From Fatigued to Fantastic!

by Jacob Teitelbaum

  Nonetheless, these infections are common in CFS, and the available IgG test may still offer useful information. Unfortunately, despite all of the data to the contrary, most doctors are not familiar with the research and still mistakenly think a negative IgM antibody test confirms that there is no active infection. Because most physicians are not aware of this research, and it may be important for your doctor to know about, I invite the more scientifically oriented reader to read the sidebar “Research on Viral and Antibiotic-Sensitive Infections in CFS/FMS.” Getting past the misconception that these infections are not active if the IgM test is negative is important, as we finally have treatments that are effective against many of these infections. Let’s look at some of the more important infections.

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  Research on Viral and Antibiotic-Sensitive Infections in CFS/FMS

  A study by Dylewski et al in the New England Journal of Medicine demonstrates that in immune-compromised patients, as occurs in CFS/FMS, active infections correlate with elevations in IgG antibodies without elevations of IgM antibodies and that a lack of elevation of IgM is not useful in these patients as a way to rule out active infection. A high clinical suspicion must be maintained, and implementation of anti-infective treatment should be based on elevated IgG levels.22

  In addition to mycoplasma, numerous studies have also demonstrated other bacterial and viral infections such as EBV, CMV, HHV–6, and enterovirus in CFS and FMS patients that cause or contribute to the symptoms. The research also demonstrates that these infections are present and that an active infection correlates with an elevated IgG antibody, despite the lack of IgM antibodies.23–33 As with mycoplasma infections (see Chapter 5), because these infections are generally not acute but rather reactivation of an old infection, an elevation of IgM antibodies is typically Not seen with active infections of EBV, CMV, HHV–6, Borrelia (Lyme), and enterovirus.23–33 Because of the immune dysfunction seen in CFS, there may even be a lack of IgG antibodies present despite the presence of an active infection.30,34,35

  Immune-suppressed patients have also been shown to be helped by antiviral therapy in a number of studies.36–40

  It is clear that multiple infections are present in CFS/FMS patients. For example, one study found that 52 percent of CFS patients had active mycoplasma infection, 30.5 percent had active HHV–6 infection, and 7.5 percent had chlamydia pneumonia infections versus only 6 percent, 9 percent, and 1 percent of healthy people, respectively. They conclude: “The results indicate that a large subset of CFS patients show evidence of bacterial and/or viral infection(s), and these infections may contribute to the severity of signs and symptoms found in these patients.”41

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  HHV–6

  A reactivated HHV–6 viral infection is present in many patients with CFS. A study in the Annals of Internal Medicine found that 70 percent of patients with CFS had active HHV–6 infection.42 In another study of HHV–6 in CFS patients, 89 percent with very high HHV–6 IgG antibody levels of 1: 320 and above were found to have active infections by cell culture. To compare, most healthy adults have levels of 1: 40 to 1: 160. Though not all of the studies were able to document the infections, as CFS expert and Harvard professor Anthony Komaroff notes in his recent review, “the great majority of studies have found evidence of active replication of HHV–6 more often in patients with CFS than in healthy control subjects.”43

  When HHV–6 is present, it seems to affect the immune system’s natural killer cells, which are critical in fighting infections and are also often malfunctioning in CFS. Natural-killer-cell function is described in what is called lytic units—which means the ability of cells to lyse, or break down, foreign invaders. An average person has a lytic unit level of 20 to 250, with more than 80 percent of healthy people having more than 40 units. However, in people with CFIDS, the mean natural-killer lytic-unit level is just 12 units. With your immune system so low, the reactivated HHV–6 can then also cause reactivation of the Epstein-Barr virus. In addition, both HHV–6 and EBV can suppress immune function, and HHV–6 can also suppress your body’s ability to fight fungal/yeast infections.

  Until recently, there was no readily available treatment for HHV–6. Even though it is related to other herpes viruses, HHV–6 is resistant to acyclovir (Zovirax), valacyclovir (Valtrex), famciclovir (Famvir), and the other antivirals that are commonly used for herpes infections. Fortunately, there is a new and promising oral antiviral called Valcyte that has been shown in early studies to be beneficial in CFS patients who have both HHV–6 and EBV viruses. Unfortunately, this drug can have significant side effects, although it causes no problems in most CFS patients, and is expensive. If you have an open-minded doctor and are interested in exploring Valcyte treatment, the information in the sidebar on Chapter 5 may be helpful to your physician.

