PHOENIX RISING

Report From the Seventh Annual AACFS Conference

by Rich Van Konynenburg

On October 12, 2004, I reported on the first talk, given by Dr.Ritchie Shoemaker, M.D., at the pre-AACFS conference session held by the Wisconsin CFS Association at Luther's Blues restaurant in Madison, Wisconsin, on October 7, 2004. I would now like to report on the second talk given that day, by Dr. Jacob Teitelbaum, M.D.

As I mentioned in an earlier post, these talks are available on VHS video tape or DVD from the Wisconsin group's website at http://www.wicfs-me-org. I've decided to go ahead and write reviews, anyway, so there will be something written about these talks that is directly available on the internet.

Biographical Comments on Dr. Jacob Teitelbaum, M.D.

Patti Schmidt has written an excellent article about Dr. Teitelbaum, which can be found at http://www.immunesupport.com/Library. (Type teitelbaum into the search box, and click on the last item listed.) Some of the following comments are based on Patti's article, some are based on his talk on Oct. 7, some on his book, From Fatigued to Fantastic, 1996 and 2001 editions, and some on his website.

Jacob Teitelbaum is currently 52 years old. He grew up in Cleveland, Ohio. His father died when he was 17, and he paid his own way through college and medical school. He finished his bachelor's degree from Washington University in St. Louis early and entered the Ohio State University Medical School. By his own testimony, he was a high-achiever. In 1975, during med school, after a period of high stress, which he said was due largely to trying to mediate problems in his family, he got CFS, which did not have a name at that time. He referred to it as "the drop-dead flu."

He dropped out of med school for a year, and essentially became homeless, sleeping first in his car and then in a park. He reports that this was actually a very positive experience, and that he met a lot of good people during this time. With the help of his family and friends and his own efforts, he was able to recover enough to go back to med school. He focused on endocrinology, nutrition and muscle disorders while there.

He finished med school, and from 1977 through 1980 he did his internship and residency in internal medicine at Washington Hospital Center in Washington, D.C. After a few months with an HMO in Annapolis, MD, which he joined as it was going out of business, he set up private practice in Annapolis, and this grew to a multidoctor office. He became board-certified in internal medicine in 1980. In 1996 he left this practice and started the Annapolis Research Center for Effective FMS/CFIDS Therapies, which he continues to operate today.

When he began his practice, he started to see a lot of patients with similar symptomatology, which later was defined as CFS. He studied the medical literature, trying various treatments, some conventional and some alternative, and adopted those that he found to work. He kept refining his protocol. As he had more success in helping people with CFS, he began to receive patients from farther distances. He performed a preliminary, unblinded, non-placebo- controlled study of his treatment protocol, which was published in the Journal of Musculoskeletal Pain in 1995. This was followed by the first edition of his book, From Fatigued to Fantastic, in 1996.He said that although many people saw merit in his protocol, there were also many doubters, who attributed his success to the placebo effect. He then performed a randomized, doubly-blind, placebo- controlled study, which was published in the Journal of CFS in 2001, followed by a revised edition of his book the same year.

In order to be able to reach more patients, he implemented a website with a computer program that analyzes a person's symptoms, history and lab test results and makes recommendations for treatment. He offers two options; the first, which costs more and takes longer, puts out a complete medical record; the second, shorter and less expensive, just recommends treatments and gives directions. Either of the following two urls will take you to this site: http://www.endfatigue.com or http://www.vitality101.com.

Dr. Teitelbaum also instituted a program of workshops at various locations, in which he trains doctors in his approach to treating CFS and fibromyalgia.

Defining and Diagnosing CFS/Fibromyalgia

He reported that he sees these as a collection of many different conditions. He is not concerned with whether one calls "this problem" myalgic encephalomyelitis, fibromyalgia, chronic fatigue syndrome, chronic Epstein--Barr virus, systemic Candida, fibrositis or something else. He is concerned with assessing "what is going on" and treating it.

He emphasized that the case definition for CFS that was developed under the auspices of the Centers for Disease Control and Prevention (Fukuda, et al., 1994) was meant for research purposes, not for clinical use. As such, it is very restrictive. Based on it, the estimates for the number of people involved in the U.S. is about half a million, but he said that it is really about 6 million if you don't use all the "eliminating factors."

