# LDN and me, a personal diary



## Kev (Nov 28, 2007)

OK, here we go again.  Let's hope this one is the charm.  I've just started Day1 of a 14 week trial of LDN (low dose naltrexone) prescribed by my GI. 
The results?  No eureka so far, but then again, it is only day1. I took 4.5 mg of naltrexone compounded for me by a local pharmacy (hurray for Nova Scotia) last nite (apparently the best time is sometime between 9PM - 2AM, why? I dunno... but then again, I really don't care - as long as it works, right?).  As noted above, no immediate benefits...  As for adverse effects (or is that affects?  does it really matter?) I should/could expect vivid dreams AND/OR sleep disruptions.  No sleep disruptions... I slept like a baby for 7 hrs+
As for vivid dreams, well I had a vivid dream... meaning that the dream had lots of vivid details. dreamt (dreamed?) that I was on vacation on an island in the Caribean...  details ranged from the etchings on the drink glasses in the bar to the ladies sunning around the swimming pool.  Believe me, if that is the extent of the 'worst' of the potential side effects of this drug, give me MORE!!  God, I wish I had a photographic memory.  I'd have some of the photos enlarged to 2' X 4' and framed over my rec room downstairs. all I can say is that I woke up this morning feeling emotionally well rested..... as for the physical well rested part, that too.. but I don't know if that's just a part of the best sleep, nicest dreams I've had in ages, or some sort of... welllllll... placebo effect, or an emotional high from finally starting a drug I've been working on getting for the last few months.  Only time will tell...


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## D Bergy (Nov 28, 2007)

Good Luck Kev.  

I will be following this closely since I am having so much difficulty getting my own prescription.

I like the dream part, or maybe it is just the subject matter.  I assumed the dream thing meant nightmares for some reason.

With all of your experience with medications, I think you will be as objective as is possible.  I look forward to your comments.

Dan Bergman


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## D Bergy (Nov 28, 2007)

Yipee,

I finally got my records transferred and an telephone consult appointment in early December.  Hopefully, I will get a prescription shortly afterwards.

I am finally getting somewhere.  

Dan Bergman


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## Sojourn (Nov 28, 2007)

Good luck, hope it does work well for you.  I haven't seen Zoe post lately so don't know how it worked out for her.  But her symptoms were so mild that it would be hard to tell anything for the rest of us.  With your situation, you should be able to know if it's doing anything.

My doctor wasn't interested in it, so I may go the overseas route and take in addition to 6mp or Remicade.


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## Kev (Nov 28, 2007)

Yeah, Dan.. I assumed nitemares as well. Half expected that when I closed my eyes last nite.  just the opposite...  extremely detailed, vivid 'nice' dreams with nothing in my personal experience to associate it with.  During my travels I never stayed anyplace that looked like that, nor met/saw any familiar faces (or other parts of the anatomy)...  I'm sooo looking forward to my next dream


And, hey sojourn, sorry your doctor was less than enthusiastic ... BUT, that could be due to your current drug regimen.  I may be totally wrong, but I think you have to be completely off all immuno modulators for weeks, preferably months, to try LDN.  I took a big gamble here, weaned of pred and stayed off it (even tho I declined so quick) and avoided/declined any metho...  and it may take 6 - 12 weeks for things to turn around for me (if they do)..  I don't want to think of what state I may windup in IF this risk doesn't pay off.  Essentially 20 weeks or so of decline without meds that work..   Anyway, someone on here correct or substantiate my take on LDN. Pretty sure you can't go LDN while taking immuno suppressors, it would be totally contradictory.


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## D Bergy (Nov 28, 2007)

I think you are correct.  The two drugs would be working against each other.

Sojourn, If you would like to go the doctor route, give this doctor a try (link below).

http://www.contemporarymedicine.net/cv_ayre.htm

He is the one I am working with.  You have to send him your medical records and do a telephone consult before he will prescribe, but at least you have a doctor to talk to if you have questions.  I believe he takes LDN himself.  Not sure for what disease.  Just noticed, he had most of his education in Canada.  Can't beat that.

My symptoms are virtually non-existent right now.  I have hardly anything to monitor.  I am mainly trying to prevent future strictures and use the best method possible to treat.  I have many backup treatments, if this does not do the job.

I hate to put it this way but because Kev has had so much trouble with his Crohn's, I am actually more interested with his experience than my own.

I know he is somewhat skeptical which makes him the perfect test case. 

Dan Bergman


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## Kev (Nov 29, 2007)

Yeah, how did I end up being the guinea pig?  And, yes, ladies, I know that since I'm male I was half way there already.  Anyway, day 2. Last nites sleep wasn't as sound as Day 1, but that's mostly due to my having to get up at an ungodly hour to go work.  Have to pay for those LDN pills someway. BTW, if I neglected to mention it before, the cost of my pills equates to a $1 a pill/day. I know in a perfect world financial consideration should be the least important, but in this less than perfect world, one really has to be able to afford the treatment... and this treatment won't break you.   Anyway, so a less sound sleep (mostly worry about oversleeping), and... 'vivid' dreams.  Had another last nite.  Unfortunately, not the 'lurid' type of nite one...  just a dream about WW II espionage loaded with many details...  far too many to really remember AFTER the alarm went off. Worst part was that the alarm interrupted the dream, so I don't know who won. If you know, please keep it to yourself, as I hope to pick up where I left off tonite, and don't want anyone spoiling the surprise. Anyway, dreams aside for the moment, still no big eureka.  But, I have noticed a slight decline in my pain levels.  Too early to tell if it's related to the LDN, as it may be just a temporary upturn.  Coincidence?  I dunno.  Without becoming too graphic, my BM scale of wellness is right where it was 2 days ago. Pretty bad.. but very inconsistent.  Like, on any given day of the last 4 - 6 wks, I may be bad on Day A, little better on Day B, worse on Day C than Day A, better on Day D than Day B, yet worst of all on Day E. Freakin frustrating!!! Turn around the next day, and its better than the previous 5. Very difficult to plan for anything... And keep in mind that my diet/meds/routine are rock solid..  just my BM's aren't.  Ooops (or should that be poops?) I promised not to get graphic.  Anyway, fingers crossed. I hope the pain levels keep decreasing, and my BM scale at least shows some sign of improvement too.


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## Sojourn (Nov 29, 2007)

I guess I will have to wait awhile since I'm since still on 20mg of prednisone, but thanks for the link Dan.  I could at least get the ball rolling.

Kev, I don't know what happens at the end of your dream but reminded me of a new DVD that came out that is one the best contemporary WWII espionage stories that I've listened to.  Before it was a made a movie, I listened to the entire unabridged version on audio CD, about 20 CD's.  This year the tv station , TNT, made it into a three-night movie special.  Of course, the movie didn't do the book justice but it was fairly good.  It's called, "The Company."


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## Kev (Nov 29, 2007)

Hey Sojourn, the LDN website gave me contact info on a US doctor who prescribes long distance too (just in case I couldn't find a Canadian doctor).. Well, I contacted his office via e-mail, and the upshot was that for a $450 US fee, he would prescribe. Anyway, I dunno if you have health insurance or not.  If that link doesn't do the trick, let me know, OK?

Have you ever heard/read/watched  "A man called Intrepid"?  Seems the real Bond, at least his real counterpart during WW II, was a Canadian. Why?  Churchill wanted someone who could be trusted explicitly, without any ties/connections to the 'Old Boys Club' , or the monarchy, etc., etc..
so that's how a Canadian import to Britain became head of counter espionage, and later was fundamental (he maintained an office in New York before the US entered the war) in helping the US establish the CIA. And on another espionage related story...  in Canada, during the war, and post war, there was some animosity between English Canada and French Canada, based on the misguided assumption/perception that French Canada was reluctant to participate..  However, more than fifty years post V Day, the story leaks (finally) that the leader/liasson between the 'French' resistance and Allied counter intelligence was a French Canadian volunteer who parachuted in at the start.  His story, his bravery, even his name, was kept secret for 5 decades after the war ended... and even then, only came to light as an accident...  He was never officially recognized for his actions. Course, CIA still does that... agents that die get a star, but no recognition.


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## Sojourn (Nov 29, 2007)

I have not heard of that one, but will check it out.  I should have said "Cold War" about The Company.  It deals more with the aftermath of WWII and the Soviet Republics.

I also saw a movie about a Canadian diplomat in the Russian embassy who was working as a spy but can't remember the details.  I think it was based on a true story.


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## Kev (Nov 30, 2007)

Hmmm, sort of got a little side-tracked there.  Back to the LDN. Day 3 and as is well.  Still no miracles in the bathroom...   but no side effects or allergies either (Did I say that out loud? I'm sure to jinx myself).  Anyway, I've noticed a little something.. again, this could be a coincidence, it could be placebo, but it definitely feels like something...  I have suffered for years from some form of dandruff, and dry patchy skin... legs and ankles are the worst, and always worst this time of year.  last few weeks it has been a nightmare... have to apply ton of cremes and lotions to stop itch so I can get to sleep..  now, I know excema and similar are immune system malfunctions...  Last nite, for whatever reason, my itch just didn't appear. I also noticed again today my level of pain is ever so slightly better. Hmmm.


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## D Bergy (Nov 30, 2007)

So far so good.  I would expect a very slow effect, but it is good that you are having any effect at all.  That is a very good sign.  

Skin problems and Crohn's go hand in hand.  I still have my Psoriasis in spite of all of the various things I have tried.  I think it means that my Crohn's is still there although quiet at this time.  I feel if the Psoriasis goes then I can say the Crohn's is truly in remission.

I think your skin improvement, if it continues, is a good barometer of what is going on in the inside.  Just my personal hypothesis, with nothing to back it up.

Dan Bergman


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## Kev (Nov 30, 2007)

Well, the prospect that this treatment could, as a side benefit, improve my skin condition, is a very pleasant one.  One problem I hadn't contemplated is the pain from keeping my fingers crossed.


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## Kev (Dec 1, 2007)

LDN Day 4...  OK, still no eurekas in my big symptoms.. those continue to slowly deteriorate, just like they have for the past 6 - 7 weeks post pred.  As for my vivid dream side effects, that seems to have resolved itself. No more of those nice lurid ones, and none full of details that I can recall next day vividly.
BUT...  I had another fantastic nights sleep.. I slept for practically 10 1/2 hrs..  And, for the second night in a row, I didn't suffer from that darned itch that has been my constant nightly companion for I don't know how long...  AND, something that has me simply slack jawed amazed happened.
Months ago, after 2 weeks on imuran at 50mg, I ramped up to 100mg and had a bad reaction.  Incredible joint pain, and my body covered in a rash. I went off the imuran, and the pain went away within 2 days (thankfully). I'd ended up in the ER, where the docs suspected the imuran, and speculated the rash was some bizarre form of 'foliculitis; (sp?).. inflamation of hair folicules (sp?)..  Anyway, for whatever reason, the rash stayed with me, it never went away...  I just put it off as one of those things, a price I'd have to pay for taking some pretty potent drugs, and figured no swim trunks or shorts next summer...  Didn't want people thinking I had a contagious 'pox'.
My point?  Well, overnight, for whatever reason, my rash completely went away.  not a sign of it.  I didn't even realize it was not there anymore until my last trip to the toilet.  It was all still there yesterday.  I don't know what it means...  I can't swear to it being due to the LDN, but I haven't had any treatments, medications, etc., for it. I've made no changes in diet or anything else...  The only differences in my life has been coming off pred  7 weeks ago, and starting the LDN this past Tuesday nite. Go figure.


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## D Bergy (Dec 1, 2007)

Do you think part of your itching was due to the rash?  Or has the itching always been the same prior to taking the Imuran and the rash?

It must be nice to have some positive side effects for a change.

Dan Bergman


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## Kev (Dec 1, 2007)

Well, I've always had dry skin that became an issue in the colder, drier air of winter.  But the itch from that was moderate and occasional.  The rash came out of nowhere 5 months ago, and had no itch associated with it.. and altho it was on my legs, it was also on my back.  The itch, which is nitely, started as I came off the pred this last time...  Anyway, your guess is as good as mine. I dunno if the itch is associated with crohns, or is some sort of pre-cursor, or results from another, unrelated immunological disorder.  At this point, you know what they say about not looking gift horses in the rectum


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## Kev (Dec 2, 2007)

LDN, Day 5.  WARNING! GROSS STUFF TO FOLLOW.  Using my own BM scale of health, I'd either say I'm getting worse OR the LDN is working, resulting in some negative BM aspects.  Frequency has increased, and it's pretty watery. I had one of those sudden, middle of the night urges last nite, but fortunately I was able to make it to the W/C.  So, I don't know if this is simply my IBD on it's slow natural downward spiral, or a reaction to the LDN alowing my body to start ass kicking the IBD.  Other than that, I feel great.
My pain levels are definitely dropping, my energy levels are def. increasing (though that could be due to getting better sleep).  My diet remains the same...  (too early to take any foolish chances, and I don't want to cloud the issue).  as for side effects, nothing at all.. no vivid dreams, NIL, NADA!
As for the skin issue, the itch is still in limbo.. and the rash is still all gone.


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## D Bergy (Dec 2, 2007)

Anything that kills off a great deal of bacteria, either in your intestinal tract or even in your body can produce some nasty D.  I have had this purging reaction before.  The same reaction the flu produces.

The problem being that it is also is a Crohn's symptom.  I do not know how to tell one from the other except that if it is from bacterial die off it will stop rather quickly once the system is cleared out.

Could be either one.  I hope it is the bacterial die off, because it would mean your immune system is finally doing the right thing.

So the old saying "it will get worse before it gets better" may apply.

Very interesting.

Dan Bergman


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## AbstractDonut (Dec 2, 2007)

I don't think I've had any sleeping trouble either.  I haven't noticed any side effects really at all personally.  Of course for all I know the stuff they gave me is sugar and baking soda.

I have noticed sometimes a tingling sensation in my side, or a warmth in the other side.  Normally I just have a spot which is sensitive to touch on my right side two fingertips width from my hip bone.

Actually when I first started taking it I noticed instead of just hurting when I touched it or bent over to far it started feeling like someone was jabbing that spot every few seconds.  And this would happen a few times through out the day.  Then as I continued I would feel the same thing except on the other side.  Which is really odd.

Though on the other side it would seem such a whisper of pain I was afraid I was imagining it.  Anyway I am often afraid I might be over analyzing what I feel or imagining it.


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## Kev (Dec 2, 2007)

Yeah. I know exactly what you mean. AD  I was expecting something similar to the reaction I got when I started on pred.  It was immediate N undeniable. The stuff I'm feeling on the LDN is soooo subtle...  (except for my itch N rash going away - but is that the LDN, or just some big freakin coincidence). Part of me is hoping tooo much that the LDN will work for me.


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## Kev (Dec 3, 2007)

LDN and me, Day 6  OK, need some feedback from the deep thinkers on here. I don't know if this qualifies as a 'eureka', or not.  I went to bed last nite, and was all set to call it a nite, when I had a revelation of sorts. The entire day had passed, and I realized that I hadn't had a single pain. Not one. Allllll DAY!
This is the first 'pain free' day that I can recall (except for my post op hiatus) since like.... November of 04.  Anyway, that realization took me just a little off guard. Actually, I became extremely emotional.. wept like a baby. Not sure if it was so much that I almost missed it... or if the thought that there may actually be light at the end of the tunnel overwhelmed me.
Anyway, here's what I want the deep thinkers to mull over, and get back to me on.  I know that placebo effect actually works on people.. not that I am on placebos..  But this little 'eureka' makes me wonder. Is it too soon to be the real thing?  Does a person who appreciates the placebo effect have the power thru 'wishfull thinking' to wish themselves well, even temporarily?
Anyway, that's whats running thru this hodgepodge I call a 'mind'. On one hand I'm overjoyed that it seems to be working; on the other so terrified it might be another 'false hope'.  Been told twice in past that I was 'cured'. It wouldn't exactly be 'third times the charm' if this turned out to be wrong.

Few last things.. the BM scale is improving... at least it's back to where it was just before I started on LDN.  And my energy levels and memory are noticeably improved too... but I'm not sure if that's the LDN, or the last of the pred has finally worked it's way out of my system.  Who's to say, right?


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## D Bergy (Dec 3, 2007)

I am not a deep thinker, but I am a constant thinker that tries to figure things out using common sense and logic.

Time will tell whether it is a placebo effect or not.  Either way you are pain free for now so enjoy it.

I would apply "Occam's Razor" to your situation.  The principle of Occam's Razor states roughly that if you have two competing theories regarding a particular situation, precedence should be given to the simplest theory.   It would be hard to argue, in your case, that there is a simpler answer to the question "why do I feel better" than, you feel better because you are better.  And, if you are better than the simplest explanation is because the LDN is working.

If you heard hoof beats outside your house, would you assume it was horses or zebras?  The simpler answer is horses, and you will be right most of the time by guessing horses.  Not a fool proof way of thinking, but it will be correct most of the time.

People that have tried many drugs or treatments are not as susceptible to the Placebo effect in my experience.  Since you have had many that did not work I would guess your expectations were not the same as someone who is taking a particular treatment for the very first time without experience taking other medications.  You also noticed the improvement by accident.  Just like the skin itching, and rash disappearance.  Multiple Placebo effects?  I doubt it.

Since you may have some latent effect from the Prednisone, it still may be too early to know for sure if the LDN alone will hold your improvement, but I would think that being Prednisone is an immune suppressant would only negatively impact the LDN.  But who knows for sure.  

In a few months you will have more answers, as no placebo effect lasts very long, and you will be clean of any other drugs.  Your chemical balance is also being changed and probably will take awhile to stabilize.  Possibly, this is why this was such an emotional experience. Although if I was in pain for several years and it was gone one day, it would be like a miracle and would certainly evoke some kind of emotional reaction.  *And really, it is a miracle*.

I am very happy about your continuing improvement.  For your sake, and for everyone who suffers with this disease.  Thank you for taking the time to keep us informed on your experience with this important drug.

