Controversies in Neuroborreliosis

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Subject: Controversies in Neuroborreliosis From: ritastan@aol.com (RitaStan) Date: 1996/12/16 Newsgroups: sci.med.diseases.lyme

CONTROVERSIES IN NEUROBORRELIOSIS

Audrey Stein Goldings, M.D.
Lyme Disease Conference
October 23, 1992

The objectives of this handout are to cover issues which are not even handedly addressed in the current literature on Lyme disease. I will:
  1. present a practical approach for making the diagnosis of neuroborreliosis,
  2. explore the other side of the post-Lyme syndrome (ie: the likelihood of chronic ongoing infection),
  3. discuss the relationship between MS and Lyme,
  4. critique the current regimens published for treating neuroborreliosis and
  5. present my own approach which may differ from some leading authorities.
"Anyone who in discussion relies upon authority uses, not his understanding, but rather his memory."
Leonardo Da Vinci - Notebooks ( c. 1500)
I hope to provide the reader with a broader understanding of neuroborreliosis so that he or she may better use current and evolving knowledge for clinical decision making.

I. NEUROBORRELIOSIS: MAKING THE DIAGNOSIS

Because of difficulties in making the diagnosis of neuroborreliosis, the physician will need a familiarity with the most common forms of presentations, which will be emphasized. The following points will help evaluate the patient for neuroborreliosis:
  1. For most patients, systemic features of disease coexist with or predate neurologic manifestations.
  2. Both central nervous and peripheral nervous system involvement is frequent with Lyme disease and typically occur together.
  3. Laboratory data may or may not confirm the diagnosis, and other disease in the differential diagnosis must be evaluated thoroughly in cases where diagnostic uncertainty exists.
  4. Although history of exposure to B. Burgorferi should be sought, for various reasons, patients may not remember a history of a tick bite, or the pathognomonic rash particularly if the disease is presenting years after the exposure.

CLINICAL DESCRIPTIONS OF NEUROBORRELIOSIS

CENTRAL NERVOUS SYSTEM (CNS)

MENINGISMUS WITH NORMAL CSF

Patients may present with headache and stiff neck without evidence of CSF inflammation. Since these symptoms probably indicate active infection.

Stiff neck might alternatively be due to axonal degenerative changes of the cervical paraspinal musculature, but there should be other evidence of a more widespread neuropathy when this is the case.

LYMPHOCYTIC MENINGITIS

Lymphocytic Meningitis may occur indistinguishable from aseptic meningitis during early disseminated disease (weeks to months after inocculation with B. burgdorferi).

MENINGOENCEPHALOMYELITIS

PSYCHIATRIC DISORDERS
may occur. CSF may be normal.

SUBACUTE ENCEPHALOPATHY (SAE)

The MOST COMMON chronic CNS manifestation is a SAE,

ADDITIONAL CNS TESTING: NEGATIVE TEST RESULTS DO NOT RULE OUT THE DIAGNOSIS OF NEUROBORRELIOSIS

THE PERIPHERAL NERVOUS SYSTEM

In a series of patients with chronic neurologic manifestations of Lyme disease symptoms of chronic involvement

PERIPHERAL NERVOUS SYSTEM TESTING

Electrophysiological testing may show evidence of a mild peripheral neuropathy. Axonal degeneration and perivascular inflammatory infiltrates are noted on pathological specimens.

CHRONIC NEUROBORRELIOSIS

A. THE MOST COMMON PRESENTATION IS SAE, POLYNEUROPATHY, AND ARTHRITIS.

The TRIAD OF SAE, POLYNEUROPATHY AND ARTHRITIS IS HIGHLY SUSPICIOUS FOR NEUROBORRELIOSIS.

Since serologies may be contradictory or negative, the physician will have to settle for treating if clinical suspicion is strong enough and assess whether the patient has "possible" or "probable" neuroborreliosis. Vigilant attempts to rule out other disorders should be undertaken. Screening should be done for

when a definite diagnosis can not be made.

B. CURRENT MEDICAL MYTHOLOGY:

"YOU HAVE FIBROMYALGIA. YOU MIGHT HAVE HAD LYME DISEASE IN THE FIRST PLACE, AND EVEN IF YOU DID, YOU WERE GIVEN ENOUGH ANTIBIOTICS. RETREATMENT WILL NOT HELP".

PERSISTENT INFECTION VERSUS POST-LYME SYNDROME

Many patients are sent home with antidepressants, muscle relaxers but no antibiotics from doctors' offices because they have symptoms of fibromyalgia. Pictures similar to, or identical to fibromyalgia may be part of the constellation of symptoms of Lyme; it may occur more rarely as an isolated symptom, or surface after what would otherwise be considerated successful treatment.

Symptoms of fibromyalgia due to Lyme disease have not been cured with short term oral or intravenous antibiotics, so some argue fibromyalgia is not due to active infection. I would question whether those particular antibiotic regimens were adequate to eliminate the infection, rather than assume the patient has developed "Post-Lyme Syndrome" (some yet to be defined immunologically triggered disorder).

