Episode 57: The Science and History of Lyme Disease  Go here for Podcast.

Cindy Kennedy, FNP, is joined by journalist and author Pamela Weintraub, who discusses the science and history of Lyme disease.Pamela is health and psychology editor at Aeon, a website that covers science, health, culture and “big ideas.” She’s also former senior editor of Discover Magazine and is the author of “Cure Unknown: Inside the Lyme Epidemic.”

When Pamela learned that her oldest son tested positive for Lyme disease, she thought she had found an answer to the symptoms that had been plaguing her family for years. But her nightmare had just begun. Almost everything about Lyme disease turned out to be deeply controversial, from the microbe causing the infection, to the length and type of treatment and the kind of practitioner needed.

On one side of the fight, the scientists who first studied Lyme describe a disease transmitted by a deer tick that is hard to catch but easy to cure no matter how advanced the case. On the other side, rebel doctors insist that Lyme and a soup of “co-infections” cause a complicated spectrum of illness often dramatically different – and far more difficult to treat – than the original researchers claim.

Instead of just swollen knees and a rash, patients can experience exhaustion, disabling pain, and a “Lyme fog” that leaves them dazed and confused. As patients struggle for answers, once-treatable infections become chronic.

Pamela’s book is a nuanced picture of the intense controversy and crippling uncertainty surrounding Lyme disease. Pamela sheds light on one of the angriest medical disputes raging today. The most comprehensive book ever written about the past, present and future of Lyme disease, “Cure Unknown” exposes the ticking clock of a raging epidemic and the vulnerability we all share.



Weintraub’s book, “Cure Unknown, Inside the Lyme Epidemic,” is as relevant today as when it was written.  Little has changed, in fact, which is quite sad considering it’s 11 years old!

She not only writes of her own experience with her entire family which was infected, but the whole saga and all the key players.  If you want to understand the sordid history behind this madness, this is The Book.

Prevalence of Francisella tularensis in Dermacentor variabilis Ticks, Minnesota, 2017

Tory Whitten, Courtney Demontigny, Jenna Bjork, Mandy Foss, Molly Peterson, Joni Scheftel, Dave Neitzel, Maureen Sullivan, and Kirk Smith
Published Online:

Introduction: The prevalence of Francisella tularensis in Minnesota ticks is unknown. Ticks collected at seven sites were tested to determine the infection prevalence of F. tularensis in Dermacentor variabilis in Minnesota.

Materials and Methods: Ticks were collected from two properties at an epizootic site and at five long-term tick research sites. Ticks were pooled by species, sex, date, and site with a maximum of 10 ticks per pool. Ticks were bisected and homogenized; DNA from supernatant was extracted and tested by real-time PCR (RT-PCR). Twice, additional ticks were collected for bacterial culture and isolation of F. tularensis. Proportion of positive pools and minimum infection rate (MIR) were calculated.

Results: A total of 3527 ticks were tested for F. tularensis including 1601 male D. variabilis and 1926 female D. variabilis. Across all sites, 128 (34%) of 378 pools were RT-PCR positive for F. tularensis. Of 128 positive pools, F. tularensis from 96 (75%) was identified as type A; F. tularensis from 32 pools was unable to be subtyped. The overall MIR was 3.6%. The MIR was significantly lower at the epizootic site compared with Morrison County 1 (3.9% vs. 7.2%; p = 0.02) but did not differ between the epizootic site and Pine County 1 (3.9% vs. 2.1%; p = 0.49). Within the epizootic site, the MIR was significantly higher at Washington County 2 compared with the adjacent property (5.7% vs. 2.3%; p < 0.001). F. tularensis was cultured from 6 (15%) of 40 pools.

Conclusions: F. tularensis was found in ticks at a majority of sites tested. The MIR of F. tularensis in D. variabilis ticks in Minnesota varied geographically. Our findings support the hypothesis that D. variabilis plays an important role in the natural history of tularemia in Minnesota. Further ecologic studies are needed to fully understand the importance of tick species in the maintenance and transmission of F. tularensis in Minnesota.



