Supplements

[Pierre42]

Pierre42 - we haven't seen you in the Wegeners Granulomatosis Australia, facebook group yet

So I'm guessing I've never told you my "facebook horror story".

...


At the end of 2010, I'd decided to cancel my Facebook account. I wasn't using it , and was getting sick of the constant security / privacy issues.


I was intending to cancel it in time for the first of Jan.

Facebook by that time had instituted a delay {10 days, or something} between requesting a cancellation and it actually for real taking effect ... but I'd forgotten and had actually cancelled after Jan 1.


... time passes, <insert wegeners diagnosis here, extreme bleeding into my lungs, basically drowning, two weeks in an induced coma for treatment where I quite literally almost die, two weeks hospitalised recovery after which I zombie-shuffle back into the real world> etc etc etc


After I recover, and am back at home, one day a random thought crossed my mind. (surprising I could think at all, considering at the time I was still hopped up on LARGE doses of Pred - wheeeee! )


I opened my gmail, and checked my calendar.


It turns out that the EXACT day when I first was sick (ie those first symptoms which eventually lead to me ALMOST DYING) was THE day that my Facebook cancellation actually took effect.




SO..... basically, cancelling my Facebook account *literally* almost killed me. (cue the theme from "Twilight Zone")

[mishb]

Whoa - Freaky.

Therefore, the moral of this story is - get your butt back on to facebook quickly .........and you will be cured

[savedbygrace]

Well, I'm late to the party so I don't know if anyone will ever read this.

I don't take all that's on this list but I'd like to!
This would be my ideal:

Folate (because I read an article that Folic Acid can't always be converted b/c some people don't have the enzyme??)
Fermented Cod Liver Oil (Vit A/D)
Butter Oil (K2)
Kelp (iodine)
Spirulina (for anemia) in smoothies sometimes
Krill Oil (supposedly stronger than fish oil?)
Tumeric
And I do not shy away from healthy/whole saturated fats.
Love grassfed beef, free range eggs, organic produce etc.
Of course, all these things are very expensive. :/

Does anyone have a story about success with the "Auto Immune Protocol" diet?
that would take a lot of resources and dedication but I'm thinking about taking on the challenge.

[Alysia]

Well, I'm late to the party so I don't know if anyone will ever read this.

I don't take all that's on this list but I'd like to!
This would be my ideal:

Folate (because I read an article that Folic Acid can't always be converted b/c some people don't have the enzyme??)
Fermented Cod Liver Oil (Vit A/D)
Butter Oil (K2)
Kelp (iodine)
Spirulina (for anemia) in smoothies sometimes
Krill Oil (supposedly stronger than fish oil?)
Tumeric
And I do not shy away from healthy/whole saturated fats.
Love grassfed beef, free range eggs, organic produce etc.
Of course, all these things are very expensive. :/

Does anyone have a story about success with the "Auto Immune Protocol" diet?
that would take a lot of resources and dedication but I'm thinking about taking on the challenge.

be careful with all those "diets". don't stop your medical treatment and be careful about stuff that can boost the immune system...

the next picture reflects my opinion about diet for cure.... I hope it is not too rude...

[morningsunshine]

Does anyone have a story about success with the "Auto Immune Protocol" diet?
that would take a lot of resources and dedication but I'm thinking about taking on the challenge.

I've been doing the Autoimmune Protocol (AIP) for 8 weeks now. The point of the diet is not to "cure" any disease, but instead to reduce inflammation in the body and help the body heal. I started the AIP when I found out I was relapsing at the end of March, to see if I could potentially taper prednisone faster and mitigate some of the side effects.

The idea behind the AIP is to:

1. introduce nutrent-dense foods like liver and organ meat, cruciferous vegetables, fermented foods, bone broth, herbs, etc.
2. remove all foods from your diet that could potentially be inflammatory or allergens, and then to slowly reintroduce each food and see how your body reacts.

I haven't reintroduced any foods yet, but I must say that I feel amazing. I'm clearheaded all the time, I have lots of energy, am sleeping better, having fewer prednisone mood swings, and I haven't gained any of the typical high-dose prednisone weight, which for me is a near miracle.

