LDN... yep, my trek

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katiesue1506

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Nov 14, 2006
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Hey guys, I am documenting my LDN journey, since I know it will be helpful for a lot of others since its relatively new. I took my first 4.5mg dose last night.

Woke up this morning and:

No bad dreams
Normal night sleep
Woke up more easily
Have had one bowel movement (a 3 on Kev's scale) or a 6 on the Bristol scale


So far... inconclusive. :)

I'm very optimistic though, and I will report back tomorrow hopefully.
 
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Well I had a blood test that indicated I'm anemic again (11.8) which I don't think is anemic at all since I'm supposed to be between 12-14. But anywho, my doc placed me back on iron (ferrous sulfate 325mg) and I'm also taking Vitamin C to aid in the absorption. Other than that and an everyday multivitamin, I'm taking nothing but LDN.

I'm excited to see where this takes me. :)
 
around 8 you need a transfusion and at 7 you need to be hospitalized so your anemia shouldn't be a problem. I have an incurable untreatable type of anemia and I have dipped into the high 8's but stick around 10 or so. Hopefully the pills will clear you straight away! Good luck.
 
yeah I was like 8.8 at my lowest, so I'm not sure why they are being so stingy now... but I'll take my pills like a good girl. :)
 
If I had an iron deficiency, I would try yellow dock pills, parsley tea, and some form of watercress. I think these tend to be easier on the body than Ferrous Sulfate.
 
Hey guys... days 2 and 3:

Very tired, I slept through the nights, but didn't wake feeling rested. Today has been a particularly hard day as far as battling fatigue. (Work was a big stress ball too so that hasn't helped). I have a feeling that most of my symptoms I'm having now like the fatigue and occasional pain is due to the large amounts of stress I'm having. I'm waiting on information to see whether I was chosen for a scholarship, my roommate and I are butting heads because she is dumb, and my boyfriend and I are moving out of our apartment soon into another so we have a lot of planning to do. It should all go away soon though, and hopefully I can return to normal.

The other night (Day 2) after taking the LDN, I stayed up quite a bit later than normal, and I felt like I could tell that endorphins were being blocked. I could be completely making this up, but I felt an immediate panic come over me... it went away once I went to sleep, but it was weird.

I've also noticed I've been very anxious for the past month. I just feel like there are butterflies in my heart and stomach all the time. I think its because I'm holding in all of my anger with my roommate and not letting her know how I feel, but I've decided to take care of that today and let her have it.

Sorry this isn't as upbeat as my normal posts, just feeling a bit down today due to fatigue and the roomie situation, as well as an argument I got into today with a coworker.

Have a good day all!
 
Awe Katiesue I hope your stress leaves you soon. If you want I'll let your roomate have it.:)

I hope everything starts working out for the best for you.

Best of luck
 
Hey guys!

I did let my roommate have it... and she ACTUALLY apologized to me for walking all over me! I was so happy to see her finally own up. She's still dumb... but I feel a lot better. Also, I decided to take tomorrow off work. I haven't had a day off in about 3 or 4 weeks and for an hourly position that's a long time. I've decided to sleep in tomorrow and just let my boss decide how to run the cafe alone... he left me to do it one day for 5 hours alone... why can't he? I have a real problem with assuming responsibility for things that aren't my responsibility. Like at work... I always worry that things aren't going to get done or that we will run out of things or something like that... when in reality its my manager's job... I'm just an associate.

So anyways... I'm making tomorrow my personal day of destressing and my boyfriend and I have decided to go to the lakehouse for the weekend. I need it.

Thanks for your support! I take my LDN here in about 45 mins... I'll report
back tomorrow hopefully.

Katie
 
If I'm not intruding, may I ask how you ended up with that roomate? I mean did you know her before but not know what living with her would be like? Or was it like a personal ad that she replied to or what? She doesn't sound like much of a harmonious person.
 
