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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-11-2010, 08:14 AM | #1 | |||
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Hey all.
Just wondering what vitamins I should be on. Maybe that is causing my problems because I'm not taking any vitamins right now. I'm on pred and cellcept. Thanks for any help. |
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05-11-2010, 08:25 AM | #2 | |||
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Tyson I take a B complex every morning, 2,000 mg of Vit E and 1,800 mg of calcium with vit D. I know alot of other MGers take Manganese and sublingual B12. I never saw much improvement from the B12 but others swear by it. I have done alot of research and have found that large doses of Vit E naturally suppress the immune system. I was taking 400 mg daily but after reading that upped it and really do think it is making a difference. My pred dose is lower but my eye isn't drooping like it was before I increased vit E.
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"Thanks for this!" says: | DesertFlower (05-12-2010) |
05-11-2010, 09:33 AM | #3 | |||
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Wisest Elder Ever
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Many drugs deplete nutrients. Prednisone is one of the worst in this regard:
Here is a list of what to watch out for: http://www.chiro.org/nutrition/ABSTR...steroids.shtml IMO the potassium and magnesium depletions are signficant and serious. There are foods high in potassium, like V8 juice and cantaloupe. Magnesium is in almonds --270mg/3 ounces. --I'd use unsalted. I'd get the B12 and Vit D tested for. Your blood test should show 400 or above. (some doctors call 250 normal and that is antiquated information). I have a B12 thread here: http://neurotalk.psychcentral.com/thread85103.html Estimates are that about 1/2 of people in US are low in D. Here are two medical videos on D3 and how important it is: http://neurotalk.psychcentral.com/thread92116.html More information at grassrootshealth.net If gluten intolerance is the reason for your autoimmune issues, continuing to eat gluten will make you worse and worse. People with autoimmune disease should be tested for gluten issues: http://neurotalk.psychcentral.com/forum13.html I am always concerned when I see young males with this problem, as they are not in the common stats for onset which is 50 and over for males.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | DesertFlower (05-12-2010), Pat 110 (05-11-2010) |
05-11-2010, 12:57 PM | #4 | ||
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Mrs. D
Recently I have been feeling far more fatigued than usual and hoping it wasn't the MG, I asked my GP to test my vitamin D level. It came back at a level of 21. He called a prescription into the pharmacy for 10,000 units of Drisdol, generic for D2, to be taken once a week for 5 weeks. I take my 3rd one tonight. From the research I've done it appears D2 is not recommended, only D3. However, in this country we don't have prescription therapy D3. Do you think taking this will increase my levels so that I can then go on a maintenance dose of 2,000 units daily of D3? He's going to retest after I complete the 5 weeks. For several years I've taken Centrum Silver Utlra Womens which contain calcium & D in the morning and Caltrate 600 plus D in the evening so I was surprised the level was so low. Thank you, Pat Last edited by Pat 110; 05-11-2010 at 01:08 PM. Reason: forgot something |
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05-11-2010, 01:29 PM | #5 | ||
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50,000 units not 10,000.
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05-11-2010, 01:32 PM | #6 | |||
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Wisest Elder Ever
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We have several D threads now on the Vitamin forum.
D2 is rx only because historically it was the only one for many decades (no D3 otc). It also appears in doctor's therapeutic manuals still and that is why they write for it. The general rule of thumb is 1000IU of D3 for every 10ng you need to raise in the blood work. Your target amount should be 50-60ng/ml, as per the newest research. For 21ng/ml to 50ng you'd need at least 3000IU D3 daily. I am not so sure that large dose of D2 will work very well. You can hold off and get retested so you will have EVIDENCE of this. In the meantime, watch the videos, and read the grassrootshealth website. I was somewhat leary at first of all this new info, which I think the doctors are also very LEARY. But over the past 4 yrs I've gone from 1000IU D3 daily to 2000IU daily, 4000IU daily and now 5000IU daily. When I hit the 5000 mark my winter time blues (SAD) did not come this winter. So that is where I am staying. When I go out in the sun (if it ever appears here! Brrrrr) I stop taking it. On vacation I tend to be out all day. That is when I feel the best too! After end of Sept...I used to really start dragging! So now I am a believer too! Most of the people posting on all these forums are quite low when they get tested. I've seen some report levels in the single digits! D3 is the active natural form of Vit D.... it is OTC because there are no drug companies making it (getting a new drug application for it--because it is not patentable). The second video in that link I gave is from Australia and there the doctors use 4000IU D3 daily until blood levels come up. Then they use 1000IU D3 daily (which I think is not enough) for maintenance. It is very irksome that doctors will test for B12 and D and then do treatments that are inferior. What a waste is that? meh! The OTC products you mention are quite low in D. People think milk is a good source... nope. 100 IU of D2 per 8oz! Also I think the liquigel forms are better than dry tablets. When you decide to start D3 in earnest buy it in the liquigel form. NOW makes an affordable one. Quote:
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | DesertFlower (05-12-2010), Pat 110 (05-11-2010) |
05-11-2010, 01:51 PM | #7 | |||
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Thanks for starting this, Tyson!
I take omega 3 fatty acids, vitamin D3 (1000 units), 1500 mgs calcium, B complex (but not everyday, because it sometimes makes me flush), supplement especially for people with cataracts (antioxidants, vitamin A, E, C, etc.)... Mrs. D...Could I ask you something? I had my D levels tested some months ago, and it was 59, and the doc. said I was mildly deficient...I'm totally confused...From the looks of it, I'm not, but I don't know what unit of measurement he was using...What are the minimum levels for both units of measurement? Thanks for your help! |
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"Thanks for this!" says: | DesertFlower (05-12-2010) |
05-11-2010, 02:22 PM | #8 | |||
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Wisest Elder Ever
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Canada probably uses nmoles. But you'd have to double check that with your doctor's office.
This gives the conversion: http://www.unc.edu/~rowlett/units/sc...ical_data.html Quote:
59nmole divided by 2.496 = approx 24ng/ml. That would be low.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | Nicknerd (05-11-2010) |
05-11-2010, 02:25 PM | #9 | ||
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Thank you so much for all the very helpful info Mrs.D!
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"Thanks for this!" says: | mrsD (05-11-2010) |
05-11-2010, 02:57 PM | #10 | |||
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Thanks, MrsD!
P.S. I find NOW products to be really good...I was taking a supplement before called Indole 3 Carbinole, and I noticed a difference almost immediately. I was taking it for breast cysts... Thanks again! |
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"Thanks for this!" says: | mrsD (05-11-2010) |
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