THE BLOG
02/10/2016 12:40 pm ET Updated Feb 10, 2017

Arrogance and Ignorance: A Catastrophe for Lyme Sufferers

After writing about my horrendous road to getting a proper diagnosis and treatment for Lyme disease and Bartonella, a bacterial co-infection of Lyme, I was overwhelmed by hundreds of messages from others with similar stories.

I believe that most who choose to dedicate themselves to helping professions, like medicine, take seriously their oath to Do No Harm.

Yet I am perplexed by the sheer magnitude of doctors from all over the world who are dismissive of their patient's symptoms and concerns, causing needless and profound suffering.

Take the case of renowned Duke oncologist and researcher, Dr. Neil Spector, whose four-year Lyme misdiagnosis led to irreversible heart damage and, ultimately, a transplant. Yes, you read that right. "Top Doctor Failed by Other Top Doctors Resulted in Heart Transplant."

He wrote a remarkable memoir, Gone In A Heartbeat: A Physician's Search for True Healing, about his ordeal.

If Dr. Spector, who has access to the best care, can be dismissed as being stressed when his heart is actually being ravaged by Lyme, what hope is there for the rest of us?

Why does this keep happening, and what can we do to get this information onto the front pages of every newspaper?

If overnight, the entire world is hearing the awful facts about the Zika virus, and President Obama is calling for $1.8 billion in emergency funding, why is the truth about Lyme, which has grown to epic proportions (300,000+ new U.S. cases every year) and shattered the lives of millions of otherwise healthy children and adults, pathologically ignored?

I recently went to a rheumatologist from NYC's top orthopedic hospital, Hospital For Special Surgery, to take a look at one of my lingering Lyme symptoms, minor swelling around the DIP joints in my fingers.

He requested that I bring all relevant medical records to my appointment.

I handed him the File of Hell from my brilliant, life-saving Yale-trained Lyme-literate doctor (I switched) and researcher, former president of ILADS, Dr. Steven Phillips, and he whipped through it with disdain. "I don't understand what you are being treated for and I don't understand your treatment," he snapped.

I calmly explained to the doctor, let's call him Dr. M, that I was being treated for persistent Lyme disease after my initial course of the CDC-recommended 200 mg Doxycycline failed miserably.

I told him where I was a year before (near death), and how happy I was that with further Lyme treatment, I was now approximately 95 percent better.

He reiterated that he still did not know what I had and told me he patently does not believe Lyme could persist. He sited the perilous IDSA mantra that many patients come to find out is a lie; that Lyme disease is easy to diagnose and easy to cure.

I asked him why, then, did he think 11 doctors missed it?

No answer.

I asked if he was aware of current scientific studies, like the one by Dr. Kim Lewis from Northeastern, or of Dr. Ying Zhang's from Johns Hopkins, or these 700 articles showing that Lyme bacteria can persist.

"No, I'm not," he angrily retorted, and said he did not want to see them.

He talked over me, had no interest in learning, and ultimately muttered that although he is sticking to his guns about not agreeing with my diagnosis (but having no other explanation for my ongoing symptoms and subsequent resolution of them), he "can't argue" with my progress.

I left there outraged by this shockingly common brand of medical dogma that leaves vulnerable patients bleeding by the side of the road.

I have heard from hundreds of people whose first symptoms sent them running to doctors who misdiagnosed them with conditions like MS, rheumatoid arthritis, bipolar disorder, CFS, fibromyalgia, lupus, ALS, hemolytic anemia, and Parkinson's when they later found out what they had all along was Lyme and/or its co-infections.

Sadly, many were first treated with immunosuppressive drugs, allowing their insect-borne infections to proliferate, making them more virulent and difficult to control.

Why is Lyme, Bartonella, Babesia and other infectious disease not ruled out before being given these life-altering diagnoses when these pathogens are famously known as The Great Imitators?

Dr. Steven Phillips states, "Rheumatologists get annoyed with me for saying they suppress symptoms, rather than treat their underlying cause. But I see a great number of rheumatology patients and the vast majority improve with antibiotic therapy. I find the same is true for some of these degenerative neurologic conditions. Wouldn't you rather take 6-12 months of antibiotic treatment to kill your infection rather than 30 years of immunosuppressant drugs that have potentially deadly side-effects like cancer and TB? I would."

I would, too. And I have.

Father of modern medicine, Dr. William Osler got it right when he said, "The greater the ignorance, the greater the dogmatism."

I couldn't agree more.