In search of hope, facts
The burden of Taylor Albright’s longtime physical and mental ailments
has chipped away at her livelihood and her family’s finances.
Taylor Albright has drawn support from her family, including daughter Victoria Bongard (left), 12, and son Griffin Bongard, 8. Her prolonged intravenous antibiotics cost almost $40,000 a year, and many doctors contend that treatment is harmful to both her and the public. KYLE GREEN | The Roanoke Times
By Beth Macy | 981-3435
Her day no longer revolves around legal contracts and land deals.
Taylor Albright had been such a fierce negotiator that her colleagues nicknamed her The Tiger. But now the 45-year-old lawyer finds it a challenge to get her three children to soccer practice and order pizza on the phone.
Some days she has enough energy to do both, but often she can do only one — and it takes an iPhone alarm to prompt her.
She’s set her phone to quack, like a mama duck calling her ducklings, when it’s time to pick the kids up from their Blacksburg school. When she forgets a phrase or can’t finish a sentence, her children joke that she’s speaking “Mommish.”
It’s a language that even she doesn’t always understand. Once she referred to herself as Tammy. Another time she caught herself misspelling her son Griffin’s name.
The crushing tiredness and arthritic joint pain, the neurological complications that cloud her ability to think, the life-threatening blood clots and debilitating incontinence — Taylor and her doctor believe they are all manifestations of the chronic Lyme disease she’s had for more than 25 years.
But the illness is fast becoming medicine’s third rail. It’s not recognized by the Infectious Diseases Society of America, which says there’s no evidence to prove it exists.
Taylor and other patients may have something wrong with them, the medical establishment argues. But whatever it is, it’s not chronic Lyme, and it certainly shouldn’t be treated with long-term antibiotics, which not only doesn’t help people, those doctors contend, it can hurt them — and the public at large.
Taylor has read the IDSA arguments with her typical due diligence. Even on bad days, she knows the guidelines word for word.
Nonetheless, she was relieved in December 2009 when her New York Lyme specialist, Dr. Richard Horowitz, suggested she defy the establishment credo and undertake the most controversial treatment of all: prolonged intravenous antibiotics, self-administered through a catheter in her chest.
The treatment would take four to six hours a day, and complications could occur. At a cost of almost $60,000 a year, very little of it covered by insurance, it could bankrupt the family.
Yet for the first time in 25 years, The Tiger finally felt a thread — albeit a precarious one — of hope. Whatever was crippling her, maybe this would put a stop to it.
‘Convergence disorder’
Taylor was a high school student in southern New Jersey when she got her first tick bite — and shrugged it off. Looking back, she figures it was that nonchalance that did her in. She endured a litany of ailments followed by a litany of specialists, with nobody, not even Taylor, stopping to consider the tick-borne disease.
In her early 20s, a doctor diagnosed her with ankylosing spondylitis, a rare and incurable inflammatory arthritis and autoimmune disorder. If her diagnosis kept her from seeking other explanations for her pain, it was her headstrong denial that kept her from letting it slow her down.
Albright & Bongard, the law firm and title agency that Victor Bongard owns with his wife, has faced downsizing, mainly because of his wife’s absence from the job.
She overcompensated by working harder, longer hours. After the kids came along, she and her law partner-husband, Victor Bongard, bought a couch for her office. What did it matter if she napped between clients since one or both of them would be working through the night anyway?
But the pains grew harder to ignore, especially after a second tick bite at FloydFest in July 2006. She watched the bite site vigilantly for a rash, wrongly thinking it had to be present for Lyme.
By October, her chest and back pain was so severe that Victor rushed her to an urgent care doctor. No tests were performed, and Taylor didn’t think to mention the tick. She was suffering from stress, the doctor decided, and prescribed the sedative Ativan.
Another week passed before her family doctor found blood clots in her lungs and hospitalized her for 12 days.
Over the next two years, her health plummeted. Taylor forgot things, things she should have known — the names of her kids’ teachers, for instance.
Another embolism appeared, this one on her shoulder, and her head and limbs shook. A 2009 visit to the Mayo Clinic ruled out the earlier diagnosis of ankylosing spondylitis, but there was nothing to replace it with other than “convergence disorder.”
A doctor at Mayo suggested that label after Taylor described helping care for her grandmother, who lived nearby, before her death in 2007. Because her tremors mirrored her grandmother’s Parkinson’s-like shakes, he postulated that Taylor was so emotionally bereft that she had taken on her symptoms — 18 months after her grandmother died.
To The Tiger, it was simply another doctor, another version of: “It’s all in your head.”
The visit so traumatized her that she couldn’t talk about it for months — not even, at first, to Victor.
At work, the law firm and title agency the couple had worked so diligently to build was imploding — partly from the recession but mainly because of the absence of Taylor, who had managed every aspect of it.
Today, the firm of Albright & Bongard, which once comprised 13 employees, has downsized from seven attorneys to just two. The couple are mainly living off the proceeds from the sale of their dreamland — the acreage that was supposed to house their companies.
Because of her earlier autoimmune diagnosis, the firm’s application for disability insurance had been rejected, so she receives no benefits.
“My husband’s working like a dog,” she said on a weekday in September. She was lying down to conserve energy so she could drive her 12-year-old, Victoria, to soccer practice in Roanoke later that day. Her omnipresent appendage — a clear plastic bag of liquid antibiotics — ran into her chest through a tube tucked under her T-shirt.
“Not only am I not bringing business in, but I’m the cause of huge expenses,” she said. “It’s horrible.”
Anecdote isn’t data
Viewed through the Lyme controversy prism, The Tiger’s IV treatment — deemed experimental by her insurance company — plunges her squarely into the deep end.
Dr. Thomas Kerkering, Carilion Clinic's infectious diseases section chief and a professor at the Virginia Tech Carilion School of Medicine has spent much of the past decade 'de-mything' chronic Lyme, which he likens to chronic fatigue syndrome and fibromyalgia before it. He lumps the three into disease 'catch-alls,' faux ailments designed to give a name to the stresses of daily living.
It’s the kind of doctoring that infuriates Dr. Thomas Kerkering, Carilion Clinic’s infectious diseases section chief and a professor at the Virginia Tech Carilion School of Medicine. He’s spent much of the past decade “de-mything” chronic Lyme, which he likens to chronic fatigue syndrome and fibromyalgia before it.
He lumps the three into disease “catch-alls,” faux ailments designed to give a name to the stresses of daily living. “Again, it’s: ‘If I’m not feeling well today, it’s my Lyme disease acting up,’ ” Kerkering says.
“Nobody can prove or disprove that their symptoms are or are not due to [chronic] Lyme disease. … Those of us who stick to the scientific evidence are pilloried.”
His dismissal of chronic Lyme comes at a moment when Carilion is banking its reputation — and its new medical school — on “evidence-based medicine,” the concept of applying the most scientifically sound research to clinical decision-making.
Kerkering built his career at the Medical College of Virginia and East Carolina University before coming to Roanoke two years ago. Along the way, he led medical mission trips to some three dozen Third World countries, winning humanitarian awards. He has battled epidemics in war-torn countries and, closer to home, seen to it that needy HIV/AIDS patients were not turned away.
But he has little patience for the Lyme wars and greets a reporter’s inquiry with: “I’ve been looking forward to this [interview] as much as a root canal.”
LewisGale Medical Center’s infectious disease specialist may report seeing 25 to 30 Lyme cases this year, but Kerkering’s team at Carilion has confirmed just four cases from the region — even though about 50 people have called about suspected Lyme. If the callers don’t pass the two-tiered blood test for Lyme, “We generally don’t see them because we can’t do anything for them,” he says.
