Archive for the ‘Lyme’ Category

Growing Evidence of Lyme-Like Illness in Australia

Growing Evidence of an Emerging Tick-borne Disease That Causes a Lyme-like Illness For Many Australia Patients

Professor Noel. Campbell
Fellow Australasian College of Nutritional and Environmental Medicine

sub1281_Campbell (1)  372 page Paper Here

Executive Summary:  

Over the past three decades, thousands of Australian families have felt the impact of Lyme and  other tick-borne diseases (TBDs), with an estimated 10,000 individuals affected each year. Whether  it is a laborer who cannot continue his work because of debilitating joint pain, or a child who  misses school because of debilitating fatigue, pain and cognitive dysfunction, TBDs can have a  significant effect on the day to day lives of Australians. Since Lyme disease was first identified in  Australia in 1982, the disease has spread geographically, and in severity. It has been documented  that there has been an increase in tickborne diseases in Australia, including early and late forms, as  well as an increase in neurological cases.

The patient experience may be characterized by delays in diagnosis, confusion, frustration,  ongoing illness, with, in many cases poor outcomes, disability and a significant financial burden.  (Most recently, we have started to record deaths in Australia from tickborne diseases.)

Recognizing these facts, the Parliament of Australia has referred these matters to the Senate  Community Affairs References committee for enquiry and report. The Senate acknowledged the significant toll TBDs may exact on individuals, families, communities, and the state, noting that  TBDs pose a serious threat to the health and quality of life of many residents and visitors to  Australia.

The purpose of this inquiry should be to establish a Lyme and related tickborne diseases task force charged with exploring and identifying recommendations related to education and awareness, long term effects of misdiagnosis, prevention, and surveillance. The intent of the recommendations are  generally to improve Australia’s response to the tickborne disease burden.

This submission reflects the history of TBDs in Australia, and includes specific recommendations as well as implementation strategies, case studies, and resource needs. While the Senate Inquiry  will be the result of months of research and co-collaboration, it is clear that its report is merely the  beginning of a much-needed dialogue and structured planning process across the country.

The primary recommendations in this submission focus on increased and improve surveillance,  prevention of tick exposure strategies and tactics, as well as education and awareness for  healthcare practitioners(HCPs), patients, the general public and other stakeholders.

In contemplating each recommendation, the author carefully considered each of the countries key  stakeholders, including patients of all ages and their families, vulnerable populations, health care  providers, domestic animals, researchers, Government agencies, policy makers, schools and  community organisations, and the general public.

Key Themes: 

  1. Tickborne disease knowledge and research is evolving rapidly. It will be vital to encourage  critical research, to understand the scope and scale of Lyme and other TBDs in Australia,  and to develop options to improve the public health response and the community/ patient  outcomes.
  2. Different schools of thought exist among all stakeholders regarding Lyme. Ambiguities do  exist so it is important to promote a strong and academically rigourous pursuit of better  research to help clarify the best options for patients. We are encouraged to keep an open  mind, and to continue to explore the nature of these diseases and their health impacts.
  3. The most critical research gap is the lack of a gold standard test for Lyme and other  tickborne infections; a test that can quickly and accurately diagnose the disease, and prove  or disprove ongoing persistence. Research into bio- resonance for diagnosis and treatment of Lyme disease is producing encouraging results in Melbourne Australia.
  1. Without more research and surveillance, it will be difficult to stay ahead of this rapidly  evolving public health problem.
  2. The cost to Australia of doing nothing is considerable.
  3. Without targeted and significant funding, it is unlikely these recommendations can be  deployed in an effective and impactful way.
  4. Collaboration among the commonwealth’s diverse stakeholders Will help ensure programs  and strategies are innovative, effective, and measurable.  Too many Australians have suffered the consequences of Lyme and TBD’s, and without action,  thousands more remain at risk. This is important public health challenge affects all Australians  -every state has reported ticks infected with bacteria. And yet our children, our elderly, and our immunocompromised are most at risk and most vulnerable to their impact. Our actions now,  will significantly impact Australian youth’s risk and future potential.The author respectfully requests Swift action on the enclose recommendations by all state  leaders charged with ensuring the protection and well being of the Commonwealth’s residents.

_________________

For more:

Category:

Activism, Lyme, research, Testing, Ticks

Screenwriter Turns a Couple’s Courageous Lyme Fight into a Film Script

https://www.lymedisease.org/doherty-courageous-lyme-fight/

Screenwriter turns a couple’s courageous Lyme fight into a film script

By Steve Doherty

March 15, 2022

I was bitten on the neck by a tick in 1996, while camping in southern Mississippi. But I didn’t notice or remove the tick until five days after I returned home.

Looking back, I now recognize the subtle symptoms in the years following, such as hand rashes, crackling in my neck and mild cardiac arrhythmias.

In 2010, I became very ill. I spent a year and a half visiting physicians with no definitive diagnosis.

The symptoms had intensified to include numbness in my hands and feet, increased cardiac arrhythmias, consistent tinnitus and severe fatigue. Finally, an ILADS-affiliated doctor diagnosed me with Lyme in 2012.