Dan Bergman


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## Jvstin (Dec 4, 2007)

I'm shooting a bit off track here, but just for a moment.
I developed Psoriasis a few years back, and after about 6 months or so it just vanished. it vanished when I stopped taking Pentasa.
just though I would throw that in there. there havent been ANY signs of it returning at all.


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## Kev (Dec 4, 2007)

Well, jvstin..  I don't know diddly about psoriasis (hey, I can't even spell it).. But I believe I very faintly recall hearing it was auto immune related somehow.
Not sure of that, but sure that someone will pop in to confirm/deny that. If it is, then any immuno suppressing drugs should alleviate it, and whilst on them, you should notice considerable improvement (like steriods/pred did to mine).  So, if u r on steroids, that may explain why it went away N stayed away...  As for pentasa (or any of the other 5ASA products) they are just good old aspirin..  But that means it is an acid (acetasalasylic acid) (sp?)..
Just wondering if all of that acid would be enuff to affects one's PH level. I haven't a clue whether it would or not... and even if it did, would PH levels too far on the acidic side affect one's skin.  As a kid, I ate way too many oranges...  would end up with mouth ulcers... it would even turn the gold in watches, rings, etc., 'green'.. And not just cheap gold, the good stuff too. I cut back on my orange intake, and the ulcers and the green gold crap all went away.  OK, its a stretch, and 5ASA may have no effect on the skin...

While I'm here...Day 7  No sign from on high (or down low, to be precise) to show me that there's any miracles in the offing.  I had some pain yesterday, but way, way less than usual. Maybe the other day was just a fluke..  Maybe this is all just another of those unpredictable IBD upturns. I don't know.  The BM scale is 'usual'...  not as bad as the episode where I had to warn you about...  but nowhere near as good as when I was on pred.  Just more of the same old, same old.  So, another day with no big 'eureka!' in it, and another day with absolutely no adverse effects either!


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## Nancy Lee (Dec 4, 2007)

Kev, it is so good to hear how well you are doing...even if it it not a big eureka, but less pain, more energy etc., sounds fantastic to me.

I didn't know you were going to try this LDN (low dose naltrexone).
In fact I am SO out of the loop that I had not heard of this treatment, at least that I know of.

Since we are both in Canada and my doctor is contemplating putting me on Imuran....maybe I could go this route?

I am very much interested in just what this drug is, how long it's been around etc.

Anyway Kev....I will keep watching for your posts and find out more myself about this drug.


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## D Bergy (Dec 4, 2007)

I had my first appearance of Psoriasis about one year after my first Crohn's episode.  It has never gone away, although it gets better and worse seemingly randomly.

I will receive my LDN in the next couple of days, barring any more dumb delays.

It will be interesting to see if the Psoriasis goes away with LDN treatment.  Nothing else I have tried has made any significant difference.  I doubt I could Placebo it away or I would have already done it.

I do not know for sure what causes the skin stuff specifically.  I am sure it is connected to the Crohn's and is auto-immune in nature.  

Someone feel free to offer a contrary opinion on this, but I really cannot think of a good reason not to try LDN before any immune suppressants, unless you need immediate results.  My gastro doctor would not prescribe it, but he would not offer any logical reason why, other than it is not as well tested as some other medications.  That may make some sense if it there were potential  unknown side effects, but there is not. The side effects are so trivial you cannot even compare it to most drugs.  It is either going to work or not, just as any other medication.

The doctor that prescribed my LDN told me that when doctors are in school, they are not encouraged to try anything outside what others are doing.  Conformity is encouraged and innovation is discouraged.  I really do not see how any progress can take place in this environment.  Conformity at the expense of the patient is not what most people are bargaining for.

Luckily, some will use their good sense and buck the system occasionally.  I never liked the system much anyway.

I hope you continue to improve Kev.  I think you will need the perspective of months before you will be able to come to any hard conclusions.  In the meantime, enjoy the benefit of less pain.  

D Bergy


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## D Bergy (Dec 4, 2007)

I forgot to post these links Nancy Lee.  It is worth the investigation, given the results many have had for various diseases.

http://www.lowdosenaltrexone.org/

http://ldn.proboards3.com/index.cgi

http://health.groups.yahoo.com/group/lowdosenaltrexone/

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

You have a lot of catching up to do!

Happy reading.

Dan Bergman


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## Kev (Dec 4, 2007)

Yeah, Nancy Lee, you must have been taking a little beauty nap or something.

Good luck with convincing a doctor to off label prescribe. took me 3 months to convince my doc to go out on a limb.  As Dan mentioned, it is outside of their (dr's) comfort level...  I mean, the whole old Hippocratic oath thing about  "Above all else, do no harm".  And the med schools go their route to try to weed out anyone willing to gamble with patients lives, shoot from the hip, that sort of thing..  There is something to be said about the security of the good old tried and true.  I had tried a lot, would probably have stayed on imuran except for the nasty old reaction thingy, when I found myself left with a very short list of rather nasty looking alternatives.  Remicade just is out of my price range... Humira probably isnt' cheap either.. and the whole methotrexate thing...  like according to its own statistics, getting 2 yrs out of it is a real long shot, and the potential side affects, added risk factors. I just didn't like the feel of it.  As for the LDN, it isn't exactly risk free either. Just not the risks one typically thinks of.  Side effects are either laughably low or totally non-existent.. Typcial dosage for addiction treatment is 3 x 50 mg a day... they tested it way back when for addiction at 300 mg/day. I mean, c'mon... sleep disruptions or vivid dreams.  Oh, mama, I am scared! Ok, what do I mean by risk factors?  Took me a while to find a really good GI...  and literally, I'm grateful that I found her, and that she was willing to go out on a limb for me.  But, suppose she agreed with her peers. Then how do I go forward... find myself a bad GI who doesn't care what I do? Or my insistence on trying totally (well almost totally - 17 patients tested) un-tested, un-proven meds..  gets me put on the list of problem patients. I have seen this doc bend her schedule into pretzels to fit me in at times, and on maternity leave, fought to get me seen both by another good GI and on the G I clinic roster...  considering the doctor shortage here, theres a real miracle.  And as for any doctor doing this, going out on a limb, theres a real consideration.  Docs on the whole are a pretty conservative group, bred if not born to it.... specialists depend on referrals in our health system from their GP peers.  Imagine the effect on their practice if word filters out that 'they' are risk takers, gamblers, taking a chance on a study that only was done on 17 patients.  Like, Humira wasn't approved in this province for the treatment of IBD until sept of THIS year! Despite the fact that we have the market cornered on IBD.  So, it takes (rightly/wrongly/just plain does) a LOT of convincing of the 'right' kind of doc to get this prescribed legally. If you are lucky, you might run into a doc who doesn't care what drugs you go on, just as long as you don't sue.  Like, if it kills you, just die quietly, OK

I was determined to try this first.  I was prepared to jeopardize my doctor - patient relationship, even if I lost her as my GI (that would have been bad), and I'm willing to play guinea pig with myself... literally come off all other of the 'known' drugs (5 ASA aside) for weeks, try this for the next 14 weeks, and hope for the best.  If it doesn't work, then I'll have wasted 20 + weeks of traditional therapy, plus however long it takes for my next 'traditional' treatment to kick in and work, and in the meantime, my IBD has a treatment holiday..  Like, going LDN is not a 'no brainer', you really need to take into consideration all of the potential plusses and minuses, and decide. I firmly believe that I made the right choice for me, but I thought it all thru first.  And, my short list of options was shorter than someone elses may be.
OK, here endeth todays sermon.  please pass the collection plate


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## saidinstouch (Dec 5, 2007)

Kev, actually Humira compared to remicade is a drop in the bucket.  I pay $50 a month because it is supplied through pharmacies and you have no expense to pay the infusion center/hospital where most of the cost comes.  This is the same price you would pay for pentasa and canasa as I've had experience with them (and I was paying $50 a month for pentasa at 1/4 of the normal dose because of a retarded GI thinking my crohns causing fissures and a fistula was only a minor case as indicated by colonoscopy and blood test).  However I am glad you are giving the LDN a try because people like you taking a risk helps young people like me.

If the LDN doesn't work, I would seriously consider the Humira, I've been on it for almost 3 months now and I like it more than the remicade.  Once I was able to rule out Humira as the cause of my headaches, I've determined that on a daily basis I feel better than I did on remicade.  It takes 10-20 minutes of my time twice a month and only hurts for 5-10 seconds during the injection itself.  Good luck with the LDN because as you've said the other options aren't a walk in the park and even the Humira runs the risk of infection and (highly unlikely chance of lymphoma).  The good news is it will kick in within a couple weeks of the buildup doses and the first day is the hardest since you give yourself 4 injections.

Reading your posts is refreshing to see someone taking a chance and pushing the limits to get themselves better.  Also I agree, having a great GI doctor makes having Crohns disease 100x easier because I know I can get help when I need it from someone willing to treat my symptoms rather than what tests say I have.


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## Kev (Dec 5, 2007)

Thanks for the info saidinstouch.  But are any of your costs covered by private insurance?  And do you live in Canada?  The reason I ask is that coverage of some things here is pretty hit or miss.  Like, if I go to my GP for a shot, I don't pay for the syringes, alcohol, etc., just the meds... but if I go to a clinic, then all of that is billable.  go figure.  anyway, judging by the very early results, it looks like I won't have to worry about crossing the humira bridge, or any other, just yet.  It looks like the LDN is definitely doing it's thing. Or something.  Another big improvement that almost snuck by me... literally, someone else noticed it before I did.. and the improvement is something I never experienced before, even while on pred. My body temp is 'regular/normal' again.  I (pre-illness) was not bothered by the cold... actually preferred it. I'd go around in short sleeved shirt on some of the coldest days.  however, since becoming ill, my sense of temperature just went wacky... one minute I'd be freezing/shivering, the next in a sweat that made no sense at all.  hot N cold flashes that made me miserable, and gave those close to me opportunity to tease me about going thru the male change of life.  Well, sometime within the past few days, that went away. I didn't even notice it's passing, as I'd become so accustomed to having it. It is something I've had constantly, no matter what other meds I was taking. 

So, it's still no 'eureka', but it's definitely another, undeniable sign that LDN is having a positive effect on my overall condition, just on a day by day sort of pace.  I've heard/been told that other meds take a while to do their thing, so I'm totally copacetic with giving the LDN all the time it needs. and, speaking of day to day, I'm going to disappear for a few days due to work. so, don't anyone panic..  it's not like i'm unconscious on the floor due to an LDN overdose or anything. I'll touch base when I get back into town.


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## saidinstouch (Dec 5, 2007)

Hmm, yeah I am in the US with united health as my provider (the only bad part of my humira switch is with its recent approval their system for prior authorization took me 20+ hours on the phone).  I am glad you don't have to cross the Humira bridge and have found something that seems to be working.  I too have actually experienced foliculitis on my legs, though I attribute that to my suppressed immune system and being a college student.   Surprisingly, I too used to prefer cold and now I simply can't stand it, though I think when I'm on meds, I deal with weather better.


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## D Bergy (Dec 6, 2007)

Just got my LDN in the mail today.  Will be taking it tonight.  I hope I can have Kev's dream now.  Mine are too boring.

Dan Bergman


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## Kev (Dec 7, 2007)

LDN and me...  OK, so I missed a few days. Duty called me out of town, so off I went. Big mistake.  As much as I want to continue to work, my body just isn't in the condition it needs to be in right now to travel and eat off menus. I knew I was in bad shape before I went, just too old, stubborn and proud to admit it, and tell my company to give this case to another investigator. Live and learn.  I've continued taking my LDN and Salofalk, but my eating habits brought about by being on the road has really impacted me.  My BM scale was just starting to show early signs of improvement. Now it has rolled back, and my pain levels have definitely gone up. I don't think the LDN is at fault... I take the full blame for any setbacks I just had.
I just hope, that having come to my senses, I haven't done any permament harm.  So, no 'eurekas', but, considering the circumstances, I have no right to expect any.  On a positive note, aside from the BM scale declines, none of the improvements I've previously noted have deteriorated. That stuff is all good.  I was just wishing I'd have some good news on the BM scales to convince my GI to refill my LDN.  I've gone thru 10% of my supply, and my next visit (and last till she returns from yet another maternity leave) is on Tuesday.  would have been easier to convince her with the 'typical' sign my colon is improved.  The others are nice, but the BM scale is a telltale sign.

Hey, Dan. congrats!  As for the dreams, enjoy them while they last. I only had a couple of nights of these vivid dreams, and only one was truly lurid.


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## AbstractDonut (Dec 8, 2007)

Wow they didn't give you much.  The place I ordered online from gave me 11x10 days worth, basically.  Each pill dilutes to become about 11 days, and  10 pills for about $40.  I am on my third pill.

Also I wouldn't worry too much about the slip up with the food, I have been off my diet ever since I started the LDN.  Even though many days I have felt just plain bad, these last few days I have been feeling better.  And thats with a glass of milk and 3 poptarts a day, so thats something.  Before this I was eating McDonalds chicken nuggets every day, and was slowly feeling better there too.


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## Kev (Dec 8, 2007)

Welll, the study covered a period of 12 weeks, with a follow up at 16 weeks. My GI, reluctant to wholeheartedly adopt/accept a study involving just 17 patients, agreed to 'trial' me on the drug for 12 weeks, just like in the study. That's why my prescription is for 84 x 4.5 pills.  1 a day for just 12 weeks. So, I am feeling a little 'pressure' for these pills to do something significant enough that my GI will consider extending my prescription. That being said, my understanding of the process is that the drug affects only the neurons in the brain, re-setting the flipped switch that causes a body to react the way it does to IBD in the G/I tract.  Your G/I tract is pretty much on it's own to slowly heal itself naturally, w/o the defective immune system making matters worse.  I've seen folks on the LDN website who've started on LDN, but then had to combine it with extremely strict diets and/or anti-biotics to treat factors such as candida, to get it to work for them.  So, my thinking is that I need to stick to my diet, behave myself, and hope that I'm in the majority for whom the LDN works in treating IBD. If it doesn't work (and I really don't want to go there), my next to last hope is to repeat the LDN at least once more, and get my doc to prescribe a/b's to treat me for candida (the chances of that are pretty slim, as the 'only' evidence/referral to it is the anecdotal stuff I've read on the LDN website). You know, to each their own.. live and let live has always been my motto. But, given the possibility that this stuff 'could' work, I think/feel that to eat like I've been accustomed to for the past 2 years or so for the next 12 - 24 weeks is a 'no-brainer'.  Another 6 months of sticking to my diet I can do on my head, especially if it will help my colon repair/heal itself via the LDN.

I also (and your situation is probably different) realize that I've been going downhill rapidly since coming off the pred... and that my condition before I came off pred wasn't that great to begin with.  In fact, it was so bad that I and my doc agreed something HAD to be done... either metho, or an op., or whatever.  It was my digging in my heels and insisting on the LDN which finally convinced my GI to go out on a limb and prescribe the LDN. If the LDN doesn't work (and I don't mean to sound pessimistic, just realistic) I'll probably be in far worse shape in 12 weeks time. Fortunately for me, there seems to be 'real' progress occurring, just on a steady, painfully slow basis with no big 'concrete' proof YET!.  Man, I would kill for a good looking BM before my next GI visit.  But, I have to accept and relay what really occurs


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## saidinstouch (Dec 8, 2007)

Well if it's as you say that your body has to heal itself, then you most likely won't have a big eureka until it already happened days before really when you realize little things (like the cold sensitivity and foliculitis) went away.  Seeing as I don't know what your diet entails, do you take any supplements to help your digestive tract.  Primarily the omega series and especially L-glutamine are supposed to be major helpers in the intestines department.  Also I've read about garlic supplements being beneficial.  There is also the option of a probiotic like vsl#3 or even florastor to help increase the good bacteria count in your intestines to assist in the healing process.  The last option isn't necessarily proven, but the first few options I know in my experience can and do make my intestines hurt a lot less.

Just a couple thoughts that might help you in speeding the healing process along.


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## Kev (Dec 8, 2007)

As for diet, i've talked about it so often it sounds like a broken record (here is where all the kids say to themselves 'Record, what the heck is a record?') But, i'm on a low fat, low fibre, low residue,low lactose, hi protein diet, with daily multi vitamins, pro-biotics, added vitamins A, C n D... plus yogurt regularly. I also try to avoid all processed sugars (white, brown, golden, etc) plus any of the sugar substitutes (including fructose based). I do substitute honey whenever possible, which is a form of sugar, just bees processing it into honey seems to make it palatable to my gastro-intestinal tract. I exist mainly on boiled skinless, boneless chicken (can you say yum). plus tuna canned in water, and boiled eggs, white bread and white rice. Its the blandest diet I think I could ever have imagined, but I tolerate it okay.


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## D Bergy (Dec 8, 2007)

I have never heard of anyone asking for a decent bowel movement for Christmas, but it can't hurt to send a letter to Santa.

Seriously, I hope you can heal fast and well enough to prove the LDN is working.  

I do think it is a very subtle effect, but that is likely better than a hammer type drug treatment in the long run.

I have taken two doses so far and got ripped off as far as dreams go.  No dreams at all that I can remember.  I did wake up at 3:00 A.M. after the first dose and never did sleep much after that.  One tired day at work.  I really do not know if it was caused by the LDN or not.  I have had this happen on rare occasions before, and since I knew that was a possible side effect, it could have been a placebo thing.  I slept fine the next night, since I was so tired.

No effects that I can hang my hat on so far.  But, I really have nothing to resolve at this time so I will just have to assume it is doing something.  I am hoping it will get rid of my Psoriasis, but even this has been slowly going away even before I started.  If it continues to go away and is resolved completely I think I will be able to say it helped with that.  It usually will get better and then will reverse at some point.  I think the Psoriasis is an indication of my Crohn's activity since I only got it about a year after my Crohn's reared its ugly head.  Never had it before.

