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07-19-2013, 04:50 PM   #1
bluemutiny
 
Join Date: Jul 2012
Location: New Zealand
Diets & LDN

Hey All,

Little back story, I got diagnosed with Crohn's at the beginning of 2012, but of course I can trace it back to when I was a kid, it was just never back until end of 2011. I started out on the Pentasa/Budesonide route which went alright for a while but I got some weird side-effects which, for a period, pretty well immobilized me. So after loitering around here for ages, I found the Naltrexone forum, read up on Kev, started my own research, went to my GI and boom, naltrexone script!

Since going on Naltrexone (about September last year) I've been bed-ridden twice and at the moment I'm struggling with a bit of LRQ swelling and nausea.

Now I know diet has a huge play in Crohn's, and if I'm honest I'm so strict with my diet after having a whoopsie, but then a month or two later I get the 'oh i'm doing alright maybe a fast food, coffee and sugar binge is a good idea!'... and then I'm back to square one.

I'm still sceptical of LDN, not because of the drug itself but because of the pharmacy that makes it. I don't get it from Skips - I'm not in the US, and their batches can be up to 6 months old sometimes... Which isn't optimal.

So really my question is to anyone else on LDN, what is your diet vs. quality of life like when on LDN? My girlfriend has a stomach bug at the moment, so I don't know if that's the cause of my woes, or if it is infact my diet... or just a rubbish batch of LDN.

Last edited by bluemutiny; 07-19-2013 at 05:32 PM.
07-19-2013, 05:18 PM   #2
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Hi BM... oooh, I'd better not use your initials. OK, Blue... I originally continued my IBD recommended diet for years... 2 or 3 at least... after LDN did its magic simply because I was chicken. Was terrified that doing anything to rock the boat would have me back in trouble. With the passage of time, I began experimenting... long story short (odd for me) these days I eat what I like, when I like (concessions made for the recent onslaught of diabetes), and it hasn't negatively affected my IBD. Not one little bit. Now, mind you, if I eat a lot of roughphage (sp?) or green veggies, anything gassy, etc., I do pay a price... thanks to all the internal scar tissue. And, it is only common sense to eat a sensible IBD diet if you have IBD... but if/when LDN does its thing for you FOR SURE, I would guess that you could stray from a 'safe' diet without it affecting your disease at all.

My hunch. my 'gut' feeling... is that your supply of LDN is the problem. Compounded pills that are more than 100 days old lose their umph... and the disease will creep back in. In my little neck of the woods... originally the compounding pharmacies were swearing that these custom compounded pills had a shelf life of a year... and I'm guessing they got that info from the factory made, factory sealed/coated 50 mg Naltrexone pills. But, these folks are using bulk, loose powder... and either air, sunlight or temperature, or a combo of one or more of same... cause the compounded pills to go stale within 100 days
That has been my personal experience... and apparently others who use these for IBD or whatever other illnesses they are pumping them out for voiced enough complaints that all of the pharmacies here now tell patients not to use pills 6 months past compounding. Skips only does pills in 30 day batches.. voluntarilly. And these guys wrote the book on it. I firmly believe that if you got yourself a good supply of fresh pills from someplace, it would be the end of your issues. Either that, or you have the misfortune of being amid the minority of people for whom LDN doesn't work. Its a possibility, but the odds are in your favour that this latter isn't the case. I think it is a crummy supply pharmacy issue.

Now, another way to go about it is to make your own... 50mg pill in distilled water, kept refrigerated and potent for 30 days maximum. Or find yourself a good compounding pharmacy. If the group behind the FDA approval process succeed, one day 4.5mg pills will be factory made too... and this potency/stale pill issue will be a thing of the past.

Anyway, that's my take on the situation. Get good pills, and life AND diet returns to normal.
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
07-19-2013, 05:47 PM   #3
bluemutiny
 
Join Date: Jul 2012
Location: New Zealand
Hey Kev! Never noticed the correlation between the disease and my nickname before... haha. Smooth!

You actually raise an interesting point... I just got out my three most recent containers of Naltrexone and two of them were made from a late December 2012 batch, which I got in mid January and Early April respectively, however my most recent batch was compounded in February and I only just got it last week... So why was my April lot not from February too? Might need to contact them about that...

In regards to self-compounding, how do the dosages work with the whole water thing? Is there a link somewhere that explains it?

Also as a follow-up to the diet thing, my bad-things are products high in sugar, caffeine and yeast, so to what degree would that be safe for successful LDNers? I'm not sure how long you've had diabetes vs. how long you've been able to eat mostly anything you like.

Definitely keen on trying the self-compounding method though, at least I can know whether or not it's working before I get too much damage...

Oh, one more question! Is it possible because I haven't given my guts a full and proper chance to heal that the Naltrexone doesn't have a chance to perform its magic in the same way as it has for you? Or am I just pining for excuses now?
07-24-2013, 04:55 PM   #4
bluemutiny
 
Join Date: Jul 2012
Location: New Zealand
Just as a follow-up, both companies here got back to me - The one I'm currently with insisted that the compounded naltrexone should be good for even up to 3 years, and got quite defensive.

The other company is not only significantly cheaper, but they have 6 month expiry dates and can make it up fresh too (for an additional fee of course).

So I shall be changing, thanks for the help Kev!
07-25-2013, 04:11 AM   #5
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Well, I think there is a 'natural' (although wrong) belief amongst professionals that "we" layman haven't a clue, and should take everything the professionals tell us as gospel.

Thing is... we are all human.. all fallible.. and if they took their info from a standard pharmaceutical reference.. refering to factory made 50mg pills.. well, then mistakes can occur.

And, if word got out... well, then folks might stop buying their 3 year old compounds.....

I 'believe'... (and nothing to back this up except gut instinct) that many compounders are slowly adopting a 6 month (or shorter) policy with their compounds based on the feedback from the people using them. Although LDN treatment has been around for lots of years (over 5 1/2 for me) the fact that it hasn't been widely adopted/accepted has the negative effect of there not being a lot of knowledge base for professionals to draw on. I hope to be around when it becomes the 1st course of treatment by professionals.
07-27-2013, 02:08 AM   #6
Trevor
Senior Member
 
Trevor's Avatar
 
Join Date: Sep 2011
Location: Vancouver, British Columbia
My current theory with LDN and my own situation is that the more I tighten up my diet and allow things to heal and return to normal the more 'fun' I can have in the future.

I've seen a lot of evidence (from myself and through others) that almost all food intolerances can be solved.
__________________
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09-20-2013, 01:39 AM   #7
bluemutiny
 
Join Date: Jul 2012
Location: New Zealand
Hey guys

Sorry for not replying, the forums stopped sending me email notifications.

I changed company, and just got my first batch throughout the only thing I'm concerned about is they labeled it naltrexone hydrochloride - which I believe is just a generic name but I wanted to check with the experts first!

6 month expiry date just like they promised, and also nearly $100 cheaper...
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