I had worked as a respiratory therapy for 39 years, but could do so no longer due to my symptoms. I retired and began to delve into another love, screenwriting.

The Lasiter Family

Through a number of incredible circumstances, I became acquainted with Jessica and Lance Lasiter. Jessica is 30 years old and suffers highly debilitating symptoms. She became ill in 2010 and like me, experienced misdiagnosis and questioning of her symptoms.

At one point, doctors told her she had ALS. But eventually, she discovered she had neurological Lyme. Jessica is presently wheelchair-bound with very little use of her hands and much difficulty speaking.

Writing with one functional finger

Jessica and Lance are a courageous couple. Jessica, in her determination to help others, has even written the manuscript for a book based on her journey, using her one functional finger, on her cell phone. She transfers her work to her laptop, which she operates with a foot mouse.

Getting to know Jessica and Lance motivated me to write a screenplay based on their journey. Jessica, Lance and I met on a weekly basis for two years in order that I could learn their story, with its many ups and downs.

Their story was recently chronicled in The Clarion Herald, a local New Orleans newspaper. Here is a link to that article.

We now have a completed script, synopsis and log line for the project. We feel that it is a story that will truly encourage others, as well as inform many regarding the seriousness and horror of Lyme disease. The story is also one of Jessica’s courage and determination to help others in the face of severe adversity. The film project is currently titled, “The Cub & The Raider.”

We expect Jessica’s book manuscript, “We’ve Only Just Begun,” to be ready for publication soon.

During my work with Jessica and Lance, I have witnessed a devotion of a couple to each other that one rarely sees. They love each other unconditionally. This inspires me to use my situation and understanding of Lyme to put forth this story. By virtue of this I am determined, more than ever, in spite of the continued symptoms that I experience, to press on to completion. I hope it will help many people cope with their own Lyme disease challenges.

Steve Doherty lives in Metrairie, Louisiana. For more information regarding the book and film projects, he can be contacted at brownpelican08@aol.com.

Category:

Activism, Lyme

The Old Political “Does Borrelia Persist” Debate

https://www.lymedisease.org/tbdwg-persistence-horowitz/

TOUCHED BY LYME: Horowitz responds to the “old persistence debate”

March 7, 2022

Dr. Richard Horowitz

As noted in my most recent blog about the Tick-Borne Disease Working Group, a major sticking point has once more emerged between patient-aligned panelists and those aligned with the Infectious Diseases Society of America (IDSA).

The same issue raised its head during the 2018 and 2020 panels as well.

The impasse comes down to the question of whether Lyme bacteria can persist in the body after a short course of antibiotic therapy. The IDSA insists that the matter is settled: no persistence. The patient side points to scores of studies that show the opposite.

In a recent Facebook post, prominent Lyme-treating physician Dr. Richard Horowitz lists evidence regarding Borrelia’s ability to survive antibiotics. I recommend you save this answer in your files for future discussions with doctors and others.

Here’s what Dr. Horowitz had to say on the matter:

It’s the old “does Borrelia persist” debate

In truth, it’s not a scientific debate. It’s a political one.

There are enough scientific references on the persistence of Lyme, and clarity among Lyme doctors that have seen patients for decades respond positively to antibiotics (especially newer biofilm and persister protocols, ie dapsone and disulfiram), that if HHS were to spend the money to do a full medical literature review on the topic (I have suggested this to HHS) the debate would be over, once and for all.

Here is a brief overview of the science. Please feel free to send this list of references to the HHS TBDWG and ask them to spend the money to do a full scientific review before the third and final session of the HHS TBDWG is done.

Rationale for Long Term Treatment

I have already outlined the extensive peer reviewed literature showing seronegativity for Lyme disease in prior publications.

Regarding treatment, some physicians believe that there is no reason to be treating patients beyond the 30-day course routinely recommended by the IDSA guidelines; however there are high rates of treatment failure for all stages of Lyme disease.

According to the CDC, as many as 20% of patients remain ill after the short-term treatment protocol recommended by the IDSA (http://www.cdc.gov/lyme/treatment/). Other studies suggest the treatment failure rate for early Lyme disease may be as high as 36%:

  • Aucott JN, et al. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? Qual Life Res. 2013 Feb;22(1):75-84

In late Lyme disease, treatment failure rates may exceed 50%:

  • Cameron, D., Horowitz, R, et al: Treatment of Lyme disease: a medicolegal assessment. Ex-pert review of anti-infective therapy. 2004 Aug;2(4):533-57

Why do treatments fail?

