new LDN thread

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MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 6/7/2008 8:53 PM (GMT -7)   
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?

______________________________________________________________
This is a continuation of another thread.
Please remember this is a support forum and let's keep it positive.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 6/7/2008 9:58:55 PM (GMT-6)


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 6/7/2008 9:24 PM (GMT -7)   
Thanks MMMNAVY for this new thread, it was getting harder to keep up on the other thread and I, like Redspot , am interested in other peoples LDN experiences, although by the time LDN is used for CD in Australia there might be a cure for CD by then lol
Joanne

mtbcubs2004
Regular Member


Date Joined May 2008
Total Posts : 25
   Posted 6/8/2008 9:40 PM (GMT 0)   
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.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/9/2008 7:30 AM (GMT -7)   
bump for there is hope
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/9/2008 7:48 AM (GMT -7)   
There is hope's post:
_____________________________________________________________________________


(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)...
____________________________________________________________________________________

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!
_________________________________________________________
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.)
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 6/9/2008 8:39:26 PM (GMT-6)


there~ishope
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/9/2008 6:12 PM (GMT -7)   
Please excuse me as I am "new" to this forum but I understand that this "original" thread was "too big" and a "new thread" was to be used. I don't understand why the original "title" of the thread wasn't used...so that "people could follow" the original thread. Please let me explain....

Redspot started the thread with the title...."To all chronies...Why have you not tried LDN (Low dose Naltexone?) And because the thread was (3 pages long) there was a need to start a "new thread" ....according to the moderators. That is fine....but why not "continue" the thread with the same name...and a PART 2 attached.... (i.e. To all chronies...Why have you not tried LDN (Low dose Naltrexone? PART 2)....so that people can actually "follow" the original thread? I am sure that the author (Redspot) of the thread would have wanted his "thread" to be followed....and by closing his thread and renaming it to "new LDN thread" really could cause some confusion to those trying to "follow" his original thread.

Thank you in advance for assistance.

Kindest regards,
Patti
 
Patti (a/k/a there~ishope)
*dx Crohn's - June 1978
*surgery - Dec. 2002 - Ileocolectomy/resection
*dx Crohn's/Colitis/Acid Reflux - Feb. 2005 (2006)
*B-12 Injection (1cc/mo)
*4.5 mg Low Dose Naltrexone (LDN) - March 2008 - Finally found a treatment that works for me.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/9/2008 7:58 PM (GMT -7)   
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?
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/9/2008 8:12 PM (GMT -7)   
I emailed you there~is hope.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/10/2008 4:41 AM (GMT -7)   
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.
Mom to 16 year old boy diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3, a good multivitamin, SCD legal yogurt, weaning off Asacol.
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/10/2008 7:28 AM (GMT -7)   
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?
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


there~ishope
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/10/2008 4:47 PM (GMT -7)   
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
 
Patti (a/k/a there~ishope)
*dx Crohn's - June 1978
*surgery - Dec. 2002 - Ileocolectomy/resection
*dx Crohn's/Colitis/Acid Reflux - Feb. 2005 (2006)
*B-12 Injection (1cc/mo)
*4.5 mg Low Dose Naltrexone (LDN) - March 2008 - Finally found a treatment that works for me.

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