Why DIY fecal transplants are a thing
blogs.plos.org
blogs.plos.org
As usual, you need to evaluate your doctors' incentives. Do they make more money from
1. Cutting your wife open, with all the associated hospital care or
2. Fecal transplant, for which their competition is free DIY?
As Upton Sinclair said a long time ago: It is difficult to get a man to understand something, when his salary depends upon his not understanding it.
Edit: BTW, I wish you luck with your situation. I gained familiarity because my wife had recurrent c-diff. During this episode, I saw such non-scientific quack-like behavior that I pretty much lost faith in most of the modern Medical Industrial Complex. And this was for a bacterial infection, for which the literature is accessible to anyone with a high-degree of education and a decent biology background.
The takeaway lessons from our episode was: Take matters into your own hands as much as possible. You have 24 hours a day to work on your problems, the doctor has about 20 minutes. So if you're not an expert on your particular situation, then you're pretty well screwed.
Your programmer's incentive is to do a half-assed job, so you are more reliant on them for bug fixes and so on. Therefore, no programmer is going to be trying to do a good job or take pride in their work. Everyone is 100% motivated by financial gain.
His doctor may indeed suck, but he should get a new doctor, not write it off as the whole system being stacked against him.
That's usually why it is best to apply reasoning sensibly. For instance: Your programming example is missing the traditional loans from the cost-of-medical school. It is also missing the middle-man problem of insurance billing. It is also missing the incestuous role that pharmaceutical companies play in "helping" doctors to learn how to diagnose little-understood diseases such as UC.
It is better to apply the line of reasoning I gave above to situations where they apply.
There are always going to be some people motivated by money (like perhaps yourself), some by helping others, some by some other measure of personal satisfaction.
To say all physicians work on the incentive of personal money is a paranoid view which, in my experience, is grossly simplistic. There are good doctors, and there are bad doctors. It's equally (in)valid to say that everything anyone does in any profession is entirely motivated by financial gain.
I would question their background even more. Think about how they were trained, and think about what are likely to be considered "best practices" in the medical field. Doctors tend to err on the side of caution (and usually with good reason). From that viewpoint, it's not surprising that something relatively new and seemingly radical is not likely to be recommended.
'Biome rotation'?
'Intestinal re-endowment'?
Incidentally, this is one of the many benefits of services like the NHS. Our doctors aren't thinking about their profit margins!
My wife was nearly killed twice this year by NHS bean counting:
Firstly they missed a strangulated hernia because they wanted to cut back on x-ray usage in A&E. Then after five visits to A&E and threats of being sued, they did one and booked surgery on the "oh shit" moment the consultant noticed it. She was dragged in each time paralysed with pain in an ambulance, which took at least an hour to arrive each time.
Secondly, after the surgery, they left her without any post-op checks for 17 hours due to staff shortages leading to a collapsed lingular, pneumonia and a massive internal bleed which took additional surgery.
My wife now requires full time care as her immune system has collapsed from the repeated infections and started attacking her body which has pretty much fucked me as the NHS won't foot the bill so I have to work full time at home dangling off an RDP connection (thankfully I write software rather than fix cars or something) and look after her.
This is also problematic as I have a disabled daughter who requires full time care, who incidentally receives precisely fuck all care of any significance.
And they cut our child benefit because I earn too much but I have to pay a huge rent to keep a job that pays enough to live on in London which leaves me -£100 every month.
Fortunately I found a solicitor to work for free on this case.
The NHS is a disaster as is the rest of this country. They are thinking of their budget which is worse than their profit margins.
To hell with it.
Edit: There is a lot of completely un-objective, unrealistic propaganda about the NHS all over the television from documentaries to reality shows (24 hours in A&E for an example). This is all completely detached from reality.
For what it's worth, how would you make things better?
How would I make things better?
Unfortunately the government seem to think that capitalism can be a host to socialism (i.e. the UK can host the NHS as a socialist concept). This plainly doesn't work as the last few years in particular have proven and ends up creating a dumping ground for the elite, the unionised masses and the worst of all: the incompetent.
The solution is pick capitalism or socialism and all their associated ills, then eliminate the elite, the unions and the incompetent universally.
A secondary problem is that this country is entirely skill-less and the population is growing rapidly. The skilled public workforce isn't growing at all with this.
Can we fix this? Probably not.
That sounds like a terrible solution. I'd much rather try to balance bits of capitalism and socialism as necessary. Yes, it's hard, yes, we'll get things wrong, no, that doesn't mean it's not worth trying. 'Be wary of simple answers to complex problems'.
When I was 13 I had a stomache ache, my mother being overly paranoid took me to the hospital after a few hours of it not getting any better. After about an hours wait I saw 3 or 4 doctors in quick succession, was diagnosed with appendicitis and had surgery scheduled for around 7 hours later. I was taken care of excellently and wasn't charged a penny.
