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Living with Polyneuropathy CIDP, GBS, & CMT

Nutritional supplements


#1

Has anyone had success or experience treating their GBS symptoms with nutritional supplements? Since being diagnosed in early July 2014 and 5 IVIG treatment I've been getting progressively better. However, I am developing tremors in my hands that I need to get rid of. I've been doing some research and see that myelin sheath can be bolstered by copper, B12, Alpha Lipoic Acid, choline. I am experimenting. My doctor plans to test my nerves in February and said I may need more transfusions, I hope he's wrong about that.


#2

Lily, if you are experimenting, please keep your doctor in the loop, as supplements can have some surprising effects and may be contraindicated with certain medications.

(And just as a reminder for our members who would like to respond to this discussion, it is fine to say "this kind of supplement worked for me," but not "you should take this kind of supplement." One is sharing personal experience, and the other is offering medical advice.)


#3

Lily, whilst I echo what dancermom says about keeping your doctor in the loop, I was undiagnosed by the medical field for so long that I did venture down the path of self help and research as you have done.

Taking a b12 (nerve support) and magnesium (muscle support) vitamin daily helped me tremendously. They were the only supplements I took, though there is a thread on here regarding vitamins where many other supplements are mentioned that helped people. When I finally talked to my neurologist, she also mentioned that I might find fish oil beneficial.

I would take them at night (as I figured whilst I slept was the best time for my body to recover, so give it the support boost then. They didn't make the pain go away, but when I missed a day's dose I sure felt it the next day.


#4

Thanks for the reply Noja! I'm not currently taking any meds and don't need to worry about any interaction in that sense. When I mentioned the Alpha Lipoic Acid to my Neurologist he just raised his eyebrow, like he was entertained, and replied that he thought my body could heal itself. When I ran out of it, I let it slide and the shaking began. Not sure if there's a connection, but I'm taking it again along with a list of others. I take them throughout the day, I find the B vitamins to be stimulating and wouldn't be able to fall asleep if I took it at night! Dancermom makes a good point and I don't want to give anyone an impression of bad-science on this sight. I'm grateful for the advances of western medicine and fortunate for the treatments I've received as a result. I think my myelin is healing, I've been feeling vibrations in my body almost like a vibrating cell phone!


#5

go for it,it cant hurt and i believe in natural therapy


#6

We have tried krill oil and it help to improve symptoms of CIDP like more balance, reduce hand shake when holding smt and having more straighten fingers . We also use cumin black seed oil to apply on skin and oral take 500mg in sofgel capsule, around one month all the rashes and red skin nodes ( were tell cause by prednisone and cellcept) disappear. I will keep update on the progress