Lyme Disease, the internet, and politics.

I know what you're thinking, "Dags, is this really the place for talking about Lyme disease? Diseases aren't political!"

I'm currently being treated for Lyme disease, which is my inspiration for this topic.

I'm unaware of how this affects other countries with differing healthcare systems, and I'm interested to find out how. The advent of the internet makes it very easy to organize advocacy and support groups. Sometimes this can be really good, but sometimes these groups instead promote all forms of quackery and spy-novel caliber conspiracy theories. Consider this bit about Lyme disease to be an example or case study, this certainly pops up in other forms.

So a few days ago I wound up with a bulls-eye rash, made my appointment and got some antibiotics. I live in a Lyme endemic area, and I think I was maybe five when I was first warned about the bullseye rash and brushy areas. I go to the internet to check out the side effects of my meds from other people who've had Lyme disease. I find some useful information, but there are also people posting in hysterics about how the recommended treatment is wrong, and that they've suffered with Lyme disease for X years. Eventually I come to find there's a whole network of people, some who've never been to an area where Lyme is endemic, who are convinced they have chronic Lyme disease. There are accounts of sexual transmission, and networking to find "Lyme Literate Doctors" in your area who will confirm what you've decided despite medical tests to the contrary.

Here's where it gets political: In the U.S., most insurance companies don't support the treatment protocols this people demand. It's not even that they're particularly expensive drugs (doxycycline has been generic for ages), it's just not supported by medicine and so they don't support it. So most of these "Lyme Literate Doctors" operate privately and charge exorbitant prices, some criminally so.

Here's where it gets crazy political. These Lyme advocacy groups? They're pushing legislation, and it's working. Across a number[1] of different states[2] legislation is cropping up about chronic Lyme, either to force healthcare companies to cover unstudied long term treatments, or to protect the doctors who prescribe them from being disciplined by mainstream medical organizations.

Obviously every healthcare system, and the medical community at large, aren't going to have all the answers. That means there are going to be some people who are unexplainably sick, some legitimately so, while others have some psychosomatic problem (which isn't to say they aren't sick). There are also times when good (or bad) doctors fail to make the right diagnosis.

So now we've got a group of sick people who are stuck being sick without an explanation. Not exactly comforting. People want answers, and they'll cling to the ones they get, even if they aren't from trustworthy sources.

So what do you guys think about this phenomenon? Is it just malingering? How does your country/healthcare system handle people with unexplained illnesses? Are there similar instances of advocacy groups guiding legislation?

I am a lucky son of a bitch, live in the UK, have universal healthcare and can pester my GP with all my problems for no cost, and then the prescriptions cost nothing as I'm still in education and even when out, most will be relative to earnings.

In the UK the system makes it incredibly hard for groups to peddle bullshit remedies that disguise themselves as medicine.
It doesn't stop them of course but they have to dodge around obstacles and cannot ever say "this is medicine" "this has been proven to work" etc etc. None of them can ever possibly get any legal representation due to how the British Medical Association, which is an independent body is interwoven within Government holds all medicine to a high standard on a scientific trial level. Attempts to lobby this body have been tried and failed miserably never getting a foot through the door.

What do I think about your example... oh dear... you really need some way to enshrine in law that science should be listened to in regard to medicine... if nothing else, fuck sake do it for medicine.

Cervical cancer prevention being vetoed by a state Governor, groups lobbying to protect their bullshit cures and by-pass the medical organisation who should have written them off as con-pushers by now. Well... I hope their lobbying efforts fail... because if they succeed then you thought your healthcare system isn't good now... ha...

Lyme disease is quite rare in Australia, we actually have problems with one self-professed expert in one of the capitals prescribing ridiculous regimes and tests for everyone he sees. We had a patient who had drug induced Hepatitis because of the three antibiotics they'd been given for 6 months straight (ceftriaxone, rifampicin, metronidazole).

Dags90:
-snip-

This is because we live in an age where the average person has the dangerous combination of:
- An inflated sense of entitlement
- The belief that they are a better judge of their health needs than trained professionals
- A mistrust of authority figures
- And are often thick as shit too.

Don't like what your doctor tells you? Then go to another doctor, who will give you a more favourable diagnosis and pander to your ego, for a reasonable fee!

The Fat Acceptance "community" exhibits this kind of behaviour, too - basically, it's a form of lobbying against reality. It's bizarre.

Batou667:

Dags90:
-snip-

This is because we live in an age where the average person has the dangerous combination of:
- An inflated sense of entitlement
- The belief that they are a better judge of their health needs than trained professionals
- A mistrust of authority figures
- And are often thick as shit too.

