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Coping with Lyme disease
  
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Local victims hope to warn others to take precautions
By Frank Mortimer
Three generations of a Jack Tobichuk's Foxboro family have been stricken with Lyme disease. And Foxboro police officer Doug Miller is quietly suffering with late-stage Lyme.
After a five-day hospitalization in Boston, Miller, 58, is hooked up at home to a sterile line that snakes into his arm and reaches toward his heart, a port to deliver medications he will have to take for months, if not years.
What Miller learned about late stage Lyme, which is hard to treat, "put me in a fear for my life as I have never known," the 30-plus year military veteran admits.
"I forgot how to write my last name," said Tobichuk, an engineer, describing just one of his symptoms of the acute stage of his illness. "I couldn't remember the names of clients I've known for 20 years."
His 38-year-old daughter, Cheryl Tobichuk, will be tied indefinitely to an intravenous tube for her daily antibiotic injections.
A 1988 graduate of Foxboro High School, Cheryl has returned to work as a certified medical coder and tries to greet the world with a smile.
But she lives with pain, weakness, and fear that her long-standing Lyme will further attack her nervous system, bringing Parkinson's disease, multiple sclerosis or another crippling disorder.
Only Jack's three-year-old grandson, Gavin Amara, whose illness was caught early and aggressively treated at the insistence of his "Lyme-literate" family, appears to be cured.
"It's in your backyard," Cheryl said. "This is not a rare disease that only a few can catch, and you need to be educated before you go into the doctor's office."
These three adults agreed to talk with The Foxboro Reporter not to draw any attention to their own suffering. They spoke in the hope of sparing their Foxboro neighbors from years of pain, fear, debility -- and potentially astronomical medical costs.
"I just want to get people educated, because they don't know," Miller said.
Miller credits his wife, Mary O'Brien Miller with a vital role in advocating for further testing -- and finding the right doctor -- when his illness was first misdiagnosed as a hernia.
Prevention begins with knowledge and vigilance, Miller and the Tobichuk's said.
The illness is contracted through the bite of a tiny deer tick or tick nymph, which - unlike the dog tick - may be small as the period at the end of this sentence.
The ticks often carry several types of germs, causing "co-infections" that further complicate diagnosis and treatment -- and multiply the victim's suffering and risk.
Jack Tobichuk directs his message to parents:
Check your children every day they play outdoors. The ticks are climbers. Often dropped from the fur of deer or smaller animals, the ticks climb to the tips of tall grass and other vegetation, hitch a ride when brushed by passing skin or clothing, then climb to find a place to draw blood from their host.
His wife, Shayla Tobichuk, a gardener, sprays her clothes with permethrin, which can kill ticks.
Cheryl Tobichuk stresses that you don't have to walk in the woods to encounter deer ticks. Pets can carry them into the house -- and so can you, after walking on your lawn or through fallen leaves.
"I will never walk on grass again," she said, a rule she does not expect others to follow but which does reflect the degree of her trauma.
Jack Tobichuk, 65, of 72 Spring St., has been fighting his Lyme with oral antibiotics for the past six months. Having received 10-days of preventive antibiotics after he was bitten by a tick, yet still falling ill with the disease, he is convinced that the treatment protocols for Lyme need to change.
Some doctors agree -- and a battle is raging.
Many people with Lyme have been denied medical insurance coverage for long-term antibiotic therapy, on grounds that "chronic Lyme disease" is non-existent, Cheryl said.
Guidelines set down by the Infectious Diseases Society of America, the national governing body that sets standards used by some health insurance companies to make coverage decisions, have come under fire.
Last May, Connecticut Attorney General Richard Blumenthal announced that his antitrust investigation "uncovered serious flaws in the Infectious Disease Society of America's process for writing its 2006 Lyme disease guidelines..."
"The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care," Blumenthal wrote. "They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions."
Several doctors in key roles on the panel were found to have conflicts of interest.
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."
The IDSA was forced to reassess the guidelines with the help of an outside arbiter.
"There is no awareness out there. There are people out there who we look up to and they're supposed to be taking care of us, and they're misleading us," Cheryl Tobichuk said.
Lyme can be contracted anywhere in the state, according to the Massachusetts Dept. of Public Health.
But the geographic landscape of Lyme tick infestation in the Bay State is changing.
