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EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/9/2007 7:52 AM (GMT -7)   
Hi everyone! I've been following postings from those of you on LDN, but haven't seen any of recent. How are you all doing? I would appreciate any insight you can give me. Thanks!

EMom
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.
Just starting the Maker's Diet.


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 10/9/2007 8:57 AM (GMT -7)   
Hi EMom,
I am still fine, no problems.

Thanx for asking!
From Ingrid

Have you seen this video`?

It's about an American woman using LDN, please go to the TV channel below:

 

 

http://www2.tbo.com/static/sections/tbo-life-health/

 

1.Choose Video below Health 4you

2. Choose Health

3. Scroll down and find: Crohns Disease

 

 

Intervieu with this lady was Wed, Oct 3rd

www.tbo.com

if you want to find it later

 

 

 

 

 


 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. I don't use white sugar. No yeast in glutenfree, homemade breads.

Post Edited (Skjura) : 10/9/2007 10:23:51 AM (GMT-6)


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/10/2007 5:45 AM (GMT -7)   
Thank you, Skjura! I have tried several times to view the video which you posted the link for, but after I scroll down and click on Crohn's Disease I am not sure what to choose. What am I doing wrong?

I am going to bring up LDN at my son's appointment today, that is why I ask. I am anxious to hear whether this treatment has been successful for those of you giving it a try. I will check out the yahoo lowdosenaltrexone group!
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.
Just starting the Maker's Diet.


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 10/11/2007 3:26 PM (GMT -7)   
I started on LDN about two weeks ago. So far I do feel better, but I think I need to wait a couple of months before I can definitely say if it's helped. There is always the possibility the I'm experiencing the "placebo effect," or that I'm coincidentally in remission. But after a few months I should know for sure.

As for obtaining LDN, I didn't bother to go to a doctor. You can legally buy up to 3 months supply of non-narcotic drugs online. I bought mine from riverpharmacy.com, which is located outside the USA. They are reputable, and I didn't have any problem. The only catch is that they don't sell LDN, they sell 50mg naltrexone (actually, that's the only kind you can buy unless you get it from a compounding pharmacy. But I found it very easy to cut the doses myself. I followed the instructions here:

http://goodshape.net/HomemadeLDN.html

Actually, it's even easier than they make it sound. I cut the pills in half with a pill splitter, then dissolve the half-pill in six teaspoons of water. I take one teaspoon daily (store the mixture in the refrigerator). Rolling your own LDN is dead easy. Feel free to ask if you have any questions about how to do it.

A "one-month" supply of 50mg naltrexone will in fact last 360 days (or longer) if you turn it into LDN. A "3-month" supply will thus last 3 years.
Crohn's since 1988
3 resections


ana_e
Regular Member


Date Joined Feb 2007
Total Posts : 67
   Posted 10/11/2007 3:41 PM (GMT -7)   
Emom

Our daughter is now in remission after about 2 months on LDN.
She has also been on Homeopathic medications.

Overall she took 4 months because before we started LDN, she
was on steroids(which were not helping at all) and we had to
slowly taper her off(which took 5-6 wks). Good Luck with
your LDN usage.

========================================

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/11/2007 8:30 PM (GMT -7)   
ana_e, it's so great to hear about your daughter! thank you for the update.

Kenny23
Regular Member


Date Joined Aug 2005
Total Posts : 128
   Posted 10/11/2007 10:17 PM (GMT -7)   
were the penn state phase two trial results every published? or is it still ongoing?

From what I hear, LDN works very well in many people. I've never taken it, but plan on taking some in the future.

killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 10/12/2007 1:31 AM (GMT -7)   
Hi EMom

I started LDN a week or so (?) after Ingrid. I was only recently diagnosed with mild Crohn's and hence it is difficult to chart my reaction. Here are some of the things that have happened that may or may not be attributed to the LDN:

1) Extra constipation?
2) Feeling hot/sweatier than usual?

I just got my period and I'm usually more constipated prior to that, so the constipation may not be an issue. But the heat/sweatiness may be attributable to the LDN. Ingrid, did you mention this symptom also on the lowdosenaltrexone Yahoo site?

