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Any Updates from recent LDN users?

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Crohn's Disease
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Posted 8/5/2010 11:09 PM (GMT 0)
Curious to see how new LDN users are doing. Initially I noticed some results but now things seem to be leveling off again. I have no side effects from it anymore besides not feeling tired when I wake up in the morning.
Posted 8/6/2010 1:22 AM (GMT 0)
My daughter has been on LDN since last summer...tapered off Entocort last September.

The good news is still no symptoms, but the labs show mixed results...in May CRP was 2.4 (higher than normal for her - normal, before being diagnosed with Crohn's, was under 1). Vitamin D 1,25 was high...Dr Abreu found out that the process of Crohn's inflammation, itself, can cause high vitamin D 1,25, which can lead to problems like hypercalcemia. (In March her calcium was 10.4, slighlty above normal.) In May sed rate was low - only 6. So to give the LDN a boost, and try to lower CRP and vitamin D 1,25, she went on the strict SCD diet.    

Late June was diagnosed with a skin infection on her leg that has been there since last summer...oral Keflex was prescribed for a week. In July, a lab test showed CRP went down to 1.25, but anemia showed up for the first time in years. Vitamin D 1, 25 was higher than ever. I understand that meds like Keflex can lower CRP and cause mild anemia, so we can't tell what we are measuring here - is it the Keflex or only LDN/strict SCD? Nobody can tell.

So, soon she will have a third round of lab tests - the three month mark of being on strict SCD. The tests will include CBC, CMP, vitamin D 25 hydroxy, vitamin D 1,25 and PTH. When you see the high vitamin D 1,25, you need to know the vitamin D 25 hydroxy plus PTH status - in order to tell whether the result is due to disease or low vit D 25 hydroxy. BUT it's so frustrating, because FOR THE LAST FOUR LABS IN A ROW she tried to have the PTH tested, but the lab messed it up. GRRR. 

And, oh yes, I paid $$ to the DDW to get the preso about LDN from May's conference, but have yet to receive it. I probably need a time out confused

Post Edited (njmom) : 8/5/2010 7:42:06 PM (GMT-6)

Posted 8/8/2010 12:51 PM (GMT 0)
bump
Posted 8/12/2010 2:40 AM (GMT 0)
I've been on it for a year. My crohn's lesions are gone in my colon, my terminal illeum went from rock hard and useless and my illecosecal valve which was previously frozen open and hard as rock, both look like a normal persons now. This was verified via 2 colonoscopies, one before and one at the 6 month mark.

Oh, and for whatever it's worth, Jill Smith (of the LDN study fame) is now my doc and I've been very happy with Penn State, though ironically the healing happened the 6 months before i starting going to her. She's a doll. My local gastro went from a total non-believer to wanting to give it to a 7 year old, once she saw the 2 colonoscopies.

Post Edited (janicea) : 8/11/2010 8:45:02 PM (GMT-6)

Posted 8/13/2010 5:56 PM (GMT 0)
I would be very interested in any experiences people have had. My boy is starting at .5 mg this week

Posted 8/14/2010 2:16 AM (GMT 0)
Janicea, it's wonderful to hear about your success with LDN. I started 3 weeks ago today and am having a hard time with it. My symptoms have gotten worse, including increased bloating and pain, and I also have increased Rheumetoid arthritis in my hand at night and prolonged muscle soreness after workouts, not to mention occasional headaches, anxiety and NO SLEEP!

I started a 1.5 mg dosage and didn't sleep at all for the first few nights, then exhaustion took over and allowed me to sleep. Upped it to 3mg on the 2nd week, but couldn't take the no sleep. My allergies have gotten so much worse without sleep!

Last week, I switched to taking the LDN in the morning, and feel anxious and depressed in the daytime.

This seems to contract to every post I read about this being a wonder drug. I am confused about the day/night dosing opinions, and the dosage strength and frequency. Very frustrating that there isn't more support on this. I hope it gets better soon...

Posted 8/14/2010 4:24 AM (GMT 0)
hey gumart, i started with a dose of 4.5mg at night time. it really screwed up my sleep for the first week but then i got used to it. now i find that i get a comfortable 8 hours and wake up without any tired feeling whatsoever. i think ldn has helped me get over the hump. i've been on the scd diet for a long time but haven't had perfect results (ie i was having two bm's per day which were sometimes loose). Now i have consistently solid stools, sometimes going once a day. hope this lasts.
Posted 8/14/2010 5:21 AM (GMT 0)
Gumart, LDN won't work if you have a candida problem. Have you ever been checked for yeast?

