https://pubmed.ncbi.nlm.nih.gov/33789412/
PMID: 33789412
Free article
https://lymediseaseassociation.org/blogs/lda-guest-blogs/joseph-burrascano-md-guest-blog/
May Awareness LDA Guest Blogger
May 1, 2021
Joseph J. Burrascano Jr. MD is a physician who was an early innovator in the field of tick-borne diseases, having begun his clinical research in the mid-1980s in cooperation with several other key pioneers. In addition, he is well known for his educational presentations and for his monographs on diagnostic and treatment guidelines for Lyme and related tick-borne illnesses- a classic series that has been freely circulated around the world since 1989.
With over three decades of clinical experience and research in this field, he has appeared in and on virtually every form of media, has advised the CDC and NIH, testified before the U.S. Senate, an armed services joint subcommittee, and at various governor’s councils. A founding Board Member of ILADS, he also served as a Director of the ILADS Educational Foundation.
A graduate of the NYU School of Medicine with a specialty in Internal Medicine, Dr. Burrascano left clinical practice in 2006 to enter the biotech space. However, he continues to be active in educating practitioners and the public on issues related to tick-borne diseases. He is an active writer and ghost writer and has authored or edited articles (both lay and peer-reviewed), book chapters, whole textbooks, web page content, public relations releases, book reviews and more. In addition, he serves on the editorial review board for several medical journals.
He currently works full time as a project analyst and manager for a private biotech company, helping to bring advanced technologies and treatments out of the lab and into general use. In addition, he is a clinical advisor for a specialty diagnostic lab, and his lifelong interest in nutrition has resulted in his ongoing consultative work with various nutritional supplement suppliers.
I was thinking about how it was, over 35 years ago, when I first became aware of Lyme disease and began managing patients with this. One of the biggest problems then was confirming the diagnosis. My Lyme-aware colleagues and I were familiar with the clinical presentation but too many times the Lyme tests, primitive as they were, were non-reactive. Thus “sero-negative Lyme.”
We learned over time that ticks were transmitting pathogens other than B. burgdorferi– first was Babesia, then a Bartonella-like organism came into play. When these were the primary cause of the illness, Lyme tests were negative and Lyme treatments did not help the patients. This explained a lot. If someone had Babesia they would not be expected to have a positive Lyme test. As time passed, more potentially co-infecting bacteria, protozoans and others were found. Perhaps all this seronegativity was appropriate after all.
Fast forward to today- thanks to a quiet revolution in testing that has uncovered previously unknown and/or unexpected tick-borne diseases, many more patients are able to get laboratory confirmation of their clinical diagnoses. Not only is it comforting to practitioner and patient alike to have a supportive lab test, it is also more important than ever to assure insurance coverage for treatments, and for practitioners who may be under constant scrutiny by their medical boards.
With Lyme, using advanced testing methods, it has been shown that many patients who were seronegative on standard testing were found to have infection with species of Lyme Borrelia other than burgdorferi. They actually were infected with members of the Bbsl complex previously thought to not be in America! These species were unlikely to be detected by tests based upon the lab strain of B. burgdorferi, B31. Here, seronegativity was not because of poor test quality, but because of testing for the wrong species.
An even more surprising finding is that many seronegative Lyme patients did not have Lyme Borrelia– they had tick-borne relapsing fever Borrelia! How is this possible? How could relapsing fever be confused with Lyme? After all, the textbooks describe TBRF as having an acute onset with high fever and severe chills and malaise, followed by a drenching sweat and then relative normalcy until a relapse of similar symptoms occurs five or so days later, that then repeats. Clearly a distinctive presentation, but the problem is that in many patients, TBRF presents as “seronegative Lyme” and not as classic relapsing fever. Apparently the TBRF spirochetes did not read the textbook! It seems this “classic” presentation of TBRF occurs relatively rarely, similarly to the rarity of Bell’s Palsy in “classic Lyme”. So again, seronegativity was due to testing for the wrong species.
Bartonella is notoriously difficult to document with blood testing, and now with the possibility that greater than thirty species could be pathogenic to humans, better testing is really important. The key here is the ability to test for these multiple species. Nowadays we have multispecies western blots (soon to be replaced with immunoblots), multispecies PCRs and FISH tests.
Droplet digital technologies seem to be another advance. Finally- these “stealth” infections are no longer so stealth.
And what about Babesia? Same issue? Yup. Research has shown that several species of Babesia can and do infect humans, and the genus-level testing now available can uncover infections that previously went undetected.
This testing revolution has even extended to COVID-19, with immunoblots available that are not only more sensitive and specific than standard serologies, they can identify whether the immune reactivity is to a natural infection or due to vaccination. While this serological approach is a great advance, it only demonstrates B-cell response to the infection. Thankfully, we now have T-cell response testing and combining the two will give a much needed, more complete picture of a patient’s status.
