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01-13-2012, 08:55 PM   #1
doctor's mom
 
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RA and LDN

Any improvement with RA while on LDN? My daughter was taking 6 mp for almost 10 years, but developed gallstones and stopped her pills. Now her RA acting up and she started infamous pred. Her GI had done a bunch of tests to check bile ducts,etc and still more to go. Just curious if any of you had similar problems. Lets have a reat weekend!
01-22-2012, 01:54 PM   #2
Kev
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Probably your best shot at learning about LDN and what it does (or might do) for RA would be the lowdosenaltrexone website. Back in 07, when I started delving into LDN, that site covered a lot of things treated with LDN. Crohn's was my focus, but since both my sister and an old college friend have MS, I was interested in the info this site offered for those with it too. I also recall the site mentioning it had been used (with lesser success rates) for those with ALS. Seems like this drug can battle a number of auto-immune dis-orders. I don't recall the specifics on MS or ALS, and I believe (rather vaguely) there was discussion on RA. I knew someone with RA, saw X-rays of the bone loss it caused as it turned the immune system loose on healthy bone. If one has both IBD and RA, you might be able to 'kill' two birds in one stone. It's certainly worth a look.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
01-22-2012, 03:32 PM   #3
D Bergy
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Dr. Burt Berkson uses LDN and Alpha lipoic acid to treat RA.

http://drberkson.com/index.html

Dan
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Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
02-04-2012, 09:03 PM   #4
Alanschachter
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LDN works for all autoimmune diseases. But since all autoimmune diseases have diet at their core, combine it with a paleo, GAPS or SCD diet for best results. Also chec out boswellia/5loxin, and curcumin bcm95.

www.crohnsdad.com
02-05-2012, 09:28 PM   #5
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Thank you very much Kev, Dan and Alan! I was " in charge" of her health when she was dx at 14. Now she is 27, and I can only suggest what I've learned from you guys. when I mentioned LDN to her, she send me this link.
http://www.sciencebasedmedicine.org/...-edge-science/
02-05-2012, 10:58 PM   #6
Alanschachter
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That article was written before Fasano published his blockbuster study that explains how all autoimmune diseases, diseases of inflammation and cancer stem from the same underlying issue http://tinyurl.com/Zonulin and before Dr. Jill Smith at penn stat published the crohns LDN double blind clinical trial. http://tinyurl.com/ldncrohns both of which I link to on www.crohnsdad.com oh and it turns out that a study done in Africa on AIDS was also published as well by Dr. Jaqueline McCandles (somewhat promising). LDN tricks the body into producing more endorphins which have a powerful impact on helping the body heal itself with virtually no side effects. It's not a cure for anything, but it is a big part of solving the puzzle of autoimmune diseases safely.
02-08-2012, 01:02 PM   #7
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That article was written before Fasano published his blockbuster study that explains how all autoimmune diseases, diseases of inflammation and cancer stem from the same underlying issue http://tinyurl.com/Zonulin and before Dr. Jill Smith at penn stat published the crohns LDN double blind clinical trial. http://tinyurl.com/ldncrohns both of which I link to on www.crohnsdad.com oh and it turns out that a study done in Africa on AIDS was also published as well by Dr. Jaqueline McCandles (somewhat promising). LDN tricks the body into producing more endorphins which have a powerful impact on helping the body heal itself with virtually no side effects. It's not a cure for anything, but it is a big part of solving the puzzle of autoimmune diseases safely.
I provided all info for her and my son (Pharm D ). Now about a diet.It's very hard to be on any diet working 70+ hours in a hospital.Some days she barely eats at all. Two months ago she got "wheeled" into ER due to dehydration, her pulse was around 200 and she's on beta blockers for AVNT again.
Good luck with your CCFA NE chapter! May be they are less ignorant and more receptive, and you don't get that " what laypeople know" attitude.
02-08-2012, 01:12 PM   #8
Alanschachter
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I never said that being on a strict diet was easy! And thanks for the support with CCFA. Sometime I wonder why I bother, but they have so much influence.
02-24-2012, 10:15 AM   #9
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I never said that being on a strict diet was easy!
I am glad it works for your daughter. Great results from her recent blood test!

