SCAM SOP. Because it’s all about Them. Peddlers reap wealth and adulation; victims are miserable AF but “vindicated”. Talk about mutual parasitosis.
Let's ignore the research because we don't like the researcher. That's how science works.
The gold standard in microbiology for diagnosing an infectious disease has always been to culture the organism alive. Despite notorious difficulties in culturing Borrelia burgdorferi, in about 30 studies this organism has been cultured alive from patients despite at least standard antibiotic therapy, and in many cases after antibiotics far in excess of what is deemed curative by IDSA and CDC. If the pathogen that causes a disease is still present in conjunction with symptoms compatible with that infection, it would appear to me that the fundamental questions about the cause of long term symptoms should have been answered a very long time ago. To add insult to injury, recent studies from Tulane, Johns Hopkins, and Northeastern University all demonstrate that we can’t even kill Borrelia in the test tube with the currently recommended antibiotics. What are the chances that a second disease of mysterious etiology but with the same symptoms as the first disease, would come and replace the first disease when there is published evidence that the pathogen which causes the first disease persists despite both short and long-term antibiotics? There are numerous chronic bacterial infections which require long-term combination antibiotic therapies: Tuberculosis, leprosy, coxiella endcocarditis, brucellosis, Whipple’s. Why should Lyme be different?
>I would love to see a magic combination of antibiotics that reverse PTLDS symptoms, but decades of high-dose, extended duration antibiotic trials have provided zero benefit to patients, despite the demand.
Let's take the PLEASE[0] study for example. Although significant improvement in health was measured (on average 4.6 points on the SF-36 scale; 3 points is considered significant progress) the results were presented with the headline: 'Long-term use of antibiotics does not benefit long-term complaints of Lyme'.
While tens of thousands of patients have been cured by a cocktail of antibiotics taken for several months or sometimes years. This is also what the current in vitro research is showing. Lyme persisters can only be killed by a combination of antibiotics.[1] Like tuberculosis. And it's also what this data analysis of 200 patients shows.[2]
>We collected data from an online survey of 200 of our patients, which evaluated the efficacy of dapsone (diaminodiphenyl sulfone, ie, DDS) combined with other antibiotics and agents that disrupt biofilms for the treatment of chronic Lyme disease/post-treatment Lyme disease syndrome (PTLDS). ... Conclusion DDS CT decreased eight major Lyme symptoms severity and improved treatment outcomes among patients with chronic Lyme disease/PTLDS and associated coinfections.
And recently we have the spectacular results of Disulfiram.[3][4] A clinical trial is underway at Colombia University so we won't have official results until 2021 but all signs point to it being a game-changer. Lyme communities are full of people with miracle stories after taking Disulfiram. Why would Disulfiram work if the persistent Lyme hypothesis is wrong?
[0]https://www.nejm.org/doi/full/10.1056/NEJMoa1505425
[1]https://www.jhsph.edu/news/news-releases/2019/three-antibiot...
[2]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/
This paper is from Marianne J Middelveen, who is well known for embracing quackery and producing questionable papers.
Her earlier claims that Lyme is a sexually transmitted disease were quickly dismissed, though not before generating a lot of noise in the media: https://www.aldf.com/wp-content/uploads/2016/12/Lyme-Borreli...
She also writes papers about "Morgellons Disease", a delusional disorder in which patients believe threads and fibers from their clothing and other fabric are actually sprouting from within their skin. The condition is universally acknowledged as a delusional disorder, but MJ Middelveen treats it as a real disease with no real evidence.
> I'm not gonna bother digging up the others, honestly not worth my time to try and convince one random person.
This is my least favorite part of discussing Lyme online. So many people are deeply convinced of their chosen narrative that they unquestioningly accept any papers that support their claims, while refusing to acknowledge any evidence to the contrary. This has created quite the market for pseudoscientific researchers to peddle narratives and pseudo-research that meets the demand for what people want to hear.
In the end, it only sets the field back. I would love to see a magic combination of antibiotics that reverse PTLDS symptoms, but decades of high-dose, extended duration antibiotic trials have provided zero benefit to patients, despite the demand.