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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » HELP...first dose a disaster


03-01-2014, 10:45 AM   #1
jillybkul
 
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HELP...first dose a disaster

Hi All, so I took my first dose 1.5 mg of LDN. I do not normally get up at night to use the bathroom, but last night....let's just say I am cleaned out enough for a scope! I was up all night, almost total watery stool..ALL NIGHT!! Is this normal for a first time? Is this just a coincidence? Help please. I don't want to give up after 1 dose, but I can not do this ever again.... anyone? I was also really nauseous. More than normal, but still wonder if it's normal.

thanks,
Jill

Last edited by jillybkul; 03-01-2014 at 03:48 PM.
03-03-2014, 10:59 AM   #2
jillybkul
 
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Hmmm, I guess no one can help??
03-03-2014, 11:59 AM   #3
Pam48
 
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I have never taken LDN but is that listed as a side effect?

I'd call my doc and let them know that just sounds really bad.

I hope you feel better soon.
03-03-2014, 12:28 PM   #4
Trysha
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As a drug antagonist LDN is reported to be mostly free of side effects (see FDA reports) .Its mode of action is reported to be within the brain centre.
Your symptoms sound more like a flare and the LDN may be an incidental factor.
It would be a good idea for you to get in touch with your doctors about this since you may need some help getting things under control.
Hopefully some of the people on this website who are taking LDN may come along to relate their experiences with it..
Kev comes to mind in this regard.
Feel better soon
Hugs and best wishes
Trysha
03-03-2014, 01:52 PM   #5
jillybkul
 
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As a drug antagonist LDN is reported to be mostly free of side effects (see FDA reports) .Its mode of action is reported to be within the brain centre.
Your symptoms sound more like a flare and the LDN may be an incidental factor.
It would be a good idea for you to get in touch with your doctors about this since you may need some help getting things under control.
Hopefully some of the people on this website who are taking LDN may come along to relate their experiences with it..
Kev comes to mind in this regard.
Feel better soon
Hugs and best wishes
Trysha


Hi Trysha,
I have been in flare mode for over 6 months now, and they can't seem to stop it. The ONLY good part is that I don't usually get up overnight. I am between GI doctors ( I NEED a new office ) so I don't have good expertise medical info right now. MY family doctor suggested LDN. I don't know, maybe I'm just supposed to be miserable forever Starting to feel that way. Thanks for the note thou,

jill
03-03-2014, 04:15 PM   #6
Trysha
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I am hoping Kev will provide some input for you.
His experience with LDN seems to have been less than immediate with LDN but efective in the long run.
You will not be miserable forever, there will be something to help and LDN may be an answer.Your family doctor is forward looking.
It may help you to talk with him.
Never give up--never give in....
Hugs
Trysha
03-03-2014, 04:18 PM   #7
Trysha
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Low Dose Naltrexone Studies and Links
Here are the two studies conducted by Pennsylvania State:

Low Dose Naltrexone Crohn's Study One
Low Dose Naltrexone Crohn's Study Two
Low Dose Naltrexone in Children

Other links to the same data:

http://www.ncbi.nlm.nih.gov/pubmed/17222320

http://www.sciencedaily.com/releases...0902133047.htm

These links to information were posted by Duskycat previously---- you may find the information helpful
Trysha
03-03-2014, 05:37 PM   #8
Kev
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Hi Jill

Sorry it took so long for me to spot this....

Couple of thoughts.... LDN is a neurologic.... it wouldn't cause immediate diarrhea of this sort. Seems like you are flaring (timing is coincidental OR stemming from stress or worry about trying LDN possibly).. The dosage of LDN you are on is probably not enough to get the desired AND needed 'rebound' effect. If you don't use enough to trigger that effect, I 'believe' LDN won't work. I'm not a medically qualified person, absolutely no training, so it is just my... layman's... opinion. All of the studies on adults used 4.5 mg dosage. At that dosage.... you CAN and SHOULD expect your condition to initially worsen for the first couple of months.... and then an incredibly slow and gradual change for the better. That is what I tell folks... my initial intro was very slow, I got much worse before it all turned around... but it was a very stressful, scary several weeks... with no guarantees that it will work. But, the odds are in your favour, the positive results are extremely good with LDN... AND if it does work, and you can maintain a good supply of LDN, then everything should be behind you... I've kept my disease firmly in check since I started taking LDN in late 2007.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
03-04-2014, 12:52 PM   #9
jillybkul
 
