Alternatives, aren't they worth a try?

I think its safe to say that this board is mostly used by UCers with struggles.  That said, most here probably don't have "mild" disease.  If so, they would be on asacol forever and go about their life without issues.  Instead, I see mostly struggles and desperation.    

Thank God for the internet.  We now are able to see other UC treatment options that have been studied and used elsewhere with great success.  These are things we wouldn't hear about from our GI since they are not part of their protocol.   

Fecal transplant:  50%+ success rate for UC. (90% for cdiff).

LDN:  65% UC success rate. 

Diet:  Adjunctive therapy at least.

Many more:  Let us know what's worked for you.  

Like any treatment, you must follow proper protocols.  When I say "success", I'm referring to long term remission.  You might not have success, you may have with still needing some meds, who knows.....but isn't it worth a try?             

CONGRATS to you InSoFla....I'm so happy for you. Your living proof of thinking outside the box to save your colon. GI's won't/can't prescribe alternatives. They run through their list of FDA drugs and then onto surgery....its a real shame.

LDN transdermal is the next move for us if needed. Thanks for sharing and enjoy feeling well. Keep us posted!

Thanks LivingAgain,

We do use supplements. Healthy diet, probiotics, mult-vitamin, etc. We are going to experiment with wild oregano oil the next time he gets strep....I guess it is just as effective as abx, but used as a gargle.

Don't forget acupuncture. I've had some success with that to go into remission.

I apologize if I asked this already but why is LDN so taboo? No doctor ever mentioned it to me. I tried everything (even acupuncture) before having surgery and nothing worked but I never heard of LDN until after my surgery and came on here to tell my surgery success story. If I had known about it, I probably would have tried it. If it works so well, why isn't it known and why don't doctors tell patients about it??

MustLoveDogs said...
Trojan
Our GI didn't recommend any alternatives, but he didn't put us down for wanting to try acupuncure, gluten free diet, among other things. I feel the MD's get a bad rap for prescribing drugs and surgery, but that's what they are supposed to do!

Well my doc is a good doc but he did refer to my alternate therapies as 'pi$$ing in the wind'

He was very flexible and accepted changing all my meds in the middle of a bad flare when prednisone was not working.

I disagree about what Doctors are supposed to do. Not sure were you sourced that, there is a credo to do no harm and otherwise try to heal the patient and restore good health. The western system rewards Doctors for using meds and surgery. There is no incentive other than good intentions to restore health when it comes to alternative therapy.

ByeBye, I think it's because GIs aren't trained in providing LDN. There is not thorough testing to prove that it can be used for UC and many don't want to take on liability of prescribing medication that isn't FDA approved for the treatment of a particular illness. I personally think there are a lot of reasons. One possibility may be that there isn't a lot of money to be made in LDN as it is generic and inexpensive. Pharamceutical companies may not want to back studies to test the effectiveness because they don't see a chance of it making them a lot of money? I hate to say that because it sounds like I am some kind of conspiracy theorist, but really, what corporation would fund those trials when it wouldn't generate profit? Think about how much money they make off of brand name, new products like Humira, Remicade... Why doesn't someone like CCFA fund a trial? I would think because they make money for working with pharma. I am not sure. This is all speculation. It may just be that LDN is not that effective for UC but I don't see how that can be proven when I've seen many people have great luck with it here and there is no large scale study to prove otherwise.

notsosicklygirl said...
ByeBye, I think it's because GIs aren't trained in providing LDN. There is not thorough testing to prove that it can be used for UC and many don't want to take on liability of prescribing medication that isn't FDA approved for the treatment of a particular illness. I personally think there are a lot of reasons. One possibility may be that there isn't a lot of money to be made in LDN as it is generic and inexpensive. Pharamceutical companies may not want to back studies to test the effectiveness because they don't see a chance of it making them a lot of money? I hate to say that because it sounds like I am some kind of conspiracy theorist, but really, what corporation would fund those trials when it wouldn't generate profit? Think about how much money they make off of brand name, new products like Humira, Remicade... Why doesn't someone like CCFA fund a trial? I would think because they make money for working with pharma. I am not sure. This is all speculation. It may just be that LDN is not that effective for UC but I don't see how that can be proven when I've seen many people have great luck with it here and there is no large scale study to prove otherwise.