I have cut my Turmeric and Ginger use in half to 1,000 mg a day.  I take two capsules of Krill oil as I always have, mostly for dandruff and general health.
I am worried about reacquiring depression symptoms by cutting back on the Turmeric.  I am hoping the LDN may help in this area also.  I do not like Crohn's but I will take it over depression any day.  Hopefully I do not have to struggle with either.

A couple of weeks ago I took some more MMS or more accurately Chlorine Dioxide to kill a cold.  It worked, and I was almost a 100% after three days and quit taking it.

It came back, a couple of days later and induced the big D.  Turns out it was the flu.  I did not want to take any more Chlorine Dioxide since I had D, and I was back to normal in a few days with no more treatment.  Never had much for symptoms, but my parents had this and they both are just now getting better after getting Pneumonia along with it.  Over six weeks of illness and antibiotics.  That is why I did not want it to get a grip on me.  Lots of Pneumonia going around my neck of the woods.

My wife is taking the Chlorine Dioxide for Lyme disease and it is working real well so far.  Better than anything we have used so far.  We are hoping it will cure it, but it is a bastard to get rid of.  Time will tell.

Anyway, we have a lot of various treatments going on and we all are in good shape at the moment.  It is kind of weird, going from zero health problems to a family full of them in a five year span.  Kind of gives you a new perspective on life.  I still have two grown children that have auto immune diseases.  I am hoping they will get prescription LDN to help them out.  Not much LDN related experience available for their conditions, but I think there is a good chance it will help.  It should not make them worse, and no worries about side effects.

End of long winded update.

Dan Bergman


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## rhapsody86 (Dec 8, 2007)

i hope the LDN is working for you Kev! Good luck and i'll be following this thread.


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## Kev (Dec 9, 2007)

LDN and me.  OK, for the downside.  My BM scale is in the toilet (how's that for a play on words - it accurately describes the situation w/o going graphic).
Now, that can either be my situation from going off diet (tho I tried not to) due to working away from home (I don't know how Sojourn manages), else it may be an effect of the LDN ... got my immune system working kicking ass in my GI tract..  Who knows? I don't.  Think maybe I jinxed myself by giving voice to what I really wanted for Christmas (like a lot of folks, crap)
Anyway, for those keeping track, here's a synopsis of the positive effects:
my body temp is now regular/regulated, I'm more energetic/better rested, I lost my rash from the Imuran fiasco, my pain levels have literaly dropped off the chart. I've had 3 pain free days in the past 8, and on those days I've had pain, it was sporadic/intermittant in nature, and my unceasing leg itch has ceased.

What have been the negative aspects?  Well, monday marks Day 14 of my LDN treatment..  To date, I've had 4 vivid dreams, no sleep disruptions, and 2 cases/doses of extremely watery BM's.  That is the total adverse effects!

Now, bear in mind that it's been (holy crap, today's the 13th day! Now I am going get it - superstitious ol fart, don't ya know).. less than 2 weeks, so it is a bit premature to draw conclusions..  But the documented history of LDN seems to indicate that my experiences with it are completely typical. I just caution anyone reading this who is contemplating trying it that, in my own recent history... drug adverse reactions CAN sneak up on you at any time.  I went 2 weeks on Imuran with no problem... Week 3 was total hell.


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## Kev (Dec 10, 2007)

LDN and me, Day 14. Still no big eureka. However, I know the LDN is definitely doing something.  Something positive. and it's definitely not a placebo effect. How can I rule out placebo?  Simply because the effects I have felt were not any that I expected/anticipated.  I had one show up this morning that wasn't even on my radar.  Just like the others I've felt, it's something I just wouldn't have imagined. But more on that one later. I just want to describe the difference in me today versus just two weeks ago. Back then, I'd go to bed, suffering from the torment of my leg itch, and get to sleep when I could.  sleep for maybe 6 - 7 hours, wake up exhausted. It took me literally 2 - 3 hours after getting out of bed to feel at all human. I would commence my daily routine, a light lunch, wait an hour, take my meds.. then deal with nasty cramps/pains for the next 45 min to 1 1/2 hrs. Periodically, I'd be forced to take a nap, sometimes 15 min, sometime 1 hr. Not so much a planned nap, simply one of those where I couldn't keep my eyes open.  by afternoon, I'd start to feel some energy, be able to get up to doing something.. anything, just to feel useful.  Then the next med time would roll around.  Food, 1 hr wait, take meds, deal with the pain either from eating or taking the meds.. Then another nap would be forced on me.. That was my routine, food, meds, cramps, naps, repeat until bedtime. 

Here's what my life is like today..  Let's start in the morning. Get up, feel so completely rested/energetic that I literally feel like dancing. Eat something, wait 1 hr, take my meds...  no cramps, no pain, no naps! I have energy to burn.. At bedtime, I lay down, no viscious leg itch to deal with, no cramps to keep me up... sleep like a baby, sometimes with very detailed dreams. If this drug caused no further improvement (like the eurekas on the BM scale that I've been hoping/praying for) I would heartily recommend it to others. Mind you, I'll be extremely disappointed if this is as far as it does take me. But I've got to say that the improvements I've seen have been wonderful.

OK, the latest improvement/change that I alluded to earlier. it really came as a shock.  I haven't a clue as to what it's got to do with my condition, or the whole IBD thing. I didn't even realize that I had undergone this change. It's only pertinent to smokers, only smokers or ex-smokers will know what I'm talking about.  People who smoke know what the first cigarette of the day feels like...  theres' a head rush with the first light-up.  A really funny thing is that I'd lost that, didn't even know it was gone. Can't remember the last time I felt it.. definitely months ago, possibly years. somehow it just went away...  and with everything else that was going on, I didn't pick up on it.  Except for this morning. Lit up my first smoke of the day, and it all came flooding back.  At first I was so stunned, I didn't know what to make of it.  Then I recognized it for what it was, realized it had been gone, and wondered/pondered how it was connected to this whole disease thing. Haven't a clue..  But, it certainly indicates that my benefits aren't placebo.


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## D Bergy (Dec 10, 2007)

I am simply stunned at your before and after scenario.  It must really change your outlook, feeling that much better.  I would feel like dancing also.

I think you will get your BM improvement, but it will take awhile.  If your physiology in general is improving, the rest should follow.  Kind of like my stubborn Psoriasis.  

I will have to see if I get the smokers head rush.  I suppose it has something to do with the endorphin blocking characteristic of the drug.  

I was on the verge of being constipated today.  I rarely ever have that happen.
Not sure if it is LDN related or not, but it is strange.  No other effects of note.

Dan Bergman


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## D Bergy (Dec 10, 2007)

On second thought, I think the smoking head rush thing could be because of the efficient toxin removal by your body.   You sleep well and the repair, toxin elimination and all the other body processes become more effective.  

Hopefully the repair part will take care of intestinal damage also. 

It is just like starting smoking all over again.  Of course, this is just one of many possibilities.

Dan Bergman


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## Kev (Dec 10, 2007)

Well, the simply mind blowing aspect of it was... that I hadn't noticed this one part of my 'normal' life slip away.  Makes me wonder if there are other things I have lost that did so similarly.  I mean, it's not a big aspect of life, nothing to lose sleep over. Hey, if nothing more, I wonder if there are other smokers on here who experienced the same thing, or rather; didn't experience it, even tho it happened.  Maybe the effect of smoking on IBD is a wee bit more complex than just vaso constriction caused by the nicotine.


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## Sojourn (Dec 10, 2007)

Good to hear you're getting some positive action out of LDN.  The energy is a definite plus, but hope it does much more.


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## AbstractDonut (Dec 10, 2007)

I've been feeling much better these last few days, I ate a party pizza yesterday with 2 grams of fiber and it didn't cause any commotion what so ever.  Also I had a bit of coke at a movie and some ice cream cake, cause it was my birthday.

Anyway I do not have a BM scale I test how things are going by eating things that would normally cause me problems, like the pizza.  If 8 hours after eating something with fiber I still feel okay I think that is a definite improvement.  Today I am thinking of going to the store to get some fruity pebbles and maybe some breakfast egg pancake sandwiches.

And I don't think I started having dreams until I started reading about you having dreams, now I seem to remember them much more.  Though on the weird effect side of things, I do get a weird sensation about an hour after I take the LDN.  Since I stay up all night I normally read news or surf forums on the internet during the night.  Well normally if I am sitting still and not very active I get the sensation that I am swaying in the chair or that the chair is moving ever so slightly.  I know I am probably not describing that well but I have definitely felt it a few times an hour or two after I take the LDN.  Just like the motion of the ocean.


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## Kev (Dec 11, 2007)

Well, I don't know what gives with the dreams.  I've had 5 in 15 nights. so they aren't predictable...  and they aren't frightening (or at least haven't been to date).  just detailed, often complex, and (sigh) only occasionally 'lurid'. As far as adverse effects go, seems to me LDN users have really lucked out. The potential list of side effects that's been posted on other IBD drugs really puts it into perspective.  Talk about much ado about nothing.  Abstract, i'm wondering what schedule you're taking your LDN on? The recommended time is between 9 PM & 2 AM, but in your case, you are usually wide awake.  Those effects you noted may be due to this reversal of 'awake/dormant' times.  just a thought.  Do you have a set time when you normally sleep?  Perhaps adjust your med time to just before your sleep cycle. I'm assuming there's a motive/method behind the recommendation to take these between 9 PM and 2 AM. I wonder if anyone on the LDN website may have the scoop on this.  As for me, I want so desparately for the LDN to work, I refuse to let myself do anything to possibly jeopardize a best bet outcome.  I have contingency plans in place should this not work, but thats sort of my worst case scenario. I refuse to consider them until all hope that LDN is going to work is definitively ruled out, and it's taken off of the table.


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## Kev (Dec 12, 2007)

LDN and me, Day 16.  OK, saw my GI yesterday.  Presented a list of pros and cons (the cons were extremely short...  no improvement in the bathroom, and some dreams).  Told her of the incredible improvement in the quality of my life since starting on the LDN.  Then requested, with her imminent departure for a second maternity leave, she contact the pharmacy and order enuff refills to get me thru her absence. She declined! I couldn't believe it.  She maintained that the treatment is too experimental to provide open ended prescriptions. She wanted me monitored while on it, and prescriptions would be provided IF there were no serious consequences.  In order to accomplish this, she has contacted another GI who has agreed to take me on as an interim/transient patient, and advised him of our secret little experiment.  Not exactly what I wanted to hear, but as a compromise, I guess i'll have to accept it. I just know that if at some point, (without life jeopardizing complications) either my replacement GI or my current GI still refuse to provide LDN, that's the end of line as far as me seeing them.  But for now, that's a little premature to even contemplate.


OK, still no overnite cure!  But, there has been another change, and this is one I was expecting (actually praying for). My last trips to the bathroom 
have shown some improvement. On a scale of 1 - 10, these were definitely Number 2's.  What did I just say?  Seriously, my last 6 weeks or so, I would rate my status in there as 1's out of 10's.  Definitely some improvement. As to whether it's the LDN or not, too early to tell.  I have had modest gains in that department before, typically last a day, roll back the next, ahead again on the 3rd, back on the 4th, finally settle down to a dismal 1 and stay there.  Now, if this improvement stays, and continues, then I do have something to crow about.  OK, aside from that, and my morning head rush with my first smoke, no other improvements or good signs to brag about. Its nice that (skipping the BM scale for the moment) the improvements that I have noted are sticking around.  Have to keep that in perspective. its just hard to remain patient, and keep good thoughts, that it will continue to get better.  The roller coaster nature of this disease can make one pessimistic.


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## Shane (Dec 12, 2007)

It's great to read that you're seeing continued improvment with the ldn. I'm still going strong without the pred, one week after my 2nd Infliximab infusion.


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## Nancy Lee (Dec 12, 2007)

Hi Kev,
Glad to hear all the positive results from the LDN.  I see my gastro doc again in February and I'm going to ask what the chances are of me getting in on a trial run of this drug.

I can understand your GI's reluctance to give you an open ended prescription.  I imagine she would want you closely monitored for any negative symptoms...but we're not going to even think there will be.   

You will still have your pills and another GI while yours is away...that's a plus!

Keep us posted..I am very interested in hearing more.

*Happy belated birthday to AbstractDonut!*


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## Kev (Dec 12, 2007)

Well, without going overboard... jumping on the LDN bandwagon before there's been sufficient time and enough conclusive evidence for me to recommend it to others.  I have to say that the results I am currently experiencing are a toss-up.  I have seen increased energy levels before.. while on pred. I have seen my BM scale improve, either while on pred, or during brief and not so brief up swings in my condition.  I have very occasionally seen my pain levels decrease, post op...  and that didn't last very long. But I have not witnessed/experienced a combination of the above on any prior regimen or treatment.  And there have been other changes/improvements I have never experienced before.  Now, if it only continues, and stays on track. Anyone considering trying LDN, I could only wish you the same, and good luck. The risks involved are weaning off many traditional meds (and it may or may not be absolutely necessary - I can understand the patients in the initial study being weaned off to eliminate the possibility any benefits observed didn't stem from the LDN.  But I also believe - tho I may be wrong - that immuno suppressing therapy AND LDN therapy would work at cross purposes, they'd be counter-intuitive @ best, counter-productive @ worst)
Anyone, please feel free to jump in with contrary opinions/thoughts on this!


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## D Bergy (Dec 12, 2007)

I agree that the any immune suppressants would likely interfere with the action of the LDN.  

I would say that if you have a medication that is working for you then why switch to something else?  In Kev's case, he was running out of options, so it made sense to try out LDN.

If you are taking no medications, like myself, then the case for LDN is somewhat different.

The pros of LDN is it is one of the few medications that has no potential serious side effects at the doses we would take.

It actually should be protective from Cancer and Alzheimer's Disease, MS, etc. 

Given the way it works, I think it is unlikely that your body would ever get resistant to it.  I have not heard of this happening by anyone.

No withdrawal problems.

Cheap, Cheap, Cheap.


The cons are:

My insurance will not likely pay for the telephone consult or the LDN.

No extensive studies to prove beyond a shadow of a doubt that it works as advertised.

Physicians are reluctant to prescribe and may require you to find a prescribing physician.  Not a comfortable thing to do for most people.

If you are on an effective drug now, you risk losing those benefits and possibly worsen your condition while you switch to LDN as Kev pointed out.

The LDN may not give you substantial improvement.  Of course this applies to any other medication also.

That is my take on it.  One good thing is Kev is not going to bull**it us on his results.  We will have at least one good account of the effects, good or bad.

I just have too few symptoms to make a call on it.  So far I can not tell that I am taking anything.  And that is fine as long as I do not get any symptoms back.

Dan Bergman


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## Kev (Dec 12, 2007)

Open my big mouth, there is usually a consequence. After posting my update of today, I got hit with one of those '2 minute warning, get to the bathroom, get the clothes out of the way, and assume the position mission impossibles that IBD throws at us'.  No warning signs, no indicators that this was going to happen.  It even included those oh so nasty bouts of cramping that all to often accompany this sort of event. In anycase, I made it.  Course, afterwards, I felt totally drained (no pun intended). I had to lay down, nap, recuperate.  Back on my feet now, not feeling as great as I was before.  Just goes to show that a new drug, some improvements, do not a cure, or even a remission, necessarily make.  Guess I could call it a wake-up call, or a reality check.  Whatever the LDN is doing, pro or con, the IBD doesn't appear willing to just surrender without a fight, and even an occasional 'sneak attack', to keep me on my toes, or within minutes of a bathroom.  I'm just hoping that this is a random event, not any indication the tide is turning in the opposite direction. I would hate if this was just a plateau...  IBD has done that to me before.  To all of us on occasion. Well, barring a miracle, think this is my last post on the topic for this evening.


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## Kev (Dec 13, 2007)

OK, survived yesterday and last nite. For whatever reason, I got hit with total of 3 of those 'spontaneous' outbursts.  Damn!  Then, at bedtime, my cramping that I thought was a thing of the past came back.  After me bragging to you and my GI they were history.  Oddly enuff, my BM scale improved. Now 3 out of 10.  go figure.  Pains involved with the bathroom trips, but not otherwise. I don't have a clue what is going on. i woke up this morning feeling right as rain...  Sure didnt' like those episodes from yesterday.  Not sure if my body is getting healthy, and purging all the bad stuff from me.. OR if I'm going backwards.  Isn't this disease just a trip? As it stands, no pains EXCEPT for bathroom trips, that is as of yesterday, and cramping at night (but that was a forerunner of another episode at 2:15 AM).  So, I just plan to tuff it out, hope the BM scale continues to improve, and that my 'spontaneous episodes' slow, stop or go away altogether. It's very inconvenient to have this happen now.. christmas shopping/decorating to do, don't you know.  Imagine being in one of those checkout lines while having one of these episodes. I think not.  Makes the 'ho ho ho' of the xmas season more one of 'hold, hold, hold on' till i get to the public toilet.


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## Kev (Dec 13, 2007)

OK, another update (brief this time, for a change).  Another trip to bathroom, another improvement.  Now at 4 out of 10 on my personal BM scale. Why? No clue.  so far today, none of those spontaneous episodes that made yesterday a nightmare. (knock wood).  No pain associated with today's bathroom trip. Its a mystery.  Trying to remain optimistic and impartial all at the same time.


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## D Bergy (Dec 13, 2007)

I would guess you are going to be erratic until the transition is complete.  Your body has not worked normally for a long time and as you got your symptoms over time, they will need time to resolve also.  A lot going on apparently.

There is some old tome that says your symptoms will go away in reverse order in which you received them.  Seems to be true most of the time.  If you can remember in what order your symptoms came in, it would be interesting to see if it works that way in resolution.

Glad to hear about the improvement.

Dan Bergman


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## AbstractDonut (Dec 14, 2007)

Whatever, someone heard you wanted improved BM and traded you for pain.


