Maybe It's Lyme
July 26, 2019 9:32 AM   Subscribe

What happens when [chronic lyme disease] becomes an identity? This version of Lyme has no consistent symptoms, no fixed criteria, and no accurate test. This Lyme is a kind of identity. Lyme is a label for a state of being, a word that conveys your understanding of your lived experience. Lyme provides the language to articulate that experience and join with others who share it. In the world of chronic Lyme, doctors are trustworthy (or not) based on their willingness to treat Lyme. Tests are trustworthy (or not) based on their ability to confirm Lyme. Lyme is the fundamental fact, and you work backward from there. Lyme is a community with a cause: the recognition of its sufferers’ suffering — and, with it, the recognition of Lyme.

Via Jamelle Bouie's newsletter.
posted by dismas (55 comments total) 26 users marked this as a favorite
 
So what is this Doctor Raxlen’s background...
not until he’d settled in Connecticut and was practicing as a family therapist did he turn his focus to Lyme disease. He is trained as a psychiatrist, but he is not board certified in that or any other specialty.
Quack quack quack quack
posted by Homo neanderthalensis at 9:47 AM on July 26 [35 favorites]


This reminds me so, so much of the wide world of people who are dead sure they're suffering from hypothyroidism if only their doctor would do the right test. It used to be basically impossible to find reliable info on thyroid disorders online because every search result is full of conspiracy theory, misinformation, homeopathy, and other noise. I say "used to be" because I stopped looking years ago. There's the same network of recommended doctors who "get it" and are willing to run all these different tests, medicate at lower thresholds, etc.

In the case of thyroid disorders there's not just the "brain fog" but also the connection to persistent weight gain that doesn't seem to respond to diet changes. People are desperate to understand why their bodies won't do what they want, and the thyroid can be scapegoated for everything. I'm sure a lot of the people in the article pursued thyroid diagnoses as well.
posted by potrzebie at 10:09 AM on July 26 [12 favorites]


Both thyroid disorders and Lyme are attractive targets for this sort of thing because the tests or diagnosis process for them are not as reliable as other medical disorders. That doesn’t mean they’re useless or just guesswork, far from it. But disorders like that would tend to attract people who feel ill or off but can’t seem to find a medically-recognized diagnosis.
posted by sallybrown at 10:19 AM on July 26 [9 favorites]


Why is the CDC concerned about Lyme disease?
Lyme disease is an infection spread by the bite of ticks that causes more than 300,000 illnesses each year in the United States. It is the most commonly occurring vector-borne disease and the sixth most commonly reported notifiable infectious disease.
Cases have roughly quadrupled since 1991. Why? Here's one reason: How climate change helped Lyme disease invade America

And there's a vaccine-- for dogs. There used to be one for humans. Used to be.
posted by gwint at 10:19 AM on July 26 [20 favorites]




I have a friend who has Lyme disease and it's been hell for him.
posted by nikaspark at 10:23 AM on July 26 [6 favorites]


In the case of thyroid disorders there's not just the "brain fog" but also the connection to persistent weight gain that doesn't seem to respond to diet changes. People are desperate to understand why their bodies won't do what they want, and the thyroid can be scapegoated for everything. I'm sure a lot of the people in the article pursued thyroid diagnoses as well.

I just had a blood test done to check for a thyroid disorder (they run in my family and I'm having various potentially-related symptoms that are getting worse), and the results were "maybe, maybe not, let's do further tests." And, man - I really, really hope those further tests are positive.

It might sound weird to say "I hope I'm sick," but the thing is, I'm already 'sick' - or, at least, my body is doing a bunch of stuff that I don't recognize and that is making my life harder. Anybody who has never had an undiagnosed condition can't know how incredibly frustrating and demoralizing it is to have something obviously wrong with you, and no idea why it's happening or what to do about it, despite repeated doctor visits.

I'm glad that I'm aware of the weird internet culture around thyroid stuff, which hopefully will keep me from going down a rabbit hole if the tests are negative. But I absolutely understand why it happens. Especially since many, many people - especially women - go undiagnosed for years when they have testable and treatable diseases and just haven't been giving the proper tests to confirm it.
posted by showbiz_liz at 10:41 AM on July 26 [54 favorites]


The fact that we don't currently have a vaccine for humans, while good options exist for pets is a fair indictment of the perverse incentives from both government and industry. In the US and in Canada.

We've known about this problem for at least a couple of decades. That should have been more than sufficient time to get through the fundamental research and all the necessary human trials.
posted by bonehead at 10:52 AM on July 26 [13 favorites]


Yeah, I'm angry about this. It's likely my dad, undiagnosed, had many years of dealing with the symptoms. I wouldn't wish it on anyone.
posted by bonehead at 10:56 AM on July 26


This is such a compassionate article and yet it is preaching to the choir.

I used to follow a dog training blogger (not the one interviewed in the article, funnily enough) who was getting sicker and sicker (from MCS, CFIDS, etc) and it supposedly all started from a chronic lyme infection. Of course she was being treated fo babesia and bartonella too with heavy regimens of IV antibiotics too, etc etc. along with constant "herx" reactions after every treatment. I am so pleased to look her up nowadays and she is recovered, she credits her recovery to basically repackaged home CBT as well as physical therapy, and I think mostly importantly she doesn't deny that she was ill. Anyone who knew her or followed her could see she was incredibly ill, whatever the cause.
posted by muddgirl at 10:57 AM on July 26 [5 favorites]


I thought this was a good, balanced, informative write-up. It would be interesting to find out if these various wellness cults we have here in the US exist in countries where healthcare is more normalized and readily accessible to everyone. Where having access to healthcare isn't that big a deal and therefore maybe it doesn't become fetishized like this (in the sense of like a religious fetish object, something you worship because you think it's controlling everything and solving all of your many problems). Especially I think if we had better mental health care in general, as in more providers who were easier to access, and less stigma around it, a physical cause of everything wouldn't be seen as a requirement. The issue mentioned in the article around how these might be psychological problems but you need to communicate that the right way and then act like you care to help and not just send them home and tell them to get over it. If it was possible to just get over it they wouldn't have gone looking for help.

