Lyme disease natural history, complications and prognosis
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Editor-In-Chief: C. Michael Gibson, M.S., M.D. [1]
Overview
Prognosis
For early cases, prompt treatment is usually curative.[1] However, the severity and treatment of Lyme disease may be complicated due to late diagnosis, failure of antibiotic treatment, simultaneous infection with other tick-borne diseases including ehrlichiosis, babesiosis, and bartonella, and immune suppression in the patient.
A meta-analysis published in 2005 found that some patients with Lyme disease have fatigue, joint and/or muscle pain, and neurocognitive symptoms persisting for years despite antibiotic treatment.[2] Patients with late Stage Lyme disease have been shown to experience a level of physical disability equivalent to that seen in congestive heart failure.[3]
Though rare, Lyme disease can be fatal.[4][5][6][7]The first CDC recognized death from Lyme disease was Amanda Schmidt, age 11.[8]
Complications
Stage 3, or late disseminated, Lyme disease can cause long-term joint inflammation (Lyme arthritis) and heart rhythm problems. Brain and nervous system problems are also possible, and may include:
- Decreased concentration
- Memory disorders
- Nerve damage
- Numbness
- Pain
- Paralysis of the face muscles
- Sleep disorders
- Vision problems
Post-Treatment Lyme Disease Syndrome
Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches1. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme disease Syndrome” (PTLDS).
The exact cause of PTLDS is not yet known. Most medical experts believe that lingering symptoms are due to residual damage to the tissues and the immune system that occurred during the infection. Similar complications and auto-immune responses are known to occur following other infectious diseases.
In contrast, a few health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. However, there is no credible scientific evidence that PTLDS is caused by persistent infection. More importantly, studies have shown that patients treated with prolonged courses of antibiotics do not do better than patients treated with placebo.
The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months or even years to feel completely well. If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Doctors may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions instead. It simply means that the doctor is trying to help you cope with your symptoms using the tools available.
You may be tempted to try treatments that are unproven or non-standard in order to feel better. Unfortunately, many fraudulent products claiming to treat “chronic Lyme disease” are available on the internet or through some providers. These products have not been shown to help and can be toxic and even deadly.
It is normal to feel overwhelmed by your ongoing symptoms. Some things that may help you manage your PTLDS include:
- Confirm your diagnosis. Make sure that Lyme disease is the only thing affecting your health.
- Become well-informed. There is a lot of inaccurate information available, especially on the internet. Learn how to sort through this maze.
- Track your symptoms. It can be helpful to keep a diary of your symptoms, sleep patterns, diet, and exercise to see how these influence your well being.
- Maintain a healthy diet and get plenty of rest.
- Share your feelings. If your family and friends can't provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need.
Resources
CDC Post-Treatment Lyme Disease Syndrome
References
- ↑ Krause PJ, Foley DT, Burke GS, Christianson D, Closter L, Spielman A (2006). "Reinfection and relapse in early Lyme disease". Am. J. Trop. Med. Hyg. 75 (6): 1090–4. PMID 17172372.
- ↑ Cairns V, Godwin J (2005). "Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms". Int J Epidemiol. 34 (6): 1340–5. PMID 16040645.
- ↑ Klempner MS, Hu LT, Evans J; et al. (2001). "Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease". N Engl J Med. 345 (2): 85–92. PMID 11450676.
- ↑ Kirsch M, Ruben FL, Steere AC, Duray PH, Norden CW, Winkelstein A (1988). "Fatal adult respiratory distress syndrome in a patient with Lyme disease". JAMA. 259 (18): 2737–9. PMID 3357244.
- ↑ Oksi J, Kalimo H, Marttila RJ; et al. (1996). "Inflammatory brain changes in Lyme borreliosis. A report on three patients and review of literature". Brain. 119 (Pt 6): 2143–54. PMID 9010017.
- ↑ Waniek C, Prohovnik I, Kaufman MA, Dwork AJ (1995). "Rapidly progressive frontal-type dementia associated with Lyme disease". J Neuropsychiatry Clin Neurosci. 7 (3): 345–7. PMID 7580195.
- ↑ Cary NR, Fox B, Wright DJ, Cutler SJ, Shapiro LM, Grace AA (1990). "Fatal Lyme carditis and endodermal heterotopia of the atrioventricular node". Postgrad Med J. 66 (772): 134–6. PMID 2349186.
- ↑ "First Lyme Disease Death Told". Los Angeles Times. 1990-09-26.