Starting LDN!

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

J

JDTM

OMG LDN BBQ
Joined
Feb 18, 2012
Messages
446
Hi folks! Haven't been posting a lot lately, but I've been lurking on the forum and checking up on various research articles and treatment threads here and there. That said, I think this warrants a new post! Tonight, I'm starting LDN. I'm hoping it'll do right by me, and I plan on posting about my experiences with it here.

I'm actually sorta excited to try it out... it's still pretty early on in the evening here, and I kinda wish it was closer to bedtime! That said, I'm hoping that I manage to sleep tonight!

Wish me luck folks! :D
 
I just started LDN about 3 days ago as well. Can't wait to see if it will work! Although, did have my first negative experience with the "vivid dreams" side effect, but if all I have to worry about are bad dreams every now and then, I'll take it!
 
Best of luck to you both.

I look forward to hearing about your experience. I always liked the dreams, but they went away pretty quickly.

Dan
 
Very cool! Hopefully they'll be cool dreams and not ultra-vivid nightmares, if anything. We'll see.

If anyone out there has any pointers/suggestions/recommendations, feel free to chime in. I'm sure I'll have questions in the coming days.
 
Well, it wasn't necessarily a BAD dream. Just weird and exhausting. When I finally managed to wake myself up, I felt like I had aged 20 years in two hours. Of course, dreaming about not being able to find your daughter tend to be exhausting (as do daughters)! lol :)
 
Jesse! Dude! I'm really excited for you :) I pray LDN is everything you hope it is, and more. You're an amazing person and deserve nothing but the best. Thank you for keeping us updated. I look forward to your future posts in this thread.

I know your Crohn's has been, "mild" symptom wise in the past. What, if any, symptoms have you been experiencing?
 
Very exciting for you both, all I can say is from Jack's experience is the first week was grand 2-3 week, not so much but we kept going and we have had such fabulous results we are 1/2 through the 6th month and he has not felt this well since before he was dx'd (his words) It is nice to see him acting like a 13 year old boy - well most of the time. I'll still take it over the pale, lethargic child he has been the last couple of years.
Very nearly gave up in that 3rd week but just as I was getting ready to call the GI he turned the corner and has been good ever since. In fact this is the first year he has not missed any school due to his gut. Hurry somebody give me a piece of wood to knock on.... We only have a few weeks left of 1st semester so keeping my fingers crossed.
He has also not felt all the joint pain that has been a big problem the last couple of years.
Hope it works as well for you as it has so far for him and please keep us updated on your progress
 
Thanks everyone!

Glad to hear it's working so well for Jack!

David, I'm kind of in a good place to start. Symptoms have gone WAY down since I was first diagnosed, but I still have the occasional pains in my gut, both above and below the belt. Nothing absolutely crippling, but enough to notice and to remind me that I have Crohn's (not that the 8 Pentasa a day isn't enough of a reminder). I would call this remission in that I can function normally and live my life, but after reading what I've read on here, I'd like something that can potentially help me further, and I'm not super comfortable with only being on Pentasa, despite the fact that I feel like it is helping me to a certain extent.

Side-note: vivid, crazy dreams. Not cool. Some of it was alright, sure, but some of it crossed into nightmare territory. Yeesh.
 
New to forum, but wanted to post that LDN has worked extremely well for college son with Ulcerative colitis for over a year now. It did take time to "kick in" (average time is 3-6 months). He takes no other pharmaceutical drugs, has altered his diet and takes probiotics and boswellia. He likes feeling "normal" again.

This doesnt mean you won't have a bad day. He will have occasional days that are "mini flares" from stress (like finals week this week) but still very managable.

Note- you can start as low as 1.0 mg and work your way up to 4.5 mg. Recent studies from Dr Jill Smith indicate 3.0 mg might be all you need. Some people's metabolism is slower than others so they take it every other day, so don't be afraid to adjust how you take it to your specific body. If you have absorption issues try transdermal cream. Ask the pharmacy to compound it with emu oil, as it is non-allergenic and absorbs quickly into the bloodstream.

If you are in the UK this is a great website - ldnnow.co.uk
 
Night two -- don't think I slept super well, but I also don't remember any crazy dreams, so that's good. I realize that this takes a while to "kick in" for many, so I probably won't have too much to report for a while. Still, I'll keep you all posted if I notice any significant positive or negative changes.
 
