
Time to Get Serious about Tick-Borne Diseases - brownbat
https://blogs.scientificamerican.com/observations/its-time-to-get-serious-about-tick-borne-diseases/
======
jamisteven
Being someone who has this disease, I can say its much worse than even this
article depicts. I was self-diagnosed after seeing over 10 doctors. First was
told ahh its Lupus! Then it was certainly some kind of STD, then Rheumatoid
Arthritis, then Gout, then reactive arthritis, it wasnt until I looked at my
spreadsheet I had kept to look for commonalities that I noticed every one of
them said they were "75% sure it wasnt Lymes". I immediately went to
anylabtestnow and had a few tests done for common forms of borellia infection
and took the results to my rheumatologist. You would think thats the end of it
but no, after months of antibiotics I was still not well and still couldnt
walk correctly, I ended up at a naturopath in Seattle. All said and done I
lost 30lbs, couldnt get out of bed, pain everywhere, symptoms of amnesia,
forgetting everything, scoriosis on my eyelids, and all kinds of other really
terrible side affects that I wont get into here.

~~~
e40
Sounds terrible. I hope you are better now.

I read here in a comment here about a person that went through years of
antibiotics, to no avail. What finally helped? A 2 week fast. He said he found
the idea on some forum and decided to give it a go, since he had nothing to
lose at that point.

~~~
simonsaidit
[http://www.smashcompany.com/philosophy/how-i-recovered-
from-...](http://www.smashcompany.com/philosophy/how-i-recovered-from-lyme-
disease)

~~~
pagutierrezn
Fasting to cure the Lyme disease sounds very strange. Almost as the infamous
banana diet to cure celiac disease.

------
jcoby
Lyme disease is no joke. My neighbor's son found out he had Lyme after being
mis-diagnosed with (I think) MS. He was losing motor function, one eye started
to go blind, and he was chronically tired. He made a full recovery after being
diagnosed but that was several years taken from a person in their early 20s.

I believe I had some sort of tick-borne bacterial illness as well. I felt a
scratch on my ankle and found a small tick. I didn't think anything about it
and threw it in the toilet. A few days later I started losing concentration,
almost feeling out of body. I'd find myself not remembering what I was doing
or how I got there. I couldn't read. I would stop mid conversation unable to
remember what I was saying. After a week I went to the doctor and Lyme came
back negative. Another week passed and he gave me an antibiotic and it cleared
up in a few days. It may have been psychosomatic but I have never experienced
anything like it before or since. The mark on my ankle has taken almost three
years to heal.

~~~
jaypeg25
My girlfriend was recently possibly diagnosed with MS. I say possibly because
the doctor isn't confident - he put it at about 75% likely it's MS - but has
no other answers to her symptoms which include numbness that started in her
feet and eventually went up to her thighs that lasted for ~2 weeks, as well
Barber's Chair Syndrome, and Retinal Vasculitis.

All 3 symptoms have since faded away, and the MRI's weren't conclusive enough
to say it was MS, so the doctor is at a loss and working to get her set up
with more tests.

What's interesting is she found a tick on her about a year ago, but the Lyme
results came back negative. It may be MS but the doctor seems to have enough
doubt that I've often wondered if it might be Lyme or something else.

~~~
Vomzor
There is currently no reliable Lyme test. The most commonly used test has an
accuracy and sensitivity of 50 %. Worthless. A tick bite + weird symptoms =
very high change it's caused by a tickborne disease.

[https://globallymealliance.org/about-
lyme/diagnosis/testing/](https://globallymealliance.org/about-
lyme/diagnosis/testing/)

~~~
phaedrus441
The CDC says, "When performed and interpreted in accordance with current
guidelines, 2-tiered serologic analysis has a sensitivity of ≈70%–100% and a
specificity >95% for disseminated Lyme disease."
[[https://wwwnc.cdc.gov/eid/syn/en/article/22/7/15-1694.htm](https://wwwnc.cdc.gov/eid/syn/en/article/22/7/15-1694.htm)]

------
lymeeducator
The testing and treatment of tick borne pathogens is a fine line between
politics, science and empathy is because many people have been treated poorly
by the medical industry. The majority of the symptoms are ignored by
physicians or misdiagnosed. In many cases, co-infections or existing immuno-
suppressive conditions are ignored by physicians. That's happened to a number
of people I know.

It is very common for most practitioners to be ignorant of: HLA DR gene types
(can accumulate metals, mycotoxins, lyme toxins, etc), the nature of the Lyme
bacteria strains: spirochtte (reproductive, doxycycline susceptible), round
bound starvation form (resistant to most antiobiotics), and the nature of
biofilm colonies (antibiotic resistant) that exist in nature and our bodies.
Furthermore, most physicians do not know what labs and tests to apply to a
patient: Igenex and Galaxy labs for Lyme, Bartonella, Babesia, etc testing;
c3a, c4a, tgf-b1, mmp-9, inflammation markers.

In short, each human phenotype, genetic expression, and immune context are all
highly unique ... which means that every case is different. Inflammation from
our immune response is the primary driver of symptoms and is very, very often
mis-diagnosed as something else like MS or dementia (happened to a number of
people I know). We need a lot more data to finally help educate physicians and
bring the vast majority them out of the stone age. We need to educate everyone
on complex systems, nutrition, and biology instead of just authority.

~~~
sooheon
Just reading up about this issue. Root cause for the controversy seems to be
difficulty of diagnosis. What prevents development of a "smoking gun" detector
for lyme, finding the actual lyme causing bacteria _in vivo_ in humans with
symptoms?

~~~
eigenloss
There isn't a "smoking gun" detector for Lyme in much the same way that there
isn't a "smoking gun" detector for cancer. Diagnosing Lyme with blood tests is
only one tiny piece of the controversy around Lyme.

~~~
sooheon
For cancer, you can do a biopsy and know for sure. The equivalent would seem
to be presence of the bacterial infection in the body.

