Judith Albertat - Lyme Disease: My Journey Back to Health

CONTENTS

Translated from the French by Michelle Hallworth

Editorial Team:
Veronique Molnat, Elvire Sieprawski, Priscille Tremblais

Graphic design and production: Catherine Julia (Montfrin)

Photo: Stockphoto/Laflor

ISBN : 978-2-36549-078-8

Printed by print[team] / France

Placed in the Bibliothque Nationale: first quarter of 2014

Copyright 2014 Thierry Souccar Publishing, France

http://www.thierrysouccar.com

All rights reserved

Published with the help of Rgion Languedoc Roussillon

To Gwenal, to Jacques

To Patrice.

A huge thank you to Patrice Lepine, Joel Chertier, Philippe Raymond, Bernard Michaut, Patricia Diallo, Henri Cohen, Jean-Marc Nunos, Viviane Schaller, Bernard Navez, Germaine Burian, Pascal Adloff, Bertrand Choisy, Jean-Michel Palasse, David Denot, Sylvie Dupuch-Chaumeton, Fabrice Hennion, Vicky and the Sharing Health Association, Anne-Beatrix and Jess Zigmi, Gilberte and Marcel Pradel, Michle and Jean Garrabou.

A special mention to Cyril Dolmatoff and Vronique Molnat, who guided me with a sure hand through the transformation of the first draft of the manuscript into what it is today.

And thanks, too, to a certain grape. Without that cursed fruit, who knows if certain of my symptoms would have had the spectacular development which has led me to where I am today? Perhaps I might have disembarked before the end of the journey, without having received all these lessons and met all these exceptional people. My thanks then, once again, to Nature and to Life. May their next lessons be less painful!

PREFACE: RICHARD I. HOROWITZ, M.D.

I was recently asked by Judith to write a few words for her book on Lyme disease. It is truly a pleasure to do so, as the story of her suffering is one that I am well familiar with in the United States. After returning home from my medical training in Belgium at the Free University of Brussels, I moved to upstate New York to practice internal medicine. I did not realize at the time that I had moved into one of the largest Lyme endemic areas in the United States.

During my first few years of medical practice, patients would often come in to my office with a similar story. They had a strange red rash that had appeared in different parts of their body. Sometimes, it was a solid red rash that expanded in the days and weeks to come, or sometimes it looked like a "bull's-eye". Occasionally they had no rash, but often they presented with a multi-systemic illness after experiencing flu-like symptoms. They complained of fatigue, a stiff neck, headaches, light and sound sensitivity, ringing in the ears, dizziness, memory and concentration problems, insomnia, and muscle and joint pain that would often come and go and migrate around the body. Other symptoms included chest pain, shortness of breath, palpitations, tingling, numbness, or burning sensations that would come and go and also often migrate around the body, with associated psychiatric symptoms such as depression or anxiety. Some of my patients remembered seeing a tick bite, but often they did not. If they had a physician who recognized the signs and symptoms of Lyme disease and had personally witnessed the rash, they were often diagnosed with the classic EM or Erythema ChronicaMigrans rash, which is pathognomonic for Lyme disease. They were usually given three weeks of antibiotics such as doxycycline, or cefuroxime axetil. If the doctor was not educated in the diagnosis and treatment of Lyme disease however, then they may have been told to come back in several weeks to check the blood tests, and that the rash was probably due to a cellulitis, or a spider bite. They were told to go home because there was nothing that could be done for them at that point in time.

The stories of these patients and their subsequent clinical course were often the same from that point onward. For many, the antibiotics worked for the EM rash and they remained symptom-free. Often however, in the weeks, months, and years to come, they developed a debilitating illness. They would go from doctor to doctor looking for answers, and often would see between 10 to 20 specialists without ever finding a cause for their illness. For their chronic fatigue, muscle and joint pain, they would often see a rheumatologist. The physical examination was often normal, and blood tests were also normal. In that event, they were told that they suffered from chronic fatigue syndrome or fibromyalgia. If the blood test showed a positive anti-nuclear antibody (ANA), or rheumatoid factor, then they were told that they suffered from lupus or rheumatoid arthritis. They would be placed on anti-rheumatic drugs such as prednisone, methotrexate, or a tumor necrosis factor alpha-blocker like etanercept. These drugs often did not work, or made their symptoms worse.

For their neurological symptoms, they often ended up seeing multiple neurologists. Since the physician was unable to find a cause for their headaches, dizziness, and memory and concentration problems, they would be told that they had intractable migraines, vertigo, or some form of dementia and early Alzheimer's disease. For their symptoms of tingling and numbness, with associated fatigue, they were often told that they had an autoimmune disorder such as multiple sclerosis.

For their chest pain, palpitations, and shortness of breath, they would end up seeing a cardiologist. The exercise stress test, echocardiogram, and Holter monitor were frequently normal, and they were told it was probably a stressful lifestyle which was responsible for their symptoms. If they had associated fevers, sweats, and chills with fatigue, muscle and joint pain, they would see an infectious disease specialist. The doctor would perform multiple blood tests including a Lyme Elisa test, and since it would often come back negative, they were told that they no longer had Lyme disease, and that the three-week course of antibiotics given to them had been sufficient. Finally, for the newer increased psychiatric symptoms of anxiety, depression, OCD, or hallucinations, they were told that the illness was in their head, and were often prescribed anti-anxiety, antidepressant, or antipsychotic medications. These patients would go from specialist to specialist without anyone getting to the underlying source of their illness.

What did all of these patients have in common? All of these patients suffered from chronic Lyme disease, but the diagnosis was missed by every physician they had seen. Lyme disease is the great imitator, and can imitate every medical disease just like its older cousin, syphilis, a similar spirochetal illness. The physicians would miss this illness because the blood tests to diagnose this disease are highly unreliable. Most doctors have been taught during their medical training to undertake a two-tiered testing protocol, starting with an Elisa test and only following up with a Western blot if the Elisa is positive. Unfortunately, the Elisa is an extremely insensitive test. Most scientific studies show that it has an average sensitivity of 56%, and some studies show that its sensitivity is even worse. In a recent study done at Johns Hopkins University, which is one of the most prestigious medical schools in the United States, they found that the two-tiered system of testing for Lyme disease missed up to 75% of the patients. The situation with the Western blot is often no better. There are 100 strains of Lyme disease in the United States and over 300 strains worldwide. Most Western blots only test for one strain at a time.