A biologist quoted in a Chronicle TV special on Lyme last Friday night said that in about five years the Interstate 95 and 495 belts will have as many Lyme cases per capita as now found on Nantucket -- a hotbed of the illness, according to Rhys Bowen of Foxboro, a wildlife biologist who works on the island and checks himself twice a day for ticks to keep safe.
Deer are seen most everywhere in Foxboro, feeding on shrubs or walking through yards. The ticks they drop can remain active, in search of a host, whenever the temperatures rises above freezing, Cheryl said.
Estimates on how long it takes for the corkscrew-like spirochete Lyme bacteria to enter the blood once the tick pierces the skin range from four to 48 hours.
The notorious bulls-eye rash, or a shapeless rash, associated with Lyme may be present - or may never be seen.
Some tick bites are painful. The bite that infected Jack Tobichuk woke him at night like a cigarette burn, and did produce the bulls-eye. Yet some people never know they were bitten.
EPIDEMIC
Miller's nightmare began last August, when he collapsed after coming down with such symptoms as fever, chills, drenching sweats, headache, achy joints and muscles, shooting pains, abdominal pain, fatigue and nausea.
He was transported to a local hospital, where an emergency room doctor diagnosed his swollen glands as a hernia. A surgeon later disagreed.
On Sept. 2, an infectious disease specialist diagnosed him with Babesiosis, which is caused by a tick-borne parasite.
Moved to the Lahey Clinic in Burlington, he tested positive for chronic Lyme disease, late-stage, with still an unknown disease while being treated for Babesiosis.
Miller said infectious disease specialists gave him and his wife, Mary O'Brien Miller, detailed information about the symptoms, diagnosis, treatment of Lyme disease and other tick-borne disease.
Miller was started on a regimen of intensive antibiotics therapy, delivered through a peripherally inserted central catheter, and is still on the PICC line, with many symptoms and side effects enduring.
"I am wondering when it will end," Miller said.
He has found a book "Cure Unknown - Inside the Lyme Epidemic," by Pamela Weintraub, to offer perspective on the disease and the controversy among doctors over testing, treatment -- and costs.
"Not all patients with Lyme disease will have all symptoms," Miller said. "This is why there is a concern with educating the public on Lyme disease with in-depth information on the symptoms, diagnosis, treatment, and prevention."
The illness affects multiple body systems, and can become life-threatening.
Lyme disease may be misdiagnosed as multiple sclerosis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, lupus, ALS, or other autoimmune and neurodegenerative diseases, Miller learned.
"This is just a Lyme epidemic that people don't even know about," Miller said, adding that some doctors fail to test for it or report it to state authorities.
COURAGE
According to local health department records from the state, 16 Foxboro residents this year were reported to have Lyme disease. In 2007 Foxboro had 19 reported cases, in 2006 had 25 reported cases.
But the Tobichuks agree that some doctors are failing to report the cases they treat.
More seriously, because there is no 100 percent reliable test for Lyme, they fear that some Foxboro people are going from doctor to doctor with a complex of mysterious symptoms caused by undiagnosed, untreated Lyme.
"I must very strongly emphasize that all diagnoses of tick-borne infections remains a clinical one," revealed by an array of symptoms rather than a positive blood test, Dr. Joseph J. Burrascano Jr., board member of the International Lyme and Associated Diseases Society, wrote in a key 2005 paper on diagnosis and treatment.
Cheryl Tobichuk went to about 12 doctors, including specialists, over three years before she was diagnosed on Nov. 14, 2007 by Dr. Sam Donta in Falmouth, who is currently treating her father.
Late stage Lyme is a complex, multi-system disease with many symptoms, because the immune system is low, Cheryl said. "It goes everywhere," she said of the disease.
Cheryl has suffered numbness on her right side, extreme fatigue, muscle twitches and terrible pain in her face, as well as memory loss and cognitive problems.
"People don't know what brain fog is until they've had Lyme disease," she said. "You can't remember where you live. I have to write everything down. A huge part of my intelligence has been taken away."
With long-term antibiotic therapy, her muscle pain has abated. She's still dealing with neurological damage, the problems with memory, twitching and balance.
"The neurological is the hardest to get rid of, the last symptoms to leave," even with intensive, long-term therapy, she said.
