Archive for the ‘Lyme’ Category

When Lyme Changes Your Brain

https://www.lymedisease.org/lyme-related-brain-fog-is-real/

Advanced imaging shows Lyme-related brain fog is real

By Nancy Dougherty
Johns Hopkins Medicine Lyme Disease Research Center

There are approximately 476,000 people diagnosed with Lyme disease annually in the US. Of these, an estimated 10-20% suffer from impairing symptoms well beyond the acute phase of infection.

Persistent symptoms include severe fatigue, pain, and cognitive problems. Vexingly, these symptoms can be difficult to validate using current diagnostic tests.

Patients are often told by their health practitioners: “your tests are normal, it’s in your head” (aka psychosomatic).

Researchers have discovered, however, that by using more advanced imaging modalities, brain changes can be objectively detected in Lyme disease patients.

For example, clinical researchers at Johns Hopkins University School of Medicine have used novel PET imaging, functional MRI (fMRI), and diffusion tensor imaging (DTI) to identify inflammatory, functional, and structural abnormalities in the brains of Lyme disease patients as compared to healthy controls.

Their findings indicate that Lyme-disease-associated brain alterations are biologic and measurable, not psychosomatic. These discoveries are significant but not yet well known by the physician community or broadly available to clinicians.

What does “brain fog” mean?

Brain fog is a term used to describe difficulties with cognitive functions such as working memory, focusing, concentrating, planning, organizing, word recall, processing speed, and mental fatigue.

Working memory enables one to do tasks quickly or easily solve a problem without looking up information. This includes quickly learning a new computer program or using names or numbers for a routine task.

Mental fatigue is akin to how one feels after taking a long test that requires remembering detailed information or doing a complicated mental task when short on sleep.

What are the limitations of current clinical tests for Lyme-associated brain fog?

Brain fog is commonly experienced by Lyme disease patients but difficult to detect because cognitive deficits can be too subtle for standard diagnostic tests to uncover.

Usual blood tests appear normal in Lyme encephalopathy or brain fog (CBC; CMP: kidney, liver, glucose, thyroid; ESR, CRP).

Serum blood testing for 2-tier IgG Borrelia burgdorferi antibody seropositivity may be negative in patients, such as those with past antibiotic treatment.

Clinically available MRI imaging is usually normal or shows nonspecific changes. Cerebrospinal fluid examination findings are usually normal as well. In some cases, the CSF fluid may show evidence of a mild form of encephalomyelitis, but this is rare.

Formal cognitive testing with a neuropsychologist to characterize the type and severity of cognitive problems can be a more helpful approach. Working memory and processing speed have been shown to be impacted in Lyme disease patients using standardized neuropsychological measures.[i] However, patient-reported cognitive complaints are subjective, and objective measures of cognitive decline are sought after by patients and clinicians.

What does more advanced neuroimaging reveal?

Non-standard research-grade neuroimaging technologies have discovered marked biologic abnormalities in patients with Lyme disease as compared to healthy controls.

A Columbia University brain PET imaging study (2009) found hypometabolism in Lyme-disease-associated encephalopathy.[ii]

A Johns Hopkins University School of Medicine brain PET imaging study (2018) revealed increased inflammation and glial activation in patients with Lyme-disease-associated persistent symptoms.[iii]

A 2022 Johns Hopkins University School of Medicine neuroimaging study utilized fMRI and DTI brain scans in conjunction with each other. These scans identified striking functional abnormalities as well as distinct structural changes in the white brain matter of Lyme disease patients.[iv]

What is the significance of these neuroimaging findings?

John Aucott, MD, Director of the Johns Hopkins Medicine Lyme Disease Research Center and Associate Professor of Medicine at Johns Hopkins University School of Medicine, explains, “The cause of Lyme-disease-associated persistent symptoms typically cannot be identified with regular MRIs, CT scans, or blood tests. However, in a research setting, more sophisticated PET, fMRI, and DTI imaging approaches have found significant objective abnormalities in the brains of Lyme disease patients compared with healthy controls.”

Cherie Marvel, PhD, lead author of the fMRI/DTI study and Associate Professor, Departments of Neurology & Psychiatry at Johns Hopkins University School of Medicine, describes fMRI as “a quantitative ‘brain stress test’ that measures brain function during cognitive tasks.”

Dr. Marvel explains that “the brain scans indicate Lyme disease patients’ brains work harder than normal and unexpectedly by activating white matter in the frontal lobe to try to maintain normal function.”

DTI, a measure of structural brain integrity, confirms abnormalities in the same white matter regions as observed in the fMRI scans.

These novel neuroimaging results provide new objective validation of a biologic basis for the brain fog reported by Lyme disease patients, including working memory impairment and slower processing speed.

The findings indicate Lyme-disease-associated brain fog is real and likely due to ongoing neuroinflammation driving brain dysfunction. More research is needed to better understand the diagnostic and therapeutic implications of these notable discoveries and to bring new insights and more advanced tools into the clinic to help patients.

