Re: Filed under: Reason #318 to Hate Humanity

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If I'd have known this was coming, I'd have baked a cake.


Posted by: Opinionated Jenny McCarthy | Link to this comment | 06- 5-15 7:51 AM
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My mom worked on the trials for that vaccine- it wasn't great, took several doses to reach full effect and still was only about 70% effective (possibly higher in kids.) Still better than nothing.
If you really want to ruin your day look up Powassan virus from deer ticks- nowhere to run if that becomes widespread (the optimistic view is that is already is widespread and the really bad symptoms are only in a small number of people.)


Posted by: SP | Link to this comment | 06- 5-15 7:57 AM
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Ugh. I just learned that a friend has Lyme. Thanks, dumbasses!


Posted by: nosflow | Link to this comment | 06- 5-15 8:01 AM
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Is there any way to vaccinate the deer? Maybe with bait stations or something. That's the reservoir, right?


Posted by: Moby Hick | Link to this comment | 06- 5-15 8:01 AM
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2: You don't think it would have been improved over the past 15 years?


Posted by: heebie-geebie | Link to this comment | 06- 5-15 8:02 AM
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You don't really improve a vaccine (maybe change regimen) you make a new one that's better. Sure, that might have happened, depends on market performance and insurance reimbursement.
4- actually it's the mice that are pools for the bacteria for Lyme, don't know about powassan. So what you do is leave out cotton balls with insecticide that the mice use for nesting which kills the ticks.


Posted by: SP | Link to this comment | 06- 5-15 8:10 AM
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The marketing department decided "deer tick" sounded better?


Posted by: Moby Hick | Link to this comment | 06- 5-15 8:12 AM
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6 is right. The deer ticks undergo larval stages when they live on small animals instead of deer. Some wild rodents are found with lots and lots of ticks on them.


Posted by: Cryptic ned | Link to this comment | 06- 5-15 8:14 AM
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6: Maybe you don't.


Posted by: heebie-geebie | Link to this comment | 06- 5-15 8:14 AM
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Make sure to read the comments on that article.

Anti-vaxxers and chronic lyme disease advocates! Yay!


Posted by: MHPH | Link to this comment | 06- 5-15 8:36 AM
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MHPH just beat me to it. Those comments, yeesh!


Posted by: Barry Freed | Link to this comment | 06- 5-15 8:43 AM
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JFC, anti-vaxxers. My aunt just got Lyme disease--for the second time!--and has been pretty much knocked out for the past week. Nasty, and unnecessary? C'mon.


Posted by: dalriata | Link to this comment | 06- 5-15 9:02 AM
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So I have a question about Lyme disease. (I had Lyme disease when I was 13! I have a few lingering effects! I was partially paralyzed for several weeks! But my question is about something else!)

So I'd always believed that "chronic Lyme" was nonsense, and was sort of surprised when Leslie Feinberg claimed to have it. I figured that this was just one more person on the left who was unfortunately susceptible to woo, no matter how admirable they might be in other ways. (Feinberg requested "she" pronouns for her obit IRRC so I am using them going forward.) But she died of something, fairly young. Obviously "she died of something that everyone said was complications of Lyme" doesn't prove anything. But I'm curious as to what could have been going on.


Posted by: Frowner | Link to this comment | 06- 5-15 9:42 AM
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That's kind of a fraught area, isn't it?


Posted by: Moby Hick | Link to this comment | 06- 5-15 9:48 AM
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I think the fact that lyme disease really does have long term/lingering consequences is a large part of the chronic-lyme-disease nonsense.* It's a lot easier to hear "you have a chronic infection that we can manage with constant doses of the medication that we used to treat the initial infection" than "yes that's how things are going to be for you from now on," especially when 'how things are for you now' really is pretty bad. And when there's a well funded "the first one is clearly true and the second is lies from evil PHARMA to keep you from buying their drugs something something " it'll catch a lot of people, even ones who aren't necessarily that susceptible to woo in the first place.

*The other part being the entirely normal cause for a large percentage of medical scams/hatred of doctors/etc, namely "life is awful and sometimes people just feel like shit for no discernible or treatable reason."


Posted by: MHPH | Link to this comment | 06- 5-15 9:51 AM
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It's well known that some bacteria can have latent states (TB- paging ydnew) that can be reactivated by some event and cause reinfection. I'm not sure how clearly it's been demonstrated to happen for Lyme if you've been treated with the standard antibiotic. If you get no treatment it's certainly possible that the longer term symptoms can be caused by reactivation/invasion of deeper tissues, but I don't know that it's been consistently shown that persisters are still there after the standard 2 week antibiotic treatment (my mom was also involved with a study that showed 10 days is sufficient as well.)
There was paper last month claiming to have found persisters and suggesting a way to activate they so they can be killed by standard antibiotics (although it involves a toxic chemotherapy drug so not ideal.)
Note that persistence is different from resistence- when persisters are reactivated they're still sensitive to the same antibiotics, they are just in a dormant state where antibiotics affect them much less.


Posted by: SP | Link to this comment | 06- 5-15 10:04 AM
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14: Well, actually, I phrased that spectacularly badly. I should have said "after realizing that Leslie Feinberg died of something that she and her folks seemed to think was chronic Lyme, this caused me to wonder whether there is something in this chronic Lyme business after all, and to wonder what people in general could be experiencing that would be that severe and also appear to be chronic Lyme".

Leslie Feinberg's health and her friends/family's understanding of it are none of my business, and I am not trying to set myself up to evaluate her actual situation.


