Important Read

By Fred Diamond

Many listeners of my Love, Hope, Lyme podcast ask me to go deeper on some treatment topics that I mention in my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know.” One such topic is hyperbaric oxygen treatment (HBOT).

On today’s Love, Hope, Lyme podcast, Dr. Mo Elamir of the Aviv Clinics in Florida clarifies what HBOT is and how it may benefit those with persistent Lyme disease.

Breathing new life into Lyme treatment

Amidst the search for effective treatments, HBOT has emerged as a compelling approach, possibly offering new hope for those battling the persistent effects of chronic Lyme disease.

HBOT involves breathing pure oxygen in a pressurized environment. This method significantly increases the amount of oxygen in the blood, facilitating the body’s natural healing processes.

Dr. Elamir, a leading physician at Aviv Clinics, explains the transformative impact of HBOT on Lyme disease patients: “By increasing the oxygen levels in the body under pressure, HBOT can break through the biofilm that protects Lyme bacteria, which are often anaerobic and thrive in low-oxygen environments. This process can destroy the bacteria and lead to significant improvements in neurological function.”

The specific HBOT protocol used at Aviv Clinics involves fluctuating oxygen levels, a technique designed to trigger the body into a state of healing. This healing process includes the growth of new stem cells and blood vessels, improved mitochondrial function, and the repair of damaged brain tissue.

“Our approach is highly individualized, focusing on each patient’s unique needs and the specific ways Lyme has affected their neurological health,” says Dr. Elamir.

How Lyme impacts the brain

Lyme disease affects an estimated 60 million people worldwide in its chronic stage. The disease can invade various parts of the body, including the brain, where it causes a range of neurological symptoms.

These symptoms can be particularly challenging to diagnose and treat, often leaving patients in a state of cognitive fog, battling memory loss, and struggling with anxiety and depression.

Dr. Elamir provides critical insights into how Lyme disease can affect the brain. “The bacteria that cause Lyme disease, Borrelia burgdorferi, are spirochetes that can invade the brain, leading to symptoms such as brain fog, memory problems, anxiety, depression, and even issues with movement, coordination, and balance,” he explains.

“These symptoms can vary greatly from person to person, depending on how the disease affects their nervous system.”

One of the most challenging aspects of chronic Lyme disease is that its neurological effects are often dismissed or misdiagnosed.

“Standard tests like MRIs and nerve conduction studies may not reveal the subtle dysfunctions caused by Lyme,” Dr. Elamir points out. “As a result, many patients are told that their symptoms are ‘all in their head,’ leading to frustration and a sense of isolation.”

Stress: a catalyst for symptom reactivation

Stress plays a significant role in the reactivation of Lyme symptoms. Dr. Elamir explains that various stressors—whether physical, emotional, or even as minor as a common cold—can trigger the dormant spirochetes in the brain to become active again.

“Stress can cause these bacteria, which might have been lying dormant in the brain, to reemerge, leading to a resurgence of neurological symptoms,” he notes. This makes stress management a critical component of care for Lyme survivors.

The spirochetes’ ability to remain dormant and reemerge under stress is one of the reasons why Lyme disease can be so difficult to treat. Even after successful treatment with antibiotics, the bacteria can remain hidden in the body, waiting for an opportunity to resurface.

Comprehensive assessment and tailored treatment

At Aviv Clinics, treatment begins with a comprehensive assessment that spans three to five days. This in-depth evaluation includes structural and functional imaging of the brain, neurocognitive testing, and a thorough medical evaluation. One of the key tools used in this assessment is SPECT (Single Photon Emission Computed Tomography) scanning.

“SPECT scans allow us to see the metabolic function or dysfunction within the brain,” Dr. Elamir explains. “This is crucial because standard MRIs primarily show the structure of the brain, but SPECT scans give us a clearer picture of how Lyme disease has affected the patient’s neurological health.”

Based on the assessment, the clinic develops a personalized treatment plan that includes HBOT as a cornerstone therapy. But HBOT is just one component of a broader treatment protocol that also includes neurocognitive training, physical therapy, vestibular therapy (for balance issues), and psychotherapy.

