
The Lyme Wars (2013) - gwern
http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter?currentPage=all
======
Kenji
I had Lyme disease and I started having symptoms (but no rash) roughly after
1-2 weeks after the tick bite (feeling unwell, shivering, joint pains, swollen
lymph nodes). I then took antibiotics for almost 2 weeks. I continued to have
severe joint pain for a couple of months. Now, more than a year later, I am
feeling well, but sometimes I still feel a very slight joint pain in those
affected joints near that tick bite. The most important thing is that you act
on it quickly and your chances are very good. The longer you wait - or haven't
noticed it - the more difficult it gets to treat.

"Kaleigh switched doctors and began a course of antibiotics that lasted eight
more months." that is not only dangerous but, sorry about the harsh word,
stupid. It is likely that opportunistic fungi will destroy your body if you
take antibiotics for that long, and there are even cases where this has led to
the death of the patient.

"It takes the tick at least thirty-six hours to transmit borrelia." Also, this
is wrong. Mine was in there for at most a day and I discovered it in the
evening while showering and then removed it. Why should there be a magical
barrier that stops bacteria from being transmitted during 36 hours?

~~~
Vomzor
I have Lyme disease. Tick bite when I was 10 years old, finally discovered I
have Lyme at age 26, after years of suffering and getting more symptoms year
after year. I'm now at the beginning of a long term antibiotics course. After
2 months of antibiotics, my foggy brain is starting to clear up again... for
one or two hours a day in the evening I can think & focus again. The rest of
the day I'm useless.

So it seems 2 months isn't enough to get rid of all the nasty bacteria, let
alone two weeks! Yes, long term antibiotics has it risks but I wouldn't call
it stupid when there's no other choice.

Furthermore, every 2 months the doctor switches the antibiotics, prescribes
refrigerated probiotics with trillions of living cells & does regular blood
checks (also for yeasts).

~~~
flatline
My mom was bitten by a tick in Colorado and given a 2 week course of
antibiotics when she started to feel ill. She got better then promptly got
worse as soon as they ran out. Over the next six months she progressively
worsened until she could only get out of bed for a couple hours a day. Finally
she found out about Lyme disease - many doctors do not believe that it even
occurs in Colorado so she didn't know what was wrong for the longest time. She
found a doctor out of state that insurance would cover who would treat her.
She was on heavy doses of oral antibiotics for four years and has never had a
relapse, some 20 years later.

Good luck on your treatment.

~~~
mrfusion
Did they test her for Lyme disease? Did she have the active anti-bodies?

~~~
flatline
Just saw this reply, a couple weeks late, but:

Yes, and no, at least not initially. I believe they repeated the test and it
came back positive at a later date. So it seems likely that she got
_something_ from the tick, probably in part Lyme. The Lyme test is reputed to
have a high false negative rate, not sure to what extent this is true.

------
Alex3917
The unfortunate reality is that both the CDC and the patient advocacy groups
are lying their asses off. On the CDC side, all the recommendations are based
around lyme when, as this article points out, there are dozens of tickborne
infections including probably many that haven't even been discovered yet. So
the 'official' clinical guidelines around treating tickborne illnesses make no
sense. And in general many of the recommendations just seem to be deeply
epistemologically flawed.

Whereas on the patient advocacy side, if you look at their (ILADS) reports,
many of the footnotes go to random people's blogs, and if you follow the
footnote trail long enough it just ends up where many of their recommendations
basically just originate with random people making up shit.

~~~
jobu
It wasn't until after having a kid and getting very conflicting advice from
different doctors for the same issues that I realized doctors are mostly
making educated guesses on treatment.

Fortunately, there's a significant placebo effect for nearly any treatment
from a doctor, so even when doctors make guesses it often ends up helping.

~~~
Alex3917
Not sure how much placebo effect is going to help with a bacterial infection.

Especially with this new disease that was just discovered in New York State
last year, you get it within 15 minutes (unlike Lyme which allegedly takes 24
hours) and it has a 30% chance of killing you. The members of my local
mycology group are getting absolutely dropped by these things... One of our
members almost died a couple months ago after having the white blood cell
count of an end stage AIDS patient. It's almost suicidal to go into the woods
without pants stuffed into your socks, a long sleeve shirt tucked into your
pants, and all your clothes treated with permethrin. I've even started wearing
boxer briefs just to keep them out of there at least.

~~~
cylinder
What disease is this?