Posted by: Frowner | Link to this comment | 06- 5-15 10:10 AM
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Despite calling chronic Lyme "woo" in my first comment, that is.

I mean, Leslie Feinberg was a heroic person and I don't want to give the impression that any debate over Lyme disease would lessen that. I just, rather impolitic-ly, wondered.

(Not least because I had Lyme myself and have some lingering neurological issues that followed on the paralysis and numbness that I experienced...I've also always wondered whether, if there were anything in the "chronic Lyme" business, some of the depression and other stuff that I've experienced could be related to that....but then I've always been kind of mopey, well prior to the Lyme.)


Posted by: Frowner | Link to this comment | 06- 5-15 10:14 AM
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I'm just nervous because there are a lot of fucking ticks around. I have never heard so much chatter about it.


Posted by: Moby Hick | Link to this comment | 06- 5-15 10:23 AM
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The chronic lyme disease claim isn't really that there are long term results of having lyme disease (that's well accepted). The claim that's made is that the infection itself doesn't go away (as in, remains an active infection) and you have to keep taking antibiotics for years on end to control it. It's a question of treatment and the cause of the symptoms than the symptoms themselves.


Posted by: MHPH | Link to this comment | 06- 5-15 10:23 AM
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I want to remain paralysed by nothing but indecision.


Posted by: Moby Hick | Link to this comment | 06- 5-15 10:25 AM
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My mother and sister (particularly the latter) suffer from largely undifferentiated but occasionally very severe autoimmune ailments that I have to a lesser extent as well. Ironically, the rest of our constitutions seem to be rock solid rugged. Chronic illness not well understood or treated by the regular medicos is pretty much a near straight road to woo susceptibility and depression, add recurring treatment with MASSIVE doses of anabolic steroids to keep one's immune system from killing one, with it's brain pickling effects, and you get one crazy ass sibling. Plus a generally neurotic mum who is a serious hypochondriac, actually has crappy health in some respects but also looks set to live to some methusalean age and well let's just say I ration contact.


Posted by: Sissi of Bavaria | Link to this comment | 06- 5-15 10:30 AM
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20: But it seems like the chronic Lyme claim also involves more severe symptoms, right?

The post-Lyme stuff I have is, I am given to understand, pretty average in terms of how inconvenient it is - I have some problems with intermittent numbness in my legs, some patches of permanently numb skin and slightly more clumsiness with my feet and legs than you'd expect given my pre-Lyme level of coordination, but nothing that has really been more than a little weird and annoying. Admittedly, even if I did believe that this was caused by an active infection, I probably wouldn't care enough to try to get long-term antibiotic treatment because it's stable and just not that bad.

Also, the slowly abating numbness as I recovered got me out of high school gym for a full year, so it may have been a net win.


Posted by: Frowner | Link to this comment | 06- 5-15 10:50 AM
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Maybe you missed the year of high school gym where they taught not being numb and uncoordinated?


Posted by: Moby Hick | Link to this comment | 06- 5-15 10:55 AM
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"yes that's how things are going to be for you from now on," especially when 'how things are for you now' really is pretty bad

I thought that was chronic Lyme. is there some woo thing on top of that I don't about?


Posted by: Ginger Yellow | Link to this comment | 06- 5-15 10:57 AM
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Apparently fatigue, pain, and neurocognitive disabilities are all possibilities. And while apparently it's distinguishable from other things that cause those kinds of problems (e.g., depression) I'm guessing that the folks at ILADS don't necessarily exercise a great deal of caution when it comes to diagnostic work, though.


Posted by: MHPH | Link to this comment | 06- 5-15 11:08 AM
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Chronic illness not well understood or treated by the regular medicos is pretty much a near straight road to woo susceptibility and depression,

I bet this is super true.


Posted by: heebie-geebie | Link to this comment | 06- 5-15 11:23 AM
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What's woo about "chronic Lyme" is that it's caused by having Lyme disease. There are all sorts of chronic "feeling shitty all the time" problems out there that we don't understand, but which we nonetheless know that extremely high dosage antibiotics is not the solution for.


Posted by: Unfoggetarian: "Pause endlessly, then go in." (9) | Link to this comment | 06- 5-15 11:28 AM
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Even if the 'caused by Lyme disease' is right (and in a decent percentage of cases I totally believe it is) there's an important distinction between "I have Lyme disease and these are symptoms" and "I had Lyme disease and it caused such-and-such damage". The 'Chronic Lyme Disease' people depend on asserting the former, whereas basically all our medical evidence is for the latter.

The reason it's tempting to believe there is such a thing as Chronic Lyme Disease (rather than Post-Lyme Disease Syndrome or whatever) is that you can treat infections, whereas once damage is done it's damage and there it is.


Posted by: MHPH | Link to this comment | 06- 5-15 11:33 AM
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My sister may have chronic Lyme symptoms. A few years back we were all at my parents' after she'd gone hiking in Virginia. She mentioned she thought she had a bite and yup, looked, and she had the classic bullseye rash. Told her to get her butt to a doctor; for some reason it wasn't confirmed (some sort of serum test?) for a couple of years (maybe it went dormant for a bit?) until she was complaining of feeling foggy-headed all the time.

But, also the sort that orders special herbal supplements on the Internet because "natural" is better than vitamin Z, so could be lead poisoning, too.


Posted by: Cala | Link to this comment | 06- 5-15 11:36 AM
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16: Shhh, I try not to comment on especially work-related things!

