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The only times I ever noticed any.. hiccups.. slight backsliding... was either when the pills were near the end of their potency usefulness... OR.. if a bug of some kind over-taxed my immune system. And that was in the early days... its been rock solid steady for years now. So, I'm thinking (dangerous for a guy my age to try new things) that with time my immune system got better and better. Just a wild assed guess on my part.
 
Hello everyone. I have been reviewing your postings for several weeks and today got my prescription for LDN and the pharmacy is making it according to specs (4.5mg, no calcium carbonite filler and immediate release). I am 42 and have crohns in the anal/rectal region. So pleasant. It has never really altered my lifestyle and has been more of an inconvenience. However, the last few months I have been in a flare. I have went through a pretty stressful time so that may have caused it. My scopes have shown ulcerations in the rectum and I suffer from proctitis. I currently have a stricture issue in the anal/rectal area. My GI is great and currently has me on steroid enemas and proctofoam and canasa suppositories. The last couple of weeks have been great. However, I know I cant stay on the steroid enemas forever (I wish I could) and that's what scares me. A young CRS recently told me that if I did not take Remicade or at the very least Imuran then she would be removing my you know what within a year or two. My GI doesn't think it is as pressing as what she indicates and told me not to go see her anymore (went because of a small fissure that has now healed) and she just has finished her residency so maybe she lacks experience. Nevertheless, it is still scary.


Back to the point. I have read your posts and appreciate your information and have said a prayer for all of us. I have many questions about LDN as I am skeptical by nature. Here are some of my thoughts and questions.

1. Has anyone here actually experienced mucosal healing? I know Kev has but anyone else.

2. Why does it take so long to work? In Smith's trials didn't they have improvement by 8 to 12 weeks?

3. In regards to Dr. Smith. I am skeptical that she has something to gain from the outcome of the clinical trials and wonder if there are any trials from any other Dr. or entity.

4. Is it ok to take this 4.5 mg dose while taking steroid enemas.

5. Has anyone else had rectal issues which LDN helped.

By no means am I trying to discount this therapy. I feel like I know all of you and find each of you that have posted very pleasant and honest people. I just want some feedback before I start taking it. I don't want to discontinue what my doctor has prescribed as I trust him and at the same time I do not want to take anything that will make it less effective. But if this is a treatment that cannot hurt then why not take a chance? Thanks in advance and sorry for long post.
 
tincup! Best of luck. Here's my not-very useful feedback:

1. I can't say, because I haven't been scoped since beginning taking LDN.

2. Not sure why it takes so long to work -- in fact, it might work right away, but just really slowly. It's kind of a gradual thing. I noticed a difference at about the three month mark, but it was so gradual that I really had to think about it (i.e. "gee, I was really a bit worse off three months ago, I guess"), and beyond that point the gradual improvement continued. I feel pretty solid overall now, despite the occasional "off" day.

3. No idea -- Jill Smith and Dr. Zagon are the only two names I've heard associated with LDN, and although I could be mistaken, I think that perhaps they worked together?

4. Not sure about enemas, but taking a low dose of pred (10mg) seems to be OK. I've taken budesonide (Entocort) while on LDN, and that's also a corticosteroid that's designed to release in the intestine. I would hypothesize that steroid enemas would be similar, just acting in a different area... but I'd check with a GI just to be safe.

5. N/A

Keep us posted, for sure.
 
1. Yes, my son had mucosal healing. I'm not sure how long it took to achieve but I can tell you he had scopes after 8 months on LDN and there was no sign of active disease only pink healthy tissue.

2. Personal opinion is it takes so long to heal as I believe it heals from inside out just like a really deep cut or surgery it takes a while for the body to completely heal itself.

3. TNI Biotech has purchased the orphan patent rights to LDN and last press release they had FDA approval to begin Phase III testing which is supposed to happen in 2014.

4. According to my son's GI it is okay to take while on steroids.

5. Sorry no help on the rectal issues, my son's locations are TI, Large Colon, Small Intestine and Duodenum
 
Guys thanks for your responses. It helps to know that it has helped you and that is why I am going to go for it. I just hope that my assessment "it can't hurt" is correct. I will keep you posted and look forward to more replies.
 
It really can't hurt, in the sense that there is a really low side-effect profile -- it probably won't cause you any harm in that sense. That said, I would offer one disclaimer: If you're using it instead of other medications that might get the inflammation under control faster, you might be setting yourself up for problems if the LDN doesn't work, and you end up leaving a flare unchecked for a significant amount of time. If someone had really super severe IBD, it might be in their best interest to get it under control quickly in order to avoid further complications (e.g. scarring, etc.). I think that in your case, however, you're also treating with corticosteroids, so it sounds like you're approaching this from multiple angles.
 
Thanks jdtm

I am definitely continuing my current treatment. Also Kev thanks for all of your input in this forum.
 
Thanks JDTM

I will definitely stay with my current treatment. Also Kev I appreciate your input on this forum. Your Ldn posts have been encouraging.
 
Hi, I have crohns and ms. I am telling my Doc I want to start 4.5 of LDN. Do u guy's think it really helps? Running out of options.:)
 
Julies

I have just started so i dont know. Just been on it for a week and may have gotten worse just a tad. I had went 15 days with no signs of bleeding and today saw a small trace. I am on cortenema and proctofoam as i only have rectal involvement. The bleeding could have come from a small fissure i have been dealing with and not my crohns. I wish i could tell you more and offer some help. I just decided to try this before starting the big guns or surgery and thought it could not hurt. I am very depressed today as it appears i have taken a step back. I am sure Jdtm, kev and joyce can help you more.
 
Hi Julies-child, I'm a member of a facebook group for LDN, and there are a lot of people there using it for MS. I think most of the MSers start slow with 1 mg and then go up monthly. My daughter has crohn's and her doc started her slow as well. Started 1 mg and then went up by 1mg every week. We go back to her doc tomorrow for blood work. Hopefully her sed rate and crp will be good, however she tested positive for lymes disease and co infections, so that's a whole nother ball of goo we will have to address.
 
tincup said:
Julies

I have just started so i dont know. Just been on it for a week and may have gotten worse just a tad. I had went 15 days with no signs of bleeding and today saw a small trace. I am on cortenema and proctofoam as i only have rectal involvement. The bleeding could have come from a small fissure i have been dealing with and not my crohns. I wish i could tell you more and offer some help. I just decided to try this before starting the big guns or surgery and thought it could not hurt. I am very depressed today as it appears i have taken a step back. I am sure Jdtm, kev and joyce can help you more.
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When I went on LDN I felt like absolute hell for the first couple of weeks. I was bleeding, in a lot of pain and could not get out the bathroom. I wanted to give it up and go back to my painkillers but my husband made me keep going.

