I have a friend who has been a many-year sufferer and is now an advocate. Admittedly, I haven't paid the full attention I might have; nonetheless, some knowledge and reporting has seeped in.

Understand that doctors have been disbarred and prosecuted for pursuing Lyme treatments that go "off protocol", even when the patient is clearly still sick and when they are carefully pursuing the best understanding and treatment they can obtain.

Insurance companies refuse to pay for treatment, and "mainstream" medical practitioners with little or limited understanding refuse to pursue further treatment. For example, testing for Lyme infection is tricky, unreliable, and multi-stage. However, a doctor will administer one test in the initial stage. When it comes back negative, they declare "Well, you can't have Lyme disease." While in reality such a negative result is far from conclusive.

Good luck, then or at all, getting your insurance company to pay for further treatment. And, most of us have insurance because we don't have enormous liquid reserves to pursue such things independently.

In other cases, a diagnosis is made and a single course of treatment pursued. The doctor considers one such course of treatment to be 100% effective. For patients who continue to have symptoms -- and it's now well-known that Lyme presents chronic cases that are highly resistant to treatment -- they are told that, following such a treatment, "it can't be Lyme disease."

Some recent reporting I heard had an expert estimate that with the U.S. government (i.e. the CDC et al.) finally considering a re-interpretation of their identification of Lyme disease, the number of cases formally identified may increase ten-fold.

So... there really is something to wishing that the government would take this disease more seriously.

And... I wish more medical professionals would drop the "absence of evidence is evidence of absence" fallacy. So often, "certainty" proves over the long term to be anything but, in the field. Remember when they were telling us to switch to (partially hydrogenated) margarine? Or to forgo all fat? Sodium? Coffee?...

The problem is you've got patients who have run out of options. Maybe they've got some complicated autoimmune disorder that medicine hasn't even begun to understand. Maybe the patient is just getting older. But the mainstream physicians don't have acceptable solutions or sometimes even good answers. "Lyme literate" medicine practitioners then offer an explanation and a possible treatment, regardless of whether or not the patient actually has Lyme disease. There's even a lab that will do a four month long blood culture + PCR for borrelia to give that official positive diagnosis when the immunoblot comes back inconclusive, despite the incredible false positive rate with the culture.

For those who aren't looking to use the Lyme hammer to explain and treat everything that can't be explained by conventional diagnosis, Lyme disease is well understood. The standard antibiotic therapy is very effective at stopping the infection. If treatment is delayed too long, there are lingering symptoms that are difficult to treat. There is no evidence that IV antibiotic therapy for years at a time provides any benefit and much evidence that it harms patients. People haven't lost their medical licenses for prescribing such therapy because of some great conspiracy. People have lost their licenses for administering treatments that clearly harm their patients without any benefit while charging large amounts of money for it. It's quackery.

Thanks for that further qualification.

I think that, via my friend's commentary and links and whatnot, I've encountered a fair amount of:

If treatment is delayed too long, there are lingering symptoms that are difficult to treat.

Nonetheless, the experiences do seem to present a nightmare that includes fighting incorrect diagnosis and lack of support, including from insurance.

I didn't read the full OP article, but I heard a fair fraction of the same subject's interview on "The People's Pharmacy", this past weekend. He is a doctor, and still he went through years of misdiagnosis and chronic, horrible symptoms.

I'm also mindful that while people including the medical community are now becoming more cognizant of Lyme disease and its details, for years this was not the case.

Finally, I guess we should note that, between this article, the interview I mention, the book he's written... this also represents a PR push surrounding the book.

P.S. I guess I can add that I have a family member who acquired a parasitic infection (not Lyme disease) abroad that was not properly diagnosed and treated for 3+ years. (Despite extensive attempt to find an effective diagnosis and treatment including some very prominent clinics.)

The correct treatment, once administered, immediately knocked out the parasite. However, so much damage had been done by it in the meantime that recovery proved to be very long and ultimately incomplete.

This anecdote doesn't make me any righter about Lyme disease, and certainly IANAD. But I have, second hand, experienced something similar with regard to such... "runaround".

> "absence of evidence is evidence of absence" fallacy

It's not a fallacy. Absence of evidence really is evidence of absence. The fallacy version is "absence of proof is proof of absence".

Thanks. That is better wording for what I meant.

