What It’s Like to Live With a Tick-Borne Disease, NYT

Chronic pain, fatigue, rashes: As tick territories are expanding, so too are the number of illnesses they cause.

https://www.nytimes.com/2023/07/24/well/live/tick-lyme-disease.html?unlocked_article_code=idnb5aEi0CPtAWIjOtkuXRTUZiE-fhW88nwJp0yvNgvt2l8l4Bx5ViNN5YQM8W0LPKSENib3DiXKtM0hmSnn2lyPyZRYKOpyPwEvs84bxyMzKLQucqTMIteXfxq4h7wxWaVLdV_2PS6nYePRHNcTNyj9hGZLEVkFmP6tYq76cuozsZCGtYJfNw7IOxrIgZ69MZIP9HU3SQyfNcov_Y-txhIPN5yB1SJyhDSYhwECynQgIElzI8DCFva6156LpkPmNXLmtJqduKahxDU_ddb5iddgVYYeNDXMlK-Av-vcLAD7MZSZYIIGQ6b5uFNYxQqN4ruQ419uoAQDDB-aGw&smid=url-share

Note gaslighting of female patient.

 

Lyme Disease is pretty nasty. I got it once, years before I got ME. There was no bullseye rash and the symptoms came one after another--I didn't seek treatment immediately because the symptoms didn't appear to have a common cause. At different points, I had cold-like symptoms and dizziness, widespread allodynia, and Bell's Palsy. The Bell's Palsy left me with slight nerve damage.

Chronic Lyme doesn't deserve to be controversial. There's a lot of skepticism because people assume the only possible cause of symptoms is continuing infection, so if the infection is gone, it's impossible to still be ill. But we know other infections can cause serious illness and depart. Thus it's entirely sensible that "chronic Lyme" is actually "post-Lyme." To make it worse, there are also cases of "true chronic Lyme" where someone stays infected for a year or longer without getting treated.

 

Frequently, it's living with tick-borne diseaseS. It's rapidly become a package deal.

As for whether or not a Lyme infection is actually gone, there is literally no way to know. None. An embarrassing failure.

You also have to deal with more prevalent incidence of failed treatment when not treated in acute phase, and seronegative Lyme, which has been a thing since the early days of Bb diagnostics back in the 80's.

As for the notion of chronic Lyme, that bit the dust in terms of acceptability as soon as the vaccine tail wagged the Lyme dog.

 

Wouldn't the possibility of debilitating sequelae make vaccines more attractive?

 

Yes. But as is frequently the case with ME/CFS, things can get complicated very quickly in Lymeworld.

First, when I talked about a vaccine wagging the Lyme dog, I was referring to reports that diagnoses of chronicity with Lyme might interfere with getting vaccines approved. As I understand it, even though there are plenty of respected studies that popped up in the 80's that reported on - and acknowledged - chronic Lyme, distance had to be established for a vaccine to move forward, at least purportedly. The whole "hard to get, easy to cure" thing was promoted. A very restrictive case definition was crafted. Etc. etc. The point is, supposedly the allure of a Lyme vaccine helped changed the trajectory of how Lyme would be perceived.

It's a lot more complicated than that, but it does seem to play an important role.

To return to your question, if you've had Lyme & Company, odds are you'd advocate for a vaccine. But if you've been exposed to the details of the first vaccine, you'd likely be wary. Doesn't mean you wouldn't want a vaccine, only that you'd want to know it were safe.

And that's where it gets complicated, again, and I don't want to burden anyone with that stew. Suffice it to say that I know a bunch about Lyme history and I still cannot figure out if I'd take the vaccine yet even though I'm surrounded by all sorts of ticks and I'd sorely love a safe vaccine.

 

Here comes Natalie!!

https://twitter.com/user/status/1683571261497065473


https://twitter.com/user/status/1683722188694904832

 

People like Natalie cast doubt on these illnesses to justify their own horrible behavior towards patients. Behavior that is presumably driven by negative attitudes towards chronically ill people.

 

"There's "no evidence " debilitating but common symptoms she's had for 15 years are driven by Lyme."

Well, technically not correct, if I'm reading the article right. She did test positive for Lyme, which is a form of evidence (can you imagine if she'd tested negative what people would say if sh'ed gotten a Lyme diagnosis even though it's supposed to be a clinical diagnosis?). Many of her symptoms generally concord with widely accepted symptoms of Lyme, although not necessarily conventional IDSA-promoted ones. She lived in an established Lyme endemic area.

So while there is no definitive proof that Lyme is causing any of these these symptoms (I wonder who we have to thank for that?), there is evidence suggestive that Lyme could be behind at least some of the symptoms.

 

Natalie has pinned her most egregious article at the top of her Twitter feed. Criticise a journalist, and the thin-skinned creatures turn into fully fledged anti-patient activists.

 

Oh, I read about the Lyme vaccine. A bunch of people blamed the vaccine for common symptoms with no proven connection to the vaccine, and the manufacturer took it off the marker because it wasn't a popular enough product to fight over it. Pretty depressing.

 

I've read that version as well.

Speaking of depressing, using the word "proven" in a Lyme context is dicey usually even in the most stalwart studies.

It shouldn't be that way after half a century.