Lewis' work is generally solid, but the idea of bacterial persisters as a disctinct subpopulation with a unique phenotype is a hotly debated topic. The "wake 'em and whack 'em" strategy is an old one for diseases that can display a subclinical pathology.

Papers that I find on a very cursory search suggest that symptoms like fatigue and arthritis may be linked to prolonged inflammatory response well after the bacteria are completely erradiated (to the best of our ability to test this). Authors of these reviews suggest two things that seem reasonable: these symptoms can follow many types of infections, not just Lyme disease, but they attract more notice with Lyme because it's rare and now has a reputation for causing lingering symptoms and that infection might cause more lasing damage to eg nervous system that doesn't repair as rapidly (or ever) compared to other primary symptoms of infection.


Posted by: ydnew | Link to this comment | 06- 5-15 11:37 AM
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16: Shhh, I try not to comment on especially work-related things!

Lewis' work is generally solid, but the idea of bacterial persisters as a disctinct subpopulation with a unique phenotype is a hotly debated topic. The "wake 'em and whack 'em" strategy is an old one for diseases that can display a subclinical pathology.

Papers that I find on a very cursory search suggest that symptoms like fatigue and arthritis may be linked to prolonged inflammatory response well after the bacteria are completely erradiated (to the best of our ability to test this). Authors of these reviews suggest two things that seem reasonable: these symptoms can follow many types of infections, not just Lyme disease, but they attract more notice with Lyme because it's rare and now has a reputation for causing lingering symptoms and that infection might cause more lasing damage to eg nervous system that doesn't repair as rapidly (or ever) compared to other primary symptoms of infection.


Posted by: ydnew | Link to this comment | 06- 5-15 11:38 AM
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And, in being careful not to comment, I'll just double-post the carefully worded version.


Posted by: ydnew | Link to this comment | 06- 5-15 11:39 AM
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I'm still somewhat skeptical that most 'chronic Lyme disease' is in any way Lyme related (though not doubting at all that there are people with long term damage caused by a Lyme infection). It's people with fibromyalgia who got suckered into thinking it's related to Lyme disease by some crank. After all, isn't it true that a bunch of people with 'chronic Lyme disease' were never actually infected with Lyme disease at all?


Posted by: Unfoggetarian: "Pause endlessly, then go in" (9) | Link to this comment | 06- 5-15 11:41 AM
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Oops, my bad, I thought you had before- Heebie, want to delete that parenthetical in 16?


Posted by: SP | Link to this comment | 06- 5-15 11:42 AM
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Ironically, I've had great luck over the years keeping the wonky bits of my own system working reasonably well via acupuncture pretty darn far out on the woo spectrum, but combined with consistent dedication to general clean living and fitness, including avoiding situations and people not good for my mental health when and wherever possible, including family. Sister's system got an early blast of exposure to some chemicals not generally problematic but that set off a general rampage by her immune system that nearly killed her, and mother mired in a lifetime of self sabotaging behaviors.

People of good health, rejoice and do not take it for granted!


Posted by: Sissi of Bavaria | Link to this comment | 06- 5-15 11:43 AM
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Anyway, let me put in a second for some of the chronic Lyme patient advocacy groups being nutso- like stalking my mom's boss because he published some research paper they disagreed with.


Posted by: SP | Link to this comment | 06- 5-15 11:44 AM
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There are almost certainly a bunch of people suffering from generic malaise symptoms (including conversion disorders, fibromyalgia, and just general who-the-hell-knows) lumped into the chronic lyme disease people too, though I'm willing to believe that a lot of them did actually have lyme disease and get some nasty damage as a result.

30 - I think the test is inconclusive if it's in the very early stages (like a pregnancy test) so that could explain why the early results were off.


Posted by: MHPH | Link to this comment | 06- 5-15 11:47 AM
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37: I know the person who acted as NIH's public mouthpiece during the whole XMRV-CFS fiasco, and some of the people he had to deal with were real pieces of work. Apparently patient advocacy groups can be a mixed blessing.


Posted by: AcademicLurker | Link to this comment | 06- 5-15 11:49 AM
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35: Not a big deal, no need to redact. I have funny things I try to avoid (like your parenthetical!). I'll happily comment on drug resistance in general and some bacteria-ish things, but the idea of latent vs active bacterial disease and persisters are topics that folks have very strong feelings about, and I'm pretty unqualified to evaluate who is right. (My boss! And no one else! Go team!)

39.1 Poor soul.


Posted by: ydnew | Link to this comment | 06- 5-15 11:58 AM
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Leslie Feinberg also claimed to have several other "controversial" diseases which reports also say caused her death. For example, an infection by "protomyxzoa rheumatica," which appears to not be an actual thing at all.

It's a bit weird that none of the reports mention the specific cause of death (e.g. some organ failing). 65 isn't that young for someone who was unhealthy and probably taking high doses of toxic medicines, but it doesn't seem like we're ever likely to know what the actual cause was.


Posted by: Unfoggetarian: "Pause endlessly, then go in" (9) | Link to this comment | 06- 5-15 12:04 PM
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I think my aunt has had Lyme disease. As for whether or not it's real Lyme disease or something else, she did live in rural Maine at the time and hike a lot, which are risk factors.