Yep, just went ahead and started with that. I'm a big boy (about 200 pounds), so I wasn't too worried about the dose being too high. I've fortunately managed to maintain the same weight since I got down to 200, which is fine with me. (Previously, I was about 250 -- and even though I'm feeling better, the weight hasn't really come back, which is great. That's the funny thing about Crohn's and weight loss when you're overweight to begin with, when someone hears you have IBD: "Oh man, that's terrible... But, y'know, you LOOK great." Uhh, thanks, I think? ;))
 
JDTM - my son was the same as you. Needed to lose some weight (he lost 60 pounds) and hovers between 190-200 now. He got the same comments. This wasnt exactly the way he wanted to lose the weight though :eek2:
 
Karen -- sounds like your son is EXACTLY like me. I was around 200 lbs. as a freshman in college, and as the years have gone by, my weight fluctuated (well, went up, mostly) quite a bit. I knew that I wanted to lose weight and whittle myself back down to around 210 or so... and while I'm glad to be back to a "healthy" weight, IBD was certainly NOT what I had in mind.

Kev -- just took my third pill. Here's hoping that any more dreams (if they continue) are good ones! Job/life stuff has got me pretty stressed as of late, so I'm guessing my brain was just acting out the other night. Weird.
 
Howdy folks! Nothing really new to report here, but that's somewhat expected -- I was doing OK in the first place, and I know that LDN doesn't work instantly for most people. Still curious about whether or not I'll notice a tangible difference over time. The dreams seem to have mellowed a bit, which is fine. I've felt a little off over the weekend, but that's my own fault... as I continue to feel better and feel free to eat and drink certain things without immediate repercussions, it's easy to slip back into old habits... I've made a habit of overindulging during the past few weeks, so I need to try to nip that in the bud before the holiday is here. Or at least slow it down a little.

I did have some homemade kale soup with a veggie-based broth, so at least I'm getting in some veggies. ;)

Not sure how alcohol interacts with LDN (not that I should be drinking alcohol anyways); if anyone has any input on that, feel free to chime in.

More updates later!
 
I've read where people on LDN that consume alcohol projectile vomit and I've also read that some have no problems at all. You'll have to be your own test monkey!
 
I usually don't drink more than 4-6 beers, but I still take the LDN a couple hours after stopping without problems. I take it with a lot of water. However, I still think this may tax the liver--but I haven't read anything concrete on the matter. So I take silymarin the following morning with a bunch of water.

If I drink anymore than that, or delve into liquor, I usually forgo the LDN for one night. Full dose naltrexone can cause liver problems, so I like to be pre-cautious. Honestly, I haven't looked into it enough to know for sure.
 
Thanks for posting JDTM. Although my son is not of the age to drink (and better not be now) we do like to keep him informed of the issues that could arise from other drugs and alcohol due to his meds and the Crohn's and that he needs to make informed decisions
 
Hi! Just wanted to check in and see how the LDN is working so far for you all?

I was scared to get my hopes up so soon, but it appears the LDN is actually working quite well for me already. It's amazing, really. I think I'm about three weeks in, and I've only been having 2-3 mostly formed BM's per day, sometimes less! I still have to be careful of what I eat, but at least I can eat things other than crackers and bread most days. I haven't been this close to "normal" in years.

Down to 15 mg of prednisone a day, and normally I would be hospitalized by now at that low of a dosage.

Keeping my fingers and toes crossed that it keeps working for me, this is my last hope seeing as I've hit a brick wall with the insurance refusing to cover the stem cell transplant.

Hope all is well and happy holidays!
 
Hey there Avw!

Thus far things have been working out well for me, but I'm still less than two weeks in, and I was doing pretty OK to begin with. I would like to say that I'm doing better, but I'm not sure if that's just because I was in a good place to start with, and I don't want to jinx it. I could be imagining things.

I hope that if (when?) I do flare again, budesonide will help take care of it; I'm glad to hear that you are doing well on a lower dose of prednisone, and I'm also happy to hear that LDN and corticosteroids can coexist if needs be. I hope that LDN helps you taper off of prednisone, and that you continue to feel awesome through the holidays and beyond! Here's to an amazing 2013!
 