The Dermacentor variabilis tick is a hard bodied tick, also known as the American Dog tick or Wood tick and is widely known.  It transmits Rocky Mountain spotted fever (RMSF) and tularemia to humans as well as canine tick paralysis to dogs.


Dorsal view of American dog ticks, Dermacentor variabilis (Say), with male on left, and female on right.  Credit: J.F. Butler, University of Florida

It was been suggested that adult ticks move to the edge of the roads and trails in an attempt to find a host, or “quest.” Some have hypothesized that because many animals typically follow trails, they leave an odor that attracts these ticks causing them to move toward and quest alongside trails in attempts to find a host (Mcnemee et al. 2003).

More on Tularemia:

Normally thought of as inhabiting areas east of the Rocky Mountains, the Wood tick is obviously defying entomology maps and traipsing all over – from Minnesota to Missouri, California, and most probably everywhere in-between.

I remember hearing Timothy Lepore, MD, FACS, surgeon at Nantucket Cottage Hospital, at a Lyme conference.  He explained that Tularemia is also a disease of those who work with the land such as landscapers and farmers, as well as those who get bit by a tick. There are cases reported in every state but Hawaii, and many other wild and domestic animals can be infected. The highest rates of infection are in Arkansas.  Please see this link for more details but know that this is a bioweaponized pathogen:  The WHO estimates that an aerosol dispersal of 50 kg of F. tularensis over an area with 5 million people would result in 25,000 incapacitating casualties including 19,000 deaths.

Transmission: Transmission can occur through the skin or mucous membranes when handling infected animals as well as through tick bite, contact with fluids from infected deer flies, mosquitoes or ticks, handling or eating undercooked rabbit, drinking contaminated water, inhaling dust from contaminated soil, and handling contaminated pelts or paws of animals. It can also be inhaled from infected hay, grain, or soil. Dr. Lepore had patients who contracted it from their pet dog who shook rain water on them after chewing on a dead rabbit, as well as from folks eating road kill, a person who held sick animals, and a gentleman who slept with his pet bunny.

Another reminder – don’t sleep with pets!
The fact that 35% of Minnesotan ticks are infected with Tularemia is concerning.  Spread the word.





Our next support meeting will be Saturday, March 9 from 2:30-4:30 at the East Madison Police Station Community Room at 809 S. Thompson Drive, Madison.

Our speaker will be Mike Nickel: 

Mike Nichols

Mike watched his healthy son become wheelchair bound due to Lyme/MSIDS. After going through the frustrating process of trying to get him a diagnosis and proper treatment, he founded the Wisconsin Lyme On-line Support Group to help others in 2012.

He is also a founder and past president of the Wisconsin Lyme Network.

Mike’s been helping patients for decades.  This support group will be mostly Q & A so bring all your questions on Saturday.



by Jennifer Crystal

Every day, I receive emails from people who have recently been diagnosed with Lyme disease. As most of us do when we hear a new medical term or leave a doctor’s office, these people frantically search the web looking for information. Sometimes they come across one of my blog posts. Then they write with questions about treatment, with requests for finding a good doctor and with prayers that I will be able to offer them some hope. Most of all, they want to know: “What do I do to get better?”

Because I find myself offering the same responses to many such patients, I thought I would create a “School of Lyme For the Newly Diagnosed.” Consider this a brief survey course on tick-borne illness, open to anyone who wants to learn the basics of what to do when you get (or suspect) a Lyme diagnosis.

Lesson 1: It’s Lyme, not Lyme’s!

It’s important to know the correct name of your disease! Many people mistakenly call it Lyme’s disease, assuming it was discovered by a Dr. Lyme. In fact, Lyme is named for the town in which it was first detected: Lyme, Connecticut. As for the names of co-infections, those are not as simple, but should still be part of your working vocabulary; we’ll get to those in Lesson 5.

