Archive for the ‘Psychological Aspects’ Category

Lyme Disease & Depression

“Maybe you’re just depressed.”

It’s a line many Lyme patients have heard from family, friends, co-workers, and even physicians. Particularly for those struggling with undiagnosed Lyme disease, this suggestion is a popular “answer” when patients don’t otherwise fit into an easy diagnostic box. When I was first wrestling with symptoms of tick-borne illness at age 19, a nurse at my college health center said, “Maybe you should see someone in counseling about all of this” when she tired of my frequent visits for hypoglycemia, fatigue, headaches and fevers. At such an impressionable age, I worried she was right.

In some ways, she was. Seeing a counselor might have helped me work through the complex emotions of being sick, not having a diagnosis, and not being able to keep up with my peers academically or socially. Later, when I was being properly treated for Lyme disease, babesiosis, ehrlichiosis, possible bartonella, and chronic active Epstein-Barr virus, a therapist was an important part of my support system.

But seeing a therapist wouldn’t have solved my physical ailments, because depression was an effect of them, not the cause. Anyone who suffers from a long-term illness, who wakes up day after day feeling like they never slept, who can’t get out of bed, is bound to get depressed. For some people, chemical depression is indeed the diagnosis that causes both mental and physiological symptoms. For Lyme disease patients, however, depression is a symptom of that tick-borne infection.

A recent study by Dr. Michael Eriksen of Copenhagen University and Dr. Brian Fallon of Columbia University showed an increased risk of psychiatric illness in Lyme disease patients. Collecting data from over 7 million Danish people over 22 years—including 12,000 people diagnosed with Lyme disease—the researchers found that with a single diagnosis of Lyme disease, there is a 24% increased risk of any mental disorder, including depression. Two or more episodes of Lyme disease increases that risk to 79%. This elevated potential for mental disorders was highest in subjects ages 20-29. Having struggled with depression throughout college and my early twenties, both as a side effect of being sick and as a side effect of Lyme disease itself, I can certainly attest to the particular vulnerability of young people.

Whatever a Lyme disease’s patient’s external situation, the mechanisms of the disease going on in their body can cause depression. This is especially true with neurological Lyme disease, when the Lyme bacteria (spirochetes) have crossed the blood-brain barrier, causing inflammation in the central nervous system. This inflammation can lead to a host of psychiatric manifestations. As psychiatrist Robert Bransfield, M.D. notes in his paper “Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist’s Clinical Practice,” “Lyme Borreliosis causes immune and metabolic effects that result in a gradually developing spectrum of neuropsychiatric symptoms, usually presenting with significant comorbidity which may include developmental disorders, autism spectrum disorders, schizoaffective disorders, bipolar disorder, depression, anxiety disorders (panic disorder, social anxiety disorder, generalized anxiety disorder, posttraumatic stress disorder, intrusive symptoms), eating disorders, decreased libido, sleep disorders, addiction, opioid addiction, cognitive impairments, dementia, seizure disorders, suicide, violence, anhedonia, depersonalization, dissociative episodes, derealization and other impairments.”[i]

If this list seems scary, don’t despair. While Lyme disease, especially when complicated by co-infections, can have devastating effects, those effects can also improve significantly with proper treatment. Antibiotics and complementary therapies helped me battle my tick-borne illnesses into remission. While I do still struggle at times with anxiety and depression, they are much better than they were when I was first sick. Talk therapy, medication, and cognitive behavioral therapy have all helped. So has understanding the derivation of my anxiety and depression, and recognizing that when they do flare up, it generally means that Lyme disease symptoms are flaring, too. For example, I have noticed that when I get over tired, I get very sad. Nothing external triggers this sadness; it’s brought on by inflammation and fatigue. Rest—and occasionally small tweaks to my protocol—help me get back on track.

If you have depression as part of tick-borne illness, please know that this is normal, and that there is help. Speak with your Lyme Literate Medical Doctor (LLMD) about psychiatric treatment and/or talk therapy, and know that things can get better. I am living proof.

[i] Bransfield RC. Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist’s Clinical Practice. Healthcare. 2018; 6(3):104.


Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on has received mention in publications such as The New Yorker,, CQ Researcher, and Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.




Great read and very true.  Depression for me went in tandem with how I felt physically.  The worse I felt physically the worse I felt mentally.  They tend to go hand in hand.

Some; however, struggle more than others and require psychiatric help.  Just make sure you get a psychiatrist who you have vetted and is at least “Lyme friendly, if not “Lyme literate,” as I’ve heard stories of abuse from these professionals who are uneducated and misinformed as to what Lyme/MSIDS can do to your emotions and cognitive/psych issues.