He also described the diagnostic criteria for fibromyalgia that were developed by the American College of Rheumatology, which essentially say that if you hurt all over (in all four quadrants of your body)and have for at least 3 months, and you have at least eleven out of eighteen of the defined tender points, you have fibromyalgia. He said that most doctors don't know how to do this test, and that he doesn't teach it in his workshops.

He simply says that if you have chronic widespread pain, you probably have "this problem." Furthermore, if you are tired, achy, have brain fog and can't sleep, "you have 'this problem' until proven otherwise." Normally, if a person is exhausted, they should be able to sleep all day and all night. When you see the paradox of a person being exhausted but unable to sleep, it means that hypothalamic dysfunction is taking place, and this is the key factor in CFS/FM.

He said that he had often had the experience that a new patient would come into his office and the first thing they would do would be to set a water bottle on his desk. He would say, "Let me guess:you're tired, achy, brainfogged and can't sleep." The person would say, "How did you know that?" He would respond, "I used 'Teitelbaum's water bottle sign.' "

Discussion of Symptoms

He noted that there are many associated symptoms, including spastic colon, migraine, pelvic pain, sensitivities to chemicals, medicines and foods, mitral valve prolapse, muscle pain syndromes, and others.

About 25% of these patients will not have pain, but will have chronic fatigue and brain fog. Brain fog is manifested by difficulty with word finding and substitution, and lack of short term memory. About one-third will have episodic disorientation, i.e. suddenly getting lost in surroundings that should be familiar to them. Brain fog is not the same as dementia, such as seen in Alzheimer's disease. He represented the difference by saying that in brain fog, "you forget where you left the key," while in Alzheimer's, "you forget how to use the key."

The brain fog constantly goes along with the other symptoms [By this, I think he meant that it goes up and down as the other symptoms go up and down.] Many have bowel dysfunction, also called spastic colon. Many have increased thirst, which he described by the expression, "Drink like a fish, pee like a racehorse."

There are recurrent infections, low body temperature ("98.6 degrees F. is a fever" in these people), weight gain (average is 32 pounds, some up to 100 pounds), yeast overgrowth, thyroid deficiency (from hypothalamic dysfunction), poor sleep and low growth hormone, the latter two contributing to the weight gain.

Teitelbaum's Model of What CFS Is and What Causes It

Dr. Teitelbaum attributes CFS to dysfunction of the hypothalamus. He said that certain types of behavior can lead to this dysfunction, including "having low self-esteem as a child, overachieving, trying to get approval from somebody who wasn't going to give it, trying to be all things to all people, and taking care of everybody but yourself." He used the analogy of a fuse in an electrical circuit in one's house. If the circuit is overloaded, the fuse blows. The fuse is there to protect the circuit and the house. He likened the hypothalamus to the fuse. It protects a person against what is perceived as an overwhelming stress. In the electrical analogy, it is not enough simply to turn the circuit back on. It is also necessary to determine what caused the fuse to blow and to correct it, or the fuse will simply blow again. He emphasized that the same is true of hypothalamic dysfunction. Resuming the same behavior will cause the problem to reoccur.

He noted that some have gradual onset, and some have sudden onset of CFS. Sudden onset can be precipitated by an injury, an infection, a toxic exposure, or can occur as a postpartum event. Gradual onset can be brought on by such things as hormonal problems, autoimmune responses, yeast or fungal infections, or excessive antibiotics use.

In his view, hypothalamic dysfunction is the common denominator. It affects the hormonal system, sleep, body temperature and blood pressure, for examples.

His Two Published Studies

In his first study, he treated 64 patients with CFS symptoms using the protocol he had at that time. The fatigue went away in 57% of the patients, and 35% felt somewhat better, but not totally well. It took about seven weeks for them to start feeling better on his regimen.

