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Joined: Feb 2010
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Gold_AS_Kicker
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Gold_AS_Kicker
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Hi everyone!
Happy New Year!
Hope you all had a great Christmas!
I have been away over Christmas and New Year, just getting back into the swing of things here.
Goodness you lot have been busy!
I have such a lot to catch up on eek2

cheerleaderTink


KickAS and help others do the same!
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Posts: 9,843
Very_Addicted_to_AS_Kickin
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Steve - MS? LDN is proven to be great for handling MS... Might give it a try! But not if on TNF as the two don't mix, but if want have a word with Dr Lawrence (who has AS, MS and has his iritis under control with the LDN for 20 yrs now...good innings.) Just a heads-up suggestion. OK?


MollyC1i - Riding OutAS
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Posts: 9,843
Very_Addicted_to_AS_Kickin
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Hi Tink - Great to have you back. Hope the holiday was one of love, fun and laughter...

Happy New Year - Bonne Sante


MollyC1i - Riding OutAS
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HAPPY HEW YEAR TINKERBELL! cheerleader


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Sep 2001
Posts: 2,192
Major_AS_Kicker
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Originally Posted By: Mollyc1i
Steve - MS? LDN is proven to be great for handling MS... Might give it a try! But not if on TNF as the two don't mix, but if want have a word with Dr Lawrence (who has AS, MS and has his iritis under control with the LDN for 20 yrs now...good innings.) Just a heads-up suggestion. OK?


Thanks Molly, I will ask my neurologist about it.


Steve Orchard, Running from AS & MS
Joined: Jun 2010
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EricaK Offline OP
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Originally Posted By: Orch
Originally Posted By: Mollyc1i
Steve - MS? LDN is proven to be great for handling MS... Might give it a try! But not if on TNF as the two don't mix, but if want have a word with Dr Lawrence (who has AS, MS and has his iritis under control with the LDN for 20 yrs now...good innings.) Just a heads-up suggestion. OK?


Thanks Molly, I will ask my neurologist about it.

Steve, I printed out the pages on what diseases LDN is effective with, and some info on Dr. Bahari (sp?), and it took me 3 visits to talk my doc into trying it. It's weird that they're resistant sometimes to try things that the drug companies don't market, but the research is what finally spoke to my doc. My mobility is SO much better now than 5 months ago it's amazing. My legs never refuse to move anymore, and my balance is much better. I have three family members with MS, and the one that's taking it has had a drastic energy improvement. She's had it for 35 years, and is still on her feet. Here's the link to the pages I printed out. LDN and autoimmune diseases And here's the one for MS. LDN for MS


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Jan 2004
Posts: 9,843
Very_Addicted_to_AS_Kickin
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Orch - He's prob never heard of LDN and certainly not outside of helping drug addicts/alcoholics. Suggest checking out www.lowdosenaltrexone.org printing off relevant info and bringing with you to the consultation. There's a UK & American website. Many suffering from MS have found it very beneficial - put em into remission. Quite amazing - NO side effects either (bonus!)


MollyC1i - Riding OutAS
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Posts: 3,861
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Hahaha! Molly, great minds think alike... and evidently in unison as well eyelashes


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Jan 2008
Posts: 21,346
Very_Addicted_to_AS_Kickin
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have to echo molly and erica,

a youtube video trudi put on this forum from an MS patient on LDN was truly amazing.

when i convinced my rheumy to let me try LDN as he was balking at anything past nsaids, he had never heard of it and i was his first patient to be allowed to try it. when i reported how it helped my body clear the inflammation from it and wanted to renew my script, well, about a year after he prescribed it to me, he now prescribes it to about 3 or 4 other patients as well.

the things that helped convince my doctor:
1. the info off the sites molly and erica linked stating how safe it is.
2. abstracts off of pubmed (http://www.ncbi.nlm.nih.gov/) from the journal articles describing the clinical studies. i was looking at those regarding crohn's and other inflammatory arthritis. but here's some for MS, doctors like the scientific literature more than websites or so is my experience, though the nice thing is that the clinical studies are discussed on the LDN website(s). anyway:

http://www.ncbi.nlm.nih.gov/pubmed/19855075

http://www.ncbi.nlm.nih.gov/pubmed/20695007



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jan 2004
Posts: 9,843
Very_Addicted_to_AS_Kickin
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Good to read, learn, that Sue. Terrif. Great to have a doctor who 'listens' even though it might take a time for it to happen...'smile'.

But, as you are pro TNF drugs then you need to be cognisant of the fact that LDN and the TNF drugs do 'not' go together - they clash! aAs see from recent posts that you are v. pro the TNF drugs? TNF will nullify the LDN - you need to make your choice and stick to it. At least until you have tried it out to a trial, say, a year? Like the Strontium Citrate for Osteoporosis, IF one goes the S.C. route then TWO *years is the time it takes to show 'what' S.C. 'can' do *for one's bone density. Anytime less than the two years, forget doing it/taking it. Waste of time..

But, you are probaby cognisant of all this anyways?

Interesting post for others, though.

How's your regime Sue - think I shall be getting back to mine later this week - Yea! (Driving horses - going for a trial run at it...woo-hoo! Yep. Have me helmet, and all the gear!) Await update... smile


MollyC1i - Riding OutAS
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