And the Band Played On

June 1, 2016 1:20 PM

"One in 100 Americans will contract Lyme each year, and many of them develop multiple sclerosis-like conditions following prescribed treatment. Patients are desperate, many going bankrupt trying to find help for their disabling condition. They are met with silence. Sometimes even with laughs." A plea for awareness and funding by David Michael Conner.
posted by Anonymous (18 comments total)

There was a lyme vaccine, but apparently it was pulled from circulation due to anti-vaccine fears. Now there is just the canine vaccine available.
posted by tfinniga at 1:33 PM on June 1, 2016

My assumption here is that Lyme has not been treated the same because it does not transmit human to human (at least that's what Wikipedia says), which AIDS and Zika do. You have to get bitten by a tick, so focus for most people is on prevention via that route. It also might shorten your life but does not kill quickly, so it becomes a lower priority.

Which doesn't excuse ignoring people who are suffering.
posted by emjaybee at 1:34 PM on June 1, 2016

I know someone who suffers from this. I feel bad for him. He was house bound and mostly bed ridden for the better part of 15 years. For the first 5 years he had no clue what was wrong, then figured it out spent the next 5 years trying to treat it. Around year 10-11 he was at the point that he could have guests over and stuff but it was just sad to see how much of his potential, his health and home had succumbed to the illness. He's maintaining so-so now but Lyme has made a permanent mark on his life from which he will never fully recover.
posted by Annika Cicada at 1:40 PM on June 1, 2016 [1 favorite]

This history of the Lyme vaccine.
posted by grumpybear69 at 1:41 PM on June 1, 2016 [2 favorites]

One in 100 Americans will contract Lyme each year

What? The CDC says the total incidence in the US in 2014 was 7.9 per 100,000, or .0079 per 100.

It's possible those statistics are significantly undercounting, but there's a limit to plausibility. For comparison, influenza has a total incidence of 65.5 per 100,000, or .065 per 100. If Lyme disease affected one in 100 Americans per year, it would be 15 times as common as the flu. Half the population would contract it in their lifetime. That's so obviously not the case that it seriously undercuts the rest of the author's arguments.

I don’t know how to make this plainer: Lyme disease is the AIDS of our time.

I'm pretty sure AIDS is the AIDS of our time. There are 50,000 new HIV infections every year in the US, twice the number of Lyme disease cases. The mortality rates are also wildly different. Lyme disease kills perhaps 30 people per year in the US, whereas AIDS kills almost 7000 people per year.
posted by jedicus at 1:43 PM on June 1, 2016 [21 favorites]

I got bit by a tiny little tick the other day so this is doing awesome things for my general level of anxiety.
posted by brennen at 1:45 PM on June 1, 2016

CDC says it estimates 300,000 diagnosed in a year, which would be more like 1 in 1000.

Thats still much higher than I thought.
posted by thefoxgod at 1:46 PM on June 1, 2016 [1 favorite]

Aren't we talking about chronic lyme here? Isn't that pretty controversial, as far as even existing. Is this just more woo peddling from HuffPo?
posted by amcevil at 1:46 PM on June 1, 2016 [5 favorites]

jedicus --- your stats are "reported", but the CDC says there is a big difference between diagnosed and reported cases. So they have around 30,000 reported cases (1 in 10,000 ish) but estimate real number is more like 300,000.
posted by thefoxgod at 1:47 PM on June 1, 2016

I don't deny that this is a thing, but it's so weird to me that people have such difficulty getting doctors to treat them for Lyme. When I had it (with no telltale bullseye mark, just general crappiness combined with living somewhere that has a lot of deer ticks) getting it dealt with was really simple. I went to the doctor, said "I feel terrible, I think it might be Lyme," and the doctor ran a blood test. My titer was high, so I got put on amoxicillin. End of story.

Now obviously I was lucky to have caught it early, and to have avoided any lingering effects. But I've always known that they were a possibility especially in more advanced cases, and my doctor did too. He wouldn't have laughed at me if I'd come in down the road showing signs of a recurrance, that was on the table from the beginning. It's common knowledge around here that Lyme can fuck you up for life, though maybe that's just because I live somewhere where it's really prevalent? But who are these doctors who don't know that, and who ignore patients who bring up the possibility? It's not some weird fringe idea, chronic Lyme disease has been an established medical condition for as long as I've been alive.
posted by Anticipation Of A New Lover's Arrival, The at 1:49 PM on June 1, 2016

I have dear friends who have suffered terribly from Lyme disease and being in the middle of what feels like an epic, inexplicable health decline myself I am incredibly sympathetic to anyone suffering without support, without help, without a solution. But the framing of the article from the title to the very end that Lyme disease = AIDS is just... incredibly off-putting? Maybe I'm coming from a place of ignorance and denial and in ten years I will laugh at myself for being so short-sighted but really? AIDS?
posted by kate blank at 1:49 PM on June 1, 2016 [3 favorites]

Yes --- chronic lyme disease is controversial. Most cases are easily treatable. And some patients will have a few months of problems according to CDC, but not years.
posted by thefoxgod at 1:50 PM on June 1, 2016

your stats are "reported", but the CDC says there is a big difference between diagnosed and reported cases. So they have around 30,000 reported cases (1 in 10,000 ish) but estimate real number is more like 300,000.

