Acute Lyme with rash is not an easy one: it is a public health crisis.

It is clear that the IDSA and ILADS sharply disagree about everything Lyme. The two sides have come closest on the management of a patient with a tick bite and EM (bull’s eye) rash. The gap is widening. The CDC/IDSA acknowledge that about 20% of patients treated with the recommended course of doxycycline (2-3 weeks) continue to have symptoms which become chronic. This not remotely adequate. Based on the CDC estimate of 300,000 new cases yearly there are 60,000 new cases of post-treatment Lyme syndrome yearly which WE think of as chronic Lyme disease. This is the tip of an iceberg which the IDSA/CDC refuse to see. The patients with EM rashes are the lucky ones: they have robust immune responses and their disease is diagnosed in a timely fashion. The main body of the iceberg is composed of patients who: did not have the rash (perhaps as many as 75% - or more), were misdiagnosed or had a gradual insidious and atypical (mainstream viewpoint) course. Many of these and other critical facts are impassively reviewed in the latest report from the Hopkins group, Feng et al, “antibiotics” September 16, 2015. This time Auerwater did not sign as a co-author. These Hopkins researcher are tacitly admitting that Lyme is a public health catastrophe of unthinkable proportion.

The Current therapy for new cases is unacceptable. What is the best course of action? In seems that a mix of antibiotics which targets active spirochetes and persister forms may be appropriate. Have studies been done? Of course not. Are we really going to wait for them? The diversity of drugs found active against Lyme persisters is surprising. They include: antivirals, antifungals, antihelmintics (worms), antiparasitics, rifamycins, quinolones, antimalarial (including artemisinin) and a wide spectrum of exotic, unknown pharmaceutical agents. My sense is that we need to treat longer (6 weeks) and with two drugs, doxycycline and something else. I have long used Tindamax which is absent from this list. (See research of Sapi). And for God sakes – treat until the rash is gone and until all symptoms are gone. A patient already-treated for pneumonia with a standard 2 week course of antibiotics complaining of persistent fever and cough productive of bloody-green sputum would never be told: “Sorry, you have had your three weeks of antibiotics, your pneumonia is gone – whatever is wrong with you cannot be pneumonia.” Seriously. That would be a clear case of malpractice. With Lyme it is de rigueur.

It should be clear: we are dealing with a public health crisis. Drugs that are in wide use already can be safely combined. Medical treatments should be science based, not evidence base, as the termly is widely understood by physicians. Treatments should be based on clinical experience, science and common-sense with the understanding that the practice of medicine is the practice of a healing art, in measure instructed by science, but not and in and of itself a direct application of science per say.

The largely community of non-LLMD doctors needs to start getting this. How would your doctor, after reading this paper want his family member treated?

Conversion reaction disorder

Have you ever been told you have a conversion disorder?

A cursory review of basic medical literature implies that conversion reactions are very common. Are they?  Generally, this term refers to patients presenting with neurological symptoms not due to a physical or organic cause but rather a psychological one. Usually these events occur in relationship to a stressful  event triggering the response.  Symptoms are generally short lived. The diagnosis is only considered when all possible physical/medical explanations have been excluded.(Have they?)

A concept which frequently explains how doctors think is anchoring. Once a diagnosis, such as conversion reaction is on a patient’s chart subsequent doctors new to the patient are quick to draw the same conclusions. This is a very dangerous practice, called a heuristic error.

The case of a patient I saw yesterday made my blood boil. I met a very nice 17 year old male and his parents 6 months ago. Yesterday they returned for our second appointment.

This patient had been suffering with severe weakness for 5 years ago. At age 12, after suffering with a febrile infectious illness he developed an acute onset of weakness which affected his lower and then upper limbs. He was diagnosed with strep throat and prescribed a course of amoxicillin which led to a diffuse macular rash. As you may know, rash with amoxicillin after “strep throat” frequently means the diagnosis was mono, not strep.

The young man was seen by a wide array of specialist at the best centers: Hopkins, Children’s etc.  Complete neurological testing was performed, including an NCV/EMG. Nothing could be found.  He was diagnosed with a conversion reaction. Two psychiatrist found no evidence of psychiatric pathology. At least one suggested the medical doctors had missed something. For 5 long years he was passed around to a bevy of primary care doctors and specialist. The diagnosis was always the same: conversion reaction.

At the urging of a friend he was referred to me. He comes from a normal, well-functioning nuclear family. (A rarity).  There had been no trauma or emotional stress. He experienced weakness which came and went, involving all four limbs but mostly legs. He was a straight A student and showed no signs of maladjustment or depression. At times he was in a wheel chair; other times he managed with a cane. He had few other symptoms but did complain of some migratory joint pains unexplained by a rheumatologist.

When I examined him I found evidence of diffuse muscle weakness without sensory signs or loss. Deep tendon reflexes, although diminished, were present. The exam was not what I expected but I thought he had a form of pure motor CIDP. Contrary to the view of most neurologist, CIDP is a clinical diagnosis and cannot be excluded due to the presence of deep tendon reflexes.

I always go back to the maximum I was taught so many years ago: diagnosis is 85% patient history, 10% physical exam and 5% lab.

The EMG had not been repeated in 5 years.

With my consult notes in tow, new doctors took another look at him. Repeat NCV/EMG showed changes typical of those seen in chronic demyelinating peripheral motor neuropathy. A new neurologist was now recommending IVIG, possibly plasmapheresis (at Kaiser). The family told me that they showed my consultation note to everyone and it was only because of my note doctors took a new look.

His Lyme testing was borderline/negative. Lyme had not been excluded, further testing was needed. I told the family that even if Lyme testing is positive IVIG should be started first because it lowers the risk of neurological Herxheimer reactions which have the potential to make things worse. I made a note that the if used, antibiotics with neuroprotective effects should be used. (doxy, Rocephin).

In all likelihood mono triggered Guillaume Barré syndrome which is chronic and is very similar to CIDP.

I took a fresh look at this patient. There was no reason for a conversion reaction.  Conversions reactions should be brief but his weakness had not changed for 5 years. The illness began in the aftermath of a viral syndrome, a known trigger for GBS. EMGs are frequently negative early in neurological disease and need to be repeated sequentially. Psychiatrists thought it was something physical.  All of the doctors and experts who saw him made the same heuristic anchoring error and all jumped to the easy diagnosis already provided to them.

Lyme patients are told they have conversion disorders every day. This is vaguely understandable because “they” say Lyme doesn’t exist. (In the way we know it).

What is the excuse here? The thinking medical detective is a thing of the past: obsolete. Patients get 5 minutes with a primary care doctor who is quick to shuffle them off to specialist. Primary care doctors are trained to follow guidelines, not to think. Specialist view patients through a narrow myopic lens with no eye to the larger picture.

I wish such episodes are rare, but we all know they are not.

As a patient, if you do not think you have conversion reaction/psychiatric problem/psychosomatic problem/Munchausen’s disease or fictitious disorder (as diagnosed) you must be your own advocate. When doctor after doctor after doctor gives you the same wrong diagnosis it is easy to doubt yourself and question your own sanity. Listen to your gut. You are navigating through a system which is broken.