Looking forward, the revolution will continue with the expanded application of immunoblot technology to additional pathogens. Tests that detect the pathogen’s RNA, which is only present in an active, ongoing infection, are expanding. Currently the FISH test does this, and other RNA-based detection methods are being developed. Along the same lines, looking for the presence of bacteriophages may prove to be a useful way to detect disease activity.
It is very exciting to see that skin biopsies are coming of age thanks to recent advances. The full spectrum of nerve damage seen in tick-borne illnesses will soon be able to be documented- not only damage to small cutaneous fibers and the pre-ganglionic innervation of sweat glands, but even demyelination can be seen! These direct tests that show what we have been postulating but could not prove represent a major advance. And these same biopsies hold the promise to be a highly efficient way to conclusively show infection with Bartonella species.
For decades we had to struggle with little more than clinical diagnoses- we knew our patients were ill but we could not prove it and care oftentimes could not be given. Finally, testing science is catching up with us. It’s about time!
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For more:
For Lyme Awareness resources.
https://www.belmontlawreview.org/articles/volume-8-issue-1-2020/
VOLUME 8, ISSUE 1: 2020
Creighton R. Meland, Jr.
For the excellently written paper for the Belmont Law Review, on the state of affairs with Lyme disease, please see this pdf: https://cpb-us-w2.wpmucdn.com/blogs.belmont.edu/dist/8/25/files/2020/11/Meland_95-163.pdf
Table of Contents:
INTRODUCTION 96
I. WHAT IS LYME DISEASE AND WHY IS IT MEDICALLY CONTROVERSIAL? 97
A. What is Lyme Disease? 97
B. Lyme Disease Detection and Diagnosis 101
C. Lyme Disease Treatment Regimens 104
1. IDSA v. ILADS 104
2. Coinfections and their Effect on Treatment 106
D. Lyme Disease is not a Research Priority 107
II. LYME DISEASE LEGAL ISSUES 108
A. IDSA and CDC Set Treatment Standards 108
1. Effects on Quality and Availability of Care 108
2. Antitrust Implications 112
B. State Lyme Disease Legislation 122
1. Health Insurance Coverage Mandates 122
2. Professional Standards 125
3. Lyme Testing Disclosures 127
4. Safe Harbors 130
5. Awareness, Prevention, and Government Support 133
**J.D. University of Michigan; B.S. Economics, Major in Finance, Wharton School, Undergraduate Division, University of Pennsylvania.**
I am grateful to Belmont Law Review for the opportunity to critique laws designed to redress health care problems presented by Lyme disease. Despite a pervasive presence and severe symptoms, Lyme disease is widely misunderstood by the medical community and too often goes untreated or improperly treated. While we await advances in medical science, the law can help those who suffer. I recognize and thank the International Lyme and Associated Diseases Society and its many contributors, who have deepened my understanding of medical problems associated with Lyme disease. These insights have influenced positively the form of the work I now submit.
https://danielcameronmd.com/lyme-disease-cause-chronic-illnesses/
As the number of individuals with chronic illnesses continues to rise, clinicians and patients are looking for reversible causes to chronic symptoms that are often debilitating to patients. Reversible causes have included dementia, [1] coma, [2] complex arrhythmia, [3] and autoimmune encephalitis. [4]
Could Lyme disease be a reversible cause of other chronic illnesses in some patients? Having a high index of suspicion will prevent missing the diagnosis.
Following are dozens of published papers, described in an Inside Lyme Blog series, which features cases in which Lyme disease was a reversible cause of other chronic medical conditions. [8]
80-year-old with Lyme encephalopathy instead of dementia
Chronic post-concussion syndrome symptoms due to Lyme disease
POTS patients with brain fog have neurocognitive deficits
When it looks like a brain tumor, but it is Lyme disease
Untreated Lyme disease triggers a stroke in 9-year-old boy
Lyme podcast: man with Lyme disease and stroke
Child with Lyme disease presenting as pseudotumor cerebri
Chronic inflammatory demyelinating polyneuropathy (CIDP) case resolved with antibiotics
Lyme meningitis, manifesting as parkinsonism, is fully reversed with ceftriaxone
Seizures and altered mental status after a tick bite
Dementia and normal pressure Hydrocephalus
Cognitive issues following a stroke due to Lyme disease
Stroke as a manifestation of Lyme disease
Lyme disease causes ‘false brain tumor’ in young child
Broad range of presentations for Lyme carditis cases
Lyme carditis presenting as atrial fibrillation treated successfully
First report of Lyme disease causing mitral valve endocarditis
Lyme endocarditis in 68-year-old avid outdoorsman
Another cardiac manifestation of Lyme myocarditis
When Lyme disease mimics a heart attack
Physician-turned-patient becomes Lyme advocate – required a heart transplant
POTS: an autonomic disorder in Lyme disease patients
Subacute transverse myelitis caused by Borrelia infection
Femoral neuropathy as a neurologic symptom of Lyme disease
Autonomic dysfunction, small fiber neuropathy and Lyme disease
Acute transverse myelitis in a 25-year-old man with Lyme disease
Lyme disease is associated with various sleep disorders
16-year-old boy with Lyme disease presenting as depression
Don’ t confuse somatic symptoms with depression in early Lyme disease
Oppositional behavior in children with Lyme disease
Can Lyme disease trigger obsessive compulsive symptoms?