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## Kev (Dec 14, 2007)

OK, the roller coaster ride is on track, proceeding at full speed. woke up this AM and was minus the abundant energy of the preceeding days. at least pain didn't force me out of bed... but the extra energy I've just become used to feeling in the morning sure was missed.  had my 1st smoke, and no head rush. Then, my first trip to the bathroom... way back down to a 1 out of 10. Why?  WHY? WHY? WHY?  The only thing I did different was to take my LDN 1/2 hr. earlier than usual.  could that have done it? I doubt it! freakin disease!!!  OK, folks, that's todays latest.  Anyone considering this LDN treatment, IF my results are any 'standard', then be prepared for these highs and lows, as it definitely doesn't work like prednisone does. Theres no rhyme or reason, no predictability, no pattern, worst.. no 'dependability' (sigh) :-(


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## drew_wymore (Dec 14, 2007)

Sorry to hear you're going on the downside Kev. Hopefully things will perk back up quickly.


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## D Bergy (Dec 14, 2007)

Prednisone works in a direct manner, stomping on the immune system.  LDN works indirectly by tricking your body into healing itself by improving the immune response.  A much slower, but gentler way of treatment.

I am pretty sure two months from now you will have this part behind you, and will have stabilized.  You probably are eliminating all of the nastys out of your guts.  I have had this same reaction by using Chlorine Dioxide to kill off bacteria.
Even with a powerful bug killer like that it took a few days for the symptoms to go away.  Lots of bacteria in the guts.  Pounds of it.   Once it is gone though, every thing gets real normal.

I hope that is the reason, but time will tell.  Hang in there.

Dan Bergman


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## Kev (Dec 14, 2007)

Thanks Drew N Dan.  You know, I've gone into other treatment regimens where the outcome was a big unknown, whether they would work or not up in the air.. and yet I didn't experience the 'anxiety' that I feel with this big 'LDN' experiment.  Now, whether that's some rare, bizarre, unheard of side effect of LDN or not remains to be seen (altho I doubt that's the case).  I think its more likely that I've pinned my hopes on this one as it is so much more palatable an option than the others...  And, although I entered into it with my eyes supposedly open, I think I had set my minds eye on a certain level of expectation..  i.e. that either it was a bust, and I'd continue on my downward spiral; else I'd see slow, steady improvement without significant 'bumps' in the road.  What they say about no news being good news is just a total crock.  Its' the not knowing for sure either way that's so difficult. It would be quicker, less painful in the long run to get a definite no from the start Versus a long, lingering, jurys still out scenario that keeps one up in the air.  Really, the issue for me right now is that I neglected in deciding to do this, to factor in the 'no one really knows' quotient and its impact on me.


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## D Bergy (Dec 14, 2007)

I understand.  I fear not knowing also.  I do not care if it is bad news or good news.  I just do not like the unanswered question.

Dan Bergman


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## Kev (Dec 15, 2007)

Well, this morning, I get out of bed... not driven out by pain, but not feeling like I want to go dancing either (and I have had those mornings recently). My first foray to the bathroom offered me a couple of surprises. First, normally my first trip is the worst of the day - pain wise.  I typically have to have a smoke to get thru that..  Not today. (Big change)..  Second, my BM scales is at 1... and I am also surprised with a significant amount of blood - worst I've seen in 13+ months.  That was un-nerving. So, forcing myself to look past that, to chaulk it off for the moment as a quirk, possibly internal hemmerhoids, whatever.. I get on with the rest of my day.  Pain wise, it's been a great day. no pain with meds or meals, an occasional cramp/pain so mild they are almost un-noticeable. No forced nap during any of this - even tho my energy levels aren't the best (nor the worst) but that's possibly/probably due to the blood loss.  nine hours later, I make my 2nd foray to the bathroom (and that's a pretty good indicator there, 2 trips in the span of the day - that is way better than usual past 2 months) AND - NO BLOOD. not a freakin drop..  and my BM scale is between 3 N 4.. In the span of 9 hrs...  OK, I'm not freaked out.  think the blood this AM was collected over night..  will see what tomorrow brings.  Overall, if I try to keep the reappearance of blood in perspective, its' been a very good day.  Now, I don't know what's typical of LDN, I don't know if someone else trying it CAN/SHOULD expect this level of trauma/drama. It could be I just went too long w/o traditional therapy.. things just a wee bit too downhill, I really don't know.  Whatever, if you go this route, be prepared for a little trauma/drama... cause if my case is any thumbnail, LDN isn't 'predictable'. Course, we all know already that IBD isnt' predictable either. OK?


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## AbstractDonut (Dec 16, 2007)

Maybe you will just have a downhill period because you quit your other meds.  I know the first 3 weeks were pretty hard, I had lots of pain.  The only difference is I was somewhat eating off my diet.  Not constantly at that point.


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## Kev (Dec 16, 2007)

I don't know where I am, either up or down. Like, typically signs would tell me whether I was holding my own, making progress, or in a downward spiral. but since the LDN, the signals are all mixed up, some good, some bad, others just puzzling.  Like, yesterday, aside from the blood, everything looked positive. I think the blood, more importantly the amount, wasn't really a major bleed all at once, just a pool collected slowly overnite. That's just a hunch... but, if my body is working right, cleansing toxins, whatever.. and I go to sleep and my nicotine levels diminish, my bleeding could go up. I have nothin to base this on, pure speculation... other than my 'head rush' in the mornings.  Or it could be just a buildup from hemmerhoids, and with my stool increasing in diameter (sorry for the gross talk without warning) it could be that I strained some of them to the point of bloodloss. Who knows

Anyway, today is different than yesterday (so what else is freaking new). I am off schedule... it's nearly 4 PM my time, been up since 9 AM, and as yet I haven't gone to the bathroom.  That is just so totally bizarre. So I don't know yet whether the bleeding will show up again, or what triggered this (I suspect I may be on the verge of the big. bad 'C'), or how bad it will get. I am sticking to a liquid diet, and hoping for the best.  My pain levels are up a bit, but with the lack of activity, that's to be expected. Otherwise A-OK


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## rhapsody86 (Dec 16, 2007)

wow, Kev, sounds like a roller coaster there. but thanks for keeping this thread up it's been very helpful i'm sure to people who are considering LDN.

good luck and I hope you feel better fast.


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## D Bergy (Dec 16, 2007)

Not having a BM by 4:00 PM is a sign of being normal.  I wouldn't make too much of it yet.  Normal people do not have several a day.  And since you were probably emptied from D, you could go a couple of days without any action, if you were reacting normally.

Could be a good sign.  I hope it is.

I have reduced my supplements to pre-Crohn's levels and have had no adverse effects from the drop.  I will give the credit to the LDN, but realistically, it is far too early for me to come to any conclusions.  It has screwed up my sleep a little.  I will wake up at around midnight out of a sound sleep.  Kind of weird. 

Dan Bergman


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## Kev (Dec 17, 2007)

Thanks for the words of encouragement... and for posting results (or lack of same) of your trials with LDN.  I have woken up at times from a deep sleep on LDN..  Typcially just went to the bathroom (age, not crohns), returned to bed and had no problem getting back to sleep.  As for the changes to my personal schedule, pre disease my bodily function schedule was very predictable. Could have set my watch by it, which made asking me the time a risky proposition.  Anyway, by 7 PM last nite, my worries got resolved.  mother nature made her call, and I accepted the charges. A-OK on that front, no blood - not a trace, and a definite 6+ on my 1 - 10 scale.
A little bit of cramping last nite at bed time... but mild to moderate @ worst
This AM, got my 1st smoke head rush, very little pain, and mother nature is indicating I got a call pending.  Energy levels are up a little, and I feel good
(I knew that I would now - God bless James Brown). Think I've recovered a little from the 'freak-out' from the bleed episode.  everything is copacetic!


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## D Bergy (Dec 17, 2007)

A six.  I am impressed.  I think you have invented a new Crohn's symptom measurement tool.  Maybe a chart with examples would help make this a universal tool.

Would look nice hanging above the mantle.

It is kind of strange to have to grade your excrement.  I am sure we all do it.  This disease has all kinds of funny habits that go along with it.  I remember showing my wife my parasites in my stool.  You know your wife loves you when she puts up with this kind of stuff.

Dan Bergman


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## Shane (Dec 17, 2007)

A couple of years ago whilst my girlfriend was working on a GI ward she brought home a Bristol Stool Chart and thought it would be funny to pin it on the toilet wall. But, that was before I got Crohn's. Wish I had kept it when we moved house now!


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## Kev (Dec 17, 2007)

The (pardon the phrase) 'whole' idea was foreign to me UP until I ended up in the GI ward for a week after one of my trips to the emergency room.  That's the place where the oldtimers convinced me to start smoking again to stop my bleeding (it was uncontrolable at the time).  Anyway, every trip to the shared (4 bed ward) bathroom had to be accompanied with an honest to god 'chart' where I had to record the details of my 'output'. It's something that I skipped in school.  And they had far more categories that had to be 'filled in' than I had ever even imagined, let alone considered. So, I realized the importance of this aspect of my illness (as far as medicos go in tracking it per se)..  Most of it was 'objective', but with the categories, a lot of 'subjective' (again, not a subject we covered in school) info came into it as well.  That's where I simply placed a 1 - 10 scale on my output. I won't go into the definition...  as they say.. 'beauty is in the eye of the..' 
Essentially, with 1 representing a lowest expectation output from a 'scope' prep for example - we then go up the scale  to 10, representing a healthy output...  say something akin to what us men might even brag about, w/o any IBD being involved.  Not sure if that is applicable to all 'men', or just those of us who were raised/reared in a 'farm' or 'ranch' style lifestyle..... sort of the Bo Derek in the world of excrement.  something one could picture running across a beach in slow motion...  minus the 'corn rows' (or with, if one is into the sort of thing).  OK, hows that for a totally, terribly inappropriate take on what should be treated as a totally serious topic?


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## D Bergy (Dec 17, 2007)

You certainly have a way of putting things.  The "Bo Derek" of Turds is how I would describe my current condition.  The kind that almost need to be put through a kitchen sink disposal unit.  I am somewhat proud of it.  It is certainly better than the "Phylis Diller" type.

Men are pigs, as I am sure about half of the population will attest.  We can't help it.

Dan Bergman


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## Kev (Dec 17, 2007)

Well, in keeping with that analogy (or should that be 'anal' 'log'?) if the 'goal' is a Bo Derek (Hmm, trying to think of a current equivalent the kids would know) OK, say a svelte, 'alive', Anna Nicole Smith...  then my current would be about a ... non pregnant Nicole Ritchie (notice how I managed to put two "nicole's" in my description... or is that 'nice oles'?)  Just cemented the pig designation!


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## rhapsody86 (Dec 17, 2007)

you're too funny, Kev. hope you're feeling good as gold this evening.


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## Kev (Dec 18, 2007)

well, last evening I was feeling pretty damned good. My BM scale went up one more notch.  I was starting to feel pretty cocky.  This am, the 1st day of my 4th week, I thought I'd do a recap of my 1st full 3 weeks on LDN therapy. But I was in for a 'rude' awakening. No aches or pains when I got up, but also no head rush with my 1st smoke. Then, my 1st trip to the bathroom, WAY back down to a 4 out of 10 on my BM scale. WHY? Not a clue.  took all my meds yesterday on schedule... but I did overdo it a bit in trying to finish my Christmas shopping (still one gift to buy, and three to put in the mail)..  On top of that, i somehow overlooked taking my acidophilus. Could those explain my little relapse?  I guess so.  My energy levels are up, my pain levels remain down (knock wood).  LDN is still a roller coaster ride.


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## Kev (Dec 19, 2007)

Alright, another day, another 2 cents worth.  Had one of those side effects nites last nite.  Really lurid dream about me and a famous Italian actress. And, contrary to public opinion, I normally don't have dreams like that, mores the pity.  My only other comment on this is, if that was typical of the side effects of this LDN, then the smart move is to ask the doc to up the dosage.  Other than that, everything is pretty much same old, same old.  no head rush, but no aches/pains either.  some noise from the old gut, but no cramping with them (at least not yet) 3 weeks ago those noises would be accompanied by some fierce cramps (figure everyone here can relate to that).  and, I've yet to make my 1st trip to the old water closet. Hm, wonder what's in store! so, I really appreciate all of the improvements I've experienced from LDN, I just wish that it would go one way or the other soon, and not leave me here in some sort of 'no mans' zone middle ground. you know what I mean?


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## D Bergy (Dec 19, 2007)

Which actress?  I have to live through your dreams since I am getting ripped off on mine.

Even if you get stuck where you are, I think a few supplements could take you to a higher level, but I think your condition will only improve with time.  Maybe you are expending too much energy chasing Italian actresses?

I actually did have a vivid dream today, (I worked graveyard shift last night).
The phone rang, and I forgot what it was about, but I know it was not as interesting as yours or I would have remembered it.

Dan Bergman


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## Kev (Dec 20, 2007)

Wellllll, without going into the lurid details, it was gina lollabrigida (sp?) which I find odd because I've always had a thing for sophia loren (besides it's easier to spell).  The truly embarrassing part was that I was apparently tossing and turning, even talking in my sleep.  And why it took place on a public bus I'll never know.  So, you folks with partners, better hope theyv'e got a sense of humour.  Just thankful it didn't include any sleepwalking too!

Anyway, another day, another case of mixed messages.  no dreams last nite, woke up feeling refreshed, energetic (which is always nice).. but last nite my incessant itch returned.  I'd forgotten about it, and had no creme, so it did take me longer to settle down than I've become accustomed to. I don't know if that affected anything, or is some kind of sign I've plateaued. I got a great head rush with my 1st smoke, but my 1st trip to the bathroom was a disappointing 4 out of 10.  Pain levels are still way down though, so I am not panicking.  The rest of this is pure speculation, but it deals nicely w my 'anxiety' levels.  think my body is slowly turning around, fighting off the damage from the IBD.  I don't think it's going to be a quick knockout in the 1st few rounds, think this one is going the distance. I also think other ills in my old body distract my now correctly functioning immune system, taking it off the main fight at times.  Like, I had the start of a nasty sore throat, and an earache, but these only lasted a day N 1/2.  Think either while my immune system is off kilter it overeacts to normal bugs like this, then the LDN kicks in and re-sets it, or vice versa... Or, the LDN kicks in, re-sets my immune system, it starts to work (slow process) and then the crohns fights back.  Like I said, this is all total conjecture, nothing to back it up with, but it allows my mind to make some sense of the back N forth seesaw battling I see in the ups, downs and in-betweens of my day to day symptomology, OK


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## D Bergy (Dec 20, 2007)

The itch thing is odd coming back out of the blue like that.

Could you have eaten or been exposed  to something that caused it to happen? New laundry detergent or fabric softener?  If you have some Benadryl or other antihistamine you could take it and see if it goes away.  That would point to an allergy.

Sophia Lauren, you betcha.  I am not familiar with the Gina person.  You must have been on the "Magic Bus".

Dan Bergman


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## Kev (Dec 22, 2007)

It's odd the twists and turns that life takes you on.  I actually dated a girl who was the spitting image of Sophia when I was in my early twenties. I still have a couple of photos of her in an old picture album.  As for Gina, guess you will have to Google her..  anyway, regarding the itch, no, no exposure to new anything.  can't figure that one out. Very next day, I had as close to perfect an LDN day as possible.  no aches/pains/cramps, got my morning head rush, and my bathroom trips were all between 6's N 7's. 
now today.. I dunno.  Aches N pains, but that could be due to re-painting the kitchen for the holidays (why do women insist on these things @ Xmas)
no head rush either.  waiting for mother nature to call w fingers crossed. if its another yo yo day, then I'll just accept it as part of the LDN process. I do feel 'certain' of one thing...  that I'm definitely not getting worse on LDN
and my 'belief' is that I'm slowly and 'repeatedly' getting better, day by day.  I just wouldn't say it's 'steady'... more ups and downs but with what I like to think of as a definite upward trend. But that is pretty subjective.


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## Kev (Dec 26, 2007)

OK, 4 weeks down, and 8 to go.  The last 3 days have been great. mornings I wake up feeling refreshed/energetic.. have my 1st smoke, get my head rush. I have had 3 days of either 6's or 7's on the BM scale (sorry if that confuses my UK brethern... and 'SISTERN'???)  I know that feeling 6's N 7's in the UK has a different connotation.  My pain levels are down, my energy levels are way up. I did eat something last nite that disaggreed with me (invited out for Xmas dinner, expected either turkey or ham, instead was fed roast beef - not a good idea, but I ate in anyway.. shoot me)..  Anyway, that's my 4 week recap and 3 day catch up. Merry xmas!!


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## Sojourn (Dec 26, 2007)

It definitely sounds like progress.  Hope you didn't eat too much of that roast beef.


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## Kev (Dec 26, 2007)

I started off with all good intentions not to eat much...  just a little, both to be polite, and to prevent the topic of my health coming up at the table. but, it was standing prime rib...  so i'm betting you can guess what happened next. I did manage to stay away from the sweets..  I had one 'brown' sugar cookie, and one rum ball, and one nainaimo bar...  I ended up having a rough nite, but it could have been worse, and it was worth it. how I miss the taste of real beef...  Thankfully, xmas comes only once a year!


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## Kev (Dec 27, 2007)

Another day on LDN, and another really good day to report. That makes 4 in a row (so much for being too superstitious to say that out loud). Keep the faith!


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## D Bergy (Dec 27, 2007)

You may be over the hump with the yo-yo stuff.

I ate like a pig the last couple of weeks.  Surrounded by holiday food at home and work.  I have actually gained four pounds from eating so much.  Now I have to start eating much less before I have to buy new clothes.

The good part is`that I did not have any Crohn's related problems in spite of my indiscretion.  I think the LDN is doing as advertised for my part.  

Sounds like you are doing a lot better also Kev.  That helps me to have more confidence that it is holding my Crohn's in check.  Best Christmas present I have ever had.

