Any current members on LDN?

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memorytheatre
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Date Joined Feb 2008
Total Posts : 25
   Posted 7/25/2009 11:24 AM (GMT -7)   
After a flurry of posts about ldn and people relating how it was helping them, the topic seems to have disappeared from these boards. Is anyone out there currently in remission with the aid of this drug? Anyone willing to relate their experiences pro or con? We're about to start tapering my son off of Imuran, which hasn't seemed to work, and will be beginning ldn next week. I don't hold any irrational hopes about the drug, but direct, honest experiences from people whom it has helped are difficult to find. Thanks.
Father to 2 year old son diagnosed with indeterminate colitis, but it's probably acute severe Chron's.
Imuran (32mg's a day), 8mg Prednisolone, Omega 3s, probiotics, vit. c, multivitamin, SCD legal yogurt.


janicea
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Date Joined Feb 2009
Total Posts : 350
   Posted 7/25/2009 11:28 AM (GMT -7)   
I am doing very very well on it. Ask away. Two hints: I suggest getting it compounded as a cream so you can easily scale up the dose.
two: scale up the dose instead of going on 4.5mg -- it'll save you the sleep issues. I love it. Changed my life. Never felt so great - even though I have to get surgery next month for a pre-existing compartmentalized hernia. It ups my chances also of a good surgery since it's totally quieted down the crohn's.

ps: cream rx: 9mg/ml 3ml each, .5 ml is 4.5 mg dose
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!

Post Edited (janicea) : 7/25/2009 12:34:32 PM (GMT-6)


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 7/25/2009 11:41 AM (GMT -7)   
Thanks for the quick reply Janicea! My doc said he didn't trust the cream as much as the pills. You seem to have found the cream to work well. Right? Also, he has suggested we give my son (30 lbs.) 1/4 of a 4.5mg tablet to begin. Is it your understanding that the dose should be regulated to the patients weight? Any advice that you think would be helpful to know when starting ldn would be most appreciated.
Father to 2 year old son diagnosed with acute Crohn's.
Imuran (40mg's a day), 6mg Prednisolone, GAPS diet, Mutaflor, Bio-Kult probiotic, Yes parent oil, about to start LDN
Always flares when we dip below 5mg Pred. Just got over C. Diff (we hope).


janicea
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Date Joined Feb 2009
Total Posts : 350
   Posted 7/25/2009 11:53 AM (GMT -7)   
The cream is better in my opinion, because it skips any issues in the intestines, ldn anecdotally does not work as well if you have any issues with intestinal yeasts (candida albicans) which most of us chronies are fighting all the time due to excessive antibiotic use. The cream does not cause any problems with that.

Also as far as I know - at least in my compounding pharmacy, there are no tablets, only capsules, and it's a pain in the butt to open them an guesstimate how much to empty out, and then put it back together and take it again. Trust me on that LOL. PLus with a child - it will be very easy to dose with the cream! I take both, depending on what's in the house, I vastly prefer the cream. I don't sense any difference in efficacy.

As far as dosage goes, the person you want to pay attention to is Jill Smith at Penn State, who is currently running a study on pediatric crohn's disease and LDN. If you live anywhere near Penn State, you might consider using her as your doc or at least get a referral from them.
clinicaltrials.gov/ct2/show/NCT00715117

Also, for more info on why the cream is good the work of Jacquline McCandless is well worth reading.
http://www.google.com/search?q=ldn+pediatric++jacqueline+mccandless+cream&aq=f&oq=&aqi=

If I had a kid, I'd be doing exactly what you are doing. Keep asking q's, I'll check back later and I'm sure others will chime in.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 7/25/2009 1:41 PM (GMT -7)   
Thank you janicea for that very useful info. The potential absorption problem in the intestines and Candida issues make sense in support of the cream. My son has been on Pred. most of the past year and a half and Imuran for 8 months. Recently on Flagyl he had a few stools that smelled like a brewery so I'm almost positive he has bad Candida. We're trying hard to stick to the GAPS diet to combat that.

I've been following the Penn State trials as best as I can. Luckily I have access to medical journals through Stanford.

To anyone reading this, does anyone have experience getting LDN cream at any SF Bay Area compounding pharmacies?

Thanks.
Father to 2 year old son diagnosed with acute Crohn's.
Imuran (40mg's a day), 6mg Prednisolone, GAPS diet, Mutaflor, Bio-Kult probiotic, Yes parent oil, about to start LDN
Always flares when we dip below 5mg Pred. Just got over C. Diff (we hope).


