Starting on LDN

Hi everyone,
I have had quite an eventful year. I had a large, benign, intramuscular tumor removed from my thigh last month. I have lost about 27 lbs since Sept - six just this week. I had thought I had stabilized, but the weight is still coming off and I have no appetite. I started Ensure shakes yesterday, as I nearly fainted earlier this year when the weight was dropping off so quickly.

Anyway, I was finally able to make a compelling case to try LDN (low dose naltrexone) to both my primary care physician and GI. My long-time PCP prescribed it after a 20-minute discussion/reading of info in her office. My GI took abouot 3 1/2 weeks to study and consider it.
Anyway, I started LDN in addition to my daily Pentasa about 4 nights ago. Of course, I've noticed no difference yet.

In fact, my appetite continues to be puny and my Crohn's-related arthritis continues to be a bear that brings me to tears each morning.
I am PRAYING, PRAYING, PRAYING that LDN helps me. I am terrified of Remicade since my mom died of leukemia and the tumor scans earlier this year were inconclusive about a benign or malignant mass. So I already have an oncologist even though the tumor ultimately turned out to be benign.

Has anyone had luck with LDN? What has been your experience. How do you take it (what's your routine - pill, liquid, cream?), how much and how's it working for you?

Thanks!

Joyce

Joyce,

I'm sorry you've been struggling so, with so many issues.

I am glad to see both your docs were willing to let you try LDN.

I've been on LDN successfully for 1 1/2 years now, and am in full remission.

I applaud your willingness to try it.

There are some things you should be aware of:

1) filler is key. Many are problematic. The only one i would recommend is: sucrose filler which is hypoallergenic filler.

2) some people do better with oral LDN, and others who have absorption issues (as many IBDers do, me included) do very well with transdermal LDN.

3) if one form doesn't work, do not give up, do try the other one

4) those on gluten and dairy free diets seem to get faster and better results - probably within a few days to several weeks, whereas those NOT on restricted diets may have to wait several months to get good results

5) make sure you get it compounded from a pharmacy that has done thousands of scripts. IMO, Skip's in Boca Raton, FL is the best.

They have 20,000 patients all over the world to whom they ship LDN, and are very familiar with all the nuances of LDN with various diseases.

Which type LDN were you given: oral if so which filler? transdermal?

How and when are you taking it?

I hope and pray it helps you.

Let me know how I can help you.

 

Hi, you could get your flare under control by using the SCD - this diet teaches you how liquid diet the first weeks in (made of chicken broth and some spice (home made of course) will get your flare to stop. Later on this diet allows more and more cooked vegetables, but you have to follow a regime that is quite restrictive - to get much better. It's a lot of work to learn how to manage this.

Why not go to all the yahoo groups that is made by Crohns and U.C patients, there's a lot on yahoo named something like SCD - the Specific Carbohydrate Diet....

Many are using this diet for some weeks to taper the flare, and then using it in a moderated way. Other people are staying on a gluten free diet to calm down flares.

A good diet could do a lot for us, but we have to try which one that suits us the best. There's a few things to remember though: don't cheat while finding your disease triggers, write down what is ok for you, and what is not.

I have used LDN for 5 years, I didn't use any diet and I had a heavy flare when I started LDN, but LDN hit me BIG time, pain away within a day, anemia gradually, diarrhea gradually went away, and within some months most of my symptoms were gone. Within a year I was totally symptom free. But I haven't been in remission, I have had a few symtpoms on and off, but I never needed any other medication than LDN.

I have been lucky, many are succeeding with a combination of another Crohns med and LDN. // Bee

I'm on my 6th or 7th night. Moved to 4.5 last night.
I wonder if I should switch to the cream.
I take a probiotic. I have not tried drastic diet changes like no dairy or gluten. I do try to watch my intake of raw fruits and veggies and to take it easy on pastas.
Is slippery elm good to take? How much and which brand?