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06-21-2009, 05:00 PM   #61
AvsGuitarist
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Hey I'm about to try LDN next week (with VSL#3) and I have three questions:

1. Did anyone try LDN and NOT have success on it?
2. How long do you have to be off your normal prescribed drugs? (I'm on 2g of Pentasa)
2. I went to a holistic doc and he recommended the SCD diet to go along with it. Does anyone taking LDN follow SCD or another specific diet?

Thanks!
__________________
Diagnosed with Crohn's in July 2007, Asthma all my life - Improving!
CrossFit Enthusiast/SCD Diet Follower -- Severe Peanut Allergy, Lactose Intolerant, Soy/Nut Sensitivity
Status: Close To Remission!

Drugs, Vitamins/Day:
-4.5mg LDN
-Completed Rifaximin Treatment (1 Pill - 3x/DAY) + SCD Yogurt Probiotic
-5000mg EPA Fish Oil, -1,000 IU D3, -1mL B12 (Self-Injected Shots)


GO AVS

Last edited by AvsGuitarist; 06-22-2009 at 12:32 AM.
06-22-2009, 10:01 AM   #62
straightpipe
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AvsGuitarist - I started LDN 9 weeks ago. I was on 10 mg of prednisone at the time. I am now down to 5 mg of prednisone. It took 8 weeks before I could say the LDN was doing anything. In fact by week 7 I was much worse. At about week 8 what a difference. I am still on Colazal and Questran. Don't believe you can go off of the (Pentasa, Asacol and Colazal) type drugs. I am on Questran because of a previous surgery. I need it to absorb the bile salts. If you start LDN give it a chance. I was just about to give up on it and now I'm sure glad I didn't. I have read where it took up to 3 months for some people. Hope it works for you.
06-22-2009, 10:07 AM   #63
katiesue1506
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I was on LDN and it didn't work for me... my new doc (a researching Ph.D doctor) tried to replicate the Penn State study but couldn't get the same results... he also said there were efficacy problems with their study. But you people here are obviously doing well on it, so yay for you!!
06-22-2009, 12:04 PM   #64
AvsGuitarist
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So I should stay on the Pentasa? I plan on giving LDN a LONG chance.

Thanks katiesue. I always hear of the successful stories with LDN but never the unsuccessful ones. Just interested to know if there's someone here it didn't work for...
06-22-2009, 02:56 PM   #65
D Bergy
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I think the ratio is about 75% of people using it get improvement. Even with the improvement I think more needs to be done to stay healthy. LDN has kept me in remission as far as I can tell.

I think you are on the right track with the probiotics and SCD. I do not follow the SCD strictly, but I do eat a high protien, low carb, low sugar diet. I try to eat like a caveman would.

Dan
06-22-2009, 04:36 PM   #66
AvsGuitarist
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Just got my VSL#3 and LDN today! Seriously it's Christmas up in the hizzy! Insurance covered all the LDN (surprisingly) and the VSL#3 was $77. Just took a packet of VSL#3 and going to take the LDN tonight. Fingers crossed for all this stuff to work!

Dan -- I agree and that's how I eat too. I read the Paleo Diet by Loren Cordain in January and have mostly been eating like that ever since. Question: Do you take any other medications in conjunction with the LDN?
06-23-2009, 12:17 PM   #67
D Bergy
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I have never taken any other medications besides LDN. I did not like the premise of lowering immune response to prevent the immune system from reacting to what I believe is a bacterial infection. This seemed to me a allopathic treatment that would likely result in more bacterial infection and more problems down the road. I was not as interested in stopping symptoms as I was in stopping the disease. The treatment has to make sense to me, before I will use it.

I do use two other alternative treatments. One brought me into remission and the other is unproven, but has worked for other infections that involve viruses and bacteria. It has not been used for Crohn's specifically to my knowledge. I have just started using it, and I have no clue if it can help.

I use whatever I can, providing it has a scientific premise that indicates it may help.

I also try to keep the alternative treatments in the low risk category, although all treatments carry some risk.

By doing this, I am learning how to treat some other diseases that my family members are dealing with, that are much more difficult than controlling Crohn's. At least more difficult than my case of Crohn's.

