LYME WARS - A Love Story: The Story Behind the Story.

Over the thirty-three years I’ve been involved with the issues of Lyme disease, diagnosis

and treatment have been rampant with controversies, which have devolved into two camps. To

state the issues as plainly as possible, I quote from an article by Lorraine Johnson and Dorothy

Kupcha Leland:

“Why do some people contract Lyme disease, receive treatment, and then return to health

– while others get sick and stay sick, for months, years, or even for the rest of their lives? It’s the

most vexing problem in Lyme disease. And for decades this important question was almost

completely ignored by the medical establishment. Instead, physicians, health officials,

researchers, the National Institute of Health, and the Centers for Disease Control and Prevention

persistently told the patient community that what we call ‘chronic Lyme’ didn’t even exist.”

The philosophy established by the Infectious Disease Society of America (IDSA)

proports that “Lyme Disease is hard to catch, easy to cure, and one month of antibiotics cures

Lyme disease.” They contend that any symptoms that remain after a few weeks of antibiotics are

not from Lyme disease. They adhere to that formula, no matter how many weeks, months, years

or decades the patient has been infected and untreated.

In the face of multitudes of research projects, many done by well regarded medical

institutions and researchers, proving the contrary, the CDC has followed the IDSA into their

unproven conclusion. It appears that many medical schools, training our young doctors, are

following the lead of these two august medical institutions, contending that four to six weeks of

antibiotics (usually doxycycline) cures Lyme disease.

In opposition, many Lyme disease patients, and the “Lyme literate” doctors who treat

them, understand that the bacteria that cause Lyme disease can migrate to any organ or tissue of

the body where four to six weeks of antibiotics cannot kill them, for the following reasons:

1. Lyme bacteria, named Borrelia Burgdorferi (Bb), are of the spirochetal family and

can drill into areas of the body where antibiotics don’t reach – for instance around

tendons. Bb can also cross the brain-blood barrier and evade antibiotics there.

2. Bb also has a mechanism for evading antibiotics by closing into a cystic form.

Antibiotics cannot break open the cysts unless taken with another medication to do

that. When antibiotic treatment is ceased, the cysts open and several live spirochetes

emerge.

3. Bb can form biofilms in the body, which are protective blobs where a number of

bacteria can reside, and where antibiotics cannot reach them.

Despite these various mechanisms for Lyme disease spirochetes to evade being killed by

antibiotics, the IDSA insists that any illness remaining after a few weeks of antibiotic treatment

is not caused by an active infection with Lyme bacteria. Thus was born the moniker “Post

Treatment Lyme Disease Syndrome” – PTLDS. The IDSA continues to insist that continued

illness by patients cannot possibly be an active infection. They contend that it’s surely some

unexplained, unknown cause. Some physicians have even stooped to saying these patients are

making it up when continuing complaints of illness.

However, physicians who specialize in the diagnosis and treatment of Lyme disease (and

other tick-borne diseases) follow the guidelines of the International Lyme and Associated

Diseases Society (ILADS). ILADS trained doctors believe their patients when they say they are

still sick, and their approach to diagnosing and treating Lyme disease patients include:

1. Using combinations of antibiotics, not just doxycycline alone.

2. Advising Lifestyle changes, including diet regulation to restrict sugars, gluten,

alcohol, and perhaps dairy products.

3. Using supplements and essential oils, which have been shown to impact the growth of

Lyme spirochetes

4. Addressing sleep issues. (Lyme disease often causes sleep problems.)

5. Evaluating for co-infections which are tick-borne diseases caused by other pathogens

such as Babesia, Bartonella, Powassan virus, rickettsia and others.

And so, the debate over continued illness after a few weeks of antibiotic treatment shows

the IDSA continuing to contend those sick patients have a mysterious Post Treatment Lyme

Disease Syndrome (PTLDS). Some Lyme literate physicians proposed that PTLDS means

“POORLY TREATED LYME DISEASE SYNDROME.”

To quote the words of Lorraine Johnson and Dorothy Leland of LymeDisease.org:

“Finally, after years of such Lyme denialism, that situation is starting to change. In July

2024, a committee of the prestigious National Academies of Sciences, Engineering, and

Medicine (known collectively as NASEM) convened a workshop to examine the question of

what they called ‘Lyme infection-associated chronic illness’ – or ‘Lyme IACI.’ Their goal? To

develop recommendations for how best to improve diagnosis and treatment of patients who

become ill with Lyme disease and remain that way.”