Discussion in 'Fibromyalgia Main Forum' started by butterfly99, Jul 20, 2006.
Im looking into a FMS clinic in Ca has anyone been to one?
Dr. Holtorf is in Torrance California. I have copied info from his website - warning, very long....
Kent Holtorf, M.D. is a sought after expert and pioneer in the field of chronic fatigue syndrome and fibromyalgia. His extensive experience and knowledge is evidenced by the over 3000 fibromyalgia and chronic fatigue patients he has successfully treated with unprecedented results. His medical practice focuses on these conditions as well as hypothyroidism, natural hormone replacement and optimization and the treatment of complex endocrine disorders. He is the medical director of the Fibromyalgia and Fatigue Centers www.fibroandfatigue.com, which is the first nationwide clinic specializing in the treatment of chronic fatigue and fibromyalgia and is currently writing a book on the topic.
“Mainstream” medicine is doing a very poor job at treating these diseases because standard laboratory test are usually normal, there is no simple treatment that works for all patients and they cannot be cured in the eight minute standard visit. Consequentially, millions of patients with chronic fatigue syndrome and fibromyalgia have gone without comprehensive treatments and have had to suffer for years with a poor quality of life. Even though these are complex diseases, the physiological causes underlying these conditions can usually be uncovered with specialty testing and then multi-faceted treatment protocols that address the numerous physiologic dysfunctions are successful. Having suffered with chronic fatigue syndrome himself, he is committed to reversing these devastating illnesses.
Please also see
www.fibroandfatigue.com for comprehensive up-to-date information
on CFIDS and Fibromyalgia
Currently we have Centers open in Los Angeles (Torrance), Amarillo, Atlanta, Cleveland, Dallas, Denver, Detroit, Ft. Worth, Houston, Las Vegas, Norwalk, Pittsburgh, Philadelphia, Salt Lake City and Seattle. We will be opening soon in Boston and Portland. Visit the website often as new Centers are constantly being added.
Call 310-375-2705 to schedule in Torrance. For all other locations or information on out of town packages, call toll free 1-866-443-4276.
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Definition of Chronic Fatigue Syndrome
1.Clinically evaluated, unexplained, persistent, or relapsing chronic fatigue that is of new or definite onset (has not been 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.
2. Concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
A. Self-reported impairment in short term memory
B. Sore throat
C. Tender cervical or axillary lymph nodes
D. Muscle pain
E. Multijoint pain without joint swelling or redness
F. Headaches of a new type, pattern, or severity
G. Unrefreshing sleep
H. Postexertional malaise lasting more that twenty-four hours
Problem with the definition is that it is a research definition and excludes many people with the syndrome.
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A history of widespread pain. The patient must be experiencing pain or achiness, steady or intermittent, for at least 3 months.At times, the pain must have been present:
A. On both sides of the body
B. Both above and below the waist
C. In the Mid-body-for example, in the neck, midchest, midback, or headache.
D. Pain on at least eleven of the eighteen tender points
Problem with the definition is that it is a research definition and excludes many people with the syndrome.
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Basic dysfunctions can be generalized to be characterized by:
Hormonal deficiencies (not picked up on standard blood tests)
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Multiple Chemical Sensitivity (MCS)
Sensitive to medications
Sensitivity to temperature or barometric changes
Intolerant to alcohol
Low blood pressure
Low grade fevers
Irritable Bowel Syndrome
Headaches (migraine and tension)
Autoimmune diseases (lupus, RA)
Restless Leg Syndrome
Low body temp
Carpal tunnel syndrome
Painful or irregular menstrual periods
Shortness of breath
Confusion with numbers, names, words etc.
Numbness or tingling
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Cycle of Dysfunction
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New Standard for the Treatment of Chronic Fatigue Syndrome and Fibromyalgia
New Standard for the Treatment of Chronic Fatigue Syndrome and Fibromyalgia
Chronic Fatigue Syndrome and Fibromyalgia are complex diseases that involve multisystem disturbances and abnormalities. Because of this complexity, these conditions have been poorly treated by the current medical system in this country.
These conditions do not lend themselvesto be successfullytr eated with the eight to fifteen minute visits that address only a portion of the wide spectrum of underlying dysfunctions. Through a more detailed evaluation, all identifiable etiologies' contributing to the symptomology may be appropriately addresseda, nd when multifaceted treatment is instituted that addresses the entire spectrum of these diseases, truly remarkable success and total cures can be obtained.
In general,s uccessfutlr eatment can be viewed in components. Treatment needs to be individuahzed, components may occur in different order and multiple components are often addresseds imultaneouslyb, ut these can be broken down as follows.
Component One: Stabilize the Patient
This is a componenitn which pain and sleep disturbances are addressed. This may include the use of sleep medications, pain medications and antidepressants. This is in general a temporary "stop gap" phase because as the treatment progresses and the underlying problems are addressed, the medications that "mask the symptoms" are no longer needed. Unfortunately, the overwhelming majority of patients are never brought past this stage by their doctors. This is because this component is the limit of training for most doctors, but it really should only be the first step.
Component Two: Mitochondrial Enhancement
This component is actually integrated throughout the treatment program and tapered as the patient returns to normal functioning. The mitochondria are the energy producers of the cells and are critical for normal functioning. But they are shown.to be poisoned in these conditions, leaving the cells starving for energy.
Many things can poison the mitochondria including hormonal deficiencies, toxins and infections. Mitochondria dysfunction may be the common denominator and underlying mechanism that explains the symptoms of CFIDS/FM. In addition to the treatments above to rid the body of the offending agents, specific nutrients can be given to jump start the mitochondria and get the body functioning again. These can also be administered orally or via an intravenous route.
Component Three: Balance the Hormones
There are a number of hormonal deficiencies with these conditions that must be addressed to assure successful treatment. Unfortunately, these hormonal deficiencies are often missed or poorly treated because doctors have come to rely on standard blood tests that require an intact pituitary and hypothalamus for diagnosis and dosing of hormone levels. There is, however, severe hypothalamic and pituitary dysfunctionw ith these conditions, making the standard blood tests inadequate. Some typical hormones functions, not just levels, that need to be evaluated include thyroid function, growth hormone, testosterone, aldosterone, cortisol, DHEA, pregnenolonee, stradiol, p ogesterone, among others. When they are properly treated and balanced, tremendous results can be achieved.
Component Four: Treat the lnfectious Components
There are multiple infections that either may be the cause of CFIDS/FM or contribute to the dysfunction. Because of the immune dysfunctions, there is often more than one infection that must be addressed. Potential pathogens include a variety of viruses such as Epstein Barr (EBV), Cytomegalovirus( CMV), Human Herpes Virus 6 (HHV6), Enteroviruses, such as Coxsackie, Echo, and Stealth virus. Bacterial infections include intracellular organisms such as Mycoplasma, Chlamydia pneumonia, Borrelia Burgdorferi (Lyme disease) and Ehrlichia. A number of yeasts such as Candida and parasites must also be evaluated. Infections with many of the above organisms will also further suppress the immunity, often resulting in further infections with other organisms.
Thus, many organisms must be evaluated and treated along with an assessmenat nd treatment of the immune system. If a poor immune system is not addressed, successful eradication of the organisms is not likely, even with the most potent treatments. Treatment may be administered with oral medications or via an intravenous route. A combination of IV and oral medication in conjunction with immune modulation is extremely powerful.
Component Five: Address Unique Etiologies
There are a number of problems that must be addressed in select patients. For instance, some individuals have a coagulation defect that is set off by a chronic infection. This results in the laying down of a fibrin coating on the lumen of the vessel causing impaired oxygen and nutrient transfer. This can result in fatigue, muscle aches and "brain fog". If suspected, diagnosis requires specialized testing. If not treated, not only are the cells starved for oxygen and nutrients, but it is very difficult to eradicate any infection because they will "hide" in the fibrin coating. Also, if the organism is one that produces neurotoxins, this must also be addressed. These substances can remain in the body and continue to cause symptoms long after the organism that produced them are gone. Special testing and protocols must be done to rid the body of these tiny toxins.
Component Six: Maintenance
Here is where the patient is weaned to just a few core medications and supplements to remain symptom free and maintain their health. Significant recovery or complete resolution of symptoms is the rule rather than the exception when a multifaceted treatment plan is instituted.
