Who's tried LDN, and what are your results? PART III

Octobergirl said...
Hey laughingduck,

Did you stay on the 3 mg for LDN or move up to 4.5? We started around the same time, and I was seeing improvements but I seem to have taken a turn for the worse. I have only been taking 3 mg, but now I'm wondering if I need to bump it up to 4.5. I really don't want to go on Imuran.

Hey octobergirl -

I'm not laughingduck, but I think the dose really varies from 1.5 to 4.5 mg. I don't believe there is a fixed dose of LDN that people need to take and it depends on entirely on symptoms (and or side-effects) people are getting. When I was taking it, 4.5 was way too high initially and caused sleep disturbances, so I had to work myself up to 3.0.

Some trouble shooting tips:

1) LDN also works better with an anti-inflammatory protocol. If you look up Dr.Berkson's NIH lectures, he had his patients getting sunlight, exercise, eating leafy greens, and avoiding junk food and so on.

2) Are you taking the trandermal cream or pill? The pill might have fillers that might be causing issues. I think InSoFla had issues with the avicel filler, but the transdermal form worked out for her just fine.

Best.

Octobergirl said...
Hey guardian,

Thanks for the response. I'm on the LDN pills. I thought I originally had an issue with the avicel filler, since I had some nausea, but it subsided pretty quickly, but I don't know if that means the filler is OK with me. Unfortunately I went to get my refill and had to speak to my GI's nurse practitioner, and she would only refill it for 30 days and is having me meet with my GI again. I'm not even sure my GI will refill it next month since he was not optimistic that it would work, and I'm currently not doing very well. I'm not sure what happened, because I was feeling fairly well but suddenly took a turn for the worse.

I'm looking up Dr. Berkson. I hadn't heard of him before in relation to LDN except for I think on a Chris Kresser podcast. Are you suggesting the ALA as well? I've been trying to follow the AIP and am reading The Paleo Approach, but I haven't gotten that far into it yet, so I just kind of know the general principles.

I'm hoping I can get my inflammation down before I meet with my GI again so he can feel OK with refilling my LDN. Thanks again for your input.

Hey OctoberGirl -

Berkson has a few lectures on youtube, but yeah Chris Kresser did talk about it.

He does put his patients on ALA, but I was just suggesting other things like the paleo protocol or the perfect health diet by the Jamiets, which you already know about. :)

Hello! Just wanted to update...

I'm taking 4.5mg (1mL) of transdermal LDN nightly (since Feb 2014) and doing very well on it. No side effects, not even vivid dreams constantly, as described. It seems as the years go by, from being diagnosed in 2011, my body seems healthier than ever. Although this past year with my two flares (October '13 & February) were very intense, I was able to get rid of them after three weeks or so. I'm still fearful for my future, of course, but since seeing a therapist and just doing some growing, i'm trying to deal with emotion in different ways.

I currently take VSL#3 and maybe 8-12 tablets of InflaGuard daily, and 800mg asacol. I'm also 100% gluten free and mostly dairy free (except butter and on occasion at restaurants).

Big thanks to InSoFla for really pushing LDN, i'm very happy with my results. I don't know what 'normal' is anymore since being diagnosed, but typically I have 2-3 bowel movements daily, formed, sometimes fat isn't absorbed well from what I can see, but otherwise doing good. My stomach must be small though, I will feel as though I might need to hit the bathroom at a certain point during the day, and i can 'tip the iceberg' by eating something else, and then I will have to go.

I have thoughts about my future, maybe fears: becoming intimately involved, something happening with LDN as a prescription, and just the overall balance of UC. As researchers take great strengths to quicken new medicine on the market, I'm hopeful that alternative medicine will work swiftly to discover what herbs/supplements will have the most benefit (for the sake of forgoing side effects and long term body damage).

Hope all is well at HW.

The resources sticky thread discusses LDN. It has the number for Skip's Pharmacy who might help you to find some research papers. I believe LDN might be more effective for Crohn's than UC. If Skip's cannot refer you to some research then maybe they can refer you to another doctor who might prescribe LDN.

Burli said...
I did SCD to the letter of the law and it was junk science...

Maybe it was for you but please speak for yourself because nobody ever said diet works for everyone. Can you name me a conventional med that works for everyone? (OK, maybe prednisone but its long term side effects are so horrendous that nobody would recommend pred as a long term conventional med that “works” for everyone).