So far no relief from Crohn's, but at the same time my symptoms were quite low to begin with. I'm in it more for the long term, I suppose. I was hoping for some relief from my joint pain but so far no go. However, I have also read that I should give the drug at least 2 months to work its magic before drawing any conclusions.
36 year old mother of a fabulous toddler named Mara. Symptoms began after Mara's birth, with widespread pain/stiffness and mucus in stool. Had seen blood in stool for years prior but believe (and still suspect) hemorrhoids and/or fissures for this particular manifestation.

STARTED LOW DOSE NALTREXONE SEPT. 26TH www.lowdosenaltrexone.org. Also see: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

Diagnosed with Crohn's July 2007. The only visible areas of inflammation via scope were my stomach, rectum, and somewhere else in my colon (was too out of it to hear where, exactly). Pill cam, SBFT, CT Scan all were normal.

TRYING MY BEST TO PRECLUDE FUTURE COMPLICATIONS.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and burning now gone. Gastritis symptoms are also quiet now. What was horrible right hip and low back pain has subsided about 60%. I'm pretty much feeling normal since the SCD/Supplements/Naltrexone but the fatigue still occurs and I in no way think I do not have more symptoms in my future.


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 10/17/2007 12:19 AM (GMT -7)   
Hi,

I am so sorry, I haven't seen your question here, I have been doing searches for "low dose naltrexone" and not only "LDN" in the search box at the forum, so it got zero hits for me.
I am thrilled to find that so many ppl. have started with this medication.

Emom: The video: You do the right thing, I have just done a control, and the last thing you have to do is to wait for the video to buffer. It needs to come down to your computer. You may check that you have the right program to watch the videos. Do anyone else of you have trouble watching the video I have written about up here?

killerzoey: For some ppl. LDN will make changes for the better over time. In the yahoo group that I participate, they say it often needs some months to almost a year. As for the hot / feeling sweatier than usual, I did too, both at night the first weeks and some times now and then in the days, too.
I also felt sleepier, and needed a nap every day. I still sleep more than before at night, and I am satisfied I do, because I have had a lack of sleep the last year before I started LDN.

Emom: as for your questions about the doctors and rx: if you join the lowdosenaltrexone groups at yahoo, (you need to register to get a membership, smart to get an email adress in there too, otherwise your own email box will explode.....incoming A LOT of mails (some 100) in a few days from ppl. using LDN)....I also did choose the new email box in there, it's better to read and organize)...
Doctor and rx:
When you have joined the group, ask for help getting a doctor that can write you a rx. There are ppl. in there helping with such. There are also doctors and pharmacists as member of our group.
Users in the group really want to spread the word, to help other. It's a positive and welcome clima.


My own LDN use and experience so far: I got prednisone right after I god my diagnose, in july this year. I used pred, but it only worked while on high doses. When tapering, the pain, the bloating and the obstructions returned. When I quitted, I got on LDN immediately.

It worked from the first day. It's now 4 weeks, and I have gone from 3 mg to 4.5 mg.
I am now on maximum dose, and I am 100 % feeling well. Like I did before I got sick. But have to say: I probably have a sort of stricture, they have seen a narrowed intestine during barium xrays. This stricture/narrowing do now give only minor pain, pain that lasts for 30 sec's each time. And only 5 - 6 times a day. (After dinner, when eating vegetables)
This stricture / narrowing gave me a h... of a pain before LDN.


I still may have a sort of honeymoon, or I still may have a sort of placebo. But I could be one of them that this medication works on. 89 % gets a better life on it, 67 % gets in remission. The medication is homeopathically small, only 4.5 mg - with minor start up side effects that don't screw the body at all.


Good luck to your son, Emom,
tell him I hope he will succeed!
Ingrid :-)


 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. I don't use white sugar. No yeast in glutenfree, homemade breads.

Post Edited (Skjura) : 10/17/2007 1:20:32 AM (GMT-6)


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/17/2007 5:45 AM (GMT -7)   
Kenny23: It's my understanding the phase II trials are still underway. Dr. Smith will be discussing her trials this weekend at Vanderbilt U. Check out this page: http://www.lowdosenaltrexone.org/events.htm

ana_e: I am thrilled to hear about your daughter! Did you find a doc to prescribe LDN for you or get it in a similar fashion to ozonehole?

ozonehole: You are a rebel! Just the kind of person I like to hear about! Amazing... I will keep that website you posted and consider that if my docs won't comply with our wishes.