One thing is for sure: proper, appropriate antimicrobial treatment will help alleviate or take away these symptoms all together.

For more:

Revisiting an Anthropologist’s View of Lyme-Related Suicide

TOUCHED BY LYME: Revisiting an anthropologist’s view of Lyme-related suicide

I first came across Aaron Jackson in 2018, when he submitted a guest blog for our website. It was titled An anthropologist’s view of Lyme disease and suicide.

Aaron was the anthropologist in question. As a Lyme-infected person who had tried to take his own life, he was uniquely qualified to discuss this topic.

His article clearly hit a responsive chord with our readers. It became one of our website’s most-accessed blogs that year.

I recently heard from Aaron again. He lives and works in Australia now. His research focuses on fatherhood, caregiving, and disability.

He has written a book called “Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities,” recently published by University of California Press.

Aaron was propelled into the world of caregiving after the birth of his severely disabled son, Takoda. The book uses his personal experience caring for Takoda as a springboard for larger discussions about fatherhood, caregiving and our cultural ideas of masculinity.

He also includes some of his personal experience with Lyme disease. The following excerpt of his book talks about how Lyme thrust him into the depths of despair, and what ultimately came of it.

Worlds of Care

My ordinary patterns of everyday life deteriorated. The world around me no longer hummed with vibrancy or possibility. I couldn’t climb a short flight of stairs without almost collapsing, forget about kickboxing. I no longer had the stamina to play with my children or take care of them the way I was used to doing.

The roles and responsibilities that shored up my identity as a father and caregiver were lost to me. I became dependent on my spouse for care.

So, on a quiet morning at the end of summer, I tried to take my life


A poignant epilogue to the book tells us that young Takoda died unexpectedly in his sleep in 2019. He was 8 years old.  (See link for article)

Click here for more information about the book. You can follow Aaron Jackson on Twitter @Kodacruz.

TOUCHED BY LYME is written by Dorothy Kupcha Leland,’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at .


For more:

What’s Behind This Epidemic of Chronic, Inflammatory Conditions?

What’s behind this epidemic of chronic, inflammatory conditions?

by Daniel A. Kinderlehrer MD

I have witnessed many changes in the over 40 years I’ve been a doctor, including epidemic rises in multiple medical conditions.

I’m not talking about the present pandemic, nor am I referring to the opioid crisis, another devastating epidemic that has taken the lives of over 500,000 Americans. I’m talking about chronic conditions that cause a slow burn and sometimes kill.

Lyme disease is but one example.

But think how things have changed since the beginning of the previous century: heart disease was barely on the radar in 1900, but for over 50 years it has been the number one cause of death in the U.S.1

A whopping 69% of Americans are now overweight, with 36.5% obese,2 directly contributing to the skyrocketing incidence of adult-onset diabetes mellitus.3 When I was in training in the 1970s, I never saw a patient with AODM who was under 40 years old. Now, it is being diagnosed in children.

And then there are the dramatic increases in autism spectrum disorder,4 attention deficit hyperactivity disorder (ADHD),5 autoimmune conditions,6 some types of cancer7 and food allergies.8

Food sensitivities, mental health

Twenty-five years ago, when I had a large environmental medicine practice, most of my patients with food sensitivities reacted to one or more of a half dozen foods: milk, corn, eggs, wheat, citrus, or sugar/yeast. It was easy to put patients on an elimination diet: fish, lamb, vegetables, legumes, potatoes and rice. Now people react to avocados, rice, and anything under the sun.

And, of course, there’s the rise in mental health disorders. Even before the Covid pandemic, the World Health Organization predicted that depression would become the leading cause of death globally.9

According to the CDC, in 2019, 19% of Americans suffered from depression and 7% were moderately to severely affected.10 Among adults, suicidal ideation is increasing. Suicide has become the second leading cause of death in children and adolescents ages 13 to 19—and the leading cause of death among 13 year-olds.11 (Among all Americans, it is the tenth leading cause of death.11)

The role of epigenetics

There are a host of factors that determine the how, where and why illness occurs. These include genetic proclivity, lifestyle, trauma, diet, exposures to microbes and toxins. But here is what is further catapulting these seemingly disparate epidemics: a change in the human condition that we now understand as epigenetics.

While it takes millennia of natural selection to change our genes, specific proteins that turn genes on and off can alter gene expression in a single generation. Epigenetics explains how a change in expression of genes can be passed from one generation to the next without actually changing the DNA. There are literally thousands of conditions that can cause epigenetic changes.

