Salvos launched in Lyme debate

The rise of the tick-borne disease in Virginia has created a political and medical divide

As far as the medical establishment is concerned, chronic Lyme disease doesn’t exist. But those who fight crushing fatigue and cognitive impairment, such as Blacksburg resident Taylor Albright, left, question that notion. After more than two decades, Taylor and husband Victor Bongard, right, believe they’ve found a glimmer of hope — long-term intravenous antibiotic therapy — but which is barely covered by insurance. KYLE GREEN | The Roanoke Times

By Beth Macy | 981-3435

Her husband called her The Tiger. Their colleagues did too.

Taylor Albright was such a fierce lawyer that she once negotiated a land-dispute settlement from $12,000 down to $200 — and she’d had the gall to try for $5.

At the Manhattan law firm where she landed after law school, she wore European designer suits. Her favorite was the brass-buttoned Burberry from London; same tailor as the Queen.

But the suits seemed too flashy for bucolic Blacksburg, where she and her lawyer husband, Victor Bongard, moved in 1999 to be closer to family and where, on nice days, she rode her Harley to work.

It was 2006, the height of the real-estate boom, and the couple were so busy with their practice and title agency — and raising three kids — that frequently they took turns working through the night.

To house their expanding firm, they bought 4.5 acres on the edge of Blacksburg between farmland and commercial property. The development would be green, she told a reporter, something that would “achieve the triple bottom line — environmental stewardship, social responsibility and economic prosperity.”

But two weeks before the scheduled groundbreaking, The Tiger lost her bite.

Lyme-carrying bacteria are a tiny wormlike spirochete named Borrelia burgdorferi. The medical establishment recognizes acute Lyme disease as a bacterial infection transmitted to humans by bites of the brown deer tick. Doctors treat it with a short-term course of antibiotics. They say chronic Lyme disease, meanwhile, doesn’t exist, and patients who say they have it are the victims of hype and hysteria. The “Lyme-literate” community says mainstream physicians have placed incomplete science ahead of patient health by not taking seriously the complaints of patients who say they have chronic Lyme and by opposing the massive doses of antibiotics that can keep symptoms in check.

Forget the Harley. Try as she might, Taylor could not get out of bed.

For 12 days she was hospitalized with life-threatening blood clots in her lungs. Doctors had initially blamed her pain on stress, but when the X-ray confirmed pulmonary emboli, Taylor was sure the sickness was related to the fatigue, joint pain and tremors she’d experienced off and on for years.

She remembered being so tired in her 43rd-story Park Avenue office a decade earlier that she sometimes hid under her desk to nap. Only her secretary knew.

She never suspected she would come to blame her illness on the black-legged tick — Ixodes scapularis — commonly called the deer tick. In its nymphal and most dangerous stage, it’s no bigger than the period at the end of this sentence.

She certainly didn’t envision being caught in the crossfire of a fight working its way into statehouses, boards of medicine and doctors’ offices across the country.

Allegations are fierce: To mainstream doctors, Taylor has a fictional disease, and the doctors treating her are charlatans who should have their licenses revoked. But to the outlier doctors willing to treat such patients, the mainstream physicians are arrogantly putting incomplete science — and their own reputations — ahead of patient health.

Taylor delved into the controversy last year around the same time the Virginia General Assembly got its first look at three of the most contentious words in medicine: chronic Lyme disease.

Capitol Square had rarely seen anything like it: More than 125 chronic Lyme advocates traveled to Richmond to lobby for a bill that would protect doctors who go outside professional guidelines to prescribe long-term antibiotics for treatment. The bill was ultimately shelved, but the size of the crowd, the placards, the fevered exchanges — seasoned observers said only the abortion issue yielded that much emotion.

All this for a tick-borne disease?

As the nymphal ticks emerged from dormancy in late spring 2010, the Virginia Department of Health sent a mass letter to doctors urging them to be vigilant in their treatment and reporting of Lyme. In a June news conference, word filtered down to hikers and suburban gardeners: Lyme disease has seeped into Southwest Virginia, up 500 percent in Montgomery County alone from 2007 to 2008.

It was already a charged issue in Northern Virginia and Tidewater, where most of the state’s 1,000 cases were reported this year and where suburbanites worried about exploding deer populations have filled community centers and meeting halls. Statewide, reports of Lyme in Virginia have nearly quadrupled in the past five years.

But a record 65 new cases have been documented this year in the Roanoke region — a place where only a handful was reported just four years ago. More troubling, experts concede that incidence of Lyme is woefully under-reported and can be as much as 10 times higher than the numbers indicate.

In October, Gov. Bob McDonnell entered the fray, creating the state’s first Lyme Disease Task Force to analyze the diagnosis, treatment and education among doctors and the public at large.

“This disease can cause severe illness in humans,” warned a news release announcing the task force. “If untreated or not properly treated, some patients may develop arthritis, neurological problems, and/or heart problems.”

Infectious disease experts in Roanoke claimed the governor’s move was prompted by politics, not science.

“I think chronic Lyme seems to be an idea that’s infectious,” said Dr. Stephanie Nagy-Agren of the Veterans Affairs Medical Center in Salem.

Taylor Albright, who is being treated aggressively for chronic Lyme disease, has dinner with her husband, Victor Bongard, and her children (from left) Victoria Bongard, 12, William Bongard, 10, and Griffin Bongard, 8. The pizza dinner is what the family calls a comfort-food dinner, which happens often when Taylor doesn’t have the energy to prepare a meal for the family. KYLE GREEN | The Roanoke Times

Dueling narratives

Back in 2006, Taylor knew nothing about the Lyme wars raging in the Northeast. She knew only that she was very, very sick.

She revised her will, mothballed her Armani and trained her co-workers to do her job. She asked her mom if she would choose a nanny to help Victor raise the kids when the time came.

Her relatives didn’t want to discuss it, but with her shrewd legal eye, The Tiger weighed the evidence in her case — the debilitating fatigue, the recurring blood clots, the fact that one in three people with pulmonary emboli don’t survive — and found it incontrovertible.

“I think I’m going to die,” she said. She was 41 years old.

Taylor had physical proof that her mystery malaise wasn’t all in her head. But it would be three more years before doctors thought to test her for Lyme.

And why would they? She was living in the New River Valley, where health officials counted just one case of Lyme in 2006.

But does she have chronic Lyme disease now? Is the enemy truly the Lyme-carrying bacteria, a tiny wormlike spirochete named Borrelia burgdorferi?

Those questions have incited blood-boiling arguments since the discovery of the disease in Lyme, Conn., in 1975. It has pitted doctor against doctor, and doctor against patient, in a debate that has muddied the usual boundaries of medicine, science and politics. Conspiracy theories abound on both sides.

“I don’t remember any other disease in recent history that’s caused such an uproar, with the stakes so high on both sides,” medical anthropologist Mark Macauda says. “And they are nowhere close to reaching common ground.”

About the only thing they agree on is the existence of acute Lyme disease, a short-lived infection similar to a summer flu. Symptoms, usually appearing between three and 30 days, can vary widely but typically involve joint pain, fevers and a telltale erythema migrans, or bulls-eye rash.

If caught in the acute stage, Lyme is easily eradicated with a short course of doxycycline — a common antibiotic used in the treatment of acne.

But from there the two camps diverge:

Most doctors, citing guidelines issued by the Infectious Diseases Society of America, believe nearly all cases of Lyme are acute, with the exception of a very small number of patients who have post-Lyme inflammatory illness. They take the position that chronic Lyme disease doesn’t exist; that short-term antibiotics decimate the spirochetes in all but the rarest of cases.

Ask them about the debate, and they’re likely to hand you copies of The New England Journal of Medicine, talk about “evidence-based medicine” and say the crux of chronic Lyme isn’t Borrelia but rather the vagaries and vicissitudes of middle-aged, middle-class life.

“Why should politics be dictating care?” Nagy-Agren says. “I never had a lawyer teach me in medical school, or a politician teach me how to care for a patient.”

But Lyme patients and what they call their “Lyme-literate” doctors spin a different narrative based on evidence of their own. They point to a high rate of false negatives on the two-tiered Lyme test, and the fact that it takes up to a month for the confirmatory antibodies to appear — complications that can lead to delayed treatment or none at all. They cite Centers for Disease Control and Prevention figures stating that 20 percent to 30 percent of cases don’t present with the telltale rash.

Left untreated in the initial days and weeks, an acute case of Lyme can develop into a crippling, chronic version of the disease that attacks the body and the brain, they believe.
Ask them about the debate, and the response is equally charged. They liken the naysayers to those who first labeled multiple sclerosis the “faker’s disease” — people who called the science wrong, leaving history to tell the tale.

“I think when people in the medical community don’t know the answer, they tend to brush the question aside,” says Roanoker Karen Fralin, who has been treated twice for Lyme in the past six years.

Karen Fralin, a South Roanoke homemaker and wife of former Del. William Fralin, believes she has had Lyme disease twice and still has intermittent pain and fatigue.

When she first turned up at her doctor’s office in 2004 with Lyme symptoms and a tick sample in hand, he threw the bag away, telling her, “We don’t have Lyme in Virginia,” she says.

But Fralin, the 46-year-old wife of former delegate William Fralin and a strong-minded woman in her own right, didn’t blindly accept her doctor’s opinion. She knew about the controversy and had several friends and a relative who’d sought aggressive treatment outside Roanoke.

When her symptoms worsened, she went to a Washington, D.C., doctor who treated her with three 30-day courses of the antibiotic doxycycline — well beyond what the infectious disease experts recommend. According to Lyme doctors: The longer a Lyme infection is allowed to flourish untreated, the more resistant to antibiotics the Borrelia becomes, necessitating longer regimens.

Fralin began to get better after several months, though she says she still has intermittent joint pain and fatigue.

