Lyme Disease: How a Bacteria Plays Havoc with Immune Systems

By Dr. Jenny Wachter, University of Saskatchewan

Lyme disease is the leading vector-borne disease — meaning diseases that are transmitted to humans from another organism like a tick or mosquito — in North America and Europe.

New human cases are estimated at over 400,000 in the United States each year. Canada has experienced a drastic increase in human cases, from 266 cases in 2011 to 3,147 in 2021, as the habitat of its vector, a tick, expands north.

The initial symptoms of human Lyme disease can be vague, such as fever, headache, fatigue and often rash. It is a potentially serious condition that can affect multiple systems in the body — including the heart, nervous system and joints — and can become a chronic illness.

Lyme disease is caused by a unique, spiral-shaped (spirochete) bacterium called Borrelia burgdorferi. B. burgdorferi cannot survive in the environment on its own. For survival and transmission, it requires susceptible hosts (usually small mammals or birds) and a specific vector: the black-legged tick, also called the deer tick.

Evading the Immune System

B. burgdorferi must survive extremely diverse conditions over the course of its transmission and infection cycle: from host to tick vector, and then into new hosts.

This bacterium senses and responds to its surroundings, most notably by modifying its appearance by changing the proteins on its outer surface to help it survive in either the tick or the host.

When a tick infected by B. burgdorferi bites and feeds on a vertebrate host, it provides a signal for the bacteria to switch its proteins to those required to infect the host, and to begin migrating through the tick and into the bite site. This process takes between 36 and 72 hours.

However, many of these proteins are recognized by the host as foreign, and the host’s immune system works to try to clear the infection. This includes a strong, antibody response targeted against B. burgdorferi.

Despite these immune responses, B. burgdorferi is able to cause long-term infections. In natural host reservoirs — the animals that the bacterium usually finds itself in via tick bites, such as small rodents — these infections do not cause diseases like those seen in humans and other non-natural reservoirs.

In fact, the bacteria itself does not produce any products that would be toxic to its hosts, either natural or non-natural. Yet chronic infection in humans can lead to Lyme neuroborreliosis, carditis and Lyme arthritis.

How then, are these bacteria able to cause such a devastating disease in humans and other animals, but not in their natural host reservoirs?

While there is still much to learn about B. burgdorferi, we know of several factors that play a role in the range of disease it causes. These include:

• its genetic make-up,

• its ability to access various tissues (such as the joints, heart and nervous system) due to its ability to move around (motility), and

• the immune response of the host.

Apart from motility, B. burgdorferi also protects itself from the strong B. burgdorferi-specific targeted antibody response of its host’s immune system by changing the appearance of the main outer surface protein expressed during persistent infection in a process called antigenic variation.

In addition to antigenic variation, B. burgdorferi bacteria can also change their DNA by exchanging genetic information, a process also known as gene transfer. This process allows these bacteria to further alter their appearance during infection to avoid the host immune system.

This process works so well that these B. burgdorferi bacteria appear different enough to allow re-infection or even co-infection (where multiple strains of B. burgdorferi infect a single host at the same time) of a vertebrate host, like a mouse or a human, despite the presence of specific antibodies to fight the bacterium.

In fact, in nature, the majority of host reservoirs and the ticks that carry the bacterium are infected with multiple strains of B. burgdorferi. The ability of B. burgdorferi to reinfect and co-infect both ticks and hosts increases the spread of the bacteria in the environment as well as the chances that humans will encounter Lyme disease.

Human Cases of Lyme Disease Are Increasing

As a vector-borne pathogen, B. burgdorferi only infects individuals that are bitten by an infected tick. It is not transmitted from person to person.

Environments that support black-legged/deer ticks are at risk of harbouring B. burgdorferi. In North America, these species of ticks are widely distributed throughout the eastern and midwestern United States. Recent geographic expansion to the north is increasing the prevalence of Lyme disease in Canada.

The increase of human Lyme disease cases highlights the failure of existing preventive strategies — such as minimizing exposure to tick habitats, performing diligent tick checks, and wearing suitable clothing when performing activities in known tick habitats — and emphasizes the need for an effective human vaccine.

At Vaccine and Infectious Disease Organization at the University of Saskatchewan, we are taking a One Health approach by recognizing that human health is closely related to the health of animals and the shared environment. We are investigating the role of B. burgdorferi, ticks, and susceptible animals on the spread and survival of the Lyme disease bacterium.

It is important to mimic the natural infectious cycle as much as possible when identifying potential vaccine and drug targets. This is because the way host animals are infected (for example, artificial needle infection or natural tick bite) can produce drastic differences in the resulting infection.

Additionally, despite the prevalence of this disease, there are still many aspects of the infectious cycle that remain unknown due to the uniqueness of B. burgdorferi and a lack of knowledge about the tick vector.

For example, we recently learned that a B. burgdorferi protein is responsible for regulating the components necessary for the bacterium to infect vertebrates, including humans. The absence of this protein, among other things, leads to the death of B. burgdorferi in ticks, making it an exciting target for research investigation.