Woohoo Katiesue that's awesome. Take some time off and relax. I know what you mean about running a place by yourself. I once worked for subway and I was running it by myself for about three hours during rush hour. It was terrible, I made 60 something sandwiches myself before my boss came to help me.
 
Hi - I am hoping my DR will prescribe LDN for me - what are the side-effects ?

Can you still drink ?

God I sound like an alcoholic !!
 
If I'm not intruding, may I ask how you ended up with that roomate? I mean did you know her before but not know what living with her would be like? Or was it like a personal ad that she replied to or what? She doesn't sound like much of a harmonious person.
Click to expand...

Well we were really good friends my freshman year in college. Then she turned 21 and started drinking... and with the drinking came bad decision making skills. She's also the type that feels entitled to everything because she was the baby of the family... and the only girl.

Hi - I am hoping my DR will prescribe LDN for me - what are the side-effects ?

Can you still drink ?

God I sound like an alcoholic !!
Click to expand...

The only side effects are disruption in sleep and/or vivid dreams which tend to go away after the first week of usage. As for the drinking thing, Naltrexone, in its original 50mg use, was used for heroin addicts and alcoholics to help diminish the feel-good feelings from such drugs. So I'm not completely sure on that one. Personally with Crohn's, I wouldn't even think about pouring alcohol into my system... like rubbing salt in a wound if you ask me.

Of course I'm the wrong person to ask, because I have personal issues with drinking alcohol. Back in the day it was necessary to drink it because it was the only uncontaminated form of drinking liquids. Now we have filtered water and water plants and I don't see a reason for alcohol. It doesn't even taste good. I also try to stay away from anything that could be habit forming because I know I have an addictive personality. Anyways... someone else like Kev or DBergy may be able to better answer your question.
 
"Teetotallers"??

Anyways, I see Katie....I know many people like that, as I myself have never drank in my life except the couple sips we all often get as children, I can't stand the thought of it or the smell (which I assume it has to taste like it smells)...the body treats it like a poison and filters it out no differently. Even before Crohns, I had this conviction, never been my thing and I saw a few friends "go to the dark side" with it and live their life around it, and use it as a crutch to have a good time.
 
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I went thru a similar sort of thing... I thought it was the anxiety of waiting to see if the LDN would work.. I found that the best course for me was to take my LDN at bedtime, then go to sleep. That limited any noticeable side effect to the occasional vivid dream. In the past 2 years, I've only had 2 glasses of beer... each on a birthday. I didn't notice any deterent feelings to drinking it. I do notice it with tobacco. I hate smoking, and hope that my GI will give the go ahead to quit. I suspect that tho LDN curtails our wonky immune response each day we take it; that stressors or illnesses can cause flares.. So, dealing with anxiety, stress, or other major issues is to be taken seriously. The emotional upheaval I've undergone recently had me slipping... but I kept on my LDN, stuck to my diet, took my other meds (5-ASA) N vitamins; and everything seems totally back on track now. The timeframe for LDN to show major, inarguable benefits is not overnite. Time is required for your body to health naturally after the wonky immune system is shut off. Don't be surprised if its 6 - 8 weeks before your energy levels get better; esp. if you're dealing with a problem room-mate and all of that worry about moving, school, etc.. Just keep thinking positive thoughts, OK?
 
I always try to stay positive in everything I do. So at least I've got that going for me. I'm writing this from the lakehouse... its a pretty day, I caught some rays and now I'm just watching the skiers and jet skis go by.

I had a VERY solid stool today (1 Bristol scale... 10 on Kev's scale). I'm not sure if this is a good thing or a bad thing though... I'm borderline constipated. I have been having pain lately, but it's manageable. Gas seems to have increased a bit... or else I'm noticing it more. Still no conclusion on LDN, but I don't expect one for a long while. I've noticed I've been eating less and I don't know if its a summer thing or if I'm slipping deeper into a flare.
We'll just go for the summer conclusion for now :)

BWS: Yeah... same here... I drank a bit in high school because I thought I was cool... but after those few times I wised up. I dunno... I guess that makes me a teetotaller. Lucky for me my boyfriend is too :)
 
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Oh no I feel like an alcoholic now :(

I am not a regular drinker at all - maybe every 2-3 weeks I will have a couple of glasses of wine.