Healing the mind alongside the body

Psychotherapy plays a crucial role in the recovery process for many Lyme survivors. As the brain begins to heal, patients may experience a resurfacing of traumatic memories or new psychological challenges. The clinic’s psychotherapists work closely with patients to help them navigate these changes and provide them with the tools they need to cope.

Cognitive Behavioral Therapy (CBT) is one of the most common forms of psychotherapy used at Aviv Clinics.

“CBT helps patients understand their symptoms, process their emotions, and develop strategies for managing anxiety, depression, and other psychological challenges,” says Dr. Elamir. Group therapy sessions are also offered, allowing patients to connect with others who are going through similar experiences.

The role of diet in neurological health

Diet is another critical aspect of treatment at Aviv Clinics. Dr. Elamir emphasizes the importance of following a diet that supports neurological health.

“One of the most effective diets for this purpose is the ketogenic diet, which has shown significant benefits for people with neurological conditions,” he says.

Originally developed for children with epilepsy, the ketogenic diet involves consuming high-fat, low-carbohydrate foods that induce a state of ketosis, where the body burns fat for fuel instead of carbohydrates. This can lead to improvements in brain function and a reduction in neurological symptoms.

Intermittent fasting is another dietary approach that can be beneficial for Lyme survivors.

“Intermittent fasting has been shown to improve metabolic processes and reduce inflammation, which can support the healing process in Lyme disease,” notes Dr. Elamir. This involves eating all meals within a specific window of time each day, such as an eight-hour period, and fasting for the remaining 16 hours.

Dr. Elamir also advises patients to reduce their intake of processed sugars, which can exacerbate inflammation and contribute to chronic health issues. “Minimizing sugar intake is essential in managing Lyme disease because it is characterized by chronic inflammation,” he explains.

Addressing co-infections

Co-infections are a common complication of Lyme disease. These are other infections transmitted by the same tick that carries Lyme disease, such as Bartonella and Babesia. These co-infections can cause their own set of symptoms and make the treatment of Lyme disease more complex.

“HBOT can also be effective in treating these co-infections,” says Dr. Elamir. “The increased oxygen levels can help destroy the bacteria responsible for these infections, while the overall treatment protocol supports the repair of any damage caused by the body’s immune response to the infection.”

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Learn more about the Aviv Clinics here.

Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. PM Fred on Facebook for your copy.

Melinda

Important Read

By City University of New York

A team led by CUNY Graduate Center biologists has produced a genetic analysis of Lyme disease bacteria that may pave the way for improved diagnosis, treatment, and prevention of the tick-borne ailment.

Weigang Qiu, a professor of biology at the CUNY Graduate Center and Hunter College, and an international team mapped the complete genetic makeup of 47 strains of Lyme disease-related bacteria from around the world. This created a powerful tool for identifying the bacterial strains that infect patients.

More accurate tests and treatments?

Researchers said this could enable more accurate diagnostic tests and treatments tailored to the bacteria causing each patient’s illness.

“By understanding how these bacteria evolve and exchange genetic material, we’re better equipped to monitor their spread and respond to their ability to cause disease in humans,” said Qiu, the corresponding author of the study.

The study was published in mBio, the flagship journal of the American Society for Microbiology.

Researchers said the genetic information uncovered in the study may help scientists develop more effective vaccines against Lyme disease.

Lyme disease is the most common tick-borne illness in North America and Europe, affecting hundreds of thousands of people a year. The disease arises from bacteria belonging to the Borrelia burgdorferi sensu lato group, which infect people through the bite of infected ticks. Symptoms can include fever, headache, fatigue, and a characteristic skin rash. If left untreated, the infection can spread to joints, the heart, and the nervous system, causing more severe complications.

Case numbers are increasing steadily, with 476,000 new cases each year in the United States, and may grow faster with climate change, the authors of the study said.