Dan
06-23-2009, 12:54 PM   #68
Lisa5326
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Sorry, hope not hijacking, just want to say...
Ooh Dan I really like your thoughts on this...
06-23-2009, 02:18 PM   #69
AvsGuitarist
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I like your thoughts too. Maybe I'll give it a whirl without the Pentasa eventually.

So you've never taken anything besides LDN?

FYI I just tried it last night. I didn't go to bed right away and man did it keep me up. My brain was SOOOO active! I had some wicked vivid dreams too. It was like a John Woo film with doves flying around. Just ridiculous. I did feel like I had more energy this morning, but it could just be the placebo effect.
06-30-2009, 10:10 PM   #70
RobK
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In my 6th week of LDN and now down to 1mg of prednisone! Can honestly say I have had no flare ups. My blood work shows my hemoglobin is still low which explains my fatigue late in the day....so really that is my only challenge at this point. Still following SCD diet as well.

RobK
07-04-2009, 04:38 PM   #71
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Awesome Rob! I'm not even into week two and I think I feel a difference with the LDN and VSL#3. I look forward to week six.
07-06-2009, 11:31 AM   #72
straightpipe
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I would like to thank Dan, Kev and Miss. I used your posts and the Penn State trial to get my GI to prescribe LDN. Without your posts I may not have been able to talk him into prescribing LDN. I'm still doing good. I am feeling so much better. I have energy now; where before I was always so tired. I'm not perfect and never will be because of my previous surgery. But I would rate how I feel at 98% where before LDN I was at 30% maybe even lower. Thanks Again.

Robert
07-06-2009, 07:56 PM   #73
D Bergy
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That is really good news!

Thank you for keeping us informed on how it is working for you. LDN is not a perfect treatment, but when it works for someone it can bring you close to a normal life.

Dan
07-13-2009, 03:17 PM   #74
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What time do you guys take LDN? Mine says to take it at 9pm (I read why and understand why)

Do you take yours at 9pm or do you take it right before bed? Just curious.
07-13-2009, 05:45 PM   #75
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i take mine just before i go to bed.. have found that if i stay awake, and walking around after taking it, i start to feel weird..
07-13-2009, 05:59 PM   #76
D Bergy
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I take mine before I go to bed or between 10:00 and 12:00 PM if I am working midnight shifts.

I cannot notice any difference between taking it, or not when I am awake.

Dan
07-31-2009, 09:51 AM   #77
Miss
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Glad to hear that straightpipe. I hope you continue to improve and feel better.

I have now been on LDN and no other prescription for over six months and have been doing great. I feel totally normal again. I still have some minor issues with my cycle but I'm almost a hundred percent normal. I have a long way to go to get rid of all of this pred weight but at least I'm healthy, just fat now.

I take my LDN just before bed. I sometimes wake up to use the bathroom and every once in a while I'm wide awake depending on what time I get up in the middle of the night. I found that if I'm up around three then I'm up for an hour or so. I just use that quiet time to watch TV or read. I homeschool three kids so any quiet time is welcomed, even if it's in the middle of the night. That gives me a good excuse for an afternoon catnap anyway.

Miss
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39 yr. old homeschooling mom of 3
Diagnosed Crohn's 06/08, then UC 08/08
Asacol made me worse, severe reactions to Remicade
Currently taking LDN since 10/08, doing very well
www.lowdosenaltrexone.org
08-01-2009, 10:47 PM   #78
RobK
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Miss,

Like you I'm only taking LDN now. I was able to get off of prednisone and I've only been taking LDN for 2 1/2 months. I also following Specific Carb Diet.

I still have an issue with anemia...sometimes have fresh blood in my stool but I'm working on getting my hemoglobin up.

I understand you had some issues like that....any suggestions?

RobK
09-17-2009, 01:51 AM   #79
Naps22
 
Kev said:
My options (from my wonderful GI) were metho or (after I convinced her to look at it) LDN. She agreed the risk of LDN (tho unknown) were far less than metho. I think it helped that the AZA had previously put me in emergency, so being fearful of potential side effects took on a lot more relevance. Not all doctors have their heads buried in the sand.
Since you've been on LDN for awhile now, what do your BM's look like daily on a scale of 1-10?