I am up to 2mg and the difference is pretty spectacular. I just went a couple of weeks on holiday with no pain and entirely normal bowel movements. I have had 'flare ups' with mild pain and the odd loose bowel movement but nothing serious, and no bleeding. The only thing I can't get rid of is nausea but I am still at a low dose, my doctor prefers to step up slowly and he thinks it will all get better when I reach my 'threshold' since I've responded well so far.

Anyway, long story short, even though you feel like hell in the beginning, persisting can pay off!
 
Isgs

Good to know and thanks for some encouraging words. I have got worse it seems but just on my 8th day. I will not give up on this. I just hope in a couple of weeks i am sorted out. I jumped right in on 4.5 mg so i am sure there will be an adjustment period.
 
Hello! Back again!

I had been taking LDN for just over 2 weeks. I thought the pains I was having we're "it gets worse before it gets better" and so kept toughing it out. It was only when I went to the GP to check my B12 and folate results, that the blood tests showed my blood tests were off the scale. I was urgently referred to the hospital, where I have been for the last 3 weeks. I had a large abscess on my intestine, 15cm x 2 cm and it had blocked my right kidney. I don't think the LDN could have competed with that! I didn't.t realise how I'll I had been despite not being able to go out and couldn't do the day job. I had the abscess drained by CT technology and ultrasound. I'm home now but still have the abdominal drain attached as a precaution. Now resumed LDN although I don't think the consultant has much faith that it will work, and am on antibiotics for a further 4 weeks until I see him again.

I have a nuclear scan booked for MondAy to check my urinary function and hope that the blockage has gone, otherwise it. Oils mean a stent has to be inserted or a drain put in.

Has anyone had anything similar happen - and will the fistula heal itself with the LDN. The consultant hasn't said anything about this to me and, surely if the fistula does not heal, this could happen to me again?

I still have some low grade pain in the centre of my stomach and kidney area, which I didn't have when leaving hospital. Beginning to become paranoid now!

Sally
 
Hi Sally

Sounds like you've been thru the wringer. Wish I could offer some optimistic news, but I 'think' the a/b's will delay LDN from kicking in. A/B's knock the stuffing out of the good biotics too... and those puppies are the backbone of our immune system, so if they go down... so does the immune system... and that slows LDN's rebound effect from working ON the disease. That is my rudimentary and completely uneducated take on the medical mechanics at work. Sooooo, if it plays out that way (LDN being even slower to work than normal, you might want to wait and see what happens AFTER the A/B's have worked their way out of your system AND your good bacteria rebounds) then that may be what is going on. Just my wild assed guess as to a further possible hiccup in your treatment plan.
 
Sally

I am sorry you are suffering but hopefully you are on the mend. I am glad Kev responded. He, Joyce and JDTM know their stuff. I am a newbie in regards to LDN (just over 3 weeks). I wish i could tell you that it is helping but at this point I cannot tell any difference. But i am going to continue to take as most on here say it takes weeks before it helps. That seems strange though since most clinical trials were for only 12 weeks. Regardless I would not depend solely on Ldn at this stage. Take your doctors advice and use Ldn in conjunction with your other therapy. And by all means let your doctor know you are using ldn. I know i have not really assisted you in any way but hang in there and things will get better.
 
Hi Kev and Tincup,

Thank you for responding. I have been taking probiotics, which I always do when taking antibiotics, so praying that something works with the LDN, as the doctors over here do not have much experience of the drug for use with Crohns, and I fear will use any excuse to put me on something else.

I am not on any other treatments other than the antibiotics - that will be for a total period of 7 weeks, by the time I see my consultant again. I hate taking them as they always make my Crohns flare. I believe it was antibiotics which caused me to have Crohns in the first place (but that is just my theory)

I will keep on the LDN and hope that it is the drug for me.

Out of interest Kev, do you think the LDN can heal fistulas?

All the best and a Happy New Year to you both.

Sally
 
Joining. Thanks for this group. Started LDN at 3mg then upped to 4.5mg two weeks ago. Flaring now. But initially felt ok. Hopefully it will work for me too!!!! Last resort...
 
I went to see my shrink today for my bi-annual checkup and she asked if there were any new medications I was on. I explained that I was on LDN and she got real excited and asked me where I got it, who prescribed it etc. Anyway, she said she has been looking for somewhere to get it and that she wanted to prescribe it to some of her patients that were having a real hard time with traditional meds. She went on to tell me that according to research that it can help those with depression that is not responding to other medications. Who knew? She was so thankful that I was able to tell her where to get it compounded too. Anyway, I guess I am getting a double benefit from LDN.
 
Hi again, fellow LDN-believers. I was diagnosed with Crohns' in May of 2013 and started LDN in September of that year. I didn't really notice much of a difference until I cut out the Starbucks hot chocolates (crazy!), and then I started to feel pretty much like I used to feel pre-Crohn's - hooray!

BUT . . . during the last month, I have had one virus immediately following another virus and I have been sick almost the entire month. I got a bad cold, was healthy for two days, got a worse cold, was healthy for two days, and got a stomach virus (the worst I've had for at least 10 years - and I am not over this one yet). I am not having digestive problems anymore, but this is almost as bad, I think . . . don't know what's going on and I am feeling sad and frustrated. Before this, I haven't had a horrible virus for years, and now I'm catching everything that comes along (I work with kids, too, so it's especially annoying not to be more resistant!)

It does make me wonder if LDN is helping my immune system to reset - and possibly become less over-reactive. And maybe I will get sick more often for a little while before it gets settled down. It seems a little strange that it took 5 months, if that's what is happening, but I guess that might follow the pattern of LDN taking a long time to be effective.

Has anyone else had a similar experience with falling HARD for every virus that blows your way after starting LDN?

Thanks to each of you who has commented or shared your experiences or questions here. I read everything and value having a group of people who are going through similar stuff.

-Christie
 
I seem to recall, in the early days, that I'd get colds, flu, etc... and it would hit me really hard... AND that my IBD symptoms would increase... like a mini flare... but that if I rode it out, things would go back to being A-OK. These days, IF I catch a cold, flu, whatever, my body seems able to throw it off in record time (I don't know, but I think that aspect of it is some remnant of the IBD... I still have an over -reactive immune system). None of my IBD symptoms have come back in recent years (bear in mind I've been on a 6 + year hiatus of sorts from my disease) yet my immune system still seem to be over... vigilant??

Oh, and a little bit of a retraction, of sorts. Last year I quit smoking, and suddenly I had sleep disruptions... which I initially attributed to LDN. I changed the time I took my LDN (used to take it just before going to sleep for the night) to early evening, after my supper.
Slowly, the sleep issues went away... I recently switched back to just before going to sleep... and no sleep issues. So, I can't honestly determine whether I was experiencing the 'sleep' issues due to LDN, or due to nicotine withdrawal... or a little of Column A N B.

