From Fatigued to Fantastic!

by Jacob Teitelbaum

  Western blot for Lyme, C4A (Complement 4A—should be under

  3,000) and, to screen further for Lyme, a C3A (if the C3A and C4A are both positive, suspect Lyme infection).

  If you want to have tests to document the problem and with which to monitor treatment, consider an MSH (low), VEGF (low), and MMP9 (high; use 85 to 332 for the normal range). However, I still think that how you feel is the best monitor of your progress.

  Dr. Shoemaker monitors dozens of other tests in his patients as well, but the biggest part of his treatment can be done with what we’ve recommended here.

  What Is the Treatment?

  Below is a simplified form of the treatment protocol Dr. Shoemaker recommends to his patients:

  STEP 1

  Because the liver is able to pull the toxins out of the body and excrete them into your bowel, the trick is to keep the toxins in your bowel so that they go out in the stool. Fortunately, there is a medication called Questran (cholestyramine), which is a powder that acts like a sponge and soaks up the toxins. Dr. Shoemaker recommends that people take one scoop or one packet four times a day. Those who are going to improve with this treatment alone will usually start feeling better within a month, or at least have their vision test go from positive to negative. Insomnia, pain, and spastic colon symptoms can also sometimes improve quickly with this treatment.

  As a caution, be aware that if you have underlying Lyme disease, the Questran will cause a severe flare-up. Because of this, if the Lyme test or both the C4A and C3A tests are positive (which can be seen with Lyme), he recommends treating with doxycycline 100 milligrams twice a day for three weeks followed by the medication Actos, 45 milligrams a day for seven days just before beginning the Questran. Continue the Actos for three more days along with the Questran.

  If the Questran does not eliminate the symptoms and normalize the vision test after one month, continue the Questran for one more month. However, if you are better after one month (two months for Lyme patients), decrease the Questran to twice a day until symptoms resolve, the vision test is normal, and the C4A blood test is normal. Then you can stop treatment. If symptoms then recur, it suggests that something (e. g., persistent infection or being in a “sick building”) is still making neurotoxins. This should then be treated as well.

  The main problem with Questran is that is soaks up everything. This means that you will likely not absorb a lot of the medications or supplements you are taking if they are taken at the same time as the Questran. Because of this, take the Questran on this schedule:

  Take your vitamins and medications (except iron and sleep meds) first thing in the morning. Wait 30 minutes before taking the Questran and then another twenty to thirty minutes until eating breakfast. When lowering the dose to two times a day, skip the a. m. Questran dose.

  Take your next two doses of Questran (each day) as close to a half hour before lunch and dinner as you can. Eating makes your body pour the neurotoxin-containing bile into your gut. Eating a half hour after the Questran puts the medicine right where it needs to be to soak up and bind the neurotoxins.

  Take your last (fourth) dose at bedtime. Take any sleep aids one hour before bedtime so they can be absorbed before you take the Questran.

  Mix each dose of Questran in 4 ounces of water. Drink 12 ounces of water after taking the Questran. Constipation is normally a problem while on Questran, so drink a lot of water and eat a few prunes each day. Also, take high-dose magnesium or vitamin C or other laxatives as needed, since you want to move the bound neurotoxins out of your body. Dr. Shoemaker uses 70 percent sorbitol, 1 to 3 teaspoons three times a day as needed for constipation.

  It is not uncommon for people to have their symptoms worsen—sometimes dramatically—when a chronic infection is first killed. This is called a die-off (Herxheimer) reaction, and was first noted in the early days of treating syphilis. Since then, it has been seen in many infections, including fungal infections. Interestingly, some people also experience this when they begin Questran to remove toxins. Dr. Shoemaker finds that if people’s symptoms worsen while on the Questran, they are more likely to have Lyme disease. He uses a medication called Actos (taken at a dose of 45 milligrams a day for seven days before restarting the Questran and continuing for three days after resuming Questran), which can decrease the die-off reaction. Because people with CFS/fibromyalgia tend to be sensitive to medications anyway, you may choose to begin with one teaspoon of Questran once or twice daily for one to two days and then increase the dose to decrease the risk of getting a severe die-off reaction.