The research team sequenced the complete genomes of Lyme disease bacteria representing all 23 known species in the group. Most hadn’t been sequenced before the effort. The National Institutes of Health-funded project included many bacteria strains most associated with human infections and species not known to cause disease in humans.

Evolutionary history of Lyme bacteria

By comparing these genomes, the researchers reconstructed the evolutionary history of Lyme disease bacteria, tracing the origins back millions of years. They discovered the bacteria likely originated before the breakup of the ancient supercontinent Pangea, explaining the current worldwide distribution.

The study also disclosed how these bacteria exchange genetic material in and between species. This process, known as recombination, allows the bacteria to rapidly evolve and adapt to new environments. The researchers identified specific hot spots in the bacterial genomes where this genetic exchange occurs most frequently, often involving genes that help the bacteria interact with their tick vectors and animal hosts.

To facilitate ongoing research, the team has developed web-based software tools (BorreliaBase.org) that allow scientists to compare Borrelia genomes and identify determinants of human pathogenicity.

Looking ahead, the researchers said they plan to expand their analysis to include more strains of Lyme disease bacteria, especially from understudied regions. They also aim to investigate the functions of genes unique to disease-causing strains, which could uncover new targets for therapeutic interventions.

As Lyme disease expands its geographic range because of climate change, the research provides valuable tools and insights for combating this rising public health threat.

The study is supported by grants from NIH and an award from the Steven and Alexandra Cohen Foundation.

Click here to read the study.

Melinda

Important Read

Dorothy Kupcha Leland

July 18, 2024

The National Academies of Sciences, Engineering, and Medicine (known collectively as NASEM) are private, nonprofit institutions that examine challenging issues and offer advice to the nation.

Academy members are elected based on their outstanding achievements and contributions to their fields. They are considered the cream of the cream.

NASEM works by convening committees of experts from various fields to study specific topics. Sometimes, these committees organize workshops to bring together experts, policymakers, and the public to share knowledge and explore solutions.

That’s what happened July 11, in Washington DC. A NASEM committee held a workshop examining the question of what they called “Lyme infection-associated chronic illness”—or “Lyme IACI.” (Pronounced “Lyme eye-ACK-ee” by most participants, it doesn’t exactly roll off the tongue, does it?)

Apparently, Lyme IACI is the label the committee landed on to avoid the polarizing effects of such terms as “chronic Lyme” or “post-treatment Lyme disease syndrome.”

Based on input from this public workshop as well as a review of medical literature, the committee will develop a report of its findings. This document will put forth recommendations for how to bring about better treatments for people with Lyme IACI.

You may remember that NASEM held a groundbreaking workshop last year that focused on the commonalities of several “long haul” diseases—long COVID, persistent Lyme disease, multiple sclerosis and ME/CFS (chronic fatigue). Read more about last year’s event here: “Words matter.” A new way of thinking about long-haul diseases.

The 2024 conference continued in that vein, but this time focused only on Lyme IACI. The event was significant on several fronts.

Why this matters

For starters, you had important scientists exploring the question of why some people with Lyme disease continue to have symptoms despite treatment. This major change comes after decades of “Lyme denialism,” when medical professionals, health officials, researchers, the NIH, and the CDC, all told us that what we call “chronic Lyme” didn’t even exist. So, just the fact that you have a NASEM committee considering the issue is a huge step forward.

Furthermore, the Lyme community actively participated in the event.

 

 

 

 

 

 

Retired US Air Force Col. Nicole Malachowski—a prominent advocate for those with tick-borne disease—served on the workshop’s planning committee.

Rhisa Parera, the writer/director/producer of the Lyme film “Your Labs are Normal,” delivered a keynote address on the patient perspective.

Read what she told the panel: Patient tells scientists “Lyme is a literal emergency. Help us.”

