What and how?
I hope people can take benefit of my experience (and do so carefully and safely) and I hope that others people's experiences can help shed more light on how this works best and for what groups of patients.
Further work:
- Eating papaya fruit at the start of each protein rich meal gave me a significant improvement in health. Papaya contains a strong enzyme called papain https://en.wikipedia.org/wiki/Papain.
- I suspect it is papain's enzyme breaking down proteins that works thus I also adapted minor things to improve my digestion such as drinking a glass of water or ginger tea before each meal, drinking only a small glass of water after a meal and chew my food even better then before.
- I started to eat small bits of ripe fruit at diner and supper. After good results two weeks later I ate papaya before breakfast too.
- I only eat ripe skinned fruit. The total amount a day I consume is about 150 grams. With meals low in protein the amount is less then 50 grams a meal, with meals high in protein it's more.
- Note that ripe fruits are not all yellow/orange in my experience: they're that soft that I consider them overripe. I think they're ripe when they are green with a touch of yellow.
- I don't use any other parts of the plant such as leaves or seeds. They contain more enzyme but in unknown large quantities. I haven't experience with papain supplements either.
- After three weeks I started to use a toothpaste that does not contain sodium laureth sulfate to help deal with the aphthous ulcer problem.
- After one week I felt a definite change in my body.
- After two weeks I considered it a 50 % improvement in health, compared to where I started.
- After more then six weeks I still keep improving slowly and sit at a 70% improvement in health.
- 70% improvement in health does not mean I do 70% more a day! I estimate I could do 70% more if I kept exhaustion levels as before. I however learned that only leads to crashes and thus I split progress between doing more, building some margin and buffer and having better quality of life.
- Now on average I do 20 to 30% more a day, stay better away from exhaustion and PEM, do sometimes 50% more then before and still recover well, have a quieter mind, can use my mind better and finally I feel better.
- I'm now at about 20-25% of normal functionality I estimate.
- My amount of acne is lower then long before my illness started. I haven't had aphthous ulcers in about two and a half weeks now either. That must have been years before my illness started.
- Now my belly area feels better after a meal then it used to feel before. I long did think my stomach and gut were the only thing not affected in my ME. Probably it was just that other sources of pain and discomfort were far greater and therefore I made this wrong conclusion.
- This simple tweak gave me more improvement in health then all previous diet and supplement changes combined. It also gave me more improvement then any medicine did, without the side effects.
- As WebMD says: "Papaya is LIKELY SAFE for most people when taken by mouth in amounts commonly found in foods." Some people do however use the plant in very different ways. I believe using it like a normal fruit is key to minimize risks.
- Potential warnings, amongst others: when pregnancy and breast feeding, when taking meds to lower blood sugar or when having low blood sugar as papaya can lower it further and when having papain allergy related to latex allergy. It may also interact with warafin (Coumadin).
- Always consult your doctor or nutritionist before trying out things found on the internet .
- I do wash my hands after cutting papaya, as I don't want to touch my eyes with fingers dripped in an enzyme breaking down protein. Drinking a glass of water before meal and thus before eating papaya also increases protection of the throat from this enzyme.
- For some people, eating vegetables and fruits in one meal is said to cause bloating.
- Naturopaths use papaya to fight intestinal parasites. While having less parasites is mainly a good thing, parasites suppress also the immune system and therefore allergic reactions.
- https://www.webmd.com/vitamins/ai/ingredientmono-488/papaya
- https://www.drugs.com/npc/papaya.html
- I recently learned that I do not have very frequent cold sores, but aphthous ulcers aka canker sores https://en.wikipedia.org/wiki/Aphthous_ulcer. What causes them is not exactly known but biopsies show they are full of T-cells and patients also have circulating lymphocytes which react with heat shock protein.
- I did not have 3-6 times ulcers a year as affected patients have on average but every other day when I was at the worst of my ME disease. They were bigger then average too.
- The I found this link https://www.facebook.com/Autoimmunethecauseandthecure/posts/802052356554950:0 that related these to undigested and poorly digested protein entering the blood stream.
- This lead me further to the concept of NETosis.
- It all made sense for my disease: an auto-immune reaction without classic markers, an auto-immune reaction that is not targeted to a specific cell type but to "rogue" proteins that can reside near anywhere inside and outside cells, a immune system that's very busy fighting the problem, NETosis that is ideal for cleaning this mess up without permanent damage (if all goes well) and in my youth my mother and I had very high pancreas markers indicating there may have been something wrong with it (the pancreas produces key digestive enzymes). As well, the list that can trigger protein misfolding is near identical to the list of things that affect ME patients. En plus, when protein misfolding can't be kept under control it can trigger body wide inflammation and reduce metabolism.
- This is only the second thing that gave me improvements out of the box, and the first that did so without any side-effects.
- All other things that did improve me has cost me plenty of time, trial and effort to get them working well and reliable. Learning more about potential working mechanisms proved very valuable here.
- Having better clues as to how it could work helps in finding what treatments may or may not fit a person and it helps to get reported results to the ME community to be more consistent.
- See "how I came to use papaya" above: due to a protein digestion problem problematic proteins enter the bloodstream. Papain breaks them down before they enter the bloodstream.
- Poor protein digestion causes strong gut inflammation affecting the hole body.
- Poor protein digestion causes gut bacteria imbalance or promotes bad gut bacteria.
- The three points above cause malnutrition.
- Better protein digestion allows the stomach and gut to do less work, leaving more energy for the rest of the body.
- Papain can break down immunogobulins and in this way modulates inflammation or auto-immunity: https://en.wikipedia.org/wiki/Papain
- I could have a "classic" case of protein intolerance and papain is able to break the offending proteins down so good that they don't reach the gut. I therefore can eat them potentially without problems.
I hope people can take benefit of my experience (and do so carefully and safely) and I hope that others people's experiences can help shed more light on how this works best and for what groups of patients.
Further work:
- I'll first try and heal my gut on the current protocol plus I'll start using probiotics to help restore the gut microbiome.
- Then I'll try and learn if a particular protein is the main culprit. I'll hope to do a partial elimination diet only where I reduce amounts consumed of a food class by about 80%. I do not wish to loose gut bacteria and needlessly become intolerant to a food. It's hard to estimate that risk. Because I'll plan to start this only after I tried to heal my gut, I'll hope to improve speed of testing in order to avoid further imbalancing my gut microbiome.
- Somehow I'll try to learn if fat and or carbohydrate digestion is affected and if the stomach is working adequately.
- I'll keep you posted and hope to learn from commenter's experiences.