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View Full Version : Diet/Vitamins effective for Systemic Lupus



bunyip
12-12-2006, 04:57 PM
Hi all,

Newbie to this board (48yo male) and just wanted to report that I have treated mild Systemic Lupus successfully after testing for food intolerances (mostly Bovine products/wheat/legumes) and taking targetted vitamins (mostly B complex and Amino Acids these days).

Because of a complex history, I have never been prescibed or taken drugs for the condition. (see my entry in newcomers topic).

The Dr who treated me is Chris Reading in Sydney and is an international authority on nutritional treatment of serious illness. He qualified as a vet, GP and psychiatrist (in that order). Former Vets tend to be much better at diagnosis because an animal will never answer stupid questions like "Ok, what's the problem?".

Reading specialises in the overlooked area of genetic factors but dont be put off his focus on this area. He uses Sydneys comprehensive testing labs and uses hair analysis, iridology, medical palmistry, and other techniques to draw a picture rather than come to a definite conclusion.

He saved my life.

:D

kkelly
12-12-2006, 07:17 PM
That is interesting. Coincidentally I am going tomorrow for allergy testing and I have been taking B12 and B6 for the past month and swear I have been getting better.
Thanks for the post! Glad you are doing well.
Karen

atedj
12-14-2006, 12:34 PM
I also had food allergy testing done. It was interesting to see proof of some foods I already KNEW would make my Lupus-symptoms worse. I also found out about some foods I have severe reactions to that I had no idea. Things I ate almost every day, like peanuts and eggs. The money I spent to do the testing (not covered under insurance) was totally worth it as I now know for sure what foods to avoid instead of just guessing.

bunyip
12-18-2006, 06:15 PM
That is interesting. Coincidentally I am going tomorrow for allergy testing and I have been taking B12 and B6 for the past month and swear I have been getting better.
Thanks for the post! Glad you are doing well.
Karen

Just watch that your vits. dont mask the allergy testing (BTW diet affects Lupus as a food intolerance not allergy. Allergy is much more severe. Food intolerance is a buildup over time and can be harder to detect). As mentioned, I need to avoid mostly bovine (beef & milk), wheat, legumes, and deadly nightshade foods. Food intolerances will vary between individuals - these are not "Lupus" causing foods as such - but your specific food intolerances can irritate your immune system and trigger your Lupus.

You need to be careful not to take high doses of B6 for too long. Always take a light B Complex "cover" with particular B group vitamins as they act together and you may deplete yourself of the other B's if you take B12/B6 alone.

Other vits I take as the mood dictates are Coenzyme Q10 - Omega3 - Chelated Calcium - Calcium+Magnesium - L-Tryptophan. The effect of a vit. you need can be quite dramatic (<1 hour) and so you soon discover how each vit. benefits you and take them for the benefit they deliver. I initially got a lot of benefit from high B group intake B1/B2/B3/B6/B12 - but after a few years I started getting by on one strong B Complex (daily).

(BTW, when I took my first 2 chelated calcium vits I had a nap for 15 mins and woke suddely to what seemed a violent blinding light - as if I'd been just been struck by lightening. It was both a frightening and fantastic sensation - never happened again! :-) )

I have regular vitamin "holidays" (2-3 days at a time) usually when I feel well enough to do without them. They beauty is that once you feel ok, you dont have to keep taking them (you wont get any extra benefit anyhow).

Also, eating less is a definite plus. I regularly skip the evening meal and settle for a cup of tea instead. My Lupus was rarely a problem when I was thin - I'm not fat but I'm 15Kg over my thin weight of 70Kg. I've set 70kg as my lifetime and permanent wieght goal - slowly getting there.

8)

kkelly
12-20-2006, 08:09 PM
Hi Bunyip
This is great information. The allergy testing came back with several foods (dairy, wheat, tomatoes, bakers yeast were the main ones) they rated them between 20-40 - these were 35. I am cutting out the dairy but wheat is a big one for me. I don't know how I will do it - not before christmas. He also started me on a yeast buster regimine. Its definitely worse the past few days, supposedly gets a bit worse before better. Just curious, about the vit b6 b12 thing....how long can I take them? I seem to feel much better on them. Its been about 2 months.
thanks again for the terrific post.
karen
PS I agree about the body weight thing...same holds true for me.....I feel much better also if I eat a low fat diet.

bunyip
12-21-2006, 08:29 PM
Hi Karen,

Vitamin B6 questions are answered here (and many others):
http://dietary-supplements.info.nih.gov/factsheets/vitaminb6.asp#h7

I dont take B6 seperately anymore, but when I did it was 2 months on 2 months off. You're ok with B12 because its pretty unstable and hard to OD on.

Yeah the wheat issue was interesting for me too. I stopped all wheat for about 2 weeks and decided it was just too hard. When I finally caved in and had some toast it made me so dizzy I just about fell over! So the effect is quite noticable (after you go back to it). I decided to dramatically cut down rather than to completely stop the wheat thing. Same with dairy.

