Friday, February 26, 2010

Another Lupus ebook

Hey friends
In my never-ending quest for better answers (better than drugs, side effects, more drugs, more side effects, ad nauseum and add nausea), I just purchased another ebook claiming to have some ideas of where lupus comes from and how we can get rid of it.

It was overpriced and didn't tell me anything i hadn't heard before, but it did remind fo some things I'd forgotten, and it did introduce me to a really neat idea for how to "brainwash" myself into achieving my goals, both health and otherwise.

Now the guy who wrote this thing is not a doctor, and does not have nor did he ever have lupus. And all his info was gleaned from 500+ websites and other people's e books, and listening to Tony Robbins. So there's your pretty big grain of salt. But hey, it's worth $47 to have someone sift through 500 websites and give me the summation.

He claims that most fo the diseases that are rampant in our society are lifestyle-caused. Caused by what we eat, mroe than anything. Despite the fact that this goes against what we're told by our doctors and by all those commercials for drugs on TV, this is not that radical of an idea, and lines up with everything I read in Eat To Live, which was written by an actual doctor who actually read 2000 medical studies.

In short, this author's (Mark Anastasi's) approach to ridding yourself of lupus (and pretty much any disease is this:
1) read his e book (I consider that optional, unless you don't know anything about lupus and have never heard the idea that poor diet and an acidic environment in your body cause disease)
2) do a detox (pick a program and follow it, probably best to be supervised)
3) take supergreens
4) take glyconutrients
5) buy his subliminal power software, which flashes positive subliminal messages randomly on your comptuer screen (you write the messages). this program is $39 (I am not paid to endorse this)

For me, it was a reminder about supergreens, the first time I'd heard about taking glyconutrients as a supplement (as opposed to just eating more fruits and vegetables), and an introduction to an interesting software program, which I might buy. After I recover from spending $47 on his book.

I had getting some contradictory information that disease thrives in acidic environments and yeast thrives in alkaline. It seems it may be possible, to have both acidic and alkaline conditions in one body; different systems can have different pH.

Found some good answers on pH here:

Monday, February 15, 2010

back to what worked before: acupuncture

Some of you have been following my recent struggles, fighting off a lupus flare while trying to avoid going on prednisone and losing my hair, gaining weight, and turning into a raving lunatic (gee, what's so bad about that?)

For the last 3 months I was on LDN (Low dose naltrexone), which has worked wonders for a number of people, particularly those with autoimmune conditions, and especially those with lupus. But for whatever reason, it was not helping me. In fact, my test results got worse. There are those who say I didn't stay on it long enough, and those who say I might have a thyroid problem, and those who say it's a candida (yeast) problem (that interferes with the LDN's effectiveness). But bottom line, as long as I was on LDN, I could not take any narcotics for pain, and since I don't have anything over the counter that I'm allowed to take that actually works for pain, I figured 3 months of constant pain with not relief constituted me giving it a pretty good chance to work.

Now, I'm not saying LDN doesn't work, or even that it wouldn't work for me, but it isn't working for me right now, so I had to change course. Maybe once I finally clear up all the yeast, I'll go back on it. Meanwhile, I figured, I created a remission last year using just chi gung, gluten-free diet, no nutrasweet, and acupuncture. I got discouraged because my remission only lasted 6 weeks due to a combination of stress and a black mold exposure. So, I guess I wanted an easy answer- just take this non-toxic drug every night for the rest of your life, eat and do whatever you want, and never have another flare. I wanted a magic pill (or in this case, liquid).

Well, as I've stated before, thankfully there are plenty of choices out there for paths to healing, and I'm going back to the one that worked for me before: acupuncture & chi gung. i've added some herbs I read about in "Cure Your lupus naturally," and I'm still gluten-free and nutrasweet-free. And it only took one acupuncture treatment for me to feel a little better. And now that I've had 4, I feel a lot better.

A word about acupuncture: some MDs also do acupuncture, but the only training they've had is a weekend clinic. "Real" acupuncturists have 4 *years* of training. Sadly, insurance will pay for the MD acupuncture but not the more effective real acupuncturists. So, good acupuncture is an out-of-pocket expense. Which is why I also do chi gung; it has the effect of very gentle acupuncture and you can do it yourself for free, and maintain your level of wellness between acupuncture visits.
A good acupuncturist is Chinese-trained and board approved by the NCCAOM. Go here to find one near you:

So, between the acupuncture and being able to take a narcotic when I'm in pain and can't otherwise sleep, I feel like myself again. I was really in a pit of despair after months of non-stop pain, and was losing my sense of humor, and becoming hopeless and defeated. That is so not me, but it goes to show you, a person can only take so much. Why suffer? My goal is to again get all my tests to turn around to "negative" (in this case negative is a good thing), to feel energetic, and to maintain the remission indefinitely.

There are 2 other elements I also want to deal with: emotional and diet. Although I avoid a lot of nasty things like gluten and sugar and nutrasweet, I need to eat a lot more fruits and veggies. Which is why I may be purchasing Montel Williams' healthmaster (an industrial blender basically)... Secondly, I'm trying to get into a reevaluation counseling group. If I do either/both , I'll keep you all posted.