Lesson 2: All cases are different

Everyone’s looking for a one-size-fits-all treatment protocol. Unfortunately, that doesn’t exist, and here’s why: Lyme bacteria, called spirochetes, impact every victim differently. It depends how quickly the infection was caught and diagnosed; how far it’s spread, and to where. The bacteria can affect different organs, muscles, bones and cells in different patients. It can cross the blood-brain barrier and enter the central nervous system. Moreover, there may be co-infections present—the list goes on and on. A Lyme doctor can see a thousand patients and use a thousand different protocols. Telling you what antibiotics I took won’t help you; you need to work with your doctor to figure out the best combination for you.

Lesson 3: Find an LLMD

An LLMD is a Lyme Literate Medical Doctor. This is a physician who has trained with ILADS (The International Lyme and Associated Diseases Society). Some practitioners claiming to be Lyme literate may not be versed in all tick-borne disease. The best way to know you are getting good treatment is to make sure your doctor is ILADS-trained. You can find an ILADS-trained physician in your area through Global Lyme Alliance, by clicking on

Lesson 4: Get tested for co-infections

Unfortunately, ticks don’t only carry Lyme disease. Many of them harbor what are known as co-infections: other tick-borne diseases besides Lyme. The most common are babesiosis, ehrlichiosis, anaplasmosis, and bartonella, but there are many others. It’s critical that you get tested for co-infections along with Lyme disease. If you are receiving treatment for Lyme and haven’t been tested for other tick-borne infections, you may be fighting only half the battle.

Lesson 5: Take probiotics

Antibiotics kill spirochetes, but they also kill the good bacteria in your gut, which can cause a yeast infection. To combat this, take probiotics (available at any pharmacy or health food store). Important: make sure you take the probiotics at least two hours before or after you take the antibiotics; if you take them too close together, the antibiotics will kill the probiotics.

Lesson 6: Don’t panic

The information available at our fingertips in this internet age is a double-edged sword. You may read stories that terrify you. Remember, every case of Lyme disease is different. If you catch tick-borne illnesses and treat them immediately, chances are you will not suffer as long those who have been sick for many years. Don’t let my story or those of other chronically ill patients frighten you. Do let these stories offer you hope, however, especially if you have been sick for a long time. I am living proof that even the worst cases of tick-borne illness can eventually be wrestled into remission. I am living proof that long-term treatment works. I am living proof that it’s a long road between being bedridden and skiing, but it can be traveled.

Most importantly, know that you are not alone in this fight. There are many of us battling tick-borne diseases right alongside you. We feel your pain. We validate your suffering. And we know that it can get better. There is hope!

jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock for which she is seeking representation. Contact her at:



