To emphasize the problems with not only naming the illness, but also in discriminating the underlying contributions to the illness in each individual, there is a select group of the top clinicians invited to a retreat each year in Northern California. My colleagues have described lively debates among the different sub-specialists attending about the possible underlying microbial, genetic, hormonal and oxidative stress causes and treatments.
CFIDS stands for Chronic Fatigue, Immune Dysfunction Syndrome. Some practitioners and organizations call what appears to be the same syndrome “ME/CFS”, or “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” I will use both terms.
In 1998, Bill H. developed painful neck spasms, and the only alternative that was given to him from a leading center for movement disorders was to kill off parts of the offending muscles with Botox injections every six months. He wanted to address the cause–not just the symptoms of his neurologic deterioration.
Instead he went through a two decade-long ordeal, during which he eventually discovered that he had an acquired and genetic immune deficiency, as well as auto-immunity with multiple systems damage, which are characteristic of what is called either Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), depending on the practitioner.
I have helped him organize and choose diagnostic and treatment options and practitioners.
I summarize his conventional, as well as alternative, healing experiences after his following current diagnostic and treatment overview:
A. Chronic Fatigue
Cause: Damaged mitochondria, which are the batteries of our cells. Damage caused by continued chronic inflammation from immune dysfunction and auto-immunity to mitochondrial components, as well as free radical damage to mitochondria. This free radical and mitochondrial damage was diagnosed with several echocardiograms showing Systolic Dysfunction (which occurs from a lack of energy (ATP) in the cell caused by an insufficient mitochondrial antioxidant capacity with excessive superoxide ion that damages the cell through the Peroxynitrite ion We have discriminated many other causes, both genetic (with abnormal SNP’s) and acquired, with chronic infection from multiple microbials, damage to his immune system (dysfunction in interferons, very low IgG levels, undetectable IgA levels in the gut, bone marrow damage with markedly reduced neutrophils, white blood cells, hemoglobin, hematocrit and platelets), an extremely high exposure to tricothecenes (one of the most dangerous mold mycotoxins), and exposures to many other toxins, resulting in multiple environmental allergies and sensitivities.
Treatments: See CFIDS: Increase Cell Energy and CFIDS: Immune Deficits and Gut
B. Immune Dysfunction: Bone Marrow, Lymph Nodes, Gut, etc.
Causes: As above, part genetic (which may have caused the low glutathione levels on testing), but also acquired from inadequate early treatment of multiple, non-cell wall microbes, as well as multiple toxin loads–With severe tricothecene mycotoxin exposure from REALTIME LABS. Also, “leaky gut,” with lack of sIgA to fight offending microbes in the GI tract, dysbiosis with presence of pathogenic gut bacteria and autonomic nerve damage which supplies gut, heart and other organ function.
Treatments: See: “CFIDS: Immune Deficits and Gut,” and CFIDS: A Roadmap”
Also, along left panel:
Detox: Mold and Mycotoxins
Detox: Intermittent Fasting
Also Bi-Annual High-Dose Vitamin A.
Causes: Repeated sub-clinical allergen inflammation affecting the pancreas, resulting in loss of secretion of lipase with malabsorption of fat. Autonomic damage results in stomach paresis (with lack of proper emptying), lack of proper stomach acid secretion, and bowel paresis with inability to empty bowels without supportive measures. Disrupted microbiome with auto-immunity to gut hormones, bowel dysbiosis, and leaky gut.
Treatments: See “CFIDS: Immune Deficits and Gut”, as well as “Detox: Liver” along left panel.
D. Hormone Dysregulation:
***Adrenal gland dysfunction with an undetectable AM Cortisol test as a youth resulting in difficulty with prolonged standing in one place and day-time sleepiness approaching “narcolepsy.” No treatment offered at that time because of fears of cortisol supplementation
***Low thyroid with low body temperature.
Treatment: See “CFIDS: Hormones.”
E. Brain and peripheral nerve damage:
SPECT with active inflammation in right and left basal ganglia, right insular cortex, anterior cingulate, right and left lateral prefrontal cortex ,and thalamo-limbic system, inflammation damage to frontal and parietal lobes, posterior medial cerebellar area, with scalloping changes indicating “toxic exposure” and flattening of the prefrontal cortex pole. CT with multiple ischemic areas throughout the brain white matter and marked atrophy changes. EMG with bilateral motor neuropathy with significant loss of motor units and increased recruitment pattern.
Treatment of not only the Immune, Gut and Hormonal deficits outlined above, but also the severe damage from ongoing Inflammation, or “Oxidative stress.” See: “CFIDS: Treat Oxidative Stress from Peroxynitrite”
My experience introduced me to both the strengths and weaknesses of both alternative and conventional treatments.
Aware of the power of spiritual and emotional healing on the body, I was helped by yoga, intense childhood conflict resolution, eye-movement therapy, and meditation–which opened up another dimension with which to cope with the pain. My experiences at Esalen, Harbin, with the Diamond Approach (especially Eneagram Training) with Jim Harter for a variety of spiritual practices and Greg Mayers for Meditation were also helpful.
The spasms increased in severity in 2000, after I had cleaned out a men’s bathroom filled with mold, and I required medication in order to sleep.
I worked with Dr William Rea, after I read of an artist who had all of her neck spasms resolve while detoxifying the pain contaminants under his care. He helped a great deal with the allergy and auto-immune aspects, as well as diagnostic help to understand all of the contributions to the Environmental contribution to CFIDS.
I gradually deteriorated and developed all of the symptoms typical of this disease such as severe fatigue, POTS, severe immune dysfunction with multiple systems damage from not only cell-wall deficient organisms, but also autoimmune damage to brain, peripheral nerves (especially my autonomic nervous system) and my bone marrow resulting in a very low WBC, hemoglobin, hematocrit, platelets, neutrophils, IgG and others. , was told by one doctor that she thought I was going to die, and another top doctor that stopped treating me because he was afraid my health was too fragile and I would die.
After I “crashed” in 2005 with a brief hospitalization, I underwent a six month outpatient daily treatment under the care of a very experienced doctor in Kansas City. She diagnosed Lyme, from a number of specialized tests, and I had daily intravenous treatment with antibiotics, anti-oxidants, as well as a phospholipid treatment. Because of deficiencies in my systems, she started me on T3, heparin, and cortisol and many supplements for my immune system. Unfortunately, she did not realize that my auto-immunity reacted to some of the treatments, and the three medications each could induce osteoporosis, which I only realized when I suffered severe incapacitating pain in my back while stepping into a shower. The bone scan showed severe osteoporosis with three compression fractures, and I left the clinic and worked with a variety of other practitioners.
Dr. Tennant helped with techniques to increase cell energy and use of “Rife-“type techniques
Dr. Cheney helped my understanding of the problem of an underlying cause of the lack of anti-oxidant enzymes, resulting in leakage of superoxide ion and the leaking of peroxynitrite. See “CFIDS: Peroxynitrite.” He used dynamic echocardiograms to demonstrate that my system was suffering from “oxygen toxicity” because of the lack of cellular-generated anti-oxidants.
The doctors of Functional Medicine and Jeff Bland helped with more understanding and treatments with nutrients.
Dr. Vodjani was helpful for his comprehensive testing that demonstrated the severe cytokine stimulation in my system and my low glutathione, among others.
Dr. Jaekle was helpful for use of antigen treatment for yeast problems, as well as education on care of the GI tract.
Dr. William Spurlock has an extensive understanding of all the possible contributions and manifestations of CFIDS, as well as IV and oral nutrients for treatments.