Doesn't seem like it would be widespread usage given the checklist they provide. Title is a little misleading; it's not just "a doxy a day keeps the lyme disease away!" or similar.
The article is about prophylactic use in persons who have had a tick removed that was attached for more than 36 hours. It would have no impact on levels in the tick population (as it's given after the tick is removed) and should have no impact in the human population (considering how low the proportion of people with ticks attached for more than 36 hours is)
I'm not worried about tick-borne diseases in this context (completely agreed with your point there), but rather all the other things that doxycycline and similar drugs are used against.
This would be of particular concern if Borrelia bergdorferi were spread from humans into the natural host pool. Without that, the selection pressure for a doxycycline-resistant variant of B. bugdorferi is low to non-existent.
> 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
Had to take doxycycline for 2 weeks after a tick bite. Man does that stuff destroy your digestive system. 7 years ago was on a date, just casually walking down the street. Coughed a couple times for no particular reason but my doxycycline lined stomach didn’t like that and boom projectile vomiting. Luckily he thought it was funny/ felt bad for me.
I guess that depends on the person susceptibility to side effect. I had 3 weeks of doxycycline for unidentifiable bug bite and I didn't notice any side effects.
I had treatment 100 mg 21 days BID for borreliosis and was careful to always take with a full glass of water, as directed. Only noticeable side effect was affect changes. 9/7 would take that drug again.
Can you elaborate on affect changes? I had a similar regimen and experienced a weird sense of mental clarity and sociability for a couple of weeks after. Never have figured out what the mechanism was.
Positive affect changes are a noted possible side effect. The mechanism is unknown. Some scientists believe it's the direct action of the drug on the brain, but others believe it has something to do with altering the natural intestinal flora and a vague "gut-brain connection". It's an area of research waiting to be tackled.
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.
Maybe. But severe/cystic acne and the like are rarely solved so simply by dietary intervention. If the acne was so bad as to warrant an Accutane prescription, then my guess is that diet would not have helped much. Accutane can take a large toll on the body but is often one of the most effective tools in eradicating acne long term for those so strongly impacted.
> I will not reach for drugs until I have done everything I can in good faith with food and meal timing
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.
Mine cured up with: Glycerine soap 2x daily, benzoyl peroxide 2x daily, and sometimes erythromycin 300 mg daily, along with erythromycin alcohol wash, and sometime nitrogen facial sprays.
I didn't have severe cystic acne though. Diet has nothing to do with acne.
All very well, but my (moderate) acne was caused by… carbs. I would much rather have both acne and carbs, than neither. Accutane, of course, nuked it and it never came back.
Interesting! Took doxy for months at a time, with a year being the longest ever taken it. The US military uses it as Malaria prophylaxis, so can end up taking it for a pretty significant amount of time. Never really had an side effects I can recall, but was in my early 20s at the time as well.
Before any round of antibiotics, healthcare ought to collect a fecal sample for subsequent fecal transplantation. The carpet bombing of the GI with antibotics and reestablishment shouldn't be left to chance since something bad might develop or lack beneficial strains.
Fascinating. Note that a low-dose daily doxycycline is an effective and common malarial prophylactic as well, with a different (I'd argue less severe) side effect profile than Lariam/Mefloquine.
My experience is that all antibiotics in that category mess with your head to some extent. I found that minocycline was the worst, though, and gave me horrible dizziness.
Supposedly It can increase cranial pressure.
IIH support forums are filled with people saying to stay away from doxy. Some say It caused permanent increases.
That's Lariam, yep. I can vouch for "a bit nutty", among other unpleasant mental issues. It's also inexpensive and dosed weekly rather than daily for chemoprophylaxis.
If they put you on probiotics at the same time, it might have been that. Took me weeks to figure out that it wasn’t the meds making me sick, it was the probiotics they recommended to keep the meds from damaging my gut. I just didn’t tolerate them well for some reason.
Last I checked, the literature was somewhat equivocal about the benefits of "probiotics in a pill" anyway, compared to something like a tablespoon of fresh lactofermented sauerkraut twice a day. That conclusion matches my personal experience too.
