My Quest for LDN

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Yeah... My sleep schedule is pretty weird too and some nights I don't get to sleep until around 3ish. I believe the general consensus is that you should take LDN between the hours of 9 and 11pm so that it wears off during the bodies natural production of endorphins for the optimal exposure to OGF.

If I explained that wrong, someone please jump in! But I am pretty sure that is the reasoning behind the time to take LDN.
 
Yeah that was always my understanding of it as well, but I thought that sleep might have something to do with it. I only ask as i'm a student and i'd hate for this drug not to work out for me just because I can't be in bed by 11 every night!
 
I have read that it is supposed to work while you are sleeping but there is conflicting information. Dr. Zagon thinks it can be taken at any time of day while Dr. Bihari and Skip Lenz believe in the night dosing.

Conflicting information like this really bothers me about LDN but hopefully with the supposed phase III trial coming up, we can get definitive answers about these questions.
 
There are conflicting thoughts, but most of what I have read suggests that LDN should be taken between 9pm-12am, even if you work the night shift or if you plan on being up for most of the night. Endorphin production peaks in the pre-dawn hours, regardless of when you go to sleep. So, that is the reasoning behind it. I have also read that LDN will still work if you take it in the morning, but it may not be as effective. Endorphin production can occur throughout the day, but it peaks in those pre-dawn hours, so taking it in the late evening will trick the body into producing more endorphins during the peak time.
 
I went in today for my orientation for the TSO study.

Next week I'm providing a stool sample for fecal calprotectin and at some point during the study, I'll have a colonoscopy.

I have not been instructed to stop taking the LDN yet (they are finding out if I should stop taking it).

So, hooray for fecal calprotectin and a colonoscopy to see how the LDN has treated me. It will be interesting to see if the ulcer on my ileocecal valve has shrunk any.
 
Well, my CDAI turned out to not be high enough for the TSO study :frown:

I'm a little bummed but mostly I'm annoyed because the CDAI doesn't really represent me in the first place.

The good (not so good) news is that part of the results came back from my stool sample and it showed that I have blood in my stool so, there's obviously still gotta be some inflammation.

The study nurse at the GI's office recommended I start on entocort. Their practice is really small and I really like them so I asked if they would take me as a patient and they said yes. So, I will have an office visit to meet with the doctor soon and hopefully get the inflammation down with entocort.

I'm going to stay on the LDN because I'm pretty sure they can be used together.

Oh, well. I'm trying! :voodoo:

At least I got some free lab work and 100 bucks out of it.
 
Thinking of you buddy! Please keep us posted about this; I've used budesonide (Entocort) previously when I was first diagnosed and flaring, and I would happily use it again if (when?) the need arises. Hopefully it can still be taken with LDN, and I'm guessing it can as 10mg of pred is also kosher from what I've read.

When I took budesonide, I freaked out super hard and thought it was because of the meds, but in retrospect, it was probably because I was horribly depressed. I stopped taking budesonide and still felt miserable. Once I tried taking it again and sticking with it, it did it's thing and I gradually started to feel better. It's also much less systemic than prednisone (as you probably already know), which is a big positive in my book. I've taken pred before for a bout of hives, and it worked, but MAN did I feel messed up.
 
Ctrl Z we put Jack on Pentasa along with the LDN about a week ago because we are pretty sure there is still some inflammation in his small intestine. His GI wanted to put him back on Imuran but with as good as his scopes looked and blood tests were (which is better then any time since diagnosis) I still think LDN is doing a better job then any other med we have been on so far and just needs a little extra help.
Hope the Entocort does the trick
 
LOL yeah

I'm feeling better. Going lower residue with my diet lately and I feel like its helping. I'm going in for my entocort Rx on the 4th so hopefully that makes me feel awesome. Trying to not get too anxious about it so I don't freak myself out :biggrin:

Are you ok?
 
HEE-HEE. I was thinking the same thing.
How are things with both of you JDTM and Ctrl Z.
Jack doctor is scheduling him for an MRE. I think he is convinced the LDN is not working because we haven't seen growth and weight gain but scopes from a couple of weeks ago showed no disease activity and bloodwork was great!
He ran a Prometheus prognostic which came back with a lot more markers for severe CD including stricturing and fistualizing disease, so I'm content to check for thickening of bowel wall and then decide but his doctor wants to switch him to remicade. If there is no thickening we are definitely staying with LDN.
So lots of questions and no answers yet.
 
No need to freak out, you got this! :D

I'm doing OK -- LDN is still doing it's thing I think... had a rougher-than-usual day yesterday, but nothing super awful. Today is much more back to normal. Had an Orgain this morning to settle things down a little bit, mashed potatoes and fish the night before, so it's smooth sailing at the moment. Gastro appointment on 3/5 -- we can compare notes after that. :)
 
Thanks for posting Lisa. Interesting about the ESR
A trial of ten patients is small, and caution needs to be used when interpreting the results. However, if you are wondering if 4.5 mg per night of naltrexone might work for you, it may depend upon your erythrocyte sedimentation rate (ESR), a blood test used as a general marker of inflammation. Those patients who had the best response to naltrexone also had a slightly elevated erythrocyte sedimentation rate (ESR). The four patients who had low or normal ESRs did not appear to respond to the drug (e.g., their ESR was 20 mm/hr or less).
Click to expand...
 
Thanks, Jesse! I'm glad you're feeling better today.

Jacqui, I hope Jack gets great results from the MRE!
 
Went to my new GI today. I really like him and his nurse!

