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Living with Polyneuropathy CIDP, GBS, & CMT

Do vitamins help


#61

Hi Kimberly, I too have taken supplements for decades. Once I was diagnosed and treated for GBS this past July, I began researching nutritional supplements to promote myelin sheath repair. I came up with a similar list to yours.

Kimberly said:

I have been taking supplements throughout my recovery. I have been taking liquid vitamin d, b-12, multivitamin, omega 3, n-acetyl-l-carnitine and lipoic acid. I had quite severe numbness/pins and needles in my feet. I was diagnosed in April 2014, and though my feet aren't completely normal yet, they are not painful at all and I think it will be just a month or two more before they are back to normal. I started weening myself off of gabapentin when I returned home, and while I found the three days after a decrease very uncomfortable, my feet ended up feeling better after each decrease. I can't say for sure that the vitamins make a difference because I don't know what would have happened if I hadn't taken them, but I'm four months since my hospitalization and feeling very good. I think the most important ones for nerves are vitamin d, b-12 and omega 3. I take the vitamin d and omega 3 in liquid form as the dosage I take is much higher than a single pill.


#62

Small amounts of Vitamins are not strong enough to alter the powerful progressive neurological Immune system breakdown. Most "Medical" treatments are trial and error. Most, GBS symptoms are the result of side effects from "Medical" vaccine and pain killer injection, trial and error.

Vitamins are not under your physicians AMA cover so they can not share these "Nutritional" Alternatives with us. A good place to begin, to receive the best of both is Intergrative Medicine, "Medical & Alternative" seek out a doctor with a Medical degree and Naturopathic degree. Your Naturopathic Physician can suggest the right amount of Vitamin supplementation for you.These Vitamins are strategically directed to nourish away sharp tingly GBS sensations by using rehabilitaion, One of the best for this is holding a 15lb then 35lb, then 50lb Kettle Bell for 5- 15mins.

My Naturopathic MD, worked what was best for me. My own plasma stem cells+ all these Very high therapuetic amounts High C, Balanced B, Regular Niacin, Sun Flower Lecithin, Natural E, Magnesium Sulfate & Chloride, Most beneficial, a cocktail of various oils 2tblspns each Krill, Coconut, Flax, Hemp,Fermented Cod/Butter oils. Soaking in Food grade Diatomaceous Earth with Bentonite Clay every other day. Oh and yes, 1/2-1 teaspoon saturated Himalayan Salt water called SOLE do the research. Don't do anything until you do your own research and find a Naturalpath MD.

This should be enough to get started.

Hope this helps!


#63

Thank you so much for this detailed message about great supplements, you have a wonderful naturopath. thank you so much for sharing!


#64

yes, thanks for sharing this information.

Shekinahglo said:

Small amounts of Vitamins are not strong enough to alter the powerful progressive neurological Immune system breakdown. Most "Medical" treatments are trial and error. Most, GBS symptoms are the result of side effects from "Medical" vaccine and pain killer injection, trial and error.

Vitamins are not under your physicians AMA cover so they can not share these "Nutritional" Alternatives with us. A good place to begin, to receive the best of both is Intergrative Medicine, "Medical & Alternative" seek out a doctor with a Medical degree and Naturopathic degree. Your Naturopathic Physician can suggest the right amount of Vitamin supplementation for you.These Vitamins are strategically directed to nourish away sharp tingly GBS sensations by using rehabilitaion, One of the best for this is holding a 15lb then 35lb, then 50lb Kettle Bell for 5- 15mins.

My Naturopathic MD, worked what was best for me. My own plasma stem cells+ all these Very high therapuetic amounts High C, Balanced B, Regular Niacin, Sun Flower Lecithin, Natural E, Magnesium Sulfate & Chloride, Most beneficial, a cocktail of various oils 2tblspns each Krill, Coconut, Flax, Hemp,Fermented Cod/Butter oils. Soaking in Food grade Diatomaceous Earth with Bentonite Clay every other day. Oh and yes, 1/2-1 teaspoon saturated Himalayan Salt water called SOLE do the research. Don't do anything until you do your own research and find a Naturalpath MD.

This should be enough to get started.

Hope this helps!


#65

Along with my Vitamin supplementation, Hot Water Aquatic therapy was very soothing and healing to the nerves. I had to be sure to avoid a chlorinated aquatic environment.Vitamins alone do not work quickly. From the beginning of this crisis I purposed to fight through the heaviness of the paralysis and stay in motion in some way. With the help of my family, even sitting up for short then increased periods, sent a positive message to my brain and nervous system. Though heart and lungs threatened to breakdown to the point of having to be incubated thankfully this was avoided.