I really want to try this stuff but I need to be patient. It sounds like it is awfully hard to get a doctors prescription for this it. How would I go about approaching my doc to ask for something like this?

And, I know people here are probably against this, but there are ways to obtain this stuff illegally through foreign pharmacies online. Probably not the smartest idea though.
09-17-2009, 07:05 AM   #80
Miss
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People are not getting LDN illegally, you can order it through different chemistry sites at fifty mgs and dilute with water and then take the specified amount.
I happen to be local to Hershey where the studies have gone on so some doctors are willing to prescribe it because of the newspaper articles and such. If you have enough supporting evidence with you, any doctor should prescribe it unless they have their head in the sand.
I've been on it almost a year and bm's are totally normal, I'd say tenish, normally two bm's in the morning, no blood, no D. Things are sometimes a little iffy around my hormonal time but haven't seen blood in months thank god.
I eat a normal diet, no restrictions, probably a little too much processed stuff really. I do try to eat healthfully most of the time but still eat commercial bread, cereal, occasional candy, sweets, or icecream, processed crap from a box like macaroni or whatever once in a while.
There have been studies done on LDN and alzheimer's. My aunt just recently mentioned this to my grandma's doctor and she seemed open to it so there are doctors around that are up on current info and willing to prescribe "off label"
I think remicade was actually a med for arthritis or something but they gave me three infusions of that poison!
I have been paying out of pocket the twenty-five bucks a month and jumping through hoops to try to get reimbursed from my insurance company. Just blows my mind that I didn't hear a word about the forty-five HUNDRED they paid out for each remi infusion but give me a hard time about LDN. This is a generic drug that's been around for twenty years or so with little side affects. They don't even know all of the sides with most current meds, that's why they occasionally pull something off the market because they figure out it's worse than originally thought.
I believe that LDN should be the first standard treatment for a lot of things, then if that doesn't work try something else. It's so cheap and works for eighty percent of crohn's patients, not sure what the numbers are for MS, cancer, etc.
If your doctor wont prescribe it, find one that will.

Miss
09-21-2009, 12:35 AM   #81
Naps22
 
From what I've looked into, it seems that this is just something that works for some people, and doesn't work for others, which makes sense because it has about a 67 percent remission rate. I found a doctor in my area that prescribes LDN, thanks to somebody I met off of another forum. I'm going to call them tomorrow to try and set up an appointment, wasting no time. Although if everything works out, I probably won't start LDN for about another month because I had a remicade done about a month ago and I guess it takes a few months for that to get totally out of your system. I'm a realist I know there is a huge chance this does absolutely nothing for me but if it does work man oh man. Lets just say it's been a very very long time since I've had as little as two BM's in a day which were 10's even with remicade. If it can do ANYTHING positive for me I will be happy.
09-21-2009, 05:01 PM   #82
Kev
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My BM's currently rate a 10 out of 10.. But that isn't always the case. For me, LDN does the trick IF I eat properly, add vitamins, supplements and probiotics to my diet. It also depends on rest, etc.. IF I get ill (like a bad flu or severe cold) then my system goes wonky for a while. It also seems to depend on my smoking. My trial last year quitting cigarettes set me back months... That's the downside of LDN. It is your reset immune system that does all the healing, and it can take its own sweet time, and your immune system sometimes can simply be overwhelmed with tasks.
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-28-2009, 10:17 PM   #83
RobK
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Naps22,

I'm glad to hear you were able to find an open minded doctor. That's not easy these days.

I had my doubts about LDN but I figured I'll give it a serious try for 6 months and my GI agreed to monitor me through the process. Before started LDN I was on Specific Carb diet and was doing better but still had to rely on prednisone once in a while. Remarkably, I was able to get off prednisone just after 2 months on LDN and I have had no signs of a flare up. I've noticed slight improvements week by week...energy better, BM better and the beauty of it all is absolutely no side effects!!

My Crohn's was considered severe so that was why I decided to go on SCD diet....I find that in combination with LDN I'm not only stopping progression of Crohn's I feel like I'm actually healing. I strongly recommend the diet...it's a huge commitment but the results are amazing and the great part is down the road I will actualy be able to start introducing foods back into my diet. As for LDN, I'll definately be taking it for life!!

