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Mountain View resident Debbie Nelson has been hitting the trails at Rancho San Antonio every week, taking on the steep inclines along the PG&E trail with trekking poles in-hand. It takes her about three hours to wrap up the 8-mile hike, but it’s small potatoes compared her upcoming two-week pilgrimage through 155 miles of coastal and rural Portugal later this month.
Nelson says she’s embarking on the journey from the city of Porto to Santiago de Compostela in Spain — part of the lengthy pilgrimage route known as the Camino Portugues — in hopes of raising funds to fight Lyme disease here in the Bay Area. Though the tick-borne disease is a common infection on the East Coast, she said it’s been an uphill battle to raise awareness that Lyme disease is alive and well on the West Coast.
Compounding the lack of awareness, doctors have poor methods for diagnosing the disease in its early stages, with detection rates well below 50 percent in the first few weeks, and treatment for the debilitating long-term effects of the disease can be largely ineffective.
Nelson was motivated to kick off her fund-raising campaign this year after her cousin, Jane, died in December following a 20-year battle with Lyme disease. She said Jane didn’t see the tick on her, and didn’t have the tell-tale “bullseye” rash on her skin that can signal someone has been bitten. When symptoms began to arise, she was misdiagnosed for years before finding out she had the disease, Nelson said. By the end, her cousin had difficulty going anywhere, and was suffering arthritic pain and severe skin pain that made it feel “like her skin was on fire.”
“She had four children and she didn’t get to watch them grow up,” Nelson said. “She was pretty much housebound.”
The confluence of factors that led to her cousin’s late diagnosis and eventual death are not unusual, according to Linda Giampa, executive director of the Bay Area Lyme Foundation. Doctors use a standard “two-tier” blood test for the disease, and the accuracy is close to about 50 percent for each. This leads to plenty of false negatives, making it easy for Lyme disease to progress beyond its early flu-like symptoms.
“A coin flip is about the best you can do,” she said.
Giampa said she and a group of mothers in Portola Valley decided to create the foundation five years ago to raise awareness of Lyme disease’s presence on the West Coast, and that both patients and doctors should be aware of the signs and symptoms associated with the disease. Maps of infection rates, released by the Centers for Disease Control and Prevention (CDC), show that most cases are clustered along northeastern states like New York and Maine, but a recent 2014 study shows that a small percentage of western blacklegged ticks — collected in various open space locales in Santa Clara and San Mateo counties — carry the bacterial strains known to cause Lyme disease.
The study got a whole lot of press at the time, she said, because there’s been a stubborn slowness among doctors to catch up with the fact that Lyme disease is present in the Bay Area and they need to keep a look out for it — particularly because treating Lyme disease in its early phases with antibiotics is essential to avoiding the grim symptoms associated with later stages of the disease.
“Some doctors say the (patient) is fine because there’s no Lyme disease in the Bay Area, and suddenly they’re dealing with brain fog, fatigue and arthritic-type reactions in their joints,” she said. “And the problem is there’s no treatment that is agreed on by the medical community to treat (late-stage) Lyme disease.”
Although it’s good news that California’s lengthy drought is over, the wet weather over the last year has been a boon for the local tick population. Ticks love the moist weather and enjoy hiding under wet leaves and debris, Giampa said, and it’s no surprise that the change in weather has led to more reported tick bites and a big increase in calls to the foundation.
Along with pouring millions of dollars into Lyme disease research at several universities, including Stanford, the foundation has been working with both small local clinics and large regional medical organizations like the University of California at San Francisco (UCSF) to ensure doctors are familiar with the signs of Lyme disease and know to ask the right questions — like whether the patient has recently hiked along the Peninsula’s open space preserves. But getting local doctors to be cognizant of the disease, particularly at Stanford Health Care, has been the “most frustrating” part of the foundation’s work, Giampa said. Primary care doctors simply don’t look for the disease unless you push them.
Requests for a response from Stanford Hospital went unanswered as of the Voice’s press deadline on Wednesday.
Nelson, who announced her pilgrimage as a way to raise funds for the foundation last month, said it’s a frustrating situation because there’s still not a lot of research on the disease, the symptoms aren’t always readily apparently and the unreliable, multi-step diagnosis can get pretty expensive. But early detection is paramount is keeping the disease from progressing, putting doctors in a bind, she said.