I had a Lyme disease scare myself last year. One day I noticed an itchy, swollen bump on my wrist. I didn't roll up my sleeve and look at it closely for hours, and when I did, it reached all the way to my elbow. My wife thought it was blood poisoning. I went to the doctors; they said it might be an infection but was probably just an allergic reaction to something. They treated me for both just in case. Two or three weeks later, the same thing happened on the other arm. I went to the doctor and they said it was either an infection or Lyme disease, so they had me tested for that. Test results were late. The night before we were going to leave for Christmas vacation, I got a call asking me to come in to discuss the test results. I asked but they wouldn't give me any details over the phone. This was scary. I went in first thing that morning without an appointment in hopes that they could find the time. When the doctor sat down with me, he explained that the test result came back with a roughly 1 percent chance of Lyme disease, which isn't as low as the test can be so they wanted me to keep my eyes open for further symptoms but definitely isn't worth worrying about. He actually apologized for the receptionist not giving me the results over the phone; apparently that wasn't the first time they've had a problem like that.

I was so relieved by that that I didn't care about the lack of $5.


Posted by: Cyrus | Link to this comment | 06- 5-15 12:05 PM
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38: Yeah, I think that's what happened, because two years later when the doc said she had Lyme, I being a bossy big sister asked if she'd seen someone when I had noticed the rash, and she said it had come back negative. She hadn't felt ill at all at the time.


Posted by: Cala | Link to this comment | 06- 5-15 3:25 PM
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Chronic lyme disease advocates on the internet scare the bejesus out of me.

My son got Lyme last summer, after a canoeing and camping trip. He had that characteristic bulls-eye target rash, which was strange and freaky. We caught it it time (within a week or so of the trip); got him on a course of antibiotics; and it all cleared up very quickly.

According to the latest dispatches from the realm of medical science, my boy will be absolutely fine, and may even now have some immunity against the disease. According to the alarmist rhetoric of the internet advocates, he is almost certainly doomed. A year from now, five or ten years from now, he may suddenly find himself paralysed for life. Argh!

Yeah, a vaccine for humans would be a very good thing. Nice to know that my dog is protected, though.


Posted by: Just Plain Jane | Link to this comment | 06- 5-15 5:58 PM
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to keep taking antibiotics for years on end to control it make the bacteria resistent.

Wonderful.


Posted by: chris y | Link to this comment | 06- 6-15 1:47 AM
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I live in a high-tick environment, and consequently I try to be very careful. I've been bitten by Lyme-carrying ticks (you can get a tick tested for all the nasty tick-borne diseases, maybe expect powassan). Fortunately I've gotten them all off before they infected me. Powassan scares me because it allegedly only takes 15 minutes attached to infect you. Lyme takes 12 to 24 hours.

I know a fair number of people who have had Lyme, and many of them have long term symptoms of varying degrees of severity, but some have nothing.

A lot of people I know are using permethrin. You can put out "tick tubes" (which are basically just empty toilet-paper rolls stuffed with permethrin-soaked cotton) to de-tick your local mice. You can buy permethrin-infused garments, or wash clothing in a permethrin solution; it lasts months, I'm told. It doesn't take much permethrin to be effective. Also you can put it in your shoes: a ton of tick bites start with the tick getting in your shoes.

I hadn't heard that there's a dog vaccine before reading that article. Naturally the cranks are against it.

Medical cranks are the worst; they make global warming denialists and YECs look like paragons of rationality.


Posted by: DaveLMA | Link to this comment | 06- 6-15 8:02 AM
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I really don't get it.
If you don't want to get the vaccine then don't get it.
But why does it have to be blocked for everybody else?
Nobody is talking about mandatory vaccination ...


Posted by: wolfgang | Link to this comment | 06- 6-15 8:40 AM
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Protip: activists often don't mean it when they say all they want is choice.


Posted by: Minivet | Link to this comment | 06- 6-15 8:47 AM
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Some more poking around in the seedy underbelly of the Internet suggests that Feinberg probably died of anorexia. The main evidence being her facebook posts about how she couldn't eat anymore due to difficulty swallowing and her refusing medical treatment. Nothing conclusive, but it seems the most plausible theory from public info. Certainly much more plausible than infection by a fictional organism.

(This poking around also reveals a whole other group of pro-butch anti-trans conspiracy theorists who really want to blame testosterone for her death. There doesn't seem to be any more evidence for this theory than for the Lyme disease explanation.)


Posted by: Unfoggetarian: "Pause endlessly, then go in." (9) | Link to this comment | 06- 6-15 11:52 AM
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||
It would be funny to find a new species of cat and name it Felis Dzerzhinsky
||>


Posted by: Natilo Paennim | Link to this comment | 06- 6-15 12:04 PM
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I can endorse using permethrin, as Dave mentions in 46. I started using it last summer on my hiking pants, socks, and shoes, and I didn't pick up any ticks, which was quite unusual given that I hike in central MN (Crow Wing and Pine counties) where ticks and Lyme are probably the most prevalent outside of the northeastern states. Permethrin is also pretty useful against mosquitoes.

For the lighter side of parasites: wood tick racing. As the man says, "You gotta do something."


Posted by: protoplasm | Link to this comment | 06- 6-15 1:26 PM
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One of my kids is spending the summer trapping (and releasing) small mammals in the woods of Virginia (and I think some in Maryland). Disease transmission being one of the things studied, so ticks are a significant aspect. And I think they are not supposed to go heavy on the tick repellent. Whe we visited a few weeks back I found A Field Guide to Ticks in a gift shop in Shenandoah Nat'l Park and bought it for him.


Posted by: JP Stormcrow | Link to this comment | 06- 6-15 8:03 PM
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MIGHTY GOOD EATIN' ON THOSE TICKS!

http://www.inquisitr.com/2106782/opossums-the-unsung-heroes-against-lyme-disease-and-other-tick-borne-diseases/


Posted by: OPININATED OPPOSUM | Link to this comment | 06- 6-15 8:20 PM
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Given the amount of tromping through fields and woods I've done with my dog, I would be relieved to finally find a tick on myself.


