A Mysterious Malady 

Can a California doctor cure an “outbreak” in Joelton?

Can a California doctor cure an “outbreak” in Joelton?

By Bill Ditenhafer

Beverly Simpson is sitting in her Joelton living room rifling through a thick pile of correspondence from the last few months as a muted large-screen TV across the room displays an unnaturally silent array of guests on The Ricki Lake Show.

“Those people are crazy,” she mutters, glancing up briefly from her collating. A cat lazily stretches underneath a nearby chair. In the kitchen, just beyond the generously sized television, Simpson’s mother is busy chopping vegetables from the garden outside.

“Aha, here it is,” she says in a deep, clear Tennessee voice. “Stealth Virus Encephalopathy. This is what the doctor thinks we all have.”

Simpson, an energetic and plainspoken woman of 54, is referring to an unidentifiable pain she has been experiencing for close to three years. Over the last several months, however, she has come to believe she is far from alone—a growing number of people from Davidson and its surrounding counties find themselves similarly confronted with a mystifying ailment that, in its refusal to be identified by local, county, and state authorities, is fast becoming something that she and her fellow victims are unofficially calling an outbreak.

“All I know is I hurt,” Simpson says, “and so do a whole lot of other people—too many to be a coincidence.”

Simpson owns and runs BJ’s Beauty Salon, a comfortable neighborhood operation located in the converted front room of her home on Eaton’s Creek Road. Like a lot of small businesses that regularly gather members of a community together, the beauty shop also serves as a kind of local news and gossip center for the sleepy town. The ratio of customers to stylists to, well, people who’ve just dropped by, seems to be fairly even, and it is in this type of atmosphere that Simpson began noticing a disturbing trend in the salon’s conversational topics.

“Around January of last year, more and more people were coming into the shop with identical symptoms,” Simpson says, “and because I had it, I was noticing it in more and more people. After about 15 or 20 people, I said, ‘There’s something going on. This is not a coincidence.’ ”

What “it” is, is hard to say. According to Simpson, who has spoken to or otherwise been in touch with more than 100 people about the ailment, the general description usually includes almost unrelenting pain in various parts of one side of the body such as one buttock, one leg, or one foot. And the pain is nomadic.

“Mine’s different than hers,” Peggy Lewis, a hairdresser at the shop, says of her own pain. “Mine goes up my back and into my neck and down again. And I get charley horses. It’s weird.”

As of last January, both Simpson and Lewis—and, for that matter, almost everyone else Simpson has spoken to about the ailment—had been enduring their respective symptoms for over two years, and both had been to several doctors during that time, but no one seemed to have an answer for them. At that point, Simpson knew she either needed the state of Tennessee to intervene or, barring that, she needed to find someone on her own who was willing to help. She ended up with one out of two.

“I called Dr. Allen Craig [the state Health Department’s epidemiologist], and he said they were interested,” Simpson recalls. “He asked Pam Trotter [Davidson County’s director of Notifiable Disease Control] to call me, and I explained the whole thing to her. I said, ‘We need someone to find out what’s going on.’ She told me that if I could get 75 names, addresses, and phone numbers, they’d do a questionnaire to see if anything connected everybody.”

Inspired by the prospect of official help (Simpson “almost came to blows” when her doctor suggested there was nothing wrong with her), Simpson spent $100 on a full-page ad in the Joelton Shopper, which read, in part, “WE NEED YOUR HELP! Within the past two years, have you experienced any or a combination of these symptoms regardless of treatment? 1. Excruciating pain in the hip, groin, or buttocks area then moving down the leg. (May even come and go.) 2. Unusual discomfort sitting or driving a car. 3. A weak leg with a floppy-like foot....” And the list goes on in vivid detail.

The notice had its effect, and suddenly Simpson was swamped with, by her count, more than 100 respondents, both male and female and ranging in age from their 20s to people in their 50s and 60s. As it turns out, however, both the county and the state health departments need more than the signatures and phone numbers of people who think they’re sick. They need doctors who agree that they’re sick.

“Basically, what we do is we accept reports of certain notifiable diseases per CDC [Centers for Disease Control] guidelines, and if we have confirmation of these diseases, we do an investigation,” says Trotter, an RN. “In [Simpson’s] situation, she really didn’t have a reportable disease. We didn’t have any word from any physicians, and we need their input. We were in a situation where we just didn’t have anything to go on, and that’s kind of where we left her, much to her chagrin.”

As far as the signatures and the questionnaire go, Trotter says, “I’m not really sure where she got that information. We did not say that to her.” (“I know what she said,” Simpson insists with a kind of stoic doggedness. “I did not misunderstand.”)

Enter Dr. John Martin, founder of the Center for Complex Infectious Diseases (CCID), based in Rosemead, Calif. Martin is a highly qualified researcher and physician with an extensive background in several areas of epidemiological studies. He has the smooth tone of a man experienced in exhausting extemporaneous descriptions of his work and just a hint of an Australian accent long ago smothered by years of octosyllabic medical terms. More to the point, he believes he may have discovered a heretofore undetectable type of virus that might account for the Simpson group’s pain.

