Is Chronic Lyme Disease Real? Part 2

chronic Lyme disease
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Chronic Lyme disease is a hot topic in the news lately.

Several celebrities, including Avril Lavigne, Ashley Olsen and Yolanda Foster recently announced they have Lyme.

According to the CDC, over 300,000 people are diagnosed with Lyme each year. And countless others have it, but haven’t been diagnosed yet.

Just The Facts, M’am

chronic Lyme diseaseIf you get Lyme and are treated promptly with an appropriate dosage of doxycycline, your odds of making a recovery may be good.

However, we’re talking about people, including myself, who are not treated promptly and suffer debilitating, long-term effects of the disease.

For me, it took 18 very long months for multiple doctors and specialists to figure out what was wrong with me.

This was despite my insistence that I wanted to be tested for Lyme because I had become severely ill after getting bit by 2 tiny ticks one spring.

I eventually tested positive for Lyme and tularemia on different tests, including antibody and the Western Blot. I was “CDC positive”.

The Hippocratic Oath

Before my ordeal I didn’t realize things like this really happened to patients. Isn’t part of the oath physician’s take, the Hippocratic Oath, to “first do no harm”?

So how could so many people be suffering from ongoing Lyme symptoms despite visiting numerous doctors?

According to

In 2014, there were 26,000 confirmed cases of Lyme Disease in the US, with an additional 6,000 cases that are probable but unconfirmed. The CDC estimates that over 300,000 people are diagnosed with Lyme Disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, six times that number of people diagnosed with HIV/AIDS, and more than nine times the number of people facing Zika virus.

Lyme Lessons

I certainly don’t have all the answers, but I’m learning much through this journey.

I believe God brings good out of bad situations because I’ve seen it.

One of the most helpful things I’ve learned is how to advocate for my health, and the health of others.

People who are suffering with a debilitating illness need kindness and compassion. If you’ve been there you know what I’m talking about.

However, hundreds of thousands of Americans are diagnosed with Lyme each year. The painful truth is that way too many of these people are diagnosed months or years later, giving the Lyme bacteria, borreliosis burgdorferi, time to wreak havoc on a body.

This is often called “chronic Lyme”.

The CDC refers to lingering Lyme symptoms as “post-treatment Lyme disease syndrome”, or PTLDS.

But, it really doesn’t matter (to me) what you call it. I’m not saying it’s not important, but just that we need to focus more on the people who are suffering.

The fact is that debilitating pain and the myriad of other Lyme symptoms are all too real.

If a patient is suffering physically they deserve proper medical care that’s covered by insurance.

“Is Chronic Lyme Disease Real Or Not?”

That is the million dollar question. And while the debate rages on I want to encourage us to keep our focus on the hundreds of thousands of people who are suffering. 

Because at the end of the day, what or who really matters more than people?

chronic Lyme disease
People matter most.

Additional Info About Lyme

Please feel free to check out my story:

If you didn’t read part 1 in this series, you may want to read it here:

Is Chronic Lyme Disease Real? Part 1

And if you’d like to learn more about Lyme you may want to check out:

Do you or someone you love have Lyme disease?

Please share your comments and questions below. I love hearing from you!

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Celebrities With Lyme Disease

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Are you a “news junkie”?

Recently, I’ve seen several stories in the news about famous people with Lyme disease.

As more and more people come forward sharing their story it brings much-needed awareness and can give hope to others.

Celebrities With Lyme

I’m not typically that into celebrity news, but I’m curious about reading these particular stories.

I like to keep up with current events and medical developments about Lyme. As it continues to affect more people I believe we’ll hear more about it. And this may be part of what it takes to get better diagnostics and testing for patients.

Yolanda Foster

I recently ran across an article about model, Gigi Hadid who was honoring her mother, Yolanda Foster.

Yolanda and her 2 other children recently announced they have “chronic Lyme disease“.

Disregard For Human Life

 One man, “Dan K” insensitively remarked below the article, “Chronic Lyme disease doesn’t exist.  Please stop this ‘awareness’ campaign lol.” 🙁
celebrities with Lyme
photo courtesy Yolanda Foster Instagram

Mr. Dan K’s comments make my stomach turn.

One might say that the comments reflect poorly on him, but don’t affect the Lyme crisis. And there’s truth to that, to be sure.

But it also points to the stark difference in perspective between the Lyme patient who is struggling to survive and the vocal, yet uneducated person who seeks to bring others down when they are physically weak and hurting.

Callous comments like these perpetuate misunderstanding and lack of empathy for people who are fighting for their very lives.

They need:

  • support
  • hope that they can get better
  • proper diagnosis
  • timely and adequate treatments
  • appropriate insurance coverage of medical costs

For me, ignorant comments such as these strengthen my resolve to bring a voice to those impacted by tick-borne illnesses. But it’s also a good reminder that we need to check our sources before believing everything we read on the internet.

When I returned to read the article a second time I noticed his unkind remarks were removed. 

Living Out Lyme Disease On Reality TV

Yolanda has fought her Lyme battle in the public eye on a reality TV show, The Real Housewives of Beverly Hills. Although I’ve never seen the show (we don’t have cable TV), a friend told me about some episodes where she was very ill and receiving IV treatments for Lyme.
One of my doctors I see for LDI (low dose immunotherapy) is the same one she and her kids go to.

She recently left the show to focus on her health and “restoring privacy” to her family.

I appreciate all that Yolanda and others have done to advocate and bring greater awareness to the seriousness of Lyme.

Other Famous People With Lyme

celebrities and Lyme
Ticks can carry Lyme disease, which is caused by Borrelia burgdorferi bacteria.

In recent years, more celebrities (and famous people) have come forward about having Lyme:

  • Avril Lavigne
  • Former US President, George W. Bush
  • Daryl Hall, of Hall and Oates
  • Alec Baldwin
  • Ashley Olsen
  • Richard Gere
  • Ben Stiller
  • writer, Amy Tan
  • Debbie Gibson
  • Jamie Lynn Sigler

Some are still battling ongoing symptoms, while others who were promptly treated have, thankfully, recovered.

Avril Lavigne

In a recent interview with People magazine, Avril Lavigne said,

I felt like I couldn’t breathe, I couldn’t talk, and I couldn’t move. I thought I was dying.

If you have Lyme you might relate to this. When I was bedridden, in the depths of my illness I remember experiencing these same things and telling my husband I thought I was dying.

In the following video Avril Lavigne shares more about her experience:

video courtesy

The Takeaway

Celebrities have a platform to reach lots of people.

Some prefer privacy with their health struggles, and that’s understandable, especially when many of their private lives are photographed for the world to see.

But in the media-obsessed world we live in, celebrities have a unique opportunity to influence, encourage and educate others about Lyme. And this brings greater awareness, something which is long overdue and desperately needed.

Can you think of other famous people who have Lyme? Do you or someone you love have a tick-borne illness?

Please share your thoughts below in the comment section. I love hearing from you, friends!

If you would like to read more about Lyme disease you may want to check out:

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Is Chronic Lyme Disease Real? Part 1

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The Lyme Disease Controversy

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, 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 that.

False Truths
is chronic lyme disease real

Comments like these are simply not true 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 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).

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


Potato, potahto,

Tomato, tomahto.

I’m not saying the 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.

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.
  • Most chronically ill Lyme patient’s 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.

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?

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 with you when I receive it.

** Update:  It’s been nearly 3.5 months since I contacted 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?

Please share your thoughts below in the comments section.

Connect With Me Below:

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