In his second study, which was randomized, doubly blinded and placebo controlled, there were 32 patients in each of the two groups who completed the study, and four outcome measures were used. These included (1) an interview as to whether the patient felt much worse, somewhat worse, the same, somewhat better or much better, (2) a visual analog scale with five questions pertaining to energy, sleep, mental clarity, achiness and overall sense of wellbeing, (3) a disability index, and (4) the Tender Point Index. The treatments were individualized, and included treatments for hormonal deficiencies, nutritional deficiencies, poor sleep, infections, and low blood pressure and autonomic dysfunction. Greater improvements were found in all four outcome measures in the treated group than in the placebo group, with high statistical significance. When asked how they were doing at the end, 50% of the treated group said "much better" and 41% said "somewhat better." In the placebo group, 10% said "much better," and 27% said "somewhat better." Follow-up after 2 years showed that the improvement continued to increase. Many people were able to come off the treatments.

Dr. Teitelbaum concluded from this study that effective treatment is now available for fibromyalgia and chronic fatigue syndrome. He emphasized that he is not talking about a "cure," but about "effective treatment." He said that "many people find that their illness is no longer a problem." He did stress, however, that "you can blow a fuse again if you go back to the same behavior." He was referring to the types of behavior listed in the previous section.

His Treatment Philosophy

Dr. Teitelbaum believes that treatment needs to be individualized, depending on the particular patient's profile, and that it is necessary to treat several key aspects of the disorder simultaneously in order to prevail against it. He does not recommend starting all the treatments simultaneously, however. Rather, he spaces the start of various treatments 1 to 3 days apart. The main essential aspects that he treats are represented by the acronym "THINS," which stands for "toxins, hormonal deficiencies, infections and immune dysfunction, nutritional deficiencies, and sleep problems."

In choosing treatments, he is basically a pragmatist. He uses what he finds works. He prefers orthomolecular (natural) substances, but he also uses prescription drugs. He is continually updating his treatment protocol as he learns of new treatments that have been shown to help. For example, he has recently incorporated heparin treatment for hypercoagulation from David Berg, and he has incorporated the visual contrast testing and neurotoxin treatments from Dr. Shoemaker. The most recent list of substances he uses in his treatment protocol for various patients can be found on his website. As time goes by, he adds some things and removes others.

Toxins - Dr. Teitelbaum said that in view of the fact that Dr. Shoemaker had just discussed toxins at some length, he would move on to the other aspects of his treatment protocol. He mentioned that he has a high regard for Dr. Shoemaker and that he, Dr. Shoemaker and Dr. Vrchota planned to have dinner that evening to discuss various aspects of CFS/FM treatment, among other things.

Hormonal Deficiencies - He noted that the hypothalamic hormones as well as the hormones they control are "off-line across the board." Melatonin is disrupted, leading to disruption of the day/night cycle. There is low growth hormone, low DHEA, low antidiuretic hormone (leading to the high daily urine volume), elevated prolactin (because the hypothalamus normally depresses prolactin secretion), low thyroid hormones, low cortisol, low testosterone, low estrogens, and low oxytocin.

DHEA - DHEA is made by the adrenal glands, and this is the hormone that they make in highest quantity. A lack of DHEA is difficult to detect clinically, but it may lead to less hair growth on arms and legs. He recommends measuring DHEA sulfate and keeping it around 150 to 180 micrograms per deciliter in women, and between 350 and 480 in men. He checks DHEA sulfate every couple of months at the beginning of treatment, and then not as often after that. The brand of DHEA used to supplement is important. Some are ineffective. Pharmaceutical brands are good. Supplementing DHEA can make a big difference. If your doctor will not order the test, you can go to Dr. Teitelbaum's website and get a request form that you can take to your lab, for no charge, and get the test run.

Thyroid - For thyroid hormones, the normal blood tests are not meaningful in CFS. TSH is not an accurate measure of thyroid hormone status when there is hypothalamic dysfunction. He checks TSH the first time, in case it might be high, and he routinely tests free T4. He relies mainly on looking for symptoms of low thyroid, which include fatigue, achiness, low body temperature, weight gain, constipation (which may, however, also be caused by bowel infection), dry skin, thinning hair, thinning eyebrows, and brain fog. If you have these, you should have a trial with thyroid hormone. Since all of the CFS/FM patients have some of these symptoms, he recommends treating all of them with thyroid hormone unless it is elevated. He noted that studies show that the large majority of people who are being treated for low thyroid are not happy with their treatment, because they are being treated wrongly. He recommends using Armour thyroid, which contains both T3 and T4, rather than Synthroid, which is T4 only.