Fair enough. That still leaves the author's numbers off by a factor of 10.
posted by jedicus at 1:50 PM on June 1, 2016 [1 favorite]

Lyme disease is definitely real, but yeah, chronic lyme disease is more controversial. I also note from a quick google search that Mr. Conner has written a lot of articles about it.
posted by yhbc at 1:52 PM on June 1, 2016 [1 favorite]

I had Lyme disease in my teens and have some ongoing post-Lyme neurological stuff. I wasn't diagnosed until quite late, when I already had pretty dramatic neurological symptoms.

I don't know about Lyme being the AIDS of our time, though - with HIV/AIDS, if you don't get treated you die. Everyone does (with very, very, very, very rare exception). With Lyme, it is the very, very, very rare exceptions who get the grave, ongoing illness.

I was very skeptical about chronic Lyme, but Leslie Feinberg sure did die of some kind of chronic illness, and felt that it was Lyme-related. That doesn't prove anything about chronic Lyme per se, but Feinberg's ill health was very physically present and obvious in the years before their death.
posted by Frowner at 1:53 PM on June 1, 2016 [1 favorite]

Fair enough. That still leaves the author's numbers off by a factor of 10

Indeed. And more importantly, the vast majority of those people will be cured by antibiotics with no lasting consequences. The exception would be those who develop PTLDS (which is similar but different to the claims made in support of chronic lyme disease).
posted by thefoxgod at 1:56 PM on June 1, 2016

Rural Pennsylvanian here. I know people who have had Lyme... fortunately, people who caught it early and are more or less cured. Friend works in a veterinary office -- 75% of the dogs that come in there test positive for Lyme. I've treated my horse and my friend's horse for Lyme (Some vets deny horses can get Lyme. Some vets admit horses will test positive for Lyme but say it "doesn't affect them". Some vets are willing to write a script for doxy so that you'll shut up and go away. I dunno if the horses we've treated for Lyme actually HAVE Lyme or if they just tested positive at the exact same time that they were Not Quite Right and magically just went back to Totally Right after a course of doxy due to the magical placebo effect of doxycycline or whatever. Perhaps they were NQR with some other doxy-killable germ and the Lyme titer was just a coincidence? Dunno. But if I get another Not Quite Right horse whose Not-Quite-Rightness looks the same as the first two, we're getting a script for doxy to see how that goes.)

Guess what I'm trying to say is there's a lot of Lyme in the out of doors here in Greater Rednecklandia and if you spend time in the out of doors in Lyme-friendly locations and subsequently develop a rash or symptoms, try to think Lyme and seek treatment in a prompt fashion.
posted by which_chick at 1:56 PM on June 1, 2016

Lyme disease is the AIDS of our time

A controversial claim that is in no way backed up by the article. [Also, incredibly offensive. You'd also think that a medical journalist in 2016 would know not to use HIV and AIDS interchangeably, but I digress...]

Using phrases like "medical establishment" as a pejorative isn't helping his case either.

I don't doubt the sincerity of the people in the article who describe having debilitating chronic health conditions, nor do I discount the increased incidence of these symptoms in former Lyme patients.

However, insisting that you have Lyme disease does not mean that you have Lyme disease, and this article gives very little attention to the idea that these people might be experiencing some other health condition, instead choosing to cast the victims as some sort of inexplicably-repressed minority.

Sorry. This hits a little close to home. I was subjected to a battery of painful and invasive medical tests (including a spinal tap) by my parents when I was a child, because they were convinced that I had some sort of chronic or neurological variant of Lyme disease. They were taken in by pseudoscientific literature such as this article. The disease that I was being tested for has no basis in science or established medical literature, and yet my parents were desperate to send vial after of vial of my blood around the country, in search of a lab that would return a positive diagnosis.

In the end, I was fine. My overall health had changed, but it was because I was going through puberty.

This kind of woo has incredible influence in suburbia, though. In one of the stranger footnotes to the 2012 Presidential Election, Mitt Romney's campaign tried to use Lyme as a wedge issue in Northern Virginia.

It's ironic that the author doesn't consider that articles like this one are the very reason why doctors turn a skeptical eye towards patients who come in claiming to be experiencing Lyme symptoms. Antibiotics should not be distributed freely, and many of the symptoms may be indicative of other, more serious conditions.
posted by schmod at 1:58 PM on June 1, 2016 [12 favorites]