** Jentri Anders, PhD - KHSU Radio Interview on Lyme Disease ** WILDER Network **

Interview with Jentri Anders, PhD, Co-ordinator of the Northcoast Lyme Disease Support Group, conducted by Ruth Mountaingrove, co-host

Ruth: Welcome to “Through the Eyes of Women.” Our guest today is Jentri Anders, PhD, former adjunct faculty for Humboldt State University and College of the Redwoods, where she taught, among other things, women’s studies. Dr. Anders is a 35 year resident of Humboldt County, author of Beyond Counterculture: the Community of Mateel, an anthropological study of back-to-the-landers in southern Humboldt. She has also worked as a reporter for a number of northern California newspapers in Humboldt, Lake, Amador and Sonoma Counties. Dr. Anders is talking to us today about Lyme disease, something she views as a major public health problem in Humboldt County and the north coast. Dr. Anders has had Lyme disease for 32 years and is the co-ordinator of the Northcoast Lyme Disease Support Group, based in Arcata. Jentri, welcome to the show.

Jentri: Thank you, glad to be here. Before we do anything else, I think I should mention what I’m not and that is a medical doctor. My expertise on Lyme disease comes from my own intensive scholarly research, my own experience and three years of seeking out contact with other Lyme patients, mostly by email through our website and the southern Humboldt grapevine. As an anthropologist, I have considered these contacts to be field data and, within the limitations of my own illness and confidentiality concerns, I am trying to systematize the information I get that way for future publication. I’m not a medical doctor, but I am willing to claim that, so far, I have not met anyone in Humboldt County or within a radius of 200 miles, medical or lay, who knows more about this particular disease than I do. If such a person exists, I would love to meet her or him. I have a whole lot of questions.

Ruth: Can you give us a history of Lyme disease?

Jentri: Ok, here’s the story for rank beginners. Lyme disease is a relatively recent one caused, mainly, by tick bites. It is the second fastest growing infectious disease in the U.S. AIDS is number one. That was true in 1993. I believe I’ve heard that it is now number one, but I’m not sure where I heard that, so I’ll stick with number two, for now. The point is, far more people have it than the medical establishment or the general public recognizes. Different kinds of ticks carry it. In California, it is Ixodus pacificus, the Western black-legged deer tick. Here is the alternative history, the one you won’t find if you only look at the standard medical sources. In this country, it was first noticed in Lyme, Conn. in the mid-70s, and it was named for the town, not a person, which is why it’s Lyme disease, not Lyme’s disease. If your doctor is calling it Lyme’s disease, it seems to me, you can safely assume this doctor doesn’t know much about it. I, personally, have much more confidence in my doctor if he or she is pronouncing the name of my disease correctly.

It came to the attention of the medical world because two women in the area of Lyme, Connecticut, happened to call the Dept. of Public Health in the same week about the high rate of what looked like rheumatoid arthritis in local children. They are the heroes to me, not the doctors who made their reputations studying it and helping insurance companies deny the claims of Lyme victims.

One of them is Polly Murray, who wrote a book about it that everyone interested in the subject should read, called The Widening Circle. She had had some medical training and had been keeping detailed records for years of her own medical problems and those of her family, all of which were very strange. She had also noticed how many other children at her children’s schools had arthritis and other unusual medical problems. She called the health department. They had just had a call from the other woman, Judith Something, whose last name escapes me at the moment, so they decided to look into it.

They sent a rheumatologist to study the situation, Dr. Alan Steere. He is usually credited with discovering the disease, but the truth is, key facts about it had already been described in Europe years before. He only described it in the U.S. Steere noted the unusual cluster of cases, and the unusual symptoms that went with it, the association with a particular kind of rash and with tick bites, also the high number of ticks in the area, and named it Lyme disease. That was in the mid-70s. In 1981, William Burgdorfer discovered the presumable cause, a bacterium now called Borrelia burgdorferi (I call ’em B-flats for short, musicians will see why) and they started treating it with antibiotics.

