What binder does your LDN have?

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patientspiders
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Date Joined Jul 2005
Total Posts : 733
   Posted 10/9/2008 2:20 PM (GMT -7)   
Ok, so I'm REALLY excited that I finally found a doc that will let me try this stuff, but now I'm kind of on my own. I found a compounding pharmacy that will make it, but I remember reading that some people are really sensitive to the binders that they use to cut it.

For those of you using LDN, what binder have you had success with? And also, which ones have you had bad experiences/or no improvement with?

I know I need to make sure it's not the "slow release" form, but after that all I can find is Avicel as a binder which is supposed to be good.

Also, my doc rx'd 4.5mg, which I understand to be the MAX dosage per pill. What are your experiences with dosing? Did you start at the top and go down, or did you start at 3mg and go up?

Thanks guys!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/9/2008 3:59 PM (GMT -7)   
Has LDN been around long enough for a lot of experience to exist? I thought it was still in trials. Anyway, about the binders, just tell them no starches and no dairy. Cellulose (like avicel), magnesium stearate (or other stearates), gelatin and plant fiber (like psyllium) should all be fine.

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 10/9/2008 6:49 PM (GMT -7)   
No, Keeper, unfortunately LDN has been around for decades, it just hasn't been tried for ailments other than heroine addiction. There probably won't be any trials either (there was ONE at Penn State) because there isn't any pharmaceutical company with the potential of making money off of it, thus no funding for trials. I've been researching it for some time, but my GI finally went to a convention and talked to other GI's about it. He's optimistic, so I guess I will be too.

Thanks for tips! I might just specifically ask for avicel and see what they say at the pharmacy.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 10/9/2008 8:29 PM (GMT -7)   
Keep me posted on this one patientspiders.... that may be my next thing to try after I have this baby. I want to know how you do on it. My fingers and toes are crossed for you girl!

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/9/2008 8:39 PM (GMT -7)   
patientspiders, you are aware of the ldn users group, aren't you? There would be TONS of people there who could answer your question!

Also, though not as long for Crohn's, LDN has been used nearly 20 years for treatment of MS by Dr. Bahairi. At some point didn't he start using it for Crohn's as well? He just did it on his own, keeping his own records--which were very positive. Isn't that how it ultimately came to Dr. Jill Smith's attention for Crohn's? ...trying to remember what I read... eyes
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 10/10/2008 5:11 PM (GMT -7)   

There is a trial going on right now at Penn State Hershey Medical Center. I'm local here in PA and called about getting in on it but since I'm currently on remicade (really unhappy with side affects, allergic reactions, etc. but doc insists I stay on it) that pretty much disqualifies me. I am, however getting my records sent over there for a second opionion smilewinkgrin

There's a yahoo group you can join with tons of info at http://health.groups.yahoo.com/group/lowdosenaltrexone/?yguid=45016898

I am also very fortunate here in PA because there's a local MD that I had a consultation scheduled with but had to reschedule it due to this DD. I'm meeting him this week before having our records transferred and apparently he prescribes LDN, that info was through the yahoo group.

 

Miss

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