Lyme Disease: what you need to know

Today's topic is more than just informational, it is very personal to all of us at Helen Jon. Our founder, Gwyn Prentice, has chronic Lyme disease and has been undergoing treatment for it since late May. She is getting better, but it has not been easy. In the weeks to come, we will talk with Gwyn and hear from her about the ugly truths of living with Lyme, the brutal, labyrinth-like complexities of treatment, and ultimately, how she hopes to defeat it. 


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Lyme Disease. 

We've all heard of it. We probably know that it originates with a tick bite, that there may be a bull’s-eye rash, and that we absolutely do not want to ever get it. But beyond that, we might not understand the full scope of what this disease really is, the intensity of its effects, and how many people might be walking around with it and not even know.

In this blog, we are providing useful, important information about Lyme – how to prevent it, how it can be accurately diagnosed, and things to consider should you unfortunately contract it.


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A Primer on Lyme

 

Lyme is on the rise.

  • The US Centers for Disease Control and Prevention (CDC) estimates that each year 300,000 US residents contract Lyme. Given how inconsistently the condition is diagnosed and reported, it could be far greater, as many as 3 million cases a year.
  • The official number of new US cases has been growing at double-digit rates. 
  • It’s more prevalent than HIV and breast cancer combined.
  • Fewer than half of those living with Lyme recall seeing a tick bite or the telltale bull’s-eye rash. The deer tick (which is often the source of the infectious bite) is smaller than a poppy seed. Yet after the bite happens, Lyme attacks the body, leaving the victim unaware.

Misdiagnosis is common.

  • Part of the problem is that Lyme “is the great imitator.” It’s a multi-systemic disease. There aren’t specific symptoms unique only to Lyme; therefore, it can look like many other things, including stroke, multiple sclerosis, Alzheimer’s, fibromyalgia, vasculitis, neuropathy, and more.
  • Too often, the symptoms are written off. Night sweats, for instance. You’re a woman in your 40s, you think maybe it’s perimenopause. Or, your joints hurt, your hips, your knees. You think, maybe my spin class is too hard, maybe I shouldn’t be working out in this specific way. Your brain is foggy, your memory is not what it used to be. You might write it off as being busy and over extended. You see the pattern.

Testing is quite flawed.

  • You visit your primary care doctor, your pediatrician, or an ER for a Lyme test, but the most commonly-administered tests are less than reliable, giving a high percentage of false-negative results. The tests given by most doctors will only show Lyme's presence if you've just been bitten, but not if you've been carrying Lyme for an extended period of time.
  • There are accurate tests to detect later stages of Lyme, but you did not know about these. (Now you will!)

Its effects can be debilitating.

  • You live with these symptoms, suffering, but without a proper Lyme diagnosis. The longer it takes to get this diagnosis, the longer the Lyme bacteria has a chance to make itself at home in your body, wreaking havoc on your brain, your nervous system, your whole sense of well being. The disease progresses. And, often the co-infections from Lyme are far worse than Lyme itself.
  • The Lyme bacteria is stealthy, incredibly smart, and very hard – but not impossible – to treat. These “bugs” are crafty, tireless and insidious. Often leading to an exacerbated problem: Patients’ symptoms are being treated, the root cause continues to thrive.


What to do if you think you might have Lyme (or know someone who is exhibiting symptoms and not feeling “right”).

 

First things first, if you think you have been bitten by a tick, treat the bite.

  • Remove the tick properly.
  • If at all possible, save the tick once removed and have it tested for Lyme and co-infections.
  • Do not wait until you get symptoms. Treatment should start immediately.
  • Have your doctor prescribe an antibiotic. (*This needs to be administered for a 6-8 week period, not 28 days. The CDC confirms that those treated for 28 days have persistent bacteria; a 6-8 week course of antibiotics is necessary.)

If you are experiencing symptoms that relate to Lyme, but do not remember having a tick bite or seeing the telltale bull’s-eye rash, explore the possibility that you could have Lyme. Think of it as “checking the ‘Lyme’ box off the list.”

Connect with Lyme Support Groups and/or Friends.

Reaching out to friends and acquaintances who have knowledge and/or experience with Lyme can be one of most important variables in your Lyme journey. Often times, you need your “person” to help you navigate, understand, and get through difficult medical diagnoses, treatments, and hopeful recoveries.

Gwyn does not know what she would do or where she would be without her “person” and very dear friend, Becky Gust. Becky traveled the road of Lyme before Gwyn and has helped her immeasurably. Without Becky’s knowledge, perspective, and experience, Gwyn might not have opted for the additional testing which definitively proved she had later-stage Lyme. Now, thanks to Becky, Gwyn has an accurate diagnosis, a doctor who is Lyme-literate, and a treatment plan. Becky has been an advocate for Gwyn, a listening board, and a tremendous friend. The importance of finding a support network or person cannot be overstated.

For more information on Lyme, read on. One little bite can do so much damage. Knowledge and understanding of Lyme can help.




Resources

 

Lyme Tests

An accurate diagnosis is the first step to getting proper treatment. These tests are easy to administer, and most importantly, accurate.

Lyme-Literate Doctors (LLMD)

Research “Lyme-Literate,” doctors who are educated in the diagnosis and treatment of Lyme disease.

Memoirs/Books 

Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me, by Ally Hillfiger

Believe Me: My Battle with the Invisible Disability of Lyme Disease, by Yolanda Hadid

Sick: A Memoir, by Porochista Khakpour


Documentaries

Under Our Skin

Under our Skin 2: Emergence

 

More Posts

1 comment

  • Donna: July 09, 2018

    1. will pray for you….believe in your full recovery….it WILL happen; remember, there is a reason they call Western medicine “practicing medicine”
    2. looking forward to all of your posts on this subject and the power and importance of sharing this information is so important
    3. I am recovering from essentially being bedridden, so now out and about, walking my dog, exercising in the pool, etc……it is Helen Jon….24/7…….don’t know what i would do during this past 5 months….HELEN JON ROCKS!!!!!!!!

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