My health problems began in the fall of 1973 after an evening when I drank a “rum and Coke” at a college dorm party. The next day I felt hung over with fatigue and a fuzzy headache, which basically never went away. At first I thought it was the flu but after several weeks it became apparent that something else was amiss. To my dismay the medical doctors I consulted at that time could not find a cause for my symptoms and attributed them to “stress”. And so I was from the outset on my own trying to understand and manage my condition. I became aware of an impaired ability to tolerate drugs and eliminating them from my intake made a significant difference in reducing my headaches and ensuring that I slept well. This meant avoiding caffeine, alcohol, sugar and most over the counter medications including aspirin, Tylenol, antihistamines, etc. Over the years the list of things I needed to avoid grew to include anything sweet including fruit and various additives in foods.
By the mid-80’s I was suffering from severe night sweats and insomnia, which I could no longer control with my diet. I went to see Dr. Johannes Lui, a well-known practitioner of Chinese medicine in the Seattle area. Dr. Lui did acupuncture points in the ear and gave me some herbs to make a tea. His treatments provided some relief at first but subsequently became less effective. Dr. Lui said that I had chronic liver problems – a form of hepatitis. Around the same time I saw a shiatsu therapist with a background in oriental medicine. The therapist said I had a “restricted” liver, which could explain my sensitivity to alcohol and sugar. He recommended I go on a fast for 5 days drinking water that had small amounts of maple syrup, lemon and cayenne pepper in it. After 2 days I became so ill and weak on the fast that I discontinued it. I researched liver disease at a medical library and consulted a gastroenterologist who found nothing irregular in my blood work.
In 1993 I saw a holistic medical doctor who ran a test, which measured liver impairment and detoxification capacity through caffeine clearance and benzoate challenge tests. This test showed significant liver dysfunction with highly irregular values in both the oxidation and conjugation phases. He prescribed nutritional supplements, which included milk thistle or silymarin, selenium, dandelion root, NAC, vitamin C and other antioxidants. This protocol failed to produce any improvements. During this time I suffered from frequent flus, never going more than 6 weeks before coming down with another virus. I did various protocols for improving the immune system, which included taking lots of vitamin C, garlic, and the herbs Echinacea, lomatium and astragalus with no results. Researchers in Chronic Fatigue Syndrome in the 1990’s including Dr. Paul Cheney identified abnormal liver function and impaired ability to detox in CFIDS patients. They recommended a metabolic clearing program using the product “Ultra Clear” which I did for several weeks. This also failed to be helpful. Finally I embarked on a seven day fast that included drinking psyllium and bentonite shakes and doing two colonics daily (a therapy for colon cleansing pioneered by Bernard Jensen and V.E. Irons). I passed large amounts of dark mucous from my colon during the colonics. After completing the fast I had a period of several years when I felt much better and I rarely got sick with a colds or flus again. My insomnia and night sweats however persisted.
In my community there are a couple of women who are considered “medical intuitives” and subscribe various diets, herbs and remedies to help people. Both said that the liver was a key issue for me but their remedies were not helpful. I also pursued for several years to no avail therapies that were designed to eliminate allergies and sensitivities. These included the Nambudripad Allergy Elimination Technique, NeuroModulation Technique and food antigen programs utilizing electroacupunture diagnosis. And for six months I pursued a Candida elimination diet and treatment program.
Despite all my efforts my health continued to decline and in the fall of 2001 I developed fibromyalgia. My muscles could no longer sustain any weight bearing exertion without resulting in injury and pain in my tendons and muscles. In 2003 I was diagnosed with mercury poisoning and Lyme disease by my naturopathic physician. I spent two years addressing these issues through holistic therapies under the supervision of my naturopath and Dr. Dietrich Klinghart, a famous holistic medical doctor whose specialties include mercury toxicity and Lyme disease. My treatment consisted of intravenous therapy containing B & C vitamins, magnesium and glutathione (Meyers’s cocktail); heavy metal detox with the drug DMPS and alpha lipoic acid; antimicrobial herbs; infared saunas; lymph massages; and jaw cavitation surgery. My energy improved but my fibromyalgia did not. I went on a gluten and casein (milk protein) free diet for six months.