~~~
epmaybe
Right, but if you could do it for Lyme couldn't you do it for every bacteria?
Blood testing would be our best bet, and we already do that with Lyme antibody
testing and Lyme DNA testing. The main problem is that they are very expensive
tests (usually a couple hundred dollars, and not always covered by insurance)
and thus you need enough clinical suspicion to make the call to get something
like that. How do you further increase your suspicion when you have a disease
that mimics a lot of other diseases, without breaking the bank?

~~~
sooheon
Antibody testing seems to have wiggle room, which causes people to assume they
have Lyme whatever the result. If they believe chronic Lyme is ruining their
lives, and long term antibiotics will help, why not take a conclusive test
that actually finds the bacteria and know for sure? What's missing from all
these anecdotes is that they go from not being sure of the diagnosis, to
trying a fringe treatment against the recommendation of multiple medical
bodies.

~~~
eigenloss
You say all of these things, as a probably-not-100-year-old-human, about a
genus of highly advanced shapeshifting spirochete bacteria that have spent the
past (perhaps) 500 million years living in the bloodstreams and bodily tissues
-- and evading the immune systems -- of billions of mammals and reptiles (and
everything between) across the globe.

We only found out about these spirochetes in 1981. That's 38 years ago. You're
probably older than that.

Yet you have cited precisely zero sources, arguing by shooting holes in straw
men. For the love of <God>, and all that is holy, Sooheon: please base your
opinions on evidence.

~~~
sooheon
Not sure what rubbed you the wrong way, these are just questions I have as I
read about this topic for the first time, trying to understand the controversy
here. I'm not going to have reams of citations for you. If you have citations
to throw at me feel free, but from what I can see, reliable medical bodies
consider this to be a misdiagnosis at best.

------
NikolaNovak
Hmmm; Is the Scientific American's "Observations" section equivalent to
newspapers' "Opinions" or "Editorial"?

Because while I agree with overall message ("Let's get serious about battling
ticks and diseases they spread"), there is a strange mix of scientific/data-
based; political/opinion-based; and just plain emotional imploring. It brings
up the _highly_ controversial Chronic Lyme topic right front and centre, but
then attempts to steer itself ambiguously away from it (essentially, "Whatever
the case, we need to fight it"). Can the author really be unaware of the
immediate guard that will go up on every side of that thorny issue?

~~~
dumbneurologist
I'm a neurologist, which means I specialize in diseases of the brain, spinal
cord, and nerves.

The clinical entity of chronic lyme disease which is undiagnosable by
conventional medicine and require months and months of antibiotics is
pseudoscience. There is a large industry built to pedal treatments to
purported sufferers. I don't want to be disrespectful of the people who report
being helped by these treatments, but this is exactly the same situation as
vaccinations causing autism: people being convinced by "obvious facts" that
are ultimately supported by anecdotes but not science.

The medical community can be wrong, for sure (h. pylori is a great example),
but we notice treatments that help our patients, even when unconventional (the
FDA approval of cannabis to treat epilepsy is the most recent example).

This will eventually reach the same conclusion as the vaccination debate;
hopefully with a lower price tag of dollars and lives.

~~~
GiorgioG
I guess those of us who were bitten by ticks and have been sick ever since are
just imagining our illnesses? Why is it that the medical establishment is fine
with TB requiring 6 months of antibiotics, but because you can't believe that
tick-borne diseases may take months to treat?

It's time for the medical field to actually consider the possibility that
prolonged tick-borne illnesses might be real. Is months of antibiotics the
best treatment? I don't know, but it's the only treatment option I've been
given. It sure beats an army of doctors (2 PCPs, 2 neurologists,
rheumatologist, immunologist, and more) trying to convince me there's
absolutely nothing wrong with me. Tell my wife, kids and friends that
everything's fine - I'm exhausted from the time I get up to the time I go to
bed, brain fog, working memory issues, etc. The only test that came back
positive was rocky mountain spotted fever (4 months ago) and I've been feeling
ill for almost 3 years. But you're right chronic tick-borne illnesses don't
exist.

For the record, I would likely believe it was quackery too if I wasn't living
proof that it's real.

~~~
appleflaxen
> But you're right chronic tick-borne illnesses don't exist.

Why the snarky sarcasm? My comment is hidden now, but I thought I said they
_do_ exist, and that the pseudoscience is in the chronic, longterm antibiotic
treatments.

But your reaction is exactly what parents of kids with autism said: I saw my
child get autism after a vaccination. I am it. It happened to me.

Tick diseases do exist, and they have great (conventional) treatments. It can
be _very_ difficult to get the right diagnosis, and for your doctor to make
the diagnosis.

There are a lot of people out there selling very expensive and completely
inappropriate treatments, and it has created endless confusion on the part of
the patients who are suffering. It's unconscionable, and when the
patients/victims are so convinced that they campaign for it, it's downright
tragic.

Just consider how exhalted Andrew Wakefield was by his patients in the day.

Regardless: I'm sincerely happy that you're getting much better.

~~~
GiorgioG
[https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-
sur...](https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-survive-
after-antibiotic-treatment-months-after-infection)

~~~
dumbneurologist
Your link makes my point perfectly: doctors are open-minded, and have
conducted rigorous investigations using meaningful clinical endpoints, and
cannot substantiate the anecdotal reports of improvement in spite of a very
diligent search. It states:

    
    
      Posttreatment LD remains a poorly understood syndrome, 
      occurring in an estimated 10% to 20% of humans treated 
      under current IDSA guidelines.30 Multiple randomized, 
      placebo-controlled studies that evaluated sustained 
      antimicrobial therapy concluded that there is no benefit 
      in alleviating patients' symptoms and indicated that long-
      term antibiotic therapy may even be detrimental to 
      patients because of potential associated complications 
      (ie, catheter infection and/or clostridial colitis).31, 
      32, 33
    

Where the references are:

