How I got much better

In the last 18 months, I stopped going to doctors and instead focused on self-experimentation. Many experiments failed, but overall it’s been a big success. Some symptoms are completely gone, some are still alive but few and far between, and some are thriving as well as for the last 15 years.

This post was supposed to be titled Living with histamine intolerance, part 4, but I don’t classify as histamine intolerant anymore. You can read parts 1, 2 and 3 to get better context, though.

Feel free to get inspiration from my experiments but remember that there are risks involved.

Life-style changes that worked

Sunlight

I always wondered why I felt better in the summer and worse in the winter. Each November my ability to exercise rapidly dropped, except when I spent autumn in sunny California and the symptoms were then postponed by two months.

I’ve tried spending every second in the Sun but it was very difficult to do in Sweden. Spending one week under the Arctic Sun didn’t do anything. Two days of kayaking helped a lot, but not as much as 3 hours of full-body sun bathing. Sunlight is the best cure against insomnia and bad sleep.

On the other hand, taking vitamin D in winter helps but doesn’t bring the full effect. It’s not so surprising, since sunlight does more to our skin than just vitamin D production and we’re only discovering those effects now.

Dietary changes

Diamine oxidase (DAO) is an enzyme that regulates histamine in our bodies. The only macronutrient increasing DAO concentrations in the intestinal lymph in rats is fat. In another study of rats, MCT oil increased DAO activity 2.5 times in the intestines.

Even though I’m not a rat, I had to try it out. Did it help? Maybe it did, maybe it didn’t. It’s true that my DAO levels are 3 times higher than before, but I have too little data to judge causality. An unexpected side-effect was a big decrease in headaches and migraines. This is perhaps not that surprising, since MCTs boost ketone production and ketogenic diets are therapeutic for a few neurological conditions.

The second big change in my diet was eating nose to tail – eating other parts of animals than just muscles. Organ meats are cheap, easy to cook and super-nutritious. Skin, bones and cartilage are rich in collagen, which seems to be beneficial for many. The nutritional wars concentrate too much on carbohydrates versus fat, while different proteins and amino acids are often ignored. That’s likely a big mistake.

I’ve changed other small things in my diet, but listing them all would need another full post. Luckily for you, someone made a nice infographic and wrote a book about my diet 4 years ago. After I found out about people copying my diet, I read the book and had a lot of Aha! moments. That being said, the book is overconfident at times and I’d be extra careful following their advice to the last word. Also check Scott Alexander’s critical review.

Probiotics

Abdominal pain has been my number one problem for years. I’ve consulted doctors and tried many things, but those brought minor improvements at best. With Lactobacillus plantarum, the pain was gone within hours. Bacillus coagulans was also helpful for better digestion, but I had to take it every day and was later able to achieve a superior effect with glycine-rich foods, so I stopped taking it.

While I swear by L. plantarum, I do believe that probiotics are mostly unnecessary. If you have to take them every day, there is probably a deeper problem that needs addressing.

Intermittent fasting

I’ve previously written about two stressors, cold showers and exercise, helping me cope with various symptoms. At about the same time I’ve started experimenting with another stressor: intermittent fasting. Surprisingly, fasted state is when I have the best focus and productivity. I usually skip breakfast and only eat within an 8–9 hour window, with a big lunch and a big dinner (or two).

Fasting is a stressor that requires caution, but an intuitive approach works well for me. When the body stops telling me “This is uncomfortobale, but I like it” and switches to “Are you trying to kill us?”, it’s time to listen and eat something.

Supplements

I don’t like using supplements, because I often forget to take them. However, they are a great tool for controlled experiments. For example, I’ve taken pure glycine for two weeks with great results and after that incorporated a lot of collagen into my diet (with the same results).

It’s all just placebo and correlation doesn’t imply causation!

If everything I’ve experienced is a placebo effect, where was it for the previous 4 years? Out of the 50+ lifestyle changes, prescription pills, supplements and probiotics I’ve tried, only about 15 worked. If there was placebo effect, it must have been negligible. However, the good ol’ regression to the mean (patients getting better on their own) definitely played a role. Then again, I’ve tried relying on it many times before and it was never sufficient on its own.

How do I know the interventions listed above helped? Either I’ve done sufficiently many experiments or the effect was so strong it’d be impossible to explain otherwise. For example, after taking nonsteroidal anti-inflammatory drugs (NSAIDs) regularly, strong abdominal pain started. Wikipedia lists gastrointestinal problems as the main adverse effect of NSAIDs and they are also known to disrupt gut flora. Nothing has helped me for years. Then one day I tried Lactobacillus plantarum and the pain was gone within hours. Fixing other stomach problems took another 10 months, but at least the pain was gone. Also, L. plantarum is one of the few probiotics that performs in medical trials on people and in other studies, animals benefited from probiotics after being given NSAIDs.

A true skeptic would say that correlation doesn’t imply causation and that such evidence is not sufficient. Many people don’t believe successful stories and dismiss any kind of evidence, often because it contradicts their beliefs.

