Lyme Is 'All in Your Head' – A Wake-Up Call to Mental Health Professionals | Hacker News Reader

Lyme Is 'All in Your Head' – A Wake-Up Call to Mental Health Professionals

madinamerica.com

30 pointsjrs23547 comments

I'm unclear on why this is on the frontpage of HN. This seems to be another medical advocacy group that are searching for explanation of their symptoms, and have convinced themselves of a cause.

There have been several studies on their claims, none of which show that their symptoms are caused by a persistent infection:

> "The assumption that chronic, subjective symptoms are caused by persistent infection with B. burgdorferi is not supported by carefully conducted laboratory studies or by controlled treatment trials. Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted."

http://www.nejm.org/doi/pdf/10.1056/NEJMra072023

It doesn't help that the article is written by someone who apparently is working hard to sell books about how to treat this - https://lymemadness.ca/

I had lyme for a few months and it was just awful. My brother had it undetected for nearly a decade and had an incredible number of muscle and joint issues, including surgery to burn nerves in his back because the pain was too much and he was on all kinds of drugs. After the 12th doctor he went to over the years, one finally tested him for lyme and he had more than 20 times the highest normal limit for lyme infection. It took 9 months on 8 simultaneous antibiotics (which destroyed him) to finally get rid of it. He's still doing follow up blood tests now a few months later. This is a real problem and it needs to be treated far better than it is now. I only had it for a short while and it completely changed how I thought about myself. My brain was so foggy that I couldn't even remember the names for certain things. I could tell you a steering wheel was round and it turned things, but you could have offered me a million dollars and I couldn't have told you what it was called. Lyme is relatively new in how widespread it is, and it's only going to get worse.

I've been treated for lyme twice. The first time the well known bullseye surrounding a bite mark appeared and is what triggered my first time getting treatment. I believe it was 10 days on a an oral antibiotic. The second time I was treated, I was treated more for preventative reasons. I found a deer tick embedded in by shoulder and took pictures so the doctor wouldn't been weary to possible treat a non-issue with antibiotics. I try not to take antibiotics unless I absolutely need too. Except lyme, if left untreated, can wreak havoc. Sometimes I worry that I either wasn't on the antibiotic long enough or perhaps I've been bitten again. I wish we would focus more time and resources into more easily diagnosing this disease.

'chronic lyme disease' does not necessarily equal 'sequelae from lyme disease': many people getting treated with fuck-off antibiotics for chronic lyme have never actually gotten a diagnosis of lyme

(that is not good)

After nearly 4 years of my battle with Lyme, I finally found a doctor who cured me with an essentially illegal combination of antibiotics (4x the max daily dosage of doxycycline for 18 months). In her words, this will be bad, but not nearly as bad as not treating your Lyme. I haven't had any symptoms for 3 years now and am in best health I've ever been.

Occasionally, however, I am still reminded of how ignorant our medical institutions are about this disease. Recently I switched to Kaiser and during my intake process I mentioned my chronic Lyme, at which point the MD corrected me that there's no such a thing. He explained to me that he has all those years of experience, and that he has had to correct so many people about their misconceptions about Lyme. According to him, Lyme is like fever that you treat once at a time (and no longer than 4 weeks max). After my push back, he called in their in infectious disease specialist, who repeated the same thing, word by word. They even wanted to know the name of my specialist, claiming that it was irresponsible of her to give me that treatment (I didn't share her info).

I don't doubt that these two gentlemen are doing their best to help out their patients. I also realize that some kid in their practice will unlikely be able to shatter their firm beliefs that they had acquired in their decade-long training at prestigious universities. It just makes me sad that hundreds of other kids will be less lucky than I was, and will be left alone trying to figure out what's wrong with them, because obviously it can't be Lyme.

In words of my angel doctor, Lyme is the worst curable disease out there - it's a shame we don't cure more people.

Do you think the antibiotics were just a placebo for you? Maybe the pain you went through while taking the drugs knocked the disease "out of your head", so-to-speak.

The symptoms of Lyme are very real and in my case had physical manifestations on my skin. I highly doubt that "more positive thinking" fixes that kind of stuff.

Edit: just to be clear - the main issues were "under the skin," and very much in line with what's described in the article.

You've never heard of stress rashes? I have a friend who gets them all the time. She gets them after a few weeks of stress, like studying for an exam.

I don't want to diminish your suffering, just that there are other explanations for it. The mind is powerful thing!

I should have made it clear that there's never been any doubt about the initial infection. I had the bull's eye and was diagnosed correctly. The point I am making is about what happens once you finish your initial 10-30 day treatment and the symptoms continue to persist.

From what I know, there's no sure way of diagnosing Chronic Lyme. There is no real proof that it exist. That doesn't mean that the symptoms attributed to Chronic Lyme doesn't exist.

http://www.skepticalraptor.com/skepticalraptorblog.php/chron...

