Excerpt for Lyme Free Living In An Infected World by , available in its entirety at Smashwords

Lyme Free Living

In An Infected World

Copyright 2018 Hygeian Publishing

Published by Christopher Maloney at Smashwords

Smashwords Edition License Notes

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your enjoyment only, then please return to or your favorite retailer and purchase your own copy. Thank you for respecting the hard work of this author.


To all of us who live in Lyme lands. May we all find comfort and direction.

Table of Contents



1 I Am Angry About Chronic Lyme

2 Does Chronic Lyme Even Exist?

3 What Do We Really Know About Lyme?

4 Can't I Just Take Lots of Antibiotics?

5 Can't I Just Move?

6 Lyme And The Immune System

7 The Herx Jerks

8 Barking Up The Wrong Tree

9 Living With Lyme

10 Treating Lyme

11 Treating Life-Threatening Lyme

12 What I'm Going To Do

13 Update On Co-Infections

14 Lyme Free Living

About The Author

Other Books By This Author

Connect With Christopher Maloney


My greatest appreciation to the pioneers of ILADS, the hearty women and men who have bucked the system to relieve the suffering of Chronic Lyme. And my thanks to all the patients, the tireless foot soldiers of Chronic Lyme who have refused to be silenced by an apathetic system. You are my heroes.


The following book is for informational use only. Please discuss it with your loved ones, your caregivers, and your doctors. I am happy to provide the studies used in this text, but omitted the full endnotes for ease in viewing. Medicine is constantly changing, and new studies may have already come out that contradict what is written here. Please email me or have your doctors email me for studies and information at:


It’s time to stop the Lyme madness. We need to take a step back and really look at how we can live in a world where Lyme is continuing to spread.

Wherever you find yourself on the journey of Lyme, I want to help you live in that world. If you've just been diagnosed with Lyme, please read this book before you subject yourself to aggressive treatment. If you're a battle-scarred veteran of the Lyme Wars, I go into aspects of Lyme you may have missed. I also give you more treatment options.

If you or a loved one is dealing with aggressive, life-threatening Lyme, please move immediately to chapter eleven. It lists twenty FDA approved drugs that are not commonly used for Lyme treatment and could save your loved one's life.

Have you been told Chronic Lyme is a mental condition? If you don't know why your doctor isn't taking your symptoms seriously, we'll talk about that in chapter one.

Don't know why, after months of aggressive treatment, you still feel terrible? It's likely that you're dealing with an immune system problem, not a Lyme problem. We'll talk about Lyme and the immune system in chapter six.

Would it surprise you to learn that healing from Lyme can and should feel better? Not just at the end. Every single day you’re living with Chronic Lyme you should gradually feel better. We'll talk about Lyme and the Healing Response in chapter seven.

In this book, I will tell you why you should stop doing things that make you feel wretched. Why? The process of making you feel worse with treatment is supporting the illness, not your healing. Inflaming your body with aggressive, miserable treatments defeats the purpose of the treatments. It depletes your immune system, and it creates a no-win situation for patients; either you feel terrible with the illness or you feel terrible with the treatment.

Aggressive treatments in Chronic Lyme cases may not help more than more moderate treatments. We need to work toward lifelong treatment plans for patients with Chronic Lyme. The current model of Lyme has been a focus on a single infection or set of infections. Instead, we need to recognize that re-infection is now the new normal and cannot allow it to derail recovering patients. Creating a plan for patients so that they can continue to recover from any future infection must be our goal.

Why did I write this book?

When I finished my first book explaining the Lyme Wars, Why Chronic Lyme Doesn't (And Does) Exist, patients asked me what I would do myself if I had Chronic Lyme. I’d like to think I’d find a middle way, but it’s a lot easier to sit on the sidelines of the Lyme Wars than to make the choices myself.

So I wrote this book from the standpoint of what I would do if I had Chronic Lyme. I will base everything I write here on the best evidence-based medical research we have.

Yes, I will also tell you what I would do personally, which has changed as I've researched. For example, at the beginning of my research the Lyme vaccine still sounded like a good idea. Now, not so much. (My current reaction is more like, "Yikes! Run away!" Since I've learned the vaccine can cause all the Lyme symptoms in some people.)

I have the great advantage of having my mind clear and my joints currently pain-free, so I don’t have to struggle with the misery of Chronic Lyme while I examine my options.

For those of you who believe that only someone who currently suffers from the disease has special insight, I have also accessed the many online Lyme chat boards, examining the popular treatments from first person accounts. I also have access to and understand the herbal as well as conventional medical options. So while I don't have the illness (at least current symptoms), I do understand it.

For every person with Chronic Lyme, the journey is individualized. I hope my own journey will be helpful to you as I consider the most fruitful choice of treatments.

1: I Am Angry About Chronic Lyme

I apologize if this book seems at times to be angry. No particular person or treatment makes me angry, I’m just angry about Chronic Lyme.

I’m not just angry because the Centers of Disease Control and Prevention (CDC) continues to claim it doesn’t exist. They are hurting so many people without any justification. It bothers me every day that they’ve taken the “just say no” position to Chronic Lyme, despite the accepted reality that between ten and twenty percent of Lyme patients may have lingering symptoms. But I’m used to that head-in-the-sand mentality. It continues even though Chronic Lyme is now four times more common in the U.S. than AIDS and still the CDC thinks of it as a "subjective syndrome" because they could not locate the infectious agent to their satisfaction.

What also makes me angry is that, after forty years, we still are no closer to fixing Chronic Lyme. We still don’t have any studies that show a cure. The “Lyme literate” doctors of ILADS (International Lyme and Associated Diseases Society) are the only ones even treating Chronic Lyme. They (we, as I’m at least “semi-Lyme literate”) stuff their patients full of chemical cocktails in the hopes of a cure. Why?

