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CT01
12-06-2016, 11:45 PM
Hi,

I have been reading previous threads on how changing certain lifestyle and food habits has been helpful for some of the members to maintain better health in general while suffering from Wegener's. After reading the 'Wegs & Ayurveda' thread by Sangye I believe that diet & lifestyle changes could bring some improvement, if not cure Wegener's.

My question is who could a Wegener's patient consult with regards to the diet changes. Is it a Chiropractor or a nutrician specialist? Please help me if you have any experience or information on this.

Secondly, has anyone used Chiropractic adjustment in order to bring relief to the neurological system. I found a very good Chiropractor closeby, he knows about Wegener's but he has not done Chiropractic adjustment for a Wegener's patient before. Do you have any suggestions for me from your own experience how to go about it. I am in two minds about trying it because I would not like my friend to get into worst situation with his disease.

thanks
CT01

MikeG-2012
12-07-2016, 02:27 AM
After reading the 'Wegs & Ayurveda' thread by Sangye I believe that diet & lifestyle changes could bring some improvement, if not cure Wegener's.

I'd be careful with the "cure" statement with this disease. I don't know of, nor have I heard of anyone that has been cured yet.


My question is who could a Wegener's patient consult with regards to the diet changes. Is it a Chiropractor or a nutrician specialist?

From my experience, chiropractors are not Nutritionists, nor are they wegs experts. I think the real answer lies in with his wegs specialists, and let them make recommendations to dietitians, nutritionists, etc. All the chiropractors I've known that are into nutrition, are more concerned with selling bottles of supplements, than teaching folks about healthy eating habits and lifestyles. I've stopped going to several chiropractic (vitamin sales offices) after being pushed to take their line of expensive supplements.


Secondly, has anyone used Chiropractic adjustment in order to bring relief to the neurological system. I found a very good Chiropractor closeby, he knows about Wegener's but he has not done Chiropractic adjustment for a Wegener's patient before. Do you have any suggestions for me from your own experience how to go about it. I am in two minds about trying it because I would not like my friend to get into worst situation with his disease.

I go to a chiropractor once in a while. She really helps me when my back is sore and needs adjustment. I don't go to her for wegs advise, nor would she want to give advise to me--even though she has done her due diligence and has done some extensive reading on GPA/Wegeners, to better understand my situation.

I think your friend may need time to react to his initial onset of this disease. Speaking from my own experience, this disease is complicated enough at the beginning. Maybe your efforts are appreciated, but when I had friends trying to help, it was more stimuli that I didn't need at the moment. It takes TIME to digest all the aspects of an initial diagnosis, and make the necessary drastic lifestyle changes that are needed. One more thing, from a helpful friend, just adds additional stress to an already stressful time.

I'm a truly a fixer personality, and there's not much to fix after an initial diagnosis. The initial fix is patience, education and learning to cope with the new normal that has been unwillingly thrust upon you.

Pete
12-07-2016, 02:42 AM
My experience with a chiropractic nutritionist is the same as Mike's. My best takeaway was to eat real food instead of highly processed food like substances. I eat no "diet" or "low fat" products. I try to eat good carbs, saturated fats, more fruits and vegetables, and less bread. I also exercise several times a week with my exercise target being 30-45 minutes 5x weekly. My weight is stable (about 10 lbs over pre-wegs weight), and I feel very well.

Alysia
12-07-2016, 05:22 AM
What Mike said...

CT01
12-08-2016, 04:54 AM
Thank you Mike, Pete and Alysia, your reply and help means lot more to me than I could say.

Mike, every word you wrote is true. There is no way to expedite the process of coming to terms with the disease itself or lifestyle changes that one might need to make. And I understand this completely :).

I had read Sangye's posts - 'Wegs & Ayurveda' and 'How to beat some of Pred's side effects' on how she made diet & lifestyle changes that helped her general well being. Sangye's post was very inspiring and I felt not all is lost. With proper guidance on food & lifestyle my friend could hope for better quality of life & ability to manage Wegs in good way. I spoke to a very experienced Chiropractor and but he could only do Chiropractic adjustment & not so much food guidance (other than supplements :-/)

Through this post I wanted to ask if anyone of you made lifestyle/food changes, who did you consult and how it helped you...was it your Wegs sepcialist who gave food consultation?

If there is some food adding fuel to fire in his case it is better he knows about it but I am not sure if medical doctors even acknowledge benefits of anti-inflammatory food. Sorry if I am asking silly question but I would like to only know who could my friend consult with food/lifestyle changes when he wants to start. He might not start changing things right away but being better informed would help him prepare and give a direction to uncertainty he is facing currently.

I will also encourage my friend to join this support group....this group is really big help to reinstate hope.

CT01

Pete
12-08-2016, 07:16 AM
Hello CT!

I did make a significant dietary change upon advice of a chiropractic nutritionist. He also had me on the supplements for awhile, but I didn't think they were doing me enough good to justify the expense, so I continued to eat healthier. I generally didn't like fish that much. Now, I order it when I'm out about once a week. I've also found some recipes that don't involve many ingredients that are simple and easy to cook. I don't eat low fat or "diet" foods. There are too many chemicals used as flavor enhancers that are bad for us. At home, a typical meal is 4-10 oz of protein (meat or fish), a baked sweet potato, and a tossed salad. We prefer to eat the darker greens such as spinach, chard, arugula, broccoli, etc. Peppers, carrots, beans, are also big parts of our diet. I use a fair amount of spices, but try to watch my salt intake. If I add salt when cooking, I don't add more at the table. I use extra virgin olive oil or canola oil to cook and with salads. I use real butter instead of margarine. I use plain whole milk yogurt. I eat more fruits and vegetables.

As far as exercise is concerned, I've generally led an active lifestyle except when the GPA was giving me a lot of trouble. I'm getting back into the routine after some oral surgery and a heavy cold. I try to get to the YMCA at least three times a week to swim, walk on the indoor track, or do resistance weight training. I live in a neighborhood where there are nice sidewalks, so I have mapped out a couple of loops ranging from 1 - 4 miles. I am now being careful when walking as I have a hip that starts to ache pretty badly after a mile or so (hence back into the pool). My fitness targets for the next few months are to be able to swim 1,500 yards non-stop in 30-40 minutes, resume the weight training, and continue walking. There is a thread on here (Any virtual workout buddies out there?) on which others have posted their fitness regimens.

I'll also pass along some of the best advice I've gotten - from one of the docs on the team that diagnosed me: Take your meds as directed and live your life as fully as possible. To which I add: Learn how your body speaks to you. The signs of a flare are often very subtle and can be confused with something else (aging in my case).

Hope your friend joins us. We're here to help.

vdub
12-10-2016, 03:05 PM
You also have to remember that most of Sangye's posts are 4 or 5 years old....