Berende, A., ter Hofstede, H.J., Vos, F.J., van Middendorp, H., Vogelaar,
M.L., Tromp, M., van den Hoogen, F.H., Donders, A.R., Evers, A.W., and
Kullberg, B.J. Randomized trial of longer-term therapy for symptoms attributed
to Lyme disease. N Engl J Med. 2016; 374: 1209–1220

Kaplan, R.F., Trevino, R.P., Johnson, G.M., Levy, L., Dornbush, R., Hu, L.T.,
Evans, J., Weinstein, A., Schmid, C.H., and Klempner, M.S. Cognitive function
in post-treatment Lyme disease: do additional antibiotics help?. Neurology.
2003; 60: 1916–1922

Klempner, M.S., Hu, L.T., Evans, J., Schmid, C.H., Johnson, G.M., Trevino,
R.P., Norton, D., Levy, L., Wall, D., McCall, J., Kosinski, M., and Weinstein,
A. Two controlled trials of antibiotic treatment in patients with persistent
symptoms and a history of Lyme disease. N Engl J Med. 2001; 345: 85–92

~~~
GiorgioG
I tracked down those studies and the treatments tested were from 30 days to 12
weeks - hardly what I would consider 'long term therapy' that's currently
advocated/practiced by LLMDs.

I don't have any definitive answers. All I can tell you is, if you felt as
lousy as I feel, you'd be willing to try it given the lack of any meaningful
treatment options from the current mainstream medicine that has managed to
extract a shitload of my money in exchange for mostly blank stares & shoulder
shrugs (or my favorite, passing me onto another specialty, resulting in
another 2 month wait.)

~~~
dumbneurologist
> the treatments tested were from 30 days to 12 weeks - hardly what I would
> consider 'long term therapy' that's currently advocated/practiced by LLMDs

ahh! there is something here. I't subtle but I think it's a really important
process you've described:

Conventional medical experts took the anecdotes and lyme theories, and decided
to test "long term" therapy that was being advocated by less-conventional but
still well-meaning providers at the time. These were the results: they showed
there was no benefit.

So conventional thinking moved on, and the now-fringe thinkers simply moved
the goalposts. Any scientist is going to be open-minded about the possibility
of something being effective, even if they don't understand it. But at this
point there are far better places (meaning "likely to show efficacy") to
invest research resources.

And the question we're all asking ourselves is: if the alt-medicine community
is so convinced that there is a benefit, why on earth won't they perform a
randomized, placebo-controlled, clinical trial. We already did several, and
published them. If the alt-lyme community still wants to continue making
claims and expect to be listened to, they are going to need evidence.

That seems like it should be uncontroversial to me, but here we are.

------
ben7799
Prevention is worth a lot here. I've been aware of Lyme for 30 years now
probably? (I have lived most of my life not that far from Lyme, CT where it
was first noticed.) Because I've been aware of it so long it would get brought
up to the doctor immediately if something happened. It would also be very
unlikely I would get bit and not notice.

Taking the usual recommended precautions and checking yourself carefully goes
a really long way.

Be careful around tall grass. Don't hang around in areas that make it easy for
a tick to get on you. Wear clothes that reduce risk.

I've been a very active hiker/mountain biker for many years now. I've pulled a
few ticks (<10) off me but I have always found them before they bit me.

Biggest factor I've noticed in the people I know who have gotten Lyme is dog
ownership. I would be really interested if someone did a study. It seems Dogs
in the house raise the risk significantly. Dogs on a walk behave in the most
risky way possible hanging out in tall grass and going everywhere (they're
dogs, can't blame them) and they have a nice furry coat that is easy to grab
onto for the ticks. Then you need to check the dog and remove the ticks,
bringing yourself into contact with the ticks. Or you miss them and now the
ticks are crawling around in your house.

Dog owners also seem to wear more casual clothes going for a walk with the
dog. The dog drags them into areas they might not have gone on their own. The
casual clothes provide more surface to grab onto vs dedicated clothes an
outdoor enthusiast is wearing. (Most feel compelled to wear appropriate
clothes and at that point you can adjust for tick prevention)

Unfortunately I've known multiple dog owners who have gotten Lyme multiple
times.

Check kids really carefully, they're too young to know any better.

------
UI_at_80x24
Several years ago I went on a hike/hammock camping trip. This was in an `old-
growth` state forest and had practically no underbrush. The ground around the
campfire area was bare dirt, and I sat/reclined on a ground-sheet and a 'sit-
pad'. (two layers between me & the ground).

2-days into the camping I started to feel like I was having a reaction to a
bug bite, assumed it was mosquitoes and ignored it.

I got home after 4-days, went to climb in the shower and my wife pointed out
that I had several ticks attached to my back. So I grabbed my knife, pulled
them off, and watched the area for a few days. (I had my wife circle the red-
welts with a sharpie to make sure it didn't spread.)

I was ofcourse concerned about Lyme. Turns out nothing happened, and the
redness went down. But I took precautions against getting made a meal of, and
I still failed. It was a sobering incident, and I know I was lucky.

~~~
blub
Did you use any insect repellent?

~~~
UI_at_80x24
Yes, (basic DEET spray, and 'Muskoil')but this was before I learned about
Permethrin. I now use that religiously.

------
forgotmypw3
Disclaimer: I am not a doctor.

If you live in a lyme-tick area, you should have antibiotics on hand at all
times.

If you find a tick that's already been on you long enough to cause a red
irritation spot, the clock is ticking.

Any time spent on finding a doctor to see, waiting for test results, seeing if
symptoms develop, etc. is wasted time.

The sooner you make your body an unfriendly environment to the bacteria, the
less time they have to grow and spread.

This means not only antibiotics, but also not eating anything calorie dense,
eating fresh garlic and other natural antibacterials, and getting a lot of
sleep, when your immune system works best. If you are a weed smoker and it
makes you crave food, it may help to take a tolerance break. Coffee will not
help you in this situation.

