaffeensis, rickettsia-like organisms, extremely small bacteria which are intracellular parasites of white blood cells.
Vector:The Lone Star tick, Amblyomma americanum. This tick has recently been discovered to be established ~n Jackson and Lawrence counties, probably elsewhere in southern Ohio.
Ehrlichiosis is known as an emerging infectious disease, but it has probably been around for a long time - just not recognized. The first case was diagnosed in 1986 in a 51-year-old man from Detroit who had been exposed to ticks in a rural area of Arkansas. The bacterium was first isolated from the blood of a U.S. Army reservist at Fort Chaffee Arkansas, and was subsequently named Ehrlichia chaffeensis after the locality of the first isolate.
Symptoms of human ehrlichiosis begin 1-21 days following infection and resemble those of Rocky Mountain Spotted Fever. The spectrum of disease ranges anywhere from an illness so mild or asymptomatic that no medical attention is sought to a severe, life threatening condition. There have been a small number of fatalities. Clinical features characteristically are high fever and headache, but may also include malaise, myalgias (muscle aches), vomiting, and anorexia (loss of appetite). A rash similar to that seen in cases of Rocky Mountain Spotted Fever is rare (20% of cases). Since the bacterium invades white blood cells, the body's immune system is adversely affected.
Human monocytic ehrlichiosis is not yet a nationally notifiable disease, so the true incidence is uncertain. It is expected that Ehrlichiosis will become a reportable disease in Ohio during 2000. The disease is suspected to be at least as common as Rocky Mountain Spotted Fever. More than 400 cases have been reported to the Centers for Disease Control from at least 30 states, principally in the southeastern U.S. north to the Great Lakes states. No human cases of the disease have occurred in Ohio (two cases have been reported in persons who traveled to Kentucky).
Information compiled by staff of the Vector-borne Disease Program - Ohio Department of Health, 900 Freeway Drive North, Columbus, OH 43229 Tel:614-752-1029 FAX:614-752-1391 e-mail: [email protected]