Dr a : CFS/Fibromyalgia (CFS/F)

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Chronic Fatigue Syndrome/Fibromyalgia (CFS/F)

There are no diagnostic laboratory tests to confirm the diagnosis of a patient with Chronic Fatigue Syndrome/Fibromyalgia. In most instances, chronic fatigue syndrome and fibromyalgia coexist.

Although the patient experiences severe persistent fatigue, pain that migrates (tenderness at 11 of 18 specific tender points located on the upper back and chest, insides of the elbows, lower back, upper thighs, and front of the knees), cognitive dysfunction (brain fog), debilitating insomnia, worsening of symptoms with activity and exercise, depleted energy despite resting, unexplained weight gain, digestive problems, joint pains, and depression.

There is no one single cause for fatigue, including chronic fatigue syndrome/fibromyalgia. Most patients receiving this diagnosis visit multiple specialists, and then receive an antidepressant. When the fatigue begins to have a life of it's own, virtually every system is affected. Treatment for this kaleidoscopically complex disease requires neuromoleculargastroendocrinoimmunologic thinking. Linear thinking, which is treating with one or two pharmaceuticals, is futile. The SSRIs antidepressants take a brain that is not working so well and worsen the brainfog. Please refer to Dr. Amen's brain scans of chronic fatigue syndrome patients on brainplace.com.

During a medical conference I attended with Bland, Ph.D. I learned that the first human to be diagnosed with Chronic Fatigue Syndrome was the world class elite cyclist, Greg LaMand. As is usually the case, all of his extensive laboratory tests and diagnostic studies were "normal." But he was Greg LaMand, so they tested him at a microscopic level. More specifically, they examined his mitochondria (which reside inside each of our one trillion cells and produce energy) and discovered his mitochondria were shot. I tell my overexercised patients that they are whacking out their mitochondria, and they laugh. Thus, Greg LeMond was the first human to be diagnosed with mitochondrial myopathy. We call it Chronic Fatigue Syndrome. During most physicians medical training, we were taught that this was not a real diagnosis. Please know we are not trained to think on a molecular level, but we continue to learn.

Each patient is biochemically unique and requires a different treatment plan. Years later, we now know that if we ask different questions, we get different answers. One very important question is "when was the last time you felt well." These patients have mitochondrial (energy) abnormalities, bona fide brain changes, hormonal imbalances, disabling sleep disturbances, stealth viruses that can only be detected via PCR (Polymerase Chain Reaction blood testing), multiple nutritional deficiencies and insufficiencies, and usually gastrointestinal dysfunction. Often the GI tract is malabsorbing and requires short term intravenous treatments. If stealth viruses such as Mycoplasma fermentans and incognitus are found, treatment with antibiotics is necessary, complete with gut reflorestation, and retesting to insure eradication of the stealth virus. Most physicians test for Mycoplasma pneumoniae, which is negative. Note that most bacteria have cell walls which renders them attackable. Mycoplasma fermentens has no cell wall, which is of paramount importance when constructing a treatment plan.

As the dominos fall in this disease, the patient has twenty to thirty symptoms. It seems to me, depression is to expected. But depression or Mycoplasma didn't start the disease. Published research is teaching us to revisit the Greg LeMond case, as the mitochondria needs to be restored.

You may be asking what the heck is the mitochondria and why is it so important in the treatment plan. The mitochondria lives inside each of our trillion cells and produces energy. If the mitochondria is no longer capable of producing energy, you are living in your bed or sofa. Your life is on hold. So let's return "Back to the Future" and restore the mitochondria. OK, so the mitochondria produces energy and perhaps your mitochondria is not working. There is no commonplace test for how well your mitochondria is functioning at the present time.

