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Area experts reach out to educate about Lyme disease

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T he tall grass this time of year means more than just getting ready to fire up the lawn mower; it also means getting the word out about the Lyme disease-carrying deer ticks out in increasing numbers that attach themselves to people and their pets as they pass through it.

With the month of May again declared “Lyme Disease Awareness Month” in Massachusetts, a panel of experts discussed Lyme symptoms, diagnoses and treatment options with an audience of about 60 people in the Forbes Library community room in Northampton last week.

This week, the public is invited to another Lyme education session, “Ticks, Lyme Disease, and your Family’s Health” set for Thursday at 7 p.m. at the Goshen Town Hall. Sponsored by Goshen Open Space Committee and Hilltown Land Trust, the presentation includes information about tick biology and identification, how ticks spread Lyme and other diseases, and how to protect your pets and family from infection.

At the Forbes forum, a central theme of the panel was disagreement among professionals regarding Lyme diagnosis, how to treat it, and whether a more difficult-to-treat chronic form exists.

Dr. Charles K. Brummer, a natural and alternative medical doctor specializing in chronic illness with a practice in Northampton said Lyme has been called “the great impersonator,” a moniker once reserved for tuberculosis. That can make diagnosis difficult

“Those of us who see Lyme know how devastating it is if it’s missed,” he said.

Diagnosis can be especially difficult given the dizzying array of symptoms — both physical and mental — reported by patients and the way in which those symptoms mimic other ailments.

“Initial symptoms are tremendously nonspecific,” said Brummer. Examples of symptoms include fever, aches and pains, headaches and other flu-like discomforts.

Diagnosis is rarely made easier by the oft-cited “bulls eye” rash characteristic of Lyme, according to Brummer. “The bulls-eye rash is very lucky to have because it makes the diagnosis,” said Brummer. “No other insect bite is going to give you that.”

Among the topics addressed by the panel was the different approaches of two professional medical groups.

The Infectious Disease Society and the International Lyme and Associated Diseases Society disagree on nearly everything from the length of time it takes a tick to transmit disease once it has latched on to treatment options after a bite.

“Any tick that’s on for 12 hours or more should be considered a potential transmitter,” said Brummer, who stands with the recommendations of the International Lyme and Associated Diseases Society, known as ILADS. That, he noted, counters the 24 to 36 hours claimed by the Infectious Disease Society, known as IDS.

Another disagreement is over whether a person should receive treatment after a tick bite even if there are no symptoms. Based on the data that 70 percent of ticks do not carry Lyme at any given time, the IDS does not recommend treatment for asymptomatic patients.

ILADS recommends treatment, reporting that only 20 to 30 percent of patients exhibit the rash, said Brummer, while IDS claims it appears in 70 to 80 percent of early-stage Lyme sufferers.

But the disagreement that “dwarfs all other controversies,” said Brummer, is the question: “Is there something called persistent or chronic Lyme disease?” Although the IDS says “no,” Brummer and ILADS disagree.

“I can’t think of any other infection we’d say that about, for example strep or pneumonia, in which antibiotics don’t work 100 percent of the time. With Lyme disease, for some reason we don’t do that,” he said. “There is no infectious disease that has 100 percent treatment success the first time.”

Brummer advocates treating the chronic form, whose symptoms often mirror arthritis, chronic fatigue and fibromyalgia, with more antibiotics over a longer period of time. Brummer also treats the earlier, nonchronic form of the disease more aggressively than most conventional practitioners to avoid allowing it to develop into a later, chronic condition.

He also recommends herbal, or naturopathic treatment, in conjunction with antiobiotic treatment, particularly for the chronic form of the disease: “You need a full life-style plan to go along with antibiotics,” he said.

And, he noted, ticks often carry other infections besides Lyme, calling the deer tick “the sewer of insects.”

“It’s hard to cure Lyme when another infection is in you,” he said.

Dr. Emily Maiella, a naturopath practicing in Montague, said many people with Lyme feel they haven’t been listened to.

“Your unique story will help the practitioner figure out what you need to get better,” she said. Maiella talked about the important role patients play in their own recovery. Likening human beings to a 50-gallon drum, she said: “You put in Snickers bars, you put in your divorce. They’re like little droplets. Add Lyme disease and that’s just enough to make it all spill out. So clean house!” she said, referring to managing diet, lifestyle and emotions.

