
Maybe It’s Lyme - elliekelly
https://www.thecut.com/2019/07/what-happens-when-lyme-disease-becomes-an-identity.html
======
amiantos
It’s interesting to see how many famous people end up with “chronic Lyme”. It
was John Lurie who introduced me to chronic Lyme, I think he’s “cured” now but
I haven’t seen a lot of details as to how or why—while he wouldn’t stop
talking about it when it was going on. Lurie told me once he had “ozone
therapy” (literally injecting air into your veins) because Flea (from RHCP)
had good luck with it for his “chronic fatigue syndrome”. It’s quackery all
the way down, semi-famous people seem to fall for it, I’m sure Michael Shermer
can explain why.

Also I find it weird how many Lyme stories are popping up on HN lately. Not a
lot of sham science on here otherwise. Seems fishy.

~~~
power
30000 Lyme cases a year are reported by health services to the CDC so
eventually some celebs are going to catch it, and since they make good news
you'll hear about it. On "chronic Lyme", it's been rebranded as post treatment
Lyme disorder (PTLDS), it's acknowledged by the CDC [0] and they also
acknowledge that some experts hypothesize it may be the result of persistent
infection, others an autoimmune disorder. One John Hopkins study [1] found the
typical symptoms of PTLDS do persist for some after treatment for Lyme and
another[2] found a set of symptoms allowing them to reliabily identify PTLDS.
Any disease that lasts a long time and doesn't have a set treatment is going
to attract quackery and plenty people will fall for it, but that doesn't mean
there's no disorder there. The fact the symptoms can come and go makes it that
much easier to associate their most recent treatment with a cure. [0]
[https://www.cdc.gov/lyme/postlds/index.html](https://www.cdc.gov/lyme/postlds/index.html)
[1] [https://www.hopkinsmedicine.org/news/newsroom/news-
releases/...](https://www.hopkinsmedicine.org/news/newsroom/news-
releases/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-
treatment-for-lyme-disease) [2] Mentioned here
[https://www.hopkinslyme.org/lyme-disease/treatment-and-
progn...](https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-
lyme-disease/)

~~~
ceejayoz
PTLDS is not entirely a rebrand of "chronic Lyme". It's specific to "people
who had Lyme and still have issues". "Chronic Lyme" frequently involves people
with no verifiable (or even likely) Lyme exposure.

[https://www.niaid.nih.gov/diseases-conditions/chronic-
lyme-d...](https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease)

> In some patients, symptoms, such as fatigue, pain and joint and muscle
> aches, persist even after treatment, a condition termed “Post Treatment Lyme
> Disease Syndrome (PTLDS)”.

> The term “chronic Lyme disease” (CLD) has been used to describe people with
> different illnesses. While the term is sometimes used to describe illness in
> patients with Lyme disease, it has also been used to describe symptoms in
> people who have no clinical or diagnostic evidence of a current or past
> infection with B. burgdorferi . Because of the confusion in how the term CLD
> is employed, and the lack of a clearly defined clinical definition, many
> experts in this field do not support its use.

------
nosefrog
I'm sure there are some overzealous folks who are misdiagnosing themselves
with chronic Lyme, but I think the author's attitude is a bit too dismissive.
I have a close family friend who became paranoid after getting Lyme, and I
have another friend who's sister committed suicide because of Lyme symptoms
that didn't go away. If the mainstream medical establishment is ignoring what
seems to be a real issue, then they're partially responsible for the quackery
that's come about in the vacuum they've created.

~~~
bitexploder
It was a long article, but the point was there is no way to actually diagnose
it so it is not possible for the medical establishment to treat it. And Lyme
is “everything” including run of the mill depression. Culture impacts how
psychiatric illness manifests. It’s quite possible most or almost all of these
people have a mental illness and they find support and acceptance in the Lyme
community. Not saying it isn’t real, but it could have a mundane explanation.

~~~
davidjnelson
> there is no way to actually diagnose it

Erythma Chronica Migrans rash and western blot blood test...

~~~
bitexploder
Lyme Disease vs Chronic Lyme. Or Lyme Disease vs Lyme. The article and what I
was talking about are when you no longer have Lyme Disease, or maybe you never
had it, but you think you have “chronic Lyme”

------
bsaul
It would be interesting to look back in history on how many real diseases used
to be categorized as psychological by doctors at the time. Or how many proved
to be in fact a single name given to many different diseases for lack of
better understanding.

But it would also be interesting to find out how many things we considered to
be diseases were actually psychological.

~~~
0xcde4c3db
Probably the most striking case of the former is anti-NMDA-receptor
encephalitis, which causes schizophenia-like symptoms in its early stages
(delusions, hallucinations, disorganized thinking,
depersonalization/derealization) [1]. It doesn't even seem to be especially
rare, but it wasn't identified until 2007.

The latter is tricky because modern psychiatry doesn't really give us the
notion of confirming that a condition is psychogenic. Almost all modern
psychiatric diagnoses are diagnoses of exclusion (more or less) and do not
carry any particular assertions about etiology. We can be reasonably certain
that cases of psychogenic disorders do exist, but I don't think they tend to
explain any preexisting diagnosis because the signs and symptoms vary so much.

[1]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983958/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983958/)

------
mgamache
People look for an answer and "once found, the disease could explain
everything. It engulfed any alternative."

That's the key to much of alternative medicine. Often they start with a
conclusion and find supporting evidence. It's like a horoscope we project
ourselves into it.

~~~
moby_click
As the article pointed out, the hallmark here is the "Herxheimer reaction" or
"detoxing" elsewhere. I'm not making a statement on endotoxin release one way
or another, but one has to be very careful to apply reasoning that explains
bad reactions to treatmens.

------
dekhn
What I find so bizarre is that I spend my youth in Connecticut (not far from
Lyme itself) walking with bare legs/feet through the woods for long periods of
time and never found any ticks on me or showed any Lyme symptoms, while people
I went with would end up covered in ticks after just ten minutes in the grass.

------
odyssey7
Reading the article gives an impression of the people who seek out and provide
bunk medicine.

It’s also a picture of how actual medicine is incomplete and has failed a lot
of people, leaving many suffering and looking high and low for whatever might
work.

~~~
elliekelly
It was really interesting to me the way the one doctor described her
difficulty even discussing bunk science it with her "chronic Lyme" patients:

> Chronic Lyme becomes an identity, being anti-vax becomes an identity, and
> once a belief is incorporated into someone’s identity, it’s very hard to
> counter.

I think it echos a lot of issues we're dealing with today. Once a person
"identifies" as something - political party, illness, anti-vaxx, etc. - it's
like the brain becomes impervious to any information that might challenge
their identity.