The big question is how do you restore your mitochondria so you can have energy again, not be in chronic pain from the fibromyalgia, and sleep like you formerly did. During medical training we actually learned about the Krebs Cycle which produces ATP and all of this occurs in the MITOCHONDRIA. Practincing Integrative Medicine, one realizes why we were required to take biochemistry. When you revisit those long days of lectures when you had to memorize amazing biochemical mumbo jumbo, you realize perhaps there was a reason to learn biochemistry. The bottom line answer is that D-Ribose will restore your mitochondria and be a good start to help you regain your former state of good health. This is a major concept that was reported in the medical literature by Teitelbaum, MD, a senior author of "Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia--a Placedbo controlled Study" and Effective Treatment of CFS and Fibromyalgia with D-Ribose."

Basically, D-Ribose works on the mitochondria and helps your body produce ATP (energy) again. This is a great start. Then your physician can help you get to sleep, restore hormonal balance, correct nutritional deficiences, and restore HPAaxis balance (brain balance). I have trained with physicians who specialize in CFS/F and was originally confused by the prescriptions that were of an Amphetamine category. After studying SPECT (single photon emission computed tomographry) brain scans, I saw big holes in the PFC (Prefrontal Neocortex) part of the brain of patients diagnosed with CFS/F. So if you feel as though you are not thinking clearly, perhaps you are correct. The good news is that your brain and your body can heal.

The Mechanism of Action of the FDA approved pharmaceutical for Fibromyalgia presently on television:

There is a rare disease called PEPD (Paroxysmal Extreme Pain Disorder) which is caused by a genetic mutation that affects the sodium channels which play a critical role in transmitting pain throughout the body. There are eight known cases throughout the world. It is interesting that the only treatment for PEPD is an anticonvulsant pharmaceutical. What you are seeing on television as being the cure for Fibromyalgia is an anticonvulsant. Pain is only one feature of CFS/F. (a Foss-, DO - August 24, 2008 research)

The Mechanism of Action of D-Ribose:

The following is the result of research published by Teitelbaum, MD, et al, The Use of D-Ribose in Chronic Fatigue Syndrome and Fibromyalgia: A Pilot Study, The Journal of Alternative and Complementary Medicine, November 9, 2006

The postulation has been made that decreased energy production may result in hypothalamic dysfunction, which then manifests as hormonal imbalances (despite normal laboratory studies), insomnia, immune system dysfunction with resultant infections, and autonomic dysfunction.

The exact etiology is unclear; however, an alteration in muscle adenine nucleotide metabolism in adenosine triphosphate (ATP) levels results in depleted energy reserves.

D-Ribose, is required as a key structural component in the DNA, RNA, ATP, FADH, coenzyme A, and NADH needed by the mitochondria to maintain energy homeostasis.

Treatment involves restoring mitochondrial function, HPAdrenal Axis (brain) restoration, restoring deep stage sleep, hormonal modulation with physiological (small) doses of hormones despite what your laboratory studies report, intravenous therapies, and possible long term antibiotics such as Doxycycline, Tetracycline, Zithromax, or a Quinolone. Occasionally, patients are on medications up to three months. Reestablishing stage four deep sleep is vitally important, which may also require temporary medication. Nutritional supplementation, probiotics (the good bacteria found in yogurt) are also recommended.

The good news is that patients can experience dramatic improvement and return to a full life. The unfavorable news is that insurance usually doesn't pay for consultations, intravenous therapies, and some prescriptions they may deem are unecessary. Our present medical care system is a disease care system. My hope is that we move to a health care system.

The following is a brief synopsis of what CFS/F (Chronic Fatigue Syndrome/Fibromyalgia) is and how to treat it, according to the groundbreaking research found in the book From Fatigued to Fantastic, by Teitelbaum, MD

Hypothalamic and mitochondrial dysfunction has been suggested in CFS/FMS which results in disordered sleep, subclinical hormonal deficiencies, and immunologic changes. Laboratory testing needs to be more extensive and interpreted somewhat differently. A panoramic—thinking outside-the-box—view is essential.

For more information regarding D-Ribose and Dr. Teitelbaum's study titled "Effective Treatment of CFS and Fibromyalgia" see full text at www.Teitelbaum.com.