However I hate it when my meds stop me being able to do that - it's not a case of "oh i NEED to drink" more that I like to have the option.
 
Hmmm, I always thunk it was 'teatotallers'... not to be confused with folks like the late Sonny Bono they're 'tree totallers'.. OMIGAWD, did I actually say that? My bad...
 
That's odd I've never heard that term until now, seeing as how that seems like it shines a light on me as a poster boy for it (health, philosophical, and social reasons apply).

Growing up the kids/peers called this being a "straight edge", and it included drug usage too, I guess stemming from being able to see things NOT blurred, or being able to walk a state troopers line on the highway on a Saturday night, who knows....

Hey Katie, did your doc give you any stipulations on this LDN "go-ahead", like if you don't improve in X number of months he won't keep trying it on you, since you had to convince him to let you try it out?

Edit: and FruitLoop, I'd never call what you partake in being close to alcoholism, I understand what you mean, you don't want to disrupt your occasional moments with a certain habit/relaxation outlet.
 
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Yeah, I'm the same way. Never touched the stuff. I get my high on life.lol

Katiesue hope you had a relaxing weekend at the lakehouse.
 
BWS: Nope, no real stipulation, however I noticed that my prescription is for 3 months... so I guess three months :)

The lakehouse could have been more relaxing, but better than at home.

Today I didn't have a BM till around noon. It was solid. I guess that's pretty happy. I've still had pain though, and some nausea. I slept a little better last night, as I wasn't drained when I woke up. I have a little more energy today. I have a lot of gas. I think that's all I know.
 
If you are getting constipated get some miralax. It doesn't hurt the stomach with bloating and stuff and it will help you go or at least soften the stool a little bit. Hopefully after you have a nice BM you can get rid of some of that gas.
 
Yeah, 3 months is about right. 12 weeks was my 1st one, and thats straight from the original test group study... rite now my fill in GI has me on monthly refills, which is a pain in the ass N expensive. 84 pills cost me $90, but 30 are $50 fortunately my reg GI is back the end of this month... all the best Katiesue
 
Kev: I got a one month fill for 74 dollars... and its 90 pills (3 X 1.5 mg)... are they cheaper when they are made in 4.5 mg? I thought my price was a bit high. Also, did you notice being VERY grumpy the first week you were on the LDN? This week I'm a lot happier and have a lot more energy... and my boyfriend and boss at work both mentioned me being a lot happier.

Today I wasn't constipated... I had the URGE to go at about 5:45 this morning... which is about 25 minutes before I wake up normally. It was a 7 Bristol Poo scale and 2 on Kev's. Then I went around 1:30pm and haven't gone since. Still gassy and not liking it. I think the iron is what's making me constipated. I skipped a dose today and just took a multi that had 50% DV of Iron in it and wasn't constipated, tomorrow I will take the iron and see if I am constipated... and I'll report back.

I am trying to cut out soda again... I am down to about one a day, or only when I go out for dinner depending on the day. I'm doing this for a couple reasons... one is because the fizzy makes my tummy hurt :) and the other is because I only drink Diet Coke and aspartame isn't good for me. I've been drinking water, OJ, and Pink Lemonade.

I'm taking my iron with food too and that seems to stop the stomach pain it causes.

Today I felt great... some pain but not much and I went on a 3.5 mile rollerblade with the dog and bf. Get this: I wanted to go play tennis tonight, but Bruce says HE'S too tired :ylol2: I'm wired!

Yesterday I noticed a lot of leg and joint pain... I think that's just inflammation typical of Crohn's.

So far today has been a positive day. I'm eager to see what LDN has in store for me! And I'm willing to give this a 3 month go!
 