When friends describe having prolonged Lyme symptoms, she advises them to circumvent local doctors and go out-of-state, too.

Such is the not-quite-underground network of middle- and upper-middle class people in the Roanoke area who travel as far away as New York and New Jersey for treatment of what they believe to be chronic Lyme, much of it not covered by insurance: a Presbyterian minister, a Hollins University professor, a Floyd factory owner, a James Madison Middle School student so sick he had to be home-schooled.

In October, a 47-year-old former emergency-room secretary died of complications her family believes stemmed from chronic Lyme. Johnette Sowder of Back Creek in Roanoke County had been seeing a controversial Lyme doctor since 2003 and had been improving in recent months before her unexpected death.

Fralin believes some local doctors are finally adopting a better-safe-than-sorry approach, even at the risk of overtreating. This year, when she returned to her family doctor exhibiting signs of a second tick bite she’d gotten in her wooded South Roanoke yard — swollen glands and joint pain, but no rash — she was treated immediately for 30 days.

Roanoke County lawyer Matt O’Herron, 39, had a similar experience last summer after rushing to the emergency room with a fever of 106. He’d been cleaning brush in his back yard but saw no evidence of a tick bite until days later, when he noticed a purple welt on his leg.

Instead of waiting for test confirmation, his doctor immediately prescribed a three-week course of antibiotics.

“I couldn’t have gotten any luckier,” he says of his full recovery. “I’ve heard horror stories from friends in Northern Virginia who weren’t so lucky.”

Either their cases weren’t detected early, when short-term antibiotics are deemed effective, or they weren’t treated long enough. CDC guidelines call for a regimen of 14 to 28 days, with allowances for a second, 28-day course if conditions don’t improve.
But in newly endemic areas such as Western Virginia, according to patients and doctors alike, treatment standards seem to be all over the place.

“I wish I could help you with a standard practice, but I am not sure there is one being used regularly,” said a Roanoke pediatrician, who asked not to be named for fear of alienating colleagues.

Research gap

This much is certain: There is a gaping disconnect between scientific research and the experiences of people on the ground. Among the 420 New Englanders whom anthropologist Macauda interviewed for his 2007 dissertation on chronic Lyme, 80 percent of the interviewees believed in the disease.

Of the doctors he interviewed? Just 20 percent.

“With newer diseases, it takes a while for public health to catch up,” said Macauda, now a University of South Carolina researcher. “The establishment may say no initially, but if more evidence comes up over time, the model can change.”

Macauda says the medical establishment wisely argues against antibiotic overuse because it fosters drug-resistant infections. Nearly 30,000 Americans die annually from infections of drug-resistant bacteria spread through hospitals and nursing homes.

But he’s equally convinced that chronically ill patients aren’t malingerers whose illness is “all in their heads,” as many doctors allege — “Doxycycline Deficiency Syndrome,” they call it, dismissively.

Connecticut, Rhode Island, California and Massachusetts have gone so far as to pass legislation protecting doctors who prescribe long-term antibiotics after the sanctioning of 30 doctors, several of whom lost their licenses.

Del. Tom Rust, R-Fairfax County, plans to revive his doctor-protection bill in the next General

In Virginia, the political battle is just beginning, with Del. Tom Rust, R-Fairfax County, planning to revive his doctor-protection bill in the upcoming session. Two doctors have been investigated by the Virginia Board of Medicine for overtreating Lyme in recent years, including a 73-year-old Eastern Shore doctor who shuttered his practice in September after being put on probation and permanently banned from prescribing narcotics. The other doctor, based in Northern Virginia, was cleared of wrongdoing in 2005.

“I have people coming to me saying their dog can get better treatment than they can,” Rust says. The two Northern Virginia counties he represents reported a combined 436 cases of Lyme last year, nearly half the state’s total. “But I have to convince the medical community that I’m not out here giving a blank check to any doctor who wants to commit malpractice.”

The controversy has had a chilling effect on doctors, and some patients claim to have fallen through the cracks as a result.

For 44-year-old pet groomer Mauricia Shanks, her descent into the land of Lyme began in July 2009 when she discovered an engorged tick in the bend of her leg. She pulled it off and threw it in the yard of her Pearisburg shop. Three days later, she awoke to a fever so raging that it took a double dose of Tylenol and Motrin to get her out of bed.

At the emergency room, staffers blamed it on a virus and sent her home. By the time her family doctor saw her a week later, she’d developed a rash. The doctor diagnosed Lyme immediately and prescribed three weeks of doxycycline, Shanks says.

But by Labor Day, her symptoms were back — times 10. Her fingers stiffened and curled involuntarily. Every joint in her body ached. It was hard to wake up, hard to think straight. “It was almost like my thoughts were arguing with each other,” she says.

Dog groomer Mauricia Shanks washes a dog at her business in Pearisburg. Shanks contracted Lyme disease in July 2009. That year, she was the first reported case of Lyme in Giles County, but she said she had a difficult time getting it reported and had go to Northern Virginia for treatment. Because treatment was delayed, she said it took her nine months to get well. KYLE GREEN | The Roanoke Times

Her Lyme test came back resoundingly positive. Rather than consult the CDC’s guidelines for subsequent treatment, Shanks says her doctor told her: “As we expected, sweetheart, you’ve got Lyme — but you’ve already been adequately treated.”

Shanks had never heard of Erin Brockovich, but over the next nine months, her story paralleled that of the feisty environmental activist. She fought repeatedly for treatment, and then fought for her case to be counted by public health officials.

She became the first reported case of Lyme in Giles County, but only because the Northern Virginia doctor she finally coaxed into treating her — with nine months of oral antibiotics — reported the case. Despite Virginia Department of Health guidelines requiring doctors to report Lyme, area health care providers concede there is confusion over whose job that is.

Emergency room director Dr. Robert Dowling of LewisGale Medical Center in Salem knows it isn’t his. “The reasonable thing to do is to have the lab that runs the test make the report,” he says.

But what happens to suspected cases that are treated preventively, without test confirmation? Those don’t fit the CDC surveillance criteria and therefore aren’t counted.
Salem infectious disease specialist Muddasar Chaudry treats 25 to 30 new Lyme cases a year. And yet most of his patients were not counted last year. He says it’s not his job to report them; it’s the primary care doctor’s.

The state health department counted just one confirmed case of Lyme in Roanoke County in 2009, and zero in Roanoke and Salem. So far this year, Roanoke has reported two confirmed cases in the region; Roanoke County, four.

But Montgomery County reported 23 — a jump possibly owing to terrain, with the New River Valley comprising more newer developments where deer and humans converge. It may also be related to increased physician education on Lyme led by Dr. Jody Hershey, director of the New River Health District.

“You’re definitely on the cusp [of increased Lyme numbers in Virginia] … and I know we can do a better job of educating physicians” to diagnose, report and treat Lyme, CDC Lyme spokesman Dr. Kevin Griffith said.

Shanks and other advocates contend that the low numbers undermine public health by giving hunters, hikers and gardeners a false sense of security.

“It infuriates me so bad because if these doctors would report the Lyme they’re seeing, then Richmond would realize we’ve got a problem here in Western Virginia and people would take notice,” she says.

For her part, Shanks passes out Lyme disease fliers to all who enter her grooming shop. She’s starting a regional support network under the umbrella of the McLean, Va.-based National Capitol Lyme and Tick-Borne Disease Association, the group that organized support for Rust’s bill.

Like Fralin and others, Shanks has become a beacon to people newly diagnosed with Lyme, helping them tap into a network of out-of-town doctors. She has regular telephone debates with the state health department’s top entomologist, David Gaines, over the reality of chronic Lyme.

She tells him: “There are certain things that science is just wrong about, and why people won’t even entertain the fact that this disease can cripple you is beyond me.”
Gaines’ take echoes the mainstream medical community’s: “A lot of people are suffering from arthritic or neurological symptoms; they have something. But I can’t say it’s Lyme disease.”

Taylor Albright laughs as she sews a patch on her son William Bongard’s karate training uniform. While William, 10, and his brother, Griffin, 8, are both advanced in karate, it’s their mom who may be staring down a tough opponent. Taylor — a lawyer who had been such a fierce negotiator that her colleagues nicknamed her The Tiger — believes she has chronic Lyme disease. KYLE GREEN | The Roanoke Times

‘On death’s door’

The Tiger didn’t have a beacon like Fralin or Shanks to guide her. She was too enmeshed in her work most of the time to even look for one.

At Duke University Law School and earlier in her career, she endured periodic bouts of pain and fatigue. In between, she was tired at best, blaming herself for her “lesser constitution” and digging her heels in harder at work.

At her worst, she had body tremors and trouble remembering things — like to turn off a boiling pot on the stove. In her 30s and early 40s, she sought out experts at the Mayo Clinic and Duke. Among the various diagnoses: depression, arthritis, an autoimmune disorder and severe B-12 deficiency.

But no one mentioned Lyme, and Taylor didn’t consider it, either, thinking that fevers were a required symptom.

She laughs when she describes how, after 18 years of trying to unravel her medical mystery, she finally deduced what it was: Her mother-in-law plays bridge with a woman whose daughter-in-law had Lyme, and after hearing about Taylor’s eerily similar symptoms suggested that she get tested for it, too.

In late 2009, she found Dr. Richard Horowitz, a Hyde Park, N.Y., internist who’s treated some 11,000 Lyme patients in 20 years. Her test results indicated “classic, undiagnosed chronic Lyme,” he told her.

Though rarely traced to Lyme, her blood clots were simply Borrelia’s latest, harshest salvo, he said. Lyme’s attack on her central nervous system was also responsible for her worsening incontinence, a result of misfiring signals between her bladder and her brain.
“She was gray, couldn’t get out of bed most days,” her husband says. “She seemed to be on death’s door.”