Cherly works a second job one day a week for a hotel caterer to pay for the antibiotic treatments.
Convinced that most primary care doctors and other physicians are ignorant about the complexities of Lyme diagnosis and treatment, Cheryl now travels to Hyde Park, N.Y. for treatment by a Lyme specialist, Richard Horowitz, a member of the International Lyme and Associated Diseases Society.
"You can't even go to your primary care physician. They don't even know how to read a Western blot. Some don't even know what a Western blot is," she said, referring to one of the more sophisticated tests. Cheryl said more than one doctor simply refused to give her the more expensive Western blot, which eventually was done and proved positive.
"It was starting to feel humiliating going to a doctor's appointment, because they were not taking me seriously. They were saying 'there's nothing wrong' and 'it's not Lyme.' "
For many weeks, Cheryl, who used to run for miles, was barely able to get out of bed. Though underweight and weakened, she has made her way back to a gym to do the light exercises recommended for Lyme patients.
"You have to get up every day," she said. "You have to work. You have to pretend nothing's wrong. But the disease kills your spirit.
"It takes more courage to deal with something day in and day out and function and have a life with a body that isn't cooperating," Cheryl said. "You can call it an obsession. My health is on my mind every moment of my waking life. I try to work and try to keep busy."
After a five-day hospitalization in Boston, Miller, 58, is hooked up at home to a sterile line that snakes into his arm and reaches toward his heart, a port to deliver medications he will have to take for months, if not years.
What Miller learned about late stage Lyme, which is hard to treat, "put me in a fear for my life as I have never known," the 30-plus year military veteran admits.
"I forgot how to write my last name," said Tobichuk, an engineer, describing just one of his symptoms of the acute stage of his illness. "I couldn't remember the names of clients I've known for 20 years."
His 38-year-old daughter, Cheryl Tobichuk, will be tied indefinitely to an intravenous tube for her daily antibiotic injections.
A 1988 graduate of Foxboro High School, Cheryl has returned to work as a certified medical coder and tries to greet the world with a smile.
But she lives with pain, weakness, and fear that her long-standing Lyme will further attack her nervous system, bringing Parkinson's disease, multiple sclerosis or another crippling disorder.
Only Jack's three-year-old grandson, Gavin Amara, whose illness was caught early and aggressively treated at the insistence of his "Lyme-literate" family, appears to be cured.
"It's in your backyard," Cheryl said. "This is not a rare disease that only a few can catch, and you need to be educated before you go into the doctor's office."
These three adults agreed to talk with The Foxboro Reporter not to draw any attention to their own suffering. They spoke in the hope of sparing their Foxboro neighbors from years of pain, fear, debility -- and potentially astronomical medical costs.
"I just want to get people educated, because they don't know," Miller said.
Miller credits his wife, Mary O'Brien Miller with a vital role in advocating for further testing -- and finding the right doctor -- when his illness was first misdiagnosed as a hernia.
Prevention begins with knowledge and vigilance, Miller and the Tobichuk's said.
The illness is contracted through the bite of a tiny deer tick or tick nymph, which - unlike the dog tick - may be small as the period at the end of this sentence.
The ticks often carry several types of germs, causing "co-infections" that further complicate diagnosis and treatment -- and multiply the victim's suffering and risk.
Jack Tobichuk directs his message to parents:
Check your children every day they play outdoors. The ticks are climbers. Often dropped from the fur of deer or smaller animals, the ticks climb to the tips of tall grass and other vegetation, hitch a ride when brushed by passing skin or clothing, then climb to find a place to draw blood from their host.
His wife, Shayla Tobichuk, a gardener, sprays her clothes with permethrin, which can kill ticks.
Cheryl Tobichuk stresses that you don't have to walk in the woods to encounter deer ticks. Pets can carry them into the house -- and so can you, after walking on your lawn or through fallen leaves.
"I will never walk on grass again," she said, a rule she does not expect others to follow but which does reflect the degree of her trauma.
Jack Tobichuk, 65, of 72 Spring St., has been fighting his Lyme with oral antibiotics for the past six months. Having received 10-days of preventive antibiotics after he was bitten by a tick, yet still falling ill with the disease, he is convinced that the treatment protocols for Lyme need to change.
Some doctors agree -- and a battle is raging.
