Treating Lupus Naturally

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peacesoul
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Date Joined Jan 2007
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   Posted 10/5/2008 10:44 AM (GMT -6)   
I'm doing/taking a natural approach as are others I've spoken to with treating lupus, and was wondering if any of you here are also taking a natural approach? If so, how and what are you doing?
 
thanks
 
Jen
The world breaks every one and afterward many are strong in the broken places


lucysgd
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Date Joined Jun 2008
Total Posts : 663
   Posted 10/5/2008 1:32 PM (GMT -6)   

Hi Jen - I've been having a rough time the last couple of years.  Still in AI dx limbo.  My rheumie wanted to start me on Plaquenil the first time I saw her - but I wasn't ready - been dodging all kinds of meds for years.  My fibro and unexplained liver problems make it hard for me to take meds - so I keep searching for natural approaches to the problems/symptoms. 

I saw a homeopath for about a year -without much help.  I get the most benefit with muscle/pain symptoms from massage therapy (3yrs)- but it's very temporary and expensive.  I'm currently trying acupuncture.  My rheumie encouraged trying it.  I've had 4 treatments, with the traditional chinese herbs/teas.  Generally, I've felt no better - and even a little bit worse for a few days after treatment.  Was getting really discouraged - and then after the last one - I suddenly started feeling better.  More energy, less fog, less pain.  Still not "all the way home" (which I'm not sure I remember what that feels like) but definite improvement.  I had been told by a couple people and from research that it takes at least 5-6 treatments to begin to feel appreciable benefits.  I'm hoping that's the case, and I'm on my way. 

That said - during the 4 mos. I've been rec'ing the acupuncture, I've had two pretty bad flares - relatively short-lived in the acute stages - but difficult nonetheless, and seemingly more directly associative to Lupus.  So either the "thing" has just generally been ramping up for the last couple years.....or ......?

I also use meditation time with my ipod for relaxation and it seems to help.  I try to stay away from dairy, sugar (very hard!) too many raw foods, alcohol and caffiene.  The acupuncturist advised that my Ph was overly acidic, so I stay away from acid producing foods also.....which seems to help my GERD.  I walk for exercise - anything else is too much, it seems, even though 4 years ago I was doing 60 min. of aerobic exercise with weights 3 x wk AND walking 4-5 x wk.  I had a back injury (herniated disc w/ nerve involvement) in 04 and it seems nothing has been the same since.  The back problems hampers the other problems and vice versa.

I take a multivitamin, calcium, malic acid (just started that based on recommendations here) and a garlic supplement.  Also fish oil (Omega 3).  I see my rheumie in Nov. ( I cancelled an appt in Sept. because I was feeling better) and will see what she says about Plaquenil then.  I have another acupuncture tx this month. Hoping things will improve even more - but if they don't I'm ready to give the Plaq a try.  Winter always increases symptoms and is tough to get through.  Wishing I was feeling a little sturdier going in. 

Now that I've rambled on and on and on....what do you to/take to manage your symptoms naturally?

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


peacesoul
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Date Joined Jan 2007
Total Posts : 2438
   Posted 10/5/2008 8:20 PM (GMT -6)   
Lucy, that's AWESOME! You really are intent on getting well. It's so rare to see people with illness who work hard on finding alternatives to getting well.
Kudos to you.

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. In other words, I'm in therapy to work on my emotional state in order to heal my body.
I'm a firm believer that emotional stress causes illnesses (flares)
Many people do not believe this, but these are the people who stay ill for life.
I've spoke with many people with all different illnesses who got well when they strengthened their bodies and healed the mind/body connection.

From my journey, I've also decided to leave my stressful job and am now taking courses to get my naturopathic certificate.
I'll hopefully heal me so I can try to help heal others.

Thanks so much for your post. Please keep sharing as you continue. I would love to know how you progress

Hugs

Jen
The world breaks every one and afterward many are strong in the broken places


Bsime
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Date Joined Apr 2006
Total Posts : 1224
   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
 
 


peacesoul
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Date Joined Jan 2007
Total Posts : 2438
   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


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   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


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   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

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   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


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2438
   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


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2438
   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


Barbara Lee
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Date Joined Sep 2003
Total Posts : 2813
   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.


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   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


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1224
   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
 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   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

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   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


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   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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