Posted 10/5/2008 10:32 PM (GMT -6)
You must have a mild case to be able to treat your disease with a "natural approach".  I would have died within days without modern medicine.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 

Posted 10/6/2008 8:54 AM (GMT -6)
Bsime said...
You must have a mild case to be able to treat your disease with a "natural approach".  I would have died within days without modern medicine.
 
Bill

Yeah I must have!
 
The world breaks every one and afterward many are strong in the broken places

Posted 10/6/2008 1:09 PM (GMT -6)

Thanks for the encouragement, Jen - it's good to hear!  I'm sorry Lyme and Lupus have gotten hold of you, and the traditional treatment protocals didn't work for  you.  Your strong spirit comes through, though - very positively - and I agree with what you say about our emotional issues affecting our wellbeing.   Actually, I think any kind of stress (it all gets processed emotionally in the end) affects our vulnerability and response to illness.   I also think that many times our symptoms do get masked in the early stages by a variety of meds - which really doesn't help the process of discovering the root problem.

I do, of course, acknowledge that traditional meds are oftentimes a Godsend and can be lifesaving, and/or life-changing.  And I will admit that at times, I wish my body responded better to medication.  Like you - the medications I have tried (for everything) made me worse - and that list includes Celebrex, Statins for high cholesterol, Neurontin, Flexeril, Niacin, and on and on.  I can't take a large number of antibiotics or any kind of decongestant/antihistamine, and my dentist doesn't use epinephrine in the novacaine when she works on me.  Through the years I was forced to listen to my body and recognize that drugs were not going to be the answer for me.

Congratulations on your decision to become a healer!....  the world needs all kinds of approaches and perspectives.  That's why I love this forum...all kinds of folks with a variety of experience and wisdom to share.  We have so much to learn from one another!

I hope you'll let me know how things proceed with you, and I'll do the same.  Good luck with your studies!

Hugs and blessings,

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

Posted 10/6/2008 6:52 PM (GMT -6)
I think this is a good topic, and many folks here have been helped by "natural" medicine. But I need to insert a couple warnings:

Over the years, several horror stories of members going off their meds in search of more natural cures have been posted. The results have, at times, been devastating. I just caution everyone reading this topic NOT to go off your meds without consulting with your doctors. Even if they don't agree with your course of action, make sure they know what you are doing. Also, we all need to include all of our natural remedies in our meds list each time we see a doctor or go to the hospital. There are some supplements and remedies that can be dangerous in combination with other treatments. Even vitamins should be reported at each visit.

I'm very interested in this topic myself and like to read what is helping other members . . . so I'd like to say again . . . this is a good topic.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted 10/6/2008 8:54 PM (GMT -6)
Like Bill, i've had several close calls and without modern meds and the grace and mercy of God, I wouldn't be here today! Be Careful! Judy
Posted 10/6/2008 9:53 PM (GMT -6)
Thanks, Rosie for adding those cautions - which I agree are extremely important. 
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

Posted 10/7/2008 9:17 AM (GMT -6)
Judy, may I ask what people should be careful of?

This is not a thread stating to people to not take their meds, it's simply showing that meds are not the end all to illness.
I'm just curious, should people be careful of what? Changing their diets to strengthen their bodies or to be careful to do some exercise?

I'm not just very clear why you're warning people to be careful
The world breaks every one and afterward many are strong in the broken places

Posted 10/7/2008 9:23 AM (GMT -6)
And by the way, Bill has decided that my lupus was not as severe as his. His decided this w/out knowing me or who I am.

I was bed ridden for years with chronic pain, fatigue, joint swelling etc. I never even knew at the time I had lupus. I thought I was just overweight and lazy. So when I changed my diet, started to exercise and take suppliments, I got 95% better and functional.

When I had another "Flare" back in April of 07, I was finally dx with Lupus. I had to leave my wonderful job and start to heal again.
And once again, I revamped my diet, started on some herbs (I was also dx with lyme so took abx and herbs to fight it), and slowly started exercising again after having to take months off due to the pains of lupus.

And once again I am functional.

I'm not telling people to take some hocus pokus medcine to get well and not take all the toxic meds dr's rx, all I am saying is, with EFFORT, people can heal naturally. Our bodies are wonderful tools that know how to heal if we just give them the right tools.

So those polluting thier bodies with Steriod and Plaq for an illness dr's know nothing about, be careful <--- see how silly that sounds!?
The world breaks every one and afterward many are strong in the broken places

Posted 10/7/2008 10:04 AM (GMT -6)
Hello Jen:

I see you've asked about Rosie's caution to going the natural way. Rosie wasn't in any means suggesting that a good healthy diet and exercise was bad for us. She was however, reminding us that there are certain herbs that we should avoid. Having lupus means that our immune system is over working and causing our bodies to attack itself, which I'm sure you already know this. The drugs we're given are to suppress our immune system so that our lupus can be controlled. There are many herbs that actually cause the immune system to become stronger. When taking these herbs it has been noted by a lot of people that they have become very sick taking these types of herbs.

I've had lupus for 20 years and I've tried the natural approach. I did massage, exercise, took herbs and teas that my acupuncturist recommended, I tried the Herb a Life diet. I was so ill from taking the herbs and teas that were given to me I nearly died. That being said I'm very sick yet again, however I've got more than Lupus going on. Having lupus and blood cancer is a poor combination, and I know that unless I get my bone marrow transplant I'm going to die sooner than I probably would have. I have to say if I were counting on the natural way to heal me now I'd be very foolish. I'm not saying that going the "natural" way is wrong, but going with the medications offered, isn't wrong either. It's all a matter of personal opinion, I certainly wasn't offended by your post asking about going the natural way. The fact that Rosie mentioned that we need to be careful using herbs and supplements wasn't wrong either.

I'm sorry that you were offended by the response you had, but please remember that we're all here to share and offer up "our" experiences. The end result is our choice, and no one can live our lives for us. I'm sure Bill and Rosie meant no "offense" and I will say I don't mean any "offense" to you Jen. I only wish you the best and I truly hope that you're able to treat your lupus the natural way.

Good luck,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Posted 10/7/2008 10:18 AM (GMT -6)
Peacesoul . . . I understood Judy to say that w/o meds, she may have died (she was hospitalized and in a really bad way). Bill was near death and his body had declined within weeks (BEFORE he was on meds). It was lifesaving meds AND a physical therapy program that helped him recover to a remarkable degree.

peacesoul said...
. . . Meds mask the issues, your path you've chosen is going to take a little longer for relief, but with a program like you have here, you're going to get well and stay well.

I was given plaq when I was first dx and it made me more sick. It threw me into a tailspin. I was also dx with Lyme after the lupus and tried more meds and again, got much sicker.

My approach now is exercise, suppliments, clean diet (like you have), and mind/body connections. . .

Some of your comments DO make it sound like you believe meds are evil. (you say "toxic meds" and "polluting their bodies with Steroid and Plaq" even after you stated "This is not a thread stating to people to not take their meds") Some meds don't help some people. We each need to find the healing path that works best for us.

We just need to make sure that folks don't read this topic and stop taking their meds. Each of us needs to carve out our treatment plan WITH the knowledge and help of our doctors.

Its great to hear what has worked for you . . . but we don't want to slam other treatments.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted 10/7/2008 11:25 AM (GMT -6)
peacesoul said...
And by the way, Bill has decided that my lupus was not as severe as his. His decided this w/out knowing me or who I am.

I was bed ridden for years with chronic pain, fatigue, joint swelling etc. I never even knew at the time I had lupus. I thought I was just overweight and lazy. So when I changed my diet, started to exercise and take suppliments, I got 95% better and functional.

I have not decided anything about your case.
 
Maybe your problems were the result of your eating habits and lack of exercise and eating well and taking supplements corrected those things.  I was healthy and ate properly but my case was life threatening and there was no time to try anything else.  I lost 40 lbs of muscle in a week and was about to die of liver failure.  The caution that many of us make is to not underestimate the power of lupus and other auto immune diseases.  Sometimes it takes prednisone, ivig, or something else to tranquilize the immune system.  Every case is different and some are mild, some chronic and some severe and life threatening.
 
Complementary approaches are good for anyone as long as you do not take supplements that interfere with meds or cause other problems.  Herbs and other supplements are not regulated and ingredients and strength is not always known.  Many of these are powerful meds themselves even though not sold that way. 
 
We are all glad that your health has improved and none of us want to take anymore meds than is absolutely necessary.  But your posts have a negative tone to standard treatments which have benefitted millions of AI patients and saved many lives including my own.
 
It is my hope that I can get off all controlling meds in the future but I will still need some meds to control several condtions caused by my diseases.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 

Posted 10/7/2008 12:35 PM (GMT -6)
I am sorry that you obviously took great offense to what I said. I agree with Bill and Rosie, i'm just not as articulate as they are!  I too was eating right and walking 4 miles a day when I developed life treatening complications from Lupus. I respect medical Science.  At the same time, I agree that we should do everything within our power to help ourselves. Frankly, i'm not sold on herbs & supplements.  It is a highly unregulated field.  I sincerely wish you the best in whatever path you feel is right for you. Judy
Posted 10/7/2008 1:12 PM (GMT -6)
Yup, me too . . . I was walking 3-4 miles e/o/d and eating healthy, training for another backpacking trip when I had my first big flare.

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted 10/8/2008 6:57 AM (GMT -6)
Peacesoul
 
What works for one doesn't neccesarily mean that it will work as well for someone else, but everyone has the right to choose what they put into their body. I don't think anyone was trying to dish you at all for believing that natural is the way for you to go, they were simply stating that for others, the traditional way with modern medicine saved their lives and without it, they wouldn't be here. As far as I know herbs aren't regulated so you really don't know what is in them and how it will affect you.
 
As long as you do your research and feel comfortable with the path you have choosen then that is up to you. Good luck with going natural, I hope it works as well as you want it too.
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

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