Lydia Rackenberg, a social worker at the University of Massachusetts, talked about the difficulty in diagnosing late-stage Lyme, when symptoms can become neurological. She said patients often don’t link emotional problems to a long-forgotten and perhaps untreated tick bite.

“This is the tricky thing, that sometimes the early joint pain is gone and what you’ve got is a screaming psychiatric condition that doesn’t respond to treatment,” she said.

Like its physical symptoms, psychiatric symptoms associated with Lyme can be confused with other causes: depression, anxiety, erratic moods, insomnia, exhaustion, anorexia, panic disorder, inability to focus.

“The crazy thing about Lyme disease is that the symptoms come and go, so it can look like personality stuff, malingering,” said Rackenberg. “People will say, ‘What’s with this person? They can be sick on exam day but okay on volleyball day?’”

Given that medical providers and family members are sometimes dismissive of Lyme sufferers and their confusing array of symptoms, Rackenberg said a mental health provider plays an important role in educating family and friends and supporting the patient.

“Validating someone’s reality is one of the most important things I can do,” she said. “The notion there could be an underlying cause for this set of symptoms that has ruined their life is a ray of hope.”

Panelist Maria Malaguti contracted Lyme disease in 1997 and is currently working to open the Lyme Disease Resource Center in the fall in Northampton.

“The idea for the center was inspired by my own experience, my struggle for resources, support and understanding,” said Malaguti. The center will offer education, outreach, support groups, workshops, and consultation. Malaguti is now seeking volunteers and can be reached at (413) 588-7388.

Related

Tips to prevent Lyme disease

Friday, May 24, 2013

Dr. Charles Brummer offers several tips to prevent Lyme disease: Stay out of tick habitat (tall grasses, cool, moist places, the edge of fields); Wear light-colored long pants and shirts and tuck pant legs into socks; Use tick repellents such as Permathrim or Deet on clothing or Skin So Soft Plus on skin; Don’t sleep with pets: “They are real …

Questions and answers about Lyme disease 

Friday, May 24, 2013

At the Forbes Library talk, audience members were invited to ask questions of the panelists. Some of the questions and answers included: Q: Is it possible to get a rash that doesn’t do the bulls-eye thing? Brummer: There are a wide variety of rashes, or none at all. A speckly rash is common. Q: What does longterm antibiotic therapy do …

Legacy Comments2

Thank you to the presenters for taking the time to educate us, and to the Gazette for this informative article. It is much needed. Here are some other links that might be helpful. If you are bitten by a tick, you can preserve it in alcohol and have its DNA tested at U Mass for the bacteria. They test weekly: http://ag.umass.edu/services/tick-borne-disease-diagnostics (or google U Mass tick testing). If you have questions about the confusing and developing symptoms of Lyme Disease, you can read about them at The Columbia Medical School's webpages on Lyme Disease: http://www.columbia-lyme.org (or google Columbia Medical School Lyme Disease). If you work or spend time outdoors, there is a line of clothing (socks, light weight khaki pants, etc.) manufactured by Insect Shield, with permethrin, an effective deterrent against ticks. http://www.insectshield.com. The treatment lasts through many washes. DEET or Skin So Soft will still be necessary on exposed skin. To reduce the possibility of ticks in your yard, the following has been used effectively in Long Island and elsewhere. Mice, the primary carriers of the Lyme bacteria, love cotton balls, and if you soak the cotton balls in permethrin, they will come in the night and take them to line their nests. The permethrin kills immature ticks on the mice, but is said not to harm the mice. Damminix tubes are available at Amazon and elsewhere online. You can find out much more about ticks here: http://www.ticktubes.com/downloads/deertickmanual.pdfI Here is a recent article about the Lyme Vaccine: http://www.historyofvaccines.org/content/articles/history-lyme-disease-vaccine

Permethrin is highly toxic to cats, so your advice to soak cotton balls in this for mice - shouldn't this only be done in households without children and pets? It is also highly toxic to bees and has been suggested that this is one of the chemicals that is causing them to die.

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