People suffering from chronic fatigue and fibromyalgia syndromes discover the limitations of mainstream medicine in diagnosing and treating their conditions and often turn to alternative or naturopathic medicine for help. In general holistic medical physicians and naturopathic physicians are much better educated about CFS and FMS than mainstream physicians and they treat these conditions seriously rather than dismissing them as psychosomatic. They are generally good listeners and more empathetic than their counterparts.
I remember the first time I saw a naturopathic physician. I had been sick with chronic fatigue for fifteen years but had not talked to a physician about my condition in ten years. It was my first experience talking to a doctor about my health and not feeling judged or invalidated. This was in 1986 and my naturopath diagnosed me with Chronic Epstien Barr Virus - one of the early names for CFS. Up until that point I did not know of the existence of others who suffered from my particular condition and this knowledge in itself coupled by the caring nature of my naturopath was a positive development. But the naturopathic treatments prescribed to me which included immune enhancing herbs such as echinacea and nutritional support in the form of vitamin and mineral supplements made absolutely no impact on my health.
Since that time I have spent most of my health search in the alternative medical camp, trying one treatment after another many of which I have summarized in my post "What Didn't Work" fibrofriends.typepad.com/fibro_friends/2009/07/what-didnt-work.html. If nothing else pursuing these therapies gave me hope. Not trying something was for me equivalent to giving up. Every so often I checked in with the mainstream medical folks to see if they had anything to offer but they remained clueless as ever. The naturopathic folks and the mavericks on the the edge of medicine had the most chance of helping because they paid attention to the clues. I live in the Seattle area which is a hot spot for natural medicine and consulted some of the most well known practitioners in the field including Jonathan Wright MD, Dietrich Klinghardt MD, Ralph Golan MD, many graduates of Bastyr University and practitioners of Chinese medicine and acupuncture. In the end the things that made an impact on my health were not those prescribed by these practitioners but things I discovered on my own.
Naturopathic medicine in general treats the symptoms and secondary causes of CFS and FMS with natural remedies like nutritional supplements and herbs as opposed to pharmaceutical drugs. In the absence of understanding the systemic or primary causes of these conditions this may be the best approach and can result in an improved quality of life for patients or may be all that is required for a full recovery. Since CFS and FMS present multiple symptoms and dysfunctions, alternative practitioners focus on one or two areas which they have experience treating or they believe to be a main culprit of the disorder. Examples of these are adrenal fatigue, candida overgrowth, heavy metal toxicity, intestinal parasites, food allergies, nutritional deficiencies etc. I was treated for all these conditions and spent thousands of dollars in the process with very little improvement in my health to show for it. However my understanding of my condition increased with each of these "adventures" and in the long run helped me sleuth my way to the treatments that provided real recovery.
A good summary of alternative therapies for CFS is summarized by Rich van Konynenburg at http://www.cfs-healing.info/treatment-protocols.htm. Among the prominent doctors who developed these protocol are Dr. Majid Ali, Dr. Sarah Myhill and Dr. Joseph Teitelbaum, MD, author of the book "From Fatigued to Fantastic" and medical director of the Fibromyaliga and Fatigue Centers (www.fibroandfatigue.com). Dr. Teitelbaum's approach and that of the Fibro and Fatigue Centers is basically a combined one that addresses the individual symptoms or dysfunctions of the disorder with various therapies that originated in holistic or naturopathic medicine. He calls his approach the SHINE protocol, SHINE being the acronym for Sleep, Hormonal Dysfunction, Immune Dysfunction and Infections, Nutritional Deficiencies and Exercise. I think that Dr. Teitelbaum is a true champion for the cause of CFS and FMS and is passionate about helping those with the condition. I am sure that this approach has been helpful for many patients however in my experience and in that of many others I know, this protocol was not adequate in facilitating significant improvement in our conditions.
Dr. Teitelbaum and other researchers think that restoring disordered sleep (the "S" in SHINE) is paramount in the treatment of CFS and FMS. They prescribe sleep aids starting with natural remedies (sedative herbs, melatonin, 5-HTP) and if these do not work prescribe pharmaceuticals (Ambien, Neurontin, Klonopin, Trazodone). Here's the problem. Many people with CFS and FMS do not get results with natural sleep remedies and build a tolerance to or cannot tolerate the side effects of pharmaceutical sleep aids. In addition many people experience a rebound in insomnia when they go off sleep aids. To learn about my personal journey down this slippery slope read my post "Waiting For Sleep" fibrofriends.typepad.com/fibro_friends/2009/10/waitin.html.
Recently I discovered a treatment for insomnia using nanotechnology homeopathic patches placed on acupressure points at night that stimulate the production of melatonin and serotonin. The patches are non-transdermal, are non-addictive and have no side effects even for highly sensitive individuals. Some individuals with CFS and FMS have reported good results although they were not helpful for me. They are produced by a company called Lifewave www.lifewave.com.