Some patients have thyroiditis, which can cause the thyroid hormones to rise during the inflammation. After the thyroid has been damaged, the thyroid hormones will then drop. He recommends getting a prescription for Armour thyroid, and doing repeated testing to adjust the dose in this case [Let me add here that I think it might be possible to stop the thyroiditis by getting the glutathione level up.--Rich].

Cortisol - Dr. Teitelbaum said that with the cortisol range considered by the medical profession to be normal on standard lab tests (6 to 24 micrograms per deciliter), only 1 out of about 200,000 people are found to be abnormal. This is very unrealistic. A morning value of about 20 micrograms per deciliter is average. He said, "A value below 6 can kill you," so considering the normal range to extend down to 6 is not a good idea. He checks the morning cortisol value, and also looks for symptoms of low cortisol, which include low blood pressure, dizziness, recurrent infections (sore throats, swollen lymph glands), hypoglycemia ("Feed me within 3 minutes or I will kill you!"), fatigue, irritability/shakiness that is relieved by eating, and crashing during stress. If these symptoms are present, the person needs a trial with Cortef. It is important to use a low dosage, as Dr. Jeffries has emphasized--5 to 20 mg per day of Cortef, or 1 to 4 mg per day of prednisone. This disrupts sleep if taken after 4 p.m. He also recommends a product called Adrenal Stress End, made by Enzymatic Therapies/PhytoPharmica, which contains adrenal glandular proteins, licorice and nutrients needed by the adrenals. (Dr. Teitelbaum emphasized that he does not make money from the products he recommends. Any proceeds he makes from selling products go to charity.)

Estrogens - The symptoms of low estrogen in women are as follows: CFS/FM symptoms much worse the week before their period, hot flashes and sweats (though these can be caused by infections and toxins also), poor sleep, headache, low (or nonexistent) libido, fatigue, achiness, depression, and poor memory. Female long-distance runners lose their periods because of hypothalamic dysfunction, also. A hysterectomy, even with the ovaries left in, will cause low estrogen within two years, and this is based on work by Dr. Philip Sarrel at Yale University. Natural menopause begins five to twelve years before the period stops. So many women can be low in estrogen for various reasons.

Dr. Teitelbaum said that if a woman's CFS/FM symptoms are worse the week before her period, she should have a trial with natural estrogen. He said that Premarin, which is made from pregnant mare urine, should not be used, but rather natural [I think he meant bio-identical--Rich] estrogen, made from soybeans, should be used. He said that the patches contain all natural estradiol, and that is O.K., but it could produce a slight increase in the chance of breast cancer, so he uses estriol and estradiol (Estrace) together. This lowers the risk of breast cancer and also has favorable effects on the immune system. He suggests using this combination, called Biest, at 2.5 to 5 mg per day. [Let me say here that he didn't progesterone, but that the late Dr. John R. Lee used to emphasize the problem of estrogen dominance over progesterone inmany women, so it might be a good idea to check for that, too.--Rich]

Testosterone - Dr. Teitelbaum pointed out that testosterone is needed by women as well as men, but at lower levels. The symptoms of low testosterone are pain, low libido, low energy, sexual dysfunction, low blood count, depression, low total red blood cell mass, and poor stamina. He said that a study has been completed by Prof. Hillary White of Dartmouth, and he suspects that the results are going to be that supplementing testosterone lowers the pain in women with FM, but it hasn't been published yet.

He recommends testing the free testosterone, and he finds that in male CFS/FM patients, 70% are in the lowest 20 percentiles. He does not check the circadian rhythm of the hormones because of the cost and because he thinks he can learn enough from a single measurement. He recommends using natural [bio-identical--Rich] testosterone. In men treated with testosterone, diabetes improves, angina decreases and the cholesterol level goes down. [Let me just add here that it is important to test for prostate cancer in men before starting testosterone, because testosterone can exacerbate that. --Rich]

Sleep Problems - Dr. Teitelbaum said that the sleep problems in CFS/FM are due to hypothalamic dysfunction. Most sleep drugs do not give you deep sleep; they just make you unconscious for a while. He suggests trying several things until you have a combination that works to give eight to nine hours of solid sleep per night. He noted that 100 years ago, the average American got nine hours of sleep per night, and now we are down to less than seven on the average. He thinks this is one of the reasons why pain and CFS are on the increase.