"The plausible idea that additional antimicrobial therapy for potentially persistent bacterial infection would foster improvement has been a touchstone of hope in the 40 years since discovery of the disease."-M.T. Melia

But we live in a world where Lyme is endemic. An endemic disease is one that is always present, one which is expected to continue to be a problem indefinitely. Think of it like malaria being endemic in the tropics or gas pain being an endemic result of eating beans. Lyme being endemic means that experts no longer consider it possible that the disease will ever disappear.

In an endemic Lyme world, re-infection over time is virtually assured. So the drug cocktails will not fix the problem. What the extended drug cocktails do is speed the antibiotic resistance of Lyme. As the resistance spreads, the answer is to add more drugs. The focus on more medications makes me wonder when the “alternative medicine” crowd become the drug pushers?

I’m angry many patients treated for Chronic Lyme seem as bad as they did before treatment, and often look worse off. As we add more drugs, the side effects from those drugs also increase. But ILADS doesn’t call them drug side effects. We call them a healing response, a healthy “herxing” reaction of the body's immune system.

Only in the bizarre world of Chronic Lyme does feeling terrible equal a healing response. Even cancer doctors have the honesty to admit that chemo has side effects. Losing your hair and vomiting all day is not a “healing response.” It doesn’t matter if you’re suffering from Lyme or cancer.

In much of this book I will be talking about the shortcomings of many current Chronic Lyme treatments. Since ILADS doctors are the only ones currently treating Chronic Lyme, it may seem that all my irritation is directed at them. Let me be clear, I have the greatest respect for ILADS doctors. CDC doctors are not even trying to treat an epidemic of Chronic Lyme, so they will be ignored for much of this book. Just as the CDC doctors ignore or downplay the suffering of thousands of patients, a position I find completely inconsistent with our Hippocratic Oath to alleviate suffering. The few ILADS doctors trying to treat the Chronic Lyme epidemic deserve our gratitude even if they fall far short of a cure.

We need to move forward with a lifelong plan for Chronic Lyme patients. It can’t be to call them mentally ill like the CDC and we can’t expect them to eat a drug cocktail forever like ILADS. I don’t have all the answers. But I know the direction we need to go, the way forward. I know it is possible to live symptom-free in our infectious world.

2: Does Chronic Lyme Even Exist?

While Lyme is a global issue, we’ll be talking mostly about Lyme in the U.S. Here in the U.S. there are two groups that deal with Lyme, ILADS (International Lyme and Associated Diseases Society) and the CDC (Centers of Disease Control and Prevention). The CDC is the default group for Lyme, making up the vast majority of doctors and testing. According to the CDC, Lyme is easily tested for, easily treated, and Chronic Lyme does not exist. In comparison, ILADS considers Lyme to be harder to test for, almost impossible to treat successfully, and they are the ones primarily treating Chronic Lyme.

As you can imagine, the two groups of doctors from ILADS and the CDC don’t see eye-to-eye. The reality is that both sets of doctors lack large scale, definitive studies on either Lyme testing or treatment. Neither one is truly in a position to say the other side is absolutely wrong because patients often do not present with clear symptoms. We also lack a definitive, internationally recognized answer on whether Chronic Lyme exists.

But we should recognize now that when we discuss the symptoms and treatment of Chronic Lyme we are discussing a tiny portion of the whole. The vast majority of people who contract Lyme will not have symptoms. Those that do have symptoms will likely be made symptom-free (though they may continue to test positive for Lyme) after a month of antibiotics.

So when we discuss Chronic Lyme we are talking about the rare individual who gets symptoms and those symptoms are not resolved by a single course of antibiotics. It is likely that these individuals are suffering from other illnesses or processes that alter their immune response to Lyme, sapping their ability to mount a sufficient defense. These are the Chronic Lyme patients.

I'm a heretic in the Lyme Wars who doesn't follow either the CDC or the ILADS playbook. I don’t think strictly defined Chronic Lyme exists. If every lab test for Lyme showed a rampant infection of the Lyme spirochete in the bloodstream, none of the Lyme debate would be happening. But there is no rampant bloodstream infection. It has either been cured (the CDC viewpoint) or has gone into the cells (the ILADS viewpoint). So a narrowly defined Chronic Lyme blood infection does not exist.

BUT...though I don’t believe in narrowly defined Chronic Lyme, I do think that broadly defined Chronic Lyme exists. By broadly defined, I mean a set of symptoms that may be caused by antibiotic resistance, other Lyme species, co-infections, and/or autoimmune Lyme reactions. Including these broader factors in the definition of Chronic Lyme means we are not talking about an overwhelming blood infection by the one Lyme species the CDC recognizes as valid. We are talking about an ill-defined cluster of associated diseases that fall loosely under the Chronic Lyme umbrella.

Calling them all Chronic Lyme is the equivalent to calling every sniffle "the flu." It makes sense to laypeople, but it isn’t technically correct. The Infectious Diseases Society of America (IDSA), which writes the CDC's guidelines for Lyme, gets grumpy when people misname influenza and when people talk loosely about Chronic Lyme. They prefer the term PLDS (Post-Lyme Disease Syndrome). But Chronic Lyme is shorter, and as popular in common usage as the ‘flu.

Just realize we are talking about all the related infections and symptoms when we say Chronic Lyme. Recently an ILADS practitioner corrected me to say that he does not treat Chronic Lyme, he treats MSIDS (Multiple Systemic Infectious Disease Syndrome). A better name might be Chronic Tick Disease, but I realize we don't need yet another name for the illness. We need a cure.

3: What Do We Really Know About Lyme?

I will retell the story of Lyme very briefly here, with a focus on the treatments that have been used to cure it over the decades.

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