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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Sunday, January 5, 2014

A Practical Suggestion For Vitamin Deficiencies

Each time any of us takes a vitamin pill or eats a mouthful of Corned Flakes, we're shown on the label what vitamins and nutrients are to be found in either the vitamin or the food.  Commercials on TV taut the benefits of products such as breakfast cereal or nutritional shakes by proclaiming that they have a 100%, or more, of the "Recommended Daily Allowance" (RDA) of vitamins and minerals that we all need.

However, how many of us understand the significance of the RDA's?   It's important to note that these recommendations were originally made by the federal government many decades ago.  They represent the minimum requirement for healthy people so that they don't get sick.  One needs to understand and/or remember that it was not that long ago that children had rickets from Vitamin D deficiency (an example) and that adults got goiters from a deficiency of iodine in the diet.  What does that have to do with ME/CFS/CFIDS and fibromyalgia?

It's quite obvious that people suffering from these "maladies" (ME/CFS and fibro) can be very sick, so much so that they can't work outside the home, do house work, or be involved in many family affairs, such as raising children. Clearly, these patients are not healthy and therefore the RDA's do not apply to them.  They have to heal and try to recover from the ravages of these conditions and likely need more nutrients than are suggested by the RDA's.  In an ideal world such patients would get their blood tested to see if they have vitamin  and/or nutritional deficiencies, as I addressed not too long ago in the post talking about Vitamin B-12 levels.

However, there are many potential vitamins that need to be assayed and the cost of doing so is prohibitive for all too many people.  Furthermore, it's becoming more difficult to find reputable laboratories which will test for Vitamin B-1 (thiamine), B-2 (riboflavin), B-5 (pantothenic acid),B-6 (pyridoxine), biotin, Vitamins A, C, K, and many, many others. (Vitamin D is an exception because it's so "in" these days!)

In talking to my rheumatologist, he gave me a relatively easy formula to follow.  He finds, in his mostly fibromyalgia practice, that giving his most challenging patients high doses of vitamins daily helps in their management.  Taking a readily available multi-vitamin THREE time a day, not once a day, is usually very beneficial.  His reasoning?  His patients are ill and require far more nutrients than their healthy counterparts. One multi-vitamin pill is probably sufficient for healthy people to prevent them from becoming ill.

Two multi-vitamins a day, however, are for those who are "under the weather," or only mildly affected by these conditions.  Three multi-vitamins a day are for those severely afflicted.

He warned me that over-the-counter vitamin pills contain a  mixture of fat-soluble vitamins such as A, E, D and K, which can accumulate in the body and become toxic if the levels get too high.  For such patients, he recommends a vitamin preparation containing all the B vitamins and Vitamin C, which are water-soluble vitamins, and do not accumulate, but rather are flushed out of the system if levels get a bit too high.  He assured me that this strategy can be quite helpful since correcting nutritional deficiencies helps the patient respond to the other treatments prescribed.

Of course, all the "normal" disclaimers apply.  One should always check with one's doctor!  Furthermore, this is a very basic approach to health but having said that, no treatment - no matter how sophisticated!- will work as intended if the patient is deficient in one or more vitamins.  Food for thought: pun intended!

As always, I hope everyone's doing their very best - only better!  Ciao and paka.

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  1. Since ME has metabolic abnormalities, I'm always afraid things will accumulate and build up in my system (like the lactic acid in my muscles), so I fear mega doses of vitamins. But, I know that I NEED nutrients! I have low potassium, vitamin D and sodium. I have to take 50,000 iu's of vitamin D once a week, and my levels are still low. My body will not take it up. Do you know if someone like myself would get anything out of vitamins and/or supplements? I worry about this and can't figure it out. Because of the metabolic dysfunctions.

    1. Oh wow, Maschelle. That's one I wouldn't even venture to say anything about. We're just all so different.

      I, or "we," treat everything symptomatically and I just get all levels checked, experiment with the help of my GP and rheumy and see where I go with the blood work.

      Wow. You really do need a good rheumy or at least a good internist. Really, please get those imbalances looked into: those are some pretty serious conditions that need guidance.

      Pro-Health has great info. However, it sounds like you need someone who really checks you out and gets to the bottom of why this is happening. xx

  2. I have CFS since 2000 and need to take 6000 IU of Vitamin D a day to keep my levels up. I had successive blood tests to be able to see what is needed. Those that live in Canada and Northern US are at a latitude where we can't make enough Vitamin D, no matter how much time we spend in the sun (recent research). I just had my genetic testing done by 23andme, and it turns out I have the gene (CYP24A1) that means I have a metabolic problem absorbing D. There are some who feel much less fatigued and get a better sleep when supplementing with Vitamin D. I don't notice a difference, but I take it as Vitamin D has other roles like bone health and anti-cancer.

    Thanks for writing a positive blog, there is so much negativity in the forums and blogs when it comes to CFS. I came here looking for those who have tried DHEA. I gain a lot of insight from online vitamin info from Dr. Teteilbaum, Dr. Myhill and the research 1st site. I have been able to improve some of my symptoms (less pain flares) by avoiding certain foods deemed excitotoxins and unbound glutamates (clinical research discoveries on both as they excite the nerves).
    Laura from Vancouver

  3. You Can Trace Every Sickness, Every Disease, and Every Ailment to a Mineral and Vitamin Deficiency"