In any event, I was WAY wrong to initially 'pooh, pooh' (Ooooh, should a Crohnie even say that?) sleep disruptions as a 'bad' side effect. I commiserate with anyone who has had the 'pleasure' of sleeping awake...

And, if I can help anyone, anyway, with LDN, drop me a line, tag me, or private message me
 
I have recently been diagnosed with Crohn's, I have a 3cm stricture in my TI also. I am on no medications other than a stool softner d/t constipation from the stricture. They want to put me on Imuran and I am not going for it...scared of side effects!!! I asked my GI about LDN (well, the nurse practitioner) and she said "we don't use that" but when I asked why she couldn't give an answer. I REALLY want to try LDN but don't know how to find a doctor that will rx it. I live in Southern Indiana....any suggestions?
 
Hi

I found a doctor that does chelation therapy, any MD into that type of treatment would be a good place to start. I dropped off the research articles from pubmed on LDN trials for crohns and got a call back in a couple of days saying he would prescribe this for me.

I will caution you, you are going to have to know how to dose yourself, like starting off at 1.5 mg and working up to 3.0 mg and going to 4.5 mg. For example Dr. Zagon has a video that says he does not know if you will get a positive result taking it once a day like most people do, or perhaps you need it every other day or even twice a day. You cannot expect a chelation doctor to "know" anything about dosing or any side effects that can occur. You will in effect become your own doctor. so there is definite risk and you have to know all the ins and outs yourself.
 
Thanks for the info. ....I am more than willing to take the challenge just have to find a doctor willing to take it with me!!
 
Hi guys,
My son has FINALLY started LDN !!!!!! Yippee:) after pushing for a long Time his new specialist has agreed to let him start 3 mg . My son has just been hospitalized for 2 and a half weeks with a 10 cm abscess in his abdomen which has not budged at all after being on triple antibiotics this whole time :( we were getting pretty desperate and I have been researching this drug for a long time. He has only been on it since Tuesday but does seem to have a lot more energy ( not sure if this is because of the LDN or just happy to be home :) we have been through hell the last couple of weeks :( now hoping this drug I have dreamed of giving my son gives him some remission so he can put some weight on and finally grow. Please everyone cross your fingers and toes for us.
 
Hi Wendles,

Great news! I hope it works for your son. I have been on LDN for 3 months now and think it is working for me. Small changes but I am now putting in weight and my blood results are all in normal range. Long may it continue.

It seems that it takes about 3 months to see any changes, so don't give up!

Let us know how it all goes.

Sally
 
Wendles said:
Hi guys,
My son has FINALLY started LDN !!!!!! Yippee:) after pushing for a long Time his new specialist has agreed to let him start 3 mg . My son has just been hospitalized for 2 and a half weeks with a 10 cm abscess in his abdomen which has not budged at all after being on triple antibiotics this whole time :( we were getting pretty desperate and I have been researching this drug for a long time. He has only been on it since Tuesday but does seem to have a lot more energy ( not sure if this is because of the LDN or just happy to be home :) we have been through hell the last couple of weeks :( now hoping this drug I have dreamed of giving my son gives him some remission so he can put some weight on and finally grow. Please everyone cross your fingers and toes for us.
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Good news! I feel better and have lower calprotectin scores on 3mg LDN than on 50mg prednisolone! Crazy. It is not a miracle drug but it's been pretty amazing for me. I especially notice the increase in energy :) For the first time in years I am holding my weight, don't have to worry about having an accident in public..! Hope it works for your son.
 
My uneducated guess would be.... if LDN worked for you, then the disease would stop, and the issues from it would go away. I had a fistula, it healed. The only remaining issue(s) I have are my internal scars. I hope this helps you reach a decision whether to try it or not.

I'd like to take this opportunity to say... I 'advocate' for LDN, simply because I feel that I 'owe' my recovery to it... but it isn't a perfect solution. You probably will struggle to find a doctor to prescribe it... then you need to find a supply... someone who knows how to compound it... AND you have watch out for stale supplies of LDN. Other than that, it offers a way to stop the disease, with a high success rate, and relatively minor side effects. But, you have to keep taking a pill... every night, for the rest of your life.

There recently was an article about a doctor in Australia who claims to be able to cure IBD with fecal transplants. I would welcome a 'cure'... just to end my dependency on a pill. LDN is not a cure... but it is an effective, safe, and practical form of treatment. OK?
 
Wendles

I am praying for your son's recovery. I have been on ldn for over 3 months and my last scope showed some improvement. I am also on lialda and i also alternate steroid enemas and canasa nightly. Not sure what is helping me or if it is the combination. It is important for him to stay on all his meds during this time. Keep us updated.
 
Hi everyone, thanks for the support and encouraging words it does mean a lot :) Trent is doing well no pain, great sleep, slowly getting more energy. I'm trying not to get my hopes up but little things happen everyday it's very exciting. Just wanted to let you all know so far so good. Thanks again, Wendy
 
Just remember ldn is a slow process and often it gets worse before it gets better. Hope Trent's progress continues!
 
I echo that 'warning' whole heartedly. LDN won't give overnight results, and a person can get MUCH worse before things slowly, gradually, almost unperceptively.. get better.

If someone is looking for, expecting.... or in NEED of an overnight, EUREKA treatment, it is not LDN. At least that was my experience. If you try it, be prepared for a rough start.
 
I'm going to be trying to get my GI to prescribe LDN instead of escalating to biologics, how hard was the fight for you guys? In my experience getting what you want out of a doctor can be like pulling teeth, especially when their way gets them a kickback for getting you hooked.
 
Orchid said:
I'm going to be trying to get my GI to prescribe LDN instead of escalating to biologics, how hard was the fight for you guys? In my experience getting what you want out of a doctor can be like pulling teeth, especially when their way gets them a kickback for getting you hooked.
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I never bothered to ask - I paid to see a naturopath and he prescribed it for me.

Best move I've ever made. I have a journal on here where I go into detail about my experience, I'm going deep into remission and I have a lot of reasons to believe the LDN has a huge part to do with it.
 
I'm leery of using the term 'remission' in connection to LDN. I take a pill, my symptoms stay away... if my pills get stale, symptoms creep back in. If I were truly in remission, I wouldn't need to keep taking 'fresh' pills.. I guess my point is... for those considering LDN ... that it is a 'treatment'... not a miracle 'cure'. Does that seem a valid position?
 
Hmmmm I am on 3mg, I am not going any higher at the moment as I previously have experienced nausea at higher doses. It may be coincidence but I need a break before I try again cause it was pretty horrible.

Anyway, do you think anything that disrupts the immune system can cause a flare? Don't get me wrong I use the term 'flare' loosely! Still nothing like what I experienced before.

