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01-23-2012, 03:00 PM   #1
Pita
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Join Date: Dec 2011
Starting LDN soon!

Hi everyone, I've been reading people's posts on LDN for quite a while and finally worked up the courage to ask my doctor for LDN. He read the studies, quickly called me back and said he would have no problem with it and wrote a prescription for a 3 month trial!

I'm new here so I'll give a bit of an intro: I was diagnosed about 2 and 1/2 years ago. Initially I went onto Asacol, Entocort, and Imuran. I was a bit better but once the Entocort stopped working I got worse and worse until I was faced with either Pred or enteral nutrition. I decided to do EN after a lot of pressure from my parents and doctor and it actually went quite horribly. I couldn't do the tube so ended up having to drink Ensure all the time. A while after this, I found a naturopathic doctor who helped me immensely - he does what you would call "massage" for your stomach and gave me many naturopathic treatments. This, along with a strict diet, kept me feeling very good for about a year and I stopped taking the other medications.

However, I started university this year which changed my diet and increased my stress level and lately my stomach has been up/down. I really don't want to go back on Imuran / Asacol as they just made me worse and worse. I've never had the same "bowel" issues as most other people on this forum which made it hard to diagnose Crohn's for me. My symptoms are mainly just pain/cramping, fatigue, sometimes nausea, and a lot of skin issues.

Anyways I should be getting LDN within a week and I will keep updating! I'm currently doing ok, going to class and everything but often feel unwell at night / when I don't sleep enough. How fast did all of you on LDN start to notice a difference?
01-23-2012, 06:02 PM   #2
Crohn's 35
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Join Date: Oct 2009
Pita! Yes there has been a few on here, one Canadian that I know of Kev is doing amazinf on it coming up to 4 years give or take. Another one Dan Bergy, he has been on it too. I inquired on it once but my Gi knew nothing of it and he is about to retire. Let us know how you get on!
01-23-2012, 07:51 PM   #3
LittleChloe
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Hi Pita, My 15 year old daughter takes LDN. I kept track of her progress and I believe it took about a month to see a big change. Others have seen results even quicker. I hope it works well for you. The side effects are minimal and they do go away so be patient. I would recommend also keeping a diary. Sometimes you don't realize how much better you have gotten until you look back at your previous entries. Best to you!
01-23-2012, 09:26 PM   #4
mnsun
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Join Date: Nov 2011
I've been taking LDN for 7 weeks, at full dosage (4.5mg). I would say 6 weeks in I noticed less of a dependance on taking Probios. So far, I notice my stools are formed and I've only been taking probios once a day, as opposed to relying on 2-3 caps a day.

I feel more confident regardless of the foods I eat; this doesn't mean I'm eating particularly unhealthy, but I can tolerate iceberg lettuce much better, for example. I've actually started introducing coffee on the weekends, over the past 3 weeks. Just the other day I had two cups of coffee in a sitting, with no ill effects. These were freshly ground beans, of course. I usually stick with yerba mate, and still do for the rest of the week--I'm not pushing my luck.

So, if I factor in the introductory phases of 1.5mg (one week) and 3mg dosing (another week), I felt a difference 8 weeks in.

That's not always the case, you know. Some people say they don't notice a difference for nearly 3 months, others toggle their doses to maybe 1.5mg in the morning and 4.5mg at night; I've even heard of people ratcheting it up all the way to 9mg a day! And you'll also hear of people who only need 3mg, lest they feel wired--these people might benefit from taking it in the morning. I MUST EMPHASIZE these latter instances are the exception. Surf around, I think most people feel a difference in 1-2 months.
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"Give away the stone. Let the oceans take and transmutate this cold and fated anchor. Give away the stone. Let the waters kiss and transmutate these leaden grudges into to gold. Let go." MJK
01-24-2012, 06:44 AM   #5
SnowDay
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Location: Ireland
Hi Pita. I wish you all the luck on the planet, and i'm really interested to hear about your progress since I suffer from the exact same issues as you describe in the OP. I am going to discuss LDN with a GI in a months time, and since i know my eczema is an autoimmune condition, based on what the research i've done on it, I am holding out high hopes for LDN having a positive effect.

I also think it's great that your doc is so on board with it. I have talked to an immunologist (well i just left a message with his secretary asking him to call me to talk about LDN, and he just got his secretary to call me back to say he'd never heard of it and to never use a drug that can be bought online. Some people are soooo helpful )

Anyway, please keep us updated. Thanks and good luck.

-Jude.
__________________
Dx'd w Leaky Gut Syndrome in 08. Had eczema(autoimmune), chronic fatigue, asthma and suspected crohns(booked for an endoscopy).

Been on cyclosporine, currently on vit d3, zinc, probiotic, digestive enzymes, getting iv drips of vit C, B complex, folic acid, niacin and EDTA twice weekly and living on an all poultry diet. WANT CARBS
01-24-2012, 08:14 PM   #6
Pita
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Join Date: Dec 2011
Thanks everyone, I should be getting it in the next few days and I'll make sure to update! Hopefully it works and works quickly, although I know I should be patient. Not really feeling too bad, just not good and its hard with university life and everything.
01-27-2012, 11:54 AM   #7
Pita
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Join Date: Dec 2011
Got it today & will be taking the first dose tonight! I'll update probably in a few days but from what I've read its unlikely there would be any dramatic results as most people found it takes longer. Anyways, I'll try to update every so often on how its going - I know I personally benefited a lot from reading others' experiences with LDN so I'd like to contribute!
01-27-2012, 05:59 PM   #8
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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Hey Pita

Congrats, and good luck. Here's hoping it does for you what it did for me. Keep in mind I included diet, rest and supplements with my LDN regime. Give that little pill every bit of help that you can to do its job.

