Tuesday, July 21, 2009


Various tasks will automatically fall upon the Patient Advocate's shoulders. Foremost among these will be learning about supplements. This entails spending large amounts of time in health food stores or stores such as Vitamin Shoppe, GNA and Inhealth. The PA learns these stores like the back of his hand and, in time, the PA will feel qualified to work in such a store. The PA will learn all the ins and outs of various supplements and various brand names. The PA will come to recognize the better brand names - Solgar or Thorne, or Douglas Labs. It is a competitive field and some products are better than others. Much of this work is hands-on -taking items off the shelf and reading the labels carefully. In this way the PA learns about the various makers of supplements and their reputations.

For instance, there was a time when the PA would frequent the health food store on 6th Avenue and 8th Sts, NYC, or the Vitamin Shoppe on West 4th St, the Vitamin Shoppe or Arrowroot in Bryn Mawr, PA, Whole Foods in St. Paul or the Wedge in Minneapolis. After a few years, the PA mastered this field and does not have to frequent these stores quite as often. But there are other places that he can go and other things that he can learn.

This work in health food stores will be repeated on the internet. Much needs to be read about supplements, their effects and their dosage. Shopping for the best prices is important, as are setting up accounts for reordering. Certain items, correcting a deficiency, might be regularly supplemented for some time. An example might be carnitine, which can be supplemented either by a prescription drug or by an OTC product. Carnitine levels can be measured in the blood and often CFS patients are low in carnitine. B12, magnesium, iron, ferritin and many things can be tested for blood levels. Supplements can correct deficiencies. Whether they bring betterment is another matter and is a case by case situation.

Certain products must be ordered on the internet. For instance if you are looking for probiotics, you might want to order VSL #3 from the internet. VSL #3 is seen as a broad spectrum powerful probiotic, recommended by Dr. Kenny de Meirleir. Others might suggest Culturelle, or Align or Mutaflor, available from Germany. Each has a slightly different twist and usage. Research on the internet together with diagnostic stool testing can narrow in on the product or products that might be most useful.

Another internet item is transfer factor, ordered directly from several sites and sometimes shipped overnight. Transfer factors are advocated by Dr. Joseph Brewer and others and help regulate the immune system. In the case of transfer factor, there is little specific testing that will validates its usefulness. A doctor usually gives guidance on the use of transfer factors.

Certain supplements are generally recommended for CFS patients. These can include b12, magnesium, carnitine, and iron and many other items. Decisions on what supplements to use on a particular basis will be decided by the patient and her doctor.

In the process of discovery, the PA will learn about Isoprinosine, X-cell anti-aging live cell, magnesium injections, transfer factors, glutathione depletion/methylation supplements, low dose naltrexone, certain “energetics” to support the mitochondria, and a host of other items. Gaining knowledge of these supplements takes a great deal of research and working with a sympathetic doctor. Use of supplements is heavily individualized and the benefits are determined often through trial and error. There is no clear roadmap.

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