Im going against the grain! Follow me along in my journey to healing!!!!

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redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 5/17/2008 8:31 AM (GMT -7)   
.....or failing...LOL nono

Well knocking out my immune system with Prednisone is simply not working. Im going to take another approach. Im going to try and throw my immune system into overdrive!?!?!?!

Tonight I will start LDN (Low Dose Naltrexone) treatment. Along with the LDN, I will take the following supplements which I have already started . On top of these medications I will continue to follow the SCD diet and hope for the best.

1. LDN nightly 1.5mg for 1 week. Then increase to 3mg day.
2. 5-HTP 50mg 3x a day.. to boost seratonin levels. Seratonin is good for the gut!
3. DHEA-25mg 2x day.. Slows the production of Cortisol. Cortisol inhibits the production of seratonin and weakens the immune system.
4. DLPA- to further boost the immune system and have and syngergistic effect with LDN.


This will be startes on 10mg of prednisone. I will continue to wean at 2.5mg week over the next 4 weeks.

Wish me luck.....

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/17/2008 8:47 AM (GMT -7)   
I just viewed some videos about LDN and was very impressed!! I'd just read about DLPA and LDN, too. Why not?! I'll be following your progress!

My hopes and prayers for great success are with you!!! You GO!!!
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


CAMEID
New Member


Date Joined May 2008
Total Posts : 8
   Posted 5/17/2008 9:38 AM (GMT -7)   
and we just dispensed low dose naltrexone to a customer who as  suffered for 30 years and has a fistula.  Her doctors wanted to put her on Humira but she fought for the ldn. She is doing great!!!!!! In addition to the improvement in Chron's disease she is off her depression medication and is starting a new life. google ldn and read about it. You can call Hershey or email Dr. Ian Zagon. He will get right back to you.  GOOD LUCK EVERYBODY. :-)
 
**Again email me re: editing of your post.....thanks
LYN 

Post Edited By Moderator (Howlyncat) : 5/18/2008 1:44:49 PM (GMT-6)


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 5/17/2008 1:49 PM (GMT -7)   
Please be careful with the DHEA during a pred taper. You need to have your adreanals start producing cortisol as you taper pred.
Good luck with your new approach and please do let us know how it works for you.
Sj

redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 5/17/2008 6:00 PM (GMT -7)   
sjkly said...
Please be careful with the DHEA during a pred taper. You need to have your adreanals start producing cortisol as you taper pred.
Good luck with your new approach and please do let us know how it works for you.
Sj
Good point. Maybe I should wait until I have completely tapered?!?!?!
 
Confused now.
 
What do you get from this article? It says that chronies have too much cortisol and dhea decreases it.

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 5/17/2008 8:21 PM (GMT -7)   
Those LDN conference videos have me so excited I don't know if I'll be able to sleep tonight! Thank you for the new and inspiring lead on a drug that might not do in my kidneys! I'm going to do more research, but I am very interested and inspired.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 5/18/2008 7:32 AM (GMT -7)   
I changed my treatment plan last minute Saturday night. SJKLY above reminded me the DHEA may cause problems while weaning from pred so I decided to hold the DHEA until my pred taper is complete and my renals begin to pump out some cortisol. (thanks for catching that :) I also decided to start with 3mg of LDN insted of the 1.5mg. I figured If sleep disturbance was the worst of starting out at a higher dose I could live with it.

Heres how it went.

At 1030 pm I took 3mg LDN and 500mg DLPA and 100mg 5HTP. I fell asleep around 11pm and had no problems until 2am. At 2am I abrubtly woke up in a somewhat dazed state of mind but quickly regained my bearings and fell back asleep with no problems. I woke up at 530am to my alarm and went to work.

Things I noticed so far this morning.

-Did I take LDN or Viagra last nite? Thats one hell of a side effect in the morning.

