What I Want You To Know About Late Stage Lyme Disease

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MAY IS LYME AWARENESS MONTH

May is Lyme Awareness Month and honestly, I’d rather skip this entire part of my story. However, I’ve been reminded that once upon a time, I told myself that when I “got better”, I would do what I could to help others in my situation.

Lyme is a tricky thing. Most people know what Lyme Disease is: you get a tick bite, there’s a bulls-eye rash, you take antibiotics, and you’re better. That’s acute Lyme.

Then there’s something much more complicated, scary and controversial called Chronic Lyme (Late Stage Lyme). Most doctors don’t believe there is such a thing. Late Stage Lyme occurs when you’ve been bitten and either the disease lies dormant and presents itself later after a big event (pregnancy, surgery, trauma, etc) or you never fully recover from your initial treatment from acute Lyme. Many doctors say that Chronic Lyme is not really Lyme. They claim it’s some other disease you haven’t figured out yet, like MS, Lupus, Rheumatoid Arthritis, etc.

So when I was diagnosed, not only did I have to figure out this complicated disease (and all of the co-infections that come with it), I had to fight for my right to even treat it. The Chronic Lyme world is often secretive and hidden, uncovered by insurance, and doctors are continually losing their licenses over prescribing “unnecessary treatments” such as long term antibiotics.

WHY AM I SHARING MY STORY?

I’m not writing to tell you the secret to curing Lyme disease or my three steps to wellness, because frankly, I’m still trying to figure out what in the world to do each time I have a flare up. This disease has had me in my lowest moments and strangely, let me experience some of the greatest moments in my life. Deeper friendships, a stronger marriage, an authentic faith.

Not a lot of Lyme sufferers can say these things. Many marriages end in divorce, faith is lost and hope is never found. I’m here to tell my story, and raise awareness for this disease that has led so many to despair and hopelessness and to let them know, you are not alone!

WHEN DID THIS START?

After the birth of my daughter in 2014, I began having back and chest pains so intense that I was unable to continue breastfeeding. My right arm was constantly tingling and throbbing. At times I felt like I was holding a vibrating cellphone when I wasn’t. Pain around my collarbone was so excruciating that I had trouble breathing. I got checked out by a hospital, several neurologists and a rheumatologist. I endured endless blood work, medication changes, CT scans, MRIs, EEGs, EMGs, and EKGs. No one had any answers for me. I was diagnosed with fibromyalgia (a disease of elimination). However, I always had lots of inflammation, which they admitted didn’t fit the diagnosis.

Over time, the disease progressed and most of my medications exacerbated my symptoms. I was left bedridden, unable to care for myself or my family. I started experiencing all sorts of neuropathy pain like twitching, tremors, numbness, tingling, migrating pain, and crawling skin. In addition, I had hair loss, rashes, panic attacks, blurred vision, paranoia, nausea, vomiting, fainting, air hunger, seizures and brain fog.

HOW WAS I DIAGNOSED?

I asked to be tested for Lyme disease, but doctors denied testing over and over again. They told me that the test was unnecessary and that Late Stage Lyme didn’t exist. One said that a “table would test positive” while a hospital refused because “Lyme isn’t in Texas”.

In 2017, I ordered the test kit that is supposedly the gold standard in the Lyme world, but not approved by the CDC. It took some effort finding a doctor to run the test, but when it came in, I tested positive for Borrelia (Lyme), Bartonella, and Babesia. After jumping through a lot of hoops, I got an appointment with an LLMD (Lyme Literate Medical Doctor). My husband and parents wheeled me in while I twitched and shook my way through the meeting.

WHERE AM I AT NOW IN THE PROCESS?

I’m still struggling, but mostly physically, which I prefer over the mental issues I used to deal with. Fortunately, I no longer experience brain fog or seizures, but constantly deal with migrating pain. I go through weeks at a time feeling great (because Tylenol covers the pain) and then weeks of a flare up where no medicine seems to help. I jump around trying to figure out the best treatment for this disease. I’ve been through everything from antibiotics, stem cells and homeopathic treatments.

We are at the point where my husband can work from home and stay with me during my flare ups. Five years in and we’re learning to not panic when I’m stuck in a wheelchair. I spend Sunday mornings loading up my pill case, which is now down to one instead of two!

This is not the life I had planned, but it’s what I’ve been dealt. In the past two years, I’ve been determined to make the best of it.

WHAT HAVE I LEARNED SINCE MY DIAGNOSIS?

I have learned the importance of reaching out to others for help and the benefit of honest conversations that lead to deep and meaningful friendships. I’ve learned the importance of finding purpose in the pain and not sitting and watching the days go by until you are “better”. I’ve learned that being a mother can be the biggest motivator to keep going.

Your faith is put to the test when life hits you hard, and you will either come out stronger in your faith or lose it all together. I had an experience one night that shook my world, and has been my comfort ever since. I am happy to say that because of my hardships with Lyme, I am now bolder and braver in my faith than I have ever been.

WHAT DO YOU NEED TO KNOW ABOUT PROTECTING YOURSELF?

Before I was diagnosed, I knew nothing about the world of Lyme. So little, that I thought the only reason you needed to get ticks off your skin was because they’re gross! I didn’t worry about ant bites or bee stings beyond the fact that they hurt, and ticks were no different.

Protect yourself. Wear long pants and boots in wooded areas. Spray with Deet (the good outweighs the bad on this I’ve been told over and over again). If you do get a tick, the sooner you get it off, the better! But make sure you get the whole thing, and don’t leave the head stuck in your skin. Some doctors will even send out the tick to see if it tests for diseases, so save it if you can.

WHAT DO I WANT OTHERS TO KNOW ABOUT THE LYME WORLD?

Educate yourself on the realities of Late Stage Lyme to help end the controversy that prevents so many of us from getting the treatment we need. Many of us are unable to afford treatment because insurance won’t cover anything beyond the standard 14-21 days of antibiotic treatment.

The standard tests are only 40% accurate and only 20% of people get the bulls-eye rash. Because it is scoffed at that tick bites can actually reek havoc years later if not treated properly, doctors who treat late stage Lyme are persecuted and at risk of losing their medical license. Lyme patients are often ridiculed, lonely and frightened…on top of being extremely sick.

Most Lyme patients are written off as mental cases (I have been) and because of the lack of help for the realities of Lyme, the suicide rate of this disease is shocking. Help spread awareness of the reality of this disease and compassion on those who believe they have it.

WHERE CAN YOU LEARN MORE?

Here are a few places to start:

BEFORE YOU GO…

Are you a Lymie? I would love to hear from you? I may not have answers for you, but I can definitely offer some encouragement. Send me a message and let’s lean on each other to find hope in this strange disease.

For more posts on Lyme Disease, check out How Faith Can Help You Overcome Fear and Getting Out of Bed.

Stay hopeful friends!

2 comments

  1. Thank you so much for this post. Too often even in NY, it is seen only as an immediate disease, antibiotics are given and done. I’ve had a few friends there who’ve had it. No lasting effects that they are aware of.

    I met someone else who had this and they were seeking alternative medicine too. Keep telling your story, and never lose your voice! I’m so thankful for you Amy!

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