I too am kind of caught in the hypothyroid trap which is also in the same boat as adhd because it's like when you show up and say "can you help me with this" you're now associated with everyone else who has ever said "can you help me with this" and whatever actions they took now reflect poorly on you by association. Then if you say I feel bad and I don't know why the doctor shrugs and sends you home. If you say I feel bad and I looked into it and it might be x, you're suspicious. The only way to get relief is to seek out the individuals who you think will listen. This is how these toxic little fiefdoms develop.
posted by bleep at 11:05 AM on July 26 [29 favorites]


I can see why people would be seeking out a pathogenic diagnosis like this. Nobody's symptoms here are problems of their character, but they sure would be treated like that if they went after treatment for pain or adult ADD or fatigue. Not that everybody there is behaving well at all, mind, but it's not like anti-vaxx, to me. You can tell people that their kids should get vaccinated and trust that those kids will be fine. You can't tell someone in the "Lyme" community to go to another doctor and know they're going to get adequate treatment for the sorts of things they're describing. The issue here is not anybody who is discontent with the system's handling of their chronic problems; the issue is the doctor willing to do dangerous treatments that don't work and the regulatory systems that are fine with that.
posted by Sequence at 11:05 AM on July 26 [1 favorite]


People are desperate to understand why their bodies won't do what they want,

It's a bit more than that. This isn't people being like "why can't I run the mile in 4 minutes", it's people's bodies reacting as though they've just run a marathon when in reality they've just gone on a short leisurely walk (for example). When you go to a doctor, explain that this is happening and that it's interfering with your ability to live even a not-very-intensive daily life, and are told there's nothing obviously wrong with you and that there's no need to look farther, that basically means being sentenced to a life of sometimes serious disability. So what do you do then? Especially, what do you do when there's no one to earn a living instead of you, cook and clean for you, and do everything else you're supposed to be able to manage, but increasingly can't? How can a rational patient not look for more comprehensive treatment, when the alternative is to lose their ability to function?

It's a huge problem when people turn to quacks and quack therapies. But too often it's a symptom of a real cause, and I think it's wrong to dismiss that cause as dissatisfaction or hypochondrism rather than medical issues that apparently occur on a wide scale, are barely understood, and need to be studied and treated far more intensively than they are.
posted by trig at 11:08 AM on July 26 [68 favorites]


Or like maybe if we all didn't have to work ourselves to death and could get away with taking it easy whenever we needed to then we wouldn't need to see a doctor at all.
posted by bleep at 11:12 AM on July 26 [12 favorites]


(True, though you still might want to be able to take that leisurely stroll with your friends.)
posted by trig at 11:15 AM on July 26 [9 favorites]


I agree with your wider point about American work culture, bleep, but as someone with medical issues and a partner to someone with multiple disabilities and chronic conditions, adequate rest is helpful but 100% not going to eliminate the need for competent medical care for a LOT of us and those kind of statements do a lot of harm.
posted by the thorn bushes have roses at 11:16 AM on July 26 [28 favorites]


Yes I was 100% agreeing with you sorry if that didn't come through
posted by bleep at 11:16 AM on July 26


A few years back I had a long conversation with someone at work about their chronic Lyme disease. I had never heard of the “chronic” version before, and started getting more and more wary as she went into details about her treatments and how everyone in her family also was diagnosed with it and other rare diseases. I was feeling sympathetic for her, but then she started suggesting that I should get tested (despite going my whole life without a tick bite). She mentioned the name of the doctor who prescribed long-term antibiotics for her family, and when I googled him out of curiosity and it turned out he was a VETERINARIAN.
posted by galvanized unicorn at 11:27 AM on July 26 [18 favorites]


It would be interesting to find out if these various wellness cults we have here in the US exist in countries where healthcare is more normalized and readily accessible to everyone.

I am absolutely a huge supporter of the universal healthcare that we have here, but it is not a magical cure for all health-related problems. Unfortunately accessible healthcare does not mean diagnosing subtle chronic diseases is easier here. In some ways it might even be harder than for someone who can access adequate healthcare in the US, since you can't doctor shop to the same extent here in Canada (need a referral to see any type of specialist, for example, and the GP won't give you one if they don't think it's bad enough to need one). And anecdotally, if you aren't dying or screaming in pain, most doctors around here really don't care about helping you figure out any kind of chronic symptoms like fatigue or joint pain. They're just like "rest more and take an aspirin, you're fine". I can't speak for all Canadian doctors or anything, or whether it's any different elsewhere, but that's been the experience of many people I've known who were trying to sort out any kind of chronic symptoms.

Anyway, I don't know about "wellness cult" stuff but chronic Lyme is absolutely a thing here, in the sense that many people say they are dealing with major health issues after a Lyme infection, and have had trouble properly diagnosing/resolving them. What the medical facts around it are, I'm not sure, but whatever the cause of the symptoms, it's disrupting people's lives in a real way.
posted by randomnity at 11:34 AM on July 26 [12 favorites]


Anyway, I don't know about "wellness cult" stuff but chronic Lyme is absolutely a thing here, in the sense that many people say they are dealing with major health issues after a Lyme infection, and have had trouble properly diagnosing/resolving them. What the medical facts around it are, I'm not sure, but whatever the cause of the symptoms, it's disrupting people's lives in a real way.