By learning more about the molecular mechanisms that change or reduce the severity of the disease caused by this bacterium, we can identify new targets for the prevention of human Lyme disease. 

Jenny Wachter, PhD, is a research scientist and adjunct professor at University of Saskatchewan.

This article originally appeared in The Conversation and is republished with permission.

Brain Changes Found in Patients with Long-Term Lyme Disease

By Pat Anson, PNN Editor

Researchers at Johns Hopkins University have documented changes in the brains of patients with post-treatment Lyme disease that may explain symptoms such as brain fog, memory loss and other cognitive issues. The finding could also have implications for patients with long covid, fibromyalgia, multiple sclerosis, chronic fatigue and other health conditions who have cognitive problems.    

Lyme disease is a bacterial illness spread by ticks that causes a rash, flu-like aches and fever, joint pain and fatigue. Most patients fully recover when treated early with antibiotics, but up to 20% of those with post-treatment Lyme disease (PTLD) have long-term symptoms, including depression, insomnia and cognitive difficulties. There is usually no clinical or laboratory evidence to explain their ongoing issues.

“Objective biologic measures of post-treatment Lyme symptoms typically can’t be identified using regular MRIs, CT scans, or blood tests,” says John Aucott, MD., director of the Johns Hopkins Lyme Disease Clinical Research Center.

Aucott and his colleagues recruited 12 PTLD patients and 18 people without a history of Lyme to undergo functional MRI (fMRI) scans while performing a short-term memory task. The scans allow investigators to track blood flow and other changes in the brain in real time.

Their findings, published in the journal PLOS ONE, suggest that cognitive difficulties in PTLD patients are linked to functional and structural changes in the “white matter” of the brain, which is crucial for processing and relaying information. The imaging tests revealed unusual activity in the frontal lobe, an area of the brain responsible for memory recall and concentration. Patients with post-treatment Lyme needed longer periods of time to complete the memory task.

“We saw certain areas in the frontal lobe under-activating and others that were over-activating, which was somewhat expected,” said lead author Cherie Marvel, PhD, an associate professor of neurology at Johns Hopkins.

“However, we didn’t see this same white matter activity in the group without post-treatment Lyme.”

To confirm their finding, researchers used another form of imaging called diffusion tensor imaging (DTI) on all 12 patients with Lyme and 12 of the non-Lyme participants. DTI detects the direction of water movement within brain tissue. Water was diffusing, or leaking, in the the same white matter regions identified in the fMRI.

Researchers believe the increased activity they saw in white matter may reflect an immune system response in the PTLD patients, which may also explain cognitive issues in patients with other chronic health conditions.

PLOS ONE

“Results reported here may have implications for other diseases in which white matter pathology has been demonstrated (e.g., multiple sclerosis) or in illnesses in which cognitive complaints follow disease onset,” researchers said. “The use of multimodal neuroimaging methods, like the ones used in the current study, may be a viable approach for obtaining information on brain function and structure to identify biomarkers of disease burden.”

Researchers say larger studies with more patients will be needed to confirm their findings, as well as long-term tracking of brain changes from the initial Lyme infection through development of PTLD.

Nearly 500,000 people are believed to get Lyme disease each year in the United States. Diagnoses of Lyme have soared over the past 15 years, according to a recent analysis of insurance claims that found Lyme cases rose 357% in rural areas and 65% in urban areas. The highest rates of Lyme were in New Jersey, Vermont, Maine, Rhode Island and Connecticut.

Lyme Disease Cases Soar in U.S.

By Pat Anson, PNN Editor

Diagnoses of Lyme disease in the United States have soared over the past 15 years, primarily in rural areas in the Northeast, according to a new analysis of private insurance claims by FAIR Health, a nonprofit that tracks healthcare costs and insurance trends.   

Lyme disease is a bacterial illness spread by ticks. Left untreated, it can lead to chronic fatigue, muscle and joint pain, cognitive issues and other long-term symptoms that are often misdiagnosed as fibromyalgia, neuropathy or autoimmune disorders.

In its analysis of over 36 billion insurance claims from 2007 to 2021, FAIR Health said that claims with a Lyme disease diagnosis rose 357 percent in rural areas and 65 percent in urban areas. The highest rates of Lyme disease were in New Jersey, Vermont, Maine, Rhode Island and Connecticut.

“Lyme disease remains a growing public health concern. FAIR Health will continue to use its repository of claims data to provide actionable and relevant insights to healthcare stakeholders seeking to better understand the ongoing rise of Lyme disease cases,” FAIR Health President Robin Gelburd said in a press release.

The FAIR Health study found that malaise, fatigue and soft-tissue-related symptoms were significantly more common in Lyme patients than in the overall patient population.

Other early symptoms of Lyme disease include fever, chills, headache, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite. The rash grows in size and sometimes resembles a bulls-eye.

Although Lyme disease is treatable with antibiotics, some patients develop long-term symptoms known as Lyme disease syndrome or chronic Lyme disease.

About 30,000 Lyme cases are reported annually by state health departments. The CDC estimates the actual number of cases is probably much higher and that about 300,000 Americans may become infected every year.