Nutrient deficiencies, for example exacerbated by soil depletion, can activate epigenetic changes that result in neurological issues from mood and behavioral disorders to cognitive dysfunction, and these problems are passed on to subsequent generations.12,13 Epigenetics helps explain why the skyrocketing sugar intake in our diets is causing obesity.14,15

Chemical exposures also have epigenetic consequences. Over the past century, we have been exposed to hundreds of thousands of chemicals that are new to human existence. Pesticides, insecticides, herbicides, and other chemicals all have the potential to modify epigenetic activity.16 Countless agents now ubiquitous in daily life, from air pollution to air fresheners and fabric softeners can negatively impact overall health.17,18

Societal changes

But it is not only diet, nutrition, and exposure to toxic chemicals that have changed in the past century. Another factor which has undergone radical transformation is the social milieu. The social sphere, which used to revolve around communities, has devolved to extended families, then to nuclear families, then single-parent families, and now, tragically at times, to homeless families or solitude.

It is no longer routine for people to go next door to be held by grandma, or move in with aunts and uncles when the going at home gets rough. In essence, safe shelter has disappeared. This lack of safety is compounded for survivors of childhood trauma, who often develop epigenetic abnormalities and thus pass the trauma on to their offspring.19

Intergenerational trauma

That’s right—PTSD can be inherited. A review paper by Rachel Yehuda and Amy Lehrner on intergenerational transmission of trauma and the role of epigenetic mechanisms states:

“There is now converging evidence supporting the idea that offspring are affected by parental trauma exposures occurring before their birth, and possibly even prior to their conception. On the simplest level, the concept of intergenerational trauma acknowledges that exposure to extremely adverse events impacts individuals to such a great extent that their offspring find themselves grappling with their parents’ post‐traumatic state.”20

PTSD is not only a psychological disorder, it triggers increasing dysregulation of an individual’s neurobiology.21

Other social factors also have an enormous impact on health and well-being. Social isolation is a major risk factor for depression.22 The chronic stresses of poverty, racism, homophobia, and misogyny not only make for a bad day, they act on our biochemical pathways impacting immune, hormonal, and neurological function.23

The long-term release of the stress hormone cortisol and of proteins called cytokines (which regulate the body’s immune system response) can cause even more damage. These biochemical messengers, in turn, can result in epigenetic changes that are passed on to future generations.24

We’re not born with a clean slate

Epigenetic transmission means that both physical and emotional traumas are cumulative over generations. Newborns are not born with a clean slate. And these alterations in epigenetics are manifesting in a tsunami that is destabilizing individuals’ core regulatory systems.

Increasingly, people respond as if they have continuous PTSD—their nervous and immune systems going haywire at both real and imagined threats, with all the downstream consequences evident in an increasingly sick population.

Which brings us back to PANS, which I have discussed in the past few articles.

I think we are witnessing an epidemic of autoimmune reactivity to multiple agents in the environment—like foods, viruses, bacteria, and mold. We are clearly seeing it with SARS-CoV-2 (COVID-19). When autoimmune reactivity results in neuroinflammation, it can result in cognitive dysfunction, PANS and a panoply of mental health disorders—for generations to come.

We need to become more cognizant of the cumulative stresses that result in combined mental and physical issues, and address them at their core.

Dr. Daniel Kinderlehrer is an internal medicine physician in Denver, Colorado, with a practice devoted to treating patients with tick-borne illness. He is the author of  Recovery From Lyme Disease: The Integrative Medicine Guide to the Diagnosis and Treatment of Tick-Borne Illness.


  9. Tucci V, Moukaddam N. We are the hollow men: The worldwide epidemic of mental illness, psychiatric and behavioral emergencies, and its impact on patients and providers. J Emerg Trauma Shock. 2017;10(1):4-6. doi:10.4103/0974-2700.199517
  12. Liu J, Zhao SR, Reyes T. Neurological and Epigenetic Implications of Nutritional Deficiencies on Psychopathology: Conceptualization and Review of Evidence. Qi L, ed. Int J Mol Sci. 2015;16(8):18129-18148.
  15. Ling C, Rönn T. Epigenetics in Human Obesity and Type 2 Diabetes. Cell Metab. 2019;29(5):1028-1044.
  16. Collotta M1, Bertazzi PABollati V. Epigenetics and pesticides. Toxicology. 2013 May 10;307:35-41.
  19. Matosin N, Cruceanu C, Binder EB. Preclinical and Clinical Evidence of DNA Methylation Changes in Response to Trauma and Chronic Stress. Chronic stress (Thousand Oaks). 2017;1:10.
  20. Yehuda R, Lehrner A. Intergenerational transmission of trauma effects: putative role of epigenetic mechanisms. World Psychiatry. 2018;17(3):243-257.
  21. McFarlane AC. The long-term costs of traumatic stress: intertwined physical and psychological consequences. World Psychiatry. 2010;9(1):3-10.
  22. Bhatti AB, Haq A ul. The Pathophysiology of Perceived Social Isolation: Effects on Health and Mortality. Muacevic A, Adler JR, eds. Cureus. 2017;9(1):e994.
  23. Song H et. al. Association of Stress-Related Disorders With Subsequent Autoimmune Disease. 2018;319(23):2388-2400.
  24. Notterman DA, Mitchell C. Epigenetics and Understanding the Impact of Social Determinants of Health. Pediatr Clinics North Am. 2015;62(5):1227-1240.