THE SCOPE OF THE PROBLEM

Bujak et al. evaluated patients a mean of almost 5 years after treatment.

C. SYMPTOMS OF FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME IN LYME DISEASE MAY BE ATTENUATED FORMS OR CHRONIC MANIFESTATIONS OF THE FLU-LIKE SYMPTOMS ASSOCIATED WITH EARLY DISSEMINATION.

All physicians experienced with treating Lyme disease have had patients who present with a recurrence of flu-like symptoms, months to years after they have completed the usual antibiotic course of therapy, oral or intravenous, and re-exposure had not occurred.

Do these symptoms sound like a "fibromyalgia-like syndrome" or "acute fatigue syndrome"?

III. THE ASSOCIATION BETWEEN MULTIPLE SCLEROSIS AND LYME DISEASE : THREE DIFFERENT SCENARIOS

1.) LYME CAN LOOK LIKE MS BUT SYMPTOMS AND PATHOLOGY RESIDE OUTSIDE THE CENTRAL NERVOUS SYSTEM.

Lyme may present as a MS-like illness, but on many occasions the pathology is not actually in the CNS. Since Lyme symptoms are often predominantly neurological and vague, they are likely to conjure up the diagnosis of MS in patients and physician alike.

2.) OTHER LYME PATIENTS DO HAVE CNS LESIONS BUT THESE ARE GENERALLY DISTINCTLY DIFFERENT, CLINICALLY AND PATHOLOGICALLY, FROM MS.

Patients can have CNS lesions in the brain or spinal cord with Lyme disease. The European literature includes many more cases than the American for encephalomyelitis, strokes, etc.

3.) ANOTHER GROUP OF PATIENTS HAVE MULTIPLE SCLEROSIS AND LYME.

There are some patients who have a clear-cut preexisting history of MS before the onset of Lyme disease.

These patients are most likely genetically predisposed to MS and the Lyme bacteria exerts its major effect by "turning on" immunologically directed CNS injury. It is not uncommon to get a history of the onset of an exacerbation of MS related to infections, so Lyme exacerabating MS would be expected.

HLA Class II molecules determine the intensity of the immune response to pathogenic foreign or self antigens.

IV. WHAT'S WRONG WITH "CURRENT GUIDELINES FOR TREATMENT" OF NEUROBORRELIOSIS.
First, read the fine print.

It is interesting to note that recommendations for treatment in the medical literature may in small print carry provisos that can easily be overlooked but are instrumental to understanding how important individualizaiotn of therapy is at the current time. For instance,

THE CASE FOR PERSISTENT INFECTION

Studies have shown that Lyme bacteria may be an intracellular pathogen and may evade the normal host immune response.

V. I DON'T HAVE "THE ANSWER" BUT HERE'S WHAT I DO.

VI. IN SUMMARY

I would like to reinforce the premises of my approach to diagnosing and treating neuroborreliosis.
  1. There is no current laboratory test that makes or breaks the diagnosis of neuroborreliosis. It is a clinical diagnosis substantiated by laboratory data when possible. Fortunately, the majority of cases are fairly monotonous in presentation, and other diagnoses are easily ruled out. In situations where the physician simply cannot achieve diagnostic certainty, he or she should notify the patient that the diagnosis is "possible" or "probable" neuroborreliosis. This has been done previously with MS (i.e. possible, probable, and definite MS), another disease where laboratory testing does not make the diagnosis in and of itself.

  2. There is no current laboratory test to monitor success of therapy which is critically needed. Until better testing is available, assessing progress, or lack thereof, will largely be determined with clinical acumen.

  3. The infection is difficult to eradicate and may require long term treatment. The spirochete, particularly in later stages, becomes well adapted to survival within its host environment. There are some patients that we may not be able to cure, but will be able to palliate with currently available antibiotics.

  4. Although immunopathogenic factors may play a crucial role in disease presentation, chronic infection may be necessary to perpetuate the process and play a causitive role in persistence of immunologically triggered symptoms.

  5. There is no DSM III category for "antibiotic seeking behavior". It is common for physicians who are unable to explain patients' symptoms or effect their cure to ascribe a psychiatric cause to their malady. This is easily done with Lyme since objective findings may be subtle or nonexistent. Because neuropsychiatric symptoms may predominate, it is easy in some patients to attribute their symptoms to depression or secondary gain. These patients do not in any other way seek other medication that would be associated with habituation or addiction (ie; pain medicine). Many patients suffer unfairly at the hands of physicians who refuse to make the diagnosis because blood tests are either contradictory or negative. "Lyme bashing", for instance referring to Lyme disease as "yuppie flu", is demeaning. The "just say no" attitude of certain physicians towards Lyme patients who request retreatment with antibiotics should not be condoned in the face of continuing experience with this potentially chronic disabling infectious disease.


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