In this video I interview Jennifer Crystal who teaches creative writing in Massachusets and Vermont and writes a column at www.globallymealliance.com.
She has just finished a book called One Tick Stopped the Clock about her experiences with Lyme Disease.
As most people who have suffered with Lyme, Jennifer spent almost 10 years going through the wringer trying to figured out what was going on with her health. Jennifer popped up on my radar as I was doing some research on circadian rhythms and Lyme disease.
Latent infections that pop up randomly just scream circadian rhythms to me. I found a blog of hers detailing how changing the clocks would cause a relapse of her symptoms as she was battling with Lyme. Then I found another on how sticking to a schedule was part of her routine. Jennifer spent 8 years being misdiagnosed, but this story has a happy ending: She’s been in remission for 12 years. She didn’t find the magic pill we’re all hoping for, but what she found was a way to conquer Lyme disease following her own path.
We discuss what she did, the mindset she needed to find, and a little bit about how finding the right sleep doctor who clued her in to the importance of circadian rhythms got her to where she is today. Her experience is very relatable to anyone who has had a chronic condition, and I think many will get tremendous benefit from this interview and her book, coming soon.
Her book is meant to encourage people with any sort of adversity in life to find their way.
As a patient advocate, her hope is also to bring attention Lyme disease and the people affected by it.
She is currently seeking representation for her second book, One Tick Stopped the Clock, a riveting memoir that explores questions of identity and belonging through the lens of a young person whose life has been involuntarily interrupted.
Fluorescent Image of Borrelia, the Causative Agent of Lyme Disease.
Click on link for picture. Permission granted by Dr. Benjamin L. Clark, University of Minnesota Medical School, Director, Bridges to the Baccalaureate Degree Program, Director, Pathways to Advance Degrees in the Life Sciences, 218-726-6587
Green is the intracellular Borrelia, blue-purple is the nucleus of the macrophage, a type of white blood cell of the immune system that is supposed to engulf and digest pathogens and anything else considered a foreign invader.
The red is a cell surface marker (CD86) known as Cluster of Differentiation 86, a protein expressed on antigen-presenting cells that provides costimulatory signals necessary for T cell activation and survival. It is the ligand for two different proteins on the T cell surface: CD28 and CTLA-4. CD86 works in tandem with CD80 to prime T cells. Co-stimulation is an essential step in the induction of adaptive immune responses.
There are probably 4 or more spirochetes in the phagosome (a vacuolewithin a phagocytethatcontainsbacteria or otheringestedparticlesthatbecomesfusedwith a lysosome which functions as the digestive system of the cell).
Dr. Clarke’s future work will be to study that internal chamber and how the spirochete potentially thrives.
When it is proven & accepted that Bb infects white blood cells, it will give a potential answer to some late-disseminated Lyme cases as an immune-deficiency syndrome demonstrating why some patients have frequent and prolonged infections and may acquire new allergies as well as Mast Cell issues.
I opened a file drawer and pulled out 12.4 pounds of medical records organized in two large binders. Tucked inside the top binder’s front pocket was a grainy photo of my husband and me sitting on a misty beach on a small island near Martha’s Vineyard in Massachusetts. My husband, slim and fit, smiled at the camera, blissfully ignorant of what was about to happen. Our two sons, 10 and 12 years old, were just out of the camera’s range, playing in the surf. There was a date stamp burned into the lower right corner of the photo that said July 22, 2002.
This was our last day of perfect health.
What followed was years of misery that started after my husband and I were bitten by unseen ticks. My tick had secretly buried itself at the back of my head, creating a chronically weeping lesion, a tick bite granuloma, that a year later would have to be surgically removed. My husband never figured out where he was bitten. Eventually, we both tested positive for Lyme disease bacteria and malaria-like Babesia parasites. While most tick-borne diseases can be cured with an early dose of inexpensive antimicrobial drugs, the delays in our treatment resulted in a chronic condition, and we joined the estimated 1 million to 3 million people in the US who suffer from persistent Lyme disease symptoms.
I was an engineer trained to solve complex problems and a science writer by profession, so as soon as I was diagnosed, I began reading everything I could about Lyme disease. It quickly became clear that there was a puzzling gap between how the medical establishment viewed the disease and how it was experienced by tick-bitten patients.
The academic researchers who wrote the clinical guidelines for Lyme disease said it was easy to diagnose, treat, and cure. Lyme patients insisted that the tests and symptom lists were inaccurate and that the recommended treatment — a short course of antibiotics — wasn’t curing the disease in all cases. In the face of all these contradictions, I started searching for answers, and along the way I produced a documentary and a book that explored these issues.
Bottom line: The tick-borne disease problem is much more serious and widespread than most people realize, with reported cases of Lyme disease tripling in the United States since the late 1990s. Based on more than a decade of research, I believe our medical system is structurally designed to marginalize and misdiagnose tick-borne disease patients.
The slide into a mysterious illness
A week after my husband and I returned to California from Martha’s Vineyard, we both experienced horrible flu-like symptoms. I was so weak, I had to crawl up to my second-floor bedroom. We went together to see the doctor on call at our community clinic. I told her about our Martha’s Vineyard vacation and suggested that we might have Lyme disease. She dismissed the idea and told us we probably had a virus and that we should come back if symptoms got worse. The next week, we returned to her office sicker than the week before. She still thought it was a virus, but she gave us a referral to see an infectious diseases specialist.