Why do patients fail short term therapy? The peer reviewed medical literature shows chronic persistent infection despite intensive antibiotics:

  • Bradley JF,et al, The Persistence of Spirochetal Nucleic Acids in Active Lyme Arthritis. Ann Int Med 1994;487-9
  • Bayer ME, Zhang L, Bayer MH. Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme Disease symptoms. A PCR study of 97 cases. Infection 1996. Sept-Oct;24(5):347-53
  • Diringer MN, et al, Lyme meningoencephalitis- report of a severe, penicillin resistant case. Arthritis & Rheum, 1987;30:705-708
  • Donta, ST, Tetracycline therapy in chronic Lyme disease. Chronic Infectious Diseases, 1997; 25 (Suppl 1): 552-56
  • Fitzpatrick JE, et al. Chronic septic arthritis caused by Borrelia burgdorferi. Clin Ortho 1993 Dec;(297):238-41
  • Georgilis K, Peacocke M, & Klempner MS. Fibroblasts protect the Lyme disease spirochete, Borrelia burgdorferi, from ceftriaxone in vitro. J Infect Dis 1992;166: 440-444
  • Fallon BA, et al. Repeated antibiotic treatment in chronic Lyme disease, Journal of Spirochetal and Tick-borne Diseases, 1999; 6 (Fall/Winter):94-101
  • Fraser DD, et al. Molecular detection of persistent Borrelia burgdorferi in a man with dermatomyositis. Clinical and Exper Rheum. 1992;10:387-390
  • Fried MD et al, Borrelia burdorferi persists in the gastrointestinal tract of children and adolescents with Lyme Disease, JNL of Spirochetal and Tick-borne Diseases, Spring/Summer 2002; 9:11-15
  • Girschick HJ, et al. Intracellular persistence of Borrelia burgdorferi in human synovial cells. Rheumatol Int 1996;16(3):125-132
  • Hassler D, et al. Pulsed high-dose cefotaxime therapy in refractory Lyme Borreliosis (letter). Lancet 1991;338:193
  • Horowitz, R.I.; Freeman, P.R. Precision Medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/post-treatment Lyme disease syndrome: part 1. International Journal of General Medicine 2019:12 101–119

https://www.dovepress.com/articles.php?article_id=44148

  • Horowitz RI. Chronic Persistent Lyme Borreliosis: PCR evidence of chronic infection despite extended antibiotic therapy: A Retrospective Review. Abstract XIII Intl Sci Conf on Lyme Disease. Mar 24-26, 2000.
  • Haupl T, et al. Persistence of Borrelia burgdorferi in ligamentous tissue from a patient with chronic Lyme borreliosis. Arthritis Rheum 1993;36:1621-1626
  • Karma A, et al. Long term follow-up of chronic Lyme neuroretinitis. Retina 1996;16:505-509
  • Keller TL, et al. PCR detection of Borrelia burgdorferi DNA in cerebrospinal fluid of Lyme neuroborreliosis patients. Neurology 1992;43:32-42
  • Masters EJ, et al. Spirochetemia after continuous high-dose oral amoxicillin therapy. Infect Dis Clin Practice 1994;3:207-208
  • Ma Y, et al. Intracellular localization of Borrelia burgdorferi within human endothelial cells. Infect Immun 1991;59:671-678
  • Meier P, et al. Pars plana vitrectomy in Borrelia burgdorferi endophthalmitis. Klin Monatsbl Augenheilkd 1998 Dec;213(6):351-4
  • Preac-Mursic V, et al. Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis. Infection 1989;17:355-359.
  • Preac-Mursic V, et al. Persistence of Borrelia burdorferi and Histopathological Alterations in Experimentally Infected Animals. A comparison with Histopathological Findings in Human Lyme Disease. Infection 1990;18(6):332-341
  • Sapi, E. et al. The Long-Term Persistence of Borrelia burgdorferi Antigens and DNA in the Tissues of a Patient with Lyme Disease. Antibiotics 2019, 8, 183; doi:10.3390/antibiotics8040183
  • Straubinger RK, et al. Persistence of Borrelia burgdorferi in Experimentally Infected Dogs after Antibiotic Treatment. J Clin Microbiol 1997;35(1):111-116
  • Embers, M. et al. Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic treatment of Disseminated Infection. PLoS ONE 7(1): e29914. doi:10.1371/journal.pone
  • Embers ME, Hasenkampf NR, et al. (2017) Variable manifestations, diverse seroreactivity and post-treatment persistence in non-human primates exposed to Borrelia burgdorferi by tick feeding. PLoS ONE 12(12): e0189071. https://doi.org/10.1371/journal.pone.0189071

Xenodiagnosis

Chronic persistent infection with Bb despite intensive antibiotics was also proven in three recent Xenodiagnostics studies. The first and second was in mice and macaques:

  • Hodzic E, Barthold SW (2014) Resurgence of Persisting Non-Cultivable Borrelia burgdorferi following Antibiotic Treatment in Mice. PLoS ONE 9(1): e86907.

Results confirmed previous studies: Bb could not be cultured from tissues, but low copy numbers of Bb flaB DNA were detectable in tissues up to 8 months after completion of treatment & RNA tran-scription of genes was seen with visualized spirochetes.

  • Embers ME, Hasenkampf NR, et al. (2017) Variable manifestations, diverse seroreactivity and post-treatment persistence in non-human primates exposed to Borrelia burgdorferi by tick feeding. PLoS ONE 12(12): e0189071. https://doi.org/10.1371/journal.pone.0189071

In this study, “Persistence of B. burgdorferi was evaluated using xenodiagnosis, bioassays in mice, multiple methods of molecular detection, immunostaining with polyclonal and monoclonal antibodies and an in vivo culture system. Our results demonstrate host-dependent signs of infection and variation in antibody responses. In addition, we observed evidence of persistent, intact, metabolically-active B. burgdorferi after antibiotic treatment of disseminated infection and showed that persistence may not be reflected by maintenance of specific antibody production by the host.”