Most reported cases of Lyme disease occur in the Northeast, mid-Atlantic and upper Midwest, especially during the summer months when more people spend time outdoors. Recent studies show Lyme is spreading to neighboring states and is no longer just a seasonal disease, possibly due to the effects of climate change.

12 Holiday Gifts on Living With Chronic Pain and Illness

By Pat Anson, PNN Editor

Would you like to know how to avoid paying for inflated medical bills? Where and how to find a good CBD pain reliever? What really killed Elvis Presley? And just who is Patient Z?

The answers to these and other questions can be found in our annual holiday gift guide. If you live with chronic pain or illness and want to have a friend or family member get a better understanding of what you're going through -- here are 12 books that would make great gifts over the holidays. Or you can always “gift” one to yourself.

Click on the book cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

The Pain Gap by Anushay Hossain

Anushay Hossain nearly died during 30 hours of labor in a U.S. hospital, her pain so severe due to a botched epidural that she shook uncontrollably. An emergency C-section saved her and the baby. That traumatic experience led Hossain to write this book about sexism and racism in healthcare, in which she shares the real life stories of women who have been “dismissed to death” by medical neglect.

The Strange Medical Saga of Elvis Presley by Forest Tennant

Ever since Elvis Presley’s death in 1977 at the age of 42, rumors have persisted about what happened. Did Elvis die of a heart attack or drug overdose? Dr. Forest Tennant sets the record straight with an inside look at Presley’s chronic health problems, including the possibility that he had Ehlers Danlos syndrome, a connective tissue disease that made it easier for Elvis to gyrate and dance — but ultimately may have led to his early death.

All’s Well by Mona Awad

A novel about a frustrated actress whose career is cut short by chronic pain. She reinvents herself as a college theater director, only to find her student cast is openly skeptical about her pain. To get revenge, she finds ways for people who dismiss her pain to experience it for themselves. Written by best-selling author — and chronic pain sufferer — Mona Awad.

Chronically Empowered by Jessica Cassick

This book is a collection of inspirational short stories told by 65 artists, entrepreneurs and advocates who all live with a chronic illness. Each author describes how they struggled to overcome the adversity that comes with a life-changing illness, and learned how to adapt and thrive through passion and advocacy.

The Way Out by Alan Gordon

Psychotherapist Alan Gordon believes pain sufferers can break the cycle of chronic pain through the use of Pain Reprocessing Therapy (PRT), a form of mindfulness and cognitive behavioral therapy. PRT is based on the premise that the brain can generate pain even after an injury has healed, and that people can “unlearn” that pain by forming new brain connections.

Patient Z by Stefan Franzen

A comprehensive and well-researched book by chemistry professor Stefan Franzen, PhD, that looks at pain, addiction and the opioid crisis through the eyes of a patient. “Patient Z” can’t find good pain care because opioid medication has been criminalized and the field of pain management hijacked by regulators, anti-opioid activists and drug companies. There are millions of people like Patient Z who are caught in the middle of a growing pain crisis.

The Essential Guide to CBD by Reader’s Digest

You know CBD has gone mainstream when the Reader’s Digest publishes a book about it. This beginner’s guide to cannabidiol explains how CBD works and various ways to consume it, with anecdotes from people who use CBD to relieve pain and over two dozen medical conditions, from anxiety and migraines to acne and PTSD. The book is easy to understand and backed up with research — with good advice on where to buy reliable CBD products.

Recovery from Lyme Disease by Dr. Daniel Kinderlehrer

A book for both doctors and patients on a tick-borne disease that has infected over one million Americans, about 20% of them becoming chronically ill. Dr. Daniel Kinderlehrer became infected himself, and used his background in holistic and internal medicine to develop an integrative guide to diagnosing and treating Lyme disease with antibiotics, disulfiram, cannabis and other promising new therapies.

Exercised by Daniel Lieberman

Harvard professor Daniel Lieberman looks at the evolutionary history and myths about physical exercise. While important for overall health, Lieberman says exercise in small doses — simply getting up and moving — can be just as effective as running marathons or becoming a gym rat. Even just learning how to sit properly can exercise core muscles, help keep you fit, and significantly reduce back pain.

An Anatomy of Pain by Dr. Abdul-Ghaaliq Lalkhen

Anesthesiologist Abdul-Ghaaliq Lalkhen takes a deep dive into how the human mind and body experience pain and adapt to it. Lalkhen says pain is a complex mix of nerve endings, psychology, social attitudes and a person’s tolerance for discomfort. Each individual and circumstance is different. While acute pain from a broken bone or injury is easily accepted by society, pain that becomes chronic is often misunderstood and stigmatized.

Drug Use for Grown-Ups by Carl Hart

Columbia University psychology professor Carl Hart says all recreational drugs should be legally available for adult consumption. A regulated drug supply with uniform quality standards would be safer, create jobs, generate millions of dollars in tax revenue, and reduce accidental drug overdoses. Hart believes current drugs laws are unjust and their enforcement often racist.