The committee lined up an impressive array of researchers from prominent academic centers to shed light on the following questions:

• Describe the current state of Lyme IACI research for treatments and diagnostics to clarify barriers in development of new, effective therapeutic interventions;
• Explore recent advancements from other biomedical research fields with the potential to address these barriers by catalyzing scientific breakthroughs or translation of discoveries to treatments;
• Understand patient-defined priorities for research and discuss potential opportunities for engaging this perspective in developing a biomedical research agenda; and
• Discuss research strategies and infrastructure that could facilitate the application of innovations from other fields into the Lyme IACI research context.

See the list of speakers here.

Patient priorities

LymeDisease.org CEO Lorraine Johnson, principal investigator of the MyLymeData project, spoke on a panel about patient-defined priorities for research.

Lorraine Johnson, Principal Investigator of MyLymeData

She emphasized the importance of outcomes that patients themselves care about—namely, getting their health back and being able to return to work and other activities.

But that’s often not the way clinical trials are structured. For example, many are geared to evaluating something called the SF-36 score.

“However, a change in the SF-36 score is not inherently meaningful or important to patients,” Lorraine noted. “This is obvious on its face. If you ask any patient what they want in healthcare – none of them will say, ‘I want to improve my SF-36 score.’”

Videos from the workshop should be available soon. When they are, I strongly recommend you watch Lorraine’s presentation. I think you’ll find it riveting.

More on this event still to come. Stay tuned.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

This is an important conversation and I’m waiting to see what comes out of the meetings.

Melinda

 

Important Read

The ‘Polly Murray Papers’ reveal the horrific symptoms of ground-zero Lyme disease sufferers.

By Kris Newby

Sadness washed over me as I walked through the house in Lyme, Connecticut, where Mary Luckett “Polly” Murray used to live. Built in 1853, it was located in a rural area surrounded by forests, rolling hills, and cranberry bogs. The house needed a fresh coat of paint, and the yard had gone to seed.

The new owner had recently divorced and hadn’t replaced the furniture his ex-wife had taken. There were mattresses on the floor and unfinished projects spilling out of the garage. The owner and his dog seemed unwell. Taking in the scene, I thought, this looks like the flotsam and jetsam of another family destroyed by Lyme disease.

The previous owner, Polly Murray, was an artist, a mother of four sick children, and the disease’s first unofficial epidemiologist. She died in 2019 of Alzheimer’s disease. In the 1960s, she began documenting the bizarre constellation of symptoms that afflicted her family and neighbors living along the Connecticut River. In April, I visited the Medical Historical Library at Yale University to review her original Lyme patient case histories, turning back the pages of time in search of the origins of this mysterious outbreak.

So many questions

These first-hand accounts raised a lot of questions for me. Why did it take 11 years, from 1964 to 1975, for the medical system to take notice and take action?

In 1975, the investigation was assigned to Allen Steere, MD, a young Yale rheumatology fellow who had just returned from a CDC Epidemic Intelligence Service (EIS) assignment in Liberia. Why did Steere narrow the symptomology so soon in the investigation and downplay most of the neurological symptoms? Why did it take six more years to identify the underlying tick-borne bacterium, Borrelia burgdorferi? Did CDC-EIS, the U.S. organization that investigates suspicious disease outbreaks, find it strange that three tick-borne diseases suddenly appeared a few miles from the Plum Island biological weapons lab?

As I looked through the boxes of her notes, I was struck by the unusual nature of the symptoms and the point-source geographic origin. What happened there, and what can we learn from Polly’s eyewitness account?

A map from an early survey of Lyme disease in Connecticut, from the U.S. Centers for Disease Control. [1]

Polly’s case histories

Polly’s family had been sick for decades, and the many doctors they visited couldn’t figure out what was wrong—they’d never seen this combination of crazy symptoms before. In a letter to a journalist, she explained why she became the medical scribe for her community:

“Early in the history of our problems, I realized that my only salvation would be in keeping accurate records of what was going on, as unbelievable as it was. I intuitively felt it very important for anyone with baffling chronic symptoms to put the information down on paper.” [2]

Polly Murray, 1954, on graduation day at Mt. Holyoke College, before her strange symptoms began. [3]

Polly filled boxes with notes on her neighbors’ unusual histories, which included relapsing pain, brain fog, mental breakdowns, kids on crutches, children with developmental problems, seizures, lost jobs, broken marriages (including her own), and children too sick to go to school. As a Lyme-area insider, neighbors told her their heartbreaking stories, from personality changes to suicides. Each family’s tragic history read like crib notes for a Stephen King horror novel.