Big picture

The Lyme-disease-associated advanced neuroimaging brain findings may be relevant to other infection-associated chronic illnesses where neuroinflammation is also significant, including Long COVID and ME/CFS. On June 29-30, 2023, a National Academies of Sciences, Engineering and Medicine workshop will “examine common biological and clinical factors associated with infection-associated chronic illnesses.” Infection-associated brain fog is one topic this workshop can hopefully shine additional light on to help accelerate knowledge and solutions for patients.

Nancy Dougherty is an Education and Communications Consultant for Johns Hopkins Medicine Lyme Disease Research Center. Follow her on Twitter: @NancyNDougherty.

References

[i] Touradji P, Aucott JN, Yang T, Rebman AW, Bechtold KT. Cognitive Decline in Post-treatment Lyme Disease Syndrome. Arch Clin Neuropsychol. 2019 Jun 1;34(4):455-465. doi: 10.1093/arclin/acy051. PMID: 29945190. https://pubmed.ncbi.nlm.nih.gov/29945190/

[ii] Fallon BA, Lipkin RB, Corbera KM, Yu S, Nobler MS, Keilp JG, Petkova E, Lisanby SH, Moeller JR, Slavov I, Van Heertum R, Mensh BD, Sackeim HA. Regional cerebral blood flow and metabolic rate in persistent Lyme encephalopathy. Arch Gen Psychiatry. 2009 May;66(5):554-63. doi: 10.1001/archgenpsychiatry.2009.29. PMID: 19414715. https://pubmed.ncbi.nlm.nih.gov/19414715/

[iii] Coughlin JM, Yang T, Rebman AW, Bechtold KT, Du Y, Mathews WB, Lesniak WG, Mihm EA, Frey SM, Marshall ES, Rosenthal HB, Reekie TA, Kassiou M, Dannals RF, Soloski MJ, Aucott JN, Pomper MG. Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET. J Neuroinflammation. 2018 Dec 19;15(1):346. doi: 10.1186/s12974-018-1381-4. PMID: 30567544; PMCID: PMC6299943. https://pubmed.ncbi.nlm.nih.gov/30567544/

[iv] Marvel CL, Alm KH, Bhattacharya D, Rebman AW, Bakker A, Morgan OP, et al. (2022) A multimodal neuroimaging study of brain abnormalities and clinical correlates in post treatment Lyme disease. PLoS ONE 17(10): e0271425. https://doi.org/10.1371/journal.pone.0271425

Caption for featured photo: DTI brain images from a 2022 Johns Hopkins University School of Medicine study show white matter changes associated with post treatment Lyme disease.

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**Comment**

What’s important is what will they do with this information and what will they attribute the brain changes to. For instance, currently, and for the entire history of Lyme/MSIDS, these issues have been blamed upon PTLDS – an autoimmune/inflammatory type of condition that will be treated with things like steroids when the very real underlying problem could be persistent infection(s).  This has become highly politicalized, causing polarity in research and medicine.

Unfortunately, this article, like so many others before it emphasizes and pushes the accepted narrative about the consequences or supposed failure of prolonged antibiotics for Lyme/MSIDS.  Everyone understands that prolonged antibiotic use is not without risks; however, nobody seems to care when it’s for acne, salmonella, endocarditis, sickle cell, or rheumatic fever.  Further, this report states there is significant information that supports the safety of prolonged antibiotic use regarding penicillin and its derivatives.

Again it’s about benefit vs risk.

When you are faced with death or a life of misery, all of a sudden the risk of prolonged antibiotics falls on the priority list.  Further, many, including myself and my husband have achieved our health back after this therapy.

Of course antibiotics aren’t the only tool in the tool kit needed for treating Lyme/MSIDS.  It truly is a complicated illness and one must learn all they can about diet, supplements, herbs, immune modulators, etc., but that doesn’t mean antimicrobials don’t have a very important role.  

Lastly, there are good reasons why extended antibiotics haven’t appeared successful in many NIH funded studies.  This is because:

  • typically a monotherapy is utilized, which frankly often isn’t enough with Lyme/MSIDS, plus there’s the concern of antibiotic resistance with this myopic approach
  • often the wrong antibiotic is used
  • often the wrong dosage of antibiotic is used
  • often, individual differences are not taken into account for example, symptoms must be monitored carefully and antibiotics changed when patients hit a plateau.  This approach doesn’t fit into the current research paradigm.
  • many other research design flaws such as only accepting those who test positive on 2-tiered CDC testing which is known to miss more than 70% of all cases, as well accepting patients that have the EM rash which is highly variable
For a fantastic overview on treatment nuances listen to Dr. Burrascano on the history of Lyme which I highlight here. 

