a more NATURAL way to control Lupus?

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Mogaly
Regular Member


Date Joined Apr 2007
Total Posts : 28
   Posted 4/13/2007 8:14 AM (GMT -6)   
Have any of you attempted a more natural way of dealing with your Lupus (ie. homeopathy/naturopathy/alternative/other)?  If so, I would love to hear about your experiences.
 
Some of my experiences, include:
 
1. Going to see a Naturopath.  Once I heard that he was telling people he was Jesus confused   I promptly stopped seeing him.  Weirdo.  His herbs and services did nothing to make me feel better.
 
2. Going to see a Naturopath/MD (yes, they do exist!).  His products and services were so expensive, there is no way I (or my Mom) could have afforeded them.  He was really nice, though, and had a wonderful reputation.
 
3. Using Nikken magnetic products.  Now some of you may think think is just some New-Age bogus fad, but I truly don't.  (When I'm not travelling) I still use the Nikken sleep system (mattress and comforter), as well as the water bottle.  I can't say using these products alone helped me into my (former) remission, but I truly believe that combined with everything else, they did).
 
4. Accupuncture.  I swear by this.  I got it done weekly, then eventually only when I needed it.  I got it done for my hand mobility, and it helped wonders!
 
5. Vitmamins.  I started taking a multivitamin, along with a Calcium/Magnesium supp, and Omega 3/6/9 supp.
 
6. Massage.  The woman I get my massages from is very spiritual.  I believe that her work on me really helped me to bring me up when I was feeling down.
 
7. Prayer.  I remember when I was at work one day, a lady came up to me and said, "You're Jen ******, aren't you?"  And I said, "yes". And she said, "I just wanted you to know that every Sunday in our prayer circle at church, we pray for you".  To this day, I still have no idea who that lady was.  I never saw her again......  Just that experience alone, lifted my spirits.
 
 
My Mother was diagnosed with Lupus last year.  Some of her ways of controlling the symptoms, include:
 
1. Biofeedback.  This is amazing!  I thought it was just a bunch of hocus-pocus at first, but when I went to a session with my Mom, I became a believer!  (I will definately be doing biofeedback treatments when I return home from my trip).
 
2. Ionic footbaths (to purge the body of toxins, heavy metals, and tension).  Again I thought this was kind of weird at first, but again, I quickly became a believer! (I will definately be doing ionic footbath treatments when I return home from my trip, as well).
 
 
 
What are your experiences? :-)
 
~Jen~


karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 4/13/2007 10:18 AM (GMT -6)   
Jenn
 
I have seen a natropathic dr also.
 
I take fish oil along with an allergenic free multi-vitamin, and a high count/multi-strain probiotic.
 
I also do yoga and get a Myofacial Massage every 4 weeks - which does wonders for my Lupus/Fibro pain.
 
I have done Accupuncture which was wonderful for pain and fatigue, but unfortunatly I couldn't afford it and then when I thought about it again she had moved even futher away, she was also Traditional Chinese medicine and a MD - so the balance was really good.  I miss her and the treatments.
 
I also eat a healthy diet - lots of veggies, organic meats and veggies and fruits, I notice that I seem to be very sensitive to the "sprays, etc" on the non-organics sometimes.
 
I also do not eat anything that contains gluten in it - I also have Crohn's disease and it has done wonders to cut the gluten out.
 
 


Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Meds:  Lunesta 2mg, Flexeril 10mg as needed, Immuran 100mg, Plaquenil 200mg, Probiotics, Multi-vitamin, fish oil
 

Post Edited (karasmommy) : 4/13/2007 4:03:36 PM (GMT-6)


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 603
   Posted 4/13/2007 3:17 PM (GMT -6)   
I treid homeopathy while I was in HK. He was a very good doc and never rip you off. He never sold those natural products to me nor trying to sell at all. When I could not pay, he would take me for free. He gave me those medicine that is little white ball like pills. And they worked wonder. My lupus was under control and no need to take medication. However, he migrated to Beijing and I had to return to regular Rhumty.

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 603
   Posted 4/13/2007 3:20 PM (GMT -6)   
by the way, I also tried Chinese Herbalist, but not working good for lupus. It did heal my stomach problem which caused by medication.

montecarlo
Regular Member


Date Joined Feb 2007
Total Posts : 235
   Posted 4/13/2007 3:51 PM (GMT -6)   
I have been having great success with my Dr. ! Dr of -Traditional Chinese Medicine. For the past 11 days,I have had daily acupuncture(Abdominal)
and herb tea. He grinds it daily and makes changes when necessary.
Truly,this DR is amazing!! I actually stay awake during the day,managed to go for a walk with the 3yr old (1st time in 5 months),the burning sensation is to a minimum,I have minor aches in my eye verses unable to be without sunglasses/closed blinds\closed drapes and migraine-no swelling in joints,literally feeling 90% + ! My voice cracks when I talk about the difference from two weeks ago,it is night and day.
The biggest problem is my liver then my kidneys ,low back and hip.
When I went for the ulrasound,they thought I was going in for surgery,so I was put on a drip line-5 1/2 L ,later,my bladder still wasnT full,not a single doctor did anything other than tell me my kidneys were shutting down,gave me an IV for pain and sent me home!
I still have some kidney pain-but nothing like before! It hurt to wear clothes,and slowly,each day there is a little less pain and more normalicy.
I couldn't begin to express what a diiference this is making in my life.
I will continue with the daily treatments as long as necessary-there are no pills,no side effects.Though will continue to ''buy back my life'' as I call it,it is worth it-either way I will pay,but if this heals internally,it is so worth it! Lupus has no cure,and my DR doesn't claim to,he is just trying to get it to a controlled state,and hope it will result in remission.
I would back up this method 100%-
as for the acupuncture,everything is measured meticulously daily(with a ruler) . My endodontist also uses DR.HUANG for treatments and tea as well. I couldn't say enough about this,it has given FAR BETTER results than any pill I took-and I would HIGHLY recommend this-but please take the time for a decision- Best of luck! CRYSTAL

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1224
   Posted 4/13/2007 10:40 PM (GMT -6)   
If any of these treatments worked everyone would be doing them and symptom free.  They are all good for one reason or another for general health and well being but not for controlling our immune systems.  Those of you who have had relatively mild cases should know how seriously ill you can get in a matter of days from AI diseases.  I was a good example but fortunatley survived.
 
I would not take a chance of not being on a controlling med for a very long time.  There is a strong possibility that my case might have "burned itself out" but I am weaning off of meds very slowly.  None of the alternative treatments have been proven effective and the evidence for them is anecdotal.
 
Some of you will disagree with me and say that the medical community is against such treatments but that is just not true. 
 
I have hope that better and less draconian treatments and even cures will be found in the next few years.  There is great promise but it will take some years.  If you do not receive early diagnosis and effective treatment your prognosis is not as good.  I would trade the risk of potential med side effects to a reoccurance of my disease any day.  Life is good now.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
 
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, 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
 
 


Mogaly
Regular Member


Date Joined Apr 2007
Total Posts : 28
   Posted 4/14/2007 7:06 AM (GMT -6)   

I find it so fascinating how different things seem to help different people.  Alternative medicine is such a controversial topic with some crowds (but heh, what topic isn't these days? eyes ).

Bill - I can appreciate your difference of opinion.  Alternative medicine isn't for everyone, I guess.  I do however really like the one line in your signature that reads, "Maintain your optimisim and you can beat the odds".  I truly believe people's attitude has significant power.

Thanks for the input everyone!

:-)  


~Jen~


karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 4/14/2007 3:43 PM (GMT -6)   
I don't think that anyone said that they ONLY use alternative medicines to treat their diseases. 
 
I use the balance between the two, I can't go off my RX medicine, but I have been able to decrease the dosages on some of them with my diet changes and my vitamins, etc.
 
Everyone is different in what works for them and everyones disease is different also - stages and medications.
Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Meds:  Lunesta 2mg, Flexeril 10mg as needed, Immuran 100mg, Plaquenil 200mg, Probiotics, Multi-vitamin, fish oil
 


montecarlo
Regular Member


Date Joined Feb 2007
Total Posts : 235
   Posted 4/14/2007 4:14 PM (GMT -6)   
My daughter had an eye condition starting at 18mos,she had rounds and rounds of surgeries and medications to ''control'' her condition,she was slowly loosing her sight and by age seven,they weren't sure if she would one day loose her eyes. She is now almost 18 yrs,and after 12 years of medications,she ended up with liver damage,we were told by the doctors there was nothing left for them to do....she did see a Dr of (traditional ) Chinese medicine,and is doing fine-not even glasses,it didn't happen overnight or easily,but it worked.
The body is healed from within,therefore the disease is more likely to be controlled. After years of medications for one thing or another,I have damage to :spleen,kidneys,liver,eyes,heart....I also have cancer for the 3rd time....when doctors tell you there are little options left,I had to make a choice. I already have gone down the addiction path,medications to control pain are no longer and option,I had been admitted to hospital for suicide watch-not being able to control the pain has its cost-
I had many difficulties with medications,it is not normal to vomit what looked like coffee grounds,and when I was only half lucid,it is a worry
that our youngest would somehow get into the meds-some look like candy to a 3 yr old.
The chinese have practiced their form of medicine for well over 3000 years,clearly,for some it helps,some it works completely.
I go for treatment DAILY,my case is not minor,nor simple,but I have hope for the first time in many years.
My heart goes out to anyone who had an unfortunate experience with alternative medicine,it may not be everyones answer,just as with the shoe on the other foot says,western medicine was was not helping me,who knew when an allergic reaction would leave me dead.
I beat cancer twice before,my son didn't,and neither did my brother, so I have a hard time believing ''medications'' help every case.
I knew it was a matter of time before I walked across the room one day and took either too many,or just the wrong combination.
ALL I HOPE IS EVERYONE FINDS SOMETHING, WHAT EVER IT MAY BE,TO HELP. may there one day be a cure for this AI disease and others.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1224
   Posted 4/14/2007 4:30 PM (GMT -6)   
Ellen,
 
Good point.  I did not say that either.  My only point was that the only proven way to control our immune systems are various meds and even those do not always work.
 
However, there are many people who will not take meds or have stopped and are having trouble and searching for ways to control their disease.  My comments were directed at those considering no meds at all when they have an active disease state.  There are several in our local support group and only one of them have a valid reason to not take meds.  That person has problems with almost all meds and as a result she is not doing well at all.  It is not a good situation.
 
I have made many small changes in diet and supplements and would make others if I could be convinced that they would be beneficial.  It is possible that some of these supplements and alternative treatments might be shown effective.  For now I am personally sticking to a fairly well balanced diet and some vitamins and supplements. 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
 
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, 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
 
 

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