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#469702 - 05/15/12 10:50 PM Need to try nsd or lsd, diagnosed with ms + as
mommyperks Offline
New_Member

Registered: 11/07/11
Posts: 18
I can't treat the AS with any biologicals do to the ms and also can't do any nsaids do to bleeding disorder so I have to try nsd or lsd. I know from research about ms that diary and red meats are not good for ms, there is more to it but I don't remember right now. So if I try this how much variety would I actually have? I started eating meat in December to "prepare" because I just couldn't do it without. With 3 kids it would be to expensive. Then did Humira for a few months till things got bad and was diagnosed with ms, it wasn't due to the humira because I had an episode 1 1/2 yrs ago just didn't know what it was. Thought it was stress at the time. The other question I had is, how do you do nsd or lsd with children? My oldest doesn't eat noodles or rice already, never has. However my other 2 do. I know this is alot but I am at a loss right now needless to say
_________________________
live life for today, not tomarrow, or yesterday

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#469707 - 05/16/12 12:44 AM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: mommyperks]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
No kids at my house, but my sister-in-law has put her kids on a paleo diet which is low starch and they are doing great. They did not like it at first "where is our cereal???" but they have been able to drop their ADHD drugs thanks to her healthful home cooking. I remember she brought a Paleo cookbook, probably picking up one of those would help you as well.

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#469718 - 05/16/12 03:52 AM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: mommyperks]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8601
Loc: Brittany, France (since Nov 08...
Can also try LDN - Low dose Naltrexone. Check out the alternative site here. Follow the links. lowdosenaltrexone.org. Has helped many around the world, with MS. Also helped with AS and other diseases. Brilliant stuff. My doctor has MS and he takes LDN, plus keeps to an antiinflammatory diet - no red meat 'smile'. (Always admonishes me if I talk of red meat...which I don't much care for anyways!)

Hope this helps -

Take care
_________________________
MollyC1i - Riding OutAS

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#469724 - 05/16/12 04:45 AM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: mommyperks]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19020
Loc: Upstate NY
will also chime in with LDN, as there is more clinical evidence for its use with MS as compared to autoimmune. and it seems a safe thing to try.

as for diet. its really just a matter of changing habits to some degree. protein, veggies, fruit, nuts......i really don't miss the complex carbs. i'm on LSD which is a lot easier than hard core no starch. meaning i don't worry about the lower amounts of starch in veggies like root veggies or in some nuts, etc. just getting rid of the majority of the starch has helped my insulin resistance a lot.

for diet to have an impact on the arthritis, i found i had to give up (cow) dairy. blood work showed i was highly sensitive to the casein.

i read that gluten and casein sensitivities are both really common. and we'll be hearing more and more about the casein, the way we have been already for the gluten.

you might be interested in this woman's story. a doctor with MS. who brought herself back from severe disability through diet and supplements. i find it truly inspirational. 9 cups of fruits and veggies (mostly veggies) a day is the one mantra that really stuck with me:

http://www.youtube.com/watch?v=KLjgBLwH3Wc
_________________________


sue

USpA
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
pred taper for flares
occasional naproxen / Aleve
chiro
walk
no dairy (casein sensitivity), limited eggs
future: humira, soon I hope

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#469731 - 05/16/12 08:07 AM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: mommyperks]
gbash Offline
Decorated_AS_Kicker

Registered: 10/09/08
Posts: 724
Loc: Oklahoma
I got MS from Enbrel, and SSZ caused me terrible gut problems. NSD has made life tolerable again. I take LDN for the MS, largely due to the cost of the DMTs being out of reach. I don't worry about dairy and eat it, and I enjoy an occasional steak. I think the key is moderation in all things. Just don't go overboard with red meat or dairy.

I wouldn't put kids on NSD. Continue to fix them meals with whole-grain products; just don't partake of those yourself. Eat lots of fruits and veggies. Check into the recipes that use almond or coconut flour.

--Greg
_________________________
AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Now getting good results with no-starch diet.

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#469754 - 05/16/12 10:31 AM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: mommyperks]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8601
Loc: Brittany, France (since Nov 08...
Facinating Sue - Good presentation and the comments...! They really rip into each other.

Am surprised though that she has not come across LDN. Hmmmmm Stuff is soooo brilliant for dealing with inflammation.

Darn - have just snapped whole side of a tooth away from a filling...bu..er. Blast. Half a molar. Hope can get fixed here otherwise will have to go over to UK. Stinkers.
_________________________
MollyC1i - Riding OutAS

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#469807 - 05/16/12 08:50 PM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: gbash]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
Originally Posted By: gbash

I wouldn't put kids on NSD. Continue to fix them meals with whole-grain products; just don't partake of those yourself. Eat lots of fruits and veggies. Check into the recipes that use almond or coconut flour.


Technically, the coconut flour is more healthful than whole-grain for normal people[1]. My sister-in-law does stuff like that in place of grains. I wish I could eat the stuff myself -- coconut pancakes and so forth really taste great. Suggest trying out some of the coconut recipes posted in the diet forum; your family may be perfectly happen with them. The kids can always eat typical starchy junk food when visiting friends, it doesn't have to be at home.

[1] more refs provided at a point when I'm not so busy, if people really want the details

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#469873 - 05/17/12 08:58 PM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: mommyperks]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5132
Loc: So Cal (high chaparral)

Hi, mommyperks:

I don't think You will want for variety when You have Carol Sinclair's book along with the great recipes caring people here have added.

However, for Your situation I have some information not yet published on this site that we are working to make public, but email me directly at anzaltopo@yahoo.com and I will send to You the preliminary reports.

Best to You and I wish You much renewed
HEALTH,
John
_________________________
HANLON'S RAZOR: Never attribute to malice that which can be explained by stupidity.

Important AS Resources

RED ARROW --> Philippines

Professor Ebringer: On Diet and AS;


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#469926 - 05/18/12 02:18 PM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: mommyperks]
naj Offline
Gold_AS_Kicker

Registered: 10/04/07
Posts: 1599
Loc: U.S.A.
hi mommyperks,
I wanted to suggest a link elanaspantry.com She has MS and she has been eating grain free for years and years, so many of her recipes are perfect for people with AS. I also wanted to share Bob's blog: sickopportunity.com He has written helpful intros to the AS diet that may be just what you are looking for.
With a family, I would suggest one more blog: everydaypaleo (dot com? Well, just google it, ok? : ) because the author of that blog cooks paleo for her whole family, and many of the recipes are just perfect for people on the AS diet.
Was this helpful at all?
All the best to you and please keep posting and let this community support you.
_________________________
______________________
Jan
(naj)

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#469927 - 05/18/12 02:20 PM Re: Need to try nsd or lsd, diagnosed with ms + as [Re: mommyperks]
naj Offline
Gold_AS_Kicker

Registered: 10/04/07
Posts: 1599
Loc: U.S.A.
...I also wanted to chime in with a PS: it can be helpful to cook grains, starches and so on for your children that do not tempt you! For example, if you are so crazy about pasta...why not make some sweet potatoes instead, just as an example...
_________________________
______________________
Jan
(naj)

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