To me it looks like chronic Lyme disease research is in a similar dead end as ME/CFS until there is further evidence for or against it being maintained by chronic infections. One way to get a clearer picture is to develop better and more sensitive tests. I'm baffled how difficult it seems to be to develop a good test
The chronic Lyme debate is largely a straw man. When I post on dedicated Lyme forums often I tell patients to leave the chronic Lyme polemics at the door. That well has been poisoned.
Lyme basically has three acknowledged stages. Early or acute, early disseminated, and late stage. There is no dispute about this. If you have persistent symptoms of Lyme and you have had them for more than say six months - technically it could be a lot sooner than that - and you've had the bulls-eye rash or tested positive, you have late stage Lyme. At this point, if you are treated with antibiotics for 2 hours or 2 days or 2 weeks or 2 months or 2 years, and you have persistent symptoms that are caused by Lyme, you have late stage Lyme.
It works very similar to the way syphilis used to. If syphilis got into your brain, you were cooked. Throw all the antibiotics you like at it, that spirochete is nestled in your brain; end of story. Doctors knew this.
Early on, in the late 70's and pretty much the entire 80's, Lyme researchers also knew that a significant portion of patients who contracted Lyme did not improve with treatment. In fact, in the 70's the EIS guy sent to investigate the outbreak of juvenile arthritis in and around Lyme Ct was convinced that the infection had to be viral because the children were not improving on antibiotics.
Once Burgdorfer proclaimed a new spirochete was the causative agent, a wave of trials with different abx washed over the North East US. Results were all over the place. There were a few that showed abx were successful, but they were largely the exception until right before the 90's. Most of the trials showed a significant portion of each cohort failed abx. That ranged anywhere from 0 to 40% to higher. Over time, though, the research community settled in on a 10-20% treatment failure rate.
What's kinda neat if you go back and read those studies, the researchers at that time started calling those cases of Lyme that failed abx, chronic Lyme. In fact, of course, it was late stage Lyme that could not be cured and became chronic. Researchers called it chronic Lyme. Clinicians started to. Patients did,too.
Then market dynamics got a strangle-hold on the research community. The Bayh Dole Act played a big part. All that means is that money got involved in a big way. Diagnostics were big business after the Dearborn MI commission standardized testing. Today it's more than a half a billion dollar market. But the Holy Grail was, and remains, vaccines.
Anyway, that's when you saw the idea of chronic Lyme take a nose dive. Suddenly researchers were saying hard to get, easy to treat. Forgotten were those 10-20% or more.
Meanwhile, key Lyme researchers decided to recharacterize Lyme symptoms. Why? Because they often could not resolve them. They often could not fix them. Overt signs of Lyme like facial palsy or encephalitis or giants swollen knees were categorized as Major Manifestations, while things like extreme weakness or exhaustion or pain or nausea or cognitive decline - these were called Minor Manifestations. Going forward, a researcher could claim patients cured if Major Manifestations resolved, regardless of what was happening with Minor Manifestations. The patient may be bedridden, but no Major Manifestations, no more Lyme.
This was a watershed moment, and its impact is felt to this day. You can have vetted Lyme patients who received abx and who remain sick - even in a research setting - but they are told they no longer have Lyme. These are only subjective symptoms. Everyone has similar symptoms to one degree or another off and on in their lives etc etc.
Ok, but these were/are often validated Lyme patients who remain sick.
So if you're researchers invested in downplaying the Lyme threat, you create a foil. That foil was chronic Lyme. What they say about chronic Lyme is that there is no definition for it. That's silly. What they say about Lyme patients who are told their Lyme has gone chronic is that none of these patients likely ever had Lyme to begin with, and certainly not chronic Lyme because that doesn't even exist - even though there are articles and studies being published to this day that reference that 10-20% failure rate. And yes, clearly many of those chronic Lyme patients test positive on the CDC's 2 Tier protocol. Duh. But the public is not told that.
Which brings us to your point about building a better diagnostic mousetrap. Yes, we need one. We have three FDA approved Lyme metrics and each is an indirect diagnostic. There are good direct tests being developed but the CDC seems intent on fighting them all the way. Again, part of that is because many of these researchers have a finger in that $500,000,000 pie. It's almost as if this indirect testing status quo is preferred. Still there are DNA amplification tests - one in particular is by a guy named Dr. Lee who is suing the CDC. There also are urine antigen tests. There have even been forays into culturing (Advanced Labs). But the push back is swift and hard to overcome.
That's a long-winded way of saying that I doubt any good direct tests for Lyme, with an emphasis on Late Stage Lyme, because that is very different than Early Lyme, will appear any time soon. Early Lyme, yes, that will happen and is in fact quickly becoming a reality, like the urine antigen test I alluded to. But Late Stage? Don't bet on it.
Edit to Add: By the way, there is a slew of case studies of biopsied patients whose biopsies were of tissue samples from brains and hearts that demonstrate Lyme conclusively. But this diagnostic is mainly restricted to autopsies. One in particular is of a woman whose Lyme arc was eerily similar to mine. When she died they biopsied her brain, and it was a spirochete bonanza.