Naturopathic and holistic physicians are aware of the hormonal dysfunctions in CFS and FMS resulting from the enormous stress these conditions place on the endocrine system and what is referred to as the hypothalamus-adrenal-pituitary axis. I was diagnosed with adrenal exhaustion and low cortisol levels in 1991 by Dr. Jonathan Wright and started taking hydrocortisol and DHEA at that time. Basically I felt a little better on these hormones but eventually they became less effective. I was subsequently diagnosed with adrenal fatigue by nearly every alternative health practitioner I saw after that and tried numerous other protocols including herbs and acupuncture with limited success. I think CFS and FMS patients can get some relief from taking hydrocortisol for short periods of time (6 months) and I have definitely benefited from this (To learn about my experience read my post "Adrenal Exhaustion" fibrofriends.typepad.com/fibro_friends/2008/10/adrenal-fatigue.html) however in treating adrenal exhaustion, one is only treating a symptom. The question remains what is causing the fatigue?
I experienced a more dramatic improvement in my fatigue by addressing thyroid function with the Wilson's Syndrome protocol. This came after an exhaustive three year search into thyroid issues which you can read about in my post "Thyroid Function" fibrofriends.typepad.com/fibro_friends/2009/03/thyroid-function.html. Dr. Denis Wilson developed a breakthrough treatment for reversing the effects of a condition which was first named "Wilson's Thyroid Syndrome" and is now called "Wilson's Low Body Temperature Syndrome". Wilson observed that after periods of stress and trauma many individuals developed symptoms of hypothyroidism - fatigue, low body temperature (below 98 degrees) and constipation even though their thyroid blood tests were within the normal ranges. The symptoms of this syndrome do not improve or get worse from taking T4, the storage form of thyroid replacement, however they improve by taking T3, the active form of thyroid replacement. Wilson developed a protocol of taking T3 compounded by a pharmacy with a slow release agent in increasingly larger doses until one's body temperature rises above 98 degrees and then slowly cycling off the hormone until the body is able to maintain a normal temperature. In this way a slow metabolism that results from a stress mechanism designed by the body to conserve energy is permanently reversed. I think that many people with CFS and FMS have Wilson's Low Body Temperature Syndrome and can benefit from this therapy. Fortunately many naturopathic physicians and holistic medical doctors are trained in this protocol however others including doctors at the Fibro and Fatigue Centers continue to treat their patients condition with a combination of T4 and T3 or Amour. To learn more about Wilson's Syndrome and to find a physician trained to treat this disorder go to: www.wilsonssyndrome.com.
In addition to adrenal and thyroid hormones naturopathic medicine also treats deficiencies in the sex hormones - estrogens, progesterone and testosterone as well as human growth hormone which is often low in CFS and FMS patients. In general these hormones decrease with age and in the case of those with CFS and FMS this loss may be accelerated due to physiological stress of the conditions. Naturopathic physicians often rely on saliva testing to assess hormone levels and obtain hormones from compounding pharmacies.
Immune Dysfunction and Infections are another area of focus in the SHINE protocol and the naturopathic treatment of CFS and FMS. Patients with CFS and FMS are prone to opportunistic infections such as intestinal parasites, candida overgrowth, chronic Lyme disease, mycoplasm, viral and retroviral infections. In general these infections are symptomatic of a person whose immune system is compromised. People with AIDS and autism for example also are susceptible to these infections. Treatment can be an important part of the recovery for many individuals and naturopathic and holistic physicians are well equipped to do this. But for some patients like myself continually chasing after infections did not provide significant improvements. As important to treating opportunistic infections is figuring out how to improve the strength of a person's immune system. Before I did Oral Systemic Balance I was prone to having intestinal parasites. My naturopath would treat one parasite successfully only to find I acquired another parasite the next time I did a stool analysis. Since I improved my breathing with Oral Systemic Balance I have not had any parasites. This I think is a result of getting a more adequate supply of oxygen and thus addressing the underlying source of stress that was compromising my immune system.
Ah Nutrition! One of the mainstays of naturopathic medicine is treating health conditions and nutritional deficiencies with nutritional supplements. Since CFS and FMS affect so many functions of health there are many symptoms one could try treating with nutritional supplements. ProHealth (www.prohealth.com) is a company that sells nutritional supplements for people with CFS and FMS. The company donates a portion of its sales to organizations focused on finding effective treatments and its website contains a lot of valuable information. Their catalog of supplements is huge and demonstrates just how vast the inventory is of things that might be beneficial. Taking nutritional supplements may initially produce some positive results and can serve to "jump start" the system but the effects are often not lasting. Here's why I think this may occur. In CFS and FMS the brain down regulates bodily functions to conserve energy in response to overwhelming physical stress and trauma for which it can no longer accommodate. (For more on this read my post "What Causes CFS & FMS" fibrofriends.typepad.com/fibro_friends/2010/06/what-causes-chronic-fatigue-and-fibromyalgia-syndromes.html). One may feel better initially from taking supplements that address some of the resulting deficiencies but then the body compensates for the supplements returning the levels to what they were previously because it is still functioning at a low level and needs to conserve energy.