This is a protocol I've learned about from several people for whom antibiotics
do not work. I think there's a book about it.

Doctors have told me that a 3-day course is enough to prevent a system-wide
infection if you catch it early. Once an infection settles in, a longer course
is needed, typically 14 days, which will do major damage to your biome.

~~~
uniformlyrandom
> If you live in a lyme-tick area

So, continental US, excluding maybe Nevada and New Mexico (because desert).

> you should have antibiotics on hand at all times.

So, here is a problem: in US, antibiotics are prescription-only. And no doctor
would prescribe antibiotics preventively. They will prescribe antibiotics
after a tick bite, but you need an office visit (or online office visit). The
only way to get antibiotics preventively is to stash some after a tick bite,
or simulate symptoms over a video call.

TL/DR: if you are in US, you're fucked.

~~~
tntniceman
The desert certainly doesn't stop the suckers, speaking as a New Mexico
resident. Ticks abound, Lyme equally so.

~~~
0xffff2
Really? The CDC [0] shows a total of 4 cases of Lyme in NM from 2012-2017.
Looking at that map, it appears to me that the desert does seem to stop the
suckers.

[0]
[https://www.cdc.gov/lyme/stats/maps.html](https://www.cdc.gov/lyme/stats/maps.html)

~~~
evandev
Not to mention:

> Each dot represents one case of Lyme disease and is placed randomly in the
> patient’s county of residence. The presence of a dot in a state does not
> necessarily mean that Lyme disease was acquired in that state. People travel
> between states, and the place of residence is sometimes different from the
> place where the patient became infected.

------
jph
Lyme has a great young hacker: there's a kid who got Lyme, and she learned how
to build an app, connect doctors, start a foundation, and create a self-
reporting network of hikers, campers, and outdoors people. Very inspiring!

[https://ticktracker.com/](https://ticktracker.com/)

[https://livlymefoundation.org/](https://livlymefoundation.org/)

~~~
cascom
While the goal seems laudable not sure I follow the purpose of the app. Is it
to track ticks in areas where people don’t expect them? Where I grew up you’d
be reporting them every other day

~~~
afterburner
I imagine so, since the affected areas are expanding.

------
wes-k
I live in TN which fortunately doesn’t have Lyme carrying ticks but other bad
things like Rocky Mountain spotted fever and alpha gal (allergy to meat thanks
to the lone star tick).

There are several precautions we take every time we go camping or hiking
during tick season:

1\. Spray permethrin on shoes and ankles.

2\. Tuck pants into socks.

3\. Leg tick checks during + full body check when we get home and for next two
days.

4\. Toss all clothes in the drier. The heat kills them. Do not wash first!

5\. Shower with T/gel. Still not fully tested but we heard this will kill
them!

So far I’ve had a few cases of an attached tick but nothing longer than half a
day of exposure. Bleh!!

~~~
hammock
Do you find permethrin to be more effective than DEET? Or do you do it because
it's safer.

~~~
noonespecial
Permethrin is vastly more effective than deet. It lasts for weeks, even across
washes and kills basically any insect that touches the sprayed areas. Its so
harmless to mammals(1) that ranchers spray it directly on cattle.

It is extremely toxic to marine life and indiscriminately kills insects
including beneficial pollinating insects. Use with care.

 _(1) With some important exceptions, thanks to rileyphone for the reminder._

~~~
rileyphone
Please note that permethrin is still toxic to cats.

~~~
noonespecial
Indeed, so much so that if you have both a cat and a dog, you should not use
the standard topical flea treatment on your dog (which contains permethrin) as
enough may transfer to your cat to cause serious issues.

------
cascom
Coming from a place with an endemic Lyme disease problem, I whole heartedly
agree with the thrust of the article. I’d add however that in addition to
funding and research into tick-borne diseases, there needs to be significant
research and funding directed at reducing tick populations in an
environmentally safe manner (current methods mostly involve spraying your lawn
with chemicals, or applying permethrin to rodents and deer in some ridiculous
fashion)

~~~
pcmaffey
Agreed. I vote to reintroduce wolves.

~~~
slowmovintarget
Or some other means of controlling deer populations, like, say, hunting.

------
projektfu
Lyme is essentially the poster child for an emerging disease related to
climate change and human activity. It's an old organism in an ancient tick
that had a happy lifecycle of tick-mouse-tick-mouse-tick-deer-tick. Humans
took the forest and the predators out of the picture and now the ticks and the
deer proliferate at hugely increased rates, and now we're part of the
lifecycle of this tick and the Borrelia organism.

~~~
lonelappde
Are deer much more dense than in the past?

And as bad as Lyme is, if we kept predators like wolves in the civilization-
adjacent forests, would it be better or worse --- today's Lyme rate vs the
counterfactual wolf attack rate if they stayed?

~~~
projektfu
I think it is hard to know before the appearance of people who might count,
but the loss of the forest means that the deer are browsing suburban areas
more and the ticks are becoming more prevalent. Clearly there are no longer
any wolves or cougars in the Northeast and that affects predation.

I'm not sure the counterfactual is really relevant. I'm just saying Lyme is
the poster child for this kind of problem. My preference would be for more
risk from wolves and more diverse ecology, with less suburbia and more forest.
If your preference is for whatever causes the least number of deaths then
you're going to have to also integrate driving, pollution, carcinogens, etc.,
into your model.

~~~
dreamcompiler
> more risk from wolves

Just to be clear, there is essentially zero risk to humans from wolves. Wolves
present a risk to livestock, and that's the reason humans eradicated them from
most of the places they used to roam.

------
nlawalker
_> Yet when patients blame failed tests and treatments for their persistent
symptoms, when they seek additional care for Lyme disease, they are often told
they suffer from anxiety or chronic fatigue syndrome. They are derided, called
anti-science, denied insurance reimbursement.

> They are dismissed in ways comparable to those experienced by their AIDS-
> afflicted brethren._

The Atlantic just published a good article about this:
[https://www.theatlantic.com/magazine/archive/2019/09/life-
wi...](https://www.theatlantic.com/magazine/archive/2019/09/life-with-
lyme/594736/)

------
edelweisser
In the Alps you can't even go into a mid altitude wood without finding a tick
or 2 walking on your dog. Hiking over 1600m is the only way to avoid them. I'm
lucky to have a dog with white fur, so I can see them before they bite but
it's a constant battle.

I wonder:

1\. if we always had them. Probably not, I can't remember seeing that many in
my childhood 2\. if there's a way to get rid of those or we're forced to have
this problem forever.

Has anyone here ever thought of building an army of tick-detector robots
powered by solar panels that can go around and grab as many ticks as possible?