I went to the dentist last week for a few fillings (and resulting toothache) and that night was unwell during the night. I wonder if my immune system kicking into gear has messed with the LDN's function a little, almost in the same way as if I caught a bug.

It's a novelty to me that for the first time I'm having to put in effort to lose weight! :D haha!
 
lsgs said:
Hmmmm I am on 3mg, I am not going any higher at the moment as I previously have experienced nausea at higher doses. It may be coincidence but I need a break before I try again cause it was pretty horrible.

Anyway, do you think anything that disrupts the immune system can cause a flare? Don't get me wrong I use the term 'flare' loosely! Still nothing like what I experienced before.

I went to the dentist last week for a few fillings (and resulting toothache) and that night was unwell during the night. I wonder if my immune system kicking into gear has messed with the LDN's function a little, almost in the same way as if I caught a bug.

It's a novelty to me that for the first time I'm having to put in effort to lose weight! :D haha!
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What painkillers were you given? LDN's action on opioid receptors messes with them quite a bit.
 
Ive heard that I cannot give him codeine we haven't needed any pain relief lately and hopefully we don't :) I will probably just give him Panadol liquid ( the kids medicine) this seems to work . Any idea on the codeine? Thanks for your posts in here :) I know we still have to watch things on LDN but I would say since we were first diagnosed in may things are going well. I am hoping this is the long term solution for Trent and I appreciate all the posts on LDN good and bad it is all information which I cannot get enough of. He went out bike riding today, mowed the lawns and didn't stay in bed playing computer games so today has been a great day. Good luck with the " weight gain" and stay well:) best wishes Wendy
 
I have been on LDN for about 4 or 5 months now. I am hoping that this stuff works but because of my type of crohns, I may not know for years if it worked. I do not have the normal crohns symptoms of flares and so forth, I just make masses of internal fistulas. It took 23 years for it to cause an issue and I had surgery to fix it. So I decided to not take methotrexate due to its side effects on the liver and put my trust in LDN. I hope it pays off.
 
I am so happy right now I can't explain, my ESR is down to 27. It was 51 prior to treatment. This totally reflects the improvement in my wellbeing.

LDN has given me my life back :) It is not perfect but it's as good as I'll get I think!
 
Orchid said:
What painkillers were you given? LDN's action on opioid receptors messes with them quite a bit.
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I've only been taking paracetamol.

I very rarely take dihydrocodeine and only ever at night with doc and pharmacies permission, tbh paracetamol is now more effective than dihydrocodeine for obvious reasons.

Wendles said:
Ive heard that I cannot give him codeine we haven't needed any pain relief lately and hopefully we don't :) I will probably just give him Panadol liquid ( the kids medicine) this seems to work . Any idea on the codeine? Thanks for your posts in here :) I know we still have to watch things on LDN but I would say since we were first diagnosed in may things are going well. I am hoping this is the long term solution for Trent and I appreciate all the posts on LDN good and bad it is all information which I cannot get enough of. He went out bike riding today, mowed the lawns and didn't stay in bed playing computer games so today has been a great day. Good luck with the " weight gain" and stay well:) best wishes Wendy
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My pain is at a level that can be controlled by infrequent paracetamol. Dihydrocodeine didn't even touch it before, I may as well have been eating sugar pills. Doc said pain was too severe for OTC painkillers to work?

I have been told you can take codeine based painkillers with a gap of 4-5 hours between taking LDN and the painkiller. To be quite honest though, it doesn't really work for me anymore.

Let's hope Trent doesn't need codeine again ;)
 
In the early days, if I got a bad bug or flu, my symptoms would rebound... very minor, but noticeable.. Now, my layman's guess as to what that stemmed from was that, thanks to LDN, my immune system was typically 'fighting' my disease... and continued to do so, unless it was overtaxed by periodic bugs. I mean, I'd been on steroids, other immune suppressors... and my GI tract was a wasteland (no pun intended).. so my immunity was at a low when I started. With the passage of time, my immune system built itself back up to pretty much normal. I never get these episodes now... can't recall the last one that I noticed. So, I think LDN let's us get stronger, and stronger, and stronger, but it is just so gradual a process that we can't see the progress... except in hindsight. That is what I truly believe. However, I am loathe put it out there... because it is all anecdotal. Total conjecture on my part. I have no training, no medical qualifications of any kind, and the last thing I want to do is introduce 'mythology' or 'urban legend' into the LDN storyline.

Does that make sense?

The only reason I came forward with it is... if LDN is working for you now, and it is doing everything you thought it would and then some... then if your experience mirrors my own, you should continue to improve to the point where you might forget you have IBD.
 
Hi,

Been on LDN (nothing else) for about 5 months, with a break of three weeks, whilst in hospital for an (enormous) abscess. At my last consultant's appointment last week, whilst he could still feel inflammation, he said he was both surprised and amazed at my progress. He didn't want me to take LDN. LDN working? I think and pray so!

Sally
 
Hi Sally ,
Great news keep you the good work :) I love hearing the positives on LDN. Trent is doing really well he has now put on 2 kilos since we were in hospital. His energy levels are fantastic ! He has had no pain and no complaints at all he is like a different kid . I sure do hope its the LDN, but don't want to get my hopes up yet. My best wishes to you, take care and keep us posted :) Wendy
 
Hi Guys! I just started LDN a couple of weeks ago and, as expected, have gotten a little bit worse. I'm sure it's different for everyone but I'm curious to know: for you all who felt worse for a while, how long did that last before you started to feel better?

Thank you!
Isabelle
 
isabelle said:
Hi Guys! I just started LDN a couple of weeks ago and, as expected, have gotten a little bit worse. I'm sure it's different for everyone but I'm curious to know: for you all who felt worse for a while, how long did that last before you started to feel better?

Thank you!
Isabelle
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I definitely got worse. This was not helped by coming off dihydrocodeine at the same time. I felt like hell for probably a maximum of 2 weeks. I wanted to stop taking the LDN and go back to painkillers, but my husband would probably have divorced me if I gave up, so I persisted. I bled more than ever, visited the toilet more than ever, and was in agony.

And then... I would think about a week later, things improved and continued to improve.

