"Pursuant to their agreement with Blumenthal the IDSA guidelines were reviewed by an independent panel subject to strict conflict-of-interest guidelines and vetted by a medical ethicist. The panel supported the original IDSA guidelines, finding that "chronic Lyme disease" and "post Lyme syndrome" lack clear definitions and convincing biological evidence. Further, the report emphasized that several prospective clinical trials of prolonged antibiotic therapy for persistently symptomatic patients uniformly showed evidence of harm without convincing evidence of benefit.[22] Nonetheless, some groups have continued to criticize the IDSA guidelines after the 2012 review.[23] [24]"

https://en.wikipedia.org/wiki/Infectious_Diseases_Society_of...

Also, see your sibling post by me with info from the CDC. It doesn't seem like they're dismissing the symptoms, they're just saying that antibiotics don't help.

I've watched my mother suffer from this for 20+ years. She initially had a doctor that treated her for 3 years with very strong antibiotics. She made remarkable progress. The doctor left practicing for personal reasons and subsequently she couldn't find good medical help. Her condition deteriorated over the years.

While the CDC doesn't seem to dismiss symptoms, I've watched dozens of doctors dismiss her. I've received calls from dozens of people who all have the same set of symptoms. I've also seen people get better only after years of antibiotic treatment, and slowly at that. My friends in medical school have indicated that they receive about two hours of Lyme-related training during their education.

The issue that you have is three-fold:

1. Ticks often carry multiple infections (Borrelia Burgdoferi, Bartonella, Mycoplasma, and Babesiosis). Each of these infections can leave the immune system in a dysfunctional state. Most studies only focus on treatment of BB, leaving the other infections untouched.

2. Given that, for the toughest cases, years of antibiotics may be needed, it is extremely difficult to keep studies "controlled". i.e. a week long study may not have much variability, but over a two-year study, a lot happens. The noise increases relative to the signal.

3. BB has very high genetic variability. This leads to the potential for larger numbers of strains, with over 200 thought to be in existence.

I'm not contesting that this isn't well-understood. In fact, I fully agree with that. But statements like there is little to no evidence that Chronic Lyme exists are inappropriate. This is an area that has historically been underfunded, and it has a pretty rich history of controversy. We can fight over nomenclature all day long, but that doesn't change the fact that a lot of people are suffering, and the broader medical community is woefully uninformed.

Your "Good summary" is in a journal that's pretty far from what I'd call reputable. The PLOS One article on Rhesus monkeys isn't terribly definitive either - it's a big step between persisting in a host and capable of producing disease without manifesting any laboratory detectable presence.

To jump from "This might be a cause" to "Lets treat people with long term courses of antibiotics, which have known and often severe side effects" is a pretty serious leap in logic.

And I know very few clinicians who would tell someone who believes they're suffering from "Chronic Lyme" that they're not sick. Just that they're not sick in this particular way. Non-specific, widespread inflammatory disease is something the medical community is still struggling to figure out. But antibiotics are fairly nasty drugs for "We have no way of diagnosing this, fleeting evidence for a causal link, and no population-level studies."

Would you agree that a medical journal's impact factor is more important for new research than a summary? I would think that for a summary the quantity and quality of the references is a bigger factor.

As far as the clinicians, having a lot of family experience with the disease, I've seen things far differently. This in addition to support groups, phone calls, etc. We're not going to get anywhere debating experience, just letting you know that it happens a lot.

Honestly no - for a review article, I generally prefer journals with a better reputation. Not necessarily based on Impact Factor, but I'd much rather rely on a non-systematic review from JAMA, Lancet ID, JID, JAMA or PLOS Medicine. Or any one of a number of specialty or society level journals.

I'd rather not rely on an article from an OA factory that's spammy enough for people to wonder if its a scam journal. For a systematic review or meta-analysis I might let it slide, but this was an opinion-y "Review of the Evidence". The somewhat wide ranging stuff the author writes on makes me a little skittish as well.

I'm sorry to hear of your family's experience. I occasionally have my own issues with clinicians.