Share Facebook


11-06-2015, 12:21 AM   #1
bluemutiny
 
Join Date: Jul 2012
Location: New Zealand
LDN So Far

I've been on LDN and only LDN for just over three years now. It's been a bit of a bumpy ride but I'm fairly confident in saying that LDN isn't a wonder drug, you have to work for it.

The biggest positive to me is that I've been able to avoid immunosuppressants etc - I'm still able to bake in the hot sun and get as many infections as I like - I work on a farm and have a brown girlfriend so infections and tanning (to try and beat her, never works!) are at the very top of my life list.

I do think Naltrexone does something - I'm not sure what. There have been three times it has blatantly stopped working:

1) The first compounding company I tried wasn't mixing it right - I switched after 6 months and it worked properly. However an old batch no matter how well the compound doesn't work efficiently either and as such a bad 3-month batch can make a lot of difference come the end of it;
2) I came of the pharmacologically compounded one and tried to make it at home to save a lot of money - Did not work, slipped right back into the dark grip of Crohn's and got colds and flu almost constantly. Eventually switched back to normal compounded version, came right, no issues.
3) Earlier this year my gut/body trashing was at breaking point - I was having almost nothing but junk food, upwards of 5 cups of strong coffee a day, spicy food hot enough to make me sweat and so on. This, mixed with an increase in stress (several family deaths and other family health issues), brought on my worst flare since being diagnosed. I was then put on a course of Budesonide (which I hate, I can't stress how much I hate it, it immobilises me and I pass out constantly), during which time my whole immune system just crashed and I got sick constantly again.

It's not a set-and-forget drug. If you don't get the timing of taking it right, or you have a night out (I'm still young...ish, gotta live it up!), then the suffering comes flooding back. After being on it for such a long time, I can basically tell by my 3am pee whether or not I'm going to have a good day.

Diet counts for a lot too, it's not a miracle drug even though some websites and people swear it is... It isn't and simply can't be. You need to exercise, you need to sleep well, you need to eat healthy. If you do all that AND take Naltrexone, you can live a happy life no doubt.

I have read a lot about it not working for teenagers and also read it stopped working for Kev. I'm not a teenager and haven't been a teenager for some time, however I remember my teenage years and they were not full of good night sleeps, healthy eating or little stress. To me that, mixed with my experiences of Naltrexone, go some way to explaining why it seems to have little success for teens.

As far as Kev goes (and where has Kev gone?), from what I remember he stopped smoking and eventually went into an enormous flare and then disappeared. He was having sleep issues from quitting smoking, ear aches, work stress, the lot. Naltrexone works when you sleep.

Another way to kind-of prove this is sleeping pills. Take Zopiclone as an example, it's not something that makes you sleep properly, you just don't realise you're awake. I've left the house after taking Zopiclone, without knowing it until the next day, this example being the mild end of the spectrum - So not a great drug. Regardless, for a week after taking even one, my guts go into "what are you doing???" mode and I suffer.

So I say this from experience and not from any scientific standpoint, but if you're in a position where you can't eat healthily, you can't sleep efficiently and consistently and you can't exercise, don't bother even trying LDN, you'll probably do yourself more harm than good.

Given the option, I would, 100%, change to a new drug with fewer side-effects than Budesonide and immunosuppressants. LDN is a means to an end for me, it works enough to keep me stable, provided I work with it, but I'm human and young and don't always do that. Realistically it's not something I see myself on in 5 years time.

Addendum: I was once talking to Kev and he said his diet wasn't great, however he couldn't eat sugar due to diabetes. This may be why he had such success; sugar can really stuff my guts up even if I've been good with everything else.

Addendum 2: Just to make it clear, it's not just having a good diet etc making the Naltrexone look like it works. If I come off it and am healthy, I'll flare, plus it's kept the flares away even when I eat like a starved pig.
11-06-2015, 09:23 PM   #2
irishgal
Senior Member
 
irishgal's Avatar
 
Join Date: May 2015

My Support Groups:
Thanks for interesting post and for sharing your experiences. I am also on LDN, but take it as a compliment to AntiMAP therapy. Dr. Chamberlin was the first one who helped me with AntiMAP, and both he and my integrative health MD Recommended LDN for Crohn's. Dr. Chamberlin mentioned he has seen a few AMAT patients try it with fabulous success. I think I have an educated guess why it works, since you mentioned that above.

Crohn's is a disease of innate immune deficiency. Basically, our Th1 immunity is off and this causes issues with clearing intracellular infections. Enter "Son of MAP" which is a version of MAP which sheds it's cell wall in humans and infects circulating monocytes/macrophages. This is the exact type of infection a Crohn's patient has trouble clearing. So when I went on AMAT, it basically killed a lot of the Son of MAP, making me feel pretty great, but then I had too many side effects to continue with the levofloxicin so I had to drop it.

Now, I know from doing a LOT of reading that AMAT works best with three antibiotics, but I was down to two. I though while I searched for a way to get clofazimine, I'd go on LDN to try to modulate my innate immunity. It's been a year and so far, so good! It's like I don't have Crohn's. I usually eat pretty healthy, but if I eat too much junk food I feel a little icky. I experienced bad headaches for a few days when I switched compounding pharmacies and had some really vivid dreams in the beginning! Luckily no nighmares.

If you're ever interested, you should look up John Aitken. Great guy studying Crohn's microbiology and has some amazing stuff in the works. If nothing else, he could test you for Son of MAP. He's in Christchurch. Wish I was that close!! Best of luck to you nd glad the LDN is working as a stand alone treatment.
__________________
Currently on: Anti-MAP therapy and loving life! Full remission since Jan 2015. Clarithromycin, rifampin and low dose naltrexone. (Levofloxicin had too many side effects so discontinued after 5 months.) Resources on human MAP and Crohn's here: HumanPara.org.

Past (failed) Treatments: Remicade, Humira, Prednisone, Pentasa, Azulfadine, Lialda, No gluten/dairy/sugar/coffee or processed food in general. Flagyl worked but not long term.
Reply

Thread Tools


All times are GMT -5. The time now is 01:38 AM.
Copyright 2006-2017 Crohnsforum.com