Dan Bergman


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## Kev (Dec 28, 2007)

Wellll, today is starting off great.  hit an 8 in the BM scale.  now, they say the dreams issue is supposed to resolve itself in the 1st few weeks.  I went nights w/o any vivid dreams...  but last nites was a doozy.  Went off the lurid scale into the X-rated. For obvious reasons, I can't go into details... but there was one aspect of last nites dreams that is worthy of note (for different reasons). In my past encounters with these side effect dreams, I was pleasantly surprised that, instead of nitemarish episodes I'd expected, they were simply filled with vivid details.  My first was of a tropic resort, and I was able to see the lobby, the pool, the sunbathers, even the drink in my hand at the bar, and the finely etched details of the glass. all clearly! I'd never been to this resort, never saw those sunbathers, before in my life. Imagination is a great thing.  however, despite those incredible details, the dream was like watching a movie on a big screen, or some sort of 3D movie.
Like, I couldn't feel the warmth of the sun, or a breeze on my skin, or even the 'touch' of the glass in my hand.  I saw them, but couldn't feel them, OK Last nites dream came complete with the sensation of touch.  Not only did I feel the things I touched, but I felt touched in return. Never experienced that sensation before.  Maybe I've missed out in the past, and everybody else has that ability.  I dunno.  now, I'm not going on at length about this in an attempt to make others jealous of my late nite hallucinations. I'm glad I had the dream that I had.  Maybe thats my 'dirty old man mentality'. No, I mention it because if it had been a nightmare, with the touch sensation, it would have been off the scale.  I've ha ha'ed at the thought that 'dreams' were a laughable side effect.  I was myopic.  A dream so real that it even includes the sense of touching and being touched, that could be trouble if it was of the 'wrong' sort.  Anyway, here's hoping that my dream phase is close to ending, and that any subsequent dreams remain the 'nice' kind, OK

So, if you are considering taking LDN, and have a history of nitemares, then you have a little food for thought. let's hope it doesn't keep you up nights.


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## Kev (Dec 29, 2007)

OK, another day, and the good trend continues.  No ill effects at all, no dream report this AM either.  Energy levels still up, pain levels still way, way down. My BM scale is still in the 7 - 8 range, which I feel is a good indication that my colon is healing.  And I'm begining to suspect that there is another good side effect of taking LDN.  I am still getting my morning head rush when I smoke my first cigarette of the day, but I've just started to realize that my interest in smoking is really, really extraordinarily low. It's a surprise, almost a shock.  I used to feel antsy if I didnt' have a smoke every 2 hours or so.  now, I feel like I can take it or leave it, AND when I do have a smoke, my enjoyment of it is way below my pre LDN usual scale. I am beginning to think that the original intent of taking naltrexone, used to treat opiate or alcohol addiction/dependany, MAY be working on my habit of smoking.  I am soooo tempted to toss them, esp with New Years so close.  But, after having experienced the effect of removing nicotine from my system on numerous occasions, and with my regular GI on maternity leave, I figure the wise thing to do is bide my time, wait till this summer.

Anyway, that experience is purely subjective. I may be way off the mark. I would be interested in hearing if other smokers taking LND experienced any similar feelings.  If you have never smoked, there is no way to describe the truly addictive nature of this habit.  They say that it is 2nd only to herion in intensity.  Just tossing this out, as I've definitely noticed a downturn in the intensity of my addiction.  could be a wonderful side effect benefit of it


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## Kev (Dec 30, 2007)

OK, this is getting monotonous.  Actually, that's good news, no matter how boring.  I think, barring any negative developments, that the slow nature of LDN (altho other meds can be as slow, if not slower) means that daily updates really aren't necessary.  So, I'll switch to weekly ones, commencing Tuesday.


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## Kev (Dec 31, 2007)

Well, that should teach me to keep my big mouth shut (most likely it won't). I had a ruff nite.  sleep disruptions.  And vivid dreams broken up by them. Kept waking up every hour or so.  So, I wasn't feeling my new typical self this AM. Then, my 1st trip to the bathroom. I expected a disaster, at least a big setback. Instead, a solid 9 on my BM scale. Talk about reason to ring in the New Year. OK, so today is the last day of my 5th week, and this is the 1st episode of a bad nites sleep.  all in all, I have zero reason to complain


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## D Bergy (Dec 31, 2007)

I slept like crap also.  Had a dream that my house was on fire, luckily I woke up. 

There I was, awake at three in the morning.  Laid there until 4:45 and got up to get ready for work.  First dream like that I have had in a long time.

Glad you are doing so well Kev.  I predict smooth sailing for you now.  I hope some others here that are not having much luck with their meds can get similar results with LDN.  I have had no problems, except for that one dream.  What a piddly side effect.  

I feel like I am getting away with something.  Almost a guilty feeling that I am not doing my fair share of suffering.

Dan Bergman


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## rhapsody86 (Jan 1, 2008)

Hey Kev, glad to see you've been doing well. I literally clapped/squealed out loud when I read your latest BM scale.

Hopefully you'll begin to sleep better though. Keep your thoughts positive and as care-free as possible. Maybe that will at least help a little.


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## Sojourn (Jan 1, 2008)

A 9?  How long has it been since you could say that?  I wouldn't be able to remember the last time I could say that.  And if you do ultimately reach what you could call remission, maybe you could toss the smokes.  Though I understand if you did reach remission that would be a somewhat fearful thing to do in the fear of it causing a relapse.


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## Kev (Jan 2, 2008)

Well, I've slept like a baby the last 2 nites.  had a detailed dream last nite, but it wasn't anything to lose sleep over.  I missed out on the fireworks on News Years eve (at a party)... so last nite that is what I dreamt about. Why? Who knows, who cares..  My BM scale is staying put in the 8 N 9 range. As to the last time I recall a 9...  shortly after my resection.  That is when I allowed myself to truly believe what the surgeon had told me.. that I was cured.  so from that experience I am treating my current situation in a very cautious manner.  However, the 3 steps forward, 2 steps back phase of this treatment seems to be behind me (knock wood). If it remains that way, the I plan to reintroduce some fibre, fruits and veggies to my diet, see if/how well I tolerate them...  As for the smoking, once my GI is back from maternity, I think my next step will be to wean off them.. if that goes well, then I'll start weaning off/tapering down on the Salofalk (5ASA).
Of course, this is all contingent on getting my LDN refilled in Feb (fingers crossed). I can't see any reasonably sane GI refusing to write the script.

The only other thing that's worth mentioning is that, in the overall scheme of things, a side effect like dreams or sleep disruptions can be a nuisance, but it is nothing worse than a mild inconvenience, AND it proves the LDN is doing something. considering some of the sources people are forced to use to get LDN, I would take comfort in that these would indicate you have LDN and not some pill filled with a placebo, or something worse. just a thought.

so, less than a week to go to the 1/2 way mark, my personal take on this is that for anyone who is running short of options, who isn't currently on any of the meds where coming off/going back on is a problem (remicade, etc).., then take a look at LDN. It might be just the thing to turn things around.


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## Kev (Jan 3, 2008)

Me and my big mouth.  Roller coaster ride is not over. When will I learn that a string of good days does not a 'remission' make.  got up this AM after a great sleep, had my smoke and my telltale headrush.  pains are ok, energy is good, but I've had 2 trips to the bathroom, in the first quarter of the day, and on my BM scale I've dropped down to 4's without any warning or reason. Why? Good freakin question.  All sorts of thoughts churning around, but nothing definite. even wondered if the quality control of the pharmacy that compounded my pills may be an issue.. but I tend to dismiss that based on the morning head rush.. and my low pain levels and hi energy level.  Did I do something?  Welll, I added a pinch of seasoning to my pasta sauce... and I did have a bowel of baked potatoe chips (crisps to my UK friends) while watching a video at home last nite. could these be the issue? I don't know if it's rational to blame this on a 1/8 teaspoon of Oregano, or a small soupbowel of low fat, baked lay's..  altho they were flavoured (this is something I haven't tried before)  artificial BBQ flavour, artificial color? Clutching at straws.  mostly just angry at me...  should know better than to get my hopes up.  This disease has never played fair in the past, why I expected it to play fair now escapes me.  OK, OK, live and learn, right???


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## D Bergy (Jan 6, 2008)

Had a big pool of blood in my stool a few days ago, likely from drinking too much coffee. Possibly some stress from daughters wedding that is done with now. Completely gone the next day.  No change in the #10 BM scale.  Everything normal again.  Weird.

Dan Bergman


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## Kev (Jan 6, 2008)

Yeah, there seems to be a trend starting here...  Positive effects (or at least no raging adverse effects) then all of a sudden.. Whamo!! Things go south w/o warning or explanation.  then, before you know it, all is well again, maybe even better than before.  this is one aspect of this treatment that I find more than a little disconcerting.  Hey, I can settle for the 3 steps forward, 2 back occasionally.  Just wish I could figure out the why's and wherefore's.  But then, what part of our lives is that predictable, right?


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## Kev (Jan 8, 2008)

So, if a string of good days does not a remission make, does it hold true that a string of bad days does not a failure make?  Here I am, 6th week anni of LDN, and I'm just one step ahead of where I started off from.  Benefits have almost all seem to have faded... and I haven't an inkling as to why. Pretty hard to stay optimistic at this point, but i'll keep plugging away for the next 6 weeks.  Hope others are faring better. Que sera, sera


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## Nancy Lee (Jan 8, 2008)

Hang in there Kev.
We're all still routing for you and the LDN.
You're a fighter and right now I wish I had some of that left in me.
Hugs.


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## Shane (Jan 8, 2008)

Yeah Kev, like Nancy says, hang in there. I'll be reading with interest as when my Infliximab '_honeymoon_' comes to an end I'll be most likely looking at LDN as one of my few remaining options.

Good Luck,

Shane


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## Sojourn (Jan 8, 2008)

Sorry to hear of your recent downturn.  I know your health plan doesn't currently have provisions for Remicade or Humira, but if LDN doesn't work, I wouldn't give up on finding a way to get it covered.  There has to be some way, I would think for a person with moderate/severe Crohn's in Canada to be covered for this.  I would hope, if not now, maybe sometime in the near future.


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## D Bergy (Jan 8, 2008)

Is your pain back also Kev?  Or just the bad BM scale.  

Dan Bergman


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## Kev (Jan 9, 2008)

Here's the down n dirty on me.  Pain levels are still low, almost none existent.
But, my BM scale is way down, 3's N 4's the last 4 days now. Energy levels are way down..  memory is so so, and my mental faculties (sp) are muddled again.  Last nite, just to add insult to injury, my hot n cold spells returned. My next GI appointment is a month away, hoping things will turn around before that, otherwise will be difficult to convince doc to refill my 'script'. 
So, despite this unfathomable set-back, I'm trying to remain optimistic. But, a very bad realization came over me yesterday. I made an assumption, and it was a big assumption. I assumed that the 11% who failed to respond to LDN treatment did so from the get go.  But what if some/all of them started off like me, then in mid-course, it all simply stopped working? That's a worry that is hard to compartmentalize. I try fighting that thought with a hope the setback is due to either a flare of my IBD, or a secondary infection of some kind that is putting a strain on my immune systems capacity. The fact that I am not displaying any symptoms of this imagined second ailment does not bode well.  And if it is a flare of my IBD, what does it say for LDN?


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## D Bergy (Jan 9, 2008)

I doubt very much that it would start working and then stop.  The mechanism just would not likely work that way.  I think it is more likely that it is just more of the roller coaster effect, or your compounder is not doing a good job and your LDN is varying in potency.  

Are you using one of the approved compounder's listed on the LDN site?  Have you just started a new bottle of LDN?  I would eliminate that as a possible cause before anything else is considered.  Given that they have the list, indicates to me that it may be fairly common for people to get poor quality LDN.
This is one common problem with compounded drugs.

I hope your symptoms start improving again soon.

Dan Bergman


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## Kev (Jan 10, 2008)

Hey Dan...  Thanks for the words of encouragement.  I really don't know what is going on.  Yesterday, I hit a 2 on my BM scale (right back where I started), then last nite at bedtime my pain levels shot up again.  This AM, I got up out of bed feeling tired, drained, miserable (again, just like before starting on LDN)
and no head rush with my 1st smoke.  But, on a positive note, my 1st trip to the bathroom netted me a 3 (not great, but it is the 1st sign of any sort of upward trend in the last 4 days)..  I've tossed around a lot of ideas in my head, trying desparately to figure out what da f#$% was going on here.
Like, was this all psychosomatic... or were the pills stored at an incorrect temp., or did the pills have varying degrees of Naltrexone in them, you name it AND I've probably considered it.  As for the pills, same old same old. Haven't started a new bottle, prescription, etc., and although they are not listed on the LDN website, I intrinsically (sp?) trust that my pills were compounded properly (course that is just another big assumption on my part)..  When all is said and done, I'm hoping that this is just a bump in the road, that my IBD is fighting back, flaring, but that with LDN treatment my body, my immune system, WILL eventually win out.  God, hope I'm right...


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## saidinstouch (Jan 11, 2008)

Maybe you just got some other minor illness and your body focused elsewhere and let up on your crohns healing.  Give it more time because it sounds like you don't have many other options before remicade/humira and you dislike those about as much as I dislike prednisone it sounds like.  Even if it is a bumpy ride for a while, I'd rather see improvement over time and have a few lows so long as in general I keep moving forward from them.  Good luck!


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## Kev (Jan 11, 2008)

Here's a thought...  Anyone any idea on the shelf life of pills compounded from pure, bulk Naltrexone powder?  Could it be 90 days, 45 days, maybe 30 days?


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## saidinstouch (Jan 12, 2008)

That would be one to email the makers about or ask your pharmacist, it is quite possible your pills expired or something.  If its rapidly declining like this and you feel it isnt working the other possibility is that it really isnt working because it expired or something.  Hopefully you get to the bottom of this, but if you can afford it ordering a new batch might be an interesting test.


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## AbstractDonut (Jan 14, 2008)

Have you been stressed?  I'm thinking you shouldn't worry, it seems Crohn's has always gone in cycles for me.  A few days okay, a few days bad.  We know LDN is slow however it goes.  The results from that study seemed to suggest it to me.  60% got remission, 89% saw at least some improvement.  I would think it was the 40% which had it worse and the 60% not too bad.

Besides even your scale is no match for medical examination.  You may be improving steadily and if you have a test the next time you go in they may show that.


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## Nancy Lee (Jan 14, 2008)

Kev,  I agree with AbstractDonut!!

"Besides even your scale is no match for medical examination. You may be improving steadily and if you have a test the next time you go in they may show that."

How true this is!!

Take care and try to relax a bit my friend.   

Hugs~Nancy


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## Kev (Jan 14, 2008)

Well, there is/was no stress going on.. in fact, before the reversal, I was almost euphoric.  Bm scale aside, my other symptomology has reverted (almost all of it) to where I was pre LDN. (pain levels are still lower, but seem to be creeping up a little each day.)  I have no explanation for my situation.


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## D Bergy (Jan 14, 2008)

My pills say to discard after one year.  So I am guessing that the shelf life is a little longer than that.  

I would consider getting a refill at one of the approved compounders, just so you can rule out a varying dosage.  Or, maybe ask the head pharmacist if he could personally supervise the compounding.  If you call Skip at Skips Pharmacy, maybe he could shed some light on your reaction. He is an MD.   Maybe there is some trick to doing this correctly.  From what I have heard, he is a very good guy.

It just seems very odd that you could improve so nicely and then regress.  I would expect it would work and keep working, or it would not work from the beginning.  Especially since you no longer get the head rush.  That seems like you are not getting the medication.

I really hope you can get to the bottom of this.

Dan Bergman


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## Kev (Jan 15, 2008)

Thanks for the info, Dan.  Shelf life of a year, eh?  Sort of blows my theory. I have a GI appt in 3 weeks. Think I'll stand pat till I have that consult, perhaps get a new prescription/fresh refill... see what happens, what the GI thinks too.


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## D Bergy (Jan 21, 2008)

Any improvement in your condition Kev?  Or are you at least holding ground?

Dan Bergman


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## Kev (Jan 22, 2008)

I'm almost too scared to say this, (KNOCK WOOD) but it seems to be turning around.  My symptoms have eased off, my pain levels receded, energy levels improved, and my BM scale has inched back up to 5.  Keeping fingers crossed.


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## D Bergy (Jan 22, 2008)

Hooray!!!


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## Shane (Feb 5, 2008)

How are things going with the LDN now Kev?


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## Kev (Feb 6, 2008)

OK, just finished week 10.  Results? mixed...  overall, my pain levels are down, my energy levels are up..  but my BM scale is a toss-up.. currently at a 5, and there are definite indications that I do have some fairly active inflamation in the colon.  On top of that, some of my side issues associated with my IBD are currently active... fingertips/fingernails are cracked and extremely sensitive, and that damned itch in my legs at night is back. That's pretty much my current/recent status. I have developed some nasty hemmerhoids, which I treated with some left over 3 yr old Proctosydal sup.,
but altho it helped somewhat, they're still a proverbial pain in the...  As I was saying, that's my current status. I have no idea (at the moment) why the amazing results I'd seen up to the 5 - 6th week of taking LDN seemed to regress/stop.  Don't get me wrong,..  Considering my condition 10 weeks ago, where I am today is far N away much better in all aspects. It's just that having been nearly to the top of my BM scale, with little/no symptoms, it's hard to accept that it rolled back on me.  does that make any sense?


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## Shane (Feb 6, 2008)

Yes. Seems a strange one. When is your next review with gi doc?


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## Kev (Feb 7, 2008)

Had it yesterday with a doc who is filling in/fitting me in, while mine is on leave.  Never met this GI before, just glad that I'm not a permanent patient. This doc believes it's ill advised to try to treat IBD, far better to just supress the symptoms.  Can you believe this?  Obviously no one close has IBD. Total lack of empathy, cut and dried.. 'there's no hope beating this disease, so you might as well face it, accept it, lay down and just get those symptoms out of sight'  Sort of like the old joke (really tasteless, you have been warned).. about the doc who tells patient "I've good news, and bad news..  The bad news is you've got AIDs, the good news is that you've got Alzheimers too, so you can just go home and forget about it!"  Anyway, he reluctantly agreed to refill my LDN for 2 more months, but since his self described philosophy is that there really isn't any practical, realistic way to beat this thing, pursuing LDN is a waste of my efforts and his valuable time.