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Multi-faceted Treatment Approach is Best
Chronic Fatigue syndrome (CFS) and Fibromyalgia (FM) are illnesses that often coexists and affect millions of Americans. Symptoms vary amongst individuals and commonly include severe fatigue, sleep disturbances, cognitive problems, commonly called brain fog, muscle pain and multiple infections. Unfortunately, many individuals and physicians continue to deny that these syndromes are legitimate diseases. The medical literature is, however, very clear that these are legitimate diseases and individuals with these syndromes have measurable hypothalamic, pituitary, immune and coagulation dysfunction. These abnormalities then result in a cascade of further abnormalities, in which stress plays a role. The pituitary and hypothalamic dysfunction results in multiple hormonal deficiencies that are often not detected with standard blood tests, and autonomic dysfunction, including neurally mediated hypotension. The immune dysfunction, which includes natural killer cell dysfunction, results in opportunistic infections and yeast overgrowth, making the symptoms worse. Recent studies have shown that the coagulation dysfunction is usually initiated by a viral infection and has genetic predisposition. This abnormal coagulation results in increased blood viscosity (slugging) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and cellular hypoxia, resulting in fatigue, and decreased cognition (brain fog). Neurotransmitter abnormalities and macro and micro nutrient deficiencies have also been shown to occur with these disorders.
Gulf War Syndrome, which is almost identical to CFS and FM, was found to have a parallel cause. The cause was determined to be from multiple vaccinations under stressful conditions in susceptible individuals. These vaccines, which are viral mimics, resulted in the same coagulation cascade and the deposition of fibrin monomers, resulting in the same tissue hypoxia that occurs in FM and CFS. These multiple injections are being discontinued by the armed forces.
Current research suggests that many triggers can initiate a cascade of events, causing the hypothalamic, pituitary, immune and coagulation dysfunction. The most common initiating cause is a viral or bacterial infection, which is very commonly Epstein Bar Virus (EBV), Cytomegalovirus (CMV), HHV6, mycoplasma, Chlamydia pneumonia or Lyme’s disease. These are found in 80% of CFS and FM patients. Many people with these syndromes can pinpoint the start of their disease to a viral infection that never got better. Also, stress seems to be a contributing factor. Effective treatment, with 80 to 90 percent of individuals achieving significant clinical benefits, can be achieved by simultaneously treating the above problems that an individual is found to have. The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals because of the pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3 is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions. Adrenal insufficiency and growth hormone deficiency are also very common with these disorders, and supplementation with these hormones can often have profound effects. As with thyroid testing, these deficiencies are, unfortunately, usually not detected with the standard screen blood tests and require more specific testing.
When an individual is found to have one of the viruses discussed above, these can be treated with resulting improvement in symptoms. It can require a combination of medications, supplements and sometimes intravenous treatments to eradicate some of the persistent infections.
Although a concept that is sometimes uncomfortable and foreign to traditional medical styles of thinking, the need for multiple interventions is effective when an illness affects a critical control center (such as the hypothalamus), which impacts the multiple systems noted above. Unfortunately, there is not a single treatment that reverses hypothalamic dysfunction directly. Thus, this situation is different from illnesses that affect a single target organ and which can be treated with a single intervention. For example, pituitary dysfunction itself often requires treatment with several hormones. This effect is multiplied in hypothalamic dysfunction, which affects several critical systems in addition to the pituitary gland. An integrated treatment approach based on simultaneously treating the above problems is significantly beneficial in CFS and FMS. Individuals with these devastating syndromes can “get their lives back” despite the fact that they were previously told, “There is nothing that can be done,” or “It is all in your head.”
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Are All CFS/FM Patients Low Thyroid?
Are All Chronic Fatigue Syndrome/Fibromyalgia Patients Low Thyroid?
There is mounting evidence that hypothyroidism is present in the majority of and possibly all chronic fatigue and fibromyalgia (CFS/FM) patients. The problem is that standard blood testing that consists of TSH, T4 and T3 does not detect it. Thus, many CFS/FM patients are erroneously told over and over that their thyroid levels are fine. TSH is secreted by the pituitary in the brain, telling the thyroid to secrete T4, which is not the active thyroid hormone. T4 must then be converted in the body to the active thyroid hormone T3. When T4 and T3 levels drop, the TSH should increase indicating hypothyroidism. This is the standard way to diagnose hypothyroidism. There are, however, many things that result in hypothyroidism but are not diagnosed using the standard TSH and T4 and T3 testing. This method misses thyroid problems with CFS/FM patients 90% of the time.
First of all, there is clearly pituitary dysfunction in these diseases from a variety of causes, including viruses, bacteria, stress, yeast, inflammation, toxins, pesticides, plastics and mitochondria dysfunction. This results in low normal TSH levels along with low normal T4 and T3 levels. Very few doctors understand the significance of this and incorrectly state that the thyroid is fine.
In addition, most chronic fatigue syndrome and fibromyalgia patients do not adequately convert T4 to the active T3, resulting in low levels of active thyroid hormone and suffer from low thyroid despite having a normal TSH. Also, there is another problem in that T4 cannot only be converted to T3, but it can also be converted to reverse T3, which is inactive and blocks the thyroid receptor. Very few practicing physicians consider this, but it is a major problem. There is an evolutionary enzyme that increases the T4 to reverse T3 in times of stress and illness. This worked well for our ancestors because in times of famine it allowed those who had this enzyme to survive. But in our modern society, reverse T3 works against us causing fatigue, difficulty losing weight, brain fog, muscle aches and all the other symptoms of hypothyroidism. Reverse T3 can be increased with chronic illnesses such as CFS/FM, yo-yo dieting (often responsible for the quick weight gain after losing weight), stress, heavy metals and infections commonly present in CFS/FM. Low thyroid not only results in undesirable symptoms, but it also increases the risk of heart disease and cancer. When more extensive testing is done, these patients are so relieved to be shown on paper that their thyroid is truly low and that they can expect to be feeling better soon. There are only a few labs that can accurately measure reverse T3. It is difficult for labs to do and many labs will erroneously indicate normal or low levels of reverse T3. Some doctors that have ordered reverse T3 on patients have found it not to be useful because they are not getting accurate results or they don’t know how to interpret the results.
In addition, there is also a thyroid resistance syndrome found in these patients, meaning that there may be thyroid in the blood but there is no thyroid effect. This has been discounted in the past, but more and more evidence is surfacing proving that this is indeed a significant problem with these conditions.
The combination of factors present in CFS/FM, including pituitary dysfunction, high reverse T3, and thyroid resistance, results in most, if not all, CFS/FM patients having inadequate thyroid effect. T4 preparations such as Synthroid and Levoxyl rarely work and Armour thyroid, a pig glandular product, is somewhat better, but definitely not adequate for most patients. The treating physician must know when to use a T4/T3 combination or straight T3. T3 works the best for many of these patients, but Cytomel, a very short acting T3 available at normal pharmacies, is also a poor choice because the varying blood levels cause problems. Compounded timed release T3 is usually the best treatment. However, to achieve significant improvement, the treating physician must be very knowledgeable about T3 and must realize that when on T3, standard bloods blood test will lead one to dose incorrectly and not obtain significant benefits. I have trained many doctors on how to use thyroid with CFS/FM patients and they all cannot believe how effective it is when used properly. This includes doctors who previously felt that they were thyroid experts and had been using thyroid with CFS/FM for a long time. Ultimately, it is the expertise and dosing of the T3 or T4/T3 combinations and the makeup of the medications that determines the patient outcome and success of treatment.
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Neurotoxins - A cause of Chronic Fatigue Syndrome/Fibromyalgia
There is evidence that a subset of CFIDS and FM patients are suffering from chronic neurotoxin exposure. Research by K. Hudnell and R. Shomaker has shown that different infections can produce neurotoxins, resulting in symptoms that can not be differentiated from CFIDS/FM or be the cause of these syndromes. Symptoms include poor memory, fatigue, headache, rash, burning skin, eye irritation cough, light sensitivity, muscle aches, diarrhea, poor concentration, shortness of breath, abdominal pain and/or dizziness.
Neurotoxin production has been clearly demonstrated to be the result of Estuary-Associated Syndrome as discussed in the reference below, but numerous bacteria, viruses and yeast can also produce neurotoxins. These include Epstein bar virus (EBV), cytomegalovirus (CMV), HHV6, Borrelia burgdorferi (lyme’s disease), mycoplasma, enteroviruses, Chlamydia pneumonia, Candida and other molds.
