From Fatigued to Fantastic!

by Jacob Teitelbaum

  Let me put this in perspective. In disc disease, X-rays and MRIs by themselves are not reliable in making the diagnosis. The same problem occurs with CMI and CS. Given fifty spine MRIs of patients with and without disc disease, radiologists cannot reliably tell which group of patients has severe pain and which group is healthy and pain free. Indeed, if you were to lie and tell the radiologist that the healthy group of patients had severe back pain, the MRI report would usually be read as showing several areas of disc disease. This is not to put down radiologists. The radiologists I’ve had the honor of knowing and working with have been superb. It simply shows the limits of our technology.

  Like disc disease, the diagnosis of CMI and CS needs to be made by a combination of MRI, symptoms, and physical exam findings that all match up. Unfortunately, many of the symptoms of CFS/FMS are similar to CMI/CS symptoms, making it harder to tell whether CMI/CS is rare in CFS/FMS patients or whether they all have CMI/CS. As research and clinical experience show that more than 85 percent of CFS/FMS patients improve with nonsurgical therapies, it is likely the former. However, because the MRI test shows normal-size bony structures in most CFS/FMS patients yet neurologic examination suggests CMI or CS, it could be that swelling of the brain or spinal cord tissue causes compression, despite a normal-size skull or spinal canal. A whiplash injury or other head and neck injuries, the head being bent backward during surgical intubation for an extended period, infections, and/or hormonal or nutritional deficiencies could each account for all the above findings. It may be analogous to carpal tunnel syndrome—a result of nerve compression that improves by decreasing tissue swelling with thyroid or B6 supplementation—without surgery.

  Although the exam for CMI and CS is complex, there are some screening tests that can simplify things and help you determine whether you need an MRI. Here are some examples:

  You have overactive knee reflexes (present in most CFIDS/FMS patients) and the reflex gets even more active if checked with your head extended backward while sitting up, so your head is looking up at the ceiling.

  You have a lot of trouble with the hand-flip exam: with the palms of your hands down in front of you (parallel to the ground, with one hand on top of the other and touching), repeatedly quickly turn the top hand over back and forth. This means the upper palm, alternating with the back of the upper hand, will be touching the back of the bottom hand. Flip the top hand back and forth around five to ten times.

  Your ablility to feel something cold diminishes markedly as a cold object moves from your face to your neck to midchest—for example, while your skin is touched with a cool spoon or other metal object. The spoon should not slide down, but three areas should be touched for one to two seconds each.

  If two of these three tests are positive and you have not gotten better on the SHIN protocol and the other treatments we’ve discussed, I would consider a referral to Dr. Rosner for evaluation. He is in North Carolina at 828-684-1076. It makes sense to me to treat this condition without surgery before spending thousands of dollars on MRIs and even more on surgery, with its attendant risks.

  There are also some other helpful tests that you can do yourself:

  Almost all CMI/CS patients have intense pain at the base of the skull that radiates to the head and neck. This is also common in people who have CFS/FMS without CMI/CS. In CMI/CS, though, it is more likely to be much worse when the head is tilted all the way back for thirty seconds while sitting, so that your head is facing the ceiling. In this position it is also likely to be worse when coughing. In addition, if you have nystagmus (the eyes, while wide open, involuntarily flit back and forth or in a circular motion) when the head is tilted back, this also suggests CMI/CS. Have someone watch your eyes while you do this.

  If you can do a fairly quick tandem walk for fifty feet, according to Dr. Rosner, you probably do not have CMI. The tandem walk test is similar to the test for drunk drivers. Put one heel just in front of the toes of the other foot with each step you take. Try to walk a twenty-five to fifty-foot straight line doing this.

  While sitting, lift one foot three to six inches off the ground. Have someone push down on the top of your thigh with one hand, trying to push the foot back down, while you resist strongly for a few seconds (don’t have your partner push down hard enough to hurt). You can also do the pushing yourself. If the foot can be pushed down easily, it’s suspicious for CS. However, similar results can be seen with generalized weakness in FMS.