Dr. Teitelbaum recommends starting with melatonin, but the dosage should be much lower than is normally sold--it should be about one-half milligram per night. Then he recommends the sleep formula sold by Enzymatic Therapies, which contains theanine, hops, Jamaican dogwood and wild lettuce, one to four capsules at bedtime or one hour before. This will also decrease pain and anxiety and relax muscles. Calcium and magnesium at bedtime can also be helpful. 5- HTP at 300 mg can also help, but it takes 6 to 12 weeks to start working. It can also decrease FM pain and cause weight loss as well as helping sleep. For some people, the sleep formula alone will work, but most patients need a mix of natural and prescription sleep
aids.

Dr. Teitelbaum said that the best prescription sleep aid is Ambien. Studies do not show that there are problems if it is used long term, and he has no problem with prescribing it for five years if needed. In about 1% of patients he has found that it will cause depression after about a year. But if it is stopped, the depression leaves in two days.

His second choice is trazodone (Desyrel). For people with restless leg syndrome, he uses Klonopin. Elavil is his last choice, because it has high side effects, including weight gain, sedation, aggravation of low blood pressure, and aggravation of restless leg syndrome.

Soma, Klonopin, and Prozac should not be stopped suddenly. It is important to taper down slowly with these. He said that they are not addictive, but that there are withdrawal symptoms.

Infections and Immune Dysfunction - Dr. Teitelbaum commonly sees nasal congestion or sinusitis and bowel dysfunction. Treatment for yeasts usually makes spastic colon go away.

One out of six patients has parasites, but most labs are not able to do a proper parasitology test. He recommends using either Great Smokies Diagnostic Lab or the Parasitology Center in Arizona. Use a laxative to flush the parasites out into the stool sample. Giardia, cryptosporidium, blastocystis and amoeba are commonly seen in the U.S. Using water that has been filtered by reverse osmosis will prevent reinfection with parasites.

In men, he sees low grade prostatitis. Other common infections are from mycoplasma, rickettsia, and Lyme disease. Viral infections include Epstein--Barr, cytomegalovirus, HHV-6, and others. Many of these pathogens are hitchhikers, because the immune system is not working properly.

He said that it isn't necessary to kill all of them, but just to get the immune system working properly. You do need to get rid of parasites and yeasts, though, because the body can't get rid of them on its own. In some cases, antibiotics will be needed for some of the bacterial infections as well.

The symptoms of yeast infection are nasal congestion, bowel dysfunction, food sensitivities because of leaky gut, recurrent infection, and postnasal drip. Yeasts should definitely be treated if there is gas, bloating, diarrhea, constipation or nasal congestion. Even more simply, if you have CFS or FM, treat for yeast. Pelvic, skin or nail fungal infection indicates that you have yeast infections. The things that cause yeast infections are high antibiotics use, high sugar intake, and high cortisone use. It can be diagnosed by the history. The number one yeast treatment is to avoid sugars, including honey.

Dr. Teitelbaum said there are three types of sugar cravings, typified as follows: 1. "Feed me now or I'll kill you!"--low adrenals 2. The "happy Ho-Ho hunter": "I'm feeling good, but something sweet would sure be nice!"--yeast infection 3. "I'm depressed. I need chocolate or sugar."--low estrogen

He said that if you knock out the yeasts and treat the low adrenals, after 10 days the craving will go away. He recommends sugar substitutes, especially Stevia (available from Body Ecology). Saccharine (the pink packets) is also O.K., but he does not recommend Nutrasweet (the blue packets). Some people do get diarrhea from sugar substitutes, though. Russell Stover has a line of sugar-free chocolate that yeasts will not ferment.

To treat the yeasts, he recommends Acidophilus Pearls, two pearls, two times per day, together with Primal Defense, available from Garden of Life (Dr. Rubin), taken for five months. The most important drug to take is Diflucan at 200 mg per day for 6 weeks. He recommends getting the generic version, which just came out. It will cost $40 for 6 weeks of treatment. In general, he recommends checking the pharmacy at www.costco.com to see what their price is for generics. They add a set percent markup, unlike many others. If they aren't local where you live, you can buy from them by mail.