In brief:

  • Treat ALL forms of Bb
  • Treat coinfections
  • Treat long enough (Bb is slow-growing and persistent)
  • Make sure blood levels of antibiotics are high enough as people vary.  He discusses amoxicillin and how they found that increasing the dosage to 1,000mg 3X/day and adding probenecid to increase the antibiotic in the blood, people did even better.  He goes on to tell of an unpublished study with Stoneybook where there was a failure rate of 100% of patients taking 300mg of doxycycline a day for 21 days. Yet, how many people are given this exact treatment?
  • Cycle treatment.  This means, once you are symptom-free for 2-4 months, stop treatment.  If symptoms return, treat again.  Burrascano has found that it typically takes 3-4 Cycles before a person remains symptom-free.  The 3rd cycle often yields the worst herx in his experience.

https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/  In this astute editorial, Microbiologist Tom Greer states:

From the very beginning, treatment failures were seen in virtually every antibiotic study done. The longer the patient follow up, the higher the incidence of treatment failure. The medical community blamed early treatment failures on the older antibiotics erythromycin, tetracycline, and penicillin, and determined that these antibiotics were not very effective at curing Lyme disease. Ignored was the fact that the newer antibiotics were also consistently failing to prevent relapses of active infection. Since these early treatment studies, the concept that two weeks of antibiotic therapy is adequate treatment for Lyme disease has remained ingrained in the medical community’s collective consciousness. [The Long-Term Follow-up of Lyme Disease: A Population-Based Retrospective Cohort Study. Authors: Shadick NA; Phillips CB; Sangha O et al. Ann Intern Med 1999 Dec 21;131(12):919-26]

*Data presented by Dr. Nancy Shadick at an International Lyme Symposia showed that patients in the Nantucket Island study followed for up to 5.2 years after initial antibiotic treatment had ever-climbing relapse rates. Relapse rates in patients receiving two weeks of IV Rocephin (ceftriaxone) could expect a relapse rate to exceed 50% after five years.

There is a smart way to treat this, yet few are nuanced in this skill.  We desperately need post-mortem studies to determine what is keeping people ill.  We need current transmission studies.  We need doctor education on the polymicrobial aspect of this disease. And, we need the stigma & polarization to go away so insurance companies will cover Lyme/MSIDS medical expenses, patients will be believed and supported and the bullying will end.

Category:

Lyme, Psychological Aspects, research

Still’s Disease After COVID Shot: Yet More Confusion For Vaxxed Lyme/MSIDS Patients

https://petermcculloughmd.substack.com/p/steroid-responsive-stills-disease

Steroid Responsive Still’s Disease after COVID-19 Vaccination

Febrile Syndrome Includes Sore Throat, Joint Pain, and Myopericarditis

Peter A. McCullough, MD, MPH™

Approximately a third of COVID-19 vaccine recipients develop transient fever. It is important to recognize that a constellation of symptoms in addition to fever should prompt recognition of Still’s Disease. Adult onset Still disease, also known as systemic onset juvenile idiopathic arthritis, is a systemic inflammatory disorder characterized by inflammatory polyarthritis, daily fever, and a transient salmon-pink maculopapular rash. A serum ferritin level of more than 1000 ng/ml is common in this condition.

Sharabi and colleagues described two cases of adult onset still disease after the Pfizer mRNA COVID-19 vaccine. Both cases were serious, involved myopericarditis, and required hospitalization and and treatment with pulsed corticosteroids.  (See link for article)

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**Comment**

I must mention that I had the maculopapular rash when I had COVID.  It appears that this rash is associated with COVID infection and in some cases burns or in my case itches to high heaven.  I write about the successful treatment I used here in the comment section.

I am a huge proponent for ivermectin as it has worked miraculously 3 different times for us but has been tyrannically censored.  Within a day, symptoms abated.  The first time I used it I waited too long (day 14?) but it still worked.  It’s been shown to work for every stage of COVID, but the addition of IV C and IV ozone are sure to assist.  We already take vitamin D and melatonin – also shown to help.

A lot of the above should sound familiar to most Lyme/MSIDS patients. At one point I had nearly every symptom mentioned.  The catch, of course, is for those who got the injections on top of being ill with a misunderstood, complex illness, and not being able to parse out what is causing what.  This is hard on a good day, but nearly impossible when it includes an experimental, fast-tracked gene therapy injections that nobody knows what’s truly in them, has been foisted upon an unsuspecting public that has caused more reports of adverse events and death than any other vaccine in the history of VAERS.

Category:

Lyme, vaccines, Viruses

Lyme Carditis Presents Without Typical Lyme Disease Symptoms

https://danielcameronmd.com/lyme-carditis-presents-without-typical-lyme-disease-symptoms/

LYME CARDITIS PRESENTS WITHOUT TYPICAL LYME DISEASE SYMPTOMS

By Dr. Daniel Cameron

lyme-carditis

A case report entitled “An Atypical Case of Lyme Disease Presenting With Lyme Carditis,” by Najam et al. demonstrates the importance of considering Lyme disease in patients who present with signs and symptoms of AV block and no other manifestations of Lyme disease. [1]

The authors describe a 70-year-old male who presented to the hospital without any typical Lyme disease symptoms, but exhibited generalized symptoms of progressive orthopnea and dyspnea on exertion.