Tuesday, February 2, 2010

Many paths to wellness

Right now I'm in the middle of reading my 4th, 5th and 6th lupus memoirs. 7 if you count the Lupus recovery diet. (did you know there were that many out there? yup).

I try to read without an agenda, but the fact is I always have the same agenda: did they get better? How much better? What did they do that I would want to also do? What did they do that I wouldn't touch with a 20-foot pole?

OK so here's the list of lupus books I've either read or am reading:
1) Heartsearch
2) Lupus Novice
3) Healing Lupus
4) Lupus: Alternative Therapies that Really Work
5) Cure Your Lupus Naturally (an e book)
6) Despite Lupus
7) Lupus Recovery Diet

Here's a really really brief "what I get from this book" for each of them:

1) heartsearch- has settle for having to dial things back a bit on a permanent basis. Got some relief from eurhythmy, an emotional release technique that was big in the 70s but not so big now. if you really search you might find a group near you. Some of the buzz on the internet accuses it of being a cult (whatever).

2) lupus novice- believe it or not this person also used eurhythmy. maybe she read book #1.

3) healing lupus- here's a person whose lupus was really really bad and who claims to be completely healed since 1978 (!) by going through emotional release. she was on a lot of powerful drugs for a long time to control the illness, btu was never successful at cutting back the amounts until she had an emotional breakthrough via reevaluation counseling. her book is filled with writing exercises. she suggests putting together a book group to go through it together. i don't even know how to begin finding people with lupus who are both open to the idea, nearby enough to get together, and willing to work as hard as the book asks you to work, so i'm going through it alone. But I also put in a call and hope to join a reevaluation counseling group here in my town.

4) lupus: alternative therapies that really work. this one is really into detox, and herbs and such. it's been a while since i read it.
some very specific and practical suggestions in this one. need to reread it.

5) cure your lupus naturally (e book by cheryl dowery) i just bought this last night. can you tell i'm desperately searching for help right now? because i just can't stand the thought of going on prednisone, or worse back into the hospital AND on prednisone. I'd have to sneak out in my street clothes every night for dinner. just can't deal! Anyway, I was in a weak moment and bought this somewhat overpriced book online last night. It's only 30 pages and is priced at $29.95. But if you go to the webpage and wait a few minutes, a window will pop up allowing you to buy it for "only" $19.95. i figured what the heck, if it really has a magic cure then i can think of a lot stupider ways to spend $20. Her claim of a cure is not really accurate; she acknowledges that you still have to monitor yourself and pace yourself; you can't do her regimen of herbs, etc. and then go get a 60-hour a week job and run a marathon (why, after 18 years living with this illness do I still hold that up as an attainable goal? Well, I do). Most of her ideas I had heard before, but not all. Affirmations, of course, improve your diet, of course, check for allergies, yup (she has an interesting way of doing it at home, no cost); detox, yes, Fish oil and flaxseed, probiotics, DHEA yes (though I didn't have the more effective liquid form of DHEA). And she did come up with a couple herbs I hadn't heard of/ tried, and one that is so gross I won't consider it. Maybe I need to be just a little more desperate.

6) despite lupus. this book is very by the book. what i mean is, reading this book is like going to 6 years' worth of (good) support group meetings. She's going to try to help bring you back down to earth, which in many ways is good, but she repeatedly tells you not to waste your time on stupid things like trying to get cured of lupus. Maybe I'm just an ass, but I can't accept that there is no cure. I can certainly accept that there is no MD who has a cure, but I can't accept that there is no help for me outside of prescription drugs and trying to acoid stress and sunlight. Anyway it's a good book, I just take issue with that one point, even if I am causing myself needless suffering by refusing to accept my situation.

7) lupus recovery diet. here's another book i spent too much money on; i bought it as an e book. it has a number of testimonials and lupus stories in it. I've been living with it 18 years, I don't want to read yet another biography of someone's struggle with the same symptoms. I don't even watch Sanford and Son reruns more than twice, and those are funny. Anyway the whole point of this book is this: lowfat vegan diet. there. there are some recipes, etc., but if you just want the punchline, that's it. BTW this idea is the same as the one put forth in Eat to Live by Joel Fuhrman, MD

so in summary here is what we have so far from my reading in terms of how to get that nasty illness under control:
1) emotional release via eurhythmy (and prescription drugs)
2) emotional release via eurhythmy (and prescription drugs)
3) emotional release via reevaluation counseling (and prescription drugs, but she does permanently get off the drugs, for decades now)
4) detox and herbs and diet
5) detox and herbs and diet/ allergy avoidance and affirmations
6) drugs, stress avoidance, support groups, compliance with doctor
7) lowfat vegan diet

(and as a PS, though there's no book on it for lupus, there is low dose naltrexone, which I'm on, but that non-toxic drug is not suggested as a "stand-alone" treatment; It's supposed to be combined with supplements, herbs, diet modification, etc.)

there you have it. 7 paths to wellness, or at least not-so-sickness. Could they all be right? yes, I think they could, just as maybe as the Native Americans say (about religion), many fingers point the the same moon. Can I follow all those paths at once? Probably not. After all, I'm dealing with an illness! There's only so much of me to go around.