LDN and side effects?

[Glenda]

This is my first post in this forum. My son was diagnosed this summer with Crohn's. After being treated with Entocort and Azothyoprine he ended up in Emrgency. He was taken off Azothyoprine and it was suggested that he go on Humera. I did extensive reading and searching on the Internet and library and felt that the risks of the biologics were too scary. I found out about LDN and filled the prescription for him out of the recommended compounding pharmacy in New York. He is also going to follow the advise of Dr D'Adamo and eat for his blood type and take the recommended supplements. Here is the question..... He took the first LDN and he woke up with abdominal pain for about 4 hours. Has anyone else had this reaction? I was feeling so positive about this plan but he can't afford to feel worse with going to university and playing high level sports. Is this just a coincidence or is this a potential side effect?
My next question is.... If he were injured and needed pain management how long would you have to be off the Naltrexone before you can take a narcotic based pain medication?
Thanks to everyone that takes the time to share their experience and advise.

 

[michaelearnest]

I have had Crohns since 1988. I have a wonderful GI and a wonderful GP doctor team. They have put my Crohns in remission and I am currently on Imuran with blood tests every 3 months. Do you have a GI or GP doctor team? Do they know that you did the LDN route?I continue at my age to play high level sports and coach them and manage them from my doctors and their prescriptions. I have always been treated for pain in sports by a drug called Ultram.

 

[Glenda]

u. son had a very bad reaction to imuran so he could not take it anymore. Many GI doctors don't know very much about LDN and she isn't open at all to alternative approaches. I think the best course for my son to take is to try these no risk approach first. The diet and supplement approaches have been very successful for some people that we know and I have done a lot of reading on LDN but want to know if anyone else suffered these same side effects

 

[LittleChloe]

My daughter has been on Ldn for nearly a year. Initially she had some sleep disturbance but it soon went away. I've not heard of Ldn causing abdominal pain so perhaps it's a coincidence. My daughter does really well with supplements and Ldn and so far we have avoided the other drugs. Give it a chance to work and it might do the same for you.

 

[Glenda]

Thank you I am hoping that it was a coincidence since I haven't heard of any other reports of that kind of side effect. How long has your daughter been on the LDN? What supplements is she taking? Did she ever take all the other drugs? How long did she take LDN before she noticed that it was helping? Does she have ANY Crohn's symptoms? Did she change her diet? I guess you can tell that we are new at this

 

[LittleChloe]

1. Chloe has been on LDN for 11 months. 2. This is a long list but here goes: Fish oil, digestive enzymes, curcumin bcm 95, vitamin d3, colostrum, fermented probiotics, monthly b12 shots, magnesium, potassium and zinc and iron. We had levels tested for the vitamins and minerals. She also takes small amounts (2 tablesspoons) of pure aloe vera juice and colloidal silver mixed together daily. 3. The only other drugs Chloe has taken were prednisone, flagl and one other antibiotic given to her in the hospital. She is on none of that now. 4. LDN probably took about a month to really kick in. We had a
c diff complication in the beginning that clouded the true results because it made her so sick. 5. As of now, no crohns symptoms. 6. She eats what she wants, but we do eat healthfully as a family. It may take a while to figure out what works for you. Just remember that while LDN is a fantastic drug it doesn't make the disease go away and you will have to treat the things that come along. This doesn't mean that it isn't working necessarily. It just means that you have a rotten disease that wants to keep coming at you. Keep learning so you can build an aresenal of things that work for you. By the way the LDN blocks opiates for approximately 4 hours. If your son needed some kind of surgery that's definetely a thing to tell them about. Very best wishes to you!

 

[Glenda]

ThAnks for all the info. Do you make your own colloidal silver? I have also read about people who have had success with colostrum. Does she see a GI specialist?

 

[KWalker]

How much LDN are you guys taking? (kids)

 

[LittleChloe]

Glenda, we do not make our own colloidal silver. It's very important that it's done exactly right, maybe you already know that. A reputable brand is sovreign silver. Chloe has a pediatric gastro doc. ( she's 16) We tell him everything that we do. Sometimes he kind of rolls his eyes but oh well he doesn't argue with results. There have been times I thought he would drop us because we didnt want to take what he prescribed but he keeps seeing her. KWalker we take 4.5 mgs ldn liquid form every night.