Supplements

[Alysia]

Hi,
I was thinking that we can share what supplements we are taking to see what is missing/ too much etc.
This is my list, I take all these every day: (I hope that I wrote it ok in English. I had to translate it from the box I am using).

Folic acid 5mg
Zinc picolinate (like avazinc) 22mg
Vitamin D3 400 mg
Vitamin C 500 mg

And - Multivitamin containing the following:

Vitamin C 120mg
Vitamin B1 2.5mg
Vitamin B2 3mg
Vitamin B3 15mg
Vitamin B6 10mg
Vitamin B12 6mcg
Pantothenic acid 45mg
Biotin 300mcg
Folic acid 200mcg
Cilica 60mg
Zinc 30mg
Iron 18mg
Manganese 500mcg
Copper 1 mg
MSM 250mg
Faba 20mg
Choline 25mg
Inositol 25mg
Cysteine 90mg
Glutathione 1mg


thanks :cool1:

[Savva]

with all this you are gonna be fine. I take nothing but my meds (vitamin D and calcium of course included).

[Pete]

My supplements are as follows:
> Centrum silver (multivitamin)
> Caltrate + D 600 IU (2x/day)
> No flush niacin 500 mg/day
> Potassium 100 mg/day
> Aspirin 81 mg/day
> Phenylephrine 10 mg 2x/day
> Claritin 10 mg/day

I'm also taking the following Rx drugs for issues not related to GPA:
> Flomax 0.4 mg/day for urinary symptoms and hypertension
> Singulair 10 mg/day for asthma

[Wegetarian]

You guys don't use Omega 3 fatty acids? Heard they were good in reducing inflammation.

[Sjap0655]

I use acidophilus at night, take a calcium, magnesium and vitamin D pill (3 times daily), fish oil and folic acid.

[Pierre42]

- VitD (1000mg morning and nite)
- Calcium (600mg ditto)
- Magnesium (350mg? ditto)
- fish oil (4x1500mg ditto)
- MultiVitamin
- large amounts of two forms of Olive Leaf Extract (again, twice daily)

I've been formally declared In Remission a few months ago. Doc cut my MTX dose in half (to 10mg once weekly) and if my slate is still clean at the end of January we'll work down my pred (currently 5mg daily).

I'm doing the OLE on recommendation of a cousin-in-law my age who has Rheumatoid Arthritis but could not tolerate his MTX dose (ie he spent more than half each week bedridden due to side-effects, and during that time felt worse than not taking anything for his RA). OLE has made his life tolerable (no longer bedridden, working and hitting the gym again), so perhaps it's not 100% pure snake-oil.

From what I've read of the actually scientific/medical analysis of "how we think the active-constituent of OLE works" it does appear safe in cases of autoimmune disease, and I'm personally convinced it sounds like it should help in general (at least, in theory).

Anyhow everything depends on dose, and how do you know you your manufacturer has sold you anything other than a placebo in pill form (because this is NOT "medicine" it's unregulated, the stuff I'm taking could be extract-of-spinach for all I know), who knows if it interacts with anything else you're taking or suffering from, I am not a medical professional, nor do I play one on television, this is not medical advice, please DO seek medical advice, YMMV etc etc etc.

I'm not even slightly suggesting YOU should, but it worked for him and it's clearly not killed me, and my Doc says that my bloodwork "looks perfect".

[Alysia]

Hi Pierre,
cong for your remision :hug3:
what is OLE ?
I couldn't find it at google....

[Pierre42]

Aside from being that thing the crowd shouts in reply to a flourish by a Spanish Bull Fighter, it's my shorthand for Olive Leaf Extract.

[mishb]

My joints can't tolerate citrus so I cannot take vitamin C
I found a multivitamin that didn't have vitamin C in it, and my liver became inflammed, so I couldn't take these either.

Apart from my meds of pred, MTX and plaquenil, I also take vitamin D3, folate and Caltrate (calcium with D)



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

[Rose]

Hi

I have read wonderful things about Olive leaf Extract used as a natural antibiotic and decided to try it. Unfortunately it really upsets my stomach. But every now and then in desperation I would try it again until the last time when I actually vomited half an hour after taking it. It does state that it can cause stomach upsets and to take it after food but I think my stomach is just too sensitive. That is just my experience and I know that many people have had great results from it though I admit that I never read anywhere that it is used in the treatment of Auto Immune disease. I took it hoping it would help with GI problems and UTI's. Now I am trying Oil of Oregano which I seem to tolerate better. Other than that I take Vit D3, Milk thistle and a multivitamin daily. Think I should take fish oil. I recently tried a product called INflamX by Metagenics which is used mainly by UC and Crohn's Disease sufferers and I think that really helps my GI tract and according to the doc who recommended it, it helps inflammation throughout the body.

Rose

[Pierre42]

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


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! :w00t: :predrage:)


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. :scared: :mad1: (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 :lol::lol::flapper:

[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...

https://scontent-fra3-1.xx.fbcdn.net/hphotos-xap1/v/t1.0-9/11167797_1635144273364383_1969738306062063335_n.jp g?oh=b79efa98b5fc78ad7407d8b91e7d1146&oe=5602CF83

[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...

https://scontent-fra3-1.xx.fbcdn.net/hphotos-xap1/v/t1.0-9/11167797_1635144273364383_1969738306062063335_n.jp g?oh=b79efa98b5fc78ad7407d8b91e7d1146&oe=5602CF83

[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 (http://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.