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I think some of what u r going thru is from the withdrawal from other meds, and possibly early flare like symptoms, and those iron pills. I was off of all drugs except 5ASA for quite a while before I started on the LDN. I don't seem to recall an issues like that; but with my memory. Maybe I should take a stroll thru my early LDN diary, see if any of these ring a bell. if you are down to one pop a day, why not try ginger ale. its supposed to be good for us...
 
Hmm... iron pills are a possibility, but I wasn't on any medicines prior to LDN, I've been med-free since February. All I know is that I was REALLY grumpy.

Still haven't used the bathroom since 1:30pm, and it's now 10:18pm. I take my LDN in one hour. For some reason I decided that I like to take it at 11:15. I don't know why... just chose it I guess. :)

Tomorrow is my last day of work this week since I asked off Thursday a couple months ago and Friday is 4th of July. This 4 day weekend is much needed and will be enjoyed. Yeah I know... I JUST had a 3 day weekend, but that was mostly a personal day to help me NOT freak out and go insane. And what are we without our sanity? :)

Man... I sound so lazy with all my days off... I promise, I'm really not usually away from work this much :)
 
Well, besides the occasional pain, and the occassional urge to go... I'm pretty good. I've had about equal amounts of solid good poos and bad poos. I'm not so tired this week and definitely not as irritable.

I did goof up last night. I came home for the holiday and Bruce stayed back at the apartment, and so I was going to sleep last night and completely fell asleep before I took my LDN. Had that happened with Bruce, he'd have woke me up and told me to go take my pills.... sometimes I think I'd lose my head if it weren't for him. It's nt a HUGE deal that I forgot I don't think... I'll just take it tonight and get back on schedule. That's just so out of character for me though... because I'm usually really good at remembering these things! Oh well...
 
Oh you guys!


Anyhow... I haven't reported anything, because there's not much to report. I have my really good days and my really bad days. I still have pain, diarrhea, sometimes an urgency. I've been checking my temperature lately and its normal for me (97.7). I won't pretend like I'm not discouraged.... because I am a little bit. But I just keep telling myself that I have a 3-4 month benchmark I gotta make. I have to just keep on keepin' on. On the positive side, I only have a month left of stress. The scholarship competition I entered is supposed to release the winners this month sometime and I move into my new apartment the 1st of August. I'm really excited to move... but its a positive type stressor, and a stressor is still a stressor.

I've almost cut out all diet coke from my diet now. I only drink it if we go out somewhere. At home I drink purified water (we bought one of those fun faucet hook up doo-hickeys) and we keep a cold 2 gallon dispenser of it in our fridge. I'm still trying to get out and get some form of excercise on most days. Usually rollerblading, tennis, or just going on walks with Lexie (the weimaraner pup) and Bruce (the bf).

My diet food-wise still sucks. I just don't regulate it very well. Today I made homemade cinnamon rolls (complete with yeast) and then I had a slice of pizza and a breadstick for lunch and then some leftover rice for dinner. Can we say CARBS? I just love them... my favorites actually behind sugars.

Well I suppose I'll end this long post. :)
 
Ok, katiesue.. you want this to work? then you start giving your body a fighting chance. Eat sensibly.. wait for your condition to stabilize. Do you take 5ASA.. keep taking them. If not, see if your doc will give you some. once things stabilize... way more good days, only the odd bad day, then experiment with your diet. Or, follow it till you can't remember your last bad day. Then see if you want to jeopardize that. Remember, LDN isn't a miracle cure. It just gives your body a fighting chance to beat these bad bugs. Help your body out. Behave yourself. Give this your best shot, ok?
 
Hey guys. I want to go and talk to my GI about LDN. Can you tell me where I can get some info on the interenet so I can be prepared for the discussion... Thanks and good luck......
 
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Hey guys! Doing pretty good. I'm not quite sure how to manage everything right now. It seems that diet isn't playing a huge part. Yesterday I had waffles, a cheeseburger, and cheese pizza. I felt pretty good all day. Today I had pancakes, chicken fingers, and grilled chicken with mashed potatoes and I had another good day.