God, spare me from these pantywaist egotists who think they're Gods gift to humanity.  Oh, and when I told him about the resulting complications due to my sudden increased BM condition causing hemmerhoids, and asked for a prescription strength hemmorhoid suppository, he turned me down flat.  According to him, OTC treatments were just as effective.. Yah, right!!

So what it boils down to is this temp GI is nothing but a big pain in the ass!


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## D Bergy (Feb 7, 2008)

Thank you for the update.

Like I have said before, most doctors are not too innovative when it comes to treating disease.  It just is not in their best interest.  But our interest in the matter is quite different as we live with the disease.

Consider yourself lucky to have such a good regular doctor.  That is rare in itself.  Most of the ones I have run into are like the one you just described.

I hope with more time you will get back to the good results initially experienced.  They always say six months to a year to allow it to work to its full potential.  It is hard to wait that long. 

One possibility is that initially the LDN quickly healed your intestinal tract to a degree and the BM improved as a direct result.  As time goes by the LDN is regulating your immune system and it starts attacking the bacteria in your intestinal tract.  My experience is whenever you kill off bacteria, it gives you the big D.  Just like having the flu.  Your body has to cast off the dead bacteria, virus, or parasites as quickly as possible.  Most any treatment that kills these pathogens produces the same reaction.

Of course, it is just one possibility.  But if it is correct, it will pass as soon as most of the offending pathogens are gone.   I really hope this is the reason, but if it is not, you will know that also with time.

Dan


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## Brando (Feb 7, 2008)

yeah what D Bergy is referring to is called a herxheimer reaction. it is a very common reaction especially with people that are killing lyme disease bacteria. it is also common when you have mass dieoff of bacteria elsewhere in the body if you introduce alot of medicine all at once.  good example would be getting an upset stomach while on flagyl or levaquin or penicillin.  there is a good chance it isn't the medicine itself that is making your BMs terrible or making you nauseas, headache, etc. but the killing the bacteria could be the reason.    

at any rate, LDN could very well be ramping your immune system up to a point where things are starting to get killed on a larger scale.  if your BM function improves and stays there then you could probably assume the herx is what is happening.


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## saidinstouch (Feb 7, 2008)

You might consider some probiotics being thrown in the mixture to help regulate bacterial levels a bit as well.  If you are in fact clearing a lot of bad bacteria right now, its an optimal time to throw some good ones in there.  I know ones like vsl are really good...but expensive and probably overkill for your needs if your body is already clearing the bad stuff out.  Hopefully it really is just your body starting to get itself into check and you will return to  (and surpass) your previous good standing in short order!


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## Shane (Feb 8, 2008)

Kev said:
			
		

> This doc believes it's ill advised to try to treat IBD, far better to just supress the symptoms.  Can you believe this?


Not what you want to hear, is it? But, as much as I detest myself for writing this...... Throughout my experience, all I've felt with any drug that has 'worked' (i.e. Pred & Infliximab) is that all they've done is suppress the symptoms and little else. Hasn't touched the inflammation or ulceration. I'm so sorry to say, but I think that's all the drugs on the 'market' are doing at this stage. Let's hope the next wave of drugs fare better.

Am I way off the mark with that? Kick me if I am.

I suppose though, that wouldn't explain why some people go into remission with some drugs. I just don't know. Maybe it's just my experience. Maybe I've got a rant head on.......


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## D Bergy (Feb 8, 2008)

The only drug I have ever taken for Crohn's is LDN.  I have taken various natural TNF inhibitors that counter inflammation.  I have no symptoms or bowel problems so far.

I do agree that most all of the official Crohn's drugs suppress symptoms, but LDN is different in that it attempts to correct the faulty immune response.  If you can trick the body into working properly there is no need to suppress symptoms.  This is not a cure by my standard as you still have to rely on a drug, but if it works, it is a far better way to correct the problem than immune system suppression.

Prednisone as a steroid should prevent inflammation.  But it still is just suppressing a symptom.  A useful quality for sure, but the immune suppressants seem to only work for a certain amount of time and the body adapts to them.

I cannot think of one good reason why it would not be preferable to treat the disease instead of symptoms.  I do not think the doctor can come up with one either.   He may not believe it is possible, and he is correct if you are his patient, and follow his advice.

Dan


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## Kev (Feb 8, 2008)

Yeah, that's one of the things I like about the LDN approach.  And, altho pred does suppress the immune system as well, there's a common held belief that a dose of pred (since you can't stay on it long term) will 'shock' the system so it reverts to the correct(ed) response.  My very first 'outbreak' , which nobody was able to diagnose, I went on very potent pred enemas for 45 days...  that shocked/knocked my system right for nearly a decade..  So, given that after the steroids wore off, my system remained in a 'corrected' state for a considerable length of time, obviously not due to the suppression of the immune system.  Come to think of it, I think (but how much do I know) that any immuno suppression regimen carries a risk of 'failure'..  What do I mean?  Well, you got IBD, take an immuno suppressor, catch some other non related 'bug', and what does your immune system do?  Kick in (or at least try to) to fight off this latest threat to the host. It seems (to me at least) to be a lose/lose proposition going in. Very defeatist.  But, if nothing else is working, you aren't in remission, and you're getting worse, then what are you going to do?  go the I.S. route to buy time...  

Anyway, here's a little something...  That fill in doc I went to see. He called me today...  just to say hi, and oooops (Dan, you'll love this one) he made a 'little' mistake writing my LDN refill script..  Accidently wrote it for 1000X my dosage...  Did I happen to mention I'm really glad he's not my doctor?

Anyway, the mistake was caught... the compounding pharmacy was called, and no harm, no foul.  Except for the batch of pills compounded at 1000X the correct dosage...  I wonder what happens to them, and who pays for it


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## D Bergy (Feb 8, 2008)

It shows how much he knows about LDN.  He gave you the regular dose of Naltrexone for drug addiction.  Maybe I am a little suspicious, but I would venture to say it is more likely the pharmacy caught the mistake, not the doctor.

Dan


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## Kev (Feb 8, 2008)

No, he gave me just a wee bit more than a regular dose...  They tested it at 300 mg for addiction, (and at which dose there were some serious issues) but typically, addicts only use 50 - 150 mg..  No, what he was going to give me in a pill was 4.5 GRAMS...  or 4500 mg... or between 30 to 90 times the dosage an addict would take a day...  Or, if I was using typical Naltrexone pills, thats 90 X 50 mg pills in ONE day.  Or 15 times what it was trialed at for addiction.  not sure what that dosage would've done to me..  Just glad that circumstances prevented me from finding out!! As for the pharmacy keying in on the mistake...  I don't think that occurred. Why do I say that? The doc HAD to ask me for the number to call them...  sort of like adding idiocy to incompetence.


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## D Bergy (Feb 8, 2008)

That sounds like it could have been serious.  I would think the pharmacy would question that dose.  At least I hope they would.

Whew close call.

Dan


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## saidinstouch (Feb 8, 2008)

Its my understanding that while the TNF inhibitors don't directly treat the symptoms themselves, by suppressing the immune system you indirectly allow the inflammation and ulceration to heal.  Since most of the damage is caused by the immune system (at least in some cases, assuming it isn't bacterial bi-products or some other possibility) when the immune system is kicked down a bit, you are actually treating the disease, just not the cause itself.  Hopefully you guys trying the LDN will continue having good results and in the future we'll hear some great things about it.  I know I told my aunt about it for her boyfriend who has MS and he was interested in getting more information.


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## Kev (Mar 8, 2008)

I have been very remiss in keeping this diary current. My apologies to those who have either a passing or personal interest in treating IBD with Naltrexone.

Here's the thing...  it's been extremely uneventful. Actually quite boring. At the moment, my status is...  pain levels down, practically nil, except for when I take my 5-ASA.  I still get moderate cramping from those, esp. at nite.  My energy levels are up..  I need only 1/2 hour or so in the morning to feel 'normal', whereas pre LDN, it typically took 2 or more hours to get right.  My BM experiences are GREATLY improved.. typically 1 - 2 times a day... no 'urgent' episodes... no pain..  and on a personal scale of 1 - 10 (where pre LDN my typical I'd rate a '2', no pun intended for a change) I'd now rate my 'typical' at 6's and 7's (and to my UK friends, that isn't any attempt at Cockney rhyming slang - so don't read anything else into it, OK)

Side effects...  My vivid or lurid dreams seem to have petered out, mores the pity.  There is definitely been a change in my 'enjoyment' of smoking... 
I get a head rush with the 1st of the day... but otherwise no pleasure of any sort when I light up.  At the moment, I sort of class that as a 'con', as it in reality means one less pleasure...  but at some point, hopefully soon, I will be quitting.. and it will take on a positive aspect. does that make sense?

Overall, I have to give the LDN 4.5 out of 5 on the IBD ROYAL FLUSH scale.
It has meant a dramatic improvement for me... there have been no adverse effects of note, and the cost of the treatment is minimal (about $1 a day).

The only reason I didnt' give it a 5 is that...  welll, (and this is probably just so unfair of me, childish, unreasonable, impatient... ) I was hoping for a big 'eureka'...  a '12 week' case of where I'd be... say at a 9 or 10 on my 'BM' scale...  Able to leap tall buildings in a single bound.. or at least just eat anything I felt like.  Thing of it is, esp. since i've had occasional relapses while on it, I havent' taken those chances. simply dont' have the guts yet.

So, I dunno what would happen if I skipped/broke my diet, or stopped taking the 4.5 G of 5-ASA every day... or stopped smoking cold turkey. 
These 'extras' could be major factors in the success I've had with LDN.. or not.  Thing of it is, I'm too scared to take the chance. Can't afford to lose!

Anyway, I'll try to pop in at least once a week.  Esp if there's any changes.
Otherwise, how many ways can one say 'Same old, same old'..  Thanks all!


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## D Bergy (Mar 8, 2008)

I am curious as to what your doctor thinks about your steady state.

I am also in the boring mode, with no issues.  I have to do something pretty extreme to even change my stool status.  Yesterday I ate six pieces of bacon, cooked a couple of eggs in the bacon grease and had some toast loaded with butter.  An awful amount of lubricant in the ole guts.  I did get get a bit loose stool, but I think any normal human would have given what I ate.

I am really as normal as anyone else.  I still have a lack of energy sometimes.  Not sure how much of that is shift work related.

Dan


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## Kev (Mar 8, 2008)

Welll, that's one of the things that's keeping me from taking risks like pigging out on a 'normal' meal.  My GI is on maternity leave, won't be back until July. And I think I may have alluded to my opinion of the GI that's covering for her.

Between no regular GI and a new job that I enjoy, dont' want to do anything to rock the boat.


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## Kev (Apr 17, 2008)

OK. folks, my apologies for not keeping this diary current.  No news is good news...  The LDN still seems to be doing it's thing.  If asked for a subjective take on my current status....  I'd have to say that I didn't find LDN a miracle 'cure'...  BUT that I'm at about 75 - 80% of where I was pre-illness. And that is saying a lot, considering where I've been; and how 'aggressive' my 'version' of this disease has been.  Currently, I typically go to the b/r only 1 - 2 times a day (when in the past I would commonly stop counting at 20)..  The only pain I encounter during the day is from taking my 5-ASA.
My energy levels are up, and seem to be staying there consistently. I don't have any bleeding issues anymore; and more importantly.. I haven't had any 'spontaneuos' episodes or sneak attacks since I started on the LDN. I also have ZERO side effects to report...  Had a few vivid dreams in the 1st few weeks, but those seem to have petered out and disappeared (SIGH!).
For those living on a restricted budget (like myself) the cost of LDN is not a problem.  I pay about $1 - $2 per pill (depending on the prescription - my 1st was for 12 week supply 84 pills cost me $90, whereas my refill are for 30 days @ $54).  I take one pill a day, after 10 pm. Now, its only been a few months...  things may improve or deteriorate over time. Like other things in life, there are no guarrantees...  But, if I was asked for a purely personal opinion; I would rate LDN a 9 out of 10, and recommend it IF the circumstances were right.


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## D Bergy (Apr 17, 2008)

Ditto on everything Kev said.  I would rate my recovery at 100% or maybe even better than I was, prior to my symptoms.  My depression has been gone for a long time now, and it almost has to be the LDN that is keeping it at bay.  

The supplements that initially rid me of it have been reduced to normal levels and could not be the reason anymore.  

I think I may be the first person in history that is kind of glad I got the disease.  It led me to resolve the worse problem of depression, and by intense research I found many useful treatment methods for many other conditions. 

Dan


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## BWS1982 (Apr 18, 2008)

Is LDN traditionally combative against depression, or is that personal experience Dan?

Would be a REALLY good med for Crohns if it could address both, since they often go hand in hand for many of us.


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## Kev (Apr 18, 2008)

Well, I dunno if I'd go as far as Dan. Course, I haven't reached 100% recovery yet... and may never.  I wasn't a depressed person before this disease, and I don't know if anyone reading my posts on here would categorize me as such post dx; but I will admit it's nice to see a light at the end of the tunnel AND it not be another oncoming train.  

Having said that, if one thinks about how LDN works... in the brain, not in the GI tract; AND the plethora of immune or brain related illnesses it fights, overcoming or alleviating depression could be a legitimate bonus. Hows that for potential side effects.  And, like, for folks with habit forming tendancies (there is a clinical name for it, but it escapes me at the moment) another of these 'terrible' side effects is that addiction to drugs, alcohol, tobacco, ...  all seem to be lessened/lowered.  For example, since taking LDN, I really don't enjoy smoking.  So if one has an 'addictive personality' (that's it!) the LDN is probably going to help you on that front too.  Talk about 2 for 1!!!


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## D Bergy (Apr 18, 2008)

I do not think LDN could be considered an anti-depression drug.  I am not aware of it being used in that capacity.  

It became apparent to me that my depression was related to inflammation.  It was not constant, and would come and go.  It started in my teens and continued until I started self treating my Crohn's in my forties.  The large doses of Ginger and Turmeric eliminated it.  I did miss taking it for a while and the depression came back quickly.  In my case, depression was kind of an early indicator of my Crohn's disease.  Of course there was no way to know that at the time.

There may be a few different reasons for depression, but mine was related to inflammation.  I do not think it would have mattered what I took in particular, as long as the inflammation was controlled by that substance, the effect would have been the same. 

I think in a round about way LDN is keeping my immune system working more properly, which helps keep the bad bacteria from coming back and causing inflammation.  That is how I think the LDN is helping me.

I am taking Krill Oil also.  I did not take this when my depression went away.  The Krill oil could help, but my dose is so low I do not think it could account for all of the improvement.  Omega three fatty acid is known to help depression if I remember correctly. 

There are quite a few diseases that have depression as a symptom.  I think this is quite often from inflammation.  The diseases are inflammatory in nature.

If you can control the inflammation there is a chance you can control the depression.  It also helps the Crohn's directly.

Dan


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## D Bergy (Apr 18, 2008)

To make the direct cause and effect thing more clear I will explain it as I think the process worked. 

I originally took larger doses of Turmeric and Ginger to block TNF activity.  This reduction in the inflammatory process helped my Crohn's symptoms to a degree and completely eliminated my on and off again depression.  The second effect was a complete surprise.

This bought me time to figure out a better treatment and what causes the disease.

Later on I reasoned the most likely cause of the symptoms of the disease is a bacteria, but was not sure which bacteria.  Later I had a better idea of which ones were more likely responsible.

Then I found a chemical that supposedly would kill acidic bacteria in the body without killing the other bacteria.  Acidic bacteria usually does not belong in your body.  I am assuming this is true, I do not know for sure.

I proceeded to take Chlorine Dioxide which does kill pathogenic bacteria as demonstrated by other application of use.

By killing the bacteria, I am assuming I have killed off the offending bacteria, and the secondary effect is the elimination of the inflammation caused by the bacteria.  My symptom elimination supports this hypothesis.

The LDN is keeping my immune system working more properly and therefore keeping bacteria that would be eliminated in a normal person, eliminated in me also.

I also do not drink milk which is probably where one of the two offending bacteria originated.  The other being the sticky E-Coli.

Everything I have taken or treated with, for this disease was for a reason or a specific property of the drug, food, chemical or method.

Some failed to make a difference.  Probiotics, Lemon Balm Tea, are two things that did little or nothing for me.  My frequency experiments were inconclusive or even negative, but later gave me a big clue on the bacteria in question.

That is how I went about it and the end result.  I may have something wrong, but I doubt I have all of it wrong.  It has worked for me so far, so until some aspect of my treatment and results fail, I will assume I was correct enough.

Dan


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## Sojourn (Apr 19, 2008)

Well, this is all good news.  If Humira does not work for me, I may try LDN before going to Remicade.


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## Kev (Apr 19, 2008)

I think diet, natural remedies, any number of things can battle depression. I even believe the 'effort/attempt' to battle it can work wonders. If one looks at the placebo effect...  and I don't think medical science can explain it, but they have to acknowledge it works.  I wonder, considering how LDN 'resets' the brain in regards to the immune response; and how it was originally dosed out to treat alcohol N drug addictions, that it MIGHT have a beneficial 'side effect' on addictions, mood, depression that science doesn't understand at the moment.  I admit, it's a pretty weak theory, and it hasn't the 'weight' of just the common sense rational that if one sees big changes for the better in their IBD, then their overall mood has to improve, correct?

Anyway, I don't try to 'force' LDN on folks...  it's too important a decision to be seconded to someone else. folks have to make that call for themselves...   However, if one is considering something like Remicade as an alternative...  here's a little food for thought.  What if you kept that as your 'last chance' alternative?  I mean, it has a pretty good track record, so one can feel pretty confident that IF you need to go there, it'll work. It avoids, for the moment, the whole 'if I start Remicade, I can't go off it so I can 'try' something experimental'.  Essentially, you aren't breaking a commitment to Remicade; you are just avoiding or postponing it, right?  