In humans, a recent NIH xenodiagnostic study by Dr Marques showed that among ten patients who had high levels of antibodies against B. burgdorferi after antibiotic treatment, two of those patients had “indeterminate results”, and one patient with Post Treatment Lyme disease syndrome (PTLDS) had a positive result, confirming evidence of ongoing Borrelia DNA in these patients:

  • Marques, A. et al. Xenodiagnosis to Detect Borrelia burgdorferi Infection: A First-in-Human Study. Clinical Infectious Diseases DOI: 10.1093/cid/cit939 (2014).

A recent study published by Middelveen et al also proved persistence of borrelia by culture, pathology and molecular testing after standard antibiotic therapy in patients with ongoing symptoms of Lyme disease:

  • Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease. Marianne J. Middelveen, Eva Sapi ID , Jennie Burke, Katherine R. Filush, Agustin Franco,

Melissa C. Fesler and Raphael B. Stricker. Healthcare 2018, 6, 33; doi:10.3390/healthcare6020033

Some physicians feel that there is no evidence of prolonged antibiotics helping symptoms. We know that short term antibiotics fail in 25%-71% of patients with late stage disease:

  • Berglund J, Stjernberg L, Ornstein K, Tykesson-Joelsson K, Walter H. 5-y Follow-up study of patients with neuroborreliosis. Scand J Infec Dis. 2002;34(6):421-5.
  • Valesová H, Mailer J, Havlík J, Hulínská D, Hercogová J. Long-term results in patients with Lyme arthritis following treatment with ceftriaxone. Infection. 1996 Jan-Feb;24(1):98-102

These frequent treatment relapses and failures with short term therapy are documented by other authors:

  • Logigian (1990) : After 6 mo’s of therapy, 10/27 patients treated with IV AB’s relapsed or had treatment failure.
  • Pfister (1991): 33 patients with neuroborreliosis were treated with IV AB’s. After a mean of 8.1 months 10/27 were symptomatic and borrelia persisted in the CSF in 1 patient.
  • Shadick (1994) : 10/38 pts relapsed (5 with IV) within 1 year of treatment, and had repeated AB treatment.
  • Asch (1994): 28% relapsed w/ major organ involvement 3.2 years after initial treatment

NIH studies

Many doctors use IDSA guidelines to base their conclusions to not treat sick patients with long term antibiotics. However only three NIH-funded trials have been conducted on the treatment of chronic Lyme disease:

  • Klempner M, Hu L, Evans J, Schmid C, Johnson G, Trevino R, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. The New England journal of medicine. 2001 Jul 12:85-92
  • Krupp LB, Hyman LG, Grimson R, Coyle PK, Melville P, Ahnn S, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003 Jun 24;60(12):1923-30
  • Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, et al. A randomized, pla-cebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008 Mar 25:992-1003

These were inadequate treatment trials as sample sizes were extremely small, ranging from 37 to 78 patients. Critics have pointed out that studies this small lack sufficient statistical power to measure clinically relevant improvement:

  • Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persis-tent disease. Expert Review Anti-Infective Therapy. 2014 Sep;12(9):1103-35.
  • Institute of Medicine. Clinical Practice Guidelines We Can Trust. Washington, DC: National Academies Press; 2011. Available from: http://books.nap.edu/openbook.php?record_id=1305

These trials also did not address the multifactorial causes of chronic illness, including the role of associated co-infections and abnormalities on the 16-point MSIDS map, published in the peer-reviewed literature to have an effect on the outcome of patients suffering with chronic Lyme disease/PTLDS:

Conclusion from Horowitz, R.I., Freeman, PR. Precision medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme dis-ease/post-treatment Lyme disease syndrome: part 1. https://www.ncbi.nlm.nih.gov/pubmed/30863136

https://www.dovepress.com/precision-medicine…

“Many of our patients infected with Lyme disease and associated coinfections had severe symptoms, often relapsed with commonly used therapies, and did not present with an EM rash nor meet the CDC two-tiered surveillance criteria. Almost two-thirds of patients had been exposed to between five and eight infections/coinfections and 14.5% of patients were PCR positive for B. burgdorferi despite seemingly “adequate” antibiotic therapy for months or years prior to DDS therapy (N=29, 14.5%).

Evidence of persistent infection with HHV6, Bartonella, and/or Mycoplasma was also confirmed by PCR in several patients, although many in our study had evidence of other medical problems accounting for ongoing symptoms.

These included associated immune dysfunction/immune deficiency, inflammation, environmental toxins with detoxification problems, GI problems, allergies, nutritional deficiencies, hormone, and autonomic nervous system dysregulation as well as sleep and psychiatric disorders in those suffering with post treatment Lyme symptoms.

None of these factors had been addressed in the three prior NIH randomized controlled Lyme trials, nor the European PLEASE trial and could explain in part why patients remained ill. Many patients with late Lyme disease in those trials failed conventional beta lactam, tetracycline, macrolide, or other antibiotic therapies even if given for 4–6 weeks.