Nutritional deficiencies - Dr. Teitelbaum stated that the American diet is terrible. He refers to the Standard American Diet as SAD. The average American has 150 pounds of sugar added to his or her diet each year. Soda pop contains about one teaspoon of sugar per ounce, and some people get 64-ounce portions. One can of soda pop contains enough sugar to depress the immune system by 30% for four hours. Eighteen percent of the average American's calories come from sugar. Another eighteen percent comes from white flour. This is a disaster. People are not getting enough of the essential nutrients. There is poor absorption of these in the gut. Alcohol consumption causes nutritional deficiencies. Americans are deficient in dozens of nutrients. It is nearly impossible to get what you need from the diet.

Dr. Teitelbaum does not do extensive nutritional testing because of the cost, and because he thinks it's unnecessary. He does recommend testing ferritin and percent iron saturation for iron, and also vitamin B12 testing. If ferritin is under 40 nanograms per milliliter or iron % saturation is under 22%, he gives iron supplementation. If B12 is under 540 picograms per milliliter, he prescribes B12 shots.

To take care of the rest of the nutrients that he simply presumes are low, he uses a powder called the Energy Revitalization System,which contains about 50 different nutrients at optimally high levels. One scoop is the therapeutic dose, and one-half scoop is the maintenance dose.

The single most important nutritional deficiency in this disease is in magnesium. The pain will not go away unless you get it up.

This powder contains amino acids among other things. They will build glutathione, the lack of which is a key part of the immune dysfunction in this illness. They will also build neurotransmitters. The B vitamins in the powder will help the cells to produce energy. Some people get diarrhea from the magnesium in the powder. They should reduce the dosage to one-half scoop. The powder has whey as a protein source. Most people are not allergic to it, but some are. There is no calcium in the powder, because that should be taken at bedtime.

For osteoporosis, calcium helps a little, but adding this powder helps more. Even better is strontium at 680 mg per day. A paper in the New England Journal of Medicine showed that strontium can produce a four percent increase in bone density per year.

Lab Tests

The most important lab tests to get, in Dr. Teitelbaum's opinion,
are as follows:
Free T4
Iron levels
B12 level
Blood chemistry panel
Complete blood count
Sed rate
Stool testing
Morning cortisol and DHEA
IgE for allergies

See his website for priorities.

Mind-Body Factors - Dr. Teitelbaum said that on a zero to ten scale rating how they feel, his patients average at 3.5 at the beginning, and at 7 or 7.5 with his treatment. He said that if a patient feels that they would like to see a psychotherapist, that's fine, but they should make sure that this is a one-syllable word. In other words, they go to one that actually helps them rather than causing them more problems. If it is not helping, they should stop and find another one.

Patients should recognize that most of the time when we are worrying, we are not actually in imminent danger. If we realize that, our adrenals will calm down. He said that even if there is a bullet two inches away moving toward your head, and thus you are in imminent danger, you still shouldn't worry, because it will be over soon!

He recommends being gentle with yourself.

Pay attention to your feelings, not to what your brain tells you, because it will tell you what you have been trained to do to get approval, and it isn't helpful if you are overly driven to do that.

Do not try to make up for lost time if you start to feel better.

Exercise - Start by walking only as far as you can and still feel good afterward and better the next day. Then increase the distance slowly. Keep in mind that your body is not able to generate energy aerobically if you have CFS.

Doctors and Final Comments

Dr. Teitelbaum said that many people with CFS/FM are angry with their doctors, but he asked us to please keep in mind that under our managed care system, your doctor can only spend about seven and one-half minutes with you. What's more, your doctor may not be trained to deal with CFS or FM.

You need to see someone who can take the time needed to treat you properly, and who knows how to treat CFS/FM. Dr. Teitelbaum said hecan train a doctor to do this in two days, and he offers workshops to do it. He has a referral list of doctors who have taken his workshops. He also offers a computer program on his website that will analyze your medical history and blood tests, and will recommend a treatment protocol. If you are covered by Medicaid, it will be free. If you do his short-form test, it costs $88. If you want the program to produce a complete medical report for your doctor, it costs somewhat more.

His main message was that chronic fatigue syndrome and fibromyalgia are treatable, and that many people can be helped to feel healthy using his protocol.

Rich Van Konynenburg