The trial of LDN does carry some risks.  First off, does your dr support you? Or will your dr. refuse, abandon you if you insist on trialing it.  Recently, a lady in Canada was 'fired' by her doctor for refusing to follow doctors orders even tho it took the woman 3 years to find that doctor.  There probably is a whole lot more to the story, BUT drs. closing the doors on patients can & does happen.  Do you want to risk that?  Do you want to undertake a trial like this WHILE you don't have a doctor?  Discuss it with your doctor first, then make your decision.  

LDN itself...  the other risk is that it doesn't seem to work overnite. If you aren't prepared or in a condition that would allow you to deteriorate while it was 'kicking in', then maybe the timing/circumstances just aren't right now. The gamble is that one's condition will slide downhill... and NOT improve. The numbers on LDN are really, really good.  Best I've seen of all the drugs out there... but they aren't 100%. There are no guarrantees. I would say it is wise to have a doc onside who can/will step in IF, after 2 - 3 months, the LDN hasn't worked, and you condition has deteriorated seriously. That is a legitimate risk... one you can plan/prepare for.  Don't just jump in, OK?

IF LDN does work for you, then what?  Good question.  Read the bit above about 'no guarranties'.  I've got a drug, with no appreciable side effects, it is a simple pill I take at bedtime.  It has a 30+ year pedigree in the medical community... at doses that make mine look miniscule.  I have no worries at the moment about side effects, long term adverse reactions.  I would put it on a par with a diabetic N insulin relationship (tho that's a bit of a stretch). I have a safe supplier of the drug...  and it costs about $1 - $2 per day for my treatment... (important since I have no health insurance coverage). The reason this is important is that I may have to take this drug from this point on.... indefinitely.  What's the point of finding an effective treatment if one can't afford it?  Like, Remicade wasn't an option for me purely out of financial reasons...  an indictment of Canada's health care system, but of little use to me.  IF LDN hadn't worked, what may have happened to me?

Well, I would have wasted 3 months, $90, plus deteriorated. then it would have probably been a round of pred, another taper, and into methotrexate. Metho has some serious potential side effects, long term health issues, and it has a lower success rate than LDN, with well known steadily diminishing results/returns.  Going in, one is pretty much guarranteed that one day it'll fail.  Yet the side effects/long term issues are all too real a risk, even if the odds of some are small.  I never crunched the numbers, but I would use the analogy of getting hit by lightning.  Very small risk, but if it hits..? Boy, oh, boy!


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## Kev (Apr 19, 2008)

Hmmm, I need to preface this post with a little back story (as my actor friends are used to saying)..  Yesterday, Friday...  well, I had a really rough afternoon. Not health wise.  Just, normally, my work as a school bus driver is pretty tame.  I drive a number of routes, and bus kids of all ages, from junior hi, hi school, and some elementary school kids.  All things being considered, my 'kids' are an above average group. Nice, polite, well behaved EXCEPTfor one run in the afternoon. An elementary school run, and it has kids from primary/kindergarten to grade 2. Easy, right? Wrong!

These are the least attentive, most disruptive children I've ever met. This one trip is the bane of my existence...  but into everyones life a little rain must fall, right?  Anyway, I don't know exactly what it was, whether it was the awesome forecast for the weekend, or that it was Friday, or whether it was that it was report card week; and now the pressure was off. Whatever the reason, yesterday these kids were at their worst. But, I got thru it. Then came my next two runs. Again, elementary schools, but these kids are normally pretty tame in comparison.  Tells you the risk of assumptions. For possibly the very same reasons as my 1st afternoon run, the next two were just as bad...  So, by the end of the day, I just wanted to come home N veg out.  Did that with no problem. forgot all my worries N my woes and napped, kicked back, didn't have a care or a thought in my tired head. Watched some TV, went to bed early, took my LDN, and drifted off.

Today, I get up, start my morning routine, and grab my pill calendar to take my 1st dose of 5ASA.  Staring back at me was my afternoon Friday dose. I must have forgotten it...  3  500 mg pills..   that's a pretty major slip-up. I had only taken a total of 2.5 grams versus my regular dose of 4.0 grams. I waited, fearfully, to see the results of yesterdays slip-up.  Bathroom time, I was 'stunned' by the results.  Using my homemade scale of 1 - 10, I hit an honest to God 10.  I literally can't recall ever hitting that before, probably because the last time was WAY before I even took note of such things. I have hit a '9' during my LDN treatment...  but that was the exception. most are between 6 - 8.  I use it, and my energy N pain levels to guage how well I'm doing on the LDN. Now, it could be a coincidence... a fluke of nature. Or it could be that after months of LDN, my health is continuing to improve. I really don't know...  but I would like to know.  So, I'm going to go out on a limb again.  Keep in mind my GI is away, and her fill in I wouldn't send a dog to.  I'm just not in a position to check with a doc I respect first on this, OK?  what am I planning.  A little experiment in reducing my 5ASA to see if my situation stays up at 10, or deteriorates.  If it declines, then I'll go back to full dose.  If it doesn't...  then I'll slowly ramp down on my 5ASA more. I wouldn't advise such a foolhardy venture to anyone else, but that fact that my LDN dose HASN'T given me (apart from today's BM) a 100% sign that it is working... leaves me a little uneasy.  And, the next step was to decrease my 5ASA starting this summer IF the LDN was working.. which it seems to be.  I'm just jumping the gun a little early..  I think i'll start at 3 g.

Wish me luck...


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## saidinstouch (Apr 19, 2008)

goodluck kev!  The 5asa never worked for me anyway so really the worst that happens is a minor flare in this.  Best case is you get off of it completely or at the very least get your dose cut to 1/2 or 1/4 of what it was before or something.  Granted im a bit skeptical that forgetting your evening dose was the cause of the change that fast, but who knows.  Gotta quench the thirst of the scientific mind!


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## Kev (Apr 19, 2008)

Thanks.  Just for clarity sake, it wasn't my nite dose (I keep those by the bed)... it was my afternoon dose..  Saw the change approx 21 hours after...


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## Guest (Apr 19, 2008)

good luck kev  sounds like you know your meds and your body as well as any doctor could.. so yeah, follow your instinct and give it a go, with the knowledge that you can always revert back to the full dosage if you need to.


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## D Bergy (Apr 19, 2008)

Good Luck to you.  There is a risk that it will not work out well, but it is the only way to find out. 

A ten!  Wow, I never thought you could get to a ten given your long history of Crohn's.  You must have most everything, gut wise, still intact.  

It will be nice if you find you can get along fine without the other meds.

Dan


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## Kev (Apr 20, 2008)

OK, day 2 of this 'experiment'.  And another solid 10 on my BM scale. Problem is that it's almost too solid a 10 (I'll try to avoid being gross, figure most of us know what I mean).  Now, I don't want to mess with constipation, or worse, impaction...  That puts me on the horns of a dilemma..  If this progresses, then I could end up constipated or impacted.  I could adjust my diet, go with more liquids (did that before) or add a little fibre. Problem with that is it means I made multiple changes to my regimen. An experiment is best done if you only make a single change at a time, and note the results.  If you make multiple changes, its' hard to attibute which is responsible for improvement or detriment.  So, maybe i'll play it safe, and ramp up to 4 grams...  see if my BM scale goes back down to 6's and 7's, w the occasional 8.  (that's where I was before I messed up my 5 ASA dose). If it does, then I'll repeat the ramp down... See if the numbers go back up.

The purpose?  well, stumbled upon this latest improvement by accident. The initial test seems to indicate that it is the 5ASA change doing it, and if I can repeat it, well, an experiment that one can repeat with same results is on its way to being accepted.  And, if what I have heard/read via here about 5-ASA is accurate, then it does make some rudimentary sense to me.

As an anti-inflammatory, I can understand the 'mechanics' of it flushing lots of fluid from the GI tract; which could, by design or accident, soften stool. If my LDN is working, and all signs seem to indicate it is, then my GI tract is most likely far less inflammed than it was, maybe indicating that my need of 5-ASA is less...  So, the relatively softer stools I've witnessed post LDN are not a sign that LDN isn't working to full potential, but "MAYBE" a sign that I currently am taking more 5-ASA than my current condition needs/requires.

Anyway, my 'revised' experimental plan is to ramp up N down on the 5-ASA, see if I can repeat those changes in stool... if that works, then I'll likely try adding a little more fibre to my diet...  My doc would shoot me if she knew.


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## Guest (Apr 20, 2008)

dont worry, kev, we won't tell her 

just a thought.. maybe rather than introduce more fibre into your diet, which as you say is another change for your body to adjust/react to, have you considered taking a tiny bit of lactulose, maybe even just once a day before bed? it might just soften things up without affecting your digestive activity too much.


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## Kev (Apr 20, 2008)

Well, the $64 question is...  what is lactulose?  It sounds frighteningly like the 'lactose' which I'm highly intolerant of.  Even as a filler in pills, it causes me a lot of gas, cramping and 'D'.  Maybe it's a UK term unfamiliar in North America?


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## Guest (Apr 20, 2008)

ah sorry kev, i assumed it was an internationally used drug, and i hadnt realised about the lactose intolerance. lactulose is a glucose-based stool softener, (sugar molecules actually) i suppose it comes under the heading of laxatives, but it is not full of harsh drugs, and tends not to cause the cramps and diarrhea that other laxatives do.. its very gentle, we use it here for young kids and the elderly.

bit more info here.. http://en.wikipedia.org/wiki/Lactulose

but if you have intolerance.. then maybe its not for you.


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## Kev (Apr 20, 2008)

Thanks for the info/input..  Think I'll pass (or more aptly 'not') on Lactulose. My knowledge of chemistry means I can't decipher whether galactose, a prime ingredient, is another name or a distant relative of 'lactose'.  And my overall goal is to decrease the pills I take..  seems counterproductive to take away 1 by adding others.


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## D Bergy (Apr 20, 2008)

I had some stool on the verge of constipation when using the Chlorine Dioxide also.  I think the body needs a little time to adjust to any change in the intestinal environment.

It is possible that when you remove your medication too fast, the body needs time to adapt to the new circumstances.  It has already adapted to having it in your system, and when it is gone it is a pretty big change.  A slow withdrawal may take care of the problem.

Just some random guessing.  That is a good idea to try keep your experiment free of other variables.  I have ruined a few, by doing too many things at once.  I really hate when I miss out a a learning opportunity.  The information may be of benefit later on.

Dan


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## Kev (Apr 20, 2008)

Hmmm, food for thought, Dan.  I dropped from 4g to 2.5g.. then up to 3g.  I can either pop up to 4g, or stage it to 3.5g, then 4g.  Decisions, decsions. I'm restricted to doing any stage moves in increments of 500mg (the pill dosage). I won't consider using a pill splitter, as the 5-ASA is supposed to be buffered.
Splitting them would compromise the buffering.  I don't know if only differing by 500mg would provide a dramatic enuff change to be conclusive.

Considering how 'solid' today's 10 was, and how 'solid' my fear of impaction (been there once, don't want to revisit that scene of destruction).. think I will flucuate in 1g increments/decrements.  I realize the yoyo effect could be hard on my system...  but figure it's a risk I'd prefer over constipation.


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## saidinstouch (Apr 20, 2008)

You can also try a magnesium supplement called calm which I use.  Its easy to adjust how much powder you take based on your needs and works great for me all the time.


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## Kev (Apr 20, 2008)

Thanks, saidinstouch...  "Calm", eh?  Never heard of it either.  Perhaps that's a local name...  vs a multinational.  I'll look around for it, but I think I'll go with my original plan for now, N see what develops...


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## saidinstouch (Apr 21, 2008)

http://www.thenaturalremedyonline.com/servlet/the-NATURAL-CALM/Categories?gclid=CPLY_rLG65ICFSFyYAodnUDHyQ

That should be a link to it.  Its just a powder that you mix with some luke-warm water and do what I call the plug-and-chug.  Now that I'm used to it I can just drink without the plugging and I just adjust up and down based on my bm for the day.  It usually keeps me nice and soft, but sometimes I take too much and get the runs so then I titrate down a bit.  If your experiment works for you, but you end up feeling a bit slow, this stuff works well and magnesium is good for you for other things as well.  Also a bottle tends to last me 2-3 months if not more since I only require 1-2 teaspoons a night.

I know you can get it for about $20-$22 usd in stores like whole foods for the 8oz bottle so the site prices are pretty good.  I prefer the raspberry lemon flavor as it actually is semi-refreshing.  I hope you don't have to resort to something like this, but I find the price to be acceptable compared to miralax and it seems better than taking stool softeners long term.  Also the results are really nice for me.


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## BWS1982 (Apr 22, 2008)

heh, mentioned the LDN to my doc at my Remicade appointment Friday, and showed him a printout of one the studies on it.....he didn't seem too fond of it, like most of you have said, it's not one the tradional docs are too fond of. He didn't even say he'd heard of it or not, but appeared as if he hadn't. Said I'd need to get it at a university or something, he wouldn't prescribe something like that...I think he's open to anything (he's always talking about the latest concepts "they" are working on), but there's just not enough wide usage/studies on LDN for Crohns I guess....?


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## Kev (Apr 22, 2008)

Hey, Benson... Assume you're just asking out of curiousity.  You can't do both LDN and immune suppressors..  they'd cancel out any possible benefits. Work against each other.  And, you know the downside of Remicade... you can't go off it THEN in reality expect any great luck going back on it (if you need to).  

Anyway, the playing with the 5-ASA continues..  Ramping back up seems to have worked as I anticipated... my BM scale dropped down to its normal, tho it took a little longer...  And, tho this is sooo slight, I'm not 'positive' it really is happening, it seems that the lower dose my 5-ASA is, the lesser my cramping is..  not that I have a lot since starting the LDN. Typically my pains coincide with taking my 5-ASA, but I can't swear as to whether thats from the 5-ASA or the food I eat before it..  I strongly feel it's the former, not the latter..  I eat about 5 'meals' a day, or more accurately 3 small meals N 2 mid sized snacks that are smaller than the meals..  the 'snacks' don't give me any cramps, but that MAY be because they are smaller, or that I don't follow them with 5-ASA..  I dunno.  I could be 'feeling' a phantom connection where none really exists...  but if I revert back to my analogy of 5-ASA N inflammed GI tract WITH ointment on a sunburn, then it sorta makes sense.  Initially, putting ointment on a sunburn hurts the most.

Not sure why the cramps peak at nite tho..

So, I'm going to dig out my executive decision maker (most of you refer to it as a nickel), decide whether to repeat this process just one more time Vs a couple..  And if the current results hold, then I'll begin to taper off 5-ASA in 500mg decrements every 4 weeks.  And see where exactly I end up, OK?


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## saidinstouch (Apr 22, 2008)

Sounds good to me and if your other problem starts returning, I really stand by the calm for great "relief" if ya know what I mean .


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## BWS1982 (Apr 23, 2008)

yeah, I asked him out of curiousity. In either the event that I never see any true remission out of Remicade early on, or, if the Remicade stops working in the future. 

btw, I know it's your diary, but in relation to my Remicade stopping, the doc also said that as far as Remicade just "stopping" after a couple years, he says yes, this can happen, but, he gets around it every time by either modulating the dose or the frequency. He says he's never had a single patient that Remicade worked for initially that had to go off it for its efficacy "expiring", for lack of a better term. Good news for me, bad news for the insurance comp.


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## saidinstouch (Apr 23, 2008)

It just gets to a point that you are wondering if its a good idea to be taking 10mg/kg every month when most people get 3-5mg/kg every other month.  And then you still have days at the end of the month where you really don't feel like the medication is working at all.  Hopefully it doesn't happen for you, but in everything I've been told or heard, getting 2-3 years on remicade before you start running into this issue is fairly nice.  You can stay on it of course, but it starts to not be so much of the miracle drug any more.


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## BWS1982 (Apr 23, 2008)

I have yet to see it as a miracle drug in the first place, it's just the only one that's been able to topple my recent flare to any degree....


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## Kev (Apr 28, 2008)

Well, I repeated my experiment.. same results.  Lowering my 5-ASA upped my BM scale.  Upping my 5-ASA lowered my BM scale.  Then I repeated it again. Yesterday...  Hows' that expression go?  Shit happens..  For whatever reason, my BM scale dropped to 3's...  and my gas % went off the charts. Needless to say I'm immediately going back up to 4g of 5-ASA, crossing my fingers, and saying my prayers.  You know why dr's use Guinea Pigs to experiment on?  Cause they're expendable!..  ME?  Not so lucky, and certainly not sooo cocky at the moment. When will I ever learn to leave well enuff alone.  Fortunately, my pain levels stayed where they were at, and my energy levels haven't deteriorated either. Here's hoping that this is just a fluke.


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## Kev (Apr 28, 2008)

well, before I had a chance to make any changes, conservative, moderate or radical... my body made a change all on it's own.  My 2nd trip (2 is now my typical #) to the bathroom resulted in a good old fashioned 7 on my BM scale.
WTF!!!  Guess I hit the panic button a little early.  Realize I'm looking 'pretty' foolish at the moment...  don't know if this is just the disease messing with my head, trying to scare the daylights out of me (which it did) OR (and this is far more likely... I just had an off day.. maybe a bit of food poisoning - maybe my cooking isnt' so hot, I dunno, I really dunno).
Anyway, just to play it safe, going to ramp up to 4g/day, and stay there for a while...  just see how it goes.


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## saidinstouch (Apr 29, 2008)

After you get stabilized at the 4g/day maybe try going down one more time and see since the likelihood of being off both times seems fairly low.  At least that would be my course of action .  Also glad to hear that your BM scale improved again.


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## pennywanna (May 7, 2008)

Hi, I am new here and was wondering why antibiotics are not used with Humira. I have my next shot Friday and have had 5 injections legs and stomach with no side effects, but I feel like I am getting worse and on cipro and flagyl. Does it get worse before it gets better?


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## katiesue1506 (May 7, 2008)

Hi Pennywanna... 

