Is Chronic Lyme Disease Real? Part 1

The Lyme disease controversy has been brewing for quite some time with many people asking is chronic Lyme disease real?
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Last Updated on May 4, 2021 by Lori Geurin

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.

The Lyme Disease Controversy

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.

(Want our FREE Lyme disease download that’ll give you the signs, symptoms, and stages of Lyme? Simply click the link below for the printable PDF.)

Fact And Fiction

There are many misleading statements in 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 that.

False Truths

Comments like these are simply not true and perpetuate misunderstandings about the harsh realities of Lyme disease.

As a result, there is a lack of empathy for people who are in a very real struggle for their lives. (Often because the medical community has either denied their pain or been unable to help them.) This is clear in the title of 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.

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Chronic Lyme Disease Issues

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

  • diagnosis
  • severe lack of funding for Lyme research
  • insurance denials of much-needed treatments
  • treatment protocols

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

Related: New York Times, This Is Lyme.

Is Chronic Lyme Disease Real?

Yes, absolutely, it is.

But, depending on who you ask you may hear a different response. If you ask the Centers for Disease Control (CDC) they prefer to call it “post-treatment Lyme disease syndrome.”

But, if you ask people with Lyme disease who have had to quit their jobs due to the severe nature of their ongoing (aka chronic) illness their answer would 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).

But, maybe we have bigger fish to fry…like trying to find a cure for Lyme for every patient.

So…

Potato, potahto,

I’m not saying the “chronic” issue is not important at all, but I do think there are so many Lyme-related issues that are worthy of our attention.

Want to learn more? I created a Lyme resource to help answer your questions. The guide provides you with:

  • more details about Lyme and other tick-borne diseases
  • valuable information on diagnosis and testing
  • where to find financial help for Lyme patients
  • prevention tips
  • instructions for how to properly remove a tick
  • and more…

all based on research. Simply click below to check it out.

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 and there is no cure.
  • The disease is not cut and dry. It’s very complicated.
  • Hundreds of thousands of people are diagnosed with it each year, and many of them were sick for a long time before their diagnosis. Many people with untreated Lyme will continue having health problems for a long time (chronically).
  • These people need and deserve compassion, understanding, and support.
  • Most patients with chronic Lyme find that their care is not covered by medical insurance, costing untold amounts, causing families to have to sell their possessions and homes, and sometimes declare bankruptcy to afford the costly, out-of-pocket treatments.

Chronic Lyme Disease Patients Deserve Compassionate Care

This helps the public understand and empathize with other people who are suffering from 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 homes (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? I know so many who have lived this and it’s a tragedy.

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. Not to mention having to quit my teaching job because I was too sick to work. And all my doctor said was, “You look stressed. You need to get out and walk more” and, “You can’t get Lyme disease in Missouri.”

Wrong on all fronts. My healing did not begin until I fired this primary care physician, found new doctors who were knowledgeable and cared about the pain I was suffering, and wanted to help me get better.

Detrimental Comments On A Health Website?

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, 

Was this article helpful?

So, 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 it with you when I receive it.

** Update:  It’s been over 4 years since I contacted healthline.com about their article and I have not heard back from them. However, they recently posted this article about chronic Lyme disease.

Do you know anyone who has been sick with Lyme disease for a long time? What are your thoughts about Chronic Lyme Disease?

For more information about Lyme disease be sure to check out:

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