The literature is actually quite robust on the benefits of probiotics. Take a look at the different peer-reviewed studies just on this list of products sold in the U.S. [1]. The quality of these studies is quite high, and highly scrutinized.
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.
"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. [...]"
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.
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.
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 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.
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.
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.
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.
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.
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.
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 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.
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's easy for some of us to forget that Lyme disease is an ongoing danger parts of the world. I used to have to keep it in mind when I lived in Tennessee, but that's one thing I don't think about much now that I'm in San Francisco. Of course, I have a lot of other problems instead, just not ticks!
When I lived in So. Cal, and even when I spent time in the Sequoia NP and NF, I never found a tick on me. I think I only found one on the entire 15 years I lived there, and I spent a lot of time bushwhacking around in those parks and the Tehachapis.
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.
It keeps expanding due to changing weather patterns. I've already had 3 ticks on me in the past couple of weeks here in eastern Ontario from as little as walking in a ditch for 30 seconds (the dangers of being in telecom). It wasn't a major concern years ago, but the rate of ticks positive with Lyme's locally has increased over the last few decades. A few family friends have had Lyme's, and it's an absolutely awful disease.
Is there an app that can alert me when I'm in a tick-infested area? I don't think about ticks living in CA and I'm deadly afraid of being on a vacation and going on a hike and getting bit.
Ticks in california don't carry lyme typically. I'd be a lot more worried if you were on Long Island or on the east coast generally.
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.
It may have changed since I lived there but that was certainly true when I did. And I spent a lot of time rambling around the mountains, creeks, and NFs and NPs there and most all of it bushwhacking off trail.
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).
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.
Anecdotally, anywhere in New Jersey, southern New York, or Connecticut. I'm not sure about prevalence further north into upstate New York or New England, but I wouldn't be surprised if it was bad there too.
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).
The tick-infested area is anywhere with moderately tall grass on the entire eastern half of the United States. I don't think a lot of people realize how bad it's gotten over the past 10-20 years.
Wear long pants and gaiters sprayed with Permethrin. Do tick checks after a hike. Try to avoid unnecessarily walking through long grass. It's not possible to guarantee you won't get a tick on you but you can mitigate a lot of the risk pretty easily. Also, while ticks carry a number of nasties generally, Lyme is specifically about the small deer ticks.
Not that I know of, but one of the best way to avoid ticks is to not brush against the end of branch or leaf tips on trails. That is where ticks like to hang out the most because that's where animals walk the most. The lesser used path in dense foilage is less likely to get you ticks than taking the well used path with overgrown edges.
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.
https://www.ticklab.org/ if you've been bitten, remove the tick carefully and send it in. Free if you're a Pennsylvania resident, might be an equivalent lab in your state. Plus plenty of stats on ticks & diseases by state.
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.
Where I live (SW Missouri Ozarks) Lyme disease isn't as common places back east but ticks and getting bit by them are, especially this time of year.
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.
Been in Springfield for a year-plus now, and had my first tick bites up in Ozark and first infection from mites at my place at the edge of town. Good times.
Have a severe autoimmune condition. Tons of weird issues. But didn’t know it.
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.
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[ 4.0 ms ] story [ 218 ms ] threadhttps://en.wikipedia.org/wiki/Tetracycline_antibiotics
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
https://www.aafp.org/pubs/afp/issues/2002/0215/p714a.html
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
I wasn't going to complain about feeling better than normal, only a little disappointed after the scrip ran out.
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
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.
It's being used to treat autism symptoms (social).
Might be a similar mechanism
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.
[1]: http://usprobioticguide.com/PBCAdultHealth.html?utm_source=a...
Guess I'll medicate myself as usual.
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. [...]"
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.
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.
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/
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.
Wait, what? Based on what reasoning? Was this before or after the Affordable Care Act?
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.
[1] https://www.southerncross.co.nz/society
[2] https://unimed.co.nz/about-unimed/
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.
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.
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).
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 )
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.
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.
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
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.
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).
https://www.cdc.gov/lyme/stats/tables.html
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
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).
You should be cautious but not "deadly afraid."
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.
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.
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.
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...
[1] https://www.patientzeropodcast.com/
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.