And it seems, people who have not necessarily had a Lyme infection but find a reflection of their medical concerns (and experiences with the medical system) in the chronic Lyme community.
posted by dismas at 11:40 AM on July 26 [1 favorite]


My husband had lyme disease and he took antibiotics and he doesn't have lyme disease anymore. I am confused by chronic lyme.
posted by all about eevee at 11:47 AM on July 26 [5 favorites]


I mean, it seems like "chronic Lyme", etc meets a lot of different needs for people - some people have unexplained physical illness/symptoms/disabilities and are looking for a treatment path in a society that is basically unwilling to provide one, some people have mental illnesses that somatize*, some people are part of a subculture where being "ill" in this way is normal and valued, some people are just without hope and lonely because our society is without hope and lonely and an illness narrative explains their experience to themselves**.

I think that the scandalous narrative gets the most media play - those situations in a particular subculture where being vaguely ill in an undiagnosable way is part of fitting in. Like, hanging around hippies/culturally left spaces/etc, I believe that this really does happen - that there's a narrative about certain relatively rare conditions that makes it seem normal or even virtuous to have them and immoral to question anyone's diagnosis.

~~
On that note: I had Lyme disease in my teens. It was diagnosed very late when I developed some exciting, rapid-onset neurological problems. I was treated with IV antibiotics for weeks and weeks. Most of my symptoms disappeared, but I still have some problems with numbness and paresthesias.

My assumption about at least some of the "chronic Lyme" stuff is that it's really post-Lyme - that's why people no longer test positive for Lyme and antibiotics don't help. I have post-Lyme symptoms, fortunately not really bad ones, but they don't seem to be curable.



*I can totally do this! I get real, physical, not-obviously-anxiety-driven symptoms that are treated by treating anxiety. I went through a bunch of tests in my twenties before this became apparent.
**Long ago I went to a Serious Psychiatrist to see if I needed Serious Psychiatric Treatment, and he said to me that he thought my main problem was that the actual material conditions of my life were making me unhappy, and that if I changed them I would feel better. Fortunately, I was able to make some big changes in my work and living situation and I did indeed feel better.
posted by Frowner at 12:01 PM on July 26 [30 favorites]


Yeah, there's a lot of things Western Medicine does not do well. I know a couple of families with teens who were caught up in the whole Lyme thing. Both kids got better, thank goodness (one with homeopathy, sigh). But this episode of Invisibilia goes into how hard it can be to treat some of these truly-felt-but-sort-of-not-real conditions. Brains and bodies are weird, and they misfire in weird ways sometimes.
posted by rikschell at 12:16 PM on July 26 [3 favorites]


some people have mental illnesses that somatize*

The "it's all in your head" response is of course horribly dismissive, but, like, for real you can tell when I've passed a certain level of stress in my life because the skin on my neck attempts to turn itself into cordura. Not to mention the uptick in migraines. Stress is a condition with physical correlates. I wish we were able to recognize that without the crippling background of "it's all in your head."
posted by praemunire at 12:31 PM on July 26 [25 favorites]


In the past, I've wished I had a chronic physical illness. I live with mental health issues related to childhood trauma, and grew up with a family that doesn't believe in mental illness.

I was accused of being lazy, and any negative emotion was said to be my own fault, because our new age philosophy claims that you have control over your emotional well-being and even circumstances by simply deciding to be happy and successful.

This cult of positivity and self determination made my childhood problems my fault. My sadness and grief were proof that I was too lazy to actualize myself properly.

If my suffering was physical, I would have gotten a break. This was even explicitly articulated: "you are able bodied and young and healthy, you have no excuse to act that way".
posted by idiopath at 12:37 PM on July 26 [34 favorites]


Ahhh...the username makes sense. I empathize.
posted by j_curiouser at 12:48 PM on July 26 [1 favorite]


The "it's all in your head" response is of course horribly dismissive, but, like, for real you can tell when I've passed a certain level of stress in my life because the skin on my neck attempts to turn itself into cordura. Not to mention the uptick in migraines. Stress is a condition with physical correlates. I wish we were able to recognize that without the crippling background of "it's all in your head."

Yeah, just because it is caused by anxiety/depression/whatever doesn't mean that you can just say "oh, this isn't real" and it turns off.

And also, you don't always know that it's caused by anxiety/depression. Like, only after therapy and some a-ha moments have I become able to say, "I think I am depressed right now". Before all that, I wouldn't feel depressed, I'd just have physical symptoms. Now I get some physical symptoms but they're fewer and I can ignore them more because I can identify my feelings better. But I sure did not grow up with the ability to feel and identify feelings because Childhood Bad Stuff.

But anyway, the depression physical symptoms can be kind of hard to tell apart from other physical symptoms, so I'm actually a little cavalier about going to the doctor - I'm so used to saying "well, this symptom is probably because of feelings and I should not focus on it since that makes it worse" that it's difficult to switch over to "let's get a physical exam".

People say, "it's all in your head" and they mean "you're not really experiencing it, it's imaginary" when actually you get the migraines or the neurological symptoms, etc. Also, of course, there's a suggestion that if you were a better person you wouldn't be depressed/anxious, or that you're even worse than the typical [lazy/bad/etc] depressed person because you're just sort of showboating by pretending to have physical problems.
posted by Frowner at 12:55 PM on July 26 [26 favorites]


This is a really well-written article!

I mentioned last time we had a tick/lyme post that I have had the infection twice, and that the second time, the antibiotics didn't get rid of it right away, so the bulls-eye rash returned several months later, making the doctor who examined me think I had a rare form of cancer. That was in itself a shocking experience. But it also told me that Lyme disease is a weird infection that can take weird shapes. In this case, my own instincts saved me from a lot of trouble, because I insisted on being checked for Lyme disease. I know I was in a sense lucky that the rash came back, because it doesn't always do that. So I completely acknowledge that there is such a thing as untreated, or insufficiently treated Lyme disease.

