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To all chronies...Why have you not tried LDN ( Low dose Naltrexone)?

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Crohn's Disease
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Posted 6/4/2008 5:37 AM (GMT 0)

From what I've seen posted here, some people have benefited initially from LDN, only to have it peter out later.

I haven't seen hard evidence that it has staying power, even when it does work.

Posted 6/4/2008 8:54 AM (GMT 0)
I tried it, did not work for me. Gave me horrible side effects.
Posted 6/4/2008 8:56 AM (GMT 0)
What happened, Carmen?
Posted 6/4/2008 3:48 PM (GMT 0)

Carmen, I'd like to hear what side effects you had while on LDN.  Also, how long were you on it and at what dose?  Thanks!

Posted 6/4/2008 11:26 PM (GMT 0)
It was 4.5mg every evening.  I was very dizzy on it, nauseous and had horrible dreams...

I tried it in nov. of 2006.

Thanks

Carmen

Posted 6/6/2008 3:34 PM (GMT 0)
Thank you for that post, Patti! I am thankful there are still a couple of you left here who are willing to share your incredible results with LDN!

One other thing I've gleaned from what little I've researched and read is that some people are having great success with an even lower dose than 4.5 mg. Young children are even being helped with an LDN cream. Dr. McCandless' posts about her young children are truly AMAZING! I get choked up when I read them.

Personally, I can't fathom why anyone would consider a biologic without first exhausting everything else showing promise. This shows great promise.

You guys are truly pioneers, along with Drs. Bahiri (sp?), McCandless, Gluck, Smith, Skip, et al. Thank goodness doctors everywhere are beginning to take note of the success of these pioneers!
Posted 6/6/2008 6:34 PM (GMT 0)
there is hope, I am truly happy that this works for "you." But as Kitt stated, it does not work for all!!! And as you can see some folks here have had a very bad experience with it (as with other medications). So please respect that it isn't the end all and be all for everyone. Also some people have extraintestinal problems that must use pain meds daily (such as myself) and this medication would block the pain meds and we would suffer greatly.
Posted 6/6/2008 7:25 PM (GMT 0)

EMom said... Personally, I can't fathom why anyone would consider a biologic without first exhausting everything else showing promise. This shows great promise.

This statement is the clear difference between the pro-LDN and the "wait and see"ers.  Biologics and immunosuppresants like Imuran have been fully researched and used by people with autoimmune diseases for years.  LDN has not.  I have only seen one very small study and a bunch of anectodal reports about its effectiveness.  We don't know it's long term effects in people with our conditions.  One of the arguments I see regularly is that it's been in use for years at a much higher dose, so a low dose is safe.  For how long?  According to a quick search, standard naltrexone treatment is three months and can go up to twelve.  Will other symptoms appear with extended use?  I don't know.  Does anyone? 

I'm glad it works for some people, and I hope it continues to do so.  But I'm not prepared to be a guinea pig.  I'd love to see further research into this and every other promising treatment.  But one study with 17 participants isn't strong enough evidence for me to drop a treatment that is currently working to try something experimental.

Posted 6/6/2008 7:41 PM (GMT 0)
I think the information here is interesting, but to the point of why someone would use a biologic without first exhausting everything else showing promise. You have not walked in our shoes and do not get to judge how we want to treat our illness. I am not willing to give up on a med that is working to try one I have not seen enough studies done on. I have been in great pain in the past and I do not want to go there if I can help it again. So for me - so long as my Cade is working I will continue to use it. When it stops working - as my doc and I have discussed that it will - then I will see what is on the market at that time that has proven to be effective and then will go from there.

I am happy for you that you have found relief, but we all have our own trials to deal with. Please keep sharing the information, but do not judge us for not just jumping the band wagon with you.

Good luck and may it continue to be of benifit to you.
Posted 6/6/2008 8:44 PM (GMT 0)
Amen RedAdmin and bektold!!
Posted 6/6/2008 8:59 PM (GMT 0)
Carmen, how long did you try LDN for and when did you notice the side effects?

I understand about not wanting to be a guinea pig. I feel the same way. Unfortunately for me, I've tried all the meds and nothing puts me in remission in all the 11 years I've had crohns. I've never been in remission. I'm getting sooooooo sick of being sick, I feel like I can't take it sometimes. And now I'm pregnant and feeling even more desperate.

I want to try Hookworms or LDN, whichever I can get and is safe for pregnancy or right after pregnancy!!!!!!!!

Right now, I'm looking at having surgery while pregnant if these stupid obstructions won't stop!! Argh!!!

Sorry, I'm hormonal and in pain from this DD.

Posted 6/6/2008 10:30 PM (GMT 0)
there is hope,

Please fix your post it is hard to read. I tried to do it, but it just made it worse. In the future please do not cut and paste information. You need to type it.

__________________________________________________________________________
Plus if you all want to continue the conversation, please make a new thread this one is getting too big.
Posted 6/7/2008 7:25 PM (GMT 0)
My apologies for the "messed up" post. I "copy & paste" sometimes so that the quote that I post is accurate. I have deleted the post but will RE-post it on Monday, because...it was "unreadable."

Thank you for your "guidence" and I would love to "continue" this conversation. I am a little confused at your comment about "this thread getting too big." (I believe that there are "other" threads that have more pages than the 3 we have here (i.e. "you may have crohns if.... - is now up to 7 pages). So, I am a little confused about the need to start a new thread. Just wondering.....

Thank you again for letting me know that my post was unreadable so that I can re-post it.

Kindest regards,
Patti
Posted 6/7/2008 8:18 PM (GMT 0)
I think three pages is the magic number. I've had a moderator tell me that one of my threads is getting too long, too. *I don't know what the deal is with that You may have Crohn's page... but... just thought I'd let you know so you didn't feel like you were being singled out or anything*

:)
Posted 6/7/2008 9:58 PM (GMT 0)

Hello All,

When threads get to long it is hard for the members to look back and find what they read earlier. This post was started on 5/19 and has a lot of info posted by the members.  If I was a new member I would have trouble following it. 

Again I respect everyones opinion.   Decisions about health and well-being are highly personal, individual choices. Whatever treatment plan you choose, I respect.

The  You may have crohns if  thread is long but it is a feel good thread and I believe that laughter is good medicine.

Laughter is a healing activity. You may have seen the movie called "Patch Adams," which is a movie about a real life doctor who still practices today and uses laughter as healing. He's quite correct in using laughter as a healing therapy, because it is one of the most healing activities in which you can engage. I believe that is what is happening in the "You may have crohns if" thread. yeah

Bless each of you and keep on being the captain of you own ships.

Hugs
Kitt

Posted 6/8/2008 1:19 AM (GMT 0)
Tell me more about Hookworm.
I find the word autoimmune very vague as it strays to so many different probable causes.
I would also like to know if anyone has had extremely negative doctor or surgeon experiences.
Posted 6/8/2008 3:31 AM (GMT 0)
Kmfdm,
I made you a new thread with your name on it.
Navy
Posted 6/8/2008 3:34 AM (GMT 0)
I am starting a new thread on this subject and request that there be no more posts to this thread.
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I have requested that admin lock this post (due to rule violations) and I will be deleting any further posts.
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