Lyme doctor calls out academic bias
LDAA Patron Dr Richard Horowitz calls out academic bias in new Lyme paper “Risk of post-treatment Lyme disease in patients with ideally-treated early Lyme disease: A prospective cohort study” was just published in the International Journal of Infectious Diseases. It regurgitates the same old assumptions that have held research back for decades: That PTLD is rare, that chronic symptoms are non-specific, and that Lyme is not persistent infection.
This is Dr Horowitz’s response:
A new article on CLD/PTLDS [chronic Lyme disease/post treatment Lyme disease].
What is significant and what needs further clarification?
PTLD is not necessarily rare, nor an inconsequential public health concern. Especially considering ongoing tick habitat expansion (Sonenshine, 2018). Lyme disease now affects an estimated 476,000 patients annually in the United States (Kugeler et al, 2021). Furthermore, although the majority of patients may not progress to PTLD, this should not invalidate the experience of the subset of those patients who do.
The most frequently identified PTLD symptoms are fatigue, pain, and cognitive dysfunction (Rebman et al, 2017b; Wormser et al, 2006). These symptoms are often non-specific and are often reported in general clinical populations as well as in patients with prior LD.
OK, lets stop there for a moment. Most of the references are Wormser discussing PTLDS or John’s own work and that presents a problem with literature bias.
You are ignoring my published experience of 13K chronic LD patients that have shown that number one, these symptoms are NOT non-specific, as migratory joint, muscle and especially nerve pain are the hallmark of Lyme.
Secondly, we know that there are dozens and dozens of strong scientific references showing that Lyme can persist, and that CLD/PTLDS may be multifactorial in nature (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.).
Thirdly, persister drug combinations and biofilm agents provide a solution for at least 50% with an 8 week course of double dose dapsone combination therapy including those with PTLDS.
(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.)
So this article represents clear literature bias IMO, ignoring a large body of work accumulated by seeing over 13,000 LD patients in more than 30 years which has been published in the peer-reviewed literature. Non-specific symptoms? I think not. Those with symptoms that come and go with good and bad days, complaining of migratory pain, with fatigue, POTS, cognitive dysfunction, insomnia and a host of other symptoms who improve or worsen with antibiotics are not non-specific. A high HMQ score and borrelia specific band on an Immunoblot helps to establish the diagnosis with those symptoms. CFS/ME and FM if due to a virus, or environmental toxin, will not share these characteristics.
Why do these people suffer from PTLDS? How is it that Lyme had been discovered over 40 years ago with millions of people suffering and we haven’t gotten past medical politics to find a cure? The 8 week double dose dapsone combination therapy is the closest I have found to a cure when those affected do not have co-infections like babesia and bartonella.
And to ignore the role of co-infections in a Lyme patient when discussing chronic symptoms, is beyond comprehensible. I and many others have published on it (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)
I am disappointed that we haven’t seen more progress in the field finding solutions, instead of just rehashing the same old conclusions over and over again.
So let’s not pretend we have no idea why those affected are sick. What we need is targeted research money in excellent universities to find more efficient persister drug combinations, and solutions for chronic co-infections like babesia and bartonella. What we don’t need is to rehash the literature and only give a partial picture of why these sick patients remain ill. Please re-read the above references and look at ‘Why Can’t I Get Better?” and ‘How Can I Get Better?” for more information on the etiologies of CLD/PTLDS.