[danfo]

>It’s so pervasive and creates all kinds of weird dietary and nervous system issues.

I am not an expert, but I think it would be amiss to omit the Lyme disease controversy with these statements. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/

Lyme disease has a simple antibiotic treatment. The Lyme serology test has high false-positive rate. There might be many people who believe they have Lyme disease therefore sadly miss out on their actual diagnosis.

>Even if CLD lacks biological legitimacy, its importance as a phenomenon can be monumental to the individual patient. This is because many if not most patients who believe they have this condition are suffering, in many cases for years. Many have undergone frustrating, expensive, and ultimately fruitless medical evaluations, and many have become quite disaffected with a medical system that has failed to provide answers, let alone relief.

>Many patients referred for Lyme disease are ultimately found to have a rheumatologic or neurologic diagnosis. Rheumatologic diagnoses commonly misdiagnosed as Lyme disease include osteoarthritis, rheumatoid arthritis, degenerative diseases of the spine, and spondyloarthropathies. Some patients are found to have neurologic diseases, including multiple sclerosis, demyelinating diseases, amyotrophic lateral sclerosis, neuropathies, and dementia. Some CLD advocates have argued that these various conditions are simply manifestations of Lyme disease, but these hypotheses are untenable.

[vimy]

This is incorrect. Your link is from 2016. In the last few years several studies have brought to light that persister Lyme is real and very hard to eradicate with standard antibiotics. Even the CDC is starting to change their tune as their website now mentions persister Lyme as a viable theory.

An example: https://www.jhsph.edu/news/news-releases/2019/three-antibiot...

[danfo]

Let's let this rest as 'controversial'. 2020: https://www.amjmed.com/article/S0002-9343(20)30011-5/fulltex...

Even people here in Australia passionately declare that they have Lyme disease (without overseas travel). Our ticks don't even carry Lyme disease...

[vimy]

From the study you linked, first sentence: "Five clinical trials show that prolonged antibiotic therapy has no clear and lasting benefit in relieving posttreatment Lyme disease symptoms, a condition often called “chronic Lyme disease”;1, 2, 3, 4 no evidence of active infection was found in any of these studies by culture or molecular methods."

Almost all those citations are outdated studies from almost 20 years ago and one recent from 2016 where patients _did_ improve with antibiotics according to the data but the abstract concludes they didn't. ¯\_(ツ)_/¯ If they have to ignore recent studies and go back 20 years to "prove" antibiotics don't work then what does that tell us about bias in medicine?

2018: >Conclusions: 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.researchgate.net/publication/324539470_Persisten...

2019: >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.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/

2020: > This study, which drew on a sample of over 3500 patients ... Approximately half (53%) of the patients in the study reported some improvement, and more than a third (35%) were “high responders” to antibiotic treatment, underscoring the value of large samples, subgroup analysis, and real-world evidence as standard components of Lyme disease treatment studies. This spectrum of improvement is consistent with reports for most pharmaceuticals due to patient treatment response variation https://www.mdpi.com/2227-9032/8/4/383

They only test for Borrelia Burgdorferi. We know there are several more out there that cause Lyme symptoms. Borrelia

japonica – Discovered 1994

andersonii – Discovered 1995

lusitaniae – Discovered 1997

bissettii – Discovered 1998

spielmanii – Discovered 2006

californiensis – Discovered 2007

mayonii – Discovered 2016

I'm betting we can add the Australian variant to that list in the future.

[nojito]

If you’re not an expert why would you link a manuscript to stir up a thread?

CLD is real and even if it’s over diagnosed, it still doesn’t take away the many real diagnoses that exist and a vaccine would eliminate its potential permanently.

If you are posting in good faith...more recent studies are centered around making the findings in the European strain viable in the American one.

[danfo]

>If you’re not an expert why would you link a manuscript to stir up a thread?

>CLD is real

Well, I believe the right thing to do is to at least mention that these are controversial statements.

[koheripbal]

This misses that many many people get Lyme disease without knowing it (asymptomatic), particularly children, and if treatment it not given early in infection, permanent neurological damage occurs.

This is common in north eastern state rural areas and has been getting steadily worse.