Many people with Lyme have been denied medical insurance coverage for long-term antibiotic therapy, on grounds that "chronic Lyme disease" is non-existent, Cheryl said.
Guidelines set down by the Infectious Diseases Society of America, the national governing body that sets standards used by some health insurance companies to make coverage decisions, have come under fire.
Last May, Connecticut Attorney General Richard Blumenthal announced that his antitrust investigation "uncovered serious flaws in the Infectious Disease Society of America's process for writing its 2006 Lyme disease guidelines..."
"The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care," Blumenthal wrote. "They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions."
Several doctors in key roles on the panel were found to have conflicts of interest.
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."
The IDSA was forced to reassess the guidelines with the help of an outside arbiter.
"There is no awareness out there. There are people out there who we look up to and they're supposed to be taking care of us, and they're misleading us," Cheryl Tobichuk said.
Lyme can be contracted anywhere in the state, according to the Massachusetts Dept. of Public Health.
But the geographic landscape of Lyme tick infestation in the Bay State is changing.
A biologist quoted in a Chronicle TV special on Lyme last Friday night said that in about five years the Interstate 95 and 495 belts will have as many Lyme cases per capita as now found on Nantucket -- a hotbed of the illness, according to Rhys Bowen of Foxboro, a wildlife biologist who works on the island and checks himself twice a day for ticks to keep safe.
Deer are seen most everywhere in Foxboro, feeding on shrubs or walking through yards. The ticks they drop can remain active, in search of a host, whenever the temperatures rises above freezing, Cheryl said.
Estimates on how long it takes for the corkscrew-like spirochete Lyme bacteria to enter the blood once the tick pierces the skin range from four to 48 hours.
The notorious bulls-eye rash, or a shapeless rash, associated with Lyme may be present - or may never be seen.
Some tick bites are painful. The bite that infected Jack Tobichuk woke him at night like a cigarette burn, and did produce the bulls-eye. Yet some people never know they were bitten.
EPIDEMIC
Miller's nightmare began last August, when he collapsed after coming down with such symptoms as fever, chills, drenching sweats, headache, achy joints and muscles, shooting pains, abdominal pain, fatigue and nausea.
He was transported to a local hospital, where an emergency room doctor diagnosed his swollen glands as a hernia. A surgeon later disagreed.
On Sept. 2, an infectious disease specialist diagnosed him with Babesiosis, which is caused by a tick-borne parasite.
Moved to the Lahey Clinic in Burlington, he tested positive for chronic Lyme disease, late-stage, with still an unknown disease while being treated for Babesiosis.
Miller said infectious disease specialists gave him and his wife, Mary O'Brien Miller, detailed information about the symptoms, diagnosis, treatment of Lyme disease and other tick-borne disease.
Miller was started on a regimen of intensive antibiotics therapy, delivered through a peripherally inserted central catheter, and is still on the PICC line, with many symptoms and side effects enduring.
"I am wondering when it will end," Miller said.
He has found a book "Cure Unknown - Inside the Lyme Epidemic," by Pamela Weintraub, to offer perspective on the disease and the controversy among doctors over testing, treatment -- and costs.
"Not all patients with Lyme disease will have all symptoms," Miller said. "This is why there is a concern with educating the public on Lyme disease with in-depth information on the symptoms, diagnosis, treatment, and prevention."
The illness affects multiple body systems, and can become life-threatening.
Lyme disease may be misdiagnosed as multiple sclerosis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, lupus, ALS, or other autoimmune and neurodegenerative diseases, Miller learned.
"This is just a Lyme epidemic that people don't even know about," Miller said, adding that some doctors fail to test for it or report it to state authorities.
COURAGE
According to local health department records from the state, 16 Foxboro residents this year were reported to have Lyme disease. In 2007 Foxboro had 19 reported cases, in 2006 had 25 reported cases.
But the Tobichuks agree that some doctors are failing to report the cases they treat.
More seriously, because there is no 100 percent reliable test for Lyme, they fear that some Foxboro people are going from doctor to doctor with a complex of mysterious symptoms caused by undiagnosed, untreated Lyme.
"I must very strongly emphasize that all diagnoses of tick-borne infections remains a clinical one," revealed by an array of symptoms rather than a positive blood test, Dr. Joseph J. Burrascano Jr., board member of the International Lyme and Associated Diseases Society, wrote in a key 2005 paper on diagnosis and treatment.
