The doctor of last resort
Most Western Virginia physicians side with CDC guidelines where chronic Lyme disease is concerned. But one area doctor risks it all to make her own path.
Dr. Cathryn Harbor is open to treating Lyme disease patients beyond the medical establishment’s guidelines — drawing praise from patients but criticism from other doctors. 'What’s difficult is to feel that I’m endangered when all I’m doing is the best I know how to do,” she says. KYLE GREEN | The Roanoke Times
By Beth Macy | 981-3435
LEXINGTON — Dr. Cathryn Harbor was volunteering at her children’s camp outside Charlottesville last summer when she noticed a startling phenomenon: In the span of one week, 10 of her 100 campers came to her complaining of flulike symptoms.
Each reported being bitten by a tick, and four were spotted with suspicious rashes. All 10 cases were a ringer — at least in Harbor’s mind — for suspected Lyme disease.
With their parents’ permission, she treated the children immediately, and then she called the health department to ask: Should we shut the camp down?
Harbor, 50, runs a solo family practice in Lexington. An avid cyclist, she rides her bike to work, which is a cottage nestled amid Washington and Lee University’s fraternity houses.
Raised in a family of academics and activists — her minister dad was a Davidson College professor, both parents were Vietnam War protesters and civil rights advocates — she had dreamed of curing world hunger before she realized she hated agricultural economics and went to theUniversity of North Carolina School of Medicine instead.
She hated medical school, too — but only because it seemed more about regurgitating facts than about complex, critical thinking.
“I don’t think the world works in multiple choice,” she says.
Her office opens onto a begonia-filled screened porch. During the warm months, her patients hear crickets chirping.
But the medical world beyond her doors is not so inviting.
In the past year, Harbor has become an outlier, a minority doctor who believes in the aggressive treatment of acute Lyme and its lingering effects, commonly referred to as chronic Lyme. It’s a position nearly as frustrating as trying to cure world hunger.
It’s so politically contentious that when she called the Virginia Department of Health to say she was swamped treating campers with acute Lyme, the response was: You can’t possibly have that many cases because the number of Lyme-carrying ticks in Western Virginia is insignificant and small.
Harbor wasn’t convinced, then or now. And she’s not standing by idly while researchers, scientists and Lyme advocates duke it out over the treatment of Lyme and the question of its latent effects.
Both sides agree on the existence of acute Lyme and its cause — a corkscrew-shaped spirochete, a bacteria that transmits Lyme when an infected deer tick feeds on a human. But this is where the camps part ways:
The medical establishment believes that acute Lyme is easily treated with a short course of antibiotics, with the exception of a very small number of patients who may get post-Lyme inflammatory illness or an immune system imbalance.
The outliers contend that chronic Lyme is a severe and potentially crippling disease, with a wide range of symptoms that set in when acute Lyme is not treated early or aggressively enough. They believe the spirochetes are virulent and hard to detect, corkscrewing deeply into joints and other collagen-rich tissues in the brain, eyes and heart.
They reason that the best regimen for late-stage Lyme includes longer courses of antibiotics, ranging from months to a year or more. But the establishment argues that long-term antibiotics are not only unproven, they’re potentially dangerous.
Meanwhile, sick people keep showing up at Harbor’s door, nearly 100 of them since February alone, some from North Carolina and Maryland. Most have already seen multiple doctors who have treated them for multiple illnesses. And yet their pains and complications persist.
In the face of uncertainty — and at great personal risk to her livelihood — Harbor has chosen to treat them aggressively for chronic Lyme, with a multipronged approach that includes prescribing more antibiotics than the Infectious Diseases Society of America and the Centers for Disease Control and Prevention recommend.
“But when you’re the doctor of last resort,” she says, “you keep trying other things.”
Roiling waters
It’s some of those other things that keep getting doctors in trouble. In September, 73-year-old Dr. Geoffrey Gubb shuttered his Eastern Shore practice after the Virginia Board of Medicine put him on probation and permanently banned him from prescribing narcotics. The investigation found that Gubb had treated more than a dozen Lyme patients with high-powered pain drugs including oxycodone without properly monitoring and documenting their conditions.
Upward of 30 doctors, most of them in the Lyme-riddled northeastern states, have been similarly sanctioned in the past decade. Chronic Lyme advocates have responded by lobbying four states to enact laws protecting doctors who prescribe long-term antibiotics.
But the volleys continue in point-counterpoint fashion, as Lyme spreads south and west from its New England ground zero. Among the establishment’s latest strategies, according to Northern Virginia Lyme lobbyist Monte Skall: Pick a so-called “Lyme-literate” doctor, go after his or her records and create a chilling effect on other doctors who dare treat outside the IDSA guidelines, considered the gold standard of care.
“A lot of physicians in our state are hesitant to get involved because of the medical debate that’s raging about this disease,” says Skall, president of the National Capital Lyme and Tick-Borne Disease Association. Her McLean-based group is pushing the Virginia General Assembly to reintroduce a Lyme bill in January that was shelved last year. She’s also a member of Gov. Bob McDonnell’s Lyme Disease Task Force, created in October to examine the diagnosis, treatment and public awareness of Lyme.
The CDC maintains that its Lyme protocol is not a mandate for clinicians. Echoing the IDSA guidelines, it recommends limiting antibiotic treatment with an eight-week ceiling but holds that the vast majority of Lyme cases are easily treated in two to four weeks.
Its case definition for Lyme is supposed to be used to confirm the spread of Lyme and then alert the public as necessary. But most doctors view the guidelines as “black and white and incontrovertible,” Skall says.
Dr. Jody Hershey, New River Health District director, says that doctors who follow the CDC’s narrow definition of Lyme fail to diagnose some patients with the disease.
Doctors who rely only on the CDC’s narrow case definition may “fail to diagnose some patients who in fact do have Lyme disease,” especially those with late-stage neurologic Lyme, says the New River Health District director, Dr. Jody Hershey.
Others, by treating patients for “probable Lyme,” err on the side of treatment, arguing that the “serious consequences for physical, cognitive and functional disability associated with chronic Lyme disease outweigh the risks of antibiotic therapy,” Hershey says — the essence of the controversy.
Gubb was an agnostic about chronic Lyme until 2005, when he treated a seventh-dan karate black belt who’d apparently been crippled by the disease. Later that year, Gubb himself tested positive for Lyme disease as well as a malaria-like co-infection called Babesiosis.
“You’ve got 400 doctors saying Lyme’s a big deal, and 400,000 saying you should forget it, especially from the big places like Johns Hopkins and Yale. So you tell yourself, well, how can 400 be right and all this other bunch be wrong?” says Gubb, a solo family practitioner and former emergency-room doctor.
It reminds him of the early-1900s saga over syphilis. In its advanced stage, it was originally thought to be a psychiatric disorder called “general paresis of the insane.” That shifted with the discovery of the syphilis spirochete and the invention of penicillin to stamp it out.
“If you want to go into [treating Lyme], you have to go into it knowing there’s a good chance that sooner or later somebody will file some kind of a complaint,” Gubb says.
On the other hand, had he not dipped his toe into the roiling waters of Lyme: “I’d probably be in a wheelchair by now.”
‘She’s being brave’
Harbor’s minority opinion was also borne of personal experience: A tick bit her at the same summer camp in 2007 as she picked wineberries along the Appalachian Trail.
She was so blase about her bull’s-eye rash — a telltale symptom of Lyme — that she used it as a teachable moment, showing it to her patients. But she’s come to believe that she was undertreated with a 10-day course of doxycycline, a common antibiotic also used in the treatment of acne and a variety of infections.
About the same time, several of her patients — including Roanoke-area civic leader and longtime Hollins University trustee Anna Lawson — told her about their battles with Lyme and brought her books on the subject.
Lawson, who says she believes she was undertreated in the wake of a 2006 tick bite, learned about chronic Lyme from Hollins art professor Nancy Dahlstrom, who was disabled for four years before being diagnosed by a Maryland doctor. Lawson went to him, too — at a cost of several thousand dollars, none of it covered by insurance.
But she also continued seeing Harbor, who was studying the disease and trying to figure out why her infectious disease colleagues were turning so many Lyme patients away.
Last winter, Harbor had her own aha moment when she came to believe that the cyclic headaches and neck pain she’d been blaming on bicycling, hormonal issues, the stress of being a working mom with three teenagers — anything but the disabling spirochete — were actually latent effects from her 2007 Lyme.
The headache felt like a drill bit going through her skull. She used topical muscle relaxants to get through the day and sought relief from massage and physical therapists. “I had no appreciation of how horrible it was to be in pain,” she says.
Rick Sidor, owner and physical therapist at Spine and Orthopedic Rehab in Roanoke, lives in South Roanoke County and said he was bitten by a tick in the mid-1990s. The former Syracuse football center is in his seventh monthof oral antibiotic treatment for Lyme disease.
By the time physical therapist Rick Sidor sought her out earlier this year, Harbor had established her own Lyme protocol. It’s an almost-echo of the guidelines adopted by the International Lyme and Associated Diseases Society — the minority doctor group that opposes the Infectious Diseases Society of America.
But long-term antibiotics are only part of her approach. She demands that her chronic Lyme patients exercise regularly and eat a diet rich in vegetables, whole grains and immune system-boosting herbs.
“She’s being brave just treating me,” says Sidor, who’s now in his seventh month of an oral antibiotic course — and says he feels better than he has in 15 years.
He believes he contracted Lyme in the mid-1990s after clearing vines from a pine tree in the back yard of his Southwest Roanoke County home, part of a newer development that’s rife with deer.
But Lyme was nowhere on Virginia doctors’ radar at that time, so his doctor treated him with an antiviral medication, which made him worse.
When he returned to the doctor a few weeks later, he was advised to see a psychiatrist, which infuriated him.
“I am not somebody that wants to lay on the couch,” says Sidor, 49, who played college football and runs his own physical therapy practice.
He was eventually diagnosed with chronic fatigue syndrome and, over the next several years, treated for bouts of pain, sleeplessness and a bone-crushing fatigue that some days made it hard to raise himself from a chair. He forgot things — the name of a popular employee, for instance — a symptom commonly referred to as “Lyme fog.” He’d go to make a pot of coffee, only to realize he’d just made one moments before.