Posted by: Eggplant | Link to this comment | 06- 6-15 8:24 PM
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Now I feel worse for the two opposum deaths my dog has caused. Neither were permanent, but still, sorry OO.


Posted by: Eggplant | Link to this comment | 06- 6-15 8:46 PM
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HFS, this is an odd coincidence. I'm watching The Punk Singer and Kathleen Hanna says she stopped touring because she has "Late stage lyme disease."

I think people who dismiss things like chronic lyme disease as "woo" are often burdened by the same fallacy that bedevils people who believe in it: the belief either a problem has a single biological origin, or it is "just hysteria" or "just malingering."

I have more thoughts, but I'm going to finish my movie.


Posted by: rob helpy-chalk | Link to this comment | 06- 6-15 8:48 PM
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55: your dog caused non-permanent death?


Posted by: essear | Link to this comment | 06- 6-15 9:06 PM
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Yours doesn't?


Posted by: teofilo | Link to this comment | 06- 6-15 9:06 PM
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Oof, Hanna compares feminist awareness of oppression and belief in late stage lyme disease because in both cases people dismiss you as hysterical.


Posted by: rob helpy-chalk | Link to this comment | 06- 6-15 9:15 PM
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Death is at least as slippery a concept as life.


Posted by: Eggplant | Link to this comment | 06- 6-15 9:25 PM
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Especially for opossums.


Posted by: teofilo | Link to this comment | 06- 6-15 9:26 PM
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They were just playing?


Posted by: Barry Freed | Link to this comment | 06- 6-15 9:28 PM
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Playing themselves, yes.


Posted by: Eggplant | Link to this comment | 06- 6-15 9:32 PM
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The thing with chronic Lyme disease is that huge doses of IV antibiotics is dangerous and toxic and leads to real harm to people. It's certainly true that women's pain and fatigue have been traditionally ignored by the medical community and that there are lots of medical problems that are not understood. But none of that justifies quack doctors taking advantage of their patients and giving them very dangerous and completely useless treatments.


Posted by: Unfoggetarian: "Pause endlessly, then go in." (9) | Link to this comment | 06- 6-15 10:02 PM
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Its worth noting that the filmmaker for that documentary is also a "chronic Lyme disease" sufferer. Here's an interview with more in her own words http://www.truth-out.org/news/item/24405-lyme-disease-is-a-feminist-issue-an-interview-with-sini-anderson


Posted by: Unfoggetarian: "Pause endlessly, then go in." (9) | Link to this comment | 06- 6-15 10:12 PM
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Yeah, everything about Hanna's doctor screamed "con artist" to me. He said things like "Late stage lyme disease is like Kryptonite to Superman." That's scare talk, not medical talk. I was hoping that most of the fistful of pills he had her taking were placebos, and not actual antibiotics.

Thing is, Hanna started showing all sorts of symptoms at the end of a huge tour with Le Tigre, the biggest, most successful band she's ever been in. It seems obvious, at least from my perspective, that she was simply exhausted. One of the doctors she saw early on said something like "Your problem has to be psychological, because it is affecting too many different systems. You've got neurological symptoms, respiratory symptoms, digestive symptoms. No one thing can affect all those systems."

But for a fighter like Hanna, a diagnosis like "exhaustion" probably doesn't come across as a diagnosis at all. More like an accusation of weakness.

I really wish people--doctors and patients alike--would stop thinking of problems as "merely" mental. The phrase "it's all just in your head" needs to be wiped form our vocabulary.


Posted by: rob helpy-chalk | Link to this comment | 06- 7-15 6:08 AM
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"Aaaugh! The symptoms are coming from...inside your head."


Posted by: heebie-geebie | Link to this comment | 06- 7-15 6:10 AM
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Oh and look, here's the filmmaker from the link in 65 describing the same sequence of events I was talking about

we have to think about what doctors we're talking to, what symptoms we're presenting to them, because we can't be brushed off into a corner just saying, "Okay, this is somebody who is just sad." It's like, "no, I'm not sad. I'm telling you that I'm having problems with my speech. I'm having a great amount of pain. I can't think clearly anymore,"

"I can't be just sad because I have physical symptoms."

I categorize truthout.org and addictinginfo.org as unrealiable sources that share my political worldview. Does that sound right to you?


Posted by: rob helpy-chalk | Link to this comment | 06- 7-15 6:40 AM
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sissi of bavaria: are you my actual sister? no, wait, I hope you don't think I'm the crazy one. we're both the crazy one. Chronic illness not well understood or treated by the regular medicos is pretty much a near straight road to woo susceptibility and depression. god so true and male doctors looking at tests and saying 'nothing's wrong with you' is difficult to meet with continued serene rejoinders of 'then way do I feel so fucking terrible?!'


Posted by: | Link to this comment | 06- 7-15 8:30 AM
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69 me obviously and way s/b why. unwilling to log in and fix it despite superhuman blog-editing powers.


Posted by: alameida | Link to this comment | 06- 7-15 8:31 AM
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68, etc:

Almost everyone has been stupid and angry because they were hungry, and conversely had physical symptoms caused by emotion. (I once realized, in the middle of ordinary unstressed musings, that I had misunderstood a social situation completely, been betrayed and set up by A into damaging B; it was so sudden and awful that I retched. )

Given which, how can we ever say 'just mental'?