Hope this gives more insight for your healing journey!


#66

Gayleen you're welcome. Continue to stay encouraged each day gets better!


#67

Hi,

I've been taking B complex from day one (this is really good: http://www.aor.ca/products-page/advanced/advanced-b-complex/) and omega 3 (cod liver oil...). I can't tell if it helped. I'm still in recovery after 2 years. Don't know how it would bw without it. I've also bought a strong juicer for green juices (not smoothies!), I think it's a good thing for anybody, even if you are healthy, you get yor vitamins and minerals in original form so your body can use it well.

Someone said that ALA supposed to help. There's been a study, but not published yet:http://clinicaltrials.gov/ct2/show/NCT00962429?term=lipoic+acid&rank=13


#68

Thank you so much for the great vitamin info and for the links to them, very helpful. Wishing you wellness ahead!


#69

Interesting article, thanks! I've been taking Alpha Lipoic acid and believe it helps. I also take CoQ10, multi-vitamin, High B Complex, D, Evening Primorose. Wish I could take Lecithin, but it goes right through me.

Rainbow said:

Hi,

I've been taking B complex from day one (this is really good: http://www.aor.ca/products-page/advanced/advanced-b-complex/) and omega 3 (cod liver oil...). I can't tell if it helped. I'm still in recovery after 2 years. Don't know how it would bw without it. I've also bought a strong juicer for green juices (not smoothies!), I think it's a good thing for anybody, even if you are healthy, you get yor vitamins and minerals in original form so your body can use it well.

Someone said that ALA supposed to help. There's been a study, but not published yet:http://clinicaltrials.gov/ct2/show/NCT00962429?term=lipoic+acid&...


#70

I only had my symptoms for about 1 month and I have been taking vitamins, especially all the B vitamins and fish oil. I can't really say if it helps, but with vitamins I believe one important thing is that your body is able to absorb them properly, you get the right vitamins/combinations. I would research it thoroughly and check with someone who is knowledgeable. There is so much conflicting information about vitamins nowadays. A lot of medical literature says we don't need supplements as we get enough from the right foods. On the other hand, in a condition like GBS we don't know if we have a deficiency. Generally, I think is good to avoid things that can be potentially bad for the nerves like sugar, coffee (I found it makes my symptoms worse) and to have a generally good diet. I'm seeing an acupuncturist now and will see what he suggests.


#71

Thank you for your input, my findings are the same and continuing to take vitamins and omega 3/b’s and like your idea about getting rid of sugar & caffine. ️Wishing you a good recovery and appreciate the feedback. Enjoy the day/ week ahead.



PT said:

I only had my symptoms for about 1 month and I have been taking vitamins, especially all the B vitamins and fish oil. I can’t really say if it helps, but with vitamins I believe one important thing is that your body is able to absorb them properly, you get the right vitamins/combinations. I would research it thoroughly and check with someone who is knowledgeable. There is so much conflicting information about vitamins nowadays. A lot of medical literature says we don’t need supplements as we get enough from the right foods. On the other hand, in a condition like GBS we don’t know if we have a deficiency. Generally, I think is good to avoid things that can be potentially bad for the nerves like sugar, coffee (I found it makes my symptoms worse) and to have a generally good diet. I’m seeing an acupuncturist now and will see what he suggests.


#72

This is what I feel like my treatment has consisted of. A wait and see approach. Maybe it's because my condition is more of a "mild" form and they feel other treatments are too "risky". Hope they are right about this and I don't end up with even more damage than treatment could offer me. It sure is tough! It depends a lot on the experience of providers in your area because GBS is so rare. I just started a regimen of supplements to boost my immune system and repair Myelin. Hoping for peace within my body whether due to supplements, mind or medicine.

LanceB said:

Just to add, 30 years ago they didn't have the treatments that we have now. The IVIG and plasmapheresis treatments they have now seem to be fairly effective in most cases in arresting the progression of the disease. Unfortunately, I think, in most cases in previous decades the patients were just kept comfortable and relatively pain-free. And there were a lot of permanently damaged people. (Including the doctor who was in charge of the Physical Therapy department where I was recuperating. He had contracted GBS as a resident at the end of his medical training, and 25 years later is was (is) still in a wheelchair. I think those cases are relatively rare these days.) (On the plus side, he married his physical therapist!)


#73

With numbness and tingling I have found that essential oils help. This has been through my trial and error. The website is campwander.com
She has a recipe on there called nerve block and a tiny bit of it works great, lasts about 12 hours or so. You can buy it from her but she also gives the recipe on there. I hope it helps.