Never Pay the First Bill by Marshall Allen

ProPublica reporter Marshall Allen wrote this book as a “guerilla guide” for patients who want to understand and contest inflated medical bills. One of his unconventional tips is to bypass your health insurance by purchasing drugs and medical devices on your own, without the markup seen in some insurer-negotiated rates. Allen also explains what to do and say in the hospital to avoid paying for procedures that are unnecessary.

These and other books and videos about living with chronic pain and illness can be found in PNN’s Suggested Reading section.

Insurance Claims Show Lyme Disease More Widespread

By Pat Anson, PNN Editor

A new analysis of insurance claims by the Centers for Disease Control and Prevention suggests that Lyme disease may be far more widespread in the United States than current estimates.

CDC researchers looked at data from MarketScan, a large commercial insurance claims database, and found that Lyme disease diagnoses from 2010 to 2018 were six to eight times higher than the number of cases reported to a federal disease surveillance program.

Lyme disease is a bacterial illness spread by ticks. When left untreated, it can lead to chronic disorders such as fatigue, muscle and joint pain, cognitive issues and other symptoms that are often diagnosed as fibromyalgia, neuropathy and autoimmune disorders.

Most reported cases of Lyme disease occur in 14 states in the Northeast, mid-Atlantic and upper Midwest, especially during the summer months when more people spend time outdoors. Recent studies show Lyme is spreading to neighboring states and is no longer just a seasonal disease, possibly do to the effects of climate change.

The CDC analysis of insurance claims filed by nearly 23 million Americans identified over 140,000 people who were diagnosed with Lyme disease during the study period. That works out to a nationwide rate of 73 cases for every 100,000 people, a rate substantially higher than the 9 cases per 100,000 reported by the surveillance program.

“Age and sex distributions among Lyme disease diagnoses in MarketScan were similar to those of cases reported through surveillance, but proportionally more diagnoses occurred outside of peak summer months, among female enrollees, and outside high-incidence states,” wrote lead author Amy Schwartz, an epidemiologist in the CDC’s Bacterial Diseases Branch.

Schwartz and her colleagues say the larger number of Lyme cases reported by MarketScan may be the result of misdiagnoses, but the volume of claims warrant further investigation.

“Although Lyme disease diagnoses identified from claims data are not supported by the robust evidence of infection required for surveillance reporting, they are a consistent indicator of trends in the healthcare system. In addition, the sheer volume of data available through MarketScan provides potential for new insights into the epidemiology of Lyme disease diagnoses in the United States,” they said.

The CDC findings are similar to a 2017 analysis of insurance claims by the non-profit FAIR Health, which found an unexpected surge in Lyme disease cases during the winter and early spring.

Early symptoms of Lyme disease include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite. The rash grows in size and sometimes resembles a bulls-eye. Lyme disease is usually treated with antibiotics.

About 30,000 cases of Lyme disease are reported annually by state and local health departments to the surveillance program. The CDC acknowledges, however, that the actual number of cases is probably much higher and that about 300,000 Americans may become infected every year.

12 Holiday Gifts on Life With Chronic Pain

By Pat Anson, PNN Editor

If you live with chronic pain or illness and want to have a friend or family member get a better understanding of what you're going through -- here are 12 books and videos that would make great gifts over the holidays. Or you can always “gift” one to yourself.

Click on the cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon. As an Amazon Associate, we earn from qualifying purchases. 

Finding a New Normal: Living Your Best Life with Chronic Illness by Suzan Jackson

For nearly 20 years, Suzan Jackson has lived with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — a condition she shares with two of her sons. In this book, Jackson shares what she and her family have learned about living well with chronic illness and finding a “new normal” through strong relationships, healthy emotions and finding joy in everyday life. The emphasis is on living life, not just enduring it.

War on Us by Colleen Cowles

Lawyer Colleen Cowles looks at how the war on drugs and myths about addiction have created a dysfunctional drug policy that prosecutes doctors for treating pain and stigmatizes patients for seeking relief. The U.S. has spent over a trillion dollars fighting the war and has little to show for it except some of the highest rates of addiction, overdose and incarceration anywhere in the developed world.

Ketamine Infusions: A Patient’s Guide by Berkley Jones

Berkley Jones looks at the increasing use of ketamine, a non-opioid analgesic, in treating chronic pain, depression, post-traumatic stress disorder and anxiety. This book is a useful guide if you are considering ketamine infusions and want to know how to select a provider, what to expect during infusions and possible side effects. Although primarily used to treat depression, some pain patients say ketamine is effective in treating neuropathy and CRPS.

Bitten: The Secret History of Lyme Disease and Biological Weapons by Kris Newby

Author Kris Newby began looking into the origins of Lyme disease after she was bitten by a tick and became seriously ill. Her research led her to a secret U.S. government program during the Cold War that used insects as biological weapons to spread disease. Newby believes the Lyme outbreak that began 50 years ago and has infected millions of Americans may have been the result of a military experiment gone wrong.

