What Didn't Work

I have pursued many different therapies and treatments in my search for better health.  Most of them were not helpful in addressing the underlying condition of my chronic fatigue and fibromyalgia however some provided temporary relief or had other benefits. Finding out what didn't work and how I responded to various treatments helped me gain a better understanding of my health condition through trial by error. In general I pursued one therapy at a time so I could assess their effectiveness however there were times when therapies overlapped. It is important to note that this summary reflects my own personal experience and that the therapies may have different outcomes for other. 

“Whitcomb Method” of Chiropractic Care now called “Neuro-Resetting Technique" or "Neurological Relief Center Technique” practiced at Neurological Relief Centers 

I was a patient of Dr. Paul Whitcomb in South Lake, Tahoe for 3 months. I got temporary relief of muscle pain and fatigue. My symptoms returned 6 weeks after leaving the clinic. For more on my experience read my post “Paul Whitcomb – Friend or Foe?” fibrofriends.typepad.com/fibro_friends/2008/08/paul-whitcomb---friend-or-foe-1.html

Hyperbaric Oxygen Therapy

I had 31 one and a half hour sessions of hyperbaric oxygen over the period of two months. The therapy was advertised as being helpful for fibromyalgia but provided no change in my symptomology. A side benefit of the therapy is that it helps with high altitude sickness. When I travel to a place where the altitude is high I have a hyperbaric oxygen session beforehand and adjust to the change in altitude with no adverse symptoms.

Relaxin Hormone Therapy - Gluten/Cassien Free Diet

I took the hormone relaxin orally for six months and relaxin hormone injections, which I administered daily for two months. During this time I was a patient of Dr. Samuel Yue, a doctor from Minnesota who believes that fibromyalgia is caused by a deficiency of the hormone relaxin. In addition to taking relaxin, Dr. Yue prescribed a casein (milk protein) and gluten free diet, which I followed religiously for six months and various supplements including L-carnitine, magnesium and COQ10. Dr. Yue believes that “leaky gut syndrome” contributes significantly to fibromyalgia allowing undigested proteins to leak into the tissues and that relaxin replacement along with his prescribed diet and supplements allow the walls of the small intestine to heal. My fibromyalgia became progressively worse while I was on this program. A subsequent test showed I did not have leaky gut syndrome.

Alkaline Water

Some health practitioners and individuals are proponents of drinking alkaline water and claim there are benefits for those with chronic health problems including fibromyalgia. The alkaline water is produced by a machine that filters and then separates water through electrolysis into various levels of PH. I purchased an expensive LeveLuk unit for my home and did a six-week trial of drinking the more alkaline “Kangen” water. My stools became very loose to the point where I was seeing undigested food in them and I had abdominal pain and bloating. Nine months later I repeated the trial drinking a very small amount of Kangen water and increasing the amount slowly. The results were similar. I believe that my gastrointestinal symptoms worsened because I have low stomach acid, a condition common in many people with CFS, and drinking the alkaline water agravated this condition. Side benefits of owning the unit are that I use the filtered neutral PH “clean” water for drinking, I cook oatmeal and rice in the alkaline water and the texture of the grains is smoother and the more acid water is excellent for cooking pasta and hard boiling eggs. (Egg shells peel easily!)

AtlasProfilax

AtlasProfilax is a physical therapy developed in Switzerland by Rene-Claudius Shumperli, which employs a vibrating instrument that massages the sub-occipital muscles of the neck, which results in a freeing and relocating the first cervical vertebra or atlas. The treatment is gentle, safe and usually permanent typically requiring only one session. I noticed no change in my health as a result of this treatment. However some people with fibromyalgia have reported relief of symptoms after getting an AtlasProfilax treatment. Check my post “AtlasProfilax” for their stories. fibrofriends.typepad.com/fibro_friends/2008/10/atlas-profilax.html 

Guaifenesin 

Dr. R. Paul St. Amand developed a treatment of fibromyalgia using guaifenesin, an expectorant  which is commonly found in over the counter cold remedies. St. Amand  believes that the retention of calcium in the cells of fibromyalgia is a result of an inability to produce energy or ATP (adenosine triphospate - a biochemical term for cellular energy) and an abnormality in phosphate excretion. I followed his protocol, which involved taking regular doses of guaifenesin and avoiding products that contain salicylates for four months with no noticeable improvements. Ten years later I tried taking guaifenesin again. It improved my sleep for four nights, then I habituated to it and it started to agitate my body.

