Wednesday, June 4, 2014
Twenty years ago, a gentleman and his dog were driving east on I-84 toward Hood River. The rest area just before Hood River looked like a perfect place to stop for a walk. He says, “My dog and I were infected at the highway rest area in Hood River. We both got the distinctive rash, but I did not know what it meant. I had to put him down when he could no longer walk.
"I was six years undiagnosed and very sick because my HMO at the time would not properly diagnose and treat Lyme disease because of the potential expense. I had to leave the health plan and went to a specialist in California for diagnosis and treatment. It took four years of antibiotic treatment to start feeling normal again.”
Ticks are in Oregon. Ticks with Lyme disease are in Oregon, too. Just ask any veterinarian who lives here. They’re hungry for blood meals and are happy to bite humans as well as your pets and other animals.
Why do northern California and Washington report more cases of Lyme disease than Oregon, even though Oregon sits between California and Washington with similar climate and topography? Why do patients need to go out of state to get treatment? The answer is simple: Politics.
The Oregon Board of Medical Examiners is very vocal and active against evidence of prevalence of Lyme disease in Oregon, and it denies the existence of chronic Lyme. The Board also appears to actively target physicians who treat Lyme patients.
As a consequence, there do not appear to be any Lyme-literate doctors in Oregon (i.e., an MD who will actually treat a person for Lyme disease for more than a few weeks). Patients who are aware of their situation either rely on naturopathic physicians in this state, or they go out of state (mostly California and Washington), or they attempt to self-treat.
The science on Lyme disease is known to be inadequate. Testing is imprecise, and the scientific understanding of how the disease-causing organism (Borrelia burgdorferi) behaves in the human body is incomplete. Because of this lack of understanding, there are two “standards of care” for Lyme disease in the United States.
The first, promulgated by the Infections Disease Society of America, generally applies strict diagnostic and treatment criteria, focuses on early stage or “acute” Lyme disease, and does not acknowledge the possibility of persistent infection or the need for long-term treatment.
The second set of guidelines, promulgated by the International Lyme and Associated Diseases Society, emphasizes clinical diagnosis using the doctor’s best clinical judgment (i.e., since the available laboratory tests for Lyme disease are so poor), and recognizes the possibility of persistent infection which can require long-term treatment.
Oregon officially follows the first set of guidelines (the strict guidelines from IDSA), although in practice Oregon is even more restrictive. Oregon also has the distinction of being the first state to harass a physician for prescribing antibiotics for longer than these guidelines dictate (two to four weeks), which only apply to early stage or acute Lyme disease.
Late-stage Lyme disease is another matter entirely, which is not addressed in these guidelines at all. Nevertheless, if an MD in Oregon attempts to treat a patient for late-stage Lyme disease, in accordance with his or her ethical principles and the guidelines promulgated by ILADS, he or she faces harassment and possible loss of his or her license to practice.
According to the guidelines followed in Oregon, in order for your physician to diagnose and report Lyme disease, you must have:
n Physician-observed erythema migrans (EM), or bulls-eye, rash;
n Positive test results in two-tiered serological (blood) testing
This is based on an intentionally narrow case definition for Lyme disease used by the CDC for surveillance purposes (i.e., tracking the spread of disease), and the CDC specifically states that these criteria are not to be used for diagnosis in individual cases (because if you apply these strict criteria, you will miss a lot of patients with Lyme, and they will get sick). Nevertheless, these are the guidelines Oregon doctors will try to apply for diagnosis.
If you never get a rash, you will never be diagnosed with Lyme disease in Oregon. If you get a rash but the physician does not see it, you will never be diagnosed with Lyme disease in Oregon (even if you tell the doctor about it). In reality, at most only 40-50 percent of patients with Lyme disease ever got a rash.
In relation to the two-tiered serologic (blood) testing, your doctor will give you a first test to check for Lyme disease, and then (if you are positive), give you a second test to confirm the diagnosis. Both tests look for antibodies in your blood.
But the prescribed blood tests will not work immediately following a tick bite (because your body is not yet making antibodies to the infection), and even if you were making antibodies, the two-tiered protocol would only make sense if both tests are sensitive (i.e., they can each correctly identify a patient with Lyme), but not very specific (so they could each give a false positive).
In this case, the two-tiered protocol would eliminate some “false positives.” But here’s the catch: The Tier #1 test, ELISA, is not very sensitive. It will only catch about 40 percent of the people who are sick, even when correctly administered. Because of this, many people get false negatives and never proceed to the second test, the Western Blot.
The Western Blot is more sensitive than the ELISA (about 95 percent), but still not perfect.
The combination of screening based on an EM rash, which occurs in less than half the patients, followed by two-tiered blood testing, which is effective in less than half of the cases, means that in the best of circumstances, even if there were no political controversy or bureaucratic pressure against diagnosis, three-quarters of the people with Lyme disease would never be diagnosed in Oregon.
Sadly, there is political controversy and bureaucratic pressure against diagnosis. Doctors here in Oregon can’t even report a Lyme case to the health department unless they follow the strict guidelines mentioned above. Because the number of reported cases is low, it is possible for bureaucrats to say “Lyme isn’t here in Oregon.” So there is no incentive to look more closely at rates of infection, allocate funds for surveillance, or consider modifications to the guidelines.
But Lyme exists in Oregon.
In the 2013 Census, the population of Hood River was 7,167. In Hood River alone, patient advocacy and support groups are aware of well over 100 patients suffering with chronic Lyme disease. This is over 1 percent of the population here in Hood River.