The man had a medical history of hypertension and calcific aortic stenosis. His lab results were “significant for an increased erythrocyte sedimentation rate of 136, white blood cell count of 16.6, hemoglobin of 9.3, creatinine of 2.6, and normal liver enzymes. Troponins were negative but his brain natriuretic peptide was elevated at 877. His admitting EKG was significant for bradycardia with a heart rate in the mid-40s and a first-degree AV block.”

“We report a case of a 70-year-old male with Lyme disease presenting with a second-degree, Mobitz type 1 AV block.”

Clinicians considered his symptoms possibly due to anemia, progressive kidney disease, possible congestive heart failure exacerbation, worsening aortic stenosis, and/or pneumonia.

“Due to the prevalence of Lyme disease in the northeast and the patient’s symptomatology, a tick panel was ordered which came back positive for Lyme,” the authors wrote.

The patients were treated with IV Rocephin and oral doxycycline. He had a complete resolution of symptoms with a normal sinus rhythm without AV block.

“This incidence shows the importance of having a Lyme disease diagnosis when regionally appropriate for patients who may present with no other signs or symptoms other than an AV block.”

The authors suggest, “In highly endemic areas such as the northeast and Midwest United States, early recognition and treatment of Lyme disease is important for the prevention of long-term complications of disseminated infection.”

Related Articles:

Pacemakers for Lyme carditis

Successful removal of pacemakers in patients with Lyme carditis

Podcast: 3 deaths associated with Lyme carditis

References:
  1. Najam U S, Sheikh A (March 08, 2023) An Atypical Case of Lyme Disease Presenting With Lyme Carditis. Cureus 15(3): e35907. doi:10.7759/cureus.35907

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**Comment**

Please know patients present “atypically” quite often and just because something is rarely reported, doesn’t mean something is rare.  Due to this deception, patients are kicked to the curb continually.

For more:

Category:

Heart Issues, Lyme, research

Methylene Blue for Lyme & Bartonella (Also COVID)

https://www.treatlyme.net/guide/methylene-blue-for-lyme-and-bartonella  Video Here

Methylene Blue for Lyme and Bartonella: The Ins and Outs

By Dr. Marty Ross

Methylene Blue for Lyme and Bartonella Persisters

The Ins and Outs of Methylene Blue

Methylene blue is a repurposed drug used to treat persister Lyme (Borrelia) and Bartonella. There is also lab evidence showing it treats growing Bartonella. It likely kills growing Lyme too. While methylene blue may treat growing germs, the main reason to use it in Lyme or Bartonella infectious is to treat persisters.

In this video article, Marty Ross, MD discusses the ins and outs, including risks factors, of using methylene blue. Below the video, you can find sample antibiotic protocols for Lyme and Bartonella that include methylene blue.

Notice-How to Use This Article

Be aware, most of the important information in this article is in the video in the top link

(See link for article and video)

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**Comment**

Methylene blue, like DMSO and ozone are more like therapeutic principles than drugs and work for many disease processes including COVID, yet mainstream medicine & media is remarkably silent because these safe, cheap, effective alternatives interfere with their conflicts of interest.  The same can be said for ivermectin and HCQ/zinc, as well as long-term antibiotics for Lyme/MSIDS sufferers who continue to have symptoms.

For more:

For more on Bartonella treatment:

For more on MB for COVID:

  • https://www.nature.com/articles/s41598-021-92481-9  MB displays broad-spectrum virucidal activity in the presence of UV light and inactivates various viruses in blood products prior to transfusions.  It’s validated for treating methemoglobinemia and malaria.  Our findings reveal that methylene blue displays virucidal preventive or therapeutic activity against influenza virus H1N1 and SARS-CoV-2 at low micromolar concentrations and in the absence of UV-activation. We also confirm that MB antiviral activity is based on several mechanisms of action as the extent of genomic RNA degradation is higher in presence of light and after long exposure. Our work supports the interest of testing methylene blue in clinical studies to confirm a preventive and/or therapeutic efficacy against both influenza virus H1N1 and SARS-CoV-2 infections.
  • https://biomedres.us/pdfs/BJSTR.MS.ID.006723.pdfSeven outpatients with confirmed cases of severe COVID-19 received oral MB (the reduced form: 1mg/kg T.I.D. for 2-days, followed by 1mg/kg B.I.D. for the next 12 days) along with standard care. Outpatients recovered completely.  Considering all properties of MB such as anti-viral, antibiotic, anticoagulant, immunomodulatory, antioxidants, anti-hypoxemia, and anti-respiratory; it could be applied as an adjunct therapy along with standard care protocols in the clinical management of COVID-19 outpatients. MB is a cheap and FDA-approved drug for methemoglobinemia.
  • https://www.news-medical.net/news/20220325/Study-finds-methylene-blue-is-a-low-micromolar-inhibitor-of-the-the-SARS-CoV-2-spike-protein-and-ACE2-interaction.aspx  Authors of this study revealed that MeBlu is a low‐micromolar inhibitor of the PPI that suppresses interaction between the S protein of SARS-CoV-2 and its cognate receptor ACE2. The dye was also found to be effective against the Delta variant and to suppress virus replication in Vero E6 cells. Scientists believe that MeBlu could be used as an inexpensive drug for the treatment of SARS-CoV-2 infection.
  • https://clinicaltrials.gov/ct2/show/NCT04933864  Since methylene blue can work as a photosensitizer, photodynamic therapy as an antiviral treatment has great potential in the treatment of COVID-19. (The study is ongoing so results are yet to be known)
  • https://pubmed.ncbi.nlm.nih.gov/34019535/  The addition of MB to the treatment protocols significantly improved SpO2 and respiratory distress in COVID-19 patients, which resulted in decreased hospital stay and mortality.
  • https://www.frontiersin.org/articles/10.3389/fphar.2020.600372/full  Screening of our organic dye-based library identified MeBlu as a low-micromolar inhibitor of the interaction between SARS-CoV-2 spike protein and its cognate receptor ACE2, a PPI that is the first critical step initiating the viral entry of this coronavirus. While MeBlu shows strong polypharmacology and might be a somewhat promiscuous PPI inhibitor, its ability to inhibit this PPI could contribute to the antiviral activity of MeBlu against SARS-CoV-2 even in the absence of light making this inexpensive and widely available drug potentially useful in the prevention and treatment of COVID-19 as an oral or inhaled medication.
  • https://www.sciencedirect.com/science/article/pii/S0753332221008064  Currently, the treatment of COVID-19 involves use of antiviral and anti-cytokine drugs. However, both the drugs have low efficacy because they cannot inhibit the production of free radicals and cytokines at the same time. Recently, some researchers have reported the use of methylene blue(MB) in COVID-19 management. MB has been used since a long time as a therapeutic agent, and has been approved by the US FDA for the treatment of other diseases. The additional advantage of MB is its low cost. MB is a safe drug when used in the dose of < 2 mg/kg. In this review, the applicability of MB in COVID-19 and its mechanistic aspects have been explored and compiled. The clinical studies have been explained in great detail. Thus, the potential of MB in the management of COVID-19 has been examined.  The results are satisfactory and provide a ray of hope in this direction. Thus, MB can be termed as a “rescue magic bullet” for COVID-19 treatment. However, for MB administration, meticulous consideration of the dosage is necessary to prevent any untoward effects. MB can be administered thrice orally at a dose of 2–3 mg/kg per day for 7–10 days in newly infected COVID-19 patients. However, this needs to be further studied, and finding the optimal dosage should be the objective of clinical study [43]. The use of MB in novel dosage forms like an anti-COVID mouthwash may also be beneficial [77].  **Warning** MB can interact with antidepressants (selective serotonin reuptake inhibitors and MAO inhibitors) to cause sever toxicity of serotonin.  It also has been found to interact with with dapsoneto form hydroxylamine, which oxidizes hemoglobin and may cause hemolysis [84]. Also, MB is contraindicated in patients with severe renal insufficiency. The use of MB in patients with G6PD deficiency can be detrimental, as it may cause severe hemolysis [53]. In such cases, the use of vitamin B12 and ascorbic acid has proven to be beneficial [85], [86], [87]. Additionally, concomitant use of NSAIDs may block the bradykinin activity pathways. Thus, NSAIDs may add benefit to MB therapy in COVID-19 [64], [88].

Category:

Bartonella, Lyme, Treatment

Lyme Carditis Podcast: Dr. Adrian Baranchuk

https://www.globallymealliance.org/blog/interview-with-leading-expert-on-lyme-carditis-dr.-adrian-baranchuk

GLA Podcast: Interview With Leading Expert on Lyme Carditis, Dr. Adrian Baranchuk

by Admin at Global Lyme Alliance on March 29, 2023

<span id="hs_cos_wrapper_name" class="hs_cos_wrapper hs_cos_wrapper_meta_field hs_cos_wrapper_type_text" style="" data-hs-cos-general-type="meta_field" data-hs-cos-type="text" >GLA Podcast: Interview With Leading Expert on Lyme Carditis, Dr. Adrian Baranchuk</span>

Listen Here:

Read the transcript below

In this interview you’ll learn more about a complication of Lyme disease known as Lyme carditis.

Interview condensed for clarity and length

My name is Lindsy Swift, Director of Marketing and Communications at Global Lyme Alliance. And I am pleased to be speaking with Dr. Baranchuk today on a very important topic that needs more education and awareness. Welcome, Dr. Baranchuk.