The body tries to rid itself of the neurotoxins by excreting them into the intestines via the bile. This however does not work because these small compounds are reabsorbed from the GI tract and continue to poison the system. This is termed entero-hepatic circulation. Neurotoxins can affect all parts of the body and are diagnoses with a special visual test. Once diagnosed, the neurotoxins can be eliminate with a special regimen consisting of Questran, mega dose vitamin C and an alkalinizing diet along with eradication of the toxin producing infection.
I have found that there are a percentage of patients that have documented CFIDS or FM actually do suffer form neurotoxin poisoning. These patients can be cured in a matter of weeks with eradication of the infection and elimination of the neurotoxins.
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Is Abnormal Mitochondria Function at the Heart of Chronic Fatigue Syndrome and Fibromyalgia?
A number of studies have demonstrated that there is mitochondrial dysfunction in chronic fatigue syndrome and fibromyalgia patients. The mitochondria are the energy factories for the cells where sugar is burned and energy is produced in the form of ATP (adenosine-tri-phosphate). When the mitochondria are not working properly, the cells and tissues of the body are starved for energy. This abnormality may be the common endpoint for all the dysfunctions present in CFIDS and fibromyalgia. No sugar is burned resulting in weight gain, and no energy is produced, resulting in fatigue, muscle pain, poor concentration, gastrointestinal dysfunction, headaches, etc. A Great Britain Study demonstrated that 70 percent of CFIDS patients have ultrascructurally abnormal mitochondria. Mitochondria can be poisoned by numerous substances, including environmental toxins, pesticides, chronic bacterial, viral and fungal infections, neurotoxins and nutritional and hormone deficiencies.
Mitochondrial function can be boosted by removing the offending agent when it can be identified, such as infection, toxin, or hormone deficiency and/or by supplementing with mitochondria nutritional support. There are a number of supplements that can be effective. These include L-Carnitine, NADH, alpha-lipoic acid, malic acid, coenzyme Q10, adenosine mono-phosphate, riboflavin, selenium, vitamin k3 and magnesium. For instance a study published in the journal of Neuropsychobiology demonstrated that supplementation with L-carnitine for 2 months resulted in a significant improvement in symptoms. A study in the Annals of Allergy, Asthma and Immunology demonstrated that supplementation with NADH for one month resulted in significant improvement and numerous studies have shown improvement with magnesium, although minimal. In order to achieve optimal results one must both remove the offending agent and concurrently boost with mitochondria with nutritional support. This can result in drastic improvements in CFIDS and fibromyalgia symptoms.
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Molecular Dysfunction in CFIDS/Fibromyalgia being Revealed
While chronic fatigue syndrome and fibromyalgia have been recognized for many years, their underlying cause has been poorly understood. One important and interesting aspect of these conditions is the unusual susceptibility of individuals to a variety of chronic infections. These infections include viruses such as Epstein-Barr (EBV), HHV-6, enteroviruses and Cytomegolvirus (CMV), bacteria such as Mycoplasma and Chlamydia Pneumonia and yeast such as Candida. This unusual susceptibility to infections is suggestive of impaired immunity, but no single, consistent immune defect is observed although a number of deficiencies have been reported.
Recent advances in the study of intracellular communication are providing key insights into the immunological defect that may be underlying chronic fatigue syndrome and fibromyalgia. A number of research groups have reported an abnormality of an enzyme called human leukocyte elastase (HLE). This abnormal elastase enzyme degrades two important proteins required for normal immune function. One protein is called STAT1 and the other one called RNase-L, which are required for the white cells to utilize interferon and respond to the types of infections seen with these conditions. Consequentially, CFIDS and FM patients are not able to eradicate chronic infections like those without these conditions. For instance, it is not uncommon for patients to be able to point to a viral infection that they never fully recovered from. In normal individuals, the virus “runs its course” and is cleared in days to weeks. With chronic fatigue syndrome and fibromyalgia, the body is not able to completely rid the body of the virus. This results in a chronic low grade infection, causing fatigue, muscle pain and the other symptoms commonly seen in these conditions. The viruses often have intermittent replication, resulting in the varying nature and periodic worsening of symptoms often seen with these conditions.
A number of methods have already been developed to suppress this abnormal elastase enzyme. We currently use a number of them in the Centers, which include both natural and prescription medications.
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Hypercoagulable State and
Chronic Fatigue Syndrome and Fibromyalgia
New research is indicating that many chronic fatigue syndrome (CFS) and fibromyalgia (FMS) patients are in a state of low level activation of the coagulation system and treatment of this coagulation activation can result in a complete or partial resolution of symptoms. Studies have found that approximately 80% of CFS and FM patients have this low level activation of the clotting system. This low level activation does not produce a blood clot, but rather an intermediate substance called a soluble fibrin monomer (SFM). This coats the inside of the blood vessel and limits oxygen and nutrient flow into the cells, resulting in the symptoms of CFS and FMS including fatigue, muscle pain, brain fog and sleep disturbances. It has been found that 40% of CFS/FMS patients have a genetic predisposition for the production of too much SFM, while 50% have a genetic predisposition that limits the breakdown of the SFM. Both conditions result in excessive SFM coating of the blood vessels.
This genetic predisposition can be set into action by a number of factors, including trauma, exposure to heavy metals, toxins pesticides and molds and viral, yeast and bacterial infections, including, Epstein Bar Virus (EBV), Cytomegalovirus (CMV), HHV6, Parvovirus, Enterovirus, Mycoplasma, Chlamydia Pneumonia and Lyme’s disease. The SFM coating not only limits the oxygen and nutrient flow, but it also provides a place for the virus, yeast and bacterial to “hide” and escape destruction by the immune system. Thus, it is very difficult for CFS/FMS patients to rid the body of these infections when compared to healthy individuals.
Diagnosis is made by the use of a specialized test called an ISAC (Immune System Activation of Clotting) panel, which measures platelet activation, soluble fibrin monomer, fibrinogen, prothrombin fragment 1 +2 and thrombin/antithrombin complexes. Treatment includes low dose heparin and substances to break up the fibrin as well as elimination of the initiating agent, whether it is a virus, bacteria, yeast or toxin. Intervention can be from several weeks to a number of months. We utilize this treatment at the Fibromyalgia and Fatigue Centers and have seen some dramatic improvements and sometimes complete resolution of symptoms.
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Lyme Disease and Link to...
Lyme Disease and Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue.
Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called “the great imitators” because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.
Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as ‘brain fog’. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer’s disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.
Patients with chronic Lyme disease often complain of ‘strange’ or ‘weird’ symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.
Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).
If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.
There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).
Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).
To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.
Lyme Disease Hits Home
Thursday, August 18, 2005
Lyme Disease Hits Home
By Stacy Troiano
Initially discovered 30 years ago in Lyme, Connecticut, Lyme disease has not only continued to affect lives, but it has become a widespread epidemic in the northeast almost without residents knowing. Stories about West Nile virus and encephalitis are taking over front pages everywhere, while Lyme disease flies under the radar. Doctors and citizens alike need to become more aware of this rampant, debilitating illness.
Lyme disease is reported worldwide and throughout the United States, but the states of New York, Massachusetts and Connecticut account for the majority of the cases. It is a bacterial infection caused by a spirochete form of bacteria known as Borrelia burgdorferi, and it is transmitted to animals and man through the bite of infected ticks. The tick usually responsible for transmitting the disease in northeastern United States is the black leg tTick, also known as the deer tick, however, there is growing evidence that there may be other vectors of transmission besides this isolated type. A tick bite is painless, so most victims do not know they've been bitten, which allows the tick to remain attached long enough to spread its infection.
In about 50 percent of Lyme disease cases, a characteristic bull's eye rash appears around the site of the tick bite after a few days, but it's very important to understand that even if a rash does not appear, it does not mean there is no Lyme infection; the rash is just one symptom. Other common symptoms of the beginning stages of Lyme disease include flu-like symptoms, headache, sore throat, stiff neck, fever, muscle aches, fatigue and general malaise. If left untreated, later stages of Lyme disease can cause complications such as arthritis, meningitis, facial palsy, heart abnormalities and other neurological symptoms. Heart, eye, respiratory and gastrointestinal problems can also develop.
