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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Norvegian document on LDN


08-22-2013, 04:33 AM   #1
Malgrave
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Norvegian document on LDN

http://www.tv2.no/play/nyheter/unkno...ts-717059.html
08-22-2013, 04:30 PM   #2
Kev
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WOW!!!!! And here I thought "I" was a groundbreaker. Some of those folks have been on it 10, 11 years. And, the cancer survivor.. only given 26 months to live, there she is 9 years later. And, that wonderful pill maker in Norway... makes all kinds of them, factory fresh... and the shortage is the number of patients who can get a prescription. For what? A drug, in such a low dosage, that a doctor who has placed 100's of patients on it states he considers it safe... safer than ordinary aspirin. Big pharma WANTS, no.. NEEDS LDN kept a secret. It would lose billions if people started switching over to it. So, is big pharma keeping the doctors in the dark, or merely keeping them in check? I love that website that compared the safety of drugs... the traditional meds scored so bad, and LDN scored so high. I wish I knew where the documentary producers got their info on it saving 100,000. If that number is anywhere close to being accurate, factual.. it really illustrates... the potential good this drug can do.. and sadly, how many people suffer because they just don't know about it. If you are thinking about what your next drug should be... you really ought to look at this link... muddle thru the sub-titles, and see that this drug isn't.. snake oil, it isn't a placebo.. it is a legitimate drug that for just purely financial reasons is being kept under wraps, and it may be just the drug you need.
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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
11-16-2013, 12:31 AM   #3
Queastor
 
Join Date: Mar 2010
Location: Davenport, Iowa
I'm not convinced that LDN is forcibly being kept a secret.

It's hard to convince people of the value of a drug that increases immune system function when it's such a common alternative medicine argument for
taking Vitamins,
elemental iodine,
magnet therapy,
Colloidal silver,
Fruit smoothies+working out,
chi healing,
acupuncture,
cat's claw(any herbal remedy really),
green tea, ginsing,
eating a low carb diet,
eating a low fat diet,
eating garlic,
eating peppers,
eating onions,
eating carrots,
eating honey.

There's no billion dollar research study.

AND all the thing's it treats can randomly get better in people (autoimmune diseases of all sorts can randomly go into remission) and it can take a year to take effect instead of having a fast effect.

It's hard to believe in without research. My parent's aren't convinced.

Nice video BTW
11-16-2013, 09:02 AM   #4
Kev
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I didn't say it was forcibly being kept a secret. What I was saying (or attempting to) is that because there is no big pharmaceutical company anticipating a big windfall, there is no one promoting this as a treatment. And that is a shame, actually a tragedy of sorts. There have been 3 studies in using LDN to treat Crohns alone... not to mention the studies of it for other diseases. And yet it is virtually unheard of. Why do people think or say there have been no studies? Why are doctors usually the 'last' to hear about LDN?

Well, because for one, there isn't a pharmaceutical marketing rep with an expense account visiting doctors, providing free samples, pamphlets glorifying the studies, even taking them to fancy dinners (I went to one... 7 course meal, with 2 different wines with every course.... the pharmaceutical company rented a fortress for the occasion. BIG$$$)

When people who could benefit from LDN HAVE to find out about it themselves.. that's wrong! If, on the other hand, they do learn about it, and are leery simply because so far it has not gained acceptance, or hasn't completed FDA Phase III trials, that is simply being cautious. But, if anyone with a vested interest in suppressing info re LDN is doing so just to promote their own product, agenda, etc... then that should be... well, illegal.
11-18-2013, 11:47 AM   #5
Wendy M
 
Join Date: May 2013
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I have had this disease for over 23 years and haven't heard of too many people randomly going into remission, perhaps it happens but very rarely. We are all looking for ANYTHING that will help. LDN is an actual viable drug, not just some type of alternative product, not that I haven't or wouldn't try almost anything to feel normal again. And although waiting for the LDN to work is hard I have been waiting years for them to come up with something that would work. It would have been nice if my doctor had heard about LDN and I could have tried it at the beginning.
11-18-2013, 08:00 PM   #6
Kev
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I recall something my GI said at the time about LDN. She was dubious it was going to do me any good... but she was fairly certain it wouldn't do me any harm (I think she voiced this more for her own peace of mind than anything else). And, taken at pure face value, she was right. It is point of view echoed by that doctor in Dublin who has been prescribing it for a decade now. As he put it, taking LDN is safer than taking an aspirin.

BUT... ceasing all other IBD meds and going with LDN solo does carry a fairly big risk. You probably should expect your symptoms to rebound... flare up.. go into a rampage of sorts... before enough time has passed to allow LDN to gradually kick in and do its stuff.

That is the rough part of LDN. Toughing it out.. getting through that initial rough patch.
11-18-2013, 11:24 PM   #7
Searchingforhealth
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Kev, I don't understand why LDN would cause a patient to flare. Do you understand the science behind this? It is not an option for my daughter to have another flare, since she is finally regaining her weight and energy from the last 10 day stint in the hospital. She was in a bad place, probably the c-dif was the reason for this flare, but before it we had finally lowered her pred dose to 10 mg and had started taking LDN for a few weeks. I am afraid to start her on it again as she lowers her pred dose this time. If she flares this time I can't blame the LDN and we will consider a FMT.
11-19-2013, 05:02 AM   #8
Kev
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Well, LDN itself does not directly cause a flare... the typical scenario goes something like this. A person is on typical meds for IBD... usually they suppress symptoms by suppressing the immune system. They opt to switch to LDN, which usually means coming off the meds they were on.... Well, coming off those WHILE waiting for the slow build up of LDN to do its thing... THAT is what typically results in the patient flaring.
11-19-2013, 08:13 AM   #9
cannynancy
 
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How long, on average, does the flare last before the LDN starts to work? I am only on Apriso (which I would stay on while starting LDN) and currently feeling almost normal . Does that mean I am less likely to flare when starting LDN since I would not have to stop my meds?
11-19-2013, 05:50 PM   #10
Kev
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There is no answer to that question... it's like asking... How hot were the flames that burnt your house down? Wait, your house didn't burn down... OK, sorry, being facetious. How much any individual may flare depends solely on them, their health, the 'strain' their disease... is it aggressive, is it placid...

Some folks will flare regardless of what meds they take... the idiosyncrasies of this disease are too unpredictable to even attempt to guess at. You know what I mean?
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