Live data from Hacker News

New studies offer insight into Lyme disease’s treatment, lingering symptoms

news.northwestern.edu

81–90 of 166 posts

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#81

I contracted Lyme disease while on vacation in Cape Cod last year. The first symptom was left-side facial paralysis, which my physician diagnosed as Bell's Palsy, so I spent two weeks on steroids before we figured out the real issue. Three weeks of doxycycline cured the Lyme but left feeling pretty wrecked for more than a month afterwards! I seem to have avoided the chronic symptoms some people experience, but a low-…

Just to be pedantic, Bell's Palsy is the name of the condition not the cause. So it was Bell's Palsy caused by Lyme disease. I have noticed that the line between condition and cause is often overlooked, even by doctors. For example this leads to people thinking Pinkeye/conjunctivitis is highly contagious, when it is still conjunctivitis if it is caused by getting something in your eye. I think that holds for everythi…

Much of being a physician is pattern recognition - the vast majority of Bell's Palsy is idiopathic (generally viral), and thus that's how we usually treat it. If we tested everybody for everything everytime the health system(s) would collapse.

It definitely helps as a patient to advocate, and add anything that a physician like myself maybe wouldn't always ask, like if you've been a tick-infested area and/or discovered a tick attached to yourself recently.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#82
post #13

This is amazing and really needed in the northern US and Canada. It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid). Their theory of it being bacterial remnants in the liver is validating.

> It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid). I have a friend who worked in research for rare, chronic, and misunderstood diseases for a few years. Post Treatment Lyme Disease Syndrome (PTLDS or just PTLD) is well accept by now. The problem they encountered was that so many of the people who presented with…

This. It's been very hard to separate out "Chronic Lyme Disease" as an unfalsifiable self-diagnosis from "Lyme Disease That Which Has Chronic Sequelae", which is fairly well accepted by most infectious disease doctors I know.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#83
post #26

> Northwestern scientists identified that piperacillin, an antibiotic in the same class as penicillin, effectively cured mice of Lyme disease at 100-times less than the effective dose of doxycycline. Would be nice if it translates to humans. > The authors argue that piperacillin, which has already been FDA-approved as a safe treatment for pneumonia, could also be a candidate for preemptive interventions for those pot…

As someone allergic to doxycycline (was given it as a kid, had a huge rash all over my body), that sounds helpful if I ever need it.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#84
post #52

My mother got a tick bite and felt off and the doctor told her she had allergies and sinus infection due to high pollen. Luckily my younger brother is a physician and told her to go back and ask for a Lyme disease test. They said okay but said Lyme disease is really rare and wasn’t necessary. Long story short she was positive but was caught early enough that 30 days Doxy was all she needed. That same year I was bitte…

Why have I heard so many stories of doctors not wanting to diagnose something as Lyme disease?

The majority of doctors I've interacted with, with a low-single-digit number of notable exceptions, seemed to estimate their own intelligence at about 1 or 2 stddev higher than it actually was. Combine this with (I imagine) a large number of legitimately stupid and/or hypochondriac patients, and you have a recipe for really shitty diagnostics.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#85
post #13

This is amazing and really needed in the northern US and Canada. It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid). Their theory of it being bacterial remnants in the liver is validating.

I had an interesting run-in with chronic (-ish) illness. I got some random flu-like virus in late 2019 (I don't think it was covid, although I was living in HK at the time). Whatever it was, it really screwed me up and left me with a bunch of weird symptoms (e.g. dizziness/vertigo) that had me pretty incapacitated for a few months.

Thankfully the symptoms abated eventually, but doctors couldn't really find anything and none of the diagnostic tests turned up anything that interesting. Ultimately they thought it was probably minor viral encephalitis, but the diagnostics for this are quite bad, so no confirmation either way.

You can't really convince doctors that you're not the kind of person with a propensity for imagined symptoms (probably a lot of hypochondriacs tell them that), so there's not really anything you can say to argue when a doctor implies you're just imagining things.

