Our treatment approach

Comprehensive Treatment For Chronic Fatigue, Fibromyalgia & Autoimmune Disease.

Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS) and Autoimmune disease are treatable conditions. The most effective treatment protocols address six areas that have been shown to directly influence chronic fatigue and pain: sleep quality, hormone deficiency, opportunistic infections, nutritional deficiency, exercise, and stress level. By treating these areas concomitantly we hope to achieve improvement in a short period of time, however, patients should not expect immediate relief and it is realistic to anticipate 3 - 6 months of treatment before significant remission occurs. We endorse the treatment approach used by Dr. Jacob Teitelbaum (author of From Fatigued To Fantastic). The following is a brief introduction to treating sleep, hormones, infections, nutrition, exercise and stress:

1.) Stress: Reducing stress has undeniable long-term health benefits, especially for FM patients who experience flare ups with increased stress. Brain imaging research indicates that pain signals can be processed in different portions of the brain. Fibromyalgia patients tend to process pain in areas that are different from controls (PMID 16933135). When pain is processed in centers associated with having little control, the pain is more intense than it is when processing pain in a area associated with feelings of control. This means one’s pain will hurt more if they feel like they have little control over it. For more information on this relationship, go to Medline and index PMID 16082231. We work with John Leonard, Ph.D. who teaches people a simple and enjoyable technique to modulate pain signals, giving people power and control over their pain. For more about Dr. Leonard go to http://www.neurobehavioralprograms.com. He generally sees patients just a few times and most patients are delighted with the results.

2.) Hormones: “Dysregulation” of the hypothalamic-pituitary adrenal and thyroid axis is not a small problem. Our study of the alterations in pituitary function lead us to believe that the pituitary changes are physiologically adapted for survival and can be triggered by infection. This is not a random dysregulation, but a pattern of changes that can be compensated for and reversed to some degree. Many patients report improved cognitive function and decreased pain when their hormone levels are normalized with supplemental thyroid T3, oxytocin, and androgen cream as indicated by their blood work. Normalizing the rT3/fT3 ratio can have a profound effect on neurotransmitter synthesis, mitochondrial function, pituitary function and immune function. Improving endogenous nitric oxide production with hormones and nutrition helps to reduce musculoskeletal pain and improve circulation. Naltrexone (PMID 11862370) and angiotensin receptor blockers (PMID 17514587) have been shown to normalize HPA axis function at low doses.

3.) Infections: Opportunistic infections are those that capitalize on any opportunity to infect. Genetic mutations in methylation enzymes will diminish immune function, and give infections a green light. The infections we most commonly encounter in our patients are those that have been documented by CFS/FM researchers (Stratton, Nicolson, Peterson, Montoya, etc.). It appears that it is rarely a single organism and usually a combination of opportunistic infections that produce chronic illness. These infections all have the capacity to live inside of a white blood cell (WBC), which is an impressive feat. Once inside the host’s WBC’s, these infections modulate cellular metabolism and create an environment that that favors additional infection. Impaired WBC and mitochondrial function provides an opportunity for infectious agents to multiply. Bacterial signals, such as endotoxin and heat shock protein, disrupt metabolism leading to a depletion of Vitamin D receptors, and an increased clearance of essential nutrients needed to fight infection. There are infection opposing nutrients that we want to insure our patients are taking regularly. Antimicrobial medication can be helpful, but our preference is begin with daily infrared sauna (fever), infection opposing nutrients, low dose naltrexone, methylation support and more because the die-off from these measures alone can be significant. Once the patient is feeling stronger, antimicrobial agents can be introduced if the blood work and clinical setting supports it the need for it. Below is a brief synopsis of infections that we feel are worth investigating and treating:

a.) Viral Infections: Human Herpes Virus 6 & 7 (HHV 6, HHV 7). Herpes virus infections are common (chicken pox, Ebstein-Barr Virus, Cytomegaly virus) and once infected, humans carry these viruses in a dormant form for the rest of their lives. Most people are infected with HHV 6 and HHV 7 as children and it is one of the many flu-like illnesses that children endure. When these infections come out of dormancy in an adult it can cause chronic fatigue, flu-like symptoms and fever. Antibody tests are not a great measure of relapse, but Dr. Montoya at Stanford has found that patients with the highest titers tend to respond best to antiviral medication. PCR tests (which amplify DNA) are positive when the virus is actively replicating in the blood, but these do not appear to be very sensitive. HHV-6A is the strain of HHV-6 that is most associated with chronic fatigue and there is preliminary evidence that 12 infusions of Vistide can induce remission. A draw back to this approach is that Vistide costs $900 per infusion and relapses are frequent. Another approach is to use oral antiviral medication. Valtrex costs approximately $300 per month and works for many patients who require approximately 5 months of treatment. Dr. Montoya has been using Valcyte, which costs $2,500 per month and has a worrisome side effect profile that requires careful monitoring.

