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