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This topic contains 9 replies, has 0 voices, and was last updated by  Flossie 5 years, 3 months ago.

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  • #2779

    Flossie
    Member

    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

    #11248

    Flossie
    Member

    Thinking outside the box:

    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

    #12050

    norb
    Member

    Hi Flossie, I’ve read yor posts with great interest. Thanks for taking the time to explain it all. I am interested in supplements also but my problem is cost. I am on social security with a very small annuity. Many supplements are fairly expensive and out of reach for me. I was wondering what you would consider the absolute minimum.

    I am taking a multi-vitamin/mineral similar to Zentrum – a form you seem to be concerned about. In addition a high potency B 12 but not in the form you mentioned. I quit taking COQ10 bcause of cost.

    I think I eat a pretty healthy diet, low fat and sugar, lots of veggies, little meat (no red), not enough fruit etc.

    My CIDP is progressing slowly, now after 5 years it has finally reached my hands, weakness in knees. There is no pain. I move around with a walker but can walk short distances around the house without. IVIG so far has had minimal benefit, quit Prednisone trial a few weeks ago because it had terrible side effects. Instead back on IVIG. I do have diabetes II but it is minor and controlled with diet alone. I have coronary artery disease, heart bypass 8 year ago, seems to be holding up well. No bone problems.

    I know each case is different but I suspect that there might be some basic supplement beneficial to all of us. You talk about experimentation. What would you suggest to start with?

    Thanks

    #12080

    Flossie
    Member

    Hi Norbert,

    Supplements are indeed costly – but since you are careful to eat a healthy diet perhaps you don’t truly need them.

    Supplements are meant to fill in any gaps in “building blocks” for the body to repair itself. I take prednisone long term so I need to replace a lot of things that the medicine leeches from my body. From my own experience I know which pills make me feel better. There are other supplements I tried that did not seem to make any difference in my perception of my health.

    I do not know what specific nutritional toll your heart disease and /or diabetes takes on your body. That’s where your personal research should begin. Since you don’t eat red meat I hope you are careful to get enough protein. It sounds like your body is working hard to repair damage on a lot of fronts.

    I do think everyone needs to take a good quality multi vitamin every day. A heat pressed pill from a reputable company is much better than none at all. Your B pill replaces the potency lost in manufacturing.

    High dose ALA is used in europe to safely treat diabetic pain so perhaps that could be on your short list as well. Even though your diet is high in antioxidants from veggies, pills supply more of any nutrient than you could ingest normally through food. Sufficient ALA (100 mg a day) will allow all the antioxidants you eat to be used most efficiently.

    I personally find the MSM and the fish oil pills to be important for pain and strength.

    CQ 10 is used by every cell for maximum efficiency and often recommended to heart patients. I think it helps with my CIDP weakness – but I too have considered dropping it from my program because of cost.

    Good quality supplements from reputable suppliers are available at places like Costco. (That’s where Consumer’s Report magazine found the best Omega 3 fish oil pills.) Walmart carries supplements – although you need to be careful to read the labels; some of them are less expensive because they are less potent. Do your research about manufacturing companies on the net so you can buy with confidence at discount prices.

    Naturally with your diabetes and heart troubles you need to be very careful about playing with your body at the cellular level.

    Keep eating healthy!

    Flossie

    #12453

    Dick S
    Member

    Flossie,

    Thanks for posting your list and thoughts. There is more to treating CIDP than just pills. You have really worked hard, experimented, and found what works for you.

    I love to drink tea, and have found that adding my little mixture of mint, peppermint, and spearmint (which I grow and dry myself) makes a really relaxing enjoyable start to my day. With the mints, I have also started herb gardening, which is a stimulating hobbyh, at least for me anyway.

    You need to be comfortable with where you are in life, and positive about your attitude. The body, mind, and soul need to be on the same page however you get it done.

    Thanks again for exposing some alternatives to everyone.

    Dick S

    #83268

    pjthomasset
    Member

    I was googling for Berocca vitamins info on the web, and I found this on the wikipedia
    “vitamin B if taken regularly can cause nerve damage”
    I was happy, as Berroca is cheaper than Natural Life or Qualivitz vitamins,
    and it has more B complex.
    But now……??

    [url]http://en.wikipedia.org/wiki/Berocca[/url]

    #83287

    LindaH
    Member

    Hi Flossie! I take B-12 and the Sublingual Tablets due to A Pernious Anemia and have to take weekly shots. B-6 I had a toxicity too at one time so I stay away from that. I take One A Day Multi Vitamins and Vitamin D. I have systemic lupus with other problems including CIDP. What would you recommend for someone like me. I get bad joint pain and infections, nerve pain like a diabetic would get. Besides what I am taking what would you reccomend! Thanks
    Linda H

    #83328

    Lovescats
    Member

    I can not tolerate ALA. I get terrible hearburn from it. I have tried other brands and they all give me heartburn. What would be something in place of it or close to it. I have CIDP and I am taking a multi-vitamin, omega 3, Caltrate. Is it possible for the nerves to regenerate at all? I thought once a nerve was damaged or it died that it would not be able to be regenerated. Have most people with CIDP been given an MRI of their spinal area to make sure it was not something else? My doctor mentioned just recently(after 4 years) of me getting an MRI of the spine, he did do an MRI on my head to make sure it was not MS. He also took a spinal tap and the protein level was high. I believe in supplements, but always being careful of what you take and informing your doctor of what you take. Just because it is from nature does not mean it is safe.
    Clare in Michigan

    #83332

    LindaH
    Member

    Hi Claire! Nerves can regenerate but it takes a long time for them to heal. So many centimeters a month. But with certain diseases nerves can cause inflamation and once given medications like prednisone those nerves can start refiing again around the dead nerve and sometimes they can grow new nerves around the Mylen Sheath. Different diseases can cause different reactions to the nerves. Just depends on what you have going on with you. Somebody with B12 can get nerve damage and if caught in time that nerve damage can heal up and the person starts getting better with the B-12 injections. Just like GBS the attack can be mild or severe. Severe attacks sometimes leaves that person with nerve damage the rest of their lives with some improvements but not 100 percent back to normal. And then some get completely normal again! Just depends on the person and how severe they got! Some had severe cases and later in they were just like normal again with no problems! So each person can be different. Hope this helped some and I wish you my best on the MRI report! Good luck!
    Linda H

    #83343

    Jersey Mike
    Member

    [SIZE="4"]I take a bunch!
    I take a complex vit.B twice a day.
    Vit. C twice a day.
    Prednizon
    Lion’s Mane. Its a mushroom derivitive that promotes Nerve Growth.
    A supplement called Mylen Sheath Support. My Mom found them at a health/vit. joint. Its full of minerals like copper, magnesium,etc.
    I also take a Centruim.
    1000 units of Vit. D.twice a day. Its bad enough I have to get a new hip in Dec., I don’t need any other problems.
    Plus other meds for my stomach & blood thinners.
    [/SIZE]

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