- I have absolutly ZERO pain in the right lower quadrant of my abdomen. I doubt LDN was able to heal any of my intestine overnight but the pain is gone so far......Could this just be from the increased endorphins or just lucky timing.

-No usual BM this morning. Im currently going 3 times a day with the first one upon rolling out of bed. Nothing yet and its almost lunch time. Once again I think I may just be having a good day. Theres no way LDN can work in hours....Is there???

PM update to come.......

redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 5/18/2008 5:46 PM (GMT -7)   
Just a quick pm update...So far so good. I had only 1 bm today! It was
still loose but not nearly as watery. I cant remember the last time I
went once in a day. Also Im passing gas without having to sit on a
toliet! Im a happy man! 4.5mg tonight

jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 5/18/2008 7:28 PM (GMT -7)   
I'm late to the LDN party. How does one get it? Or does a Dr. have to prescribe it?

Thanks!

I'm glad to hear that so many people are doing well with it!!

J

redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 5/20/2008 6:37 PM (GMT -7)   
jid said...
I'm late to the LDN party. How does one get it? Or does a Dr. have to prescribe it?

Thanks!

I'm glad to hear that so many people are doing well with it!!

J
Take a look a few post up at ingrid of norway. There are some good links there.
 
Also google "crohns ldn penn state"

zoeyridge
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 5/21/2008 8:46 PM (GMT -7)   
Redspot, I'm happy to hear that you are doing well on the LDN. I am currently taking 6mp and it is not working as well as we'd hoped. My doc is pushing for Humira after this and I am pushing back for LDN. Please keep us posted on your progress.

Best of Luck!

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/22/2008 7:20 PM (GMT -7)   
Considering I have taken Imuran, IMP, Remicade, Methotrexat, Prednisone, Humira, Asacol and many other drugs, this seems very promising and exciting. I will discuss with my doctor in three weeks.

redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 5/22/2008 7:43 PM (GMT -7)   
Still going great everyone! 4.5mg at bedtime. Sleep was an issue at first but I think its getting better. I ll trade some sleep disturbance for normal bowels any day...LOL

Crohn'snme, My GI would not prescribe LDN. I had to go to an alternate source. He told me if it were him he would take LDN too! but he wasnt willing to write for it because it is off label.

I cant wait to go back to him in a year and request a colonoscopy........assuming I continue to do well..

Good Luck!

Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/23/2008 5:53 AM (GMT -7)   

redspot, congrats on your script and your success with LDN, so far.  please keep us posted.

but, I wanted to point out that DHEA does NOT suppress cortisol. 

DHEA is converted by your body into estrogen and/or testosterone and/or cortisol, depending on what your body's doing.  If you naturally produce lots of cortisol, then you will have low DHEA. 

some websites say that DHEA might reverse the negative effects of cortisol, and that may be true, they don't say how it works, but it doesn't suppress cortisol.


redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 5/23/2008 10:06 AM (GMT -7)   
Illy said...

redspot, congrats on your script and your success with LDN, so far.  please keep us posted.

but, I wanted to point out that DHEA does NOT suppress cortisol. 

DHEA is converted by your body into estrogen and/or testosterone and/or cortisol, depending on what your body's doing.  If you naturally produce lots of cortisol, then you will have low DHEA. 

some websites say that DHEA might reverse the negative effects of cortisol, and that may be true, they don't say how it works, but it doesn't suppress cortisol.

Yes, the DHEA is on hold for now. Still trying yo figure this one out!
 
Thanks

there~ishope
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 5/28/2008 1:28 PM (GMT -7)   

Hey redspot and all!

 

I just wanted to join in on this song!  I have been on LDN for almost 3 months now and I can’t believe the HUGE POSITIVE impact that it has made in my life!  After suffering with Crohn’s disease for 30 years, I have finally found relief using LDN.  I can feel myself healing!

 

I got symptom relief  the first day on LDN!  I was having diarrhea 10 – 20 times a day before LDN and the first day it was reduced to 2 – 3 times a day!  My pain is gone!  I have had a persistent lower left side pain (colon) for the past two years that in the first month on LDN was improved and now is completely gone!