We couldn’t get an appointment with the specialist until December 5 — more than five months after leaving Martha’s Vineyard. During our 10-minute appointment, I told him about the Lyme problem on the island, but he wouldn’t test for it for reasons he didn’t explain. Instead, he tested us for parvovirus and gave us three weeks of a drug called iodoquinol to treat for possible intestinal parasites.
This drug gave us the first relief from symptoms since our vacation, but once the course ended, our symptoms returned more serious than ever, with waxing and waning combinations of exhaustion, brain fog, constipation, explosive diarrhea, head/neck/muscle aches, traveling nerve pain, twitches, blurry vision, light and sound sensitivity, loss of time/place/self, and the inability to read, write, or carry out the cognitive tasks required for daily living.
In January, I called the infectious diseases doctor in tears, begging for more antibiotics, but he refused, saying, “We can’t treat you based on a positive response to drugs.” Then he said he thought we were suffering from a “psychosomatic couples thing.”
I decided to look for another doctor. It was May — 10 months after our trip — before we could get an appointment with two infectious diseases doctors at a nearby academic medical center. They ordered an array of tests, including one for Lyme disease. All the tests came back negative except for my Lyme test. My husband’s Lyme test came back negative. The doctor said my test was a false positive and he was going to ignore it.The younger of the two doctors told us that the odds of us both getting Lyme disease would be like winning the lottery. Then the more senior doctor fired us as patients, saying that he didn’t have the tools to treat people like us.He recommended that we seek counseling for depression.
At this point, I was so incapacitated that I had to shut down my tech marketing business. My husband, a Silicon Valley engineer, went to work sick every day because we needed his employer health insurance. We realized that we might never recover. And in the middle of the night, our inflamed brains churned on one thought, never spoken aloud: What will happen to our boys?
With the first solid lead in our case in 10 months, a positive Lyme test, we found a reputable doctor who specialized in tick-borne diseases through a Lyme support group, and we started down the road to recovery.
The obstacles to getting diagnosed for Lyme disease
It took 10 doctors, a year, and $60,000 to finally diagnose our two serious tick-borne diseases. By then our microbial invaders were deeply entrenched in our brains and tissues. It took another six years of on-and-off antimicrobial treatments to return to health. Because of lost wages and medical expenses not covered by insurance, we burned through our savings and our sons’ college funds. We had to take out a home equity loan to make ends meet.
Yet I consider us among the lucky Lyme patients. Unlike many of the hundreds of patients I encountered during the filming and promotion of the Under Our Skin documentary, we were able to return to work. We’ve been doing well for years. My recent interviews show that even now, years after our ordeal and with Lyme cases increasing, patients still face obstacles in getting diagnosed.
Based on my book and film research, I believe that the root cause of the Lyme misdiagnosis problem is the persistent mythology that the disease is overdiagnosed and that the testing is accurate. The chief proponents of this point of view recently published “Lyme Disease in 2018,” a Viewpoint essay in the prestigious Journal of the American Medical Association. Throughout the essay, the authors minimize the impact of the Lyme problem, and in the abstract, they say
“there has not been a statistically significant increase in the number of reported cases of Lyme disease in the United States during the most recent 4 years (2013-2016) for which data are available.”
This is in stark contrast to the April 2019 statement on Lyme disease from the Centers for Disease Control and Prevention, which said Lyme is spreading rapidly into new geographical areas and that “Tickborne diseases increasingly threaten the health of people in the United States.” While most Lyme cases are concentrated in the northeastern and north central states, there are reported cases of Lyme in all 50 states today. In 2017, there were almost 60,000 cases of tick-borne diseases reported to the CDC.
The scientists at the CDC who study the spread of diseases now say, “Reported cases capture only a fraction of the overall number of people with tickborne illnesses.” The CDC is “unclear” on the reasons behind the rapid spread of ticks and related diseases, though they cite change in land use and climate patterns as important factors.
As we found out the hard way, ticks spread many other diseases, many of them deadly, and the symptoms of mixed tick-borne diseases — Rocky Mountain spotted fever, babesiosis, and Lyme disease, to name a few — are not well documented in the medical literature. Spotted fever can send people into a coma within 14 days. Babesiosis, a red blood cell infection, can be fatal for people with damaged or missing spleens. If Lyme disease is not treated promptly, it can lead to life-threatening cardiac manifestations and chronic neurological problems. In hindsight, it’s easy to see how our whack-a-mole mix of symptoms, especially the brain inflammation and pain, unmeasurable and invisible to physicians, made us seem like hypochondriacs.
Few physicians realize that the recommended two-tiered Lyme disease testing protocol is outdated and inaccurate. One 2007 study in the British Medical Journal found that the protocol missed “88 of every 200 patients with Lyme disease.” Another UK meta-analysis of Lyme test kits, published in the International Journal of General Medicine on November 18, 2016, concluded: “An important clinical implication of our conclusion that current Lyme testing lacks sensitivity is that many genuine cases of LB [Lyme borreliosis] may be underdiagnosed.”