~~~
eigenloss
1\. Yes, Otzi had Lyme:
[https://www.nature.com/articles/ncomms1701](https://www.nature.com/articles/ncomms1701).
However, it's possible tick populations were lower 50-100 years ago.

2\. Yes. The main issue is that nobody wants to pay for the robots, although
they're extremely effective: [https://www.cnet.com/news/military-robot-
deploys-co2-to-lure...](https://www.cnet.com/news/military-robot-deploys-
co2-to-lure-ticks-to-their-doom/),
[https://ieeexplore.ieee.org/document/1594003/?arnumber=15940...](https://ieeexplore.ieee.org/document/1594003/?arnumber=1594003)

------
crazygringo
I agree it's serious (I've had Lyme disease and so have family members), and
there are problems with positively identifying symptoms, but I don't get what
this article is asking for?

The author herself quotes:

> _For ticks, “proven and scalable control measures do not exist,” wrote three
> officials from the U.S. Centers for Disease Control and Prevention in 2018._

She ends with "Prevention efforts have failed. Do the work on ticks."

But do _what_ work? She just admitted measures don't exist.

Is she asking for an order of magnitude more funding? New research approaches?
_Are_ there even any promising solutions we haven't tried? Or is she just
asking for magic?

For someone demanding change, it feels disingenuous to not even give a cursory
description of what the current obstacles are or potential avenues for
addressing them.

~~~
sooheon
Does it really need to be spelled out? :p

1\. Incite outrage, 2. generate clicks and discussion, 3. profit!

E: revisiting this because pure snark adds nothing. I think the heart of the
issue is that the tests are inconclusive -- why can't people who care enough
look for the _B. burgdorferi_ virus itself live in the blood for a clear-cut
diagnosis?

------
docker_up
Aside from Lyme disease, I'm also personally concerned about Chronic Wasting
Disease. We have deer on our property all the time and all they do is shit and
piss everywhere.

This appears to be the deer-form of Mad Cow Disease and apparently the prions
in the feces can be spread even after it goes into the ground and in the
plants that grow from it afterwards.

~~~
evandev
There is no case of a human contracting CWD. While CWD can be an issue for the
local deer population, it is not something to be worried about. Avoid eating
brains, spinal cords, and lymph nodes of deer as a precaution.

------
someoneiam
My Lyme story is probably one of the less dramatic posted here, but it is
telling that I feel like I was relatively taken good care of compared to many
others here and elsewhere. My first symptom was the classic erythema migrans
(bullseye rash), which was painful on its own, but given that this was during
summertime in southern Italy it got unbearable at times. I saw a doctor who
told me I had probably been bitten by a spider or lizard, but nothing to worry
about. I asked him about Lyme but he insisted there were no ticks in Italy
(!)... Eventually I got low fever and terrible upper joint pains, as well as
deformed nails and fingers (the second stage of Lyme). This was still not
enough for the doc as again, there are no ticks in Italy... After a short time
Bell's palsy kicked in (severe facial paralysis and a drastic change in taste
in my case) and then I knew that I was 100% dealing with Lyme. So off we go to
Italy's main institution for infectious diseases where they tap me for an
insane amount of blood to analize, and tell me I will stay at the hospital for
maybe a week. Tests came back and Lyme was positive, even though there are no
ticks in Italy... I ended up staying at the hospital almost two months with
antibiotics pumped intravenously multiple times a day for hours. After
recovering I had to go to the hospital for health controls every 2-3 months or
so for a around a year.

And I was lucky enough to go through this during a time where antibiotics are
still effective at fighting bacterias. One of my biggest fears is entering a
post-antibiotic era, where bacterias grow resistant at a faster rate than we
are discovering new antibiotics. If we keep misusing them, to erroneously
treat ourselves, to feed livestock, pumping the rest products into rivers,
this might not be such a far fetched scenario.

------
AndyMcConachie
If you're interested in the intersection between Lyme disease and
investigations into it being a bioweapons program gone wrong there's a recent
book on the subject.

<[https://www.amazon.com/Bitten-History-Disease-Biological-
Wea...](https://www.amazon.com/Bitten-History-Disease-Biological-
Weapons/dp/006289627X/>)

I haven't read it, but I heard an interview with the author and the book
sounds well researched. It doesn't reach a definitive conclusion that Lyme
came from a bioweapons program gone wrong, but it does talk about other
bioweapons programs similar to Lyme.