That said, in the period where I was infected twice, I also went through a lot of stress, which is exactly why I didn't register that a tick had bitten me. I've had lots of ticks, and I have to say that an adult person who showers every day should be able to find a tick, even a nymph, before it becomes an issue (within the first 24 hours, you are not at risk). If you are camping, or a child, or a person who showers less regularly, or an old or obese person who can't reach every nook and cranny in their body, Lyme is a serious risk and you should be extra alert.
What I'm saying is, that when I had Lyme for several months, I can't really say if it was the infection or the extreme stress that caused my memory issues, joint pain, fatigue and asymmetric face. And was the cure just the antibiotics or also a sense that I needed to take better care of myself?

Month-long antibiotic treatments for an un-diagnosed illness is almost the definition of insanity, IMO.

I don't take ticks lightly now, I cover up completely when I walk the dog, even during the current heatwave, and I check every part of my body for the critters when I return from the woods. I wish there was a vaccine, and I like the idea of feeding the mice with vaccine. But I do think this is a bit like when multitudes suddenly have imagined allergies, and create problems for those who really do have allergies because nobody believes them.

On the other hand, what ideopath wrote is also thought-provoking. Maybe if you are in a culture where psychological illness is not acceptable and you really need care, "Lyme", or something similar is your last resort.
posted by mumimor at 1:00 PM on July 26 [3 favorites]


She mentioned the name of the doctor who prescribed long-term antibiotics for her family, and when I googled him out of curiosity and it turned out he was a VETERINARIAN.

Okay, surely that’s not legal?
posted by Secret Sparrow at 1:00 PM on July 26


My husband had lyme disease and he took antibiotics and he doesn't have lyme disease anymore. I am confused by chronic lyme.

Chronic lyme disease is theorized by believers as a lingering infection. But there's a thing that is accepted by the broader medical community called post-treatment lyme disorder, which is mentioned in the above article. The difference between this and chronic lyme disease is that post-treatment lyme is thought to be an immune system issue rather than an ongoing infection. It's still not super well understood, but it doesn't seem to be quackery - it's on the CDC website.

Lots and lots of people also get these terms mixed up, which adds to the confusion.
posted by showbiz_liz at 1:02 PM on July 26 [14 favorites]


The comments on the article are quite interesting, maybe specially this one:

I am the Todd Murray, son of Polly Murray, written about in the article. I am an emergency physician. I had a classic case of Lyme, and my tests have always been unequivocally positive. When Lyme was first investigated and described, in 1976, they did not know it was caused by a bacterium - the spirochete was not discovered until 1981. I went untreated for about 14 years. I have had forgetfulness, atrial fibrillation in my 20s, brain fog, scrambled sentence formation, word finding difficulties. However, none of these stopped me from getting through college, a post graduate pre-med program, medical school and residency, and practicing in a profession where both high stress and sleep deprivation are the norm. I eventually did seek antibiotic treatment, and given ceftriaxone IV and an extended course of antibiotics by mouth. I did not have a Jarisch Herxheimer reaction, and in fact I really did not notice any change at all after the antibiotics. I think the damage had largely been done, I had lingering doubt for a number of years whether my illness was sufficiently treated, and to this day have some anger that the physicians who knew I had Lyme disease back in the 70s never bothered to prescribe me antibiotics once it was known that Lyme was bacterial. But after a point, I just let it go. The antibiotics did not fix anything. I had a career, a family- I moved on. As a physician I have diagnosed many children and adults with acute Lyme disease, sometimes doing a spinal tap in the ER to diagnose acute CNS Lyme. I currently practice in an area with a high prevalence of tick-borne illness, and at this time of year we see cases of Lyme and anaplasmosis on a daily basis, and remove a lot of ticks from understandably anxious members of the community.. But in my career I have also seen people who are certifiably crazy with complaints of chronic Lyme. This article accurately portrays a segment of patients whose diagnosis, response to treatment, and disease process (e.g an actual swollen joint) cannot be objectively measured. The circular logic, treatment without any endpoint, and use of therapies that have not been established to be beneficial by any clinical trial, are disturbing to me as a clinician, and as one who no doubt had Lyme with chronic manifestations. These patients and those who treat them are no longer in the realm of medical science- a medicine man deep in the Amazon might arguably do a better job in caring for them.
posted by mumimor at 1:12 PM on July 26 [17 favorites]


I used to follow a dog training blogger (not the one interviewed in the article, funnily enough

Did she have a Bouvier? I think we might have followed the same person. I was always very impressed with the grace with which she approached the subject, and yes, it was very clear that she was certainly really ill and really honestly trying to figure out what the heck was wrong--whether or not Lyme was really involved.
posted by sciatrix at 1:13 PM on July 26


I truly empathize and understand why diagnosing yourself or being diagnosed with chronic lyme disease feels like such a relief. As the article mentions, and as many have mentioned here, getting a diagnosis for fatigue or any number of complicated symptoms is soul-crushing. Even people at the top of the social hierarchy (i.e. wealthy, white, cis-male folks with bodies regarded as acceptable, e.g. not fat, who have the time to take off work and healthcare coverage), even those jackpot winners, can be brushed off by the medical establishment.

The social determinants of health — economic, environmental, educational — and effects of social stigma play an outsized role in how we physically feel. I'm so incredible sympathetic to the desperation of trying to get an accurate diagnosis and appropriate treatment, especially because historically we don't believe women about their bodies. I have hypothyroidism and for years doctors wouldn't prescribe me medication for it because they saw my fat body and decided I wanted the medicine for weight loss purposes and was just lazy. I had an endocrinologist who tested my blood sugar twice (it's normal) before she'd test my thyroid numbers, and when they came back clearly (not subclinical) marking me with hypothyroidism, like it's a slam dunk diagnosis, she refused to diagnose me and gave me a lecture about not eating fast food. I was at the height of orthorexia and hadn't eaten fast food for ten years and the thought of eating "unclean" food terrified me. So yeah, doctors are often fucking assholes!

