Comment by Alex3917 | Hacker News Reader

Comment by Alex3917 | Hacker News Reader

Not accurate. If you read the original research study this recommendation is based on, it prevents the bullseye rash, which they used as a proxy measure. It's unclear whether or not it actually prevents lyme.

I personally got bitten by a tick, did the prophylaxis dose, and then developed joint pain which continued until I did a full 21 day course. Yeah it sucks not being able to go in the sun for an entire month and having acid reflux, but imho the evidence in favor of the prophylaxis is extremely dubious.

source: https://www.nejm.org/doi/full/10.1056/NEJM200107123450201

"A theoretical risk associated with prophylactic antimicrobial treatment is that it might alter the disease presentation so that the characteristic erythema migrans rash might not be manifested in treated subjects, in whom a more subtle, nonspecific illness might develop or asymptomatic seroconversion might occur. In such circumstances, an unrecognized latent infection might eventually result in arthritis or neurologic disease. We believe that this is unlikely for several reasons. [...]"

I am right there with you. Took one week Doxy after being bit and got a rash anyway. About two years later mental fog and all our hell took over, tested positive but doc wouldn't give me antibiotics because I took the initial one week "and it's not possible that I have Lyme". Years later I have lost a business I founded and countless months where I couldn't even think let alone function.

One day IS ABSOLUTELY not enough and if I had my way I would now take at least one month.

As further reference your insurance won't cover your treatment once it gets bad, mine ended up being about $3000 per month for years just to get back to working 25-30 hours per week.

> As further reference your insurance won't cover your treatment once it gets bad

Wait, what? Based on what reasoning? Was this before or after the Affordable Care Act?

My understanding is that Lyme disease treatment is basically not covered by anything, beyond initial treatment. The suggestion of the possibility for Lyme to have long-term effects that need a much longer course of treatment is not scientifically accepted, but lots of people have reported symptoms of Lyme disease long after an initial infection.

My wife has long term Lyme and in fact very little is covered by insurance. Our experience has been that the majority of Dr's throw up their hands and say they don't know how to treat it so it's either not real or it must be something else causing it. Once you find a Dr to treat it insurance rarely covers much of it. All of this despite many many cases existing.

Welcome to the world of rare (or at least not common) chronic diseases. Private companies work by firing their least profitable customers. If you have a less common disease, the insurance company can simply claim that your preferred treatment is insufficiently backed by data.

With a small patient population, there is no incentive for for-profit companies to fund a study. And because few can afford the treatment, you can't get real world data to use in place of a study.

> Private companies work by firing their least profitable customers

Are there any co-op or non-profit health insurance companies available to join?

In New Zealand the single biggest health insurer is a non-profit society, Southern Cross Health Insurance[1]. Unimed[2] is #4 and it specialises in company plans even though it is also not-for-profit.

They are both very cheap compared to US plans, in part because they only need to add elective or improved cover on top of the government public health system (which is mostly free to use, but outcomes can be good or bad depending on the specific medical issue). Government healthcare doesn’t have quite the same perverse incentives for chronic healthcare, however it still has cost limitations so it isn’t perfect.

[1] https://www.southerncross.co.nz/society

[2] https://unimed.co.nz/about-unimed/

Not that I've found, and there isn't much consumer choice since so much is built around the employer-provided model. You've got one for-profit entity making decisions about the offerings of another for-profit entity, and either one would happily fire you (either as a patient or as an employee) for making costs go up.

The closest US equivalents to the NZ elective insurance is probably the Medicare Supplement plans. Non-profits like AARP (a major US lobbying group / non-profit for retired people who use Medicare) sell their branding rights to for-profit companies like UHC. So even if you go through a non-profit, the actual operator of the insurance plan is a for-profit.

This is a touchy subject, but the gist of it is that nearly all evidence points to post-Lyme complications being due to something other than ongoing Lyme infection. However, there are a lot of alternative medicine doctors who try to treat post-Lyme complications as ongoing infections that they claim are too hidden to be measured or detected. They want to treat the "hidden infection" with extremely long courses of very powerful (and expensive) antibiotics.

The problem with this theory is that when studied under double-blind conditions, the post-Lyme patients who receive high dose antibiotics don't actually do much better than those who receive placebo. Similar numbers of patients in both placebo and antibiotic groups have recoveries, but the antibiotic cohort has higher rates of adverse effects. Any time you have evidence like this, insurance companies will refuse to cover these treatments.

It's a touchy subject because post-Lyme symptoms are very real, but the cause of those symptoms isn't really understood. Patients who are desperate for answers are drawn to the high-dose, long-term antibiotic treatments because it gives a convenient explanation and a convenient treatment option, but the real-world results don't really support it. There are a few researchers out there who are still trying to prove otherwise, so it's possible that we'll get some different information later.

