You Can Get Medically Assisted Dying Easier Than Treatment for Chronic Lyme Disease
There are certain aspects of medicine and specifically medical politics that make my blood boil. All of my calm abiding meditation goes out the window when I see the Canadian broadcasting system continuing their biased attack on Lyme disease patients in Canada, especially when it is easier to get medically assisted dying in a country than it is to get treated for a chronic illness. This is what was in the news media this week, once again:
Lyme disease is littered with misinformation. Celebrities are part of the problem, experts say. Chronic Lyme isn’t medically recognized. It’s a controversial term that some say fuels a dubious industry.
This news article from a Canadian broadcasting system, casting doubt on whether chronic Lyme disease and persistent infection is real, was released the same week that this article was highlighted by LymeDisease.org on January 27th:
Does anyone in the news media actually do a medical search (or know how to do one) before reporting news and purporting to know the truth? The article on the persistence of Lyme disease came out several days before the Canadian broadcasting system released their news feed. This is the second article I saw on the subject of chronic Lyme being a ‘non-disease’ coming out of Canada in the past few weeks, where the best they can do is to slam medical clinics trying to help patients. See the last Medical Detective Substack I did on sleuthing the ‘mysterious brain disease in Canada’ which likely involves some patients having chronic tick-borne illness mixed with mold and other environmental toxins:
I reviewed the prior news feeds from a major Canadian broadcasting system to figure out what were the most likely culprits. The lack of finding answers for these sick Canadian patients who have suffered for years is IMO due to a basic lack of knowledge of functional medicine and the medical literature on how to diagnose and treat Lyme and associated disorders as well as mold toxic illness. Several people with this unexplained illness died.
A Moral Debacle Based on Dysfunctional Medical Politics
This fiasco regarding chronic Lyme disease arose a long time ago. In fact, it stems from 50 years of dysfunctional medical politics in the United States. We might think that this debate only affects us in America, but it has affected patients across the world, limiting their treatment options. In this case, the Canadian healthcare system has taken sides in a medical debate, where they are choosing the IDSA point of view that doesn’t believe Borrelia persists. Yet it does…which we will discuss below, and that leads to unnecessary patient suffering and occasionally, as we will discuss, assisted death.
If you suffer with an ‘unexplained chronic illness’ like chronic Lyme disease/PTLDS in Canada and no clear options are available to help you with your suffering, the system, instead of trying dapsone combination therapy and evaluating MSIDS factors (which have been published in the medical literature as being clear options helping patients…see below), gives you the choice instead to take your life. That is perverse. How about spending the time and money to do a randomized, multicenter, placebo-trial on dapsone combination therapy and the MSIDS model for CLD/PTLDS and see if you can replicate my results? According to my 41 years of experience, your patients who are suffering should see some relief. Some will go into remission. So why is the Canadian system not considering this?
Two Standards of Care
There are two divergent standards of care regarding the testing and treatment of Lyme disease in the United States: The IDSA and ILADS guidelines. These 2 standards of care vary in their diagnostic and treatment recommendations. Key points of the IDSA guidelines are that Lyme tests are held to be reliable, and patients with persistent Lyme symptoms after standard treatment have Post Treatment Lyme Disease (“PTLD”) with possible autoimmune phenomenon and pieces of dead bacteria driving chronic illness. The ILADS guidelines on the other hand state that Lyme tests are unreliable and that multiple factors may account for persistent symptoms. I was one of the authors of the evidence-based 2004 ILADS guidelines, published in Expert Review of Anti Infective Therapy (Evidence-based guidelines for the management of Lyme Disease. Cameron, Horowitz, et al. Expert Review of Anti-Infective Therapy 2(1) 2004).
Physicians in the United States have a choice to follow either of these two evidence-based guidelines, but there are known problems with the IDSA guidelines. There was a published scientific review in the Archives of Internal Medicine which analyzed the overall level of evidence behind the IDSA guidelines:
Analysis of Overall Level of Evidence Behind Infectious Diseases Society of America Practice Guidelines, Dong Heun Lee, MD; Ole Vielemeyer, MD; Arch Intern Med. 2011;171(1):18-22
As per the conclusions of the authors: “We analyzed the strength of recommendation and overall quality of evidence behind 41 IDSA guidelines released between January 1994 and May 2010.
Their conclusions: “More than half of the current recommendations of the IDSA are based on level III evidence only (opinion). Until more data from well-designed controlled clinical trials become available, physicians should remain cautious when using current guidelines as the sole source guiding patient care decisions”.