I can honestly say I take paracetamol about once a week. I have literally one stomach cramp once or twice a week. I think the last time I had any problems with my bowels was at least a month ago. When I get a cold, or a bug, it seems to cause a mini flare but let's just say a bad day now is better than a good day 2 years ago ;)

The only side effect of LDN? My doctors absolutely hate me for taking it. I thought doctors should be happy when their patients feel better ;)
 
Ha! Then I want my doctor to hate me too! Thank you so much lsgs... I need the reassurance and encouragement to stick it out. I'll keep you updated. What is your LDN dose? I'm taking 3 mgs now and haven't decided whether to try to work up to 4.5 or not.
 
isabelle said:
Ha! Then I want my doctor to hate me too! Thank you so much lsgs... I need the reassurance and encouragement to stick it out. I'll keep you updated. What is your LDN dose? I'm taking 3 mgs now and haven't decided whether to try to work up to 4.5 or not.
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I'm on 3mg. I'm sure I would benefit from a higher dose but I'm feeling well enough. I was on 4.5mg and had a horrific episode of nausea. I am pretty sure I had a bug but it's left me a bit apprehensive about upping my dose again. I feel well enough, so there's no point in increasing the dose for me :)
 
Hi Isabelle,

My consultant hates me for taking LDN too! Although he did admit that something I was doing was working! I am taking 4.5 mg.

One word of warning, my symptoms got worse too - and then carried on getting worse over a matter of months. I thought it was the LDN and carried on regardless. I ended up with a massive abscess on my intestine and it was blocking my kidneys. So, if you do get worse and it doesn't improve over 3 or 4 weeks, then go back to the doctor. The benefit of hindsight is a wonderful thing!

However, I am still on LDN and all is going well now. Definitely worth a try.

Look forward to hearing how you are doing.

Sally
 
The studies were done at 4.5 mg on adults. A body mass formula was used in pediatric trial. If you are not using 4.5 mg... and nothing is happening... good, bad or otherwise, then my guess is that nothing is happening. 4.5 mg is reportedly the minimum dosage to trigger the essential 'rebound' effect. My laymans understanding is that experiments were done at higher doses, then they started reducing the dose. A lower dose may be easier for some people to tolerate, but what is the sense if it is too low to do any good.

I'm not here trying to rain on others parades... I'm merely trying to maximize the success people have with LDN. And, no... I don't own any stock in TNI Biotech. I thought about it, but if I go that route... then my motives might be questioned. I think I'm passing up on a fortune...
 
Hi everyone, sorry disappeared for a while but Trent was admitted back into hospital with his abscess leaking into his bladder :( anyway cut a long horrible story short he now has a temporary stoma. The operation was done on his 13 th birthday they removed most of the abscess. He got this abscess before he started the LDN. After coming off all the painkillers I have him back on LDN again. Hopefully he can put his weight back on again and start healing again. The surgeon said it wasn't his crohns that was causing the problem he also had a kink in his bowel his 14 cm of scarred small intestine is supposedly quite good :) take care everyone x x
 
Hello All! Thank you for your advice and support! Great news! I'm doing great! I'm totally off Cimzia and slowly tapering off Entocort and my guts are doing well. I had a week and a half of feeling slightly worse but I'm now feeling shockingly good thanks to LDN and medical marijuana. The even better news is that I've been ingesting less and less marijuana oil because the LDN seems to be doing the trick on its own.

I watched a really interesting video of Dr. Bernard Bihari (the doc who pioneered the use of LDN) on youtube (https://www.youtube.com/watch?v=x54Jccr8GT8). I was looking for answers because although the LDN was working, I was hardly sleeping and was feeling agitated on 3 mgs. He said that if LDN is causing insomnia it simply means that you're taking too high of a dose because some people are much more sensitive to naltrexone than others. He said you could lower your dose as low as 1.75 mgs--and that 1.75 was the lowest dose that was therapeutic. He felt like 3 mgs was an adequate dose for most people and that 5 mgs was the maximum people should take. I took a couple of days off from taking the LDN and I've started back at 1.5 mgs. I'm going to raise my dose to 1.75 in a couple of days. I'm hoping to work up to 2 mgs and stay there. I tend to be super sensitive to drugs so it's a relief to know that LDN can work at lower doses. Just to be clear, I'm not trying to say that 4.5 mgs is too high of a dose, just that people who can't tolerate 4.5 can get the same benefits on a lower dose.

lsgs: thank you so much for your support and for sharing your story.

SallyJane: that is very wise advice!

Kev: thank you for sharing your wisdom and experience!

Isabelle
 
isabelle said:
Hello All! Thank you for your advice and support! Great news! I'm doing great! I'm totally off Cimzia and slowly tapering off Entocort and my guts are doing well. I had a week and a half of feeling slightly worse but I'm now feeling shockingly good thanks to LDN and medical marijuana. The even better news is that I've been ingesting less and less marijuana oil because the LDN seems to be doing the trick on its own.

I watched a really interesting video of Dr. Bernard Bihari (the doc who pioneered the use of LDN) on youtube (https://www.youtube.com/watch?v=x54Jccr8GT8). I was looking for answers because although the LDN was working, I was hardly sleeping and was feeling agitated on 3 mgs. He said that if LDN is causing insomnia it simply means that you're taking too high of a dose because some people are much more sensitive to naltrexone than others. He said you could lower your dose as low as 1.75 mgs--and that 1.75 was the lowest dose that was therapeutic. He felt like 3 mgs was an adequate dose for most people and that 5 mgs was the maximum people should take. I took a couple of days off from taking the LDN and I've started back at 1.5 mgs. I'm going to raise my dose to 1.75 in a couple of days. I'm hoping to work up to 2 mgs and stay there. I tend to be super sensitive to drugs so it's a relief to know that LDN can work at lower doses. Just to be clear, I'm not trying to say that 4.5 mgs is too high of a dose, just that people who can't tolerate 4.5 can get the same benefits on a lower dose.

lsgs: thank you so much for your support and for sharing your story.

SallyJane: that is very wise advice!

Kev: thank you for sharing your wisdom and experience!

Isabelle
Click to expand...

Such a great feeling isn't it? I remember realising I no longer needed painkillers (or imodium!) anymore. Pretty awesome feeling.

Hope things continue to go well :)
 
Hi guys,

I have been on LDN 4.5mg for a couple of years now, and have had no major flares. So I went to my GI just because I had not been in years (he didn't prescribe the LDN, so I had to find a GP that would) and he wanted to do a CT scan. Apparently, the scan showed mild inflammation compatible with Crohns. So I have to go back soon to discuss medications, probably 6MP or one of those. My question is- are any of you taking both? And is "mild inflammation" really a good enough reason to go on another medication?
Thanks for any advice!
 
Mild inflammation left simmering can cause serious damage and shouldn't be left untreated or under treated. This can set you up for malabsorption issues(depending on location) due to scarring, strictures that may require surgery and sometimes abscesses.

I believe there are some members that have taken both an immunosuppressant like 6mp and LDN. I'm sure someone will be along shortly with their experience.
 
Thank you! Mine is in the ileum, and I have lots of vitamin deficiencies, especially Zinc and vit D. I just wish the immunosuppressants didn't come with so many side effects- I don't do well with most meds.
 
