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

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Ulcerative Colitis
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Posted 7/20/2011 1:49 AM (GMT 0)
badslinke,

So glad you're doing well.

And that you found your own protocol that works for you! :-)

Posted 7/20/2011 4:11 AM (GMT 0)
Ya it feels good :-) Thanks InSoFla!
Posted 7/20/2011 10:27 PM (GMT 0)
badslinke,

Now, don't forget about us now that you're doing better, haha.

Keep us in the loop on your progress, ok :-) .

Posted 7/21/2011 12:09 AM (GMT 0)
absolutely haha.

My plan is to let this regimen run until I hit a full remission, defined as several weeks of 1-2 beautifully formed BMs a day, energy, no joint pains, etc. Completely symptom free for an extended period of time.

Once that happens (if it does...), I fully plan on starting my own thread on this site that details my experiences and how I finally managed to get over it all. If it really works out well, I actually want to toss up my own blog that details everything I've learned from colitis, medically, physically, socially, and philosophically. I feel like if you've really found a way to beat a disease as awful as this, you need to share. It is a responsibility.

But I sure won't be sharing anything on a large scale until I am well in the clear. That's going to take some time.

Had a great day today though! Only 3 BMs after the standard morning movements, with some energy to spare after the full work day. I did the first bit of serious exercise I've done in a long time yesterday. I'm so sore it's ridiculous, but in a good way :-)
Posted 7/21/2011 11:45 AM (GMT 0)
badslinke,

You can count me in your cheering section, LOL.

:-)  

Posted 7/22/2011 6:31 PM (GMT 0)
Hello from St.Petersburg,

I goto my Neuropathic doc thursday, she is happy to let me try LDN. i will give her the info about using it with Hashimotos thyroid, etc. INSOFL recomended I definately not get slow release and start at a lower dose. What filler should I be trying on the oral? Also I'm pretty sure I will ahve evedry side effect in the book, so at what point should I try the transdermal. I assume the 'Skip' you reccomended I speak with is Skip at Skips pharmacy in Boca? Thanks so much, like I have read on so many posts..this is a daily nightmare diagnosed 2 yrs ago Dec 2009, thought I had guts of steel :(. Now I am having to try a wheat/gluten free diet and that is so not fun! Anyhow, I have high hopes in seeing results from LDN, cant wait to get started!
Posted 7/22/2011 8:00 PM (GMT 0)
jray1971,

It's good you are already gluten/wheat free however, if you could also do dairy free it would certainly help you.

Almond milk is pretty good and is dairy free.

Yes, Skip's of Skip's Pharmacy in Boca Raton, FL is THE one to talk to, especially as your other involvements of UC + Hashimoto's etc.... He could also guide you as to fillers. My recommendation is hypo-allergenic filler to make sure you don't have a reaction to the filler (one more complication you do not need). As far as timing and how long you should give it, given your conditions, I think you should ask Skip, he's really the expert on this.

Let us know what happens.

Good luck.


 

Posted 7/24/2011 3:28 PM (GMT 0)
Hi!

Here is my update...not sure if LDN is working, I also suspect I am reacting to the filler? 

Day 8, I have been having a bit of a headache almost everyday now.  My stools are more loose, runny D...then alternate between a little more formed stools.  Still a little blood sad . 

 

Question:  Do others feel extreme tired in the morning like around 5:00am - 6:00am?  Currently take LDN at 9:30pm.  I feel like it lingers in my system for some time in the early am hours right when I need to get to work.

 

Would having the acidopholus filler make a difference with the headache, and D that I'm experiencing?  I would perfer to take the capsules at this point.  I do have good results with VSL3, and thought maybe the acidopholus would be benefical for me. 

I also need to be patient with LDN to give it time to work, however want the correct formulation for me.

Love the more energy though!  Having a great hot summer here in the upper mid-west, enjoy boating, sunning (getting more D naturally) yes!

I'm being hopeful! wink

Posted 7/24/2011 11:19 PM (GMT 0)
What filler are you using Hopeful? Avicel seems to be the most common irritant for a lot of people; next up is lactose, and then calcium carbonate. The reason most pharmacies don't use acidophilus as a filler is because fillers are supposed to be inert. Acidophilus is a live, moving bacteria, effectively the opposite of inert.

If you're not sure about fillers, you can try either the transdermal or liquid versions. Liquid LDN is just pure naltrexone powder dissolved in distilled water. It's about as pure as you can get, but it can be hard to dose accurately.
Posted 7/24/2011 11:39 PM (GMT 0)
Hopeful4uc,

It sounds to me like you may be having a reaction to the avicel filler. Typical reactions are: headache, stomach ache, and liquid D.