It irks him when patients threaten to “ ‘go see my doc in Manhattan’ … because that’s where most of the charlatans are. They’ll do IV antibiotics for two years. Insurance doesn’t cover it, and people are willing to pay thousands of dollars to have a diagnosis,” Kerkering says.
(Taylor says her doctor doesn’t accept insurance because several Lyme doctors have lost their licenses after being sued by insurance companies.)
What’s at the heart of their malaise?
Kerkering does not directly say, “It’s all in their heads.” But in the course of an hourlong interview and in followup e-mails, he contends that the placebo effect is a more powerful influence on health than antibiotics.
“For those people who’ve had a diagnosis of chronic Lyme disease and have been treated with long-term IV antibiotics, there is no evidence of benefit, even though some individuals may feel they have been helped,” he says.
In fact, complications from such treatment have included infected IV lines, gallbladder problems, yeast infections and, in one case, death.
Taylor Albright injects herself with a needle of Lovenox, a blood thinner that is part of her daily regimen of shots, pills and intravenous treatment for chronic Lyme disease. Before this diagnosis, doctors attributed her symptoms to ankylosing spondylitis, stress or “convergence disorder.” KYLE GREEN | The Roanoke Times
“Lyme-literate” doctors believe that many Lyme cases fall through the cracks of undertreatment — or in Taylor’s case, no treatment at all — spiraling into chronic, hard-to-treat infections. But mainstream physicians insist that a short antibiotic course kills off the spirochetes in all but a very rare number of cases.
If Carilion really wanted to make a fortune, Kerkering adds facetiously, it would open up a chronic Lyme clinic. “We’d be busier than we want — but we’d be taking advantage of patients, sort of like the con man taking advantage of the old people.”
His mantra, a line he likes to shares with other infectious disease doctors in town: “Anecdote squared does not equal data.”
‘Not evil, just wrong’
Kerkering is leery of stories such as the one reported in an October Roanoke Times obituary. Johnette Sowder, a 47-year-old former emergency-room secretary and nursing school student, died Oct. 14, from complications related to chronic Lyme, her family contends.
While the initial autopsy report found her cause of death to be inconclusive, this much is certain: The Back Creek woman had been severely ill and on disability for several years. She was in so much pain that she could no longer feed the birds and other animals on her 90-acre property at the base of Bent Mountain — the place where she was presumably bitten by the tick.
She was hospitalized three times in Roanoke, initially for shortness of breath, chest pains and swelling. Heart problems were initially suspected, but multiple specialists ruled that out, along with several other conditions. At Duke University Medical Center, where she went for a cardiology workup, the intake doctor sent her to the psychiatry department instead.
Her family practice physician, Dr. Marie Malinchak — who had worked with Johnette at the Carilion Roanoke Memorial Hospital emergency room years earlier — eventually tested her for Lyme, with equivocal or inconclusive results, considered negative by most mainstream doctors and insurance companies.
Convinced Lyme was responsible for Johnette’s illness, Malinchak referred her to well-known Lyme physician Dr. Joseph Jemsek in 2003. That was three years before his medical license was suspended for diagnosing and treating chronic Lyme using methods that were outside the “recognized standards,” according to the North Carolina Medical Board.
But Johnette and her husband, Wayne Sowder, saw Jemsek as a savior. When he sent her Lyme test off to a controversial lab in California and it returned with resoundingly positive results, the Sowders were relieved.
“We were naive enough to think that the medical system, now that it knows the problem, can actually fix the problem,” recalls Wayne Sowder, a music sound engineer.
When Jemsek relocated his practice to Washington, D.C., in 2009, Johnette followed him there. For seven years, she took Jemsek-prescribed medications, including a wide range of antibiotics, most of them oral — because her insurance company would only pay for 30 days of IV antibiotics.
Taylor Albright — surrounded by kids (from left) William Bongard, Griffin Bongard and Victoria Bongard — often lacks the energy to do many tasks around the house. Neurological complications, which her specialist attributes to chronic Lyme disease, cloud her ability to think. Misspelling her son’s name or forgetting her own happens at times. KYLE GREEN | The Roanoke Times
“Due to the impediments that were placed in the way of her doctor, we were forced to take half-measures and baby steps, which I believe prolonged Johnette’s recovery,” Wayne Sowder said.
It wasn’t until this past summer that she finally began to feel better. “She had stopped most of her pain meds voluntarily,” he recalls. “She was even thinking of getting back into nursing school.”
But she died moments after collapsing at her father’s house in Knightdale, N.C., after complaining of severe back pain. Family members believe she may have been stricken by a blood clot.
Less than a week after her death, the news of Gov. Bob McDonnell’s Lyme Disease Task Force appointment hit Wayne Sowder in the gut. “I thought, finally, the world’s waking up and she’s not gonna be able to appreciate it. A week before, we would have been high-fiving about that.”
Sowder says he had shielded his wife from the politics of the disease, including what he calls the “tin-foil-hat conspiracy people” who believe insurers, big pharma and politicians are conspiring to line their pockets at the expense of Lyme patients.
“Some people make bad decisions, some companies make bad decisions, and some governments make bad decisions. The problem that Lyme disease suffers from is a convergence of all three,” he says.
“They’re not evil, just wrong.”
Savior or snake oil?
The Tiger is on the couch again — only this time she’s not just lying there; she’s sewing. Her 10-year-old son just passed a karate test, and a new patch must be added to his belt.
Victor is home between clients. A part-time Pulaski County prosecutor, he’s getting ready to meet a domestic violence victim at a shelter on this, a recent fall day.
Where once she was intimately involved with every detail of his work, Taylor concedes: “I had no idea that was even part of his job.” In the beginning it was too painful for her to hear about work, so he got into the habit of telling her nothing at all.
After 11 months on the antibiotics, Taylor has measured small but steady improvements. As of September, her head tremors had subsided, the night sweats were nearly gone. She no longer had involuntary “sewing machine leg” shakes when she walked down the stairs.
Though she figured she was 70 percent better than she was at the height of her illness, she felt worn down by the treatments — the multiple shots and pills, the tube sticking out of her chest — and was considering stopping the IV drugs.
While grateful for the gradual improvement, she shared some of Kerkering’s concerns:
“Have I been taken in by snake-oil salesmen? Am I spending my children’s college money on snake oil? I wonder.”
Her husband disagreed. He saw Taylor improving by the week and believes they have the controversial doctor with his controversial treatment to thank. “If it’s having a positive effect, unlike nothing anyone else did, how can it be wrong?”
In mid-October, Taylor’s improvement had plateaued. Her doctor stopped the IV drugs and upped her oral antibiotics — and almost immediately she began to feel worse: The numbness in her limbs returned, along with the night sweats.
“I’m not going to know if it’s really snake oil till it’s over,” she said in November. “But I’m doubting it [the doctor’s treatment plan] less and less now. I think the fact that I’ve gotten worse confirms the Lyme diagnosis.”
Victor finds the establishment’s take on chronic Lyme both dishonest and intellectually flawed: “Just because you can’t prove something doesn’t mean it isn’t true, and these researchers know that.”
It’s a paradigm problem, he adds. “Their entire life’s work depends upon the paradigm they’ve constructed and built their careers on. It’s threatening to the core of their life’s work that it might be different.”
Still, the disease has nearly bankrupted the family. Their retirement, their kids’ college funds, their investments — without her income, the cushion has collapsed.
It’s driven some friends away, in part because Taylor literally can’t recall who they are. At the Unitarian Universalist church they attend, Victor has been reluctant to share their story.
He’s a lawyer and a part-time prosecutor, after all. He’s supposed to stand up for the little people, not be one of them.
“But I keep thinking, if only people knew. … It’s not just that you’re not getting a paycheck. It’s that you’ve spent all your retirement, and your medical bills are more than you might make in a given year.”