“Last year I knew that 99 percent of America would not be at work the way I felt,” he says. “When you’re in the middle of it, it’s like the worst flu ever — on steroids — but only with this, it’s month after month, year after year.”
He wishes the naysayer doctors could feel the pain he feels. “How many others are suffering because these docs think they know everything?” he asks.
Here’s where Harbor differs from Gubb and most of her maverick colleagues: She will treat patients like Sidor with strong doses of oral antibiotics for much longer than the IDSA-recommended eight-week ceiling. But she seldom prescribes opiates, and she’s not comfortable overseeing intravenous treatment in an outpatient setting. The IV treatment may pack a stronger and more immediate punch, but it’s also more likely to summon the board of medicine to her door.
Besides, she’s not convinced that antibiotics can eradicate each and every spirochete, even though she sees the drugs as useful tools in her physician’s bag.
“I think antibiotics keep the spirochete numbers low enough that it gives the immune system a fighting chance, but I think it’s equally important to build up the immune system,” she says.
Infectious-disease doctors insist that post-Lyme complications are not caused by active spirochetes, but Harbor said she believes the science is uncertain and incomplete: “If you’re not embracing uncertainty and doing your best in the face of it, you aren’t being scientific.”
While some allege that Lyme doctors are charlatans profiting from desperate people who suffer from “affluenza,” Harbor insists she’s not getting rich. She spends 45 minutes with each new patient, has only one employee (a receptionist) and takes Fridays off to tend to family concerns.
“You’ll find me here at night sweeping the floors,” she says.
“What’s difficult is to feel that I’m endangered when all I’m doing is the best I know how to do.”
Dr. Muddasar Chaudry practices infectious disease medicine and internal medicine with LewisGale Physicians in Salem. Chaudry has been willing to treat outside federal guidelines on occasion.
‘Not my boss’
On the Lyme treatment spectrum, Harbor is more conservative than Gubb but more liberal than LewisGale Medical Center infectious-disease specialist Dr. Muddasar Chaudry — and far to the left of his colleagues at Carilion Clinic.
Chaudry will treat outside the Infectious Diseases Society of America guidelines on occasion, including for a nurse whose cognitive function was so impaired that “she had trouble staying awake during her interview with me.” He gave her almost three months of IV antibiotics — well beyond the guideline limits, but her condition was so dire he felt he had to try something. (He doesn’t know whether the patient recovered, he says, because she never returned to him.)
In another case, a Lyme-positive veterinarian he’d already treated for 12 weeks returned for further treatment. But Chaudry refused, saying his hands were tied: “Our practice is restricted by higher authorities, like the CDC.”
A year later, he took a call from a home-health agency asking him to approve an order for IV antibiotics for the same vet, and again he refused. The woman had been so desperate for treatment that she had already started her own IV, he says.
He feels sorry for such patients, and he hates it when colleagues say it’s all in their heads.
Of the 25 to 30 Lyme referrals he gets a year, many come from Carilion practitioners, Chaudry says.
That may be because the Carilion infectious-disease department has taken such a hard-line stance against chronic Lyme — its section chief, Dr. Thomas Kerkering, doesn’t believe it exists. (“So far there is no verifiable evidence that there is a condition called chronic Lyme disease,” he asserts.)
When patients beg for antibiotics, Chaudry tells them: “Antibiotics are poisons to bacteria, and they’re also poisons to our bodies, and I don’t experiment with poisons.”
It’s an argument Harbor finds disingenuous. “What do you say? ‘I’m sorry you’re in pain, and you weren’t in pain when you were on antibiotics — but the IDSA says I can’t give you anymore’? The IDSA isn’t my boss.”
She is ethically compelled to treat patients the best way she knows how. She finds tactical flaws with the IDSA-cited studies that dismiss long-term antibiotics as ineffective and dangerous. “The research questions are posed by people who set the study up so they get the answers they want. Nobody’s doing the studies I’d be interested in seeing. Nobody.”
Can antibiotics truly cure the ailment that advocates call chronic Lyme? At this point, Harbor says the answer is unknowable, shrouded in controversy and conflict of interest. Patients are the ultimate losers in the Lyme wars, she says, because the politics of treatment have trumped patient health.
“If there were a drug that treated chronic Lyme effectively, the guidelines would be paid for by the drug industry, and there would be a different narrative about Lyme,” she says.
About that much, she and Chaudry agree. Pharmaceutical companies don’t profit on short-term antibiotics — not the way they do on lifelong cholesterol and diabetes drugs — which hinders the development of newer agents, Chaudry says.
“It’s very expensive to develop a new drug, and if they’re not going to make money, they’re not going to work on it,” he says. “So the government has to fund the research.”
Tick ‘hysteria’
It all comes back to the ticks.
Harbor admits she’s scared to death of the bugs, partly because there’s been scant study of them in recent years. On vacation in Alaska last summer, she and her W&L geologist husband, David, joked that they’d rather deal with grizzly bears than ticks: At least with bears, it’s not so insidious; either you’re dead or you’re not dead.
Dr. Cathryn Harbor (right) meets with patient Robyn Zamorski during an appointment at Harbor’s Lexington practice. Zamorski, a Salem resident, drives to Lexington for treatment of Lyme disease because she said she cannot get adequate treatment closer to home. After a couple of months’ treatment with Harbor, Zamorski said she has experienced a noticeable improvement in her symptoms. Some doctors have been sanctioned for treating patients with therapies that go beyond established guidelines. KYLE GREEN | The Roanoke Times
The latest research done on Ixodes scapularis in the South was published in 2004 — in Florida, nowhere near the Mason-Dixon line. Yale University researcher Robert Jory Brinkerhoff collected ticks in Western Virginia in 2004 and 2005 as part of an Ixodes occurrence map of the eastern United States. Back then, he found no Ixodes from collection sites in Grayson, Smyth and Highland counties — the closest spots to Roanoke that were sampled. But overall, the study did suggest expansion of Ixodes south of its original New England and Upper Midwest hotspots.
“Where there used to not be [Ixodes] ticks, it looks like there are now,” Brinkerhoff says.
While the state’s public health entomologist David Gaines concedes that acute Lyme in Virginia will easily surpass 1,000 new cases this year — almost quadruple what was reported five years ago — he doesn’t want the public to fall prey to tick “hysteria.”
The vast majority of Southeastern ticks are auburn-legged lone star ticks, not the black-legged Ixodes — and only 10 percent of the Ixodes are known carriers of Lyme, Gaines says. But those numbers are based on old research, none of which was done in Western Virginia.
With no state funding for current research, Gaines has had to settle for some unscientific sampling of his own on his family’s Albemarle County farm. He didn’t spot his first black-legged tick there until 2006, but this summer he noted that of the 90 ticks collected, 25 were the black-legged Ixodes.
Those findings fit the suspicions of Old Dominion University scientist Daniel Sonenshine, who published the definitive text on the subject, “The Biology of Ticks,” in 1993. The last time he sampled ticks west of Tidewater was 17 years ago, when Sonenshine and his researchers found a single Ixodes at Fort Lee, near Petersburg.
“But everything has changed so much,” he says. “Everything we used to think was the case before global warming is so different that you hate to make prognostications based on old data.”
Though the first handful of confirmed Lyme in Western Virginia was reported in 2006, the numbers reached a critical mass in the summer when the Virginia Department of Health held a news conference to alert the public. In the Roanoke and New River valleys alone, 65 cases were confirmed this year.
That trend makes monitoring all the more imperative, Sonenshine says.
“This is a disease that’s been affecting almost 30,000 people a year, with a possible threat of long-term consequences if left untreated,” he says. “And the public is frightened of it. So this is not just some little rash you’re talking about.”
Harbor wants to know what’s going on with Lyme in Virginia, in her county, right now. “Because I believe people are getting it, and some of them are self-employed and hunters, and they can’t work anymore. They’re not going on unemployment or disability. They’re just screwed.”
If she has to put her neck on the line to get them treatment, well — no one ever accused her of being a conformist.
It bothers her that the medical establishment won’t entertain the possibility of chronic Lyme.
“It’s
position with my patients to start with: I’m hostile about what you think you have,” Harbor says.
It’s become such a sore point that some Lexingtonians have quietly gone behind their doctors’ backs to see her after fearing they were undertreated for Lyme.
“These are the people who worry me most — the ones who think they have Lyme and go to their doctor, who’s trained that if you think you have Lyme, you’re crazy.
“And fair enough, we do need to consider other things,” she says. “But why do they think the ticks out there aren’t carrying spirochetes? What’s their data source, and when’s the last time they checked?
“And where’s the health department in all this? It’s hiring Mr. Gaines to tell me there’s no Lyme on the AT when I’ve seen it in my campers.”
She may feel embattled, but Harbor says she sleeps well at night knowing that most of her patients are not just being heard, they’re also getting better — with or without the evidence-based research to prove why that is.
“I don’t like operating out of fear,” she says. “But the truth is, I’m more afraid of spirochetes.”
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This story is the third in a three-part series on Lyme disease. It first ran in The Roanoke Times on Tuesday, Dec. 21, 2010.
I can’t thank you enough for these articles on Chronic Lyme Disease.
After suffering for 10 years, seeing many specialist etc. being told I was depressed/anxiety, then
Chronic Fatigue Syndrome, Fibromyalgia. I had gone from being an active, working, traveling woman to being housebound, I knew something wasn’t right and I slowly was getting worse. One day I crawled into a doctor’s office knowing I was dying. The doc suspected MS and ordered a lot of testing . I had been tested for Lyme before (the standard CDC test) but this time I ask for the Western Blot. Well, it came back positive for Lyme.
Thank God I had a Dx but now what to do? This was one month ago and for now I am being treated with oral antibiotics and vitamins/supplements. Will my GP be able to continue long term antibiotics?
Its horrible the mental and physically pain you suffer everyday. Symptoms vary from person to person . I do not recall a rash or tick bite. One night I awoke with a vertigo attack, then flu like symptoms, mono symptoms I did test positive for mono, but the symptoms never left just kept getting worse.The vertigo would come and go but the horrible fatigue, the body aches to the bone,
the flu like feeling,depression/anxiety, headaches etc. have never left just seem to get worse each year.I have become mostly housebound and days bed ridden.