They were about to embark on one of the most controversial treatments in medicine, one that would try their marriage, cripple their business and nearly bankrupt their family.
And before she got better, the doctor warned, Taylor was likely to get worse.

But there was no room for negotiation. If she wanted to live, The Tiger decided, it was time to rise up and fight.

-30-

This story is the first in a three-part series on Lyme disease. It first ran in The Roanoke Times on Sunday, Dec. 19, 2010.

This entry was posted on December 21, 2010. It was filed under Featured, Lyme Disease.

52 Comments »

It’s disheartening, always, to hear of doctors dismissing patients. We innately have such respect for the people in white. Why don’t they have equal respect for their patients? Ignoring symptons or, in fact, a disease doesn’t result in much that is positive. In the recent health care debate some constantly crow that we have the best health care in the world. Really? The victims of Lyme disease in Macy’s article might have a different opinion…

Comment by Rob Neukirch — December 19, 2010 @ 11:18 am

Within the six weeks of the initial treatment of 10 days, I was completely disabled and bedridden. There was no mistaking when my symptoms all began because I had the tick attached to me. My doctors used the standard “rubber stamp” “one size fits all” treatment, as outlined by the CDC guidelines, which the IDSA says is sufficient. It took me two years to recover not 10 days or 28 days, I lost my job. It stole two years of my life as I knew it and later another year. My friend that was in his late sixties that helped to take care of me, while my husband was at work.
I ask those that don’t believe: Would you be able to control your feelings when your life has changed drastically? Would you be able to remain dignified when you became so ill that you had to be bathed and clothed by someone because you could not do it yourself? Would you be able not be angry when you weren’t able to see anything at all as soon as it became dark for several months? Would you be happy that you became so ill that you were unable to control your motor functions? Would you be able to enjoy life if everything that touched your body burned like it was on fire? Would you not be embarrassed when you could not control your bladder or bowel movements? Would you be happy if one day you awoke only to find that you could not hear a thing and then have this continue for months?
Or, would you be able to remain calm when you are so ill that you can’t walk? Would you be able to remain unruffled when your friends used to call you “the walking encyclopedia” and now you cannot even iterate a full and complete thought? When you were known for your great speeches and all you can do is slur or stutter? When you were known for your perfect audits and now you are lucky if you remember how to add two and two? When you used to work 45 hours or more a week and still be full of energy and now you are lucky if you can stay awake for an hour?
I was afraid to eat in public when my friends were taking me out for fresh air and a nice lunch because my hands shook so much that I often couldn’t even get the spoon to my mouth or hiding my arms deep in my pockets when I could bear to wear clothes so that people wouldn’t notice the uncontrollable shaking. Or, having to be assisted to just use the restroom or take a bath? And, worst of all, would you want to continue to go on living if every breath you took felt like an electric current coursed throughout your entire body?
My final note to all of you is that most doctors follow the stated guidelines used by the CDC which are the ones that the IDSA has outlined for them. After reading several of these stories, are you confidant that you will be treated appropriately?

Comment by Lyme-Aware — December 19, 2010 @ 2:08 pm

I think it is important to note that most all the doctors that are agressively treating “chronic lyme” agree that it is not caused by the Lyme spirochete alone, but rather by a complex association of tick-borne co-infections….Lyme in concert with Babesia, Bartonella, and/or Erlichia. Few primary care doctors are even familiar with these organisms, much less their treatment or the myriad ways they interact with Lyme to cause seriously debilitating conditions that are refractive to treatment.

The doctors that discovered H. pylori as the cause of ulcers were ridiculed and persecuted for years, before ultimately being awarded the Nobel Prize for their work. I know doctors at the forefront of the Lyme debate…they are without a doubt the most dedicated and skilled medical scientists I have ever encountered.

The challenge here is that front line medicine has had to get out in front of research, out of necessity. Faced with patients for whom the medical establishment could offer absolutely no help, these doctors have had to use their skill as diagnosticians to try and find out what is wrong. What they are clearly finding is that long term “cocktail” treatment with antibiotics (much like what is required for TB) is getting people better. But other doctors don’t have the benefit of seeing these “case records” to validate/invalidate this approach. The obvious next step is more research that looks hard at the protocols these doctors are using and quantifies how people improve. Until then it is one group’s word against another.

And until then, this is a question of patient’s rights and doctor’s rights. If someones life is degraded to the extent that he/she cannot work and is in constant misery, do they have the right to get medical treatment that is still in the experimental state? Do doctors have the right to use their best judgement and personal experience in seeking possible solutions for desperate patients whom the medical establishment has otherwise failed to help?

I believe that absolutely these are the rights of patients and doctors, as long as it is done with acknowledgement of potential risks…a mutual informed decision of doctor and patient.

Comment by John — December 19, 2010 @ 5:37 pm

The continued ignorance or chosen ignorance of mainstream doctors is frustrating and angering. Many, many people are not treated and thus not cured because of the lack of support in the medical community. Lyme Disease is a real problem and more people need to hear about it! Keep up the good work.

Comment by Joyce — December 19, 2010 @ 6:01 pm

I am most appreciative of Ms. Macy’s effort to highlight some of the complications/conditions beyond the usual ones listed – fatigue, pain, etc. The blood-clotting complication is very serious and most definitely not viewed as related to lyme disease, even though there is medical literature that does relate it to chronic inflammation/infection. There are tests to diagnose blood clotting disorders, and they should be administered to anyone who continues to present illness symptoms after standard treatment.

The protest over the dangers of long-term antibiotics use has eclipsed the equally serious problem of medicating the range of complications or conditions that develop when standard treatment fails. Warfarin is the first-line treatment for blood clotting conditions, for example. Not a nice drug. Imagine having to depend on this drug for 50 to 70 years, as was the case for my daughter, who was prescribed this at the age of 22 by the hematologist. This is but one of a long laundry list of dangerous medications which have been prescribed over the past 7 years since she was diagnosed with and treated for late stage lyme that had gone undiagnosed for at least two years.

I resisted extending antibiotics use for her when she relapsed; but after several trips to the emergency room for secondary complications, I realized that it was our safest option! If we can’t cure, or at least manage, the persistent infections with antibiotics, this secondary list of medications will continue to grow- and with it, the risk to her life! I would ask readers to consider this before you judge. If you haven’t walked in the shoes of a lyme patient, or his/her caretaker, take time to learn before you judge. If the webcasts from the IOM Workshop are still on their website, I urge you to watch them and learn that the scientists who are studying the field of tick-borne disease recognize that this is a complicated pathogen, described even as unique by some. Until they learn more about it, we should not be closing the door on any treatment that might bring improvement in the health and quality of life of its sufferers!

Thank you to Ms Macy and the Roanoke Times for responsible reporting.

Comment by Cindy Eisenhart — December 19, 2010 @ 6:04 pm

For doctors who think that chronic Lyme disease does not exist, they would feel differently if they had the disease. I contracted Lyme in 2001 when I was hiking in NY state. Initially I had flu-like symptoms and at first it was thought I had a virus. However, a week later I was still running a fever and had a rash, so I was given a short course of antibiotics and got better, only to become ill again in a couple weeks. My whole body felt like it was under attack. I went from one problem to another, never completely getting over one thing until something else happened. I was in excellent health before this. I was in extreme pain and had a myriad of problems. I kept running fevers. To make a very long story short, my doctor would prescribe a short course of antibiotics and I would get better for a while, only to become ill again. Once I ran a fever for over a year, ended up in the hospital, then ended up having lung issues, but they could find no known cause, although a CT scan showed nodules in my lungs and I had to have a lung biopsy. At least this was something the doctors could see; it could not be attributed to “Doxycycline Deficiency Syndrome.” Finally I became so ill that I went to a Lyme literate in Washington, DC, who diagnosed me with Lyme disease. I was treated with a heavy dose of antibiotics for 10 1/2 months. After the long-term antibiotics, a CT scan of my lungs was clear – for the first time in about three years! There were times when I really thought I was going to become disabled. For the most part, I am much better, but I do have flare-ups. Earlier this year in January I became ill, and blood tests showed I had a bacterial infection. I was put on five different courses of antibiotics over a period of four months before I got well. During one of the doctor visits (I had to see a different doctor as my family physician was not available), he ordered blood work, which showed a bacterial infection. My husband was with me and he asked the doctor if it could be a flare-up of the Lyme disease. The doctor said, “no, she has a bacterial infection.” Lyme disease is a bacterial infection! How scary is that!!

Thank you for everyone who is working to bring attention to this horrible, misunderstood disease!

Comment by Sherrion Struppler — December 19, 2010 @ 8:02 pm

From Roanoker Lucy Lee:

I was pleased to see Beth Macy’s article on Lyme Disease in today’s Roanoke Times. I have been interested in the disease since 1993 when I learned of Roanoker Sherri Spell’s struggle with it. In ’91, when Sherri was 27, after a lifetime of flare-ups, she finally got a diagnosis from an out-of-state doctor. Her illness took the form of Lyme arthritis, with severe muscle and bone pain. Sherri was able to get a service dog to help her in ’94. The Roanoke Times wrote an article about her situation Dec. 14, ’93.
http://nl.newsbank.com/nl-search/we/Archives?p_action=search&p_maxdocs=200&p_product=RO&p_theme=ro&s_dispstring=(sherri%20spell%20)&p_field_advanced-0=&p_text_advanced-0=(%22sherri%20spell%20%22)&p_perpage=10&p_sort=YMD_date:A&xcal_useweights=no

My sister-in-law contracted the disease several years ago and suffered with it for almost two years. She finally got help from a doctor in Baltimore, then was able to get in with the famous Dr. Zang in NY, who cured her. She had not been able to tolerate the double dosing of antibiotics, and Dr. Zang treated her with herbal remedies. Lyme is a debilitating disease, and I hope that Beth’s articles will go a long way in educating the public and the medical profession about taking its symptoms seriously.