Dr. Baranchuk is one of the world’s leading experts on Lyme carditis. He is a Professor of Medicine at Queen’s University in the Division of Cardiology in Ontario, Canada. Dr. Baranchuk is also editor-in-chief of the Journal of Electro Cardiology, International Society of Holter and Non-invasive Electrocardiology, and President-Elect of the Interamerican Society of Cardiology. Dr. Baranchuk has published more than 750 articles in well-recognized international journals, 67 book chapters, and has presented more than 260 abstracts around the world. So for the purpose of this interview today, Dr. Baranchuk, let’s start off with a review of Lyme carditis. An easy question:

What is Lyme Carditis?

Dr. Adrian Baranchuk:

Thank you very much, Ms. Swift. As I said, it’s a pleasure to have the opportunity to chat about Lyme carditis with you today. So basically, most of our audience is familiarized with Lyme disease. So you got a tick bite, all of the sudden there is the dermatological manifestation. Sometimes it is the classic, we call it erythema migrans, which is that target lesion. But we know now that dermatological manifestation can vary and be something less common. And then the patient usually develops fever and what we call constitutional symptoms, which are those specific symptoms of not feeling well, feeling extremely weak, sometimes joint pain. And then this is what motivates going to the consult.

And when the skin manifestation is very obvious, then Lyme disease is first on the list. Or if these things happen in regions where doctors are aware that Lyme disease is very prevalent, we call it endemic regions, right? For example, my city, Kingston in Ontario, Canada, it’s a well-known zone for Lyme disease. So when patients come with these vague symptoms, somebody will suspect and send a serology to do the diagnosis. But your question specifically is how do we go from this skin manifestation to a heart lesion that we call Lyme carditis?

Well, it happens that the bacteria through the skin can enter the bloodstream, and then it’s distributed to many different parts in the body. And depending where the bacteria lands is where you are going to have your more classic manifestations. If it goes to the joints, is when you are going to have early disseminated Lyme arthritis. If it goes to your brain, you will have the early disseminated  neuroborreliosis. I know it’s a tough name, but when the bacteria lands in your brain, sometimes what it happens is that it lands in your heart.

1-s2.0-S0735109718394427-fx1

And then we call it Lyme carditis. Lyme carditis, as you said, occurs when the Lyme bacteria, the so-called Borrelia, affects your heart tissue. And for some reason, this bacteria has a special appetite for the electricity of your heart. It lands nine over ten times over your conduction system, which helps the heart contracting. And what it does is that it can slow down those contractions sometimes to the point that the heart stop beating. And if you are not resuscitated, this could be fatal. The other 10% of the time, it affects the muscle and the tissue that covers the heart. And we call that myopericarditis.

“…we should do ECGs to every single individual where you suspect or confirm Lyme disease…”

So, how often this happens, if you go to the literature, and I want your audience to pay attention to because this is something that is coming out in our research for the next two years. If you go to the literature, you will find that the heart is involved in Lyme disease 4 to 10% of the time. But Lindsy, this happens when the patient has symptoms.

So, during the description to the doctors, they say, and in addition of fever, this rash, my pain in the joints, I almost lost consciousness two times. Or I’m having chest pain or I’m having shortness of breath. And all of the sudden the doctor of decides to put one ECG and auscultation of your heart in the combo of your care for Lyme disease. And this is how we arrive to four to 10%, meaning this is not the real number. For the real number, we should do ECGs to every single individual where you suspect or confirm Lyme disease and put your stethoscope that machine we use to listen to your heart, in every single patient that you suspect or confirm Lyme disease. And my perception is that number could go much higher than 10%.

Dr. Adrian Baranchuk:

But you will say why? How do you know Adrian, that that is possible?

Dr. Adrian Baranchuk:

Two reasons. One reason is that we have seen cases where patients are completely asymptomatic, they don’t feel anything on their heart, but the doctor was wise enough to include one ECG and we see manifestations of Lyme carditis there.

Dr. Adrian Baranchuk:

And the second is that the group in Philadelphia basically looking at young kids with Lyme disease, they decided to do this systematic search. And you know what, Lindsy? The prevalence of heart complications increased to 27%.

Lindsy Swift:

That’s scary.

Dr. Adrian Baranchuk:

So, what we want is to run studies on every single current study that is being done in the world about Lyme disease to include two simple cheap things. A $1 ECG, and a half of a dollar auscultation of the heart. And you may say, well, interim, but if they are diagnosed with Lyme disease, they are going to be treated so that may treat all Lyme disease and the heart, true. However, the type of antibiotic that you use, the administration way for the antibiotic to reach the patient, and the duration of the antibiotic treatment differs if you only have Lyme disease or if you have a Lyme carditis.

Lindsy Swift:

Right. So, this should be something that doctors should be doing when they suspect Lyme disease every time, is what you’re saying?

