November 5, 2014 at 5:36 am
I’m recovering from MFS. It’s been two years and the latest EMG still shows no activity in sensory nerves, although I have made quite some progress. I was hoping to get some info from members that have tried out any kind of alternative approach (meaning anything beside immunoglobulin treatment, physiotherapy and B complex). I’ve tried quite a few things, none of them had any big effect, but I don’t know how my recovery would go without them.
This is my list:
– Biotherapy (once a week for three months)
– Bioresonancetherapy (for over a year, dealing with Candida, bacteria, amalgam…)
– Acupuncture, including Chinese herbs (26 times)
– food changes: green juices (all the time), got tested for food intolerance (showed wheat, cow milk), tried paleo diet for a month (I really didn’t like it), taking B complex and Omega 3 daily
– Reflexotherapy of the feet (once a week for four months)
– magnetotherapy pillow (2-3 times a day for three months)
– Reconnection (three therapies)
– getting a dog 🙂
Please share your experience 🙂
November 5, 2014 at 7:44 pm
I too have MFS. You can find some of my posts about my condition here: https://forum.gbs-cidp.org/topic/post-miller-fisher
Some MFS sufferers have been helped by taking Alpha Lipoic Acid (ALA). This is a non-prescription dietary supplement that is available in the vitamin section of many stores. I use the following product and take 1200MG per day: http://www.supplementwarehouse.com/viewitem.asp?idproduct=162545
A clinical trial was completed last year in Oregon to exam how ALA treats CIDP. We are still waiting for the researchers to post their findings here: http://clinicaltrials.gov/ct2/show/NCT00962429?term=lipoic+acid&rank=13
November 15, 2014 at 2:15 pm
I’ve read your post just now. So you’ve had GBS/CIDP and MFS? A long way to go. I still haven’t give up hoping for improvement, although the doctors have given up.
Thank you for the info on ALA. Have been taking these http://www.iherb.com/Healthy-Origins-Alpha-Lipoic-Acid-100-mg-120-Capsules/8442#p=1&oos=1&disc=0&lc=en-US&w=healthy%20origins%20alpha&rc=2273&sr=null&ic=5 a while ago, but they didn’t do me good – I felt burning in my gullet and stomach after swwallowing the capsule. Maybe I’ll try again. And thank you for the link to Oregon’s clinical trial, will check it up time to time.
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