While it is possible that some small fraction of these patients may not have Lyme disease, it is important to recognize that not a single one of these patients ever received a positive diagnosis from an MD in Oregon, and many report that local doctors will flatly refuse to give a positive diagnosis for the disease, even if the patient can provide positive blood tests and exhibits extreme clinical symptoms.
Instead, they will refer a patient to a local advocacy group for self-help, or an out-of-state physician, or (in the worst of cases) give an incorrect diagnosis that leads to years of steadily worsening health and unnecessary expense.
The Southern Oregon Lyme Disease group hosted a seminar last month at the Oregon Bureau of Land Management in Salem. Out of an audience of less than 50 people, several audience members, including employees from the Forest Service, spoke about recent or chronic infection. Lyme exists in Oregon!
Luckily, the naturopathic community here in Oregon is more aware of the prevalence of the disease, and does not operate under the same bureaucratic pressures as the MDs, so it is still possible to get reasonable care here in Hood River (and Oregon), if you know where to look, and if your insurance company will cover the expense.
What are the goals for us with Lyme in the state of Oregon?
n Better testing and reporting, so we can have more realistic understanding of the actual number of Lyme disease cases. Ideally, regulations would be modified to highlight the need for clinical diagnosis (i.e., using the doctor’s best medical judgment), eliminate the ELISA (Tier #1) as a “gateway test” prior to Western Blot, and require reporting of CDC positive Western Blot results from CLIA-certified labs;
n Educating the general public: More education to help people avoid getting sick, help more people understand why they are sick, and help more people find available resources for support and treatment;
n Educating health care professionals so that they can provide better care;
n Flexibility on standard of care. Allowing Oregon patients and physicians to have the option of using a standard of care with informed consent that is most appropriate for each individual patient without any concern of repercussions from the Oregon Medical Board;
n Insurance coverage. Making insurance company reimbursements for Lyme treatment available for all Oregon patients.
For a more scientific read on Lyme infection tests, go to treatlyme.net. Click “The Treat Lyme Book Online.”
For more information about Lyme disease in Oregon:
Oregon Lyme Disease Network, Theresa Denham, president and founder, 541-312-3081; junipermeadow.com/lyme
Resources in Hood River:
Mid-Columbia Lyme Disease Group, Elaine Walker, 541-490-4019
Joan Laurance, N.D., 541-386-4844
Mary Jane Heppe, a Lyme educator, advocate and health coach, lives in Hood River. Part 1 of her Lyme commentary ran in the May edition of Hood River News’ Healthy Hood River.
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Parkdale third graders sing "12 Disaster Days of Christmas"
Welcome to your sing-able Christmas gift list. What follows is an emergency rendition of “12 Days of Christmas” – for outfitting your home or car in case of snow storm, earthquake, flood or other emergency. Read it as a simple list, or sing it to the tune of “12 Days” – you know, as in “ … and a partridge in a pear tree…” Not to make light of it, but the song is a familiar framework for a set of gift ideas that you could consider gathering together, even if the recipient already owns items such as a bunch of coats, tire chains and flashlights. Stores throughout the Gorge are stocked up on all these items. Buying all 12 days might be prohibitive, but here are three ideas for checking any of the dozen off your list (notations follow, 1-12.) The gift items needed to stay warm, dry and safe are also coded to suggest items in your abode (A) in your car (C) or both (B). 12 Gallons of Water (A) 11 Family meals (B) 10 Cans of propane (A) 9 Hygiene bags (B) 8 Packs of batteries (A) 7 Spare coats (B) 6 Bright red flares (C) 5 Cozy blankets (B) 4 Tire chains (C) 3 Flashlights (B) 2 cell phone chargers (B) 1 And a crush-proof first aid kit (B) Price ranges? Here’s a few quotes for days Three, Two, Four and Nine: n A family gift of flashlights (three will run $15-30, Hood River Supply, Tum-A-Lum) n Cell phone chargers (two will run $30-60) n Tire chains (basic set, $30, Les Schwab, returnable if unused for the winter) n Family meals ($100 or so should cover the basics for three or four reasonably well-fed days) n The home kit should be kept in a handy place near an exit, and remember that water needs to be replenished every few months. If you have a solid first aid kit already, switch out the gift idea with “and-a-sto-o-u-t- tub-for it-all …” Otherwise, it’s a case of assembling your home or car kits and making sure all members of the family know what the resources are and how to use them (ie flares and propane). Emergency situations are at worst life-threatening, at best deeply uncomfortable if you and your family are left without power for an extended period, or traveling and find yourself in a situation where you need to wait out a storm, lengthy traffic delay, or other crisis. Notes on the 12 gift ideas: 12 – Gallons of water: that’s one per person in a four-member family to last for three days, the recommended minimum to be prepared for utility outages. 11 – Easy-open packaged goods, energy bars, dried food and nuts are good things to include for nutrition. Think of what your family of four needs for three days to stay fortified and hydrated (see number 12). Can-opener also recommended 10 – If you have a propane camping stove, keep extra fuel handy. 9 – Hygiene bags: put packaged moistened towelettes, toilet paper, and plastic ties in large garbage bags (for personal sanitation) Resource list courtesy of Hood River County Emergency Management, Barbara Ayers, manager/ 541-386-1213. The county also reminds residents to Get a Kit, Make A Plan to connect your family if separated, and Stay Informed. See www.co.hood-river.or.us to opt-in for citizen alerts. Enlarge