At the same time, eyerolled so hard at this: Her recent posts include one on an experience she calls “song iteration” — having songs stuck in her head for “days, weeks, even a month” — which she describes as a “maddening symptom of neurological Lyme disease.” and at all the hypothyroid websites out there that list symptoms like this that not a single person who is alive would fail to hit at some point and insist it's all a big medical conspiracy, they do so much harm and make me equally as furious, I AM SO FURIOUS RIGHT NOW AT SO MANY DIFFERENT THINGS!

And did you know that kind of fury can make you feel a lot of different symptoms? Can't win, man.
posted by the thorn bushes have roses at 1:20 PM on July 26 [19 favorites]


Chronic lyme disease is theorized by believers as a lingering infection. But there's a thing that is accepted by the broader medical community called post-treatment lyme disorder, which is mentioned in the above article. The difference between this and chronic lyme disease is that post-treatment lyme is thought to be an immune system issue rather than an ongoing infection. It's still not super well understood, but it doesn't seem to be quackery - it's on the CDC website.

Lots and lots of people also get these terms mixed up, which adds to the confusion.


Thank you for explaining this! I did not realize these were distinct things and an immune disorder sounds much more plausible than an ongoing infection. Most people I've heard about just talk about the symptoms, not the underlying cause (beyond "Lyme").
posted by randomnity at 1:22 PM on July 26 [1 favorite]


The "it's all in your head" response is of course horribly dismissive, but, like, for real you can tell when I've passed a certain level of stress in my life because the skin on my neck attempts to turn itself into cordura. Not to mention the uptick in migraines. Stress is a condition with physical correlates.

Yeah, I have trigeminal neuralgia, but it only manifests during the spring and times of extreme stress. Pain conditions can be extremely weird. A pain researcher named Lorimer Mosely does some really interesting work on the connection between the mind and pain. Even when the physical cause of pain is gone, pain can beget pain because the pain signals start getting wired into your brain, sort of like a worn-down hiking trail. Once you've created these pathways it's terribly hard to overcome them. And then you can have triggers in your surroundings that you start associating with pain and activate these pathways. That's why people with approaches like Mosely's refer to pain as a biopsychosocial process: it involves physiology, psychology, and one's life circumstances.

Addressing pain requires the short-circuiting of these adverse neural pathways and creating new ones, forging a new hiking trail, so to speak. And the first steps to creating those physiological changes often involve psychological practices. Which a shitty doctor will use as proof that pain is all in one's head.

Anyway, I would not be surprised if some chronic illnesses work the same way: they started with something, but after that something left the physiological symptoms remain because they've been worn into one's body.
posted by schroedinger at 1:23 PM on July 26 [16 favorites]


It would be interesting to find out if these various wellness cults we have here in the US exist in countries where healthcare is more normalized and readily accessible to everyone.

France used to fund homeopathy. It was even viewed as a kind of success because it functioned as a mostly harmless go away pill (with some placebo possibility) that didn't threaten antibiotic effectiveness or lead to other iatrogenic diseases from over medicalization. So they basically invited a wellness cult in the front door and used it somewhat effectively as a cost-cutting triage measure for vague complaints.
posted by srboisvert at 1:29 PM on July 26 [13 favorites]


The NHS in the UK did also until very recently.
posted by BungaDunga at 2:25 PM on July 26 [2 favorites]


Reading this article and the discussion reminds me of Todd Haynes' underrated movie Safe (1995).
posted by Nelson at 2:47 PM on July 26 [5 favorites]


I'm predicting Valley Fever will be the next Lyme, in both the legitimate and conspiracy ways.
posted by bongo_x at 3:03 PM on July 26 [2 favorites]


Yes sciatrix, that's likely the same blogger - I came to her blog through her experiences dog training while ill and it was my first exposure to the world of chronic Lyme.

I think this article at the very end touched on a couple of the intersecting issues - one is that we (and I mean "we" in the cultural sense of Western culture and US culture) both distrust doctors and expect them to have all the answers. So in areas where the science is still evolving, like the brain-body connection as well as in inflammatory syndromes (both of which I suspect intersect with chronic lyme), it is easy to assume that there *is* an answer if only medicine would just listen to us.

I've seen this in the unexplained infertility community - my RE said that something like 50% of her patients go through a battery of tests and there is no current explanation why they can't get pregnant. In her reasoning, this is a good thing! No physical explanation means that it's actually more likely that you will get pregnant in the future. But having a diagnosis feels like being in control. You can say "oh, I have male factor infertility" - you have a community, a plan of attack, and concrete statistics to guide your way forward. But for those with no current medical explanation, it can be really easy to fall into the spiral of more and more "cutting edge" testing hoping that *anything* will turn up as an explanation (and of course there's a doctor behind that test waiting to sell you an expensive treatment, although at least in this case it's usually an actual endocrinologist and not a vet!)
posted by muddgirl at 3:31 PM on July 26 [11 favorites]


This article was great, and the linked NYRB article about being a doctor treating patients who say they have chronic Lyme was even better:

And cure is tricky; sometimes I have seen it, but often it eludes. I have frequently been able to listen to families for whom cures are not forthcoming (parents of children with relentless neurodegenerative disorders, for example, or of kids whose cancers progressed despite the best available therapies). They appreciated good communication and the healing power of having their realities acknowledged, but also they wanted their children to survive.
posted by peppercorn at 3:52 PM on July 26 [3 favorites]


(This conspiratorial register is not uncommon and is perhaps gaining traction. Earlier this month, a New Jersey congressman demanded an investigation into whether the government had developed Lyme-infected ticks as part of a secret biological-weapons program.)