Comment by Lucy Lee — December 19, 2010 @ 8:54 pm

An e-mail from an area lab worker that has interesting insights into the reporting process:

Beth,

I was reading your article on Lyme disease in today’s paper, and
there seemed to be some question of who is responsible for reporting
to the State Health Department in Virginia. I work for a laboratory
and have in the past been responsible for ensuring that we meet the
State reporting requirements.

There is a list (attached) published by the VDH that lists all of
the infectious disease “conditions” that are reportable. The list
is followed by a key which clearly states “These conditions are
reportable by directors of laboratories. In addition, these and all
other conditions except MRSA are reportable BY PHYSICIANS AND
DIRECTORS OF MEDICAL CARE FACILITIES.”

“Lyme disease” is not reportable by laboratories according to the
list. Although I don’t know for certain, I believe this is because
Lyme disease is a diagnosis not a test. I have not researched the
testing, but I believe that current tests are for the patient’s
immune response to the organism, not for the organism itself. An
immune response does not always indicate active infection so the
clinician must use the test results plus symptoms, etc before
actually diagnosing the condition.

All hospitals have infectious disease departments that are
responsible for reporting to VDH. I am confident that if the
patient reaches that level of care (hospitalization), the VDH knows
about their condition. If on the other hand, private practice
physicians are waiting for the labs to report Lyme disease…well,
you get the picture.

Hope this is useful info!

Comment by Beth Macy — December 19, 2010 @ 8:59 pm

Another very interesting e-mail from a lab worker:

Ms Macy,
I was so excited to read your article in Sunday’s paper. As a Medical Laboratory Technologist for the past 25 years, I realized there was a problem with the reporting of not only Lymes disease but all state reportable diseases. I agree with Dr Robert Dowling of Lewis Gale Medical Center in Salem. The reporting of positive results should go to the laboratory. We are the professionals that test, review and result the assays.
Several years ago, I worked with our Information System department (Suazanne Tardiff) to build a marker that i could attach to mark the state reportable diseases. When I reviewed a positive result i would mark the report to print on our Infection Control Nurse’s printer (Jennifer Brumfield). She in turn would notify Dr Jody Hershey (Montgomery County Health Depatment Doctor). This is a wonderful system and that is why I think Montgomery County (Lewis Gale Montgomery) has had the highest reporting rates consistently for the last several years. It is a model that is worth sharing.
Thanks again for writing an article that raises awareness on so many different levels.

Leslie Hill
MT (ASCP)

Comment by Beth Macy — December 19, 2010 @ 9:01 pm

Diagnosed in 1992 w/classic ‘CDC’ Lyme (8″ bullseye rash, 2 high titers, severe joint pain, spiking fevers, swollen glands, heart arrhythmias, severe headache, blurred vision, shooting ear pains), I was treated successfully in New York State with 6 weeks of Cipro and another antibiotic (Doxy?). I felt totally cured within 3 days of beginning the antibiotics: no more symptoms. Still. However, within six months I developed autoimmune thyroiditis. Coincidence? Then, within 20 years of the Lyme diagnosis, developed breast cancer.Thyroid dysfunction has been correlated with an increase in breast cancer risk. LD>Thyroiditis>Breast Cancer? Maybe/maybe not. In any case, it has been my experience that the cheapest/most effective strategies to deal with various health challenges are fundamental ones: organic/non-GMO food, sunshine, safe drinking water, moderate exercise, good friends, and rest, rest, rest when needed. Easier said then done, often the basics are all that’s left us to fill any knowledge gaps extant in current medicine until hard science can provide us with a proven ‘cure’. Not to be preachy, but maybe this encourages anyone struggling with a chronic illness: every day, a little progress. Your body was designed to heal (“beautifully and wonderfully made”), given what it needs to do so. Hang in there.

Comment by dot romano — December 19, 2010 @ 9:59 pm

I am grateful to the Roanoke Times for its coverage of the Lyme disease debate. It is true–in my experience at least–that the existence of other tick-borne illnesses in conjunction with Lyme complicates treatment. I became ill in April 2002 and have been ill with only a few periods of respite ever since then. I have Lyme disease, babesia, and bartonella, all tick-borne illnesses. I saw the tick. It was, in fact, a deer tick, and I did live in a Lyme-endemic area (the Western edge of Baltimore City, bordering on one of the largest urban wilderness parks in the country and alive with deer).

Even with all that, I had to fight for treatment from the start. The severity of my neurological symptoms (headache, back pain, joint pain, numbness and tingling, brain fog, and so on) was astonishing, especially given that I had been perfectly healthy and active two weeks prior.

I was told by the emergency room doctor I saw when my primary care physician couldn’t see me (no appointment available for three weeks) that there was no Lyme disease in Maryland. I was told the tick I removed was not a deer tick. I was told that I couldn’t be treated without a positive lab test even though I had exposure and symptoms.

Eventually through sheer persistence on my part the doctor agreed to give me two weeks of Doxycycline. I improved, relapsed again, was given a 30-day course of doxy,and so on and so forth until a doctor thought to test me for babesia. My test came back positive and I was treated for that, and improved, but then relapsed again. In 2005 my doctor informed me that I had been adequately treated and that I now had fibromyalgia–despite the fact that my symptoms had not changed but had in fact worsened–denied further care, and encouraged to go to a rheumatologist who confirmed the diagnosis of fibromyalgia and offered me painkillers and told me that “this was just something I would have to deal with”.

Throughout this the majority of my Lyme tests (those available through standard labs) were negative or equivocal. My test for babesia was a strong positive, and testing via Igenex in 2003 and again in 2010 showed strong positives (although still not meeting CDC reporting guidelines) for Lyme, babesia, and bartonella. The negative and equivocal tests were used to deny me appropriate treatment, over and over again.

I have been losing function–and going from doctor to doctor in search of help–ever since then. The fatigue is overwhelming, the pain a full body pain that is simply off the charts. My feet and hands tingle and burn at times. I have trouble walking due to tremor, weakness in the legs, and balance issues. My short-term memory is nearly non-existent. I cannot sequence simple tasks, or navigate a familiar neighborhood. I have trouble speaking in coherent, complete sentences. I have become fearful of driving; I am not confident that I would be able to react in time to a dangerous situation.

I lost one job in the eight and a half-years I’ve been ill due to taking too much sick leave, and I am about to apply for disability as I can no longer function as a database administrator. I am now on IV Rocephin via a PICC line and my mind is functioning a little bit better–eight weeks ago I could not have written this note–and now it “only” takes me an hour to organize my thoughts and type them into the computer.

I don’t expect that I will be well in a month, or three, or six, but I hope to regain some level of functioning over the long term; if my insurance continues to cover the treatments, if my doctor isn’t hounded out of treating Lyme patients and doesn’t have his license taken away. If treatment is cut off, I don’t know what I’ll do as I won’t go back to where I was even eight weeks before.

Lyme is a nightmare. It can take away your livelihood, your hobbies, your friends, your spouse, your financial security, your enjoyment of nature, your mind, and your body. The best way to deal with Lyme is not to get it in the first place, but that is easier said than done, as the deer population continues to grow unchecked in Lyme-endemic areas. Once you have it, it is important to seek early treatment and to make certain your doctor takes you seriously and looks for other tick-borne illnesses which don’t necessarily respond to doxycycline and can complicate treatment.

To suggest that the vast array of symptoms Lyme and related tickborne illnesses can cause are in a patient’s head, that they are suffering from “Doxycycline Deficiency Disorder” or simply can’t deal with the simple aches and pains of getting older (I was 35 when I first became ill by the way) is beyond disrespectful. Putting the onus on the patient is not going to make the problem go away.

Comment by Gail Shochet — December 19, 2010 @ 10:01 pm

While the doctors duke it out, the patients suffer, suffer, suffer and sometimes commit suicide. I am one of the “lucky” chronic Lyme patients. After being ill for several years, a brilliant psychiatrist referred me to a Lyme-literate physician. (I live in Rhode Island.) I was treated for three and a half years, and I believe I am about 85 percent better. I felt better at 50 than I did at 40 and I feel better at 60 than I did at 50. This battle between the doctors, researchers and insurance companies was raging more than 15 years ago when I was first treated. It is disheartening to hear that we are in the same place today. It is too emotionally painful for me to reflect on what “might have been” for me had I not been ill with this horrible disease.

Comment by Janet Cooper — December 19, 2010 @ 11:06 pm

Dear Ms. Macy,
Thank you for having the courage to publish your series on Lyme Disease. I am now well after prolonged treatment for Lyme Disease. I was treated by both sides, and I know which side made me well. After ~21 months of powerful antibiotics, my body was still not fighting Lyme and could no longer tolerate antibiotics. A Lyme Literate MD (LLMD) figured out what was preventing my body from healing. Dr. Warren Levin of Vienna, VA treated me with a prescription antifungal for Candida (antibiotics promote yeast overgrowth), a yeast-free diet, supplements and the Cowden Protocol (herbal). My body finally fought back Lyme big time! I felt better than I had ever felt in my life, even before I was bitten. I felt so well that I started dancing around the kitchen while I was cooking dinner at night. Total strangers started coming up to me to say how much better I looked.

Perhaps the CDC could learn from the doctors who treat patients like me how to better treat such a terrible disease?

Comment by Caroline Boone — December 19, 2010 @ 11:15 pm

Thank you, Ms. Macy. You wrote a human story about people with Lyme. The overwhelming majority with chronic Lyme are hurting and don’t realize it’s Lyme and that they have to fight for treatment. The Roanoke Times is willing to alert the public, when the CDC is not.