Last spring, Taylor had arranged to sell her beloved Harley-Davidson, a Sportster 1200. Even as a kid she’d loved riding on her dad’s Harley. When she took up riding, it fulfilled her desire for adventure, for challenging the status quo.
She hasn’t been able to ride for years now, and the proceeds could have paid for a month’s treatment.
But Victor put the brakes on the sale. The Harley remains parked in their garage. It’s a symbol of the powerful woman his wife once was and his hope that one day, The Tiger will roar again.
-30-
This story is the second in a three-part series on Lyme disease. It first ran in The Roanoke Times on Monday, Dec. 20, 2010.
I have Lyme. I know a lot about it. Unfortunately, I am very sick right now and cannot manage to type out much. It’s the hardest thing I have been through in my 28 years of life, and I guarantee it will be the hardest thing I will ever go through.
The lack of awareness from of disease has made me lose so much. I have lost money. I am not on disability. I cannot afford the treatment and my parents help me out with about $3,000 a month. I lost my husband, which is amazingly very common when it comes to Lyme.
My life will be dedicated to awareness even when I am better. I wouldn’t wish this disease on anyone. It is real, and it hurts real bad. Physical pain, emotional pain, completely disabled and ignorance from people.
I appreciate that you read this =)
-Marie
Comment by Marie — December 20, 2010 @ 5:24 am
I thank you very much for running these article on chronic Lyme Disease. It is sincerely appreciated. I recovered from completely a debilitated state where I had difficulty talking, eating, walking and tasting. I even was unable to control my motor functions and lost my sight/hearing. It took a combination of conventional and unconventional medcine but it was well worth it. It is time that patients are able to get the necessary treament according to their needs and not the “rubber stamp” treatment that the IDSA says is sufficent. Thank you again.
Comment by Lyme-Aware — December 20, 2010 @ 7:42 am
Amazing how there are four National Institutes of Health (NIH) trials that have validated the existence and severity of chronic Lyme disease, yet Carilion et al chooses to operate under IDSA cabal guidelines denying chronic Lyme’s existence at the expense of patient lives purposely creating disability. Boggles the mind that the only thing that matters are commercial interests in the form of patents, research grants, and federal dollars.
I am grateful that there are Lyme literate doctors who treat Lyme disease based on clinical signs. I am thankful that Taylor Albright, and others mentioned in the article got treatment. I am reminded of what Jordan Fisher Smith said in the documentary Under Our Skin, “…if I had not been able to find doctors who would soak me in antibiotics for years, you would not be talking to me today. The folk myth is antibiotics are bad, they’re not bad for you if you have a fatal infection.”
C.S. Miller, group facilitator Buena Vista FMS-CFS-MCS Lyme Network, Buena Vista Va.
Comment by C.S. Miller — December 20, 2010 @ 7:52 am
From an email about the series. Thanks, all, for writing and for posting here. Beth
Ms. Macy,
I thank you for this excellent article! I am looking forward to the
next two! I specifically appreciate that you have brought the blood
clotting issue to light. It is one of the least discussed of the
serious complications. We hear frequently enough of the fibrinogen and
blood thickening, but very rarely about the threat of pulmonary emboli.
I think that we have a compelling, but under-used, argument against the
protest of long-term antibiotics use. We never talk about the
dangerous medications prescribed for the many serious
complications/conditions that accompany tick-borne diseases. My
daughter, who suffered a pulmonary embolism, was placed on warfarin at
the age of 22 to manage a blood clotting condition called protein S
deficiency, for which she tested positive 3 times. Her hematologist
told us it was hereditary with one exception – it could occur in
pregnancy temporarily. Ironically, her father and I tested negative;
and there is no history of blood-clotting disorders in our families.
And she was not pregnant!
Warfarin is just one of a long laundry list of serious medications she
has been, or is currently on. She had a serious dystonic reaction to
reglan, which was prescribed for gut motility issues – another
condition rarely mentioned when discussing lyme symptoms, yet found
commonly in the young patient population. What parent isn’t very
hesitant to put their children on antibiotics, even for short periods
of time? After 7 years of trying to manage my daughter’s tick-borne
illnesses, antibiotics are really the lesser evils in our ongoing
battle to regain some semblance of health.
I appreciate so very much your contribution to expanding the education
of the public beyond the simplistic PR rhetoric of pain, fatigue, etc.
I hope you had an opportunity to watch the webcasts of the IOM
workshop. The public needs to hear what Dr. Jacobs, the pediatric
doctor from the University of Arkansas had to say about children
dealing with the effects of lyme disease – for them it is 50 to 70
years, not 10 to 20! As a parent of a young 24 year-old who was
diagnosed at 17, I had already come to this realization. Having him
validate it publicly gave me hope that this acknowledgment will bring
a change in the course of treating and managing in mainstream medicine.
But that will happen only if the message reaches the masses!
Again, my thanks to you and my best wishes for the holiday season and a
Happy New Year.
Cindy Eisenhart
Comment by Cindy Eisenhart — December 20, 2010 @ 8:05 am
Thank you for the article and the opportunity to reply. I have been sick for 2 years and 8 months and I am finally rejoining the land of the living. I was bitten by at least 6 ticks and was at the doctors within 10 days with terrible symptoms. She treated me for 28 days but since my first tier test was negative, there was no more treatment offered even though I was sicker than ever. I finally found a specialist in Seattle WA who addressed the co infections that were possible and just 5 days into my 3 month course of Levaquin I had my first glimmer of hope. There are hundreds of bacteria that can be transmitted by ticks so I think the term Tick Borne Illness is more accurate than Lyme Disease. I have been on a variety of oral antibiotics in combination for 2 and 1/2 years and feel certain that I would not be here without them. I am back to work repairing my business and I am so grateful to be well enough to help care for my father who is dealing with terminal cancer.
As for Dr. Kerkering and Dr. Stephanie Nagy-Agren who don’t “believe” in chronic lyme, I hope they take the time to read the science that they are choosing to dismiss. My illness doesn’t depend upon their “beliefs” but treatment does depend on the review of all of the evidence, not just the IDSA sanctioned studies. (Some of which are very flawed). I will be sending them copies of the Lyme Times IDSA Hearings Part II when I can located accurate addresses.
I look forward to the additional articles.
Patricia Hetrick
Comment by Patricia Hetrick — December 20, 2010 @ 8:33 am
The article was extremely important. It is a repeated sad situation for other diseases that it takes awhile for it to be accepted as a real sicknees such as MS.
Can we put everything aside as to whether it’s a real disease and realize there are people and there families and their work place, etc. that are suffering from something that requires treatment?
I understand the requirement for review and approved treatment since just treating with everything without standards is not correct…expect for those who have nothing left and will die anyway.
Comment by sue — December 20, 2010 @ 10:11 am
I am not a doctor, nor do I have lyme disease or any other health problems. I am part of the same community as the Albirght/Bongard clan and have met them both through legal consulations and youth activities over the years. I had no idea that they were going through this and I, as well as all readers of this article, sincerely wish that they find some hope during this difficult time.
The reason that I am posting here is to mention a (albeit small), but growing Nutrition concept that has had enormous success in combating auto-immune disorders as well as any general metabolic syndromes that afflict us as humans in the 21st century. My wife and some of our friends have been following it and studying it for a couple of years (with tremendous success) and I think it could be something that this family might want to look into, especially if they are looking for something that they havent tried already and that they are not likely going to get from their doctor(s).