~~~
Alex3917
Powassan virus:

[https://www.google.com/webhp?sourceid=chrome-
instant&ion=1&e...](https://www.google.com/webhp?sourceid=chrome-
instant&ion=1&espv=2&ie=UTF-8#q=powassan%20virus%20new%20york)

------
ckinnan
Lyme is now the number one infectious disease in New England. Until medical
science finds an effective cure, the best solution is to hunt deer populations
back down to historical and sustainable levels, around 10 or 15 deer per
square mile. (current populations approach 60 deer per square mile in some
areas). While mice are the most important reservoir for Lyme (and pass it to
humans via tick nymphs), the adult black legged tick still needs deer to
complete its life cycle.

Added benefits: deer overpopulation is also a huge problem for forest
management (they eat all the hardwood saplings) and deer-auto collisions kill
a couple hundred people a year and cause over $4 billion a year in insurance
losses.

~~~
gkop
This also accurately describes the deer overpopulation in Pennsylvania, where
there is also rampant lyme disease. In Pennsylvania, the deer hunters really
enjoy the status quo, because of the good odds they can bag a buck every year.
And because the hunters have some political influence, proposals to reduce the
deer population go nowhere. I'm not sure if the political landscape is similar
in New England.

~~~
fasteo
Looking at this from the outside, it seems to me that deer hunters are more
likely to get lyme disease and so, they should favor deer population control.

~~~
ep103
If you're just going out into the woods for a day, its relatively easy to stay
safe. You wear certain types of clothes, tuck them into each other a certain
way, spray yourself with tick repellent, come home, throw them immediately
into the wash, and then shower and check your body.

Ticks are much more difficult for children (who have to be taught the above),
definitely people with outdoor pets, people who didn't expect to be in the
woods (gardening, picnics, shortcut on the walk home, etc), and people not
returning for the night (ever try checking yourself for ticks by firelight?
even then your laundry is nearby, and they might crawl out. etc)

~~~
ckinnan
Specifically, when going into tick areas, no open toed shoes, no shorts, and
wear long sleeves. Tuck your pants legs into your socks. Most ticks climb up
from your feet. Another tip is to treat your outdoor shoes with permethrin on
the first of each month in May, June, July, and August.

------
amluto
I'm surprised that the article doesn't mention LYMERix, the FDA-licensed
vaccine that seems to be a casualty of anti-vaccine hysteria and a somewhat
overzealous legal system. There seems to be a tiny suggestion that the vaccine
might cause some issues, but all the studies seem to show that this isn't a
problem.

Also, vaccinating dogs against Lyme disease is standard practice, and it
doesn't seem to hurt the dogs.

Here are some references:

[http://cid.oxfordjournals.org/content/52/suppl_3/s253.long](http://cid.oxfordjournals.org/content/52/suppl_3/s253.long)

[http://cid.oxfordjournals.org/content/52/suppl_3/s253.long](http://cid.oxfordjournals.org/content/52/suppl_3/s253.long)

~~~
mrfusion
Can humans use the dog vaccine? Perhaps a black market might develop?

------
mrfusion
It's funny, there's actually a vaccine [1]. It's amazing we're not getting it
out there:

> In 1998 SmithKline Beecham (now GlaxoSmithKline) developed a vaccine that
> was about 80 percent effective for at least a year after three doses.

[1] [http://www.nytimes.com/2013/09/19/opinion/bring-back-the-
lym...](http://www.nytimes.com/2013/09/19/opinion/bring-back-the-lyme-
vaccine.html)

~~~
ckinnan
Unlike most vaccines, there's no herd immunity benefit for humans because the
transmission vector are ticks. So to make any headway we have to go after the
ticks, and their hosts, the deer and the deer mouse.

~~~
mrfusion
Don't the ticks get it from humans though?

