Radical approaches in healing - your experience wanted.
August 28, 2015 2:22 PM   Subscribe

Imagine, if you will, that you have a vexing, life-altering, deeply troubling health chronic problem. It's not degenerative, it's not fatal, it's just f*cking up the most important part of your life. You are on a quest to heal, convinced that you cannot have the life you want until you get the problem under control.

Imagine, also, that you're a highly resourceful person who has been through a long list of healers and modalities, from the everyday M.D. to Helminthic Therapy Fecal Microbiota Transplants, TCM (Traditional Chinese Medicine), Chi-gong, Osteopathy, on and on. You don't give up easily, and you find the prospect of knocking this condition down far more appealing than most other things you can do with your time or money.

[The condition in question is IBS (Irritable Bowel Syndrome), though it's a diagnosis of exclusion, and pretty useless at indicating treatment.]

So what else is there? We know that many alternative/fringe/new age therapies simply don't work. But sometimes they do. Ahead of all the double-blind studies and solid scientific confirmation, sometimes they do.

Chiropractic Neurology? Ayahuasca or Ibogaine? Macrophage Therapy? Tropical medicine?
What kind of radical things have people tried for conditions where Western medicine has pretty much given up?
I'm going to quote another metafilter user at length so you can see what I'm going for:
Here's the thing with Google:

In every profession, every area of life, 99 percent of the people in it are good enough to be usually adequate. They can get your car running or your tub to drain or fix your toothache or get your cat to stop throwing up, as long as the problem isn't severe or unusual.

Those are the people you can find using Google, and I've already been to see them. I've spent decades going to see them.

They can't help me.

I need the other one percent. But who they are is a secret you can only find out via a direct recommendation by someone who's been to see them.

posted by falcon42 to Health & Fitness (14 answers total) 9 users marked this as a favorite
The person I'd see for that would be a dietitian, who could guide me through a FODMAP elimination diet. (Have you already tried that?)

(Sorry if you're really just asking about unusual healing journeys. Mine have all been prosaic :/)
posted by cotton dress sock at 2:30 PM on August 28, 2015 [2 favorites]

Yasmina Ykelenstam's story.
posted by jillithd at 2:46 PM on August 28, 2015 [1 favorite]

You don't include this in your list, so I'm going to mention it: Read Heal Pelvic Pain by Amy Stein and find a physical therapist who specializes in the treatment of pelvic pain (there are a lot more around than one would expect).
posted by Brody's chum at 2:51 PM on August 28, 2015

Imagine, if you will, that you have a vexing, life-altering, deeply troubling health chronic problem. It's not degenerative, it's not fatal, it's just f*cking up the most important part of your life. You are on a quest to heal, convinced that you cannot have the life you want until you get the problem under control.

I do not have to imagine this at all. This is the last 15 years of my life in a nutshell, except that my condition is also fatal.

I spent a lot of years on a Yahoo Group called Autism-Mercury. They are antivaxxers and if you are really judgy about "woo" medicine, it might not be your cup of tea. Some members have PHDs and are published authors and know some very useful info. In addition to searching the public archives for IBS, you should look for the term "leaky gut." That is the standard terminology used there.

IBS is similar to though less extreme than the gut issues my condition causes. I healed my gut with (mostly) a combination of Celtic Sea Salt, glyconutrients/healthy carbs, and the right oils, including but not limited to organic butter and MCT oils like coconut oil. You can google it: MCT oils are known to be good for the gut and historically were prescribed for people with serious gut issues. They are one of the more medically accepted alternative treatments for my condition, but didn't do enough for me until I combined them with the right salt and carbs. It took years to heal. Along the way, I had lots of diarrhea. This is not a quick fix, but I did see immediate improvements, which is why I stuck with it.

I started a food blog in June. You can memail me if you want the link.

If you also have chronic respiratory problems, you might ask your doctor for a sweat chloride test. That was the test that finally got me a proper diagnosis, after years of being treated like a hypochondriac.

Best of luck.
posted by Michele in California at 2:57 PM on August 28, 2015 [2 favorites]

Whole30/Paleo diet. It fixed my GERD/IBS problems.
posted by easter queen at 3:00 PM on August 28, 2015

Well, since you are looking for everything or anything, the concept of "neuroplasticity" is one of the latest buzzwords associated with these diagnosis-by-elimination disorders like IBS or CFS. I will not advocate for or recommend any specific program, or even say that anyone has "cured" their IBS with neural retraining. I was first exposed to the concept through the experiences of dog trainer Sharon Waschler - her FAQ with tons of resources is here. Her quality of life has improved by an almost miraculous amount and she credits that to neuroplasticity training.
posted by muddgirl at 3:11 PM on August 28, 2015 [1 favorite]

I am 54 years old and I have been interested in alternative health since I was in kindergarten. I've met a zillion practitioners but in every case in my life for every health problem in my life, and I have had MANY, the solution has ALWAYS been change of diet.