I take 3 mg of LDN per night, and sleep like a rock. I do have very vivid dreams, but that's not much different than prior to LDN.
Posted 8/15/2010 12:43 AM (GMT 0)
I will mention to my Gastro doc the possibility of a yeast infection. I am a male, and if I understand it correctly it is more common in females? I don't have any symptoms that I'm aware of. I am hopeful, hoping to be more patient with LDN. My Crohn's symptoms today include constipation instead of loose bowel movements, and it has only been made worse by the LDN. I also had a very dry mouth for the first week but that has subsided. Since I feel even worse in the daytime, I may try to gradually move the dosing time through the afternoon, to the evening, and finally back to 9 or 10pm before bedtime. As strange as it was, though I didn't sleep and felt awful with the night dosing, I had surges of energy that I hadn't felt before. Just need to keep the enrgy but get some sleep. I refuse to use additional drugs to induce sleep, I never felt good the next day after an Ambien or Xanax.

What concerns me, is that every day we have untreated Crohn's we are doing irrepairable damage, and my bowel pain has increased directly with the start of this drug - I do not want more irreversable narrowing of my intestines while hoping that this drug "works".

And I think, until we have a very large scale study, is it as good as so many people say, or "pseudoscience" as a few have mentioned? Hoping for better direction w/dose and timing. Thanks!

 

Posted 8/15/2010 6:14 AM (GMT 0)
Candida lives in your gut too. We all have it, but some have an overgrowth. What is your diet like? Do you eat/crave a lot of bread and sugar products? Candida thrives on carbs. Constipation is one symptom of candida. Do you ever have a coated tongue, or do you have any itchy skin rashes? Those are also symptoms.

Check out this site: http://www.ldn-for-crohns.com/expect.html

It says that if you're not seeing results from LDN, consider going gluten and casein free, and cutting out the sugar. If candida is a problem, you'll need to treat it with either natural or prescription antifungals before the LDN will work. It tells what tests you can get done to check for candida.

I started LDN in January, one year after I started the Specific Carbohydrate Diet. My gut was already in pretty good shape from SCD, so it's hard to say if it's doing good things there. However, I sleep much better with LDN (I used to sleep poorly). If I miss more then one dose, I'll toss and turn at night. I used to have knee pain, but LDN took care of that. It hasn't helped my fatigue much yet, but I have untreated hypothyroidism (stupid doctor won't prescribe anything for it). I think that it my thyroid was taken care of, I'd have more energy.
Posted 8/15/2010 2:15 PM (GMT 0)
I got around the candida issue by getting the LDN as a skin cream. Works great. Candida can start to get better with LDN, but adding it as a skin cream gets you the time to work on the issue without exacerbating it. :)
Posted 8/17/2010 4:56 PM (GMT 0)
Gumart, for Crohn's, I'm not sure there's any benefit to starting with a lower dose of LDN and then slowly increasing it.

My daughter jumped right into LDN with the optimal  4.5 mg dose, suffered exhaustion, no appetite, and other side effects the first week, but by the end of the second week the side effects had disappeared.

LDN is used for MS, too - because it can initially exacerbate some aspects of MS, it makes sense to start a tapered protocol (slowly increasing the dose) for MS - but not for Crohn's.

The clinical trial used 4.5 mg right off the bat - why not go for it - the full dose at night (between 10 pM and 2 PM) for a couple of weeks? 

Seems at the lower dose you are getting the ill effects without the benefits because there's not enough of the med to do the job.

 

Posted 8/19/2010 1:40 AM (GMT 0)
I see my Gastro doc on Monday and will ask to be tested for Candida but I scored fairly low on the self test. I don't crave bread at all, don't have a coated tongue or any skin rashes. Love pizza though, my big carb weakness!

I agree that most of the lower initial dose problems occured with people with MS, but the side effects I feel at 3mg at night are unbearable. Without meds if I don't sleep for 2 nights straight I will crash the 3rd night, but this drug just won't let me fall asleep until about 4am every night and then I'm up by 6:30 or 7pm. It's almost not safe for me to drive and I am angry and anxious as well.

My Crohn's symptoms are worse, they weren't bad before starting, very mild symptoms actually but my colonoscopy showed moderate to severe inflammation. I'm also more constipated than before starting and that hasn't gone away in more than 3 weeks of taking it. I have read that Avicel might be a problem as the filler, and would like to find a compounder that uses acidopholus. I'm now taking 3mg at about 1pm so I can fall asleep at 10pm and that helps. Conflicting reports all over the internet about best time to take. Initially Dr. Bihari said between 9pm-2am I believe, but then said anytime is OK.

I think 3mg is an effective dosage for many people who have stated they do even better on it than 4.5mg but I do understand your theory njmom. Janicea, which compounding pharmacy offers LDN in a cream?
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