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

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Ulcerative Colitis
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Posted 9/17/2011 1:20 AM (GMT 0)
InSoFla,

I definitely think the SCD has helped, but I haven't been that strict this past week, so I'm hoping to get myself back on track! I really think the true test will be when I start to wean off the Prednisone, which the doctor that prescribed me LDN, doesn't want me to do until 2 wks of being on LDN. I hate being on 40mg for this long (been almost 4 wks now) but I know that I needed to "heal" first before weaning. I obviously use the term "heal" loosely since Pred is like a bandaide. If I'm still feeling this great by Monday, I may start to taper myself by 5mg. What do you think?

No vivid dreams that are out of the ordinary. I'm a pretty vivid dreamer already, so I didn't think it would be a side effect. It's only been 4 days though!
Posted 9/17/2011 11:16 AM (GMT 0)
Dear UC-Friends,

New to this blog/forum, glad to find it and hope I can be of some support to others.

I've had UC since 2002, and have been off all med's for 3 years and counting, symptom-free with GAPS Diet and some strong Probiotics, under the guidance of Dr. Tom Cowan in SF who really knows how to treat UC and other digestive disorders .

I was on LDN for almost the last 3 years, first a dose of 2.25 mg, then a dose of 4.5 mg. Along with the dietary changes and other probiotic supplements and gut-support it did help. No side effects I could track. I have been off the LDN now for one month and counting, and am taking some Tibetan herbal medicine which seems to be bolstering my wellness.

Here is a link to an article by Dr. Cowan on UC and LDN that I thought some folks might find helpful:
fourfoldhealing.com/2009/03/10/march-2009-newsletter/
Posted 9/17/2011 11:49 PM (GMT 0)
mamabee,

It's good are are on the SCD diet; I'm sure you'll get back on track.

Are you still doing the slippery elm? How often?

With regard to tapering the prednisone, I think it might be best to follow doctor's instructions.

You'll be there soon enough :-) .

Posted 9/18/2011 12:11 AM (GMT 0)
Anagarika,

Welcome to the forum.

Thanks for posting this link. Interesting.

I've started on a diet of grass-fed chicken, beef, bison, lamb, and eggs too recently.

What made you decide to get off LDN?

Personally, I don't plan on getting off it, as there's no reason to.

Posted 9/18/2011 12:20 AM (GMT 0)
I honestly don't see much of a change being on SCD. I just get more irritable! Ha!
Posted 9/18/2011 2:20 PM (GMT 0)
InSoFla,

I'm definitely going to follow doctors orders! Another week isn't going to hurt..I just have to be patient! lol I'm doing the Slippery Elm 3x's a day (3tbsp). I do that with my VSL.

Mom2girls,

The first 2 weeks I was VERY irritable, but it DOES get better I promise! I've been cheating a lot and feel it...more fatigue etc. Thinking of starting the Intro Diet again to get back on track. How are you feeling otherwise?
Posted 9/18/2011 8:23 PM (GMT 0)
mamabee,

Sounds like you're doing everything right. Stick with it, and you'll keep seeing better and better results.

I'm sure the slippery elm powder with the VSL is helping too.


mom2girls,

You have to give the SCD the time for your body to wean itself from all the bad stuff, yeast, etc...

I know patience is a virtue - which frankly I don't have :-) .

Posted 9/18/2011 11:29 PM (GMT 0)
Still bleeding, urgency and feeling like crap (pun intended)! I even called the doctor about starting Remicade. That's how bad it is. I can't even go to the grocery store without having to go 3 times! I'm miserable! I guess while I'm waiting for the Remicade paperwork to go through I'll try the SCD. I just don't know what else to do! My life is being totally affected by this!
Posted 9/19/2011 10:53 AM (GMT 0)
Mom2girls,

I am so sorry to hear you're still not doing well :( I give you so much credit for even going to the grocery store! When I felt like that, my husband did all the errands. Is there anyone that can help you so you can get the rest you obviously need? I know it's hard with the kids, but sometimes we have to surrender. I know for me, it took a long time to admit that I needed the help.

I am so afraid that once I start tapering my prednisone, I'll be right back at the beginning so I'm just praying hard and thinking positive....and enjoying the good days. I really pray you make a turn for the better soon.

I go to my GI today so we'll see what he says about my progress etc. I've also had some bleeding the past couple days, but I'm kind of feeling like it's my hemmies ugh! Got them bad after our 2nd daughter and now they're back with a vengeance! The bleeding is usually on the sides of my stool and then at the end. Prob gonna have to look at them....which I dread.