  Although the Questran has about 1 teaspoon of sugar per scoop, it is still okay to use in this situation. Using unsweetened cranberry juice (add stevia) instead of apple juice, or simply mixing it with water if even minimal sugar is a problem will decrease the amount of sugar you are getting as well. You can also get Questran lite with NutraSweet. This first step with Questran will be adequate treatment for only 9 percent of patients, but is critical for the following steps to work. If the patient’s symptoms persist despite the Questran, Dr. Shoemaker then recommends doing each of the treatments in the order below until he or she feels well.

  STEP 2

  If the nasal swab culture is positive for a coag-negative staph bacteria resistant to at least two of the antibiotics tested against it, Dr. Shoemaker recommends that his patients be treated with the following three antibiotics simultaneously for one month:

  Rifampin, 600 milligrams each morning with food

  Bactroban nasal cream or spray, applied deep in both nostrils three times a day

  Either doxycycline (100 milligrams two times a day), Ceftin (250 milligrams two times a day), or Cipro (500 milligrams two times a day), depending on what the test shows that the infection is sensitive to.

  Stay on Questran twice a day during this stage as well, and recheck the nasal culture a week after discontinuing the antibiotics. Around 50 percent of patients will be feeling better by this stage.

  STEP 3

  If you are not adequately improved, Dr. Shoemaker recommends that you look for wheat (gluten) allergies. Do this by checking blood tests for anti-gliaden IgA and IgG antibodies and transglutaminase IgA antibodies. If the transglutaminase IgA antibodies are positive, you have celiac sprue (a genetic wheat allergy) and need to see a gastroenterologist. If this test is negative, but either the anti-gliaden IgA or IgG antibodies are positive, you must avoid gluten (wheat products) for six months. This is a difficult diet; a dietitian can show you how to construct gluten-free menus. In addition, Dr. Shoemaker believes that this condition is usually associated with a mold-contaminated indoor exposure. He recommends a test called the EPA Relative Mold Index (ERMI), available from the Mycometrix Company in New Jersey for about three hundred dollars a kit. Use it to check your home and work space and other places where you spend a lot of time. If the test scores positive (over 10), it suggests that you may be suffering from sick-building syndrome. If so, there are four key steps to treatment:

  Remove yourself from the contaminated environment.

  Remove the source of the moisture causing the mold overgrowth (e. g., fix any leaks).

  Decontaminate with the help of mold-removal experts.

  Install HEPA filtration.

  Once these are completed, it is reasonable to repeat the Questran as in Step 1. If the C4A level and symptoms stay low after this, you are in good shape. If they go back up, it suggests persistent toxic exposure.

  STEP 4

  If symptoms persist, check a matrix metallo-proteinase-9 (MMP-9) and VEGF blood tests. If the MMP-9 is between 332 and 1,500, Dr. Shoemaker treats with Actos (a diabetes medicine that can also be used in nondiabetics) at a dose of 45 milligrams a day plus a low amylose diet (low in simple carbohydrates) for one month. If the MMP-9 is higher than 1,500, he treats for two to three months. If the MMP-9 is normal, or symptoms persist after this treatment and normalization of the MMP-9, he then goes to Step 5.

  STEP 5

  If the VEGF is under 31,
Dr. Shoemaker continues the Actos and adds fish oil (1 to 2 tablespoons a day; I recommend Eskimo-3 or the Omega-3 brands of fish oil, which are mercury free) and creatine (take 1.5 grams a day for every ten pounds that you weigh) for one more month.

  STEP 6

  In less than 10 percent of patients, there is a persistent C4A elevation and symptoms persist. In this group Dr. Shoemaker uses injections of a hormone that stimulates new blood-cell formation called Procrit, giving 8,000 units twice a week for five doses. If you still do not feel better, specialized testing to look for neurologic disorders may be necessary. If you initially improve on Procrit and then relapse, he suggests resuming Procrit at a dose of 4,000 to 6,000 units each three to five days as needed.