Giampa described the foundation’s education and outreach campaign as just as important as the research, and that they’ve trained outdoor educators to teach more than 200,000 Bay Area children about ticks and Lyme disease prevention — piggy-backing on the required outdoor curriculum in sixth and seventh grade. Slowly and steadily, she said, the foundation is changing the way Bay Area residents and doctors alike think about Lyme disease.
“We just need to chip away at it more and more, until it’s mainstream, that Lyme is here, and if someone comes in with a rash and has been hiking, for doctors to ask the questions and think about Lyme,” she said.
Information about the Bay Area Lyme Foundation is at bayarealyme.org. Anyone interested in Nelson’s fundraiser can go to her Gofundme page at tinyurl.com/y78skdd6.
When I adopted a beautiful 4 year old Border Collie from South Bay Purebred Rescue in 2012, we had no thought of him having Lyme’s disease. When he was first routinely tested for heart worm, as is normal once per year in order to begin the preventative for heart worm, he was negative. The next year the heartworm test included three other tests, one of which was Lyme’s. He came up positive, with a very high bacterial count. Ever since I first adopted him he had had periods of anorexia, also whining a little and lying on the floor not wanting to be touched. Tested at the Adobe Animal Hospital he was found to have arthritis in his hip and the technician commented how odd it was that the dog’s other hip was the one that seemed to hurt him. This was before the new 4-way heart worm test came out. So later when he was positive on the Lyme’s test and the ELISA test to determine how much bacteria there was showed it was very high, we were able to treat him with Doxycycline mono or hyclate. The expensive drug knocks down most of the bacteria but not all of it. About once per year he continued to have an episode and was treated and tested and each year the bacteria was knocked way down to a lower level, finally reaching a safer level around 30 instead of the original 235 or so. Now he goes much longer periods without attacks and is a healthy looking 9 years of age. However, it was the devil trying to convince vets who had not seen the test results that he had Lyme’s because, “It doesn’t exist in this area.” Since then at least one other case I know of has been diagnosed in Mountain View from a dog walked just once somewhere in the hills around here, or so I heard. My point being we must be our dog’s advocate and research and insist on testing and treating and sticking with it. I for one will not walk my dog in the creek bed or in the forests between here and the Ocean. Also I feel that tick repellants are worth the possible health risks of chemicals if dogs are possibly being exposed, because this disease is a life changer, and pitiful to see the struggle an ill dog faces.
Thanks for this very helpful and informative article!
It is clear that it is possible to contract Lyme disease in both California and the Bay Area. But it also important to understand that the risk is much lower than in Northeastern states. On average in Northern California as a whole, most seasons tested show that about 1-2% of adult Ixodes pacificus ticks (who don’t usually feed on himans) and about 2-15% of nymphal ticks (who DO feed on humans and dogs) are infected with Borrelia burgdorferi, the causative agent for Lyme Disease. Which means that at least 85% of the time in Northern California, a tick bite will not result in Lyme Disease. Caveat: Lyme is definitely possible in Northern CA – the 1st confirmed case was in 1978. So physicians should definitely be aware of the possibility of infection, the symptoms, and the approved therapies, and I strongly support the education efforts. Note that the highest prevalence of both Borrelia burgdorferi positive nymphs and adult ticks, as well as clinical cases of Lyme, in CA from 2005 to 2014 were in Trinity (4.5 cases/100,000), Humboldt (3.9), Mendocino (3.9), Sierra (3.2), and Nevada counties (2.7/100,000). Overall in California the incidence of Lyme disease was 0.2/100,000.
The only ticks to be worried about are mostly hard tick (Ixodes pacificus) nymphs and adult females. And mostly the nymphs. The good news is that this species does not usually ascend grasses, so one is very unlikely to be bit in an open field or grass land. Also, their preferred host 90% of the time is lizards, as opposed to birds or mammals. However, they are most accessible and plentiful in dense woods like oak, Douglas fir and Pacific Madrone, especially in areas carpeted with fir needles and leaf litter, and on branches, logs, and the base of trunks. So any activity that puts one in direct contact with shed leaves, fir needles, or wood, such as gardening, picnicking, sitting on logs or against tree trunks or gathering firewood or tree cutting can expose you to an Ixodes tick and potential (<15% of the time) Lyme disease.
