The Lyme Wars (2013) | Hacker News Reader

The Lyme Wars (2013)

newyorker.com

76 pointsgwern50 comments

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?

I tested positive for Lyme a couple of months after noticing what I thought was a spider bite. It didn't have the distinctive bullseye, but it gave me a sunburn-like rash over my entire upper arm. I took three weeks of doxycycline.

I can't definitively point to Lyme as the cause, but my knees were a little worse than usual for a while, and my hearing got worse in one ear (not yet recovered).

On the plus side, I discovered probiotics, which seem to be good for my, er, digestion.

It's funny, even though I had just seen Daryl Hall talk about his struggle with Lyme disease on Live from Daryl's House, it didn't occur to me that the bite on my arm might be from a tick.

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).

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.

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

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.

I found a deer tick on myself earlier this summer. Even though it is "not possible" that I was infected in the 12-24 hours it was attached, I insisted on treatment. Three weeks of amoxicillin is not that bad. Chronic Lyme is. I had to advocate for myself in this matter, and I recommend anyone in my position do the same.

I was also treated for initial-stage Lyme about ten years ago, quite successfully, although I developed Bell's Palsy and lost the use of half my face for a few days. That was interesting. Lyme is garbage.

I'm sitting here with an angry-looking bulls-eye from a tick (scapularis) that was attached for less than 12 hours. (It wasn't there when I went to bed and was there when I woke up.)

With a previous infection I was eventually unable to walk without crutches and had such intense jaw pain that I couldn't sleep without a mouth guard. This is a nasty bug and not to be trifled with.

I was on antibiotics for a year - in retrospect it may have been a tad stupid, but I had felt so terrible for so long I was prepared to take the risk - given the opportunity, I think most people in the same position would do likewise.

The complication with such short doses, and the discussion of them, is that they provide a short bout of relief, and then the infectee stops taking them - then the bacteria can reinfect them. It often isn't mentioned which specific antibiotic was used. It is typically azithromycin - known as Zithromax. Could you verify this?

There is no magical barrier. Some young children have been infected with extremely virulent Lyme after only 15 minutes of nymph tick attachment. More (experimental, not rhetorical) research is definitely necessary.

The comment about fungal infection destroying one's body badly needs a citation.

I took Doxycycline which is the recommended antibiotic against Lyme disease. There is no empirical evidence that taking antibiotics for longer than two weeks helps against Lyme.

Citation needed... THERE, I finally found it http://cid.oxfordjournals.org/content/31/4/1107.long Okay, this was an extreme case. I was mistaken, the woman took the antibiotics for a longer time and intravenously. However, it's still true that the risk of fungal infection is increased by a substantial amount.

Here is another case displaying the dangerous effects of long-term administration of antibiotics which resulted in death http://cid.oxfordjournals.org/content/51/3/369.full (but not because of fungi)

This way of treating Lyme Disease literally kills people, I am not exaggerating.

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.

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.

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.

What disease is this?

Powassan virus:

https://www.google.com/webhp?sourceid=chrome-instant&ion=1&e...

"I've even started wearing boxer briefs just to keep them out of there at least."

Sadly, doesn't work. I've found two attached under the elastic band. Maybe they like the heat?

Yeah, the CDC could do better, hopefully more empirical research will give more clues on the people with long-term effects.

ILADS integrity roughly equivalent to an anti-vaccine organization. Pseudo-science, misinformation, lots of hand-waving, and immediate dismissal of any data that doesn't fit their preconceptions.

The CDC is a flawed bureaucracy, but at least there's the hope that once more empirical medical research has established better treatments they'll base their approach on that. ILADS will be telling people to eat weird diets and use magical treatments for a few decades after a fully effective treatment is out there.

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.

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.

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.

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)

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.

Talking to a lot of hunters, many don't recognize the Lyme threat, since it is a relatively new phenomenon, especially outside of New England. I also suspect that many outdoor people have been exposed to Lyme and don't know it, just had a "summer flu". Finally, hunting season (Oct to Dec) isn't a high risk time-- only larger adult ticks are active in October and never active when temps go below 40 degrees.

They want to be the population control

My understanding is that deer are required for long-distance transport of black legged tick populations, but are not absolutely required to complete the full two-year life cycle.

Nope. "Even though adult ticks can feed on other mammals such as dogs, cats and raccoons, the female adult tick requires a blood meal from the deer before she can lay her 2,000 to 6,000 eggs." http://www.deeralliance.com/node/10

As an aside, I grew up in rural New Jersey (yes, such a place exists), and as long as I can remember we've always called these "black legged" ticks "deer" ticks.

Edit: as opposed to "wood" ticks (quite visibly distinctive http://www.tickencounter.org/tick_identification/rocky_mount... - in spite of their name, quite common in the woody regions of NJ), which don't carry Lyme disease. In my experience, this type of tick was much more common than the "deer" or "black legged" tick in NJ.

I'm a fan of reintroducing wolves - they used to keep the deer population in check.

> Lyme is now the number one infectious disease in New England.

Do you have a source for that claim?

edit: asked an ER doc, they joked "that's ridiculous, it's the common cold". Also my research and the doc suggest that Lyme is second to Chlamydia.

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

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

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...

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.

Don't the ticks get it from humans though?

No the ticks get Lyme from the deer mouse, which is the reservoir species for the bacteria. After they feed on mice, they can give humans Lyme as nymphs or later as adults. http://www.tickencounter.org/tick_identification/deer_tick_l...

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

Reducing Lyme infections by 80% would still be "making any headway" in my book.

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

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

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.

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

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.

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.

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.

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.

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.

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

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

They drill into crevices in muscle tissue and are able to avoid the lymphocytes. It's hard to effectively become immune.

Reply on news.ycombinator.com