------
chr1
Can gene drive be used against ticks? Mosquitos get many defenders who claim
they are important as food for other species, but even that argument can't be
used against eliminating ticks.

~~~
shiny
David Sinclair mentions a CRISPR tech to kill ticks here:
[https://youtu.be/o9Fg-usoBHc?t=410](https://youtu.be/o9Fg-usoBHc?t=410)

------
arippberger
Borrelia burgdorferi (the pathogen that causes Lyme) was named after Willy
Burgdorfer. Burgdorfer claimed that the disease was the result of a biological
weapons program that went awry. This is an interesting read:
[https://www.amazon.com/Bitten-History-Disease-Biological-
Wea...](https://www.amazon.com/Bitten-History-Disease-Biological-
Weapons/dp/006289627X)

~~~
alexhutcheson
That's a discredited conspiracy theory: [https://www.aldf.com/did-lyme-
disease-originate-in-the-easte...](https://www.aldf.com/did-lyme-disease-
originate-in-the-eastern-u-s-from-borrelia-burgdorferi-infected-ticks-that-
escaped-from-a-laboratory-at-the-plum-island-animal-disease-center-where-
scientists-were-conducting-top-sec/)

~~~
swebs
>Some claim that Lyme disease was introduced into the northeastern region of
the U.S. by a man-made strain of Borrelia burgdorferi that escaped from a high
containment biological warfare laboratory on Plum Island. However, there is
ample evidence to indicate that both Ixodes ticks and B. burgdorferi were
present in the U.S. well before the Plum Island facility was ever established.

What a lazy "debunking". Of course creating a strain of bacteria would require
the original bacteria to already exist.

------
johnfactorial
There's some healthy doubt to be cast on concepts like "Chronic Lyme."
Consider, for one example, the data here:
[https://lymescience.org/washington/](https://lymescience.org/washington/)

In this thread a poster claims that multiple doctors couldn't save them until
a "doctor" with "natural remedies" put them on a fast.

Now, I support skepticism all around; it is very healthy to get second and
third opinions when you know your body doesn't feel right. But it's also
extremely important to trust actual expertise over self-diagnosis, Facebook
groups, and so-called medicinal practitioners who hawk herbs and starving
oneself as panacea.

------
gargarplex
this summer, I got a tick bite. I immediately went to go get a prophylactic
antibiotic (doxycycline). You'd think that the pharmacist could just give me
some over the counter, but I had to go to a clinic and get a prescription –
felt kinda absurd. I wonder how much Lyme disease is attributable to the
inconvenience of the process, especially in USA where American are scared of
obscure + outrageous medical fees.

~~~
Noumenon72
We don't want 99 people taking antibiotics for every one who gets cured (about
the rate most tick bites have of giving Lyme disease), so maybe a bit of
gatekeeping is appropriate here. At least to ask "Has it been on you for 36
hours?"

Antibiotics have a major effect on your gut flora and I don't take them
lightly.

~~~
JoeAltmaier
That sounds bad, but what's the 'false negative' penalty? (Not getting
antibiotics when you needed to). Pretty high - getting Lyme disease. If it was
your kid, I'm thinking we'd all do it.

------
mrpopo
Related : Accelerated phenology of blacklegged ticks under climate warming
(ticks can survive in more areas and breed faster)

[https://royalsocietypublishing.org/doi/full/10.1098/rstb.201...](https://royalsocietypublishing.org/doi/full/10.1098/rstb.2013.0556?/=)

Ticks (and tick-borne diseases) will become widespread as the world is
warming.

------
ryandrake
One thing I must have messed from the article is: why are we not already
serious about it? There was this comparison to AIDS, but AIDS had the whole
horrible “moral” stigma against diagnosing and treating it. What ax to grind
do people have with Lyme disease? Why are doctors misdiagnosing or
deliberately ignoring it? What are the incentives? I don’t understand.

~~~
aidanfindlater
Your confusion is understandable. What the article fails to mention is that,
although Lyme disease is very real and is increasing, the disease referred to
as "chronic Lyme disease" is not recognized by physicians as either Lyme
disease or as an infection, but is more commonly classified alongside things
like chronic fatigue syndrome and fibromyalgia as legitimate suffering from an
unknown or poorly-understood cause (but not from infection). Other people,
like the author of the linked article, disagree, and think that doctors are
mistreating these patients. So there's some controversy.

~~~
sooheon
I'm curious why there isn't a "smoking gun", i.e. the actual Lyme causing
bacteria being found _in vivo_ rather than these inconclusive diagnostic tests
and questionnaires. Seems like the first step to Getting Serious.

~~~
eigenloss
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1195970/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1195970/)

You can detect Lyme in the bloodstream, but it's much easier and hundreds of
times cheaper to look for the human immune response - IgG and IgM - with a
Western Blot or ELISA. The actual Bb spirochete is so dilute in the blood that
a PCR test (costing upwards of $5k) is typically the only thing that will
definitively detect it.

The "getting serious" bit is a policy request: why is the federal or state
government paying so little attention to an issue that affects and injures
hundreds of thousands of people per year?

~~~
sooheon
There's all these linked stories of people suffering for years not knowing
definitively what they have, a 5k test to diagnose for sure seems like a
bargain. I don't understand why the CDC says chronic lyme doesn't exist and
suffers claim they think it does but they don't know for sure. Why not settle
it with a real test?

~~~
eigenloss
$5k is hardly a bargain when your insurer refuses to cover it. For some
people, $5k is about the cost of replacing their car 10 times.

------
rmind
Just some observations:

\- In my country, Lithuania, tick-born diseases have been increasingly
becoming a major problem. We had them for some time, but I think the problem
has been amplified by the climate change in the last few decades. At least,
the summers got hotter and the winters certainly start later than they used to
in my childhood.

\- Ironically, cleaner environment and stricter EU regulations on the use of
pesticides and other chemical compounds also played a role: tick population is
flourishing. The government doesn't have or at least cannot come up with some
means to control it. Spraying forests with some chemical compounds would
certainly produce serious side effects and would do more harm than good
(unless something new gets invented). There have been some discussions in the
parliament to raise the issue at the EU level.

\- There are essentially two main diseases: tick-borne encephalitis (TBE) and
Lyme disease. They are both very nasty. There is a vaccine from TBE.
Unfortunately, vaccination is not universally funded or compensated by the
government. Only for certain groups (forest rangers, members of the armed
forces, etc). Nevertheless, a lot of people (including myself) get vaccinated
and it's one of the most popular vaccines.

\- Apparently, there is also a vaccine from the Lyme disease:
[https://en.wikipedia.org/wiki/Lyme_disease#Vaccination](https://en.wikipedia.org/wiki/Lyme_disease#Vaccination)
. In 2000s, it was tried in the US, but then subsequently pulled out from the
market. It is unclear whether the vaccine really had side effects or it was
due to anti-vaxxers.

