With chronic Lyme disease, debate over diagnosis, treatmentPosted to: Health and Medicine News
Kimmie Carroll lost almost a decade of her life to lyme disease, too weak and sick to do more than lay on the couch in Chesapeake home.
Exposed to lyme disease when she was 19 in 2000, she had IV antibiotics for more than a year and is now on oral antibiotics and pain medication.
She went undiagnosed for many years. (Vicki Cronis-Nohe | The Virginian-Pilot)
By Elizabeth Simpson
The Virginian-Pilot
© February 21, 2010
They speak a common language in search of a cure.
First, their symptoms: fatigue, joint pain, headaches, and a mental fog that can last for weeks and months, even years.
"I couldn't drive or feel my feet," said Chesapeake resident Kimmie Carroll. "I'd lie in bed and my body would feel paralyzed. I didn't leave the house for a year."
Second, the journey from one doctor to another for treatment: rheumatologists, neurologists, infectious-disease specialists, some of whom say there is nothing wrong with them or there is nothing they can do for them.
Third, the name they give their ailment - "chronic Lyme disease" - and the descriptor of those who helped them: "Lyme-literate doctors."
It's a controversial world they travel, given a starting point that is fairly straightforward.
Lyme disease. It's caused by bacteria transmitted by the black-legged tick. Typical symptoms include fever, headache, fatigue and a characteristic "bull's-eye" rash.
That much people agree upon. Here's where the road divides:
Most mainstream scientists and doctors say the disease can usually be cured with less than a month of anti-biotics.
But there's a group of people - sufferers and some doctors - who say in some cases the bacteria slip into the bloodstream and produce a chronic ailment that can come and go and linger for months or years.
The best treatment, they say, is long courses of antibiotics.
The Infectious Diseases Society of America and the American Academy of Neurology - heavyweights in fields that treat this type of ailment - say there's no scientific evidence to support this theory, and that the prolonged use of antibiotics is dangerous.
Out of that juncture has grown a medical war:
Patient advocacy groups. Legislative bills, including some in Virginia, to protect doctors who prescribe more antibiotics than medical guidelines recommend.
Harassment against physicians who don't acknowledge "chronic" Lyme disease as a legitimate diagnosis. And investigations of those who do by medical boards.
"This is an extraordinarily contentious area," said Dr. Edward Oldfield, a professor and director of the infectious-disease division at Eastern Virginia Medical School.
"As a physician who has practiced for over 35 years, I find it very unfortunate and politicized."
Carroll said her experience with Lyme disease began in 2000 at the age of 19.
She had gone to a youth church retreat in Georgia. Within a week of getting home she had what she thought was the flu. Fever. Fatigue. Joint pain.
She ended up in the emergency room, where she was told that it was probably the flu but that if the symptoms didn't subside she might want to be tested for Lyme disease.
The fever subsided during the next few days, but she was left with fatigue, muscle pain and sleeplessness.
Remembering that the ER doctor mentioned Lyme disease, she went to an infectious-disease doctor.
She tested negative for Lyme, but because lab tests for Lyme are not always definitive, he prescribed four weeks of anti-biotics based on her symptoms.
She improved but still felt fatigue, so he prescribed four more weeks.
After that, he stopped.
"He said I needed to go somewhere else." Carroll said, "because he was not going to continue to give me antibiotics."
In February 2001, she went to The Johns Hopkins Hospital in Baltimore, where a doctor told her, "I don't think anything is wrong with you."
"I left feeling there was no hope for me," she said. "I was exhausted during the day over the next five years. I went to doctor after doctor. They kept having to increase pain medication and sleep medication."
One doctor recommended she see a psychiatrist.
In 2005, she traveled out of state to what she calls a "Lyme-literate doctor." He put her on IV antibiotics for 10 months. She started feeling better for the first time in years. A month after she went off, she got sick again.
"I had to drag myself military-style to the bathroom," she said. "I had to have someone with me 24/7. My mom quit work to take care of me."
Carroll went back on IV antibiotics for five more months and improved. After that, she took oral antibiotics, which she continues to take.
"If I had gone by their guidelines," she said, "I would have been dead."
Her insurance company did not agree, and it would not pay for the extended use of antibiotics. She paid out of pocket to the tune of $25,000. Friends and family held fund raisers for her.
"I still owe $13,000," she said.
She won't give the name or location of her doctor, for fear he'd be investigated.
"We are limited to where we can go," she said. "We have to be a secret society."
As unusual as Carroll's story is, the themes are common among the 100 or so members of the Hampton Roads chapter of the National Capital Lyme and Tick-
Borne Disease Association. The group is a part of a Washington, D.C.-based organization of 1,800 members.
Joy Walker, who directs the local chapter, said many members have had a hard time getting a diagnosis, first being diagnosed with diseases such as multiple sclerosis, fibromyalgia or lupus.
Some travel two to eight hours to find "Lyme- literate doctors" who prescribe long-term anti-biotics.
Three of the doctors who have treated Walker have had their licenses investigated.
In Connecticut, where Lyme disease was discovered in the mid-1970s, a law was passed last year allowing doctors to prescribe long-term anti-biotics in treating "persistent Lyme disease" without fear of sanctions from state health regulators.
Legislators in other states have proposed similar bills, including one in Virginia that was aired before a General Assembly committee this month but got passed over to the next session.
The Infectious Diseases Society of America also held a hearing last year regarding treatment guidelines for Lyme disease and is scheduled to address whether it will revise guidelines early this year.
Because of the controversy, Walker said, some doctors don't want to deal with the disease.
"Some doctors become uncomfortable when Lyme disease is on the table," she said.