This is a syndrome with myriad symptoms that at first blush do not seem related. An FDA approved pharmaceutical pill the size of Montana is not going to help. CFS/F is finally a recognized disease with a bona fide ICD code, however, most doctors are not trained to treat it. Dr. Teitelbaum was kind enough to allow me to train with him in polis, land. Dr. Teitelbaum is now the medical director of The Fibromyalgia and Fatigue Centers which has a chain of treatment centers throughout the US - see www.FibroAndFatigue.com.

Some, but not all, common symptoms include:

disordered sleep

debilitating fatigue, often accompanied with fibromyalgia pain

bowel dysfunction

brain fog and depression/possibly secondary to brain changes seen on brain scans and HPAdrenal Axis Insufficiency

feeling worse after exercise

Research strongly suggests mitochondrial dysfunction as a unifying theory in CFIDS/FMS leading to hypothalamic (brain) damage -- (written 2003 by Dr. secondary to training with Bland, Ph.D)

Thyroid Function

Dr. Janet Travell discussed thyroid treatment at her 94th birthday party (Dr. Travell was the White House physician for Kennedy and ), and she is the world's leading authority on chronic myalgic (muscle pain) patients. Dr. Travell treats with thyroid even if tests are normal.

Patients have difficulty converting T4 to T3 and have thyroid receptor resistance. FMS patients often require compounded T3 sustained release.

Other treatments for thyroid include T4 (Synthroid), Armour 60 mg or one grain which is equivalent to 100 mcgs of T4, the T4/T3 protocol, and patient specific dosing of T3 SR.

Adrenal Insufficiency

Treating thyroid can increase patient's cortisol metabolism and unmask subclinical adrenal insufficiency.

If this occurs, return to the beginning and treat adrenal insufficiency with B1 500 mg. b.i.d. and Taurine 1000 mg t.i.d. for four to six weeks, then retry thyroid treatment.

20 mg. of Cortef (also called Cortisol and Hydrocortisone) is equivalent to 5 mg. of Prednisone.

Licorice extract (DGL) is also salubrious for exhausted adrenal glands. Please note that regular licorice raises blood pressure.

DHEA

As patients improve, bodies begin to make DHEA on their own.

Female dosing of DHEA is 10-25 mg. a day (blood levels of DHEA-S goal is less than 200 mcg/dl)

Male dosing of DHEA is 25-50 mg a day (blood levels of DHEA-S is less than 480 mcg/dl)

This hormone got the name "the fountain of youth hormone" secondary to reports of gray hair returning to it's original color which is not usual

As DHEA may convert to Androstenedione, Testosterone, or Estradiol, I often suggest 7-Keto DHEA

Estrogen and Progesterone

Biestrogen which is made by a compounding pharmacist helps some women, 1.25 - 2.5 mg 1-2 times a day

Transdermal estrogen increases human growth hormone which is low in FMS patients (estrogen taken by mouth does not)

Climara 0.05 - 0.1 mg patch applied once a week

Estrace 0.5 - 2 mg a day taken by mouth

Progesterone (not Progestins or Protestogens) made by a compounding pharmacist, is to be taken with Estrogen. I usually prescribe 100 mg transdermally twice a day. Please note that even if a women does not have a uterus, she needs Progesterone for balance. There are Progesterone receptors from our brain to our toes. Progesterone is not just for "unopposed Estrogen" as most of us were trained in medical residency

Restoration of ATP Energy Sources

5 grams two to three times a day, many try a lower dose in the beginning, in the form of powder, tablets.....