"There is not a person who I've met in Durham that doesn't either have Lyme disease or know someone closely who has it," said Sandra Ulbrich of Durham, who has been infected with Lyme disease for 16 years. I had a chance to talk to Sandra about her journey through the disease, and I was totally taken by her story. In 1989, Sandra began feeling ill, and her records read like a classic Lyme patient with throbbing headaches, fatigue, swollen glands and problems with her right shoulder and right hip. At that point doctors medicated her, but they didn't know what it was.
Two years later, Sandra was not only uncured, but she was feeling progressively worse with severe fever added to her growing list of symptoms. She was put on different medications, but doctors still could not tell what it was. She began to have pain all over her body which kept getting worse until it became diffuse achiness everywhere. Some doctors ventured that she suffered from depression or chronic fatigue, but Sandra was not buying it. In 1992, she tested positive for Lyme disease, but the "specialist" at Yale told her she was not positive enough and insisted she didn't have it.
As time went on for Sandra, the infection continued to bring out more and more symptoms including intestinal problems and intense dizziness. She began feeling what she described as lightning bolt shockwaves going into her brain, and she saw a neurologist who also was stumped.
The late stages of Lyme disease wreak havoc on the brain. Sandra went in for a brain biopsy about one and a half years ago, which found a demyelinating lesion in her right parietal lobe. Doctors still were avoiding a Lyme disease diagnosis. Some doctors thought it was cancer, others said maybe she had a stroke, and still others thought it could be multiple sclerosis because of bacterial similarities. Sandra had done her reading on the subject, and with help from her sister who is a doctor herself, she was nearly certain that the other diagnoses were incorrect, and the cause was actually Lyme disease that had now manifested itself in the brain.
The hyperfusion and encapsulated lesion in her right parietal lobe would require brain surgery for Sandra, and at the time she entered the hospital she could not raise a finger or a toe on her left side; it was completely dead. "This was devastating to me. I'm a trained classical pianist. Music is a very big part of my life, and now I couldn't use my left hand," she said. Sandra's new doctor wanted to see all of her records, including any tests given for Lyme disease, from years ago when the symptoms began. The doctor who had performed the test and had deemed Sandra "not positive enough" claimed that he no longer had records from that long ago. Sandra was not satisfied. She persisted and called the doctor's secretary who informed Sandra that she did indeed find her records, including the positive Lyme test. After about 12 years, Sandra was finally diagnosed correctly.
"I wanted to talk about Lyme disease not for myself because the damage is done, but I want people, especially in this area, to be aware of what an epidemic it's become and what it can do to a person," Sandra said. Connecticut has one of the highest infection rates for Lyme disease in the country, and misdiagnosis and proper treatment are clearly a problem. "Any kind of fever, any kind of aches and pains, any stiff neck or headaches, do not let doctors tell you its depression or chronic fatigue or anything else. Investigate Lyme. Get on some antibiotics." Sandra also stressed that the most important thing to remember if you are possibly infected with Lyme is that the tests are not always reliable. Clinical symptoms are the only way to truly tell whether or not the disease is there.
"I was very lucky to have such amazing support from my family. I just want to use my experience to make people aware. That's the most important thing. Just be aware that it does happen, and in this area almost everything carries it. There's no such thing as being too cautious," Sandra said.
There's no way to be completely impervious to a tick bite, and not all deer ticks carry Lyme, but there are precautions to take that will greatly lessen your chances of being infected. Always inspect yourself for ticks whenever you have been outside. Wearing lightly colored clothing will make it easy to see any ticks that may have attached themselves. Wash and dry clothes to kill any remaining ticks. Clear brush from any yard area and keep grassy areas mown. And most of all, wear insect repellent, preferably with Deet. If a tick is found on the body, immediately remove it. To safely remove a tick, grasp the mouth of the tick with tweezers as close as possible to the attachment site, being careful not to squeeze or puncture the body of the tick, which may contain infectious fluids. More information on Lyme disease can be found through the International Lyme and Associated Diseases Society (ILADS).
After being able to talk extensively with Sandra Ulbrich, I found myself very engrossed in her story. Here is a woman who had suffered from nearly every single symptom of Lyme disease, and is now doing everything she can to inform other people. I started reading many articles, researching anything I could find about Lyme disease, and telling a number of people about what an amazing person I had met in Sandra; I couldn't stop thinking about her story. When I was leaving her house after we had talked, she told me that if she could affect even one person and make them become more conscious of the widespread problem of Lyme disease around here, then she would be happy. I hope I am the first of many.
Irritable Bowel Syndrome (IBS)
Irritable Bowel Syndrome and CFIDS/Fibromyalgia
Recent studies demonstrate the majority of chronic fatigue syndrome and fibromyalgia patients suffer from bowel dysfunction, with the majority being irritable bowel syndrome (IBS). IBS can be significantly debilitating problem in its own right with CFIDS and Fibromyalgia. It is a gastrointestinal disorder characterized by bloating, abdominal pain, diarrhea and/or constipation and the absence of any identifiable physical, laboratory or radiological abnormalities indicative of organic disease.
The newest criteria (Rome II) for IBS include at least 12 weeks (need not be consecutive) in the preceding 12 months of abdominal discomfort that is accompanied by at least two of the following three symptoms: the abdominal discomfort or pain is (a) relieved with defection, (b) associated with a change in frequency of defecation, and/or (c) associated with a change in the form or appearance of the stool. There are a number of medications that can decrease the symptoms of IBS, but there also are a number of factors that are associated with IBS and when these are identified and treated, the results can be significant. These include food allergies, gluten and wheat sensitivity and small intestine bacterial overgrowth (SIBO).
A number of studies have documented a connection between yeast and bacterial overgrowth of the small intestine (SIBO) and IBS. This especially appears to be the case with CFIDS and fibromyalgia patients, occurring in 70-90 percent of these patients. The small bowel should be free of bacteria and yeast, but when it is not, the food stuffs are utilized by these bacteria resulting in gas, inflammation, poor absorption, diarrhea and/or constipation. The dysfunctional immunity and frequent diminished stomach acid and digestive enzymes often present (including the use of medications designed to decrease stomach acid) in CFIDS and fibromyalgia make these patients more prone to SIBO and subsequently IBS.
There are tests to determine if SIBO is present, including the hydrogen breath test. This involves giving the carbohydrate lactulose and measuring the amount of hydrogen expired by the breath. If certain carbohydrates, such as lactulose, are digested by intestinal bacteria instead of the small intestine or stomach, hydrogen gas is produced and can be measured from the expired breath. Samples are taken every 15 minutes for 2 hours. Due to the fact that SIBO is so common with CFIDS and fibromyalgia, that it can be safety eradicated and that significant improvement or elimination of IBS symptoms can be achieved with treatment, the time and expense of the test is not generally necessary. Eradication of the SIBO can be instituted without undergoing the test.
In addition to eradicating the SIBO, one must also address the gastrointestinal dysfunctions present in order to obtain long term improvement. If the predisposing factors are not addressed, the bacteria and yeast will again populate the small bowel and symptoms will return.
Immune Support Interview
Interview of Kent Holtorf, M.D.,
on Treating Chronic Fatigue Syndrome & Fibromyalgia
ImmuneSupport: In your article on the effective treatment of Chronic Fatigue Syndrome and fibromyalgia*, you state that “individuals with these syndromes have measurable hypothalamic, pituitary, immune and coagulation dysfunction. These abnormalities then result in a cascade of further abnormalities, in which stress plays a role.” Could you discuss in as much detail as possible how you approach treating the following problems in CFS and FM patients:
Immune dysfunction: If a complete immune panel is done on Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) patients, almost all have immune dysfunction, which often includes poor natural killer cell function. These cells are very important in killing viruses and bacteria. It is very difficult to eradicate chronic infections when these cells are not functioning well. Antibiotics and antivirals do not work well and are often infective if the immune system is not stimulated as well. You are never able to kill all the infectious agents unless the body is able to clean up the residual left by the antibiotic or antiviral. This is very similar to the situation with AIDS patients.
There are a number of methods to do this. What I use depends on the infection present, but in general I like Transfer Factor, Pro Boost, Maitake Mushroom, whey protein, astragalus, NK Stim, and beta-glucan combinations with natural and pharmaceutical antivirals or antibiotics. Growth Hormone, thyroid and cortisol are also very good immune enhancers. Yes, I said cortisol - low doses of cortisol for people who have adrenal insufficiency act as an immune enhancer. Large doses are immune suppressors. Your body normally increases cortisol in times of infection. Oxidative therapies, discussed below, can be very powerful. I customize the specific treatment for the patient.
