explaining LDN to my doctor?

Hopeful · Post by **Hopeful** » Fri Mar 13, 2015 7:47 am

I have an appt. with my rheumatologist in a few weeks. we will be looking over my recent blood tests to see how the Sjorgren's, fibromyalgia, Raynaud's "markers" have improved, or not, from the use of hydroxychloroquine. He asked me to discontinue this med about 2 months ago, and I can definitely feel a worsening of all symptoms. Of course, it's been a super-cold winter, so that doesn't help matters.

I would like to provide him with some credible information on LDN to see if that might be a safer alternative. Can anyone direct me to some doctor-friendly research?

Thanks, all. My CC continues to show great improvement with the diet and I'm tapering off the Entecort very slowly - down to one every 5 days!

Lilja · Post by **Lilja** » Fri Mar 13, 2015 10:34 am

Hi Hopeful,

The only litterature I found in English was this article:

http://www.sciencebasedmedicine.org/low ... e-science/

LDN is said to both supress the immune system and also enhance the immune system. That is somewhat contradictory to me.

In my country doctors very seldom prescribe LDN, and we have only one pharmacy that produces it.

PS: You say that your CC continues to show great improvement with the diet. Wouldn't it be wise to wait and see if your other issues will improve, given time and a diligent diet, before you try LDN?

Lilia

Zizzle · Post by **Zizzle** » Fri Mar 13, 2015 7:49 pm

Check out some of the research links at LDNresearchtrust.org

I've been on LDN for one year. It stopped my Dermatomyositis skin rash in less than 12 weeks and vastly improved my energy and mood in the first 2 weeks. I'm having a mild flare now, but it's due to stress, viruses in my household and other factors.

There are several groups on Facebook where you can ask about LDN. One in particular is about LDN in Sjogrens, RA and related conditions.

Facebook groups:
Got Endorphins
LDN Research Trust
Look for one with LDN and Sjogrens in the title.

Hopeful · Post by **Hopeful** » Sat Mar 14, 2015 6:21 am

Thanks, Zizzle. I have been resisting joining Facebook but this could be a good reason to.

I notice in your bio that you mention having had mono. Is this significant? I had it when I was 5 years old, about 6 months after having the mumps. I know I missed a couple of months of school because of it. Like you, I also have joint hypermobility sydrome.

Thanks for the info.
Chris

Gabes-Apg · Post by **Gabes-Apg** » Sat Mar 14, 2015 6:16 pm

Chris
if you google the search words provided by Zizzle, you should still get some good articles without having to join facebook.