EMDR

EMDR or Eye movement desensitization and reprocessing is a psychotherapy developed by Franine Shapiro which alleviates symptoms of post traumatic stress disorder. The goal of the theapy is to process distressing memories so that they no longer have lingering effects. This is done with a specific protocol where patients recall distressing memories while receiving bilateral sensory input that includes side to side eye movements. I did a series of five EMDR treatments around the emotional trauma for being chronically ill. It was not helpful.

Neurofeedback Training

Over the course of several years I did many EEG biofeedback or neurofeedback training sessions. The system I used was Zengar NeuroCare. It is designed to train the entire central nervous system and is considered one of the most advanced in its field. Training sessions involved sitting in a comfortable chair with sensors placed on either side of the scalp that pick up brain wave activity. Feedback is produced through visualization on a computer monitor and sound and is monitored by a technician. Neurofeedback training is an effective tool for addressing stress and sleep irregularities in many people but I did not experience any improvement in these areas even when I did the training intensively (once a day for a month). I did notice an improvement in my cognitive abilities and memory during the period I did neurobiofeedback, which included some of my worst periods of fibromyalgia. I never experienced any brain fog symptoms and this may be a result of the training. I did however experience significant improvements from a different form of neurofeedback called LENS or Low Intensity Laser Therapy that operates on an entirely different premise. For more on that and my extensive experience exploring various areas of biofeedback go to my post "Biofeedback Therapies for CFS & FMS". fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html

Enhanced External Counterpulsation (EECP)

EECP is a noninvasive treatment that strengthens the cardiovascular system and improves blood circulation. It uses a machine that pumps pressurized air through oversized blood pressure cuffs that wrap around the patient’s clave, thighs and buttocks that inflate and deflate in synchronization with the heartbeat. EECP has been clinically proven to reverse the effects of heart disease because it promotes the development of new blood vessels that bypass coronary blockages and in fact is safer and more effective than surgery and other invasive procedures. It also is beneficial for a variety of other conditions including diabetes, erectile dysfunction and peripheral neuropathy. I was recommended EECP by one of my physicians who thought that my muscle fatigue might be a result of poor circulation. I did 37 sessions of EECP with no improvement in my muscle fatigue. The treatments did however result in an improvement in my cardiovascular health as measured by blood pressure readings in the sessions.

Acupuncture

I have pursued a variety of forms of acupuncture over the years including Classical Five Element, Japanese style, and the more traditional Chinese style of acupuncture.  In the early 1990’s I worked extensively with a Classical Five Element acupuncturist whom I saw once a week for over a year. At first the treatments were quite helpful in alleviating my insomnia and night sweats but with time the effects lasted less longer and eventually became ineffective. My intuition was that the acupuncture initially served to “trick” my nervous system into a state of balance but because of the systemic nature of Chronic Fatigue Syndrome, the balance did not hold. Subsequent trials of acupuncture including one quite recently failed to produce any positive results and I had several incidents where the treatment was too aggressive and this resulted in my nervous system reacting in a negative way. A good acupuncturist can accurately diagnose many imbalances and weaknesses in a patient, which can provide useful feedback.

Nambudripad’s Allergy Elimination Technique (NAET)

NAET is a technique that employs a form of muscle testing or applied kinesiology to diagnose allergies and treats them by removing the blockages of energy associated with them through acupressure. The technique is based on principles of Chinese medicine and the meridians or energy pathways that correspond to various major organs of the body. Persons with CFS/FMS often have severe allergies to foods, chemicals, pollutants and plants and benefit from this treatment. This was not the case for me. I was treated for over 50 allergens over a period one and a half years and had no improvement in my health as a result. I also pursued other therapies based on the same principles of kinesiology and acupuncture: NeuroModulation Technique (NMT) and the The Body Restoration Technique (BRT) with no success; and Advanced Allergy Therapeutics, a therapy similar to NAET.