No problem. I meant to say the malabsorption can be due to inflammation or scarring my fingers are just faster than my brain.

I understand your concern about side effects from meds I had those same concerns when it came to my son's illness. It was scary to think about but nothing has compared to the fear I've had from the meds not controlling his illness and progression of his disease.

Hopefully, the GI and you can work together to find a treatment for you that your body can tolerate.
 
Hi all,

Just started LDN. Only at 1.5 mg to try as I am sensitive to practically all medications. My Gastro doc is retiring and I have been on Librium and Librax to help control my Crohns since 2002. I had a bad bout with 8 hours of bleeding in 2001 and was on Prednisone for a year which killed my bones (12% below fracture level in spine). I also take Culturelle and Omega 3 fish oil. These work pretty good most of the time with just a few flares.

My doc says I will not be able to find another doc to let me have Librium and Librax as it is not standard treatment for Crohns but works for me. Also no one believes in LDN. Truthfully, I am scared stiff now as I am allergic to sulfa, asacol, steroids now and can't take biologics. Worst of all, I am allergic to carba mix which is in rubber (synthetic as well as natural) so even non latex. There is rubber in the bends of all scopes so never had a colonoscopy and can't do barium. My old doc had a rigid sigmoidoscopy with no rubber so was able to check as my Crohns is in the sigmoid part of the colon -- they just are not around anywhere anymore!!!! I will probably be booted right out when they find this out as everyone is scope happy.

Does anyone know how to approach a new GI doc asking to stay on Librium, Librax and LDN?? Any help would be appreciated as I have an appointment coming up. I hope I don't have to go from doctor to doctor to try to find one with an open mind.

Thank you for any help.:hug:
 
Hi everyone! I have Crohn's and Hashimoto's and have been lurking on this site for a while to learn about LDN.

Going to the bathroom 30+ times a day and not remembering the last time I have been on vacation or had a life because of this is why I was seeking help.

I did as many of you suggested. I found a local NP and then used Skip's Pharmacy. My LDN is now here and I am to start tonight. I was very afraid to start yesterday and had some great help and advice from other Members. Now I wish the day would be over and I am READY! :)

My NP is starting me on 2.25 for a few days and then on the the full 4.5.

Thank you for being here and for helping me walk through "taking control of my own health"

I appreciate you all.

Tonya
 
Tonya, I wish you the best of luck! If you've been reading up on LDN here, I'm sure you already know this, but just as a reminder: For many of us, the improvements seen with LDN are very gradual. Some people have also experienced feeling worse before they start to feel better, so keep that in mind as well. Have patience, and don't expect it to work right away. Keep us posted on how you end up doing!
 
Question for those with experience. We're seeing an alternative doctor today in the hopes of getting a prescription for LDN (of course the GI would not prescribe it). Our son is 10 and thus far his only symptoms have been poor weight gain and occasionally feeling full. He has been on Entocort since early March. So he's never really had the "typical" Crohn's symptoms. Should we expect him to experience symptoms when starting LDN in the interest of "it may get worse before it gets better"? Just wondering what to expect. We'll of course time it to start on a Friday night so we have the whole weekend to see how things go.
 
MamaHenn

I also have Crohn's and am on Entocort. I start LDN tonight and was told that it will get a bit worse before better. But mine is all bathroom 30+ times a day. Since he is not having that problem, hopefully not.

Thank you JDTM. I promise I am in for the long hall. I do understand it won't cure me overnight and my NP said everyone is different in how long it takes to react. The way I see it, I was not getting better without it :)
 
OK, keep in mind that this is pure conjecture from someone with no medical training. Just a person with the disease who has come up with... a plausible theory.. not based on fact, just my own experiences. Here is my 'guess' over the whole 'worse before better' idea.

In my case... I'd stopped all other Crohns drugs... was even going thru pred withdrawal. So my body had had taken away all the usual methods to fight the disease. Give IBD a chance like that... hey, anyone who has come off a pred taper can probably tell you just how fast the disease rebounds. So, in a case like that... no other typical drugs fighting the Crohns... or UC.. or both... then you can probably be facing a flare. Not always, but likely. That in and of itself is bad enough. But, then you need to wait for LDN to kick in.
And it is so damn slow. And, I think it needs your immune system to help it fight back. But, if like most of us... one has been taking immune suppressors... that is going to take a while. Even if not taking immune suppressors... your flora/fauna of the GI tract is the backbone of your immune system... so you got the typical 97 lb weakling tackling the big old monster sized IBD bully. Can you see why this would be a protracted uphill battle?

Pure conjecture. Predominantly urban legend... much more myth than fact. But I 'believe' this is what is happening...
 
I would like to celebrate my LDN experience with all of you that have been such help to me.

I started my LDN 2 nights ago. My NP put me on 4.5 right away for Crohn's and Hashimoto's. It is going to take some time for the Crohn's part to kick in but I woke up this morning with more energy than I have had in 15 years. No achy joints, no foggy brain, just endorphins giving me energy. I woke my husband up just to tell him about how great I feel.

Thank you all for sharing stories and helping me get my life back.

<3 Tonya <3
 
For those taking LDN for Crohn's. Is it normal to have stomach cramping ( I told hubby I have an alien in my stomach) on your first week of LDN? It is not piercing pain but it does hurt. And at 4:00 a.m. this morning I woke up with it in the middle of my stomach. Then 5 minutes later on the left side. Later near the bottom, etc.

Thank you for your thoughts :)
 
Hi all

I have a little problem I've been on LDN 4.5 mg now for over a month and I think it is making things a little better the only thing is I'm going to the toilet a lot at night for a pee is this normal just wanted to ask before I go to the doctors
 
TonyaS and Rye, I found that at higher doses LDN does the same to me. Like both of you, I jumped in at a higher dose, 3 mgs, and pretty quickly found I was having a bunch of side effects: nausea, lots of peeing/bladder irritation, hyperactivity, bad insomnia. I scaled back to 1.5 mgs and have stayed on that for a month. I'm getting good health results with none of the side effects. I just went up to 1.75 for the first time last night and so far so good. Dr. Bihari says that if you're having side effects from the LDN your dose is too high. I found this video of him talking about LDN really, really helpful.

https://www.youtube.com/watch?v=x54Jccr8GT8

Also, TonyaS, I also have Hashimoto's (had?) and found that I had to drastically and quickly lower my dose of thyroid. I started feeling exhausted and wired and had pain in all of my joints and muscles. When I decreased my thyroid I felt much, much better, so just be on the lookout for that. I'd been on either synthroid or nature-throid for 20 years and now I don't take anything!
 
Thank you Isabelle!

My NP took me off all of my thyroid meds when I was started on LDN. He will do blood work in 6 weeks to see where my TSH stands and go from there.

