Lyme: Fight Harder For Science and End This War

03/25/2016 02:09 pm ET Updated Mar 25, 2017

I just had a flashback.

When I was diagnosed with Lyme, I knew little about it. I went to the first infectious disease doctor with my bullseye still present, asking lots of questions. Among them, are you sure this three weeks of doxycycline is enough.

He smiled, and with his eyes fixed on his computer, he said, "Yes, it's more than enough. In fact, I could just tell you to take ten days but then you'd come back later if anything went haywire and ask why I didn't give you twenty-one."

He looked up, "Call me if anything goes crazy."

A month later, I called. I woke up with a very sore throat and fever two days before my brother's wedding and a gland in my neck that felt like a pulsating grape. It was movable but scarily large.

He said if it didn't go down in a few weeks, to let him know.

It didn't, so I called again.

He thought I should have it biopsied.

I thought I should go see my ear, nose and throat doctor instead, who sent me for an ultrasound but felt it was a remnant of Lyme. The radiologist said it was big, but symmetrical, and not particularly alarming. He also found a few more and said to have my neck rescanned in three months.

I want to point out that this symptom is extremely typical of a Lyme co-infection called Bartonella, which of course, I did not know at the time.

Is that what the ID doc meant when he said to reach out if anything went crazy?

He seemed more than willing to have me get a biopsy of a lymph node that sits on top of my carotid artery, when a quick google search could have schooled him on my treatable tick-borne infection.

So, while I have been witness to several ID physicians (and others) malignantly spreading misinformation about Lyme-literate doctors, I wonder what they make of their own ivory tower guy suggesting I have this risky and unnecessary procedure? And how do they feel about his ignorance regarding Bartonella, a common infectious disease he should have known about, especially since I had a textbook case and later tested positive for it?

It is important that you see these breathtaking documents obtained by a FOIA request suggesting the deeply entrenched complicity between high-level players at the CDC, NIH, and IDSA members and Lyme guidelines authors. This is further reinforced by members of the CDC and IDSA colluding to hold an illegal and clandestine meeting that violates The Federal Advisory Committee Act.

Once you open the FOIA docs hyperlink (above), make sure you click on all the blue links that say "source" to see a letter from NIH's Phil Baker (now retired) to CDC's Barbara J. Johnson saying he will not miss the "Lyme loonies", NIH's Edward McSweegan's letter to CDC's Paul Mead referencing "Lymees (sic) and their parasitic LLMDs", IDSA's Durland Fish writing CDC's Barbara J. Johnson, "This battle cannot be won on a scientific front. We need to mount a sociopolitical offensive, but we are outnumbered and outgunned. We need reinforcements from outside out (sic) field."

These documents vividly demonstrate the callous mocking and open disrespect for chronically ill Lyme patients.

Take your time and absorb the enormity of this scorched earth policy. These are acts of war.

Note that Phil Baker signs his email, "Take care and keep the faith."

Chronic Lyme is not a religion.

You see, there are bad eggs in every field. Yet when I think about the Lyme doctors I've encountered, as a whole, they are among the smartest, most thoughtful and caring I've met. The word heroic comes to mind.

They've been fighting this uphill battle on their own, like soldiers carrying us on their backs, for decades.

While they are slandered, discredited and marginalized, they throw their souls into making us better while most of mainstream medicine turns away.

The truth is that this very real smear campaign against Lyme clinicians harms patients by delaying their diagnoses. I often wonder how many end up dying from heart failure, suicide, immunosuppressant drugs, or becoming crippled with no care at all because of the snide remarks and outright lies told behind closed doors that scare patients out of getting the care they need.

As discussed in my previous articles, I experienced it, and have become close with many others who have, too, including the family of Julia Bruzzese. She is the angelic twelve year old who was blessed by the Pope and is wheelchair-bound from Lyme. Her family feels this is due to such deplorable treatment and misdiagnosis from over one hundred doctors across six major New York hospitals. They believe that the malicious, deceptive comments some of them made about Lyme physicians critically delayed Julia's diagnosis and treatment. And now, despite her obvious suffering, would deny her any care or possibility of cure.

Many find the gross mishandling of Lyme Disease by members of the CDC, IDSA and NIH unconscionable and dark; morally reprehensible. Because we know that the longer you have Lyme, the more difficult it is to treat and the greater your risk is of sustaining permanent joint and organ damage, like heart failure or paralysis.

We live in some kind of a twisted world that a crushing, sometimes fatal, infectious disease is politicized. Failing to intervene to avoid unnecessary suffering is wrong. As a nation, we know this. It is why we intervene in cancer against long odds.

More and more research supports the existence of chronic Lyme; Lyme doctors are on the right side of history.

Why would men of science sit idly by and watch a patient, a child, suffer and die without treatment?

We must rise to defend and protect our good people.

We've lost enough.