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/25/2009 7:52 PM (GMT -7)   
Here's the "official" ldn compounding pharmacy list page:
http://www.lowdosenaltrexone.org/index.htm#pharmlist

Most people tend to use Skips Pharmacy in Fl. He's super interested in LDN so that might be an option for you. They do a ton of mail order.

I had great luck with Olive leaf extract to combat the candida. It worked better than Nizoral and Diflucan. I still take it every day. No side effects.

best,
-janice

ps: also as I recall Jackie McCandless is in Oakland. Maybe you could call over there and ask about a compounding pharmacy in the bay area... they'd know.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/25/2009 7:57 PM (GMT -7)   
re: dose -- I'd be quite conservative starting out.... and I'd really suggest calling penn state or mccandless to get the pediatric dose suggestions. I hear mccandless answers emails...
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/26/2009 6:07 AM (GMT -7)   
I was on LDN for a 5 month period and just recently stopped. I do not want to play down LDN at all because this is the only drug out there that I have high hopes for right now. Within the months I was on it, I was almost always returning to small flares here and there but in between felt great! Now this could of been because I had a yeast build-up that was out of control and the LDN was just not touching through that or I was at a point in where my body needed something like prednisone to get out of the ditch so to speak. When I first started it I was coming off prednisone and getting over a nasty flare so if anything I thought that would of been a perfect time to introduce the LDN. I had to stop it and care to my serious flare with a round of prednisone which I am still tapering from. I can't say for sure if the LDN helped, obviously it did'nt at the time, but I still have faith it could help me someday. I was dosing myself, which is fairly easy, but I don't suggest this because even thought the med is not invasive, we are still messing with the immune response. It was when I got really bad as I was upping my dose to 4.5. I always felt good at 3.0 - 3.5 but was suggested to raise it by one dr I went to - thats when things got into a serious flare. Maybe my body was getting too much which can alter the effectiveness of the LDN and actually up your immune response rather then keep it at a modulated level.
I encourage you to try LDN for your son - you have NOTHING to lose and I pray that if you do it works wonders. Never give up on it. Try different doses, the cream, the pill, the liquid..we are all different. What works for one may or may not work for another. I have a lot faith that it can help and that this drug is one of the brightest opportunities to come to us.
26 yo Female, Crohn's
Diagnosed at 6...symptoms at age 2
Bal-resection 1998
history of steroids, antibiotics, Asacol, Prilosec, Pentasa, 6mp Imuran, Remicade, Humira...
Humira 12/08 and stopped after 3rd dose
LDN 3.5mg Feb-July 09
starting Humira Again


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 7/27/2009 10:41 AM (GMT -7)   
Thank you for your kind words and for relaying your experience with LDN, LarryLu. It is helpful. Thanks for the added info janicea.

I will update our experiences as we begin ldn for anyone interested.
Father to 2 year old son diagnosed with acute Crohn's.
Imuran (40mg's a day), 6mg Prednisolone, GAPS diet, Mutaflor, Bio-Kult probiotic, Yes parent oil, about to start LDN
Always flares when we dip below 5mg Pred. Just got over C. Diff (we hope).


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/27/2009 1:51 PM (GMT -7)   

My 21 year old daughter started 4.5 mg LDN a week ago today. Gets it at a Manhattan pharmacy compounded with Avicel. 

No bad reactions whatsoever, so far. No sleeplessness or vivid dreams. Nada.

Because she has been symptom free for a long time (and yet a recent colonoscopy shows active inflammation), we won't be able to tell whether it is working without some lab tests. 


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/27/2009 3:46 PM (GMT -7)   
One thing that was remarkable to me, that you might observe with your daughter, was a huge increase in energy. I became what I thought was "normal" energy-wise, after being tired forever. This started around day 10. Even with the sleep issues. It's continued for me for the past 10 weeks, with no exceptions. If she tends to be de-energised a lot, you might see that as an affect. :)
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/27/2009 8:46 PM (GMT -7)   
yes I was so ENERGIZED too while on LDN! It was the best feeling in the world. I was getting myself in the gym every other night, going all day long, and very happy all the time. Its almost a continuous runner's high....:)
26 yo Female, Crohn's
Diagnosed at 6...symptoms at age 2
Bal-resection 1998
history of steroids, antibiotics, Asacol, Prilosec, Pentasa, 6mp Imuran, Remicade, Humira...
Humira 12/08 and stopped after 3rd dose
LDN 3.5mg Feb-July 09
starting Humira Again


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 7/28/2009 1:12 AM (GMT -7)   
janicea, your post recommending Dr. McCandless' work prompted me to email her and she emailed back quickly and with lots of extremely helpful information. She helped formulate the cream and has around four years of experience working with it by now so she has as deep a wealth of knowledge using it as anybody around I guess.

