My experience with LDN was a disaster. I don't know if it was the LDN that caused it or coming of Imuran. Now I am trying like heck to get back to where I was before I started it two years ago.
There were two trials on it at Penn State. The first showed some promise but I have never heard the results of the second which was a better test.
However, no more "Off Labels" for me. Read my bio.
Hello all- I am new to the group, but saw this post on LDN. I joined in interest in what other Crohn's patients are currently using for treatment, because we found something in LDN and diet that really works. My 14 year old son has severe Crohn's. We have been out of the mainstream for a while now, seeking better treatments because my son was refractory to every treatment to some degree, including Remicade, Imuran, anti MAP antibiotic therapy and all of the big guns. In 2005, he was sent home from the hospital in a wheelchair (because of a severe fistula) and we were told Crohn's would make him weak and sick for the rest of his life and we had to learn to accept it. Prednisone worked, but that, of course, is not a longterm option. The doctors started getting stingy about giving out the prednisone prescriptions, even though that seemed to be his only lifeline. He had severe, fistulizing Crohn's Disease with symptoms starting mildly when he was about 6 years old (bleeding and incontinence) and then later diagnosed. He had long, frequent hospitalizations. Doctors were ready to do a colostomy. His growth was stunted and his bottom was like swiss cheese with all of the holes from fistulas, abscesses and fissures. His only med is now LDN and he's also on a diet with no fermented foods. No yeast, fungus (most additives are fermented in manufacturing, including corn syrup and vitamins [even the ones that say 'yeast-free' on the label]) or foods he has been sensitive to like tomatoes, potatoes, tea other than herbal or white tea, which is not fermented, and chocolate.
On LDN and the diet, He's had slow and steady weight gain and has now been growing out of his clothes after years at the same size. The past few days, I actually forgot that he he was ever sick! Zero symptoms. Active and healthy and happy. His fistulas are 90-95% healed and still slowly improving.
He takes 4mg LDN daily from Skip's Pharmacy with sucrose as the filler and he has also used the 50mg Revia pills dissolved in water with the same good results. We follow the diet fanatically, because he gets a flare otherwise, although the LDN has made the flares from dietary slips less intense over time.
My son, like many Crohn's sufferers, has an immunological response to yeast (like most, he is positive for ASCA), so it is very beneficial to keep it out of the diet. Even though the doctors didn't seem to think it would work to avoid yeast (because yeast is "everywhere and cannot be avoided"), it has worked great. We spent years figuring out the diet, then recently read The Yeast Connection as an afterthought and the diet listed there is pretty much the same, except our son still eats sugar and we have fine tuned it to his needs. The only supplement we have found that is not derived from yeast is coral calcium, so he takes that along with eating very nutritious foods. We used to think probiotics worked, but they never got him 'well' and we eventually noticed he was sensitive to them. Also, he eats broccoli sprouts sprouted at home, although the Yeast Connection says to stay away from sprouts. We just rinse them well and the nutritional value can't be beat. We are big on foods that are high in nutrients. One of the hardest things is staying away from vitamin enriched foods, especially flour and packaged foods, but we have found great brands of unenriched flour and pasta for cooking and baking. Also, condiments are difficult because he can have almost no commercially prepared condiments (mostly because of vinegar), but the ones we make at home are great. Those vitamins used to 'enrich' our foods are cheaply made from yeast.
For my son, LDN and diet had to go hand in hand. One does not work without the other, but together they are truly a miracle.
Post Edited (atxcrohns) : 1/4/2009 7:37:14 PM (GMT-7)
My Crohns was like this: Partial obstructions during the last year prior LDN. Diarrhea and bleeding. Abdominal pain every single day. Cramps in the abdominal area, vomiting and fever during the partial obstructions. Muscle cramps in feet, legs, hands, face, fingers, waist, pelvic and abdomen. A crazy electrolyte balance. Anemic and Fatique. My GI told me he was almost 100 % sure my symptoms was due to a stricture and wanted to give me a surgery. It turned out he was wrong. My intestines was narrowed due to an inflammation. LDN got rid of it. And my narrowing was gone. I could eat whatever again without vomiting and getting partial obstructions. All tests prior LDN showed I had severe Crohns activity. The same tests now tells the opposite. No Xrohns activity.
LDN helped me with my pain from the first day, helped me with my diarrhea after some weeks,- and I haven't had ONE partial obstruction since I started using it 1++ year. Today I had a wok loaded with vegetables, chicken and hot spices. Fresh, uncooked onion, crispy vegetables and garlic. I even had a lot of brocolli. Couldn't tolerate ANY of this earlier.
