Is Chronic Lyme Disease Real? Part 1

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The Lyme Disease Controversychronic lyme disease

This morning I read a disturbing article written by David Heitz.  I cannot verify his credentials, but he describes himself as a freelance writer who specializes in health/LGBT reporting.

In his article, entitled, No, You Do Not Have Chronic Lyme Disease (yes, that really is the title) he attempts to make a case against chronic Lyme.Please note, the article is written on a health website, healthline.com. However, the author makes many medical claims about Lyme disease without providing resources or research to support them.

On the other hand, the International Lyme and Associated Diseases Society (ILADS) is an organization that consistently supports its claims with research. They are highly regarded as experts in the education and training of physicians who care for patients with Lyme disease. They have this to say about chronic Lyme.

A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.

This is in stark contrast with Heitz’s article.

Fact And Fiction

There are many misleading statements in the article, like this one,

The number of Lyme disease cases in the United States more than doubled from 1995 to 2009, to almost 30,000, according to the IDSA, but the U.S. Centers for Disease Control and Prevention (CDC) estimates that Lyme disease cases may be up to 10 times higher than reported.

While the numbers show information provided by the CDC’s website, the author fails to mention these numbers (up to 300, 000) are for the reported Lyme cases from only one year. If someone didn’t know this, he or she might assume that there were up to 300,000 cases of Lyme, in the U.S., total.

No wonder there is so much controversy about Lyme!

He also says,

Lyme disease from a tick bite can be cured with a short course of antibiotics.

While it is true that many cases of Lyme disease can be eradicated if the patient receives proper treatment promptly, his statement suggests that anyone with Lyme simply needs to take “a short course of antibiotics” and he or she will be cured.

This is like a doctor telling someone ” You can’t get Lyme disease in (fill in the blank with your city or town).”

Been there. Done thatis chronic lyme disease real

Comments like these are not correct and perpetuate misunderstandings about the harsh realities of Lyme. As a result, there is a lack of empathy for people who are in a real struggle. This is clear in the title to Mr. Heitz’s article.

A fellow blogger from WinonaLyme.com read his article too. She commented,

With something as controversial and complex as Lyme disease, you should treat it with the utmost respect.  Instead he dropped it, stomped on it, added a sneering snobby title, then slapped it up on the internet.

Ahem…I couldn’t agree more.

It’s no secret there is great controversy over Lyme disease, including

  • diagnosis
  • treatment protocols

But I’d like to share my thoughts on one particularly heated controversy.

Is Chronic Lyme Disease Real?

It depends on who you ask. If you ask the Centers for Disease Control (CDC) they prefer to call it “post-treatment Lyme disease syndrome”.

But, if you ask someone who has Lyme who has had to quit their job due to the severe nature of their ongoing (aka chronic) illness their answer would probably be an emphatic, “Yes, chronic Lyme disease is real!” (raising my hand up high here)

Personally, it doesn’t matter that much to me what we call it (even though Chronic Lyme Disease is a fitting description).

Potato, potahto,

Tomato, tomahto.

Issues, Attitudes And Beliefs Behind The Lyme Debate

In my humble opinion, the problem is more about the issues, attitudes and beliefs behind the debate. These factors can have a big impact on our understanding.

What matters most is that we acknowledge:

  • Lyme disease is real.
  • The disease is not cut and dry.
  • Hundreds of thousands of people are diagnosed with it each year, and many of them were sick for a long time before their diagnosis. And often these people will continue having health problems for a long time (chronically).
  • These people need and deserve compassion, understanding and support.

is chronic lyme disease realThis helps the public understand and empathize with other people who are suffering with Lyme (just like we would empathize with someone who has cancer, or heart disease, or is homeless, or has lost a loved one).

For example, what about people who lose their home (because they can’t work to pay the bills) and have to file bankruptcy due to the toll of Lyme disease? This really happens to hardworking, good people, but you’d never know it from reading Weitz’s article.

And how about those whose health insurance doesn’t cover the treatments they need to get better, and they’ve spent their life’s savings simply trying to survive?

Although I was diagnosed with Lyme disease (according to CDC standards) the majority of the tens of thousands of dollars my family has spent on my necessary treatments have been out-of-pocket.

What Is Heitz Saying And Why Is He Saying it?

Is the author saying we (people with “chronic” Lyme, or whatever you choose to call it) don’t exist?

Or is he saying our lives don’t matter?

He is the only one who knows for sure. But I will choose to believe he cares about other people, even though this isn’t reflected in the article. Much of what he wrote could be due to misunderstanding.

We can all be susceptible to believing falsehoods perpetuated by the media. But reporters and writers also have a responsibility to research topics thoroughly before presenting them as truth before the public.

After reading the article I went to the bottom of the page to read the comments. But, I was surprised to find that there weren’t any. There isn’t a link to leave a comment either.

But, a statement at the end of the article asks readers, is chronic Lyme disease real

Was this article helpful?

I answered “no” and sent them a return email detailing my reasons and expressing my concerns. Woah, am I coming out of my shell or what?!  😉

I’m anxiously awaiting their reply and will follow up and share with you when I receive it.

** Update:  It’s been nearly 3.5 months since I contacted healthline.com about their article. I have not heard back from them.

Do you know anyone who has been sick with Lyme disease for a long time? What are your thoughts about Chronic Lyme Disease? Do you believe our attitudes and beliefs shape our understanding?


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