I am thankful I have a dx but now what? Will my regular GP be able to continue treating me? Doubtful..
Again, I am so thankful for these articles to bring awareness of this horrible disease. Hoping more doctors will become more aware and can give the long term treatments or whatever is necessary.
Phyllis Moore
Comment by Phyllis Moore — December 21, 2010 @ 7:52 am
Here’s another comment from reader Paula Pruett of Roanoke:
I was diagnosed and treated extensively (more than a year on I.V. antibiotics) for Lyme in the early 90s. I was 28 and in a wheelchair before I got a diagnosis. Local doctors refused to treat me aggressively, saying that I would “just have to get used to being in a wheelchair” and saying “there’s no Lyme disease in Roanoke.” I had to go out of state for treatment.
It seems not much has changed in 20 years. I have been suffering with almost the same symptoms again for the last five years. I can’t get back in with the doctor that treated me in the 90s because she almost lost her license for the “crime” of trying to help Lyme patients get their lives back so she has scaled back her treating.
Your article really touched me. I felt like I was reading my story. Thank you again for bringing attention to this most insidious and frustrating disease.
I tried to go back to work (I’ve been on disability since 10/08) and ended up making commitments that I’m having a hard time honoring. I’m hoping to wrap up a couple of my projects by 12/31 and start next year w/more time and energy to do personal things.
I look forward to reading the rest of the Lyme article and connecting with some folks that have been successful in finding treatment recently. After running into several brick walls regarding the Lyme, I checked virtually everything else including making two trips to the Cleveland Clinic. I’m still having numerous issues and was much encouraged when I saw your article yesterday.
I’m very suspicious that Lyme is the real problem, but had given up getting any help with it since I lack the resources to pay for significant treatment outside of my insurance coverage. Hope is the best holiday gift I could receive! Thank you!
Comment by bethmacy — December 21, 2010 @ 8:57 am
An area forestry consultant weighs in on his recent experience with ticks in the southwest Virginia woods:
I have read a couple of the Lyme disease articles online. As a forester I have spent my career in the woods and fields of Southwest Va. In December of ’06 in Pulaski Co. I found my first deer tick (at least that I realized what it was). The dog tick is not found in winter, but I find deer ticks year round. My dogs constantly have them without Frontline. These deer ticks are very common, but a new phenomonon. Furthermore, while our native dog tick just hangs on the outside of the skin, the deer tick bores into the skin and will bury itself in. Deer ticks are hard to remove if any time has gone by regarding the bite.
I have been bitten by several deer ticks and was tested for Lymes last year with negative results. My wife was treated for Lymes after developing the rash, but we never saw the tick. Her symptoms were minimal.
I just wanted to note that the deet tick is new in the last five years and prolific and year round.
Rob Morgan
Consulting Forester
Comment by bethmacy — December 21, 2010 @ 9:05 am
Thank you for writing an article concerning this controversial topic.
Being a transplant from southeastern CT, and getting my first tick bite near Lyme, CT, it has been quite the journey here in central VA, to find a doctor who is even willing to take me on as a patient! And, if they do, it is with a cautious, hands off approach.
I am bewildered and grieve over how the medical community can be so blinded by the truth. I applaud those who take on those of us suffering deeply. Also the journalists who will be objective and not just give us a soft view of this outrageous tragedy.
To think Doctor’s are being stripped of their license and ostrasized by their colleagues due to helping people who are suffering,shows the true heart of the direction of our health system.
Once again, thank you for printing these articles.
Comment by Karen Quigg — December 21, 2010 @ 9:25 am
If you believe Carilion’s thinking, then all these people are ‘fakers’. And the doctors who are attempting to treat them are charlatans.
Carilion dismisses these sick people as buckling under the stresses of life and having no real illness. (BTW, I would like to witness the conversation where Carilion tells the wife of former Delegate Fralin (who was mentioned in an earlier article) that it’s ‘all in her head’ and she’s not really sick.)
I wonder if it ever crosses the minds of the Carilion doctors that these large numbers of ‘fakers’ only seem to live in areas with large numbers of deer ticks? Parts of our country without deer ticks don’t seem to have any such ‘fakers’. Hmmmm. Despite such an amazing ‘coincidence’, it appears quite clear that Carilion will continue to dismiss these ‘claims’ of illness as merely a coincidence.
Dr. Kerkering of Carilion was quoted as saying “anecdotes squared do not equal data.” I wonder what he thinks of anecdotes x 1000. My guess is that, sadly, Carilion will continue to craft an argument that denies care to these sick people.
Comment by Arizoner — December 21, 2010 @ 10:09 am
Thank you so much for this article and the series. I know from personal experience how real and debilitating Lyme is. I am now 38. I was first diagnosed at Rockingham Memorial Hospital in Harrisonburg, VA when I was 11. I was a very happy and active child. One afternoon my ankles started hurting, by evening I couldn’t walk, by the next morning I couldn’t move at all and was spiking a high fever. I was hospitalized. Mine was a rapidly progressing case–within days I lost my hearing, developed a Bells palsy, had severe neuro issues, heart, liver, you name it. What saved me was a young woman who had been a the hospital the summer before who had had Rocky Mountain Spotted Fever, another tick-borne illness. Even though my titers were negative for this illness, because it looked so similar to my symptoms, I was started on intraveineous antibiotics. Within a year I fully recovered although it was a long, slow journey, learning to walk, etc. A year later when my blood was sent to the CDC, we finally had an answer, the never-before-heard-of “Lyme Disease”. 1983. I went on to lead a very healthy adolescence, winning sports awards. When I became pregnant at age 27, for the next 9 years I experienced one undiagnosable health issue after another, often feeling so ill I thought I would die and the doctors were stumped. The only thing that seemed to make me well was one round of antibiotics after another, for years. “Chronic Lyme” was never discussed but I always wondered if those spirochetes went to work again in my body when my immune system was sepressed with pregnancy (twice). I am now basically healthy. I am grateful each day for life and health. I don’t know what the answer is or how long I will be healthy, so I live each day just in gratitude. I do everything I can to support research efforts into Chronic Lyme. I know many others now who are experiencing Lyme beyond the acute stages and beyond the typical rounds of antibiotics. They suffer terribly and the financial cost without insurance to cover this is astronomical. I deeply hope for the day when research catches up to this severely unknown and misunderstood disease.
Comment by Susan Landes Beck — December 21, 2010 @ 12:09 pm
Do these Carilion Doctors really believe the ticks fall off before they cross Roanoke county line? Get a clue ,there are ticks everywhere!! There are thousands of us suffering! I live in the NRV and been struggling for 4 years. I honestly dont know if antibiotics is the answer but when you are sick as I am ,you will do whatever it takes to become a good mom again! Doctors such as the Carilion that say its “all in our heads” will probably keep believing that untill they or thier families get sick.There certainly are alot of sick people ,all different race,religion,male ,female,and young children, Some are dying from Lyme disease! So its pretty far-fetched to say its all in our heads. I would like to know if that Carilion doctor would be willing to get a blood transfusion from a lyme patient since he feels so sure we are not really sick??
Comment by sickoflyme — December 21, 2010 @ 12:39 pm
From Botetourt County reader Rick Bessette:
Beth,
My wife and I read your Sunday article on Lyme disease with great interest and I felt I had to relate our experience to you. We were living in Maine when my wife’s problems began. It was New Years eve 1986 when Tina sat up in bed and complained that she had a buzzing in her ear and could not hear from that ear. She went to the doctor and was diagnosed with sudden nerve deafness and nothing could be done. Over the next few years she struggled with bouts of exhaustion, joint pain and swelling but no one could diagnose the problem. One doctor even blamed it on her menstrual cycle. In 1989 we were transferred to Massachusetts. The tiredness and joint pain continued until one of her knees swelled up to the size of a grapefruit. She went to a doctor who drained the knee and prescribed steroids to treat her symptoms. One week later the knee swelled again. Tina went back to the doctor who repeated the same treatment. Our neighbor, who is a nurse, became concerned and suggested that we go see an arthritis doctor who she had great confidence in. We made an appointment with Dr. Todder in Johnston, R.I. He listened to the story of what Tina had been through over the last five years and said he believed she had Lyme disease. We were shocked! He put her on oral antibiotics right away while we waited for the blood work to come back from the lab. Sure enough Tina had Lyme disease. She never had the telltale rash or even remembered being bitten by a tick. Thank God for this doctor! She went through another round of oral antibiotics when the first one was not enough. Still she tested positive for the disease. Finally she was given intravenous antibiotics twice daily for about a month. This finally did the trick. The symptoms went away and hopefully will never return. Unfortunately the deaf ear will be with her forever. This is a very dangerous disease and should not be taken lightly. Tina is living proof that heavy doses of antibiotics is the right treatment when the disease has progressed beyond the initial stages.
I hope this information helps,
Rick Bessette
Comment by bethmacy — December 21, 2010 @ 12:53 pm
What a sad and pitiful day for Carillon Hospital to read the comments from Dr. Kerkering regarding lyme disease. I live 6 months of the year on Martha’s Vineyard and that community has struggled with lyme disease and are on the forefront of manging the health of it’s victims. Thoses people are not depressed or stressed out by life as suggested by Dr. Kerkering, they simply have lyme disease and are being streated by competent, intelligent physicians that can work threir way thorugh unusual symptoms presented by patients. Does Carillon accept Dr. Kerkering’s opinion that he generally does not see patients with lyme disease because he can’t do anything for them?!Thank goodness I have Anthem insurance and I can go to any hospital in any state because it is clear that VA does not know how or is willing to help patients with lyme disease! Dr. Kerkering also called physicians in Manhattan, Charlatans!Carillon administration, aren’t you embarrassed by this??!!
Comment by Linda Swanson — December 21, 2010 @ 1:06 pm
Lyme and its co-infections have all the ingredients needed to create a medical nightmare: An emerging illness with bizarre symptoms, completely unreliable tests, and a powerful medical organization, the Infectious Disease Society of America (IDSA ), up to its neck in anti-trust investigations and conflicts of interest that uses its formidable clout to bully physicians into ignoring a legitimate, serious illness.
