Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group LDN - Low Dose Naltrexone Works for Jon

Hey all, I wasn't sure if I should post this here or in the AS Pharmacy.....

As you may know my hubby Jon has had AS since late 2003 and it was really agressive. He started the No Starch Diet in June 2004 and ended up achieving remission of his AS symptoms.

However, since last winter we have found most vegies and fruit have turned starchy here in New Zealand for some reason...don't have a clue why. Stuff that Jon could previously eat by the truckload and which always tested negative for starch now tested postive eg cabbage. And Jon went downhill as a result as it took us a while to figure it out and we have been struggling to get him back on track ever since. I think it put him back by about 2 years progress. His diet became ridiculously restrictive since mid 2008.

So I started Jon on LDN a couple of months ago. I even managed to get the capsules compounded to be starch free. He only agreed to try it as it seems so safe...he is very scared of side effects on most arthritis meds and just wont take them.

He started on 3mg and within 2 days his swollen feet & ankles which had been bothering him all winter cleared up. I didn't believe him...said it can't be...must be a placebo so he proved it by RUNNING around the lounge doing ballet leaps! hehehe

He started on 4.5mg about a month ago and all I can say is WOW! He is still on the NSD but no longer has to be as ridiculously strict as he had been before. Still no grains or obvious starches in his diet but he can eat a lot more fruit and vegies and can now tolerate dairy. For the first time in 5 years he had ice cream last night. I think I saw a tear in his eye, hehehe.

When he does eat something a little bit starchy he will still get sore but nowhere near the kind of reaction he used to get and it's almost like the LDN wipes the slate clean overnight as he usually wakes up the next day feeling fine again. He recovers very quickly now. He has NO side effects from the LDN either.

Just wanted to let you all know.....once again KickAS has provided the solution for Jon...first and continuing NSD and now LDN. Also a big thanks to Bridget as I've been watching her progress on LDN the last couple of years....cautiously watching to see if it was worth a crack.

KickAS YOU ARE AWESOME!! THANK YOU SO MUCH

So glad to hear it!!

Wow Chelsea,

Its good to know better results coming in with LDN for AS. After all the diet discipline that you and your hubby have followed all these years, it sounds like poetic justice.

I tried LDN (not the best way as prescribed) and did not have good results. Here none of the pharmacies are ready for prepare LDN for me.

I hope LDN gets more attention from the medical community for the treatment of AS.

Ankush

WOOHOO!!! I'm so glad he is able to *gasp* DANCE!! And eat ice cream! Finally, it seems he has a little more freedom.

That is so great to hear. Congratulations. I haven't really told anyone, but I am 2 weeks in to my own LDN treatment. I was at 1.5 mgs for a week then 2 for half a week, then 3mgs starting last night. I must say. I have had some IBD problems last week. It almost seems like the LDN did it and am somewhat scared. What else can I expect from my backward a#%. Everything I ever do or everything that happens to me turns out backwards or in the 1% category. Haha. I will do a full report in a month.

Adam

glad to hear that the LDN seems to be working so well for him.

i too have been on LDN, for the last 3 months.

as far as i can tell, no obvious side effects, that's good.

i don't think it does anything in preventing the inflammation from occurring for me, however, i think it may help my body get rid of it a little faster. i think i recover a little better. but i still need something that prevents the inflammation from occurring in the first place.

That's awesome news Kiwi! Thanks for sharing the positivity.

Wow Chelsea! That's terrific news! I am sooo happy for you both.

And I think you should get major kudos, applause and extra bonus points for being the incredibly supportive ASKickin' spouse that you are!

Love it!

Yea, Chelsea. Terrific good news. Well done you and that man o'yours. Soooo very glad it is working - best news ever. You musr add the story to the LDN forum group...inspire others to try LDN. Did you read the LDN newsletter I posted a couple of day ago?

The best of evrything on the LDN - yes, I continue to bless Bridget for posting of it in the first place. YEA!