08-09-2013, 01:42 PM   #31
Senior Member
Join Date: Feb 2012
I'm not sure about the LDN issue. I know our GI has used rifaximin, flagyl, cipro, vanco, and low dose long term pred based either on one or a few very small studies or purely on clinical experience to treat my daughter. Rifaximin for IBD is off label and there's only one study (or was at the time) backing it. Also, drs will use mtx for UC even though again there's really only one small study with limited efficacy and the Cochraine Library review concludes that it's not effective at all. I don't personally believe that what our kids are rxed is based solely on good, hard science unfortunately.
Our GI dismissed it. We got it through an integrative dr. We've tried it for extended periods twice. Didn't work but then nothing much has. I still don't see why it shouldn't be tried if other unproven or ineffective treatments (including asas for CD) are.
08-09-2013, 05:03 PM   #32
Senior Member
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Why hasn't LDN been widely adopted and accepted? Good question. I have some "gut" hunches... pet theories. First off.. there have been only 3 studies.. 2 on adults, and 1 pediatric. The 1st study was criticized for being performed on a very small group (less than 30 patients.. don't hold me to it.. I 'think' it was 27) and not being a double blind study. (I don't know if this latter complaint is fact based or not, it may be just some mud slinging).. The 2nd study upheld the findings of the 1st, and I never heard of any criticisms on sample size or other irregularities. Then, the pediatric study, with pretty much the same conclusion... safe and effective. So, the 'number' of studies to some Dr's poses a problem. Mind you, as others have noted, some meds Dr's do seem to push have little or poor scientific credendials.. either few studies or lack luster results that are also combined with some pretty severe potential side effects. Makes you wonder.
I know some doctors are too busy to do more than they currently are handling, so when a patient shows up with studies, info and suggestions.. it pretty much just gets filed away... LDN lacks an organized pharmaceutical company with deep pockets and sales reps to push it, intro it to doctors, wine N dine them, hold their hands, re-assure them, etc., etc.. Have any idea as to what lengths, what expense, these companies go to to sell their products? Years ago, when I was a young, handsome devil... I dated a lovely lady doctor. She was invited to a dinner hosted by a pharma company. I was her date. It was strictly black tie, evening gown. The company rented the Citadel (goggle the Halifax Citadel... a national historic fortress... and available for private parties if the price is right..). They served the group of local doctors who attended a 7 course meal, each food course was preceeded and followed by 2 wine courses... and these wines don't come in cardboard cartons. All imported, all expensive, and the food and beverage was free... all you had to do was sit through a 20 minute presentation on this companys brand new treatment for migraines. So, tally up in your heads what food, wine, and the setting... a fortress.. for 200 people would cost? And, although Halifax is a nice city, it is rather on the small side... try to put a dollar figure on what a larger city might rate. And, this was 1 dinner... 1 drug.. how many times before or since has that repeated???

Sure, some docs put their patients first... like mine did. Others are overly cautious. Is it their patients who their primary focus is on???? Hmmm, patient is getting worse, drugs currently being used are not working, or not working well, and they present side effects of potentially... catastrophic.. proportions. Should the doctor try this .. LDN???? Hmmm, no big company, no sales rep offering him/her dinners, freebies, support, advice. If it doesn't work.. who is the doctor going to blame??? It is off label prescribing. Some doctors fear their peers will ostracize them for going with an unorthodox drug like LDN.

I 'understand' the docs who are too busy, or just too lazy, to do the real research on it. I understand the docs who fear losing their source of referrals from conservative doctors. I understand (it may not be quite as bad here in Canada yet, but doctors here REALLY fear lawsuits.. I know their US counterparts are suit paranoid) AND if a doctor tried something.. unorthodox, experimental, on my kids.. and it didn't work.. a lawsuit would be the least of their worries... So, there are all kinds of legitimate reasons that LDN is still not front and center. It's annoying, frustrating, I 'hate' the thought of folks suffering when this potential solution is out there... but I'm OK with that. Que sera, sera.

What really grinds my gears... is when doctors deliberately obfuscate, or cloud the facts on LDN. Making comments, statements, that are not based on the actual facts/studies.
I cannot hazard a guess as to what would drive a so called 'professional' to act this way.

OK, off the soapbox...

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
08-09-2013, 05:12 PM   #33
Senior Member
Join Date: Sep 2009
fecal transplant have been shown to cure UC and also seem to cure crohns too

been studying this for about 2 years now http://www.crohnsforum.com/showthread.php?t=52400

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