why lyme disease is controversial

lyme

I wrote this a couple weeks ago and have hesitated posting it because it's a) controversial b) I hate arguing and c) I was kind of annoyed when I wrote it.

However, in an attempt in vulnerability, I'm going to post it anyways. Because this blog isn't about me in the long run, anyway.

It's about shedding light on a topic people are too scared to talk about.

So here it is.

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It's 10pm, and I'm pissed. 

I know Hemingway recommended writing drunk and editing sober, but since I can't drink, I'm going to write angry and edit calm. 

I'm angry because some people get carpal tunnel and can get on disability for a year. I'm angry because I have a neurological movement disorder, late-state neurological Lyme Disease, a serious genetic disease, mono, and a heart condition, and I've had to beg doctors for treatment. I've been on the phone with three insurance companies and three of my doctors today and it's a mess. It just sucks. Insert curse words here. 

A lot of people keep asking me why insurance doesn't cover Lyme disease treatment and why only a small handful of doctors believe I actually have late-stage Lyme and actually know how to treat it.

I've failed to see an article to really break down the Lyme controversy in layman's terms. Once I read that good writing is writing simply on complex issues. So I'm going to try to outline this for you all and cite my sources as much as possible. 

It's going to be a lot of information, so try to stay with me here! 

How it all began

If you know me, I'm a thinker. I never take anything at face value. I always research something for myself. This includes anything from medical treatments to travel plans to economic policies. I pride myself on knowing my s**t.

When the best doctors in the world started shrugging their shoulders and gave up on me two years ago, a few people mentioned the possibility of Lyme disease to me after remembering my bug bite and the timing of when I got sick. But I said to myself: "...wait. I was tested twice using standard testing for Lyme and both times it came up negative. How could I still have this?" 

"Just research it," they told me. So I did. 

The weird thing is I really don't care about conspiracy theories. I think they're a waste of time and they really don't affect me.  But once I started doing the research myself on the reliability of testing via Johns Hopkins & dozens of peer-reviewed articles, I realized what was happening. And then it hit me.

Holy. This is really a thing. People are dying and can't get the help they need. And I'm now one of them. 

It's seriously insane. Dozens of doctors told me I was the "perfect" picture of health.

One told me I wasn't dying, winked at me, and said it was just anxiety from working in New York City. You know, they thought I was a stressed out hysterical woman although I had zero history of anxiety. I'm sorry, what?! I had been working ten hours a day, running four miles a day, then going out right after my runs like a champ until I got the bug bite in Central Park. (With photographic evidence of said tick bite.)

So why exactly is this all happening? Here's the breakdown:

Insurance Companies Hate It

1.  Lyme is the new AIDS/HIV:  since it triggers hundreds of other diseases, it's freaking expensive. Insurance companies don't like this. They want to avoid the expenses of Lyme any way they can, so they lobby the crap out of any legislation relating to treatment and accurate testing of Lyme disease. 

Here's a direct quote from my Aflac short-term disability policy. Cool!

"Aflac will not pay benefits for a Disability that is caused by or occurs as a result of any bacterial, viral, or micro-organism infection or infestation, or any condition resulting from insect, arachnid, or other arthropod bites."

Inaccurate Testing

2. Testing is not accurate and was never meant to be. Standard Lyme tests measure the antibodies that are being produced after the insect bite occurs. Since Lyme wreaks havoc on your immune system, your body stops producing antibodies just a couple weeks after getting bitten, therefore making the test wildly inaccurate for any time a week after the bite. So if you get the test ordered ~9 months after the bite, you're screwed. 

According to a study from Johns Hopkins, Lyme tests can miss approximately 75% of the patients who have the disease. There are several dozen studies that prove this. 

Corruption at the IDSA (Here's where it gets tricky)

3. The Infectious Diseases Society of America (IDSA), who decides the Lyme treatment protocols for the Center of Disease Control (CDC), is a private group, and over half have been proven by Connecticut's Attorney General to have "undisclosed financial interests" when reviewing treatment guidelines. 

antitrust

Therefore, they say the test is accurate and Lyme disease can be "cured" with 30 days of antibiotic treatment at any point of the disease's course and refuse to review hundreds of peer-reviewed studies refuting this. They will only look at the ~4 studies outdated studies "proving" their point vs. the 230+. 

 Yet, the guidelines remain the same.

studies

study

cancer

IDSA

This is getting so bad that congress has to get involved.  (Major shoutout to Rep. Gibson, youda youda best.

Since the CDC sets universal treatment standards for all diseases, 98% of doctors go off of this.  As a result, most doctors believe the testing is accurate. Because that's what's in the CDC literature. No positive result, no Lyme. And that's that.

And this is where LLMDs come in. More on that later. 

Research funding consistently blocked

4. These same lobbyists for insurance companies encourage these officials in the IDSA/CDC to block research funding to the NIH and other groups wanting to create more reliable testing, cures for Lyme, etc. See: Phillip Baker. 

This is why organizations such as the Global Lyme Alliance are such a BFD. They are singlehandedly making up for an extreme lack of NIH funding for research on Lyme Disease, like for this guy. (WUDDUP DR LEWIS)

philip

LLMDs: The Unsung Heroes

5. Therefore, since the medical community goes by CDC standards, most medical professionals believe Lyme disease cannot be in a chronic state -- despite multiple studies that refute this.  However, when doctors tend to research the topic for themselves, they tend to become extremely passionate about Lyme Disease and helping those who are suffering in their respective fields. 

Enter: LLMDs.

A small subset of doctors who are extremely well-researched in this area are called LLMDs, or Lyme-literate doctors. Most of these physicians either had the disease themselves or children that had it, and then became well-versed. One of the only ways to get rid of Lyme/go into remission is through long-term antibiotics -- often intravenously. 

Since this can have similar effects to chemotherapy, many doctors using this are punished since it's not technically approved by the CDC. Both Lyme doctors and patients agree though it's a necessary evil for recovery. 

This is where ILADS comes in: ILADS, or the International Lyme and Associated Diseases Society, is a society of LLMDs who save hundreds of thousands of lives a year and counteract the IDSA. It's a beautiful thing. (And my doc up in New York was their President for the past few years.)

One doctor told me: "I keep pressing on because I can't let these people die in good conscience knowing full well I can do something about it."

Hello, Dallas Buyers Club

Luckily, several states such as New York, Maine, Virginia, and Pennsylvania have passed laws protecting these doctors. Though a lot of effort and late-night phone calls to senators, representatives, and Cuomo, the New York law was passed last November. Amidst intense pressure from insurance companies, Cuomo signed the bill a minute before the deadline.

I sobbed when I heard the news.

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I've fought to stay alive. I've fought for treatment. And now I'll fight for others to do the same.

Onward. 

E

PS -- Through this, though, I've learned the importance of grace and forgiveness. I'm going to write a post about that later.