Posted by: clew | Link to this comment | 06- 7-15 11:04 AM
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68 - To me the really wince inducing bit comes right after that bit you quoted -

"and that "yes, there's depression that comes along with that and there's specific Lyme anxiety, that isn't your run-of-the-mill general anxiety"
What she describes really, really sounds like what you get from an anxiety disorder and/or depression. But it's important, not normal, boring stuff like that!

And the earlier bit where she talks about the first time it happened is even more blatant:

My doctor heard my symptoms; they just very suddenly got extremely bad and multiple symptoms came on - and my doctor sent me to the emergency room because we weren't sure if it was a heart attack ... You know, I just knew something was really, really wrong.

This is like what you'd get if you googled "panic attack" and wrote down a description of what the symptoms usually look like.


Posted by: MHPH | Link to this comment | 06- 7-15 11:28 AM
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then why do I feel so fucking terrible?!
Life is pain, Highness! Anyone who says differently is selling something.


Posted by: SP | Link to this comment | 06- 7-15 12:03 PM
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74

||

Looks like some good news coming out of Turkey for a change.

|>


Posted by: Barry Freed | Link to this comment | 06- 7-15 12:19 PM
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I had a classic bullseye rash four years ago subsequent to a tick bite, followed by a constellation of symptoms of ascending severity, but negative blood tests for lyme, and I haven't been able to walk for five months. Nobody's so sad they can't walk.


Posted by: foolishmortal | Link to this comment | 06- 7-15 12:26 PM
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75: Whoa. Have they tried the treatments you'd get for Lyme anyway?


Posted by: clew | Link to this comment | 06- 7-15 12:33 PM
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What!! Holy shit, FM. What are the doctors saying?


Posted by: heebie-geebie | Link to this comment | 06- 7-15 12:39 PM
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The doctors said quad strain for the first few months, even though there wasn't any precipitating event. Now they're conferring with each other and equivocating. They're not treating for Lyme, that would be IV antibiotics. I don't think they do that without some kind of confirmed diagnosis.


Posted by: foolishmortal | Link to this comment | 06- 7-15 12:50 PM
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But that's not my point, which is that the body is a complicated mechanism, and shit happens to it that people do not understand. That does not necessarily mean said shit is psychosomatic. As noted above, having ill defined things happen to your body can be a sanity-depleting experience, further confounding the issue.


Posted by: foolishmortal | Link to this comment | 06- 7-15 12:58 PM
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That really sucks, foolishmortal.


Posted by: Barry Freed | Link to this comment | 06- 7-15 1:03 PM
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foolishmortal, have you sought out a Lyme disease support group (online or not)? I know someone who got Lyme disease, and he found doctors to be largely unhelpful, but through a support group he educated himself about alternative treatments and pretty disciplined self-care, and after several years of slow recovery he now seems to be in good health.


Posted by: Virgalicious | Link to this comment | 06- 7-15 1:45 PM
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75: I was curious, so I looked up physician recommendations for Lyme. (IANAMD, obviously.) The summary I found says that patients who have resided or traveled in an area endemic for Lyme disease, have a risk for tick exposure, and have the classic rash should be treated immediately for Lyme, no blood test recommended or required. It also says that for early Lyme disease, only 20-40% of patients (who have Lyme disease) test positive. For "disseminated, early disease," oral antibiotics were found to work just as well as IV.

I'm so very sorry that your docs are unhelpful morons and that you're ill. I hope they manage to get an infectious diseases specialist and also re-run blood tests, which should be less ambiguous and more reliable the longer it's been.


Posted by: ydnew | Link to this comment | 06- 7-15 1:55 PM
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Thank you all for your concern. On the bright side, I've now caught up with like every British TV show ever, good and otherwise. Go on, ask me anything about Midsomer County.


Posted by: foolishmortal | Link to this comment | 06- 7-15 2:35 PM
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Go on, ask me anything about Midsomer County

Has fandom actually produced a map?

That show handles cast changes better than any long-running series I've ever seen. The incidental music written for individual episodes, and the Theremin main theme are excellent.

I'm sure it's most easily put down to a convention of contemporary detective series, but the sheer amount of sleeping around presumed and confirmed in every episode is astonishing to me. Sort of Hayes-code upside down.


Posted by: idp | Link to this comment | 06- 7-15 2:44 PM
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You've got neurological symptoms, respiratory symptoms, digestive symptoms. No one thing can affect all those systems.

Doctors are so stupid. How I loathe them. Have I mentioned that before?


Posted by: E. Messily | Link to this comment | 06- 7-15 2:44 PM
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Also sorry to hear that FM.

We should start a Mystery Maladies of Unfogged support group.


Posted by: E. Messily | Link to this comment | 06- 7-15 2:50 PM
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alameida, we are like the super low rent version of your clan! Think two generations removed from bootlegging in Fresno, which itself was a major step up from being born on a reservation.


Posted by: Sissi of Bavaria | Link to this comment | 06- 7-15 3:15 PM
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fm, my deepest sympathies. If you haven't heard it already the audio book of Wolf Hall and Bring Up The Bodies may be check outable from your local library and they are amazingly good, totally different experience from reading the books and they eat up the hours!


Posted by: dairy queen | Link to this comment | 06- 7-15 3:20 PM
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56, 59, 66 etc: I find this weird. Hanging your very real emotional/psychiatric/whatever problem on a physical, sciency cause that nobody can actually demonstrate - that's precisely what it is to deny its existence. I thought the point was that these things were real, in themselves. You don't need a licence to be sad.