International Journal of General Medicine downloaded from https://www.dovepress.com/ by 148.74.180.43 on 19-Feb-2019. Dovepress 115 Horowitz and Freeman, 2019.

Fatigue and pain

Nevertheless, two of the three clinical trials demonstrated that retreatment improved some patients’ measures, such as fatigue and pain (Krupp, Fallon) using older antibiotic protocols that did not address the role of biofilm microcolonies/persister forms. Other studies have shown improvement in cognitive function in those with Lyme encephalopathy (Fallon).

  • Fallon BA, Petkova E, Keilp J, Britton C. A reappraisal of the U.S. clinical trials of Post-Treatment Lyme Disease Syndrome. Open Neurology Journal. 2012;6(Supp. 1-M2):79-87.
  • Delong et al. Antibiotic retreatment of Lyme disease in patients with persistent symptoms: A biostatistical review of randomized, placebo controlled, clinical trials. Contemporary Clinical Trials 33 (2012), 1132-1142

The medical literature does in fact show a benefit to using longer treatment regimens for disseminated Lyme Disease:

  • 1. Wahlberg,P. et al, Treatment of late Lyme borreliosis. J Infect, 1994. 29(3): p255-61 →31% improved w/ 14 days of Rocephin, 89% improved w/ Rocephin + 100d of Amoxicillin and Probenecid, 83% improved w/ Rocephin, then 100 days of cephadroxil
  • 2. Donta, ST., Tetracycline therapy for chronic Lyme disease. Clin Infect Dis, 1997. 25 Suppl 1: p.S52-6. →277 pts with chronic LD treated between 1-11 months: 20% cured, 70% improved, 10% failed
  • 3. Oksi, J et al., Comparison of oral cefixime and intravenous ceftriaxone followed by oral amoxicillin in disseminated Lyme borreliosis. Eur J Clin Microbiol Infect Dis, 1998. 17(10) 715-9→ 30 pts w/ chronic Lyme disease were treated for 100 days, and 90% had good or excellent responses
  • 4. Oksi, J., et al. Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis. Ann Med, 1999. 31(3):p.225-32→32/165 patients with disseminated Lyme were treated for 1 or more months of antibiotics and showed that even more than 3 months of treatment may not eradicate the spirochete, and that longer-term therapy may be necessary.

This last study detected chronic persistent Lyme by both PCR and culture, the “gold standard” for proving chronic infection.

Persister bacteria

During the past several years, newer peer-reviewed scientific publications by Dr. Horowitz and other researchers have shown that Borrelia can act as a “persister” bacteria, like TB and leprosy, due in part to biofilms protecting the organism, as well as dormant forms not killed by standard antibiotic protocols.

In 2016, Dr Horowitz published the first statistically validated oral “persister” protocol for Lyme disease, based on scientific research from Johns Hopkins University and Dr Kim Lewis’s lab at Northeastern University. The list below references some of the most recent scientific articles on the ability of Borrelia burgdorferi to persist in biofilms and stationary ‘persister forms’:

  • Persisters, persistent infections and the Yin–Yang model, Ying Zhang; Emerging Microbes and Infections (2014) 3, e3;
  • Feng, J, Zhang, Y. et al. Stationary Phase Persister/Biofilm Microcolony of Borrelia burgdorferi Causes More Severe Disease in a Mouse Model of Lyme Arthritis: Implications for Understanding Persistence, Post-Treatment Lyme Disease Syndrome (PTLDS), and Treatment Failure. Published in Discovery Medicine on March 28, 2019. http://www.discoverymedicine.com/…/persister-biofilm…/
  • Rudenko, N. et al. Metamorphoses of Lyme disease spirochetes: phenomenon of Borrelia per-sisters. Parasites Vectors (2019) 12:237. https://doi.org/10.1186/s13071-019-3495-7
  • Zhang, Y (2015) Drug Combinations against Borrelia burgdorferi Persisters In Vitro: Eradica-tion Achieved by Using Daptomycin, Cefoperazone and Doxycycline. PLoS ONE 10(3): e0117207
  • Identification of new compounds with high activity against stationary phase Borrelia burgdorferi from the NCI compound collection. Zhang, Y. Emerging Microbes and Infections (2015) 4, e31
  • Lewis K. Persister cells, dormancy and infectious disease. Nature Rev Microbiol. 2007; 5 (1): 48–56. doi:10.1038/nrmicro1557. PMID 17143318.
  • Horowitz RI, Freeman PR. The use of dapsone as a novel “persister” drug in the treatment of chronic Lyme disease/post treatment Lyme disease syndrome. J Clin Exp Dermatol Res. 2016;7:345.
  • Horowitz, R.I.; Freeman, P.R. Precision Medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/post-treatment Lyme disease syndrome: part 1. International Journal of General Medicine 2019:12 101–119
  • https://www.dovepress.com/articles.php?article_id=44148
  • Horowitz RI, Freeman PR Are Mycobacterium Drugs Effective for Treatment Resistant Lyme Disease, Tick-Borne Co-Infections, and Autoimmune Disease? JSM Arthritis(2016) 1(2): 1008.
  • Horowitz, R.I.; Freeman, P.R. Efficacy of Double-Dose Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) and Associated Co-infections: A Report of Three Cases and Retrospective Chart Review. Antibiotics 2020, 9, 725. https://doi.org/10.3390/antibiotics9110725
  • Horowitz, R.I., Murali, K., Gaur, G. et al. Effect of dapsone alone and in combination with intracellular antibiotics against the bio-film form of B. burgdorferi. BMC Res Notes 13, 455 (2020). https://doi.org/10.1186/s13104-020-05298-6. https://bmcresnotes.biomedcentral.com/…/s13104-020…
  • Gao J, Gong Z, Montesano D, Glazer E, Liegner K. “Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis: Retrospective Review of First 3 Years’ Experience in One Medical Practice. Antibiotics (Basel). 2020 Dec 4;9(12):868. doi: 10.3390/antibiotics9120868. PMID: 33291557; PMCID: PMC7761882. https://pubmed.ncbi.nlm.nih.gov/33291557/

