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.
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.
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.