She lives in Hawaii now and consults occasionally on certain cases. I am hopeful that she will take on my sons case and help guide us toward giving ldn the best chance to work for him as possible. To anyone reading this who is interested, she formulated the cream originally for Autistic kids because they have difficulty swallowing, but has used it on Crohnies, even on a girl as young as three, who she says is doing really well.

That LDN energy sounds like something I could use these days with all the stress and worry I'm dealing with.
Father to 2 year old son diagnosed with acute Crohn's.
Imuran (40mg's a day), 6mg Prednisolone, GAPS diet, Mutaflor, Bio-Kult probiotic, Yes parent oil, about to start LDN
Always flares when we dip below 5mg Pred. Just got over C. Diff (we hope).


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/28/2009 3:32 AM (GMT -7)   
memorytheatre - Hang in there! I can only imagine the stress you are under. I was started getting symptoms at age 2 as well and not until now that I am 26 is where I am learning how much strength my parents must of needed to always keep there heads up and have faith that I would feel better each day. Now that I am taking my health in control for the first time, I am learning it is a complicated process of emotions that you go through. Its alot of work researching and learning of new possibilities that could help your son and this can easily get overwhelming. Don't forget to take time for yourself too. I know your son is probably your world right now - and thats ok- but always keep your health at bay too. The stress and worry can take a tole! Remember to breathe everyday - deep breaths. This simple thought has helped me immensily...you don't realize that you forget.

Let us know updates with the LDN -so happy that Dr McCandless responsed so quickly to you :)
26 yo Female, Crohn's
Diagnosed at 6...symptoms at age 2
Bal-resection 1998
history of steroids, antibiotics, Asacol, Prilosec, Pentasa, 6mp Imuran, Remicade, Humira...
Humira 12/08 and stopped after 3rd dose
LDN 3.5mg Feb-July 09
starting Humira Again


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/28/2009 11:36 AM (GMT -7)   
Dr. Mccandless has really good vibes in the LDN community -- happy that you heard from her! yay! The cream is a great thing. All the best!

Laury - I hope you get the to the point where you can go on the creme. Also, I don't know where I said it (maybe this thread) but olive leaf extract saved the day with my yeast issues.... that and scd yogurt -- but the olive leaf worked almost over night. Still taking it once a day for luck.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!

Post Edited (janicea) : 7/28/2009 12:39:05 PM (GMT-6)


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/28/2009 7:03 PM (GMT -7)   
Thanks janicea! I wish I could experiment more with LDN right now but I am just in too bad of a flare and have been for the last 8 months. .. I am starting Humira actually. It was officially decided today. I have such a severe case of Crohn's and I have had it for so long that the dr's feel this will really help me. Maybe if the Humira fails I can retry the LDN. By then it should be more widely accepted by the medical industry - or lets pray that it is!

Can I take Olive Leaf Extract Oil instead of the pills? I have a little vile of it and it says I can take it directly under the tongue.
Thinking this will have the same effect if not more beneficial.
My goal is to still get my yeast/bacterial growth under control. I just ate a raw garlic clove for the first time -whew! stay away!! :)
26 yo Female, Crohn's
Diagnosed at 6...symptoms at age 2
Bal-resection 1998
history of steroids, antibiotics, Asacol, Prilosec, Pentasa, 6mp Imuran, Remicade, Humira...
Humira 12/08 and stopped after 3rd dose
LDN 3.5mg Feb-July 09
starting Humira Again


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/29/2009 7:20 AM (GMT -7)   

Dang, seems like there are side effects, after all. The fifth day on LDN, my daughter came home very tired with a subnormal temp, took a nap (atypical) and then the temp was normal.

And then, days 7-9, has been de-energized, bloated, gassy (the last two never happen so this is very atypical). Cramping day 8, but she thinks it was menstrual cramps.