IMO, more effort should be put on: 1) large scale vaccination 2) research on
possibilities to control the tick populations.

~~~
EForEndeavour
In 2016, the US FDA approved a canine Lyme vaccine called VANGUARD crLyme [1],
and the principal investigator behind its development (Richard Marconi) is
working toward a human vaccine [2], so there's hope; availability is still
probably years away.

[1] [https://www.zoetisus.com/products/dogs/vanguard-
crlyme/](https://www.zoetisus.com/products/dogs/vanguard-crlyme/)

[2]
[https://news.vcu.edu/article/VCU_researcher_develops_Lyme_di...](https://news.vcu.edu/article/VCU_researcher_develops_Lyme_disease_diagnostic_and_comes_closer)

------
bduerst
Most of the comments here are about Lyme's disease in deer ticks, but what
really terrifies me is the Lone Star tick. This alpha-gal syndrome epidemic
appeared out of the blue in the 2000's and gives you a lifelong allergy to red
meat.

------
brownbat
New Hampshire Public Radio and Outside/In just spun off a podcast on Lyme
disease, Patient Zero:

[https://www.patientzeropodcast.com/](https://www.patientzeropodcast.com/)

I've been really impressed with the quality of journalism from Taylor Quimby,
Sam Evans-Brown, and that team on other stories. They've had stories where
they mention openly that they changed their view halfway through, or have a
reasonable debate among the reporters. I find that really refreshing.

[http://outsideinradio.org/](http://outsideinradio.org/)

------
heelix
If you get the signature bull's eye, you are lucky. My kid got it and we were
able to recognize the textbook bite signature, in addition to her high temps
and fever symptoms. They were able to test for Lymes and then aggressively do
the IV antibiotics regiment.

As an avid camper, I treat all my clothing gear with Permethrin. In addition
to keeping the flying bugs off you... they also keep the ticks off. I treat
the tick 'entrances' and socks, which makes a huge difference for the normal
ticks.

~~~
marble-drink
Do you get irritation from the Permethrin?

~~~
heelix
It goes on clothing, not skin. I'm not pestered by it.

------
b_tterc_p
I know people are concerned about using gene drives on native species, but why
don’t we use it against invasive species. Lantern flies in PA seem like a good
example.

------
the_watcher
I am close to someone with Lyme disease, and it's far more serious than I
realized in terms of impact on day to day life. What I've learned is that it
doesn't get the kind of funding or research as other debilitating diseases
because it's relatively rare and hard to diagnose, so there's simply fewer
people who go into medicine with a personal connection to it.

------
lowdose
I have noticed that certain family members are somehow attractive to ticks. On
the same forest walk , my mom would always be blessed with a tick while me, my
dad and brother never. Off course this is a very small sample size but
consistent for literally my whole life growing up across Europe.

~~~
ceejayoz
Even walking style might make a difference.

I tend to fairly carefully but rapidly pick my way along a trail. My wife and
kids do not. I'd imagine this varies the rate of exposure to things like
foliage on the edges of the trail.

~~~
mark_l_watson
I do the same. I live within 200 feet of trailheads and hike all the time. I
watch for areas of trails with overhanging plants, and avoid touching them as
I walk by.

I have also started treating my hiking boots, hiking pants, and shirt with
Premethrin. If you are careful, getting Premethrin into the general
environment can be avoided.

------
epmaybe
Serious question: do you think more could be done to help bring awareness to
patients to encourage earlier screening for Lyme disease and other tick borne
diseases? I remember being told that if I ever saw a tick on my skin or if I
had a target sign rash on my body that I should 1) take the tick with me, and
2) go to the doctor.

At least then you have a record of potential Lyme exposure in your record and
it can be brought into the differential diagnosis as a reason for your
symptoms in the future.

Like a public health campaign where you had some ads especially in wooded
areas that are Lyme endemic areas.

I think back to things like the BE FAST mnemonic (balance, eyes, face, arm,
speech, time) for stroke awareness, and feel like many people don't even know
that.

------
needsmust
> It's Time to Get Serious about Tick-Borne Diseases

I was diagnosed with Lyme disease two years after a tick bite in Nth Germany.
A strong course of antibiotics cured me of the disease. At the time I got to
learn of the chronic Lyme community (typically self diagnosed) and what the
specialist doctors are saying.

It seemed to me that the range of possible symptoms of this disease, and the
difficulty in diagnosing it, make it a nice excuse for other problems somebody
might be experiencing.

Ultimately, the best evidence I saw - the people in the hospital diagnosed
with Lyme disease tended to have identifiable symptoms, e.g arthritic joints,
while the self diagnosed complained of feeling unsociable and not motivated to
continue with working.

------
billfor
It was vanquished. We pulled the vaccine off the market.

[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/#idm140...](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/#idm140034452980864title)

