A Threat in a Grassy Stroll: Lyme Disease By JANE E. BRODY
Published: July 15, 2008 My friend Anne and her husband, Richard, spend summers at a resort in Westchester County that has a swimming lake, tennis courts, gardens and beautiful grounds surrounded by woods. But Anne never sets foot on the grass. The reason is Lyme disease. Anne says just about everyone she knows who partakes of the greenery and gardens outside the cabins has contracted the disease. So not only is she cautious about venturing out, but she and her husband also check each other daily from head to toe for the much-feared deer tick, which can transmit the disease when it attaches to skin and feeds on blood.
This tick, which is the size of a pinhead when it starts searching for a bloody meal, is responsible for about 20,000 reported cases of Lyme disease each year in the United States (the actual number is believed to be 10 times that) and 60,000 reported cases in Europe. Cases have been reported in every state, with residents of the Northeast, the Great Lakes region, northwestern Washington and parts of California the most frequent victims.
In some areas, as many as half of the deer ticks are infected with Borrelia, the Lyme disease bacteria. The disease got its name in 1975 from the first identified cluster of cases, among children in Lyme, Conn., who had rheumatoid-like symptoms of swollen, painful joints.
The white-tailed deer and white-footed mouse are the tick's most frequent hosts, but it also feeds on birds, dogs and other rodents, including squirrels. The tiny nymphal form that emerges in spring and early summer presents the greatest hazard to humans. It is also the hardest to spot, especially on body parts covered with hair.
People usually acquire the tick while walking through grassy or wooded areas. Sometimes pet dogs are the source: in Minnesota one summer, our dog got more than 30 deer ticks on his face, apparently from sticking his nose into a fresh carcass. Unlike the common dog tick, which is round and very dark, the deer tick is elongated and brownish.
A Challenging Diagnosis The disease can be maddeningly difficult to diagnose. Only 50 to 70 percent of patients recall being bitten by a tick. Ordinary laboratory tests are rarely helpful. Tests for antibodies to the bacterium or for its genetic footprints result in many false-negative and false-positive findings.
Rather, according to Dr. Robert L. Bratton and colleagues at the Mayo Clinic in Scottsdale, Ariz., who reviewed the recent literature on Lyme disease in the May issue of Mayo Clinic Proceedings, most cases are best diagnosed and treated based on patients' symptoms. Thus, doctors everywhere must be alert when dealing with patients who live or travel in areas where Lyme disease is prevalent, and they must be willing to use appropriate antibiotics based on a clinical assessment rather than laboratory findings.
Since signs and symptoms vary and often do not appear until one to four weeks -- or even months -- after exposure, anyone bitten by a deer tick may be wise to obtain preventive treatment with an antibiotic, according to Lyme disease experts consulted by Constance A. Bean, the author with Dr. Lesley Ann Fein of the new book "Beating Lyme" (Amacom Books).
The most common sign is a reddish rash called erythema migrans that often resembles a spreading bull's-eye, though up to 20 percent of patients never develop it. Common sites of the rash are the thigh, groin, buttock and underarm. It may be accompanied by flulike symptoms: fever, chills, body aches, headache and fatigue.
If untreated or inadequately treated, the infection can cause severe migrating joint pain and swelling, most often in the knees, weeks or months later. In addition, several weeks, months or even years after an untreated infection, the bacterium can cause meningitis, temporary facial paralysis, numbness or weakness of the arms and legs, memory and concentration difficulties and changes in mood, personality or sleep habits. Some untreated patients develop temporary heart rhythm abnormalities, eye inflammation or hepatitis.
Controversial Guidelines Antibiotics for early Lyme disease should be taken for at least two to three weeks. The treatments recommended by the Infectious Diseases Society of America include doxycycline for nonpregnant patients and children 9 and older, or amoxicillin for pregnant women and younger children. Other options include cefuroxime axetil (Ceftin) and erythromycin.
But these guidelines are controversial. They have been challenged by a nonprofit medical group, the International Lyme and Associated Diseases Society, which says they are inadequate to combat the infection in a significant number of patients, who go on to develop debilitating chronic symptoms. In May, the Infectious Diseases Society agreed to review its guidelines as a result of an antitrust lawsuit by the Connecticut attorney general, Richard Blumenthal, who said some of the society's experts had financial interests that could bias their judgment. (The society denied that accusation.)
Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than "official" diagnostic and treatment guidelines suggest. Pamela Weintraub, a senior editor at Discover magazine, has produced a thoroughly researched and well-written account of the disease's controversial history in her new book "Cure Unknown: Inside the Lyme Epidemic" (St. Martin's Press).
Treatment and Prevention The Mayo doctors concluded that patients who developed arthritis related to Lyme disease should be treated for one to two months and that those with late or severe disease, including neurological and cardiac symptoms, required intravenous antibiotics. Although two studies, neither of which was long-term, found that repeated antibiotic treatment did not reverse the pain and altered cognition associated with Lyme disease, the experience of thousands of patients, including Ms. Bean, contradict these findings.
There are no vaccines to prevent Lyme disease; an early attempt was taken off the market in 2002 because of side effects and limited effectiveness. Those who will not or cannot avoid grassy and wooded areas should wear long sleeves and long pants with legs tucked into socks, and spray exposed skin and clothing with tick repellent containing 20 to 30 percent DEET. Repellents should not be used on children under 2.
Since the tick must usually feed for 24 hours to transmit significant amounts of bacteria, daily body checks and showering with a washcloth can help prevent infection. Clothing should be washed and dried in a dryer. Additional preventive actions are described in "Beating Lyme."
If a tick is attached to skin, it should be removed with tweezers, not fingers. Press into the skin, grasp the front of the tick's head and pull at right angles to the skin. Place the tick in a sealed plastic bag for later identification. Then wash the area and your hands thoroughly.
They now have out their DVDs that are available to buy at above site, of this 104 minute Lyme documentary covering almost every aspect of Lyme from:
being bitten; finding a LL MD, lyme literate MD; getting necessary blood tests performed by reliable LYME DIAGNOSTIC LABS in USA vs. the norm!
The lyme WAR controversy: ILADS, who are our LLMDS; vs. IDSA, infectious drs., who will not treat us long enough and with strong enough antibiotics to get us into remission.
The health insurance companies REFUSING to reimburse us for our lyme appointments, treatments, meds, testings.
They have sided with CDC on using IDSA' 06 lyme treatment guidelines, which are NOT to be used for determining lyme and/or co-infections the tick may be carrying too and did NOT involve any of our chronic LLMDS in their panel decisionmaking!!
Also, it talks about Conn. AG Dick Blumenthal's 5-1-08 ruling on his anti-fraud 20 month investigation of IDSA!
They were found wrong of many things: conflicts of interest where they receive grant money, involved in patients, and sitting on 2 committees writing the SAME LANGUAGE against treating long-term antibiotics for chronic lyme patients, etc.
I encourage EVERY reader to go to the above site, and watch this touching 5 minute trailer of UNDER OUR SKIN! You will need a kleenex as you watch it!
Again, thank you for getting the word out about how easy it is for ticks to bite you, and your being unaware of them since they are so TINY!
Betty G, IOWA lyme activist
-------------------- info purposes; NOT CONSIDERED MEDICAL ADVICE! Info provided should not be used replacing your personal MD's advice. Site links are provided for EASY RESEARCH. Site Info is the opinion of those who publish the sites; not necessarily that of BettyG
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bettyg Frequent Contributor Member # 6147
posted 15-07-2008 02:27 AM -------------------------------------------------------------------------------- jeannine and any member reading this,
on my new computer ms word 07, i can't find WORD COUNT; something was updated lately, and since then i can NOT find that feature.
could you do a word county for me from....
jane, until i sign off, bettyg, iowa lyme activist.... **********************
150 IS THE LIMIT!! **************** Jeannine please add that to yours so other letter writers will know before NYT send their auto reply back!
i want to try to reduce to 150 and RESUBMIT with their auto reply!! big thanks and night... **************************
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Hi Betty, I don't know how to do a word count with my computer - I'm just proud I know how to do an email.
But , I did a quick count the other night by just counting the number of words in a couple of lines and then multiplying by the number of lines. I got over 300 words that way. Not a very accurate way to count, but the best I could do.
It's an excellent letter, so you might want to divide it into two letters and send it. Ellen
up for my lyme patients to reply to this GOOD ARTICLE!!
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we don't usually get this good of coverage, please email a thank you and any other comments to LETTER TO EDITOR link shown above!! thanks all; maybe they might have a whole page of LYME LETTERS ... WE CAN WISH; CAN'T WE!
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What about fleas and mosquitos that carry the disease?
If we want to make any progress here, we need to stop calling Lyme a tickborne disease and stop perpetuating the myth that everyone with Lyme missed that tick hidden in their groin or other hairy areas of their bodies.
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