  1. Lyme’s been around since the beginning of time:, and  Wisconsin has the first published case from Taylor County in 1969:—lyme-connecticut-that-is.html  This article discusses how dermatologist Dr. Rudolf J. Scrimenti diagnosed the Borrelia infection and described both neurologic and arthritic symptoms exhibited by the patient. He took his knowledge & experience, and attempted to educate Dr. Steere, the person called to the scene of the Lyme, Connecticut “outbreak.”  Excerpt:  Scrimenti even corresponded with Steere and visited Yale to inform him of the long European history and strong possibility that the Lyme clusters were likely a form of Borreliosis. However, Steere, the rheumatologist-to-be had been summoned to investigate outbreaks of juvenile rheumatoid arthritis. After extensive study and consideration, guess what he concluded? He believed that he was observing a previously unrecognized form of JRA.  And, we’ve been paying for it ever since.
  2. Doctor lists constantly change.  The best way for you to find credible doctors is through your local support group. While organizations like Global Lyme Alliance are a place to start, they aren’t aware of changes that can occur quite rapidly.  You can also ask people their experiences with various doctors, keeping in mind that people are going to have differing opinions.
  3. Testing for coinfections is abysmal.  Most LLMD’s will diagnose and treat people clinically, which means, individually based on symptoms.  Seronegativity is common with Lyme/MSIDS which just means you can test negative over and over and over yet be infected.  I’ve found that getting a negative on a test can lead to a false sense of security.  Also, treating this for many people is like peeling an onion.  You start out with certain symptoms and then as you treat, other symptoms can rear their ugly little heads.  For instance, we started treating for Lyme only to discover further down the road Babesia symptoms which needed addressing.
  4. Taking probiotics is a great place to start; however, as Dr. Burrascano states, “Now is the time for pristine health habits.”  Eat a whole-food based diet and avoid junk food, soda, alcohol, and anything that could lower your immune system & cause inflammation: and  Many patients also find they are sensitive to many things and omitting dairy or gluten, for instance, can really help some patients.  Being willing to try things is important as sometimes the only way we learn is by trying.  Support groups are also good for this type of information.  You will find people who are making their own bone broth, kefir/yogurt, kombucha, and have ideas for recipes that are healthy yet don’t taste like cardboard.
  5. Treating this is unlike anything else you’ve ever treated.  Treatment is hard and costly.  You feel far worse for a long time before you start feeling better.  This is one of the hardest things to accept as a patient, but accept it you must.  People are so relieved to finally be diagnosed that starting treatment is like a slap in the face.  They expect to feel better but in fact, they feel worse.  This is due to the herxheimer reaction:  Also, once patients hit a plateau, LLMD’s switch the meds around typically bringing back the dreaded herx.  You go up and down like the waves of the sea.  You have many bad days and a few good.  You have to learn to adjust your life around Lyme/MSIDS.  It will sift you like wheat and you will find in the end you are made of much sterner stuff than you ever realized.  For more:
  6. The silver lining.  After this you never take life for granted (or a day without pain!) and you become much more aware of and sympathetic of others.  All in all, it makes you a better human and God knows, we need more of them!


This website claims the following four Wisconsin offices use mercury-free dentistry:

  1.  Madison No Fear Dentistry 344 S. Yellowstone Drive, Madison WI 53705, (608) 338-0629.
  2.  Integrative Dental SolutionsN35W23770 Capitol Drive, Pewaukee, WI (262) 226-2117 and 6789 North Green Bay Ave, Glendale, WI (414) 234-5712.
  3.  WisconsinSmiles 1469 S. 70th St, West Allis  WI  53214 (414) 383-5833  Couldn’t find anything on website about mercury-free fillings.
  4.  Menomonie Street Dental 1020 Menomonie Street, Eau Claire, WI 54703 (715) 834-8161. Couldn’t find anything on website about mercury-free fillings.
For numbers 3 & 4, above, make sure you call and determine if they are truly mercury-free.

COUNTERPOINT: Hitting the wall of denial with chronic Lyme

Dr. Robert Strang, Nova Scotia’s chief medical officer of health, retweeted a tweet that called into question the existence of chronic Lyme disease. - The Canadian Press
Dr. Robert Strang, Nova Scotia’s chief medical officer of health, retweeted a tweet that called into question the existence of chronic Lyme disease. – The Canadian Press

First, do no harm. This is a maxim of medicine.

Over the past few weeks, I have watched, listened to and read some of the most unprofessional, non-evidence-based, vitriolic, untrue and demeaning garbage about Lyme disease and patients who suffer from it. My friend, fellow patient advocate and author of The Cancer Olympics, Robin McGee, remarked to me on this sorry affair:

“How discouraging for all patient advocates, when those in power cheer on the silencers.”

First there was a retweet by our chief medical officer, Dr. Robert Strang, of a post from the questionable website. Then there were musings by law student Andrea MacGregor, in a Feb. 2 Counterpoint, “ ‘Chronic Lyme’ movement hazardous to health.

In my opinion, these had one purpose, and one purpose only — and that was to stir up anti-Lyme-patient sentiment among the public and health-care professionals. It’s a defence mechanism — because they are wrong, and they have realized that the scientific evidence against their arguments is irrefutable.

