Peripheral neuropathy: a very common Lyme problem

In my practice, one of the most common set of symptoms, or a syndrome relate to peripheral neuropathy. Peripheral neuropathy is caused by nerve damage, which may be temporary, stable, progressive, mildly bothersome or disabling: Nerves are comprized of two parts which may be damaged: 1) axons, the body of the nerve and 2) myelin, the sheath around the axons of nerves. Nerves are then divided into sensory neurons ( associated with sensation) and motor neurons( associated with muscle activity). The nerves can come from different pathways: spinal nerve roots, the dorsal ganglia, peripheral nerve trunks and branches, autonomic nerves. Neuropathies can effect sensory nerves, motor nerves or more commonly both.

Differences between axonal and demylinating neuropathy can be seen with a routine exam:  large sensory fibers abnormalities may be associated with decreased sensation to pin prick, light touch and vibration. All that is needed is something sharp and a tuning fork. Small, unmylinated sensory fiber abnormalities associated with decreased temperature sensation.

Sensory symptoms of axonal small fiber neuropathy, may for exmple, inclde:   burning pain, radiating/lancinating/ electrical like sensations, pins and needles, increased sensation to light touch, numbness and reduced sensation.

Motor symptoms may include: weakness, muscle wasting, cramps, fasiculations, difficulty climbing stairs, decreased hand grip and restless leg syndrome.

Major characteristics of axonal vs demylelinating neurve damage can be seen with the EMG/NCV. Simply put: Axonal problems are seen with needle portion of the test and demyelinating problems are seen with the shocking part of the exam.

Some patients, with clear symptoms and abnormal physical examinations have negative EMGs. There is another test.

Patients may have small-fiber neuropathy not visable on an EMG.  This can be diagnosed with a biopsy of 2-3 areas of skin sent to a specialty lab.

The lab reports the "ENFD" - Epidermal Nerve Fiber Density. The test is fairly accurate.( I can perform this simple test in my office).

Most treatments for neuropathy are only symptomatic. The only therapy I have found to be curative is IViG. This therapy is extraordinarily expensive, costing $10,000 per dose given every 3-4 weeks. The FDA has approved IViGfor a limited number of conditions. It may be possible to get insurance coverage for some forms of neuropathy like CIDP which is discussed elswhere.

Babesia: an example of failed “evidence based medicine.”

