Ldn

[katiesue1506]

GUYS! I went in today and asked my doctor to start LDN (complete with manila folder and highlighted printouts of pertinent info). I completely thought he'd say no and that there wasn't enough info for it.

There he was... perusing my information, asking me about my symptoms... you know... doc stuff. And he said "Wow, you seem to have everything together here and so nicely organized."

ANYWAYS... long story short... he's going to prescribe it for me! And I didn't even have to sign a hold harmless form. I'm so excited! I can't wait to start the LDN. I'm getting mine from The Compounder in Aurora, IL and he said he needs a week to start everything, but it'll be sent out and right to me soon.

My questions are for you other LDN users (Kev, dbergy)... is there anything I should know before I use the LDN... is there anything I should look out for? Should I start on the 4.5mg or something lower? I would appreciate any help!

 

[BWS1982]

congrats again....seems due to your own presentation of info more than anything....

Aurora, btw, home of Wayne's World (stupid trivia, every time I hear about that city).

I would guess the doc's okay with it also perhaps due to it being so "innocuous" in terms of sides. I hope that if I have to do what you did, it'd work out as advantageously.

 

[My Butt Hurts]

Wow! Congrats! I hope it works for you. It will be nice to have a 3rd viewpoint on this since some of us might need to take something else in the future. (I thought your Humira was working for you before you had to stop due to antibiotics. Why not just stay on that if it was working? Just curious.)

Good luck!!

 

[katiesue1506]

Humira was working and I had just stopped it due to antibiotics and I've been off the Humira since March. I decided not to take any meds at all until I had my wisdom teeth pulled and was healed from that because I didn't want my immune system to be all whacked out during that process. I had my wisdom teeth pulled 3 weeks ago and so I figured I should go back on some type of med so that I'm maintaining my quality of life. I could definitely tell that I wasn't taking any meds... but my symptoms aren't horrible.

So... while I wasn't on any meds I learned a lot about LDN. It's cheaper than Humira, I get to have a healthy immune system, its oral, there are virtually no side effects, and it has no warnings of things like cancers.

I just decided I wanted to try something new because I think it could be a great thing. Plus, at this point, I'm not super ill, so it isn't a risk to me to try it. Humira worked for me, but I was tired of the random colds and the injection sight reactions. I was also tired of it running out 4 days before my next injection.

So in a nutshell, that's why I've decided to try it. If it works for me I've decided I'll become a strong advocate for it.

Thanks for being happy for me guys... I think its a bit difficult for the people around me to do so because they don't quite understand the large feat it is to get a doc to prescribe off-label.

 

[Jeff D.]

Let us know about how you do on it. I may be presenting something similar to my GI if my next remicade cycle doesn't go well.

 

[AbstractDonut]

Well I have taken LDN, though in the clandestine manner of ordering it from India. I think it does help, though slowly, and I do not believe you can go hog wild with the diet like you could on a slew of prednisone.

When I was taking it I remember the first week I didn't notice much of a difference. Then it seemed like my problems would go and come back, instead of the constant slow march to cramps and obstruction.

Take what I say with a grain of salt though I did it in the most uncontrolled manner possible. I do know in the height of about 8 weeks in I was eating Arby's melts everyday... Probably not the smartest move in retrospect.

Very odd, I would get pain in my lower right quadrant, but I would never get cramps once I got into about my third week. The pain in the side would come and go seemingly on a daily basis. And like I said I was eating pretty bad, ice cream, chocolate milk.

 

[Kev]

Hey Katiesue.. Congrats from me.. and keeping my fingers crossed. My take on it is that it resets the faulty immune response... but only while your taking it.. means (until they test it further, proving my 'guess' wrong) you'll probably have to continue taking it ad nauseum. But, to me that like the prospect of being a diabetic having to take insulin for the rest of their lives, only LDN has much less in the way of potential 'sides'. Anyway, with the reset of the faulty immune response, our bodies start to deal with the bad bugs at the root of this... basically starting a slow healing/fighting process. So, mind your P's N Q's, don't go eating crazy, expect that there will be days when its 3 steps forward, 2 steps back. The disease may rear its ugly head from time to time... flare up. Akin to occasionally catching a bad cold despite being otherwise healthy. So, it might take 6, 8 or 12 wks before you start feeling great, and you might have bouts where things get crazy... That's pretty much been my experience so far, and I LOVE IT!!

ALL THE BEST

 

[katiesue1506]

Thanks! I'm starting it in the midst of a calm as far as flaring goes. I've been flaring a bit lately... but a really really tiny bit. So I'm hoping I won't have too many steps back... because that would mean I would have to get worse whilst on it.

I'm wondering whether or not it just fixes the immune system. I mean it may be that Crohn's is due to an over active immune system... but since the LDN shuts off your endorphin receptors for a few hours, the body has to readjust and make the proper amount of endorphins to reboost the immune system. Therefore kinda just making a complete "redo" everyday for your immune system. Kinda like defraging the drives on your computer every so often... it resets everything where it should be and makes things run more smoothly.

I could be way off... but then no one really knows how it works, do they?

 

[Kev]

I think it's typically not a 'one dose' fixes all... Think our situation is like having a faulty circuit breaker... keeps tripping off on us. LDN resets it, but only for a while. Now, maybe... after reseting every day (nite, actually) there could be a chance that it will hold in the reset position, but I wouldn't hold my breath. And, like at a $1 a day with no sides, why take that chance? Really?

