Vitamins and supplements for CIDP

[Flossie]

I am sorry this is such a long post but this is a subject that is very important to me and I have spent a lot of time researching it. Since my personal program is undergoing constant tweaking, I would like to know what others are taking to recover from CIDP.

Although I still have CIDP I feel much stronger since I have been taking nutritional supplements. My neurologist has always said that time and rest were the most important requirements for my recovery from CIDP; but he is not medically opposed to it if I wanted to "waste" my money on supplements.

Here is my current list of supplements:

1. Multivitamin in capsule. Pressed once a day multi vitamins like Centrum use heat in their processing which can destroy most of the vitamin B potency. Also the compacting can make it harder for the body to break it down and chunks can be excreted undigested.

2. Calcium with vitamin D3 because I have osteoporosis from prednisone.

3. B complex just twice a week as insurance that I am covering all the bases.

4. Vitamin B 12 in the form of Methyl Cobalamin which comes in a tablet that dissolves under the tongue to be absorbed directly into the blood stream. B12 is crucial to healthy nerves and the methyl form is the one most easily used by the body. Also, these tablets taste good so it's no trouble to take one a day.

5. Fish Oil fatty acids (only omega 3) gelatin capsules twice a day. The Omega 3s are specific anti inflammatories. Studies have also shown the Omegs 3s are helpful in treating depression.

6. A commercial anti oxidant pill that contains cucurmin (yes, curry), green tea, grape skin and grape seed plus the usual vitamins A, C, and E as well as zinc and selenium. All of these nutrients have been shown to help nerve growth in MS patients.

7. Alpha Lipoic Acid (100 mg) . ALA is a "recharger" for Vitamins C and E. If you take ALA then the E and C can do their specific tasks without having to do the ALA work as well. In Europe diabetic nerve pain is treated with 600 mg of ALA a day.

8. Grape Seed Extract (100 mg). OPCs (oligomeric proanthocyanidins) have been shown to be even more powerful antioxidants than vitamin C.

9. Coenzyme Q10 (100 mg). CQ10 is important for cell energy and regeneration. It also helps with my bleeding gums.

10. MSM (sulphur) with Glucosamine (500 mg each). The MSM is for energy and pain, and the glucosamine is for joint health.

I think that there are several distinct forms of CIDP which require different treatment strategies. However, I do believe that whatever helps remyelination in any body is worth trying for myself. So I do a lot of reading on Multiple Sclerosis and HIV sites too.

I am looking forward to reading your opinions and your success stories regarding nutrition and CIDP. Thanks for reading this far,

Flossie

[Flossie]

You are responsible for your health. Do your research.

CIDP affects each patient differently. If you have a slow onset CIDP it is possible that your body is very depleted in the building blocks necessary to repair your myelin. I think some unorthodox experimentation with supplements might be necessary - to augment, not substitute the traditional approaches.

Always check with your neurologist before you play with herbal remedies. (Our own Doctor David does not think supplements and vitamins are a good idea.) Supplements - especially herbs - are not benign. Do your research for your own particular symptoms, avoid over dosing, avoid toxic prescription drug interactions and purchase only from a quality supplier. You are responsible for taking care of your health - but only you truly knows what it feels like inside there so do look into all possiblities.

Miracles don't happen in the first week of course - but I think you'll notice a difference within the first few weeks. (In addition, think "happy thoughts" about learning meditation type breathing exercises to get you through the tough moments.) You'll still have CIDP and need your prescriptions but hopefully you will feel stronger and have less pain.

I am a huge convert to using antioxidants to combat oxidative stress. That's a lot more than just vitamin C. ( Eat brocolli !!)There's a whole integrated system that repairs tissue. I am constantly tweaking my own supplement package to deal with my specific nerve damage.

For instance, I found a tremendous difference in pain level and sleep patterns when I added grape seed extract to the more publicized antioxidants. On the other hand, GSE did not do a thing for an email friend with CIDP. This is a highly individualized process. ( Another example is my friend with arthritis who noticed immediate symptom relief when she started taking MSM and ALA. However she can't tolerate the magic food brocolli.)