Thanks for the medical statistics, David. But note what some context can do: Walking briefly in relatives’ rural shaded land, in one of the high-prevalence northern counties named in the comment above, I brushed off roughly 40 ticks from my pants legs — just from the occasional long pale grass blade in the dirt road, I wasn’t even walking in meadows or “grass.” (At the time, I didn’t expect such numbers, but was dressed for it — light-colored pants, no exposed skin — so the ticks were both obvious and easily removed.) A closer look at random grass leaves in the road showed that some blades harbored many ticks, waiting to hitch on the next passing mammal.
Also, they prefer shade — I see them far less often on leaves exposed to sun.
40 ticks from a brief stroll is the kind of multiplier that renders statistics like “only” <15% chance of an infected tick less reassuring. (A neighbor of the relatives there was crippled by long-term Lyme effects — reminiscent of another long-term spirochete disease, tertiary syphilis.)
Returning to the Bay Area from another such visit, I became ill and “presented” with acute but general symptoms. After I mentioned where I’d been, the physician promptly ordered a Lyme serology among the tests (though the problem turned out to be foodborne illness). That was 20-odd years ago in Santa Clara County, so at least at that time, the local medical community seemed aware of the disease.
I think David’s comments are germane. However, one needs to realize that in CA Lyme and other tick borne diseases can be contracted YEAR ROUND. This is very different from other endemic areas (Midwest or Northeast), where there is a focal season from May-early November. Show up with a fever in spring/summer, and you are more likely to be assessed for Lyme.
In California, the cold and flu season overlap with Lyme season. In 2014, 1/3 of Lyme cases (which required a rash) reported to CA health authorities between October and April (not everyone gets the rash though). So imagine a Lyme patient, presents to doctor with flu like symptoms in December, but then gets a false negative test. You can see why the diagnosis would be missed often.
Another thing to remember – the Lyme-causing bacteria in CA is far far more diverse than on the east coast. This is because the reservoirs (like mice, rats, squirrels and voles) are far more diverse. Bacterial diversity can mean immune response diversity, and that means different symptoms and potentially different antibodies than show up on the test.
Lyme can be very hetergeneous, although that is not often presented in the literature. I have found that doctors that train on the East Coast are far more knowledgeable about the disease than those that trained at Stanford or UCSF. West Coast trained doctors may have seen Lyme, but only a few cases – or they’ve seen them but haven’t known that those patients have Lyme.
The vaccine for humans that was tested and later approved by the FDA is record time, led to chronic inflammatory conditions, neurological conditions and even death. That is why it was removed from the market. The poor accuracy of lyme testing available in standard commercial labs often leads to a false negative. A patient who has lyme yet tests negative, gets the vaccine thinking that he has dodged a bullet. He then begins to develop lyme like symptoms, inflammatory conditions, and neurological symptoms that are a result of the vaccine being administered in a patient with active lyme disease.
It was not benign. It was tragic. The vaccine was rapidly removed from the market by the FDA and will not return in the same form by any means. Until testing is very much more reliable a vaccine most likely will not exist for humans.
Ten years ago in Los Altos I was walking my three month old golden for the first time. She had just completed her first round of vaccinations and could finally go out in the neighborhood for a romp. Two blocks from home she played with my neighbor’s little dog for a while. I sat on their front sidewalk, not in the grass, while they played. The next day I had a huge bull’s eye rash on the inside of my left thigh. I had recently been declared lyme free for the first time in ten years. Yes, lyme is in Los Altos. This was a blow.
Realizing that dogs often do not get diagnosed with lyme until it’s too late, I took my little fur ball to our vet for testing. He was very aware of lyme and other tick borne diseases in our area. She tested positive within two days of the bite.
She was treated with doxycycline for two months and is fine today, 14 years later. I, on the other hand, am sick still, testing positive on WesternBlot with ever changing outer cell proteins detected, indicating ongoing infection. Positive on both IgG and IgM panels.
My dog does get the vaccine for dogs and I am deeply grateful for it! Managing chronic lyme over the years would have been miserable without my faithful and marvelous dog by my side.