Depression common in Lyme disease patients
Suicidal behaviors in patients with Lyme and associated diseases
7-year-old girl with Lyme disease presenting as attention deficit disorder
Treatment options for an anxious, suicidal patient with a history of Lyme disease
Subacute Parkinsonism as a complication of Lyme disease
Study finds hearing loss and tinnitus common in patients with tick-borne diseases
Lyme disease patient with permanent tinnitus and hearing loss
Lyme podcast: Sjögren’s syndrome secondary to Lyme disease
Can Lyme disease trigger an autoimmune disease? – Adult-onset Still’s disease (AOSD)
Lyme disease mimics autoimmune disorder in elderly woman – dermatomyositis
Could Lyme disease be another infection associated with the onset of Guillain-Barre syndrome?
PANDAS and Lyme disease in a 7-year-old child
6-year-old girl with a rare cutaneous presentation of Lyme disease – areolar lymphocytomainvolving her breast
Lyme disease mimics cellulitis skin infection
Lyme disease misdiagnosed as shingles in 62-year-old man
Study looks at uveitis due to Lyme disease
69-year-old man with Lyme disease and double vision
Visual changes due to Lyme disease
Growing list of eye problems in Lyme disease
Lyme disease causes vision loss in 46-year-old woman
Can Lyme disease trigger sarcoidosis?
Lyme disease mimics prosthetic joint infection following knee replacement
Neurologic Lyme disease presenting as abdominal pain in 71-year-old patient
Lyme disease manifests as abdominal pain in young child
Doctors recognize Lyme disease in a patient with kidney disease
Kidney failure and disseminated rashes associated with Lyme disease
Conclusion: Substantial variability exists in the presenting features and clinical course of patients with Lyme disease. A diagnosis depends upon a thorough clinical evaluation, physical and neurologic examinations, along with laboratory testing. An accurate diagnosis and proper treatment can improve the outcome of patients with reversible causes of chronic symptoms.
https://www.lymedisease.org/neuropsych-lyme-jane-marke/
By Dr. Jane Marke
The mental health problems associated with Lyme disease are varied and often call for a variety of specialists to help the patient: child psychiatrists, adult psychiatrists, and family therapists or social workers.
Parents especially must deal with a variety of issues: the symptoms themselves that children present, the stress of and between family members, parents and relationships, as well as getting and coordinating treatment and education for their children.
Children can present with myriad symptoms including attention deficit disorder, anxiety, autism, depression, eating disorders, insomnia, learning disorders, obsessive compulsive disorder, opposition disorder, PANS/PANDAS.
Any change in personality without obvious cause should raise suspicion. Children often present with “school refusal” because they are feeling unwell in a way they cannot express in words.
This could be due to sensitivity to light, sounds, or sensory integration. The activity of a classroom filled with children, social stimulation, and tasks to be accomplished maybe experienced as overwhelming, even bordering on painful.
The child may have changes in mood that approaches bipolar disorder seen in adults and be oppositional, angry, and difficult to manage.
Parenting these children is an unbelievable stress. They require a pediatrician who will treat the Lyme, a psychiatrist who understands it, and frequently, a social worker or psychologist who can help navigate the school situations and provide support to the family. Sometimes the parents find themselves at odds and end up in marital therapy.
Adults are a different story. Young adults dealing with college and post-college years miss key experiences they were anticipating to move into adulthood and lose out on their sense of entering adulthood.
Hypersensitivity to light, sound, and smells can be profound, and the hypersensitivity may produce illusions or a sense of hallucination. Sometimes they are hospitalized in psychiatric hospitals with other very ill patients and the experience can be traumatizing.
Older adults may develop major psychiatric symptoms which interfere with their ability to work or care for family.
All these situations and stimuli can present major psychological issues for the affected patient. They may have personality changes. Their preoccupation with symptoms may make them seem self-centered or un-empathic with family or friends. They experience loss of sense of value, purpose, meaning and worth.
Relationship problems arise from feeling like a burden or being perceived as a burden by others and there is guilt and shame over psychiatric symptoms. It’s a lonely illness.
Project Lyme recently sponsored a webinar for the public on the mental health challenges of Lyme patients. Dr Rosalie Greenberg addressed the issues of children, I addressed the issues of adults, and social worker Audrey Amir addressed emotional and social issues.
You can watch the video here:
Click here to watch on YouTube.
Jane Marke, MD, practices integrative psychiatry and psychotherapy in New York City.
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For more:
Madison Area Lyme Support Group 