Yes stress can cause health problems but if you have a good diet you can withstand stress.

My advice would be go to doctors if you get in a car wreck or you need your appendix out but for the majority of health problems I have had to solve myself with a food diary, fasting and always always striving to eat a more nutritious diet. And not too much food. The more food you eat the more chance you will be exposing yourself to something that is bothering you.

I'm not saying don't go to a doctor for the IBS but if everything they are telling you to do does not work then try the food diary, fasting, clean eating method.

And keep researching, exploring ideas, talking to people, that's how I have solved all my problems.
posted by cda at 4:22 PM on August 28, 2015 [1 favorite]

No teflon for you.
posted by Oyéah at 4:31 PM on August 28, 2015 [1 favorite]

You don't mention any dietary solutions.... Have you tried any of these? Apologies if you have.

I encourage anyone with stomach issues to keep a food & symptom journal--it can help with your own sanity and may help you identify patterns. I found that certain foods were affecting me 3 days after eating them because of my food journal for example. I was feeling pretty terrible in general at the time, so I only felt comfortable drawing that conclusion after trying the same food at least 3 times and seeing if I had the same reaction.

In addition to FODMAP and Whole30 mentioned above, there is the Specific Carbohydrate Diet, the GAPS diet and AIP (auto-immune protocol) diets.

I'm not particularly endorsing any of these; they're just the ones I see mentioned the most. With any dietary change, I think most people do not give it enough time nor attempt it as strictly as they need to. Trying new diets is also complicated, time-consuming and costly, which I think tends to lead people to slipping up or "cheating." With some digestive problems, cheating does matter, so that's another thing to keep in mind.

Another suggestion I think I've seen elsewhere: consider meditating briefly (10-15 minutes) after meals. It may help your digestion.

Many alternative practitioners prescribe supplements of various sorts. I would be cautious with these--verify purity and track your reactions to them as well. Introduce them one at a time if you must take them. I found that some things made me quite sick and I believe some of the weird things I took made me worse off in the end.
posted by purple_bird at 4:51 PM on August 28, 2015 [1 favorite]

This is a stretch, but if you're desperate, possibly worth looking into - possibly you're (hyper)sensitive to/intolerant of salicylates?

I agree with other suggestions that are food diary related. Also this paper from 2013 (American Journal of Gastroenterology) might be an interesting read, and concludes
The majority of IBS patients believe that certain food items are important triggers of their GI symptoms. This is especially true for foods containing carbohydrates and fat, and also may be relevant for histamine-releasing food items and foods rich in biogenic amines. Self-reported food intolerance is associated with high symptom burden and reduced quality of life.
posted by you must supply a verb at 6:35 PM on August 28, 2015

First: The book Irritable Bowel Solutions. It breaks down research into different types of IBS and helps you determine if you are treating the right cause.

If that doesn't work or you've already gone through that book: food diary, dietician, elimination diet.

Beyond that, if you have a lot of pain, you could try asking your MD for a Bentyl prescription. It doesn't help everyone but if you're one of the ones it helps, it can make a difference.
posted by pie ninja at 6:45 PM on August 28, 2015 [2 favorites]

Best answer: Ayahuasca can heal IBS. I know two people personally who have done it. One of my friends worked on a documentary called The Sacred Science about plant medicine and 'incurable' diseases. One of the patients featured is a woman with IBS who is successfully treated. I highly recommend that you watch it. You'll notice she is taking other plant medicines to support her healing, which is something you'll really only be able to do in South America.

So, yes, it can work. But you need to go for at least a month, and it can be *really* tough. You really need to go to a skilled shaman who deals with IBS patients. It's worth it, though -- you will get so much more out of it than just being healed from IBS.

If you decide to take this route, feel free to PM me for some recommendations and advice. Good luck!
posted by ananci at 12:51 PM on August 29, 2015 [1 favorite]

Anecdata: my autoimmune symptoms were greatly improved when I realized I don't process dairy very well and gave it up.
posted by theora55 at 11:19 PM on August 29, 2015 [1 favorite]

Response by poster: I love you all. I mean that.

Thank you.

The wisdom of the crowd (a very smart and resourceful crowd) has immeasurably improved my life.
posted by falcon42 at 10:21 AM on September 7, 2015

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