Dr. Adrian Baranchuk:

Every time. But for me, Lindsy, to say it with the same degree of confidence that you have said that, and I know I’m going to remove my clinical hat to put on my research hat, is I need research to prove that your observation, my observation, and the observation of plenty of clinicians and investigators around the world is true so we can systematically include the 12-lead ECG, I insist. Five minutes to obtain, $1, highly reproducible, easy to be transmitted by phone. So I can’t foresee family doctors working in remote areas where Lyme disease could be prevalent doing an ECG in their office and transmitted this ECG to a colleague of their confidence saying, I just got this ECG. Can you confirm if it’s normal or not? Because if it is abnormal, the patient may need to be transferred from where the patient is located to a center that can do cardiac monitoring.

Dr. Adrian Baranchuk:

So, I would love to demonstrate this. When you interview me in, let’s say 2025, again, I can tell you, do you remember that conversation, Lindsy? We were right.

Lindsy Swift:

Right.

Dr. Adrian Baranchuk:

Because now we increase the prevalence of Lyme carditis from 10% to, I don’t know, 22, 25%.

Lindsy Swift:

Are there any plans in your research or anyone you know that’s doing this research out there that’s going to start doing this so that we have those numbers?

Dr. Adrian Baranchuk:

So first, my recognition to Dr. Beech, she was one if, I can’t recall if it was the lead author, but she’s one of the authors down in, I say down because I am in Canada, a little bit higher than that. By the way, let me brag a little bit because a book is coming called Lyme Carditis from A to Z, and it’s going to be printed by Springer, we hope, mid-2023.

Lindsy Swift:

Oh, great.

Dr. Adrian Baranchuk:

And this group has written the chapter on Lyme carditis in kids and young teenagers. A fantastic group, they work very hard and they were leading this idea. So, now we have conversations with different groups that have ongoing research to see if we can do a sub study. But at the same time, we are designing an observational project that could insert ECG as part of the mandatory test to do in every person diagnosed or highly suspected.

Remember that in some parts of the world, like in Canada, when we suspect Lyme disease, the serology takes five to seven days to return. So, if I truly suspect Lyme disease and there is an ECG with an abnormality, rather than sending the patient home on antibiotics for mouth, these patients should be admitted for IV antibiotics. And the question should be why? Because we have demonstrated more than five years ago that the progression of Lyme carditis can take from minutes to hours to days. So if I see a minor affection of the conduction system, this can be transformed into an emergency in a matter of hours. So if I’ve been lucky enough to have a minor thing, it corresponds to admit the patient, monitor the heart and start IV antibiotics until we receive the results of this serology.

…But we do know, and we have published, that unrecognized Lyme carditis can lead to death. And that can happen in a matter of minutes, hours or days. But please, to all the healthcare providers, if you are suspecting or diagnosing Lyme disease, make your effort to rule out whether the heart is being involved or not.

Does diagnosing Lyme in Lyme carditis differ in pediatric versus adult patients?

Dr. Adrian Baranchuk:

This is an excellent question. So, the older the patient, you may have conditions that produce some heart impact that are independent on whether you have Lyme disease or not. And I do receive, and I see patients from all around the world that they come to Kingston for a 30-minute interview. For me to say, it is impossible to determine today if the symptoms that you have have anything to do with your Lyme disease that you suffered three years ago or not. And I’m very sad because if you are 65, 70, 75, having cardiovascular symptoms is extremely common. It’s more common than COVID, right? Cardiovascular diseases are the main cause of symptoms in patients older than 65 years of age. So, in order for me to connect that to Lyme, sometimes it’s difficult.

It’s easier when I receive emails from centers saying a patient has come with this ECG and this and this and this symptom. Do you think that the patient could have Lyme carditis? And for that, in 2018, so five years ago, we have published the SILC score. SILC, S-I-L-C, which stands for Suspected Index in Lyme Carditis, and it uses an acronym invented by one of my fellows at the time, Dr. Juan, that is called COSTAR. The COSTAR is constitutional symptoms, outdoor activities for the O. Sex, male seems to be more prevalent than female, something that needs further investigation, but so far is a three to one relationship.

Dr. Adrian Baranchuk:

Recognition of a tick bite, not every person recognizes that. But if I have symptoms and abnormal ECG and a guy that says, “Oh, three weeks ago I removed, I went for a hike and I removed a tick from my leg or from my groin.” Well, here it is. Age, so this is a disease that affects younger individuals, so age less than 50. And R for rash. If you tell me I do, I did have a rash, now it dissipated. When you have more than seven points to 12 for a total of 12, the possibility of that condition being Lyme carditis is so high that even without the serology, you should be admitted, take blood for serology, start the antibiotic. Three to six is intermediate, so we advocate for patients to be admitted anyway and telling them we’re going to treat you until we get the serology back.

