Friday, January 22, 2010

update: 1/21/10

As I've posted before, I recently started taking LDN (Low dose naltrexone) in hopes of getting ym autoimmune activity back under control. I got my lab tests back on 1/15 and they were disappointing- I'm actually getting worse.
However, I do have to consider two things: I went on three trips in one month (airplane- very stressful and aggravating) and I got about 20 mosquito bites and spent a week in very unpleasant company right before my labs. Lupus is exacerbated by stress.
The other thing to consider is that when you use alternative medicine, sometime things get worse before they get better. Folks often call this a "healing crisis."

Of course at some point, when things get bad enough, you can no longer afford to wait for them to turn around, so I have not ruled out at some point resorting to getting a shot of prednisone to calm things down. I don't want to go on the oral daily prednisone if I can avoid it, because- as many of you know- it makes me gain 40 pounds, get a moonpie face and acne, have horrible mood swings, and lose my hair. I've already been through that 3 times, and I just can't face a 4th time until I'm sure I've tried everything else. My $40 nylon (itchy) wig sits on the other side of my office, reminding me how close I am to having to wear it again.

My rheumatologist understands my feelings on prednisone (I'm sure he's seen the results many times), and he saw me turn everything around last February- all my tests went to normal- via a gluten-free diet, acupuncture and chi gung. So, he told me to start taking 50 mg/ day of DHEA, and continue on the LDN. I'm also on a sugar-free diet and taking oil of oregano to kill off the yeast; yeast can really wreak havoc with your system, and LDN can bring it to the surface. I'm also taking 2 tablets twice a day of an anti-inflammatory herb (this concoction is called Cox 2), and 1 tsp fish oil, probiotics twice a day, and a multi-vitamin. I continue doing chi gung every day. I am also using foot detox pads, and doing the writing exercises in the book "Healing Lupus." Those exercises are about releasing toxic emotions.

It's not a very scientific approach; a scientist would change only one variable at a time, so he could figure out which change was the most effective. But I don't feel I have the luxury of time on my side, so I'm using numerous strategies together, in hopes that I can turn things around quickly and remarkably enough that I can avoid the prednisone.

In November, I met a guy who was a fan of my music for 5 or more years. He didn't realize I'd had so many health struggles (guess he missed my 3rd CD- every song on there is about medical stuff!). He's been on prednisone 15 years straight. No one told him about the long-term ramifications of taking prednisone (they are so serious I don't think the words "side effects do them justice). He has gout and diabetes, caused by prednisone. Or as the medical community would call it, iatragenic. meaning, caused by medicine. Kind of messed up that it happens so much- diseases and injuries caused by "treatment"- that they have a word for it.

My one unscientific observation I can make about my progress since the blood tests is that my shoulder pain finally let up today (knock on wood), for the first time since early november. I've been in constant pain since early november, and unable to take painkillers because they are incompatible with LDN. So just for today, I have a little relief. And it feels weird, like a friend (one who I can't stand, but got used to) is missing. Let's hope this friend stays gone. He's spent too much of the last 18 years hanging around contributing nothing good.

update 2/1/10 Happy to say still almost completely free of shoulder pain. Every now and then a little twinge will creep in at the end of the day, but I'd say it's 95% gone, thank heavens! Unfortunately, it seems to have been replaced by nightly headaches, If I must choose, though, I'll take the headaches. Clearly what I am doing is still not quite enough, so I'm going to try to get an acupuncture appointment this week. That always helps.

update 2/7 the headaches left and the shoulder pain returned. After almost a year of non-stop pain between fibromyalgia, morton's neuroma, back to fibro and headaches, and the resulting sleep deprivation and loss of morale, I decided the LDN is going to have to take a back seat to me keeping (or locating) my sanity. So I am stopping the LDN so that I can take narcotics for pain relief. I have returned to acupuncture, in hopes of getting the pain back under control so that I can get back off the narcotics, and back onto the LDN. Meanwhile I continue to take Oil of oregano to kill off the yeast, so that when I go back on the LDN, it will be more effective. I'm also taking a pile of other supplements/ herbs: liquid DHEA, olive leaf extract, garlic, MSM, liquid Vit. D, multivitamin, fish oil, probiotic, flaxseed, and curamin. And my BP med and attivan at night. If everything fails and I'm not any better at my next appointment in a month, I guess I'll do the dreaded and get a cortisone shot. We've always got that as a last resort. Who needs bones, anyway, right?