The IDSA’s board members, with incestuous ties to corporations owning patents on the Lyme bacteria, have chosen to ignore stacks of medical research that document the persistence of Lyme beyond the few weeks of antibiotics they claim is the cure-all for tick-borne illness. However, with the IDSA as the prime advisor to the NIH and CDC, it is no wonder that physicians who are trained to look to authorities for advice feel they can’t ignore this trifecta of influence.
To resolve this cognitive dissonance, however, one need look no further than the 1980 Bayh-Dole Act that allows corporate interests to patent bacteria among other things. IDSA Board members have financial ties to companies holding these patents. One need only follow the money from there to understand why the IDSA resembles a modern day, deeply cynical version of the Flat Earth Society. As new illnesses emerge in the future, this fiasco represents a model for disasters to come.
In the meantime, double-think among doubters is stunning. Consider the words of Dr. Chaudry quoted in this article who says, “Antibiotics are poisons to bacteria but they’re also poisons to our bodies and I don’t experiments with poisons.” Of course you do, Dr. Chaudry, you experiment with poisons every day and so does every physician in the U.S. Physicians “experiment with poisons” every time a teenager is prescribed antibiotics for acne (for a decade or more), every time they treat a sinus infection with antibiotics without knowing the exact bacteria needing treatment, every time chemo is used (sometimes with horrific side effects) to treat cancer or other illnesses. Those with tuberculosis and malaria are treated for years with the “poisons” of antibiotics. Why is it beyond the realm of possibility that other illnesses don’t behave with the same persistence?
The real experiment with “poisons” is letting thousands of patients endure the effects of poisons secreted from bacteria and parasites that effect every organ and every tissue in the body. Somehow Dr. Chaudry and others are tone deaf to the destructive force of these poisons that leave people unable to work or function.
Finally, if insurance companies think they are saving money by denying patients treatment, they should think again. Sick patients wander from doctor to doctor running up bills for MRIs, CAT scans, physical therapy, endless blood work to diagnose their symptoms when relatively cheap antibiotics can bring Lyme, even persistent Lyme and its co-infections to an end. Lyme specialists like Dr. Harbor who are using proven antibiotic treatment are saving insurance companies money. Virginia’s taxpayers also come out ahead because they are not funding disability payments for those with untreated tick-borne infections who can no longer function.
It is the IDSA that is the outlier, not the physicians with insight and a firm grasp on the reality of the confounding and serious nature of Lyme and its co-infections. It is surprising that more physicians don’t revolt on the grand scale.
Comment by sherrill56 — December 21, 2010 @ 2:16 pm
There is a growing body of scientific evidence demonstrating persistance of infection after standard antibiotic treatment, the importance of multiple tick-born infections in the sickest patients, and the significant differential in virulence of the more than 100 subspecies of the Lyme bacteria B. burgdorferi. As a result the one-size-fits-all treatments protocols espoused by the IDSA treatment guidelines are not appropriate for a significant percentage of these patients.
The greatest shame is there are physicians who are developing successful treatment strategies that are restoring many of these very ill and complex patients to health. Detailed case histories of successful treatment by expert clinicians would carry a lot weight in any medical field except it seems for Lyme. The four NIH trials mentioned in the article did not actually test the treatment strategies that LLMDs have found to be successful in treating patients with late stage Lyme, many of whom are also infected with tick-borne co-infections. Still the Fallon trial demonstrated improvement in severe pain and the Krupp trial demonstrated improvement in fatigue. It is the politics of Lyme disease documented in this article that is preventing the clinical trials that would validate many of these treatment strategies.
I don’t believe that LLMDs have all the answers and I examine critically each of my doctor’s suggestions for my daughter’s treatment. There is a HUGH need for research dollars to further examine the clinical treatment all tick-borne infections. Still I believe that the LLMDs that have taken on the care of my daughter are light years ahead of the naysayers in solving this puzzle. Instead of being maligned, their years of clinical experience in treating the most difficult patients should be respected and it is their expertise that should be the basis for further clinical trials.
Comment by Karla Lehtonen — December 21, 2010 @ 2:23 pm
I am a scientist (in the process of changing into the field of nurse midwifery) who is currently staying at home to care for my daughter who has been ill for over a year with multiple tick-born diseases, Lyme, babesiosis, bartonella, and mycoplasma pneumonae. I have taken the time to explore the Lyme literature and I can tell you that many of Dr. Kerkerings statements are not supported by the medical literature.
Some of Dr. Kerkering’s opinions that don’t hold up in the light of scientific research include reliance on the CDC’s two-tiered testing for a positive diagnosis. A recent study performed at John’s Hopkins University (Coulter et all 2005) demonstrated that the standard two-tiered testing returned false negatives in 65% of patients in the acute phase of Lyme disease and in 23% of patients in the convalescent phase. Until better tests are developed Lyme disease must remain a clinical diagnosis and it is not ethical for physicians to deny diagnosis based on negative serological testing.
The Four NIH sponsored studies on chronic Lyme disease documented the extreme disability experienced by these patients. They were found to have pain equal to that experienced by post-surgical patients and fatigue levels similar to patients with congestive heart failure. These patients are clearly not experiencing the occasional bad day as presumed by Dr. Kerkering.
Comment by KLehtonen — December 21, 2010 @ 2:59 pm
There is a growing body of scientific evidence demonstrating persistance of infection after standard antibiotic treatment, the importance of multiple tick-born infections in the sickest patients, and the significant variability in virulence of the more than 100 subspecies of the Lyme bacteria B. burgdorferi. As a result the one-size-fits-all treatments protocols espoused by the IDSA treatment guidelines are not appropriate for a significant percentage of these patients.
The greatest shame is there are physicians who are developing successful treatment strategies that are restoring many of these very ill and complex patients to health. Detailed case histories of successful treatment by expert clinicians would carry a lot weight in any medical field except it seems for Lyme. The four NIH trials mentioned in the article did not actually test the treatment strategies that LLMDs have found to be successful in treating patients with late stage Lyme, many of whom are also infected with tick-borne co-infections. Still the Fallon trial demonstrated improvement in severe pain and the Krupp trial demonstrated improvement in fatigue. It is the politics of Lyme disease documented in this article that is preventing the clinical trials that would validate many of these treatment strategies.
I don’t believe that LLMDs have all the answers and I examine critically each of my doctor’s suggestions for my daughter’s treatment. There is a HUGH need for research dollars to further examine the clinical treatment all tick-borne infections. Still I believe that the LLMDs that have taken on the care of my daughter are light years ahead of the naysayers in solving this puzzle. Instead of being maligned, their years of clinical experience in treating the most difficult patients should be respected and it is their expertise that should be the basis for further clinical trials.
Comment by KLehtonen — December 21, 2010 @ 2:59 pm
I can’t say when I was first infected with Lyme disease. I ride horses, I show and groom dogs, I camp. I love the outdoors and the woods. Tick bites were just a part of summer. In 1995, in North Carolina, I came down with horrific fatigue and was treated for 6 mths with antibiotics. Lyme was suspected and doxycyline for one month was part of the arsenal but the test came back negative and the doctor never could identify exactly why I was sick. He just kept changing the antibiotics in hopes of hitting the right one. I got better but soon developed weekly migraines, stiff neck issues, 5 root canals, terrible memory recall and hearing loss. This continued for 10 yrs and no one ever suspected lyme disease. I just dealt with each symptom and kept living my active life. In 2005, I was suddenly struck with rheumatoid arthritis. I had it everywhere and within 5 mths had to quit work and was housebound. I hit the internet looking for answers and found an infectious connection to RA. It had 50 years of solid research and treatment success by a rheumatologist at Georgetown University and his treatment was longterm minocycline in very low doses. This treatment had a 70% success rate. Yet my rheumatologist is Roanoke yelled at me when I suggested I might have infections from lyme, strep and mycoplasma. My medical history of one infection after another meant nothing to him. He refused the tests but did prescribe the minocycline. I went in search of doctors and dentists who would help me uncover the cause/s of my RA.
It took a year to find a rheumatologist who believes in infectious causes to RA. When she ran the tests, I had all 3 of the ones I suspected plus I had babesiosis, H. Pylori and chlamydia p.
I had 3x the highest acceptable limit of lead and I was highly elevated in mercury. I immediately had my remaining 3 amalgams removed.
My arthritis was described as “explosive” and one of the worst cases my rheumatologist had seen in her 15 years of practice. Yet today, I am mostly symptom free. I am again working and riding horses.
I consider myself one of the lucky ones. If I had taken the immune suppressing drugs standard for rheumatoid arthritis and other auto-immune diseases I believe I would be wheelchair bound or even dead. With all the infections that were overwhelming my immune system, what would have been the result of suppressing it instead of suppressing the bugs?
This makes me angry at the field of rheumatology. They dismiss infectious causes and if I had failed under their treatment, it would have meant nothing to them. I simply would have been a “non-responder”. This is not poor medicine, that is criminal.
Why are physicians who treat with longterm antibiotics under attack but rheumatologists who treat with far more deadly medications considered to be reasonable? I am not an isolated case of improvement using antibiotics and nutritional therapy. There is a whole community of people just like me and they can be found at http://www.roadback.org.
Read the information provided with methotrexate, Enbrel, Humira, etc. They all say in bold print that you can DIE from their drug and that people have DIED from their drug. Yet these immune suppressing drugs are the standard treatment and they are used for the remainder of the patient’s life. If you die while on these drugs, no one cares. No one is pulled before the medical review board.
The first rheumatologist refused my request to test me for these infections in spite of 50 years bonifide research, in spite of my medical history and in spite of my request for the test. I could have died and he would just keep on practicing bad medicine.
Our medical system is barbaric.
Comment by Susan Pyne — December 21, 2010 @ 3:02 pm
Thank God for Cathryn Harbor. She was definitely my last hope.
C.S. Miller, group facilitator Buena Vista FMS-CFS-MCS Lyme Network, Buena Vista Va.
Comment by C.S. Miller — December 21, 2010 @ 3:03 pm
Dr Cathryn Harbor is my Heroine!!!
Comment by Joe Malloy — December 21, 2010 @ 4:30 pm
From Christiansburg reader Sandra Young:
Dear Beth,
I have been reading the articles in the Roanoke Times. I was bitten by a deer tick on my left knee October 18th. I had seen a Dr.Oz program earlier about tick bites, and when I developed flu like symptoms, I went to my family Dr. November 4th and was put on Doxcycline. Saturday November 6th the Bullseye rash appeared. My left kidney, my left breast, and my right ear all have been hurting since Nov.4th. I have been blood tested 3 times for lyme, first two were negative, the third was the Western test and I have not received the results. I have been on two more but different antibotics. I still feel awful.