I was dieing from chronic Lyme, bartonella and babesia. I had horrid head pain, muscle pain, arthritis, bone pain, my head was cocked out to the right and downward, and more. Doctors thought I was faking it. But what frightened me was that I would die leaving behind doctors who turned away from me, a hurting patient: How many more were ignored? I thought, “So this is what doctors in the US have come to.” Physician do no harm? Oh my God. My exhaustion was also disabling. I couldn’t use a cane because that required multi-tasking and I wasn’t capable of that–I had neurological confusion. And ataxia.

When a person can’t work to support themselves due to illness … what can be expected to happen? 31 doctors ignored my meningitis, encephalitis, a pre-cancerous growth and more.

Then I figured out I probably had chronic Lyme. I’d had a huge Lyme rash many years before and hadn’t known it signaled Lyme. I fought for and got excellent antibiotic combination treatment from LLMD’s (Lyme-Literate MD’s) who helped me when no other doctor would. After two-and-a-half years I was 90% better! For that I will always be grateful.

The old folks back in the fifties were right: “Ticks are filthy!”

Comment by Diane J Marie — December 19, 2010 @ 11:39 pm

I read with interest the first installment of Beth Macy’s report on the issues surrounding the diagnosis and treatment of Lyme Disease (Salvos Launched in Lyme Dispute in The Roanoke Times). She should be highly commended for her careful journalism, marshaling of facts,
and clear description of the issues. It was a breath of fresh air. I look forward to the remaining two installments.

Comment by Mary Jane Heppe — December 20, 2010 @ 1:58 am

I’m one of several university Professors who presently cannot even live in his home state because of Virginia’s patently absurd stance on Lyme’s Disease. This disease has crippled and disabled me, and its impact on my family is terrible to even contemplate. I’ve had two major independent labs confirm my Lyme results, and I’ve taken the additional step of running my own labs to confirm the diagnosis, simply because of the debate I saw in the literature. Speaking as a researcher, by and large, you have to try extremely hard NOT to see Borrelia burgdorferi in its spirochetal stage. (Cystic forms are considerably harder to identify and L-forms do present challenges. Biofilms are extremely difficult to find in any test, except in two conditions: (1) autopsy or (2) actively watching them form from samples, which can even be achieved with effort using a darkfield optical microscope and appropriate laboratory conditions. The brilliant published papers of Alan MacDonald illustrate how researchers may “try this at home” (preferably in a laboratory with highly sterile conditions and adequate decontamination facilities), should they choose.

I find it more than a little ironic that, as a Professor in excellent standing, I cannot give myself the treatments that my former students who are now MDs could — if they lived somewhere other than Virginia. I also find it ironic that Medical Schools look to me to recommend and screen students, when in many cases, I would not even recommend many of the same schools’ “Professors of Medicine” for the programs in which they allegedly teach. My conversations with these individuals almost invariably leave me stunned. They remember almost no biochemistry, possesss literally negligible knowledge of foundational modern microscopy, and — by their own admission — tend to underperform when compared to Google searches on the same symptoms entered by a Nurse Practitioner (who knows the language). How such individuals have anything to offer actual students of Medicine, compared to those who teach in more challenging and far more independent graduate programs, such as Biophysics, is beyond me.

Nevertheless, they gladly take money, awards, and perks (vacations, cruises, etc.) from “vaccine manufacturers” (who strangely have yet to produce a single working vaccine), insurance companies, and pharmaceutical firms, who effectively openly launder money to fund research to make their ill-conceived “round peg” chemicals fit into square holes. The only people more upset at these firms, in my experience, are their own senior biochemists, who daily observe their careful notes and warnings discarded by marketing and management. And I must say that there is little real protection for whistleblowers in this area, which is another legislative matter that should be addresses.

Moreover, my students return from 4 years of medical school concerned that the entire experience has made them demonstrably WORSE at medicine, biology, and microbiology. The ones who can afford it just go on to obtain PhDs in Neuroscience, Biochemistry, or Microbiology at top schools and look back on their days in Medical School with general intellectual and ethical contempt. Others find themselves financially trapped into propping up a system they find unconscionable, and many either struggle with severe depression, burnout, and even alcoholism and drug addiction. (Please read surgeon Atul Gawande’s award-winning book “Complications” for more details on this latter point.)

An excellent piece on how rancid the medical field has become — by grossly taking advantage of information asymmetry vis-a-vis the general public — is found in an article by David Friedman in the November 2010 issue of The Atlantic: “Lies, Damned Lies, and Medical Science.” I don’t agree with The Atlantic on much, but this article is thoughtful, well-researched, and extremely accurate.

In spite of the persona you encounter, your doctor is seldom the advocate you need. They are usually incapable of actually providing the services they advertise for patients with serious illnesses, and many will gladly smile, look kind and concerned, then look the other way and disregard your symptoms, rather than own up to their own disgraceful state. Those who are capable — for example, all of my doctors (we’re in double-digits and counting) agree on my severe, late Lyme diagnosis. However, all doctors I’ve worked with in Virginia are terrified to treat it, for fear of the very real reprisals from insurance companies that will most certainly destroy their livelihood. Legislation MUST be enacted to make medical practice legal again in Virginia and to force insurance companies to own up to their explicit contractual obligations. If you miss a payment, you cannot expect them to cover you. But if you actually become seriously ill, rest assured that they will leave no stone unturned in their attempt to abandon you, punish your doctor, and intimidate even large, well-established laboratories.

The bottom line is that if one doesn’t successfully receive treatment early, Lyme’s disease can become a life-destroying and disabling disorder of almost inconceivable proportions. No insurance company wants that kind of liability, and they will gladly pay off (and have) anyone they can on the IDSA/Lyme panel to deny that it exists. I refer, of course, to those IDSA members who did not publicly resign from the panel in disgust. I would name names, but frankly, others have made that case, and I don’t want more harassment than the disease itself provides. The fact that multiple Attorney Generals have filed suit against IDSA should raise SERIOUS red flags for those who believe that the Lyme panel of IDSA is, in fact, even remotely credible.

ILADS has filled the void that IDSA has left, and they are a very impressive team of researchers and doctors. For more details — and especially before drawing conclusions — I implore everyone reading this to order and watch the DVD “Under Our Skin.” It has some limited technical content, but it is principally an account of the disorder and the reasons for our current predicament for the layperson. If you watch it, you will most likely literally save your own life or the life of someone you love, especially because Virginia is reaching serious epidemic levels of this disorder, as it has spread in many ways, perhaps principally down the Eastern Shore from Maryland and now well into southwest Virginia and the Carolinas.

Lyme’s disease does NOT have to be chronic, but it IS very hard to treat, and it is unbelievably time-consuming, painful, and expensive. In the words of its renowned and highly-respected discoverer, William Burgdorfer, “The controversy over Chronic Lyme’s Disease is a shameful one… Every year, all of the research money goes to the same people who have produced the same thing for the past 30 years — Nothing.”

Comment by Professor and Researcher — December 20, 2010 @ 4:07 am

I am so glad you are trying to inform more people about this disease. The one piece of information I found very disturbing was a quote from Dr. Muddasar Chaudry who said, “It’s not his job to report them: it’s the primary care doctor’s.” Why is this? Most of his patients have been referred to him because he is the Infectious Disease Specialist so why is he not the one to report this disease? He is also assuming his office is communicating with the primary care doctors office about the diagnosis. However, maybe this information was not passed along and maybe this is why it has taken so long for this to be recognized as a true disease. In my opinion, the doctor responsible for treating the patient should be the one to report it. Awareness is a powerful thing.

Comment by Tara — December 20, 2010 @ 9:27 am

The Tribune’s and LA Times December 8, 2010 piece, “Chronic Lyme disease: A dubious diagnosis”, correctly emphasizes the importance of “evidence based medicine” grounded in good science as the cornerstone of proper diagnosis and treatment of illness and infection. A basic tenet of scientific evidence is the lack of bias. After many well-designed studies clearly demonstrate that the investigators “find” what they expect or want to find (even when they have the best scientific intentions), double-blind studies were introduced to eliminate not only bias, but even the perception of bias. Unfortunately the “evidence based medicine” the above-mentioned article refers to resulted from “… a deeply flawed process rife with conflict of interest that improperly excluded alternative views and information” and the investigative panel’s “… undisclosed financial interests held by several of the most powerful IDSA panelists.” [Conclusion of Atty General, Michael Blumenthal’s formal investigation of the IDSDA panel that established Lyme Disease diagnosis/treatment guidelines]. Therefore, corruption of the basic scientific principles invalidates the findings of the so-called “evidence based medicine.” A straightforward confirmation of this lack of scientific validation is more clearly and simply expressed by D. Cameron, M.D. than my efforts:

“The science to-date is woefully inadequate given Lyme disease has reached epidemic proportions. The most-oft cited studies are too small for the results to be generalized, causing conclusions to be based more on interpretation rather than iron-clad scientific evidence. … Treatment guidelines authored to defend a one-sided point of view only serves to undermine the integrity of entire medical community”
The Roanoke Times’ reporter, Beth Macy’s report (http://www.roanoke.com/news/roanoke/wb/271231) significantly sheds light on the issues associated with the complexities of Lyme disease, its difficult diagnosis and treatment. On behalf of all those suffering with long-term Lyme disease and on behalf of all those who will be victims of this increasingly expanding endemic, my sincere appreciation for this sensitive contribution to the Lyme disease dialogue.

Comment by barbara g. cohen — December 20, 2010 @ 11:03 am

So many people go through life with chronic and recurrent debilitating symptoms which significantly affect their quality of life as well as those who both care and depend on them. They seek help both through their personal research and from experts such as doctors.

In this article the focus is on Lyme Disease, looking at the low probability of Lyme-related infection in northern Virginia, which I would classify as hoof-beats coming from a zebra, and not the horse. One considers such a possibility only with an open mind, and a good education.

The difficulty in getting to the correct diagnosis and treatment lies in the confusion surrounding one’s belief systems and knowledge: The tests for Lyme are not perfect so we are left with probabilities arising from the false-positives and negatives of Lyme testing. Thyroid disease runs into similar dilemnas.