My overall health continued to decline until I began Oral Systemic Balance in the fall of 2007. (For more information see my post on Oral Systemic Balance fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html). Improving my ability to breathe through Oral Systemic Balance brought me out of the dark hole that my health had collapsed into however it did not resolve many of my health issues. I felt that I had moved from a survival state where I was struggling with life’s most basic element – air- to an exhaustive state. I could get away with doing more things but I still could not exercise or practice the piano, my sleep was remained very disturbed and my food and drug sensitivities were quite severe.
In January of 2009 I received from a friend the book “Glutathione” by Dr. Robert Keller. The title of the book immediately caught my attention because I was aware of glutathione’s important role in detoxification and liver function. Dr. Robert Keller is a world-renowned medical researcher and clinician whose specialty includes chronic fatigue and fibromyalgia. He observed that his chronically ill patients shared the unusual laboratory anomaly of low uric acid. (I had laboratory tests from as early as 1993 that show low uric acid levels). Dr. Keller discovered through research that uric acid is used in the body as the last line of defense when all other antioxidants have been expended. This led him to research glutathione, the primary or most important antioxidant and agent of detoxification found in every cell of the body. Reduced glutathione levels occur in many illnesses and result in damage to the mitochondria, the energy producing part of the cell. To download interesting articles written by Rich Van Konynenburg, Ph.D.,an independent researcher about the role of glutathione depletion in Chronic Fatigue Syndrome" go to: http://aboutmecfs.org/Trt/TrtGSHIntro.aspx.
It is not possible to absorb glutathione orally because it is destroyed by stomach acid. Some physicians treat chronically ill patients with glutathione injections or include glutathione in a intravenous solution with vitamins and minerals. These therapies are expensive and their effects immediate and short term. There are also a number of glutathione promoting nutritional supplements including vitamin C, alpha lipoic acid, milk thistle and N-acetyl cysteine, which can provide the precursors to building one's own glutathione. Dr. Robert Keller spent 18 years studying these supplements and running clinical trials until he came up with a formula for an ideal glutathione optimizer. That formula is a patented product called MAX GXL sold through network marketing, which has been proven in an independent double blind placebo controlled cross over study to raise glutathione levels if taken as directed. For more information go to www.maxgxl.com.
I took MAX GXL for six months in the beginning of 2009 beginning with a very small dose and gradually increasing. I noticed some general improvements in my health while taking MAX GXL however I still had significant problems with sleep, muscle function and energy. I think that MAX GXL is a excellent nutritional product for facilitating detoxification and increasing glutathione levels and that it may benefit many CFS/FMS patients however it was not the "silver bullet" for me in resolving my remaining issues. An alternative modality to raising glutathione levels through nutrition is are using nanotechnology homeopathic patches that stimulate the cellular production of glutathione through acupressure points. The patches are produced by a company called Lifewave and have been clinically shown to increase blood glutathione levels. For more information go to: www.lifewave.com.
Out of curiosity I did a laboratory test with SpectraCell that measures antioxidant levels six months after discontinuing MAX GXL. My antioxidants were within moderately optimal levels. I suspect that this is a reflection of getting increased amounts of oxygen and air from Oral Systemic Balance. I also repeated a hair analysis test that measures the levels of heavy metals and found that despite the extensive detox program I had undergone four years previously, the test results were almost identical showing mercury levels high. Obviously the protocol I followed failed. I think that the problems with detoxification in persons with chronic fatigue and fibromyalgia syndromes are the result of dysfunctions of the Central Nervous System or the brain in response to overwhelming physical stress. In his research on this topic Rich Van Konynenburg, Ph.D refers to a "Methylation Cycle Block" which is responsible for detoxification problems in persons with chronic fatigue syndrome as well as autism.