I had never been late for work, and had never missed a day until Dec14, I have been out for 6 days. I need to work to pay my bills, but how can one work when you feel like you have the worse case of flu ever. The CDC and Gov. McDonald need to realize this is so very real, and I pray that none of the unbelievers get this disease. thank you for what you have done to bring this to the public. Any more info would be appreciated.
God bless, Sandra Young
Comment by bethmacy — December 21, 2010 @ 6:24 pm
With all due respect Beth, as a Lyme sufferer myself, I don’t see that this much material in your article really dealt with the heart of the matter. It requires much more than you offered.
While I appreciate you for having the courage to write about lymes, the article in my opinion was shallow. It appeared that you did not want to step on any toes. I understand this, but please hear me out as I communicate it as a lymes sufferer. People like me who are suffering daily, have no job and no money need an aggressive article because of the political nature surrounding lymes.
I understand an unbiased opinion is what you put forth, but the doctors who say there is ‘NO chronic lymes disease’ should not be allowed to comment if their research falls on the heels of shoddy facts.
If I want the facts of Christianity it would not be in my best interest to go to people like the former David Koresh right? Nor would it be wise to go to people who write against Christianity. To learn about Christianity I should be going to a genuine Christian.
But, that is what you have done in going to doctors who do not deal with people who suffer with lymes on a daily basis. You have referenced doctors who reference the IDSA as if the IDSA has credibility. This is a problem due to the group being disbanded by the Attorney General of CT.
Maybe some doctors are just ignorant about the matter, but I am talking about hostile doctors with an agenda. Let me tell you how I can justify saying that their opinion is worthless. If it can be shown that the IDSA is corrupt, and the doctors who argue “there is NO chronic lymes” base their opinion upon the research of the IDSA, then ipso facto, they too are corrupt in their science and their reputation should reflect this.
If you will allow me to show you, I will show that the Attorney General of CT has investigated the IDSA and found corruption. This needed to be brought out for your readers. For example, the following findings can be located on the CT Attorney General website.
Attorney General Blumenthal’s findings include the following:
*The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
*Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
*The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;
*The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;
*The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
*The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy…..
http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284
These finding are not the ramblings of an activist. This needs to be brought out. Besides, activism for a cause does not make it legitimate. We are dealing with sick people here and the reality is, we are not getting help. Attorney General Blumenthal said a person was dismissed for dissenting. What does that tell us? The board was made up of people who had their hands in the insurance cookie jars. Are we not tired of this corruption or do we role over and play dead as they live their lives wealthy while lyme disease patients suffer?
This is a very political hot potato and thus, I have not been able to get the right help. I have no money. There are no activists helping me. I am on my own. You may say some insurance covers it, but not MY insurance. They have fought all the way through my journey of suffering. In fact, when the new lymes doctor was hired by Carilion, my doctor sent a request to have him examine me. I was told by their office that he reviewed my file and would not even give me the courtesy or the consideration of a visit. Why is this wrong? If a doctor who saw me is not Lyme literate, then that doctor would not know what to look for and document. So of course the file would be small. This arrogant doctor would not even see me. With doctors like this, nobody has hope.
It reminds me of the movie years ago with William Hurt who was a rude/mean doctor with no sympathy toward patients. That is, until he became the cancer victim himself and he found out what it was like to be treated by doctors with no doctor ethics. That is-to treat ALL patients and treat them as if they were made in the image of God which means we have dignity and worth, even if we don’t drive a Mercedes Benz. I do wonder if I was a doctor complaining of lymes, would I then be able to get an appointment with this Carilion doctor? I believe with all my heart I would.
Is it possible that doctors are biased and “bought” by others? If so, who do we look for when it comes to the facts of lymes? If the researcher or doctor is biased, should we be asking their opinion regarding the facts? I do not think so.
Chronic lymes does not stand or fall because someone says it does or does not. The question that must be asked is whether or not there are real live people out there suffering in Roanoke? And secondly, have people been misdiagnosed because of an arrogant doctor who wont budge on his/her position regarding lymes? I have fibromyalgia according to two different doctors. I wont get into the multitude of problems I have, but any caring doctor would admit I am sick and there is a problem. But it ends there.
Science is not the standard. Some scientists say we are evolved and the others say we are created. Who is right? How can two scientists have completely different opinions? It is called, a bias. A presupposition regarding a matter. Who is right and who is wrong? There are a multitude of other areas in life that have we divisions over, and people on both sides of the aisle are not stupid. But, how do we reach the truth if opinions and poor research and money are factors?
So, what facts are out there regarding lymes? How about the patient? Have you talked to patients who are now able to work again? Oh how I wish I could go back to work! Have you talked to doctors who spout “the IDSA is the final say in the matter” or do you talk to the people suffering?
Are people lying when they say they have suffered as a result of a tick bite? Does that count for something or do we trust the people in white coats who think they are little gods, insistent that lymes is not chronic? “I am a doctor! How dare you question me”. If I say there is NO chronic lymes then you better believe there is no chronic lymes” says the biased doctor.
Has anyone talked to Noreen Turyn from WSET who is living proof of chronic lymes? Do actual people count or do we just go by the ramblings’ of doctors who don’t have honest facts- only hearsay. They have only the opinions of others. They trust that the government has all of the answers? Really? The same government permits pills (that have been used as tools for individuals to take their own lives) to help people with depression.
What is my point? Anti depressants are ok to dispense if the patient has medical symptoms, but you have no medical proof that the person has a chemical imbalance do you? Can a single blood test show PTSD or do they use a number of factors to prescribe their pills?
It seems to me that they collectively put the picture together to determine a person may be mentally sick. But, that is not the same standard when it comes to lymes. Why is lymes a different standard?
After over 20 doctors, only two have taken all of the facts collectively and diagnosed me. They dont just write a script and send me off like the others. I have been diagnosed with pre Alzheimers, fibromyalgia, PTSD and a slew of other issues. But they have done nothing!! It is in my head say some doctors.
I recently saw a doctor who said I had runners knee. That’s odd since I cant run and I stay at home most every day lying down. How does the average person get runners knee? Ask them and they will tell you because of running.
I saw another doctor who said I have diastasis recti. He says it is common with babies and pregnant women. I am neither. Is this another issue that should be looked at collectively?
Nobody questions that my gall bladder was taken out, my liver is enlarged, I have severe fatigue, my blood is coming back with several problematic issues, etc. Do we have any doctors in Roanoke? I have not found any. The only doctors I have known should all carry a pez dispenser so they can dispense pills. One doctor said I had very high cholesterol. She sent me off with a pill months ago and has never seen me since. Does my high cholesterol concern her? My dogs get better treatment than I do.
I AM sick every day. I HAVE been bitten and did have a bulls eye type bruise back around 1999. But, the tests (almost 8 years later) came back and did not meet the CDC criteria. And, if you mention lymes to a new doctor you muddy the waters. Like I said, they send you off with a pill and a smile as their wallet gets fatter by doing nothing.
I have tried for over five years to get disability to pay for the picc line and doctors visits, but the judge does not think I am sick. Even though the doctors notes do not reflect “lymes” they do detail a host of other issues and collectively, would tell any normal person that I have a problem. I have not worked since 2005. I was fired from the last 2 jobs because of “health issues”. I even have the letter from my last boss that said- he is concerned about my health. I have lost both of my retirement plans because of this disease.
Beth Macy, you need to show the facts discovered by the CT Attorney General regarding the IDSA. The AG had discovered that the doctors making the laws are also sleeping with the insurance companies. Houston we have a problem! Does that matter when it comes to the politics of this disease? Why are facts like this not included in your research? http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284
What about the film “Under Our Skin”? What about the woman who they follow in that film? Is she just the “activist” who has a difference of opinion or is she proving the doctors to be liars?
What about the doctors interviewed in the film? There were two types of doctors interviewed; the knowledgeable ones who work with lymes patients daily, but they also interview the idiot/ignorant doctors who show their biased opinions when they act like parrots, resting their case upon the CDC and the IDSA.
I am a man who is slowly dying because the local doctors in Roanoke would rather play politics than doctor. The ones parroting the govt are the ones you should not be focusing on. Talk to the doctors of the people who are suffering! Tell people about the AG in CT who uncovered such a disgrace of doctors and insurance companies in bed together.
It does my heart glad to see Taylor with a picc line receiving the right medicine. But, that is not the norm. It takes money for the picc line and not all of us have that luxury. I have stage 3 lymes. I was on antibiotics for 5 months and it did not even budge the little booger. I need 20 grand for a picc line. Insurance wont cover it. Taylor is blessed to have the money.
People need to know how smart this spirochete really is. Did you tell them how it forms a cyst around itself to protect itself? Did you research the little guy and tell people how it leaves the bloodstream and then drills into the tissues?
The worst fear I have is that once Obama care is implemented, those with lymes will see a much darker future. And, those who get lymes will wish they had not.
I can only hope that a doctor or the loved one of a doctor will get lymes. I don’t say that to be vindictive or spiteful. People with no apathy NEED to get a crash course. They need to go through the system to gain compassion. Maybe when someone important to them gets lymes, and another doctor says it is in their head and gives them a pill, things will change because someone with money and power are now on the other side. When a judge gets lymes and finds out how debilitating, incapacitating and unbearable it is, maybe then they will be more inclined to help see the sick get help.
I do not mean to be harsh toward you Beth. But there is so much that needs to be said so the public knows what to expect from the medical community. You WILL NOT get the help you need from doctors or insurance. It will really suck when your family and friends do not have a clue about how you feel each day. I can tell you that it is a lonely road and it gets worse day by day.
I wish I were getting the help I need so I could be an activist with facts. The politics NEED to be exposed! I hope McDonnell is sincere.
Comment by Moshe Ariyeh — December 21, 2010 @ 6:54 pm
You took the words right out of my mouth!! If the Carilion doctor feels so confident and comfortable that there is NO such thing as chronic lymes, he, his family and his friends should have no problem taking blood from someone who claims to have chronic lymes. That is called putting you money with your mouth is. In fact, since Carilion feels that this man has the wisdom of a god, they too should stand behind him and also be willing to take a blood transfusion.