Symptoms add to the confusion to ascertain the correct diagnosis as well: In one looks at a triad of symptoms such as fever, rash and arthralgias (aches and pains), the list of possible causes is virtually endless. Lyme Disease could be on this list, as well as thousands of other infectious, immunological, and cancer-related diseases. Environmental toxins such as pesticides and herbicides are possible culprits as well. This morning I read an article on hexavalent chromium (Chromium-6) of “Erin Brockovitch” fame found throughout the nation’s water supplies; in New York, Chromium-6 in NY potable water has been shown to be more than 3 times higher than “acceptable” levels, so we should add this one to the triad list as well.

And what should we expect from the one-million gallons of the dispersant Corexit dumped into the Gulf of Mexico? Corexit was banned by Britain several years ago and just happened to be available in BP warehouses. Dispersant does not remove the oil: It only allows oil to mix into the water so that we can no longer see it. It essentially turns a 2-dimensional problem into a 3-dimensional one. I am certain we will soon be reading articles similar to this one called “Gulf of Mexico” Syndrome.

As for the patient who comes to my office with the label “Lyme Disease,” I keep an open mind. Antibiotics will not cure anything without the assistance of one’s immune system, and doxycycline has been shown to relieve aches and pains in a manner similar to aspirin or ibuprofen (advil), in addition to its beneficial anti-borrelial properties.

I have worked extensively in both the conventional and alternative medical worlds, and my feeling is Lyme Disease is often misdiagnosed and overtreated, in the manner, like many areas of medicine, that “give a man a hammer and everything will look like a nail.” I still maintain an open mind, and will not rule-out a Lyme possibility, as all good zebra-hunters must do.

This article is journalism at its best: It digs into the lives of real people, expresses both sides of the controversy, and most of all, evocatively parks itself in neutral, leaving the reader to decide what’s really going on in the world of Lyme Disease.

Comment by Thomas Bolte, MD — December 20, 2010 @ 11:06 am

Thank you Beth Macy for writing this timely article. We as physicians have a primary responsibility to do what is best in any individualized situation for our patients based upon our examination, our experience, our clinical judgment and our knowledge of the medical literature. Medicine is not a popularity contest and we should not be influenced by well intentioned but incorrect pressure from others who have been misled by the IDSA guidelines which were highly influenced by imbedded interests. This is an epidemic that begins with a tick bite and is perpetuated by misinformation. Prevention, early diagnosis and effective treatment are critical.
Robert Bransfield, MD, DLFAPA
President International Lyme and Associated Diseases Society
President Elect New Jersey Psychiatric Association
Clinical Associate Professor Robert Wood UMDNJ Medical School

Comment by Roberrt Bransfield, MD, DLFAPA — December 20, 2010 @ 12:28 pm

There are two effective treatments for chronic lyme that are not well known:

1) lactamase inhibitors (clavulanate, sulbactam). There is some evidence that borrelia contain lactamase enzymes (though there has been very little research on this important question). Lactamase enzymes are used by bacteria to degrade beta lactam antibiotics (penicillins, and cephalosporins such as rocephin). Lactamase inhibitors greatly increase the effectiveness of beta lactam antibioticss. A 1995 clinical report from Austria describes 4 cases of chronic lyme not cured by IV antibiotics that were successfully treated with an antibiotic+lactamase inhibitor combination. This treatment is not well known and is very seldom used, which I find strange. Amox+clavulanate has been very helpful for my mother who has chronic lyme. Email me and I can send the paper.

2) Hyperbaric oxygen. A clinical study indicates that hyperbaric oxygen is effective for chronic lyme. Borrelia are anaerobic and very sensitive to oxygen. Oxygen has essentially perfect tissue penetration, so it can travel to the tissues where borreli like to hide. I can send a paper on this as well.

email me at vaporgeniegmail.com for references.

Comment by dan s — December 20, 2010 @ 1:07 pm

The film shows a patient with hundreds of vials of medicines that she is taking for “chronic Lyme disease” at a personal cost of more than $40,000 — as the narrator tell us. After seeing this, any fair minded person would conclude that the physician who prescribed all of these remedies is using a “shot-gun” approach and doesn’t have a clue as to what he/she is doing. The plain and simple fact of the matter is that the patient is being used like a “guinea pig”. To call such a person a “charlatan” would be too kind.

The NIH has funded four randomized, placebo-controlled, clinical trials showing that extended antibiotic therapy is not beneficial for the treatment of “chronic Lyme disease” and may even be HARMFUL. Since the largest of the four studies showed a placebo effect of 39%, I challenge those who claim extended antibiotic therapy is beneficial to prove their case by presenting all of their clinical findings to an impartial third party for critical review. If they are right, one would expect to see a benefit in at least 80-90% of treated patients, instead of the 39% attributable a placebo effect. The reason why this has not been done is there is no such proof of benefit. All should demand such proof before subjecting their bodies to unproven and potentially harmful treatments — at their own expense. Under such circumstances, is it any wonder that health insurance companies won’t cover such costs which only needlessly add to the cost of health care, making it difficult for some to obtain affordable health insurance.

Comment by P.J. Baker — December 20, 2010 @ 2:28 pm

Thank you for expressing many of my thoughts more clearly than I can. My mind is working much better after 2 years and 8 months of antibiotics but I still find writing and computer work in general to be overwhelming.
Hang in there!
(are you in VA?)

Comment by Patricia Hetrick — December 20, 2010 @ 2:49 pm

It’s certainly a topic that brings the crazy out of the woodwork. I thought the shilling for “the famous Dr. Zang [sic]” and his herbal cure would be the topper, and then comes the entirely incoherent pitch for HBOT.

Comment by E-manuel — December 20, 2010 @ 3:25 pm

I have been lucky to be treated by a doctor who has chronic lyme disease, however, it took 7 years to diagnose properly. Additionally it took many years after being bitten (bulls eye ignored due to my complete lack of knowledge of what it was) before I got seriously sick and disabled in 2000. I did get better after 3 years of aggressive antibiotic treatment…however, symptoms linger and reappear if I push my self too hard (these days that would be anything over 4 hours of work daily). I was treated for co-infections as well, which often times is completely ignored in discussions about chronic lyme; most people who are infected with lyme are also co-infected with other bacteria.
This disease has cost me a successful corporate career, a very successful business I started after my disability in 2000, tens of thousands of dollars in medical bills, my healthy income (I almost lost my house), a relationship and 10 years of my life coping with varying degrees of disability. In addition to the physical symptoms (extreme fatigue, nerve pain, muscle pain, muscle twitching, loss of balance, migraines just to name a few), the neurological symptoms are the worst to deal with. Feeling stupid all the time because you forget things, can’t finish sentences because you forget words or lose track of what you were saying, getting easily confused, critical thinking skills disappeared years ago! For a single, independent women who worked hard for everything she has this is devasting. I had no family or significant other to help me through the times of disability and worked the best that I could running my company every single day.
To those doctors who say chronic lyme disease doesn’t exisit…WHY would anybody create all the above in their head?

Comment by Carmen Velasco — December 20, 2010 @ 3:36 pm

The chronic lyme deniers are ignorant of research on borrelie bacteria that clearly show it can survive prolonged antibiotic exposure in vivo. Its a tough organism to kill.

Why is it surprising that lyme requires long antibiotic treatments anyway? There are other infectious diseases that also take a long time to clear. Leprosy, tuberculosis, and Q fever are examples. Typically, these are infections caused by fastidious, slow growing bacteria. Borrelia is slow growing and fastidious.

The fact that lyme skeptics heap such doubt on long antibiotic courses reveals how ignorant they are about treating such diseases generally.

E-manuel-I notice you didnt inquire to look at the papers I have assembled on HBOT. Like the Catholic church, you cannot be bothered to “look through the telescope” can you? HBOT is not fringe treatment. HBOT has 13 approved indications, and many more that are supported by clinical trials, including infectious diseases and lyme specifically. Its absolutely logical to use HBOT in treating lyme, because the organism is sensitive to oxygen and prefers to inhabit avascular tissues. Also, there are many anecdotal reports of HBOT being remarkably effective. If the medical establishment spent less energy denying the existence of chronic lyme, perhaps they would fund some bigger studies on HBOT for lyme so we could get some better data. Instead, its just more of the same denial and ignorance.

PJ Baker-those NIH trails were improperly performed and measured. They are a sham and the way they were performed exposes the bad faith inherent in the medical establishment. The insurance companies and government just want chronic lyme to disappear so they dont have to pay for it. Thats the ugly truth to this “debate”.

here is an establishment of ignorant, closed minded “professionals” whose money and reputation are threatened by the facts.

Comment by dan s — December 20, 2010 @ 5:02 pm

The chronic lyme deniers are ignorant of research on borrelie bacteria that clearly show it can survive prolonged antibiotic exposure in vivo. Its a tough organism to kill.

The fact that lyme skeptics heap such doubt on long antibiotic courses reveals how ignorant they are about treating such diseases generally.

This isnt a “debate”. What we have here is an establishment of ignorant, closed minded “professionals” whose money and reputation are threatened by the facts.

Comment by dan s — December 20, 2010 @ 5:04 pm

“E-manuel-I notice you didnt inquire to look at the papers I have assembled on HBOT.”

I notice that you didn’t bother to provide them in the first place. I don’t owe you some duty of secrecy for your Galilean insights.

Comment by E-manuel — December 20, 2010 @ 6:16 pm

Thank you for doing this series of stories. I have been there and know what the sufferers of this disease go through. All people who have been affected by this disease whether a patient or family member need to make themselves heard. With the Governor forming a task force and news stories running and bills being brought forth in the political arenas NOW is the time.