  About 50 percent of people with CMI and CS have no gag reflex. Use a spoon, pen (not the point), or similar object to test your gag reflex. Put the object all the way into the back of your throat and move it against the right and left wall to test for gagging.

  Dr. Rosner reports that about 50 percent of his patients have a positive Romberg test. With your feet together, stand up straight, close your eyes, and hold your arms straight out in front of your body with the palms up for about fifteen to twenty-five seconds. Have someone watch you. If there is a lot of swaying from side to side, the Romberg test is positive.

  If treatment for CFS/FMS fails to help you and you have a positive MRI for CMI/CS, I would seek a doctor who has a lot of experience treating CMI/CS in people with CFS/FMS. Otherwise, you run the risk of having the CMI/CS diagnosis missed or having surgery that is not effective because it does not remove enough bone to fully relieve the compression of the brain tissue. I have only needed to refer fewer than seven of my more than three thousand patients for evaluation for surgery for these issues; it is rarely needed.

  Ampligen and IV Gamma Globulin

  Researchers are also studying treatment with high doses of intravenous gamma globulin and Ampligen, both of which are immune-function enhancers. These treatments cost many thousands of dollars per year, and I do not think that most patients need them. Ampligen, for example, increases the time CFS patients can walk on a treadmill by only 18 percent (less than two minutes) over placebo. At forty thousand dollars per six months and with unknown long-term risks, this treatment is way down on my list of recommendations (and not even in my top 270 recommended treatments). When the FDA approves it, though, you will hear a lot about it, as there will be a lot of money to be made.

  I do find that weekly intramuscular (versus intravenous) injections of 2 cc of gamma globulin (Gammar) for six weeks (or longer if needed) can often dramatically help patients with recurrent infections (see Chapter 5). Alternatively, one can use 4 cc every other week or even weekly, and this may be even more effective. These low-dose shots, luckily, are not as expensive, and even 1 gram a week for six months has been shown to help.10 I highly recommend them if you have suspected infections that have not otherwise responded to treatment, and save the IV form for cases of genetic gamma globulin deficiencies.

  The Future Is Hopeful

  Although the SHIN protocol can help more than 85 percent of those with CFS/FMS, we are constantly looking for other issues that need to be addressed and treatments that can help. Eventually, we will achieve our goal of finding effective treatment for everyone.

  Important Points

  Check for food sensitivities, then temporarily remove suspect foods from your diet or eliminate them with desensitization techniques such as NAET.

  Consider a VCS vision test at www.chronicneurotoxins.com to look for neurotoxins and treat, if necessary.

  If symptoms worsen and you get severe pain when you tilt your head all the way back, consider CMI/CS.

  Ask your doctor for alternatives to medications that have fatigue as a side effect.

  Treat high blood pressure with Nimotop, Apresoline, or Accupril (and check for sleep apnea). Use natural alternatives instead of cholesterol-lowering medications, when possible.

  If you feel worse between September and April, consider the possibility of seasonal affective disorder.

  Patients have benefited from gamma globulin shots, kutapressin/ Nexavir shots, intravenous nutritional support, and a variety of treatments developed by Dr. Jay Goldstein.

  Consider
detoxification with a far infrared sauna from High Tech Health (see Appendix E: Resources)

  When you can, begin an exercise program. Walking or warm-water swimming exercises are excellent for beginners.

  Get plenty of fresh air and sunshine (without burning).

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

  10

  Am I Crazy? Understanding the Mind-Body Connection

  We have a bad habit in medicine. If a doctor cannot figure out what is wrong with the patient, the doctor brands that patient a “turkey.” Imagine calling an electrician because your lights do not work. The electrician checks all the wiring, can’t find the problem, and says, “You’re crazy. There’s nothing wrong with your lights.” You flip the switches and they still do not work, but the electrician just says, “I’ve looked. There’s no problem here,” and walks out the door. This is analogous to what many CFS patients experience. I apologize for the medical profession’s calling you crazy just because we cannot determine the cause of your problem. It is inappropriate and cruel.