I’ve got news for you: vaccines are also stressors.  They can reactivate latent infections including but not limited to Lyme/MSIDS.  They can also be contaminated with retroviruses, viruses, cancer, parasites, metals, graphene oxide, polyethylene glycol (PEG) and ethylene alcohol, and other harmful nanoparticles.  And all gene-based vaccines such as the COVID jabs can be expected to cause blood clotting and bleeding disorders based on their molecular mechanisms of action. Further, the spike protein is a dangerous toxin causing untold damage.

Vaccines have been and are a source of destruction that is being put directly into bodies of millions worldwide. It is the “golden calf” no one wants to talk about, or is censored and bullied if they do, but is THE elephant in the room.

“Messages on the Mirror”: Family Endurance & a Lyme Love Story

“Messages on the Mirror”: Family endurance and a Lyme love story

By Donna Z. Falcone

If you have lived with chronic Lyme disease, you may be familiar with this phenomenon.

Significant life events—the ones most people never forget—can suddenly disappear, like water down the drain, only to bubble up again around the bend.

Take, for example, the brown shipping box that sits on the floor of my art room. Every so often, I notice the brown box and wonder what’s inside.

Since I don’t feel like crouching all the way down to the ground for a look inside, I just stare at it until the memory returns.

Oh . . . that’s right, I tell myself. I wrote a memoir… Messages on the Mirror: Lovenotes and Lyme. Those are extra copies. I leave it there, unopened.

How could someone forget that, right? I mean, writing a whole book, even if it’s not on the best seller list, is a victory! I even give myself extra kudos for having done it under the duress of chronic Lyme disease. The irony is not lost on me that someone with a memory like mine would set out to write a memoir in the first place.

Years of gathering bits and pieces of my life in journals, computer files, calendars, and the backs of pharmacy receipts and old envelopes or whatever else was handy at the time—and managing to not lose them!—was an accomplishment. Spending eight years organizing it all, hammering down timelines, then writing and rewriting to transform a scattered heap of notes into a memoir, seems too big a deal to forget about.

My family’s story

When I pass by that box, and do (eventually) recall what it holds, I’m reminded that this is the story of my Lyme journey. This is my family’s story! And, I am reminded of the many reasons I wrote it.

I wanted to tell my story for the patients going through the surreal journey of diagnosis and treatment of Lyme and all that goes with it. For them, I hope my book can serve as evidence that they are not imagining things. To tell the truth, it surprised me a little that I also needed evidence. I needed something to hold in my hands that says, Yes Donna, that really happened. See . . . It’s all right here.

It also felt important to tell people who love someone with Lyme—I see you and know it’s hard for you, too. Lyme disease impacts everyone: parents, spouses, children, friends, family, co-workers. Diagnostic tests can be unreliable and well-informed doctors are hard to find. We don’t always know how long treatment will last or how much it will cost to get better.

I know you want nothing more than to have us back, whole, so that we can move forward together. We want what you want, and things can get very emotional. We try to stay positive, but we often struggle. We fight, even.

Isolation is hard. Intimacy is hard. We can feel disoriented, frightened, demoralized, and hopeless, and we are always wishing this thing called Lyme disease was just a bad dream. But it’s real, and its impact is far-reaching, and sometimes it can even teach us that we are never not whole, and we can always move forward from where we are, now. We don’t have to wait to move forward.

Making it to the other side

I want to share what my family and I went through, what it was like when my kids and husband bore the brunt of all the housework, shopping, and cooking—and how we came out on the other side.

In the end, I think my favorite thing about my book, is this: It’s not only a Lyme story, but a love story. And who doesn’t love a good love story now and then?