Oxytocin

Oxytocin is an interesting brain chemical which is secreted during childbirth. Oxytocin is also produced during sexual climax and helps couples bond. The European endocrinologists explain that Oxytocin helps all the other brain chemicals work better. This helps my understanding of why sexuality is so important to relationships. This also helps me understand why Dr. Teitelbaum would occasionally prescribe Oxytocin when I observed him. As time progesses, we are beginning to understand that there is also a short circuit in the HPAdrenal Axis (the brain). Oxytocin helps restore function in the HPAdrenal Axis

Testosterone

Order a Free Testosterone level and order biochemically identical Testosterone via a compounding pharmacist

This is not the Testosterone which is used abusively by bodybuilders. Testosterone synthetics such as Decadurabolamin, etc. alters lipid profiles abnormally, increases liver dysfunction, decreases sperm count, and may cause left ventricular hypertrophy and resulting congestive heart failure

Men typically require 100-125 mg IM or transdermally every 7-10 days

Women typically require 2-4 mgs a day

Order blood levels to determine physiologic dosing, also listen to your patient

Disordered Sleep

Patients typically experience loss of deep stage 3 and 4 restorative sleep

Most addictive sleep remedies decrease time spent in deep sleep

Melatonin, Calcium and Magnesium, Ambien, Flexeril, and Elavil help restore the deep theta and delta stages of sleep

Restless Leg Syndrome

Treat with Iron if Ferritin is less than 40

Vitamin E 400 IUs (I prescribe Tocotrienol forms of Vitamin E)

Prescribe Kava, Ambien, Klonopin

Consider sleep apnea study ($l500-$2000) or video self sleeping

Autonomic Dysfunction

s Hopkins study demonstrated that the majority of CFS patients have NMH (neurally mediated hypotention) on tilt table testing.

Treatments include increased salt, water, Prozac, Zoloft, Ephedrine and Dexedrine

Immune Dysfunction and Infections

Chronic sinusitis often responds better to antifungals, nasal rinsing, dairy avoidance, daily use of the NETI pot, nasal spray with Bactroban, Xylitol, and Sporonox

Many patients have chronic urinary tract infections, and chronic, low grade prostatitis

Yeast overgrowth is common and treated with 3-6 billion units of probiotics on an empty stomach, Caprylic Acid 650 t.i.d., enteric coated Oregano Oil, Nystatin two 500,000 unit tabs b.i.d.-t.i.d. - start with one a day and slowly increase every three days to avoid a Herxheimer Reaction

After four weeks on Nystatin, start Diflucan or Sporonox every day for six weeks

Lipoic Acid 200 mg a day reduces the side effects of increased liver function tests

Patients remain on Nystatin for 5-8 months, even while on Diflucan or Sporonox to avoid development of resistant organisms

Infections

With PCR (polymerase chain reaction) testing, many patients are found to have occult infections such as Mycoplasma fermentans and incognitans, C. pneumoniae. HHV-6 variant A or B, CMV....

Therapy with various antibiotics is often necessary for two weeks to two YEARS, while on Nystatin

Natural therapies are also used to stimulate immune function

Nutritional Deficiencies

Patients with CFS/FMS are nutritionally deficient due to malabsorption from bowel infections, increased need because of illness, and inadequate diet

Patients require a broad spectrum high potency multivitamin, iron if indicated by blood studies, B12 in the form of Methylcobalamin at 3000 mcgs IM three times a week (recent studies indicate there are near absent CSF-cerebral spinal fluid B12 with normal serum B12 levels),

D-Ribose,Coenzyme Q10 200 mg a day taken with essential fatty acids and Tocotrienols, and Potassium/Magnesium Aspartate 1000 mgs twice a day if indicated

Weekly intravenous therapies utilizing the Myer's Cocktail and Vitamin C IVs help immensely, log onto www.drrobertamorgan.com and enter Intravenous Treatments and Injections

General Information

I extend my gratitude to Dr. Amen, Dr. Bland, Dr. Hertoghe, and Dr. Teitelbaum for their courage to travel uncharted waters and their generousity of sharing such forward thinking knowledge with me

For more information, log onto www.Teitelbaum.com

For more information regarding brain changes which can be seen on brain scans, log onto www.brainplace.com and look at the work done by G. Amen, MD

http://www.drrobertamorgan.com/chronic-fatigue-syndromefibromyalgia-cfsf.htm?msg=Thank+you+for+subscribing+to+the+Dr.+a++email+newsletter.