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To show how severe the lack of awareness of proper diagnosis is of these infections in the medical community, the U. S. legislature passed a resolution strongly recommending that physicians become aware of the lack of sensitivity of current tests for Lyme disease and consider appropriate treatment based on clinical grounds. It notes: “The committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition…. The definition is reportedly misused as a standard of care for…medical licensing hearings.” Sadly, even this law has been ignored by some physicians.
Given all of the above, we simply do not know for sure if many people with CFS also have Lyme disease. If you had a history of tick bite and a bull’s-eye rash and have fatigue or pain, I consider it reasonable to treat for possible Lyme disease even if the tests are negative. The approach I currently recommend (until we have better testing) is to simply acknowledge that the testing used in CFS/FMS patients for antibiotic-sensitive infections in general is unreliable, that the research shows that these infections are common in CFS/FMS, and that the research also shows that many patients improve when given antibiotics such as azithromycin (Zithromax) or doxycycline—even if testing is negative. Given this situation, it is reasonable for physicians to use their clinical judgment and treat with antibiotics when appropriate, even if there is no test to confirm the type of infection.
Should your doctor also come to this conclusion, you should be informed of an approach to treating possible Lyme disease and other antibiotic-sensitive infections that has worked for many patients.
Treating the Hidden Antibiotic-Sensitive Infections
As we have discussed, testing for these infections is difficult and, therefore, it is often necessary to simply treat based on clinical symptoms. Because of this, I am more likely to treat with antibiotics if any of the following are present:
A chronic or recurrent fever over 98.6°F—even 99°F
Chronic lung congestion
Recurrent scalp sores that scab
A history of bad reactions to several different antibiotics (people misinterpret the die-off reaction as being an allergic reaction)
A history of CFS/FMS transiently improving in the past when given an antibiotic
Severe vertigo (when you feel like you or the room is spinning in a circle, which is not to be confused with the disequilibrium experienced by most of us with CFS)
People with these symptoms seem to be more likely to have infections that respond to special antibiotics. Fortunately, Lyme disease, mycoplasma, and chlamydia infections, and many other infections that are difficult to test for in CFS, are often sensitive to the right antibiotics. The antibiotics most likely to affect these organisms are the following:
Doxycycline or, preferably, minocycline, usually at dosages of 100 milligrams twice a day. These two antibiotics are in the tetracycline family. They are effective against a number of unusual organisms (for example, Lyme disease). They sometimes cause some stomach upset, so if this occurs, either take the medicine with food and a full glass of water or lower the dose. These antibiotics should not be given to children under eight years old because they can cause permanent staining of the teeth.
Ciprofloxacin (Cipro), usually 500 to 750 milligrams twice a day. Although expensive, this is usually a well-tolerated antibiotic. It has a wide range of effectiveness against a large number of organisms. Cipro has an additional benefit for men, as it also treats any hidden prostate infections, as does doxycycline. You should not take oral magnesium or any supplement containing magnesium within four to six hours of taking Cipro or you may not absorb the Cipro as completely. A small percentage of the population has a genetic defect that prevents them from breaking down Cipro. In this group, taking Cipro can actually trigger FMS, and this family of antibiotics should be avoided if you have a family member who developed fibromyalgia after taking Cipro.
Azithromycin (Zithromax), 250 to 600 milligrams a day taken with food, or clarithromycin (Biaxin), 500 milligrams twice a day, taken on an empty stomach. These antibiotics are in the erythromycin family. Zithromax tends to be fairly well tolerated. Biaxin is more likely to cause a bit of nausea in some patients, but it is usually also well tolerated. These two may work against infections missed by doxycycline and Cipro. Begin with this antibiotic if you have scalp or skin sores or scabs.
Although all of these antibiotics can be effective, it is not uncommon for infections that are sensitive to the erythromycin antibiotics (Zithromax and Biaxin) to be resistant to tetracycline antibiotics (doxycycline, minocycline) and Cipro, and vice versa. Therefore, it is best to try either doxycycline or Cipro first. If they are not effective, then try the Zithromax or Biaxin. The antibiotic should be taken for at least six months. If there is no improvement in four months, switch to the other antibiotic or simply stop the treatment.
As mentioned earlier, I am more likely to use antibiotics for CFS patients who have temperatures over 98.6°F, even if they are only 98.8°F (I consider 98.8°F a fever because CFS/FMS patients usually have low body temperatures). If you do have low-grade chronic temperature elevations, be sure that you monitor your temperature during treatment. If your temperature drops with the antibiotic, it suggests that you do have one of these nonviral infections and that the antibiotic is helping. This would encourage me to continue the antibiotic trial—even if it takes up to eighteen months to see an improvement in your symptoms.