Inna.
02-24-2012, 04:11 PM   #10
Kev
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I couldn't use that link, but I cropped it to get me to their home page, then searched on Naltrexone, and read their article. OK, they take issue with a site like lowdosenaltrexone stating LDN works for a litany of diseases with different 'etiology's' (sp?). I understand, as a strictly "Science" site, their stance. But did your daughter read the whole article? In it 'they' discuss how LDN could work for Crohns (aside from their long pre-amble on how 'all' studies could be erroneous). They explain the mechanics... they just stop short of saying it does work. Fact of the matter is that there have been two studies, both employed sound techniques, both concluded LDN may be useful AND safe in the treating of IBD. That led me to it, LDN literally saved my life... AND it did so at so low a risk that it was almost (not quite, there are some 'real' considerations to be made) neglible. This website your daughter linked to isn't exposing 'quack' science... just cautioning that studies MAY be flawed, and anecdotal testimonials may do more harm than good... essentially presenting a perfect example of Science 101 CYA. (Let's hope that acronym doesn't require 'they' fund a study to find out what it means). Seriously? Seriously!! LDN works for IBD (in many cases, taken in the proper dosage, etc., etc..) It MAY (I dunno) work for RA. Personally, IF I had RA, I'd prefer trying LDN for a couple of weeks VS.. I dunno... injections of heavy metal (gold) so potent that the patient has to have continous blood work to prevent it from killing them. Yet gold injections are a scientifically accepted treatment for RA. Go figure. Or is that gold figure? ohhh, I member that movie... Sean Connery as 007.. Oops, brain fart!!
02-26-2012, 06:36 PM   #11
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Yes Kev,she did! As expected, her GI haven't heard much about LDN, but got interested and asked her bring these publications . He put her back on 6mp while weening pred. Her recent blood work showed p-anca normal, but IGg was elevated. Next one is in 3 weeks.
02-26-2012, 07:14 PM   #12
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Low Dose Naltrexone Bogus or Cutting Edge Science? on science-based medicine.org if anyone wants to read. Also some of the comments very interesting.
02-26-2012, 08:24 PM   #13
Alanschachter
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Since that article was written alot has happened. Dr. Jill Smith/Penn State has published a successful double blind trial for crohns, and Stanford has just completed a successful double blind study for Fibro - http://www.medpagetoday.com/MeetingCoverage/AAPM/31371 And then there is the work of Alessio Fasano, who has published a series of peer reviewed studies that explain how all autoimmune diseases, diseases of inflammation and most cancers all share the same underlying condition of "leaky-gut" or increased intestinal permeability. (see most of them at www.crohnsdad.com) So its actually quite logical that LDN could help all of these very same diseases.
02-27-2012, 09:05 AM   #14
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Since that article was written alot has happened. Dr. Jill Smith/Penn State has published a successful double blind trial for crohns,
even though only 40 patients with active CD were on trial, and considering placebo for some the outcome is very promising.
and Stanford has just completed a successful double blind study for Fibro - [url said:
http://www.medpagetoday.com/MeetingCoverage/AAPM/31371[/url] And then there is the work of Alessio Fasano, who has published a series of peer reviewed studies that explain how all autoimmune diseases, diseases of inflammation and most cancers all share the same underlying condition of "leaky-gut" or increased intestinal permeability. (see most of them at www.crohnsdad.com) So its actually quite logical that LDN could help all of these very same diseases.
for fibro and pain for sure.

I really want her to try LDN before 6mp. I send her all links you provided with your blog as well. Believe me, it is not easy to educate a 27 year old independent " brainwashed" by medschool grad by a mother.
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