Rather than measuring for the physical presence of the Lyme microbe, the commonly used tests rely on the measurement of a body’s antibody response to the microbe. So a Lyme-infected person might test negative in the first month of infection if their immune system hasn’t produced enough antibodies to be measured. Or, in my husband’s case, if the antibodies at the time of testing were tied up fighting Babesia, the Lyme antibody test might read negative. After his germ load was lowered by a short course of antibiotics, he tested antibody-positive for both of his tick-borne diseases.
A better approach to testing would be to screen blood for specific DNA markers of several tick-borne diseases in one run, but it will take time for these tests to move from the research labs to clinical use.
What to do if you’re bitten by a tick
People ask me what they should do to avoid what my husband and I went through. I tell them that prevention should always be a top priority: pulling socks up over pant legs, spraying repellent on clothing, and doing daily tick checks. Still, sometimes ticks, with skills honed over 120 million years of evolution, slip past those defenses.
Ticks are sewers of infection that can transmit multiple species of disease-carrying organisms into your bloodstream in a matter of hours (though your chances of getting Lyme disease are low if a tick is attached to you for 36 hours or less, according to the CDC). Once a tick taps into a blood vessel, it releases chemicals that suppress the immune system for a week or more, giving the germs a dangerous head start. So if you suspect you may have acquired a tick-borne disease, your number one goal should be to start treatment as soon as possible.
If you capture the tick that bit you, send it to a lab that will analyze it for its microbial hitchhikers. The Bay Area Lyme Foundation will test ticks for free using advanced techniques at the University of Northern Arizona. It’s not fast, but by sending in your tick, you are participating in a citizen science project to track the spread of ticks and associated diseases. Ask your doctor if you can start taking antibiotics while you wait for results. If you have a rash, take a picture of it next to a ruler so you can see if it expands over time, a sign that you have Lyme disease. Know that the testing on the tick is not foolproof — both positive and negative results can be misleading — so keep an eye out for symptoms no matter what the results are.
Find a doctor experienced in treating tick-borne diseases. If you had a brain tumor, you’d probably seek out a doctor with lots of experience treating that specific type of cancer. The best way to find physicians trained in treating complex tick-borne diseases is to contact the International Lyme and Associated Diseases Society, a nonprofit organization that can send you a list of practitioners in your area. Don’t waste valuable treatment time trying to convince an inexperienced physician that you’re really sick. Find an expert who knows which drugs are most effective for each of the tick co-infections and in what order to treat them.
Treatment for Lyme is too often delayed — but hope is on the horizon
As I was writing this story, I showed the 2002 beach photo to my husband and asked him what he thought of the couple in it, us, 17 years ago.
“Naive,” he said.
“If you could turn back time, would you do it?” I asked.
Now that I’m on the other side of my tick-borne illnesses, I spend a lot of time thinking about how to help others avoid the ordeal that my family went through. Here I offer up my personal story as a burnt offering, a cautionary tale, in the hopes that others might avoid the mistakes we made.
The reasons behind the misinformation associated with tick-borne diseases are multifaceted and complex. One of the primary reasons Lyme disease has been ignored by the pharmaceutical industry, a force for good in other diseases, is that there’s no money in it — the cure is an early dose of off-patent, cheap antibiotics. While there’s a profit potential with a Lyme vaccine (one is in development in France), it offers no protection against other serious tick-borne diseases, so it may never be widely adopted. With no accurate diagnostics on the market, Lyme patients are often misdiagnosed with fibromyalgia, chronic fatigue, multiple sclerosis, or irritable bowel syndrome. So for pharma companies, the real money is in treating the daily symptoms of chronic Lyme disease — pain, depression, and inflammation — with lucrative blockbuster drugs.
There is no medical insurance reimbursement code for chronic Lyme disease. Medical insurance companies are under tremendous pressure to reduce costs, and labeling chronic Lyme as a “syndrome” rather than a legitimate disease gives them grounds to deny the expensive ongoing care costs of these very sick patients.
A close examination of the backstory of Lyme disease shows other factors that have corrupted the foundational science of Lyme disease. In Under Our Skin, I explain how researchers’ financial interests in vaccines and test kits may have negatively influenced the original definition and diagnostic recommendations for Lyme disease. In my book Bitten, I explore evidence that suggests the initial Lyme outbreak was caused by a bioweapons release of an organism that was left out of scientific publications. This book, a call to action for researchers, asks the question,
“Could an unacknowledged human-engineered microbe be contributing to the confusing set of symptoms that tick-bit patients are experiencing today?”
This leaves us with a medical system that is structurally designed to delay treatment and do harm to tick-borne disease patients.
But there is hope on the horizon.
This year, the CDC announced that it will improve its passive system for tracking tick-borne diseases by funding a more coordinated national surveillance program. And there are a few companies and universities working on more accurate, faster diagnostics for all the tick-borne diseases. But these structural fixes won’t be done anytime soon.
In the meantime, the best advice I have to offer is to take charge of your health care. Do your research before you go to the clinic, and find a physician who will be open-minded about the real risks of tick-borne diseases. Realize that you might have to fight to be tested and to be treated with protocols that will restore your health.