Skeptics are right that no evidence is perfect and we can never be completely sure. I admit I didn’t use an identical twin as a control group and I didn’t double-blind my fasting experiments. However, my personal experiments showed that skeptics are as likely to be wrong as the people they criticize. I’m glad I didn’t listen too much to sites like QuackWatch and Science-Based Medicine, otherwise I would probably avoid probiotics, cholesterol and fat for no good reason.

The new skeptic movement reminds me of the disagreement between academic skeptics and Pyrrhonian skeptics 2 millennia ago in Greece. Academic skeptics claimed “Nothing can be known, not even this” while Pyrrhonians viewed them as too dogmatic. I’m siding with Pyrrhonians here and my advice is: be skeptical, especially of skeptics.

This post is getting too long, so let’s take a short break with classical music.

Self-experimentation and its risks

A while back my mom told me to drink a particular herbal tea to alleviate some of my symptoms. I replied with “If this herb was effective, it’d have performed well in scientific trials and doctors would have prescribed it to me.” The statement does make sense, but it involves many strong assumptions and often isn’t true.

As an example, there is a drug called ramelteon, which binds to the melatonin receptors and for all we know it has identical effects to melatonin and performs about the same as melatonin in clinical trials. A monthly supply of melatonin is about $5 while ramelteon costs $100, yet doctors prescribe ramelteon instead of melatonin. Or one time I asked a Swedish gastroenterologist about her opinion on L. plantarum and other probiotics. She told me I know more than her and I should keep trying. This is despite plenty of successful clinical trials, many done on Swedish universities.

The previous two examples were cures that proved themselves in trials. Using fat and MCT oil in particular to increase the production of DAO has only been tested on rats. Perhaps it also works on people, but as far as I know no experiment was done on people, so doctors wouldn’t recommend it.

Medicine seems to miss a lot of treatments, so self-experimentation might be worth it. It does bear a lot of risks, so I evaluated possible adverse effects and monitored my health. For example, I’ve closely monitored my cardiovascular risk factors and they stayed the same or improved. However, I don’t trust these tests completely. A comprehensive heart-disease blood test would include 5–7 different blood values, but despite so many numbers, its predicting power is limited. I believe that there is too much focus on lipoprotein particle size and soon a more important risk factor will be discovered, so I’m not pronouncing myself completely out of risk yet.

Blood tests are tricky to interpret for another reason. Some blood reference intervals are calculated so that exactly 95% people fall inside them and it’s not always clear if sick people are included or not (see here or here). Unfortunately, many doctors don’t know that and would diagnose you sick or healthy solely based on these arbitrary numbers. It reminds me of a TV discussion with someone complaining that poverty in the US has stayed exactly at 20% of the population for the last 100 years. This came as a big surprise, so the moderator asked about their definition of poverty. “It’s the poorest 20% of the population”, the first person said.

So I take blood tests and reference intervals with a grain of salt. Perhaps more important is tracking values over time and comparing them with a younger version of myself.

Disclaimer: While I don't have a lot of trust in medicine and doctors anymore, a world with doctors is much better than a world without them. Doctors are awesome at fixing anything acute or live-threatening. Next time I break my leg into six parts while skiing, I'm sure doctors will do a great job. It's the chronic conditions where my trust disappears.

Further reading

I recommend 3 blogs for anyone interested in health and medicine. And one crazy idea.

• Whole Health Source: Stephan Guyenet is a neurobiologist blogging mostly about obesity but also other topics. He was one of the scientific advisors of the Perfect Health Diet book, but he would disagree with parts of it and his diet is slightly different, too.
• slatestarcodex.com/tag/medicine: Scott Alexander—the best blogger on the Internet—is a psychiatrist by training and often blogs about problems in medicine, including drug discovery, life-cycle of medical ideas and how skeptics exaggerate their claims. This blog hasn’t affected my life-style but it pointed out the common problems and gave me arsenal to evaluate medicine.
• Mosaic: A non-profit website with awesome scientific journalism about anything life related. Again, I learned a lot from this website but it hasn’t affected my life-style.
• If you like crazy ideas, Robin Hanson suggests to cut health care spending in half, since spending on health care doesn’t correlate with health outcomes anyway. I’m not buying it yet but the idea is worth pondering, as are all Robin’s ideas.

I’ve also read other websites and watched a lot of YouTube videos, but it’s a minefield that is very difficult to navigate. Especially nutrition discussions are often worse than politics or gender, with people citing facts out of context, ignoring evidence and sticking to dogmas. For example, many people benefit from vegetarian or low-carb diets and then preach them as the healthiest diets for everyone. Perhaps they are helpful in certain situations, but that doesn’t mean everyone should follow them or that they are safe in the long term. And some people don’t benefit from any diet, so they become radical skeptics and question everything. Usually there is some truth in each dogma, but some people take them too far.

Maybe this post is also full of untrue dogmas, misrepresented scientific findings and without contradicting evidence. Only time will tell. I tried to do my best, though.