House orders Pentagon to review if it exposed Americans to weaponised ticks (Guardian)
The House approved an amendment proposed by a Republican congressman from New Jersey, Chris Smith, instructing the defence department’s inspector general to conduct a review of whether the US “experimented with ticks and … insects regarding use as a biological weapon between the years of 1950 and 1975”. The review would have to assess the scope of the experiment and “whether any ticks or insects used in such experiment were released outside of any laboratory by accident or experiment design”. The amendment was approved by a voice vote in the House and added to a defence spending bill, but the bill still has to be reconciled with a Senate version.
Lyme disease: is a solution on the way? (Guardian)
As a former martial arts world champion, who trained daily and enjoyed camping and hiking at weekends, Stephen Bullough had always prided himself on leading a healthy life. Like most people, he thought very little when he was bitten by a tick on a camping holiday close to home in Wigan in 2014, never suspecting that this tiny bite would unleash an infection in his body that would one day leave him permanently incapacitated. [...] But a year later, Bullough began to experience sudden seizures and muscle weakness, leaving him with severe difficulties walking. Over the past three years, his condition has rapidly deteriorated, leaving him unable to see, permanently bed-bound and often suffering multiple seizures at a time.

[...] Bullough was eventually diagnosed with Lyme disease, an illness caused by various species of bacteria in the genus Borrelia that live in the guts of ticks. Once transmitted to humans, it can attack the immune system and lead to serious health complications such as arthritis, meningitis, neurological problems, even heart failure. While Lyme disease can sometimes be treated with antibiotics if detected early, not everyone responds and for patients such as Bullough who have developed chronic symptoms, there is currently no cure. [...]

Many of these patients feel neglected by the medical community due to the controversy that has long surrounded what is known as chronic Lyme disease. Despite numerous studies which have emerged showing that large numbers of patients suffer from chronic or Post-treatment Lyme disease syndrome (PTLDS), with symptoms persisting and worsening despite initial antibiotic treatment, sectors of the medical community both in both the US and the UK have refused to accept that the condition exists. A recent opinion piece in the New York Times, which claimed that PTLDS was not a problem, provoked widespread outrage.

“One big challenge has been that a considerable part of the medical community does not believe there is a problem,” says Kim Lewis, professor of molecular microbiology at Northeastern University in Boston, Massachusetts. “Chronic Lyme is kind of a dirty word. But studies from Johns Hopkins University estimate that 10-20% of Lyme patients suffer from that condition.” [...]

As a result, most funding for research into new treatments comes from private foundations rather than government bodies. But there are signs of hope on the horizon. Scientists believe that one of the reasons chronic Lyme disease exists is because conventional antibiotics are not powerful enough to kill all traces of Borrelia within the body and the remaining microbes – known as persister cells – repopulate and spread to other tissues.

[...] Scientists are hopeful that they have identified a compound that could eventually prove to be the first treatment for PTLDS. Studies screening thousands of drugs to see which might prove to be lethal to Borrelia and safe for human tissue identified disulfiram, a drug typically used to treat alcoholism, as being particularly fit for purpose. [...] At the moment, Columbia University Irving Medical Center in New York is recruiting patients for the first clinical trial of disulfiram for PTLDS. If it proves successful, Lewis hopes that having an effective treatment will go some way to ending much of the stigma surrounding PTLDS in the medical world.
posted by Little Dawn at 4:15 PM on July 26 [4 favorites]


My ex once had a terrifying, and utterly unexplained, bout of gut pain that led to him losing so much weight he looked starved on just a few months. After we went to a specialist, they ran all their tests then the guy bounced out to tell us "well good news it's not cancer!" And that was great, but then he could not tell us what it was. Or how to stop it. Or anything at all. And he seemed puzzled and resentful that I wasn't kissing his hand in gratitude. And had no recs for what to do next.

Whatever it was soon thereafter got better, no thanks to anything but luck. Which means it could come back at any time because we have no fucking idea what was wrong.

It's a fucking nightmare to a. Have your body turn on you and then b. Have the people supposed to help you just fucking shrug at you.

"Dr., will this kill me? What do I do now?"
"Huh well I have no idea. Be sure and pay your copay on the way out "

Fuckers.
posted by emjaybee at 6:49 PM on July 26 [10 favorites]


"When you go to a doctor, explain that this is happening and that it's interfering with your ability to live even a not-very-intensive daily life, and are told there's nothing obviously wrong with you and that there's no need to look farther, that basically means being sentenced to a life of sometimes serious disability. So what do you do then?"

I think it's also DRAMATIC underinvestment in women's health in particular, to the point that there are operations of the female reproductive system we don't understand, and TONS of common medications' doses are based on men and have no dosing differential for women, and symptoms for things like heart attacks are based on how they manifest in men and even though it is WELL KNOWN that women show symptoms differently and a small section of the medical profession has been trumpeting this knowledge for thirty years, it's an uphill battle to get it taken seriously even by other medical professionals.

I have been on the thyroid-go-round where my DOCTOR is the one saying, "Gosh I hope this test comes back that you have a thyroid problem" because I am doing ALL THE THINGS correctly in terms of diet and exercise but my weight will not reduce and it doesn't seem to matter how low I drop my calories, and I have TERRIBLE digestive problems on top of it. Honestly I think there's an issue with my hormones -- these problems with weight and digestion started after my first childbirth, and intensified after each pregnancy and childbirth and breastfeeding stint, and my entire digestive system now seems in thrall to my monthly hormonal cycle, with me ravenously hungry at some times and unable to eat at all (but not losing weight) at others and straight-up vomiting everything I eat (but still not losing weight) at yet others ... but my GP and my ob/gyn and the endocrinologist who saw me haven't been able to point to anything helpful except for "maybe it's your thyroid?"

