Post-Lyme syndrome

A 68 year old female consulted with me one year ago. She had been ill for over 4 years. At the outset she had flu like symptoms and a rash on her neck. A 2 tier Lyme WB was positive by CDC criteria. She was treated with antibiotics 4 four months by her primary care physician. The physician pronounced her cured and refused to extend the course of therapy. Her symptoms returned with a vengeance. She developed more pains, joint swelling, numbness and tingling, fatigue, and cognitive dysfunction. She had progressive memory loss. She could not focus, concentrate, process or retrieve words and thoughts. She had episodes of confusion and disorientation. She saw numerous doctors, all of whom were dismissive, if not rude. She was told her symptoms were normal for a woman her age. Then after doing her own research on the Internet she ordered an IgeneX test.

The Lyme IgM Western showed bands: 18 28, 30, 39, 41 and 58. A C6 peptide antibody was 0.86. Her CD57 was 18.

When I first saw her the physical exam showed difficulty with word search and moderate short term memory deficits. Positive findings included: bilateral weakness in the upper extremities, absent deep tendon reflexes in the knees and ankles, decreased pin-prick sensations in 4 extremities and decreased vibratory sense in the feet and lower extremities.

The brain MRI showed scattered white matter lesions-non-specific. The brain SPECT showed decreased activity in the the left anterior temporal region.

After one year of treatment she is about 90% better. Her cognitive functions are nearly normal. Her treatment included: Omnicef, Biaxin, Plaquenil, Tindamax, Zithromax, Mepron, Malarone, Artemesin, Bactrim, Amoxicillin, and Doxycyline.

Comments:
This patient's story is illustrative of care given to similar patients by many LLMDs.
There is good evidence: patient's history, physical exam, laboratory test result and brain imaging all support the diagnosis of CNS Lyme/Lyme encephalopathy/neuroborreliosis etc --even to well informed IDSA physicians. The science suggests that all such patients should be considered for intravenous antibiotics, no matter which side of the fence you are on. In this case, the patient improved with only oral (extended-plus-co-infection) anti-microbials.

The IDSA view is that chronic Lyme disease does not exist. The IDSA has no argument with the existence of a post-Lyme syndrome. The authors of NIH sponsored studies have expressed empathy for such patients. Their suffering is real. The investigators and CDC claim current evidence does not support the use of long term antibiotics for such patients. It recognizes the genuine suffering of such patients and that this suffering is causally related to previous, (treated) Lyme disease. Fair enough. (I disagree).

But something strange has happened. Patients who seek the attention of ID doctors and rhematologist, even those with "CDC positive" results are treated as pariahs. Despite hard evidence, the patients are herded out of these physicians offices as quickly as possible. They are still told: you are depressed, you just need to exercise and loose weight, you have fibromyalgia, you are just imagining your symptoms, you spend too much time on the Internet, there is nothing wrong with you, I don't care what the tests say--you don't have Lyme and so on.

I went to medical school--admittedly some time ago. I thought doctors are supposed to be empathetic and kind to patients. Instead, many doctors are belittling, dismissive and bellicose.
They don't have to agree with the ILADS/LLMD approach, but for heaven's sake, they have a diagnosis to rest their hats on: post-Lyme syndrome-"a poorly characterized autoimmune syndrome."

They should at least read their own literature. These physicians should be supportive, offer a diagnosis, explain the diagnosis, its pathogenesis prognosis and therapy.(If they believe the party line?). These understanding physicians should prescribe therapies to alleviate or ameliorate the suffering of their patients. Instead, they appear to be taking out their disdain for LLMDS on their patients. Ironically, this may be a good thing because the patients keep looking until they find us. (I don't want to give "the other side" any good ideas).