Draft of New IDSA Lyme Guidelines

https://www.idsociety.org/lymepubli...rPiT88aRyDusccTphiEujvZxA4tV0pFD0b_NIzu1NvVKo



Tens of thousands of Lyme patients might be thrown under the bus unless major changes are made. MUS plays a prominent role.

 

Hindsight will be brutal on all those decisions.

Creating medical guidelines based, above all, on nothing more than "I believe X" and "I don't believe Y". Logical fallacies make for very poor cement in the mix.

The universe doesn't operate based on anyone's personal beliefs, justified by what they want to be true, rather than what actually is.

 

I only saw one reference to medically unexplained symptoms in there, saying that more research was needed.

At the moment there is a problem with people being told that their symptoms are a result of Lyme when there is not good evidence that this is the case.

 

It's where it came up that is so telling. And that it came up at all - remember, this is a US-based organization, and most patients and advocacies will not be as well-versed as to the implications of MUS. They only have till August 10th to come up the learning scale.

There is a larger problem that people are being told their symptoms are not the result of Lyme when they may be. And patients being turned away from treatment that they need because of Bb and company, and denied disability.

 

Agree completely with @duncan - and that MUS is being presented as a unified diagnosis that should be investigated.
The paper said although many "have other diagnosable and potentially treatable disorders, many have 'medically unexplained symptoms' - poorly understood symptom complexes that lack a unified medical diagnosis. Studies to better understand this disorder or group of disorders" are needed.

Where's the science that would demonstrate that ALL the conditions we dont YET understand should be treated as a single disorder or group of disorders. To me, this conveys a mindset that has already dismissed these conditions and likely allocated them to a psychological problem.

 

Setting aside the issue of MUS, I reckon the problematic with chronic Lyme is largely the same as in ME/CFS. ME/CFS often gets triggered by an acute viral, bacterial or other infection by a pathogen, but we still haven't figured out if the pathogen then persists and is responsible for maintaining the disease (seems now unlikely to be the case in ME/CFS). In Lyme disease the trigger pathogen is known (or rather pathogens, because ticks can carry many different bacteria), but what is the evidence to suggest chronic infection of pathogens maintain Lyme disease, rather than it being some form of chronic immune reaction initiated by the pathogen, which could be gone by the time the disease gets chronic. It looks like antibiotic treatment for chronic Lyme is about as successful as attempting to treat ME/CFS with antivirals/antibiotics/immunomodulators, in other words, not much successful.

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 for Lyme, especially as it concerns millions of people. Clearly the current blood antibody tests are insufficient and imprecise.

 

It will have to beware not to be classified as just another "spurious disease" and regarded as being the result of somatisation. Of course, that may already have happened.

 

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.