Coagulation problems: This is diagnosed with a specialized laboratory test that includes soluble fibrin monomer, fragment 1 +2, and thrombin/antithrombin complex. Defects are typically treated with heparin to stop the excessive production of soluble fibrin monomers and vascular digestive enzymes to help clean up the fibrin already laid down.
Low thyroid: As discussed earlier, CFS and FM patients will often have a number of thyroid abnormalities including a low free T3, a high reverse T3, and a low TSH. These abnormal ratios are not usually discovered using the standard laboratory interpretation of hypothyroidism. When CFS and FM patients are treated with thyroid, they are almost always under-dosed because their pituitary dysfunction results in their TSH becoming quickly suppressed, which normally indicates too much thyroid. Because these patients have pituitary dysfunction, one must forget about the TSH and not treat based on this parameter. These patients can also have a thyroid resistance syndrome. This has not been a well-accepted concept by general mainstream medicine and many refuse to believe it exists because the exact mechanism has not been elucidated, but this a real phenomenon.
In fact, in this week’s International Journal of Medical Research, a major peer reviewed medical journal, a patient was described that required 10 times the normal dose of thyroid intravenously before her symptoms would resolve. This resistance usually improves as the patient gets better and they subsequently need less thyroid.
Adrenal insufficiency: To diagnose, I typically use symptoms and a combination of blood sugar, free cortisol, and HgA1C%. Again, one must have a high clinical suspicion and not just think in terms of normal and abnormal. These normal levels are determined for healthy individuals, not the chronically ill, so the cortisol levels should be higher with this illness. 24-hour urine and saliva tests can be done, but these can also result in false positive and false negative results. Some doctors who treat these disorders have reported that cortisol is not helpful; this is totally opposite to my experience. I have found this adrenal hormone to be very helpful.
Growth Hormone deficiency: Many CFS and FM patients are low in growth hormone. This hormone is produced in the pituitary so it is expected with these illnesses. Treatment can sometimes make a tremendous impact but because of the cost, it is not used on most patients. IGF-1 is the best indication for growth hormone levels.
ImmuneSupport: Once you’ve determined which problems a CFS or FM patient has, do you prescribe both traditional and alternative treatments, or do you focus on a single method at a time?
Dr. Holtorf: One must use both traditional and so-called alternative treatments. In order to treat these diseases adequately, I use many treatments simultaneously. If one treatment were used at a time it would take many years before the patient feels better. I use many treatments at the same time, but I remove a treatment every two weeks when the patient is feeling good for a period of time.
ImmuneSupport: Please tell us a little bit about the Hormone and Longevity Medical Center where you practice.
Dr. Holtorf: I started the Hormone and Longevity Center to concentrate on the treatment of hormone deficiencies with hormonal optimization. Eighty percent of our practice is for patients complaining of fatigue, with CFS and FM probably being the biggest part of the practice. This was also the case when I ran the Thyroid Optimization Center a number of years ago.
ImmuneSupport: What are the biggest challenges you face with treating CFS and FM patients?
Dr. Holtorf: Although we have good success with CFS and FM, these are challenging cases that require doctors to spend significant time with the patient. It cannot be accomplished with seven-minute office visits.
ImmuneSupport: What are the biggest successes you’ve experienced with treating CFS and FM?
Dr. Holtorf: Many of these patients are very sick and have given up. It is so gratifying to get these patients back to having a life. They are just so grateful. Many have been unable to work and/or have been on disability and now [following treatment] are happy, functional and productive.
ImmuneSupport: Are you working on any promising new treatments at this time – either through research or through a trial and error process with your patients?
Dr. Holtorf: I am working on new treatments every day in practice. I have recently found that oxidative therapy can be immensely effective. This involves the administration of intravenous hydrogen peroxide. This is a very safe treatment that is backed by decades of studies. It is popular in Europe for a number of disease states and conditions and has been advocated by the International Oxidative Medicine Association in this country. Hydrogen peroxide is naturally produced in our bodies and has wide ranging effects. It activates the immune system, kills viruses, bacteria, and parasites, increases oxygen delivery to the cells, and activates the mitochondria (energy factory of the cell). This appears to be a perfect treatment for CFS and FM patients and I am very excited about the results with this therapy, especially when used in conjunction with the therapies described above. I am going to launch a study involving this combination therapy.
I have been asked by companies to conduct drug trials for FDA approval, but I have been declining to do so because, at this time, I do not feel they are worthwhile, even though I am sure they will eventually get approval. The drugs seem to be somewhat effective but generally unspectacular.
ImmuneSupport: What are the most exciting developments you’ve seen recently in treatment options for CFS and FM?
Dr. Holtorf: Recent developments are taking place in a stepwise manner, but I do not believe it will be through the so-called mainstream medicine one-drug cures. I think these are very treatable conditions and advances will only continue to improve treatment. I do believe, however, that [incidences of] CFS and FM will significantly increase in number and at some point will be considered an epidemic because they are very poorly treated through the standard health care delivery system.
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Immune Support Interview #2
The Fibromyalgia & Fatigue Centers:
Bringing Patients Effective Treatment Across the US
An interview with Mr. Robert S. Baurys, CEO and Dr. Kent Holtorf, Chief Medical Officer of the Fibromyalgia & Fatigue Centers, Inc.
ImmuneSupport.com: Please talk about how and when the Fibromyalgia & Fatigue Center was conceived, who was involved in establishing it, and what makes it unique.
Baurys: I first came down with Fibromyalgia five years ago, and like so many patients it took over a year and a half, many doctors, lots of tests and a lot of wrong guesses before I was properly diagnosed.
But even then I still didn’t have any answers as to how to get my life back to normal. Having a strong background in health care I knew I needed to educate myself on this condition if I was ever going to find the answer to how to control it. And I also knew at that point, that if I ever did find treatments that would allow me to live a normal life again, I would do everything in my power to make it accessible to the millions of people all over the country who have FM and CFIDS.
After a lot of research and time spent talking to doctors who thought they knew what to do to make it bearable, I realized that frequently I knew more than the doctors did and no one really had a good idea of what to do. Until I found Dr. Holtorf. Kent was practicing in Torrance, CA and he specialized in FM and CFIDS patients. He himself has been struggling with CFIDS for 20 years and has spent much of that time researching and understanding exactly all the things that happen to the body when these conditions are present. He has treated over 3,500 patients and has remarkable outcomes with the majority of his patients able to lead normal productive and active lives once again. His approach made sense and so I became a patient. That was about a year ago.
Within a few months I was feeling great and asked Kent if we could teach other physicians all the complexities of the conditions and train them how to treat them to achieve the same incredible outcomes he had been having in his own practice. His answer was yes, and so the Fibromyalgia & Fatigue Centers (FFC) were established.
I have about 20 years experience in business development and part of that time was spent creating and establishing wound care centers all over the country. So, with Kent and my long time business partner Sue Hrim, who is also a registered nurse, we began outlining the prototype for the Centers and assembling our management team. Sue and I have been fortunate to have worked with very talented people throughout our careers, and when we asked some of these people to come and work with us to establish centers all over the country, they said yes. That was in November 2003.
Dr. Holtorf: What makes us unique are a couple of things. First, we really do understand the conditions we are treating. With both the CEO and the Chief Medical Officer living with these conditions every day, we have a first hand understanding of what it is like for our patients to do normal every day tasks most people take for granted. We also have a unique integrated approach to treating the patient which involves looking in-depth at everything that is going on with that person and treating the causes of the symptoms, not just the symptoms that are presenting during their appointments. We only use medications to ease symptoms, not mask them. And we really take our time with each patient.
Since the Center physician’s job is exclusively treating patients. He or she can take the time needed to really get to know the whole patient and create an individualized care plan for them. And finally, while there are a few physicians in the country that have pretty good outcomes in this field, they do not have the know how to replicate what they are doing in their practice to be able to reach out to patients nationwide and still maintain the quality of the outcomes. This combination of a unique clinical algorithm and the business savvy to expand nationwide is what really set us apart.