Vagina Problems: Endometriosis, Painful Sex and Other Taboo Topics by Lara Parker

A memoir by Lara Parker that explores — with unflinching honesty — her battle with endometriosis, a chronic vaginal condition that makes daily life difficult and sex painful. As a teenager, doctors initially dismissed Parker’s pain as “bad period cramps” and suggested her pain was psychological. She nearly checked herself into a mental institution before finally getting a proper diagnosis.

A Quick Guide to CBD by Dr. Julie Moltke

CBD won’t cure you of chronic pain, but Dr. Julie Moltke says cannabidiol can reduce pain, inflammation, anxiety and insomnia — and help make life more livable. This handbook is intended for beginners who want to learn how and when to take CBD, and are puzzled by all the hype surrounding vapes, oils, gummies and edibles on the market.

Pain Warriors by Tina Petrova

A documentary produced by patient advocate Tina Petrova that examines the poor treatment and medical neglect faced by millions of pain sufferers in North America. The film is dedicated to Sherri Little, a chronic pain patient who committed suicide after one last attempt to get effective treatment. Available on DVD or for streaming on Amazon Prime.

Together: The Healing Power of Human Connection by Dr. Vivek Murthy

This timely book by former U.S. Surgeon General Dr. Vivek Murthy looks at the importance of human connections and how loneliness affects our health and society at large. To combat loneliness, Murthy recommends spending at least 15 minutes each day connecting with people we care about and to give them our undivided attention.

Bottle of Lies: The Inside Story of the Generic Drug Boom by Katherine Eban

Wonder why that generic drug you take doesn’t seem to work? About 90% of pharmaceutical drugs are generic and most are manufactured overseas. While generics are promoted as cheaper alternatives to brand name drugs, journalist Katherine Eban found the generic drug industry rampant with greed, fraud and falsified manufacturing data — resulting in many patients consuming drugs that are ineffective or have dangerous side effects.

In Pain: A Bioethicist’s Personal Struggle with Opioids by Travis Rieder, PhD

Travis Rieder is a professor of bioethics at Johns Hopkins University who severely injured his foot in a motorcycle accident and became dependent on opioids while recovering from surgery. In this book, he shares his frustration with the healthcare system and how it often abandons patients to pain, addiction or both. Rieder serves on a CDC advisory panel that is helping the agency prepare an update of its controversial 2016 opioid guideline.

The Chronic Pain Management Sourcebook by David Drum

A comprehensive guide about chronic pain by medical journalist David Drum, who summarizes the many causes, types and treatments of pain. Drum also has tips on managing stress, anxiety, lack of sleep and depression. The book is easy to understand and would be a useful resource for family members, friends and caretakers who want to understand and help someone living with chronic pain.

A Little Book of Self Care: Trigger Points by Amanda Oswald

This well-illustrated book provides 40 simple, step-by-step exercises you can use to manage back pain, migraine and other painful conditions. Author Amanda Oswald explains how “trigger points” — small knots of muscles and connective tissue — can be relieved through self-massage and the “power of touch” without visiting a chiropractor or physical therapist.

These and other books and videos about living with chronic pain and illness can be found in PNN’s Suggested Reading section.

New Lyme Disease Test Could Lead to Earlier Treatment

By Pat Anson, PNN Editor

At long last, scientists are close to developing a new test to detect Lyme disease weeks sooner than current tests -- allowing patients to begin treatment earlier.

Lyme disease is a bacterial illness spread by ticks. Left untreated, it can lead to chronic conditions such as joint and back pain, chronic fatigue, fibromyalgia and neuropathy.

Borrelia burgdorferi was first identified as the bacteria that causes Lyme disease in 1983.  The antibody tests currently used to detect Borrelia were developed a decade later and have a number of shortcomings. They can take up to three weeks to get results and cannot distinguish between an active infection or an old one.

A team of scientists recently reported in the journal Clinical Infectious Diseases that advances in molecular diagnostics should make a new DNA test for Borrelia technically feasible.

“These direct tests are needed because you can get Lyme disease more than once, features are often non-diagnostic and the current standard FDA-approved tests cannot distinguish an active, ongoing infection from a past cured one,” said lead author Steven Schutzer, MD, a physician-scientist at Rutgers New Jersey Medical School.

“The problem is worsening because Lyme disease has increased in numbers to 300,000 per year in the United States and is spreading across the country and world.”

Early symptoms of Lyme disease include fever, chills, headaches, fatigue, muscle and joint aches, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite, which resembles a ring or bulls-eye. When there is no rash, a reliable laboratory test is needed to detect an active disease.

“The new tests that directly detect the Lyme agent’s DNA are more exact and are not susceptible to the same false-positive results and uncertainties associated with current FDA-approved indirect tests,” said Schutzer.

Lyme disease is usually treated with antibiotics, but some patients experience complications that lead to Lyme disease syndrome (PTLDS), with long-term symptoms such as fatigue, muscle and joint pain and cognitive issues. Autoimmune diseases have also been associated with chronic Lyme disease.

Lavigne Keeps ‘Head Above Water’ with Lyme Disease

By Pat Anson, PNN Editor

Lady Gaga isn’t the only celebrity speaking out about her battle with chronic pain and illness.