One month in! I'm feeling pretty OK for the most part -- yesterday was a bit rough, but that's my own fault (friend's birthday celebration = a bit too much booze). Strange dreams have largely subsided, and there are no other side effect issues to be reported.

I'm still a little unclear on the optimum time to take my pill; most nights, between 9-11 is pretty normal, as I just pop it before I go to bed. However, on the occasional night that I'm out late (hanging out with friends, playing a gig, etc.), I haven't stuck to that strict of a time schedule, and I'll still take it when I get home before I go to bed, even if it's after 2:00AM or so. Not sure if that has any effect on anything.
 
Alright... here's where I'm hoping that this is just a little bump in the road, or the "when-you-take-LDN-it-sometimes-gets-worse-before-it-gets-better" phenomenon that I've read about on here. Kinda had a rough start to my day and even had to duck out of a training session at work for a few minutes because of cramping and urgency. Mercifully, that was the last of the issues for the day, but I couldn't quite figure it out; I wasn't particularly awful in terms of diet the day before, so I don't know what gives. My tummy is a little tender at the moment as well. Hopefully it's just a fluke. In any case, I bought a couple 4-packs of Orgain so I can nurse those if I still feel off-kilter tomorrow.

In other news, I just remembered that I'm only about a month away from my one-year anniversary of being diagnosed with Crohn's!

WORST. ANNIVERSARY. EVER. Amirite, you guys? ;)
 
Thank you for starting this thread and for being honest and real :) I am planning to follow your progress. I have given E's doctor the LDN studies and I am very hopeful to try it. We will see.

Hang in there ~ I have also heard that it sometimes gets worse before it gets better.
 
JDTM said:
Very cool! Hopefully they'll be cool dreams and not ultra-vivid nightmares, if anything. We'll see.

If anyone out there has any pointers/suggestions/recommendations, feel free to chime in. I'm sure I'll have questions in the coming days.
Click to expand...

I take LDN along with LDA Immunotherapy from Dr Shrader. My experience has been fantastic.

I go off of my LDN on the day that I take my LDA Immunotherapy shot.

My sleep is often interrupted when I re-start the LDN. I have learned that when I re-start LDN, I take it at 3 in the afternoon, and the next day at 6 pm and the next day I finally take it at bedtime.

This works well for me and keeps the LDN from interrupting my sleep.
 
Charleigh said:
Thank you for starting this thread and for being honest and real :) I am planning to follow your progress. I have given E's doctor the LDN studies and I am very hopeful to try it. We will see.

Hang in there ~ I have also heard that it sometimes gets worse before it gets better.
Click to expand...

Anyone can email Crystal Nason who keeps a database of doctors nationwide who use LDN. She will point you to an LDN doctor close to you. [email protected]
 
Wow, so I just checked and I'm seven weeks in on LDN. Feeling pretty OK thus far... my tummy hurts a bit at the moment, but overall I seem to be doing pretty well! I'm hesitant to say I've seen a super big improvement, but if you put a gun to my head, I'll admit that my days have been getting better if only slightly. (Again, I was in a pretty good spot to start out with.) I'm hoping that by the end of the next 5 weeks or so I'll be feeling pretty awesome; I'll be headed to my GI around that time as well and I'll let her know about my progress.

For those of you trying LDN, if you have a few "off days," try not to worry too much. I definitely have had a couple of days that didn't feel quite right, but I bounced back to "normal" (whatever that is), and usually without significant changes to my diet or supplements.
 
As an aside, my band played a great show this past Friday night -- we had a great time and I didn't even THINK about my Crohn's one bit! By that metric, I'd say LDN is working pretty well. :D
 
Yeah, not sure if she'll order a retesting of levels and whatnot, but she didn't last time, so I'm hoping I'll get a blood test and some good results!
 
hi
may i ask-- those of you who have had success with LDN, where was everyone in terms of CRP when they started the LDN. I am wondering if one has to be in a state of low inflammation for it to work.

And for those who said they had a flare a few (3-4) weeks in- how long did it last and how bad was it?
thanks for sharing- we all learn from you!
 