 

LDN and other alternate medication have not proven to be effective on a wide scale. Like you said there is no trials. I could very well say I drink windex every night in small quantity and it keeps me in remission. And let's say it would, never mind the effects of drinking windex. Who is going to believe this. Heck, there's a post yesterday of the guy here taking an anti depressant pill to stay in UC remission. I mean, there's probably a sh... load of other weird medicine that induces remission for someone somewhere. You can't expect FDA or a GI to approve every weirdness that comes around.

 

Thank you all for the replies. I just never knew about LDN. Very interesting. Just like all the other drugs, it's not one size fits all so people really have to try everything they are willing to try. I still thank God everyday for my jpouch surgery. Hey, whatever works for someone... that is the important thing here with this awful disease.

byebyeUC said...
I apologize if I asked this already but why is LDN so taboo? No doctor ever mentioned it to me. I tried everything (even acupuncture) before having surgery and nothing worked but I never heard of LDN until after my surgery...
If it works so well, why isn't it known and why don't doctors tell patients about it??

Somedude said...
LDN and other alternate medication have not proven to be effective on a wide scale. Like you said there is no trials. I could very well say I drink windex every night in small quantity and it keeps me in remission. And let's say it would, never mind the effects of drinking windex. Who is going to believe this. Heck, there's a post yesterday of the guy here taking an anti depressant pill to stay in UC remission. I mean, there's probably a sh... load of other weird medicine that induces remission for someone somewhere. You can't expect FDA or a GI to approve every weirdness that comes around.

www.lowdosenaltrexone.org/gazorpa/History.html
Naltrexone in substantially lower doses (Low Dose Naltrexone) is showing great promise as a treatment for multiple sclerosis, Crohn’s disease, AIDS, rheumatoid arthritis, celiac disease, CFIDS, lupus, and certain forms of cancer.

Unfortunately, obtaining FDA approval for LDN will not be a straightforward process. Since naltrexone is now a generic drug, no pharmaceutical company currently holds exclusive manufacturing rights. No company is eager to fund an expensive clinical trial for a drug that will make them so little profit.

However, even without governmental approval or corporate support, LDN is gaining significant grass-roots attention among patients and doctors. The exchange of research information over the internet has greatly accelerated the recognition of the off-label use of LDN.

MustLoveDogs said...
A physician who offers his/her patient steroids, remicade, etc IS doing what they feel to be the best treatment. Going to an MD and expecting them to be informed about how acupuncture can help UC, is like going to an acupuncturist and expecting them to prescribed antibiotics.

To someone trained in Western medicine, why wouldn't they think alternative therapies are 'pissing in the wind' when they have no training in those therapies? If they did, they wouldn't be MD's..they would be alternative practitioners!

I never said anything about acupuncture you mentioned acupuncture. Your also dumbing it down until its a simple black/white issue. So I am teaching someone how to fly a land-based aircraft with my Certified Flight Instructor license and they have another home on a lake but because I don't have a seaplane license myself I should never mention that they might want to consider getting rated for a seaplane and even buying one because it is a far far better solution for them. Of course that is not professional.

I kinda figure Doctors are smart and I also expect that they have high morals and standards and are not BLIND to alternative therapies. Maybe your confusing training doctors with training dogs. A doctor should see the entire field of vision and think for himself because the goal is to improve your health the goal is not to promote high cost healthcare.

If doctors think like you then they would never advance beyond their 'training'. I believe they are practicing medicine and like a license to fly its a license to learn. i.e. they should be participating in ongoing continuing education.

i am not sure why LDN is considered alternative therapy. it is still a drug that you will probably have to be on for a while. i don't see any less risk taking that than i do with the drugs i am on now.

when i think of alternative therapies, i think of holistic approaches. i would definitely try them before any conventional medicine. i did, but it didn't help me. not everyone can be helped with just herbs and diet unfortunately. if this disease were that easy, most of us wouldn't be on medications.

insofla, no i haven't. my doctors haven't heard of it before and the naturopaths i saw strictly wanted to do herbal remedies and homeopathy.