A single prophylactic 200mg dose of Doxycyline prevents Lyme disease
cdc.gov
cdc.gov
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. [...]"
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.
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.
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.
I fear that risk over the risk of e.g. a 10-day course that is routinely taken prophylactically around the world.
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.
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.
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.
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 )
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.
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).
Wait, what? Based on what reasoning? Was this before or after the Affordable Care Act?
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.
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.
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.
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.
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.
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.
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/
That said, tick bites are mostly avoidable by following the various best practices that have been established.
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.
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.
our food is toxic and everyone is developing stomach and autoimmune conditions so this is also more likely
It didn’t work btw, and I ended up needing accutane, which left my lips ravaged and bleeding for a year.
I will not reach for drugs until I have done everything I can in good faith with food and meal timing (24 hours between meals).
This is a great approach and I don't want to discourage it, but there's a spectrum of cystic acne. Honestly, I'm basing my comments more off personal experience (different people close to me have used Accutane), but I'm not sure how often diet is the cause of (non-simple) cystic acne, although, granted, I'm by default thinking of the more extreme cases. I had a single cyst under my cheek for a semester that dissolved on it's own - never considered Accutane for such a mild cyst. On the other hand, a close associate of mine developed severe cystic acne after being prescribed and using different birth control medicines. The symptoms not only continued, but got worse, well after ceasing these medications. No diet change was going to fix this - Accutane changed this persons life. After going to a few doctors seeking treatment, they were hesitant to prescribe Accutane to this person unless there were no other options. From what I've read online and stories I've heard from this person, this seems to be the norm - if you get prescribed Accutane (withholding doctors who jump straight to medication), you likely have a non-trivial case of acne that won't be reduced by say eating less chocolate. It's like treating depression - some people are able to solve other issues in their life that improve the depression tremendously, and other people have certain brain chemistry imbalances that make this process impossible _until_ they're treated with anti-depressants.
As another anecdote - I got rid of my acne when I discovered benzoyl peroxide creams via an XKCD comic.
I didn't have severe cystic acne though. Diet has nothing to do with acne.
I wasn't going to complain about feeling better than normal, only a little disappointed after the scrip ran out.
I had hypothesized that the antibiotics were either giving my immune system a boost which was tamping down some underlying inflammation somewhere, or were helping fight some intestinal flora that normally cause some subtle mood effects that I wouldn’t normally notice until it was absent. But I was never able to find anything online to pin it down one way or the other.
Assuming that was written intentionally, I had no idea that this was a word, and that this was a usage. I’ve learned something.
Scrip is a word, but its meaning is different and it's close to archaic.
FWIW, Wiktionary lists both: https://en.wiktionary.org/wiki/scrip#Etymology_4
It's being used to treat autism symptoms (social).
Might be a similar mechanism
We get lots of folks coming here to hike and camp and backpack in the Summer months, but most locals don't. We go to creeks and streams and lakes and hang out on the rocky banks and gravel bars and swim, boat, canoe (float trips), and if we camp out we set up our tents on those rocky banks.
I (and most everyone I know here) treat clothes I wear when working outside with permethrin. I spray my shoes, socks, denim jeans, and T-shirts. Those will last at least a month and a couple washings.
We also do "Tick Checks" when we get inside after being outdoors. We do get out, most of us live in forested areas and we have gardens and lawns to tend to, so we do get bit, there's no getting around it, but we get those ticks off fast. I've never had an engorged tick on me.
And I treat my clothes when I go hiking, camping, and backpacking in the cool season too (Late Nov - Mid-March), but the ticks are not near as bad then.
So, those practices likely also have to do with why very few locals get Lyme.
Would occasionally take doxycycline. My issues would clear up for a few weeks.
Mentioned this once to a doctor neuro-ophthalmologist).
He grew interested and started asking about how dry my eyes and mouth were. I said they were fine. He insisted on testing. I failed. I was just used to them being dry
Declared I had had Sjogrens. An autoimmune condition. That he had seen many people in his decades that doxy helped with Sjogrens. Later this was confirmed.
Said I shouldn’t listen to any doctor that ignored the antibiotic link. Every single doctor I’ve talked to thought I was crazy for suggesting their was a relationship.
I then discovered the Marshall plan which is super controversial. Basically that some auto immune‘s are caused by a very low level infection. Maybe in the mitochondria. Doctors mostly consider that a quack theory.
I was tested for Lyme. (Negative) As symptoms are very similar.
No idea. A course of doxy will give me about a month of feeling great. But doctors just say I’m lying.
Would love to be able to figure a way to test the theory.
California is a tiny bit lower incidence rate than Tennessee, but both are waaaay down the list.
https://www.statista.com/statistics/742936/incidence-rates-o...
Most years, I've had no issues with ticks. But after a rainy winter (like 2010/2011, or 2018/2019), I've been hiking with people who have gotten ticks in the Santa Monicas and even in the San Gabriels.
Spring of 2011 was the worst. After a hike at the Circle-X Ranch, one of my companions had two ticks, and two of us had one apiece.
[1]: http://usprobioticguide.com/PBCAdultHealth.html?utm_source=a...
Guess I'll medicate myself as usual.
Nice thing about ticks is it takes awhile (like 16-24+ hours) to transfer Lyme. Use a fine-tooth comb on scalp and do a thorough body scan after outdoor adventures.
I live up north and my county is a bit of a hot spot actually.
If you do get bit, don't panic. Typically the tick has to be attached for greater than 24hours before you are at risk since transmission usually occurs when the tick has to regurgitate digested blood back into you.
I've been bit too many times to count while surveying and doing site visits to hike creek beds in the spring. Never came down with Lyme. Always found the tick before it'd been on for too long.
You also learn to feel them and pick them off before they bite.
Ok now i hate ticks even more
Of course that has mostly only helped me when going into areas I know are full of ticks from past experience and can navigate without using trails.
You should be cautious but not "deadly afraid."
Checking for ticks isn't that hard, and bring sharp tweezers if you go out for a day hike or a camping trip. Just make sure you grab it from the head/mouth and don't squeeze the body. I was always told that if you catch and remove it within the first ~24 hours you are reasonably safe.
Anecdotally, at least half the people on the street I grew up on in Massachusetts had it (and this was before the idea of long term Lyme became widely known, these were acute infections).
If you do get bit though, the bite is very obvious and you'd know. If you catch the tick, you can send it in for testing, although it might be easier just to take the doxy.
I was bit by a tick in Marin a few years ago (I caught the tick as well), got very nervous about Lyme and researched it thoroughly, was much less concerned after consulting a few folks in the Bay Area. Lyme seems rare here (UCSF estimates 2-15% prevalence in ticks but its far less common than on the east coast).
though i also no longer live in the northeast, i hear it's a wicked bad year for ticks.
it's always a bad year for ticks, it feels like :(
still hopeful for a vaccine, though. https://www.cdc.gov/lyme/prev/vaccine.html
This seems slightly different than outright 'preventing' as the title currently says.
> The authors concluded that a single 200-mg dose of doxycycline given within 72 hours of a bite from an I. scapularis tick was 87 percent effective in preventing the development of early Lyme disease
New Hampshire Public Radio did an entire podcast series about Lyme disease [1].
Both are worth a listen. Patient Zero from NHPR was absolutely eye-opening about the medical system and Lyme
[0] https://www.vpr.org/podcast/brave-little-state/2021-10-07/wh...