Dr. Strang has since released a prepared statement that indicated he cared about misinformation, that he did not realize that his retweet would cause such an outcry, and that he’d be more careful with his future social media posts. But he didn’t care enough to tweet any apology, nor state that if he could, he’d remove his retweet.

As for Ms. MacGregor, she did make a few common-sense points about some marketers and businesses taking advantage of vulnerable and desperately ill patients. Other than that, she presented no evidence whatsoever with regard to the scientifically accepted fact of chronic Lyme disease.

Denial has serious consequences.

In late summer 2018, a coroner’s office in Quebec and a separate Canadian laboratory both confirmed that the body of a young man, who had died by suicide — because, his mother told a Quebec media outlet, he could no longer endure the pain and suffering of his illness — was infected with the Lyme bacterium. He had sought help for Lyme disease for years from many Canadian doctors, only to be told there was nothing wrong, and that it was all in his head. He received no help. Dead. Aged 27!

Chronic Lyme disease, properly called late disseminated Lyme disease, is a well-documented and established medical and scientific fact. This stage of the disease is nothing like early acute localized Lyme disease. Late-stage Lyme disease is a highly dangerous, debilitating and life-changing illness caused by the spirochete bacterium called Borrelia burgdorferi. There is no debate about chronic Lyme disease, at least not in the scientific field. Just denial by a few doctors — the chronic Lyme deniers.

What Dr. Strang and Dr. Todd Hatchette, chief microbiologist for the Nova Scotia Health Authority, fail to tell you is that there are over 700 peer-reviewed and published scientific and medical articles that clearly demonstrate the persistence of infection of Lyme disease, sometimes even after treatment with short courses of antibiotics.

All health-care professionals and the general public should be made aware of the latest non-human primate studies recently published in two esteemed and peer-reviewed science and medical journals, PLOSONE and American Journal of Pathology, written by Embers and colleagues (January 2012 and March 2018, respectively), from Tulane National Primate Research Center, Tulane University Health Sciences. These studies unequivocally demonstrate persistence of the Lyme disease bacterium in body tissues and organs, even after the standard courses of antibiotics.

Rhesus macaque monkeys (which are very close to us genetically) were infected with the Lyme disease bacteria and the disease was allowed to progress to the late disseminated stage (the chronic stage). The monkeys were then treated with the standard 28-day course of doxycycline — the primary antibiotic of choice for Lyme disease treatment. Several months after treatment had ended, the monkeys were euthanized and necropsies carried out.

Lyme disease spirochetes were found in the brains and hearts of these treated monkeys, and in the peripheral nerves of an untreated macaque. Despite negative blood tests, these monkeys were positive by DNA tests, and the spirochete bacteria could be seen with specialized microscopes.

The Embers studies also validate the recent published findings of “persister cells,” after treatment with antibiotics, by Lewis et al, from Northeastern University, and of Zhang and colleagues at Johns Hopkins, Bloomberg School of Public Health.

Lewis demonstrated that some Lyme disease bacteria are “persisters”— they are alive but lie dormant. Since antibiotics only attack actively functioning bacteria, these persisters escape the killing activity of the drugs. Once the antibiotics have been flushed from the system, the bacteria “wake up,” can begin dividing again, and infection is, again, imminent.

The work of Caballo and his team at New York Medical College, the very place from where the IDSA Lyme guidelines originate, also supports the above researchers. In his article, published in Environmental Microbiology in 2017, Caballo described “sleeper cells” of Lyme bacteria capable of changing shape and hiding in the body (a great defence mechanism, by the way) while the patient is taking antibiotics. These bacteria then reappear in their original form when the coast is clear — i.e., when there are no longer antibiotics in the bloodstream — thereby “persisting” after treatment with antibiotics.