 

[D Bergy]

Congratulations!

That was about as easy as it gets.

My only advice is do not expect any kind of permanent result until several months have gone by.

It seems quite common for it to help and then a period of back sliding, then it starts helping again. It seems to work this way for other diseases as well.

I have no problems at all any more. Hopefully it will stay that way, but I am under a good load of stress lately due to business stuff, and bulding a house.

I have very limited internet access for the summer so if you do not hear from me, that is why.

Good Luck, and keep us posted.

Dan

 

[karl]

congrats, i'm thinking of asking my GI if AZA doesn't work. i really can't afford remicade.

sorry thread hi-jack,
i have a couple question for anyone who has been on LDN for a while, how long have you been on it and how have your symptoms been? also, what is your diet like, restricted? do you get regular blood tests?
i'm wondering if LDN is suitable as a long term maintenance drug

 

[Kev]

Well, my experience has been that it slowly, drastically improved my symptoms. I have been able to work a 5 day week, tho split shifts, 3 hours on, 4 hours off, 2 hours on.. without problems. I have had a few mini flares.. mostly due to my playing with my 5 ASA and a great deal of personal stress. I am taking 4g of 5 ASA with (just to be cautious due to other issues going on) and I stick to my diet.. again, just to be cautious. I have no fears of long term issues with Naltrexone at these ultra low doses. I think insulin to a diabetic poses far more serious side effect issues, and in the realm of IBD drugs, there is nothing on the market as safe as LDN. The downside is that it takes weeks to kick in, and you heal yourself fairly slow. But, on the upside, you are healing yourself.. you aren't suppressing your immune system or blocking your TNFs. If you stop to consider it from that point of view, it makes a lot of common sense, something all too rare with this disease.

 

[D Bergy]

I have been on LDN for about six months. I eliminated my symptoms prior to using it so my experience is different than normal.

My opinion is that LDN is likely the only treatment that is well suited for long term use. While no one has used it for more than a few years, it is not known to stop working for most people.

Since you are only under its influence for a few hours, I do not think your body is likely to develope a resistance to it. Of course, this is just my speculation, and it could be wrong. I do think it is more likely to work long term than a drug that is constantly present in your body. The human body does not seem to like to cooperate with an ever present drug influence.

Dan

 

[butt-eze]

What is wrong with blocking your TNFs? I like to know exactly what medications do so that I feel informed before I start them. I plan on starting Humira next.

 

[Kev]

Well, as to whats wrong with the TNF blockers, just examine the downside posts on Humira or Remicade.. I haven't tried it personally, so I won't comment on any of those. The reason I haven't is that I simply can't afford either. That's one I have experienced first hand. A med isn't of much benefit if you can't afford it.

 

[BWS1982]

Well fatal lymphoma is the biggest thing "wrong" with TNF blockers IMO, among other risks...there's a current thread in the treatment section on this.

Basically Humira and Remicade and the likes handicap your immune system, a la Imuran.


Also, Dan, I could be wrong too, but I think Remicade "has an influence" for more than the few hours of infusion. It circulates throughout the body for weeks at a time before finally diluting and being filtered out. I think....

 

[Kev]

Yeah, check out the FDA report thread on TNF blockers. Isn't looking good Lucy. And a big thanx to Mazen (I believe) for posting it. Another great piece of info.. way to go, M!

 

[Jeff D.]

Yeah I think I'm going to be asking my GI soon about LDN. Much better than Remicade at least with side effects.

 

[Mazen]

Hi Kev. Mazen, not Maven Anyway I hope this LDN gets FDA approval and then we can have a safe drug without all those disastorous side effects....

 

[Kev]

Sorry about that Maven.. Chief, would you believe I missed it by that much?

(and those who don't get that, check out the 'Get Smart' movie starring Steve Carell.. or whoever... or the original series in re-runs starring Don Adams... way funnier tho very 'dated' by todays standards. Back then, the concept of a cordless phone buried inside a shoe brought hails of laughter.. who knew?)

Anyone contemplating waiting for FDA approval on the LDN treatment is in for a long wait (I think). Its' available as a generic now, so it is off patent protection... and at a cost of about a buck a day, no pharmaceutical will underwrite tests to get; may not even bother attempting, pproval. I don't know if the FDA would approve it otherwise; like.. can anyone other than the company that makes it even apply? There might be a way, it may happen... doesn't really matter if it doesn't. Off label prescribing is totally legal. Doctors are sheep... soon as a noticeable bunch of them start using it, the rest should follow suit. Otherwise, patients who want will migrate to docs who will. Supply N demand, marketplace factors, should make it occur.

 

[Kev]

Yeah, I should update my own LDN diary. OK, the LDN works. I had gone thru a lot of emotional turmoil, and till it was resolved, I slipped. The stress started to get to me... the ONLY thing that kept me out of the hospital had to be the LDN. Honestly. I have had a few hiccups... I played with my 5 ASA in midst of major upheaval in my life, and I suffered for it. My day to day life at the mo is no picnic.., and I'm not as good as I was before all this started. BUT.. If I weren't on LDN and had undergone 1/10th of what I am recently went thru..., welll, I'd have been in the hospital. The fact that I am working, and taking care of business, all of that rests on the fact LDN is keeping my disease from flaring uncontrollably... And I've been on it for 3/4 of a year now... My, how the time flies when you're not having fun. Sheesh