Anecdotally, almost everyone I know has only had positive experiences with the NHS. Of course it isn't perfect, but it sure as hell isn't a disaster.
That doesn't excuse one case of gross incompetence though.
And incompetence is rife: http://en.wikipedia.org/wiki/Stafford_Hospital_scandal
The NHS has its problems, as does private health care. However, I would argue that the problems which the NHS has are almost all directly related to chronic under-funding.
Case in point: my girlfriend's grandfather recently had a stint in hospital. They discharged him, and then 2 days later he was sent back in with a different problem. He was put on a ward directly below the ward he had been on just 3 days earlier. The nurses on this ward had no idea that he had just been in hospital, no idea about his medication, and no idea about the treatment he had received.
The problem here is that due to budget cuts and under-funding, the NHS cannot invest in any kind of consistent or worth-while patient tracking and monitoring system. Everything is on paper in crusty filing cabinets, and what little technology they do have is already outdated and unnecessarily cumbersome.
The NHS is failing because populist politics have crippled it in essentially every single way that matters.
Anecdotal evidence doesn't change that. And you were charged more than a penny in additional taxes. Government services are not a Free Lunch. The money has to come from somewhere and does.
Oh and 10%
[citation needed]
You pay for both systems. One kills you because you can't afford it and the other kills you because they can't afford to keep you alive.
I can find this: America's Healthcare System is the Third Leading Cause of Death http://www.health-care-reform.net/causedeath.htm
While I have had nothing but great experiences with A&E in London over repeated visits (ex wife had several problems that resulted in ambulance visits, as well as managed to hurt her arm badly) as well as ambulance wait times, there are certainly differences between boroughs, both in funding but more importantly in policies.
If you find one A&E is not providing what you want, and ambulance times like that: Drive to another hospital. They are legally obliged to admit you at A&E (just don't tell them you on purpose drove there - it can't stop them admitting you, but it will make some consultants assy). Chelsea and Westminster is a good choice.
Outside rush hour, if you had ambulance waits of an hour you can likely have reached any number of hospitals unless you're far outside the centre.
In terms of budgets, we get what we are willing to pay for, unfortunately. As it is, our healthcare costs us half of what the extremely limited public healthcare funding in the US costs US tax payers (per capita), and for that we get universal coverage. Clearly we could pay more. We don't, because most people are satisfied with what the NHS provides - something we also see in the low takeup of supplemental private health insurance in this country.
If you can never get a GP appointment then maybe try switching GP's?
It was particularly difficult a few years ago when recurrent c diff was relatively unknown. At that point, I had to find a compounding pharmacy to get the oral vanco.
When things would recur, docs who clearly did not know what to do next would recommend doing the same thing and surprise! they'd get the same recurrence when done. Idiots.
Finally, I ended digging into the literature in order to make sure that whatever infectious disease doctor we were talking to was up-to-speed. There are few who are. I worked out some population dynamics on my own, but most of the medical community is not diffeq friendly.
As the wife dropped to under a hundred pounds, we found someone who recommended Cholestyramine during the post-vanco phase. It turns out that Cholestyramine binds one of the toxins (B? iirc) which gives the rest of the intestinal flora a fighting chance as the spores germinate. Effectively, it reduces the coupling coefficient in a population dynamical system preventing the c diff population to grow and overcome other populations. Perhaps old news if you did work in this field. At least, I hope things like this are better known than back in 2005.
Anyway, it worked but her health has never been the same.
There's some new drugs - evidence for example that Fidaxomicin may work better than Vanco, and increasing use of fecal transplant and other techniques.
My dissertation was on the effect of routine fecal transplant in post-CDI patients to prevent recurrence, using some models based on diffeq transmission models (but stochastic rather than deterministic).
http://www.radiolab.org/blogs/radiolab-blog/2013/jan/15/bitt...
C diff infections (for which fecal transplants apparently look extremely promising), cause extended hospitalization, eating into the DRG, and therefore, reducing overall reimbursements.
So fecal transplants aren't as disadvantaged as you might think.
With this whole incentives thing - the incentives of the insurance company (to pay as little as possible) do play a role in all of this.
That sounds reasonable enough.
It sounds like you are doing a good job bringing this up and questioning why your doctors are choosing certain therapies for your wife. There's more and more data coming out on using fecal transplants in Ulceratic Colitis (UC) patients and for the most part it seems well tolerated (there is one case report I just saw of someone getting a fecal transplant for c diff and then having a flare of their UC after it was in remission for 30 years).