Hope today is a better day. Always thinking about you even though we've never met....love this forum:)
Posted 9/19/2011 8:12 PM (GMT 0)

Update on my condition with LDN.  It's been 9 weeks and doing very well.  Formed stools, I'm eating more gluten products without a problem.  I'm eating wheat bread with peanut butter and light on the jam/jelly.  I still eat rice a lot and broccoli (cooked), VSL#3, however my stools are normal.  I'd say I am in REMISSION!  Yahoo!

I called my GI and requested to continue on the enamas 2 or 3x weekly to stay on the safe side for at least another 6 months.   I really hope you give this a try, I too was very, very miserable and just eat very strickly for 7 weeks.  I also did the antifungal med (nystatin) for about 6-7 weeks to correct the imbalance of yeast in my system.  Hang in there, it truly works.  I'm starting to gain a bit of weight, but probably stabalizing now.

LDN gave my life back!!!  Many thanks to those who keep posting about LDN and how it works, gave me the courage to try it.  So I encourge others to try it....it works.  Again LDN is just one piece to the puzzle, you need to cut out gluten, dairy, yeast for a while, sugar...however not forever, just for awhile....listen to your body....Blessings!

Posted 9/19/2011 9:38 PM (GMT 0)
Mamabee - yes enjoy the good days! This disease is so unpredictable. I hope you find lasting relief! I too think of you and am keeping my fingers crossed for total healing! Keep me in your prayers. I am very confused on what to do.

Hopeful4UC - I am so glad you are in remission! This is exciting news!!!!! Maybe I should keep taking LDN while on the 6MP and Remicade (if I actually go through with it).
Posted 9/19/2011 9:38 PM (GMT 0)
Mamabee - Can you tell me exactly what you eat on the SCD?
Posted 9/20/2011 2:26 AM (GMT 0)
I started with the 5 day intro diet and then from there I introduced the homedmade yogurt. So an example day would be:

Breakfast: tall glass of yogurt with honey

Lunch: Fish, Broiled burger, turkey burger, chicken burger, SCD legal sausage (bascially any form of SCD legal meat for protein) and then a veggie...green beans, spinach, or zucchini were ones that I had introduced slowly and had no problems with. Ate that a lot.

Dinner: Same options as lunch, but obviously I'd eat something different.

Snacks: Yogurt, Larabar, Almonds (not supposed to introduce nuts until 6 months in, but they don't bother me)

It's really tough in the beginning b/c you're going to be hungry and tired, but it's so worth it a week or so in. The last week that I've cheated, I feel crappy and bloated. Starting the Intro Diet sometime this week again and going from there. Carbs are NOT ok for me and now I know it for sure. The bloating and the gas is just ridiculous. Makes my energy levels wacky. It's also hard b/c when I feed the girls, they eat everything I'm craving!

I really hope you can do it and it helps you. I remember when I started how defeated, depressed, and hopeless I felt. Once I tasted the homedmade chicken soup and realized that I could eat as much as I wanted at each meal, I felt better. I thought I'd be starving, but I never was. Between the soup, meat/fish, gelatin, and yogurt...it gets you through the day.
Posted 9/20/2011 2:44 AM (GMT 0)

mom2girls said...
Maybe I should keep taking LDN while on the 6MP and Remicade (if I actually go through with it).


In no way, shape or form should you stop this LDN. You need to give it several months before it fully takes effect.

Mine took me almost 3 months, and I had to learn the hard way that wheat and dairy of ANY KIND were NOT an option.

I am now doing better than I have in years. I'm on oral LDN 4.5 mg, avicel filler, and regular psyllium seed. I eat beans for the butyrate (all in the sig).

However, there's absolutely no question about the efficacy of the LDN in my case. I had tried the transdermal before and it didn't do much for over 2 months. The oral has really done it for me though, and I have a very severe case of UC.

Stick with it. You have absolutely nothing to lose and everything to gain.

Some psyllium seed might help you bulk up a bit in the immediate term for some fairly quick relief. It's wonderful stuff if you can get it down.
Posted 9/20/2011 11:57 PM (GMT 0)
mom2girls,

I'm sorry you're still feeling lousy.

But I do agree with Badslinke - you should remain on LDN, together with other meds as well.

mamabee,

Sounds like you're doing better and better.

Hopeful4uc,

LDN gave my life back!!!

This is great news!

badslinke,

Sounds like you've found the right "recipe" that works for you.

I'm so glad.


 

Posted 9/21/2011 12:29 AM (GMT 0)
 

Here's an interesting article on LDN and various diseases, including UC.

http://articles.mercola.com/sites/articles/archive/2011/09/19/one-of-the-rare-drugs-that-actually-helps-your-body-to-heal-itself.aspx

It's the first time I've seen it posted on Dr. Mercola's site.

I thought it might be interesting to those of you who are on the fence about LDN?

Hope this info helps.