Comment by Joseph Scott — December 20, 2010 @ 6:55 pm

Title: TREATMENT OF LYME DISEASE WITH HYPERBARIC OXYGEN THERAPY
Authors: Fife, WP
Freeman, DM

Issue Date: 1998
Abstract: BACKGROUND: It has been shown that the spirochete, Borrelia burgdorferi is a facultative anaerobic organism which can survive in an oxygen partial pressure of 35 mm Hg, but not in an oxygen partial pressure of 160 mm Hg. When Lyme disease becomes chronic and the spirochete is sequestered in cells, the cells may protect the spirochete against the antibiotic which then is not fully effective. Spirochete survival after more than 15 years of antibiotic therapy is known. METHOD: Subjects were exposed to an ambient pressure of 2.36 ata (45fw) for a period of 60 minutes per treatment in a multiplace chamber. Treatments usually were administered twice each day for a total of from 10 to 125 exposures resulting in an oxygen partial pressure at the tissue level of approximately 200 mm Hg. RESULTS: The study included 90 subjects, all of whom had failed IV antibiotics some for as long as 5 years and who were continuing to deteriorate. All presented with Jarisch-Herxheimer’s reaction within 4 days of beginning HBO. All except 4 subjects showed significant improvement after termination of the treatment regimens. Aproximately 70percent continued to feel well after recovery while other had some relapse but showed further improvement with re-treatment. CONCLUSIONS: No cure is claimed by this treatment even though many who have completed the regimen remain essentially well or are much improved. It is clear that this treatment improves the quility of life after all other treatments have failed.
Description: Undersea and Hyperbaric Medical Society, Inc. (http://www.uhms.org )

Comment by dan s — December 20, 2010 @ 6:56 pm

This book has a chapter on using HBOT to treat lyme:

http://www.amazon.com/Textbook-Hyperbaric-Medicine-K-Jain/dp/0889373612/ref=sr_1_1?ie=UTF8&s=books&qid=1292889401&sr=8-1

Comment by dan s — December 20, 2010 @ 6:57 pm

And read this:

http://www.oxybiotech.net/files/Article-HBOT-Lyme-Fife-Study.pdf

Comment by dan s — December 20, 2010 @ 7:18 pm

That’s it? You’ve just been quoting the “13 indications” from someone selling HBOT? Oh, wait, I see that it’s an autism cure as well. You don’t sell home units, do you, Mr. Steinberg?

Comment by E-manuel — December 20, 2010 @ 7:42 pm

No I dont sell home units. The 13 medicare-approved indications include slow wound healing, burns, carbon monoxide poisoning, gangrene and the like. That reference was specific to lyme disease and HBOT. It says nothing about the 13 approved HBOT indications. That study is the only study that I know of exploring HBOT for lyme. it was done over 12 years ago, and there has been ZERO FOLLOW UP, despite the impressive results. If the medical establishment, CDC and NIH actually cared about lyme disease, they would be funding studies on HBOT and lyme.

No I am not quoting the 13 indications from someone selling HBOT machines, and I dont sell them. I BOUGHT one, and have been successfully treating a family member who has lyme with HBOT.

The fact that HBOT has 13 medicare and FDA- approved uses is easy to confirm.

Comment by dan s — December 20, 2010 @ 8:00 pm

Many thanks to Beth Macy and The Roanoke Times for your in-depth and balanced coverage of the Lyme disease crisis facing many residents of Virginia.

Here in Virginia Beach, we have over one hundred people affiliated with our local support group, with new members joining year-round. Lives are turned upside down by tick-borne infections like Lyme.

The current treatment paradigm clearly does not work: Undiagnosed patients slip through the cracks, and even those diagnosed often report persisting and debilitating symptoms after the recommended short courses of antibiotics. Worst of all, many folks never feel the same despite lengthy treatment. All this is evidence that Lyme is a serious threat to public health.

It should be noted that patients are not necessarily demanding more antibiotics. An organism as complex as Lyme may require a far more sophisticated treatment than mere antibiotics. Rather, patients are demanding REAL answers to this devastating health problem!

How refreshing it is to finally see an example of journalism “digging deep” into this untold story – thank you, Beth Macy! Please do follow-up reports in the future!

As patients, our time has come, and our stories need to be told. The need for comprehensive action to address tick-borne infections in Virginia grows more urgent each day. We look forward to seeing the Commonwealth provide leadership in this area through the Governor’s task force and other measures. May Virginia’s journalists also provide comprehensive coverage of this threat to their readership!

Comment by Joy Walker — December 20, 2010 @ 8:44 pm

Thank you, Beth, for having the courage for tackling such a divisive topic.

As for who (doctors) having the responsibility in Virginia for reporting cases of lyme to the VA department of health, page 14:

http://www.vdh.state.va.us/epidemiology/documents/pdf/regs.pdf

The language does not sound like it is optional….

Comment by Les — December 20, 2010 @ 8:46 pm

My husband contracted Lyme (we saw the rash, got an immediate diagnosis, but the doctors thought two weeks of doxycycline would take care of it, despite knowing he has no immune system).

I called the CDC and they insisted it was not contagious. They were wrong. When can we start telling the truth about this disease so we can spare people’s lives?

Many patients have family members who also have it, particularly spouses. It is similar to syphilis. It is present in all bodily fluids, including semen. How could it NOT be contagious?

Spread the word!

Comment by Debbie F — December 20, 2010 @ 9:42 pm

Thank you for posting the link: http://www.vdh.state.va.us/epidemiology/documents/pdf/regs.pdf

In reading this article, I noticed statistically that my county (Rockingham) was not included in having any reported cases of Lyme disease. Though, it may be a question of semantics because it is a coinfection of Babesia that shows up on laboratory work. In looking at the link, Babesia microti and Babesia WA1 are not even on the list to report. It makes me wonder if the co-infections of Lyme are not reportable? My husband and I are dropped from the posting of state statistics. I wonder how many other people are left off.

Comment by Michele — December 20, 2010 @ 10:03 pm

What nonsense to quote these 4 randomised placebo controlled trials as proof long term antibiotics can’t help anyone with chronic illness following a tick bite/s you know full well the considerable body of evidence questioning the validity of those trials.

It should be you any your ilk proving that patients are not improving on long term antibiotics. We know with our treating physicians whether we improve or not why we improve is your job not ours.

Comment by Joanne Drayson — December 21, 2010 @ 7:54 am

Thank you for such good coverage of Tick borne illness.

Sadly the problems over the IDSA discredited Guidelines has far reaching affects Worldwide.

I was fortunate in having a doctor here in the UK who realised my chronic illness of 4 years could be Lyme Disease becuase of a significant response on a chance course of antibiotics for a sinus problem. I had attended the surgery at times of bites, bulls eye rashes summer flu’ and migrating arthralgias before my illness became chronic all documented on her computer but never treated.(By other doctors in the practise)

The year before my GP suspected Lyme Disease another patient had presented with an EM and later positive serology, that led her to realise that Lyme was in the area of where I live.

Since my long treatment on antibiotics I have recovered from being housebound to normal life. My GP was unaware of the controversy over this illness until I started to enlighten her with research papers.

Now there have been many more cases treated successfully on long term antibiotics as well as cases in the early EM stage at my surgery. But also at several other surgeries in my locality.

But for the controversy many more doctors would no doubt use their clinical judgement in treating patients instead of feeling tied to restrictive guidelines whilst science is still evolving.

Comment by Joanne Drayson — December 21, 2010 @ 8:13 am

Thank you so much Beth Macy and the Roanoke Times for this wonderful article. I am in California, where, thankfully, we have a law that protects doctors who prescribe long-term antibiotic treatment, but that does not make the diagnosis or treatment any less controversial. This article validates so many of my experiences, and I was so pleased to see informed critical reporting on the situation.

I find it astounding that doctors are unwilling to use an open mind to make comparisons to other bacteria (such as TB) that require long courses of antibiotics, and to contemplate that a blood-borne disease that can be passed by ticks could also be transmitted in so many other ways. And I cannot understand why there is so little weight placed on the mountains of anecdotal evidence and patients’ stories. It feels to me something like prior centuries when the establishment disbelieved in the presence of germs at all, since they were too small to be seen by the technology of the times.

When we are dismissed by the medical establishment and by society at large, it makes this disease all that much more isolating. Your article is one step in bringing together the community to address this very real disease.

Comment by Rochelle P — December 21, 2010 @ 7:26 pm

I am 82 yrs, old and have had lyme for 10 years. At the present time am feeling very bad, have noticed my incontinent problem has greatly worsened in the past 2 months. Didn’t know that was a sympton until reading this email. I had the classic signs of lyme in the very beginning but my young Christian doctor (who is very smart) was not knowledgeable of lyme. After a sudden attack in a restaurant I could not sit up, my husband had to take me home with our food having just been served. We had Christian friends with us at the time and they came to our home with us. I had to lay on the bed chronically ill; my friend sat on the floor beside me and prayed. After about 3 days I got p the next day and discovered a perfect deep red ring on the inside of my left thigh about 4inches across with the inside of the ring being my flesh color. Mine was the perfect bulls eye but the dr. had never seen it before and didn’t know what it was. He took a biopsy which came back that I had chronic vasculitis. My husband was being treated at MCV in Richmond,Va. so we told the doctors about me while we were there. They were extremely interested in what was going on but dhad no idea what the problem was, so they told me if it happened to me again to immediately come back up there. There is much more to this story that should be told but I’ll stop here and say that my young primary doctor here in Chesapeake helped me to send blood to the Bowen Institute in Florida where my bacteria count came back off the chart showing I had the count as high ss they could count it. I was put on roceftin IV’S for two weeks in the emergency room of Chesapeake Regional Hospital. Even tho’ it’s needed I have not again been able to have the IV’s. A friend of mine in Florida had told me about the Institute and Dr. Whitaker who is familiar to anyone even slightly knowledgeable about lyme. This is a devastating disease robbing peop[le uncessarily of their life and there has been a big cover-up about this disease which hopefully is about to be brought to light. I may be reached at the above email address or by phone at AC757-549-0455 for further details. My address s 731 Whisper Walk, Chesapeake, Va. 23322.