That and other experiences made me realize:

A) diagnostic technology is really quite poor (e.g. at the time, only one lab (one of the UC schools, I forget which) was even theoretically capable of testing for encephalitic viruses outside of 2-3 very common ones, and all of the tests had ridiculous limitations on e.g. sensitivity window)

B) most doctors really overestimate their own intelligence, and they act accordingly

C) you and your friends/family are the only ones who (can afford to) actually care about and put serious effort into your medical outcomes. If you actually want to get good medical results, you basically just have to diagnose yourself and convince some doctor to go along with it without triggering their sense of superiority

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#86

Earlier quoted context omitted.

Why have I heard so many stories of doctors not wanting to diagnose something as Lyme disease?

Doctors are trained to be arrogant, dismissive of unknown unknowns, and with a terrible understanding of statistics. Add to that: - They have a lot of patients and not enough sleep. - They need to pay back a huge student loan. - They hold terrible responsibilities and risk being sued. - They don't have much time for themselves, let alone update their knowledge. - Most patients are overreacting idiots, so it's a winni…

I would say, it depends. I also have a lot of colleagues who overtest out of paranoia and risk avoidance.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#87
post #52

My mother got a tick bite and felt off and the doctor told her she had allergies and sinus infection due to high pollen. Luckily my younger brother is a physician and told her to go back and ask for a Lyme disease test. They said okay but said Lyme disease is really rare and wasn’t necessary. Long story short she was positive but was caught early enough that 30 days Doxy was all she needed. That same year I was bitte…

Why have I heard so many stories of doctors not wanting to diagnose something as Lyme disease?

American doctors are also reluctant to do rabies shot. Yeah they are expensive, the risk is low and there are ways to rule it out, but I'd rather not die. Other countries can get them anywhere for cheap. Here...thousands of dollars in the ER. One reason could be its just not administered enough. The other is, for profit American medical system because no one wants to die.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#88

I contracted Lyme disease while on vacation in Cape Cod last year. The first symptom was left-side facial paralysis, which my physician diagnosed as Bell's Palsy, so I spent two weeks on steroids before we figured out the real issue. Three weeks of doxycycline cured the Lyme but left feeling pretty wrecked for more than a month afterwards! I seem to have avoided the chronic symptoms some people experience, but a low-…

Doxycycline is my favorite antibiotic and the most effective against chronic sinusitis and chronic prostatitis for me. I only take it maybe once a year, but it does wonders for a good long time. It also cured my nearly lifelong IBS-D about a decade ago. I had a small re-occurrence of IBS-D last year after so many years without it. I was able to convince the doc that it fixed it for me in the past, so he prescribed me…

That’s wild that it had that effect for you with any form of IBS. I know two people with Crohns where it set off and irritated their systemd for months.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#89
post #52

My mother got a tick bite and felt off and the doctor told her she had allergies and sinus infection due to high pollen. Luckily my younger brother is a physician and told her to go back and ask for a Lyme disease test. They said okay but said Lyme disease is really rare and wasn’t necessary. Long story short she was positive but was caught early enough that 30 days Doxy was all she needed. That same year I was bitte…

My wife got a tick bite in Indiana. Went to Wisconsin shortly after, and developed bullseye rash. Went to clinic and they told her she couldn’t get Lyme’s in Indiana. She insisted on a test. Positive. Doxy cleared it.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#90

How strange that scientific research just like this has become extremely political. Case in point: The Trump administration has cut Northwestern off from over a quarter billion dollars in funding because of "anti-semitism." Note, that the vast majority of this money is for research just like the one linked in this article. Of course, people seem to be arguing about anti-semitism more than cutting off funding for rese…

I was listening to an interview with Adrian Tchaikovsky the writer and his theory was conservatives have a love/hate relationship with sciences (and arts and academia). Paraphrasing from memory - if some thing or someone reinforces their belief system they love it, and they despise it when it contradicts them, this effort against science is to get a reality (scientific results) to agree with their preconceived notions. The bonus is suffocating dissent of any kind against those in power. The context was this was about his book about exobiology and authoritarian governments, Alien Clay.

Anti-semitism is just the convenient cover, likewise pro Palestinian protesters are judged to be interfering with USA international relations (wrt Israel) by the Secretary of State under one clause of Immigration and Nationality Act that they use to justify legal immigrants to be kidnapped and deported.

Post reply on HN