Almanac Online : When Lyme disease becomes a nightmare

by Symptom Advice on May 26, 2012

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Uploaded: Thursday, May 3, 2012, 4:03 PM                                             Updated: Friday, May 4, 2012, 9:18 AM

When Lyme disease becomes a nightmare Locals tell of years of elusive diagnoses and painful symptoms

By Kate Daly Special to the Almanac Sherry Cagan of Portola Valley says she nearly died when she ended up in the emergency room with the systemic MRSA staph infection last year. after seeing “maybe 50 doctors” for a long list of symptoms that included hip pain, arm pain, numbness in the foot, fatigue, sleeplessness, brain fog, and decreased lung capacity, she finally received a diagnosis that had eluded her for seven years: Lyme disease. Kathleen O’Rourke of Woodside has her own story of living with Lyme disease for seven years. her symptoms have ranged from vertigo to dizziness, irritability, blurry vision, apnea, heart palpitations, joint pain, neuropathy in her feet, and tinnitus. Their friend, Bonnie Crater, doesn’t have Lyme, but says she grew alarmed when yet another mother in their circle, Laure Kastanis of Portola Valley, “was pretty sick” with the disease. Last fall Ms. Crater and a mutual friend, Gayle Collat, started meeting monthly with the three Lyme patients “to try to understand the disease better.” They have gone on to found the Bay Area Lyme Fund ( to help finance research and innovative therapies. They either serve on or advise the board along with Ms. Cagan’s husband, Laird, Wendy Adams, Stephen Marra and Kate Misskelley. Their new office is at 888 Portola Road, Suite A7, in Portola Valley. This is the time of year when the risk of getting infected is higher because ticks are more active when it’s cool and damp. Dr. Raphael Stricker, a Lyme expert in San Francisco who says he treats 2,000 patients from all over the Bay Area and beyond, predicts “it’s going to be a bad year” here due to the late rain. Dr. Stricker’s patients come from as far away as Australia and Europe. he says he thinks the number of Lyme cases is steadily increasing worldwide because animals are spreading the disease where it wasn’t before, and people are encroaching upon the animals’ territory. Lyme is caused by the bacteria Borrelia burgdorferi, which in California is transmitted by infected Western black-legged ticks that feed on gray squirrels, mice, dusky-footed woodrats, birds, lizards, deer, and sometimes humans. In many cases, tick bites can go undetected, because in the nymph state, ticks are as small as a poppy seed and hard to see. One telltale sign of Lyme is a bull’s-eye rash developing soon after a bite, but that only happens maybe 30 percent of the time, Dr. Stricker says. another early sign is flu-like symptoms. if caught within weeks of infection, the disease can be treated with antibiotics. a delay in treatment could lead to a more complicated form of chronic Lyme and even death, he says. according to the San Mateo County Health System, 3 to 5 percent of black-legged tick nymphs and adults test positive for the bacteria in the county, yet no cases have been reported of humans’ contracting Lyme in the county in 2010, 2011, or in 2012 to date. Dr. Stricker says San Mateo County is “typical of most counties in the state” where the numbers reflect an “under representation.” he estimates nine out of 10 cases of Lyme don’t meet the criteria set by the Centers for Disease Control and Prevention, and are therefore “thrown out” rather than reported. the CDC tracks Lyme in all 50 states and reported 126 confirmed cases and three probable cases in California in 2011. CDC’s website describes Lyme as “the most commonly reported vector-borne illness in the United States.” Ms. Cagan said she thinks thousands of people may be suffering from Lyme in the Bay Area. Many may be like her and not know whether they have Lyme because the disease can take months to manifest and tends to mimic other illnesses such as Bells palsy, chronic fatigue syndrome and fibromyalgia. Diagnosis can be tricky due to the nature of the disease. the bacteria enter the blood and burrow into tissue, attacking different parts of the body at different times, undermining the immune system, and inviting other opportunistic health issues to arise. there are several Lyme tests available, but none is considered 100 percent reliable, Dr. Stricker says. In Ms. Cagan’s case, she remembers working outside on the family’s property back in 2005 and a day or so later, finding a tiny tick embedded in her neck. Weeks later she landed in bed for 10 days with severe flu-like symptoms. she then developed pains and other problems that led her to consult dozens of doctors. “Before I was diagnosed with Lyme, I was told I had everything from MS to cancer,” and that she needed surgery, she says. Initially, she took oral antibiotics. after a relapse, she ended up on an IV. Since October she has been hooked up to it for five to six hours a day. she just recently started feeling better, she says, but still relies heavily on her husband to help care for their children. she calls him her “rock.” Now in her 50s, Ms. Cagan wants to put this “personal nightmare and family nightmare” behind her. “I pray to get my life back.” In Ms. O’Rourke’s case, she doesn’t recall being bitten by a tick in 2005, but remembers doing a lot of gardening at their home in the Woodside Glens, where the front yard was “a regular thoroughfare of deer.” she was in her 30s, yet felt sick, tired, achy, irritable, and tingly, “like my skin was going to explode.” she tested positive for Lyme as well as two other tick-borne diseases, babesiosis and ehrlichiosis. after three years of treatment she says, “things are so much better than they were.” her son, Louis Sheridan, developed his own symptoms at age 9, soon after the family moved near Skyline Boulevard several years ago. “He had a tick on his tummy that the dog brought in,” Ms. O’Rourke says. he was complaining that his feet felt like lead bricks. Doctors checked him for apnea and adenoid problems, and eventually diagnosed him with Lyme. after one and a half years of taking antibiotics, “he is completely great,” she says. after the family’s move, his little sister, Hannah, complained of ocular migraines, and she missed six weeks of school. she has shown sensitivity to black mold, but tested negative for Lyme. Based on her family and friends’ experiences, Ms. O’Rourke is concerned about the prevalence of Lyme in the area. “I worry about all the gardeners and stable hands who have no idea they’re coming in contact with it.” Steve Gray lives down the hill in Woodside, but traces his Lyme infection to Half Moon Bay. seven years ago his dogs came back from a walk there and must have picked up some “hitchhikers” because several days later he found a tick hiding in his belly button. two days later he was hospitalized with anaphylactic shock for a suspected food allergy that hasn’t troubled him since. Months went by and he started feeling tired and developed a limp. he had three blood tests done, but it wasn’t until IGeneX inc., a medical laboratory in Palo Alto, tested him that he was diagnosed with Lyme in 2008. he also tested positive for the co-infection, babesiois. “I’ve been feeling like I have MS, ALS, muscle spasms, and jerks,” mr. Gray says. he has turned to several infectious disease specialists including Dr. Steven Harris in Redwood City, who, he says, favors antibiotics and alternative approaches such as dietary changes. In his 60s, mr. Gray keeps physically fit, drinks quinine and filtered water, and now follows a diet free of gluten, sugar, dairy and red meat. despite all the clean living, he says, his health care costs have gone up to over $800 a month since his diagnosis. Funding research the Bay Area Lyme Fund is hoping to provide people like mr. Gray with help down the line. the group is funding research at Stanford to design a transdermal patch that could potentially kill off the bacteria. another resource for Lyme patients is the Mid Peninsula Lyme Disease Support Group. Facilitator Scott Forsgren says 15 to 20 people usually attend on the second Tuesday of every month from 6:30 to 8:30 p.m. in Room E at El Camino Hospital in Mountain View. Ms. Cagan went to one meeting and says after seeing people shaking in wheel chairs, and hearing stories about losing homes to pay for treatments, “I got in my car and I bawled.” she says some drugs can cost $10,000 a month, and aren’t approved by insurance companies because the generally accepted protocol for treating Lyme is a short course of antibiotics. her personal saga makes her determined to help spread the word about Lyme prevention. encourages people to avoid going where ticks like to hang out, in leaf-littered places, tall grasses, stumps and trunks. to prevent tick bites, the advice is to wear light-colored long sleeved shirts and pants that are tucked in and treated with pesticides. As an alternative, Theresa Brown of Woodside swears by the lightweight finely meshed insect protection clothing she bought online: a hooded sweatshirt and pants made by Bug Out. Frequent body checks are suggested in tick country. if a tick is attached the best way to remove it is to pull straight back with tweezers. Disinfect the bite area, and keep the tick in a moist plastic bag to send to a tick-testing lab as soon as possible. the county offers that service. MORE INFORMATION ■ the Bay Area Lyme Fund is funding a Stanford study of ticks found in Woodside and Portola Valley. Volunteers are needed to collect ticks on May 5 so they can be tested for infections. to sign up contact or call (650) 530-2439. ■ the group is sponsoring a fundraiser featuring polo, kids’ games and pony rides at a luncheon and auction on May 27 at Menlo Circus Club in Atherton.