The only real side effects I am having is waking up to potty every night twice and some Crohn's stomach/things that I was told to expect after I started.

I feel wonderful but I get tired around mid day. Will take me time to get my stamina back, I guess.
 
Thanks
For the quick replies nice to know I'm not the only one I've also been having terrible vivid dreams and waking up in a sweat lol but I don't mind that
 
Hi all,

I'm new to this forum and I'm looking for some help. I just had a resection done about 2 weeks ago and my doc is already talking about putting me on preventative imuran and potentially humira. I absolutely will not take these drugs unless proven necessary, and in reality I would rather take something like LDN that doesn't seem to cause cancer in the long run (am I right)?

Is there anyone in Calgary Alberta Canada that has been prescribed LDN and if so how / by whom if you don't mind sharing?

Also does LDN seem to work for you? As compared to imuran? Any input is greatly greatly appreciated!

Thanks in advance!!!
 
Hi Everyone,

Wondering if anyone can offer any advice here?

I noticed today, that I have a very smooth area in the middle of my tongue - about an inch long and 1/4 inch wide. No taste buds - purely smooth but not reddened. I have read that lack of B12 can cause tongue issues but unsure as to whether my symptom fits that bill.

I have been to the Doctor and he is referring me to the cancer head and neck department for tests. He was not my normal doctor and I didn't mention Crohns to him, although he probably should have noticed from my notes.

Panicking a bit!

Has anyone in this site suffered any similar problems? Any help would be appreciated.

Sally
 
Thank you - it's not quite like that but on the right track I think. I found something called Median rhomboid glossitis and some pictures resemble what I have. I guess I will have to go the appointment, and explain what I think it could be and hope they agree. Not feeling quite as worried now, thank you. Sally
 
Hi Again Everyone,

I haven't posted in a while, but just want to report that I am still taking 4.5mg of LDN nightly(started June 2011) , and I continue to be free of any Crohn's symptoms. I would even go as far as to say that I don't believe I have the disease anymore.

The Internist I have been seeing has always been skeptical of LDN and would not give it to me when I requested it at the height of my Crohn's problems in 2011. My GI was similarly hesitant regarding LDN, but supported me in my visit to Dr. Jill Smith at Penn State who had done the successful clinical trials with LDN for Crohn's. Dr. Smith gave me the Rx for LDN, and I filled it at the same pharmacy in Lancaster, PA that provided the LDN for Dr. Smith's trials. As reported previously, the LDN worked well for me in a relatively quick timeframe, and I have remained symptom free and feeling well overall. During my last yearly exam with my Internist, the subject of my Crohn's was raised, and I reported to her that I did not have Crohn's anymore. As I stated, she is very skeptical regarding LDN and requested that I schedule a colonoscopy with my GI. I did as requested, and my GI came out to see me after the procedure to report that there is no evidence of Crohn's in my intestine. Other than signs of scare tissue from my colon resection in 2008 to remove a section diseased by Crohn's, my intestines were healthy. Boy, I wish I had known about LDN prior to my surgery! By the way, my GI now writes my renewal prescriptions for LDN.

So, LDN has worked great for me thus far (3 years). I continue to do research on the Internet regarding LDN and recently viewed a video of Dr. Bernard Bihari who is credited with discovering the benefits of LDN in the '80s. His description of how he believes the LDN works is amazing. It seems that he believes auto-immune and other diseases are caused by low endorphin levels in the body. The LDN simply works to boost the endorphin level which seems to help balance the body's immune system. It seems so logical to me. We regularly take supplements of other required body elements when there is a need to increase them to correct many illnesses we experience. I believe a low endorphin level in the body may be the cause of many diseases that are considered incurable by most standards.

Having this knowledge and belief, I plan to continue to take my LDN each evening for the rest of my life. There is no downside to taking LDN, and if Dr. Bihari's theories are correct, think of the increased health benefits we all could experience by having a balanced, functioning immune system.

Stay well,
Ernie
 
Thank you Ernie! Being a Crohn's patient that started LDN via a NP this is great news to hear. Maybe I can now convince my GI that it is worth another look. I am already doing better on it and it's only been 2 weeks!

Thank you again for that great post!
 
Tonya,

I'm glad to hear that you are starting to feel better. I believe it takes a while before the benefits of LDN are fully realized. Remember, your body has been damaged by the Crohn's, and you cannot expect that damage to go away immediately. Other Crohn's medications work to control and ease the disease symptoms. The LDN seems to work to help correct the underlining cause of the disease. In Dr. Smith's LDN trials at Penn State University Medical Center, not only did patients see a reduction of symptoms, but there was evidence of growth of new healthy tissue in their intestine. Healthy tissue permits better absorption of vitamins and minerals from your food that you were being denied by your Crohn's-diseased intestine. So a sufficient amount of time will be necessary to realize the full benefit of taking LDN.

In my case, I felt noticeably better in about a month. I had been on high doses of Prednisone since I could not take any of the normal Crohn's medications for one reason or another due to their side effects. They were initially tried, but affected my kidney function. Even the biologicals (Humira and Remicade) were off limits due to the fact that I already had Lymphoma. My doctors explained that additional surgery was no longer an option and that Prednisone was my only option to at least give me some relief from the Crohn's. However, relief came at a great cost since sustained use of Prednisone has many terrible side affects. When I started the LDN, I continued with tapering doses of Prednisone until I was finished with the prescribed course. So, my body needed to overcome all the negative affects of the Prednisone which included significant weight gain as well as extreme anemia that required me to have regular iron infusion sessions.

As time went on, I felt stronger and stronger and the Crohn's symptoms completely disappeared. Five month's after starting LDN, I was feeling absolutely great, but suffered a little set back when I had a gallbladder attack. I landed in the hospital for 5 days and eventually had surgery to remove my gallbladder. While in the hospital, I had a CT scan and an MRI which both indicated no evidence of inflammatory bowel disease. Further, the surgeon who removed my gallbladder reported that while doing the surgery, she took time to inspect my intestine and confirmed that she could find no evidence of Crohn's.

So my advice is to give the LDN a sufficient amount of time to help get your body back to functioning normally. I trust that you will have the same good result from taking LDN that I have experienced. Your decision to try LDN is a step in the right direction. I hope my story gives you confidence to stick with it.

Ernie
 
Thank you again Ernie. You are an inspiration to me and I am sorry you had to go through so much before you found LDN. Prednisone is a nasty medication that is both useful and destructive.

Thank you for sharing your story and may you continue to be in good health. I am not about to give up on my LDN.

Tonya
 
Hi.

Well, I think I am in remission - and all down to the LDN. I have has an MRI scan and now have to wait to see if my fistula has healed, and what is going on inside me.

Once in remission, would you advise changing your diet to get better nutrition and try foods that aren't low residue? I have tried a curry and a few bits of salad and don't seem to be having any problems, although I don't want to undo any good that has been done.

Also my BMs are normal and very thin - have been since instipped having diarrheah. Does that mean I have a narrowed bowel, and is that likely to improve as time goes by when taking LDN?

Sorry, probably too many questions, but hoping there is someone who can give me some answers.

All the best,

Sally
 
Congrats on remission! I can eat all sort of foods in remission that I couldn't before. The key is to start adding things in slowly, a small amount at a time. If fresh fruit has been a trigger, you might try making a smoothie with a half cup of fruit - blenderizing helps digestion. I had the narrow stools as well for a long time but it gradually it became more normal. I suspect it has to do with building bowel muscle tone as BMs go from liquid to solid, but I don't have any evidence for that.
 
Hi All!
My daughter has been on LDN now since January 2012. According to all her testing she was in complete remission. Two weeks ago she started having blood in her stools again. She had a fecal lactoferrin done they said it was over 100. Have any of you experienced a sudden flare up while on LDN? She has had some mild resurgeonce of symptoms in the past but those have usually resolved quickly. This is her first real flare up. If this has happened to anyone else I am wondering what your doctor did to help quiet things down again. We are talking about Flagyl and maybe a short course of entocort or prednisone.
 
After successfully handling my disease for years... I had a terrible flare. In the time leading up to it, I had an ongoing battle with a terrible flu, plus just an unimaginable time in my life of stress. My son and I had a major falling out, my girlfriend and I split. It was an amicable split.. we are still great friends.. but it was rough emotionally at the time. On top of that... the company I worked for was sold. We were told that we would keep our jobs... but it was just another added stress at the time. On top of that, I was getting my LDN from a new source... and I'm not sure if the quality/strength of the LDN compound was 100%. Anyway, long story short... my disease reared it's ugly head literally overnight. It manifested itself, and spread/raged like wildfire... and I lost my remission.

Despite all it's great qualities, there is a problem with LDN. It is very slow acting. There was no way my flare would respond in time to a slow treatment. So, I had to go on to a high dose regimen of pred. And, since you can't take LDN while on more than 10 mg of pred... I've been off of it since May. As an alternative, I've started on Remicade while tapering off the pred. My flare has been curtained, but the damage done is pretty bad.

I can't pinpoint why my disease flared. Heaven knows there were plenty of potential reasons for it... but the 'why' is not that important at the moment. If it could happen to me... it could happen to anyone. Maybe after all these years, the disease just found a way... or my circumstances gave it an opportunity. I had stopped following a good diet, I'd quit smoking... I'd discontinued the high dose of 5-ASA I was taking in conjunction with the LDN (due to side effects from the 5-ASA.. 4G daily for over 7 years adds up).. Or maybe the LDN built up inside me... and lost its effectiveness. I really can't say which of these scenarios is the culprit. All I can say is... like any other good drug, it isn't failsafe.

As for me... I'm still on Remicade (a scary drug, but I have no other option), plus pred (a hate full drug that is making my life a living hell)... and if things don't improve greatly in the next little while... my last option will be surgery (something I'm hoping to avoid).

My advice? Do whatever is necessary to stop the flare, and once stopped, reconsider your options.
 
Hi Kev,

I am so sorry that you have been going through these issues and the LDN is no longer keeping your Crohns at bay.

It was your success with LDN which gave me the confidence to push my gastroenterologist to prescribe LDN for me. You were my light at the end of the tunnel.

Thinking of you and hoping that it won't be too long before you can try the LDN once more.

So far I am OK but a stressful time for me in my relationship, so hope that doesn't precipitate a flare.

Take care.

Sally
 
I just noticed this LDN support group but see that it is not very active.
I began LDN quite a few years ago and have continued ever since with 4.5 daily with compounded pills. It never cured my Crohn's/Colitis but seems to have kept things from getting out of hand...no hospitalizations, no fissures, etc.
and for someone in their mid 70's, weighing only 95#, my general health remains
ok. The gastro dr. would not prescribe LDN, but my GP does. At this time,
I am taking the LDN and 2 1/2 mg. prednisone daily. I tried Remicade but
had to quit because of reactions during infusions. I also tried Cimzia, but
that did nothing to help. Any one else taking LDN, and what do you have
to say about it?
 
Jackie,
My daughter is only on LDN for her Crohn's and has done very well except the last few weeks but we are trying to get her back into remission.
 
I've been on LDN for 2 months and it has been fantastic! I also was put on the gluten/soy/sugar free diet at the same time. I have really been doing well. I was in the bathroom 35 - 45 times per day and now it is more like 4 or 5 times.

I feel that I have my life back :)
 
LDN is very interesting. It costs very little and that makes drug companies
disinterested in clinical studies. The few clinical trials which were done found it to be useful. Humira costs thousands of dollars, but I am always surprised to see how many other drugs are commonly taken along with Humira, Remicade, or other biologics. I can't help but wonder if they ever work just by themselves.

It was great to see that TonyaS and Kimmidwife have had experience with LDN and hope
it continues to help.
 
Biologics are quite capable of handling IBD on their own, many people here simply have cases so severe they require dual therapy
 
My 13-year old daughter was diagnosed with Crohn's fall of 2013. She is also food allergic and celiac. The GI first put her on prednisone, which caused her to have stomach aches, loss of appetite, and depression- the very things we were trying to fix. So, we stopped prednisone and followed the elimination diet by John Hunter. We were able to get all her gut symptoms to resolve by following a very strict diet. And she started growing and gaining weight. Her labs became normal, except for fecal calprotectin. It was slowing decreasing over 6 months as she stayed on her diet. Then, we started ldn and within 3 months, all her labs were normal. Her calprotectin went down 500 points. It took about a month on the ldn for her to really start feeling better every day. At that point, she was able to start expanding her diet. And now her diet is larger than it's ever been. And she feels better than she's felt in years with no gut trouble at all.

I was also diagnosed with Crohn's spring of 2014. I initially tried aprisa and uceris. These maybe helped to get things under control. But, when I saw my daughter's great response to ldn, I stopped those meds and am now trying ldn. I've been on it for 2 months and feel almost well. I also have ankylosing spondylitis which the ldn has helped tremendously. So, I guess that you could say that I'm a firm believer in ldn.
 
Hi everyone!
I have a quick question. I have heard that if you have any type of yeast infection in your body that it can totally interfere with LDN. We realized my daughter has a bad case of thrush in her mouth. I am wondering if this is what's causing her flare up?
Has anyone heard of this? Also has anyone heard ofa cure for thrush called Lufeneron? I think that is the spelling buti might be mixing it up.
 
I had thrush and a yeast problem throughout my body when I started LDN. I was put on Fluconazole (Diflucan) for my first two months on LDN.
 

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