For my fellow Lyme disease patients, do you struggle with reading print (like I did)? I have tried to make this book more accessible to you. It’s printed it in a larger font with wider than expected spaces on the page. The chapters are very short, in case you have a hard time focusing (or staying awake, for that matter) while reading. The titles are very descriptive, in hopes they’ll provide distinct clues for finding your way back to your place should the bookmark fall out and get lost.

If you have walked the Lyme journey, I hope you can see yourself in my story. If you love or care for someone with chronic Lyme, I hope it’s helpful to see another family traveling a similar, often messy, road. Messages on the Mirror is my story—but parts of it may be yours, too.

Donna Z. Falcone is a writer, poet, and artist.

Learn more about Donna and her book on her website.

Messages On the Mirror can be ordered in paperback and e-book formats on, an independent book platform.



I’m thankful that patients that “reach the other side” of health are taking the time to write.

Years ago, when I was desperate and at my worst, I contacted a recovered patient online that had a website. I just needed to hear that there was hope.  Not knowing me from Adam, he replied immediately.  I have found this to be the case with most patients.  They “get it.”  They understand the looming fear, isolation, doubting your own sanity, and concern over what the future holds, and they all want to be of help.  If there’s one thing this monster can do, it can give you compassion for others.

The piece of advice I never forgot was, “Don’t be depressed about feeling depressed.”

He said you need to give yourself permission to feel lousy and depressed.

Man, did that help me.

The other thing that helped came from my mom – who struggled with the ability to sleep.  She wasn’t a Lyme/MSIDS patient – just an elderly woman, like so many others, who struggled with sleep.  She also told me to give myself permission that sleep just isn’t happening, but to use it to be productive.

During these sleepless hours, usually between 3-5am, I read countless books and articles on tick-borne illness and other health topics.  I covered a lot of ground in those wee hours of the morning.  Looking back, those well spent hours gave me the foundation I need today to deeply understand topics to help others on the journey.

We all have a place on planet earth, and we are all needed.  Chin up and don’t quit.  Your better days are coming.  For now, give yourself permission to feel like crap, be unable to sleep, to hurt virtually everywhere, to forget simple words like “where,” and all the other lovely things happening to your poor body and mind.  There are many silver linings – you just can’t see them clearly right now, but you will.

Go here for my story.

Let the Gaslighting & Stigmatization Stop Here

TOUCHED BY LYME: Let the gaslighting and stigmatization stop here

The third panel of the federal Tick-Borne Disease Working Group held its first meeting today–online. I was one of 10 people selected to deliver verbal comments. There was a three-minute time limit. Here’s what I said:

A topic not addressed by the first two Working Group panels is the severe impact Lyme disease can have on mental health.

A study recently published in the American Journal of Psychiatry shows that people with Lyme disease have a 75% higher risk of dying by suicide than those without it.

Lyme patients also have a high rate of other psychiatric conditions, such as depression.

Lead author Dr. Brian Fallon, of Columbia University, points out that Lyme is not a simple illness. He states: “In addition to the risk of severe cardiac, rheumatologic, and neurologic problems, Lyme disease can cause severe mental health problems as well.”

MyLymeData bears this out

Furthermore, results from the MyLymeData patient registry tell us that

  • 29% of Lyme patients surveyed say they have had severe psychiatric symptoms
  • 30% report that they take antidepressants—compared to 13% of the general population
  • 32% say they are too disabled to work. This situation leads many to despair.

When patients seek help from their physicians for debilitating symptoms, far too often, their doctors dismiss their concerns out of hand.

Doctors essentially say, “I don’t believe you. Your symptoms aren’t real.”

Some call this gaslighting. It undermines the patient’s self-confidence, and makes them doubt their own experiences.

Without treatment options, suffering people are left adrift in a sea of hopelessness.

Stigma of Lyme disease

Patients say the stigma surrounding Lyme disease profoundly affects them.

74 percent say they have been treated disrespectfully by a healthcare provider.

67 percent say they have postponed or avoided medical treatment due to discrimination, disrespect or difficulty obtaining care.

US News and World Report recently asked Lorraine Johnson, the head of, to comment on Dr. Fallon’s study of Lyme disease and suicide.

She said in part:

“We know that there’s a psychiatric component to what is going on, but I think [a major driver of] the increased suicide rates among patients with Lyme disease is that they are disbelieved, they are stigmatized, and they are gaslighted by physicians, by insurers, often by society and, sometimes, unfortunately, by their families.”

I urge this panel to listen to patients. Let the gaslighting and stigmatization stop here. Together, let’s work to change the system that deprives people with Lyme disease of the medical care they need to get well. Thank you.

TOUCHED BY LYME is written by Dorothy Kupcha Leland,’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at