We went over everything and they agree that entocort is what I will try to get this little bit of inflammation down. I actually overhead the doctor tell the nurse that I have one of the mildest cases he's seen lately. So, apparently over at the my last GI's place, they tell mild crohn's patients they should take Humira. So glad I stood up for myself! I knew Humira was NOT the right choice for ME.

I'm waiting on my Rx for entocort to be filled.

Hopefully the entocort gets the inflammation down and it'll just be me, my LDN, supplements, and lifestyle that keeps me well. I'm no longer taking Pentasa.

They also told me the results of the fecal calprotectin that I had done for the TSO study (that I didn't get in) and it said it was at 45 (below 50 is the range for normal) but, as I stated in an earlier post, there was a small bit of blood in my stool and that could have been from the ulcer they found on the ileocecal valve back in July of last year. My CRP was also normal.

I'm having my vitamin D level tested too. Just had that blood drawn so in a couple of days I'll see how that is doing. Two years ago it was at 25, last year it was at 50, and hopefully now it is still where it is supposed to be. I'm actually a little nervous that it may be too high.

We'll see! :smile:

They also gave me free samples of VSL#3. I've always wanted to try it out. I'll test it in a few days.
 
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That is really good news.
Glad you stood up for yourself. So Humira would be the super duper top down approach for you :)
Hope the Entocort works quickly and LDN, supplements and lifestyle leave you feeling like you don't have Crohn's
 
Glad you're feeling well, have you ever heard of glutathione before? I have been taking 6 max GXL a day, (per cursors of glutathione as our body can't digest it) and have been feeling healed. I think it could help everyone on here, it reduces oxiative stress amongst many other wonderful things it does. Anyway check it out for yourself :) someone posted a thread about it
 
Thanks, Joshuaaa!

I've actually been supplementing with L-glutamine for the past few years now. I believe it helps with glutathione. I should read more about how the two are related. I'll look for the thread :smile:
 
That is great Ctrl Z! Hoping Jack's is getting up there since we started supplementing. I can't remember but he was either 30 or 33
 
Yep. 30 is considered the low end of "normal," officially, but I think the general consensus is that people should be shooting for a minimum of 50, ideally.
 
Cheers, I Havnt got my levels tested yet, though I'm assuming I needa up my intake coz I'm avoiding sunlight now that I'm on imuran, I have about 3000 iu a day, hopefully enough for me, I'm only 120 pounds (always been skinny)
 
An update:

I've been taking entocort for 2 months. The first month, my period came a week late and I experienced dizziness. This month, I had really emotional pms. I actually had an anxiety attack in one of my classes and had to leave. I was pretty mortified. My period this month came a week early and today, after thinking it had stopped, started all over again.

So, first month--normal period that lasted a week but arrived a week late.

2nd month--a week long period, a week of spotting, and today it started all over again.

Good times. :voodoo:

My GI isn't convinced it is related to the entocort and wants me to get checked up with my Gynocologist. The entocort is the only thing that's different in my life so it seems obvious to me that it's related.

Getting checked up by my Gyno anyway.

*oh yeah... I also am having high blood pressure and have developed a small rash on my lower back.

I've stopped the entocort. It's just the LDN and my supplements right now.
 
Thanks ya'll.
I have an ultrasound scheduled for Monday. I really don't think they will find anything there but will be good to be sure.
 
Oh boy....I cannot tell you just how furious I get when I read posts from patients who are willing to give LDN a go for their ailment and they go to their doctor only for them to simply say no can do. I've been around this whole thing for many many years and ok...it was very difficult in the early going and I was darned lucky to find a really out of the box doc who was wise enough to look at what I was asking for and said he had worked with Naltrexone years ago. Since I was only asking for such a low dose he reasoned that it was worth a shot. I say that if you are seeing a close minded doc, FIRE HIM. He works for you after all. Go to one that will be willing to look at your findings and smart enough to see the writing on the wall. Find a doc who is not simply sitting at a desk writing prescriptions all day. These drugs are cash cows, believe me. This is how the whole crappy paradigm is running these days and is very sad to me. So many people could be helped with many different ailments and I know it makes no sense to some how so many different things could be helped with LDN. If you research it you will see that it all has to do with how the endorphins affect the immune system and many different ailments are the direct result of the immune system. I wish I had more time to spend here with this post but for now I wanted to just say People...it is your right to be able to do your research and look for a doc who is a thinking person. I have been on LDN since 2002 myself for MS and am very thankful to have found it. I maintain a spreadsheet of "LDN friendly" docs all over the country and am most happy to share info to anyone that writes to me of any docs in your direct area. It has been a lot easier these past few years and even Dr. Mercola had a blurb in his newsletter about it. Take that info to your docs....should go a long way. Ask them if it were them or their children...would they resort to those very harmful synthetic drugs that do more harm then good or just a tiny dose of a drug that actually works. I will do my best to help you if I have any info for you. I think it's great that you are all connecting this way. *s*. Just send me a private message, as I said, I have a list of docs all over...good luck to all that come here.
 
Still using LDN 4.5 mg. Also taking 3mg of budesonide in the morning and 4 of the big pentasa pills in the evening.

Just had CBC and CRP. CBC looked great and CRP was .08

Not sure what is due to what but I'm satisfied with it.

I feel great. Very physically active and my diet is still very clean.
 
That is fantastic Ctrl Z! Hope it continues on.
Jack has GI appt on Tuesday and we are supposed to do labs but I'm thinking we may hold off as he got a bug bite at camp last week that is now infected- celluititis, so he is on 2 different antibiotics for the next 10 days and I'm afraid it may affect the results since he obviously has inflammation going on in his body
 

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