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  Diagnosing and Treating Reactivated HHV–6 Infections in CFS

  In a recent study by Professor Jose Montoya of Stanford University, CFS patients were treated with the new antiviral drug Valcyte if they had elevated IgG tests for HHV–6 and EBV and had at least four of the following symptoms—impaired cognitive functioning, slowed processing speed, sleep disturbance, short-term memory deficit, fatigue, and symptoms consistent with depression. In their first study of twelve patients, nine out of twelve (75 percent) patients “experienced near resolution of their symptoms, allowing them all to return to the workforce or full-time activities. In the nine patients with a symptomatic response to treatment, EBV VCA IgG titers dropped from 1: 2560 to 1: 640, and HHV–6 IgG titers dropped from a median value of 1: 1280 to 1: 320…serious adverse events were not observed among the twelve patients.”44

  I had the pleasure of speaking with Professor Montoya in January 2007 to get further details on his treatment protocol. In CFS patients whose symptoms began with a flu-like illness and who have an EBV VCA IgG antibody level of at least 1: 640 plus an HHV–6 IgG antibody of at least 1: 640 (or 1: 320 if the EBV is at least 1280), he treats as follows:

  1. Valcyte 900 milligrams two times a day is given for three weeks, then

  2. Valcyte 900 milligrams one time a day is given for twenty-three weeks.

  To monitor for bone marrow, liver, and kidney toxicity (which he has not found to be a problem in CFS patients) he does the following testing:

  CBC and chemistries (BUN, Cr, ALT, AST) twice a week for three weeks, then once a week for three weeks, then every other week for three weeks, and then monthly while on the treatment.

  He avoids prescribing Valcyte for those with severe neuropathic (nerve) pain in their hands as well as in patients with inadequate kidney function or who have white blood cell counts of less than 3,500, as a potential toxicity is bone marrow suppression. He found that all patients who improved had an initial flare of their symptoms from about the second to the fourth weeks of treatment—often leaving them housebound for that two-week period. Most noticed significant improvement beginning at about three to four months into treatment. The patients I have spoken with who have taken it have been very pleased, but a few have developed recurrent symptoms when they stopped the medication after six months and are considering repeating the treatment. Though there is the potential for toxicity from this medication, current experience suggests that this has not been a major problem in the CFS population.

  This treatment is promising, with the main limiting factor now being its cost. Sixty 450-milligram tablets (a one-month supply) costs about two thousand dollars from Consumers Discount Drugs (1-323-461-3606) and is available from Canada by mail for $1,500. This makes the six-month cost $10,000 to $13,000.

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  EBV AND CMV

  The roles of EBV (Epstein-Barr virus) and CMV (cytomegalovirus) in CFIDS are not clear. It is not uncommon for antibody levels of these viruses to be elevated in people with chronic fatigue syndrome. However, we do not know if this elevation reflects an old inactive infection or an ongoing infection with these viruses. Given the findings with HHV–6 and the dr
op in EBV antibody levels after treatment, I am inclined to believe that reactivation is occurring with these viruses as well. As discussed in reference to HHV–6 infection, I have not found the antiviral Valtrex to be helpful in treating CFS symptoms and no longer use it. Valcyte still holds much greater promise and is effective against HHV–6, CMV, and EBV. As the HHV–6 seems to trigger reactivation of EBV, it is possible that suppressing the HHV–6 infection is enough to allow the body to also overcome the EBV infection.

  In addition to Valcyte, there are also several other treatments that may be helpful in fighting CMV and HHV–6.

  Thymic protein A, marketed under the brand name Pro Boost, is an excellent natural immune stimulant. Although not a hormone, thymic protein A mimics the natural hormone produced by the thymus, the gland that stimulates the immune system. I find it to be extraordinarily effective in fighting common acute infections of any kind that seem to pop up, and recommend that it be in everyone’s medicine cabinet. In fact, whenever my kids get a cold, the first thing they say is, “Dad, where’s the white powder?” (the Pro Boost).

  Although taking it for one to three days will quickly eliminate most acute infections, for the chronic infections of CFIDS, one packet three times a day for three months is needed. In one study, this dropped EBV IgG levels by 70 percent after three months in CFS patients.

  Extracts of maitake mushroom have also been shown to increase natural-killer-cell function.

  Lysine is an amino acid (one of the building blocks of protein) that inhibits oral and genital herpes viruses by depleting arginine, another amino acid that the virus needs to grow. It is not known whether lysine also inhibits EBV, HHV–6, or CMV, but these viruses are all members of the herpes family. Lysine is safe and inexpensive. The recommended dosage is 1,000 milligrams three times a day. Arginine is used by the body to make both nitric oxide and growth hormone. Decreasing arginine may therefore also decrease excessive nitric oxide activity in CFS. The downside is that it may also decrease growth hormone—which is too low in CFS. Because of this, it may be reasonable to take lysine for six months, but I would not use it on a long-term basis in CFS.

  Another treatment that may be helpful is vitamin C. High doses of 15–50 grams of vitamin C, administered intravenously, are often dramatically helpful for CFS when given as part of intravenous nutritional therapy your doctor may administer (page 364).

  In addition, your clotting system may be activated by several infections, making it difficult to eliminate the viruses. Using the anticlotting treatment that we discuss later (see page 149) can also make it easier for your body to eradicate infections.

  ANTIBIOTIC- SENSITIVE INFECTIONS SUCH AS MYCOPLASMA, CHLAMYDIA, AND LYME DISEASE

  Research by Dr. Garth Nicolson and his wife, Nancy L. Nicolson, has shown that other antibiotic-sensitive infections, including mycoplasma and chlamydia, can be important in CFIDS. These microorganisms can cause persistent infections, and have similar characteristics. Mycoplasma are a type of ancient bacteria that lack cell walls and are capable of invading a number of types of human cells. They can cause a wide variety of human diseases. These organisms can cause the types of symptoms seen in people with CFIDS and, according to Dr. Nicolson, tend to be immune-suppressing. Unfortunately, they cannot be readily cultured in a culture dish.

