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What is Chronic Fatigue and Immune Dysfunction Syndrome?
Chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic
fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and by other names, is a
complex and debilitating chronic illness that affects the brain and multiple
body systems. This includes the immune, endocrine, gastrointestinal and central
nervous systems.
According to the CFS case definition published in the Dec. 15, 1994 issue of
the Annals of Internal Medicine, diagnosing CFIDS requires a thorough
medical history, physical and mental status examinations and laboratory tests
to identify underlying or contributing conditions that require treatment.
Chronic fatigue can be classified as Chronic Fatigue and Immune Dysfunction
Syndrome if the patient meets both the following criteria:
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Clinically evaluated, unexplained persistent or relapsing chronic fatigue that
is of new or definite onset (i.e., not lifelong) is not the result of ongoing
exertion, is not substantially alleviated by rest, and results in substantial
reduction in previous levels of occupational, educational, social or personal
activities.
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The concurrent occurrence of four or more of the following symptoms:
substantial impairment in short-term memory or concentration; sore throat;
tender lymph nodes; muscle pain; multi-joint pain without joint swelling or
redness; headaches of a new type, pattern or severity; unrefreshing sleep; and
post-exertional malaise lasting more than 24 hours. These symptoms must have
persisted or recurred during six or more consecutive months of illness and must
not have pre-dated the fatigue.
Can it be treated?
Treatment for CFIDS is intended primarily to relieve specific symptoms. One
third of the patients who develop CFIDS report resolution of symptoms over
time. Another one third cycle between periods of good health and wellness and
some gradually worsen. What is required is an integrative, step-wise approach.
Each patient requires an individualized protocol.
Is CFIDS the same thing as Fibromyalgia?
No, but patients can have both simultaneously.
What is Fibromyalgia?
The American College of Rheumatology 1990 Criteria for the Classification of
Fibromyalgia
To meet the diagnostic criteria, patients must have:
1. History of widespread pain for at least three months.
Definition. Pain is considered widespread when all it occurs in both the
right and left sides of the body, and both above and below the waist. In other
words there must be pain in all four quadrants of the body. In addition, axial
skeletal pain (cervical spine or anterior chest or thoracic spine or low back)
must be present. "Low back" pain is considered lower segment pain.
2. Pain in 11 of 18 tender point sites on digital palpation.
Definition. Pain, on digital palpation, must be present in at least 11
of the following 18 sites:
Occiput: Bilateral, at the suboccipital muscle insertions.
Low cervical: bilateral, at the anterior aspects of the
intertransverse spaces at C5-C7.
Trapezius: bilateral, at the midpoint of the upper border.
Supraspinatus: bilateral, at origins, above the scapula spine near the
medial border.
Second rib: bilateral, at he second costochondral junctions, just
lateral to the junctions on upper surfaces.
Lateral epicondyle: bilateral, 2 cm distal to the epicondyles.
Gluteal: bilateral, in upper outer quadrants of buttocks in anterior
fold of muscle.
Greater trochanter: bilateral, posterior to the trochanteric
prominence.
Knee: bilateral, at the medial fat pad proximal to the joint line.
A diagram illustrating the location of these tender points can be seen at:
http://www.nfra.net/Diagnost.htm
Digital palpation should be performed with an approximate force of 4 kg.
A tender point has to be painful at palpation, not just “tender”.
The presence of a second clinical disorder does not exclude the diagnosis of
fibromyalgia.
Briefly, how do you treat CFIDS?
With an integrated, step-wise approach to address:
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Gut dysbiosis/food allergies
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Sleep disorder--if the body can get adequate sleep, it may improve pain issues
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Immune dysfunction/Infections
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Endocrine disorders - thyroid, growth hormone, adrenal, sex hormone imbalances (treated with bio-identical hormones)
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Metabolic disturbances - blood volume depletion, mineral deficiency, especially
magnesium, acid-base imbalance, DNA and mitochondrial damage, antioxidant
depletion, mercury detoxification, brain protection and restoration, autonomic
nervous system imbalance, oxygen transport difficulty, adrenal insufficiency
and pain management.
- Toxic Foci – removal of toxins from the body
Depending on the current status of a patient in the step-wise protocol, we can
carefully progress through an individualized plan of treatment. As the body
begins to repair itself and heal, the next step is implemented. This allows
time to assess what is most beneficial in a partnership between physician and
patient.
Why do lab results ordered by my doctor often show no abnormalities?
Routine lab tests that measure blood count, blood sugar, kidney, liver function and cholesterol are often normal in CFIDS patients. These tests are too general to find functional defects in CFIDS patients. However, some abnormal patterns do emerge such as low sedimentation rate, low uric acid and low white cell count, as well as upregulated cholesterol levels.
What laboratory tests are helpful?
There are many specialty tests I order: a few of the most commonly helpful are:
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RNase L level - often upregulated indicating active viral infections
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Low NK (Natural Killer) cell count and function
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Abnormal Comprehensive Digestive Stool Analysis - indicating gut dysbiosis
and/or inflammation
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Chronic Viral Infections - HHV6, Cytomegalovirus, Mycoplasma, Chlamydia infections.
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24-hour urine Amino Acid analysis - can pinpoint specific vitamin, mineral and
protein deficiencies.