The complexity and effectiveness of treating Lyme disease with a broad-based treatment model and using persister drug regimens was also highlighted in the journal Healthcare in 2018:

  • Horowitz, R.I.; Freeman, P.R. Precision Medicine: The Role of the MSIDS Model in Defining, Diagnosing, and Treating Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome and Other Chronic Illness: Part 2. Healthcare 2018, 6, 129. https://www.ncbi.nlm.nih.gov/pubmed/30400667

PDF Version: http://www.mdpi.com/2227-9032/6/4/129/pdf

In conclusion, the scientific literature shows unreliable blood tests, persistence of Borrelia despite short term treatment, and peer-reviewed clinical studies showing benefit of using longer term antibiotic therapies with newer biofilm/persister therapies being effective in many resistant patients.

It is therefore incumbent on the physician to use their best clinical judgment in treating their patients. Lyme and associated tick-borne diseases are spreading in the United States and worldwide, increasing health care costs, causing disability and widespread suffering. It is essential to update treatment guidelines based on the above-referenced peer-reviewed science.

Sincerely,

Richard I Horowitz, M.D., Medical Director, HVHAC

Board Certified Internal Medicine

Member, HHS Tick-borne Disease Working Group 2017-2019

Co-chair, HHS Other Tick-borne Diseases and Co-infections 2017-2019

Member, HHS Subcommittee Babesia and Tick-borne Viruses 2019

Member, NYS DOH TBDWG 2021-2022

***

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

Category:

Lyme, research

Two Doctors Correct IDSA

https://www.lymedisease.org/repeating-information-idsa/

TOUCHED BY LYME: Repeating incorrect information doesn’t cause it to become correct

In November 2021, a commentary promoting the Infectious Diseases Society of America’s newly updated Lyme disease guidelines was published in the American Journal of Medicine.

(Unfortunately, those new guidelines have made it even harder for Lyme patients to get properly diagnosed and treated than the previous ones from 2006.)

This month, the AJM published two letters from ILADS-affiliated doctors who are pushing back against the IDSA.

One is from Dr. Betty Maloney, a co-author of the ILADS guidelines and a member of the current federal Tick-Borne Disease Working Group. She takes IDSA authors to task for recommending 10 days of doxycycline for a Lyme-related rash.

Inadequately sourced, potentially dangerous

“If the primary treatment goal for managing patients with erythema migrans (EM) rashes is to restore patients to their pre-Lyme health status, then the guidelines endorsed by Auwaerter et al are both inadequately sourced and potentially dangerous,” Dr. Maloney writes.

She notes that of the two trials cited in support of that advice, only one applies to patients in the United States. And in that study, almost half of the subjects failed to complete the 30-month trial.

Results at the 12-month observation point, she points out, suggest that “this regimen is not highly effective and puts many at risk for post-treatment sequalae that adversely impact quality of life.”

She says that the other study, conducted in Europe, is not generalizable to US patients, due to differences between the US and European Lyme-inducing Borrelia species.

According to Dr. Maloney, the IDSA authors ignored other studies showing a high clinical failure rate of the 10-day treatment. She concludes by saying:

“It is challenging to provide evidence-based medical care when there is little or no high-quality evidence to rely on. It is harder still when influential authors promote inadequate guidelines without meaningfully disclosing their shortcomings. Clinicians and their patients deserve better.”

Read Dr. Maloney’s full letter here.

Erroneous statement about single-dose doxy

A second letter, from Dr. Bea Szantyr, focuses on the IDSA’s recommendation to give a single dose of doxycycline after a tick bite.

“Repeating incorrect information does not cause it to become correct,” Dr. Szantyr writes.  “The erroneous statement by Auwaerter et al, that taking single-dose doxycycline after an Ixodes tick bite prevents Lyme disease, has not been demonstrated by any North American study to date.

“Although repeatedly cited as demonstrating this, the 2001 Nadelman study did not follow its subjects long enough to demonstrate this point. It is well known that later manifestations of Lyme disease may develop beyond the 6-week follow-up period used by the investigators.”

Dr. Szantyr proposes that it would be more valid to say that the optimum dosage and duration of antibiotic prophylaxis for preventing Lyme disease after an Ixodes tick bite remains unknown.

Read Dr. Szantyr’s full letter here.

