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A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

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Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#101

Post by russiasux »

darkerside wrote: post #54
russiasux wrote: post #40

Earlier quoted context omitted.

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 eno…

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).

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#102

Post by phaedrus441 »

russiasux wrote: post #100
PragmaticPulp wrote: post #94

Earlier quoted context omitted.

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 ver…

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 c…

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

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#103

Post by bcrl »

bicx wrote: post #27

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!

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.

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#104

Post by cm2012 »

elif wrote: post #95
russiasux wrote: post #40

Earlier quoted context omitted.

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 eno…

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.

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#105

Post by Auracle »

Alex3917 wrote: post #39
Melatonic wrote: post #33

Earlier quoted context omitted.

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 t…

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.

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#106

Post by librarianscott »

nerdponx wrote: post #38
erisinger wrote: post #24

Earlier quoted context omitted.

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.

[1]: http://usprobioticguide.com/PBCAdultHealth.html?utm_source=a...

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#107

Post by rzz3 »

radicaldreamer wrote: post #30
xmonkee wrote: post #29

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.

This is categorically false.

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#108

Post by yial »

russiasux wrote: post #99
happyopossum wrote: post #89

Earlier quoted context omitted.

> 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 hav…

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 )

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#109

Post by sterlind »

elif wrote: post #95
russiasux wrote: post #40

Earlier quoted context omitted.

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 eno…

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.

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.

Re: A single prophylactic 200mg dose of Doxycyline prevents Lyme disease

#110

Post by robocat »

drc500free wrote: post #88
Wowfunhappy wrote: post #53

Earlier quoted context omitted.

> 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?

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…

> 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/

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