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Abnormal salivary melatonin level - often a CFIDS patient will not secrete
melatonin at midnight, but will secrete a quantity of melatonin at 6:00AM. This
inhibits sleep, and then creates difficulty in waking.
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Genetic screening - www.genovations.com
genetic panels for detoxification and Immune dysfunction. With this
information, I can pinpoint genetic predisposition to CFIDS and direct
phenotypic manipulation to shut off genes expressing inflammation, liver
toxicity problems, etc.
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ISAC panel - (Immune System Activation of Coagulation)
Hemex Labs
looks for hypercoagulation problems which
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allow pathogens to persist in the bloodstream
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interfere with O2/CO2 transport - and thus cause fatigue
and muscle pain.
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Testing for Human Growth Hormone deficiency
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Other hormone analysis: DHEA, Estrogen, Progesterone, Testosterone and Cortisol
imbalances.
Please keep in mind that treatment for each patient is individualized, based on
the results of a patient’s symptoms, physical exam and laboratory analysis.
Do some CFIDS specialists recommend shots?
Shots may be helpful; my staff carefully instructs each patient or caregiver in
proper intramuscular and/or subcutaneous techniques. Some of the most helpful injections may be:
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Magnesium + Taurine injections (Magnesium cream is also available)
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B12 (hydroxy form) (sublingual methyl tablets are also available)
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Glutathione (an oral form is also available)
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Nexavir - used to be Kutapressin (a transdermal gel is also available)
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Human Growth Hormone - very low dose
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Growth Factors
Does Imunovir (Isoprinosine) Work?
It is a powerful immune modulator that can be very helpful, although not
currently available in the U.S. It can be imported utilizing a correctly written
prescription. This is one of the safest, most cost effective and helpful drugs
at our disposal. Ongoing studies in Canada and Europe have proven this drug to
raise NK cell count and function and correct TH1/TH2 imbalances. It is a
non-specific antiviral compound.
Is there any recent research that holds promise for CFS and FM patients?
As a member of the IACFS, an international professional organization for clinicians and researchers who study CFIDS, I am able to follow current research in the field. I also follow the current literature on Fibromyalgia, and there are many research projects going on that are quite hopeful.
I participated in an extensive research study completed in 2007 that was sponsored by a major pharmaceutical company to test a new drug for treating Fibromyalgia.
Of particular interest to me is the work being done on hypercoagulation issues, neurotoxins, emerging infectious agents and using nutraceuticals to balance these issues. I am most impressed with the work of Jeffrey Bland, Ph.D., and his theories of how nutrition is related to gene expression, which in turn causes or reverses illness. I am convinced that the area Dr. Bland calls “Nutragenomics” holds great promise for all mankind in dealing with chronic illnesses. I truly believe if we can stop polluting the world and poisoning ourselves, we may be on the verge of eradication of many illnesses.
Dr. Paul Cheney’s work on cardiac issues in CFS, based initially on the research of Peckerman, is very important and illuminating. I await with much anticipation the publication of his research on these issues.
Chronic illness is often a result of genetic abnormalities and environmental toxins. There are scores of people dealing with these symptoms who can be particularly helped through detoxification techniques developed by Dr. Cowden. We have implemented these in the clinic using laser technology and have found that effective detoxification is essential in strengthening the body’s immune system and can speed up the healing process.
Does insurance pay for treatment, laboratory testing, and office visit?
Most insurance covers some of the above. Although our office is fee-for-service at the time of your appointment, we will file your insurance for you at no charge so that you may receive reimbursement. There may be additional costs for lab tests or procedures done outside the clinic. The cost of an initial visit is influenced by various factors such as the complexity of the illness and evaluation of disability issues. In addition, we can write a letter of appeal to your insurance carrier if they deny payment, which may help coverage benefits or help with disability issues.
What advice do you have for CFS and FM patients?
NEVER GIVE UP HOPE! I know that is easier said than done, but there is hope and there is help available for you to regain control of your life. Research is moving forward and as these conditions gain more national attention, more research will be funded to develop even more treatment options for patients.
Keep reading and educating yourself and your health care provider on the options available that have proven medical outcomes. Often physicians who do not specialize in this area of medicine, but are working hard to help their patients with FM/CFIDS, welcome information regarding these treatment options since they don’t have time to stay on top of the latest options that are helping other patients. The Internet has a wealth of information on it and resources for patients and health care professionals alike.
Next, know you are not alone. Right now it is estimated that here are over 12 million Americans suffering from these debilitating conditions and their stories of pain, exhaustion and loss of quality in their lives are similar. So while each patient has a unique presentation of these conditions, each experiences similar struggles.
And finally, keep searching for health care providers who “get it”. If you are being treated by a physician who does not recognize that this is a very real condition, find a new health care provider. And, if you are being treated by a provider and are not seeing a significant improvement over 6-12 months, or if your practitioner is not open to trying other treatments, find a new provider. If you suffer from depression, know that most likely you are not sick because you are depressed, you are depressed because you are sick.
These are very real conditions that can and will rob you of your life if you don’t get them under control. It is important that you take control of your health care choices and the path you follow as you work to overcome these overpowering diseases.
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