Well said sickoflyme!
Comment by Moshe Ariyeh — December 21, 2010 @ 8:04 pm
God bless Dr. Harbor, her forward way of thinking is exactly what is needed. Chronic Lyme exists. In the article it was stated by one person “I wish they could feel the pain”. That is what I have been saying for a long time now and I always wondered how the pain could be duplicated for others to feel. I finally thought of one way but it really only imitates one symptom. For those who don’t believe try this. Attach two wires to a rheostat. Hold one exposed wire in your fist and place the other under the bare sole of your foot. Have somebody slowly turn up the electricity until you feel the tingling begin. Keep increasing the intensity until it actually starts to hurt. Now hold the wires while energized seven days a week for months at a time. Wow – you just experienced only one of the symptoms. Can’t hold on anymore? Wimp, theres nothing wrong with you, you don’t look like your sick, it’s all in your head. Those who do not suffer with this disease have no idea of the impact on lives. Doctors who do not believe – stick your hand in jar full of infected ticks and let them bite you. Then when you start to feel the symptoms go to any specialist you can find and let them tell you there is nothing wrong with you. Go ahead.
Comment by Joseph Scott — December 21, 2010 @ 8:05 pm
An area veterinarian speaks out about Lyme disease:
Dear Ms. Macy,
Absolutely fabulous article on Lyme disease. For incidence and prevalence, you should contact local veterinarians. We have been treating Lyme disease in SW Virginia for almost a decade as far as I know. We have in-house ELISA blood tests that detect antibodies to Lyme that we use routinely. Although exposure to Lyme does not necessarily mean that the animal has Lyme disease (ie the symptoms) and does not necessarily require treatment, these dogs are getting exposure to the bacteria from somewhere, right? And probably any practitioner in the valley will tell you that they have seen their share of symptomatic dogs here in the valley: lameness, lethargy, inappetant. Some have the renal form of the disease which causes kidney failure, and those usually do not survive. I saw a couple of those cases even in northern VA. So any veterinarian will certainly tell you that Lyme’s disease is here in the Roanoke Valley, to be sure. There have been incidence studies done of dogs, and you can probably contact the American Veterinary Medical Association to find some research. There seems to be quite a large disconnect between veterinarians and human doctors on this issue.
By the way, we treat dogs with a minimum of 4 weeks of oral doxycycline. Usually symptoms abate on the second day or so of treatment. The blood tests can take 6 months to revert to normal if the disease is treated, so they aren’t that helpful. When I was practicing, on the advice of the experts in the field, I did not treat dogs based on blood tests but rather on symptoms. But a lot of vets will treat depending upon that blood test to protect themselves from possible malpractice, although I have never heard of that happening.
Thanks again for the article,
Matt Eagen, DVM
[From Beth: He sent a followup email, as well, after I mentioned that a vet I interviewed at Virginia Tech said he didn't see very many dogs with Lyme symptoms.]
I don’t know who you talked to, but Lyme’s disease is certainly a very real threat to dogs in this country. When I was in PA, we were diagnosing them everyday. There is debate about whether or not we are overtreating these dogs, however. I go by what at least a couple of experts that I have personally spoken with say, in that I don’t treat the blood test results but treat the symptoms of the animal. There are many more dogs that test positive for Lyme’s antibodies than actually have symptoms of the disease. That said, many if not most of the vets I worked for would treat dogs based upon the test results regardless of whether or not the dogs had symptoms. But it most definitely is a real problem, especially in the north and the south.
I am not practicing right now, but have practiced here in the valley for a few years, as well as in PA and WI and NOVA.
Comment by bethmacy — December 21, 2010 @ 8:42 pm
According to Jesse Ventura’s Conspiracy Theory TV Show, Lyme’s Disease is a Bio Weapon invented in an US Military research lab on Plum Island. Apparently Nazi Scientist were rounded up after WW2 for their skills in bio warfare. Most notably those delivered by ticks. Plum Island is located in close proximity to Lyme Conneticut. What are the odds of that??? I the CDC is so convinced that a short dose antibiotics totally eliminates the disease then why don’t they volunteer to put their money were there mouth is put a tick with Lyme’s in it and then take their own medicine. If the government admits that the antibiotics aren’t 100% reliable and they invented this out of control bio weapon, they will be on the hook for massive damages that is growing one person at a time and spreading. Happy hiking! Definition of a scientist: A person who knows nothing until there is nothing left to know—from The Omega Man—
Comment by Walter Allen — December 22, 2010 @ 12:04 am
Thank God for Dr. Harbor. She was the doctor, who diagnosed me after years of searching for answers. In my first reply, I didn’t mention her name, as I did not want to cause any harm. I had not read this article, yet. She is a very courageous woman, extremely intelligent and a great diagnostician. It’s a shame that she is alone in this area fighting for what is right and the only doctor we can trust. Due to such mistreatment and abuse by the medical establishment it is hard for me to trust a doctor these days, but Dr. Harbor is the exception. I will be forever grateful to her.
Comment by M.I.Steinberg — December 22, 2010 @ 11:46 am
Moshe,
Your comment really hit it right on. It is true that everybody is passing that hot potato around and few doctors have the guts go against the mainstream thinking. They are too worried about their own welfare. Just wait until someone in their family gets Lyme and something might change. However, Lyme disease is for the rich and famous. They can always get the help they need, because they have the money. If you have Lyme and no money you are screwed.
I think a support group in this area would be a good idea. We need to give support and help to those in need and we have greater power as a collective team than individuals. We can help each other find the right treatment, information and health care professionals. There are a lot of snake oil salesmen/women out there, who prey on the sick, so weeding through that is an education in itself. The problem I have, is that my mind is not as sharp as it used to be and the energy is not as good either, so starting a group will take a lot of effort. I live in Blacksburg and I am calling the group blacksburglyme@gmail.com.
Comment by M.I.Steinberg — December 22, 2010 @ 12:19 pm
I’m posting this, at the writer’s request, by KLehtonen:
I am a scientist (in the process of changing into the field of nurse
midwifery) who is currently staying at home to care for my daughter who
has been ill for over a year with multiple tick-born diseases, Lyme,
babesiosis, bartonella, and mycoplasma pneumonae. I have taken the time
to explore the Lyme literature and I can tell you that many of Dr.
Kerkerings statements are not supported by the medical literature.
Some of Dr. Kerkering’s opinions that don’t hold up in the light of
scientific research include reliance on the CDC’s two-tiered testing for
a positive diagnosis. A recent study performed at John’s Hopkins
University (Coulter et all 2005) demonstrated that the standard
two-tiered testing returned false negatives in 65% of patients in the
acute phase of Lyme disease and in 23% of patients in the convalescent
phase. Until better tests are developed Lyme disease must remain a
clinical diagnosis and it is not ethical for physicians to deny
diagnosis based on negative serological testing.
The Four NIH sponsored studies on chronic Lyme disease documented the
extreme disability experienced by these patients. They were found to
have pain equal to that experienced by post-surgical patients and
fatigue levels similar to patients with congestive heart failure. These
patients are clearly not experiencing the occasional bad day as presumed
by Dr. Kerkering.
There is a growing body of scientific evidence demonstrating persistance
of infection after standard antibiotic treatment, the importance of
multiple tick-borne infections in the sickest patients, and the
significant variability in virulence of the more than 100 subspecies of
the Lyme bacteria B. burgdorferi. As a result the one-size-fits-all
treatments protocols espoused by the IDSA treatment guidelines are not
appropriate for a significant percentage of these patients.
The greatest shame is there are physicians who are developing successful
treatment strategies that are restoring many of these very ill and
complex patients to health. Detailed case histories of successful
treatment by expert clinicians would carry a lot weight in any medical
field except it seems for Lyme. The four NIH trials mentioned in the
article did not actually test the treatment strategies that LLMDs have
found to be successful in treating patients with late stage Lyme, many
of whom are also infected with tick-borne co-infections. Still the
Fallon trial demonstrated improvement in severe pain and the Krupp trial
demonstrated improvement in fatigue. It is the politics of Lyme disease
documented in this article that is preventing the clinical trials that
would validate many of these treatment strategies.
I don’t believe that LLMDs have all the answers and I examine critically
each of my doctor’s suggestions for my daughter’s treatment. There is a
HUGE need for research dollars to further examine the clinical treatment
all tick-borne infections. Still I believe that the LLMDs that have
taken on the care of my daughter are light years ahead of the naysayers
in solving this puzzle. Instead of being maligned, their years of
clinical experience in treating the most difficult patients should be
respected and it is their expertise that should be the basis for further
clinical trials.
Comment by bethmacy — December 22, 2010 @ 1:38 pm
Excellent article. The multitude of responses generated are also very compelling on this subject and another source of ‘experience’.
My daughter Nicole, now 18 was like most of the other replies- misdiagnosed. Finally sought care with LLMD.
2 years of IV meds and Nicole is indeed climbing Everest but winning, albeit very slowly. She recently graduated with honours from high school and hopes to become a doctor. We spent 10months living 3000 miles from home in CT with top pediatric lyme doc. A saint of a man. Back on the west coast of Canada we go to Seattle & SFO for appts every few months.
Cost: all we have:our house, savings, 401K, education funds, huge debt…
The PRIZE:to have a shot at life for Nicole versus being told it is all in your head or you have ‘growing pains.
Nicole is an amazing, determined, confident young woman. Her blog details a life with lyme, in a wheelchair with a 1 minute short term memory…that’s right! Her positive attitude shines through in spite of the enormous obstacles she faces.
All this torture for Nicole because no doc would listen or read my checklist of lyme symptoms. IGNORANCE.
See Nicole’s blog: http://www.bitemeback.blogspot.com/
For the naysayers out there in the medical community I would say go for a walk in the woods, play host to an infected tick and just see for yourself how brutal this disease can be! Oh…and then go to one of your fellow naysayers and be told it is all in your head:) Then just maybe you might be able to fulfill your oath. Because frankly your opinion that antibiotics may be harmful to this organ or that organ or whatever doesn’t cut it with people as sick as Nicole. Antibiotics are better than NOTHING and do help people fight this battle. People with cancer aren’t told, ‘sorry, this drug is toxic so we are not going to give it to you’. They are given a shot at life!