~~~
maxerickson
I guess they can, but the wild animals are the primary disease reservoir,
mostly just because there aren't all that many ticks feeding on humans and
making it back into the wild.

It also matters what species egg laying females feed on. The first few
paragraphs of this lay it out:

[http://wwwnc.cdc.gov/eid/article/16/3/09-0911_article](http://wwwnc.cdc.gov/eid/article/16/3/09-0911_article)

------
odonnellryan
I had Lyme disease (tested positive, treated.) I've felt "like shit" for
probably at least the last year.

~~~
fasteo
If you haven´t, I suggest Longecity forums [1]. There are a few members that
have/are battling lyme and it is full of good advice.

[1] [http://www.longecity.org/forum](http://www.longecity.org/forum)

------
jonweber
My dad got Lyme on the Appalachian Trail five years ago, and still has symptom
flare-ups regularly. Lyme has a habit of converting anybody affected by it
into an activist, which probably stems from the controversy over diagnosis and
treatment of things like chronic Lyme.

Earlier this year I founded TickChek.com, a startup that offers PCR-based
laboratory tick testing that can determine whether or not a tick that bit you
carries Borrelia (the Lyme disease bacteria) or other tick borne disease
vectors with 99.99% accuracy. We've tested hundreds of ticks so far, and most
of our customers use our lab results to help decide whether antibiotics or
full blood testing is necessary.

Most people aren't aware of tick testing as an option for determining their
risk of contracting Lyme, and we're going to be working hard to spread
awareness before next year' tick season.

~~~
mrfusion
Cool service! Is it possible to have insurance pay for this? Is it hard to
send ticks through the mail?

~~~
jonweber
Most insurance companies don't cover tick testing, unfortunately. We've never
had any problems sending ticks through the mail though. People usually send
'em in sandwich bags inside normal envelopes, alive or dead.

------
Pyrodogg
I was diagnosed with Lyme disease when i was in elementary school, ~5th grade.
No rash was noticed. It wasn't until days later than my knees had swollen so
bad that I couldn't walk without significant pain that my teachers and parents
actually did anything.

Antibiotics and god awful syringes to extract the fluid in my knees. Even
though I've been without pain in my knees since, it's left me with a life long
hatred for high impact things like running.

I'm now 27. I'd generally say that I feel just fine. But on the other hand,
"foggy brained" is also something that i'm pretty sure my Mother, and close
friends would pin me as being.

~~~
cjcole
Sounds very much like my symptoms (intense knee pain/swelling and no rash),
except that you don't mention low-grade fever and jaw pain (which I had). I
was eventually on crutches and had an enormous amount of fluid (orange)
removed from my knees. Cortisone helped a great deal.

For whatever reason they tested me for everything under the sun (rheumatoid
arthritis, gout (!), etc) before testing for Lyme. I wish I knew then what I
know now.

Know the symptoms, insist on the test.

------
cpncrunch
While undoubtedly there are some people who have undiagnosed lyme, I suspect
there are a lot of people who actually have CFS instead. Reading these kind of
news stories it seems there are a lot of lyme "patients" who never had the
bulls-eye rash, who keep going to doctors until they are given a diagnosis (or
they buy a dubious test, such as igenix), then they're cured by a dubious
supplement/diet treatment (which is highly unlikely to cure a bacterial
infection).

It also sounds like long-term bacterial therapy isn't any use for lyme if you
start it years after infection.

------
goodcanadian
I remember another article, some time back, where it compared the standard
treatment for humans with a tick bite: wait to see if anything develops versus
the standard treatment for dogs with a tick bite: immediate prophylactic
antibiotics. The dogs had a much lower rate of chronic problems.

------
mrfusion
Does anyone know why we don't develop an immunity to lyme disease after being
infected once?

~~~
cjcole
I was diagnosed with and treated for Lyme a few years ago.

At the time, my physician mentioned that a previous infection would provide "a
limited immunity" (exact quote).

Since then, I've had two bulls-eyes but no symptoms (oblig anecdata).

It appears that you develop an immunity only to particular strains of the bug:

[http://iai.asm.org/content/early/2014/01/07/IAI.01451-13](http://iai.asm.org/content/early/2014/01/07/IAI.01451-13)