Pop star Avril Lavigne has released a new album called “Head Above Water” that was inspired by her battle with Lyme disease -- a bacterial infection usually spread by ticks that can lead to severe pain and chronic fatigue if it’s not treated and diagnosed early.

That’s what happened to Lavigne, who thought she just had the flu when she started having symptoms in 2014. It took several months for her to get a correct diagnosis.

“I was seeing every specialist, literally the top doctors, and they would pull up their computer and (say) ‘Chronic fatigue syndrome’ or “Why don’t you try to get out of bed Avril and just go play the piano? Are you depressed?’” Lavigne said in an emotional interview on Good Morning America.

“This is what they do to a lot of people that have Lyme disease. They don’t have an answer for them, so they tell them they’re crazy.”

The 33-year old singer eventually found a Lyme specialist who diagnosed her correctly. By then she was bedridden.

“One night, I thought I was dying, and I had accepted that I was going to die. My mom laid with me in bed and held me. I felt like I was drowning,” Lavigne wrote on her website.

AVRIL LAVIGNE

“Under my breath, I prayed ‘God, please help to keep my head above the water.’ In that moment, the song writing of this album began. It was like I tapped into something. It was a very spiritual experience. Lyrics flooded through me from that point on.”

Although the single “Head Above Water” is about Lyme disease, anyone bedridden or housebound by chronic pain or illness can probably relate to it.

Lavigne went public about her battle with Lyme disease in 2015, but it was another two years before she was well enough to sit at a piano and started composing music again.

“I fought Lyme disease on antibiotics and herbs for two years. I tried to have a life, but was in bed the majority of the time, and it was very up and down with good days and bad days,” Lavigne explained.

“When you’re in bed for the better part of two years, you lose muscle mass and your entire body gets weak. I’ve had to work to get my endurance up. ‘Head Above Water’ was the first song that I sang. I was fresh off not singing for two years. I thought my voice would be weak, it ended up being stronger than ever. The break happened to actually be good for my vocal cords.”

“Head Above Water” is the sixth album for the Canadian born singer, who has been nominated for eight Grammy Awards. Her single “Girlfriend” was the first music video to reach 100 million views on YouTube. Her foundation – the Avril Lavigne Foundation – raises awareness and supports people with Lyme disease and other chronic illnesses.

Medical Cannabis Saved My Life

By Tammy Malone, Guest Columnist

People are talking about the addicts who are overdosing due to the opioid epidemic. Maybe we should start talking about the people who take opioids just to be able to function in life. 

Chronic intractable pain is a terrible way to live.  I know from experience that when you live in that much pain, you get to a point where all you can see is the ultimate way out.  Chronic pain is blinding.  It blinds you from life, family, joy and happiness.  It robs you of your hopes and dreams, until you are left withering, suffering and asking yourself, "Is this all my life is ever going to consist of? Living in so much pain?"

Too many of us are forced to live this way. For some, it is just too much to bear and suicide is our only way out.  

I can honestly say I have thought of this.  I was in so much pain I was contemplating suicide. Then I found a compassionate, caring group of doctors at a Tennessee pain clinic and my life was spared.  I was given shots, acupuncture, and massage.  I started an anti-inflammatory diet that helps slow down the destruction of Lyme disease, which is breaking down the joints and bones in my body. 

I was also put on a manageable dose of the opioid medication Demerol.  For 6 years, I had my  dreams back. I could see a future filled with family, friends,  joy and happiness. 

My body is still breaking down and nothing is going to change that.  I'm 53 and have the spine of a 90 year old.  I've shrunk over half an inch due to the discs deteriorating in my back. I've had 3 discs removed and my spine fused. Both knees are bone on bone.  My hip joints have deteriorated and my shoulders are blown out. I have fluid pockets in many of the joints, so it's not only painful but difficult to move. 

This destruction is not going to stop or get better, and I don't care how many Tylenol you throw at it,  it won't touch the pain.  But the pain management clinic helped me exist.  The opioids helped me function  and have a life beyond the blinding pain.  It gave me another 2,372 days with my family and friends. 

TAMMY MALONE

Then came the War on Opioids. My doctor discussed the issues this war was having on his practice and what it meant for his patients. What it was going to ultimately mean for me.  To say I was in a panic is an understatement.  The thought of returning to a life in that much pain was unfathomable. 

I knew I had about 6 months before the do-gooders and Big Brother were going to push my doctor to start tapering me down. We discussed the other options, which we had or were already doing, and I cried.  I knew what was coming.  An unacceptable existence. 

This was the same time my parents had talked about getting me and my husband a plane ticket to Montana for a mini-vacation at our family cabin in the Rockies.  I really thought it was going to be my last family vacation. Because in a year,  I wouldn't be around. Suicide was already in my forethought. 

Although the stress of it all had begun to increase my pain levels, I agreed to go.  The night I stepped off the plane, my ankles swelled to the size of my calves and I couldn't walk. In 11 days at the family cabin, I lost 22 pounds due to inflammation,  elevation and the dryness of the mountain air. But I enjoyed the vacation and was happy I went. 