Sadly, there isn't much in the way of treatment knowledge for how to actually deal with post-Lyme complications, other than going for large batteries of neurological and immunological testing and hoping that something turns up. Beyond that it's largely palliative care and rest while the patient hopefully gradually recovers.

Dude this is industry swill. There is absolutely no evidence for "post Lyme syndrome" done by any legitimate (read: non insurance backed) research team.

Proof?

Check the study where ticks are introduced into a room with post Lyme patients. Spoiler: ticks bite post Lyme patients and end testing positive with Lyme disease.

Conclusion? Post Lyme is Lyme, insurance companies are on the hook for billions if they gave to cover that... So. Yeah. There is incentive to not do that.

Can you post a link to this study? If true, it's really interesting...

What did your treatment end up being? Did you take long term antibiotics?

There isn't a ton of boiler plate here. I was pretty lucky in that unlike most patients I actually felt better when something was working.

That didn't mean it solved the problem but it did mean I had some hints as far as what might work and feed back to pass to my second, third and fourth opinions.

That said insurance hides behind "medically necessary" procedures and medications.

In the real world if you are a tech founder (I was) you are betting on your self and hoping to make the right decisions. I made just about enough to stay alive and not go bankrupt but no where near good decisions to give you or anyone else any advice on what might work (you could have any number of different co-infections which each would change the calculus on which drugs might help).

The medical insurance racket has everyone hypnotized into following their financial interests. Go to a new doctor and say the magic words "no insurance, im paying out of pocket" and suddenly a new, often times very affordable hidden cost menu appears, a menu doctors are contractually prohibited from showing you if you are insured. It's the reason the first question you're asked at the front desk is "do you have insurance." Out-of-pocket, office visits are 150 to 300, follow ups are 40 to 75 procedures are a fraction they quote when youre insured and copaying costs, and most importantly, your doctor is free to treat you, without insurance cost restraints bending his medical judgement. Its a whole new ballgame.

My Wife has long term Lyme and the cost for us aren't quite that much but close and can also confirm that insurance will cover very little of it.

Do you still test positive?

> doc wouldn't give me antibiotics because I took the initial one week "and it's not possible that I have Lyme"

Why would you accept that response from a doc if you were confident you had symptoms of lyme? Get a second opinion, or straight up fire your doctor.

Correct. That is what happened.

The issue is that bullshit as listed in the title of this thread makes it that much more difficult for actual patients, who are going through their life collapsing, to do that.

Yes second opinions. Yes get more than one day of doxy. Yes antibiotics are not enough (but we're a requisite for me getting better).

Lyme is more expensive so much worse than anything you have read once you have made the wrong call and accepted too little doxy after being bit. Do not accept one day, don't accept one week, and demand one month of doxy which will cost you maybe $40 out of pocket but may save you the $200k (and counting) it cost me.

I truly would not suggest abusing this, but doxycycline is currently used as an antimalarial.

If you actually need it quickly, call a travel clinic and say you are going to somewhere with malaria soon, forgot to get one, and you would prefer doxycycline. (Iquitos, Peru fits this bill) Say you’re going for at least a month.

Alternatively, if you have a primary care, they will also usually write for this without too many questions. (Usually just calling you back after they verify the dosage as an antimalerial )

Edit: if you don’t have insurance, use something like GoodRx or just call around several pharmacies first to get a cash price before you have your doctor call it in.

When I needed it for travel, it would have been $100+ at CVS out of pocket, but was $13 (I think at Wegmans )

This is one of my biggest gripes with the American medical system. Every physician is entitled to act like it's his duty to play global health director rather than attending physician.

Pro-tip: take a trip to central or south America, and buy over-the-counter antibiotics from a farmacia for pennies on the dollar.

Source: I inherited this wisdom from Kari Mullis, Nobel prize winning inventor of PCR.

Seriously. I hate having doctors dole out prescriptions like priests handing out indulgences. I wish 90% of prescription meds were over the counter.

It's the same with everything else in this world. People tell others to go to the doctor, dentist, get an electrician, a contractor. It's all bullshit. Go on youtube, investigate all options, execute. Everything is pennies on the dollar and you will feel better.

Kary Mullis has some really weird beliefs, such as astrology and HIV denial. His work on PCR was brilliant but I wouldn't take medical advice from him.

That said, I think long-term antibiotics are appropriate if they help with symptoms. My dad developed an autoimmune reaction from long-term doxycycline though, so please do check in with your care team if you go the Farmacia route, at least for labwork.

Agree I would never consider long term antibiotic use.. but in addition to the risk of too much antibiotics, there are many pathogens which can be dormant/suppressed for years, so there is also hazard to completely avoiding antibiotics for decades.. which is the defacto state many Americans end up in if they don't have a probably treatable acute infection.

I fear that risk over the risk of e.g. a 10-day course that is routinely taken prophylactically around the world.