Nutritional Supplements

Like many other persons with CFS and FMS I have spent lots of money on nutritional supplements with no perceivable results. This has included various vitamins, minerals and herbs prescribed by "alternative" health practitioners and a multitude of natural products that claim to be beneficial for health. A couple of exceptions were MAX GXL, which is a patented formula of nutritional supplements that raise glutathione levels; Platinum Plus Essential Amino Acids, a patented formula of amino acids specifically developed for fibromyalgia patients, 5HTP, ginger root, and phosphatidyl choline. These supplements seemed to bump me to the next level of my recovery, then after a period of several months they provided no further benefit and I started reacting negatively to them. For more information on nutritional supplements read my post "Treating CFS and FMS with Naturopathic Medicine.fibrofriends.typepad.com/fibro_friends/2010/08/treating-cfs-fms-with-naturopathic-medicine.html.

Anti-Candida Program

For six months I followed an anti-candida program under the supervision of a naturopathic physician. The program included following a strict diet and taking a regimen of herbs, probiotics and other nutritional supplements in a prescribed schedule. I experienced no improvements in my health as a result of this program.  

Heavy Metal Detox

A hair analysis test done by the laboratory Doctor's Data showed that I had high levels of mercury, cadimium and lead; and low levels of many essential elements. I embarked on a two year intensive detoxification program under the supervision of my naturopathic physician and a medical doctor who specialized in mercury toxicity. The program included taking DMPS (an oral chelator), alpha lipoic acid, cilantro, antimicrobial herbs, coffee enemas, lymph massages and nutritional suplements. My health improved somewhat on this program but the effects were not lasting. Three years after completing the program I repeated the hair analysis. The results were almost identical with slightly higher levels of the toxic metals and slightly lower levels of essential elements.

Neural Therapy

Neural therapy is an alternative treatment for a variety of medical conditions including chronic pain and allergies that was developed in Germany and is practiced in the United States by Dr. Dietrich Klinghardt and other holistic physicians. The therapy involves an injection of the anesthetic Procaine into various points of the body. It is based on the theory that trauma can produce long-standing disturbances in the electrochemical function of tissues. The areas affected by trauma include autonomic ganglia, peripheral nerves, scars, glands, acupuncture points, trigger points, skin and other tissues. I did ten treatments of neural therapy in surgery scars (thyroidectomy, Cesarian section, wisdom teeth extraction) as well as general treatments along my spine. The treatments produced no noticeable changes in my health.

Bioidentical Hormones

Bioidentical hormones are plant based hormones that have the same molecular structure as the hormones in the human body. These hormones which include estrogens, progesterone, DHEA and testosterone are available by prescription from a compounding pharmacy in an individualized dosage determined by saliva tests. Bioidentical hormone replacement is considered a "natural" alternative to Hormone Replacement Therapy that uses patented synthetic hormones in standardized amounts for the relief of menopausal symptoms. The stress of menopause and perimenopause can compound difficulties experienced by women with CFS and FMS however I did not find that taking bioidentical hormones was helpful for me personally for relieving any symptoms including those of menopause. Natural progesterone and DHEA increased my night sweats. I also had a bad reaction to transdermal testosterone. I found relief from menopausal symptoms from taking Activella, a hormonal replacement therapy manufactured by a drug company in Denmark that combines a natural or plant derived form of estridiol with synthetic progesterone or progestin. For more on my experience with female hormone replacement therapy and its benefits for women with fibromyalgia go to: http://fibrofriends.typepad.com/fibro_friends/2012/02/hormone-replacement-therapy-an-effective-adjunct-treatment-for-fibromyalgia-and-chronic-fatigue-synd.html 

Pharmaceutical Drugs

I am extremely sensitive to pharmaceutical drugs and avoiding them has been key to coping with my health condition. This is due to cellular oxygen depletion and/or impaired detoxification and poor liver - all common components in CFS/FMS.  After years of insomnia I tried several drugs for sleep, which I quickly built a tolerance to and resulted in severe withdrawal symptoms – undoubtedly the most harrowing experience of my life. For more on that read my post “Waiting for Sleep” fibrofriends.typepad.com/fibro_friends/2009/10/waitin.html . I know that others with CFS/FMS are not as sensitive and have obtained some relief of insomnia and pain with drugs, however in the long run I believe that pharmaceutical drugs are counterproductive. 