Huge toll of neurological and psychological symptoms

In one list of 35 cases from the 1990s, I was struck by the large number of patients who reported serious neurological and psychological problems. [2] Here’s a sampling:

Patient No. 1.
Diagnosed Lyme disease. Foot problem, arrhythmia, leg weakness.
Neurologist. Lyme encephalitis?
Psychiatric problems. Paranoia.
Hospitalization. Attempted suicide.
Nursing home with weekends home.

Patient No. 2.
Diagnosed Lyme disease. Mental problems. Seen in Boston. Psych tests, Lupus IV treatment. Alzheimer’s? Stroke? Lyme?
Nursing home.
Died 7/1991. No autopsy.

Patient No. 3.
Lyme disease history. Found outside in a nightgown one winter night, disoriented. Nursing home. Positive Lyme titer.

(You can read the complete list here.) 

In another document, she noted that 22 of her neighbors had heart issues, 26 had neurological symptoms, seven or more suffered from psychosis or depression, and seven had suicidal ideations. [2]

Yet none of these potentially life-threatening symptoms were mentioned in Steere’s “I solved the Lyme mystery” announcements, first at a 1976 conference [4], then in the 1977 article “Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities.” [5] (To be fair, subsequent publications documented some of the neurological symptoms.)

The wrong path

In a move that would send researchers down a dead end for years to come, Steere declared that Lyme disease was primarily a problem of swollen joints, not a disease that affected the nervous system, the brain, the heart, and other organs.

Steere’s letter to Polly Murray on the nature of Lyme disease.

Other medical experts criticized his premature labeling of this disease as a “relatively minor type of arthritis,” including:

—Franz J. lngelfinger, MD, the editor of The New England Journal of Medicine, who rejected Steere’s discovery article, wrote, “Although reviewers and editors were impressed by the interest your studies have generated, you were unable to identify an etiologic agent and apparently actually saw yourself only 20 symptomatic patients.” [6]

—William E. Mast, MC and William, M. Burrows, MC, the Groton military physicians who published the first Connecticut Lyme case studies, wrote in a JAMA rebuttal letter: “On exchange of patients and information with Dr. Steere and the group at Yale investigating “Lyme arthritis,” it is the consensus that we are all dealing with the same process. It is apparent that the term “Lyme arthritis” is much too restrictive since there have been cases from the Connecticut and Rhode Island shores and the incidence is expected to be more widespread.” [7]

—Raymond Dattwyler, MD, Professor of Pathology, Microbiology and Immunology, Medicine, and Pediatrics at New York Medical College said, “It’s unfortunate that in the U.S., the rheumatologists studied Lyme disease first. Lyme disease is a multisystemic infectious disease that impacts many organs. But because the early work was done by rheumatologists, the prism through which we view the disease was artificially narrow, and impeded research for years.” [8]

Words from the grave

Polly wasn’t a trained epidemiologist, but she approached the problem like a true scientist—she wrote everything down so nothing would be missed. And as the people around her got sicker, she doubled down on her resolve to get help for these very sick people:

I firmly believe in the politics of numbers. One person, or even six in a family such as ours, does not have the power that was acquired by the ever-increasing number of people eventually involved. Proper diagnosis was further hampered by the fact that the patients from our area did not go to just one medical center, where, if we had, the high incidence of these strange symptoms might possibly have been picked up earlier. Instead, because of our geographic location, we, in fact, went to specialists in New Haven, Middletown, Hartford, and even New York and Boston. Perhaps it was the adversity that I encountered in the early pursuit for knowledge concerning our constant maladies that made me persist more than I would have otherwise.