Some alternative health practitioners including naturopathic and holistic physicians as well as chiropractors employ muscle testing or kinesiology to evaluate which supplements are beneficial for a patient. Originally developed in 1964 by a chiropractor named George Goodheart and called Applied Kinesiology, there are now many variations of this method of testing. Basically the practitioner accesses the patient's response to a nutrient with a manual muscle test. Muscles become stronger in the presence of a beneficial nutritional supplement or combination of supplements, stay the same with supplements that are safe but provide no significant benefit and become weak in the presence of supplements that are harmful. I think that there is some validity to this method of evaluation but that the results can be skewed by the influence of the practitioner and other factors. I have personally never encountered a kind of muscle testing that was able to predict whether I would have a hyper-reaction to a supplement or not. The best policy is to add one new supplement at a time and assess if there is any change or improvement in one's health.
I personally have spent a small fortune on supplements of all kinds including vitamins, minerals, herbs, amino acids, etc. to virtually no avail and ditto to that for many others I know with CFS and FMS. Every few years there is some new natural substance on the market that promises to be the key to health and those of us with chronic health problems are especially susceptible to trying them. From blue green algae, to mangosteen, Siberian gingseng, mushrooms, beta carotene, colloidal silver, Sam-e, CoQ10, vitamin D, antioxidants, liquid minerals, ... the lists goes on and on. I have tried all these things as well as numerous combinations of supplements prescribed by health professionals with absolutely no benefits. A couple of exceptions are MAX GXL and Super Nutrient Amino Acids, two patented formulas of nutritional supplements which were beneficial for me short term and I discuss in other posts. I remain open minded about the benefits of nutritional medicine but at present I am not taking any supplements. I have come to the conclusion that the best way for me to get my nutrition is through whole foods. I maintain a diet which I arrived at over the years as being the most beneficial for me. It consists primarily of whole grains, green vegetables and organic meat, fish and dairy products. I strictly avoid all forms of sugar, alcohol, caffeine and processed foods.
The last area in the SHINE protocol is "E" for exercise. For those that are able exercise is a valuable adjunct to healing and coping with a compromised health condition. I was fortunate to be able to tolerate mild exercise for the first 28 years of my health condition when I suffered from chronic fatigue. I did a lot of walking, swimming and I had a serious yoga practice. I feel that these activities really saved my life in many ways and kept me in the best possible shape despite the challenges I lived with and the fact that my condition was generally getting worse. Then in 2001 I crossed some kind of threshold and developed fibromyalgia. I was devastated because once this happened physical exertion worsened my condition, my insomnia and my pain. I had to give up the very things that had sustained me through my illness - exercise and playing music. It was a devastating blow. Some health professionals including Teitelbaum state that fibromyalgia is the same condition as chronic fatigue syndrome except it is accompanied with widespread muscle aches and pain. This in not entirely accurate because many people with chronic fatigue syndrome have aching muscles but do not have the muscle dysfunction typical of fibromyalgia. In fibromyalgia the muscles are chronically agitated and over contract when used resulting in pain and adhesion in the muscle tissue. When a person with fibromyalgia forces their muscle to work they develop sore points or trigger points. To learn more about this read my post "Fibromyalgia Muscle Dysfunction" fibrofriends.typepad.com/fibro_friends/2009/12/f.html. So despite advice by many health professionals to the contrary, exercise in general agitates the sympathetic nervous system in people with fibromyalgia and is not a good modality for healing.
A final area in the treatment of CFS and FMS by many naturopathic health professionals, although not specifically covered in the SHINE protocol, is Detoxification. There is compelling research that shows that persons with CFS and FMS have impaired detoxification which is referred to by some as a "Methylation Cycle Block". I personally spent years pursuing various detoxification protocols with very modest improvements. After undergoing an extensive heavy metals detoxification program consulting with some of the most reputable doctors in the field my levels of mercury remained extremely high as measured by a hair analysis test three years later. Obviously the protocols did not work. To learn about my exhaustive search in this area read my post "Detoxification" fibrofriends.typepad.com/fibro_friends/2009/05/detoxification.html. I think that the detoxification problem in persons with chronic fatigue and fibromyalgia syndromes is the result of a lack of oxygen due to impaired breathing and dysfunctions of the Central Nervous System or the brain in response to overwhelming physical stress, and that no amount of nutritionally based detoxification programs can reverse this problem. My personal recovery from chronic fatigue resulted from improving my breathing with Oral Systemic Balance and addressing the post traumatic brain injury with LENS neurofeedback. At present these modalities are not yet fully understood or prescribed by naturopathic and holistic physicians.
I am sure that there are many individuals with CFS and FMS whose conditions respond well to naturopathic medicine. Every person is unique and it is only through trial and error that one can discover what is helpful. For myself healing required me to dig deeper and find more effective, cutting edge modalities. I know that these therapies will be embraced first by the alternative medical community because its practitioners are open-minded and eventually by the mainstream medical community as well. I keep in touch with a number of my naturopathic and holistic doctors who have followed my case over the years. I continue to seek their advice and to keep them abreast of my situation. I appreciate their support and feel that they are true allies in my quest for better health.
Here is a small sample of nutritional supplements that I tried. None produced significant improvements in the long term.