The only thing I have noticed is headaches, and muscle aches. But I have been doing pilates lately.

I'm really trying to get a hold of my diet, but its hard to eat for two people, especially when one has diet requirements. Its just expensive and wasteful to make two dinners for two different people. I have cut out all soda completely and I'm drinking water, pink lemonade, OJ, and raspberry flavored water. I also have cut out my coffee... just mostly because its too hot out to drink it. I've had pretty solid BMs... they aren't formed, but they aren't watery either... just little solid pieces. (I know you guys love this GREAT IN DEPTH detail).

So to sum it all up... I'm still inconclusive, but I plan on being this way for a couple more months. I went to fill my second bottle of LDN, and instead of getting it from The Compounder in Illinois, I went to a local compounding pharmacy in town here and they are going to make it for me with an acidophilus filler for MUCH MUCH cheaper than The Compounder. I got my first bottle for 74 bucks and I'm getting this second one for 40-50 bucks. Needless to say I'm pretty happy about that.

I'm still only on the 4.5mg of LDN and 325mg of ferrous sulfate(Iron) and the Vitamin C pill. I just had a CBC completed Friday, so I will get those results this week.

So anyhow... no good news, no bad news... no news at all really :)
 
great to hear how well you're doing Katiesue - keep it up :) and thanks for keeping us posted.. all this feedback is so important for anyone considering this kind of treatment (even the in-depth details lol)
 
Well, we each must plot our own course thru life. I never expected diet to have an instant effect on my battle, nor did I expect instant results from the LDN.. I figured it would allow my body to heal slowly, and sticking to a diet would also slowly give me the best chance of getting the results I 'NEEDED'.

Now, in cooking for my family, I never offered a menu. I didn't run a full service kitchen.. Folks ate what I prepared else they were 'big N ugly' nuff to fend for themselves... Odd that when it came to a choice of eating my cooking or cooking for themselves that they always ate what I made with no complaints... Just a thought.. and having to follow a crohnie diet may give those onlookers (pardon the pun) a 'taste' of what we put up with.
 
UPDATE! :)

I got my results back from my latest blood test... my hemoglobin is 12.8... or 12.3 I can't remember exactly what she said (ref. range 12-14). But I'm not anemic anymore... I still have to stay on the iron though. I told the nurse that I was still pretty tired lately and to check my B12 levels, so that's what she's doing.

I have a weird question... if I'm not anemic does that also mean I'm not bleeding on the inside at all? I feel dumb for not knowing this... but my mom asked me that question today and I had no idea.

Another happy story for today is that I went and picked up my prescription at my local compounding pharmacy and it was only $44... THATS what I like! HA I kept hearing everyone say "yeah LDN is a little over a dollar a day"... and I bought mine for 74 dollars... which is around 2.40 a day... $44 dollars is more like it!

Hopefully this newer bottle will fix even more since its filled with acidophilus... ????
 
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You are not loopy.. its a probiotic. And it is really good at warding off yeast type outbreaks. And, Katiesue.. are you getting your pills in 30 day lots, or larger? Reason I ask is that, when my GI put me on it, she gave me an 84 day supply.. (12 weeks @ 7 days.. like the original trial) for which I paid $90 But the gi who filled in for her on maternity leave insisted on monthy refills.. so I paid $50 for 30 days supply.. My point is that if you can convince your doc to do it after the initial trial period, to go with a 3 month or longer refill... then the price should drop way, way down, okay?
 
Yeah, I'd echo the sentiment, Pen. Like, I'm becoming a stronger n stronger proponent of LDN, but calling it a cure (at this stage) is like saying Insulin is a cure for diabetes. It's a treatment, but only a treatment.. and the disease can flare up.. tho mine have been very, very rare, and extremely mild. They seemed to take care of themselves.. I simply thank god N this site I found it.
 
Good to hear you're still doing well Kev and I hope it works for you Katiesue. I'm going to let Humira have its run, and whenever the time comes, I'll try LDN before going to Remicade.
 

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