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Question and Report on Progress

Hello all,

Good news or bad news first? Alright, good news.

The good news is that I've gotten off Pred and onto LDN successfully (one failed attempt earlier this year) and about 6 weeks in I've seen what I'd classify as remarkable progress. Little to no pain or cramping, much better digestion, reduced BM's (1-2 lately, down from 6-8) and zero diarrheah most days now. Even some improvement in skin health and quality and arthritis. Maybe a bit early to declare victory but amazing progress.

My mom, who I know reads these forums (hi mom), has been on LDN for 4-ish months now and after having UC for 20+ years is also seeing some pretty amazing progress. Kev, if you're around she really appreciates your posts. Thank you from both of us.

The bad news is less bad news and more of a group project :p Now that I'm on the mend I am curious about a few things.

It was recently brought to my attention that my dopamine system has been FUBAR for as long as I can remember. At least since I was 12-13-ish. Also that pregnancy/child birth seriously messes with brain chemicals, as does a high stress level of course. All related to IBD.

So my question is specifically for anyone reading this that has found success with LDN. Do you and/or have you suffered from screwy brain chemical levels?

Depression? Sleep disturbances? Substance abuse? Anxiety? Just some examples.

Neurological chemicals are not something I've ever studied and I have a lot of reading to do but to know where to look and what to look for I'd really appreciate a larger sample size than just myself :) any and all input is greatly appreciated.



Senior Member
Well, I've noticed that I'm screwier than ever... but that is just my mentality, not LDN.

OK, seriously for a moment.... (and that is a hard stretch for me, difficult to achieve and more so to maintain)... Before illness, I was upbeat, friendly, easy going, devil may care... When I got ill..., I wouldn't say I was 'clinically' depressed.. although some Dr's asked about it... but I got to the point where I was sick and tired of feeling constantly sick and tired... AND.. I really struggled to see the light at the end of the tunnel, or to avoid focusing on the black depths the disease was presenting me. Any of this ring any bells??? Pretty 'normal' (at least I'd say) given the circumstances of this illness. Now, at first... in starting LDN... I was going thru pred withdrawal (anyone who has done this is familiar with the craziness that involves... mood swings off the freakin charts, etc., etc.)
I was suffering 'anxiety' levels that were pretty intense too. First off, an experimental treatment... outside the comfort levels of my doc.. no one else trying it to turn to for any support, advice, commisseration, shared experience... pretty lonely, frightening place. And, I... well, IF it hadn't worked, I had almost no options left that were viable. Or, at least enviable. So, I was... petrified.. it wasn't going to work. Then it started to. And it took me a long time to... relax... place faith in it... develop confidence that it was working, and would continue to do so. Talk about an emotional roller coaster. So, with all that going on... I figure my 'brain chemistry' was up and down like it was named Otis.
Despite that... I slept like a baby. Now, that is a... gift.. but apparently it also provides me 'therapeutic' benefits. Not everyone has that gift. So, your experiences may not mirror mine. You know what I mean? The drug (LDN) is the same, our diseases may be of significant differences, (extent, location, duration, etc., etc..) and our progress might not reflect one another... but I would expect that, those specifics aside, generally the ups N downs... and their affect on our brains... and the resulting effect on our brain chemistry.. would fall in the same ballpark. The only side effect I ever had on LDN were those marvelous dreams. Some folks HAVE had sleep disruptions, or found themselves feeling 'wired'.. (I believe this one is connected to when you take it, and whether it falls in line with REM sleep).. those aside, what 'affects' are normal psychological issues due to the illness, your prognosis, the 'stage' you are in with regard to diagnosis/prognosis, or varying combinations of all of the prior. Getting this disease invokes emotional turmoil, coping with it ditto... following courses of treatment that either don't pan out or come with some scary potential side effects also ditto (redundant???). On top of all that the drug that does work may add some. Even a drug with the lowest known side effect risk... doesn't mean it is risk free. Thing is... whether a few weeks, or even months, it is going to take some time to recover.. not from the disease itself directly.. but from all of the emotional trauma that comes with it. Give it time, wait to see if it settles down, then decide if there is another issue.. and whether it is related to LDN, or IBD, or both.

Just my thoughts... but, then, what do I know? I've always been crazy, and it kept me from going insane.(what song lyrics are those?) Now I just sit back and enjoy it.