There are a few different names for this, but the ‘Paleo Diet’ is probably the most Google ready search term. There are a few leading internet bloggers on the subject as well, with Robb Wolf (robbwolf.com) being the one who has addressed the auto-immune issues at most length. Some others are Mark Sisson and possibly Art Devany. The basic concept is that proper Nutrition (and exercise) regulates our optimum digestive, auto-immune and hormonal function and that foods eaten by our hunter-gatherer ancestors are what humans have evolved to eat rather than the foods that have been massed produced in relatively recent times to support growth of sedentary societies.
There are growing, documented cases where very simple and sustainable dietary changes have produced reversal of auto-immune disease in as little as a few weeks time.
Good luck to the family in combating this terrible affliction and perhaps this could be another arrow in their quiver.
Comment by sean — December 20, 2010 @ 10:11 am
I have known people who have had tremendous success with the “caveman diet” specifically with rheumatoid arthritis. For me, with Lyme, I have followed a very strict diet eliminating sugars of all types including sugar, limiting carbs and increased proteins. I was wheat free before the lyme and totally gluten free now. I have use rice since for a long time I could digest nothing properly and unsweetened rice milk with rice protein powder seemed to be the only thing that I could absorb. I had avoided beef for 30 years after my grandfather got out of the good beef business and added that back in after finding a local farmer with grass fed beef. Vegetables were totally wasted on me as they didn’t digest at all. Nuts are also still a staple for protein. Lyme patients do face many dietary issues and there are forums that discuss the various options though sometimes it comes down to what will work to give the cells enough energy to fight.
I am glad to see this mentioned as one more avenue to try.
Comment by Patricia Hetrick — December 20, 2010 @ 10:39 am
I have had Lyme for 9 years. I have had several bouts with it requiring antibiotic treatments. Before I was diagnosed I was told that I had MS. I lost partial vision in my left eye that I will never recover. I had begun the first stages of kidney failure right as I was diagnosed. I am very thankful that my doctor believes in Lyme disease and was able to find out the problem when he did. I was sent to a rheumatoid Dr. because I have issues with my joints especially during an episode. I was told that there was no such thing as chronic lyme. I was not diagnosed for a year of being infected and as I said before have had several bouts which the titer test come back positive so do the math. I have battled chronic fatigue, concentration problems, memory issues, and fibromyalgia. This is very frustrating, but I only have been prescribed anti-inflammatories as needed. I deal with this everyday but no one around me truly understand what I deal with. Thank you for this article to allow me to see that there are others that suffer as I do and I am not alone.
Comment by Kelly Balderston — December 20, 2010 @ 1:25 pm
I have had Lyme disease for 9 years and was not diagnosed for a year after being infected. I had lost partial vision in my left eye, which I will never recover. I have chronic fatigue syndrome, fibromyaligia, memory issues, and concentration problems. I have learned to deal with my symptoms but no one around me understands what I deal with on an every day basis. I am one of the lucky ones, to have gone on for a year and be as healthy as I am, it is a miracle. I was diagnosed at first to have MS. I suffered several miscarriages as I unknowingly knew that I had lyme. I also have had several positive Lyme titer test, but have been told by specialists that there is no such thing as chronic lyme. Thank you for this article to allow me to see that I am not alone in this and others are dealing with my pain as well.
Comment by Kelly Balderston — December 20, 2010 @ 1:31 pm
Thank you for this wonderful and informative article. As a ‘Lymie’ struggling to beat this devastating disease, I have a request. Please consider posting this series on a simpler background. I have enough cognitive issues without trying to decipher white words on trees! Many thanks.
Comment by maureen — December 20, 2010 @ 2:07 pm
Thank you Ms. Macy, for balanced reporting.
Quote: Victor finds the establishment’s take on chronic Lyme both dishonest and intellectually flawed: “Just because you can’t prove something doesn’t mean it isn’t true, and these researchers know that.” Unquote.
That truth lies at the center of the Lyme wars.
Chronic Lyme is not controversial. It exists and is horrible–and sooner or later is life-threatening. What’s controversial is whether the IDSA can lie about it and get away with it–and for personnal profit.
Many illnesses can not be diagnosed directly by a blood test or by ten blood tests. Often these patients are diagnosed using indirect tests and images, and by their signs and symptoms! They are then helped in what ways are known to help. That’s what doctors are supposed to do. If needed and agreed to by the patient, it’s also important that patients be measured “guinea pigs”–to a point that seems rational. Otherwise, how will medicine improve? For example, progress in cancer treatment is highlighted by patients who, given all that’s known, took the next step for themselves and for humanity.
Patients have been guinea pigs for thousands of years. Chronic Lyme treatment has improved over the decades because patients agreed with their doctor to take a rational step forward–to a point, and humanity has benefitted by patient response to treatment. The Tiger has stepped up to the plate.
There is a huge difference in this, versus Lyme scams meant to make profits–never meant to help any patient.
No patient should be an intellectual argument. We’re alive! No patient should be a stick-figure of academic medicine. When, once again, doctors and researchers can see each patient as the individual human being that they are, compassion will return. It starts by listening to what the patient has to say … what are their signs and symptoms? To not believe the patient is doctor arrogance.
When someone is very ill, what can be done to help them? Prolonged antibiotic combinations very much help us. Why should we be denied? For one, it’s more costly to government when we are not helped.
Dr. Kerkering talked about patients passing the two-tiered blood test for Lyme. That was devised by the CDC to be used for surveillance many years ago and the CDC has stated that. Dr. Kerkering has chosen to ignore it.
I have an idea for a start, for now, for most doctors: When you wonder if a patient might have Lyme, you could mumble, “Could it be Lyme? I don’t know how to diagnose and treat chronic Lyme. It’s complicated! You might go to http://www.ilads.org – Lyme is always a clinical diagnosis.
Comment by Diane J Marie — December 20, 2010 @ 3:03 pm
This is an incredibly enlightening article, and quite an eye-opener. I live in the Charlottesville area and have a friend with chronic Lyme-disease. I’ve watched her struggle in many of the same ways to get a diagnosis and treatment. Even still, there are facts that she shares with me about the disease that take me by complete surprise. I wish this story would run in the Daily Progress — there are some local doctors who should read this article series. Knowledge is power.
Comment by Maria P. — December 20, 2010 @ 3:08 pm
Please stop plugging your product here.
Comment by Patricia Hetrick — December 20, 2010 @ 3:18 pm
Interesting article…I live in New York and sadly Dr. Horowitz and the other so called Lime Literate physicians do not accept any insurances…which indicates to me that these “doctors” are more concerned about money than the patient’s well-being…no compassion for those who are near bankruptcy. Visit his website and look at his fees…outrageous!
Comment by DMary — December 20, 2010 @ 3:26 pm
While this article is well written, I don’t think it accurately depicts the evidence against this disease. It seems biased to not even lists the reasons that the majority of the medical establishment insists Chronic Lyme is a fraud. While the symptoms these people show may in fact be signs of a real illness, those who claim to have solved it with long-term antibiotic treatments are businessman, not doctors, and they are risking the health of everyone, especially those they “diagnose” with Chronic Lyme.
Comment by William Wallace — December 20, 2010 @ 3:50 pm
Many of the Lyme literate MDs will work with people on treatment payment. Some doctors donate their time. These are very compassionate dedicated doctors.
C.S. Miller, group facilitator Buena Vista FMS-CFS-MCS Lyme Network, Buena Vista Va.
Comment by C.S. Miller — December 20, 2010 @ 4:11 pm
Let it be known that literally hundreds of people will read your words and a light bulb will go off in their heads as they figure out what’s wrong with them. It will be a lifeline to them and a first step towards reclaiming a life they had dispaired of ever regaining.
Comment by Julia Rice — December 20, 2010 @ 4:20 pm
Thank you so much for your balanced coverage regarding Lyme Disease and the problems associated with its treatment. You have provided much needed information in a format which is easy to read and understand. I intend to send the link to all of my family and friends so they will see that I am not the only person to go through this nightmare.