I understand why the advantages of this approach, but at the same time, we live in a world where people abuse antibiotics. As a result, microbes are rapidly developing resistance to antibiotics, and antibiotics are not an infinitely renewable resource.

So I understand why the doctors are hesitant to hand out antibiotics on a whim. There's not candies. And we all want to avoid a situation where no amount of antibiotics will cure your Lyme, UTI, STD, or tuberculosis.

But all of this caution is negated by feeding cattle antibiotics as a matter of process on feedlots.

You can order whatever you want from Indian online pharmacies. Assuming you think you know how to prescribe antibiotics for yourself which is a dangerous mindset

Once I was actively taking doxycycline when I went for a walk through the woods with some friends. After the walk I took a shower and made sure a tick didn’t catch a ride. Put my clothes back on and flew home the next day. Fast forward a week, I’m hanging at my in-laws house when I scratch my leg and feel something off. Pull my pants up and there’s a tick, but it looks flat. My nurse sister jumps into action and tweezes it’s off but she comments it’s dead.

I figured either I became The Tick (TM) or the doxy in my bloodstream killed the tick. It’s been over 7 years and no signs of Lyme nor desire to latch onto someone’s blood stream so im going with the doxycycline killed the tick.

I wonder if you shook your clothes out before putting them back on.

I did! But that’s likely how it made its way onto me

As an outdoorsy person I just want that damn vaccine to come back. Even if its the weird one that is very similar to what you can currently give to your dog it would be a lot better than nothing.

Thankfully apparently Lyme either has not or is not common yet in the western US. I'm crossing my fingers we get a new vaccine before it does.

At this point there are so many common tickborne illnesses, plus many that haven't even been discovered, that I don't see having a vaccine against only lyme as being a huge game changer. I mean don't get me wrong, it would be great, but I don't think it would suddenly make it safe to go morel hunting or whatever while wearing shorts.

That said, tick bites are mostly avoidable by following the various best practices that have been established.

Tick bites are not mostly avoidable. It is mostly avoidable to have one on you for > 24 hours by checking constantly. Numbers of ticks have increased the past 2 years in my area of NH. I have gotten them walking from my car to the house. Also if you have animals that are treated with tick medicine they bring the ticks inside and then the tick drops off so you can get them in your house.

Can you wear a Tyvek suit (the kind with the attached booties) under a Nomex flight suit with packing tape wrapped around the joints where your suit meets your boots and gloves? Spray Nomex rated permethrin on the flight suit, boots, and gloves, of course.

Yes, but it won't keep you from getting COVID.

You should be able to get rid of them near your house though. E.g. by keeping grass trimmed, removing any plants they like, planting persimmon trees to attract opossums, etc.

I can't do my job without risk of tick bites, and even if I did my dog would bring them inside anyways. I took three of them off of me on my car ride home today, though none were attached yet.

That said, I've had plenty of deer ticks attached to me over the years and have never had Lyme disease. I kind of get a kick out of hearing about people bringing ticks in to the doctor when they get bit to see if they should be worried. I'm pretty sure my insurance would find a way to kick me off if I did that.

Pfizer and Valneva are working on one: https://www.pfizer.com/news/press-release/press-release-deta...

While the backlash against Lymerix wasn't really deserved, the story around it is somewhat complicated and it wasn't really a great vaccine. (And Lyme seemed to be less of a significant health risk at the time.) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/

I was bitten by a tic when I was a kid, maybe 30 years back, got the target rash, went to the doctor and got some antibiotics - no idea which ones, and IIRC I didn't take the full course.

Around 5 years later I got reactive hypoglycemia, an autoimmune condition. Though thinking back, it may have started developing shortly after the tic bite.

Around 10 years after that, I got 2 separate skin conditions, also autoimmune in nature.

Around 10 years later, I developed more autoimmune issues, small fibre neuropathy and CFS (chronic fatigue syndrome) - so I have constant neuropathic pain, constant muscular pain, bad brain fog, chronic fatigue and PEM (post-exertional fatigue).

I have no proof that the tic bite is the root cause, and Lyme tests at the time the symptoms came on were negative; still, I can't help but wonder if the actions of that tiny tic, 25 years back, were the cause of ruining my life.

if you've taken antibiotics this is a more likely cause

our food is toxic and everyone is developing stomach and autoimmune conditions so this is also more likely

I don't understand; are you claiming that anyone who ever takes antibiotics is putting themselves at risk of developing autoimmune conditions?

yes of course. altering the gut microbiome is well established at this point to create deleterious outcomes potentially years down the line. But I'm saying our food in general is pretty toxic compared to what it was a hundred years ago. It i s drastically more processed and has much higher concentrations of unregulated and regulated chemical contaminants compared to ever before, and our physiology has not evolved to tolerate these things, so there is again higher potential for problems.

It didn't work for one woman I know. She took the single dose and still ended up getting a fever and Lyme several weeks later.

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