We have public health care system in my country. Hearth surgery is practically free, but Lyme disease is 'non existent', for similar reasons you described. Hard to diagnose, easy to swap under rags as 'flu'...

I can vouch for this. A friend's doctor lost their license for helping his wife with an off protocol treatment (that worked!) and subsequently all of her symptoms returned.

It is a sad state of affairs when doctor's are restricted from making medical decisions in the best judgement of their patients because of uninvolved bureaucracy.

Well, public health would seem to be pretty much the textbook definition of a governmental function even if you generally favor less government rather than more. As a resident of a high Lyme disease-incidence state who does a lot of outdoors activities, I find it annoying (though that's not really the right word) that we know how to make Lyme vaccines, and in fact give them to dogs, but there seems little urgency in providing them to humans. The previously approved vaccine (Lymerix) was admittedly not the most effective and possibly had some incidence of (never statistically linked) side effects. However, given the rapid increase of Lyme cases in certain areas, this seems like a case where the government could fairly easily make a vaccine available for what is clearly a public health problem.

I'm all for government funding lots of research for health, science, etc. My desire is for people to also figure out ways to also contribute in other ways to have more citizen sponsored research, for example. We have Kickstarter projects that need $2 million to be funded.

https://www.kickstarter.com/projects/ysnet/shenmue-3

How about a way for people to sponsor medical research or basic science in an effective manner? A lot of money that goes into some charities is used for marketing to grow even bigger.

You are trolling, correct? Someone says that the government should fund research into Lyme disease, and you post a link to an RPG on Kickstarter?

How about a way for people to sponsor medical research or basic science in an effective manner?

Because people have _no idea_ what to sponsor, and really, nor can we expect every individual to do the level of research required to make sure their money is invested properly. People have jobs and lives. It's much better for us to collectively invest in a single pot, and give a body (say, a government) the ability to appoint someone whose job it is to effectively invest it.

Nah, I just have a bit more vision. People in the U.S. gave $358 billion in 2015.

https://philanthropy.com/interactives/giving-usa-2015

Your opinion is the status quo. Hopefully, someone less narrow minded will come along.

We already have vaccines that work for humans. They were retracted in the 90s because of public outcry that the vaccines "cause arthritis" in much the way that people today outcry that vaccines "cause autism".

“Lyme disease is the only infection I know of where we have a safe and effective vaccine, but it’s not available to the public,” says Dr. Allen Steere, the physician who uncovered the disease.

http://www.wbur.org/2012/06/27/lyme-vaccine

>because of public outcry that the vaccines "cause arthritis"

Well, that specific vaccine.

However, to your basic point, even though the specific vaccine in question (LYMErix) was "only" about 80% effective, the federal government should make it available through some mechanism for adults today given the increasing incidence of Lyme disease. (And should add it to the vaccines covered by liability protection.)

Unfortunately, there's no "herd-immunity" externalized benefit, so the efficient way to allocate it is by individuals buying doses for themselves. (Well, for Homo economicus, rather than Homo sapiens.)

I'm fine with buying it (for a semi-reasonable price, i.e. not $10K) but no one makes an FDA-approved version and it's not clear how active the efforts are to get a LYMErix replacement approved. (There have been early-stage clinical trials but there don't seem to be aggressive efforts to move forward.) Presumably the canine versions would be safe enough but you can't just buy those on the open market and administer them.

Well, there are all the charities related to various diseases so arguably what you're asking for already exists--and is tax deductible to boot. As you suggest, some of these spend a large proportion of their budgets soliciting donations. But those numbers are publicly available. I'm not sure why/how raising funds through a kickstarter would be a fundamentally different dynamic. It still wouldn't really work for individual researchers to use crowdsourcing for a variety of reasons, including the fact that potential funders are really not in the position to judge whether a proposal makes sense or not.

I didn't say start a Kickstarter. That was used as an example of how crowd funding is used to raise a lot of money. Anyway, it was only meant to start the conversation.

You weren't suppose to tell me what was wrong with my straw man but offer a solution that's much better.

Anyway, we aren't going to change the world today so let's end this and just wait until the Elon Musk of medical research appears.

> A lot of money that goes into some charities is used for marketing to grow even bigger.

From 7% to 20% of their budget. They are enterprises making no profit but they try to secure themselves.

> Things can work much quicker and more efficiently when people with a little passion work on difficult problems.

Like NIH researchers?