I also learned that Montana was a medical marijuana state.

Over the next couple of weeks back home in Tennessee, I asked my entire team of doctors, seven in all, what they thought about medical cannabis. With the exception of my neurologist, they all agreed it might be an option.  So we sold our dream property, got rid of our horses, sold everything in Tennessee and moved to Montana.  

Starting Medical Cannabis

I'd like to say everything is 100% better, but that wouldn't be accurate.  Moving to Montana and starting medical cannabis has been a challenge.  After an incredibly stressful time of trying to find doctors who would even look at my medical records, I was able to find a compassionate doctor in Helena named Dr. Mark Ibsen.  He went over my medical history, looked at my extensive list of medications, and reviewed my medical folders, MRI's and x-rays. After an hour of discussion, he agreed to take me on.  I cried with relief.  He was my lifeline.

It took 6 months to taper me off my pain meds and reduce the other 44 pills I took everyday down to 7.  Trying to find the right strain of medical cannabis hasn't been easy. I don't like to feel high or drugged (Demerol never made me feel that way), and finding the proper dosage of cannabis has been a challenge. 

Cannabis doesn't relieve the pain completely. While Demerol kept the pain manageable at a 3-4 level, cannabis keeps me at a level 6, which is uncomfortable most days.  Occasionally,  when I overdo things,  I can spend 24 to 36 hours at a level 8.5. Those are the days I wish I was still taking the opioids or at least had them as an option.

All in all, I was lucky.  I was lucky my parents thought to give me a vacation that unexpectedly showed me there was another medical option. I was lucky my husband agreed that we should sell everything and try Montana.  I was also lucky to find a compassionate doctor. It saved my life. 

But I also think about all the other pain patients who do not have options.  The "War on Opioids" has become a "War on Pain Patients."  I did some research and found the opioid overdose numbers being publicized include all overdoses from heroin.  These are addicts who are dying, not pain patients.

Not too long ago, I had a supposed friend call me an addict because she had preconceived idea of how I was living my life.  That taking pain meds to function made me the same as her opioid-addicted son, someone who did whatever it took to get his fix.  She hurt me and it cost a friendship, but it also made me see that too many of us are getting labeled.

Things need to change.  We need to be heard and we need to tell our stories.  We don't need to have people in Washington, DC leave us with suicide as the only option of living a pain free life. Too many of us are dying as it is.  Please leave our pain management doctors alone as they are our lifeline to the future. 

Tammy Malone lives with complex late-stage Lyme disease and Bartonella, a bacterial infection of the blood vessels. Both are spread by ticks. Tammy was first bitten by a tick in 2008.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Can Stem Cells Treat Lyme Disease?

By A. Rahman Ford, PNN Columnist

In a recent article in Scientific American, author Mary Beth Pfeiffer paints a startling portrait of Lyme disease in America.  She describes the “peril and menace” now associated with many forests, parks and even some backyards -- landscapes that Lyme disease-carrying ticks inhabit in ever-increasing numbers. 

“Although children are the most frequently diagnosed group and thousands of infected patients develop long-term infirmity every year, little has been done to curb the spread of the ticks,” Pfeiffer wrote. 

According to the article, the primary reason for the explosion in Lyme disease is that mainstream medicine continues to labor under the long-disproven myth that the disease is easy to diagnose and treat.  In truth, diagnosis is complex, and treatment options are woefully inadequate and sometimes even dangerous. 

According to the Centers for Disease Control and Prevention , Lyme disease is the most common vector-borne illness in the U.S.  It is transmitted by the bite of a blacklegged tick, or deer tick, that is infected with Borrelia burgdorferi or Borrelia mayonii bacteria. 

Deer ticks tend to thrive in woody or grassy areas.  Although most cases are reported from northeastern states like New Jersey, Connecticut and Maryland, states like Minnesota and Wisconsin have also reported cases. The geographic distribution seems to be expanding, along with an increase in the number of counties reporting Lyme cases.

In 2016, there were over 36,000 confirmed or probable cases of Lyme disease, although the actual number may be ten times as high. Common symptoms include a small red bump at the site of the tick bite, which can expand into a rash that forms into a bull’s-eye pattern.  Flu-like symptoms are also common. 

If Lyme disease is left untreated, multiple symptoms may emerge which may be dermatological, musculoskeletal, neurological and/or cardiovascular in nature.  Symptoms can include severe joint pain and swelling, meningitis (swelling of the brain), paralysis, numbness, weakness of the limbs and impaired muscle movement.  These symptoms can last for months or even years.  Because they tend to mimic the symptoms of other diseases, Lyme is often misdiagnosed.

There is no consistently reliable test for Lyme disease and diagnosing it can be tricky.  Oftentimes, patients do not present with a rash or any other common symptoms.  Laboratory tests, like enzyme-linked immunosorbent assay (ELISA), which are designed to detect bacterial antibodies, can give false positives.  And the Western Blot test, used to confirm ELISA results, has no standard criteria for interpretation.