  Fortunately, the Centers for Disease Control (CDC), one of the major governmental agencies responsible for CFS (and other) research, is spending millions of dollars on advertising to dispel the misconception that CFS is all in your mind. It is working hard to teach both doctors and the public that CFS is both a very physical and devastating illness. Hopefully, getting treatment will be easier in the future.

  Research has proven that people with CFS and those without CFS have similar rates of psychiatric disorders.1 What you have is clearly a real and physical illness. And, like most other physical processes—such as diabetes, heart disease, cancer, and ulcers—it has an associated psychological component. In my practice, I frequently see CFS patients who seem to be caught on the horns of an emotional dilemma. These patients find themselves in situations in which they are unable to make a choice between two or more alternatives—for example, between working and having children or between staying with or leaving their spouse. These conflicts come in an infinite variety, and defending yourself against acknowledging a conflict can sap your energy. In my experience, when people start to feel better physically, they find it easier to deal with their emotional issues. However, you do not have to resolve every conflict. If you have something that you cannot settle at the moment, you might find it helpful to simply acknowledge the conflict instead of suppressing it. Tell yourself, “Yes, I have these two areas that are in conflict, and I cannot reconcile them now.” Many people find that after a while, when they simply acknowledge the problem, a solution comes from a new perspective.

  Other people have been convinced that who they are and what they feel and want are not okay, and they tie themselves into emotional knots trying to find a way to get permission to be themselves. For those of you suffering under the illusion that you are not okay, let me put out a simple proposition. If you are not directly harming another person or severely harming yourself, whoever you are and whatever you want to do or be is simply and inherently okay. It might also help you to understand that you may sometimes mistake uncomfortable feelings such as disappointment or sadness for fatigue. Try to be aware of when you do this. There is no such thing as an inappropriate feeling. You have the right to feel whatever you feel. Does this mean that you are crazy? No. It simply means that, like all human beings, you have emotional issues to deal with as part of your growth process.

  Unfortunately, some patients become so frustrated by being told that their CFS is “all in their head” that they are in a catch–22. They feel that if they acknowledge that they also have emotional issues just like everyone else, they are validating the doctors who say that their illness is all emotional. Rest assured, however, that the research study done at my clinic in Maryland, along with research performed at the CDC and elsewhere, further proves that CFS/FMS are real and physical. This is so because people who received the active treatment improved dramatically and those receiving placebo did not. Chronic fatigue syndrome and fibromyalgia are real, physical diseases. If it was “all in your head” the placebo group would have improved as much as the active group. This means that anyone who says it’s all in your head is no longer simply a nitwit. Now they are unscientific nitwits. Give yourself permission to be human. You are no more and no less crazy than anyone else.

  Part of getting well is “lightening up.” There is a traditional Zen metaphor relating to this truth that describes “worry” as an old man carrying a load of feathers. He is nearly crushed under their weight not because they are heavy, but because he thinks that he is carrying rocks. Like this old man, we can often become weighed down by “rocks” of our own imagining. Many of the worries we carry around sort themselves out as soon as we let go of them. Although things may not always work out the way we would like them to (CFS patients often describe themselves as “control freaks”), they usually work out for the best. Because of this, it helps to have or reclaim a sense of humor.

  I am a firm believer in psychological counseling—if and when you feel that it would be helpful. This is especially pertinent in CFS/FMS. As many as 70 percent of you have suffered physical or emotional abuse—as opposed to 15 percent of “healthy” people.2 Counseling is helpful for anybody who is growing and changing. People who are growing frequently come across areas that are difficult and with which it is usual and natural to need help. As is true for any disease, when you treat the physical component, you must also treat the underlying psychological issues. If you do not, the disease will simply manifest itself in another way.