Cranial Electrotherapy Stimulation (CES)

CES is a non-pharmacological alternative which employs mild electrical stimulation for the treatment of anxiety, depression and insomnia. A small unit powered by a nine volt battery transmits current to clip-on electrodes attached to the earlobes or pre-gelled electrode pads placed behind the ears. Recommended usage is 30-45 minutes once or twice daily. Many people experience a relaxed alertness during sessions and a gradual diminishing of symptoms and normalization of sleep patterns. The therapy is thought to stimulate pre-stress homeostasis in the brain. I tried CES for two sessions to help improve my sleep. Unfortunately the sessions produced increased muscle tone at the base of my skull, mild headaches, fatigue and depression. 

Magnets

Nikken is the most well-known health supply company that has developed a line of products that use static magnets. Daily use of magnets is supposed to counterbalance the negative effects of modern civilization and to promote healthy energy and balance. Products include magnetic jewelry, seat cushions, water products, massage tools and a sleep system with magnetic mattresses and comforters. I tried the sleep system for a month. It did not improve my insomnia and eventually made me feel agitated.

Earthing

Earthing is the practice of connecting with the energy emanating from the surface of the earth by standing or walking barefoot on the ground; or through the use of floor pads and conductive bed sheets linked by a wire to a ground rod outside or plugged into a wall outlet with a ground system. Reported benefits of Earthing on a regular basis include improved sleep, increased energy, improvement or elimination of symptoms of auto immune and inflammatory disorders, accelerated recovery from intense physical activity, normalization of the body's biological rhythms, reduction of jet lag, relief from hormonal and menstrual symptoms, and protection against environmental electromagnetic fields (EMFs). Some persons with CFS and FMS have reported dramatic improvements in their conditions especially in the area of sleep from Earthing. I experience a general calming when walking barefoot or lying on the ground which is particularly helpful when my nervous system becomes agitated.  I had a bad experience however with the Earthing products which I tried for three weeks sleeping on a grounded sheet and using a floor pad while working at my desk. The negative effects accumulated gradually resulting in brain fog (a symptom that I never had before), a serious relapse in my fibromyalgia, exhaustion and emotional instability. 

MRS2000

The MRS2000 is a pulsed electromagnetic field (PEMF) device that duplicates or mimics in intensity and frequency the earth's natural electromagnetic signals which include Schumann and geomagnetic waves. Described as a "whole body battery charger" that provides a catalyst for energy production in the cell and helps to increase oxygenation, hydration and nutrient absorption, the MRS2000 is recommended for health maintenance as well as resolution of chronic health problems.  The device includes a mat that persons lie on for 8 minutes twice a day and an applicator probe for use on problem areas. I lay on the mat for 2 minutes at the most sensitive level and had a dramatic aggravation of my nervous system, which triggered a flare of my fibromyalgia. 

HeartMath

HeartMath is a company that has developed a heart rate variability (HRV) biofeedback technology called emWave which analyzes the beat to beat changes in the time intervals between heart beats, a measure of physiological stress. The program teaches the user to create positive heart rhythms that have a calming and balancing effect on the brain and entire body. Mastering this "coherence" technique through a three step process and the visual and auditory feedback from the emWave can improve health, energy, mental clarity and emotional balance and sleep. I am able to achieve coherence consistently even at advanced levels by doing a slow exaggerated breathing technique where I slowly inhale to full capacity and slowly exhale pushing my stomach as far in as possible to push out all the air. I practiced HeartMath on a daily basis for six months but experienced no noticeable improvements in my sleep or health as a result of this. 

Human Probiotics

Human Probiotics is a system of biochemical supplements in the form of peptides and amino acids developed by an independent scientist named Dan West. The supplements contain human sourced probiotics that are reintroduced into a person's gastrointestional tract orally.  The reintroduction of these microbes into the gut is supposed to repair the immune system, correct methylation problems and restore serotonin levels in the brain. I traveled to Massachusetts ten times to receive a custom supplement from Dan West. Although I had some short term positive changes after taking some of the supplements and a generally calming of my nervous system that was more long lasting, I did not experience any improvements in my underlying physical condition. 

