[The following is reprinted with permission From Fatigued to Fantastic (Penguin/Avery Oct 2007).]
Because of the immune dysfunction present in CFS and Fibromyalgia, most of us have had not one, but many different infections associated with our illness. These include Yeast/Candida, Viral infections, Parasites, and Antibiotic Sensitive Infections (including Lyme and many others). Unfortunately, the tests we have available are largely geared toward picking up early infections, and miss most chronic infections. We have discussed viral infections and the problems with lab testing elsewhere. In addition, Professor Montoya will be presenting his placebo controlled research results later this month on using Valcyte to address CFS at the Baltimore HHV-6 conference. I suspect the results are positive as the drug company offered me $1,500 to come to a meeting discussing the results (I declined), but I look forward to seeing the results as we have found Valcyte to be very helpful in those with HHV 6 IgG blood tests of 1:320 or higher.
The good news is that you do NOT need to address most of the infections seen in CFS/FMS. Most of these infections are called "opportunistic", which means they get quickly eliminated when your immune system gets healthy. Because of this, addressing with the SHINE Protocol will result in 91 percent of you getting better without antibiotics (see our research study). In addition, natural therapies to boost immune function can be very helpful. As your immune system recovers, your body will eliminate most infections on its own.
Some infections (especially yeast/Candida), however, need to be addressed for you to recover. Some have chronic Lyme, though testing for this is very unreliable (see Lyme testing). In addition to addressing Candida, Lyme, and occasionally viruses and parasites, a subset of people with CFS/FMS need long term antibiotic therapy. I find this is the case if any of the following are present:
- A fever over 98.6°F—even 99°F—and/or
- Chronic lung congestion,
- Recurrent scalp sores which scab,
- A history of bad reactions to several different antibiotics (people misinterpret the die-off reaction as being an allergic reaction),
- A history of your CFS/FMS transiently improving in the past when given an antibiotic,
- Severe vertigo—this is when you feel like you or the room is spinning in a circle and is not to be confused with the disequilibrium experienced by most of us with CFS,
- Severe night sweats that persist after addressing the Candida and hormonal deficiencies.
If you have any of these, you may benefit from a trial of antibiotics. Let's look at this further.
How Do I Address These Infections?
People with these symptoms seem to be more likely to have infections that respond to special antibiotics. Fortunately, Lyme, mycoplasma and chlamydia infections, as well as 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 very effective against a number of unusual organisms (for example, Lyme disease). They sometimes cause some stomach upset. If this occurs, take the medicine with food and a full glass of water or lower the dose. They should not be given to children under eight years old because they can cause permanent staining of the teeth.
- Ciprofloxacin (Cipro), usually 500-750 milligrams twice a day. Although expensive, this is usually a well-tolerated antibiotic. It has a very wide range of effectiveness against a large number of organisms. Cipro has an additional benefit for men, as it also addresses any hidden prostate infections, as does doxycycline. You should not take oral magnesium or any supplement containing magnesium within 4 to 6 hours of taking Cipro or you may not absorb the Cipro as completely. A small percent 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 that developed fibromyalgia after taking Cipro. Cipro should only be used in adults.
- Azithromycin (Zithromax), 250-600 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. They 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 or 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 or add the other antibiotic or simply stop the therapy.
As mentioned earlier, I am more likely to use antibiotics for CFS patients who have temperatures over 98.6°F, even if it is 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 therapy. If your temperature drops with the antibiotic, it suggests that you do have one of these nonviral infections and 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, I would 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 therapy 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 antibiotics. It is a good idea to take an acidophilus supplement as well. Also, be aware that birth control pills may become ineffective while you take antibiotics, so be sure to use an alternative form of birth control.
It is very common to get what is called a Herxheimer (die-off) 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 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 mg of Minocycline every other day) and work the dose up slowly as able. The Nicholsons, who pioneered this therapy of antibiotic sensitive infections, note that if you have been sick for years, it is unlikely you will recover in less than one year of therapy, so you should not be alarmed by symptoms that return or worsen temporarily.
One more "antibiotic sensitive infection" deserves mention. If spastic colon symptoms persist after addressing yeast and parasites, consider addressing "SIBO" (Small Intestine Bacterial Overgrowth), which is common in CFS/FMS and another key cause of bowel symptoms. Having a low thyroid increases your risk of SIBO. Research has shown that addressing the issue empirically with the antibiotic Rifaximin 400 mg 3x day for 10 days can result in long lasting improvement of the symptoms of irritable bowel syndrome/spastic colon.45
Unfortunately, most physicians are not familiar with the immune function seen in CFS/FMS and will not prescribe anything if the tests are negative (even though the tests are not reliable). To find a physician who knows how to address these infections, find a holistic doctor or see a Fibromyalgia and Fatigue Center physician. CFS and FMS are very addressable, and addressing these hidden infections is one more piece of the puzzle!