Hacker News Reader

Comment by treeman79 | Hacker News Reader

Support groups are best. Knowing your not alone. A safe place to ask questions. Facebook groups are biggest and best. Reddit has a lot too. Various podcasts and foundations. From these you start seeing patterns in what works for people, how to find doctors.

For me.

In order of improvement. Prescription: plaqunial. Blood thinners.

Avoiding flare triggers, Sun, heat, most foods.

Diet is huge. Autoimmune protocol diet is best for me. Similar to keto, etc. Personally I’ll eat a lot of sweet potatoes when I need relief. Safest food I have found.

Supplement: Vit D, magnesium, Vit E, fish oil, B complex, CQ-10 turmeric.

Autoimmune often means a lot of secondary conditions, or autoimmune is the secondary.

Increased cranial pressure is somewhat common with Sjogrens for example. High pressure is brutal on the mind and body.

Went from bed ridden in horrific agony all day to kayaking or equivalent every weekend.

View on HN

It makes me so happy to read this! I too have had a drastic transformation in terms of life quality.

I second the Anti-inflammatory diet and exercise (even just walking contributes greatly). I echo the supplement suggestions and also recommend glucosamine+chondroitin (which happens to lower all-cause mortality significantly).

Red meats (high omega 6 content), deeply fried foods, gluten (plenty of grain alternatives to wheat and corn), uncultured dairy (cheese seems ok, plenty of alt-milks out there), and sugar not from fruit can trigger inflammation for me. I might describe my diet as vegan+eggs+fish (ovo-pescaterian?)

There is a wealth of information online to tailor one's diet. Honestly - this is a diet that everyone can benefit from health wise.

I'm jealous that you can eat grains! Any kind sets me off unfortunately. And yeah it took me a while to realize but any kind of fried food is bad for me. So even eating coconut tortilla chips sets me off, despite the fact that they contain no grain. I am hopeful that in the future, more paleo / autoimmune paleo targeting brands come out. There was already a pleasantly surprising amount of brands catering to this, last time I was at a whole foods.

For those who can't tolerate dairy, or any kinds of nuts or seeds or grains, one kind of food that you might enjoy is coconut yogurt. Not cheap but it helps to break some of the dietary monotony.

Ah, that's a shame... Nuts and seeds actually make me feel a lot better (was my only snack for a while, when I couldn't eat fruit) and I feel lucky to be able to eat brown rice. If I eat wheat-based pasta or bread however, my body will let me know in minutes.

It really is awesome that we can find what fits us with large store brands that deliver! Never knew how many forms of vegan protein exist out there

I found following a "yellow / red flag" system helps me. Some foods will trigger my inflammation (many of the ones on your list), however it often requires multiple overlapping stressors or triggers. So on any given day, eat one bad food item it's a yellow flag. Eat two bad food items I'm on a red flag condition. Or perhaps it's work stress and food, etcetera.

The reason for the yellow/red flag system is to not impose a strict limit, but as a way to inform myself I'm in a danger zone. Primarily because many foods I love (ahem brownies!) are a flagged food. Telling myself "no", when I'm stressed or foggy state, often fails. However a "red" flag state helps bring out my inner engineer: “Can'nae take any more, Captain!”

That's a really good way to formalize things! I've been following a form of this subconsciously, it seems. It's great to fall back on a tried and true system when the willpower or appropriate state of mind isn't there to make the choice simple. Sometimes one just needs a way to ensure the yellow flag one would really enjoy doesn't turn into a red one.

There's probably a terrible joke to be made here about red shirts but I can't muster it

Have you looked into the Carnivore Code in regards to autoimmune issues? https://carnivoremd.com/book/

It's full of useful information even if you don't intend to go full carnivore.

Could you please provide links to these reddit support groups, and podcasts and foundations?

Have you tried using the mushroom [extract] Cordyceps as a supplement? It seems to help abate some symptoms when I eat an autoimmune triggering food.

Wait...isn't cordyceps the fungus that takes over ants, bursts out of their skull, and then cause them to effect others? That sounds like something I'd run away from at full speed.

Do you have a link with more info? I just popped 2 of these [1] an hour ago as I had eaten some kind of food/protein bar that tasted like it contains pea protein, a known trigger of mine. I live in a country where I can't read the language so I'm not sure exactly what I ate.

https://www.nowfoods.com/supplements/cordyceps-750-mg-veg-ca...

The Wikipedia article contains basically all the information in this bit of the thread, but accurate: https://en.wikipedia.org/wiki/Cordyceps

Google zombie ants. Maybe it's ok for people?

https://www.facebook.com/groups/476448932387693/?ref=share

/r/Sjogrens /iih

Podcast Sjogrens Strong

Good resource Sjogrens foundation John Hopkins Sjogren foundation for more up to date testing and articles

> Went from bed ridden in horrific agony all day to kayaking or equivalent every weekend.

Did you have muscle pain?

Reply on news.ycombinator.com