Now, attributing any symptoms like this to hypochondria should of course only be done by a licenced medical doctor. However I also think that there is a great deal of misunderstanding about hypochondria. I believe that hypochondria is quite akin to synesthesia. It's not really by choice as it affects the perception. Emotional or mental states feed back into the perception in a way that can't be distinguished from "real" perceptions. The pain is felt, not "imagined". But triggered in an unconscious way by the imagination. It might be an evolutionary artefact from developing ways to identify bodily problems in moments of distress. And when the cause of the distress is hard to identify it is attributed to something close by.

https://en.wikipedia.org/wiki/Chronic_Lyme_disease#Controver...

These kinds of articles are dangerous. It doesn't help that the author's livelihood comes from treating people who believe they have this illness.

Good link: "... which noted the diagnosis of chronic Lyme disease is used by a few physicians despite a lack of "reproducible or convincing scientific evidence", leading the authors to describe this diagnosis as "the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections."

I travel to Old Lyme Connecticut at least once a week. This is the town where Lyme disease was diagnosed as a separate condition for the first time.

Its also where the illness gets its name.

We have a lot of ticks.

Scientists link invasive barberry to Lyme disease:

- http://today.uconn.edu/2012/02/controlling-japanese-barberry...

The illness is definitely an imitator which is very scary. I've known people who have drooping faces which resembled a stroke / bells palsy and who eventually got the diagnoses of Lyme. I think the problem with Lyme is that its isolated, its infectious but not contagious (spreadable between humans). This appears to reduce the urgency of research. That said, the bacteria hides and destroys a person mentally and physically.

Small nitpick: Lyme doesn't mimic Bell's palsy, it can cause it. Source: my face during initial onset of Lyme, September 2000. Thankfully I got and noticed the bullseye bite mark, and 21 days of amoxicillin took care of it.

This reminds me of Morgellan's disease. Insisting something is real doesn't make it real. I don't know anything... can someone share a more evidence heavy article from the same side of the argument?

The medical profession doesn't just turn it's back on treatable (e.g. profitable) diseases.

I don't know either, but the presentation was a little off-putting to me as well. It seems somewhat odd to refer to the "journey" you took with your son as "the hero's journey".

Yes it does, all the time. Before Diabetes was a known condition, it was considered a mental disorder. Then diabetes became widely understood, but for a short time hypoglycemia was considered a mental disorder. Nowadays, hypo and hyperglycemia that are triggered without actual blood sugar level changes, are considered a mental disorder.

I know, because there is someone in my family with that last one. But if you do enough research, it turns out there are specialists out there, who are studying exactly that condition, and claim it to be related to something in the pancreas. But talk to a doctor outside that small circle? Mental disorder.

> Before Diabetes was a known condition, it was considered a mental disorder.

That's a disingenuous comparison. Lyme disease is a known condition, with empirical tests to detect it and clinically proven treatments.

> with empirical tests to detect it and clinically proven treatments

Yes, but the article is about chronic lyme which is not clinically proven AFAIK.

Right, and that's part of what makes chronic lyme so unlikely. We've got a known mechanism for lyme disease, and chronic lyme advocates try to hand-wave away the fact that that evidence of that mechanism can't be found in its alleged sufferers.

That was the point of my post though. Its a moving target. First it was diabetes. Then hypo/hyperglycemia. Then hypo/hyperglycemia when it manifests in ways that aren't understood. Etc

This, to me, sounds like more of the same. First lymes wasn't known. Then it was identified, but chronic lyme is a mental disorder. Eventually, given enough study, chronic lyme will be understood, and then people who don't fit into that paradigm will be the ones with 'mental disorders'. Its a moving goalpost.

I'm not trying to invalidate a lot of smart research in the area. I'm saying that when medical science doesn't know enough about an issue to truly identify and treat it, by the nature of the way science works (step 1 is identifying the problem, and likely that hasn't even been done yet) medical practitioners can't do anything about it in good faith. So they'll suggest you find remediation as best you can, perhaps with therapy to help. Or else you're stuck looking for a specialist in your area, or a less-mainstream doctor who's willing to bend rules and provide home remedies with your symptoms, neither of which the medical profession can ethically suggest to you.

Look at it another way: in order for something to be studied, enough people have to get it to create a statistical sample size, and a large enough sample set to be potentially profitable or worth researching. That means, by definition, there are plenty of people out there with ailments that haven't crossed that threshold yet. Or, even more likely, there are plenty of people out there with problems, but due to the unknown nature of the problem, they haven't been successfully grouped together for study yet, even if they are over the threshold. Who's to say chronic lymes doesn't fit into those categories? Lymes itself is still a relatively new ailment.

After reading the description of "Morgellan's", it actually makes other pseudodiagnoses seem reasonable.