(Also the medical world is WEIRDLY UNCONCERNED about vomiting everything I eat, as long as I'm not losing weight. This was also true during all three of my pregnancies, when I had hyperemesis gravardium and had to be hospitalized over and over and over for IV rehydration and I had to fight to get zofran because WHY NOT JUST GO TO THE ER ONCE A WEEK THAT'S A GREAT USE OF RESOURCES. Nowadays I'll throw up non-stop for two or three days when I'm ovulating and everyone's just like ¯\_(ツ)_/¯. I'm concerned I'm doing permanent damage to my body! I have a sore throat all the time! Sometimes when I'm driving I have to pull over to puke! And everyone with an MD is just like, "Well, you're not losing weight, so it's not an eating disorder, so ¯\_(ツ)_/¯.")
posted by Eyebrows McGee at 6:52 PM on July 26 [23 favorites]


I'm so sorry Eyebrows McGee!

I hope I'm not hogging this thread, but i have one last thought about gender and healthcare. Testosterone supplementation for men with normal T-levels is just as woo as chronic Lyme but pharmacology companies and some actual endocrinologists were more than happy to cater to all the aging men who are feeling symptoms as specific as "Depression, Difficulty concentrating, Fatigue, Difficulty sustaining erections"
posted by muddgirl at 7:12 PM on July 26 [3 favorites]


Nowadays I'll throw up non-stop for two or three days when I'm ovulating and everyone's just like ¯\_(ツ)_/¯.

I hope to god there’s a reason (medical, or personal preference) that you’ve opted not to use hormonal contraceptives to eliminate your period. Because it is too damn common for doctors to just not even suggest it as an option, even when one’s period related symptoms are terrible.
posted by Secret Sparrow at 7:17 PM on July 26 [3 favorites]


The NHS in the UK did also until very recently

Still does. It’s actually very good, my brother used to work there (on the admin side). He’s an engineer and completely sceptical about homeopathy, but the patients they saw were a combination of palliative patients seeking some complementary therapies, non-adherent patients being helped back to re-engagement with mainstream medicine (ie diabetics, asthmatics with multiple admissions to hospital due to non taking meds), and patients with medically unexplained symptoms who had all spent years pursuing invasive testing, including multiple exploratory laparotomies etc, who were now using homeopathy instead.

Yes it is a placebo, but the effective part of the therapy was the two hour long appointments, allowing the patients to feel heard and taken seriously by medical staff. Worked wonders on some spectacularly difficult to treat patients. The homeopaths are mostly GPs with an interest, so all of them are properly medically qualified and not likely to suggest anything in conflict with orthodox medicine. Nobody was curing cancer with sugar pills.
posted by tinkletown at 8:42 PM on July 26 [8 favorites]


My own experience with Lyme, in the hope that it will help someone: in the fall of 2017 I had a very brief illness that I thought was flu. One night I had chills and it took me a few hours to get warm, with the heat up to 80, under several blankets. However, within a few days I was feeling OK again and thought nothing more of it. I suspect that was the initial response to the tick bite. I should note that I was living on the North Shore of Boston at the time and did a fair amount of hiking and biking in the woods.

A few months later, I noticed that my balance seemed just a little off and that I was dropping things more frequently than normal. I thought: "oh crap, Parkinson's." I went to my primary care doctor, who ordered several blood tests including Lyme. The initial Lyme test was ambiguous, and so he ordered a Western blot, which showed an unambiguous result of Lyme antibodies. I did a 21-day course of doxycycline at that point.

Since that time, the neurophysiological issues have mostly abated. However, as of a few weeks ago, I have a frozen shoulder; my right side has always been stiffer than the left and it got exponentially worse over a period of a couple of months. Although the causes of frozen shoulder aren't known, I've heard that the Lyme spirochete likes the neck and shoulder area, and the problem has come up on some of the Lyme forums. I saw a doctor who wanted to do a lavage injection together with a cortisone shot. I went home, Googled, and saw that the Lyme community warns against steroids, which are immunosuppressants and give the spirochete rats a chance to come out and play.

So I won't be doing anything involving steroids. I may still do the lavage if the doctor agrees not to accompany it with a steroid shot, and I'm doing some PT exercises a couple of times a day to keep things moving as best they can. I can't hook a bra in the back and can't raise my arm over my head; it's a pain in the ass. I'm in a country where Lyme is unknown, and honestly, I think my chances of being taken seriously about the steroid issue are better than they would be in the U.S.

Will I get sicker? I don't know. I'm not young, so something will get me eventually. However, it seems like a lot of people who've been tested positive for Lyme are very, very ill, and I'm certainly not going to question their experience. I've also heard that the spirochete "hides" so that test results can be ambiguous.
posted by Sheydem-tants at 9:20 PM on July 26 [1 favorite]


"I hope to god there’s a reason (medical, or personal preference) that you’ve opted not to use hormonal contraceptives to eliminate your period."

It makes the vomiting so, so, so, so, so much worse, basically. (For some reason this is also not a medically relevant symptom that might shed light on what I suspect is a hormone issue. That's just a side effect of the medication! ¯\_(ツ)_/¯ )
posted by Eyebrows McGee at 10:29 PM on July 26 [3 favorites]


I've had Lyme--for real Lyme--probably three times, the first when I was going into seventh grade and developed chronic headaches that medications couldn't touch. I'd lie in a dark room for hours and hope to sleep in the middle of the day just to escape it. This was NJ in the late 90s and it took weeks for someone to think of giving me a Lyme test, after subjecting me to all sorts of MRIs and other tests.

The second time was in my 20s. I developed a bull's eye rash, the only time I had one.

