[vimy]

The research that shows persistent Lyme is real is piling up but the medical community seems slow to accept this fact.

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease: "Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined." https://www.ncbi.nlm.nih.gov/pubmed/29662016

The Emerging Role of Microbial Biofilm in Lyme Neuroborreliosis: "The early treatment with oral antimicrobials is effective in the majority of patients with LNB. Nevertheless, persistent forms of LNB are relatively common, despite targeted antibiotic therapy. It has been observed that the antibiotic resistance and the reoccurrence of Lyme disease are associated with biofilm-like aggregates in B. burgdorferi, B. afzelii, and B. garinii, both in vitro and in vivo, allowing Borrelia spp. to resist to adverse environmental conditions. Indeed, the increased tolerance to antibiotics described in the persisting forms of Borrelia spp., is strongly reminiscent of biofilm growing bacteria, suggesting a possible role of biofilm aggregates in the development of the different manifestations of Lyme disease including LNB." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/

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

Three-antibiotic cocktail clears 'persister' Lyme bacteria in mouse study: https://medicalxpress.com/news/2019-04-three-antibiotic-cock...

In a new study, researchers from the Johns Hopkins School of Medicine have found evidence of chemical changes and widespread inflammation in the brains of patients with chronic symptoms following treatment for Lyme disease. Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET https://jneuroinflammation.biomedcentral.com/articles/10.118...

Disulfiram–breakthrough drug for Lyme and other tick-borne diseases? https://www.lymedisease.org/disulfiram-kinderlehrer/

Obstruction to Treatments Meeting International Standards for Lyme and Relapsing Fever Borreliosis Patients: https://waset.org/Publications/obstruction-to-treatments-mee...

[hycaria]

The biofilm claim surprises me a lot especially in the second one. Honestly their conclusive claim is very far fetched and rather unrelated to their study of the pathways (did you read the paper ?), the journal is very bad (IF of the journal : 3, it's an open access one so you can bet the greatest disruptive papers won't be there), and it seems to me they talk about lyme because their study is on the borrelia family and it makes a shitty paper more interesting.

Third one is great but it's not a randomised trial with a placebo comparison. It has been done before, placebo shows improvement too (see https://www.ncbi.nlm.nih.gov/pubmed/12821733/). It proves nothing.

I don't have time to take at look at the rest, but you get the idea : it's not compelling.

[vimy]

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 these ‘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?

The last link in my previous post is very enlightening in how badly Lyme has been mismanaged so far.

[dumbneurologist]

The best available scientific studies were conducted by conventional medical science, and show there is no benefit. It's telling that, at the time, "long term" treatment was measured in weeks. After it was demonstrated that there was no treatment effect, the goalposts were naturally pushed back by the chronic-lyme advocates, and now it needed to be months.

Test tubes are profoundly inadequate for this kind of study, because the immune system makes a huge difference. Many antibiotics are bacteriostatic (not -cidal), and don't kill the organisms. But that's enough to give the host immune system an edge, and we wipe it out instead of succumbing to the infection.

If there is a benefit to longer treatments, it should be straightforward for the alternative-lyme industry to perform a similar double-blind placebo-controlled trial and prove it.

That's what happened with the "unconventional" example of cannabis for epilepsy, and now it's available to every patient who needs it, and is covered by their insurance. This example just supports the idea that doctors care about their patients, and want effective treatments to be found. When you have a splinter group of doctors who disagree with convention, create a splinter industry on top of it, and market theories rather than publish data, then my default position is going to be skepticism, and I'm going to try to help my own patients find something more promising (though I would never fault them for trying anything: I recognize they are desperate, and the victim of a con is hardly to blame).