If you are clearly better, you should probably take the antibiotic for at least six to twelve months. It can then be stopped. If symptoms recur, keep repeating six-to eight-week cycles until the symptoms stay gone. It may take several years of treatment for the infection to be totally eradicated. To put this in perspective, this is how long children often take antibiotics for acne—which, unfortunately, if not taken with antifungals, can lead to yeast overgrowth and possibly trigger CFS. You should therefore take two tablets of the herbal Anti-Yeast mix twice a day while on the antibiotic. It is a good idea to take an acidophilus supplement as well. Also, be aware that birth control pills may be ineffective while you are taking antibiotics, so be sure to use an alternative form of birth control.
It is very common to get what is called a die-off (Herxheimer) reaction that includes chills, fever, night sweats, and general worsening of CFS/ FMS symptoms when the antibiotic first kills off the infection. Many people mistakenly confuse these with an allergic reaction. These symptoms can be severe and can last for weeks. Stop the antibiotic and let the die-off reaction subside. Then resume the antibiotic at a much lower dose (e. g., 25 milligrams of minocycline every other day) and work the dose up slowly. The Nicholsons, who pioneered this treatment of antibiotic-sensitive infections, note that if you have been sick for years, it is unlikely that you will recover in less than one year of treatment, so you should not be alarmed by symptoms that return or worsen temporarily. In addition, some other unusual infections may require the simultaneous use of multiple antibiotics.
One more antibiotic-sensitive infection deserves mention. If spastic colon symptoms persist after treatment for yeast and parasites, consider treating for SIBO (small intestinal bacterial overgrowth), which is common in CFS/FMS and which is another key cause of bowel symptoms. Research has shown that treating empirically with the antibiotic Rifaximin for ten days can result in long-lasting improvement of the symptoms of irritable bowel syndrome/spastic colon.45
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What to Do When All Else Fails–the Role of the Blood-Clotting System
Although more than 85 percent of CFS/FMS patients improve by using the SHIN protocol, we are constantly looking for new treatments. Using the blood thinner heparin has been able to help half of those who failed all other treatments. We do not begin with this treatment because it carries more risk. Fortunately, none of our patients have developed problems on it.
Work done by David E. Berg, director of Hemex Laboratories in Phoenix, has shown that a number of infections can trigger the blood-clotting
system to become active, thus setting up a low-level chronic clotting cascade. Some of the infections that can do this are HHV–6, mycoplasma, CMV, and chlamydia, which can trigger production of antibodies against clot-protective proteins on the inner surfaces of blood vessels, called antiphospholipid antibodies. One of these is called beta-2-glycoprotein 1. This then triggers the clotting cascade. Once the clotting system is triggered, the body produces what are called soluble fibrin monomers (SFMs). The theory is that these SFMs are like long, thin sheets of a Teflon-like substance, similar to a scab that covers a cut, but microscopic in size, and that these sheets then coat the blood vessels. This makes it hard for nutrients and oxygen to get in and out of the blood vessels to the cells where they are needed.
Why Would an Infection Trigger the Clotting System?
Many infectious organisms do not survive well in the presence of oxygen. These are termed anaerobic. Mycoplasma (which can be anaerobic) and other organisms may trigger the clotting system to create a shell, which then acts like a suit of armor, protecting them from oxygen, your body’s defense system, and antibiotics. This would explain why these infections may have evolved a way to trigger the clotting mechanism. The fibrin armor preventing antibiotics from getting to the infection could also explain why some people with these infections may not respond to antibiotics. Indeed, some physicians have found that the antibiotics work better once someone has been on a blood-thinning medication, which may dissolve the armor.
This Is an Interesting Theory, but How Do We Know This Is Going On?
Mr. Berg and others have done studies showing that the results of blood tests to look for these clotting changes are abnormal in CFS/FMS patients, whereas they are normal in most other people. Results of two of the tests in the panel must be abnormal for the result to be considered positive. When these tests were performed, fifty of fifty-four CFS/FMS patients had abnormal results (that is, only 7.4 percent of the patients had normal blood test results). In healthy people, twenty-two out of twenty-three (96 percent) had normal blood test results. This means the test is both sensitive and specific, picking up people with CFS and excluding healthy people. Almost everyone with CFS whom I have tested has turned out to have these clotting changes, although I personally have not tested healthy people to see if this also occurs with them. Interestingly, many people with unexplained infertility also test positive for these changes, as do many people with multiple sclerosis, Parkinson’s disease, autism, inflammatory bowel disease, and some other illnesses.
These results suggest that these tests can be helpful in deciding whether to treat people with CFS/FMS with blood thinners. On the other hand, when a test is positive in 93 percent of patients and costs about three hundred fifty dollars, a good argument can also be made for simply treating without doing the test. Your doctor will determine whether he or she feels comfortable with empirical treatment.
Treating the Blood-Clotting System
First of all, it is important to note that using heparin injections as a treatment for CFIDS/FMS is still controversial and is considered by some to be experimental. I much prefer to use treatments that are as safe as possible. Although there are risks of potentially fatal bleeding or drops in platelet counts (the cells that cause your blood to clot), we have not seen or heard of any serious toxicity occurring in the thousands of CFS patients who have been treated with heparin. In addition, I find that about half of my patients with the most severe and refractory symptoms of CFS/FMS get better with this treatment.