 

I have had a few “crohns-ish” days but each day gets better and better.  If it doesn’t get any better than it is right now….then I am a happy camper!  :o)

 

I want to wish you well and even though it takes a little time to heal….I believe that it will happen.  I am scheduled for testing in July and I can’t wait to see if there is “visible” tissue repair like I see on the website (www.lowdosenaltrexone.org).

 

Those of you who are interested in learning more about LDN must do the research!  Some doctors will not prescribe it (off-label) for various reasons but I can tell you that from my experience….LDN WORKS!  I am a very “undisciplined” Crohn’s / Colitis patient (poor food choices / alcohol consumption) and LDN still works for me!  I would “assume” that my poor habits may delay my healing….but I feel better now than I have in over 30 years!

 

I wish you all well!  I leave you with some helpful websites of interest:

 

www.lowdosenaltrexone.org (This is the "main" website).

 

http://gazorpa.com (Helpful info).

 

http://autoimmunedisease.suite101.com/blog.cfm/crohns_disease (Clinical trial results - 89% experienced improved symptoms - 67% achieved REMISSION)!

 

http://autoimmunedisease.suite101.com/print_article.cfm/benefits_of_low_dose_naltrexone (General info).

 

 

http://health.groups.yahoo.com/group/lowdosenaltrexone/  (This Yahoo Group is a "blog" of LDN users and I had to "apply" and get "accepted" to join the group.  They do this because the "topic" is LDN (strictly) and not a "support site," etc.  They are people from all over the world that either have an interest in learning more (ask questions) (from actual LDN users) or to share their experience with LDN with others (provide answers).  I gathered a lot of info about LDN by "joining" the group.

 

 

Please feel free to contact me if you need additional information!

 

Kindest regards,

Patti (a/k/a there_ishope)


 
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)
*Low Dose Naltrexone (LDN) user - March 2008 - FINALLY FOUND A TREATMENT THAT WORKS!


redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 6/1/2008 7:56 PM (GMT -7)   
Hey everyone, Im feeling great on LDN. Like I never had CD?!?!?!?

I did have 1 set back about a week after starting the LDN. I felt so good I started eating all kinds of things like raw fruits and vegies and steak. And tried to power wean my last 10mg of pred..... I had a bowel obstruction which cleard on its own. It was never accompanied with the normal RLQ pain. Just the cramping. Im pretty sure its just a stricture and not infectiuos.
Once it passed I felt great again.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 6/1/2008 7:58 PM (GMT -7)   
Awesome news!
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 20mg prednisone.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/2/2008 3:53 AM (GMT -7)   
There~ishope and redspot, thank you for your posts! I am sooooo happy for you! Please continue to keep us updated!

There~ishope, for anyone interested in contacting you, I just noticed you do not have an email listed (no little yellow envelope icon under your name to the left)! Did you simply mean to contact you through this thread? Thanks!
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Weaning off Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 6/2/2008 5:38 AM (GMT -7)   
No, please contact me with any questions!!
I think I fixed the problem. redspot321@gmail.com


I took my boat out yesterday with the kids and wife. We were out all day. We ate an entire watermelon between the four of us and even drank a couple of beers. Not a worry in the world.......
29 YO Male
 
-CD diagnosed in 2005 illieum
-63cm bowel resection in Feb 08
-Steroid dependant following surgery
- LDN Naltrexone started May 08 been a happy man since!!


there~ishope
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/3/2008 9:25 AM (GMT -7)   

Redspot!

 

I am SO HAPPY for YOU!  I am glad that you are “living to learn and learning to live!”  I am also glad that you have gotten the same benefit from LDN that I have!  I truly want that for everyone!  Like I have heard before, I quote, “Keep on keepin’ on!”

