Patients with Lyme disease are incredibly poly-symptomatic or pan-symptomatic; in other words, they frequently have every conceivable symptom and some that were not conceivable. Still on average, the three most devastating symptoms in chronic Lyme disease are: fatigue, pain and cognitive dysfunction. Let me attempt to address fatigue. Then the others.
Fatigue is feeling very mysterious thing. Words like fatigue or exhaustion do not begin to describe what many patients experience. Patients frequently report that it is difficult to move their head off the pillow in the morning – the thought of taking a shower (the thought, not the action) is daunting. This experience describe something which is qualitatively different from what most of us think of as fatigue or exhaustion. I don’t have a name for it.
Where does fatigue come from where is it localized? It seems to be a brain issue. A recent study from Stanford University School of medicine has found structural, MRI changes in patients suffering with chronic fatigue syndrome. There is reduction in a white matter content, particularly in the non-dominant hemisphere in an area called the arcuate fasciculus. The level of symptomatology correlated with the extent of anatomical change. Interesting.
Medical doctors are quick to diagnose Lyme patients with a psychological disorder: just what long-suffering souls, marginalized by mainstream medicine want to hear (for the millionth time) I suspect infectious disease doctors would be displeased if psychiatrist diagnosed Chagas disease or tularemia and rheumatologist would take offense with psychiatrists diagnosing scleroderma or sarcoidosis. Specialist: stick to your own fields. If you don’t know what’s wrong simply say I don’t know what’s wrong; don’t make up a diagnosis, the wrong diagnosis, one that stigmatizes, ignores, marginalizes and disparages your patient, thank you.
Fatigue is associate with so many different medical disorders. Generally, most doctors quickly rule out obvious disorders such as hypothyroidism. That is about as far as they go. (They frequently get that one wrong too). Most doctors cannot comprehend fatigue that Starbucks can’t fix.
There are some other common causes of fatigue which need to be examined. It is not unusual for me to see a patient who has suffered with fatigue for years who has never had a sleep study. The polysomnogram, the basic sleep study will frequently find: obstructive sleep apnea, central sleep apnea, abnormal sleep architecture with loss of deep sleep and/or REM sleep, restless leg syndrome and periodic limb movement disorder. When patients say they are able to quickly fall asleep or take a nap on command, a second study called an MSLT, multiple sleep latency tests should be also ordered to rule out narcolepsy.
Of course chronic infections do cause fatigue, especially those involving the central nervous system. I find that my patient who failed previous therapy need more intensive, frequently intravenous antibiotic therapies. Even the NIH sponsored studies show improvement of fatigue with intravenous Rocephin.
If the patient was well before Lyme disease I assume Lyme and related infection is the primary cause of his/her fatigue. Looking for things such as mycotoxin exposure and heavy metal exposure may be worthwhile in patients with chronic symptoms. In my experience, inadequate treatment of Lyme disease, babesiosis and/ or other co-infections is frequently an issue.
Of course patients suffering with chronic Lyme are depressed. Only rarely does the treatment of depression significantly improve the fatigue. (Many doctors become hung up with this answer). Patients have trouble falling asleep and staying asleep. They have disrupted circadian rhythms, stay up at night and sleep during the day. I believe it is okay to treat symptoms. A lack of sleep contributes to a cascade of falling dominoes leading to neuro-endocrine and immune dysfunction making everything worse. Medications for sleep may include trazodone, Ambien, Lunesta or Restoril. Klonopin in particular is useful when restless leg syndrome, anxiety or pseudo-seizure like activity is present.
A word about the treatment of depression. Patients with CNS infection have excessive neurotoxins floating around such as quinolinic acid. Patients may have glutamate excitotoxity. This means their brains are very sensitive to the neurotransmitter glutamate or glutamic acid. Lamictal may be the drug of choice; this agent needs to be titrated carefully because of the risk of serious skin disorder. Patient may paradoxically worsen with SSRIs like Prozac and Zoloft; Wellbutrin may be better tolerated.
Fatigue can be treated with a wide variety of stimulants. Changing brain chemistry can help. Nuvigil has been a particularly helpful drug although insurance companies are loath to pay for it. Alternatively, ADD drugs like Ritalin and Adderall may be used with varying degrees of success. When these medications are effective improvements in function help the overall healing process.
Adrenal fatigue is real. Endocrine dysfunction of various kinds may occur. Chronic illness overwhelms the neuro-endocrine axis. Blood tests, saliva test and urine test may be helpful; adrenal supplements may be very helpful.
Other treatments occasionally help such as low dose naltrexone and now oxytocin therapy.
Lyme patients have an incredibly complex illness: do not overlook a wide array of possible contributing factors.