Ozone Therapy

The therapeutic use of medical ozone is used since in a wide spectrum of diseases including candida, cancer, infections, and heart disease. It is thought to increase oxygen and stimulate the production of white blood cells necessary to fight infections and to inhibit the growth of diseased cells, pathogenic microbes and bacteria. Ozone (O3) from a generator is administered through rectal or vaginal insufflation, intervenous injections or through autohemotherapy which involves removing about one half pint of blood from the patient, adding ozone and ozygen to the blood and infusing the blood back to the patient. I did 8 ozone treatments (2 rectal, 2 vaginal and 4 IV). I did not recieve any long lasting benefits from the treatments and built a tolerance to them ultimately resulting in an provoked agitation to my nervous system. 

Low Dose Naltrexone

Low doses (2-5 mg.) of naltrexone  taken at bedtime produce a brief blockage of opioid receptors between 2 and 4 am, which stimulates the pituitary's production of endorphin and enkphalin. This has shown to be helpful for many patients with fibromyalgia, chronic fatigue and Small Intestine Bacterial Overgrowth (SIBO). It was prescribed for me as prokinetic agent for SIBO because it can stimulate gut motility. I took it for three weeks but discontinued because it disturbed my sleep.

NanoVi

NanoVi is a bio-identical signaling device manufactured by eng3 corporation that produces ROS (reactive oxygen species). The signal is transferred through humidity in an air stream that you inhale through a nasal cannula. This stimulates the body's oxidative response and assists in strengthening the immune system, optimizing energy, slowing the aging process, fighting oxidative stress-related disease and speeding recover and regeneration. My first session using this technology was positive but subsequent sessions produced a negative response, agitating my nervous system.

Glycine

Glycine is a non-essential amino acid that has helped people with disordered sleep without the sedative or hypnotic effects of other sleep aids. I took it for ten days. It was not helpful and made my sleep a bit lighter and disturbed.

Quercetin

Quercetin is a bioflavonoid found in plants that is thought to provide health benefits through cell signalling pathways and antioxidant effects. Studies show that it can inhibit the release of histamine in mast cells that may help symptoms of allergic and inflammatory diseases. I had a positive response to quercitin initially but quickly habituated to it and then it started to agitate my body.

MTHFR

MTHFR is a gene that provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins and is important for a chemical reaction involving forms of the vitamin folate (also called vitamin B9). There is a movement in alternative medicine led by researchers including Drs. Ben Lynch and Amy Yasko that associate MTHFR gene mutations with chronic illness including neurological disorders, cancer, austism and CFS and FMS. I worked with a physician who was attended MTHFR Support webinars. I was tested for these mutations but did not have any of them. Further genetic testing based on "23 and me" raw data found other genes associated with secondary methylation problems however I was not able to tolerate any of the prescribed supplements to treat these.

Methylation Disorders

A system of treatments based on the work of William Walsh, PHD and Albert Menash, MD associates mood imbalances, depression, focus and attention syndromes and other chronic diseases with copper overloads and out of balance methylation pathways. I consulted with nutritionist Samantha Gilbert who has training in this field. Based on functional ranges indicated by Walsh and Menash, my lab results indicated high levels of copper and low levels of zinc, and I had elevated levels of kryptopyrolle in my urine indicating Pyrolle disorder. Based on these results I was diagnosed with a condition of undermethylation and prescribed zinc, B6 and a diet low in folate found mainly in leafy green vegetable. I had an adverse reaction to zinc and B6 even at very low doses and the diet was detrimental to my health.

Amethyst Biomat

The Biomat is an electrical healing device that uses a combination of fabrics and Amethyst stones to generate negative ions and far infrared rays that the human body absorbs as heat. Many patients with fibromyalgia have reported a reduction of pain from using it on a regular basis. I used the first setting with generates negative ions alone. After two sessions the therapy started to agitate my nervous system worsening my sleep and muscle pain. I did not try the infrared setting as it includes the negative ions.