To the doctors who help lyme patients I am forever grateful for your logic, critical thinking & courage.
I leave you all with this quote to ponder:
“First, you know, a new theory is attacked as absurd; then it is admitted to be true, but obvious and insignificant; finally it is seen to be so important that its adversaries claim that they themselves discovered it.”” -William James (1842-1910)
Comment by chris powell & nicole bottles — December 22, 2010 @ 2:24 pm
Thank you Roanoke Times, Beth Macy and to those who agreed to be interviewed. “Lost in the Woods” is providing a path Into the Light for those who feel lost and alone in a medical debate/debacle. Chronic Lyme Disease my be ridiculed by some doctors, but it is here to stay….until a cure is found. Any illness as crippling, devastating and life-threatening as Chronic Lyme Disease cannot and should not be defined as “all in your head”, “Doxycycline Deficiency Syndrome” or “Affluenza”. This is abusive and an insult to every suffering Lyme patient.
Lyme and Chronic Lyme have reached epidemic porportions in this nation and in our own backyard. It is time for “lost in the woods” to become “found in the healing arms of doctors faithful to the Hippocratic oath”.
Thanks again to Beth Macy for her bravery, her depth of research and her skilled writing.
Ellen Douty
Lexington Lyme Disease Support Group
Comment by Ellen Douty — December 23, 2010 @ 7:51 am
We are buoyed by thegreat example of good journalism in the three-part series, Salvos Launched In Lyme Dispute, in Sunday’s the Roanoke Times. Reporter Beth Macy provides a balanced and informative report on the real issues of Lyme disease and the honest quandary facing physicians wanting to help their patients and decisions facing Lyme victims. Blind adherence to the mantra of “evidence based medicine” when there really is no clear evidence, leaves seriously ill patients abandoned by the medical profession in favor of allegiance to mere medical dogma, as exemplified in the biased reporting by the Tribune and LA Times biased reporting in Chronic Lyme disease: A dubious diagnosis (Dec. 8). Instead full and balanced information to patients so that they can make informed decisions in an uncertain world is needed.
Comment by National Capital Lyme & Tick-Borne Disease Association — December 23, 2010 @ 8:25 am
Thank you to all these — and more — physicians who are brave enough to put the best interest of their patients before ANYTHING else. I am a physical therapist, as well. Because I was misdiagnosed for six years, I ended up having to close my practice. My body simply couldn’t do it. This, of course, was after my husband and I had taken out tens of thousands of dollars to keep the business “afloat” during the time that I was fighting to keep working.
My neurological symptoms are incredibly severe. I have Lyme, Babesia, Bartonella and Erlicha. In addition, the house we owned had an illegal additional built onto it by a previous owner. It caused the house to be infested — from the floor joists all the way up the beams and drywall to the roof — with toxic mold, namely stachybotrys ch. and aspergillis.
My VETERINARIAN actually recognized what was wrong with me, CALLED MY NEUROLOGIST, but was ignored. That was two and a half years before I was correctly diagnosed by a physician in another state who was brave enough to “buck the system”. I am alive today because of him.
I will always be grateful to these physicians who actually LISTEN to their patients’ symptoms, OBSERVE their objective signs, PERFORM the appropriate testing, then use their gifts and talents to correctly diagnose and treat us. Rather than the incredible amount of criticism they are receiving, they deserve respect and admiration for putting their patients’ health – and LIVES – before anything else.
Comment by Lynne Wagner — December 23, 2010 @ 1:13 pm
Merry Christmas Beth! What an outstanding, well-blanced article you wrote about the LYME WAR CONTROVERSY covering all angles of this touchy, controversial subject!
I’ve had chronic Lyme now for 41 years this christmas. The tick that bite me came off my folk’s cut christmas tree; that’s right; you read correctly!!
I was misdiagnosed for almost 35 years by 40-50 drs.
Comment by BettyG, Iowa lyme activis — December 25, 2010 @ 6:19 pm
What kind of medical establishment do we have that ignores evidence Of a public health problem? Why should we believe anything they say anymore if they can see sick people, and do everything possible to prevent those people from getting help?
They say climate change is going to be bring more of these kinds of medical issues. Well, given the poor handling of what we already have, god help us in the future. Just more denial, ignorance, and incompetence.
The state and federal medical bureaucracies are allowing this to happen, and in the case of The National Institute of Allergy and Infectious Diseases, has absolutely botched it. Some heads need to roll. Medals need to be recalled from some folks.
Comment by mark johnson — December 26, 2010 @ 3:59 pm
Thank you to the Roanoke-Times and Beth Macy for an excellent series on Lyme. It’s not often a paper, especially one in an area considered newly-endemic, will take on this controversial topic with the degree of commitment you have shown. Though now living in California, where I contracted Lyme in 2008, I am a native of the Shenandoah Valley where I picked many a tick off in the 60s and 70s. Oh, those were the good ‘ole days, huh?
One suggestion that I have is that the R-T do a follow-up piece where they balance Dr. Kerkering’s suggestion that there is little scientific evidence of Lyme with the ample scientific evidence that is out there. If I weren’t so exhausted right now (oh, Lyme), I’d go look up the citations, but as a journalist, I know that you can, too. His assertion that he and IDSA doc’s are the only ones interested in “evidence-based” medicine is ridiculous and another red herring used by the IDSA camp. Also, diagnosing and doctoring is as much art as it is science. There should be room for anecdotal evidence.
Thanks again!
Comment by Californian with Lyme — December 27, 2010 @ 6:30 pm
My husband went through years of testing – r.a., bone marrow, lupus, etc., and was diagnosed with fibromyalgia. After much research, I was convinced he had lyme disease (he’s a hunter and fisherman, always coming home with ticks). No one would listen to me. His doctor did test him for Lyme, but the test came back negative, so he stopped the antibiotics after one treatment – even though my husband saw an immediate improvement in his symptoms. I saw a series on Lyme Disease on WSET, and contacted the doctor profiled, Dr. Sabra Bellovin, from Chesapeake. What a godsend that woman has been to our family! She has treated my husband as a person with a real disease and he has seen such an improvement, it’s almost unbelievable. Does he take 14+ pills a day? Yes. Is he still sick? Yes. Can he work and function again? Yes. Does he walk and act like an old man anymore? No. Do we have to make trips four and a half hours from home to see a doctor? Yes. Is it worth it? Of course. And for the Carilion doctor who acts like Chronic Lyme Disease does not exist – I hope to God that someone in your family never has this disease because it is devestating, life-altering…AND REAL!!!!
Comment by Vicky Reed — December 30, 2010 @ 1:48 pm
When this article came out I could not comment right away because I was in the hospital with what the neurologist told me he was 95% certain was a stroke caused by stress, but I have been dealing with Lyme since I was a graduate student in 1998. At the time I first became sick, the university I was attending did not offer health insurance for graduate students, and of course, insurance companies did not allow students over a certain age to remain on their parent’s insurance policies (talk about a Catch 22), so all I really had was the student health center, and even though I did have the classic Bulls-Eye rash, along with many other symptoms, no one there recognized Lyme disease. I had spent 21 consecutive days in bed with the worst flu-like symptoms I had ever experienced. My side was so sore I could barely move, let alone get up and walk around. The health center told me I had a bruised rib. I hadn’t fallen, didn’t play sports, lived alone and the most exercise I was getting was typing a thesis and lifting an occasional beer mug, so I was bewildered by their diagnosis. Needless to say, the thesis did not fare well as it competed with the Lyme for my attention, and it took way too long to complete. I had been a 4.0 student before getting Lyme, but after Lyme, I could barely complete a sentence, let alone type one. When I went to my family practitioner several years later, I was now sick enough that I often fell, mid-step, as I was walking from one place to the other. My Carilion PCP told me we didn’t have Lyme disease in Virginia, although he agreed to give me the Elisa Test. It came back negative. He then insisted that I needed antidepressants. I insisted on more Lyme testing, so he sent me to a Carilion Infectious Disease specialist at Lewis Gale, who gave me the Western Blot test, which also came back negative. The Carilion Infectious Disease specialist ridiculed me as I left his office, but I had already had Lyme for several years, so I wasn’t surprised the tests came back negative. I had done my homework and knew all about the fallacies of Lyme tests, so the fact that the tests didn’t come back positive wasn’t shocking to me. It had been years since I was first infected. What was shocking was the way this doctor treated me. I had never in my life been to a doctor who ridiculed a patient who came to him for help. That was a shock. I knew I was sick, and I knew I needed antibiotics to get better, but because these Carilion doctors already had their minds made up about a disease they had very little knowledge of, there was no patient, there were only the facts according to Carilion, and little else. It had taken me years just to get well enough to get a job with insurance, and for what? Now that I had insurance I could afford to have doctors tell me there was no Lyme in Virginia and ridicule and belittle me.
I finally found a LLMD, but shortly after I went to him, the NC Medical Board took his license away, although oddly, it had only been a few years before condemning him that the NC governor had recognized and honored this same doctor for his pioneering and successful treatment of AIDS. My lab tests finally confirmed the presence of not only Lyme, but Babesia as well, one of the tick borne co-infections. Finally, I began treatment, although because of what the NC medical board had done to my doctor, I had to pay for everything out of pocket. I finally began to get better, but Lyme treatment is not a sure thing, and it is almost impossible to undergo on your own, and still hold down a full-time job, but if you are going to pay for treatment, you do everything you can to just stay one step ahead of this disease and hope each day for nothing more than the ability to function.
Because the NC medical board was in the process of sanctioning my LLMD, IV antibiotics were never an option for me, but I was grateful just to finally have an antibiotic protocol that allowed me to function relatively pain free again. I stayed with this doctor as long as I could financially manage it, but it became more and more difficult to pay for treatment, and I began to look for alternative approaches again, and saw less and less of my LLMD. I was going into debt just trying to maintain treatment, and largely, that was because I was also trying to pay the student loans that had ballooned out of proportion while I was still in graduate school, trying to finish, and sick without any access to treatment. When I finally did finish grad school, I was still too sick to go out there and get a good job, so I took the first thing I could find with insurance, and put the student loans in deferment, but of course that deferment only lasts so long, and when it is over, and you are still sick, you take any deal they will offer you because you know you can’t make the astronomical payments, keep a roof over your head, and continue to work. So is middle class stress related to chronic Lyme disease Dr. Kerkering? Yes, I think I can agree with you in some vague way, but denying the existence, and therefore any viable treatment for chronic Lyme is contributing to that stress in multiple ways, wouldn’t you say?