b.) Bacterial Infections: There is a growing number of studies finding Mycoplasma and Chlamydia pneumoniae antibodies and DNA in the blood of patients with FM, CFS, Gulf War Syndrome, MS, Asthma, Chronic Bronchitis, Chronic Sinusitis and RA. Chlamydia pneumoniae appears to contribute to atherosclerosis, interstitial cystitis and scaring skin lesions known as pyoderma gangrenosa. Dr. Stratton at Vanderbilt Medical Center has published a variety of articles linking Chlamydia pneumoniae to a variety of chronic diseases. It is interesting that he has documented the presence of Chlamydia pneumoniae DNA in 14/17 bladder biopsies from persons suffering from interstitial cystitis and other FM researchers (Clauw et. al. 1997) have confirmed a link between FM and interstitial cystitis. Chlamydia pneumoniae is commonly encountered and is a resilient opportunist with 3 forms in its life cycle allowing it to evade single agent antibiotic regimens. Treatment for Chlamydia pneumoniae requires months of treatment (similar to TB). Learn more about Chlamydia pneumoniae at: Cpnhelp.org Staying ahead on the clearing of the endotoxin released when bacteria are killed by using endotoxin lowering agents is very helpful.

c.) Fungal/Mold Colonization: This a controversial field of study in medicine and a complex topic. In brief, researchers at Mayo Clinic devised a new fungal culture technique and found that essentially all people, healthy and ill, have 2-3 different strains of mold living in their sinuses. Colonization may involve other mucosal surfaces, such as the lungs and intestines. Symptoms can develop when eosinophils (one of our white blood cells) are activated against mold. The allergic reactions can take a number of different forms from the classic type I reaction (runny nose, scratchy eyes, asthma), to type III hypersensitivity reactions which causes immune complex formation (a source of autoimmune reactions such as vasculitis) and serum sickness. The serum sickness reaction can develop 10 - 20 hours after ingesting food that contains mold proteins if the person is sensitized to that mold. For example chocolate, bread malts, and sodas all contain Aspergillus mold protein, but it is difficult for most people to link these foods to their “flare-ups” because the type 3 hypersensitivity reaction may take half a day to occur. Mold colonization and sensitization can be addressed by treating the sinuses with antifungal sprays, and treating the intestines with antifungal pills that are not absorbed into the blood stream. Minimizing dietary exposure to mold spores is often helpful. Insuring that one’s home environment is not a source mold is important. Mold counts are highest during the rainy season and many illnesses flare during this time. If your symptoms are worse in these months, try to recall if you were ever exposed to high levels of mold in a water-damaged home, or work environment. The syndrome referred to as Allergic Fungal Sinusitis links the development of allergies to foods, pollens and chemicals with fungal colonization of the sinus. These allergies lessen when fungal colonization is treated. Blood testing for IgG levels to mold and foods are helpful and Mayo Clinic has the only reliable fungal culture technique available. Another useful test is the serum eosinophil cationic protein (ECP) level, which increases as eosinophils are activated by mold and parasites. ECP levels can be followed as treatment proceeds to document response and influence the doses of antifungal medication.

d.) Parasites: Stool culture using Great Smokies Lab is the best way to document a parasitic infection. Local hospital labs are generally not as sensitive and false negative results are common.

4.) Nutrition: Nutritional deficiencies are common in people with chronic stress and illness. One of our immediate goals is to normalize nitric oxide metabolism, which dramatically reduces pain because nitric oxide has analgesic properties and because nitric oxide improves blood flow to muscle and the nervous system. See the end of the Fibromyalgia Handbook (the first book in our curriculum) which lists all of Dr. Teitelbaum’s treatments. His Energy Powder contains most of the nutrients people need to replenish their precursors to nitric oxide in a single scoop of powder. There are many helpful supplements available, but the following are ideal to begin with:

Omega 3 oils: We recommend two brands, Nordic Naturals or Eskimo 3. Taking high doses can diminish depression, reduce swelling and decrease pain. Start with the flavored pills and graduate to the flavored liquid if you would like to try higher doses. There are two major components of omega 3 oils, DHA and EPA. DHA facilitates brain function and is mildly stimulating, while EPA reduces swelling and has a calming effect. Increasing one’s dose too rapidly can be associated with diarrhea. The ability to tolerate omega 3 oils increases with time. Therapeutic dose is between 3 - 5 grams daily and maximum response for rheumatoid arthritis comes at 3 months, while cognitive benefits can be seen within a few days.

