For more info on Lyme and related difficult to identify diseases, NYT columnist Ross Douhat wrote a book about his experience w/ Lyme and his ongoing adaptations. It's called...
The Deep Places: A Memoir of Illness and Discovery
New studies offer insight into Lyme disease’s treatment, lingering symptoms
41–50 of 166 posts
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#42Earlier quoted context omitted.
"long Lyme" isn't well defined, but you're probably thinking of chronic lyme [1]. This article refers to PTLD. The distinction matters. Chronic lyme is quackery that encourages people to pursue aggressive long-term antibiotic treatment for a non-existent persistent bacterial infection. Often these are people who have never been infected with Borrelia in the first place. The article directly contradicts the persistent…
Agreed. Long Lyme certainly exists. I appear to have it as do numerous acquaintances. I wrote "appear to have it" because a blood test for Borrelia returns negative. However, just two weeks ago a doctor told me that Borrelia can evade a blood test by infecting the nervous system. That was news to me so I found this from NIH in the USA. https://pmc.ncbi.nlm.nih.gov/articles/PMC8870494/ Borrelia can cross over to the C…
What symptoms? How can you say your symptoms are from long Lyme, and not something else, or just getting old?
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#43This 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 "Chronic Lyme" diagnoses were either self-diagnosed from the internet or diagnosed by uninformed primary care doctors who used it as a catch-all for symptoms they couldn't diagnose. Many had never received positive test results, or they had received positive test results from cash-pay alternative medicine labs who used their own in-house alternate tests.
It was really depressing to hear stories about people who had been misled into spending tens or hundreds of thousands of dollars on things like year-long courses of expensive, IV antibiotics for a condition they most likely did not have. Even the idea of a persistent infection hasn't held up to scrutiny. The current line of thinking is shown in this article, where persistent particles of past infection might cause ongoing immune-related symptoms. Those symptoms would not respond to the high-dose, long-term antibiotic therapy pushed by the alternative medicine Lyme treatment providers, obviously.
So while it's a difficult topic, having some better mechanism to separate the verified Lyme cases from the self-diagnosed or those wrongly diagnosed is actually very important for improving acceptance of the condition. It's tragic that many with persistent symptoms of true Lyme infections have been dismissed, but it's also tragic that many with non-Lyme conditions have been misled into thinking that "Chronic Lyme" is the explanation for all of their problems contrary to the evidence. Getting the latter group out of the "Chronic Lyme" mindset and on to a path where their true underlying condition can be addressed, whatever it may be, is a win for them.
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#44I 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-…
My kid contracted it from a tick bite while camping in Ontario; it showed as joint pain in the legs that would come and go for like a week at a time. Made it tough to explain to the doctors as by the time we'd get there, he'd be fine again.
In the end it was four weeks of doxycycline— that was several months ago and it doesn't seem to have recurred, thankfully.
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#45Earlier quoted context omitted.
"long Lyme" isn't well defined, but you're probably thinking of chronic lyme [1]. This article refers to PTLD. The distinction matters. Chronic lyme is quackery that encourages people to pursue aggressive long-term antibiotic treatment for a non-existent persistent bacterial infection. Often these are people who have never been infected with Borrelia in the first place. The article directly contradicts the persistent…
Agreed. Long Lyme certainly exists. I appear to have it as do numerous acquaintances. I wrote "appear to have it" because a blood test for Borrelia returns negative. However, just two weeks ago a doctor told me that Borrelia can evade a blood test by infecting the nervous system. That was news to me so I found this from NIH in the USA. https://pmc.ncbi.nlm.nih.gov/articles/PMC8870494/ Borrelia can cross over to the C…
> I wrote "appear to have it" because a blood test for Borrelia returns negative. However, just two weeks ago a doctor told me that Borrelia can evade a blood test by infecting the nervous system.
The theory of persistent infection hasn't really held up. There were a few researchers who claimed to have some evidence, but it hasn't really been replicated. It's largely been dismissed from mainstream research.
Sadly, it's still a favored theory in many alternative medicine communities. It's also a really contentious topic. There's a long history, including Lyme researchers leaving the field after receiving death threats following publication of research that didn't agree with the alternative medicine theories.
> That was news to me so I found this from NIH in the USA. https://pmc.ncbi.nlm.nih.gov/articles/PMC8870494/ Borrelia can cross over to the CNS. Lovely.
To be clear, that article is about CNS penetration of the infection, not persistence of the infection.
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#46I 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-…
A couple of years ago I had about 10 tick bites and one of them resulted in the signature bull’s-eye rash. Thankfully, I was aware of the ticks and I was checking for the bull’s-eye rash to appear and it got treated with doxycycline.
Many people face symptoms months after the bite or they might not remember getting bitten by a tick so it’s common that it is misdiagnosed and they get all kinds of ineffective and / or unnecessary meds, so I added it to my “list of illnesses to check” in case I ever get unexplainable neurological issues, fatigue and joint problems.
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#47It is kinda funny that humanity can kills entire species like the dodo while cannot eradicate a bacterium like Borrelia.
Borellia bergdorfii does not taste like chicken.
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#48I 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-…
A couple of years ago I had about 10 tick bites and one of them resulted in the signature bull’s-eye rash. Thankfully, I was aware of the ticks and I was checking for the bull’s-eye rash to appear and it got treated with doxycycline. Many people face symptoms months after the bite or they might not remember getting bitten by a tick so it’s common that it is misdiagnosed and they get all kinds of ineffective and / or…
> was checking for the bull’s-eye rash to appear
Note that the absence of that wouldn't mean you didn't get lyme disease.
Where I live, most of the ticks carry lyme disease, yet not that many people get infected: if you pull it out quickly, you greatly reduce the chance of getting infected. Of the people I know, perhaps 20% had lyme disease (and knew about it, I must add).
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#49I 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…
Do you have trouble reading other people's emotions?
Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms
#50On a related note, the Trump administration frozen more than $790 million in federal funding for NU because of "ongoing federal antisemitism investigations": https://dailynorthwestern.com/2025/05/05/lateststories/by-th...