Don't like what your doctor tells you? Then go to another doctor, who will give you a more favourable diagnosis and pander to your ego, for a reasonable fee!

The Fat Acceptance "community" exhibits this kind of behaviour, too - basically, it's a form of lobbying against reality. It's bizarre.

There's absolutely nothing wrong with seeking a second opinion, the problem is that there is a massive commercial motive driving shysters and charlatans to set themselves up to con people seeking a second opinion, and nobody in politics is willing to do anything about it out of fear of losing the votes of the ignorant twats/misinformed victims who support their bugfug-insane "alternative medicine", because those politicans ARE one of aforementioned ignorant twats/misinformed victims, or because they're being paid to.

And we in the UK can't say shit on this subject, considering the status of Homeopathy in this country; endorsed by the Royal Family(as if they weren't enough of a useless bunch of inbred fuckwits), available on the NHS, and the only people taking these lunatics on are the Advertising Standards Authority.

Dags90: My wife suffers from another disease, Myalgic Encephalomyelitis (ME), which is treated dismissively by the mainstream medical community. The treatments for the disease are available only from specialists, and not covered by insurance. Having watched my wife degrade from an active, healthy, professional model/dancer to a bedridden invalid, I can assure you that the disease is 100% real, regardless of what the mainstream medical authorities say.

I believe the same is true of Chronic Lyme Disease, which I read about when we were attempting to find out what was wrong with my wife. It's a real disease with devastating consequences.

Most of you are, sadly, in the same place I was prior to my wife's illness: Engulfed in a foolish belief that medical doctors are somehow more worthy of trust than other fallible humans are. They aren't. They are not Gods, not omniscient. They no more have a mandate of 100% knowledge than any other profession, be it lawyers, computer programmers, or CEOs.

What I have learned, through painful experience in the past three years, is that systematically our medical system (by "our" I mean America and Europe) fails badly at diagnosing and treating multi-factorial chronic illnesses; that is to say, illnesses that have a relapse/remit or degenerative symptom set, without a single clear cause. Such diseases are hard to diagnose, hard to treat, hard to cure. Busy doctors with 10 minutes to see a patient and long waiting queues don't have time to do it. Medical insurance companies have no interest in recognizing such diseases, because they are incredibly costly to treat.

Do your homework and you will see that not many years ago, Multiple Sclerosis was ridiculed as a malinger's disease, in the *exact same way* that Chronic Lyme, ME, and Fibroymyalgia are today. Read Osler's Web. Read the Band Played On. Learn about what it's like to actually be caught in the system. And pray that you never get a disease like ME or Chronic Lyme. Truly. Once you get a disease that the medical community has disdain for, you are in for a lifetime of horror and misery that you cannot imagine exists.

Archon:

What I have learned, through painful experience in the past three years, is that systematically our medical system (by "our" I mean America and Europe) fails badly at diagnosing and treating multi-factorial chronic illnesses; that is to say, illnesses that have a relapse/remit or degenerative symptom set, without a single clear cause.

I'd agree here.

I know at least two people who got stuck with some form of chronic fatigue syndrome that lasted for years, and the medical community can be highly unsympathetic and unhelpful. And yes, sufferers can easily be castigated as lazy. One in particular was one of the most hard-working people I know (overworking might have been part of the problem, mind), and for her to be written off as a slacker is just insulting.

I think a certain attitude amongst medical staff can be that if they can't diagnose it, it doesn't exist.

Archon:
snip

You must have missed my rather explicit admittance that the medical community won't have all the answers all the time. There are at least about 6,000 "rare diseases" in the U.S., and more are always being described in the literature. It's impossible for any doctor to be trained in every disease, and people always will fall through the cracks. No system is perfect. Marfan Syndrome is a reasonably easy to identify genetic disorder which, if untreated, can cause fatal aortic aneurysm by age 40. However, only an estimated half of the 60,000 people in the U.S. are thought to be diagnosed, often with fatal consequence.

Suggesting that doctors are on the same level as the general public? That goes too far. Way too far. It's hardly foolish to consider doctors more trustworthy than everyone else when it comes to medicine. Engineers are fallible too, but if you ask me to fly in either a plane designed by an appropriately trained engineer or sail a boat made by a farmer, I'm going on the plane.

There's a real danger to diagnosing people with something like Chronic Lyme which has nonspecific symptoms, because it stops meaningful investigation into other possible causes. I know a few people with a Fibromyalgia, and one person who was diagnosed with Fibro and actually had MS.