The third time was last summer, I think. I had a week of acute illness followed by weeks of horrendous physical weakness and heart palpitations. At the time, I was going to a low-cost health clinic because they were gender inclusive, but they dismissed me and seemed to think I was med seeking. I could no longer walk the two blocks with my child to school. I went back to an old doctor and asked explicitly for a test for Lyme and mono and came back positive for both. My doctor cautioned me that due to having Lyme previously, she was uncertain whether the problem was an active Lyme infection or whether I just had abnormally high Lyme antibodies from a previous infection, but it was a case when she felt better to medicate it. I did, too. I went on a very long course of two antibiotics, because I'm allergic to most of the first-choice antibiotics for Lyme.

It sucked and I had a lot of stomach problems for a long time after. But a year later, it's largely just a memory and I'm finally back to normal health.

Tick checks are still hard, though I've chopped off all my hair in the time since. I'm covered with atypical moles and it makes it difficult to find ticks.

My mother-in-law is a chronic Lyme nutbar. She used to go to a Lyme doctor that of course took no insurance who told her that everyone in her family had Lyme and several co-infections. My brother-in-law was having seizures and has epilepsy but their doctor missed diagnosing it because of course, she thought, the seizures were from Lyme.

I live in a high Lyme county in a high Lyme state, and also in an area with high rates of medical woo. And I can see the weird ways that the anti-vaxx community (who refuse bug sprays and tick checks and put clove oil on their children's tickbites) and the chronic Lyme community intersect, and how they work in tandem against Lyme vaccines. My mother-in-law thinks I should quit gardening, get rid of my bird feeders, and never take my child for a summer hike because of Lyme. The antivaxx folks think I shouldn't put "poisons" in us and that it's all overblown. Fuck the lot of them. I want to be able to live a normal, active lifestyle without worrying about being crushed by headaches or fatigue all summer. I want a vaccine for this stupid illness, for me and my kid.
posted by PhoBWanKenobi at 6:29 AM on July 27 [13 favorites]


I have a chronic auto-inflammatory illness, ankylosing spondylitis. It is a disease that can really impact our lives through pain and fatigue, cause permanent damage to the spine, and really suck in many ways. Unlike many rheumatological diseases, there is not a clear immune marker test for it--there is a gene that is correlated, but that correlation is only ~80%, so you could have the gene but not have the disease or vice versa. Ultimately, the diagnosis is primarily still functional and often requires the disease to advance a few years before an actual diagnosis will be given. The good news is that there are a number of excellent, effective, low-side effect treatments among the modern biologic drugs, and more are being developed all the time.

Back in the glory days of blogs, there were several good blogs by my fellow spondys. One, by a young woman, I particularly appreciated because we had a lot in common in terms of our symptoms and both being students. She was being treated. Life was good. Then some bad stuff happened in her personal life, her health took a dive, and suddenly she was declaring she didn't have AS, but chronic Lyme, and she was giving up the effective treatments by her rheumatologist for long term IV antibiotics from one of these quack doctors. It was awful.

My point is that the choice is not necessarily between "chronic Lyme" and psychological disorders as both the article and discussion here suggest. I wouldn't be at all surprised if some of the people in this story have AS, RA, Ehler-Danlos, or any one of a number of treatable, manageable conditions. They may well have been dismissed by doctors who are jerks. I was dismissed by both primary care doctors and my first rheumatologist (who told me my pain was due to trauma from sexual abuse--which I had never suffered) before finding a much better rheumatologist. Rather than persisting and getting actual treatment, these folks gave up and found a cult online. I feel bad for them. I wish our medical establishment was better. But I wish they would get actual treatment that would help them.
posted by hydropsyche at 7:05 AM on July 27 [14 favorites]


Thanks for linking this. I first heard about this I think on probably an AVClub thread on the documentary about Kathleen Hannah, where a commenter expressed sadness that Hannah had probably been duped into thinking she had chronic Lyme by a quack; had no idea this was a thing and I wanted to learn more about it.
posted by pelvicsorcery at 12:14 PM on July 27 [1 favorite]


“Right away, she said, Lehman started her on around 30 supplements and began doing ozone therapy, a procedure in which blood is drawn, mixed with ozone, and then reinjected into the body. Younger did ozone for nine months or so, and it always made her feel worse.”

Uhhh that is terrifying. Breathing ozone is bad, please don’t put it in your blood. All you’re gonna get is oxidation products from your blood, right?
posted by Matt Oneiros at 5:13 PM on July 27 [2 favorites]


I so relate to these folks. I have poorly diagnosed autoimmune/ inflammatory arthritis. I have a fair amount of pain and some loss of capability, but the tests are fine, so it can't be that bad, right? I'm a wicked skeptic, and pragmatic, so unless there's some legit treatment I'm missing out on, a diagnosis of fibromyalgia is just a useless label.

The current method of doctor visits is that they have a checklist, and not much time for anything outside that. It hasn't been helpful to me. I do also battle depression, and as soon as that's on the table, any unexplained issues are attributable to depression, as opposed to depression being related to chronic inflammation, trouble with mobility, chronic fatigue, etc.
posted by theora55 at 5:47 PM on July 27 [5 favorites]


Another viewpoint from Meghan O'Rourke, writing in the September 2019 Atlantic.
It is true that Lyme disease has become a term that stands for more than itself. If not an ideology, it is a metonym for all tick-borne illness, for embattled suffering, for the ways that medicine has fallen short of its promised goal of doing no harm—in this case by dismissing and mocking suffering patients. As Wendy Adams of the Bay Area Lyme Foundation put it to me, “We now have incontrovertible data that says these people are legitimately sick.” Just because a symptom is common and subjective—as fatigue is—doesn’t mean that a patient can’t tell the difference between a normal version of it and a pathological one. After all, we’re able to distinguish between the common cold and a case of the flu. When I was very ill, I felt like a zombie—more important, I felt categorically different from myself. By contrast, today I have aches and pains, and I’m tired, but I am more or less “me.”
posted by Jesse the K at 1:58 PM on August 17


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