Keep pushing and when they say no ask them why they don't think this is appropriate to try rather than the risks of surgery. It sounds like you've already done research online about this and are well informed. If her doctors aren't open to trying this (or can't because their hospital doesn't have experience doing this) I'm sure they would be able to refer you guys to someplace that would try it. Of course, there's the whole insurance issues of covering this (new and still experimental) which I won't get into but maybe there is a research study you can join.
Obviously not the sort of thing many people would want to consider before the intestine-removal stage, but at that point it might be worth looking into.
The FDA approval process usually costs about $150 million, and there is no way to recoup it for anything not patentable. Hence research in this area died because it is not getting through the FDA process.
How many other cheap treatments are not available for the same reason?
It seems like the only downside is worrying about the worms reproducing. If you could make them sterile before applying them, and then just take new ones every month or so.
I'm keeping an eye out for the trial results. If it works, it would greatly expand our understanding of immune diseases.
http://biotechtranslated.com/2011/07/30/the-hygiene-hypothes...
People who deliberately want to maintain an infection need to actually poop onto some soil, then come back later and walk on it.
Wikipedia has a nice article describing the process. (https://en.wikipedia.org/wiki/Fecal_bacteriotherapy)
It must be very frustrating for you. Good luck.
I find the ick factor thing absurd. Again, Which is more likely?
1. An MD, who has been through anatomy lab which cuts off every part of the human body (ever cut off someone's face? Turns out that it is fascinating...), working long hours smelling formaldehyde over a dead body, and realizes that it's been a long time since the last meal so would like to step out for a bite to eat, thinks a fecal transplant is icky or
2. S/He won't make money.
I'm gonna go with Occam on this one.
Is he allowed to, either by law or his malpractice insurance?
I've talked to a number of doctors who do it, and while "It's hard to bill insurance for something like this" comes up, much more common issues are the patients being like "You want to do what?", that there's no real standard delivery mechanism, and that it's fairly lab intensive.
Once you become a parent, poop becomes Just Another Thing. :)
Here's an article from Nature that shows mice can become more easily obese if you infect them with some, er, stuff, and that this is transmissible (http://www.nature.com/nature/journal/v444/n7122/abs/nature05...)
So you could be giving yourself stuff that would make it easier for you to become obese, or you could be giving yourself stuff that would make it easier for you to stay not-obese.
And that's just these few bugs. There are a whole range of really quite unpleasant things you could be getting.
Regulations are important. They're not to protect well informed people from making calm rational choices, although they do have that unfortunate effect sometimes. Regulations are to prevent cynical, or stupid, people from offering dangerous untested unproven "treatments" at great cost to desperate and ill people.
It'd be great if there was a safe way to decouple these, allowing people to gamble with their own health if that's what they want to do, but protecting people from evil con-merchants.
That's the rationale for the regulations, but it's not why we have them. The laws we have didn't get passed because the public demanded protection. They got passed because industry groups pushed hard for them, as a way to lock out potential competitors.
A system actually designed to prevent harm would look quite different.
Preventing the use of a good treatment (type I statistical error) is just as bad as allowing a bad treatment (type II statistical error). A balanced regulatory regime would make both kinds of errors with about equal probability. Our current system is so heavily biased toward preventing type II errors that we accept a vast number of type I errors.
>This is why I am very hesitant to offer ANY specific prescriptions for what to do about your gut biome. The advice to eat dirty vegetables or even start walking around barefoot in the dirt or drinking pond water or whatever "natural" activity you can think of is VERY DANGEROUS.
>The reason is not all parasites are "old friends", only some of the ones that are commensals that we co-evolved with. Getting toxoplasmosis from a cat, or a zoonotic helminth from dog shit or a dead raccoon or a pig tapeworm will do your immune system no favors and could even kill you.
>DO NOT PLAY AROUND WITH THIS CONCEPT UNLESS YOU ARE ABSOLUTELY CERTAIN WHAT YOU ARE DOING.
http://huntgatherlove.com/node/693#comment-476489235
The rest of his comments (click his name) are all similarly interesting.
If you're curious, the guy used to run a blog about paleo, although as time went on he started to hate that label and the movement in general (I imagine a lot of that comment thread is hard to understand without some context into the community around that time). Anyway, he hasn't posted anything in over a year. http://www.archevore.com/
| walking around barefoot in the dirt [...] is
| VERY DANGEROUS
Hookworms directly or some other worms via eggs into small cuts.
People who are deliberately trying to get infected as a treatment for their Crohn's or arthritis have literally resorted to travelling to the third world.
Until such a mystical system of rights can be invented, we're just going to have to keep forcing people to die and suffer from disease. Such a conundrum! It seems to be a problem that no HN threads have a solution for.
People are fucking idiots and need to be protected from themselves.