Comment by Thelma "Timmie" Spence — December 21, 2010 @ 9:20 pm

Thank you for doing this piece. As a chronic Lyme patient and also an attorney like Taylor Albright, I feel the immense physical, emotional, and financial pain that all these patients have experienced. I was misdiagnosed by 14 doctors for over 3 years before I was told I had late-stage (aka chronic) Lyme Disease in July of 2008. I have been on treatment since then, and started IV antibiotics in March of 2010. I have lost my ability to work and function (in fall of 2007) and my entire life to this disease.

I know I will be able to work again, as I was only out of law school 2 years. I hope to be able to use my law degree to fight on behalf of Lyme patients…and would be great if Ms. Albright wanted to join me! I am sure a fighter like that will no doubt return to her career.

Had mainstream medicine been MORE educated about the symptoms of this disease and the fact that labs are notoriously false negatives, I most likely would have avoided the over $100,000 of debt my parents and I have gone into, along with years of immense physical and mental suffering that I cannot even explain in words.

My goal in life was to be a public interest lawyer, helping poor people and those who could not fight for themselves. I have now become somewhat helpless, ironically, and sit here fighting insurance companies, about my treatment that IS getting me better. Fighting with doctors. Fighting with family members, getting them (many of whom are mainstream doctors) to understand this disease is REAL and the treatment is often necessary. Every patient’s immune system is different, and everyone responds differently. It’s a long road, one that would have avoided had I been diagnosed when I went to the doctor back in 2006.

The Connecticut Attorney General brought an investigation AGAINST the IDSA for their bogus and corruptly-formed Lyme guidelines. Why do doctors have such a bias against this disease? We patients don’t enjoy spiking our bodies with intravenous meds and shots and supplements and going into massive debt; but we know what is getting us better. I know the fight will keep going because it has to for all these ill patients.

Comment by Mona — December 22, 2010 @ 12:02 am

An infectious read for me as a mother of a son who has battled profound neurologic and physical Lyme for over two years. As a Virginian who has moved to the midwest in search of a doctor who would treat beyond normal parameters, I am intrigued that there would even be resistance to the idea that Lyme exists in Virginia.

My son lost his speech, his memory, his ability to walk, his ability to reason, all but his life before we found the long road to recovery that we are still traveling.

I believe the grace of God has brought him this far and the tenacity of a brilliant doctor has sustained his life. Until we can return to Virginia and speak boldly to anyone doubting the existence of the disease or the need for prolonged treatment, please hear our voice and desire to raise awareness.

Lyme disease is alive and all too well in Virginia. It is NOT all in my son’s head. Well, actually it is all in his head and feet and hands and bones and organs and most importantly in everything this vibrant young man has lost.

Comment by Melanie Cox — December 22, 2010 @ 9:54 am

I am currently going through a 6 to 9 month treatment for chronic Lyme disease and I just wanted to say that even in the most infected of areas (Chester County, PA) doctor’s still deny the fact that there is such a thing as chronic Lyme. I have traveled a few hours to find a doctor and have been happy, but it’s almost impossible to find someone who is Lyme friendly. Never give up the fight! It’s a hard, long battle that is more debilitating than anyone could imagine. I’m 27 years old and have been suffering for over three years. I am hopeful about this treatment working, and I am very familiar with the stories listed above. keep your head up high and be like the Tiger…keep fighting! That is my motto too!

Life changes are not to be swept under the rug. We must recognize what is happening to our bodies and act upon them quickly. Second opinions are in my nature now. I never settle for a “gray” answer…It’s not even an option and it shouldn’t be for anyone dealing with any type of disease.

Keep the fight up! Educate and Eradicate!

Comment by Ali Schuster — December 22, 2010 @ 1:53 pm

I have never been one to wish something as horrible as chronic Lyme disease on even my worst enemies. After about five years of suffering from mild symptoms of emerging Lyme disease, (I didn’t recognize my symptoms as serious enough to consult a doctor) and more than a year of suffering with no diagnosis (and some mistreatment) after the illness began to get serious, and now a year of treatment by a qualified LLMD, I still have little significant resolution of illness. Attempts to find a local doctor interested in getting properly educated about LD and willing to follow up on the efforts of my out of state LLMD (also past retirement age), have been in vain. I now wish the ravages of chronic Lyme disease on some of these local doctors (especially those who want you to go on medications for psychosomatic illnesses) if that is what it is going to take to get them to treat Lyme sufferers in a manner other than as modern day medical lepers.

Comment by Marlin Burkholder — December 23, 2010 @ 1:11 pm

I was diagnosed in October with Lyme Disease. I took a 20 day course of Doxycycline. For some time I thought it was just my Fibromyalgia acting up and getting worse. I hurt so bad, was so tired, barely managed to get out of bed, headaches, nausea, lack of appetite. I live in Botetourt County, and I don’t see where there has even been a case noted here. I had several tick bites in the past few years, so have no idea when I was infected. While I was taking the antibiotics I felt better, A LOT better. I also am on Flexeril for the fibro. I went back to my doctor today, got a second course of antibiotics, and will return for lab work in six weeks. I am in pain now, it wasn’t bad after I finished the antibiotics, bearable lets say. This past week it has gotten much worse, and the past few days without Flexeril have been hell.It seems to ‘knock the edge off’ the pain, at least where I am able to function. I still find myself forgetting simple things, like what guacamole is made from in a crossword puzzle. I do the puzzles to try to keep my brain sharp. It doesn’t always work. I am hoping that this second course of antibiotics will help, and that I won’t have to go somewhere else when it is over. I know the pain and I feel for these people who have interviewed, and written here. My hands hurt all the time it seems and I type slower because they cramp up, I can’t stand to write longhand…So I will leave you with this: I hope the new task force does some good here in Virginia, God knows we need some help, and we need the doctors that are willing to cross the line!

Comment by Angie — December 29, 2010 @ 6:30 pm

Thanks go to The Roanoke Times for publishing this much needed article. I’m 57 years old and I recently saw a LLMD. We believe that I first had Lyme Disease at age 13 when I had an undiagnosed condition for 4 weeks that consisted of nausea, GI problems, severe headaches. I was in the hospital for one week and had a spinal tap, EEG, Upper and lower GI testing w/o any positive results. I have not felt the same since age 13. I could not keep up with my teen-age peers because of the fatigue, my grades declined because of memory loss, I noticed that I would always get worse when placed on antibiotics for multiple strep infections in my teens and 20s. I’ve had multiple several week spells of fevers, rashes…all without a diagnosis or a positive test. In 2006 I was diagnosed with Fibromyalgia. I thought that the medical professionals were “throwing me in the Fibromyalgia barrel” since testing came up negative. Several doctors would tell me that “this seems like Lyme disease” and one doctor in 2006 treated me for 6 wks w/ doxycycline…I got worse and then better…for a while. Recently my Pain Management MD recommended that I see a LLMD because he watched “Under Our Skin” and did some other research on Lyme Disease. He did this after I had asked him what he thought about the Lyme Disease controversy. Thank God for this Pain Management MD in Fairfax Virginia. I have seen a LLMD and was clinically diagnosed with Lyme, Bartonella and Babesia. My IGenex Western Blot came back Positive for Lyme and I’ve recently started treatment. I am having Herx reactions but I now have hope that treatment will help. I don’t wish to lose any more memory and other cognitive decline. I was getting lost in my own neighborhood while driving…How scary is that? Please continue the Lyme Awareness, prevention, and support our Governor with his mission for help for those with Lyme Disease~ thanks so much Great article and replies. I’m a healthcare provider~

Comment by Cathy — December 31, 2010 @ 12:34 am

NIH’s MedlinePlus website has a page on Chronic Persistent Lyme disease in which it describes the disease and gives its causes, symptoms, diagnostic tests, and treatment, including IV antibiotics. Here is an excerpt followed by a link to the webpage:

“Chronic persistent Lyme disease is a late stage of an inflammatory disease caused by Borrelia burgdorferi bacteria. It is also called Stage 3, or tertiary, Lyme disease…Some People may not be treated for Lyme disease because they do not have any symptoms or their symptoms are mild. Chronic persistent Lyme disease may develop months or even years after the Lyme disease infection…Even people who were treated may develop chronic persistent Lyme disease.”

http://www.nlm.nih.gov/medlineplus/ency/article/000669.htm

Comment by Janet — January 2, 2011 @ 7:54 pm

I should add, there is still plenty of disagreement between how long antibiotics should be used, but the existence of a very real condition called “chronic persistent Lyme” is not questioned.

Comment by Janet — January 2, 2011 @ 7:56 pm

The NIH has a webpage on the very real condition of Chronic Persistent Lyme disease on which it does not deny the existence. There’s still plenty of room for disagreement between the treatment recommended on this NIH website and that preferred by some LLMDs, but it’s clear that when this web article was written, NIH sanctioned the idea that a chronic form of Lyme disease is very real.

Comment by Janet — January 2, 2011 @ 7:59 pm

I am writing this on the very day I received a diagnosis of Lyme disease. I began my first course of antibiotics this evening. I have suffered many of the symptoms of this horrible illness for over 20 years. I have been misdiagnosed so many times I have lost count. It has been quite a battle and one I am determined to win. I now have hope!
It is a crying shame that most of the medical community simply throw Lyme patients in a “fibromyalgia basket.” Surely we, as victims of this terrible disease, can have our voices heard! I am so glad to see this article in the Roanoke times. The rest of us need to cry out louder, united, in a never ending echo!

Comment by MKopp — January 31, 2011 @ 9:13 pm

Lost in the Woods