So thankful for Kris Newby and all she’s done for the Lyme/MSIDS community.
Please note the horrific way she and her husband were treated by doctors.Unbelievable – except this story plays out again and again and again. Time for doctors to wake up and treat this with the attention it deserves.
“A close examination of the backstory of Lyme disease shows other factors that have corrupted the foundational science of Lyme disease. In Under Our Skin, I explain how researchers’ financial interests in vaccines and test kits may have negatively influenced the original definition and diagnostic recommendations for Lyme disease. In my book Bitten, I explore evidence that suggests the initial Lyme outbreak was caused by a bioweapons release of an organism that was left out of scientific publications. This book, a call to action for researchers, asks the question,
‘Could an unacknowledged human-engineered microbe be contributing to the confusing set of symptoms that tick-bit patients are experiencing today?'”
“The CDC is “unclear” on the reasons behind the rapid spread of ticks and related diseases, though they cite change in land use and climate patterns as important factors.”
Erroneous research by Ontario public officials completely ignores and dismisses previous published work and instead creates their own reality to show a gradual tick expansion northward due to supposed climate change.
The problem is tick populations already existed in those locations. Scott’s most telling statement for patients to be aware of regarding research on climate change and ticks is this theory would,
“explain to the public a reason for not tackling this serious health care issue earlier. The tick problem was programmed for the future. Thus, ill-founded statistical analyses culminated in fabricated erroneous data and, ultimately, resulted in a series of maps that turned out to be flawed science.”
Although conspiracy theorists have suggested — falsely — that Lyme disease was created in a U.S. military lab, it is true that in the years following World War II, the U.S. employed top German scientists who explored the tick’s potential in biological warfare for Nazi Germany. The researchers were investigating the tick’s ability to spread pathogens across wide areas with the potential to incapacitate entire populations.
Seventy-five years later, the tick timebomb is detonating on its own. Thanks to climate change, globalization, and other factors, ticks are not only proliferating but also becoming more malignant, more aggressive, and more likely to carry infection. A public health crisis is hiding in plain sight,
It’s far easier to blame the climate & land usage than it is to look inside government experiments gone awry.
Kelly Oggenfuss is walking into the woods. Leading her team of four young researchers through a thicket of slender oak trees, she doles out assignments by letters corresponding to a grid. As early morning light filters through the canopy, Oggenfuss and her colleagues pull on latex gloves then disperse to gather surveillance data.
For 20 years, this has been a post-dawn ritual for Oggenfuss, a senior research specialist at the Cary Institute of Ecosystem Studies in Millbrook, New York, a bucolic town in the state’s Hudson Valley region. Four times a week from April to November — traditionally the most active tick season in the Northeast — she leads a platoon of field researchers as they don white coveralls, drive a pair of old Chevy Tracker SUVs down an overgrown dirt road, and hike to a five-acre tract designated “Henry Control” on the grounds of the institute. Their mission is to seek out and study ticks in one of the most tick-infested areas in America.
Oggenfuss and the others work methodically across a grid of 242 spring-loaded box traps, checking for rodents lured overnight by whole-oat seeds. Sharing updates via walkie-talkie, the team gathers after a squirrel is found in one of the traps. The new researchers transfer the animal to a plastic mesh sleeve and take turns examining it. A similar process unfolds with chipmunks.
Most often, the traps capture mice, which Oggenfuss and her team carry with them, still in the trap, until the grid check is complete. Then the group convenes around a collapsible table. As one researcher records data (grid location, gender, tag number, etc.), the others apply tags to the mice and collect blood, urine, and stool samples. Finally, Oggenfuss and her team meticulously comb the mice with tweezers and blow on their fur, pushing it aside in search of ticks.
“Look there’s a nymph,” says Oggenfuss. “And I’ve got one, two, three larvae. Can you see them?” She pulls a patch of the mouse’s fur back to reveal a blacklegged tick no bigger than a poppy seed burrowed into its head. The larvae are barely perceptible.
A researcher named Agi holds up another mouse. “Look,” she announces. “That’s a larva on top of that nymph. We have a co-feeding situation here.” The theory is that their feeding sites are so close that pathogens move between them easily, Oggenfuss explains. The potential result is one tick sharing infectious material directly with another through the host mouse as if it were a straw, speeding the spread of disease. “That could have an effect on infection prevalence,” Oggenfuss adds. “It’s one of the things we’re studying.”
Since 1992, the Cary Institute has been compiling a record of tick ecology that they believe to be the longest continuous study of this kind in the U.S. and possibly the world. Mostly its researchers encounter the blacklegged, or deer, tick (Ixodes scapularis), but in recent years, they’ve also been seeing increasing numbers of lone star ticks (Amblyomma americanum), which are native to the American Southeast but now range from northern Mexico to Canada. Over the years, an alarming number of ticks in the surrounding area have been revealed to carry Borrelia burgdorferi, the bacteria that causes Lyme disease, while others have tested positive for the pathogens that cause other tick-borne illnesses, including the potentially fatal Powassan virus.