Comment by Barbara Nowak — December 20, 2010 @ 4:48 pm
Thank you for tackling this hot and unpopular topic with grace and balance. Thus far, your first two articles are more unbiased than any on chronic lyme that I have read.
I am a parent of a teen in the Roanoke area with lyme. Whether lyme continues to be an active infection, triggers auto-immune disorders or responses, CFS, etc., or all of the above, is called chronic or post-lyme syndrome remains to be conclusively proven to the satisfaction of all. More accurate testing is desperately needed, more research, and treatment options. And, compassion….
Comment by Les — December 20, 2010 @ 4:58 pm
I think it would be helpful to have more information about the NIH trials mentioned by C.S.Miller in this thread. Indeed anecdote does not equal data, so the question I have is: Why isn’t there more data?? I have tested positive twice and gone through three rounds of oral antibiotics in the past seven months but am still experiencing shoulder and side pain. It is not helpful to have doctors dismissing the reality of this disease. Doctors should always remember that just because we don’t yet understand a condition does not mean that it does not exist!
Comment by Gail — December 20, 2010 @ 5:38 pm
Thank you to the Roanoke Times for bringing attention to these issues. After 2 days, I notice that you quote several local physicians who are quick to be dismissive of patients who suffer from Lyme disease and other tick-borne illnesses. I’m wondering when you will share quotes from the many physicians who treat the thousands of patients who have these diseases, instead of just quoting the patients? There are many such physicians out there, thankfully. You have not left that journalistic stone unturned, have you?
Comment by Roanoker — December 20, 2010 @ 7:08 pm
Mr. Wallace, please watch the webcasts on the IOM website of the Lyme Disease workshop held in October. Make a list of the facts presented that support your supposition of fraud. Start another list of the presenters who acknowledge that there really is persistent illness occurring in a percentage of the infected population (nearly universal). Include what they believe is the cause of the persistence. They simply do not know. There are theories – immune response; multiple pathogen infection (babesiosis, anaplasmosis being the two most common); persistent infection. The scientists who presented at this workshop are the experts in the field of tick-borne diseases. If you watch these presentations, you will begin to believe, as they do, that we have a serious problem. Dr. Beard of the CDC has stated that lyme disease is a public health crisis. Have you heard of any other “hard to get, easy to treat” or fraudulent infection identified as such? Watch, listen and reconsider.
Comment by Cindy Eisenhart — December 20, 2010 @ 8:23 pm
The position of Carilion Clinic, as presented by Dr. Kerkering, is extremely troubling.
He says that if a patient doesn’t pass the two-tiered blood test for Lyme, “We [Carilion] generally don’t see them because we can’t do anything for them.” Let me get this straight – these patients are suffering from devastating symptoms, and Carilion is turning them away instead of trying to get to the bottom of it? How disturbing. Even worse, these tests are known to have high numbers of false positives. So these people are being turned away by Carilion due to a possibly faulty negative test result, instead of being properly informed by their physician of the high incidence of false negatives. (Is it any surprise that Carilion has only diagnosed 4 people? I wonder how many people with Lyme they have wrongly turned away.)
Dr. Kerkering and Carilion’s practices remind me of the response “absence of proof is not proof of absence”. This doctor seems to think that the lack of a positive test result is undisputed proof that you cannot have Lyme disease. How unscientific.
It may take several more decades, but these patients will someday be proven to have valid complaints, perhaps even to Carilion’s satisfaction. In the meantime, unfortunately, many individuals will suffer from an unfotunate lack of care and compassion from physicians like these. Dr. Kerkering, the earth is not flat, regardless of how certain you are that it is.
Comment by Roanoker — December 20, 2010 @ 8:31 pm
These ridiculous discussions would not be required if the public and the doctors who treat would do their homework. We have outstanding published evidence, of how and why Neuroborreliosis patients are infected with organisms that cannot be seen on current guidelines as well as why the refuse to change them when China tells us they have lied for yrs. with their guidelines just published this mth. that only require one band, to protect profits for every symptom the Borrelia can produce. As well as how they have correlated sero discoveries to most patients of Syndromes of Unknown Origins. IMO the public should be outraged with what is happening-knowing at any time it could be them caught in this web by a tiny nymphal tick blowing in the wind. While instead of giving us tests and treatments to help us they cite no such thing to try to keep people from knowing what is really happening in our immune systems. They have just found that animals are better able to fight many chronic infections than US humans can…And they don’t want you to ask why, because that could delay profits. If you look into the last 20 yrs of Govt. funded research less than 1% is used to discover the actual cause of the syndrome of unknown origin–the funds go to drugs to just cover up the symptoms and deplete the immune system further. Its a win win for profits and a always lose for the patients. In Autism/MS/ALS/Alzheimers/Lyme/etc. etc. immune suppression is the treatment of choice. In Lyme it has a projected infection rate of over 400,000 while cost Overall, between 2009 and 2017, the Lyme disease therapeutics market is expected to grow at a CAGR of only 4.8% to reach $3.2m by 2017. How can this be if those in the know says Borreliosis is the fastest growing epidemic in the world? Because they have no intentions of helping you, ever…
Comment by SilverMaven — December 20, 2010 @ 8:36 pm
Mr. Wallace,
Two months ago the NIH-sponsored Institute of Medicine (of the National Academies of Science, Bethesda, MD) held a two-day workshop regarding the state of the science of Lyme and Other Tick-borne disease.
Furthermore, the Governor of Virginia has created a panel to investigate Lyme in the Commonwealth.
As tempted as I am to lower myself down to your level and resort to name-calling (“fraud” “businessmen” not doctors), I instead suggest you learn about how many of the studies cited by the IDSA are faulty, and how many hundreds of studies have been conducted which validate the persistence of borrelia infection after treatment.
The evidence is there; the science is there, you’re just choosing not to read about it. The IDSA, the CDC, and insurance companies all have something to lose if the science is properly brought to the forefront.
I strongly recommend you read Pamela Weintraub’s book “Cure Unknown,” and read the evidence-based treatment guidelines set forth by physicans who work with lyme everyday:
http://www.ilads.org/files/ILADS_Guidelines.pdf
ILADS guidelines have saved our family; IDSA incompetence and corruption nearly destroyed it. It’s that simple.
Until you’ve experienced both sets of treatment, you can not comment as to what works. Walk a mile with my cane, Mr. Wallace.
Comment by Truthbeknown — December 20, 2010 @ 8:36 pm
Roanoke Times, thank you so much for publishing this story.
When there are two standards of care, the patient deserves to be informed of both and given a choice. Just as the Attorney General has contested mandated purchase of an insurance product, the Commonwealth of Virginia must recognize the patient’s right to choose a treatment plan.
Every Virginian affected by this deadly disease should attend at least one of the hearings to be scheduled in 2011. Stand up, show up, speak up.
http://www.hhr.virginia.gov/News/viewRelease.cfm?id=443
Comment by Truthbeknown — December 20, 2010 @ 8:51 pm
Dr. William Osler said:
“There are, in truth, no specialties in medicine, since to know fully many of the most important diseases a man must be familiar with their manifestations in many organs.”
and
“Know syphilis in all its manifestations and relations, and all other things clinical will added unto you.”
Lyme is syphilis times 1000.
Where have all the good doctors gone?
Comment by Truthbeknown — December 20, 2010 @ 9:07 pm
Mr. Miller…even if there are Physicians who accept payments…if the fee is $900.00 for the first visit and subsequently hundreds…one could be paying for years and if treated for years there is no end. Why don’t these Lyme Literate physicians accept insurances? I believe it is because insurance companies are skeptical of this treatment…medical research has shown that the majority of Lyme patients eventually become free of Lyme symptoms. My daughter’s Lyme symptoms )after both oral and antibiotic infusion) took a year to subside. After seeing top specialists in New York City…this was the conclusion: further treatment doesn’t speed the healing process and over use of antibiotics can be detrimental and even deadly. I do understand the controversy but there is no feasible solution for those who cannot afford even payments.
