Dr. Richard Horowitz
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Is Chronic Lyme disease/PTLDS really a rare condition? Over 300,000 Americans get exposed to year (CDC figures), and approximately 2 million individuals suffer from PTLDS (DeLong, A.; Hsu, M.; Kotsoris, H. Estimation of cumulative number of post-treatment Lyme disease cases in the US, 2016 and 2020. BMC Public Health 2019, 19, 352).
That is not including those diagnosed with Chronic Fatigue Syndrome/M.E., or Fibromyalgia (up to 5% of the US population, i.e., 17 million individuals) who have the same symptoms as chronic Lyme disease: fatigue, musculoskeletal pain, headaches, cognitive difficulties, sleep disruption and dysautonomia). Knowing that antibody tests can miss up to roughly 40-50% of patients, that could theoretically be another 8 million people suffering.
But wait. Then there are the 23 million Americans with autoimmune illness in the US, and borrelia combined with environmental toxins (mercury, asbestos, small particle pollution, BPA..) can cause autoimmune manifestations. We have seen patients come in with a diagnosis of 'seronegative rheumatoid arthritis or MS, and it turned out it was Lyme-MSIDS. Could a few more million Americans have Lyme and associated diseases?
And what about the 46.5 million Americans with pre-clinical dementia? Lyme, other infections and environmental toxins can cause dementia (Miklossy, J.; Kasas, S.; Zurn, A.D.; McCall, S.; Yu, S.; McGeer, P.L. Persisting atypical and cystic forms of Borrelia burgdorferiand local inflammation in Lyme neuroborreliosis. J. Neuroinflammation 2008. 5, 40). Perhaps at least 10 million of those Americans (conservatively) have borreliosis. So is chronic Lyme and PTLDS really rare?
Lyme is the great imitator. Until someone at the top of our health care system decides to shift the paradigm and look at a multifactorial model of chronic illness (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), we will continue to name diseases and throw drugs at them. Leading to over 50% of Americans having at least one chronic illness (this is a sobering statistic) with health care costs rising each year. I would suggest based on my experience of treating over 13,000 chronically ill patients over the past 30 years that a better approach would be to look at multiple causes of inflammation and their downstream effects (the MSIDS model). Then and only then, mixed with true compassion for people's suffering, will we be able to make significant advances in medicine and once and for all, solve the mystery of Lyme and chronic disease. Oh wait. That was the title of my first book published 7 years ago.
NY Times Science Best Seller: Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease. Dr Richard I. Horowitz. St Martin’s Press, NYC. Publication date November 2013
HC ISBN-13: 978-1-250-01940-0
ISBN-10: 1-250-01940-0
6 1/8 9 ¼ ● 526 pages
EISBN-13: 978-1-250-03848-7
Disclaimer: The views expressed are those of Dr Richard Horowitz, and do not represent the views of the Tick-Borne Disease Working Group, HHS or the United States
Also, there are several additions and clarifications I would add to this article. The HMQ is a validated symptom questionnaire to help diagnose chronic Lyme/PTLDS (Empirical Validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for Suspected Lyme Dis-ease. Maryalice Citera1¶*, Ph.D., Phyllis R. Freeman2¶, Ph.D., Richard I. Horowitz2¶, M.D., International Journal of General Medicine 2017:10 249–273), the immune system is affected in Lyme (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),
and persister drug regimens like dapsone have already been shown to be effective in relieving 8 major Lyme symptoms in 300 patients in two separate retrospective studies (Horowitz RI, Freeman PR (2016) Are Mycobacterium Drugs Effective for Treatment Resistant Lyme Disease, Tick-Borne Co-Infections, and Autoimmune Disease?. JSM Arthritis 1(2): 1008.
Horowitz RI, Freeman PR (2016) The Use of Dapsone as a Novel “Persister” Drug in the Treatment of Chronic Lyme Dis-ease/Post Treatment Lyme Disease Syndrome. J Clin Exp Dermatol Res 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)
The debate in medicine on whether Lyme is chronic has been going on for approximately 40 years. The only way to get past this stalemate, which hurts hundreds of thousands of patients per year, is to do a randomized, blinded, placebo controlled trial with persister drugs like dapsone and disulfiram. I have seen them work when traditional antibiotics fail (I'm writing up a new study as we speak). Is it really impossible between all the Lyme groups and government money going towards tick-borne research, that we can't come up with several million dollars to do this study and put the debate to rest? That would be my hope before the third round of the HHS TBDWG comes to a close.
Chronic Lyme disease is a rare, but serious condition — here's how to know if you have it