ImmuneSupport.com: Do you have a standard approach or program for treating CFS and FM patients? There is some information on your website http://www.fibroandfatigue.com regarding the "proven 6 step approach" that is used at your centers. Please describe the 6 steps.
Dr. Holtorf: As you may know, FM and CFIDS present differently in each patient. And even in each patient, the symptoms may vary in degree of severity from day to day, so there is no “one size fits all” treatment for these conditions. The treatment protocol is individualized for each patient, but we always follow our unique “six step approach” to determine what is wrong with each patient and then customize their treatment.
This integrated program addresses the underlying etiologies that cause those symptoms with the long term goal being elimination and/or significant reduction leading to a long term maintenance plan. Since treatment needs to be individualized, phases may occur in different orders and multiple phases are often done simultaneously, but simply put these phases can be broken down as follows:
stabilize the patient by addressing pain and sleep disturbances;
promote energy by enhancing the powerhouse of each cell, the mitochondria;
balance hormones by evaluating hypothalamus and pituitary function;
enhance immunity and treat underlying viral infections;
address unique etiologies such as neurotoxins and coagulation defects;
provide each patient with an individual maintenance program with the minimally necessary medications and supplements to assure absence of symptoms.
With over 3,550 patients treated using this method, and the majority of them having a significant increase in energy and decrease in pain we know that when implementing the full six-step approach, significant recovery or complete resolution of symptoms is the rule rather than the exception.
ImmuneSupport.com: Are your treatments expensive compared to traditional doctor's office visits? Do you accept insurance?
Baurys: When you think about the fact that the standard office visit gives you 8-10 minutes at most with the physician, and the patient usually pays a $20 co-payment per visit and the insurance company pays the physician another $45-50 per visit that makes the payment rate of $65-70 per 10 minute visit or $390- $420 per hour visit, if you were allowed to have such a thing in today’s reimbursement driven society.
At the FFC the patient spends between 60-90 minutes with the physician on their first two visits and the rate for those visits is $325. And then there is the additional time spent with the nurse and/or physician should treatments be given during those initial visits. After that each follow-up visit is $165 and usually lasts about 30 minutes with the doctor. So comparatively we are a bargain when you look at the time spent with the physician and the total cost and more importantly the outcome.
One of the reasons we can do what we do the way we do it and achieve the outcomes we do is the fact that we don’t accept insurance. If we took insurance payments we would be relegated to fall into the insurance model of the 10 minute office visit, since that is all the companies are willing to pay for. There is no way a physician can adequately get to know a patient and their condition in 10 minutes or less, and work out an individualized treatment protocol to get them on the road to wellness. It is just impossible.
We do however provide our patients with the necessary documentation should they choose to submit their claim for potential reimbursement. Most PPO insurance plans will reimburse the patient for out-of-network visits and that reimbursement rate usually ranges anywhere from 30% - 80% of the cost of the visit. So when you think about getting reimbursed for even 50% of the visit that means the out of pocket cost to the patient is only $160 for a 60-90 minute visit.
When you realize the average patient is probably seeing multiple doctors regularly for different symptoms caused by FM and CFIDS, then you know they probably spend that much every four to six weeks in co-pays alone and without improvement in their condition. To make it easier for our patients, we do have Quest Labs in each of our centers to do the blood draws and most of the lab work, and Quest will bill the patients’ insurance carrier directly.
ImmuneSupport.com: What do you believe are the biggest benefits of the Fibromyalgia & Fatigue Centers for patients seeking effective treatment?
Dr. Holtorf: The biggest benefits are the same things that make us different. Our patients are seen by health care providers who really understand their struggle and the challenges that living with FM and CFIDS brings to every day life. They ask questions and really get to the root of the problems and then aggressively work to get it under control. We are conveniently located and expanding all over the country so patients don’t have to travel great distances to get help. And we are affordable since treatment needs decrease as the condition improves and our goal is eventually for our patients to be able to live an active life with just minimal long term treatments to keep their FM AND CFIDS under control. But the most important benefit is our patients improve and regain quality to their lives, and after all, that is what it is all about.
ImmuneSupport.com: How many locations do you have so far, and what are your plans for adding additional locations in the future? How do you choose locations?
Baurys: We currently have Centers in Torrance, Dallas, Cleveland and Denver and we are opening in Atlanta, Houston, Long Island, Minneapolis, Detroit and Seattle by the end of 2004. Our ultimate goal is 30 Centers by the middle of 2006 and we are well on our way.
City selection is based on a variety of things. Our first FFC locations were selected to offer a reasonable option for patients in all regions of the country. We generally pick cities with high populations, major airports and easy access around the local area. Our first goal is to make sure we have FFCs covering all regions of the country and after that in 2005 we will fill in with additional Centers in each region. We also look at where there are hot spots for FM and CFIDS. Weather plays a big part in severity of symptoms and so we look at where weather conditions make it worse and we will have a heavier concentration of Centers in those areas.
ImmuneSupport.com: What can you offer patients with more recalcitrant cases of FM and/or CFS?
Dr. Holtorf: The majority of our patients are the tougher cases. We get referrals from other physicians who can’t or don’t know what to do to help their patients feel better. We get patients who have been struggling for 10-15 years, or even longer in some cases, and who have just about given up hope of ever feeling somewhat normal again.
When we review their medical history it sounds so familiar - years of struggle to figure out what is wrong, wrong diagnoses, at least 8-10 different physicians visited, hopes dashed and finally resignation that their life will be filled with pain and fatigue until the end. These patients are no different than those we see that have not yet been diagnosed or are newly diagnosed; the only difference is that the latter has not, in most likelihood, lost hope.
So to all our patients we offer hope, hope that you can realize optimal results if we work together to get your body back in balance and correct the problems that are causing your pain and fatigue. We also offer our proven method to help you regain control of this condition that has taken control of your life. We know that mild cases or more established and complex cases can all benefit from our approach and treatments.
ImmuneSupport.com: How many physicians are staffed at each location, and are patients able to choose a doctor - or several doctors if needed, to work with them on their treatment?
Baurys: Currently, each FFC is staffed with one physician who is the primary health care provider along with the RN Case Manager, who oversees the coordination of the patients care plan. Since getting to know the patient and their condition in such detail is the hallmark of our approach and critical to the success of developing the treatment plan for each patient, we felt it was important to have one highly trained physician responsible for the care of the patients in each location. The “partnership in healing” relationship that develops between the patient and the physician is one of the keys to positive outcomes.
We do however work with other healthcare providers outside our center in a cooperative collaboration for the care of the patient. If a patient is currently undergoing some adjunctive therapies that are proving to be beneficial to their condition, we will work with those health care providers to ensure a seamless integration of that therapy into the treatment plan. Occasionally, we will even recommend some therapies that require specialized treatment by other health care providers (i.e., sleep studies to pinpoint more complex sleep issues, etc.) and we will help coordinate that care. We also keep referring physicians abreast of patient progress if so requested.
ImmuneSupport.com: Do you think your centers work best for patients who take a more active role in their care and healing?
Baurys: Patients need to know they have a choice to live a full and productive life. It takes some significant level of commitment to get control of your life again but it can be done with the help of experienced and caring people. There are several steps to assuming a controlled pathway, all of which are critical to the outcome:
You must decide that you truly want control of your life again. This is important as it becomes very easy to get inwardly focused on controlling the pain and minimizing the exposure instead of living your life. You need to decide if you really want control of your life again.
You must select your support team carefully. As you have undoubtedly already heard, some physicians still think this is a mental condition, not physically based. Thankfully, the overwhelming research has shown most intelligent practitioners that FM and CFIDS in fact have some distinct physical abnormalities associated with them.
You must commit to controlling your destiny. Each day, the battle must be fought. You must stay committed to owning control of your life, on your terms, to effectively manage your conditions.
You must enjoy your life again. The strongest medicine in the world is the ability to be happy. Attaining the state of contentment is a powerful elixir that puts everything else into a manageable context.
Patients who take this control and come to our centers are successful.
Dr. Holtorf: Bob is right. It is all about attitude in combination with the right medical approach. We think we offer patients who understand this, the best chance for leading a happy, productive and active life.
ImmuneSupport.com: Anything else our readers should know about the Fibromyalgia & Fatigue Centers?
