Any current members on LDN?

I am doing very very well on it. Ask away. Two hints: I suggest getting it compounded as a cream so you can easily scale up the dose.
two: scale up the dose instead of going on 4.5mg -- it'll save you the sleep issues. I love it. Changed my life. Never felt so great - even though I have to get surgery next month for a pre-existing compartmentalized hernia. It ups my chances also of a good surgery since it's totally quieted down the crohn's.

ps: cream rx: 9mg/ml 3ml each, .5 ml is 4.5 mg dose

The cream is better in my opinion, because it skips any issues in the intestines, ldn anecdotally does not work as well if you have any issues with intestinal yeasts (candida albicans) which most of us chronies are fighting all the time due to excessive antibiotic use. The cream does not cause any problems with that.

Also as far as I know - at least in my compounding pharmacy, there are no tablets, only capsules, and it's a pain in the butt to open them an guesstimate how much to empty out, and then put it back together and take it again. Trust me on that LOL. PLus with a child - it will be very easy to dose with the cream! I take both, depending on what's in the house, I vastly prefer the cream. I don't sense any difference in efficacy.

As far as dosage goes, the person you want to pay attention to is Jill Smith at Penn State, who is currently running a study on pediatric crohn's disease and LDN. If you live anywhere near Penn State, you might consider using her as your doc or at least get a referral from them.
clinicaltrials.gov/ct2/show/NCT00715117

Also, for more info on why the cream is good the work of Jacquline McCandless is well worth reading.
http://www.google.com/search?q=ldn+pediatric++jacqueline+mccandless+cream&aq=f&oq=&aqi=

If I had a kid, I'd be doing exactly what you are doing. Keep asking q's, I'll check back later and I'm sure others will chime in.

Here's the "official" ldn compounding pharmacy list page:
http://www.lowdosenaltrexone.org/index.htm#pharmlist

Most people tend to use Skips Pharmacy in Fl. He's super interested in LDN so that might be an option for you. They do a ton of mail order.

I had great luck with Olive leaf extract to combat the candida. It worked better than Nizoral and Diflucan. I still take it every day. No side effects.

best,
-janice

ps: also as I recall Jackie McCandless is in Oakland. Maybe you could call over there and ask about a compounding pharmacy in the bay area... they'd know.

I was on LDN for a 5 month period and just recently stopped. I do not want to play down LDN at all because this is the only drug out there that I have high hopes for right now. Within the months I was on it, I was almost always returning to small flares here and there but in between felt great! Now this could of been because I had a yeast build-up that was out of control and the LDN was just not touching through that or I was at a point in where my body needed something like prednisone to get out of the ditch so to speak. When I first started it I was coming off prednisone and getting over a nasty flare so if anything I thought that would of been a perfect time to introduce the LDN. I had to stop it and care to my serious flare with a round of prednisone which I am still tapering from. I can't say for sure if the LDN helped, obviously it did'nt at the time, but I still have faith it could help me someday. I was dosing myself, which is fairly easy, but I don't suggest this because even thought the med is not invasive, we are still messing with the immune response. It was when I got really bad as I was upping my dose to 4.5. I always felt good at 3.0 - 3.5 but was suggested to raise it by one dr I went to - thats when things got into a serious flare. Maybe my body was getting too much which can alter the effectiveness of the LDN and actually up your immune response rather then keep it at a modulated level.
I encourage you to try LDN for your son - you have NOTHING to lose and I pray that if you do it works wonders. Never give up on it. Try different doses, the cream, the pill, the liquid..we are all different. What works for one may or may not work for another. I have a lot faith that it can help and that this drug is one of the brightest opportunities to come to us.

My 21 year old daughter started 4.5 mg LDN a week ago today. Gets it at a Manhattan pharmacy compounded with Avicel. 

No bad reactions whatsoever, so far. No sleeplessness or vivid dreams. Nada.

Because she has been symptom free for a long time (and yet a recent colonoscopy shows active inflammation), we won't be able to tell whether it is working without some lab tests. 

yes I was so ENERGIZED too while on LDN! It was the best feeling in the world. I was getting myself in the gym every other night, going all day long, and very happy all the time. Its almost a continuous runner's high....:)

memorytheatre - Hang in there! I can only imagine the stress you are under. I was started getting symptoms at age 2 as well and not until now that I am 26 is where I am learning how much strength my parents must of needed to always keep there heads up and have faith that I would feel better each day. Now that I am taking my health in control for the first time, I am learning it is a complicated process of emotions that you go through. Its alot of work researching and learning of new possibilities that could help your son and this can easily get overwhelming. Don't forget to take time for yourself too. I know your son is probably your world right now - and thats ok- but always keep your health at bay too. The stress and worry can take a tole! Remember to breathe everyday - deep breaths. This simple thought has helped me immensily...you don't realize that you forget.

Let us know updates with the LDN -so happy that Dr McCandless responsed so quickly to you :)

Thanks janicea! I wish I could experiment more with LDN right now but I am just in too bad of a flare and have been for the last 8 months. .. I am starting Humira actually. It was officially decided today. I have such a severe case of Crohn's and I have had it for so long that the dr's feel this will really help me. Maybe if the Humira fails I can retry the LDN. By then it should be more widely accepted by the medical industry - or lets pray that it is!

Can I take Olive Leaf Extract Oil instead of the pills? I have a little vile of it and it says I can take it directly under the tongue.
Thinking this will have the same effect if not more beneficial.
My goal is to still get my yeast/bacterial growth under control. I just ate a raw garlic clove for the first time -whew! stay away!! :)

I rememember *somewhere* I read that Mccandless said in the first 2 weeks as the immune system converts from type one to type two response (this is from my one cup of coffee memory this morning) that these sorts of events are normal. I just tried to find the exact citation and could not -- however I will go look later for you. I beileve I actually read this when the same thing happened to me during the first two weeks.... youre on my to-do list for today. -j ..also for 30 bucks or whatever the cream is well worth it.. what dose is your child on?? I ended up backing off to about 3.5 and working my way back up - i had the sleep issues myself.

AH.

"Other reasons of negative responses to LDN by Dr. Jaquelyn McCandless

Re: ldn


Basically I cannot know for sure why the response to LDN would have been OK for awhile and then you got a poor response. However, there is a phenomenon that happens to some people that as the immune system is shifting (usually from T2 to T1) right after starting LDN, the immune system drops and people get an infection, cold, flu, cold sore, etc. which is usually short lived. Candida tends to overgrow or a virus will flare up. These infections are usually short-lived unless something needs treatment. As usual, I need to emphasize that seldom is LDN a stand-alone treatment, but accompanies other strategies their body needs, especially a healthy diet.
"

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=448

Yet another LDN side effect -- appetite suppression.

Thanks everyone for your support. I will post when we get started on the LDN. It is very nerve-wracking because my son has been on prednisolone for close to a year now. We are always weaning of course and have gotten him all the way off a few times but never for more than a month. At the end of that month he had to be admitted for anemia and subsequently received his fourth blood transfusion. At that point he was about 18 months old. Just this week I have really noticed his shoulders cracking when I lift him and we absolutely have to get him off the corticosteroids.

But he was flaring bad at 4mg last week so we bumped him back up to 8mg to attempt to begin the LDN without too much blood. Naturally, he is in no condition to be messing around, but we really want to try a non-immunosuppressant intervention before going to Remicade. Best of luck to everyone.