Monday, January 11, 2010

Update: 1/10/10

Nov. 16 I started taking low dose naltrexone, an old drug with a somewhat new use. It was originally developed in large doses to help get/ keep addicts off narcotics. In the process of using it on patients, as is often the case, they found it therapeutic for other things it was not intended for originally; especially it helps reverse autoimmunity when used in small doses, by fixing the shortages of endorphins, as best as I can explain it (for better more thorough explanations, go to www.lowdosenaltrexone.org).

I was successful at reversing my autoimmunity last year by going gluten-free, quitting nutrasweet, and doing chi gung every day. It lasted a month or 2, then I had an exposure to a lot of mold and stress and it all went back downhill. I stayed gluten free, and asparatame (nutrasweet)-free, and now I'm back to the chi gung and trying to take on less work. Plus, I have the LDN now (low dose naltrexone).

I've been faithfully doing chi gung every day since the new year, sometimes twice a day. Now that I have the routine down, it takes less than 10 minutes. I was somewhere warm for a few days, so I swam some and stretched a lot as well. All that really seems to help my shoulder pain, which is not fixed, but better. Because I do not know the cause of the shoulder pain, it makes it hard for me to know if my illness is improving, because of the constant pain (which may or may not be connected to the overall state of my health). But I get blood tests done tomorrow, and see the doctor Friday, so I'll know soon whether my 2 months of LDN have made any difference.

A couple weeks after beginning LDN, I developed yeast problems. This is not uncommon. It doesn't cause yeast problems; it brings existing ones to the surface. And if you don't deal with the yeast, the LDN is not effective. So, for a month now I've been taking oil of oregano (P.U. it stinks and tastes gross- so it must be good for me, right?). I take it when i get up and before bed, and now I'm staying off sugar, in hopes of killing off the yeast (candida). There are some tasty non-nutrasweet chocolates out there, thanks to the diabetic association, though if you eat more than a mouthful, you'll be farting up a storm.

and of course I'm still taking the LDN every night around 12:45am. The discussion groups I found via lowdosenaltrexone.org have been really helpful in guiding me along the dos and don'ts of taking LDN. Blood tests tomorrow- here's hoping for some good news!

2 comments:

sherri said...

Carla,

I don't have lupus, but I do have MS and I also take LDN. I've been on it for eight months now. It really has improved my quality of life. It has helped with pain, given me more energy, helped with my bladder function, etc. Has it helped with your pain?

I'm following your blog for a couple of reasons. First and most important, my best friend has lupus and she's currently not taking any medications. I think it would be good for her to follow you to see how LDN works with her autoimmune disease. I will be sharing this site with her.

Second, because I believe in LDN, I have become an advocate for it. I'm actually working with Linda Elsegood from the LDN Research Trust in getting the word out about a new website called www.LDNAware.org. You can add your group or link to this website for free if you like. So that this post doesn't take away from lupus and LDN, if you are interested in learning more, e-mail me @ sherriwhitern@gmail.com.

I wish you the best and I'm keeping my fingers crossed that your blood tests come back with great news!

Sherri

Carla Ulbrich, The Singing Patient said...

Hi Sherri
I'm one of the people who LDN didn't work for.
I really wanted it to work, partly for me, and partly so I could offer something wonderful, non-toxic and inexpensive to my fellow sufferers and I could say "look how it helped me!"

But it didn't help me.
People on the discussion list tried very hard to get me to stay on it but the amount of relentless pain I was in, and not being able to take narcotics, was too much. I can't take advil because of kidney stuff and tylenol is useless for pain.

I took LDN for 3 months and after 8 weeks my tests were actually significantly worse. Maybe because of candida. But certainly not because I didn't try, because I am on a gluten free, dairy free, sugar free nutrasweet free diet.

So, alas, I am not going to get to be one of those folks celebrating the joys of LDN. But thankfully I have some other things that do work for me, even if they are a lot more effort and cost quite a bit more. and I have returned to them (acupuncture, chi gung, herbs/ supplements)
best of luck!