Dags90:
You must have missed my rather explicit admittance that the medical community won't have all the answers all the time. There are at least about 6,000 "rare diseases" in the U.S., and more are always being described in the literature. It's impossible for any doctor to be trained in every disease, and people always will fall through the cracks. No system is perfect. Marfan Syndrome is a reasonably easy to identify genetic disorder which, if untreated, can cause fatal aortic aneurysm by age 40. However, only an estimated half of the 60,000 people in the U.S. are thought to be diagnosed, often with fatal consequence.

I fear I did miss your explicit admittance, so my apologies. Your tone suggested to me that you had a higher level of trust in our medical system than I feel is warranted from my experience with the system.

I disagree that the issue is whether a disease is rare. The issue is whether a disease is hard to diagnose. Some diseases are rare, but easy to diagnose. Flesh-eating bacteria comes to mind. Others are more common, but hard to diagnose. Fibromyalgia comes to mind.

I don't think its arguable that a disease which has multi-system symptoms, a multi-factorial cause, and a chronic relapsing remitting state is harder to diagnose. Do you?

Suggesting that doctors are on the same level as the general public? That goes too far. Way too far. It's hardly foolish to consider doctors more trustworthy than everyone else when it comes to medicine. Engineers are fallible too, but if you ask me to fly in either a plane designed by an appropriately trained engineer or sail a boat made by a farmer, I'm going on the plane.

I fear we are talking past each other, as I said "They no more have a mandate of 100% knowledge than any other profession, be it lawyers, computer programmers, or CEOs." I thought it was clear that I was saying I trust doctors as much as I trust other professionals. Which is to say: I trust them, but I verify and I get second opinions and I am wary of systematic bias.

In computer engineers, one such systematic bias is in release dates and man-hour estimates. Computer engineers famously underestimate the cost and time required to complete software projects. Despite the fact that everyone knows this and tries to account for it, it still happens. Why it happens is arguable, but "it is known" that you can't take a software development release schedule as a given.

With doctors, one systematic bias is that they miss multi-factorial chronic illnesses when they diagnose. So I'm saying that if you have such an illness, you need to be wary of your doctor's diagnosis (or non-diagnosis). And if you don't have such an illness, you should give the benefit of doubt to those who claim they do, even if they're having trouble getting diagnoses, and not assume they are malingerers.

There's a real danger to diagnosing people with something like Chronic Lyme which has nonspecific symptoms, because it stops meaningful investigation into other possible causes. I know a few people with a Fibromyalgia, and one person who was diagnosed with Fibro and actually had MS.

In the cases I'm aware of, the diagnose of the "something like" disease is almost always a diagnosis of last resort. In the case of my wife, she was tested for lupus, scleroderma, lymphoma, rheumatoid arthritis, MS, mixed connective tissue disorder, and Lyme before they concluded it was ME.

There are certainly a few malingerers who actively seek out fraudulent diagnoses; and there are certainly some people who actively try to get the "something like" diagnosis for whatever reason; but the vast majority of people I've encountered are very sick people who have seen every specialist under the sun, over a period of many years.

In any event, I wish you luck with your Lyme disease treatment.

In regards to Post/Chronic Lyme Disease it is not like doctors don't support the treatments people want without reason. While the actual cause has not been pinned down, it has been proven that continued treatment simply does not work, in fact long term antibiotic use can be dangerous.

Unlike some people I don't think a majority of doctors ignore patients (there will always be dodgy people in any field) with chronic complaints. The problem is that sometimes the cause can be hard to pinpoint, especially when you have a patient who have made up their mind on what they have. In these cases the patient can exaggerate the symptoms that fit what they say they have and neglect other symptoms. Even if the patient is 100% honest it can still be hard to pinpoint the cause. Many autoimmune diseases for example have similar symptoms and it really is just a matter of ruling them out one by one.

Many diseases that result in chronic illness do not have cures, we can only treat symptoms. Not everyone gets the same symptoms and they are not always to the same degree. For this reason patients need a personalized treatment. Often this involves trial and error with different drugs, finding what works and what does not. This is where you have problems in the US.

In the US insurance is based on not treating people, it is how they make a profit. If a doctor cannot say exactly what you have and exactly what drugs you need, the insurance companies will not pay for it. This is not how it works in the rest of the developed world as even if you have private insurance that won't pay you have UHC coverage to fall back on. Doctors are able to develop specialized treatments for patients because they know the patient can pay for it.

Batou667:

This is because we live in an age where the average person has the dangerous combination of:
- An inflated sense of entitlement

Yeah, god forbid someone expects their insurance company to cover medications for illnesses, like it was their job or something. Entitlement indeed! How dare I expect them to provide the service I pay them for?

 

Reply to Thread

This thread is locked