Cheryl Tobichuk went to about 12 doctors, including specialists, over three years before she was diagnosed on Nov. 14, 2007 by Dr. Sam Donta in Falmouth, who is currently treating her father.
Late stage Lyme is a complex, multi-system disease with many symptoms, because the immune system is low, Cheryl said. "It goes everywhere," she said of the disease.
Cheryl has suffered numbness on her right side, extreme fatigue, muscle twitches and terrible pain in her face, as well as memory loss and cognitive problems.
"People don't know what brain fog is until they've had Lyme disease," she said. "You can't remember where you live. I have to write everything down. A huge part of my intelligence has been taken away."
With long-term antibiotic therapy, her muscle pain has abated. She's still dealing with neurological damage, the problems with memory, twitching and balance.
"The neurological is the hardest to get rid of, the last symptoms to leave," even with intensive, long-term therapy, she said.
Cherly works a second job one day a week for a hotel caterer to pay for the antibiotic treatments.
Convinced that most primary care doctors and other physicians are ignorant about the complexities of Lyme diagnosis and treatment, Cheryl now travels to Hyde Park, N.Y. for treatment by a Lyme specialist, Richard Horowitz, a member of the International Lyme and Associated Diseases Society.
"You can't even go to your primary care physician. They don't even know how to read a Western blot. Some don't even know what a Western blot is," she said, referring to one of the more sophisticated tests. Cheryl said more than one doctor simply refused to give her the more expensive Western blot, which eventually was done and proved positive.
"It was starting to feel humiliating going to a doctor's appointment, because they were not taking me seriously. They were saying 'there's nothing wrong' and 'it's not Lyme.' "
For many weeks, Cheryl, who used to run for miles, was barely able to get out of bed. Though underweight and weakened, she has made her way back to a gym to do the light exercises recommended for Lyme patients.
"You have to get up every day," she said. "You have to work. You have to pretend nothing's wrong. But the disease kills your spirit.
"It takes more courage to deal with something day in and day out and function and have a life with a body that isn't cooperating," Cheryl said. "You can call it an obsession. My health is on my mind every moment of my waking life. I try to work and try to keep busy."
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The following are comments from the readers. In no way do they represent the view of foxbororeporter.com.
NH Lyme wrote on Dec 9, 2008 9:43 AM:
" I am beginning to see first hand what this struggle is all about. I was a perfectly healthy guy until I became sick and tested positive for Lyme this past summer. It is nothing short of a crime that the mainstream medical community does not take this seriously and as a result a lot of people go on to suffer without getting the proper treatment. We need more stories like this to make people aware, and let the CDC and the medical community know that Lyme disease is a real and growing problem that is ruining people's lives. My thoughts and prayers are with this family and with all those affected by this. "
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Hope from NJ wrote on Dec 1, 2008 10:58 AM:
She had been misdiagnosed by 10 or more doctors, neurologists and specialist, some good and some not so good, over almost a 10 year period. Multiple Sclerosis was always the possibility until one last test showed positive for Lyme and Babesiosis.
From a medical insurance perspective, I am sure the amount spent just on daily maintenance nerve pain medications, plus the multiple MRIs, spinal taps and hospitalizations far exceeded the cost of the Lyme treatment.
If we all readily accept that malaria is spread by mosquitoes and kills millions around the world, why can't our society take seriously this disease vector right in our own backyards, parks, and neighborhoods?
I think I understand why. Most people do not get sick from their backyards. Most of us just grab our tweezers when we find a tick and pull it off carefully and forget about it. Most are unaffected by the bite, or properly gain treatment after the first bullseye patch appears and can dismiss the disease as easily solved with some pills. But then there are those who either do not get treated, or do not find a bullseye rash: their disease runs into the long term. For them, the lack of a proper, reliable test will always muddle the diagnosis of this disease and its co infections. And treatment requires careful testing, diagnosis and intelligent treatment -- which is probably more than a regular physician can or is willing to do. Lyme is not quite textbook yet, and a large minority of people are suffering for it.
Lyme is a disease that for some reason people don't talk about. I hope that the details in this article help at least just one person.
Good luck to the family. You can do it. It is just a bug. You've got it by the tail now. "