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Posted by Judy Morley, a resident of the Menlo Park: Central Menlo Park neighborhood, on May 5, 2012 at 2:45 pm

Thanks for good reporting on Lyme disease. I was successfully treated for 3 years. This is the most accurate and comprehensive news article I’ve seen. Appreciate the good research.

Posted by resident, a resident of another community, on May 7, 2012 at 11:08 am

There are a lot more Lyme patients in the Bay Area than you would think from coverage, mostly because of doctors believing it’s an East Coast problem and not thinking it exists here. When people don’t get early diagnosis and fast treatment, it becomes a more serious problem. Controversies over late-stage treatment, enmeshed with various conflicts of interest, mean most patients keep their heads down and just get the treatment they need if they can. I’m surprised to see such a comprehensive report in a local paper. I have read that ticks in Santa Cruz county are infected at a higher rate, and some of the coinfections occur at an even higher rate than Lyme.

An award winning film about the disease was produced by a Palo Alto resident and was on the Oscar documentary short list last year.

Posted by Mari a., a resident of the Menlo Park: fair Oaks neighborhood, on May 11, 2012 at 10:11 pm

The article states: “There are several Lyme tests available, but none is considered 100 percent reliable.” I slept out in the open in the big Basin area about 6 years ago at Cutter Camp with the cub scouts and remember feeling a lick on my belly and scratching it off in the middle of the night. I then developed the telltale Lyme disease bull’s eye rash and went to get tested. the test had conflicting results so they could not tell weather I had Lyme disease. my doctor and i decided to treat it like Lyme disease and i took a series of strong antibiotics that made the skin on the backs of my hands very sensitive to sun. it was summer and i am outdoors much of the time. Although it was an uncomfortable experience i am very glad I took the antibiotic treatment. my philosophy with Lyme disease is: when it doubt go ahead and treat it!

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