Melissa Kaplan's
Lyme Disease
Part of the Anapsid.org Chronic Neuroimmune Diseases Information Resources for CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

If you get bitten by a black-legged tick, what's your next move?

If you start showing symptoms of Lyme disease, one school of treatment argues you should take at least two months of antibiotics for the simplest case and much more for complicated ones.

You can also expect the tick to be carrying more than the strain of bacteria that causes the disease.

Dr. Richard Horowitz of Hyde Park, N.Y., president-elect of the International Lyme and Associated Diseases Society (ILADS), said "99.9 percent of the patients I see with Lyme disease are co-infected. There are 10 other diseases we should be looking for."

Horowitz spoke last week at a forum held by the Newtown Lyme Disease Task Force.

The second school of thought would argue that the longest you should ever take antibiotics is 28 days - even if you've got the painful arthritis that's a symptom of Lyme.

It also questions whether there's a condition called chronic Lyme disease - a persistent infection that can last for years - and discounts the threat of omnipresent co-infection.

"The evidence does not support that - far from it," said Dr. Gary Wormser, chief of the infectious diseases division at New York Medical College in Valhalla, N.Y., and vice-chairman of its department of medicine.

The differences between the two approaches and the implications for the way patients are treated for Lyme disease are profound. And this comes at a time of increasing threat from the disease.

Lyme disease is at the epidemic stage in the state. There were 1,810 cases reported to the state Department of Public Health in 2005, compared to 1,348 in 2004 - a 26 percent increase.

Connecticut has the highest per capita rate of Lyme disease in the country with about 136 cases per 100,000 people.

But by all accounts, the disease is underreported by a factor of 10 or more.

"The Centers for Disease Control and Prevention reported there were 19,804 cases (nationwide) of Lyme disease in 2004," said Pat Smith, president of the Lyme Disease Association, a patient advocacy group, who also spoke at the Task Force meeting.

"That means there were about 200,000 cases, and that doesn't count the ones that don't fit the CDC requirements."

Lyme disease is caused by a cork-screw-shaped bacteria, Borrelia burgdorferi. The black-legged tick - also known as the deer tick - ingests the bacteria when it feeds on deer, white-footed mice and small rodents, which act as sort of moveable reservoirs of Borrelia. When an infected tick bites a human, the human can get infected as well.

The initial symptoms of the disease can include a bull's-eye rash, fever, headache and sore joints - like a case of the flu without a cough. If the disease is diagnosed early, it can usually be treated successfully with a month of antibiotics.

"We've found there's a six-week window where treatment is really successful," said Thomas Forschner, executive director of the Lyme Disease Foundation based in Tolland, Conn.

But only about half the people infected by a tick bite get the telltale rash. Some have no symptoms at all. Others are treated with antibiotics, but relapse. They can develop much more severe symptoms, including swollen joints.

But because the most common blood tests for Lyme disease are highly inaccurate, doctors who rely on them can easily misdiagnose or disregard the symptoms. The CDC says doctors should not base a diagnosis on those tests but on clinical observations.

"You only use the blood tests to support your diagnosis," said Horowitz of ILADS, whose members are often doctors whose practices are devoted to treating the disease.

What's most controversial is the diagnosis of chronic Lyme disease.

Doctors in the ILADS and patient advocates like Smith insist that people can develop long-term, recurring Lyme infections that can manifest themselves in a host of symptoms - chronic fatigue, sight and hearing loss, memory loss, depression and personality changes, heart damage and arthritic pain that can flare up in different places.

"It's a multi-system bacterial infection," Horowitz said at the Newtown Lyme Task Force meeting. "There are 300 different strains of Borrelia burgdorferi internationally and 100 in the United States. The symptoms can come and go and they can migrate. It's a gestalt of symptoms."

Doctors who are convinced chronic Lyme disease exists treat those patients with long-term courses of antibiotics, often lasting months or years. The ILADS criteria do not limit how long patients should be on antibiotics, leaving that up to the doctors' discretion.

Horowitz said his rule of thumb is to continue antibiotics until a patient is symptom-free for two months.

Horowitz also said ticks carry several other illnesses, including anaplasmosis, the malaria-like babesiosis, and bartonella, commonly known as Cat Scratch fever. All of these come with their own set of symptoms, which must be treated as well. This means patients must get a mix of antibiotics.

"When I see a patient with chronic Lyme disease, I see a patient with chronic Lyme and co-infection," he said.

But Wormser of New York Medical College follows the guidelines of the Infectious Diseases Society, or IDSA. He said there's no evidence for so much co-infection in Lyme patients. IDSA also says there's no scientific proof for a diagnosis of chronic Lyme disease, and thus no need whatsoever for long-term antibiotic therapy.

"Study after study has shown this," he said. They've tested patients who claim they have chronic Lyme disease. Half never had Lyme disease to begin with.

"Another study at Yale showed that half the people being treated for chronic Lyme actually had other treatable diseases," Wormser said.

Wormser co-authored the IDSA Lyme disease guidelines. The society represents about 8,000 infectious disease specialists in the United States.

The society is now rewriting those guidelines. Wormser said he does not expect them to be substantially different than they are now .

But proponents of more liberal use of antibiotics to treat Lyme said last week that they expect, if anything, the new IDSA guidelines will be even more conservative than they are now.

"It doesn't make any sense," said Forschner of the Lyme Disease Foundation about any reduction in the IDSA guidelines, which now allow
14 to 28 days of antibiotic treatment. "What difference does a little bit more of antibiotics make?"

Forschner said the scientific literature does not support long-term antibiotic therapy for early Lyme disease, which some doctors now prescribe.

"I think the new IDSA guidelines are in reaction to that. But why swing the pendulum so far in the other direction?" Forschner said.

There is one substantial change to the IDSA guidelines, Wormser said. It will advise doctors that, on a selective basis, they can prescribe a single large dose of antibiotics to a patient immediately after a black-legged tick bite, before the patient starts exhibiting any symptoms of the disease.

A 2001 study in the New England Journal of Medicine showed that such treatment, given within three days of a deer tick bite, was 87 percent effective in stopping the disease in its tracks.

Smith of the Lyme Disease Association said what her group would like is for doctors to tell patients with Lyme disease that there are two established standards of care - the conservative one endorsed by the infectious diseases association, and the liberal one written by the International Lyme and Associated Diseases Society.

Then, at the very least, she said, patients would know the options. "We need to make sure the patients are aware of this."

Smith praised a bill in the U.S. Congress sponsored by Sen. Christopher Dodd, D-Conn., and Sen. Rick Santorum, R-Pa., that would provide an additional $100 million in federal funding for Lyme research over the next five years.

Smith said the federal government currently spends about $32 million a year for research on the disease and all its manifestations.

"Another $20 million a year will be a significant increase," she said.

The funding is also tied to specific goals, including finding a reliable blood test for Lyme infection.

"It took researchers five or six years to find a reliable blood test for AIDS," she said. "We've know about Lyme disease for 30 years and we still don't have a reliable blood test. That's outrageous."

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