Treatment for Lyme disease is likewise problematic.  The standard course of treatment is a 14 to 21 day course of oral antibiotics.  If the patient presents with neurological symptoms, intravenous administration may be preferred.  According to the Mayo Clinic,  “after treatment, a small number of people still have symptoms, such as muscle aches and fatigue,  the cause of these continuing symptoms, known as post-treatment Lyme disease syndrome, is unknown, and treating with more antibiotics doesn’t help.”

However, many holistic practitioners disagree, contending that the number of patients with post-treatment symptoms is far larger than estimated, and an extended course of antibiotics – or other treatment modalities – may be warranted.  Several of these physicians have had their licenses revoked, faced other disciplinary actions for ethics violations, or even been sent to prison.

Stem Cells and Lyme Disease

Given that the standard course of treatment fails many Lyme disease patients, alternative therapies are needed.  Stem cells may be a viable option to treat symptoms associated with Lyme disease syndrome because they are inflammatory in nature.  Mesenchymal stem cells, which may be readily obtained from bone marrow or adipose (fat) tissue, are known to possess immunomodulatory properties.  This means they could potentially lower inflammation and resolve the stubborn persistent Lyme symptoms that refuse to respond to conventional antibiotic therapies. 

KELLY OSBOURNE

Although the evidence for the efficacy of stem cell therapy in treating Lyme disease is largely anecdotal, the stories are compelling.

In one high-profile case, former E!’s Fashion Police host and Project Runway Junior judge Kelly Osbourne details her experience with Lyme disease in her memoir.  

In 2004, Osbourne was bitten by a tick from a reindeer at her father Ozzy’s 56th birthday party.  As a result of the bite, she suffered for a decade with “traveling pain” from a sore throat and stomach aches, which eventually led to a seizure on the set of Fashion Police.

 Osbourne was later diagnosed with epilepsy and prescribed drugs that, in her words, “turned her into a zombie.”  She went from taking Ambien to Trazodone to painkillers to anxiety medication.

After visiting an alternative medical practitioner, Osbourne tested positive for Lyme disease.  Rather than try to treat the disease with antibiotics, she went to Germany for stem cell therapy.  That therapy was a success.  In her words, “I was experiencing emotions and feelings again.” 

Osbourne initially kept quiet about what she calls her “cure” because she feared retribution from pharmaceutical companies.  She has since become an advocate for stem cell therapy.

Patients suffering from chronic Lyme disease need options.  Stem cell therapy could be one of them.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Insurance Claims Climb for Lyme Disease

By Pat Anson, Editor

Private insurance claims with a diagnosis of Lyme disease have soared in the U.S. over the past decade, according to a new report by FAIR Health, a nonprofit that tracks healthcare costs and insurance trends.

Lyme disease is a bacterial illness spread by ticks. It can also lead to other chronic pain conditions such as joint and back pain, chronic fatigue, fibromyalgia and neuropathy.

Fair Health analyzed a database of 23 billion private insurance claims from 2007 to 2016, and found that claims with a diagnosis of Lyme disease increased by 185 percent in rural areas and 40 percent in urban areas.

A recent CDC study also found the number of Lyme disease cases increasing, with nearly 40,000 confirmed and probable cases in 2015.

"Lyme disease is growing as a public health concern,” said FAIR Health President Robin Gelburd

Although Lyme disease historically has been concentrated in the Northeast and upper Midwest, the FAIR Health study suggests that it is spreading geographically. In 2007, insurance claims with diagnoses of Lyme disease were highest in New Jersey, Rhode Island, Connecticut, Massachusetts and New York.

By 2016, the top states were Rhode Island, New Jersey, Connecticut, North Carolina and New York -- with the emergence of North Carolina suggesting significant expansion to a new region.

Summer is the peak season for Lyme disease, with insurance claims more common in rural than in urban settings, according to the FAIR Health report. In the winter and early spring (December through April), claims involving Lyme disease were reported more often in urban than rural settings.

Age is also a differing factor in rural and urban environments. In rural settings, claims with Lyme disease diagnoses were more common for middle-aged and older people. Patients aged 41 years and older accounted for nearly two-thirds of the rural diagnoses. In urban populations, younger individuals with Lyme disease accounted for a higher percentage of claims.

Lyme disease is usually treated with antibiotics, but some patients experience complications that lead to Lyme disease syndrome (PTLDS), with long-term symptoms such as fatigue, muscle and joint pain and cognitive issues. Autoimmune diseases have also been associated with chronic Lyme disease.

Left untreated, Lyme disease can lead to serious chronic conditions, as Sarah Elizabeth Hirschle shared with us recently.

For patients with a Lyme disease diagnosis, FAIR Health reported the most common subsequent diagnoses were:

• Joint pain (dorsalgia, low back pain, hip and knee pain)
• Chronic fatigue  
• Soft tissue disorders (myalgia, neuralgia, fibromyalgia)
• Hypothyroidism

lyme disease rash

Early symptoms of Lyme disease include fever, chills, headaches, fatigue, muscle and joint aches, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite. The rash grows in size and sometimes resembles a bulls-eye.

To see some tips from the CDC on how to avoid tick bites, click here.