Hey there healthy -- I can't speak for anyone else, but I will say that my CRP was probably pretty low, although I can't remember the exact number offhand. Lower than when I was first diagnosed, that's for sure. I also didn't "flare," per se, during the third/fourth weeks, but I had a couple of off days. I'm on week 8 or so... I'm certainly not done with the typical "give-it-three-months" timeframe, but so far, so good.

I will say that if you check out some of the studies at the top of this subforum (I think they've been stickied), you might find out more info regarding CRP levels and people who were flaring when they started LDN in the published articles. I heartily encourage others to chime in here as well with their own personal experiences.
 
I think that because it takes a while to kick in, you'd want to have any inflammation under control as much as possible before starting. I'm not sure what my CRP was prior to starting but it was probably within normal ranges. I was generally feeling fine when I started LDN.

I didn't have a flare 3 to 4 weeks in but the mega amount of energy I was experiencing from the LDN seemed to fade around the 4 week mark.
 
Alright folks! Sounds like I'm doing alright -- went to my GI yesterday, and things are looking good! LDN seems to be working for me (although I was pretty OK to start with), and I'm staying on the Pentasa for now. Might try cutting down on the omeprazole. Anyways, I got some of my test results back, and although I'm still waiting on my vitamin D results, my CRP is OK (2.44, which is down just a smidge from 2.70 in August 2012). After all the talk on the forums about magnesium levels, I asked for that to be tested as well, and it looks like I am within the normal range there as well (1.7) -- if anyone knows more about magnesium levels and wants to weigh in (*cough* David *cough*), that would be cool.

Will post again when I hear back about my vitamin D levels.

Also, I am apparently about to run out of LDN and I still need to get a refill mailed out to me. Has anyone gone a few nights without LDN, and if so, to what effect?
 
I did a little experiment and went off LDN for a week. I was more tired in the afternoons. That was about it. I know we're all different but it didn't make much difference for me.
 
Jack has missed a few nights over the weekend to no ill effects. Glad you are moving in the right direction, hope it keeps on improving.
 
Has it been a slow improvement over time beyond the 3-month mark for Jack? (Bumps in the road aside, of course.)
 
Yes, exceedingly! We just finished 8th month the LDN seems to have done it's job at least scopes a month ago showed no active disease signs and labs were good, but as you know we were still having that growth/weight gain issue but after a month on supplemental formula he has gained 13lbs, the tux in the avatar picture, had to put it on last night for a choir performance - doesn't fit him, can't lift his arms.
So I'm thinking the LDN is working great and after so many years of associating food with pain, he just never really ate only ate small meals. So when he was feeling well, he still stuck to the old way of eating otherwise would we have seen such a huge weight gain by adding the supplements - I don't know but I've built my bubble and I'm staying it.
We are certainly seeing some mood swings, it is almost like he is on prednisone but I have a feeling it is just a lot of teenage hormones working overtime to catch up.
He was complaining about leg pains the last couple of nights, was a little worried as joint pains and flares have always gone hand in hand but they seem to be more along his shins. Growing pains? Hope so.
I guess after all this rambling I think he is doing great on LDN and we are seeing the full effect and it is allowing him to be a 13 (nearly 14 in just a few months) year old boy with all the teenage angst that entails.
 
Could be his age and hormonal changes... which is its own set of challenges. ;) Glad to hear it's working so well!!
 
^^^ Yeah, that is what we are hoping. Who but crazy Crohnie mothers hope for teenage drama. :) One of his teachers just made that comment to me that he must be feeling better as she had to ask him to settle down and she hasn't done that all year.
 
A while back I was reading on a mens forum about LDN and some there said that after a month of LDN it raised their testosterone levels. I haven't been able to find any official papers on this but it makes sense. Probably why I had shoot off into space energy the first month I was on it.

With Jack's teen hormones and the LDN, I bet he's about to start growing like a weed!
 
I guess that's why I've been trying to get all of my coworkers to have arm-wrestling contests with me lately.

AM I RIGHT, BROS?! YEAHHHHHH!!! WOOOOOOOO!!!

;)
 
Aaaaaaaaannnnd... my vitamin D levels have dropped. I'm at 34 -- I was at 50+ when last checked during the summer. I guess it's time to stop being so lax about taking my vitamins daily. (FWIW, I am religious about taking my meds... just tend to run late getting out the door in the morning and I don't always take my vitamins.) Anyways, the doctor's note says that she recommends that I keep taking daily vitamin D supplements at the same dose, so hopefully that will bring it back up if I stick to it!
 