Because ticks acquire pathogens from hosts, understanding tick-borne diseases means understanding ticks’ so-called disease reservoir, especially mice. If the urban rat was the primary carrier of bubonic plague, the country mouse is it for Lyme disease. And just as the fleas that fed on infected rats spread the plague, ticks that feed on infected mice transmit Lyme.
On this early May morning, the team’s trap yield is relatively modest — four mice, two squirrels, and a chipmunk. “It’s early days still,” says Oggenfuss. In August, during the so-called larval peak, the researchers sometimes catch as many as 220 mice and can find 150 or even 200 tick larvae crawling on a single mouse. It can be an unnerving moment. “When the ticks are looking for a feeding site,” Oggenfuss says, “the mouse fur just seems to move on its own.”
The process for counting ticks not affixed to hosts is called a drag — the researchers pull a one-square-meter sheet of fabric along the ground for 30 meters then tally the number of ticks affixed to it. Oggenfuss holds the Cary Institute record for ticks collected in a single drag: 1,700. As horrifying as that haul was — and it would, by extrapolation, put the tick population on the Cary Institute’s 2,000-acre campus at 2 billion — Oggenfuss is quick to note it was exceptional, and tick density is irregular. Her more conservative calculations of average tick populations, based on drags done during the same time of year (August, the larval peak), are only reassuring by comparison: upward of 20,000 ticks per acre, more than 100,000 on the Henry Control grid, and more than 40 million on the Cary Institute grounds.
The scary thing is, that’s nothing. Experts say the worldwide tick population is exploding,triggering a dramatic spike in the incidence of Lyme disease and a rise in other tick-borne illnesses, some of which, like Powassan, are far more dangerous than Lyme.
First identified in 1975 in the leafy New England town of Old Lyme, Connecticut, Lyme disease has now reached what experts consider pandemic proportions. According to the Centers for Disease Control and Prevention (CDC), the number of confirmed cases of Lyme disease in the U.S. has more than doubled in the two decades leading up to 2017 (the most recent year for which final figures are available) and increased 17% from 2016 to 2017 alone. More than half the counties in the U.S. are considered high-risk areas for Lyme, according to the CDC, and in some areas, as many as six out of 10 ticks carry the infection.
“It’s been a relentless expansion since the 1980s,” says John Aucott, director of the Lyme Disease Clinical Research Center at Johns Hopkins University School of Medicine. “There may be down years and up years, but the trends are in place, and there’s no indication that they’re going to reverse.”
We now live in a frightening new normal: It’s estimated that 300,000 people contract Lyme every year in the U.S., with victims found not just in traditionally tick-heavy areas like upstate New York and Maine, but also in all 50 states and Washington, D.C. While most people are cured quickly with antibiotics, some go on to experience lingering symptoms characteristic of Lyme, like headaches, fatigue, and joint and muscle pain, for months or longer after they’ve been treated, a condition known as post-treatment Lyme disease syndrome (PTLDS). According to a recent study led by experts at the Brown University School of Public Health, the number of people in the U.S. with PTLDS was estimated to be 1.5 million in 2016 and is predicted to rise to nearly 2 million by 2020.
“There is little doubt that [Lyme disease] is pandemic. It calls for a huge national and concerted international effort to bring it under control.”
Tick populations now exist on every continent, even Antarctica, and Lyme disease can be found throughout most of Europe, where it ranks as the most common vector-borne disease, and beyond. “To me, there is little doubt that it is pandemic,” says Mary Beth Pfeiffer, author of Lyme: The First Epidemic of Climate Change. “It’s in China, Russia, Japan, Australia. It’s moving fast into Canada. It is all across the U.S. It calls for a huge national and concerted international effort to bring it under control.”
The incidence of other tick-borne illnesses is also sharply rising. According to the CDC, the occurrence of those diseases in the U.S. has nearly tripled since 2004 and increased more than 22% from 2016 to 2017. In addition to Lyme, ticks transmit a slew of pathogens, including those that cause babesiosis, ehrlichiosis, anaplasmosis, southern tick-associated rash illness, tick-borne relapsing fever, tularemia, Colorado tick fever, Q fever, Rocky Mountain spotted fever, and Powassan encephalitis. Most of the bacterial diseases are treatable if diagnosed early. Others, like Rocky Mountain spotted fever, are potentially fatal, particularly in children, if not treated quickly. Incidences of spotted fever rickettsiosis, which includes Rocky Mountain spotted fever, increased more than 12-fold from 2000 to 2017 (up from 495 to 6,248). And while more rare still, cases of Powassan virus, which can kill one in 10 people who are infected and for which there is no treatment, are rising as well. In 2008, only two cases were reported. In 2016, that number jumped to 22 and again in 2017 to 33.
“Ticks account for more diseases than all other biting insects and arthropods in the United States,” says Ben Beard, deputy director for the Division of Vector-Borne Diseases at the CDC. “It’s hard to know what the maximum or the ceiling might be. All we can say is that the number of cases is growing every year.”