While a patient is on heparin, I perform tests to measure blood thinning frequently during the first month of treatment. If the patient is not better and the partial thromboplastin time (PTT) test is still within the normal range, I will increase the prescribed heparin to as much as 8,000 units twice a day. To put this dosage in perspective, most hospital patients who require heparin receive 1,000 units per hour (a total of 24,000 units a day) intravenously. Those with chronic fatigue syndrome and fibromyalgia take heparin by subcutaneous injection using an insulin syringe for the first six weeks of treatment. Then, some patients can switch to a nose spray or sublingual form.
If the heparin is going to help, you’ll start to feel better at about the ten-to fourteen-day point. I then consider adding doxycycline (a tetracycline) or antiviral therapies based on symptoms or lab results for six to twelve months. At the end of four to twelve months, if the heparin helps, we try to taper off the heparin because it is a powerful medicine, and its main risk is excessive bleeding. Although we are using very low doses that are usually well tolerated, life-threatening bleeding can rarely occur. In addition, if used for more than a year, a DEXA scan for bone density should be performed, as heparin could cause osteoporosis.
Most people tolerate these treatments quite well and many, many more people die from taking aspirin and Motrin family medications called NSAIDs (for example, for arthritis) than from taking heparin each year. Still, heparin is riskier than the other treatments I recommend, and I tend to use it as a last resort. As an aside, I would note that I am not convinced that this clotting theory is entirely accurate or the reason heparin works, because I have found other blood thinners like Coumadin and nattokinase to be useless for CFS. However, we know by clinical experience that heparin is helpful for many patients. I suspect that we’ll find that this could be because heparin is also an antiviral.
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The treatment approach I am recommending for infections in CFS/FMS patients is getting more and more support over time. For a more detailed discussion (and numerous references) about the lack of reliability of current testing and the proven benefits of treating infections in CFS empirically based on the symptoms and history, see the From Fatigued to Fantastic! notes at www.vitality101.com.
In summary, several infections can cause or be caused by CFS and FMS. These are usually associated with immune system malfunction. Testing for infections may be helpful but can be expensive. If you can afford the tests and/or your insurance will pay for them, they are worth checking and will make it easier to adjust therapy over time. Otherwise, it is reasonable to treat empirically—that is, without testing. If you have lung congestion and/or recurrent temperatures over 98.6°F, scalp scabs, vertigo, or a history of repeated “allergic” reactions to antibiotics, or if your CFS improved with antibiotics in the past, your doctor may be able to effectively treat you with antibiotics. If you have chronic flu-like symptoms or if your illness began with a flu-like infection, and your blood tests show EBV VCA and HHV–6 IgG antibodies elevated at 1: 640 or higher, you should consider the antiviral regimen with Valcyte. I would usually only use the antibiotics, Valcyte, or heparin if symptoms persist after treating sleep, hormonal issues, infections, and nutritional deficiencies. Fortunately, there are now physicians around the country who can expertly guide you through these therapies (see Chapter 12, “Finding a Physician”). Our new understanding of how to diagnose and treat the infections offers exciting new hope.
Important Points
An important component of CFIDS is disordered immune function, which opens the door to repeated infections, repeated treatment with antibiotics, and yeast overgrowth.
Treat yeast overgrowth by avoiding antibiotics and sweets. Many patients have found herbal antifungals such as Anti-Yeast, probiotics such as Acidophilus Pearls, and other antifungal medications, such as Diflucan, 200 milligrams a day for six to twelve weeks, to be helpful.
Bowel parasites are common in CFIDS patients, whose symptoms often improve with treatment. However, most laboratories do not adequately detect parasites through stool testing. To get an accurate test result, use a laboratory that specializes in stool testing (see Appendix E: Resources).
Prevent parasitic infection by filtering your water with an effective filtration unit. I recommend the Multi-Pure water filter (see Pure Water in Appendix E: Resources).
If you have lung congestion and/or recurrent temperatures over 98.6°F, scalp scabs, vertigo, or a history of repeated “allergic” reactions t
o antibiotics, or if your CFS improved with antibiotics in the past, I would treat with the antibiotics. Take antifungals while on the antibiotic to prevent yeast overgrowth.
If you have chronic flu-like symptoms despite treatment for yeast and underactive adrenal glands, consider trying the antiviral, immune-stimulating protocol discussed in this chapter.
If you feel chronically flu-like or if your illness began with a flu-like infection, and your blood tests show EBV VCA and HHV–6 IgG antibodies elevated at 1: 640 or higher, you should consider the antiviral regimen with Valcyte combined with the natural antivirals and immune boosters.
Questionnaire (Items to be checked are in Appendix B.)
Parasites
____ 1. Did your problems begin with a diarrhea attack?
____ 2. Do you sometimes have diarrhea? If so, is it severe? ____ If you answered yes to either #1 or 2, check off #77.
From Fatigued to Fantastic! Page 19