Despite her efforts, it’s still difficult for patients to get diagnosed and treated, especially in the later stages of the disease. According to MyLymeData’s registry of 12,000-plus Lyme patients, about half had to see 5 or more clinicians over 3 or more years before receiving an accurate diagnosis. [9]

Little progress in 43 years

Forty-three years after its discovery, we still don’t have a reliable Lyme screening test, and about a quarter of patients treated with the standard dose of antibiotics go on to suffer from ongoing symptoms. [10] The CDC estimates that there are almost 500,000 new cases a year and growing. [11] And an analysis of NIH Lyme-related research grants from 2013-2021 revealed that less than 1% was spent on looking for better treatment protocols. [12]

Regrettably, Polly’s perspective on what went wrong in the 1970s still holds true today. The medical system still hasn’t figure out how to deal with complex chronic diseases like long COVID, Lyme disease, or ME/CFS (chronic fatigue).

It is only in looking back on the discovery of this disease that I see that it fit into the classic pattern of denial and resistance to the unknown until it reached a point where it could no longer be ignored. Most doctors are overloaded in just trying to alleviate known problems, thereby making it difficult for anyone with a new set of symptoms to compete for the clinician’s time. It is easier to decide that the patient is hypochondriacal than to deal with the unknown. Furthermore, in this age of specialization, the total picture of the patient’s health is often lost when the patient goes from specialist to specialist to be treated for individual symptoms.

This history shows that the definition of Lyme disease went off track early on and then diverged further from reality under the influence of vaccine developers and medical insurers who found it more profitable to deny the chronic, relapsing manifestations of the disease. The legacy of Lyme disease, which continues to spread unabated, will continue to haunt us unless we address this problem in a more honest and effective way.

Good Housekeeping, March 1977. [13]

Kris Newby is an award-winning medical science writer and the senior producer of the Lyme disease documentary UNDER OUR SKIN. Her book BITTEN: The Secret History of Lyme Disease and Biological Weapons won three international book awards for journalism and narrative nonfiction. Previously, Newby worked for Stanford Medical School, Apple, and other Silicon Valley companies.

This article is republished by permission from The BITTEN FILES on Substack, July 12, 2024. Learn more here.

References

1.        Petersen LR, et al. “Epidemiological and clinical features of 1,149 persons with Lyme disease identified by laboratory-based surveillance in Connecticut.” Yale J Biol Med. 1989 May-Jun;62(3):253-62.

2.        Polly Luckett Murray Papers, Medical Historical Library, Harvey Cushing/John Hay Whitney Medical Library, Yale University.

3.        Photo courtesy of Polly’s son, David Murray.

4.        https://www.documentcloud.org/documents/24791517-1976-steere-lyme-definition-presentation

5.        Steere AC, et al. Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities. Arthritis Rheum. 1977 Jan-Feb;20(1):7-17.

6.        Stephen E. Malawista Papers, Archives at Yale. https://www.documentcloud.org/documents/24797919-1976-jama-rejects-steere-article

7.        Mast WE, Burrows WM. Erythema Chronicum Migrans and “Lyme Arthritis.” JAMA. 1976;236(21):2392. doi:10.1001/jama.1976.03270220014011 https://jamanetwork.com/journals/jama/article-abstract/349662

8.        Weintraub, Pamela, Cure Unknown, New York : St. Martin’s Press, 2008. (A must read if you want to understand Lyme disease history.)

9.        2019 MyLymeData Chart Book. https://www.lymedisease.org/mylymedata-lyme-disease-research-report/

10.      “Why Lyme disease treatment sometimes doesn’t work.” LymeDisease.org https://www.lymedisease.org/lyme-treatment-sometimes-fails

11.      CDC Lyme Disease Surveillance and Data. https://www.cdc.gov/lyme/data-research/facts-stats

12.      Kris Newby analysis of NIH RePORTER data: https://report.nih.gov/funding/categorical-spending#/

13.      “Mrs. Murray’s Mystery Disease,” Good Housekeeping, Mar. 1977, 80–86.

I had not heard this story of suffering before but it’s not surprising because Lyme is not a new disease.

Melinda