Alarms are going off all over the globe. South Africa, where tick-bite fever (a form of rickettsias) is common, has seen an increase in incidences of Crimean-Congo hemorrhagic fever (CCHF), which is deadly in 30% to 40% of cases. The tick that carries CCHF, a native of sub-Saharan Africa and eastern Europe, has been found in Spain, Portugal, Germany, and the United Kingdom, where it is believed to have been brought from Africa by migratory birds. Bites from the lone star tick have been shown to cause alpha-gal syndrome, which manifests in rapid-onset allergies to meat, typically beef and pork, that can result in unexplained anaphylactic reactions. There is no treatment, other than eschewing the consumption of red meat.
In North America, news reports in Maine and southern Canada this spring featured a shocking number of sightings of what are called ghost moose — skeletal-looking, malnourished, denuded animals that have rubbed off their fur in response to tick irritation after hosting up to 75,000 feeding ticks through the winter. Many emerged anemic after being the source of so many blood meals, and a number of calves died after losing too much blood to ticks — a vampire-like end to life known as exsanguination.
If Lyme disease has reached pandemic proportions, why haven’t we heard more about it? Because, experts say, Lyme doesn’t strike fear into people’s hearts the way some other illnesses, like Ebola or Zika, do. People respond to dramatic pictures or dramatic mortality, says Aucott.
“It’s hard for them to have a perspective on the real impact of Lyme disease because it doesn’t cause visible changes. People with Lyme disease don’t look sick.”
Lyme disease and dental health: What you need to know
Lyme disease, also known as Lyme borreliosis, is caused by the tick-borne spirochete bacterium Borrelia burgdorfer.
Lyme disease is a multisystem inflammatory disease, and neurologic, articular, and cardiac manifestations may follow untreated early infection. While the B. burgdorferi bacterium does not make toxins or cause direct tissue damage, local inflammation results from host response mechanisms.
Three phases of general clinical manifestations
Early localized: distinct, bull’s eye or target skin lesions in warm areas of the body (groin, axilla or belt line) that may itch, burn or hurt.
Early disseminated: if treatment is not initiated involvement of brain or heart may occur.
Late disease: also called as Post Treatment Lyme Disease Syndrome (PTLDS), this phase leads to muscle and bone involvement.
The link between Lyme disease and dental health
It has been observed that Lyme and many other chronic diseases are fed by the unique bacteria that develop in root canals and where teeth have been extracted. Lyme bacteria exists in the teeth, not in the enamel. The spirochete bacterium love to occupy in the dentin and some three miles of tiny tubules.
Its clinical manifestations may include facial and dental pain (tooth ache), facial nerve palsy, headache, temporomandibular (jaw) joint pain, and masticatory (chewing) muscle pain. The effects that can precipitate when performing dental procedures on a patient with Lyme disease must also be considered. 1
Symptoms of oral presentations
Symptoms associated with Lyme disease include headache and facial pain that often mimics dental pathology and temporomandibular (such as TMJ) disorders.
Other oral symptoms can be:
Pulpitis, or the oral inflammation of dental pulp
Bell’s palsy, or partial facial paralysis
Cranial nerve palsy may occur in early disseminated disease. Bell’s palsy is a form of usually temporary facial neuropathy resulting from inflammation/damage to the seventh cranial nerve (i.e., facial nerve)
Involvement of the saliva producing glands may manifest as brief inflammation of the gland
Getting the right treatment
Because Lyme bacteria resides in the mouth, the disease can cause tooth pain unrelated to cavities or any other dental issues, which might indicate Lyme disease to your dentist. However, the misdiagnosis of any of these symptoms by a dental professional could result in unnecessary procedures, like root canals. Knowing the above oral symptoms can help a patient identify Lyme disease early.
Fortunately, oral symptoms will disappear after a successful treatment. That doesn’t mean you should drop your guard though. Another tick bite could mean another bout of Lyme disease. People who have been bitten by a tick or who live in tick infested regions should take these oral symptoms and other symptoms of Lyme disease seriously.
If a patient is worried about contracting Lyme disease, he/she should visit a medical care provider and dental hygienist to check the mouth for indications of Lyme.
Lyme disease: considerations for dentistry. J Orofac Pain. 1996 Winter;10(1):74-86.
Lyme disease awareness for the New Jersey dentist. A survey of orofacial and headache complaints associated with Lyme disease. J N J Dent Assoc. 1998 Winter;69(1):19, 21, 62-3 passim.
Lyme disease: College of Dental Hygienists of Ontario
Lyme disease is not just an inflammatory disease. Let us never forget it is bacterial but also often viral, fungal, and parasitical due to the coinfection involvement in many cases. While these pathogens cause widespread inflammation, it should never be treated solely as inflammatory – which would only be a bandaid on an infectious disease that requires antimicrobials.
Many never go through the three “phases” or “stages” of Lyme or if they do, they can be in any order. The EM rash is often absent.
Bacterial arthropod-borne pathogens are a common cause of fever in Africa, but their precise impact is unknown and usually underdiagnosed in the basic rural laboratories of low-resourced African countries. Our aim was to determine the prevalence of arthropod-borne bacterial diseases causing fever among malaria smear-negative patients in a rural hospital located in Ethiopia. The study population included patients aged 2 years or older; referred to Gambo Rural General Hospital (West Arsi, Ethiopia), between July and November 2013, for fever or report of fever in the previous 48 h; attending the outpatient department; and testing negative for malaria by Giemsa-stained thin blood smears. We extracted DNA from 394 whole blood samples, using reverse line blot assays of amplicons to look for bacteria from the genera: Anaplasma, Bartonella, Borrelia, Coxiella, Ehrlichia, Francisella, and Rickettsia.