 

EMom:

I didn’t realize that we could “set up our account” to have our email icon included in our post.  I will “update” my account to include it so that people can inquire me directly or they can post a question here.  I would be happy to help in anyway that I can!  Thanks for bringing me “up to speed.”  tongue    LOL!  Please keep in touch!  I would love to hear from you!


 
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)
*Low Dose Naltrexone (LDN) user - March 2008 - FINALLY FOUND A TREATMENT THAT WORKS!


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 6/3/2008 11:56 AM (GMT -7)   
 
RED...I am sooooooooo happy for you...
 
I will begin mine as soon as the compounder makes it...He had to order the pure powder and is making it into a liquid for me, should be ready tomorrow...I will then pick it up and bring it to my naturopath who will muscle test me...I cann't imagine my body not wanting it since I have been begging my doctors for 2 years for it...My new doc is the one who prescribed it and is in the same office as my naturopath and he would like to start me on melatonin right away to avoid sleep issues...I am still on Ativan from the levaquin reaction and must get off this stuff...My entire being is based on natural, whole foods and holistic healing methods yet I am stuck on this drug because of previous doctors errors and greed...I have some good news for now tho...I began my elimination diet advised by Sage Medical and my bleeding and all other issues ceased in 13 days!!! Imagine on 80mg. pred, asacol, colazal and would die if I didn't do Remicade (docs opinion) yet my life has changed due to omitting dairy, beef and a few other foods...
 
Did I have Crohn's colitis? Was I misdiagnosed? I know I was tortured for profit but was this the result of greedy docs from the get-go? As of today, I must say ABSOLUTELY...
 
I am hoping others are learning from our experiences and are trying things 'outside the box'...The worst decision I ever made was to believe/trust my GI and the others that knew him...They were supposed to work together to help me, not hurt me...
 
No lawyer was too interested in my case of mistreatment before, I wonder what misdiagnosis would get me...These docs are something else...Well nuff of that nonsense, something I guess I have to 'live' through...
 
Again, soooooooooooooooooo glad you are improving and got to go boating with your family...My husband just bought me a new Tribeca and a speedboat for recovering as much as I did and I have been enjoying fishing once more...Caught a few nice pickerel and largemouths too tongue I still got it!!!
 
Keep us informed...You are certainly inspriring me and I am looking forward to getting my LDN, but as of today, the diet has really helped...Sage Labs was right, 2 weeks and you will be healed...No lie there...
 
Take Care Red, Peace~MamaDove
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/3/2008 12:01 PM (GMT -7)   
So just curious, I know that you can't take LDN if you use opiods, it basically voids them out. I am assuming you folks who are using LDN don't have any kind of inflammatory arthritis or osteoarthritis. I suffer terribly with both and could not live without my pain killers. My tummy is pretty much under control, but the joint pain is always with me. Am I correct in assuming you are not suffering with any joint pain?
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


there~ishope
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/3/2008 1:28 PM (GMT -7)   

Nanners,

 

I would never try to dissuade anyone from any treatment or care that works for them.  I share my experience with you because LDN works for me.  I only wish that more people would benefit from LDN the way that I have benefited.  I wish everyone well!

 

You are correct, I personally do not take pain killers.  I have been in contact with many LDN users with various illness, RA, MS, Fibromyalgia, IBD, etc. (and others that I have never heard of).  I know that there are some pain meds that will work in conjunction with LDN.  Darvocet is one of them (according my compounding pharmacist who himself uses LDN and is an LDN Advocate). 

 

I need to check into this topic in more detail because I am interested in learning more.  I will update this post after my research. 

 

If you have an interest in LDN, I would suggest that you do some research (I posted some websites of interest earlier on this thread).  I am only giving you a “lead” to a treatment alternative that works for me!  I learned all I could (that pertained to Crohn’s) and am convinced that LDN is the right treatment for me!  It has made an incredible improvement in my health and my life!  

 

Please feel free to email me if you have any questions about my experience with LDN!

 

I wish you the best!

 

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!

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