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Lyme does exist in Oregon:Better test systems needed

Part 2 of 2

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.

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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

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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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sleesold 6 months, 2 weeks ago

This article is an accurate portrayal of Lyme disease politics in Oregon. The science regarding whether Lyme disease is in Oregon is based on old calculations. A scientific article (Lyme Disease in Oregon, 2008) reported the number of cases counted by the Oregon State Health Division from 1999 through 2004 & the percentage of infected ticks calculated from field studies done in 2003 & 2004. A more recent study cannot be found. The Oregon Public Health Services (OPHS) guidelines for determining who has the disease is even more restrictive than the CDC surveillance criteria. Following the OPHS guidelines means that most cases are presumptive & are not counted. Thus, our Oregon numbers are bound to be artificially lower. Physicians rely on the OPHS & the CDC, so they announce to their patients that Lyme disease is not in Oregon. That 2004 study recognized that Southern Oregon has the highest percentage of infected ticks. Yet the OPHS has not counted the more than 200 people diagnosed with Lyme disease in this region. What is it going to take for OPHS to be more accurate in counting & reporting actual cases?

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royaltyreader 6 months, 1 week ago

I want to thank the author of this article for writing about the problems of no diagnosis or treatment for residents of Oregon who get sick with Lyme (which includes here in the gorge not just borreliosis but also the coinfections like bartonella and babesia each a serious illness). My daughter was bitten here in her teens and we saw many doctors who provided many (false) diagnoses that ranged from Epstein Barr to possible lymphoma. we were told Lyme didn't exist in OR and in ignorance believed that. Finally, flying her to see a doctor in the NYC area, she was immediately diagnosed with Lyme and treatment was begun--although it had been delayed so long she had become very sick indeed and lost almost ten years of her life to this terrible disease. Wake up Lyme doctors in OR!! I was fortunate to realize what was wrong soon after I was bitten by a tick and saw an MD in WA and even knowing what I was facing and having immediate treatment, it has taken years to recover-- and I can't say i am completely well even today. If you get bitten by a tick, even if you don't get the bull's eye rash, assume you could get Lyme and see a WA doctor or a naturopath and receive tests and treatments if you need them. In the early stages Lyme IS curable; once it is chronic, it is a long hard road filled with a lot of suffering. It is harsh enough to have a serious chronic disease without finding out that you cannot receive a correct diagnosis or help or treatment or insurance coverage and may be a semi-invalid for many years. It is irresponsible in the extreme for Oregon doctors to abandon those who are truly sick and suffering-- but it means the public will have to be educated to help themselves and turn to naturopaths or doctors in White Salmon or Vancouver.

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