RobK
09-28-2009, 10:55 PM   #84
D Bergy
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Great news Rob.

I am happy you are doing so well. My results were not as dramatic, but I was not as ill as you were to begin with.

You also confirmed my hypothesis that the severity of the disease should not be a factor in whether to try it or not. When it works, it works and severity does not indicate what kind of results you will have.

Thanks for the update. Reports from users, good or bad, help everyone here to learn a little more than before.

Dan
09-29-2009, 12:40 AM   #85
Naps22
 
RobK said:
Naps22,

I'm glad to hear you were able to find an open minded doctor. That's not easy these days.

I had my doubts about LDN but I figured I'll give it a serious try for 6 months and my GI agreed to monitor me through the process. Before started LDN I was on Specific Carb diet and was doing better but still had to rely on prednisone once in a while. Remarkably, I was able to get off prednisone just after 2 months on LDN and I have had no signs of a flare up. I've noticed slight improvements week by week...energy better, BM better and the beauty of it all is absolutely no side effects!!

My Crohn's was considered severe so that was why I decided to go on SCD diet....I find that in combination with LDN I'm not only stopping progression of Crohn's I feel like I'm actually healing. I strongly recommend the diet...it's a huge commitment but the results are amazing and the great part is down the road I will actualy be able to start introducing foods back into my diet. As for LDN, I'll definately be taking it for life!!

RobK
Rob,

Glad you are doing so well. SCD diet is huge I know it is. I was on it for about 4 months and I felt the best I've felt in a long long time, and was on ZERO MEDICATION. Energy was up, focus was better, BM's weren't perfect but they were getting there. Problem was I lost about 20 lbs, so I weighed about 120 lbs at 5'10, and the diet was just too strict at the time. I'm in college right now going for a double major and I simply don't have the time to prepare every meal for myself on my own. I'd like to go on the diet again, but damn, I HATE being skinny. Once I start LDN in a few weeks (if I can get a script) I'll definitely change my diet to something close to SCD, just not fully SCD.
09-29-2009, 10:00 AM   #86
DMS
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Hey Naps, I don't know what you were eating on the SCD but if you can tolerate (and like) coconut, it can be a great source to get your calories up. Coconut Ice Cream has lots of good fat in it (made only with coconut milk and honey and fruit), find a source for organic coconut milk and add it to smoothies, fry your eggs in coconut oil, add coconut oil and coconut milk to your pancakes. My son is on SCD and has gained 9 lbs in 5 weeks (also started LDN 5 weeks ago).
He hated the texture of the almond flour so we now make muffins and cookies and stuff with coconut flour.
The combo of LDN and SCD has been amazing for my son, he still has an abscess and fistula but even that seems to be getting slowly and steadily better.
09-29-2009, 10:27 AM   #87
D Bergy
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Coconut is also antibacterial, which can be a great help in itself. Coconut Oil can be eaten for energy, as it has a huge amount of calories.

I like foods and supplements that serve many purposes to help Crohn's. Coconut is a great one.

Dan
09-29-2009, 01:01 PM   #88
DMS
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hi Shantel,
try this thread, you posted re opiates here.

http://www.crohnsforum.com/showthrea...ghlight=immune

(I think I pasted this right, if not, search immune booster)
09-29-2009, 01:50 PM   #89
DMS
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here are a couple of sites that tell you exactly what LDN is

http://www.elaine-moore.com/MyArticl...2/Default.aspx

http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html

I don't believe it is an opiate according to these sites and everything I have read about it, this is what it says on the first site.

LDN blocks the opiate receptor for approximately 4 hours. This intermittent blockade causes a rebound effect resulting in a dramatic increase in endogenous opiate production

Hope that helps a bit.
09-29-2009, 06:55 PM   #90
D Bergy
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Being that LDN blocks opiate receptors, we have to stop using it if we need to take any opiate based pain killers.

That is why it was used for drug abuse. You can't get a high when you block these receptors.

That is a problem for those that need pain killers to control Crohn's symptoms.

Dan
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