Comment by DMary — December 20, 2010 @ 10:07 pm
The controversy concerning insurance companies can be explained by watching the Lyme documentary, Under Our Skin. http://www.underourskin.com/
C.S. Miller, group facilitator Buena Vista FMS-CFS-MCS Lyme Network, Buena Vista Va.
Comment by C.S. Miller — December 20, 2010 @ 11:55 pm
I have been suffering from what I believe could be lyme disease for 4 years and it has destroyed my life! There are thousands that are suffering. Usually the mainstream Dr’s dont “get it” untill someone in thier family or themselves are affected by it. Many of the Doctors that treat lyme are dealing with it themselves so that is why they are so passionate,and of course they would not take insurance because they could lose thier medical license! This could affect anyone ,I know kids suffering ,middle age ,and older people,this disease does not discriminate. You can not give a accurate count of lyme disease cases because the DOctors just admitted in the article that they do not report. I know 5 people that have contracted lyme just in my town ,so I know it has to be WAY under reported! Please check out the ILADs website for information on lyme. I was lucky enough to see Noryn Turners 3 part series on WSET channel 13 ,and she was suffering from chronic lyme and what I was hearing were the exact symptoms i was having. I was so happy to have a diagnosis but little did I know what a battle I had before me!!
Comment by sickoflyme — December 21, 2010 @ 12:15 am
I am quite puzzled. Lyme is an infectious disease thats not disputed to have the possibility to be very dangerous, damaging to many organ systems, and can cause prolonged symptoms. The argument seems to be what to do about those symptoms when 3-4 weeks of oral meds dont really do much.
And yet, instead of gathering or analyzing the data that is already out there, to find some answers of who exactly with which symptoms can be helped by which drugs and for how long; we are all caught in the midle of the arrogant deaf ear of most of the IDSA community and the rabid cult-like marketeers and predators within the Lyme community ( especially the fringe).
What is most disturbing are the accusations that Lyme patients who choose long term antibiotics are placing others in danger-”resistance” is the word most often used-even the IDSA has released statements of alarm chosen to scare others, that Lyme patients’ overuse of antibiotics will place everyone at risk. Yet they are STILL prescribing YEARS of antibiotics for ZITS ( not a life threatening situation for most);STILL prescribing years of antibiotics for other less dangerous ailments as well. Years of Botox for wrinkles and damp armpits that migrate and cause more medical problems that insurance and government aid programs ( i.e. all of us) will have to bear a financial burden for.
Like Cancer,where treatments are offered that have serious risks but without them, morbidity ( and even mortality) are dismal and therefore it is a decision between patient and treating physician; so too Lyme must be respected in the same way.Believe me, Id guess that 99% of all Lyme patients would prefer to stop taking all medications;stop going bankrupt trying to buy their children medication. And if it truly were “placebo effect” as the good Dr above states; then why is it that not just ANY antibiotics work?? why is it that for almost all Lyme patients only certain ones and certain combinations work while others dismally fail?? Why is it that for some, very cheap drugs work great while others need expensive ones?
Why is it that symptoms that should not be fixable by antibiotics in the first place, do in fact improve greatly with those antibiotics-like vertigo,like neuropathy,like anxiety/panic disorder, like dysautonomias? ( even symptoms intractable by the usual drugs for those symptoms such as tranquilizers, antivert,etc);and again not by the first or even second drugs tried.Yes there are hidden effects of some classes of drugs (for example, the tetracyclines may also be anti-inflammatory)-but if symptoms are abated then why doubt their effectiveness, whatever they are doing? We can give a zit faced teen years of tetracyclines and not question that ( and not a large percentage of these kids have the severe or cystic acne that requires drugs); but we can try and take away from a mother of 3 with Lyme, her medication claiming its a public health safety issue due to resistance–DESPITE those drugs helping her to abate her symptoms enough to care for her kids,then I scoff at that reasoning.
Further, it is high time the Lyme community demand accountability. Yes from the Drs who charge exhorbitant fees [and some even have contracts of payment as well as non disclosure agreements]. Demands that people hawking ineffective and possibly dangerous treatments halt doing so. Demand that those using Lyme as a badge of honor to beg for donations, prove their need and hold their use of funds accountable as well.Demand those selling quack cures, quack books and how-to’s for seeing spirochetes with your own cheap microscope be held accountable.
Until we in the Lyme Community are willing to make sure those within and without are behaving ethically we cannot expect respect or to be taken seriously! Until we in the Lyme Community, leave the cult like belief system and embrace the real probability that our “answer” lies between the IDSA “no such thing” paradigm and the ILADS and support group mentality of ” every herbal, supplement,baseless expensive treatment;every antibiotic combination for years” then we may not get the answers we need.
Much thanks for this article which was refreshingly balanced. May I suggest that the mental illness many have been misdiagnosed with is “Conversion Disorder” and NOT “Convergence Disorder”.
Comment by Lymefiter — December 21, 2010 @ 2:14 am
Thank you for writing a more balanced article on Lyme. It is very complex.
And to the person that wants the perspective of a doctor treating Lyme patients……most doctors that treat Lyme don’t want to draw any more attention to themselves than they need to out of fear of lawsuits which jeopardizes caring for their patients and taking care of their own families.
I would be hesitant to label these doctors as money-hungry doctors who refuse insurance when they are trying to listen to their patients and get to the bottom of their symptoms rather than telling them their symptoms are in their head…and all this is considered off-road from the “mainstream medical community”. There is a risk for doctors attempting to treat this disease and it should not be undermined or their motives questioned. There would be an easier, less risky way to get rich in medicine if that was what you were after.
Comment by A — December 21, 2010 @ 9:14 am
I got Lyme in 1994 in Hampton, VA. After 5 weeks of back and forth to the doctor for various reasons, I was diagnosed w/Lyme and given 6 weeks of doxycycline. At least the chronic pain in the knees and elbows went away, but the numerous other symptoms continued. When I went to a doctor about chronic fatigue I was told to exercise and when I mentioned Lyme it was always the same, this isn’t Lyme. In 2007 in Toano, VA I was, I say “by the Grace of God”; bit again. I went to my doctor who adamantly stated it was not Lyme because the bull’s-eye rash was not “big enough”. We went round and round and she slammed her “biblical CDC book” and gave me some antibiotics anyway. I was determined and went to see a doctor in NY who had requested I have several tests run by different agencies around the country which did finally give me the official diagnosis of Lyme disease. My doctor agreed to let me continue on antibiotics for 8 months. I felt better than I had in years. The Lyme has been creeping back in but I still feel better than before. The best references I have found for this disease is “Cure Unknown: Inside the Lyme Epidemic” by Pamela Weintraub and ADVANCED TOPICS IN
LYME DISEASE, by JOSEPH J. BURRASCANO JR., M.D. which is a 33 page guideline you can find on line. It’s quite the mess for anyone who gets this disease, trying to get treatment, people looking at you like your crazy, friends tired of hearing it, job loss, money loss, insurance companies and waking up in the morning feeling like you need to go back to bed for 8 more hours. It’s amazing how civilized “we” think we are but how barbaric a mentality we still work from. God Bless you all with Lyme disease because it will take a miracle to help!
Comment by LINDA LEIDY — December 21, 2010 @ 10:10 am
Thank you for writing about the Lyme epidemic. The public needs to know what is going on, so that they can protect themselves and our children from this devastating disease and it’s co-infections.
