In Response to *That* New York Times Lyme Disease Article

Close up of a tick. — Photo credit: Pexels.com

Through social media, I became aware of a New York Times Lyme Disease article that was published on June 27th. When I read it, my heart sank.

A Step Backwards for Lyme Disease Awareness

Reading it felt like a huge step backwards for Lyme Disease awareness. And, from a personal viewpoint, the whole piece trivialised and invalidated my experience of Lyme Disease.

Reading it was upsetting and frustrating. My initial response was to step away and forget about it.

However, the more I thought about what was written the more frustrated I became.

I want to add my voice to the discussion to offer some insight into why I feel the article is problematic and why Lyme Disease must be taken seriously.

The Premise of the New York Times Lyme Disease Article

The article is written by a mother whose son Akash fell sick with Lyme Disease. Initially, Akash complained of aches in his legs and a few months later he awoke with a swollen knee.

Tests followed and doctors thought his symptoms may have been due to juvenile arthritis, autoimmune or inflammatory conditions.

Luckily for the family, the father played squash with a doctor who was Lyme aware.

A couple of days after this encounter, Akash received a positive Lyme Disease test result and he was given a prescription for antibiotics.

Thankfully, Akash is now fine and I am incredibly glad to hear that.

For I know– and too many others know– that, had that chance encounter not happened, the outcome could have been completely different.

The Problem with the New York Times Lyme Disease Article

This is a story of a boy who contracted Lyme Disease and was very fortunate to be diagnosed and treated before symptoms had progressed.

Yet, this was never acknowledged or discussed.

Instead, the author has written this article from the viewpoint that Lyme Disease is a simple bacterial infection; that it is nothing to be concerned about.

This is where I have a problem.

If the premise of the article was to show that not all cases of Lyme Disease go onto cause long term illness, so long as they are promptly diagnosed and treated I would not have an issue.

After all, that’s the ideal situation! Lyme Disease needs to be diagnosed and treated in the acute, early stages of illness.

However, the author has very much taken the attitude of this is what happened to our family so it is applicable to everyone.

The Article Perpetuates A Lyme Disease Myth

She has used her son’s story to perpetuate the myth that chronic infection of Lyme Disease does not exist.

That Lyme Disease is, and I quote, “the best thing it could be” because “it’s eminently curable”.

As much as I wish this were true, sadly it is not always the case.

Misleading Statistics

Unfortunately for too many, and contrary to what a lot of people think, Lyme Disease is not always easy to diagnose.

It is stated in the article that 80% of people infected with Lyme Disease present with a bull’s eye rash.

This symptom is diagnostic of Lyme Disease and means people should receive immediate antibiotic treatment without waiting for test results.

However, this figure is disputed and the percentage of people who do not develop a bull’s eye rash is thought to be much higher than 20% of cases.

Too much emphasis is placed on the bull’s eye rash being the key symptom of Lyme Disease and this delays correct diagnosis when it is not present.

Not Everyone is As Lucky as Akash

From my understanding, Akash did not develop a bull’s eye rash.

Evidently from what the author writes his doctors were not thinking of Lyme Disease when they were investigating his swollen knee.

The author needs to consider that not everyone is as lucky as Akash. Not everyone has a family friend who is Lyme aware and suggests getting tested.

There are thousands and thousands of people who have been misdiagnosed or whose doctor didn’t even consider Lyme Disease.

Imagine if that chance encounter Akash’s father had did not happen.

His “medical (mis) adventure” as the author describes it may well have continued and his untreated Lyme Disease could have progressed.

There are children out there right now who are missing school, unable to participate in life and suffering from debilitating symptoms.

I wonder what his mother would have written if that was Akash’s story?

Thousands go On To Develop Late Stage Lyme Disease

For a second though, entertain me and let’s assume the 80% statistic in reference to the bull’s eye rash is correct.

It’s estimated that 300,000 people are infected with Lyme Disease annually in the United States.

That means that at minimum 60,000 people do not get a bull’s eye rash even though they are infected. Which means 60,000 each year are at risk of not receiving a prompt diagnosis and treatment.

These are the people who may go on to develop late disseminated Lyme Disease. And that’s in the US alone.

That’s a shocking statistic. And, it’s actually likely to be much higher.

Lyme Disease Testing Is Far From Perfect

Let’s also not forget the fact that Lyme Disease testing is far from perfect.

Most tests available only test for a handful of species of Borrelia (the bacteria that causes Lyme Disease).

Fun fact: there are 52 known species of Borrelia and at least 12 are known to cause Lyme Disease symptoms.