  Although Procrit raises the low red blood cell mass seen in CFS, this is not why it works here. Levels of Procrit need to stay elevated to suppress elevated C4A, and giving it weekly is not frequent enough. In fact, a study giving the injections weekly improved the red blood cell mass without improving symptoms of CFS.4 However, Dr. Shoemaker’s twice-weekly approach normalized C4A levels and markedly decreased brain fog in CFS.5

  For more information on Dr. Shoemaker’s work and to do the VCS vision test, visit his Web site at www.chronicneurotoxins.com.

  Seasonal Affective Disorder

  If your fatigue is a problem mainly from October to May, is less pronounced on sunny days, and is associated with increased sleep, weight gain, and carbohydrate craving during the winter, you may suffer from sunlight deprivation. This malady is known as seasonal affective disorder (SAD), or the winter blues.

  SAD is treatable with a light box, which is available by mail order (see Bio Brite in Appendix E: Resources). Use a 10,000-lux box positioned at a forty-five-degree angle in relation to your face and about eighteen inches away. Spend thirty to forty-five minutes in front of the box every morning from September through May. Add a half hour at night, if necessary. Experiment to find the times of day and session lengths that feel best to you. You do not have to sit still in front of the box, but can do table work such as reading or writing.

  If you have trouble waking up in the morning, attach a bright (about 250-lux) bedside lamp to a timer and program it to turn on two hours before your alarm is set to go off. Portable light visors are also available by mail order. Most patients find that it takes one to six weeks of light treatment to see any results.

  Serotonin deficiency has been put forward as a possible cause of SAD. Serotonin is a neurotransmitter that is particularly connected with the process of sleep. Medications that raise the serotonin level, such as fluoxetine (Prozac), have been shown to be effective against SAD.6 In addition, as discussed in Chapter 6, vitamin D from sunshine can have major immune system and other benefits.

  Medications

  Many medications can cause fatigue as a side effect. If you are on a medication and your fatigue has been worse since you started taking it, talk to your physician about alternative measures or about just stopping it. This is especially important if you are on cholesterol-lowering medications (as discussed in Chapter 8) or high blood pressure medications. If on the latter, let’s discuss which ones are likely to make you feel better instead of worse.

  Interestingly, a blood pressure–raising enzyme called angiotensin-converting enzyme (ACE) has been found to be elevated in some CFS/ FMS patients.7 Despite this, their blood pressure may still be low, due, for example, to underactive adrenal glands. According to some physicians, CFS/FMS symptoms and depression have improved in a few patients who were given the ACE inhibitor captopril (Capoten) for hypertension. Other doctors have found that some CFS/FMS patients improved with nimodipine (Nimotop) or amlodipine (Norvasc), calcium channel blockers that relax the blood vessels to allow more blood and oxygen to get to the brain and heart. If your blood pressure is high, you might consider a trial of Nimotop or, if that is too expensive, Norvasc, followed by a trial of hydralazine (Apresoline) and then a trial of quinapril (Accupril) or captopril (Capoten), for two weeks each, to see which feels the best to you. If your ACE levels are high, it may also suggest the presence of antibiotic-sensitive infections within your cells (as occurs in another immune illness called sarcoidosis), and a trial of antibiotic therapy as discussed in Chapter 5 may be warranted. More importantly, if you have CFS/FMS and high blood pressure, you are at high risk of having sleep apnea (see Chapter 3).

  Detoxification

  Many toxic substances, such as mercury from dental fillings, monosodium glutamate (MSG), pesticides, and others too numerous to list, can contribute to CFS/FMS and keep you from healing properly. Many practitioners use detoxification techniques to rid your body of these toxins. Detoxification may be as simple as sitting in a sauna for thirty to sixty minutes a day. Be sure to drink plenty of water while in the sauna and rinse off immediately afterward so that the skin does not reabsorb the toxins. The dry heat also helps tight muscles to relax. If you decide to invest in a home sauna, especially if you are chemically sensitive, the far infrared sauna made by High Tech Health is an excellent choice (see Appendix E: Resources). For more information on detoxification, I recommend Dr. Majid Ali’s book The Canary and Chronic Fatigue.