The tell is the proposed treatment: it's not a talking therapy, or some sort of political action/life reform, it's IV broad spectrum antibiotics, a massive hard-medical B-52 strike roughly in the area of interest hell who cares if you got'em by the balls the heart and mind follows dammit. So American.

In fact, it's 1960s "here, Madam, try these tranquillisers and all will be fantastic" with the sign reversed.


Posted by: Alex | Link to this comment | 06- 7-15 4:12 PM
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83: I had no idea. Hope you feel better soon.


Posted by: Moby Hick | Link to this comment | 06- 7-15 7:14 PM
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Another thing with chronic pain or chronic conditions is that often it is a good idea to suggest mental health support for a patient. Unfortunately, some people hear that as saying the issue is all in their head. Healthy care providers need to be very sensitive to this possible reaction.


Posted by: md 20/400 | Link to this comment | 06- 7-15 10:19 PM
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Nobody's so sad they can't walk.

Well, actually, they can be sometimes, but this doesn't necessarily mean anything about your situation.

Catatonia and hysterical paralysis are the obvious counter examples here. I mostly associate them with the "shell shock" (PTSD) soldiers of WWI, but they can also come from depression.


Posted by: rob helpy-chalk | Link to this comment | 06- 8-15 5:00 AM
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89: I'm not sure what you are getting at. I did not want to deny the existence of Hanna's illness and I didn't think Hanna or her dr. are either. What I dislike is the inference from "this is real" to "this must have a single biological cause that we can fix with pills."

I would really like it if "nervous exhaustion from extensive touring" were accepted as a real illness that merits treatment.

I've actually learned to recognize somatizing in myself. I've learned to say "ok, I am *not* having a heart attack, but this is a real sign I need to go easy on myself. And I retreat to an informal, ill informed combination of CBT and half assed Buddhist meditation that works for me. (Also SSRIs) This was *not* an easy solution. It was not just snapping out of it. But people should know that solutions like this might be the ones they need. People should be able to suggest this route without being seen as dismissing the patient's problems.


Posted by: rob helpy-chalk | Link to this comment | 06- 8-15 5:13 AM
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I mostly associate them with the "shell shock" (PTSD) soldiers of WWI

I was recently reading a very interesting article about the reappraisal of "shell shock" diagnoses. The accepted story is that WWI medics described shell shock as a physiological syndrome, something to do with explosive trauma to the nerve tissue, but this was kind of a white lie to get round the stigma attached to mental illness like PTSD. Hence the name - it was supposedly a physical shock injury. But nowadays, the story goes, we are more accepting of mental illness than our benighted forebears, and we can see that in fact these soldiers had PTSD.

But we've got quite a lot of clinical data on traumatic brain injury now, and it seems that a lot of "shell shock" cases may have been TBI (itself still very mysterious) rather than PTSD, because the etiology fits better. So the old 1910s "explosive shockwaves are bad for brain tissue and cause weird neuro symptoms" guys may have been correct some of the time...


Posted by: ajay | Link to this comment | 06- 8-15 5:44 AM
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This would take only a few months to sort out if the obvious control group (people who have had lots of explosives go off near them but have not experienced combat) could possibly exist.


Posted by: Moby Hick | Link to this comment | 06- 8-15 5:51 AM
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Sorry to hear about foolishmortal incapacitation! I'm currently laid up with a severely sprained foot myself. Practice good self-care everybody!


Posted by: Natilo Paennim | Link to this comment | 06- 8-15 5:51 AM
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95: Miners, building imploders, police EOD officers, weapons designers, military trainers, amateur pyrotechnics enthusiasts, professional pyrotechnics presenters...


Posted by: Natilo Paennim | Link to this comment | 06- 8-15 5:53 AM
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I don't think many of those guys are getting even close to the same dose.


Posted by: Moby Hick | Link to this comment | 06- 8-15 5:55 AM
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Maybe some pre-OSHA miners.


Posted by: Moby Hick | Link to this comment | 06- 8-15 5:56 AM
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97: most of those guys are well clear of the blast when it goes up, but the article noted TBI symptoms in method-of-entry instructors*, who experience regular mild exposure to explosive shock but have not necessarily seen combat.


(*"How to blow a hole in a door/building/compound wall").


Posted by: ajay | Link to this comment | 06- 8-15 6:03 AM
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AIPMHB, I once had a boss who thought that TBI was the cause of most imprisonment in the U.S. It wasn't that getting a couple of good conks on the head made you more criminally inclined, but that it cut self-control enough that you wouldn't be as able to avoid getting caught at your crime if you were, for other reasons, criminally inclined.


Posted by: Moby Hick | Link to this comment | 06- 8-15 6:10 AM
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Post-OSHA miners as well.

Does anyone else cringe when you see road crews using one of those gigantic concrete-and-asphalt saw things? The kind that are like 400 decibels, and the guys running one never seem to wear ear protection? You would think being exposed to that much noise would not only deafen you, but mess with your head as well.


Posted by: Natilo Paennim | Link to this comment | 06- 8-15 6:12 AM
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All those guys lose some hearing, especially at the high end, but I don't think the jarring of the brain would be the same as with the concussive force of a shell.


Posted by: Moby Hick | Link to this comment | 06- 8-15 6:14 AM
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By "high end", I mean in terms of the tone of the sound, not the high-end of the construction industry.


Posted by: Moby Hick | Link to this comment | 06- 8-15 6:15 AM
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being exposed to that much noise would not only deafen you, but mess with your head as well

So death metal musicians, too.