~~~
lymeeducator
How about the French pharmaceutical company that shelved their vaccine before
GlaxoSmithKline's? I will try and find the article, but as I remember it,
their vaccine worked on the OSPa protein and had a number of proven and
harmful side effects. It turns out that the Lyme bacteria is hard to vaccinate
for since it can change its outer surface proteins to evade the antibodis
pretty easily -- in the end, the immune system is much better on its own than
relying on a vaccine.

~~~
DenisM
American vaccine was 90% effective with side effects on par with non-
vaccinated population. It was pulled thanks to the antivax crowd:

[https://www.vox.com/science-and-
health/2018/5/7/17314716/lym...](https://www.vox.com/science-and-
health/2018/5/7/17314716/lyme-disease-vaccine-history-effectiveness)

------
kndjckt
It looks like it's getting worse
[https://www.cdc.gov/lyme/stats/maps.html](https://www.cdc.gov/lyme/stats/maps.html)

Either this means more diagnoses or more people being infected

------
alfon
For whom it may concern, regarding specifically a Bb infection:
[https://clinicaltrials.gov/ct2/show/NCT03891667](https://clinicaltrials.gov/ct2/show/NCT03891667)

------
fallingfrog
We would already have a vaccine against lyme, anaplasmosis, etc if they were
diseases that affected rich people. But since it’s mostly poor people living
out in the woods that get Lyme disease, nobody cares. Nobody important anyway.

------
blisterpeanuts
I'm a deer hunter. I'm out in the woods scouting a few times in the late
summer, then I'm out there every day in the fall for about two months.

I treat everything with permethrine: clothes, socks, boots, hats, orange vest,
backpack, ground blind, even the tripod chair I sit on in the blind.
Permethrine, derived from the chrysanthemum flower, kills ticks (as well as
ants and bees). If one lands on your pants or shirt, it will quickly die. But
permethrine is considered harmless to mammals once it's dry. It also doesn't
hurt to spray some deet on your exposed skin (face, hands etc.). Permethrine
survives several washings.

As soon as I come back from a hunt, I strip and take a hot scrub shower. This
is probably the best way to rid them from your body before they latch on,
which usually takes a few hours up to 24 or so before they settle in a
desirable spot.

Reducing the deer population is an excellent way to reduce the adult tick
vector; deer can travel quite far and spread tick populations quickly.

The nymph phase of the tick life cycle is slightly different; they are on mice
and other rodents until they reach a certain size. You can actually reduce
this population by putting out tick tubes everywhere in your yard, under
brush, under wood piles, wherever rodents might tend to go. The tubes contain
cotton or dryer lint sprayed with permethrine; the rodents take bits of the
material back to line their nests, and it kills the baby ticks. I do this
every spring, in the hopes it will rid the vicinity of many ticks.

Lyme is serious business and once you get it, it can take years if not forever
to get rid of. Lymerix was a vaccine developed in the 1990s that was about 80%
effective, but unfortunately an anti-vaccine group sued the company
successfully and they pulled it off the market. The CDC subsequently
determined there was no validity to the plaintiff's claims, but by then the
deed was done. Probably hundreds of thousands of people suffer from Lyme today
because of this lawsuit.

There are new vaccines in the pipeline that sound very promising; they target
common proteins among the family of Lyme bacteria (there are about a dozen
known species of borrelia bacteria) so that one shot should protect you. Of
course, promising doesn't mean guaranteed, so we'll just have to wait and hope
this thing can be beaten.

In the meantime, we can focus on attacking the vectors: reduce the
overpopulation of deer and rodents that carry the ticks, encourage more use of
permethrine and other insecticides. Monhegan Island, off the Maine coast, had
25% prevalence of the disease until they eradicated the deer population
(originally brought there in the 1950s-60s as a tourist attraction) and new
cases of Lyme went down to almost nil.

We can encourage more predators like hawks and owls and snakes, all of which
work to keep the rodent population in check. Flocks of birds eat ticks, but
bird populations have greatly decreased in recent decades, so we might think
about ways to bring them back, perhaps through reforestation and limiting
exurban development that removes habitat.

------
Circuits
My roommate recently fell asleep in a hammock and woke up covered in currently
feeding ticks and tick bites from ones that had their fill and left. It's been
about 3 weeks since then and he doesn't seem to have any forgone symptoms. It
seems odd to me that... is he just lucky?

~~~
aphextim
Over the course of my life (I am in my mid 30s), I have gotten probably 75+
tick bites.

When I was a kid I lived in the country, about 20 minutes from the nearest
town and would have a tick-check every time I returned from being outside
during the times when ticks are more prevalent.

Many times you would have ticks but they didn't get a chance to bite yet
(Thankfully my parents did these tick-checks all the time, I hated it at the
time but looking back I understand their concern).

I usually get at least one a year (tick that actually bites me), and although
recently (Age 30+) I have been getting them checked out/monitor them more
closely than when I was a younger, I've been lucky myself to not get this
disease or any other ones related to ticks yet.

If anyone is curious as to this location, I live in the Upper Peninsula of
Michigan.

------
lyme
Throw away account here. Writing on mobile so excuse the short sentences. Been
dealing with Lyme disease since 2011. Main symptoms have been fatigue (both
mental and physical), brain fog, headaches, migraines, cold extremities.

Anyone reading this dealing with Lyme has I'm sure heard of many different
treatment protocols to get better. In fact, I've got a list of over 50
treatments from doctors and patients I've saved in a spreadsheet.

To keep it short, I've tried many different treatments and have been very
skeptical of most of them and most have not had any meaningful improvement.

Talked with a contractor who was doing work for me who had to close his
business because of chronic Lyme. He tried all different doctors and protocols
and he found a solution that cured him. It's going to sound crazy and I'm sure
it will get downvoted but I'd rather get the information at least out there
for anyone to consider. The contractor mentioned this guy called the Medical
Medium. This medical medium guy says science actually is wrong about Lyme
being bacterial, but is actually viral. I know it sounds crazy. I know there
is no science behind it. Try to keep an open mind. I eventually read the
theory behind it, tried the protocol, and am now 5 months into it. Best I've
ever been in terms of symptoms.

Again, I'm a guy who only follows science. I don't try to get into stuff that
is considered out there, but I was desperate enough to at least consider it
and try it. Maybe read it and consider it. And please don't say I'm spreading
unscientific information. I know that I am but for people who have an illness
without a defined solution, I think it's sometime good to being open to
considering an unconventional approach.

[https://www.medicalmedium.com/blog/herpes-
viruses](https://www.medicalmedium.com/blog/herpes-viruses)

~~~
losteric
Medical Medium is bullshit. Dude claims a spirit from the future psychically
communicates advanced medical knowledge to him alone... garbage like celery
water curing autoimmune diseases.

His website has an extensive legal medical disclaimer that basically says
"none of this is medical advice, if you listen to me it's all on you"