  The Goldstein Protocol

  Dr. Jay Goldstein, a well-known researcher working on brain chemistry and CFS/FMS, has come up with a list of recommended treatments that may be helpful. Because the agents he uses act directly on the disordered blood flow in the brain, Dr. Goldstein finds that patients generally know what effect each medication will have within one hour—and even within minutes for some agents.8 He has several books that may be too technical for the casual reader; however, the determined reader will find information that can sometimes help not only brain fog, but also pain and fatigue. A newsletter summarizing how to use his treatments is also available at www.vitality101.com. Your physician may help you find relief using the Goldstein protocol.

  Guaifenesin

  Paul St. Amand, an endocrinologist at UCLA, has proposed that a defect in eliminating/metabolizing phosphates is the underlying cause of fibromyalgia. Dr. St. Amand finds that using an over-the-counter medication called guaifenesin helps eliminate these phosphates, resulting in pain relief. I have found that a small percentage of patients improve with this treatment approach, but most do not. My main concern with the treatment is that you cannot use anything with natural salicylates (aspirin compounds) while on it—eliminating virtually all herbals and even makeup. It takes many months to work, and people often experience flare-ups during treatment.

  If not for having to eliminate all herbals, I would add this to my protocol. Nonetheless, it can help and is a very inexpensive approach that people can do on their own. Dr. St. Amand’s book What Your Doctor May NOT Tell You About Fibromyalgia explains how to follow his protocol, and more detailed information is also available in the From Fatigued to Fantastic! notes at www.vitality101.com.

  Multiple Chemical Sensitivity Syndrome

  I believe this syndrome is an extreme subset of chronic fatigue syndrome. In multiple chemical sensitivity syndrome (MCS), the body has given up and is reactive to almost everything in the environment. Many, if not most, CFS/FMS patients have multiple allergies and sensitivities to environmental chemicals and medications. However, while this is common, it is not MCS.

  Patients with MCS cannot live in a normal house because they can become deathly ill if a new carpet is put in, if the walls are painted or wallpapered, or if pesticide is sprayed. They can become ill just from washing the dishes or reading a book. They can react negatively to any or all of the thousands of chemicals with which we normally come in contact in our daily lives.9 People who have this extreme problem do have treatment options available to them, however. To learn more, you may want to read Tired or Toxic? by Sherry Rogers, M. D. (see Appendix E: Resources). In addition to using the SHIN protocol, you may want to consult NAET practitioners and environmental medicine physicians.

  Chiari Malformations and Cervical Stenosis

  Rarely, CFS/FMS
can be caused by compression of the spinal column or the base of the brain. Neurosurgeon Mike Rosner found that two unusual malformations of the skull or spinal canal could compress the brain and/or spinal cord, causing symptoms that mimicked those of CFS/FMS. When the compression was surgically released, CFS/FMS patients with these malformations sometimes saw a decrease in their pain and fatigue.

  The Chiari 1 Malformation (CMI) is a condition in which the back of the skull is underdeveloped, compressing the cerebellar tonsils located at the back of the brain. These tonsils are then squeezed out of the opening at the base of the skull by at least 3 to 5 millimeters (0.12 to 0.2 inch). This is called tonsillar herniation. As with CFS/FMS, CMI can be genetic. There are also situations in which the brain stem is compressed without tonsillar herniation. The second malformation is called cervical stenosis (CS) and is a compression of the spinal cord in the neck because the spinal tube is unusually narrow. Both can cause symptoms that mimic those of CFS/FMS.

  While it is not known how common these problems are, it is a current topic of debate. Based on magnetic resonance imaging (MRI) scans as read by radiologists, CMI and CS are not much more common in people with CFS/FMS than in healthy people. On the other hand, the physical examinations of people with CFS/FMS often show abnormalities that are also seen in CMI or CS. Because of these two seemingly opposite findings, some people suggest that CMI and CS are rare in people with CFS/FMS, while others believe that they are common.