In some quarters—including those of government health officials, many practitioners, and most insurance companies—the IDSA Lyme guidelines are viewed as truth handed down from the mountaintop.

When those guidelines keep repeating such false—or incomplete—information, Lyme patients suffer.

Bravo to Drs. Maloney and Szantyr for calling the IDSA authors on their errors. We need more of this.

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

Category:

Activism, Lyme, research

Military, Family Members, and Lyme: Being Shot At Not As Bad As Gaslighting, Abandonment, and Betrayal

https://danielcameronmd.com/are-military-family-members-at-risk-for-lyme-disease/

Are military family members at risk for Lyme disease?

It is often suggested that military service members are at an increased risk for contracting Lyme disease, given that they frequently work outdoors in tick-habitats, surrounded by tall grass, brush, weeds and leaf litter. But what about their family members? Are they safer?

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A study by Schubert and Melanson, entitled “Prevalence of Lyme Disease Attributable to Military Service at the USMA, West Point NY: FY2016–2018,” looks at the exposure of military personnel and their families to the Ixodes scapularis (or black-legged) tick, the vector of Lyme disease. [1]

The authors examined cases of Lyme disease treated at a hospital on the West Point Military Reservation, in New York between 2016 and 2018. Out of 144 cases identified, 63 involved military personnel, but family members accounted for 81 cases.

The period prevalence of Lyme disease for military personnel was 292 encounters per 100,000 during a 3-year period. However, family members were at greater risk, with a period prevalence of 581 cases per 100,000.

These findings “show a difference in period prevalence between service members and family members,” writes Schubert, “with the family members being at higher risk to contract Lyme instead of service members, as is commonly suggested in the literature.”

The authors point out that further research is needed to determine if these findings were specific to West Point or are comparable across the military. Tick exposure, they write, may have been less at West Point than at other military locations.

“At West Point, the majority of active-duty military work indoor jobs during the academic months and spend limited time in a training field environment,” Schubert points out.

Interestingly, however, “the data presented here suggest that proper personal protective measures (Permethrin treated uniforms and tick check training) have a significant effect on Lyme disease period prevalence,” since military personnel who were better protected and trained were less likely to contract Lyme disease.

The authors did not discuss the outcomes for the 63 Lyme disease cases.

References:
  1. Schubert, S. L. and V. R. Melanson (2019). “Prevalence of Lyme Disease Attributable to Military Service at the USMA, West Point NY: FY2016-2018.” Mil Med.

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https://danielcameronmd.com/soldier-dismissed-failing-lyme-disease-treatment/

Soldier dismissed from active duty after failing Lyme disease treatment

soldier-lyme-disease-treatment

Welcome to another Inside Lyme Podcast with your host Dr. Daniel Cameron. In this episode, Dr. Cameron will be discussing the case of a 21-year-old soldier who was dismissed from active duty after failing treatment for multiple illnesses including Lyme disease.

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The case was first described by Melanson and colleagues in a paper entitled “The Epistemic Fallacy: Unintended Consequences of Empirically Treating (Clinically Diagnosed) Chronic Lyme Disease in a Soldier.”1

“A 21-year-old, Division 1 student athlete patient presented with heart palpitations and frequent unprovoked adrenaline rushes,” wrote the authors. His symptoms were initially dismissed as stress.

Four months later, testing for Epstein-Barr virus was positive but serological testing for Lyme disease was negative. “He was diagnosed with EBV reactivation and prescribed rest and recovery,” the authors wrote.

The man graduated but remained on medical leave since his symptoms had not resolved.

He was presumed to suffer from persistent mononucleosis like symptoms and Traumatic brain injury (TBI) attributed to possible post-concussion syndrome related to sports injuries, the authors explained.

The patient was then treated with Hyperbaric Oxygen Therapy (HBOT). However, after two sessions, it was discontinued due to an increase in symptoms including heart palpitations, flank pain, myalgias, and neuropathy.

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Although repeat testing for Lyme disease was negative, the man was treated clinically for Lyme disease based on symptoms, possible tick exposure during military trainings and the lack of other definitive findings.

He received three courses of doxycycline. Further Lyme disease tests were inconclusive.

The patient was forced to stop treatment after it worsened his symptoms, causing an increase in joint pain, intermittent nerve pain, headache, fatigue, cognitive difficulties, anxiety, mild depression, and increased chest pain.

The patient then sought treatment with a functional medicine doctor. His workup focused on mycotoxicosis in part due to his living and training environments.

He had a homogeneous single nucleotide polymorphism in the MTHFR gene suggestive a low level of metabolic detoxification and an abnormal mycotoxin urine panel.   He was treated for 3 months with IV phosphatidylcholine (up to 10 amps), IV glutathione (1,200 mg), IV Leucoviron (10mg), and subcutaneous B12 (1000 micrograms). He had minor improvements in fatigue and stamina but stopped after 3 months due to cost. His follow-up urine mycotoxin urine panel was negative.