So far, my experience with it has been great. It takes a lot of effort in terms of time spent in the kitchen, finding recipes, figuring out what you can eat, but for me it's been worth it. The other downside is that eating this way can get expensive very quickly if you buy grass-fed, organic meats, wild-caught seafood, and organic produce.

Feel free to message me directly if you want more information.

[savedbygrace]

I've been doing the Autoimmune Protocol (AIP) for 8 weeks now. The point of the diet is not to "cure" any disease, but instead to reduce inflammation in the body and help the body heal
..

Yes! Thank you for clarifying! I know "success" is a confusing word and I wasn't implying cures either. you stated it so well.

I really want to focus on becoming healthy in general... A la traditional foods. As some foods are anti-inflammatory but many foods in the standard American diet are inflammatory. I would think this would be particularly important for those in remission.

I know there is grey area as far as which foods are allergenic and all, but generally the ideal of real whole healthy food is what I'm pursuing. It is hard to stick to (and pricey!) esp when your sick, but its worth a try right? I know I need to do better in this department,

thanks for for sharing your encouraging news! I'm super glad to hear it! It's a great motivator.

[savedbygrace]

This actually made me laugh!

nope I'd never stop treatment, that'd be nuts!

i Really meant that I'd like to hear positive experiences from people who may have tried focusing on anti inflammatory foods, or what the traditional/whole food folks call "real food".

but thats a GREAT point. This is not a treatment alternative we are talking about. but I think food does impact our health. And I think it's worth trying to improve. If anything could reduce symptoms, improve overall health, or help me stay in remission longer I'd like to try.

be careful with all those "diets". don't stop your medical treatment and be careful about stuff that can boost the immune system...

the next picture reflects my opinion about diet for cure.... I hope it is not too rude...

[morningsunshine]

Thanks! Yeah, defining "success" is a challenge in any case--especially when Wegener's has you in it's grip and you don't know what is a side effect of medication, what is the disease itself, and what may be caused by diets and/or supplements! It's sometimes a real challenge to know what is causing what.

Still, I feel better overall and that's enough to keep me going (for now). I'll post a longer update in a few months when I have more concrete results to report. I couldn't find any other Weggies online who have tried the AIP, but I would be really interested in others' experiences!

Also, since this thread is about supplements, here are the supplements I take daily now:
-Magnesium
-Calcium/Vitamin D
-Vitamin C
-Turmeric with bioperine
-Collagen peptides or gelatin
-Green tea (cup of tea a day)
-Probiotic foods--I'd like to take pill probiotics, but don't want to stress my immune system out too much
-Diatomaceous earth
-Grapeseed extract
-Cod liver oil on days I don't eat fish
-sometimes: Zinc, Folate, Capryllic Acid

I've thought about including garlic supplements as well, but again I don't want to overstimulate my immune system. The grapeseed extract, diatomaceous earth, and capryllic acid are all aimed at reducing candida overgrowth, because I've struggled with yeast infections the past few months--too many antibiotics in my system, I think.

In case you want to look up research about different supplements, I've found Independent Analysis on Supplements & Nutrition | Examine.com to be a great resource with lots of scientific research about the uses and studied effectiveness of each supplement. It also shows interactions with other supplements, so you can time them throughout the day. Of course, you have to keep in mind interactions with other drugs you may be taking as well!

[savedbygrace]

Wow! That really is so awesome. No prednisone weight too... That's so great. I'm starting to realize that if all organic/grass fed is financially unattainable, I could possibly still do AIp or wapf with conventional stuff too. That will be a cringe worthy shift in my thinking/shopping habits but Hey, gotta do what ya can right?

[savedbygrace]

excellent resource and reply, morning sunshine! I'd love to hear from you again about it in the future, as this is very important to me.
i never would have though about probiotics stressing the immune system! But that would make sense since so much of our immune system is in the gut.
wish you the best with the protocol and hopefully I can get to the place where I'm "on the ball" with a nutrient dense diet, too and share a story with you.