I think you may want to switch to hypo-allergenic formulation of oral LDN or to Transdermal LDN. However, you should be aware that many UCers and Crohns patients have issues with proper absorption, so ideally Transdermal is best since it bypasses the gut and gets directly absorbed into the blood stream. That's the reason I always suggest Transdermal LDN, in order to avoid any problems with fillers, and absorption issues.

Is it possible for you to call the compounding pharmacy where you got the LDN and tell them you've having a reaction to the avicel  and need to try another form of LDN?

Let us know how you make out.

Posted 7/25/2011 2:30 AM (GMT 0)
Thanks for the suggestions.  I will start working with my current pharmacy and see if they can try something else or get the transdermal LDN formulation.

I did have an interesting day today.  Very limited D today, I did start taking very little of metamucil and l-glutamine and I had some somewhat former stools, limited blood...interesting and my tummy has been more quiet today. 

Anyway, I will get an adjustment on the LDN, will keep you posted.

Hopeful that this is working! :-)

 

Posted 7/25/2011 12:34 PM (GMT 0)
Hopeful4uc,

 I did start taking very little of metamucil and l-glutamine

I'm a little confused did you reduce, introduce, or increase your intake of l-glutamine?

L-Glutamine is great for colonic repair. I would suggest upping it to at least 15 grams a day. Here's a good quality brand you can get which is cost effective:

http://www.nutrabio.com/Products/glutamine1.htm

Let me know what happens when you call your compounding pharmacist.


Posted 7/25/2011 5:06 PM (GMT 0)
Thanks for your response INSOFL.  I see my Functional doc this thursday and my gastro doc wants to see me next tuesday.  I am a bit nervous of his reaction as he doesnt keep up with preventative medicine.

I am eager to try the LDN, and absorbtion will be an issue and I obviously have leaky gut as well.  I will contact Skip to find out about the dosage for the transdermal as well as the oral.  I really want to try one or the other!  I will have a urine absorbption test on thrusday this week to see where I'm at.

With everything I am doing to try to heal I often wonder how I will tell what is working when and if something actually does.  Obviously ntohing I do diet wise seems to make a difference.  I know its crazy, but I cheated my diet over the weeknd and had a big greasy normal breakfast out and felt great most of the day..no urges to go.  What gives? Lol tongue

Posted 7/25/2011 10:20 PM (GMT 0)
jray1971,

but I cheated my diet over the weeknd and had a big greasy normal breakfast out and felt great most of the day..no urges to go. What gives?

I hope it isn't so for you, but sometimes it takes 48 hours before it "hits" you...

Don't be nervous about your doctor's reaction, if he's open to it he will be and if he's not he'll probably tell you LDN is not the standard of care and there's no scientific proof. If he does that, you  can show him Dr. Jill Smith studies with Crohns patients, which was published in their Gastro journal:

http://www.ncbi.nlm.nih.gov/pubmed/21380937

print it out and bring it with you, what do you think?

Since you know you have absorption issues and leaky gut, then you should definitely do the Transdermal LDN, it's just a question of dosage, usually it's @ 4.5mg, but your hashimoto's you'd be best off asking Skip as he's the expert.

Good luck and let me know what happens when you see both doctors.

Posted 7/25/2011 11:28 PM (GMT 0)
InSoFla
I am slowly introducing the L-glutamine.  I did take the suggested dosage of 5g and I had the runs, but that was before starting the LDN.  So now I'm taking it slowly starting out with 2g for a few days and increase slowly. 
But exciting news today! 
I only had to go 2 x today, more firmer stools minimal blood no D   turn  it was like wow, it's starting to work.  I think the LDN is starting to kick in turn YES!  I know this will work.  I'm still eating mostly cooked vegies, protein, minimal rice for now.  My tummy has been nice and quiet, I still have my energy, however when I'm tired I will rest to help my body heal...this is amazing.  This is like a story unfolding before our eyes.
I do have a little hard time sleeping every now and then, but I think that will pass in time. 

Will keep everyone posted on the healing journey!

I wish more UC people would try this before the Remicade, Humira...I wish I did.

 

Posted 7/26/2011 12:20 PM (GMT 0)

INSOFL,

Thanks for the response.  It just seems like things I eat immediatly act as triggers for me to have to run for the hills.  I realize Im not moving what I am currently eating so it does make it confusing to chart what I am reacting to, I just know that I can swallow something and it triggers an urge.

I did talk to Skip yesterday and suprisingly he told me to go straight for the 4.5 oral dose, that it should help my Hashimotos.  He said the main reason people taper up to 4.5 is becuase of the sleeplesness, but I am going to tough it out and go straight for the theraputic dose.  I will double check with him about the transdermal again.

I am totally unhappy but so eager to start the LDN, I hope I'm one of the lucky ones it works for! Do you know if some people have noticed relief sooner then 6 weeks?

Posted 7/26/2011 6:39 PM (GMT 0)
Hopeful4uc,

Glad you seem to be doing better. But if your continue to have D, I would recommend you switch from the avicel LDN to the hypoallergenic one.


This is like a story unfolding before our eyes.

Yes, it's great and I look forward to hearing your progress.

I wish more UC people would try this before the Remicade, Humira...I wish I did

That's exactly the reason I keep posting to help those who might want to try it before remicade, humira. :-)

Posted 7/26/2011 6:41 PM (GMT 0)
jray1971,

So glad you got to speak with Skip; he's very kind and very helpful. I'm glad he was able to answer all your questions.

Keep us apprised of your progress.

Posted 7/27/2011 5:05 PM (GMT 0)
Slipped on my diet, oops and does produce D, I shoud know better.

Back on track today! 

Oh I check with the Pharmacy in regards to the filler that is in LDN that I have it is methocyulose not avicel.  They stated that this is the most hypoallergenic and reported that most people do very well.  So, not sure if I need to worry.  My headaches have subsided a bit, I just think I'm doing way to much, and not allowing rest for my body to heal.

Has anyone had the methocyulose as a filler and had problems?

I'm on day number 12 I think, and I only have D in the morning and then semi-formed stools.  Minimal blood though, so it's doing something.

My energy is so much better though, but I do need to remember to rest yeah .

I will keep you posted.

Posted 7/27/2011 7:07 PM (GMT 0)
Hopeful4uc,

It's sooooooooooooo hard not to slip up, I know.

But you'll get back on the horse and be ok again soon.

May I suggest you call Skip's and ask them about the filler you were given? It's just that many compounding pharmacies just don't have as much experience as Skip's, so it would be a good way for you to check and see if you are indeed not having a reaction to it, no?

Let us know.

Posted 7/28/2011 3:28 PM (GMT 0)

Hi InSoFla:
I checked with Skips pharmacy and they do use the same filler (Methocyulose) as their hypoallergenic filler for LDN, so I feel a bit more comfortable.  I just need to give this time.  I did find out though, that when I can sleep in to at least 7am, I do so much better.  I've been taking some time off of work to enjoy summer and help my body get the rest it needs. 
Day 13 now, this am only a little gas with a little watery stool, not much...that has been getting better everyday.  My energy level is still up, and I have noticed that my complexion has improved too, two great benefits.
More to come on this journey of healing!

Posted 7/28/2011 5:09 PM (GMT 0)
Hopeful4uc,

I'm so glad you called Skip's and are now reassured as to the filler.

Sounds like you are doing a little better. Finding out  about your body and its reactions is certainly a journey,lol.

Let us know how you keep doing :-) .

Posted 7/29/2011 5:23 PM (GMT 0)
ok, I had a normal stool this morning!  Yes!  This is working... smilewinkgrin

Now just continue with the diet and work on trying to get more rest.  I do better when I can sleep in, I think I will try to see if I can start work at 8:30 unless I have a early meeting...that should give me more rest!

 

Now I have a question.  What is the protocol on how long to stay on LDN on a daily basis?

I think I saw at least 6 months is that correct?  Then taber down to every other day and so on.

Soooo excited!

 

I so encourage UC and Crohns individuals to try this because it's working and remission is the goal!

More to come!

Posted 7/29/2011 5:45 PM (GMT 0)
LDN is on its way, should be here by Tuesday!! I hope so much that I'm in the 80% that is helps!! It will make for a much nicer wedding ceremony in September! In the meantime I am going to bond with my fiance over a FT date saturday and sunday night. It must be true love!! :)
Posted 7/29/2011 7:46 PM (GMT 0)
Hopeful4uc,

So glad to hear the good news: you're doing better and better!

Now I have a question. What is the protocol on how long to stay on LDN on a daily basis?

I think I saw at least 6 months is that correct? Then taber down to every other day and so on.

 

Its' up to you. Many do stay on for only 6 months and then stop. However, since it's so cheap, and it boosts your immune system and does no harm, I intend to stay on it forever. I feel I have nothing to lose and everything to gain by doing that.

 

I so encourage UC and Crohns individuals to try this because it's working and remission is the goal!

 

I couldn't agree more .

 

Keep us apprised of your progress :-) .

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