  Although about 12 percent of CFS patients also have depression, only a small minority have depression as the cause of their fatigue. The “depression” caused by CFS/FMS is often simply frustration and stress. This gives you a simple way to distinguish whether you also have depression. CFS/ FMS patients usually have a lot of interests and are frustrated by their lack of energy. However, if you have depression that causes fatigue, you probably have few interests. I discuss ways to lift depression, naturally and with prescription drugs, throughout the book, but specifically in Chapter 8.

  Whether or not you are depressed, you may consider some type of therapist for emotional support and guidance. Be careful whom you choose, however. Make sure “psychotherapist” is one word—not two! Talk to your friends and relatives to find somebody who is good. Your physician may also be an excellent resource. There are many good therapeutic approaches, but my own personal bias is for a therapist who takes a transpersonal psychology or Jungian approach. I have found one physician, Brugh Joy, to be extraordinarily skilled at helping people understand their deep psyches (see Appendix E: Resources). Dr. Joy runs workshops in the mountains of Arizona, and I cannot recommend these workshops strongly enough. To me, they seem more effective than regular counseling. Remember that these workshops do not treat the physical symptoms of CFS/FMS, but rather focus on personal growth. I also recommend the telephone counseling by the Reverend Bren Jacobson (see Appendix E: Resources), who has provided a sidebar on the power of asking for what you want, at the end of this chapter. By using your chronic fatigue and fibromyalgia as a springboard for personal growth, you can find your CFS turning into a blessing. I found this to be the case for me. My CFS/FMS gave me a firsthand understanding of the problem and a powerful incentive to learn how to overcome it. It has also led me into wonderful areas of growth.

  The Mind-Body Connection

  All illnesses have a psychological component. Although the highly stressed executive may have a bacterial infection such as Helicobacter pylori or excess acid causing his or her ulcer, it helps to remove the three telephones from his or her ear while treating the infection and excess acid.

  I find that most people with CFS/FMS are mega-type-A overachievers. As a group, our sensitivity and intuitive abilities are high. We often had low self-esteem as children, and tended to seek approval, sometimes from someone who was simply not going to give it. This, combined with our sensitivity to the feelings of others, ca
used us to avoid conflict and to try to meet other people’s needs—at the expense of our own. Many of us closed off our feelings and our empathetic nature for a while because we were too young to handle their intensity. Because of our need for approval and our low self-esteem, we often drove ourselves to being the best at what we did, or tried to be all things to all people. Not being able to say no because we wanted to avoid conflict or loss of approval led us to feel as though we could not defend our emotional boundaries, and left us feeling drained. We responded to fatigue by redoubling our efforts, instead of resting as our bodies tried to tell us to do. As we depleted our energy reserves—sometimes while feeling great on an adrenaline “high”—we encountered the physical trigger to our disease (“blew our fuse”), whether it was an infection, an injury, childbirth, or something else. This trigger, combined with physical problems such as yeast overgrowth or hormonal deficiencies and, often, a genetic tendency to the disease, set the process in motion.

  What can we do about it? First, we can recognize that all this helped us grow and achieve. One of the fun parts of working with people with CFS/ FMS is that they are especially intelligent and inquisitive. People with diabetes, high blood pressure, or even cancer don’t usually come in having done a computer search on their illness. CFS/FMS patients often have. It is great to work with patients who can teach me, as well as allow me to teach them.

  CFS/FMS forces us to take care of our needs first. After all, you don’t have much choice when taking a shower uses up all of your energy for the day. Taking care of yourself first is an important lesson for you to learn and to continue, even when you get well. Start by easing up on yourself. It’s okay to recognize that you tend to be a perfectionist and maybe even a bit controlling. But we also beat up on ourselves by feeling that we’re never quite good enough. I find it helpful to begin with the following prescription: