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GC Lim
01-24-2009, 08:54 PM
has anyone tried alternative therapy like NMT (NeroModulation Technique) or TCM or Homeopathy ?

Sangye
01-25-2009, 02:39 AM
I'm a chiropractor, so I'm familiar with alternative treatments, including the ones you mentioned.

The key factors about Wegs is that it is highly unpredictable, it can cause permanent damage to a wide range of organs, it often does such damage silently, and without successful treatment it's 100% deadly. For these reasons, replacing medical treatment with wholistic is unwise.

Not true for all autoimmune (AI) diseases. Two AI diseases with a long history of being successfully managed wholistically are RA and MS. (Many times they can even replace the drugs. There are also cases of very early MS being cured wholistically.) Neither RA nor MS are as unpredictable as Wegs, neither causes extensive organ damage, and neither is fatal. So there's more room to work with them and try other treatments without causing harm.

A number of wholistic treatments can help us with Wegs. They must :
1) Not deliberately or incidentally cause our bodies to detox the drugs (we need them)
2) Not "boost" the immune system, since that goes counter to the drug treatment
3) Accept that you need the drugs to stay alive and safe. This is a tough one for wholistic docs, because the Wegs treatment goes against everything we believe in!
4) Understand that the info about successfully treating other AI diseases does not apply to Wegs-- there are no cases of successful wholistic treatment for Wegs.
5) Understand that this isn't like cancer treatment, where you would do everything possible to boost the immune system, detox chemo, etc....

It took over a year to diagnose my Wegs because I pig-headedly refused to go to a medical doctor. I did more therapies, more supplements (at the end I was downing 80 pills a day), you name it. Even my naturopaths said they'd run out of therapies to try. And I was going downhill every day. I almost died. For me that was good, since it really got it through my head that I needed the drugs!

I do believe that wholistic treatments can be part of our whole care. I get regular chiropractic care, regular acupuncture, follow an Ayurvedic regimen, and take some supplements (not much!). I used to do a lot of homeopathy, but my homeopaths say it's not safe with Wegs. The couple times I've tried (still got that stubborn streak) I had nightmarish reactions.

I don't personally care for techniques like NMT that promise "instant cures." I'll be direct-- I think that's reckless, arrogant and dangerous. I've seen them do some real damage to patients, stringing them along while they were clearly in jeopardy. (They never list those testimonials, though!)

Anyway, whatever you choose I hope it brings you excellent results.

Carol
01-25-2009, 05:59 PM
Dear GC Lim, I decided not to go along any alternative path with this disease - I felt I couldn't take the risk. I do however take "Nerve support formula" which I have to import from America for my nerve damage in my feet. - it's a B Vitamin supplement. I'm giving it another month to see if it works - otherwise I'll give up on it after I've used up the 3 bottles I've got. I've added some magnesium each week for the cramps - I'm sure they are helping. I also take a fish oil tablet every second day and a multi vitamin when I remember. I have been told that acupuncture is very good for nerve damage to the feet - I will follow that up soon. Again I say that meditation is just wonderful - find one that suits you. Drinking Herb Geranium tea is supposed to be very good and does not "boost" the immune system. It's almost like ordinary tea so is very drinkable. Google it to find out more about it. Sanje has some wise words for us doesn't she! Thanks Sanje Regards Carol

jola57
01-25-2009, 08:47 PM
Sangye, thank you for clarifying to all how dangerous the belief in "no drugs, hollistic cure only" approach can be. Wegs is one disease that homeopathy not only will not help but can have grave consequences on. I take only calcium, b6,12(because I'm deficient), vit D, iron. The key is to listen to your body and blood test results. Our kidneys are at risk andy ANY extra vitamins or supplements have to be filtered out making the kidneys work over time, an action that they may not be able to perform for too long withut getting seriously damaged. Everyone around us gives advice thinking that because we have an autoimmune disease we need to boost it. I had this problem with my mom until I printed a Polish report on Wegs and let her read it. She now understands a bit better. My husband is an anesthetist, and I was a clinical immunology tech (changed career when had kids), but neither of us was prepared or knowlegeable about this disease. Thank goodness for this site and Andrew for starting it. What the doc don't know ( and they know so little) we get to find out here and to know that we are not alone and that others go thru the same symptoms and even worse. Stay positive and happy.

GC Lim
01-29-2009, 06:35 PM
thank you all for you reply and advice. Many friends and relatives have come up with suggestion on supplements to take when they heard of my condition..ranging from Ginseng to Lingzhi..quite overwhelming...but prob is they got these info from people suffering from cancer and other AI. Sangye's point about WG being different from other AI is a wake-up call for me...i am going to be very careful going forward when I research on supplements.

Twice
01-29-2009, 07:58 PM
I've learned to be patient, nod smilingly and give encouraging noises when people tell me about the miracle cures they have discovered. So often, as mentioned above, they go contrary to everything our bodies actually need. I tend to take them away, think about it and most often discard the advice.

However, I have found some holistic therapies, particularly physical and manipulative therapies work for me. I feel I have benefited from accupuncture, Alexander Technique and plain old massage in the past. I'm thinking very seriously about trying Vibrogym, which a couple of my clients with MS have recommended, as my muscle tone is awful and Vibrogym is low impact and low-aerobic (I'm anaemic).

jola57
02-01-2009, 01:13 AM
Funny thing about massages, on my recent cruise I went in for a massage and after learning that I was on chemo they refused to geve me one. I researched some and found that because of our granulomas in the blood vessels, when we get a deep massage it stimulates the vessels and has a negative effect on both the granulomas and the chemo we take ie everything moves to quickly. So although I looooove my massages, I now get them seldom and only light ones. Same goes for hot baths. Moderation is the key.
Accupuncture - had that done on the cruise as well - hmmm did not feel any benefits beyond pain and cramping in my nerve from one of the needles in my hand by the thumb that persisted for a while afterwards.
So before ANY alternative medicines or procedures DO read up about it and wegs, just to make sure it is not counterindicated.

Sangye
02-01-2009, 02:52 AM
Good massage therapist that refused to treat you being on chemo. Anything but the lightest massage stimulates circulation and lymph drainage, which can release dangerous amounts of chemo into circulation. Massage also creates inflammation, which a healthy body can handle. Depends on your current inflammation status if you can.

Regarding acupuncture-- Find someone who has trained in China for the real deal. My acupuncturist back in Arizona had trained with Chinese and Tibetan masters. I couldn't believe what he could tell from reading my pulses. He said "The masters can take your pulse and read your soul." Prior to seeing him, I'd had acupuncture for years with my naturopaths. When I told them what he was able to read from my pulses, they both said "Go to him."

andrew
02-01-2009, 09:38 AM
Good info re: massages. I never knew that could happen. Thanks!

I've never tried accupuncture but might give it a try one day :)

chrisTIn@
11-26-2010, 11:08 PM
Moderation is the key.



Usefull practical information on this thread.
I miss that in the contact with my doc.
I believe he 's a great scientist but he's too occupied to give me this kind of practical coaching.

Jaha
11-26-2010, 11:33 PM
All,

I am so thankful, to be connected to this site. There are so many things to learn from all of you. I am just beginning to put this all together and am more amazed by what I learn each and everytime, I come visit this site. Thanks again for all of you and God Bless!
Jana