I have been sick for many years and I am not sure when I contracted Lyme, but Bartonella,I think, I got from a severe cat bite 10 years ago and I could have gotten Lyme at that time as well, because that is how long I have been unwell. At the time of the cat bite, I was treated for Sepsis with antibiotics, but I was never tested for anything. It has been a slow, downhill process with many strange symptoms and since I already had an injured neck with disc problems and bone spurs, it was hard to differentiate what was what. In the spring of 2009 I was bitten by a tick again (I have had several tick bites during the years)and after that the decline was fast and furious. Lyme attacks your whole body and moves around at will leaving you confused and defenseless as the symptoms can vary a great deal from person to person. I went to doctor after doctor, but was mostly dismissed with statements like:” You are stressed”. “You are working too hard”. “You are depressed and need a psychiatrist”. “It’s all in your head” etc. When my lab work became abnormal, showing signs of infections I begged for some tests, but I was told:”I don’t know what to test for. You better go and see somebody else.” I was labeled with a myriad of diagnosis such as: Chronic fatigue, Fibromyalgia, Depression, Anxiety Disorder, Sleep disorder, Myalgia, Arthritis, Overactive Bladder, Thyroid Disease, Other Hormonal Disorders, Adrenal Fatigue, Dry Eye, Migraine. I was even told to go and exercise more, which I did, but I only got worse. I would push myself to exhaustion, until finally one day I could barely get out of bed. I was now home bound and in enormous pain with brain fog, memory loss, total insomnia and severe depression. I felt I was dying. My only support was my son, who was just as baffled as I was and researched everything, but we never thought of Lyme, because I never really had bad joint pain or a Bull’s eye rash. One day I told my son:”I am just a broken, crazy woman and life has finally done me in”. My son said:” No, mom you are not crazy, you are sick and we just don’t know what is wrong with you1!” My son was the only one who believed me. So far no doctor had taken me seriously and I was dismissed over and over again with lots of prescriptions for pain, muscle spasms, depression, anxiety, insomnia and migraine. Then luck serendipitously happened. I was told about a good diagnostician, a doctor not too far away and I was finally heard. I was listened to for the first time in years without immediate labeling. The doctor said after careful consideration:”We need to test you for Lyme and Bartonella”. To my own surprise both tests were highly positive. I am forever grateful to this great, caring, compassionate doctor. I was lucky as I tested positive, whereas often that is not the case and people are still left in limbo due to faulty testing. With a positive test I could get antibiotics, but in order to continue on antibiotics I still had to go North to another state to see a Lyme Literate MD and pay out of pocket. I am slowly crawling out of the Lyme hole and some of my energy has come back and I can walk my dog on good days. In order to get well I believe that I am responsible for eating a gluten free, starch free diet with lots of organic vegetables and meat, lots of probiotics and other supplements as well as herbs. I meditate, do sauna, hyperbaric oxygen, yoga and walk and I try to keep a positive attitude. Building your immune system to become strong again is key to a positive outcome. Whether Lyme can be eradicated completely is yet unknown, but I believe that it is possible to still have a life after Lyme and that the bacteria can be fought back to a manageable level.
Comment by M.I.Steinberg — December 21, 2010 @ 1:00 pm
Thank you for posting this article on an important subject. I have had lyme for many years, and went misdiagnosed for a long time. My primary symptoms were cardiac in nature, and when all this first started in the course of about a month I went from a normal functioning person to someone who couldn’t walk up a flight of stairs without stopping (and I was only 23 at the time!) After a misdiagnosis of a genetic condition, my condition worsened which led me to find a new doctor for possible autoimmune disorder. It was at this time I tested positive for multiple tick borne illnesses. There is no doubt in my mind that treatment has helped me. After many years where nothing helped, my cardiac problems are much improved.
Thanks again for the article. Lyme is a very serious and disabling disease, and I hope the research will continue to provide better treatments and testing.
Comment by Pam — December 21, 2010 @ 3:02 pm
Learn all about Lyme disease directly from the wolr leading expert physicians, clinical researchers and Lyme patients. http://www.lyme-disease-research-database.com/lyme_disease_blog_files/christmas2010.html
Comment by Lyme advocate — December 21, 2010 @ 3:04 pm
Thank you for an informative article. Sadly, this is just one more story about a formerly vibrant and successful individual who is now severely disabled and nearly bankrupt because of Lyme disease. I began my battle with it in 2000, and It took me five long years of IV (limited) and oral antibiotics to recover. It was sooooo worth it; I am completely recovered, work full time in a professional career, and feel great!
It is frustrating and sad to me that the infectious disease establishment is still putting up the same road blocks to treatments it did 10 years ago, despite a wealth of evidence to the effectiveness of long term courses of antibiotics.
So to Lyme sufferers I would offer this advice:
1. Forget the infectious disease and entrenched establishment doctors who choose not to see the truth. They would rather have you die than treat you for Lyme disease.
2. Find a Lyme literate doctor to evaluate if Lyme disease treatment might benefit you, and then be diligent about your treatment. Be patient. The road to recovery takes courage and determination, but is absolutely worth it.
3. Don’t let the medical establishment deny you your good health.
I, along with so many other tick bite victims, am so grateful to my Lyme doctor for giving me my life back.
Comment by pk — December 21, 2010 @ 3:50 pm
LDRDatabase: why would you so rudely post a promo for your own website/blog here? fwiw I have heard from many advocates, that your blog isnt reliable, much of the information is gleaned from less than valid sources ( such as media and biased “newsletters”) and frankly there are far better sources out there. None of those admins are trying to sneak their promos in here.THIS is exactly what is so wrong within Lyme and why we arent taken seriously! zero accountability.
Comment by Lymefiter — December 22, 2010 @ 12:40 am
Two thoughts.
(1) Just because your daughter was fortunate enough to have her Lyme disease symptoms dissipate without further treatment does not mean it works that way for everyone else who has this disease. In fact, if you read the article and many of these comments, you already know that.
(2) Yes it is a tragedy that so many Lyme specialists do not take insurance. But you are both making false accusations as to why (greed) and blaming the wrong person. This is actually yet another example of the complete and utter failure of our health care system, and the fact that we have real death panels that have been in existence for years now — the for-profit insurance companies.
They have decided, with the help of the IDSA and insurance friendly university based Lyme researchers, some of whom were instrumental in crafting the IDSA guidelines, that Lyme disease is an easily treated and easily cured disease. Not only do they often refuse to pay for extended antibiotic treatment, but they routinely threaten to drop doctors from their plans if those doctors treat chronic Lyme. And they routinely report chronic Lyme doctors to state medical boards who then launch very costly investigations and trials.
Some 40 chronic Lyme doctors around the country (which is a huge number considering how few doctors are willing to take the risk) have faced these investigations and trials. We have one in process here in CT right now. It has cost the doctor hundreds of thousands of dollars to fight the charges lodged against him by the state medical board, charges that are dubious at best, do not involve patient harm, and were zealously pursued by a medical board and its hired experts who are well known to have a bias against chronic Lyme disease and a desire to remove from practice those doctors who treat it. This situation led to the state legislature passing a law forbidding the medical board from punishing doctors for choosing to use longer term treatment of Lyme disease.
Hopefully that provides more insight to you and others with similar questions.
One final point. Chronic Lyme doctors spend an inordinate amount of time with each patient. My first appointment was 2 hours long and included the most thorough workup I have had in my entire life. With the many years of history and multitude of symptoms that must be discussed, chronic Lyme does not fit into the typical insurance driven 10 minute drive-by diagnostic visit so typical of today’s medicine (and just think about how much doctors charge you for that 10 minute office visit).
