woods forest trees deer ticks
In the Family

The misunderstood disease that can ruin your life

Let me begin by saying that I have no medical training whatsoever, and I cannot give you any concrete reason for taking my advice at the end of this post.  That is not going to stop me from offering my strong opinion on this matter though.  I can only tell you the story of our experience with the misunderstood disease that can ruin your life: Lyme disease.  This is our personal story, but sadly we have seen it repeated in friends and with others who have shared their experiences with us.  We put it out there with the hope that soon more medical professionals (and the general public) will recognize this disease for what it is and figure out how to help those suffering with it.

My husband, Tom, has worked outside his entire life. He has always been in good health and he loves being out in nature.  At least a decade ago his knee began to bother him regularly. Over the years numerous doctors checked it out, offering him little relief. Finally he was told he’d need surgery because it was just worn out. That was not what he wanted to hear, and he decided he would just live with it.

August 2015

In August 2015, Tom was pulling a bush out of a client’s yard. When he finished he noticed his hand and arm were dirty, so he brushed the dirt off. But the dirt didn’t come off, and on closer inspection he could see the specks of dirt were moving! He realized there was an entire nest of deer ticks on him! They began biting him. He rubbed and washed them off immediately. He stripped and showered as soon as he got home. We checked him thoroughly and only found one tick embedded. We removed it. He visited his doctor, who put him on doxycycline for 2 weeks based solely on the sheer number of tick bites. She tested him for Lyme disease then and also when he finished the antibiotics, as she did yearly due to his work.  As always, the tests were negative. He seemed fine and life went on.

December 2015

In December of that year, Tom had chest pain for a couple days. He thought it was indigestion. Finally he decided to be checked out. Upon arrival and testing in the ER, we were told Tom had all the indications of a massive heart attack. Believe me, this is the last thing a 41-year-old mother of 3 (or anyone!) wants to hear about the man she loves. They began rushing around and hooking him up to everything. The chaplain came to talk to me and it was quite surreal.

Once much more testing was completed, though, it was determined not to be a traditional heart attack since all his pipes were clear. Instead, he was diagnosed with myocarditis, an infection surrounding his heart. During his hospital stay, doctors were unable to determine the cause of the infection. They assumed it was viral and wanted to let it run its course. I mentioned it on Facebook and found everyone we knew who’d had experience with myocarditis also had had Lyme disease. It took some begging, but we finally convinced a doctor to treat Tom for Lyme “just in case” that was the cause. Once that treatment started, Tom’s condition improved.

June 2016

Six months later, Tom had a follow up visit with the cardiologist, who was amazed at his recovery. Around this time, we were celebrating summer with barbecues and adult beverages with friends, and Tom noticed that after drinking two beers he felt sick. The next morning he woke up with a hangover – from two beers!  Tom is Czech and Irish: beer is in his blood!  The next time, he actually got sick to his stomach from a couple beers.

He also became unable to work a complete day during this summer. He would come home from work and need to nap. This went on for a few months. The cardiologist had said he was in great shape, but he felt worse than ever. He saw his regular doctor who did the standard blood work, plus the usual Lyme testing, and he was diagnosed perfectly healthy. That didn’t change the fact that he was thoroughly exhausted, constantly sore, and extremely depressed.

November 2016

In the fall a friend suggested Tom visit the doctors her children were seeing for their Lyme disease. They were a medical doctor and a naturopathic doctor who had a clinic nearby a few days a week. Tom, who is skeptical by nature, said he’d go but only because her kids had good results and because he was feeling desperate. He had low expectations and planned to take everything they said with a grain of salt. That’s just how he is.

The doctors examined and talked to him for an hour, asking him his entire history, and then did extremely thorough bloodwork. His blood showed he had three bands of Lyme disease (not enough to score “positive” on a standard Lyme disease test, but three more bands than you should have!) as well as another tick-borne co-infection. They treated him with a series of antifungal, antiviral, herbal, and antibiotic medications. He got worse from the buildup of dying bacteria in his blood – called a Herxheimer reaction – before he got better.

May 2017

By the end of spring Tom was finally much, much better. He felt so good, and the knee that supposedly required surgery felt brand new! This leads us to believe he’d unknowingly had Lyme disease for years, despite dozens of negative test results. He continues to take supplements and occasionally herbs to maintain his health.

deer tick penny lyme disease
This is a deer tick. As you can see, they can be as small as the letters on a penny.
July 2018

Because the disease went without proper treatment (a course of doxycycline less than 3 weeks usually doesn’t do the trick, despite what most doctors say) for months or possibly many years, Tom’s symptoms do recur.  He had another bout with symptoms again this past summer.  The doctors are good at monitoring his blood, and he is down to one band of Lyme. Thankfully some antibiotics usually knock the symptoms down, but the Lyme disease will probably never be gone.

Get yourself treated ASAP

We have seen how Lyme disease and other tick-borne illnesses affect people other than Tom as well. The symptoms vary from person to person and range in severity from one minute to the next. My very strong advice is —

• if you have ANY suspicion of Lyme disease, or

• if you’ve ever had Lyme disease and now have a nagging symptom, or

• if you have ANY undiagnosed illness, (despite any negative Lyme test you may have had AND no matter where you live)

FIND A LYME-LITERATE DOCTOR (a physician who is familiar with the vast range of symptoms that may indicate infection at various stages of the disease and get CHECKED OUT ASAP.  Time is ticking (intentional bad pun)!  In our area the Lyme Disease Association of Delmarva has a great amount of information, and an internet search should be able to help you locate resources in your area. We wish you the best. Please feel free to share any Lyme experiences you’ve had, though it is our sincere hope that you never have any Lyme experiences!

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