Posted by: Stanley | Link to this comment | 06- 8-15 6:17 AM
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The people I knew who were most into shooting all lost a bunch of hearing also. I don't know if wearing ear protection would have helped or not, but nobody ever worried about that back then.


Posted by: Moby Hick | Link to this comment | 06- 8-15 6:18 AM
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105: Do most musicians wear ear protection now or is that just something the rich, old ones I read about do?


Posted by: Moby Hick | Link to this comment | 06- 8-15 6:21 AM
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Yeah, I didn't mean that the guys with the big street saws would necessarily suffer the same kind of trauma as people who are around explosions, but there must be some kind of trauma going on there, you would think. And of course regular gunshots are not usually imparting a great deal of concussive force to one's head. If they are, you need to change your shooting technique.


Posted by: Natilo Paennim | Link to this comment | 06- 8-15 6:24 AM
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Shaken road worker syndrome?


Posted by: Moby Hick | Link to this comment | 06- 8-15 6:29 AM
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By 1970 the Army was well-aware of the damage to hearing from being close to small arms. Most of my drill instructors, middle-aged men who'd spent their lives in the Infantry or Paratroopers had some hearing loss, and the Senior Drill Sergeant wore a hearing aid. Ear plugs were issued to every soldier for use on the ranges, I still have mine.

I had naively assumed the issue would be worse in the Artillery, but apparently it was not so, because the pitch of the rifle crack was much higher, as well as being so close to your ear.


Posted by: idp | Link to this comment | 06- 8-15 6:43 AM
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93: The people you're quoting seem to insist that it's not a psychiatric thing, it's GERMS, and therefore the answer is more DRUGS.


Posted by: Alex | Link to this comment | 06- 8-15 6:48 AM
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110: I always wondered why artillery folks don't all go deaf in short order.


Posted by: AcademicLurker | Link to this comment | 06- 8-15 6:50 AM
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I think the explosion at the other end of the shelling process is louder.


Posted by: Moby Hick | Link to this comment | 06- 8-15 6:54 AM
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113: Maybe a controlled study is in order.

"Subject group A will stand next to the howitzer. Subject group B will stand over there..."


Posted by: AcademicLurker | Link to this comment | 06- 8-15 7:01 AM
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I seem to recall reading at least one novel where a small running joke is that one of the characters is an artillery sergeant, and thus, deaf.


Posted by: nattarGcM ttaM | Link to this comment | 06- 8-15 7:03 AM
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I went to a LOT of metal gigs in my teens. Of the 'physical pain and tinnitus for some time after' variety. I seem to have missed out on hearing loss, though.


Posted by: nattarGcM ttaM | Link to this comment | 06- 8-15 7:03 AM
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Have you been tested? (I'm not suggesting you should be tested if it doesn't bother you, but that you could very easily have hearing loss without noticing it.)


Posted by: Moby Hick | Link to this comment | 06- 8-15 7:05 AM
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Formally tested in high school, yes. Everyone was, iirc.

Not since, although I've checked how high and low I can hear and run through various on-line self tests. My hearing tops out at about 17KHz, which is pretty good for someone in their 40s.

It's possible, though, that there's a slight left-right imbalance. There may also be some dips here and there, I've not tested to that level of fineness. But in terms of high-end hearing loss, I don't seem to have any.


Posted by: nattarGcM ttaM | Link to this comment | 06- 8-15 7:07 AM
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TTAM! HAVE..YOU...BEEN...TESTED.


Posted by: heebie-geebie | Link to this comment | 06- 8-15 7:08 AM
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Goddamnit.


Posted by: heebie-geebie | Link to this comment | 06- 8-15 7:08 AM
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I can hear dog whistles, but only metaphorical ones.


Posted by: Moby Hick | Link to this comment | 06- 8-15 7:09 AM
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115: comes into Good Morning Vietnam, too.

"Hi, what's your name?"
"BOB FILBER!"
"Bob, what do you do?"
"I'M IN ARTILLERY!"
"OK, and what do you want us to play?"
"ANYTHING! JUST PLAY IT LOUD, OK?"

Shooting certainly kills your high-frequency hearing, especially (oddly) in the off ear - i.e. the one that isn't on the rifle side. I suppose the sound is quietest directly behind the muzzle.


Posted by: ajay | Link to this comment | 06- 8-15 7:19 AM
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Do most musicians wear ear protection now

I wear earplugs. At this point, I'd say 80% of the musicians I play with wear earplugs or in-ear monitors (which might be worse for your ears). When I was in bands in my early 20s, I was usually of the few people wearing earplugs.


Posted by: Stanley | Link to this comment | 06- 8-15 7:20 AM
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*one* of the few


Posted by: Stanley | Link to this comment | 06- 8-15 7:20 AM
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I'm so sorry, foolishmortal, that totally sucks. I hope things improve soon!


Posted by: alameida | Link to this comment | 06- 8-15 7:38 AM
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111: Yes, I was disagreeing with them. That's why I said things like "everything about Hanna's doctor screamed "con artist" to me" and "that's scare talk, not medical talk."


Posted by: rob helpy-chalk | Link to this comment | 06- 8-15 9:27 AM
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A lot of hearing loss from repeated exposure to loud noise doesn't show up until later. People go to lots of shows or shoot lots of guns or whatever in their young & reckless years and then start noticing problems hearing at 40 or 50.

I thought most in-ear monitors controlled for volume without distortion? I know that the fancy high-end individualized earplugs do that. People who go to lots of loud shows should invest in those, going deaf is kind of annoying.


Posted by: E. Messily | Link to this comment | 06- 8-15 9:37 AM
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