Unfortunately, a whole lot of assumptions were made about diagnosis and treatment at that point, based on way too little information. Those got written in stone, promulgated throughout the country, entrenched in research institutions, adopted way too soon by insurance companies trying to avoid paying for expensive late-stage Lyme disease treatment and never updated with subsequent research. Those outdated notions are the ones you will encounter in Humboldt County if seek treatment for Lyme disease.

Ruth: Why is Lyme disease of particular interest to women?

Jentri: LD is of particular interest to women, number one to me, because women discovered it. It infuriates me that Polly Murray is given so little credit for her work, which is ongoing, and that Dr. Steere and his followers, these days, steamroll over her subsequent observations that don’t agree with his narrow and biased view. But, on a more practical level, women are less likely to get diagnosed and treated than men. Although there is no evidence that the ticks or the germs care what gender you are, women are more likely to get a mental diagnosis than men and the reason for that is entrenched, blatant sexism.

LD is hard to diagnose because of the ignorance of most doctors on the subject, the vagueness of all but one of the symptoms, the fact that it comes and goes, the fact that it affects every system in the body and the fact that the tests for it are so unreliable. But these aspects of it fall harder on women than men because male doctors, and most doctors are still male, are much more likely to ascribe vague complaints in women to hysteria, depression, character faults, etc.

There are statistics to back that, but I don’t need them. I’ve seen enough doctors in 32 years trying to get diagnosed, to constitute a statistically valid sample. I have been lectured endlessly by male doctors who tell me my back will always hurt as long as I fail to get myself a good man, stay home and be a good wife and mother. Rather than devote any brainpower to what might be wrong with me, they have, in all but two cases, advised me to get more exercise or talk to my minister about my repressed anger.

I have scientific evidence that more men get diagnosed than women. There was a study done in the last few years trying to determine who gets diagnosed with LD. It was found that in the age group 25 to 60, something like that, many more men than women with the same symptoms were diagnosed with LD. The authors were mystified as to why that should be. Me, I just cracked up and thought, “Well, ya’ll should have consulted with me about it. I can explain the whole thing. The doctors are male, they assume the women have a mental problem. The women have been trained to accept whatever the doctor says and there you are.”

If you are an educated woman, if you are confident and assertive and knowledgeable about your case, male doctors instantly become defensive and they can’t hear you. I myself never go to a male doctor for anything unless he’s the only specialist available. I hasten to add, the only Lyme doctor I could find, 300 miles from here, is a male, but an exceptional one and he did not treat me like that, thank the Goddess.

Generally, women doctors, at least the ones around here, though no more knowledgeable about LD, have been much more open to hearing what I have to say about it and in general are not as slavishly devoted to the pronouncements of the medical establishment than male doctors. I did have one female doctor in 32 years that I stopped seeing because she was matronizing me, but that’s it.

Point three for women, is that there is a relationship between female health problems and LD. LD causes or exacerbates PMS, for instance. The B-flats exhibit an activity cycle that corresponds to the menstrual cycle, which is why the best lab prefers that tests be done at a certain point in the menstrual cycle. It also causes cysts throughout the body, including fibrocystic breasts, which make it harder to find a breast cancer. A good friend of mine got infected within earshot of where I first got infected, about 8 years after I did. She died 20 years later, of bone cancer, after having had breast cancer, after having had LD. She didn’t find the cancer earlier because of the cysts. Another friend of mine had LD, got inadequately treated, has had a breast removed and is blind in one eye and diabetic. I think there’s a connection in both cases, but it would be hard to prove. Both had other serious medical problems, before they got LD.

Jentri Anders, PhD TRANSCRIPT OF “THROUGH THE EYES OF WOMEN” RADIO SHOW, KHSU-FM, (HUMBOLDT STATE UNIVERSITY, ARCATA CA), MAY 2003

Jentri Anders, PhD
TRANSCRIPT OF
“THROUGH THE EYES OF WOMEN” RADIO SHOW, KHSU-FM, (HUMBOLDT STATE UNIVERSITY, ARCATA CA), MAY 2003