Don't you see the imbalance between a person dying of cancer, who may be easily persuaded to spend all their money on junk, and a multinational multi-billion dollar industry, which has been shown to hide adverse results, to manipulate research, to sell minimally effective medication for huge amounts of money, and to bribe doctors?
You can see this everywhere. I know some otherwise smart people that keep falling for homeopathy, anti-vaccination or weird MLM schemes. It is partially understandable - you can't be an expert in everything, you need to rely on trust in things you don't understand well. But in general, the level of rationality in people is quite low.
Sure, freedom and all. But then let's figure out how to get rid of the parasites who abuse human stupidity. How to kill homeopathy, how to shut down "financial consulting" MLM-cults, etc. because obviously, most people can not protect themselves from them.
The only flaw there is the people doing the protecting tend to be ... well, you get the idea.
http://www.badscience.net/category/big-pharma/ http://www.amazon.co.uk/Bad-Pharma-companies-mislead-patient...
There are serious issues with the current models used by Corporations <> Science, and I'd expected HN to be a little more rational.
Bottom line: if $ is at stake, of course "rational actors" will fudge their lines to prevent losses. It's not rocket science.
Now - I've included a couple of decent links, to extremely well researched and honest analysis. If I get down-voted, I feel that HN has lost the spirit that drove most early coders.
A =! A is not an objectivist philosophy, it's Logic, and what code is based upon. Ideology can go take a flying leap, this is Science.
The benefits of regulation means that when we discover that behaviour we punish those companies, and warn other companies to stop doing it.
It is sub-optimal, but much preferable to freedom of access to any snake-oil sales-people.
Don't horde information, share it with everybody in the most accessible way. Let experts from all sorts validate and approve the information. Volunteers or Companies, need to be differentiated. Transparent IDs are neccessary for participants, but anonymous contributions should also be allowed.
Wikipedia is just the beginning of that idea, but it's not working until you people share your knowledge instead of keeping it locked for your own profit.
"Some of My Best Friends Are Germs"
http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-...
It will likely be a while still until we understand the microbiome as the current sequencing methods only can sequence about ~1000 nucleotides at a time [2]. The strategy is to shred all the DNA into smaller pieces, sequence them and then try to assemble them back into the full genome. This is difficult to do in just single organisms and becomes very difficult when you're dealing with a soup of many different organisms in something like your gut. Hopefully we can make some good progress associating smaller chunks of sequence with phenotypes until we can sequence full chromosome lengths of dna.
[1] http://www.economist.com/node/21560523 [2] http://en.wikipedia.org/wiki/DNA_sequencing
Throwing the doors open isn't going to give you very good data. So we wouldn't be gaining anything we could rely on for study. We'd just be enabling DIY-ers to get (for-profit) professional assistance. Which is its own cause for concern.
These trials can certainly be better constructed, or made larger or more inclusive in such circumstances (many people facing very major surgeries that might be unnecessary should this approach pan out for their particular affliction; and shockingly-high success rates in early trials).
But I don't think there's a better alternative; most of the proposals would just open the doors to all sorts of chicanery that we've spent generations weeding out of the health care industry.
[1] It's taken us this long to figure out the importance of gut flora in the first place. And we still have little-to-no idea how it works. So how in the world could someone feel objectively confident they know what is or is not a 'safe' treatment for it? Particularly when you consider the research that this flora impacts brain function as well. A transplant might treat a gut affliction but inflict an equally (or more) serious mood disorder.
1) Is this actually safe to click on in a public place?
2) What the heck is 'fecal transplant'?
3) Clicked it - oh my goodness, that's gross
4) Read it - wow, this is actually real, and it's amazing
5) Who thought of this, and who tried it first?
6) I'm never going to get a story on the front page of HN, if this is what I have to contend with...
I have both Crohn's and UC and am running out of options and would really like to explore options for a fecal transplant. My doctor only does FT on patients who have C. Diff but not any others.
))<>((
http://www.nature.com/ajg/journal/v104/n2/abs/ajg2008118a.ht... http://www.nature.com/ajg/journal/v100/n7/abs/ajg2005272a.ht...
May only help for the more mild cases, but I know a number of people who speak very highly of probiotics for various digestive tract issues.
It is magnitudes more powerful than anything else you will find. Taking it stopped my flare and anytime I feel a flare coming on I take it. I had to push my DR into getting the script after fistfulls of Asacol HD and prednisone a day only slowed my flare down.
That may also solve one of the big burdens behind using fecal transplant as a common technique - while the procedure itself isn't too expensive (though its not trivial, getting microbes past your stomach acid in quantity is no small thing), testing donor stool is, because of the amount of things we could accidentally give you. Synthetic donor culture would have less of a problem with that.
http://www.newyorker.com/reporting/2012/10/22/121022fa_fact_...
Which illnesses does it cure?