Chronic Lyme Disease

Lyme disease is usually divided into three stages: early localized disease, early disseminated disease and late Lyme disease. The first stage is characterized by the characteristic rash with or without systemic symptoms such as fever, body aches and joint pains. Early disseminated disease is characterized by rashes and/or neurologic symptoms and/or heart problems. Late Lyme disease is associated with arthritis, usually involving one or a few large joints, particularly the knee, and/or neurological problems. The neurological problems can involve the brain, the covering of the brain or a specific nerve possibly creating headaches, paralysis, or nerve pain. Arthritis symptoms, particularly if only the knee is involved, can appear to be a solitary problem, with no clue that the problem is caused by Lyme disease.

Early disseminated disease occurs weeks to several months after the initial infection from the tick bite. These symptoms can be the first manifestation of Lyme disease since 20% of people with the disease do not recall any rash and approximately 25% of people with the disease do not recall a tick bite.

Late Lyme disease occurs months to years after the tick bite and, as in the case with early disseminated Lyme disease, the history of a rash or tick bite might not be present or a history of having had the earlier stages of Lyme disease. The symptoms include arthritis, predominantly of the large joints, especially the knees. Neurological symptoms can also occur.

Symptoms usually resolve gradually, as they do in most infectious diseases, after a full course of antibiotics. Post-Lyme disease syndrome refers to symptoms such as headache, muscle pain, joint pain and fatigue that persist, but generally resolve after six months to one year.

A confusing issue develops when a person who has, by all accounts, been successfully treated for Lyme disease suffers continuing health problems that do not resolve with time. This situation has been termed chronic Lyme disease by some and is the subject of much dispute.

Briefly, certain doctors and advocacy groups maintain that, in these situations, the symptoms are caused by Lyme disease that failed to be eradicated by the standard treatments. Medical authorities counter that the persisting symptoms are due to another illness that, perhaps, was triggered by Lyme disease.

The “other illness” suggested is often either fibromyalgia or chronic fatigue syndrome. Both usually respond poorly to any one of a number of medications or treatments traditionally employed. Many, if not most, physicians suspect that fibromyalgia and chronic fatigue syndrome are, at the root, psychological problems.

You can imagine how frustrated a person feels who had been totally healthy, was bitten by a tick, became ill with Lyme disease, failed to improve after treatment, and is now told he has a psychological illness! Personally, I think that the development of symptoms compatible with fibromyalgia or chronic fatigue syndrome after Lyme disease is further proof that these illnesses are not psychological.

I suspect that chronic Lyme disease is not due to the persistence of the Lyme organism, but that the Lyme organism has triggered some other illness. Therefore, additional antibiotics directed at Lyme would be pointless, and possibly harmful.

What to do? It is necessary to search for other illness triggered by Lyme. I have seen cases where Lyme triggers an arthritic illness. What initially was arthritis caused by the Lyme organism is now arthritis caused by another arthritic disease, itself triggered by Lyme. Look closely at the blood for autoimmune markers. If the symptoms suggest arthritis get treatment for arthritis even in the absence of confirmatory blood tests.

Persisting fatigue with or without bodily pain is usually the most troubling symptom for patients with “chronic Lyme disease.” Long courses of antibiotics are ,almost always, fruitless. A more productive approach is to start fresh, evaluating each symptom as a new issue using standard, individualized treatments as needed. For instance, despite the patient’s firm belief that persisting Lyme infection is causing severe fatigue treating fatigue with medications known to improve it can be very worthwhile. A creative and unprejudiced approach, as usual in medicine, offers the best chance for success.

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Sinus Fatigue

A little less than 10 years ago a research project that I had been working on for many years was published in the Archives of Internal Medicine. The observation that propelled me into the relationship described in the article related to my first experiences as a clinician.

I was aware that sinusitis caused fatigue years before I became a doctor because of personal experience and conversations with others who also suffered from sinus problems. I was surprised that my own doctor seemed unaware of the association and I was surprised that fatigue was not listed as a symptom in the general medical texts that I searched in college.

Nothing changed in medical school. Although the lists of illnesses that caused fatigue was quite long, and the lectures on the subject quite thorough, no one that I can recall mentioned sinusitis as a cause of fatigue.

When I first started practice my experience confirmed my own observations that patients with sinusitis were fatigued but, again, a thorough search of the medical literature produced nothing. I then started noticing that patients with a primary complaint of fatigue often, on more detailed questioning, acknowledged sinus symptoms but considered the sinus issue quite minor compared to the more pressing complaint of fatigue.

After trying to redirect the focus towards the sinus issue and initiating treatment, patients would usually notice a great improvement in fatigue. Patients found this puzzling. In fact, often a patient would return months later with the primary complaint of serious fatigue completely having forgotten the link with sinusitis. Once again I would treat the sinusitis and the fatigue would remit.

In the late 1980s I began to see some notice in the medical literature. A consensus conference of ear, nose and throat physicians in 1987 described fatigue as one of the diagnostic criteria for making the diagnosis of chronic sinusitis. I reported several cases of patients diagnosed as having chronic fatigue syndrome who experienced a complete or nearly complete resolution of fatigue following sinus surgery.

Nothing on the subject was mentioned in the internal medicine literature, an unfortunate omission since internists are the doctors who treat fatigue.

I was curious about how common sinus problems are found in patients with a primary complaint of unexplained chronic fatigue. This is how the project unfolded.

I examined 297 consecutive patients who were younger than 41 years, administered a detailed questionnaire and performed a battery of screening laboratory tests. Young patients were chosen in an effort to exclude the illnesses of older age groups that might confound the results.

Of the 297 patients, 65 (22%) noted unexplained fatigue that has persisted for more than one month, fatigue unexplained by the lack of rest, illness, or undo physical or mental exertion. Fifteen (23%) of these patients met the diagnostic criteria for chronic fatigue syndrome, an illness characterized by prolonged and severe fatigue.

When the 65 patients with unexplained chronic fatigue were compared to the remaining group of 232 patients most sinus symptoms were much more common in the group with unexplained chronic fatigue: facial pressure (80% vs 13%), heavy-headedness (80% vs 8%), nasal obstruction (87% vs 42%), frontal headache (53% vs 6%), sore throat (33% vs 8%) and cervical node tenderness (60% vs 6%.)

Of note, symptoms usually associated with unexplained illnesses such as gastrointestinal problems, sleep disturbance, and psychiatric illness were similar in the group with unexplained chronic fatigue when compared to the group with fatigue explained by a physical or mental illness.  However, sinus symptoms were much more common in the former when compared to the latter.

The results confirmed my suspicion that there is a peculiar and predominant relationship between chronic sinusitis and unexplained fatigue.