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Hi Jill

. At that dosage.... you CAN and SHOULD expect your condition to initially worsen for the first couple of months.... and then an incredibly slow and gradual change for the better. That is what I tell folks... my initial intro was very slow, I got much worse before it all turned around... but it was a very stressful, scary several weeks... with no guarantees that it will work.
I don't think I can stand to be any worse. When you say 'worse', what kind of worse? I can deal with sleep issues, but I can not deal with worse diarrhea. I can handle vivid dreams, but NOT throwing up all the time. Are those things that will get worse? I am serious when I say I don't think I can handle worse. My job is in danger as it is, and I HAVE to work!!

jill
03-04-2014, 12:54 PM   #10
jillybkul
 
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You will not be miserable forever, there will be something to help and LDN may be an answer.Your family doctor is forward looking.
Never give up--never give in....
I think I have already given up.... ;(
03-04-2014, 08:52 PM   #11
Kev
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Jill

I lost a 20+ year career... my beautiful home, the bulk of my retirement savings, and of course... my fiancé. That was to Crohns... but I didn't lose my life. Then I found LDN.

I 'know' that the thought it can get worse is scary... thing is, if you opt to do nothing it will get worse.... (I frequently went to the bathroom in excess of 2 dozen times a day).. I had multiple operations... I was losing a liter of blood every 2 - 3 days, and tossing clots out of my .... well... you know... the size of silver dollars... Or how about losing 77 pounds in less than 3 months... because the only thing I could tolerate (barely) was a glass of water 3 times a day to take pain meds with...

My point? This disease will do whatever it wants, whenever it wants, and will get as bad as it possibly can... beyond your worst imagination... unless you find a way to stop it.

LDN can stop it... Safely.... One pill at bedtime... No side effects to lose sleep over...

BUT... you have to get through the early rough patch...OR find another treatment option
03-05-2014, 09:52 AM   #12
jillybkul
 
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. but I didn't lose my life. Then I found LDN.

I 'know' that the thought it can get worse is scary... thing is, if you opt to do nothing it will get worse....
My point? This disease will do whatever it wants, whenever it wants, and will get as bad as it possibly can... beyond your worst imagination... unless you find a way to stop it.
LDN can stop it... Safely.... One pill at bedtime... No side effects to lose sleep over...
BUT... you have to get through the early rough patch...OR find another treatment option
Kev, will the diarrhea get worse before it get's better? My system is really sensitive that's why we are starting at such a low does, then working up to the 4.5mg dose. I get what you are saying, but I am sensitive like my system, and..well....doesn't matter.... I also suffer from anxiety/panic attacks, CFS and depression. I have heard that LDN will help with that also?? Do you know if there are studies about using LDN and MMJ together? The MMJ for the nausea?

jILL
PS not that it really matters BUT my husband just had a kidney transplant, my no 17 yr old son has an artificial aortic heart valve and a pacemaker. So stress is just common at my house.

Last edited by jillybkul; 03-05-2014 at 09:54 AM. Reason: addition of information
03-05-2014, 11:45 AM   #13
Trysha
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You certainly have a lot on your plate-------must be very difficult for you.
I really hope some solutions are possible for you.
Hugs and best wishes
Trysha
03-05-2014, 04:42 PM   #14
Kev
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Stress is a killer. I wouldn't have become ill if not for the stresses. I thought I could deal with stress.... by denying it. Think about that.... stress was my 'tipping' point. I could've avoided all of this.

One way to get through it is... perspective. Your family has had a lot heaped on them, but it seems like you managed through... your husband 'got' a kidney, your son 'got' the aortic valve... If you look at them from 'just' this end, they are obviously 'victories'. You know there was a lot more to it.... a lot of worry, sleepless nights, unanswered questions.

When I was five, the 'doctors' said my Mom had less than 6 months to live. All of her life she was plagued with major health crisis... one after another. Time and time again all of the 'experts' told her she didn't have a chance... but she never lost her ability to see the silver lining... to be optimistic... to see the part of the glass that was 1/2 full. She always looked forward to tomorrow... Mom lost her last battle... over 50 years after they told her she didn't have long to live... I guess over half a century isn't long in archeological terms....

I "CAN'T" predict whether your IBD will get much worse.... I can commiserate. I know how bad it was for me... All I can guarantee you is that LDN truly offers all of us HOPE!
04-21-2014, 08:17 PM   #15
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Why does it get worse before it gets better on LDN?
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