Killerzoey, Ingrid: thank you for all the information! I am going to go to yahoo's LDN group very soon. I've been terribly swamped lately. I'm happy to hear you are having mostly positive experiences!

We need to keep this thread going so more on LDN will post!

Thanks everyone! yeah yeah yeah
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.
Just starting the Maker's Diet.


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 10/17/2007 6:10 AM (GMT -7)   
Wow this looks interesting going to asked my GI doctor about this.
Crohns for 11 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 10/17/2007 11:00 AM (GMT -7)   
 
More info,
killerzoey:
1) Extra constipation?
2) Feeling hot/sweatier than usual?
Yes, both have happened to me. From diarrhea to the oppostite, this is still a problem, and feeling hot / sweatier ....this has dissapeared.
 
To Erik45 and Emom:
 
This is a really useful link when you want to contact your doctor.
 
 
 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo. A mixed group, members with MS, Crohns, Colitis Ulcerosa, psoriasis, other autoimmune diseases.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. I don't use white sugar. No yeast in glutenfree, homemade breads.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/17/2007 11:56 AM (GMT -7)   
Wow! That's an awesome link, Ingrid! Thanks!
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.
Just starting the Maker's Diet.


ana_e
Regular Member


Date Joined Feb 2007
Total Posts : 67
   Posted 10/17/2007 12:28 PM (GMT -7)   
Emom, njmom
Thanks for your well wishes.

Emom
We went to Dr. Jaquelyn McCandless(jmccandless@prodigy.net) who specializes in treating Autism with LDN and she prescribed LDN for our daughter. I actually first approached Dr Jill Smith(Penn State specialist using LDN) who redirected me to Dr. McCandless because Dr. M has experience with correct LDN dosages to be administered in small children. The LDN dosage is smaller than the one prescribed for adult usage. Also, this version of LDN comes in a trans-dermal cream form which needs to be simply applied to the trunk of the body(hairless portion) b/w 9p and midnight. This is much easier than oral feeds.

We were quite happy with her GI specialist but he told us that he would not prescribe LDN because he did not have enough evidence that LDN would work and he recommended us to go Remidcade/Humira way- that was the only option left for us - no other medication worked. We wanted to try alternate path before taking this choice. The GI warned us that if we did not take Remicade/Humira way and try alternate, it could be too late to take those and those medications also may fail to work for her. It certainly has been a big risk but really, what in life is not?? We are still on an edge and sincerely hope that she would not need to come back to the mainstream CD medications. Working with LDN has been much simpler(and most imp.ly - effective)
=======================================================================

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/17/2007 5:47 PM (GMT -7)   
ana_e:
I am familiar with Dr. McCandless' work. How wonderful she was able to help you!!! Please email me privately if you would--I have an important question. Thank you!
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.
Just starting the Maker's Diet.


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 10/17/2007 9:09 PM (GMT -7)   
Thanks for the info i really appreciate it. yeah
Crohns for 11 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 10/18/2007 2:49 PM (GMT -7)   
Dr. McCandless is wonderful! I was so fortunate to have had Brenda at ldnproboards direct me to her. I did the transdermal cream for a week or so just to make sure the 4.5 dose was tolerable, and then she had them send me 4.5 mg capsules. Her pharmacy uses Avicel as a filler and I was a bit nervous that it would effect me, but it does not at all.

The bloating and constipation have diminished some, as has the sweating. I think I may be feeling sharper and more energetic during the day. That's about all I have to report.
36 year old mother of a fabulous toddler named Mara. Symptoms began after Mara's birth, with widespread pain/stiffness and mucus in stool. Had seen blood in stool for years prior but believe (and still suspect) hemorrhoids and/or fissures for this particular manifestation.

STARTED LOW DOSE NALTREXONE SEPT. 26TH www.lowdosenaltrexone.org. Also see: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

Diagnosed with Crohn's July 2007. The only visible areas of inflammation via scope were my stomach, rectum, and somewhere else in my colon (was too out of it to hear where, exactly). Pill cam, SBFT, CT Scan all were normal.

TRYING MY BEST TO PRECLUDE FUTURE COMPLICATIONS.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and burning now gone. Gastritis symptoms are also quiet now. What was horrible right hip and low back pain has subsided about 60%. I'm pretty much feeling normal since the SCD/Supplements/Naltrexone but the fatigue still occurs and I in no way think I do not have more symptoms in my future.

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