The man remained ill and “was unable to perform moderate-or-strenuous physical exercise or cognitive activity due to the following symptoms:

  • cognitive impairment affecting short-term memory and ability to focus
  • severe fatigue, and post exertion malaise
  • asthma and increasing allergic-type reactions with chemical and food sensitivities as well as histamine intolerance
  • progression to heat/ultraviolet induced urticaria

“Additionally, the patient struggled emotionally with anxiety, depression, environmental stimulation (such as bright and flashing lights and loud noises), and sensitivity to stress.”

He was subsequently diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) following resolved acute mycotoxicosis.

The young man was considered unfit for duty by the Army Medical Evaluation Board for the following reasons: “Lyme disease, mycotoxicosis, chronic fatigue syndrome, allergic rhinitis and vasomotor rhinitis.”

The authors did a great job of describing the severity of symptoms and poor function of a soldier despite evaluation and empiric treatments for CFS/ME, following resolved acute mycotoxicosis and Lyme disease. Unfortunately, the soldier was unfit for duty despite extensive treatment for a wide range of illnesses.

The following questions are addressed in this Podcast episode:

  1. Have you seen patients with this range of symptoms?
  2. What is HBOT?
  3. What is integrative medicine?
  4. What is empiric treatment?
  5. Was Lyme disease a consideration?
  6. What other illnesses were considered?
  7. Are their patients with Lyme disease that fail treatment?
  8. Are their patients with the other illnesses discussed failing treatment?

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Thanks for listening to another Inside Lyme Podcast. Please remember that the advice given is general and not intended as specific advice to any particular patient. If you require specific advice, please seek that advice from an experienced professional.

References:
  1. Melanson VR, Hering KA, Reilly JL, Frullaney JM, Barnhill JC. The Epistemic Fallacy: Unintended Consequences of Empirically Treating (Clinically Diagnosed) Chronic Lyme Disease in a Soldier. Med J (Ft Sam Houst Tex). Jan-Mar 2022;(Per 22-01/02/03):50-55.
Related Articles:

Lyme disease forces 24-year-old army officer out of military

Study explores the risk of tick bites among german military personnel

Military dependent child contracts Lyme disease abroad

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https://www.lymedisease.org/tbdwg-feb28-malachowski/

Being shot at in combat not as bad as mistreatment for Lyme disease

Feb. 28, 2022

Col. Nicole Malachowski delivered the following public comment to the February 28, 2022, meeting of the federal Tick-borne Disease Working Group.

I’m Colonel Nicole Malachowski, United States Air Force, Retired.

Lyme disease & tick-borne illness pose a unique risk to military service members, their families, and our veterans. This cohort is high-risk, due to the unique exposures of global military service. This is a Military Readiness issue.

In 2017, after 21 years of honorable service as a fighter pilot, I was medically retired after being found “100% unfit for duty due to chronic systemic tick-borne illness.”

Since my retirement, I’ve served as a trained Air Force Wounded Warrior Program Mentor (no endorsement implied) to airmen facing medical discharge. Not a month goes by that I’m not working with someone dealing with Lyme disease.

Front line medical providers in the Department of Defense (DoD) and Veterans Administration (VA) are not properly trained to consider Lyme disease and global strains of Borrelia in their differential diagnosis.

We are medically retiring honorable service members that are undiagnosed and misdiagnosed.

Millions of dollars in training goes to waste

This is unacceptable. Our taxpayers have invested millions of dollars into the training of our military members, and in too many cases, the American public is not getting a proper return on their investment.

The CDC increased its Lyme disease case count to 476,000 annually. That number is low. Why? They choose not to include the medical records of the largest healthcare system in America: the DoD and the VA.

Even if they did, the case count would still be low because the DoD and VA rely heavily on serology and the 2-tier testing system meant for surveillance use only. Front line DoD and VA medical providers are untrained to, and uncomfortable with, making a clinical diagnosis.

It took me four years to get the VA disability system to recognize the very illness for which I was medically discharged. As part of this battle, they forced me to succumb to a psychological evaluation to ensure my chronic symptoms were not psychosomatic. The indignity of this insulting appointment was swept away by the psychiatrist’s findings, which concluded my chronic illness is, in fact, physical in nature.

Yet, she did diagnose me with “medically-induced PTSD.” She accurately pinpointed the damage done by years of struggle for diagnosis, access to care, treatment, disability benefits, and the appalling lack of support from both the DoD and VA.

Abandonment and betrayal

Think about it: I’ve been shot at in combat, but that is not what caused my PTSD.  It was caused by the unnecessary controversy surrounding Lyme disease, years of gaslighting, abandonment and betrayal by the DoD, an abysmal lack of education & awareness by front line clinicians, poor diagnostics, therapeutic standards that did not cure me, and a VA disability system that fails to understand chronic tick-borne illness.

Our service members, military families, and veterans deserve better. This requires a whole of government approach, one that the DoD and VA are uniquely suited to positively impact.

This is, indeed, a military readiness issue. You want to thank me for my service? Fix this problem. Thank you.

Col. Nicole Malachowski was the first female Thunderbird pilot. In addition to commanding a fighter squadron, she served as a White House Fellow and an advisor to First Lady Michelle Obama. She is now a professional speaker and fierce advocate for the cause of Lyme and other tick-borne diseases.

For more: 

Category:

Activism, Lyme, Prevention, research, Ticks