2000IU, in the morning. It seemed to work the last time, when I was really sticking to it. Also, it was summer, so I made somewhat of a point to get some sun. But yeah, when I was first tested I was at something like 17, so the supplements definitely helped!
 
By the powers vested in me by this paper which details how the current reference range for magnesium is a load of crap, I pronounce you likely to be deficient.

Multiply mEq/L by .5 to get mmol/l of magnesium.

In patients with Mg serum values lower than 0.9 mmol/l Mg, magnesium supplementation is recommended; for patients with values lower than 0.8 mmol/l, starting Mg supplementation is necessary. We recommend that a mMg serum value of 0.9 mmol/l Mg be considered as the lower reference limit, in evaluating symptoms or diseases suspected as being associated with Mg deficiency. In this case, Mg has to be used as a first choice therapy. When symptoms of the MDS are found, patients with serum values of less than 0.8 mmol/l Mg, or better 0.9 mmol/l Mg, ought not be erroneously declared normomagnesemic.
Click to expand...
 
Cool -- well, at least it's good to know that my desire to cut down on omeprazole isn't off base! My GI was good enough to re-write the prescription so it says "20mg twice per day," instead of "40mg daily" -- that way, I'll be getting smaller pills in an effort to try cutting down on it and seeing if I still have heartburn issues.
 
Update: It's been a few days since I've lowered my dose of omeprazole -- down to 20mg from 40mg. No perceived difference as of yet, and I've had some fairly acidic/spicy foods in the past couple of days. I wonder if the LDN is helping to keep my duodenal problems at bay...
 
That is great Jesse, Jack has been completely off Omeprozole for several months and no problems, last endoscopy showed no active disease I absolutely think it is because of the LDN, only downside is he can now drink soda so I have to be the mean mom and cut down on it and tell him no he cant have soda with dinner :D
 
scottchopchop said:
I take LDN along with LDA Immunotherapy from Dr Shrader. My experience has been fantastic.

I go off of my LDN on the day that I take my LDA Immunotherapy shot.

My sleep is often interrupted when I re-start the LDN. I have learned that when I re-start LDN, I take it at 3 in the afternoon, and the next day at 6 pm and the next day I finally take it at bedtime.

This works well for me and keeps the LDN from interrupting my sleep.
Click to expand...



Thanks for this info! M y son is starting LDN when we get it in the mail from Ohio. Ordered by our doc. tonight, and my son has an appointment with an LDA doc next week. (our first) So this is very helpful information for us. He already has difficulties with nights and days. so this is my main concern for LDN as well as starting LDA so close to beginning it. would like to hear more of your story and what you thin of both treatments. thanks.
 
Re heart burn and reflux:
I think I have seen it discussed here, but I have been warned my my alternative doc that the perscription gerd meds decrease stomach acid and make your gut work harder to digest. they actually can contribute to GI issues according to him. Drinking a few sips of apple cider vinegar or water with lemon in it is supposed to be the best thing for acid reflux.
I tried Brags apple cider vinegar for this, was afraid it would taste awful but it was really quite nice, i ended up drinking the whole bottle. I am no doc but if you want to cut back on meds this one might be one to look into. Sometimes meds end up chasing each others side effects, and some docs are really unhappy with string of results of using gerd meds.
maybe somthing you already know. but there it is.
 
Hi Zab...just wondering if you're drinking that Apple cider vinegar straight. Best way to take it is about a tablespoon or two of it mixed in about 4 - 6 oz of water and a bit of raw honey to take away the bit of the vinegar. When you mix it this way it's actually not bad at all. Just not good to drink it straight cuz it will do a number on your tooth enamel eventually from what I've read.
 

Similar threads

A
31 yrs on.....
Replies
0
Views
655
aryex
A
C
Your thoughts, please. 10 yr old.
Replies
19
Views
2K
Crohns dad
C
K
Possible Crohn’s disease
Replies
10
Views
2K
musicalwiz
M
Papantoine
Neglect?
Replies
2
Views
579
Bufford
Bufford
Rebecca85
Guess I’m back after 10 years
Replies
3
Views
256
Entchen
Entchen

Latest posts

Back
Top