Baurys: To our patients who are reading this, thank you for making our beginnings so successful and for encouraging us to grow and reach out to more people suffering as we have in the past. Thank you for trusting us with your wellness and for putting your faith in our proven medical protocols. Your smiles, hugs and shared stories of the active lives you are now leading are what motivate us to keep moving forward.
And to those readers who are not patients, please know there is hope and help out there so you too can begin to really live the life you deserve. Never give up hope and if in anyway we can help, please don’t hesitate to contact us at 1-866-443-4276.
Dr. Holtorf: I only have one more thing to add. When you are told that “it is all in your head”, or “you need a psychiatrist”, or “your lab tests all came back normal”, or “there is nothing that can be done for the pain or fatigue” - keep searching for answers! You are not crazy. You do not need a psychiatrist. Your body is telling you something is wrong and it is more accurate than some lab tests can be. And you can do something about the pain and fatigue. Both Bob and I and all our patients are living proof of that.
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Story Done on Patient Ellen K
Article Done on Patient Ellen K.
Tired of feeling tired and sick? Ellen was! After all, it was 24 years of going from doctor to doctor; vacillating between hopefulness and helplessness; and often times spending more than half of her annual income in search of the “cure” for a condition she was consistently told she can’t cure - only control. Now 47 years old, Ellen has spent almost half her life searching out and consulting with the Fibromyalgia “gurus” and experimenting with new treatments. Occasionally, she would find temporary relief from the debilitating symptoms, but eventually she would return to the steady downward spiral that had become her “normal”.
The “experts” in the field were not able to help her significantly enough to warrant the costs and the emotional wear and tear associated with having, and then losing, hope. Shortly after graduating with her degree in music, Ellen, a talented young flutist, was suddenly afflicted with Fibromyalgia. At first no one could properly diagnosis the condition. After all it was the early 1980’s and it really wasn’t even a recognized disease yet. Multiple specialists, most of whom were too intimidated by a condition they couldn’t correct to even tell her they had no idea what was wrong or how to fix it, ultimately told her it was all in her head - she was crazy. Depression overcame her. Suicide seemed like the best way to end the pain that wouldn’t even allow her to play her beloved instrument. For Ellen there was no light at the end of the tunnel for a long, long time.
Sound familiar? Most patients struggling with Fibromyalgia and Chronic Fatigue Syndrome have a similar story. Details may not be exactly the same. They may have to give up their love for a sport or their passion for dancing the night away, or even the hopes of one day having a family. But the basic elements are the same. Each patient has lost their life as they once knew it to be and they have lost the hopes for what that life might become. Goals have gone from becoming successful in their chosen profession to successfully getting out of bed each day and managing the simple life tasks of showering and dressing. Major decisions about relationships, career moves, and task prioritizations are replaced with daily major decisions about whether they should put in a load of laundry or wash the dishes left in the sink from dinner the night before. They know they will not have the strength or be pain-free long enough to do both, so the choice is tough.
For Ellen, her search and struggle ended a little over a year ago. Thanks to a strong Buddhist faith and determination she worked through the myriad of information available to patients. She followed her instincts about what was going on with her body and eventually came to find one doctor who did understand and who was willing to work with her so that she had choices and could control her Fibromyalgia. Dr. Kent Holtorf, Chief Medical Officer of the Fibromyalgia and Fatigue Centers, Inc. has been working with Ellen to take control of the disease that forever changed the course of her life. Her energy levels over the past year have gone from 1-3 on a scale of 10 to solid and steady 6-8’s. Her pain has significantly decreased, going from 8 – 10 on a scale of 10 to now consistently rated between 0-2, a 90% improvement. Overall, her progress has been remarkable after such a long struggle to find the solutions. She credits Dr. Holtorf and the Center’s philosophy of a patient centric approach to identify and treat the underlying causes of her symptoms with helping her get back to a life she is happy to be living, not dreading. As Ellen continues to progress, she has the opportunity to potentially lead a symptom free life. Her hope is contagious, her smile genuine as she shares the joy of living life to it’s fullest, not having to settle for whatever her body would allow that minute or that hour or that day.
Ellen’s story is one of loss, but as she says it is also one of gain. She has gotten so much from having gone through the struggle that she can be ok with having had to go through it. A stronger faith, a caring husband and compassionate doctor who truly understands and supports her needs have all been benefits stemming from her struggle. She urges all patients to follow their hearts and never give up hope, there really is light at the end of the tunnel, no matter how long that tunnel may seem.
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Cardiac dysfunction and EBV/CMV
Cardiac dysfunction resulting in CFS due to EBV and/or CMV infection
There are a number of studies indicating that an Epstein-Barr (EBV) and/or cytomegalovirus infection of the heart muscle can decreases the heart’s ability to pump and may be the cause of CFS in a number of patients. A rapid resting heart rate can be a sign that this is a problem. Studies also indicate that when the EBV and CMV infections are eradicated, there is significant or complete resolution of the symptoms of CFS. I have found many CFS/FM patients to be infected with active EBV and/or CMV infections, especially those with rapid heart rates. When these infections are eradicated, the patient can have tremendous improvement and his or her heart rate declines. Many patients are told that they do have these infections but that they are not treatable. These are, however, very treatable infections. It is important to note that just treating EBV, without treating the CMV co-infection, does not result in improvement. These were some of the first studies documenting abnormal heart function in patients with CFS.
Lerner AM, Lawrie C, Dworkin HJ. Repetitively negative changing T-waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome (left ventricular dysfunction in a cohort). Chest. 1993;104:1417-1421.
Dworkin HJ, Lawrie C, Bohdiewicz P and Lerner AM. Abnormal left ventricular myocardial dynamics in eleven patients with the chronic fatigue syndrome. Clinical Nuclear Medicine 1994;19:675-677.
Lerner AM, Goldstein J, Chang CH et al. Cardiac involvement in patients with chronic fatigue syndrome as documented with Holter and biopsy data in Birmingham, Michigan, 1991-1993. Infectious Diseases in Clinical Practice 1997;6:327-33.
These are some of the studies demonstrating that the abnormal heart function is due to EBV and/or CMV infection and has nothing to do coronary heart disease.
Lerner AM, Zervos M, Dworkin HJ, Chang, CH and O'Neill W. A unified theory of the cause of chronic fatigue syndrome. Infectious Diseases in Clinical Practice 1997;6:230-243.
Lerner AM. Editorial response: microbial persistence and idiopathic dilated cardiomyopathy. Clinical Infectious Diseases. 1999;29:526-7.
These are some of the studies demonstrating that eradication of the EBV and CMV infection results in significant improvement in heart function and resolution of the symptoms of CFS.
Lerner AM, Zervos M and Dworkin HJ et al. New cardiomyopathy: A pilot study of intravenous ganciclovir in a subset of the chronic fatigue syndrome. Infectious Diseases In Clinical Practice 1997;6:110-117.
Lerner AM, Zervos M and Chang CH et al. A small, randomized, placebo-controlled trial of the use of antiviral therapy for patients with chronic fatigue syndrome. Clinical Infectious Diseases. 2001;32:1657-58.
Lerner AM, Beqaj SH, and Deeter RG et al. A six-month trial of valacyclovir in the Epstein-Barr virus subset of chronic fatigue syndrome: improvement in left ventricular function. Drugs of Today. 2002;38:549-561.
Lerner AM, Beqaj SH, Deeter RG and Fitzgerald JT. IgM serum antibodies to human cytomegalovirus nonstructural gene products p52 and CM2 (UL44 and UL57) are uniquely present in a subset of patients with chronic fatigue syndrome. In Vivo. 2002;16:153-160.
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The studies below demonstrate that thyroid resistance is a significant problem in chronic fatigue syndrome and fibromyalgia. Many doctors don’t believe it is a true dysfunction even though it is becoming well documented. The Los Angeles Times even did a story on the problem of a fire retardant, which is band in every other country except the United States, building up in people’s bodies and blocking the effect of thyroid. This is a major problem for most chronic fatigue syndrome and fibromyalgia patients as well as being a problem for the population in general; it is, however, much worse in CFS and fibromyalgia. Thyroid resistance is basically a condition in which the thyroid in the blood has less of an effect than is normal. Documented causes of thyroid resistance includes viruses, bacteria, yeast, toxins, plastics, fire retardants, pesticides and reverse T3 to name a few.