She has been taking LDN alone, so will try it with food to see whether this helps. We are hoping these side effects are temporary.

One theory seems to be that the LDN might be altering the bacterial/fungi balance in the gut, causing the bloating and gas.


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/29/2009 7:30 AM (GMT -7)   
I rememember *somewhere* I read that Mccandless said in the first 2 weeks as the immune system converts from type one to type two response (this is from my one cup of coffee memory this morning) that these sorts of events are normal. I just tried to find the exact citation and could not -- however I will go look later for you. I beileve I actually read this when the same thing happened to me during the first two weeks.... youre on my to-do list for today. -j ..also for 30 bucks or whatever the cream is well worth it.. what dose is your child on?? I ended up backing off to about 3.5 and working my way back up - i had the sleep issues myself.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!

Post Edited (janicea) : 7/29/2009 8:42:00 AM (GMT-6)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/29/2009 7:35 AM (GMT -7)   
LauryLu: I took a liquid extract the first go-round with olive leaf extract, but it was a lot of extract, like maybe a tablespoon at a time?? too much to absorb under my tounge plus it tasted like crapola. I made it through the liqiud and then switched to pills. Just make sure you are getting the same dose as a capsule and you should be fine. know what I mean?
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/29/2009 7:40 AM (GMT -7)   
AH.

"Other reasons of negative responses to LDN by Dr. Jaquelyn McCandless

Re: ldn


Basically I cannot know for sure why the response to LDN would have been OK for awhile and then you got a poor response. However, there is a phenomenon that happens to some people that as the immune system is shifting (usually from T2 to T1) right after starting LDN, the immune system drops and people get an infection, cold, flu, cold sore, etc. which is usually short lived. Candida tends to overgrow or a virus will flare up. These infections are usually short-lived unless something needs treatment. As usual, I need to emphasize that seldom is LDN a stand-alone treatment, but accompanies other strategies their body needs, especially a healthy diet.
"

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=448
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/29/2009 10:32 AM (GMT -7)   

thx, Janicea. She is on 4.5 mg. We expected some side effects the first two weeks, so are hoping they will eventually subside.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/29/2009 11:28 AM (GMT -7)   
Yet another LDN side effect -- appetite suppression.

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/29/2009 2:40 PM (GMT -7)   
I started out on 4.5. I made it about 2 weeks. Stepped down to 3/3.5 for a few weeks, then went back up. worked for me much better than trying to get thru the 4.5 without a break.
I mean, no one knows the exact proper dose for women/men - kids/adults, etc. I saw no difference between 3 and 5 however once I could get up to 4.5 I decided to stabalize there.
Give it a few days with your daughter. The only time I felt like a safe fell on me was the first 10 days, it happend twice.

if I don't take the caps with a full glass of water, I'm slightly nauseated for about 12 hours...

I actually spent a week, a week ago taking 10mgs because I am stupid and was using a ml of cream instead of .5ml. still, no difference. my side effects are finally gone. It feels great to be able to eat real food, I hope you and yours do as well as I have.

xoxo
-janice

good luck!
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 7/29/2009 8:09 PM (GMT -7)   
Thanks everyone for your support. I will post when we get started on the LDN. It is very nerve-wracking because my son has been on prednisolone for close to a year now. We are always weaning of course and have gotten him all the way off a few times but never for more than a month. At the end of that month he had to be admitted for anemia and subsequently received his fourth blood transfusion. At that point he was about 18 months old. Just this week I have really noticed his shoulders cracking when I lift him and we absolutely have to get him off the corticosteroids.

But he was flaring bad at 4mg last week so we bumped him back up to 8mg to attempt to begin the LDN without too much blood. Naturally, he is in no condition to be messing around, but we really want to try a non-immunosuppressant intervention before going to Remicade. Best of luck to everyone.
Father to 2 year old son diagnosed with acute Crohn's.
Imuran (40mg's a day), 6mg Prednisolone, GAPS diet, Mutaflor, Bio-Kult probiotic, Yes parent oil, about to start LDN
Always flares when we dip below 5mg Pred. Just got over C. Diff (we hope).


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/30/2009 3:53 PM (GMT -7)   
As I recall you can be on pred and LDN at the same time. I hope this works out great for you. All the best.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Done using silver sulfadiazine on Pyoderma, changed to steriod cream, PG 60% healed in 3 weeks . B-12 shots. Juicing veggies!

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