Yeah I mean it's the canonical example. But their support groups and conventions and special doctors all sound very similar.

When I was visiting Colonial Williamsburg they had a medical historian answering questions and the most interesting one to me was "What happened to consumption?"

The disease "consumption" was very common in colonial times, but was never really a formal disease, just a collection of symptoms. As medical science got better it got split into emphysema, pneumonia, and other more specific lung issues.

When I hear about things like Lymes disease, I wonder if we're still at the splitting apart to a more specific diagnoses stage.

One of my friends was basically living this scenario - diagnosed with Lymes disease until he had some new genetic tests done and it was determined that he conclusively had a different neurological condition.

It's hard to remember that in 50 years time they'll look back at shudder at what poor diagnostic and medical tools were available in the 2010s.

Related article that I enjoyed was "Why Your Dog Can Get Vaccinated Against Lyme Disease And You Can’t" http://legacy.wbur.org/2012/06/27/lyme-vaccine

Today it is very easy in most U.S. states to order your own blood tests for Lyme. If you think you may have Lyme, order the test online and go to your nearest LabCorp/Quest office. You'll get your results in 2-5 days. No need to convince a doctor that you need the test. If it's positive, you can take it to them and receive treatment.

"Chronic Lyme Disease", as used by some, simply means "untreated Lyme disease". It is not a chronic vs acute form of the disease.

I don't see why this belongs in Mental Health. Where I Live patients go to their GP's who then either decides to send people to a "regular" doctor for bloodtest and so forth, or establishes a possible mental condition and you are send to a psychiatrist/psychologist.

The brain is physical in nature, and lyme is far from the only disease to exhibit neurological symptoms. A psychiatrist will be biased towards treating as if the root is mental and not physical/viral in nature. Not to mention, they don't have direct access in many cases to do the required tests themselves.

A decade old but not much of the underlying research has dramatically shifted. http://www.nejm.org/doi/pdf/10.1056/NEJMra072023

a friend of mine spiraled into years of undiagnosed anxiety, depression and fatigue and was told by many doctors it was all in her head. a few years later she was diagnosed with lyme disease, got treatment and now has a new lease on life.

The effectiveness of placebo treatment is well documented.

Which raises a good? question: "Should we treat people with placebos [without their knowledge] if it might improve their lives?"

> Every day, in doctors’ offices across the US—as well as in Canada, the UK, Ireland, Amsterdam, Australia, Sweden, in 80 countries and on every continent

Amsterdam is not a country. The country is called The Netherlands. Amsterdam is the capital.

Well if we want to be difficult about this, Ireland really isn't a country either. It's a geopolitical region with two separate states on the same major island.

Pointing out that Amsterdam is a city and not a country isn't really "being difficult."

But it's off topic and not constructive.

It's a useful tool to determine how well-edited the source is.

Also apparently the plague of undiagnosed Lyme Brain Cloud has spread to Antarctica.

Where will it end? Somebody quick dispatch an MA/RP to Bellingshausen Station!

Terrible article. How do you test for it, and how do you treat it. Neither of those things is addressed at all. She doesn't even make a compelling case for "buy my book".

Well now I don't know who to believe.

I'd say believe the people and views supported by factual evidence, instead of appeals to emotion - I found the original article to be one long exercise in how to write things that would annoy a debate coach.

Or just remain skeptical, open-minded and curious for additional evidence towards either side.

If you don't have sufficient evidence, you don't have to believe either side.

It's not an issue to take sides on. Some people get infected with Lyme disease and need treatment. Some unhappy people go looking for a disease to believe they have and choose Lyme disease. My father had mysterious and very scary symptoms for several years running in the 1990s, and in like 2005 his doctor said, "You know, that could have been Lyme disease. Heck, it probably was," and that very quickly became a certainty in my Dad's mind. So when you hear someone say "Lyme disease" there's no way to know exactly what's up without hearing more.

I think it's okay to say "there are people with non-specific symptoms, and they really have these symptoms, but it's not proven exactly what's causing them". Because honestly that's where we're at now. I think it's likely that we'll figure get higher resolution into conditions like this and it'll become clear what the pathologies are.

What's dangerous is thinking you KNOW the answer (either in the affirmative or negative).

This whole article is an exercise in motivated reasoning. There's absolutely no way that the author would ever change their mind. They're far too entrenched in one camp. Even if we truly figure out the root cause, I doubt they'll ever give up their position.

If you just assert hard enough, eventually it becomes true! Who needs hard evidence anyway?

It's so frusterwting that there's a Lyme vaccine for dogs but no one will make one for humans.

They did make one and it got killed off by anti-vaccine campaigners.

https://www.cdc.gov/lyme/prev/vaccine.html

> A Lyme disease vaccine is no longer available. The vaccine manufacturer discontinued production in 2002, citing insufficient consumer demand.

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