You need to combine LDN with a better nutrition. I don't use any particular diet, I just don't overdo any of the bad stuff. Avoiding to overload my system with sugar, coffee/alcohol and cakes. I eat a little home made bread with reduced yeast. But I know that many LDN users may need to avoid yeast or gluten. It seems that Crohnies may be a bit sensitive to these. I also avoid eating too much carbs. I make all my food from fresh meat, fish and vegetables.
You can order LDN at alldaychemist.(com?) and you need a rx from your GP. I make my own by mixing 50 ml of water and a 50 mg Revia pill. In a baby bottle. I use a syringe to get it up. I store my LDN in the fridge. I pay 160 dollars a year for it. I take it every night after 10 pm. Started with 3 mg and increased the dose to 4.5 mg. All side effects dissapears within 10 days. 25 % gets side effects. The most usual side effect is insomnia and vivid dreams. Use some sleeping pills or melatonin. It will anyway stop during the first week. Read more about side effects at www.ldninfo.org. Don't use narcotic pain meds while on LDN. The pain meds will be blocked and you may feel withdrawal symptoms. Contact the folks on the suggested groups to get more advice. Vivid dreams they could be funny or nightmareish...but this also gets away short after the first week on ldn. /Good luck!
Ohh, and LDN is not FDA approved. It has been rx'd to other patients groups (50 mg and more) for 30-40 years. LDN is the same medicine but in a much lower dose. It is compounded so that we can use it in 3 mg - 4.5 mg pills. Then the name is Low dose Naltrexone. The original name is Naltrexone or Revia. It's not illegal to get a rx on this from your doctor. But most doctors have never heard of it. You need to be armed to your teeth with good information to bring with you. A lot of doctors says no, when you arrive the office without ANY information to tell them you want to try LDN. Don't do that. Give your doctor the possibility to know what he's dealing with. If not, they will only look at you as if you've grown two heads.
Post Edited (BeeSting) : 1/4/2009 4:38:14 PM (GMT-7)
I did have a few dreams at first, nothing nightmarish though, maybe the one where I was prego again lol. We have three children and I'm done so that was not a pleasant dream. Anyway, one in particular I remember I was just reading in a bookstore, which I love to relax and read when I get a chance so that was a really nice dream for me. :) Other than that I really don't remember any dreams and haven't for quite some time.
In response to patientspider above, my son also did gluten-free along with yeast free, then after he was on LDN for a while, he was able to start gluten again. We waited about 6 months until we added wheat back to his diet. He still cannot tolerate yeast at all. So there is hope for getting the gluten back after you're feeling better for a while. When you do, Hodgson Mill naturally white, unbleached, unenriched flour is awesome. We tried several other whole wheat natural flours that didn't taste very good. Starting with something homemade where you can control the ingredients, like a flour tortilla (with just flour, sea salt and warm water for the dough), is a good way to avoid other potential allergens like yeast. We found that another safe recipe is the biscuit recipe on the can of Clabber Girl baking powder. I substitute half and half containing just cream and milk (about 1/2 half and half and 1/2 water) for regular whole milk because it is hard to find whole milk without vitamin D3 added, which is derived from yeast.
In the mean time, I'm not sure how many people here on gluten-free diet may already have this recipe, but I found it online and it chases away the Crohn's/gluten-free blues (and the cravings for gluten). We still use this for our pancakes, because we got used to these and like them better than the ones with wheat flour:
1 cup rice flour (Bob's Red Mill is best)1 tbs. sugar2 tsp. baking powder1/2 tsp. salt1 cup milk or rice milk (we use half and half and water like mentioned above)1 egg, lightly beaten2 tsp. oil
Mix all ingredients. Cook on griddle as usual pancakes. The pancakes will be thin. Use pure maple syrup or homemade fruit syrup with just sugar and fruit. Also good as a sandwich with eggs and homemade sausage:)
Post Edited (BeeSting) : 1/5/2009 5:24:53 AM (GMT-7)
Isn't Humira an immunosuppressant? I'm pretty sure LDN and Humira would work against one another.
Post Edited (BeeSting) : 10/29/2009 6:39:59 PM (GMT-6)
My daughter has been on 4.5 LDN, mixed with one pill Entocort (3mg), for several months - the first week, some fatigue, lack of appetite, gas. But then it settled down.
The labs show that LDN has reduced her sed rate from 8 to 2. CRP is low, too. Also, no side effects.
So for the last five weeks she has been slowly tapering off Entocort by taking it every other day - we are waiting for labs to tell us if the sed rate and CRP continue to be low. Also, whether there are any hidden side effects.
We should find out tomorrow. If they look good, she goes completely off Entocort (the last time she tried to do this, she ended up in a hospital in 2006).
She is also on a strict diet - almost identical to SCD, except she does choose to eat potatoes and rice.
Her health and general immune system appear to be great. No symptoms even before she took the LDN, because the diet and Entocort controlled the Crohn's. Right now it is looking good for her to go off steroids for the first time in years.