Finally I realized that I had no choice. If I was going to continue working, I had to go back to my LLMD, but because he was now in DC, I still couldn’t maintain the kind of close communication with him I needed. I began treatment again, but I was very stressed out just trying to maintain my full-time job and undergo treatment. My employer has gone above and beyond to help me deal with Lyme and keep my job, not only by providing me with telecommuting options but also by modifying my office space to deal with the light and noise sensitivities that can go along with the neurological damage chronic Lyme leaves you with, but eventually, I could feel myself sliding downhill again. I was trying to undergo intensive antibiotic treatment and still work in an increasingly stressful environment and my body was screaming at me in every way it knew how, but I just didn’t feel like I had any choices left. I kept pushing myself.
Then came the stroke, the hospital, and the Roanoke Times article, for which I am extremely grateful. I am also grateful to Governor McDonnell for taking the initiative to address this disease and the varied and tortuous complications that continue to surround it.
I am not naive. I have battled this disease long enough to understand that maintaining health involves much more than just identifying and killing the bad guys in your body. In fact, even identifying the bad guys and separating them from the good guys is tricky business when you are dealing with bacteria. I understand this. HOWEVER, denying treatment, denying the existence of one of the fastest growing diseases in the United States and abroad, and being arrogant enough to actually believe that your titles and opinion trump the growing body of evidence proclaiming otherwise is not only unconscionable, it has helped to prevent the kind of research we need to find improved treatments and has left thousands of people suffering, misdiagnosed, in pain, losing their health, their livelihood, and eventually their lives….all to satisfy the egos of a handful of arrogant doctors.
Hard to believe, isn’t it?
Comment by Anne — December 30, 2010 @ 10:48 pm
“Coward” does not begin to describe this Dr. Kekering and his cohorts; they are making their livelihoods and bank off of others’ suffering and early death.
Nor does “conservative” quite fit Dr. Gubb. When I saw him, he handed me ILADS papers recommending coverage of both the month-long growth cycle and different morphs of B. Burgdorferi with sufficient doses and different kinds of antibiotics. IV was not automatic; the drugs, dose, and delivery depended on the patient. I had negative tests but symptoms consistent with Lyme and an EM rash, and minimal Doxy stopped them cold. But when I slacked off a bit and began having peculiar short term memory loss, it was soon clear Gubb would not, or felt he could not, do anything else. I was stunned, and angry.
The way I see it, longer-term antibiotics are a 50-50 shot, and that was mainly why Gubb’s patients were coming to him from out-of-state, not the pain killers Virginia Medical Board dinged him for, though they had the right to. I now know that other Gubb patients were treated more by ILADS’ guidelines rather than IDSA’s, and am left to wonder how much the Medical Board is to blame for my continued, worsening disability. I cannot work full-time; I’m not wheelchair bound yet, but have had entire days “losing keys,” and have zero aerobic exercise tolerance. Long-term sitting tasks, let alone shoveling snow, are a challenge. I don’t know if switching drugs or doses would’ve cured me, but I’ll never have an answer.
The IDSA says that patients harmed by drug-resistant antibiotics have no advocates and political allies. Watching how IDSA works, it seems that’s IDSA’s fault. But again, if what Gubb was doing was such a crime, the VA Board should have sanctioned him for antibiotic use too; officially, they did not, and let him back into practice, literally just before or as the governor formed the Lyme Task Force. I’ve read elsewhere that Gubb coincidentally retired. ‘Stinks more than all the cattle manure in Texas.
Comment by HamptonRoads — January 3, 2011 @ 3:10 am
Thank you for this article. We need to 1) support the doctors who are currently treating patients with Chronic Lyme, 2)support and encourage our politicians to make a safe environment within which our LLMDs can practice, and 3) fund the research necessary to create the correct and accepted protocols and drug treatments for those of us with Chronic Lyme.
For our children, we need to stop arguing with the naysayers (what a negative, draining, bottomless pit!), focus on what works, document it, and move on. Only then, can we spare others from the nightmare that is currently the life of those of us dealing with this awful disease.
Thank you gain, Roanoke Times, for this article.
Comment by Nancy — January 4, 2011 @ 11:59 am
From a Galax reader:
Ms. Macy,
I wanted to thank you so much for your articles, “Lost in the Woods”.hopefully bringing awareness that this disease is real.
I have suffered for 10 years getting a dx of Chronic Fatigue Immune Dysfunction Syndrome /Fibromyalgia . I went to many doctors, saw specialist and had lots of test. Even the standard lyme test which was negative. I kept getting worse I was and am housebound and most of the time bedridden. I was to sick to go to the doctor. I couldn’t live and couldn’t die. So one day I crawled into the doctors office and while checking me for MS they did do a lyme Western Blot test, well bingo it came back with positive bands.
I went from an active working, traveling , mom, grandmother to being a burden on my family.
Ok, I have a dx but now the treatment. I was put on a 3 month course of abx. which has made me so sick, in fact I had to take some time off from them. I realize this is a low dose short term treatment but for now I have no other choice. I am trying to locate a LLMD near by that accepts insurance as I am not able to travel at this time. Not having any luck. I do have a good GP who is willing to work with me but he can only do so much.
I so hope you got and get a lot of positive feed back and will do more articles. If I can help in anyway I am here ..
Thank you again and God Bless,
Phyllis Moore
Comment by bethmacy — January 4, 2011 @ 2:21 pm
From a reader in Buena Vista:
The Buena Vista FMS-CFS-MCS-Lyme Network will meet Saturday, January 29, at 11 am at St. Johns UMC. Our speaker will be Donna Sheffield. She will be discussing acupuncture cupping for pain control. Scent policy in effect. Confidentiality honored. For more information call 261-6280, or email blackpercheron at gmail.com
Comment by bethmacy — January 4, 2011 @ 2:26 pm
What’s the expression? Lies, damn lies, and, the IDSA!
IDSA guidelines challenged, copied from Reuters.com and Archives of Internal Medicine
“They found only one in seven treatment recommendations from the Infectious Diseases Society of America (IDSA) — a society representing healthcare providers and researchers across the country — were based on high-quality data from clinical trials…
By contrast, more than half the recommendations relied solely on expert opinion or anecdotal evidence…’Despite tremendous research efforts, there is still a lot of uncertainty as to what is the best patient care,’ said Dr. Ole Vielemeyer, an expert in infectious diseases at Drexel University College of Medicine in Philadelphia and one of the study’s authors.”
http://www.reuters.com/articleidUSTRE70A06J20110111?pageNumber=1
based on:
“More than half of the current recommendations of the IDSA are based on level III evidence only. Until more data from well-designed controlled clinical trials become available, physicians should remain cautious when using current guidelines as the sole source guiding patient care decisions.”
“Physicians may assume that following such guidelines means practicing evidence-based medicine. However, the quality of supporting literature can vary greatly.”
http://archinte.ama-assn.org/cgi/content/abstract/171/1/18?etoc
Comment by Truthbeknown — January 12, 2011 @ 9:59 pm
May each of you keep loving one another through the uncertainty.
My friend with chronic lyme always seemed better after her massage
Comment by whatworks — January 14, 2011 @ 12:00 pm
I am a massage therapist who is willing to support those who need help. There are many benifits to massage; and the most important one is that it gives the effects of exercise to those who can’t exercise.
I am willing to give work to those who might never have experienced the gift because charity is what I do
I will try to get to Lexington for the acupuncturist’s talk; but weather here is a bear.
I have had many acupuncture treatments; and can only say that it’s effectiveness is unsurpassed!
Comment by whatworks — January 14, 2011 @ 12:22 pm
The meeting about Acupuncture cupping is in Buena Vista, VA on the 29th, a Saturday at 11 am. The meeting will be at St. Johns UMC located at 21st and Walnut Ave.
C.S. Miller , group facilitator, Buena Vista FMS-CFS-MCS-Lyme Network
Comment by C.S. Miller — January 17, 2011 @ 4:22 pm
Thank you for doing this article. It is true, Chronic Lyme is real. Not only are children getting Lyme but entire families. I know this because my family and I have Chronic lyme. We contracted it more than 5 years ago and just got diagnosed 6 months ago. We saw many doctors all of whom were not able to make the diagnosis. Why is that? How can we trust our doctors isf they don’t even know the truth about Lyme disease. It is not easy to diagnose, not easy to cure. Yes we had the typical antiobiotic treatment…it didn’t work. The CDC is posting outdated, inaccurate information on Lyme. The public must be informed.
Comment by Sally Spitz — February 5, 2011 @ 11:02 pm
I acquired Lyme and co. in June 2010 after removing a tick from my body while visiting Churchville.
I am the one and only person reported to the CDC with Lyme in Volusia County, Florida for 2010.
IV Rocephin antibiotics saved my mind (well, most of it) and heart (along with whopping doses of Metoprolol), and I may be on oral doxycycline for life.
Chronic Lyme is real,
it took me 12-13 doctors to get diagnosis,
it exists in the Shenandoah Valley Virginia and in Central Florida (although getting a diagnosis is difficult) and everywhere in between, although
finding a physician willing to treat is not always possible.
Getting adequate treatment is challenging at best.
God bless my IDP and GP,
Thankful they are not afraid to use the big guns when needed. Thankful they do the right thing.
They both need more Lyme and co-infection education.
Thankful they try to “get it” and try their best.
Takes both of them to handle.
I buy the oral antibiotics out of pocket in order to stay in the game over the long haul with insurance.
You must become an expert in order to have a chance at remission if you are unfortunate and develop chronic Lyme.
Physicians willing to treat are few and far between.
Comment by D Carson — July 16, 2011 @ 5:38 am
Lyme disease is definitely bad news, and it is a shame that the health board isn’t standing up against it more – if there are so many cases then maybe they are wrong in their thinking that not too many ticks carry them.
Comment by physical therapy jobs — September 19, 2011 @ 11:44 am