Now, zero to two points is unlikely. So unlikely to be Lyme disease that if you even don’t want to ask for serology, you’re okay with that, just proceed and put a pacemaker on the patient. So I am super happy to tell you that since we published this in 2019, several groups from different parts of the world have been using it with a very high sensitivity. For your audience, that means that it’s very useful. So it helps a lot when you have an abnormal ECG and some of the symptoms that we’ve been describing for you to run the SILC score, use the COSTAR acronym, and if you have an intermediate to high mark, then to be admitted in hospital, don’t allow those patients to go home because then it happens the catastrophes that we’ve been discussing earlier.

Treatment for Lyme Carditis

Lindsy Swift: So you mentioned earlier that the treatment for it is IV antibiotics. Is that correct?

Dr. Adrian Baranchuk:

That is correct. The proposed use of antibiotics is for 10 to 14 days of IV antibiotics depending on the response. It happened to us several cases that by day five, they recover conduction. If the patient require a temp perm, we remove it. By day seven, we put them on the treadmill. Treadmill, they exercise 150, 160 beats per minute. We send them home and we shift to doxycycline to complete a total of three weeks of antibiotic treatment.

Dr. Adrian Baranchuk:

So the IV is until you recover the conduction. Then we switch to doxy at the time of the discharge, and the patient completes a total of three weeks. So let’s say that you’ve been one week on IV, you will take two more weeks. If you’ve been two weeks on IV, you will take only one week.

Lindsy Swift:

Okay. And is that that done in the hospital, or can it be in outpatient?

Dr. Adrian Baranchuk:

Well, if you are on IV antibiotics is because the suspicion of Lyme carditis is quite high and/or you have the confirmation already. So we propose that during the IV antibiotic with or without a temp perm because remember that there’s people that tolerates being at 40 beats per minute very well, and they don’t need the temp perm, but they need to be observed. Why? Because the progression from that to no cardiac beats can be very quick. Even if you’re treated on antibiotics, it happens that some patients may not respond to it. So while the patient is receiving IV antibiotics, we aim for the patients to be at the hospital. There are experiences in the US where the home care provided was excellent, and patients have received the IV antibiotic with a temp perm at home. And at the time of improvement, both things were removed, IV to PO complete three weeks, and removal of the device in the hospital. Here in Canada, we do not advocate to have patients with a temp perm connected to their heart at home. We prefer to keep an eye on them at all times.

Lindsy Swift:

Do you treat pediatric cases the same as adult cases? Is the treatment the same?

Dr. Adrian Baranchuk:

You do. If the kid is able to tolerate a severe bradycardia, but he’s asymptomatic, IV antibiotics, monitoring.

Dr. Adrian Baranchuk:

If the kid has collapsed, presented fainting, and a total interruption of their heart electricity, they get a temp perm (pacemaker).

Dr. Adrian Baranchuk:

Because we don’t want that kid, maybe with a perm to be walking the corridor, we don’t want that. If I put a regular temporary pacemaker, the patient has to be in bed 24/7. So, this new strategy allows the person to walk while waiting to improve. So at the time of improvement, boom, home. I want to tell you very briefly an experience that we published very recently.

Dr. Adrian Baranchuk:

Two patients in different centers. They got Lyme carditis suspected, they got this serology, they started the IV antibiotics, but in the centers, they decided to implant a permanent pacemaker. So, the patients were contacted and say, your Lyme test came positive, please receive three weeks of antibiotic treatment. Both patients, one male, one female, have followed this indication. And for some reasons, they came to see me within one year of having that pacemaker implanted. So we did all the testing, demonstrated that they were not using their pacemakers because they received proper antibiotic treatment for myocarditis. We explained the risks associated with the extraction of the pacemaker. We proceeded to implant pacemakers. These were done in February and April 2022. After one year, they are doing their normal life with no pacemakers so.

Dr. Adrian Baranchuk:

This is something to keep reflecting. We need more education within the healthcare system to avoid in the first case, to implant the pacemaker, the permanent pacemaker if it is not absolutely necessary.

Lindsy Swift:

Is there anything else that we didn’t go over that you feel like we need to discuss in regards to Lyme carditis?

Dr. Adrian Baranchuk:

No. Maybe saying that I do believe that research in the arena of determining how prevalent Lyme carditis is in patients with confirmed or highly suspected Lyme disease is still lacking. And the second thing is we need more educational platforms, books, webinars, conversations like this to help healthcare providers to have Lyme disease very high in their differential when patients come with conduction disorders at a young age. And for any patient that comes with conduction disorders living in an endemic region. So in regions where life, this is quite prevalent. So from that perspective, I only can thank you for the opportunity to keep spreading the voice along the world.

Lindsy Swift:

Well, thank you for your great work, and we’ll be sure to link your published articles and important articles that people should read in regards to Lyme carditis at the bottom of this interview. Thank you again for your time, and it was a great conversation.

Dr. Adrian Baranchuk:

Thank you so much, Ms. Swift, and I am at your disposal at any time.

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Category:

Activism, Heart Issues, Lyme