More antibiotics not the answer

Doctors: More antibiotics not the answer

Laura Walker works in her garden at her home in Wrentham. She believes she contracted Lyme disease three years ago while working in her garden. Daily News Photo/Dennis Stein

     With experts sounding the alarm about the uncontrolled growth of deer ticks that spread Lyme disease in MetroWest and Milford area neighborhoods, many more people will be exposed to an illness which has generated controversy in the medical community over how to treat it.

    For most, Lyme disease is a short-lived illness with no long-term consequences, but for others it's a life-threatening and life-changing event.

    Cathy Gleason, of Franklin, said her husband Ralph Gleason, 51, started feeling Lyme disease symptoms in 2011, but was not diagnosed until last October after his heart stopped beating. After being shocked three times to revive him, the hospital conducted tests that showed he was positive for Lyme disease and the bacteria had infected his heart which interfered with the electrical signals that control heartbeat. He has since been on intravenous antibiotics for eight months.

    “It’s a life-threatening and debilitating disease,” Gleason said. “He was in the hospital and almost died.”

    For some the disease is debilitating and persistent.

    Rachel Hofstetter, 24, of Holliston, said her experience with Lyme disease has been an eight-year battle.

    Hofstetter said she was diagnosed at 16 after complaining about fatigue, trouble concentrating, brain fog, headaches and dizziness. She was unable to finish high school so her parents home-schooled her.

    At one point during her treatment she was taking nine different antibiotics.

    “I just came off the meds, and I am doing herbal care and acupuncture now,” said Hofstetter.

    Neither Hofstetter nor Gleason recall being bitten by ticks. That is not unusual.

    According to Dr. Thomas L. Treadwell, an infectious disease specialist affiliated with MetroWest Medical Center in Framingham, only 30 percent of people diagnosed with Lyme disease in MetroWest recall tick bites.

    Unaware of the symptoms, some people live years infected with Borrelia burgdorferi, the bacterium transmitted to humans from deer ticks, causing Lyme disease.

    According to the Centers for Disease Control and Prevention, typical symptoms for Lyme include: fever, headache, fatigue, and a characteristic skin rash called erythema migrans. Most patients recover after a few weeks of oral antibiotics including doxycycline, amoxicillin, and cefuroxime axetil.

    Treadwell cautioned against long-term antibiotic treatments.

    “Throwing antibiotics (long term) at them is not the answer,” said Treadwell. “We need to do a better job of understanding why people don't get better.”

    Dr. Michael Newstein, affiliated with Milford Regional Medical Center says, “Antibiotics are wonderful medications, but there are risks to them.”

    Some of these risks include infection through IV lines and and susceptibility to antibiotic-resistant bacteria.

Organizations like the CDC and the Infectious Disease Society of America (IDSA) do not view Lyme disease as a long-term disease. Many long-term treatments past four weeks are considered experimental. These guidelines are usually set as the standard for insurance companies, to “Antibiotics always cause harm,” said Treadwell. “The fewer antibiotics we use, the better it will be for the patient.”

    Laura Walker, 60, of Wrentham, was diagnosed three years ago after finding a tick on her stomach. She spent $25,000 out-of-pocket to pay for her medication.

    “It has cost me a lot of money, and I have been afraid of going bankrupt trying to pay for a disease that no insurance company or medical establishment agree on how to treat,” said Walker.

    Walker s;aid most medical specialists are handling all Lyme disease cases with the same one-month antibiotic treatment - both early and chronic stages.

    “I am very disappointed with the medical community, and I can’t believe they are not doing enough to help patients,” said Walker.

    “People aren’t aware of what to do, or how to protect themselves,” said Sue Sullivan, 59, of Shrewsbury, who took antibiotics for three months in 2008. “You have to go out on your own and find your own treatments.”

    Instead of longer term antibiotic treatments, Newstein said there should be better support for chronic pain from Lyme disease. That would include pain, chronic pain and sleeping medications.

    “In my experience, the vast majority of those patients feel better with time, but the time varies with different patients,” said Newstein. “Longer antibiotic usage probably won’t help based on what we know about Lyme disease.”

    Amanda Blair, 35, of Marlborough, says she is constantly reminded of her experience with Lyme disease every time she looks in the mirror.

    “I woke up and asked my husband to bring me coffee, when I took my first sip, it dribbled all down my face,” said Blair of the incident two years ago. “My whole left side of my face was drooping.”

    Afraid she might have had a stroke, Blair went to her primary care physician and was diagnosed with Bell’s Palsy from Lyme disease - one of the rarer symptoms of the infection. She does not recall seeing any ticks, but she does remember seeing two bull's-eye rashes on her stomach. The hospital gave her a month-long treatment of the antibiotic doxycycline.

    “I was told that this is probably my new face,” said Blair this month. “So I am still trying to embrace it although it is really hard for me to look at pictures of myself with a slightly smaller eye and crooked smile.”

    During a public forum in Wayland last month,  Dr. Sam Telford, professor of infectious disease and global health at Tufts University School of Veterinary Medicine, outlined a grim future for the region dealing with disease-bearing ticks. Telford said the rise in the deer population is directly linked to the rise in Lyme cases. Unfortunately, many communities in MetroWest and the Milford area do not allow or have very limited areas for deer hunting. As the deer population continues to grow relatively uncontrolled, the chances of being bitten by an infected tick increase. Because of this elevated risk, experts tell those who venture into the woods, or even their leafy backyards to wear insect repellent containing DEET, consider spraying their yards with insecticides and wear long pants and long-sleeved shirts.
That warning has come too late for some.

    “It is a problem in this area, it’s so under researched, and I hope that it changes soon,” said Hofstetter.

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