Anabolic Steroids

Dr. Edward Lichten is a gynecolgist who prescribes anabolic steroids for a variety of conditions including fibromyalgia and chronic fatigue. He believes that environmental toxins disrupt the endocrine system as evidenced by an increase in blood levels of Sex Hormone Binding Globulin. He prescribes the man made steroids oxandrolone, nandralone and winstrol to patients, which can reduce their levels of SHBG and improve their conditions. I took two injections five days apart of the anabolic steroid nandralone and had a very bad response. I had severe breast tenderness for two and a half weeks and inflammation of the muscles around my breast as well as a general aggravation of my muscle condition for six weeks.

CBD

Cannabidiol (CBD) is a plant based cannabinoid found in hemp that effects the endocannabinoid system without the psychotropic (high) effects of THC, which is found in marijuana. Cannabinoid-rich hemp oil is prescribed for many chronic health conditions including pain management, inflammation and stress.  Many people with fibromyalgia report benefits from taking CBD on a regular basis. My experience taking CBD was not positive. It made me feel very tired and spacey mentally. It did not improve my sleep or fibromyalgia muscle pain, and it was not effective in helping me when I experience an agitation of my nervous system as a result of my sensitivities to certain foods and supplements. 

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Hmmm. Read your experiences with Kangen water. I certainly won't argue with the experience you had, but I find the conclusions you draw shaky. I have had CFS for over ten years now and have been drinking the ionized water for a month. While I'm certainly not cured (yet!), I can definitely report that my digestion is improved. In fact, I had the opposite experience from yours: my stools had been loose for years and became firmer, darker, and the undigested bits of food I had seen for years are gone. Clearly, you cannot safely assume a. that all CFS/FM patients have low stomach acid and/or b. that the water's impact on your digestive system is generalizable to other CFS/FM patients. In any case, I wanted to make this comment so that others didn't rush to judgment about ionized water based on your post. I think people need to try these things for themselves until there are sufficient studies to provide some reliable guidance based on larger populations with controls.

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[Darden Burns]

Thanks for you comment. I am glad to hear that the Kangen water is helpful for your situation. I was careful to preference my "What Didn't Work" post with the following statement: "It is important to note that this summary reflects my own personal experience and that the therapies may have different outcomes for other." Many people with CFS including myself have low stomach acid but I realize that this may not be the case for everyone so I edited my paragraph on this a bit. It is interesting that the symptoms caused by too much or too little stomach acid can be similar. In each case the gastrointestinal track is out of balance and is vulnerable to various pathogens. Recently I have been doing research on Helicobacter pylori which according to several diagnostic tests is a problem for me. Although overgrowth of this bacteria is commonly associated with too acidic an environment, it also becomes problematic for persons with low stomach acid.

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I was looking for something else on the Internet when I stumbled upon this website and though I haven't read it thoroughly, I am amazed by the fact that I no one has mentioned what my Naturopath told me about Fibromyalgia. She said it's from an extreme overgrowth of yeast which builds up in the muscles and around the joints. I have been cured of it twice, once when it was so severe I could barely walk when I did get out of bed and the 2nd time was less severe because I was able to recognize the symptoms quicker. I have a Chinese doctor that concurs, they treat the conditions a little different but the end result is the same. That much yeast overgrowth in the body then causes problems throughout the rest of the system (not just the muscles). She gives me this cool shot (apparently from Germany), these suppositories I use for a week and I am a normal person again. The 1st time was so severe I had to do the treatment twice in a row but, 3 years later, I'm fine. I work primarily with my Chinese doctor now because when I do get sick I can't take antibiotics or I'm in that boat again. For those that don't know the difference, Traditional Chinese Medicine and Acupuncture are 2 different things. Traditional Chinese Medicine uses custom herb formulas to treat EVERYTHING. Acupuncture is designed to treat pain and other issues that can be addressed through nerve points. Even my Chinese doctor (whose wife is an acupuncturist) agrees that CFS and Fibro are not helped in the least bit by acupuncture. Traditional Chinese Medicine is not covered by insurance but, 110 times better for you than anything insurance would pay for. For anyone out there looking for Traditional Chinese Medicine doctors, don't be fooled by Chiropractors who are only offering acupuncture. If you walk in and they don't have their walls lined with boxes of dried herbs (and I mean 100's), they are not true Traditional Chinese Medicine doctors. Good luck to all.