As to a human vaccine, heck, lets get a reliable test for active lyme infection first! That shouldn’t be such a challenge after all of these years, yet it is. To me that indicates two things. One, that the lyme bacterium is a remarkable little bug that can change outer cell proteins at will as well as curl up into a cystic form when overwhelmed by the immune system and medications, ready to emerge when the environment is more appealing. Two, that there is not sufficient desire at several levels to develop a more accurate testing method. After all, treating all of the people that have undetected lyme due to lousy testing and doctors that don’t recognize it as a real threat in their communities would cost untold sums. Insurance companies certainly don’t want to pay for all of those patients’ necessary treatments. I’ve read that to treat all the folks that actually have lyme could bankrupt the insurance industry as well as Medicaid and Medicare.
There is a lot more going on here than a bad test. There is a genuine lack of will to support lyme patients and lyme physicians. The lyme mindset in the infectious disease community is entirely too political and not at all sufficiently compassionate.
@A lyme friend
Your description of the lyme vaccine’s removal from the market is entirely wrong.
1) There were a few *unsubstantiated* reports of the vaccine leading to arthritis.
2) This was studied for several years and incidence of any side effects was indistinguishable from background . This means anyone who developed arthritis after getting the vaccine would have developed it after getting it.
3) The multi-year observational study, having observed no arthritis cases, also observed no deaths. No one died from it.
4) Some genetic evidence and one study showed some limited potential for autoimmunity in individuals possessing one particular gene variant, but no evidence for risk in others.
5) The FDA, after weighing all evidence, found benefits of the vaccine to outweigh the risks. The FDA did not pull the vaccine.
6) Ongoing media coverage and anti-vaccine hysteria caused sales of the lyme vaccine to plummet, and the manufacturer withdrew it from the market on their own.
Source:
NIGROVIC, L. E., and K. M. THOMPSON. “The Lyme Vaccine: A Cautionary Tale.” Epidemiology and Infection 135.1 (2007): 1–8. PMC. Web. 17 Aug. 2017.
I contracted Lyme disease back in 2008 while living in Mountain View. Can’t be sure, but probably picked up a tick walking the dogs in Los Altos. In an odd coincidence, I was camping in CT a few weeks later and woke up with Bells Palsy. I mistook it for a stroke and the nearest emergency room was in Old Lyme CT, where they guessed it was Lyme disease and followed up with a blood test. I never saw the tick bite, but I did feel very tired the weekend before leaving for CT. Although Bells Palsy is no fun, I’m glad it showed up or I would never had known about the Lyme disease.
Best thing for city and country folks is to stay inside and never go outside. Just have safeway deliver your food and work from home if you can. Never go into wooded areas and or tall grassy knolls. If you do have to go outside, always wear a white body suit like they use when working with bees. Remember with Bing you can see the outside world from home.
Cheeers
My son just got bite last week and had a bad spreading rash. Kaiser doctors are also blind to Lyme disease here in the bay area. One doctor said after showing him the original bite “if we were in New England I’d say its Lyme disease” same bite, wrong state so it cant be…. he was treated with antibiotics 5 days after the bite and the rash stopped spreading and going away from the original bite spot. He will have the blood test done in a month just to prove its so and here in Santa Clara county.
Tammy, good luck with your son. But from what I read in your comment above, it looks like you are concerned about Lyme disease but do not have any specific evidence for it, and are awaiting the Lyme serology you mentioned, which would clarify things.
It is very important to keep aware that many other insect bites, including spider bites, can produce skin rashes and even the identical “bulls-eye” concentric rash characteristic of Lyme-infected ticks. Journalism has popularized awareness of those skin rashes in Lyme-disease cases, but has failed to also get the word out that the rash itself is very, very far from conclusive evidence of Lyme infection. Even in a region like rural northern California with significant presence of Lyme-infected ticks, a bulls-eye rash is NOT specific evidence for Lyme disease — rather it is a warning to check further for that possibility. Kaiser doctors will be aware of this ambiguity.
I lived in the northeast for a long time, about 50 miles from Lyme, CT after which the disease is named, so lyme disease was just a fact of life in the warm seasons. In the 1990’s, there were lyme vaccine drug trials in the area, but anti-vaccine hysteria killed that vaccine.
I really hope that people come to their senses and try to bring this vaccine to market, because we can immunize ourselves against lyme disease like we can against polio and smallpox. You can get the lyme vaccine for your pets, just not for yourself.