Take your clues from your own body and symptoms. These will change over time so be prepared to tweak your supplements. You cannot direct certain molecules do do certain tasks of course - but you can supply the necessary materials for your body to work with. The worst you will do is flush very expensive pee down the toilet.

Utilize a "licensed natural pharmacist" if you find one you like. He has the training to start your program (I don't believe in reinventing the wheel). Later as you do more reading you will feel confident to adjust and experiment on your own. Always remember that no single supplement is a magic bullet for anyone. (Do not go to a health food store. Ordinary pharmacists are not usually specially trained to help you either.) If you carefully read the literature that is available on the various prescriptions then you can avoid any possible "toxic" combinations with the vitamins.

If you are already eating a sensible healthy diet then I doubt you need to alter it drastically for your CIDP. You do need lots of protein. Do try to avoid the "whites" - sugar, salt , fat. Supplements are not substitutes for food; they are meant to provide the body with extra nutrients to address specific needs.

I do realize that it is a leap of faith to think that nutrients might be important like prescription drugs - but even medical schools are beginning to incorporate this idea.

Flossie

[Adrianne]

My family has had their share of health problems. After doing my research and testing for myself, I found the products by USANA Health Sciences to be the best. My granddaughter who was born with Down syndrome, had her thyroid removed due to Graves disease, and has alepecia (complete loss of hair) was recommended to take Proflavinol to boost her immune system. She is now getting her hair back and feels better than ever. Her great personality is back. She suffered terribly.
My husband has arthritis and takes Procosa II for joint health.
We all take the Vits and Mins, Omega, Calcium.

As a result I became a USANA Health Science distributor. Everything you mentioned is included in the #1 ranked nutritional supplement in North America (bio-availibility, effectiveness, and complete optimum dosage) These are pharmacuetical quality and meet a much more stringent code than what you buy in the food and health stores, which only have to meet food standards. They are also listed in your dr's PDR.
Please visit my website www.gentilegroup.usana.com. Ask your doctor. If he is into wellness and not just treating illness, he will know about USANA or will educate himself.

[Adrianne]

[QUOTE=Adrianne;16121]

My family has had their share of health problems. After doing my research and testing for myself, I found the products by USANA Health Sciences to be the best. My granddaughter who was born with Down syndrome, had her thyroid removed due to Graves disease, and has alepecia (complete loss of hair) was recommended to take Proflavinol to boost her immune system. She is now getting her hair back and feels better than ever. Her great personality is back. She suffered terribly.
My husband has arthritis and takes Procosa II for joint health.
We all take the Vits and Mins, Omega, Calcium.

As a result I became a USANA Health Science distributor. Everything you mentioned is included in the #1 ranked nutritional supplement in North America (bio-availibility, effectiveness, and complete optimum dosage) These are pharmacuetical quality and meet a much more stringent code than what you buy in the food and health stores, which only have to meet food standards. They are also listed in your dr's PDR.
Please visit my website www.gentilegroup.usana.com. Ask your doctor. If he is into wellness and not just treating illness, he will know about USANA or will educate himself

[Flossie]

I agree that USANA products are great. I took them for a while and have since changed my program to other brands that I researched carefully. (I purchase my pills online - I do not sell anything.)

But I do not want to make this thread about specific brand products since that comes perilously close to commercial advertising. Maybe you could take your web address off the message and ask people to contact you off line. You certainly don't want anyone to think you are profitting from their pain. Your profile indicates you are a very caring person.

I truly think we could help a lot of CIDP sufferers if we could get them to consider augmenting their healthy diets with quality supplements.

I'm glad you found something to help your familty,
Flossie

[blossom4th]

Flossie and Adrienne,
Both of you seem like caring people in that you would take the time to try to help people find a complete way to better their health.I happen to agree with you,but due to a tight budget(really!),I do not have the flexibility that some would have in deciding which companies to go with.Money is always a consideration.However,I always appreciate suggestions,such as the one you offered Flossie about the multivitamin being in capsule form so that it can be digested.And I will print out your list of supplements.I might mention that I get my omega-3 by taking flax oil capsules twice a day;when I took fish oil capsules,it caused me to burp and feel "fishy"! :p