Thirteen patients showed presence of DNA for these pathogens: three each by Borrelia spp., the Francisella group (F. tularensis tularensis, F. tularensis holartica, and F. novicia), Rickettsia bellii, and Rickettsia Felis, and one by Bartonella rochalimae. Thus, in this rural area of Africa, febrile symptoms could be due to bacteria transmitted by arthropods. Further studies are needed to evaluate the pathogenic role of R. bellii.
What if some of this is mosquito-borne as well? We frankly don’t know because the transmission studies are screaming to be done.
This Finnish doctor uses herbs to heal Lyme disease and co-infections
By Marjo Valonen, MD
It was the happiest moment of my life, to hold my twin babies for the first time. I am so glad that I didn’t know what was ahead of me: that I would be bedridden and seriously ill for years. That I couldn’t walk, play with my kids, or have the strength to sing to them. Even smiling at them would require all the energy I could muster.
Ever since I was six years old, I wanted to be a doctor. Everything about humans and human health interested me. My first dream was to be a brain surgeon, but when I was actually working as a surgeon, I realized that this wasn’t quite what I wanted. I aspired to understand the whole human body, instead of settling for any single specialty. My thirst for knowledge drove me instead into looking at traditional Chinese medicine and then integrative medicine.
So, when I fell so ill after giving birth to our twin boys and one and a half years later to our daughter, I was confused. Confused, because I thought that I already knew so much. I consulted countless colleagues, the best in their field, but no one knew what was wrong with me. And sadly, it seems that not knowing, is for many doctors, too difficult a burden to bear. They didn’t think: oh wow, this is something I don’t know, let’s study more and find out! Instead, they got angry at the patient that dared to have symptoms or illness that they didn’t have answers for.
My symptoms included extreme fatigue. Even keeping my eyes open felt like too much work. If I tried to get up and walk, I fainted. So, confined to my bed, I relied on my husband for everything. He brought me my food, carried me to the bathroom, took care of our three small children and maintained his own work outside the home. He is the real hero of this story!
Wracked with pain, I had sinus infections – with pus constantly oozing out of my sinus cavities – for which I underwent numerous operations. However, when doctors couldn’t find anything wrong with my lab tests, they told me that I was just imagining it all, that it was all in my head, and that I was causing myself to be ill. One colleague even said to me, “You’re just lazy. You don’t want to work.”
The search for a cure
The worst of it lasted about two years. After that, I was able to sit and walk a bit, but I still couldn’t do much. I started searching for answers on the Internet and reading recommended books. I did everything I could think of: I healed my gut, I found many food intolerances, balanced my hormones, and supported my thyroid and adrenals.
Finally, I ran into the question of chronic infections. I ran tests on myself and confirmed my suspicion of having Lyme disease. It turns out I had loads of other infections, as well. That started me on the next step of my journey back to health: finding out how to treat these infections.
Initially, I was told that I had to treat it with antibiotics. This didn’t sit well with me – with how I think about life and how we should treat our bodies. But I eventually decided to try antibiotics, since that was the conventional procedure. ILADS is doing great work regarding Borrelia, and I tried the combination of antibiotics suggested by ILADS. But they were too hard on my gut. My system just couldn’t handle them.
The Cowden Protocol
I started looking at herbal solutions. I loved learning about the many different ways herbs can help and support us. I tried many different protocols but none of them worked very well for me. Then, I heard from my colleague Dr. Armin Schwarzbach about the support protocol developed by Dr. Lee Cowden, called CSP (Cowden Support Program). Imagine my joy and gratitude when after a month or two I started feeling better. I could walk and hug my kids and enjoy life!
Sharing my own healing with others
At last, after such a long period of professional inactivity, I began seeing patients again. As I encountered those who had the same problems that I had, I used the Cowden Protocol with them. We’re still amazed at how well it works! I’m glad that I was able to find a way to help my patients without having to use antibiotics.
Typically, patients don’t have many positive test results at first. These usually appear after a short period of initial treatment. When you give patients herbs, their immune system starts fighting against the infection. Some patients are so sick when they first come to my office that their immune system is totally shut down and can’t fight anything. In that situation, all results will be negative.
If their doctor doesn’t know this and understand the underlying mechanisms, they will just look at the negative lab results and declare the patient healthy, when in fact these are the sickest cases needing the most help and support. That is why the diagnosis needs to be based on clinical picture and symptoms, not just lab results.
Of the symptoms, pain and fatigue are typically the worst part of being ill. We ask them to rate both between 0 and 10, with 10 being the worst imaginable. We do this at the beginning of treatment, and we then follow their self-assessments.
Sometimes, both objective lab results and subjective self-assessments improve at more or less the same rate. When that happens, we’re really happy and can trust that the treatment is working. One or the other isn’t enough. If the lab results are great, but the patient is fatigued and in pain, then the infection might just be hiding somewhere. Then, you have to sort of dig it out.
