My doctor is clueless! How can I get the help I need?
Unfortunately, most physicians are simply not trained in diagnosing or treating ME/CFS or fibromyalgia. Some doctors may misdiagnose or tell you the problem is in your head, but I don’t expect fibromyalgia experts to know how to do heart bypass surgery and I don’t expect a standard physician to understand fibromyalgia. If you suspect you have fibromyalgia or ME/CFS, you need to go to somebody trained in the field.
The Fibromyalgia and Fatigue Centers (FFC, fibroandfatigue.com) nationally have effectively treated more than 20,000 using the SHINE Protocol. The doctors at the FFC specialize in these illnesses, and as their medical director, I have the honor of assisting in their ongoing training. Many holistic physicians are excellent at treating this illness, and thousands of practitioners can be found at holisticboard.org and naturopathic.org. Stop setting yourself up for frustration, and go to a practitioner familiar with how to get you well, now.
If you are unable to see a doctor right away, there is a “Fibromyalgia Specialist” online computer program I created to help evaluate your symptoms (and if you have them available even your lab tests) to determine the likely causes ofyour CFS and fibromyalgia. It will tailor a mix of natural and prescription therapies to your specific case. This way you can get started on your own with the natural therapies (almost the entire treatment can be done naturally), and discuss the few prescriptions you might need with your family physician. This program can be found at endfatigue.com.
Are there other helpful treatments as well?
Absolutely! New research into fibromyalgia is skyrocketing. Let’s look at some of the newest research, as well as the important area of treating food and other toxicities/ sensitivities. Very promising new research includes:
The Methylation protocol. It appears that a subset of people with ME/CFS and fibromyalgia have a biochemical defect in what is called the “Methylation cycle” which makes it very difficult to maintain energy production. This defect can be treated with a special nutritional protocol initially proposed by Amy Yasko for treating autism and developed further by two of my favorite ME/ CFS and fibromyalgia researchers—Rich Van Konynenburg, PhD, and Neil Nathan, MD.
Nathan discusses the Methylation protocol in Chapter 14 of his new book On Hope and Healing (Et Alia Press, 2010). He recommends the protocol be done under a holistic physician’s supervision as it may sometimes initially flare symptoms. The problem is that very few physicians are even familiar with it.
Nathan notes that “what is most important is that we have recently shown that the use of tiny doses of very specific combinations of vitamin B-12 and folic acid has resulted in significant improvement in patients with fibromyalgia and chronic fatigue.” He completed two studies with this protocl and found that 70 percent of his patients improved within three months, 20 percent reported they were “much better, occasionally to the point of feeling cured. In the second study of 30 patients, the average improvement was rated by our patients as 48 percent.”
Antivirals. Another exciting new research explores different viruses and using different antivirals in a subset of ME/CFS patients. Some of the most exciting, and controversial, research is exploring the presence of XMRV/MLV virus in ME/CFS and fibromyalgia. Studies are still ongoing, but keep your eyes peeled for more information in the coming year.
Diet. A subset of people with fibromyalgia have severe food and other sensitivities. When you treat the candida and low adrenal levels, I have found that food allergies often go away. In those where they persist, or in patients who can’t take anything,—even natural remedies— because they have severe sensitivities, a simple but powerful treatment holds great promise.
NAET. The Nambudripad Allergy Elimination Technique uses a mix of muscle testing and a special acupressure approach to eliminate sensitivities. I have found this so remarkable that our foundation designed and funded a study using NAET for autism, which was recently accepted for publication. In this study, 23 of the 30 children in the active treatment group were back in regular schools at the conclusion of one year of treatment as opposed to 0 of 30 in the untreated control group. We often see similarly dramatic results in fibromyalgia and ME/CFS patients with severe sensitivities. NAET was developed by Devi Nambudripad, MD, PhD, LAc. Although some patients are also sensitive to hormones, chemicals, and sometimes even spouses, Nambudripad focuses on treating the food sensitivities. She says “we focus on treating 10 key food allergens first. There are over 50 groups of foods that patients must be tested for however. Once sensitivities to these foods are cleared, the patient can eat them and usually feels much better.” More than 12,000 NAET practitioners worldwide can be found at naet.com.
Ribose. A special energy nutrient called ribose was shown in a recent study to increase energy an average of 61 percent after only three weeks. D-Ribose is an outstanding nutrient (a special sugar—even OK for those who need to avoid sugar). In addition to its role in making DNA and RNA, Ribose is the key building block for making energy. After an initial study in our research center showed an average 45 percent increase in energy in fibromyalgia patients who took ribose. A larger study was undertaken (and has been submitted for publication). In the study, 257 Patients with ME/CFS and fibromyalgia at 53 health practitioner offices were given 5 g of ribose three times per day for three weeks.
The effects were amazing:
- an average 61.3 percent had an increase in energy
- an average improvement in overall well being of 37 percent
- Sleep improved on average by 29.3 percent
- Mental clarity improved by an average of 30 percent
- Pain decreased by an average of 15.6 percent