new LDN thread

original question from Redspot:

redspot321 said...
Im just curious as to why people are not trying LDn. Ive heard all these positive things about the drug but nothing negitive. I would like to be educated on the down side of LDN since I am taking the drug. Theres not a whole lot of scientific evidence out there, do you have negitive experiences with LDN?

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This is a continuation of another thread.
Please remember this is a support forum and let's keep it positive.

In reading all of these posts, it is making me have a discussion with my GI about this. there have been reports about LDN on the news within the last month and of course the study going on at Penn State University which is showing great results.

There is hope's post:
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(History is made by those who do not go blindly into the night..." [Stephanie L. Ware, Private Investigator - 5/14/08 The Daily Advisor].

The topic of the thread here is low dose Naltrexone. The PDR is in reference to a high dose of Naltrexone which is FDA approved to treat drug & alcohol abuse. The "standard" dosage used for this FDA approved drug was 50 mg. The "Small doses will have no effect" comment (above) refers to treatment of "addiction." So, in summary...low dose Naltrexone (4.5 mg or lower) will NOT be effective to treat ADDICTION.

Naltrexone in LOW DOSE (LDN) has minimal side effects and there have not been any reports of "coma or death," none that I am aware of anyway. (The dosage is relevant here...) Even though we are speaking of the drug "Naltrexone" the effects (either good or bad) is dependant upon the DOSAGE that is used and what it is being used for.

I have taken LOW DOSE Naltrexone (4.5 mg) since March 2008 (to treat Crohn's / Colitis) with complete confidence that it is the only treatment that will work for me. I had very minimal side effects in the first 2 weeks and have received relief from symptoms from DAY ONE. I have been in contact with people who have used LDN to treat various illness (all of "these" illnesses have a common bond - autoimmune/inflammatory) thus, that is why it works to treat so many illnesses (MS, RA, Crohn's, etc.) Many have been on LDN for year with NO ILL EFFECTS...as a matter of fact...it has stopped disease progression for many, as proven through testing (MRIs, etc.)

Personally, I feel well for the first time in 30 years. I have gotten complete pain relief and my inflammation is gone. DO I have mild Crohn's? I would guess NOT, since I have had 30 years of diseased intestine which, I suppose, has caused a lot of "impaired tissue" and scaring (along with my surgery). I have suffered a long time with inflammation and "narrowing." I am at high risk of stricture, according to my GI who strongly suggested that I go on Remicade. I opted to give LDN a try and it is working very well for me.

F.Y.I.

I refused to "sign up" for Remicade because I felt it was too dangerous even on the standard dosage (to treat IBD)...
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I am very satisfied that I decided to participate in my healthcare...instead of just bobbling along through life. I did the research and found the answers for myself, so that I would not "go blindly into the night."

Good luck to us all!
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I did edit and move your post for rules 3, 13, 14, 17, 19. (I am sorry, I still need to remove more all caps. Right now I am too tired to finish it, but in the future please do not do this it is against the rules.)

Ummm... Well, MMMNavy had requested that you make the new thread, Patti, and since you did not, I guess she decided to do it herself in the interest of seeing continued discussion.

And again... the LDN thread is not the only thread that has been told to start a new thread because it was too long. I can go back and post a link to my old thread, in which a moderator told me that 3 pages is too much, too hard on the server, etc. and that a new one needed to be started. But that's kind of off-topic...

So... What is the longest anyone here has been on low-dose naltrexone for the treatment of their Crohn's disease?

Celey said...
So... What is the longest anyone here has been on low-dose naltrexone for the treatment of their Crohn's disease?

Hi Celey....do you remember Ingrid_Norway? She has asked me to answer you on her behalf. She has been on LDN since last September with immediate and continued positive results. Please feel free to email me if you would like any more information. I would be happy to put you directly in touch with her.

Celey said...
No, thank you, that's okay. :)

I was just curious as to how long people have been using LDN for their Crohn's disease. Has anyone been on it for more than a year?

Also... I've heard that it cuts down on bowel movements. That's all well and good for the Crohnies where diarrhea is a constant problem... but what about those oddball few of us that have the constipation problem? Anyone on LDN that has the constipation problem?

Celey,

These are two very good questions, although I am only able to speak from my own experience.  I had 10 - 20 bouts of diarrhea a day.....but after LDN....it was reduced to 2 - 3 times a day.  Do you have constipation problems?  (Just wondering why you inquire about that.  I have "heard" of that "symptom" before (rare but it does happen, even if ... it is just a few)...and I am sorry for them.

As I stated before, I can only speak of my own experience with LDN...which after day one gave me an incredible amount of relief.  I was in pretty bad shape (before LDN) with high risk of stricture due to narrowing and inflammation.  I had lost 70 pounds, was suffering from malnutrition, and loss of energy (not to mention that I was in a lot of pain).  It has taken me 3 months to feel the "full" benefit of LDN and "to me" it has been well worth it.

I have been in direct contact with other LDN users that have been using LDN treatment for many years....with great success (treating illnesses with a common bond - autoimmune/inflammatory).

Please email me privately if you (or anyone else) would like to hear more about my personal experience with LDN.  I will be happy to provide you with websites of interest so that you can do your own research (if you are truly interested) and I encourage you to do so.  My wish if for all of us to stop suffering (been there and done that for 30 years).  I am hopeful for us all and I wish you well.

Kindest regards,

Patti