All of these recent studies confirm what many other researchers already knew. For example, Dr. Russell Johnson from the University of Minnesota, in collaboration with the U.S. government, stated, back in 1986, when he filed research evidence to the U.S. Patent Office for the Lyme vaccine (U.S. Patent 4,721,617), the following:

“The chronic forms of the disease such as arthritis (joint involvement), acrodermatitis chronica atrophicans (skin involvement), and Bannwart’s (sic) syndrome (neurological involvement) may last for months to years and are associated with the persistence of the spirochete. A case of maternal-fetal transmission of B. burgdorferi resulting in neonatal death has been reported... The infection may be treated at any time with antibiotics such as penicillin, erythromycin, tetracycline, and ceftriaxone. Once infection has occurred, however, the drugs may not purge the host of the spirochete but may only act to control the chronic forms of the disease. Complications such as arthritis and fatigue may continue for several years after diagnosis and treatment.”

What part of all of this conclusive evidence do Drs. Strang, Hatchette and Co. not understand or “believe”? There’s nothing to not believe — it’s not a religion; it’s science! And you either accept it or you don’t. Denial doesn’t make it not exist. And resorting to anti-scientific statements and unprofessional tactics of retweets won’t make the truth or the facts go away. Drs. Strang and Hatchette are wrong. Again.

All of this is reminiscent of what happened with the tainted blood scandal in the 1980s, and many parallels can be drawn with the current CBC mini-series, Unspeakable. Back then, continued denial of the problem of HIV in the blood system by some leaders in the medical establishment and government officials resulted in ruined lives and many deaths.

Make no mistake: harm is being done.

One can see, if one reads the literature, that the truth of — and the evidence for — chronic Lyme disease is scientifically credible, conclusive, undeniable, irrefutable fact. Period.

Jane Bailey lives in Wolfville. She has science and education diplomas and is a member of The Royal Society for Public Health.


For the original story:

For more:

Lyme is ‘All in Your Head’ – A Wake-up Call to Mental Health Professionals

Every day, in doctors’ offices across the US—as well as in Canada, the UK, Ireland, Amsterdam, Australia, Sweden, in 80 countries and on every continent—chronic Lyme disease sufferers are being told that their debilitating, destructive, multi-systemic illness is nothing more than a small nuisance condition that is really just ‘all in their head’.

For more than forty years, mainstream medicine has kept chronic Lyme disease in the shadows. The disease itself, as well as the political machinations of this disease, plunges sufferers down a complicated, confusing, and terrifying abyss—a black hole of personal anguish, conflicting medical views, widespread corruption, and unrelenting health care navigation.

Today, chronic Lyme disease has reached pandemic proportions, with a grossly underreported 300,000 cases in the US alone, and millions suffering worldwide. This is a critical time for mental health professionals to step up for the sake of millions who are chronically ill, infirm and medically abandoned.

As mainstream medicine continues to turn its back, invalidating, denying, ignoring and even mocking the sufferers of this very real chronic illness, the mental health profession has a moral and ethical obligation to create a system of care for those who are sick and dying, who are without medical support and are left to struggle entirely on their own. What we desperately need is a wake-up call to psychiatrists and all mental health care providers, asking you to become educated about this infectious disease and be aware that it must be used as a differential diagnosis.

How have I come to know this Lyme world so intimately?

For more than four years now I have been immersed in the land of chronic Lyme, driven by my adult son’s illness. I am a Registered Psychotherapist in private practice in Toronto, Canada where I support chronic Lyme sufferers firsthand. And I am the author of the newly released book Lyme Madness: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease.

We entered ‘Lymeland’ in October of 2012, when we were forced to go on a long, terrifying and overwhelming medical odyssey starting with a grueling 18-month journey into the offices of 20 medical specialists in NYC, each of whom missed my son’s diagnosis altogether. This hero’s journey required us to navigate my son’s declining health issues entirely on our own. We were forced to do our own research and use our intuition, determine the diagnosis for ourselves, and then traverse the slippery slope of this foreign land—an upside down, inside out, mad world where most doctors are not there to support you save for a handful of ‘believers’. On this expedition, just like all Lyme sufferers and caregivers, we were forced to become our own microbiologist, neurologist, immunologist, gastroenterologist, infectious disease specialist and so on, in order to map out a treatment plan, all without a GPS.