Cure or remission?
Can Lyme disease be fully cured? Or, must we be content with tolerable remission of active symptoms? This is a good question.
I think that we can get our patients cured in such a way that Lyme doesn’t affect their life anymore. The question of whether or not we can ever be totally rid of Borrelia microbes cannot really be answered, since they can spread everywhere within the body. However, we all carry all sorts of microbes and parasites within us, at all times. That’s life. The question is, “Who is in charge: you, or the microbes within you?”
I agree with the assessment of the American cardiologist Dr. Thomas Levy: namely, that Borrelia is normally a commensal bug, requiring an already compromised autonomic nervous system to become infectious.
I contracted Lyme in the womb, from my mother. I carried it within me throughout my early years without noticing it. After the twin pregnancy and the birth of my daughter, during which I had many complications, my immune system took a hard hit. And, that’s when “the enemies” got the upper hand, moving from the incubation state to the acute one.
The immune system is key
I am convinced that my role as a doctor is fundamentally to support my patients’ immune systems. Only then can these microbes be defeated. Sometimes my patients express their concerns about ticks being everywhere. I remind them at those times that we can’t live in a bubble. Some have famously tried it, but it isn’t a very good solution. We neither can nor should stop our children from running and playing in the woods. The best thing is to take care of our own body and immune system so that we are strong enough to resist all of this.
This leads to the whole idea of preventative wellness. This is where medicine is seen not so much as treating diseases as helping people so they do not become ill in the first place. That’s one of the reasons why I think Dr. Cowden’s program is simply genius, because the use of antimicrobial herbs is constantly changing, affecting different kinds of microbes – not just Borrelia, but also the co-infections. The antimicrobial herbs, moreover, are complemented by detoxifying and anti-inflammatory ones, as well as herbs that support energy production. Some people think that it’s enough to take antibiotics or even antimicrobial herbs. But, that’s just killing pathogens. I advocate a much wider approach, one that supports the whole system. Uprooting is not enough. You have to replant.
What happens after symptoms disappear?
Our patients receive an ongoing maintenance program from us for the rest of their lives. By the time that they are fully functional again, we’ve known them for several months or, in the harder cases, several years. So, we usually have acquired a good idea of their genetic composition and their ability to withstand these things on their own. Hence, someone with a robust constitution may need only a basic multi-vitamin and some detox and supporting herbs.
On the other hand, a very fragile person might need other things to support them. I myself have genetic problems with my immune and detox systems, but I’m doing fine with herbs. I am still taking selected herbs as well as some important immune supporting supplements and I’ll never give them up! By taking care of myself, I can live a normal life.
In fact, I travel throughout Europe teaching about herbs. When I speak at conferences and other venues, I like to share patient cases. They are real life, allowing me to demonstrate what we are doing and how well it’s working. I give detailed information on what herbs I use and in what dosages. My mission, the reason why I’m going around Europe, and now also the States, talking about herbs, is to teach other professionals how to help others in the same way.
So, what began as my own personal interest has become my life’s work.
The future of medicine
I believe we’re living already the future of medicine. It’s so great that we have researchers like Professor Eva Sapi, of the University of New Haven. So, we’re constantly getting more information on how herbs work. Of course, there are always those people who think that herbs can’t possibly be that effective. They need to be reminded that the Nobel Prize for Medicine was given in 2015 to Professor Tu Youyou, a pharmacologist at the China Academy of Chinese Medical Sciences in Beijing, in recognition of her work with the herb Artemisia annua. Also, about 50% of conventional medicines are developed from natural substances, including herbs. But, since you can’t patent something derived from nature, then medical companies have to change or break these substances in order to obtain patents and then charge big prices for their products.
Returning to the question of antibiotics, I think we often use them irresponsibly, which leads to the loss of their efficacy. Bacterial resistance has become a big problem. It is much more difficult for bacteria to develop resistance to an herb, though, which may have tens or even hundreds of different substances with which it fights bacteria.
It’s quite easy for a bacterium to develop resistance to an antibiotic, since it is just this one thing against which it has to fight. But when you send hundreds of things against that bacterium, it has a much harder time developing effective resistance.
I don’t think it’s wrong to use antibiotics when they are needed. The problem is when we use too much of them, for minor conditions. We’re also giving them to our livestock, which results in indirect antibiotic exposure for us. What was designed to help us is really hurting us.
Bringing back hope
Lyme and co-infections can be devastating. Not just to the person who falls ill, but for their loved ones as well. Our family has been through it, and that is why I want to share my story and share my knowledge. I don’t want anyone to have to go through as much pain and suffering as I had to.
With the herbal and supplemental protocols that we use at our clinic, we’ve been able to help even the worst cases of Lyme and co-infections. Even those that have been taking antibiotics for years, without getting better. So, I don’t want anyone to lose hope – there is still lots that can be done. It may take some detective work to find the right protocols, but I am a living proof that it is possible!
Marjo Valonen, MD, is medical director of Astris Medical Centerin Helsinki, Finland. Her clinic specializes in tick-borne and other chronic infectious illnesses. She has also lectured widely at Lyme-related conferences.