Debate over treatment aside, the Centers for Disease Control and Prevention reports that Lyme disease cases almost tripled between 1992 and 2008, from 10,000 to 28,000, with the majority reported in the Northeast.
David Gaines, an entomologist with the Virginia Department of Health, said reported cases of Lyme disease in the commonwealth more than doubled from 2006 to 2007, from 357 to 959, with the majority of cases concentrated in the north.
Sixty-one cases were reported in 2008 in the eastern region, which includes Hampton Roads, with the
highest incidence rates on the Eastern Shore.
Across the state and region, rates vary widely. For instance, Northampton County had an incidence rate of 55 per 100,000 people in 2008, while Portsmouth and Norfolk didn't report any cases.
Gaines attributes differences in rates to several factors. He said the ticks that spread the bacteria are more common in forest areas, and people are more likely to be exposed where new housing has sprouted in formerly wooded areas.
Also, once cases begin being reported by doctors in a particular area, the reporting of cases usually increases.
The numbers across the state are probably under-reported, he said, because diagnosing Lyme disease is difficult.
Many people who are bitten don't feel the bite and don't notice the rash - it doesn't typically burn or itch.
Blood tests for Lyme disease are often not definitive either, and repeated testing is sometimes required, along with a review of symptoms and the patient's possible exposure to ticks.
That difficulty has led some people to extreme corners:
some doctors who don't want to acknowledge the disease is out there at all, and conspiracy theorists who think the government is trying to protect insurance companies from paying for treatment.
Dr. Geoffrey Gubb practices medicine in Accomack County on the Eastern Shore. He is one of the outlier physicians who believes that Lyme disease can linger for years and that long-term courses of antibiotics are the best treatment for the condition.
The 72-year-old doctor said he treated his first case in 2005, and he has had the disease himself.
He says he has treated some 800 people with the disease - from Maryland, Delaware, Florida, Alaska, Kentucky and Tennessee - and has been investigated twice by the Virginia Board of Medicine for going outside recommended guidelines for antibiotic prescriptions and pain medication.
"I began to realize this is not a disease of people who are sitting around watching TV and eating bonbons," he said.
The difficulty with Lyme disease stems in part from the fact that the blood test used to diagnose it is not always conclusive.
"Everyone wants to go for 'evidence-based medicine,' " Gubb said, "but the problem comes when the evidence is no good. Then evidence-based medicine is nonsense. You default to what we have done for thousands of years. You listen to the patient."
Still, he knows he is in the minority.
"It's a very tough thing," he said. "You have to say 99 percent-plus doctors are wrong, and that this little group is right, and that's very difficult."
Oldfield, at EVMS, falls on the other side of the divide. Infectious-disease doctors do not dispute the reality of Lyme disease, he said, but rather the validity of the treatment some patients seek.
He also is concerned there are people who think they may have Lyme disease but don't.
He opposes long-term treatment for the symptoms in the absence of scientific study showing it helps.
"You might miss the true cause of what they have," he said. "They already have symptoms and complications that are significant."
Some end up getting infections, recurrent vomiting and other illnesses from overuse of antibiotics.
Oldfield said he has treated people in intensive-care units who were on antibiotics "for months on end when they never had Lyme disease to begin with. People need to be aware of what can happen to people if they get misdiagnosed and get into this chronic, never-ending treatment."
Elizabeth Simpson, (757)446-2635, elizabeth.simpson@pilotonline.com
© 1993-2010, HamptonRoads.com
article above is for debra linked above
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outstanding; for once accurate!! please write her; we need more of these long, informed/educated articles telling it like it is!! thanks all 
bettyg, iowa activist ... hugs
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feedback comments so far...RATE THEM PLEASE at online site!
Lyme disease a secret society.
Submitted by moyock105 on Sun, 02/21/2010 at 7:54 pm.
My husband has been fighting this for 25 years and was finally diagnosed several years ago. Finding a doctor that will work with you is almost impossible.
He has made substantial improvement on the continued antibiotic treatment. If he goes off of the antibiotics for any real length of time, it comes right back with a vengence.
I don't understand why this is such a taboo disease to deal with? Let the doctors do their jobs and stop persecuting them for doing it.
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Risks of Antibiotics
Submitted by novamom3 on Sun, 02/21/2010 at 5:28 pm.
I agree with the previous poster. Any risks of long-term antibiotics to the individual must be weighed against the risks of leaving disease untreated.
Insurance companies will argue against long-term antibiotics for life-ending diseases like advanced Lyme yet dermatologists routinely prescribe antibiotics for teenage acne and rosacea.
Not to minimize problem acne or rosacea, but compared to Lyme-induced ALS, which one calls for "risking" more antibiotics?
I also thought that the real problem with overuse of antibiotics is due to factory farms.
And what about all the antibacterial cleaning products? I find it amusing that antibacterial hand cleaners are even used in doctors' offices when we know that using regular soap appropriately kills most bacteria as well as viruses.
Lyme disease is a serious, serious problem. While we work on finding better ways to prevent Lyme, or alternative ways to treat, sufferers must have the right to do their own risk assessment and make their own decisions regarding treatment.
Cancer patients can choose chemo or no chemo, but the choice is and should be theirs and theirs alone.
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Long term antibiotics danger outweighs getting a life back?
Submitted by lt60 on Sun, 02/21/2010 at 4:51 pm.
I have a friend that was born with a weak immune system to fungus and bacteria.
He's been on strong antibiotics daily since he was 8 and he's now in his 40's. His doctors are at the national institute of Health in DC area.
Of course without the antibiotics he might die and even with them has come close a few times but I question the statement that the danger outweighs the benefit.
If these people are no longer able to live a normal life, they and their doctors should be making these choices not the government or the insurance companies.
2 or 0.
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