Many don’t account for other tick-borne pathogens that can be involved in Lyme Disease either.

Bottom line: if you are fortunate enough to have a doctor who thinks to test for Lyme you may receive a negative result even when you are infected.

Akash was very fortunate that he tested positive.

Not everyone is that lucky and the battle to receive a correct diagnosis can be long and arduous.

The Truth Is Too Many People Are misdiagnosed or Undiagnosed

Regardless of how it happens (missed diagnosis, misdiagnosis or false negative test results), thousands and thousands of people each year suffer from undiagnosed and untreated Lyme Disease.

This is not “the best thing it could be”. This is not “eminently curable”.

As I mentioned, left untreated Lyme Disease can progress.

There are actually three stages of Lyme Disease: early localised disease, early disseminated Lyme Disease and late disseminated Lyme Disease.

The latter is incredibly serious and not to be taken lightly. NHS Scotland states that the following symptoms can develop after months or years if early treatment is not given:

pain and swelling in the joints (inflammatory arthritis)
problems affecting the nervous system – such as numbness and pain in your limbs, paralysis of your facial muscles, memory problems and difficulty concentrating
heart problems – such as inflammation of the heart muscle (myocarditis) or sac surrounding the heart (pericarditis), heart block and heart failure
inflammation of the membranes surrounding the brain and spinal cord (meningitis) – which can cause a severe headache, a stiff neck and increased sensitivity to light

Does heart block, heart failure and meningitis sound harmless to you?

The NHS Scotland website also states that “some of these problems will get better slowly with treatment, although they can persist if treatment is started late.”

Some improving and some persisting doesn’t equate to a simple infection that is easily cured does it?

What Happens When you are left with persisting symptoms?

Unfortunately, doctors don’t know what to do when people are treated too late and are left with persistent symptoms.

The reality is you are left to live with them without any help.

These symptoms can be disabling and interfere with the ability to perform everyday tasks that healthy people take for granted.

Lyme Disease has turned too many people’s lives upside down. They experience trauma, failure by the medical system and incredible loss.

Not to mention, should you advocate for yourself and seek treatment this has to come out of your own pocket.

Imagine being incredibly sick, racking up debt to access the treatment you desperately need and not knowing if you will ever recover?

That’s the reality of Lyme Disease for many.

The Author Got It Wrong in the New York Times Lyme Disease Article

To give the benefit of the doubt, I think the author’s point may have been that she thinks people shouldn’t live in fear of Lyme Disease.

However, in my opinion, she has gone about it entirely the wrong way.

The author’s approach of my son is fine so don’t worry is problematic. And, so is the viewpoint of the doctors who are quoted.

Had the outcome been different for Akash I am sure this article would have taken a different path.

I just wish the author had thought to consider the stories of other patients and of the doctors who are trying to help them.

Without better education and awareness (both publically and within the medical community) people will continue to have their lives ruined by Lyme Disease.

This New York Times Lyme Disease article is a step in the wrong direction.

My biggest concern with this article is that people may read it and, not knowing otherwise, write Lyme Disease off as something they don’t need to consider.

The truth is people need to know and understand about the symptoms and potential implications of a Lyme Disease infection.

People don’t need to live in fear or stop enjoying the outdoors. But they do need to be tick aware and take steps to protect themselves.

A Note On Chronic Lyme Disease

To end this blog post I want to quickly talk about the term chronic Lyme Disease.

Some doctors seem to take issue with the word “chronic” and this seemed to be a point in the article. A stigma has been attached to it for reasons I fail to understand.

Chronic simply means long term.

It is known that Lyme Disease can persist if untreated and, as mentioned, there are three stages: early localised disease, early disemminated Lyme Disease and late disemminated Lyme Disease.

The latter can occur weeks, months or years after infection and if that’s not long-term I don’t know what is?

Most patients use the colloquial term “chronic Lyme Disease” to mean late disemminated Lyme Disease.

Some of these patients have never received any treatment for Lyme Disease. Others haven’t received correct or sufficient treatment.

And, there are some patients who received but did not respond to antibiotic treatment.

This is the group who are often persecuted by some doctors because they are told they cannot still have a Lyme Disease infection after receiving antibiotics.

This is despite scientific literature saying otherwise.

The narrative that Lyme Disease is a simple infection and that chronic Lyme Disease does not exist is simply untrue.

If you would like to share your opinion, I welcome your thoughts in the comments below. You can also get involved on social media by sharing your Lyme Disease story and using the hashtag #nytimesthisislyme.

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In Response to That New York Times Lyme Disease Article