“I’ve been aware of a number of these sort of outbreaks for a number of years,” Martin says.

For Simpson, Martin was something of a godsend. After years of pain, months of research, and week after week of doctors being stumped by her symptoms as the county and state health departments watched from a formal distance, along came a research physician with a little-known viral infection in search of possible victims experiencing unaccountable pain. Disease meet patient. And patient. And patient.

The particular type of disease that Martin believes he has uncovered is what he calls an “atypical virus” or “stealth virus.” Without getting overwhelmingly scientific, a stealth virus, according to Martin, has adapted itself so as to be virtually undetectable to most practicable clinical tests, even while it is actively attacking a body’s cells. Since it is a virus, it can be in a body’s entire system and can attack any area randomly and pretty much at will. And in addition to its already insidious nature, Martin says that a further hurdle to pass in the race for its containment is the health community itself.

“From the point of view of an epidemiologist, this is a nightmare,” Martin says. “There’s not a willingness to look at these cases, at least in part because they’re so difficult. There’s not a nice, clean case definition.”

The other side of the coin is an inherent reluctance on the part of governmental agencies to investigate something that may have unforeseen repercussions. In other words, if Martin’s theory proves to be true, the government may not like what it finds.

“The hard science—which is not just opinions or attitudes—is that we have characterized a virus that had come from a patient in the past,” Martin says. “When that particular virus was sequenced, it was undeniable that it was derived from an African green monkey.”

The significance of this is potentially huge. For the last three decades, kidney tissues from African green monkeys had been used to make polio vaccines, among others, across the United States—a practice that came to a halt only last year. It is Martin’s contention that any number of illnesses that have been popping up across the country in increasing numbers—chronic fatigue syndrome, fibromyalgia, anxiety disorders, autism, Gulf War syndrome, and, as it happens, whatever it is that is afflicting a growing number of people in Middle Tennessee—may be traced back to these shots. If the government unwittingly infected people with a virus...well, not even Martin has gone there yet. As Simpson puts it: “Oh, it’s gonna get nasty.”

For their part, the county and state health departments are sympathetic to the group’s plight, but they can neither condone nor condemn Martin’s work.

“Beverly told me a little bit about John Martin, and I looked him up and spoke to my colleagues about him, but I don’t have anything from the CDC about his work,” Trotter says. “What I do know is that his work...has never been replicated by anyone else. So it’s pretty hard to say that, yes, there is this stealth virus.”

Craig, the state’s epidemiologist, agrees. “The work that Dr. Martin has done is very intriguing. I had a long conversation with him, but the difficulty with his diagnostic testing is that we don’t know if anyone else has been able to replicate it. And, as he describes it, it should be easily replicable. This term ‘stealth virus,’ or this virus he believes he’s identified, has not been found by anyone else, so, frankly, I’m skeptical about it. At this point it’s theory.”

All of which puts people like Beverly Simpson in a classic Catch-22: To receive any help, a physician must diagnose an illness, but in these cases no physician is able to diagnose the illness.

As far as Simpson and Lewis and the others are concerned, whatever disease they’re dealing with has replicated itself at least 100 times, and Simpson’s got the signatures to prove it. And if the county or the state can’t help them (“They said it had to be within 30 days, and there had to be a fever and everything—like the plague, I guess, I don’t know,” Simpson says), maybe a research scientist from California can.

To that end, Simpson has arranged for Martin to fly to Tennessee and address the assembled afflicted in Joelton at 7 p.m. Thursday, July 26. (The open meeting is being held at Shadowbrook, a private restaurant at 5397 Rawlings Road in Joelton.) For Martin it’s an opportunity to do some live clinical research, and for Simpson’s group it’s a long-awaited chance to get some answers.

“I am ready for some answers,” Simpson says. “I am sick of living with this pain. The other day I said to my husband, ‘You know, I feel like I just had a baby. Can you imagine that?’ And he said, ‘No, I can’t imagine.’ I’m telling you, I’m ready for some answers. Or at least some help.”

Back at the front of the Simpson house, the beauty shop is filled with women in various states of hairdress, and Peggy Lewis is touching up a somewhat mature client’s coiffure with some delicacy.

“You know,” she reflects, “I used to have a lot of patience, but I just don’t anymore.”

“Patience? When’d you have any of that?” someone pipes in from across the room, followed by a round of knowing chuckles.

“Well, I did. There’s no need to be hateful, now,” Lewis says, faintly smiling. “Anyway, we shouldn’t hurt like this. Someone ought to be able to do something.”

“Well, I did. There’s no need to be hateful, now,” Lewis says, faintly smiling. “Anyway, we shouldn’t hurt like this. Someone ought to be able to do something.”

Comments

Subscribe to this thread:

Add a comment

Recent Comments

Sign Up! For the Scene's email newsletters





* required

All contents © 1995-2014 City Press LLC, 210 12th Ave. S., Ste. 100, Nashville, TN 37203. (615) 244-7989.
All rights reserved. No part of this service may be reproduced in any form without the express written permission of City Press LLC,
except that an individual may download and/or forward articles via email to a reasonable number of recipients for personal, non-commercial purposes.
Powered by Foundation