I just thought I'd let you know that when I was placed on Cipro for a little while, my docs took me off of the Humira. It was the same with when I was placed on Diflucan (not an antibiotic, but antifungal) I've heard that a lot of people stay on the antibiotics at the same time as the Humira, but my docs seemed against it.

Here's why I think they do it (and someone will most generally correct me on this):

I think that in order for the antibiotics to work correctly, you can not be on anything that will suppress the immune system (TNF modulators like Humira and Remicade or immunosuppressants like Imuran) This is because (i think) the antibiotics are developed to work in conjunction with the bodies immune system, and therefore would render them useless sans immune system. 

As to why the Humira is not working for you, I have no idea, but it takes some people a while on Humira to see a difference.. and you said you've had 5 shots.... so roughly 2.5 months.... I would think you would be seeing results by now, but everyone is different.

Also, there is a whole host of information regarding Humira here, all you have to do is click the "Search" tab at the top of this page and search for "humira". A bunch of threads should pop up.


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## pennywanna (May 7, 2008)

*Humira*

Thanks Katie, I have seen some of your responses to other questions and you seem knowledgeable on Humira.  I have had Crohn's since 17 and diagnosed at 32, I am 47 now and have been on everything, Remicade, and any other drugs, methotrexate... you name it, costs are covered because I have coverage and live in Northern Ont, Canada, most drugs are covered.  I am trying to think positive but it is discouraging everytime I think a drug will work, it fails. I have had 2 surgeries and my last was a nightmare.  I seem to be worse now that I am on Humira, still havent heard from my specialist, I am his first Humira patient so I have to do all the research, have been on many sites but from what I read, it should work by now, since March 28th til now, there should be some relief, but instead it is worsening.  I thank you for responding, it means more coming from some people who have the disease, no one can know what we feel.  We have a CCFC support group  here, and I will start attending to get more feed back.  How long did it take for Humira to work for you?  My last shot was in the stomach right side (doesnt bother me at all or hurt, just ended up with a headache)


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## saidinstouch (May 8, 2008)

You are right that somebody would come in and correct you Katie .  I don't know why doctors suggest stopping immunosuppresants while taking antibiotics so I can't enlighten you there.  But in general antibiotics work independently of the immune system.  Typically they work by blocking protein, DNA, or RNA synthesis in bacteria through a variety of mechanisms that I could not hope to explain since I am not familiar with most of them.  Take flagyl for example...it unwinds DNA in anaerobic organisms and physically blocks DNA synthesis leading to cell death.

TNF-alpha is a cytokine involved in cell signaling in a number of different pathways.  The only function it plays in the cell related to antibiotic function is that it helps promote phagocytosis allowing the cell to engulf waste and subsequently break it down.  It is possible that the body cannot break down the waste from antibiotics killing bacteria, but that seems like a stretch to me.  I'm not a doctor by any means and I still have a lot to learn about the immune response and cell signaling.

I wish I could provide more insight into why the humira isn't working for you as well penny, but each of us respond differently.  I don't feel the humira works as well for me as the remicade did, but I've been under a lot of stress getting into grad school this year and my humira dose is nowhere near comparable to the dose I was on of remicade (if you were to consider I was on 2.5-3x the normal remicade dose twice as often compared to taking the regular dose of humira and getting almost similar results).  I hope you find something that works for you.  There are other options if you don't believe humira is working right for you, but it also seems you have tried a lot of them.  I wish you well and hope you find something that works for you!


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## BWS1982 (May 8, 2008)

Saidinstouch, if one ends up not being responsive to Remicade (even at higher doses etc...) does that have ANY correlation to the potential efficacy of Humira? Are the likelihoods indepentent or related?


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## saidinstouch (May 8, 2008)

I'm not sure since remicade has the issue of an immunogenic response because it is chimeric.  I would assume not responding to remicade without this response  could correlate with humira and other tnf-a inhibitors being ineffective, but I really couldn't tell you.  I wish I could give you a better answer, but I just don't know .  Your doctor would be the best source of information on this subject and you can get a second opinion as well if you really want to be sure you trust the answer.


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## GregD (May 8, 2008)

Penny,
    My symptoms got worse when I started Humira as well. This is how my GI explained it to me. My Crohns had been active for so long that the inflammation caused permanent scarring of my intestines. The Humira was effective in reducing the inflammation and suppressing the active disease, but when my intestines began to heal, the scar tissue constricted and became brittle. I was hardly able to eat anything and was in a lot of pain, although it was a different type of pain than before I started humira. Basically, the permanent damage done to my intestines was exacerbated when the active disease healed. 
   I ended up having a resection to remove about 2 feet of the scarred tissue, which had narrowed to the diameter of a pencil.  It's been about 7 months now and I feel a lot better. I still take the humira, which seems to be working to keep the disease in remission. 
   You may want to ask your GI about this.

Hope this helps,
Greg


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## pennywanna (May 8, 2008)

Thank you, Greg and saidintouch.  I wish I found this site along time ago, you are all very helpful and it is great to hear other peoples trials and tribulations.  It is very frustrating and so hard to keep positive (sick of hearing that) when you can't explain your pain and apprehensive about going on trips and or making plans.  I was sent by my Gastroenologist here to Toronto Mount Sinai to see another specialist and said even though your response to Remicade failed doesnt mean Humira wont because it is another molecule.  So my husband kept getting me to try it, and I was willing but scared because the Remicade put me in the hospital by my 3 injection, it went into my lymphatic system and I couldnt move my arms even with 2 percocets every 4 hours... With the Humira now, my question to myself is, do I risk having the next Humira shot tomorrow, making it worse or even into an obstruction (100 times more painful than natural childbirth, I know..).  My GI called this morning and he is squeezing me in tonight at 6pm, he says I just may not be responding to Humira.  I had a scope 2 months ago...special arent they.... but I finally for the first time in 30 years saw it on a picture from the scope and it seems to not be contstricting or narrowing, but still I am grateful to anyone of their stories.  I needed all this info as my specialist and I are scratching our heads...why...

Thanks, Penny


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## Kev (May 8, 2008)

Hi penny... belated welcome to the forum.  Can't add anything to whats been said about remicade or humira..  Haven't gone tnf route (yet, and if the LDN keeps working, may never have to).  As for a pure wild assed guess as to why docs 'hesitate' to prescribe anti-biotics when someone is on immuno supressors..  I "THINK" it may be as basic as the thought that wiping out all of ones 'good' bacteria (probiotics) while their immune system is suppressed COULD leave them wide open for any opportunitic infections.
My limited understanding of medicine doesn't come up with any 'red flags' re immuno suppressors AND anti-biotics otherwise.  You might find some if you look at the specific anti-biotic AND the specific immuno suppressor, but the odds of there being a 'specific' adverse drug interaction I couldn't begin to calculate.

Anyway, from what I gather, you've been the remicade route, now giving humira a try..  Say that this is your docs first time using humira. Well, if it doesn't work out, YOU may want to look into LDN. There is a pharmacy in Toronto that will compound it...  BUT, another wild assed guess is that your doc MIGHT be too conservative to consider 'off label' prescribing. It is NOT unethical or illegal for a licensed doctor to prescribe a drug to treat disease that the drug wasn't originally designed or tested for. But the drug has long pedigree... AND the dosage used for IBD is really, extremely low, very safe.

Just a thought that I wanted to express... cause I sensed you're worried the Humira may not work..  I think you need to give it more time, and worst case it doesn't... THERE are alternatives out there. LDN is just one of them.


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## pennywanna (May 8, 2008)

*Ldn?*

Thanks Kev, but not sure what LDN is, but I do thank your for your input. I also know about VSL#3 but it is expensive...been to natural path, went the natural gluten free way, yogurt, Acidophulis, digestive enzymes, and all thru the years, if I went back to Cipro, it always went away....However my last shot I had a major stress factor, I was dealing with something that wont go away (an ex) and was dealing with it alone.  I know everyone is different, and symptoms vary with everyone.  I have an older sister, with Ulcerative Colitis and Severe crohns, but she bleeds, I dont (thank God?) I have the pain, and also my older brother has Colitis, my younger sister has irritable bowel and my younger brother was supposed to be tested, but wont let the doc's go where NO man has gone before....my uncles, one died of intestinal cancer at 49, and another Uncle is 60 and has irritable bowl.  So you think it runs in families? But of course.  There is a Crohn's and Colitis bbq at M&M's meat shops,, dont know if they have them in Halifax, but I live in Thunder bay, Ont,  and I am going to donate and have spread the word.  Saturday the 10th.  No matter with all the drugs, it helps some, a cure would be amazing.  Thanks for your thoughts and input.

Penny


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## Kev (May 8, 2008)

Well, I'll try to be brief.  LDN is acronym for Low Dose Naltrexone. Naltrexone is a drug thats been around for decades.  In typical doses its used to treat Alcohol or opiate addiction.  An independant study last year (spring of 2007) tested it in very low dosage (so low that the pills have to be special made) to treat IBD.  Results were posted in a 2007 issue of the American Journal of Gastroenterology.  They did so because patients given Low Dose Naltrexone (LDN for short) responded with remarkable success. 89% of patients showed marked improvement over the span of 12 weeks. The photos of some of the scopes performed on the test subject is truly remarkable.  I think the lowest the numbers on this drug (tho a small test) was 60%.  Even these lowest numbers compare favourably to traditional meds...  AND..  the 'side effects' of Low Dose Naltrexone.. 'vivid dreams'. I could go on and on (ask anyone on here).  Thing of it is that tho I use it, making decisions about how to treat 'your' illness is your decision to make.

I played guinea pig... so did Dan.  Seems we both 'lucked' out, and I hope it continues to work..  I once before thought that this disease was behind me AND I don't want to go thru the turmoil of any further 'false hope' thingies. so, I don't look too far down the road, I just take a pill a day, fingers crossed


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## saidinstouch (May 8, 2008)

I would support kev's idea in trying LDN next if the Humira doesn't work for you.  If you've gone a lot of other routes and your doctor knows how many things you've tried he/she might just decide it is worth letting you test out the LDN.  If I were a doctor and had a patient not responding to conventional therapies and diet modulation wasn't working I'd definitely let them go the LDN route IF and ONLY IF it was their choice and they knew and accepted the potential risks involved if the treatment doesn't work for them.  Meaning a risk of surgery, abscess/fistula, disease progression, and any of those other issues we have to always worry about.  

If Humira stopped working for me I might try to convince my doctors that LDN is a good option.  I'm lucky because I'm going to UCSF next year and they have sponsored/participated in at least one of the LDN trials so I could probably find an IBD specialist at the medical center there willing to prescribe it.  I can't remember if it was a trial for MS or IBD, but regardless UCSF is probably one of the most progressive treatment centers in the US so I will have access to great doctors there.

Essentially, LDN is a great option for people unwilling to goto MTX when we get poor results from other less harmful treatments.  If you are willing to risk a 3-6 month period of not taking conventional meds, then it truly sounds like a great choice.  You should go through and read all of Kev's posts in this thread if you haven't already to get an idea of what to expect.  This is a great resource for anyone considering LDN now or in the future!


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## Kev (May 22, 2008)

LDN and me..  I resumed tapering my 5-ASA... went to 2.5g (down from 4g) a day... held there.  Using my pain levels, energy levels, and homegrown BM scale, everything was good.. better in fact.  I literally was averaging a 9 each N every day.  Then today, w/o warning.. my BM dropped to a 5, AND (shock) I am losing blood again.  My immediate plan is to jump, not ramp, up to 4g.

And pray..  This is the third time my health has hiccuped.. no explanation.
A theory that messing with the 5-ASA is causing this latest episode. I hope that theory holds up..  Or at least going back to 4g will stop the bleeding.


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## Nancy Lee (May 22, 2008)

Perhaps I missed something here Kev but why are you cutting back on the 5 ASA?
I am on a maintenance dose of one 800mg tablet three times a day Asacol.
If I start to flare the gastro doc said to up it more until it (bleeding) subsides.

I've been on it about 10 years and he has not wanted me to cut back.

Maybe you could explain more as to why the cut back, and yes, I would jump back on the higher dose if you have blood.

Hope it turns around for you.


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## Kev (May 22, 2008)

Well, on LDN I topped out at about an 8 on my BM scale, and I was still having pain... everytime I took my 5 ASA (tho worst at nite, per typical). My pain scale was diminished, but not gone.  Then, I had a freaky, hectic day.. and at the end of it I noticed I'm missed 2 x 500mg 5-ASA pills (Salofalk). now I expected a setback.. but instead, things improved... my BM scale came close to a 10... very close. and my pain was less.. But I opted to go back to full strength...  but, when I did, everything reverted back to where I was... 8's and pain with meds.  That got me to thinking (I know, dangerous for a fellow my age to try new things)..  So I experimented..  dropped back to 3g.. I improved.. back to 4g, deteriorated.
Repeated this... but then had a scary incident (much like this one, only not as serious)..  Went back to 4g..  things settled.. right back to 8's N pains (tho not as bad as pre LDN)...  So, a while back, I got my courage back (or just got foolish again...  time will tell.. but odds are its the latter, I know)..
Resumed the experiment..  went to 3g, stayed there, things improved, no bad scary incidents at all...  Then, start of this week, I dropped another 500mg... down to 2.5g.  All went A-OK ... that is till today.  Anyone else of the opinion this ol fool needs his head examined?  Who is a vacuum expert?

Anyway...  I'm back up to 4g.. or at least in the process.. had 2g already, and i'll have the rest in me by bedtime.   and, no more experimenting, least not till my GI is back... barring she doesn't fire me when I tell her all of this.

Trying to stay positive...  trying not to go into a mental maelstorm over my last trip to the bathroom..  it was barely a 3...  but at least no more blood.


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## Kev (May 25, 2008)

Well, here it is Day 4 since my minor relapse on Thursday...  I am back at full strength 5-ASA..  4g.  Friday, no real improvement, but the bleeding stopped. Saturday.. bleeding again, and still no improvement. Today, no bleeding so far, but no sign of improvement. 

Now, playing with your meds is stupid.  Playing with your meds while in the midst of major new stresses is downright suicidal.  Instead of getting my route on a permanent basis, guaranteeing me both a job N union status, my route was pre-empted by a union driver with seniority.  That was a big stressor.


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## Nancy Lee (May 25, 2008)

Hey Kev!

C'mere.....


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## BWS1982 (May 25, 2008)

All the best Kev, I know what you mean about relationship troubles, to an extent.


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## Guest (May 25, 2008)

so sorry to hear all this kev. try & concentrate on getting your health issues back under control for now, and maybe the relationship gap will heal itself - the early days of a split are raw and surreal, then the enormity of the loss hits us. there may well be a way back for the both of you. ((big hugs)) kev.


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## D Bergy (May 26, 2008)

Hang in there buddy.  You have been through worse and came out of it fine.  

Sorry things are going South at the moment.  You will get back on track after a while.  It just is a matter of time.  Perseverance is your strong suit. 

Dan


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## KCMike (May 26, 2008)

Hey Kev,

We know you are stronger than that. It's just your IBD talking. It's another battle that you'll eventually win.


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## Kev (May 26, 2008)

Well, first things first.  Thanks to all for the kind words.  On the good news front, I have strung 2 days together with no bleeding.  On the bad news side of things, now that I'm back at 4g a day, tonite I've got such a migraine... 
no other news, good or bad, to report at this time.  Not that I am expecting any...  and that isn't being negative..  it's a realistic statement that such things take time.. change in stages..


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## Maggie-Muffin (May 31, 2008)

Hi Kevin,sorry about your relationship problems.But am glad that the new medicine is helping you feel better.I am starting Methotrexate next week,my GI choice for now.


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## Kev (May 31, 2008)

Well, it looks like this was a little hiccup, for want of a better definition. I can't take a peek inside there, but the bloodloss may have been from something other than IBD.  Internal hemms are a possibility. Whatever it was, it is turned around.  And, if it was a flare, then I guess my expectations (tho I really shouldn't have made/assumed anything) were off the mark. I shouldn't expect LDN to keep me symptom free, flare free, etc..
I should expect it to keep my immune response from going haywire, to deal with flares in a normal way, which may involve flares then slow to heal issues..  It may be premature, but it does appear to be healing at the mo


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## BWS1982 (Jun 1, 2008)

sweet news Kev, hiccups are better than downward spirals.


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## Mazen (Jun 2, 2008)

http://www.hmc.psu.edu/colorectal/research/naltrexone.htm

The trial for LDN and Crohn's was announced 2 years ago; can anyone find the results? I couldn't find anything on this?


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## D Bergy (Jun 2, 2008)

They were still looking for participants the last I heard.  I think the study has started, but I am not sure.

Dan


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## Kev (Jun 2, 2008)

I think the one that was announced 2 years ago I 'believe' was the 1st, and it was published in spring of 07..  it was only 14 weeks or so long..  Now, I may have that bass ackwards..  When I looked at the published info, the "dates" were the least thing I was interested in..  And, until the numbers were totaled and the results published; doubt if they'd be any interest/motivation for a 2nd study.  But that's just another WAG too


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## Kev (Aug 5, 2008)

Hey folks..  Flies time when you're having fun..  (or something like that???)

It's been a while since I updated this, lots of stuff going on..  But I realized I have been a bit remiss..  The LDN has apparently been doing its thing, and it has been faced with my being subjected to major stresses the past 7 months, a number of them off the scale.. and to top that, a family matter that has me literally sleepless, but at a loss to do anything about. And the verdict..  NOT only have I not had any relapses the last few months, but in the last 3 weeks, my personal bodily functions have completely normalized. I didn't want to say anything until "I" was totally convinced, but on my own home grown bathroom scale, I've been consistently a 10 for 3 weeks now. I really never thought I'd see that again, at least without major surgery.


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## Guest (Aug 5, 2008)

i'm sorry to hear your troubles are still causing sleepless nights Kev, but thankfully it looks like your Crohns symptoms are one less worry you have to think about right now. whatever you're doing, keep it up - and hopefully everything else will fall into place soon, too.


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