When a doctor “checks your thyroid” he or she is actually checking thyroid hormone levels. What is really the goal is not to know how much thyroid is in the blood, but instead, what the thyroid effect a person is getting. The problem is that there could be normal thyroid levels, but because there is thyroid resistance, there is poor thyroid effect. There is no standard blood test, but those very familiar with this condition can usually recognize it with extensive thyroid panels. Treatment can be done by eliminating the cause, which can infection or toxin, or overcoming the resistance by giving higher doses of thyroid and watching the effect. High dose inositol can sometimes be beneficial, but it is best to remove the cause of the resistance. A possible screening question to check if your potential doctor is an expert in chronic fatigue syndrome and fibromyalgia is to ask if he or she treats thyroid resistance.
A metabolic basis for fibromyalgia and its related disorders: The possible role of resistance to thyroid hormone. Med Hypotheses 2003-7-31 61(2) 182-9
Effectiveness and safety of T3 (triiodothyronine) therapy for euthyroid fibromyalgia: a double-blind placebo-controlled response-driven crossover study. Clinical Bulletin of Myofascial Therapy, 2(2/3):31-58, 1997
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Adrenal Function in Chronic Fatigue Syndrome and Fibromyalgia
The study below demonstrates, as others have, that there is an altered hypothalamic-pituitary-adrenal axis in chronic fatigue syndrome and fibromyalgia. This means that there is low adrenal function that is not picked up by standard blood tests by most doctors. The reason is that the overwhelming majority of doctors look for the pituitary’s response to low hormones to make the diagnosis because this is the way that was taught in medical school. Unfortunately, this does not work with these conditions and results in an incorrect interpretation and diagnosis. This is true of many hormones in chronic fatigue syndrome and fibromyalgia, including thyroid, cortisol, estrogen, progesterone, testosterone, growth hormone and aldosterone, to name a few.
While this study demonstrates that low dose cortisol supplementation was beneficial for some, as a single treatment it did not work for many. Poor adrenal function is present in significant numbers of chronic fatigue syndrome and fibromyalgia patients, but if, however, only the adrenal deficiency is treated without treating the other deficiencies, there will be disappointing results, as in this study. It must be given in combination with the other necessary hormones. If low adrenal function is missed, however, it can mean the difference between treatment success and failure.
Hypothalamo-Pituitary-Adrenal Axis Dysfunction in Chronic Fatigue Syndrome, and the Effects of Low-Dose Hydrocortisone Therapy. The Journal of Clinical Endocrinology & Metabolism Vol. 86, No. 8 3545-3554 the other necessary hormones. If low adrenal function is missed, however, it can mean the difference between treatment success and failure.
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NK Cell Function
Every FMS/CFS Patient should know both their NKC Number and Activity
The study below indicated that there is an increased risk of cancer in patients with widespread muscle pain. This is likely due to these individuals having low natural killer cell function and/or number. I have found that over half of chronic fatigue and fibromyalgia patients have low natural killer cell numbers or activity. The function of the natural killer cells (NKC) is to kill viruses, intracellular bacteria and cancer. They roam throughout the body in search of infected or cancerous cells to destroy. If the natural killer cells are low in number (NKC number) or poorly functioning (NKC activity), there is a diminished ability to fight infection and also to kill cancer cells in the body, resulting in the inability to eradicate chronic infections and an increased risk for all types of cancer. Every fibromyalgia and chronic fatigue syndrome patient should know both their NKC number and activity. There are a number of specific treatments that can be done to dramatically improve natural killer cell number and activity, with resultant increased ability to rid the body of the infectious components and to reverse the increased risk for cancer.
Association of widespread body pain with an increased risk of cancer and reduced cancer survival: a prospective, population-based study. Arthritis Rheum 2003 Jun;48(6):1686-92
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Multifaceted Treatment Approach
Multifaceted Treatment Approach
The study below was a ground breaking study that demonstrated that there are multiple physiologic abnormalities in CFS/FM and that effective treatment requires a multifaceted approach, which is foreign to traditional medical thinking. It was criticized by some, however, because there was no placebo group. Dr. Teitelbaum subsequently did a double-blind placebo controlled trial.
J Teitelbaum, B. Bird. Effective treatment of CFIDS and Fibromyalgia The Journal of Musculoskeletal Pain Volume 3, Issue 4 (1995)
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Multifaceted Treatment Approach #2
Multifaceted Treatment Approach #2
This double blind placebo control study confirmed his previous study by demonstrating that there are varying physiologic abnormalities with chronic fatigue syndrome and fibromyalgia, including disordered sleep, hormonal deficiencies, immunologic changes, nutritional deficiencies, autonomic dysfunction and chronic infections, and that effective treatment of chronic fatigue syndrome requires a comprehensive integrative approach. This is still difficult to grasp by many traditional physicians who are still looking for the “silver bullet” approach and continue to focus on only one area of abnormality that they are comfortable treating. These protocols served as a basis, but knowledge has been evolving rapidly, allowing for more sophisticated and expanded treatment paradigms.
Teitelbaum J.*1, Bird B., Greenfield R.*1, Weiss A.*1, Muenz L.*2, Gould L.*3 Effective treatment of CFIDS and Fibromyalgia. The Journal of Chronic Fatigue Syndrome, Vol. 8(2) 2001
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The study below indicates that medications call acetylcholinesterase inhibitors can improve the symptoms of chronic fatigue syndrome and fibromyalgia. This medication is used to treat Alzheimer’s disease and increases acetylcholine in the central nervous system. After 8 weeks of treatment it was shown to significantly improve sleep, fatigue, muscle pain, and dizziness. This is another medication that can be included in the arsenal of medications and can be used on an individualized basis with a comprehensive approach in the treatment of chronic fatigue syndrome and fibromyalgia.
Trial of a selective acetylcholinesterase inhibitor, galanthamine hydrobromide, in the treatment of chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome 1996; 2(2/3): 35-54.
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The case studies below demonstrated that pyridostigmine to be beneficial in chronic fatigue syndrome and fibromyalgia. While this was case reports of only 3 patients, I have also found pyridostigmine to be helpful in fatigue in weakness in some patients. It does seem to be more helpful in patients that are positive for EBV. This is an indication that this virus may somehow block or inhibit the acetylcholine function at the neuromuscular junction in some patients, resulting muscle weakness and fatigue.
Efficacy of a half dose of oral pyridostigmine in the treatment of chronic fatigue syndrome: three case reports.
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The Used of Intravenous Lidocaine
The Use Of Intravenous Lidocaine For The Treatment of Fibromyalgia
Robert J. Mendez, DO, Thomas J. Moran, DO, William L. Little, DO, Mark J. Trentalage, MD and Robert R. Johnson, MD
This prospective, randomized, double-blind, placebo-controlled trial examined the efficacy of intravenous lidocaine in the treatment of fibromyalgia. Patients rated their pain scores prior to treatment or placebo infusion. The treatment (or placebo) was repeated 2 weeks later along with a report of pain scores after the second treatment and again 2 weeks and 6 weeks after the last treatment. Patients receiving the lidocaine infusion reported significantly improved pain scores 2 weeks after last infusion. The reduced pain scores lasted for approximately 4 weeks after last infusion and returned to baseline approximately 6 weeks after last infusion.
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Thank you, Amy, for posting this. Even though it is long, it is- to me- right on the mark!! This article basically mimics the FFC discussions.
I have been going and have not yet seen progress, but Amy, for the first time in my life, I believe that I am on the right track. Progress will take time and I am willing to wait! I see small changes and am grateful, but I have EBV, HHV6, c. pneumoniae, mycoplasma, and yeast- all of which is discussed in the article.
I never would have known this had I not gone to the FFC. Even though it is expensive- I am doing it. The key is to follow their directions. The other tip is to take all pills very slowly- work your way up- don't just take everything at once. I made that mistake and was throwing up for 3 days and continued to be sick for 5 more days.
what kind of meds or herbs do they have u on. have a peacful night
I am taking 4500 mg valtrex (for the ebv)- hhv6 was 10- right on the border. Leuko-stim, artimisinin, mitomax, powercell, wellbutrin. I also take the hormones and for thyroid.
..in Beverly Hills, CA, has an FM Rehab Clinic that is very good. I spent a few weeks there in '96, and while it didn't "cure" me, it did turn things around significantly.
I would highly recommend it.
- julie (is free!)
When your soul is bleedin'
what you're really needin'
is the kindness of strangers.. - Radney Foster
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