Here are some studies showing the efficacy of diet. Granted some of these studies are small but the point is made that apparently for at least some people diet is NOT junk science.

https://www.ncbi.nlm.nih.gov/pubmed/27194533
RESULTS: Epidemiological studies highlight the key role of diet in IBD development, and many IBD patients report diet as a triggering factor in relapse of disease...
Diet may offer an alternative approach to restoring deficient innate immunity in IBD, and this may be the scientific rationale for providing dietary counseling for IBD patients.

https://pulse.seattlechildrens.org/novel-diet-therapy-helps-children-with-crohns-disease-and-ulcerative-colitis-reach-remission/
In a first-of-its-kind-study led by Suskind, published today in the Journal of Clinical Gastroenterology, diet alone was shown to bring pediatric patients with active Crohn’s and UC into clinical remission..
patients were put on a special diet called the specific carbohydrate diet (SCD) for 12 weeks as the sole intervention to treat their Crohn’s or UC...
At the end of the 12 weeks, eight out of the 10 patients who finished the study showed significant improvement and achieved remission from the dietary treatment alone

https://www.sciencedirect.com/science/article/pii/S2212267215005043
The Journal of the Academy of Nutrition and Dietetics, data was collected on 50 physician-documented IBD patients, all who were following the SCD diet and in remission. The participants followed SCD for a mean (average) time of 35.4 months...
The SCD diet was rated as 91.3% effective in controlling acute flare symptoms and 92.1% effective at maintaining remission (as a mean)...
“Our survey results suggest that SCD can potentially be an effective tool in the management of some patients with IBD and specifically in patients with colonic and ileocolonic CD who made up the majority of our study group...

If following the SCD changes the microbiome significantly and/or reverses some of the dysbiosis reported in patients with IBD, this may be a low-cost intervention to induce and maintain remission with little or no known adverse reactions."

Post Edited (IamCurious) : 4/13/2019 7:54:34 PM (GMT-6)

"junk science" is inaccurate on my part so I'll strike that out. I cannot prove it is. Good call, Iamcurious.

I see the study of 50 physician documented SCD patients who rated SCD as 91.3% effective. I wonder if people like Blueclassring were in that study because it was the solution for him back in 2008 until sometime before 2012 when in this thread he's talking LDN..

I want people to come back and tell what exactly happened. I like details and add context to anecdotal evidence.

The kids in the Seattle study...they had mild to moderate Crohn's and they are kids. I'd love to talk to the parents. Is it that they merely eliminated certain foods for which the kids were having issues. Meaning, maybe rice and other grains would be fine but it was really the improvement in nutritious foods which helped. Also cutting out junk foods (was it chemical preservatives or artificial flavors and colors they eliminated that helped).

I'm not a 'diet doesn't matter' person. I'm more a healthier eating person in addition to other factors (who knows?). Indian food is full of SCD-prohibited items but the incidences of IBD in India is very low in places following traditional Indian meals. Same for Africa.

SCD takes you towards a much healthier path of nutrition. If you follow that diet it appears you are eating healthy to me. That's why I tried it twice. I desperately wanted it to work. Especially because of the neurological claims, the halting of seizure. I have epilepsy. It seemed like I had found the perfect answer.

Try these things with caution and let your physician know. Don't push it past the point of getting ill with fever, profuse bleeding and pain thinking you'll get better if you just starve your digestive tract of those evil carbohydrates. Don't hold on that you're about to break 'that viscous cycle' if you only last a while longer and hold to that strict diet. It might help and so might other things more.

If my daughter had colitis I'd want her to try a healthier diet and look for potential problems in what they're consuming. Also, I'd suggest she populate her gut with good bacteria.

As for Blueclassring and what became of his SCD story or this LDN, maybe he'll check on here, see my post and respond to help folks out.

Post Edited (Burli) : 4/14/2019 10:21:41 AM (GMT-6)

Hi Burli,

Thank you for being so gracious in your reply.

Even though I consider diet crucial for my remission, I really cannot recommend the SCD. There are too many 'legal' foods that give me trouble, and even more 'illegal' food items that are perfectly fine for me to eat. I am convinced that a big reason why the SCD is effective at all is because bans gluten, and there are a lot of people who are gluten sensitive.

I just keep a food diary to isolate triggering foods. Some of these are listed in my signature. Actually I was impressed with your first post the other day, you seem to eat even better than I do, even though I am the one supposed to be careful about what I eat:

Burli said...
for breakfast i eat fat free chobani yogurt mixed with a can of low sugar sliced peaches (kept in fridge so they're good n cold) with some blueberries thrown in.

Been on SCD since last July. It helps me quite a bit compared to a standard american diet but still not in full remission.

LDN, I've been on it for something like 20 weeks now. I've noticed no benefit so when I run out of it at the 24 week mark I'm not going to continue.

kchw496 said...
Has anyone also tried turmeric?

I notice decreased symptoms when I take concentrated bioavailable curcumin, can't say I've noticed much from turmeric.

Good to hear about the turmeric/curcumin. Yes, a hydro-soluble form of curcumin in supplement form absorbs better than ordinary spice form.