By Patti Schmidt
Patti Schmidt is an award-winning writer and PWC (Person with CFIDS), a former CFIDS support group leader, co-founder of the Greater Philadelphia CFIDS Alliance, and is an officer of the Board of Directors of the CFIDS Association of America. Ms. Schmidt has written about a wide variety of topics relating to coping with the disease and seeking out effective treatment.
Most people with CFS or FM recognize Dr. Jacob Teitelbaum's name: he's been published in all the relevant journals; many have read his best-selling book, From Fatigued to Fantastic and he maintains a well-known website (http://www.endfatigue.com). He also treats many patients and as a result, generates much word-of-mouth promotion within the community. In addition, he has belonged to a few patients' groups online – because, unlike most other physicians who treat CFS and FM patients, Dr. Teitelbaum has experienced these diseases first-hand.
After growing up in Cleveland, Ohio and finishing college in two-and-a-half years, he was studying to be an internist with special interests in endocrinology, nutrition and muscle disorders at Ohio State University Medical School. In 1975, he came down with "the flu" and for the next year was unable to return to school. He suffered from symptoms for years afterward; to this day, he still gets a few symptoms if he "does stuff that's not healthy…my body will call me on it," he laughs. But he considers those last few symptoms a kind of early warning system his body wisely and generously provides him so he knows when he's heading down a path that's not good for him. "I wouldn't get rid of those last few things if I could," he says. "They're my body's circuit-breaker. They protect me."
The illness he experienced and which interfered with his attending medical school changed his life and set him on his current path – to make a difference in the lives of CFS and FM patients. When he was ill, he didn't know what it was that he had, but he knew it was real, it was "something," and it was "devastating – it knocked me out of medical school for the year."
Dr. Teitelbaum did his residency training as an internist at a major medical center – Washington Hospital Center in Washington, D.C., from 1977-1980. His next stop was an HMO in Annapolis, Maryland, which was going out of business when he joined it, unbeknownst to him. This Health Maintenance Organization was a large organization where people paid a set annual fee for all their medical care. Six months later, the practice was finished. That event, which might be considered bad luck by some, turned out to be a blessing, says Teitelbaum now.
"I love Annapolis, and that job got me here," he says now. "And my patients said I was ‘not allowed’ to leave town, so I hung out my shingle and set up a practice of my own." That practice, began in 1981, is now called the Annapolis Research Center for Effective FMS/CFIDS Therapies and has grown to be one of the largest general internal medicine practices in Annapolis. "Back then there wasn't even a name for this illness," he recalls. "But one of the most common complaints in every medical practice is fatigue. I realized that something odd was going on when a lot of people with the same particular mix of symptoms I had were coming in to be treated."
An avid reader of the medical literature, Teitelbaum found many studies that he wasn’t told about in medical school and began applying them. "I began to treat patients with nutritional and herbal therapies, hormonal support when clinically indicated (despite 'technically normal' blood tests), anti-infectious treatments (including antifungals), physical therapy measures and sleep support," he remembers. "To my surprise, these previously untreatable patients started to get well. I was amazed to see my practice began to fill with patients who were coming in from all over the country." About the time his practice was burgeoning, the names “Chronic Fatigue Syndrome” and “fibromyalgia” were introduced for these illnesses, and he had a bone fide niche.
His practice and his protocols
Dr. Teitelbaum treated hundreds of patients over the next few years and refined his diagnostic and treatment protocols (to date he's treated more than 2,500 CFS/FM patients). His definitive study, "Effective Treatment for Fibromyalgia & Chronic Fatigue Syndrome: A randomized double-blind placebo-controlled study," was published in the Journal of Chronic Fatigue Syndrome in 2001; a preliminary study was published in 1995 in the Journal of Musculoskeletal Pain. That study claimed, "The researchers feel that an effective treatment for FMS and CFIDS is now available."
Teitelbaum's overall thinking about these illnesses is backed by something most other physicians don't have – regardless of how sympathetic they might be: they've never felt the "holy hell of it," or "the sting of disbelief." He has, and it shows in everything he says and does. For example, during our interview, when I use the word "yucky" to describe how it feels to be not only tired with CFS, but tired of being tired with CFS, he gets it. I hadn't phrased it in a way that a person who'd never has CFS would understand, but it was exactly what I meant, and he could relate to it.
Since Dr. Teitelbaum is personally familiar with many of the co-illnesses that go with CFS and FM, he's also tried many of the most well-known and well-used remedies. As a result, he knows not to recommend Dalmane or Valium for sleep, because they worsen sleep quality. He knows that it's critical to get 8-9 hours of deep, restorative sleep every night. He knows it's totally unacceptable to leave a person in pain.
"Having had the illness lets me know exactly what you're going through – I've been there," he says. His personal and professional knowledge of the illness informs his diagnostic and treatment protocols. "Usually, many problems occur at the same time, and you need to treat them simultaneously," says Teitelbaum. "You have to take a detailed history and then translate what those symptoms mean."
Basically, Teitelbaum's regimen can be (admittedly rather simply) summed up this way: "Fix the sleep, nutrition, hormones and infections and the patient will generally feel better." He's described his treatment protocol this way: "The whole protocol consists of more than 150 different treatments that vary from person to person, but let me give you the heart of the protocol. I view this illness not as the enemy but as a circuit breaker. In a house, you have a fuse box and, if there's a power surge, instead of burning out the wiring, it turns off the circuit breaker. That's what this disease is like. It protects people in the face of severe stresses – whether they're situational stresses, toxic exposures, infections, or a host of different things – by turning off that circuit breaker."