When I was a 3rd year med student, some 33 years ago, we wouldn’t be having this conversation. Medicine, as practiced at that time would have understood we are in the midst of a devastating epidemic. Medicine, as an art, was practiced in a slower, more methodical fashion - when MRI machines, managed care, the debasement of physicians as “providers” and “evidence based medicine” were not on the horizon. In an era devoid of CT scanners patients were admitted to hospitals for diagnostic evaluation - old fashioned tools (and emerging technology) were at least equal partners. The new and improved practice of medicine is “evidence based,” which encompasses the opinions of experts as evidence. Evidence is not truth. Evidence relates to facts or interpretations of facts. Inevitably, the “truth” hinges on which evidence one chooses to consider. Medicine is ever evolving: the state of the art is always a moving target. The clinical practice of medicine should consider evidence from a wide variety of sources. Studies in laboratory animals is evidence. The clinical experience of many patients and physicians is evidence; and published studies are evidence. In the final analysis: medicine is still at its core, a healing art; it is not a science. When I was a medical student a patient suffering with multiple complaints: fatigue, fevers, sweats, headaches, shortness of breath, joint and muscle pain, numbness and tingling, mental changes, hallucinations - would be seen as sick - not crazy, because of a life-long relationship with a personal physician who knew the patient well. Patterns would be uncovered with many patients admitted to hospitals with overlapping features. I think blood would have been examined by non-rushed, hospital employed pathologists looking for parasitic illness: a basic tool. Malaria-like parasites within red blood cells would be seen: Babesia species. In “Clinical Vaccine Immunology,” November 2010, the authors report that evidence of Babesia duncani was found in 2% of blood donor samples and 27% of clinical samples. B. duncani was found to be distributed throughout the United States, including my state of Maryland. Contrary to dictum, Babesia microti was found much less frequently. In the Medscape “peer reviewed” reference, April, 2012, “Drugs, Disease and Procedures,” Dr. Cunha,and colleagues provide a topical summary of Babesiosis. Other, CDC accepted species of Babesia, MO1, CA1 and Divergens have been shown to cause human disease in the United States for which do not test at all. In Europe, human disease is associated with various species, including B. bovis, once only known as a cattle disease. (B. divergens, also from cattle, is the predominant agent). The authors report B. microti and “B.microti-like agents” in Europe causing human disease. At least one unknown Babesia species has been linked to human disease. Over 100 species of Babesia are known to exist. The 27% number for B.duncani presented above, may represent only be the tip of the iceberg. Currently used high tech procedures: IFA, PCR, FISH are of limited diagnostic value. The definitive diagnosis of Babesiosis hinges on the observation of organisms seen in a fresh (less than an hour old) meticulously stained blood smear, carefully screened by an experienced observer; numerous fields, over 100 must frequently be screened. Degraded blood smears examined by busy, mill lab techs are of no value. Bartonella are much easier: species jump off the slide as soon as you look. In bygone days, physicians used the tools readily available: a tuning fork, a stethoscope, a microscope and something else, much more important - our brains. In this day and age of “evidence based medicine,” where medicine is considered a science; where limited studies(which are not science) are taken out of context, the results of which unreasonably generalized; where physicians work on corporate/HMO time clocks; where the autonomy of individual physicians has been relinquished to “the experts;” where doctors are encouraged not to think for themselves; where medicine has become a job, not a calling; where the art of medicine has been tossed out like the proverbial baby in the bath water - much is lost. Discoveries which might otherwise be clear, are lost in the muddied waters of “mainstream” medicine, blinded by a dysfunctional system and by its own arrogance.

Babesia and menopause

I recently started treating a 53 year old woman with a clear history of Lyme disease; and she had also tested positive for B.duncani  at the lowest cut-off point of 1:256 via Labcorp. She was perimenopausal and  had hot flashes and night sweats.  She thought the night sweats were due to menopause. A single 3 day course of  Coartem did not make any difference. We discussed a strategy for sorting things out. I suggested she go on estrogen therapy for 1-2 months to see if the sweats would abate. If the sweats went away then the likely cause was menopause; if they did not active Babesia infection was more likely.

She went to her GYN to try HRT. She did not like straight estrogen and started bio-identical HRT. Almost immediately she started feeling much better.

Her energy level increased, her mood improved -  as did  her overall sense of well-being. The hot flashes went away. The night sweats got better but persisted. At this point she decided to stay on HRT.

A rule of thumb with Lyme patients is to treat all the other stuff and  see what remains.

The same patient had a history of borderline hypothyroidism on no replacement therapy at the time.  A TSH level was 3.4: low dose of Cytomel, T3 thyroid was started and this perhaps also helped with mood and energy.

This patient had clear other evidence of Lyme disease, with a CDC positive test. Psychological symptoms including depression, severe, with  hopeless were described. Luckily, the depression quickly resolved. Her Lyme had only been treated with a low dose of doxycycline.  It seemed treating thyroid dysfunction and menopause made the biggest difference.

Of course I did recommend further treatment for Babesia: not urgently.

I will veer off the usual topics  for a moment.

Is hormone replacement safe for menopausal women?

When I was a medical resident you were almost committing malpractice if you didn't prescribe it: it lowered the risk of heart disease, decreased the likelihood of osteoporosis - all without increasing the risk of breast cancer.

Things have changed. Now if you prescribe it you are almost committing malpractice. Perhaps the pendulum has swung too far. HRT was found to increase heart attacks in women with known heart disease. This should have been expected since estrogen increases blot clots. Estrogen is associated with a tiny increase in the incidence of breast cancer, but not mortality. Maybe HRT isn't so bad after all.

I have previously discussed the controversy regarding an optimal TSH level.

Beating Lyme is always easier when one's general state of health is better. Optimal management of hormonal issues may make treatment easier and more effective (or not). Anyway, she is very grateful because she feels a lot better.