Posted 9/21/2011 4:53 AM (GMT 0)
Hello InSoFla, my daughter (7 years old) has UC, she's been on Pentasa and SCD for 9 months, since she was diagnosed in Dec. I was looking into LDN and i made a call to a doctor in NYC today. Just now I read your post, Is the doctor that prescribed LDN for you in Florida? Will you email me his name/number. Also do you have a naturophatic doctor putting all this together for you. Im doing all the research for my baby but i'm lost sometimes. She follows Sdc and i'm also giving her l-glutamine, d3 (not megadoses like you, and the doctor tells me not to give it to her) multi vitamins scd legal, boswellia, Natren probiotics, Omega 3,. I need to read about slipery elm now and can you tell me what is IMO. Are you familiar with Jini Patel Thompson? I'm reading her book and following some of her advice trying not to compromise SCD, it's not easy, i wanted to know if you have read it what did you think. Sorry about all this questions but i am almost desperate trying to help my little girl, yes little, UC, i believe, has stunned her growth. Endocrinologist next. Thank you for your help and I am glad this therapy works for you.
Posted 9/21/2011 1:56 PM (GMT 0)
titusmom,

Welcome to the forum; I am sorry you have to be a part of this.

I am so sorry you have to stand by and watch  your little girl suffer with UC. It's bad enough when we, as adults, have to suffer, but to watch your innocent child suffer - that must be horrible. I know the world of UC is overwhelming. That's why it's so important to get informed, which is what you are doing.

Yes, I've heard of Jini Patel, although I have not read much of her stuff. What I didn't like  about her website, is that IMO, it seems in order to get better through her process, you have to buy alot of her products - to me, that's always a red flag. Anyway, that's just my opinion.

With regard to LDN: I got mine from a local osteopath (in florida). I know there are doctors who will prescribe in NY, I assume you are in NY?

Mamabee is out of NY, and got her prescription from a doctor in NY. But I would recommend you call Skip's PHarmacy - 800-553-7429 - they ship LDN worldwide, and I'm sure he may work with a doctor from NY. If not, here's where you could get one: http://www.ldnscience.org/find-a-doctor/search , make sure you put LDN in the drop down menu.

There are other things I would recommend to you as well, which I will post in a separate post for you.

I understand your concern about stunting her growth, but I truly believe once you get her on the right path and LDN, that will turn  around and you may not have to see an endocrinologist.

Anyway, if there is anything you can think of that I can be of help to you, let me know.

WHat do you think?

I don't know if you're read one my other postings on LDN with lots of info. So, forgive me for repeating here for you:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too. Bottom line is it works!

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL.

They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease at:
www.ldndatabase.com

Hope this helps. Good luck to you.

Please let me know how it works out for you.


Posted 9/21/2011 2:04 PM (GMT 0)
titusmom,

Here are the other things I wanted to mention to you:

Here's what's worked for me:

1) Diet is key for me: I do the SCD diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: http://cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine 15 grams - for colonic repair.

3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's.

4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

5) Drink lots of good water.

6) Get your little girl's vit. d and b12 blood work done, to see if she is deficient.

8) start a food journal and see what correlations come forth

7) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works!

8) Adding rectal meds. Is she on any rectal meds like canasa suppositories or rowesa enemas?

9) You may want to add liquid vitamins/minerals to make sure her stomach does not have to do the work of breaking them down, and hence not absorbing them.

10) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig). And I would highly recommend your doing that to improve her nutritional absorption. They come in various flavors, chocolate, vanilla, strawberry. My favorite is chocolate.

 

What do you think?

I think the more information you can have on UC and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()

There is no question that this is a tough disease to deal with.

 

Let me know if there's any way I can help you. I really feel for you, and send you a big hug!


Posted 9/27/2011 1:16 PM (GMT 0)
mamabee, mom2girls, probiotic, badslinke, hopeful4uc, boxermom2,jray1971,collegestudent, colgone1,  and all others on LDN,

Just checking in for a status update: how are you all doing? how are you feeling?

Just to let you know, I've been on transdermal LDN for 7 months now, and am feeling great.

Up to 1 month ago, I was still having issues with incorporating regular foods into my diet (which was basically protein only), and then I tried the camel milk for 1 week, and then added per aguywithuc's suggestion the L-Arginine Ethyl Ester - and now I can eat lots of variety of foods.

I personally think that the camel milk "reset" my gut, but who knows maybe it's the L-ArgEE, which has tipped the balance.

All I know is that now I've been able to enjoy: fruits, veggies, salads, occassional bread products ( I don't want to overdo it and tempt the Gods, haha), dried apricots, pistachios and cashews,  in addition to my proteins. I still enjoy my twice daily protein shakes.

I'm doing well, and will keep on the transdermal LDN - because I don't see the harm in it - as it just boosts the immune system.

Let me know how each of you is doing :-) .