Comment by Steve G — December 22, 2010 @ 2:27 am
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??? If 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 and put a tick with Lymes on them 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 24, 2010 @ 12:12 am
While I now live in northern California, another Lyme hot-spot, I am a native of Lexington, VA (kudos to Dr. Harbor!). I contracted Lyme in California in 2008.
I hope the Roanoke-Times will do a follow-up piece based on some of the suggestions they receive in the comments section. While I thought the piece was very good, I was very surprised that Dr. Kerkering’s (of Carillon Clinic) assertion that Lyme doc’s are not practicing evidence-based medicine was not challenged journalistically. Two points on that: Of course scientific evidence is important to heed in deciding how to diagnose and treat a disease. Dr. Kerkering implies “Lyme doctors” don’t know this, which is preposterous. There is ample scientific evidence of Lyme (BTW, in recent public medical venues – transcripts available on-line – medical researchers have contested the scientific rigor of the tests Dr. Kerkering and his ilk tend to cite over and over again). Secondly, diagnosing is as much an art as a science. There is always room for anecdotal evidence. So, Dr. Kerkering’s trumpeting of “evidence-based medicine” as if Lyme doctors are anti-evidence is yet another red herring used by IDSA doctors.
I fully agree with Victor Bongard (the husband of Ms. Albright featured in the article): many IDSA doc’s have staked their reputation on their stubborn stance, and perhaps the fact that so many patients have suffered seriously as a result makes them dig their heels in further. Only the wisest and most humble would concede that maybe they got it wrong. If ever those doctors wise and humble enough do come forward, I hope we in the Lyme community will be equally wise and humble, and embrace them. We certainly need all the help we can get!
Comment by Californian — December 27, 2010 @ 4:44 pm
While I now live in northern California, another Lyme hot-spot, I am a native of Lexington, VA (kudos to Dr. Harbor!). I contracted Lyme in California in 2008.
I hope the Roanoke-Times will do a follow-up piece based on some of the suggestions they receive in the comments section. While I thought the piece was very good, I was very surprised that Dr. Kerkering’s (of Carillon Clinic) assertion that Lyme doc’s are not practicing evidence-based medicine was not challenged journalistically. Two points on that: Of course scientific evidence is important to heed in deciding how to diagnose and treat a disease. Dr. Kerkering implies “Lyme doctors” don’t know this, which is preposterous. There is ample scientific evidence of Lyme (BTW, in recent public medical venues – transcripts available on-line – medical researchers have contested the scientific rigor of the tests Dr. Kerkering and his ilk tend to cite over and over again). Secondly, diagnosing is as much an art as a science. There is always room for anecdotal evidence. So, Dr. Kerkering’s trumpeting of “evidence-based medicine” as if Lyme doctors are anti-evidence is yet another red herring used by IDSA doctors.
I fully agree with Victor Bongard (the husband of Ms. Albright featured in the article): many IDSA doc’s have staked their reputation on their stubborn stance, and perhaps the fact that so many patients have suffered seriously as a result makes them dig their heels in further. Only the wisest and most humble would concede that maybe they got it wrong. If ever those doctors wise and humble enough do come forward, I hope we in the Lyme community will be equally wise and humble, and embrace them. We certainly need all the help we can get!
Comment by Californian — December 27, 2010 @ 5:16 pm
Every doctor, including Dr. Kerkering, who scoffs at the existence of chronic Lyme should offer to get bitten by a tick and experience Lyme first hand. They shouldn’t object because a 4 week dose of Doxy cures it permanently, right???
Comment by tired of having lyme — December 30, 2010 @ 3:30 pm
Maureen- I agree with your comment that the text here is hard to read for some with the trees in the background.
May I suggest that you highlight the text of this article with your mouse, hold down the CTRL key and then press the letter ‘C’ to copy the text. You can then paste the words of the article into a word file, or whatever text editor you use. That way, you can format it any way you like to see it better.
Hope that helps.
Editor’s note: Also try clicking the green Print / PDF button at the end of stories, which will create a clean copy to print.
Comment by Richard — December 31, 2010 @ 1:13 pm
I suffer from Lyme and have been receiving treatment for almost 2 years. My symptoms include neck/joint/muscle pain, chronic fatigue, word block, memory loss, digestive issues (Swiss Kriss & Probiotics helped alot with the digestive issues), nausa, severe sleepiness, etc. The doctor I found to treat me is in DC. I beleive if anyone has RA, MS, Fibromyalgia, Parkinson’s, “thick blood/clots/heart issues” or Alzheimer’s, they should find a Lyme doc and rule out Lyme by testing for it or by taking doxy for 60 days to see if there are any clinical results (you may get worse before getting better because the die off creates additional toxins and inflamation in your body). I suggest anyone remotely interested in learning more should consider googling and purchasing the DVD “Under Our Skin” and the book “Healing Lyme”. I have not ordered “Cure Unknown” Inside the Lyme Epidemic or Advanced topics in Lyme Disease by Joseph J. Burrascano (33 pg guideline) but I will certainly give those suggestions a try. It is a slow process to get better but I try to count the baby steps and know they will contine to add up and I will get the rest of my life back in time. One year ago, picking up a coffee cup was a 2 handed job but now I can lift light weights with one hand
It is sad that we have to fight to get treated and we have to spend so much wasted energy to try to convince our friends and loved ones why they shouldn’t hold us to the same standards as they did “before Lyme”. I look fine so why am I so lazy now? Why do I use my “sickness” as an excuse to get out of taking care of family and responsibilities? Why do I hide away from family/friends and not get involved with family functions any longer, etc? The answer is Lyme victoms save their energy to survive and take the path of least resistance to do anything. If you don’t have Lyme, think about how much energy you have when you are recovering from the flu. You may get out of bed to do a task and crawl back in bed to rest so you can maybe do another task later in the day. When you get out of bed, you feel like you could crawl back in and sleep for another 8 hours. Basically you don’t ever feel rested and full of energy. You are tired and full of pain 24/7. One doc said to me “Lyme reconizes Lyme”. It is so frustrating to see someone that is obviously suffering from Lyme and you know they need to start on the same journey but their doc says they don’t have Lyme (no such thing in our area) and will not even do the testing for it or experiment with doxy to see if there are clinical results. It definitely takes over our lives but hopely I can use this experience to help others one day when I feel better. I encourage you to reach out and insist on helping friends and loved ones with finding help if they suffer from any of the symptoms noted above. If you have your full energy, you can use it to help others. If your friend/loved one is suffering, they may not have the energy to get the help they need. How can you help them get the help they need to “live again”?
Comment by Penny — January 1, 2011 @ 10:02 am
Thank you so much for addressing this issue…In July of 2009, I had flu like symptoms with a high temperature and found a bulls eye rash. My physician examined the rash, did blood work and started me on 2 weeks of antibiotics. Then in May 2010 I went to my physician when I started feeling tired all the time and my physician originally diagnosed me with depression/stress. Symptoms continued to get worse and I returned to the physician in early June, with my husband in tow. It took my husband telling the physician how sick I was and requesting the Lyme disease blood tests, both tests confirmed that I indeed had Lyme disease for a 2nd time, but my symptoms were much worse. During the 3 months of summer, if I wasn’t in class I was in bed with migraine headaches, fatigue, low B12 and spikes in my blood pressure. When my concentration failed, my daughter would climb in bed with me calling out questions for exams, over and over. Five months later I am feeling much better but still experiencing issues with migraines, suseptibility, and raised BP. This disease took a lot out of me and has left me paranoid that it could return with a vengeance.
Comment by Dublin, VA resident — January 4, 2011 @ 3:25 pm
I would like to say thanks for the efforts you have made writing this article. This has been an inspiration for me. I’ve passed this on to a friend of mine.
Comment by papierosy — February 4, 2013 @ 7:15 pm