Having got my health back, I only completely stop these foods when I start feeling ill. This means I can still anticipate Lupus flares at odd times and this happens about 2 or 3 times a year. But upping the "right" vitamins and avoiding all wheat/dairy(etc) during a flare and being disciplined at those times greatly reduces its impact & I completely recover usually in 2 or 3 days (although I'll often take a week off work just to be sure). Its probably not the best approach to risk your health this way, but the psychological benefit of living "normally" is important too.

No question youd be much better of never having the foods you shouldnt, but I just cant live like that. And dont forget, the rest of the time I'm absolutely 100%. I'm bodysurfing, running, excercising (etc) (etc) like there was nothing wrong with me, albeit still being careful not to over do it.

I'd like to post some more helpful info - but I'm a bit out of date. I should have more useful stuff in Jan.


Bunyip :wink:

kkelly
12-28-2006, 05:05 PM
Hi Bunyip
Hope you had a nice christmas. I did -unfortunately I think I overdid it and am having a flare. It is combined with bronchitis/head cold - probably triggered the flare. Anyhow, any advice on what supplements to take when heading into a flare? Also, have you ever heard of UVA-1 light therapy for lupus? You mentioned that you are very active and body surf, does this mean that you are not photosensitive? I ask because I don't think that I am. I am always careful to avoid the sun and use sunscreen, but overall I don't feel worse after being in the sun. I also started using UVA-1 light therapy after reading the book lupus underground. It definitely helps the fatigue. (which has been bad)
anyhow any advice would be most appreciated!
thanks
Karen

homenow
12-28-2006, 08:12 PM
I get sick to my stomach after eating Kentucky Fried Chicken. Must be the oil they cook it in. Anybody else have that happen to them?

bunyip
01-04-2007, 12:38 AM
Hi Bunyip
Hope you had a nice christmas. I did -unfortunately I think I overdid it and am having a flare. It is combined with bronchitis/head cold - probably triggered the flare. Anyhow, any advice on what supplements to take when heading into a flare? Also, have you ever heard of UVA-1 light therapy for lupus? You mentioned that you are very active and body surf, does this mean that you are not photosensitive? I ask because I don't think that I am. I am always careful to avoid the sun and use sunscreen, but overall I don't feel worse after being in the sun. I also started using UVA-1 light therapy after reading the book lupus underground. It definitely helps the fatigue. (which has been bad)
anyhow any advice would be most appreciated!
thanks
Karen

Hi Karen,

Yes I had a great break, and was mostly kitsurfing hard out in the sun for 2 weeks. I do have problems with photosensitivity and too much sun, and I was feeling it too this week. It does take a lot of sun though - but we have plenty of sun (too much?) here in Australia (worlds highest incidence of skin cancer). If you're in the Northern hemisphere then the sun probably wont be an issue for this time of year. But it also depends on your sensitivity.

I had calculated the risk and decided my fun would have to end about now (it has) and I'm now in recovery mode. Doing very little but feeling very stressed. I'm ok 'cos I'm not working yet & can rest up.

I can only advise that I find a strong BGroup complex (Eg B-100) is the first thing I reach for - always. Amino Acid complex is next. If I cant sleep or am depressed I go for L-Tryptophan (banned in some countries because of a possible blood disease issue - I'd say unnecessarily). Even though I should stay off Bovine products I am resilient enough these days to be able to have a hot milk chocloate drink now and again to get me off to sleep - always very efffective.

I suggest try to find a natropath who understands Lupus. You cant go too far wrong. :wink:

bunyip
01-04-2007, 12:45 AM
I get sick to my stomach after eating Kentucky Fried Chicken. Must be the oil they cook it in. Anybody else have that happen to them?

How bout that! I had to stop eating all junk food before I even knew I had Lupus - about 1984. McDonalds pickles make my head spin instantly. I've never like KFC full stop, but I get the same sick stomach when I eat fried Asian food. Its the oil - they use "trans fats". (See http://en.wikipedia.org/wiki/Trans_fat).

If you have Lupus you need to stay off all junk food. Its dangerous to you, no kidding.

Bunyip

Suzanne960
02-23-2007, 04:11 PM
L-Tryptophan is still available :?: My stepfather has eosiniphilic myalgic syndrome from taking that. It is banned here in the US. But perhaps some believe it is worth the risk.

MARYCAIN
02-23-2007, 05:46 PM
L-tryptophan is no longer technically "banned" in the US - not since DSHEA (Dietary Supplement Health and Education Act of 1994) was passed, giving manufacturers the right to market dietary supplements without FDA approval. The product can be manufactured and sold in the United States - it simply cannot be imported - other than certain additives not intended for human consumption. Almost all the cases of EMS in the United States and in Japan were eventually linked to L-tryptophan from a single contaminated source - a Japanese company called Showa Denko - not the amino acid itself. L-tryptophan itself is still routinely added to infant formulas, baby food, nutritional products like Ensure and so on - it was never restricted from use in those products.