I've been on LDN since January 2017, and it has been amazing. I'm flaring now because I had an underlying infection I didn't know about
, which is something LDN can't stop. After my last flare I recovered but I still didn't feel right. Within two weeks of taking LDN I went from a 6/10 in wellness to 9/10. Had way more energy, my little bit of remaining inflammation stopped, I started gaining weight -- it was pretty great. Because I'm on morphine for my current flare I've had to stop LDN (they have opposite actions). But once I'm on antibiotics for my MAP infection and my flare calms down, I'm getting back on LDN ASAP. I find it to be a miracle drug.
The mainstream medical community does not really know about
it. There's an independent organization called the LDN Research Trust that is conducting trials to provide evidence for the efficacy of off label use. If you just Google search LDN there are lots of research papers on there. There's also the Facebook group "IBD and LDN" where you can get advice specific to IBD.
I don't know the exact statistics, but I would arrange LDN patients into these groupings: most get some improvement but it's not total, followed by some acheiving total remission, followed by some having no improvement, followed by a minority who actually get worse. I can't attest to the success rate vs. biologics but my guess is that it would be more. It seems that people who use multiple therapies with LDN get better results.
I know the exact mechanism of how LDN works, scientifically, if you want me to just write it out here.
You need to find a compounding pharmacy who will make it, and it needs to have an avicel (microcrystalline cellulose) filler. There is much debate over what kind of filler works best for absorption. Some people are so against filler they insist on getting LDN in liquid form. The reason for compounding is that Naltrexone is normally used at higher doses of 50mg and doesn't come in the LDN form, so a pharmacist has to make it.
Finding a doctor who is
open minded enough to let you try it is always a challenge. Most are totally ignorant and choose to stay that way even if you offer them clinical evidence. I personally would not order it online but some people do because they are so desperate to try it.
Yes, you start with a low dose and work your way up. I started at 1.5mg and found it tolerable. My sweet spot is 3mg. Each person's sweet spot is different... it varies from as low as 0.1mg-4.5mg. Generally the LDN effect is lost if you go above 4.5mg. For me, 4.5 is too much -- too many side effects, like not being able to sleep at night and feeling run down during the day. More is not necessarily better! Some people can't up their dose as quickly as I did. They go up by 0.5mg at a time.
As for consumption method... the best way is on an empty stomach before bedtime. You need to take it between 11pm-2am to maximize its effect. I can explain why if you want. No, you don't mix it with water.
The results take time. My bowel mucosa took 6 months to totally heal, but my fatigue, cramping, blood and mucous, succeptibility to colds and infections, general weakness and failure to thrive -- they all went away within 2 weeks. By 6 months I was eating foods I haven't eaten in years. A lot of LDN users with IBD say that after 1-2 years they can even eat gluten again, though most choose not to. I would say for initial results you should wait 3-6 months. If you get intolerable side effects (like sleeplessness) that don't go away with dosage adjustment, then LDN might not be for you.
The results depend on the severity of your condition, and what your immune system is doing. LDN tweaks the immune system in a very specific way and if that specific way is not your problem then LDN won't help you. But if you're lucky, LDN will be like a lock-and-key for your body and you'll get great results. I recommend joining that Facebook group if you have FB.
Post Edited (Connor77) : 10/5/2017 2:45:04 PM (GMT-6)