  In medicine, we have a bad habit of focusing on things that are easy to test for and making believe that things that are hard to test for do not exist. Because of this, bacterial infections such as pneumonia, bladder infections, and skin infections—in which one bacterium on a cell dish will rapidly turn into millions by the next day and be visible to the human eye—get all our attention. Unfortunately, mycoplasma and chlamydia, which cannot be easily cultured, tend to be ignored.

  Although mycoplasma and chlamydia are common in the environment, they usually are fairly noninvasive. It may simply be that once your immune system is weakened, these infections can get into cells where they don’t belong. When that happens, even some of the common ones that are normally considered noninfectious can wreak havoc. When these infections reproduce slowly, they tend to be low-grade and chronic, as opposed to the acute and more prominent symptoms seen with bacterial and viral infections that multiply and divide rapidly.

  Interestingly, the Nicolsons found that in patients with chronic fatigue syndrome or fibromyalgia, approximately 70 percent (144 out of 203 patients) had a positive PCR test for at least one—and usually several—species of mycoplasma or chlamydia. When the Nicolsons tested seventy healthy patients, only six (less than 9 percent) were positive for any of the mycoplasma species. This is a highly significant difference. Only two of these seventy healthy people were positive for mycoplasma fermentans. Similar results have been published by other doctors.

  It is likely that there is a group of underlying problems and not a single one that triggers CFS/FMS. This applies to infections as well. This is why we see positive tests for both viral and mycoplasma/chlamydia infections in so many people with this disease. For mycoplasma alone, when the Nicolsons checked for four different types of mycoplasma, more than half of the ninety-three CFS patients who were positive had more than one type of infection. More than 20 percent of them tested positive for three out of the four mycoplasma infections. The more infections they tested positive for, the worse their symptoms were and the longer they had had CFS/FMS. Unfortunately, testing for these antibiotic-sensitive infections is not reliable in most people. Although in research settings one can quickly run a PCR (polymerase chain reaction), a test for the DNA of different organisms, my experience is that blood samples sent by mail are not fresh enough to be useful. In addition, there are many other antibiotic-sensitive infections for which we have no good testing. These include organisms such as Lyme and babesiosis. Because of this, I am starting to believe that it is better to simply treat with antibiotics based on symptoms, instead of using expensive lab tests that have limited reliability. The early data, however, suggest that finding an abnormally high elevation in the IgG antibody levels for these organisms may also suggest active infection. Hidden dental infections can also be problematic.

  Lyme disease is especially problematic, as there is no gold standard test. I suspect that as many as half of the people who have Lyme infections have negative tests and, conversely, that if you randomly check Lyme tests, as many as half of the people who test positive do not have Lyme disease. This creates enormous confusion, as CFS/FMS symptoms are similar to those of Lyme disease. Because of this, many people desperately looking for an explanation for their symptoms who have found one of many Lyme tests to be positive cling to this diagnosis as they seek an explanation for their disability. Many of these patients feel better on antibiotics and take this as confirmation. Indeed, many excellent physicians feel that the large majority of CFS/FMS patients have Lyme disease. The majority of physicians only believe a Lyme infection is present if a test called the western blot is positive—ignoring that this test is negative in a large percent of those with Lyme disease.

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  Help for Dental Infections

  People with CFS/FMS seem especially vulnerable to cavities. This usually comes from the dry mouth, which can be caused by CFS/FMS as well as medications (especially Elavil). To treat dry mouth, add fish oil and the vitamin powder to increase saliva production and eliminate medications that cause dry mouth. Some patients will get “cavitations” in their jaws, which can serve as hidden infections. Cavitations are poorly understood, so I asked Dr. Stephen Hubert, a Maui dentist specializing in dental infections, to give us more information about them.

  Cavitations are groups of infections caused by remnants of roots of extracted teeth and the periodontal ligament. They are commonly associated with “wisdom tooth” extractions, infected “root canalled” teeth, and even apparently healthy teeth that have undergone root canals. These incomplete extractions may leave behind potent toxins such as hydrogen sulfide and methylthiol.

  Cavitations can be diagnosed with a good
panoramic X-ray, and treatment consists of surgical excision and removal of tooth fragments and the associated connective tissue. A hard tissue laser is often used in this surgery because of its ability to sterilize the surgical site as it “ablates,” or destroys, the infected tissue.

  A significant source of chronic dental inflammation is infection under the gum known as “periodontal disease.” This disease is diagnosed by microscopic analysis of biofilm samples from tooth root surfaces under the gum, especially any inflamed bleeding pockets. Many biological dentists have a Phase Contrast Microscope that allows identification of potent pathogens and the accompanying high number of white blood cells that mark this condition. This infection can be eliminated with a series of antiseptic, under-the-gum irrigations using a Waterpik device fitted with a special connector. Ozone/oxygen can be applied directly to the anaerobic environment under the gum, which also helps kill the infections.