Posted 9/27/2011 9:50 PM (GMT 0)
Thanks for checking in InSoFla!  I've been meaning to post an update.

Last night I started my Pred taper to 35mg.  Both of my doctors are on the same page with the slower taper, so that's a relief.  My BM's are down to between 2-4 every morning.  I'm still doing the enemas and suppositories every night, so I think that's why I'm still going that much every morning.  Although, when I did the enemas a few months ago, I sometimes didn't have to go until the afternoon, so I don't feel completely out of the woods.  Still some blood and mucus as well (I know this is b/c I've totally been cheating on the SCD).  Haven't had to take Lomotil since starting LDN.  Urgency down all day...only in the mornings do I feel some urgency. 

My GI seems confident that I won't have to start the Imuran, so I'm really hopeful about that.  I also got more bloodwork done today testing my B12 and Vit D levels, as well as Celiac Disease.  When I told him that I had been on the SCD and saw great improvement he was all over it.  Also have to give stool samples sometime this week. 

I'm sleeping really well and have had no side effects from the LDN.  Dreading this Pred taper, but excited at the same time.  I'm due for my period soon, so we'll see how that goes b/c my symptoms always act up.

Still doing all the supplements listed in my signature, although I've switched doing the Slippery Elm to 2x's a day with my VSL#3DS as well...when I was doing 3x's for both, I was extremely bloated by the end of the day and felt awful.  I've been feeling much better now that I lessened to 2x's a day.  Haven't been doing the Psyllium Seed Powder, but planning on starting that again soon.  Also still doing the SCD homemade yogurt.

Overall, I feel like I have my life back right now and I'm trying to enjoy every single second of it b/c who knows what's around the corner.  The girls and I get out all the time and I love it.  Fall is my favorite time of year, so it's so nice to be able to enjoy it.  Pumpkin picking, getting together with friends, my daughter's Baptism in a couple weeks...so nice to know that I can enjoy these things!

The only side effect so far is the dreaded moonface :(  I can live with that b/c I know it will go away eventually, but it sure is weird to see myself in the mirror lol. 

Hope everyone else is doing well!  Thanks again for checking in :)

Posted 9/27/2011 10:21 PM (GMT 0)
mamabee,

Sorry about your moonface, but that too will go away soon...

Glad you are doing better overall, and that you're sleeping well on LDN.

I enjoy the vivid dreaming, lol.

I know it's so hard NOT to cheat on the SCD.

Enjoy the foliage with the kids, have fun!

I am so glad you are doing better :-) .

Posted 9/29/2011 1:36 AM (GMT 0)

Hey! I actually had my first Remicade infusion on Monday. It went well. I'm still on the 6MP and LDN and all the supplements listed. I really don't like the thought of being on both Remicade and 6MP so I'm going to talk to my GI about coming off 6MP if Remicade works. I decided to go ahead with Remicade because I was desperate to get better. I was one sick puppy! So far I still have rough mornings but the days and nights are good. My next infusion is October 10th. I still have little energy and just feel puny. I'm ready to get back to my old self and just feel normal again! I'm waiting impatiently!!!!

Mamabee, I've been thinking about you and I'm so glad you're doing so well! Yay!!!!!!!

Posted 9/29/2011 11:48 AM (GMT 0)
mom2girls,

Sorry, but hope you start to feel better soon.

Keep us apprised.

Posted 9/29/2011 4:04 PM (GMT 0)

Hello All:  Just to let you know my update.  I am doing very well being on LDN.  It has been now 2 1/2 months and I can eat pretty much anything; however I'm trying to be careful.  I alway try to eat lots of cooked veggies, and limit beef.  I recently had even hot choc and it didn't bother me.  I do try to limit my sweets (not good for a person anyway); limit coffee, alcohol, and try to just eat healthy.

LDN has given my life back.  I have pretty normal stools, maybe 1-3 daily movements, it's like a miracle.  I thank God everyday that I decided to pursue this path of alternative medicine.  Thank you LDN!!

I would advise to anyone trying LDN to just stick with it and a good SCD to aid in the healing, probiotics; psyllium seed powder.  Most importantly listen to your gut, if a supplement does not work for you then move on to something else.  Not all supplements work for everyone; for me psyllium seed powder is great; VSL#3 is good for me; however l-glutimine doesn't agree so well...we are all so different yeah ; but just give LDN a try.  I really wished I used this many years ago.

I just have one question:

If you are in remission, with no signs at all--would that mean your colon is healed and do not have UC anymore?  or still have UC with altered cells on your innerlining of your colon and still considered to have UC?  Well at any rate, I'm not scheduled for a colonoscopy until 2013-I think.

Try LDN, give it time; it works!  At least it worked for me when everything else failed, like 6MP, Remicade, Lialda, Humira, Asacol etc.   Blessings of all of you and keep us posted of your results!   

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