Our story is by no means unique. Most chronic Lyme sufferers are ill for months, years or even decades before they come to understand the root cause of their dis-ease. Most sufferers consult with a multitude of doctors only to have to figure it out for themselves.

So this has now become part two of my mission: to educate my colleagues about the devastating neuropsychiatric, bio/psycho/social, and physical effects of this illness.

When patients present with intractable depression, intractable anxiety, and a myriad of other symptoms, mental health professionals must consider that infectious disease can potentially be a root cause. It’s not enough to only consider childhood trauma when assessing mental health. And it’s no longer acceptable or appropriate to make a bee line to the prescription pad as the first line of defense. First, the potential underlying mechanisms of neurological inflammation, immunosuppression, and infectious disease need to be more widely considered.

Chronic Lyme disease is a neurological, bacteria driven, multisystem, immunosuppressive, post sepsis illness. And it’s a disease that for more than forty years has been kept in the shadows by mainstream medicine, forcing sufferers to go it alone and navigate this life-altering illness without adequate support. Many are losing their health, their livelihoods, their relationships, their homes, and their dignity.

Yes, it’s true. Chronic Lyme disease is, in fact, in your head. But not in the way that doctors intend that to mean. Contrary to medical consensus, chronic Lyme disease is not a made-up illness. It is NOT a case of malingering, Munchausen, hypochondria, laziness, or “craziness.”

Chronic Lyme disease is all in your head because it is primarily a neurological disease, wreaking havoc on your brain and your nervous system—as well as your heart, your liver, your kidneys, and so many other organs. Lyme disease patients can, and most often do, experience anxiety, depression, panic attacks, rage, attention problems, short-term memory loss, personality changes, mood swings, and learning disabilities.

Chronic Lyme sufferers can also experience detachment, dissociation, depersonalization, psychotic episodes, and obsessive-compulsive disorder. As with any cognitive impairment, chronic Lyme sufferers may have trouble keeping track of their daily tasks, they may lose things easily, including words and objects, they may have trouble retrieving information, forget appointments, and struggle with holding a conversation.

Sufferers are desperate for mental health professionals (along with all other medical specialists) to understand Lyme so that they will know to consider it as a potential differential diagnosis before plying a patient with psychotropic meds that may make matters worse. There have been so many Lyme sufferers misdiagnosed as bipolar or schizophrenic and then institutionalized when, in actual fact, the patient who has been committed to a psych ward is suffering from Lyme encephalitis.

Suicidal ideation and completed suicides are not uncommon among Lyme sufferers. I understand why this is the case, having personally witnessed the intolerable suffering of those who have wanted to end their lives. I have also read plenty of stories about those who have taken their own lives as a result of Lyme—stories that are heartbreaking and tragic, and perhaps could have been prevented.

There are a number of reasons why people commit suicide. And chronic Lyme is the perfect storm. It’s a disease that matches up with so many reasons for not being able to see a way out of the darkness. It is clear to me how and why chronic Lyme sufferers, in particular, so often succumb to this disease by their own hand.

Anxiety and depression are commonly experienced neurological symptoms of Lyme. After all, with Lyme, the brain is inflamed and therefore subject to all sorts of neurological imbalances. This, compounded by the lack of (and often outright negation of) medical attention, can lead to discouragement, fear, helplessness, frustration, loss, grief, loneliness, and, at times, little hope for recovery. When an illness is chronic and there is unrelenting suffering and inadequate relief from the myriad of debilitating symptoms, anxiety and depression can become even more pronounced.

Lyme depression is often intractable—that is, resistant to treatment. Lyme can also affect the endocrine system, potentially creating mood disorders. The collection of symptoms—including brain fog, headaches, fevers, joint pain, nerve pain, shakiness, instability, dizziness, vision and auditory disturbances, hallucinations, seizures, paralysis, and more—experienced day in and day out, can wear you down, making even the most resilient warriors eventually want out.