We are constantly doing tick checks on the kids after one of our friends related that she suffered lifelong issues after being bitten by a tick 40 years ago in our neighborhood.

A vaccine would be a huge relief.

[ahelwer]

And in turn this misses that chronic lyme has become a catch-all self diagnosis people have for chronic medical problems with no clear cause. There is not really much evidence to believe it is a real thing.

[StavrosK]

To clarify, you're saying we don't know whether Lyme disease is real?

[ahelwer]

Lyme disease is different from chronic lyme disease. The latter has little evidence.

[ed25519FUUU]

I still think it’s worth. The amount of life lost to people with chronic Lyme is significant, even if the number of infected is low.

[miskin]

But as the parent explained, many of these chronic Lyme patients may be just misdiagnosed. They believe they have Lyme, but the problem is some other disease.

[henearkr]

If chronic Lyme illness is caused by lingering bacteria hidding in the body's tissues, the real way to eliminate any doubts about alternate causes is precisely to get a Lyme vaccine. Then, if the symptoms persist, we could easily deduce that the cause is other.

Except that one thing... the chronic Lyme could very well caused by an autoimmune side-effect (this is among the most serious explanations), in which case I don't think the vaccine would help.

[KraftKacke]

I don't think that's a very scientific approach as a vaccine may have other effects on the symptoms.

Finding lingering bacteria would be the right call. Autopsy or biopsy. And then get better testing, less "false positive".

With no specific (set of) symptoms, symptom based evidence seems inherently weak.

[atian]

Bacteria is latent. CFS is not not strep throat. Generally body-wide immune dysfunction is present.

https://pubmed.ncbi.nlm.nih.gov/19393200/

[monopoledance]

Yes, but we're interested in the _causal relationship aren't we?

I don't see how the linked article contributes to your argument.

Tho, it's an interesting read and a warning to those supplementing vitamin D like it's the solution to everything.

[henearkr]

This potential role of vitamin D is very exciting!

[OskarS]

There is no way to eliminate these doubts. If you made a magical cure that totally eliminated the bacteria that causes Lyme disease, then these patients would take it, and it would almost certainly not work (because "chronic Lyme" isn't a real syndrome, and these patients don't have this bacteria). However, that would not convince them, they'd just claim that the medical establishment has failed them yet again (or worse: they become anti-vaxxers). You can't treat fictitious diseases with real drugs.

[henearkr]

People are not making up illness for the fun of it. Their ailments are very real and they have a cause.

Malingering exists, but the profile of the chronic Lyme patients you speak about is not at all the one of persons in need of being nursed by the society like babies...

Just imagine you go to the doctor and all you say is dismissed because he thinks you make it up? What a despair you would be in! Speaking of a closed logical system your physician would be in! The same kind as the ones making famous conspiracy theories.

"I had <insert illness> and I was not taken seriously for <X> years" is such a recurrent theme that it is very concerning.

Just recently, the "long covid" was very much mocked by smug doctors. Imagine the distress of the patients.

You're wrong, these patients just failback on Lyme as a default and would be very pleased to discover the real causes of their ailments if it was found. To suppose that people are that much irrational and to generalize to this extent is... sorry but I am shocked.

In medicine, a golden rule is always assume your patient is honest in describing his problems.

Finally, contrary to what you said, the problem is not outside of the real world. Just as a link was proved between some tickborne pathogens and red meat allergy, you cannot exclude that one day a scientific team would prove that under some conditions the borreliosis provokes an autoimmune illness. And such a study would most likely point towards chemical markers to look for in blood and, at last, be able to diagnose it with certitude.

[OskarS]

> People are not making up illness for the fun of it. Their ailments are very real and they have a cause.

I have absolutely no doubt that their problems are real. I fully believe that these patients are honest and that they really suffer, and they need treatment. I do not believe at all that they are "making it up".

But they don't suffer from "chronic Lyme".

There's just no evidence that it's a real thing. But just like with electromagnetic hypersensitivity, Morgellon's disease, "Wind Turbine syndrome", or any of a legion of "diseases" from medical history, you can't treat them medically if there's no evidence they exist. It would be malpractice for doctors to prescribe real drugs for fictitious syndromes, and it wouldn't do anything to convince their patients either.