
Lyme Is 'All in Your Head' – A Wake-Up Call to Mental Health Professionals - jrs235
https://www.madinamerica.com/2017/03/lyme-wake-up-call/
======
jakewins
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](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/](https://lymemadness.ca/)

------
givinguflac
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.

~~~
curuinor
'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)

------
aerosmile
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.

~~~
jbob2000
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.

~~~
aerosmile
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.

~~~
jbob2000
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!

~~~
aerosmile
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.

------
worldsayshi
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...](http://www.skepticalraptor.com/skepticalraptorblog.php/chronic-
lyme-disease-myth-reviewing-the-evidence/)

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.

------
curuinor
[https://en.wikipedia.org/wiki/Chronic_Lyme_disease#Controver...](https://en.wikipedia.org/wiki/Chronic_Lyme_disease#Controversy_and_politics)

~~~
keithyjohnson
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."

------
foxhop
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...](http://today.uconn.edu/2012/02/controlling-japanese-barberry-
helps-stop-spread-of-tick-borne-diseases/)

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.

~~~
gamache
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.

------
hashkb
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.

~~~
ep103
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.

~~~
ceejayoz
> 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.

~~~
worldsayshi
> with empirical tests to detect it and clinically proven treatments

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

~~~
ceejayoz
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.

~~~
ep103
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.

------
sosuke
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](http://legacy.wbur.org/2012/06/27/lyme-vaccine)

------
pcvarmint
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.

------
xxdarrenxx
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.

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

------
jhull
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.

~~~
ceejayoz
The effectiveness of placebo treatment is well documented.

~~~
jrs235
Which raises a good? question: "Should we treat people with placebos [without
their knowledge] if it might improve their lives?"

------
alaaf
> 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.

~~~
hydrogen18
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.

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

~~~
hashkb
But it's off topic and not constructive.

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

------
phkahler
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".

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draw_down
Well now I don't know who to believe.

~~~
packetized
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.

~~~
tumblen
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.

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

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

~~~
ceejayoz
[https://www.cdc.gov/lyme/prev/vaccine.html](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.