Lyme sufferers are socially isolated, medically denied, crying out for help, and no one is listening. Family and friends don’t know how to help. Some loved ones all but abandon the Lyme sufferer because they get fed up with the constant complaining and limitations. As doctors are showing Lyme sufferers the door, it becomes more and more difficult for loved ones to understand and support those with Lyme. Lyme sufferers feel like a burden. They can lose their independence, their livelihoods, and their ability to function. They feel like they’re losing their minds at times. They live with constant brain fog and cognitive limitations, making every task far more difficult. They get worn down by the chronic pain and illness, by the fear, the inactivity, and the inability to plan or have anything to look forward to.

Lyme sufferers have to face loss every day. Loss of health, loss of the person they once were, loss of independence, loss of dreams and goals, loss of missed opportunities, loss of the life they once had, loss of an identity, loss of self-esteem, loss of loved ones who abandon them, loss of hope, loss of finances, loss of employment, and loss of a future. Lyme sufferers are victimized many times over—by the disease itself, by doctors who turn their backs, by family and friends who roll their eyes and walk away, by insurers who refuse coverage, and by a medical system that negates the very existence of this disease.

I would give anything to un-learn, un-know and un-see the ugly and devious underbelly of mainstream medicine and all of its political machinations. And I would of course give anything to see my son fully recover from this life-altering illness. We continue to work at it every single day.

Please know that chronic Lyme disease is about so much more than ticks and bulls-eye rashes—which only 20% of sufferers ever get to see as proof positive of their disease. Chronic Lyme is the new B-cell AIDS. And if that’s not madness enough, it is also known as “the New Great Imitator,” mimicking more than 350 medical conditions including chronic fatigue syndrome, fibromyalgia, Alzheimer’s, Parkinson’s, Rheumatoid Arthritis, Multiple Sclerosis and more. If only chronic Lyme disease were just about ticks and rashes. Those were simpler times when we thought this was the case.

If all that I’ve shared about this disease is overwhelming, confusing or frightening, you will understand why I’ve called my book LYME MADNESS. There is no other way to describe this journey that we’ve been forced to take. And as a therapist, an empath, and now a Lyme advocate, I know that it’s my calling to tell this cautionary tale—to be one of many voices out there working to wake up the world to what is happening.

Make no mistake: healing from chronic Lyme is a complex, multilayered, do-it-yourself guessing game, with a daily and sometimes hourly hyperfocus on what is causing the symptoms and how best to address them. And while my son has some very good non-mainstream doctors on board to help him heal, the constant shifts in his health require us to continue to be our own sleuths, researchers, doctors, and diagnosticians at all times.

Several years later, we are still searching and filing away new ideas as my son’s various symptoms wax and wane. Without question, this process is expensive and draining, as it requires throwing all kinds of stuff against the wall to see what may or may not stick. If the medical system would just do its job, the job that it’s supposed to do by training and by the very meaning of the Hippocratic oath, then perhaps this journey could be a little less do-it-yourself with a lot more certainty.

My hope is that the blaming and the discrediting of millions of patients worldwide ends now and that mainstream medicine starts to do its job and stops sick-shaming the sufferer with the statement that “it’s all in your head.”

As Dr. Kenneth B. Liegner, a US Lyme-Literate MD, one shining light in a small community of doctors who support and treat Lyme sufferers, says:

“In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government, and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration.”

He has also generously reminded me,

“If it were not for mothers, we would be nowhere with Lyme disease. It is MOTHERS, concerned about their families, their children, that have sparked ALL progress in this field!”

That’s because mothers know that when our kids are suffering—even our adult kids—we must trust that it is not necessarily all in their head. Mental health professionals must trust this too.
Lori Dennis, MA, RP is a Registered Psychotherapist in Private Practice in Toronto, Canada and author of the newly released book LYME MADNESS: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease.


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