The Agony of Mast Cell Activation Syndrome

By Lonnie Marcum

In the winter of 2016, my 17-year-old daughter was dying. She had severe allergic reactions every day, was in constant pain, and was losing weight at a rate that was not sustainable to life. She had reached the end of her rope, and I was completely out of ideas on where to turn for help……..Read More

Doctors Told Nicole Bell Her Husband had Alzheimer’s, He Didn’t

By Dorothy Kupcha Leland

“What Lurks in the Woods” is an emotionally tough read about a cruel disease that can destroy individuals and tear families asunder. Nicole wants readers to “figure out the whys in the illness around them…to go beyond the litany of symptomatic diagnoses to find root causes……..Read More

How the Patient Voice Has Impacted the Working Group

By LymeDisease.org founder, Phyllis Mervine.

Back in January, several of us at LymeDisease.org took the plunge and volunteered to serve on subcommittees of the Tick-Borne Disease Working Group, which was established by Congress as part of the 21st Century Cures Act. Patients have a lot riding on the success of this effort. It’s the first time we’ve had a seat at the table as the federal Lyme disease program is being discussed…….Read More

Ticks Can Transmit Multiple Infections in a Single Bite

By LymeDisease.org founder, Phyllis Mervine.

A single bite by a nymph or adult female tick has the potential to transmit multiple infections. Doctors who look sometimes find two, three, or even four tick-borne diseases in a single patient. LymeDisease.org’s published survey of over 3,000 patients with chronic Lyme found over 50% had at least one co-infection and 30% had two or more co-infections. And, those with co-infections tend to be sicker and harder to treat……Read More

How 11 top NYC doctors missed my Lyme disease

This is one of a series of guest blogs by people who have enrolled in MyLymeData.

A July 2014 wedding on Long Beach Island was the start of my nightmare. It was a beautiful weekend filled with love for two of our dearest friends who were, after 14 years together, finally legally able to marry. I woke up two days later, back home in NYC, with a crushing head and neck ache…..Read More

Tick-Borne Diseases in Children and Adolescents:

A Medical Illness with a Multidisciplinary “Cure”

While treating the medical aspect of the disease is paramount, for children and adolescents with chronic Lyme disease, medical treatment alone is not enough. Many of these children have Lyme related psychiatric symptoms or educational impairments. Their serious symptoms, combined with the duration of the illness, often leads to gaps in their development…….View Table Of Contents

Food Sensitivities

No lab test is as accurate as the elimination-challenge diet.

If you get a headache every time you eat wheat but the IgE antibody against wheat is not present, well then, it’s not an allergy. We call it a “food sensitivity.” Food sensitivities tend to cause vague, delayed reactions and are much more difficult to associate with a specific food item. And the culprits are usually our favorite foods, or foods we ingest frequently such as dairy, wheat, eggs or corn. ….View Table Of Contents

Choosing, Using and Losing Insurance When You Have Lyme Disease

Some plans bear all the risk of paying for medical treatment provided to patients, while others lay off some or all of that risk on providers through “capitation” arrangements. If your insurer is using capitation arrangements and does not bear the financial risk of your treatment, it may not object to expensive treatment and may actually be your ally….View Table Of Contents

Advanced Topics in Lyme Disease

Diagnostic hints and treatment guidelines for Lyme and other tick-borne illnesses

The fatigue of tick-borne diseases is not a general malaise that can be fixed with a nap or a cup of coffee. It is a crippling flu-like exhaustion, one that leaves muscles not sore but literally unable to function; one that makes the body feel shackled to the bed; one that makes the effort of lifting one’s head….View Table Of Contents

A Family Doctor’s Perspective on Tick-Borne Diseases in Children

Numbers and statistics are important. But we must never forget that each number represents a child who is ill, who hurts, who falls behind in school, can’t participate in sports, becomes alienated from friends, suffers multiple, often invasive, diagnostic evaluations, is misunderstood by doctors, parents and teachers, often suffers medical…..View Table Of Contents