He considers the circuit breaker to be the hypothalamus in the brain. "What we found in our studies is that when that happens, there are four things you need to do to turn the circuit breaker back on.
You need to get the person eight to nine hours of solid sleep a night. You need to treat the nutritional deficiencies – and they're widespread. You need to treat the hormonal deficiencies; however, blood tests for hormone status are not reliable when the hypothalamus isn't working. Those tests are based on normal hypothalamic function, so if you rely on those tests, you're going to miss the problem. Instead, you determine deficiencies by symptoms," he said.
For example, if he identifies symptoms of inadequate adrenal function, such as low blood pressure and hypoglycemia, then he recommends an adrenal glandular. "Or there might also be an estrogen deficiency, characterized by decreased vaginal lubrication, diminished libido, symptoms that get worse the week before the period and night sweats," he said. "I treat these accordingly, using natural female estrogen from soy. It's critical to treat nutritional deficiencies," he stresses.
Since there are dozens of deficiencies, people used to have to take dozens of tablets per day. Not anymore. "Fortunately, there are now powders that can be mixed with water or juice and people can drink something good-tasting once a day," he said. The fourth thing is treating infections. "When you look for and treat these areas, our research shows that 91 percent of patients improve," he said. "A large percentage become totally healthy. We need to treat those key areas, and you also need to treat what ‘clicked off’ the circuit breaker in the first place, if it's still going on. The entire protocol can also be done without prescription drugs. We've developed it that way. People can go to my website and tailor a complete, all-natural protocol for their specific case."
About the time his preliminary and definitive studies were published, he wrote and self-published the book, From Fatigued to Fantastic (picked up by Penguin-Putnam and has sold more than 250,000 copies).
But considering that he was trying to treat patients, keep a five-doctor medical practice up and running, lecture and teach other physicians about CFS/FM, raise a family, write books, and tend to his own health and happiness, it's not surprising that at some point, the 40-some-year-old physician realized he simply could not reach as many sick people as he'd hoped. "There were still all these sick people – several million of them – out there without access to effective therapies," he said. "So I had a choice: I could continue to manage a very successful practice or I could basically focus on getting this information out to people." That decision was a "no-brainer," he says now.
Dr. Teitelbaum decided to treat patients at his clinic only five or six days each month, and lecture, teach and write on the other days – essentially, "get the word out." Then he had to figure out what he could do to make his program available to as many people as he could, as inexpensively as he could. The answer for most people certainly wasn't to go see the internist in his Annapolis-based clinic, because his full-scale work-up costs $5,800.00 and takes about six hours of his time. (He sees only eight new patients each month.)
His book reached hundreds of thousands, but it wasn't specific enough to offer each patient an individualized treatment program to help with the symptoms he or she suffered. He was teaching other physicians about the illnesses and sharing his protocols with them, but he could only teach so many so fast. What about a website, he thought?
That question led him, over the next three years, to spend $500,000 of his own time and money having a sophisticated diagnostic program developed that allows a CFS or FM patient to go to his website and get a diagnosis and a treatment program tailored to them individually. If they can't get their doctor to order blood tests they need, they can also get a lab requisition form or download a copy of his treatment program to bring to their own doctors.
The point, says Teitelbaum, is to provide patients with "as many options as possible." He calls the educational program a "computerized CFS/fibromyalgia specialist." The program will analyze your medical history and, if available, lab tests to create a detailed medical record of your case for your physician; analyze your history and lab tests to determine which of more than 50 common factors that contribute to your illness are active in your case (most people have at least 5-6 factors); list the treatments (both natural treatments you can start on your own and prescription treatments you can encourage your physician to prescribe for you) that are most likely to help you (in order of priority) with directions on how to use them; and give you a printout of about 60 pages of information sheets tailored to your case and underlying diagnoses.
"It's like a book tailored to your personal case," he says. "This will allow your physician to treat you in the limited amount of time that he has available, because everything's all set out for him, making both diagnosis and treatment easier." Because the program cost more than a half a million dollars in time and money to develop, as well as thousands of dollars a month to maintain, he charges a fee to use it – $160. "We've kept the price reasonable," he said. “We also want it to be available to everyone, so patients on Medicaid can use it for free."
For those who aren't looking for a thorough medical evaluation and who would simply like to know how to treat their CFS and FM effectively, the website offers a shortened version of the regular program which takes about 25 minutes instead of two hours and costs $88. "It still determines which treatments are most likely to help you and supplies detailed directions," says Dr. Teitelbaum.
Seemingly tireless in his mission to help CFS and FM patients around the world, Dr. Teitelbaum has written a new book – Three Steps to Happiness: Healing through Joy (Deva Press, 2003). "This book is about being happy," he said. "I wrote it to help people find out how to regain their life, to make a stand for themselves, to be who they are, and not care what anybody else thinks, to ‘follow their bliss.’" HW
For more information:
Dr. Teitelbaum’s website: http://www.endfatigue.com. Dr. Teitelbaum's office telephone: 410-266-6958; Toll-free number: 800-333-5287.
Editor’s Note: Three Steps to Happiness: Healing through Joy is available at https://www.immunesupport.com/shop/books.cfm and at Dr. Teitelbaum’s website.