Kev
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
01-28-2012, 09:21 AM   #9
Pita
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Join Date: Dec 2011
Thanks Kev! May I ask what supplements you took / are taking? I'm currently taking Vit D, B, Turmeric, and Probiotics although I'm never quite sure what brand of probiotics to get. I've also been trying to follow a no gluten, yeast, or sugar diet but I'm afraid I tend to cheat on it.
Also - took dose last night at around midnight, slept fine and feel normal today.
01-29-2012, 12:39 PM   #10
Kev
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Hey, no problem...

First thing I should mention is that I try (not 100% successfull all the time) to follow a low fibre, low fat, low residue, lactose free, hi protein diet. To that I add a generic 50+ multi vitamin (I initially went with the big brand name, but I found out they use lactose as a filler, the generic doesn't.. go figure). I also take 3 wild salmon fish oil capsules a day (it's a compromise.. I'd prefer Krill oil, but I'm allergic to shellfish). And, I also eat 1 - 2 servings of probiotics each day, based on the theory that I want to supplement or re-plenish my healthy biotics at every opportunity. As for type, I read a study that was linked to on here many moons ago that seemed to indicate that taking 1 culture biotic was substantially better than taking those that combine multiple types of cultures. Why? I dunno. Perhaps the various types of good cultures only ended up competing with each other. There may have been studies since then that confirm or refute that, but it worked for me (or at least did no apparent harm), it was simple, so I stick with it.
Other than that, I continue taking 4 G of Salofalk (5-ASA) a day, and my 4.5 mg LDN at nite. I avoid/limit my alcohol consumption, listen to my body, rest when I should, exercise (my work demands some extensive physical activity), and try to avoid stressors.

That's my secret formula, or recipe for success if you will. It gives me a 'liveable' life.
01-31-2012, 10:20 PM   #11
David
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Location: Naples, Florida
Best of luck Pita! I'm subscribing to your thread and look forward to updates.
02-01-2012, 08:16 AM   #12
Pita
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Join Date: Dec 2011
Thanks everyone! So I've been taking LDN for only 5 days now, still feeling the same but that's to be expected. I just wanted to update and say I'm fine, and I haven't experienced any side effects yet - been sleeping great! I felt good yesterday although usually I fluctuate up and down a lot so I really can't attribute that to the LDN. Guess I'll just have to wait and see. I want to thank you all for the support though, it means a lot to me!
02-13-2012, 11:25 AM   #13
Pita
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Join Date: Dec 2011
Hi everyone, so I've been on LDN for about 2 1/2 weeks and I'm feeling really good so far. The past week or so I've had very minimal pain / fatigue and although it's too early to tell if it's due to LDN or not, I just wanted to give an update. Also: I haven't experienced any difficulty sleeping or nausea, so I'll definitely continue taking it as I have a 3 month prescription and then a doctor's appointment.
02-13-2012, 10:29 PM   #14
kimmidwife
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Good to hear you are doing so well. My daughter just reached the one month mark on LDN and was doing great until today. We all got mild food poising so I am hoping that is all it is and she will get it over it quickly and it won't interfere with her treatment.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-14-2012, 04:30 PM   #15
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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Well, its been my experience on LDN that, although it works wonders... anything that has the power to knock the stuffing out of a healthy person (i.e. severe cold, really bad flu, etc..) can create a temporary setback/mild mini flare. And keep in mind it (LDN) is an immune suppressor (reportedly). I work long hours, 5 days a week, out in all weather, etc., and HAVE had some nasty bouts with cold/flu. I'd lose a little ground, but when the 'bug' had passed; things rapidly got back to normal. I've been road testing LDN for 4+ yrs now, and it has really stood the test of time. Just my opinion, OK?
02-14-2012, 05:54 PM   #16
kimmidwife
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Kev,
I thought LDN did not affect the immune system from everything I read? I think people with any chronic illness though are more susceptible to getting sick then the general public.
02-16-2012, 07:40 PM   #17
Kev
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Join Date: Jun 2006
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well, that was what I thought too, back in the beginning. But since then, I've seen posts from folks who seem fairly confident that it does, indeed, work as an immune suppressor. I believe one source (can't name names, recall who said it or what thread it was in) stated they'd been in communique with Dr Smith regarding combining LDN with other suppressors and that it wasn't a conflict. That's part of the problem with the www... things posted on it take on a life and validity of their own; and getting to the hard, incorruptible kernal of truth at their core is often a challenge. I was part of that problem... I didn't know (and still don't with any certainty) the 'mechanics' of how LDN is able to stop crohns. Separating the hard science from the anedotal folklore isn't easy.
I just know it works... and it isn't voodoo, or snakeoil. Just a different use of an old med.
03-28-2012, 06:55 PM   #18
Pita
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Join Date: Dec 2011
Hello everyone! Sorry for not updating more regularly, it's been quite busy. So I've been fairly stable, still have some symptoms but usually very mild and only when I'm stressed or haven't gotten enough sleep. Not sure if this is due to the LDN or not but I'm continuing on taking it as it doesn't seem to be hurting. I sleep very well and haven't gotten any strange headaches or nausea. It's hard to tell whether how well I'm doing is due to LDN because my disease is fairly mild and I have had periods of very little symptoms without medication. Just thought I'd give a quick update!
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