Acetyl-L-Carnitine: The acetyl form provides the most rapid response. Acetyl-L-carnitine is expensive, but it is associated with weight loss by improving fat metabolism and increases exercise endurance. Take 500 mg twice daily for the first few months. You can find inexpensive carnitine at:http://www.botanicchoice.com

Coenzyme Q10: Can improve brain and cardiac function at doses of 200 mg daily. Patients with methylation mutations will have difficulty manufacturing adequate CoQ10.

Vit B12: Sublingual forms and injected B12 can be very helpful. Depending on the presence or absence of methylation mutations, some patients will do better with hydroxycobalamine or methylcobalamine rather than the standard cyanocobalamine.

Magnesium: Oral magnesium can cause diarrhea in some people. If tolerated, try 400 - 800 mg daily. Magnesium is essential for ATP formation and nerve function. It is depleted with stress.

5.) Exercise: mpact exercise has been proven to decrease symptoms when patients are able to exercise. Walking, stretching, yoga, Tai chi, water aerobics and other sports are perfect and medicinal. An exercise and stretching video can be obtained from the Oregon Fibromyalgia Foundation. The number of physiological and immunological benefits associated with exercise are too numerous to list. As soon as your pain scores decrease and you can tolerate exercise, start with 20 minute sessions of low impact exercise 3 times per week. Sauna for 30-60 minutes a day (start with 10 minutes) can burn more calories than strenuous exercise and may serve as a substitute for exercise until you are feeling able to return to regular activities. Dr. Lawrence Wilson’s book Sauna Therapy is excellent and worth reading if you are considering sauna therapy.

6.) Sleep: Shallow, non-restorative sleep is a hallmark of CFS, FM & PTSD. Shallow sleep offers a survival advantage for people sleeping in a dangerous environment by allowing them to arouse quickly if danger should approach. The trouble is that this PTSD-related arousal circuit can be difficult to turn off once it is set in motion and chronic insomnia can arise. The hyperarousal will often resolve when a person feels safe, but we know from war veterans suffering from PTSD that the memories can perpetuate the trauma reaction. A good night’s sleep is essential to improved function, so it is imperative that we find a way to reestablish stage 3 and 4 sleep for our patients. We have a long list of sleep enhancing medications and herbs for you to try. It may take time to find the medication that works best for you because everyone is different and what works perfectly well for one patient can have the opposite effect on another. Some people have such a high stress level that it is difficult to resolve their insomnia with a pill and it is stress reduction and counseling that restores their deep restorative sleep. If sleep apnea (periods of airway obstruction while sleeping) is not addressed, recovery is unlikely. A sleep study is necessary to make the diagnosis of sleep apnea. It is not uncommon for the hyperarousal state to abate as infections are treated. The mechanism for this reaction is unclear, but the response is sometimes dramatic.

In Summary:
Fibromyalgia, Chronic Fatigue Syndrome and autoimmune disease are not psychogenic diseases processes (they are not in one’s head). There is a growing body of research that confirms significant physiological abnormalities including increased serum TNF-alpha, IL-8, and IL-10, increased muscle glycation products and NFkB, reduced mitochondrial membrane permeability, abnormal unmyelinated axons in the skin, reduced mu-opioid receptors, increased spinal fluid substance P levels, imbalanced autonomic nervous system, disrupted sleep architecture, chronic respiratory infections, low vitamin D levels, reduced cerebral blood flow and abnormal pain processing. We believe these disruptions of normal physiology are related to infections that exploit genetic predisposition. We offer our patients a comprehensive approach to treatment by assessing and treating infection, insomnia, hormone imbalances, nutritional deficiencies and helping patients reduce stress. While treating infections there can be a “die off reaction” called a Herxheimer reaction which causes a temporary worsening of symptoms as the organisms are dying. It is a good idea to take a short break from treatment when this occurs and that means patients must be patient. The rewards are worth the trouble. Dr. Teitelbaum finds that approximately 80% of his patients improve after 8 to 12 months of treatment. We are constantly looking for ways to accelerate the recovery process. Most of our patients respond within 2-3 months of treatment, are significantly better at 6 months and the majority of our patients are asymptomatic within 12 months. Many of our recovered FM & CFS patients have offered to discuss their recovery process with new patients who find it hard to believe that coming out of FM is possible. Their contact information is available upon request.

What to expect:

1.) Medical Visits: We usually meet every couple of weeks for the first 3 visits to insure that patients are responding to treatment and showing steady improvement. Frequent visits are helpful in the beginning because there is a great deal of information to process, and the medications we use require some monitoring. Once the right combination of medications is determined, visits are much less frequent.