In 2008 I began a program of Mud Pack Detoxification Therapy under the supervision of Dr. Ralph Golan, a medical doctor who practices "alternative" medicine. Dr. Golan was trained in this therapy and a form of applied kinesiology or muscle testing by Dr. Robert Marshall. One of the most important and often overlooked areas that prevents the body from healing according to Dr. Marshall is the physical trauma caused by things such as fractures, injuries, surgery scars and vaccination scars. These areas can become weakened causing toxic chemicals and metabolic toxins to accumulate there and creating interference fields or blocked energetic pathways that can weaken organs and glands. Through the use of mud packs toxins can be pulled out externally from interference fields reestablishing normal healthy energy which can resolve physical symptoms and chronic health conditions. Through QRA Dr. Golan identified three interference fields in me: a Cesarean scar, an episiotomy scar, and a vaccination scar. I mud packed these areas according to a subscribed schedule and instructions.
Mud packing my Cesarean and episiotomy scars went smoothly, however when I tried treating my vaccination scar, I had a bad reaction similar to the one I get when I consume a stimulant or take a drug resulting in very disturbed sleep and night sweats. When I had the area retested by Dr. Golan it had not cleared and my "download" sites in my hands and feet, areas where toxins leave the body were blocked. I then went through a lengthy schedule of mud packs to unblock these areas and repeated treating the vaccination scar but had the same bad reaction several times.
In August of 2009 I began LENS (Low Intensity Neurofeedback System), a therapy which addresses dysfunctions of the Central Nervous System and post traumatic brain injury. LENS is a unique form of neurofeedback developed by Len Ochs where the brain receives feedback of its dominant brainwave frequency at an offset. The short sessions which last only seconds in duration produce profound shifts away from dysfunctional brain patterns and result in re-integration of the brain in more healthy and flexible patterns. When I started LENS I found that I could no longer tolerate taking MAX GXL. One interesting phenomena that occurred for a period of several months immediately after my LENS sessions was a strong aromatic taste in my mouth that lasted up to 15 minutes followed by strong smelling urine. My intuition is that this was a manifestation of detoxification and that LENS was breaking up dysfunction patterns in the brain that cause impaired detoxification. If this is the case LENS offers a huge breakthrough in the treatment of CFS and FMS.
In the fall of 2010 I went back to see Dr. Golan and gave mud pack therapy another try. According to Dr. Golan's analysis through QRA my vaccination scar was still weak and "reflexing" off my adrenal glands, a chronically weak area for me. I repeated the mud packs on my vaccination scar and this time had no adverse effects. In general I felt as if a layer of stress was lifted from my body and a chronic pattern of pain on the left side of my body starting at the top of my head, going down the left side of my neck and into my left shoulder and mid back, which was triggered by stimulants and stress has not reoccurred since I treated the vaccination scar on my left arm and I seem to have reached another level in my overall recovery from the therapy. I do not think this would have been possible without doing LENS. I suspect that detoxification is no longer an issue for me and I plan to verify this by repeating a Detoxification Profile in the future to confirm this.
In conclusion I think that impaired detoxification in persons with Chronic Fatigue and Fibromyalgia is a result of the brain down regulating functions in response to overwhelming physical stress. Pursuing nutritionally based detoxification programs may provide temporary results but the problem will continue. To reverse this condition one must address the underlying stressors that caused the condition and the resulting traumatic patterns in the brain. For myself this was achieved by improving breathing with Oral Systemic Balance, LENS neurofeedback and Mud Pack Therapy.
People living with liver disease must address two separate issues regarding prevention. The first concerns preventing the spread of a potentially infectious liver disease—namely viral hepatitis—to others. Fortunately, the hepatitis A and B vaccinations are available and are an effective means of preventing a person from becoming infected with these types of viral hepatitis. The second issue concerns the importance of preventing additional liver diseases in people already living with liver disease. People with chronic liver disease often experience a severe if not life-threatening course of disease when infected with acute hepatitis A. And some people who have had a liver transplant are at risk for developing hepatitis B, which could lead to dysfunction of the transplanted liver, fulminant hepatitis, and/or cirrhosis. It is of utmost importance that all people with chronic liver disease receive the immunizations for hepatitis A and B. Please refer to “Vaccinations” for a discussion of the importance of vaccination, both for people living with or in close contact with someone who has viral hepatitis and for all people with chronic liver disease of any type. This section discusses some general preventative strategies which all people with liver disease, their loved ones, and their friends should be aware.
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