The newer guidelines by the IDSA do not incorporate any of the recent science on biofilms and persisters, and the Canadian healthcare system has chosen to adopt IDSA guidelines instead of giving doctors a choice, as we have here in the US to follow ILADS guidelines. Unfortunately, when you deny that an infection can persist and can cause chronic symptoms, or insist that your screening tests are accurate, you cause unnecessary suffering for your patients and healthcare costs will rise. In some circumstances, the effects of a chronic Borrelia infection are severe enough that some patients want to end their lives (and in most cases when patients are severely ill, it is the 3 Bs: Borrelia, Babesia and Bartonella mixed with mycotoxins and MSIDS abnormalities based on my experience). See the Intl Journal of Medicine article and Healthcare article we published years ago, reviewing the experience of dapsone combination therapy in 200 chronically ill individuals with Lyme and associated illnesses:
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/precision-medicine-retrospective-chart-review-and-data-analysis-of-200-peer-reviewed-article-IJGM
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
In those articles, we found evidence of chronic persistence of multiple infections:
This was published 7 years ago. We found DNA and RNA evidence of persistence in our patients who improved after taking dapsone combination therapy. In fact, 14.5% of our patients in that published study had evidence of chronic Lyme; many had chronic Babesia, failing classical treatments like Mepron and Zithromax and Clindamycin and Quinine, as well as showing persistence of Bartonella, tularemia, Brucella, Mycoplasma species and viruses. There wasn’t one thing wrong with them. That is one of the first problems in an outdated healthcare model that looks for one cause for a chronic disease. Look at the number of MSIDS variables we found in our chronically ill patients in that study. You will see that the majority of individuals had multiple inflammatory variables, making them ill:
Proof of Persistence Has Been Around for A Long Time
The recent article that released this past week wasn’t the first time the medical literature had proof of persistence. The slide below from my doctor training course (which is online, see www.cangetbetter.com ) provides some prior references:
You Can Die from Lyme Disease. We Don’t Need More Help Getting There
It’s bad enough that you can die from getting Lyme disease, as a young man in our area found out. He succumbed due to a 3rddegree heart block from Lyme disease after coming back from Rhode Island visiting colleges for the first time. Joseph Elone was on the front pages of our local paper and was one of several people that the CDC reported that year that died of Lyme carditis. The story was so moving that Mary Stuart Masterson, whom many of you know from TV and film (Fried Green Tomatoes, Benny and Joon, and most recently Blindspot which I highly advise seeing) ended up writing and directing a script with her husband Jeremy Davidson. The production was called ‘The Little Things.’ It discussed how a small tick can take a precious young life. I was in the talkback at the end of the show, answering questions with a live audience. It was performed in several theatres, including the Bardavon theatre in Poughkeepsie. See below:
So Does Lyme Persist?
Yes. Unequivocally. The article published this past week in the medical literature listed published studies showing chronic persistence and potential treatments. See below the article by Dr Stricker.
Why do patients fail short term therapy?
The peer reviewed medical literature shows chronic persistent infection despite intensive antibiotics. This is from our own list of references which we have referred to over the years:
• 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
Chronic persistent infection with Bb despite intensive antibiotics was also proven in three 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 transcription 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.”
There was also an animal study, by Tulane researcher, Dr Monica Embers and colleagues that proved in November 2023 that not only does Borrelia persist in mice after single antibiotic therapies, but that dapsone combination therapy in double and triple antibiotic combinations completely eliminated the infection, corroborating our 9 published clinical studies on dapsone, as well as our culture study showing that combination antibiotic therapy with persister drugs is superior to single antibiotic protocols:
• Alruwaili Y, Jacobs MB, Hasenkampf NR, Tardo AC, McDaniel CE and Embers ME (2023) Superior efficacy of combination antibiotic therapy versus monotherapy in a mouse model of Lyme disease. Front. Microbiol. 14:1293300. doi: 10.3389/fmicb.2023.1293300
https://www.frontiersin.org/articles/10.3389/fmicb.2023.1293300/full
In humans, an 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 prior 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 Patients With A Potentially Treatable Illness Are Therefore Applying For Medical Assistance in Dying
There was a high-profile case in Quebec a few years back about a young woman who suffered with chronic Lyme disease. She couldn’t get help and chose medical assistance in dying. See below:
Since I was not personally involved in this case, I can’t comment on the details, but I dedicate this Substack to Stephanie and all of the lovely Canadian patients who have come to see me over the years who have improved with our therapy (as well as for my love of Canada and the Canadian people, some of the nicest, sanest people I have met).
Another Canadian Patient Wants to Die With Crippling Mental Health Issues
What if this Canadian actress discussed below had resistant mental health issues due to Lyme, Bartonella, Babesia, mold and MSIDS factors? Did anyone check?
“She has tried over two dozen medications, several types of behavioral, talk, and art therapies, and electroconvulsive therapy over the years — but has experienced little reprieve from the anguish of her mental illnesses, Brosseau recalled.”
If anyone has access to Claire, please let her know I would happy to discuss testing and potential treatments with her healthcare providers. At no cost. I have seen resistant mental illnesses improve with dapsone combination therapy and treating MSIDS factors. Two of the case studies, including two women with severe depression, anxiety and one with hallucinations are in full remission and we published this in 2024. See below:
Medically Assisted Dying Was Recently Approved in NY
We need to improve the testing and treatment of Lyme and associated diseases, otherwise we face the same problem in New York. See the article below from late December:
Final Dedication
Any patient who is considering ending their life because they have suffered from a chronic fatiguing, painful, neuropsychiatric illness like chronic Lyme disease and have not been able to get help needs to go outside their healthcare system if the system denies that the disease is real and treatable. This recently happened in Canada. It will likely soon happen in NY. If you or a family member or loved one suffers with a resistant or ‘unexplained chronic fatiguing, musculoskeletal, painful neuropsychiatric illness,’ whether it is called ‘chronic Lyme disease’ or not, then this Substack is for you. The full protocol on how to diagnose and treat chronic Lyme and associated diseases can be found in our publications.
As opposed to the recent Canadian broadcast that claims that ‘chronic Lyme disease is not medically recognized,’ the medical literature and experience of doctors in the trenches says otherwise. And dysfunctional medical politics are not just affecting celebrities like Justin Timberlake (who I loved in Palmer, if you have not seen this movie).
Justin Timberlake has everything to live for. Do you really think he is making this up? Lyme disease is in epidemic proportion worldwide and is the ‘great imitator.’ Before considering taking your life or having someone with chronic Lyme consider such extreme measures, please speak to them about dapsone combination therapy and the MSIDS model. After 41 years’ experience seeing over 13,000 chronically ill patients, there are answers and hope. True hope. I have seen this myself. Many times. Let’s not let poor, uninformed reporting and dysfunctional medical politics shorten a precious human life whose gifts may enrich not only themselves but the world around them.