My Backstory with Lyme – Part 2

As I said in my previous post, from 2003 to 2012, my “issues” were gradually improving. I was actually feeling like my normal self and enjoying life again. Periodically, I’d have some flare-ups with anxiety or depression or my horrible headaches would pay me a visit for a season, but they didn’t last. Then, in 2012, everything changed. Some very odd symptoms manifested and over the years they steadily became more intense and more frequent …

. . . chronic left-sided headaches down into the left-side of my face

. . . feeling dizzy or disoriented

. . . chronic fatigue that hindered or kept me from work

. . . frequent nausea

. . . low energy

. . . irritable bowels

. . . horrible muscle and joint pain that migrated

. . . frequent muscle twitching

. . . facial twitching (that was super annoying)

. . . insomnia (even though I was completely exhausted, I couldn’t sleep)

. . . memory issues (I’d forget basic stuff like names of friends, my zip code, etc.)

. . . anxiety (sometimes feeling like I wanted to jump out of my skin)

. . . depression

. . . And did I mention headaches? … HORRIBLE CHRONIC HEADACHES!

Then I’d have weeks where I’d feel like my normal self. My symptoms would lift and I’d get a false hope that all is well. Then, for no apparent reason, the tsunami would return … sometimes for days and sometimes for weeks. It was SUPER frustrating. I desperately wanted to know what the heck was going on and I wanted it fixed!

During this time in my life, I was living in Missouri and at least once per week I was in the woods mountain biking. Tick bites were definitely par for the course. On June 4, 2013, I recorded in my journal that I removed an embedded tick from my upper torso. This was not unusual. I never went to the doctor because a bulls-eye rash never developed. Growing up, I was led to believe that if there’s no bulls-eye rash then you’re good to go.

THAT’S A BUNCH OF BULL!

Now that I’ve become a student of Lyme Disease (out of necessity, not desire), I’ve learned that the whole bulls-eye rash thing is 50/50. Experts say the bull’s-eye rash known as “erythema migrans” can be absent in at least 50% of Lyme Disease cases. So I have no way of knowing if that particular tick bite on June 4, 2013 infected me with Lyme Disease and co-infections (by the way, ticks are carrying way more than must Lyme Disease) … nor do I know which ticks carried Lyme Disease that bit me all throughout my life. All I know is that at least one of them definitely carried Lyme and co-infections because in 2017 I tested POSITIVE … but I’m getting way ahead of myself so let’s back up …

On Sunday, April 12, 2015 … something really strange happened to me. I was speaking in Indiana at a weekend youth event, and for the most part, I was having a great weekend with no major symptoms. I slept great on Saturday night and woke up on Sunday morning optimistic and ready to finish the weekend strong. I had one last teaching session to complete. As I was leaving my hotel room I was suddenly hit with MAJOR fatigue … I’m mean MAJOR fatigue … like someone shot me with a tranquilizer gun! It didn’t make sense because I had just slept a solid 8 hours. I remember repeatedly saying to myself, “What the heck is wrong with me?” I went to the local Starbucks hoping a venti coffee would pull me out of the abyss, but it didn’t.

The strange fatigue made the entire day a blur. I remember constantly praying throughout that day … “God help me through. I can’t do this without You!” All I wanted to do is cancel everything, go back to my hotel room, and SLEEP! That entire day I really struggled as I interacted with people from the church. It was like I was in some sort of dark fog. My mental comprehension was like molasses. Later that afternoon, nausea decided to join the party, and I couldn’t shake it. As I said, I kept thinking, “What the heck is wrong with me?” and I kept praying, “God help me through. I can’t do this without You!”

I was scheduled to teach one last time that evening, but I didn’t think I could do it. An hour before the event began, I finally mentioned to the Youth Pastor that I wasn’t feeling well and asked him if I could go lay down in his office to rest before it was time for me to teach. Thankfully, he was cool with that. As I laid on the couch in his office, I continued to beg God for His help and I also texted several friends to pray for me.

When it was finally time for me to take the stage and teach, it was nothing short of SUPERNATURAL … All of the strange symptoms suddenly vanished. All of them! God totally gave me the energy and mental clarity that I needed to teach with boldness and enthusiasm. Never underestimate the power of prayer! Over the many years of battling late-stage Lyme Disease, I’ve used it to get me through many incredibly difficult days -especially when I’ve been on the road teaching. My symptoms easily flare-up when I’m dealing with the stress of traveling and public speaking.

The next day, as I was driving home from Indiana to Southwest Missouri, I was mentally trying to make sense of it all … “What the heck happened yesterday? … Why did I all of a sudden feel like someone drugged me? … Am I sick with something? … Could that have been some sort of demonic attack to keep me from teaching?”

FYI = I realize that some of you reading this don’t believe in the reality of the paranormal. Things like “demonic attacks” have no place in your educated/scientific mind. If that’s you, I want to encourage you to check out an insightful and startling article by Dr. Richard Gallagher, a board-certified psychiatrist and professor of clinical psychiatry at New York Medical College – link here. It may completely change your view regarding the demonic. If not, no worries. It doesn’t offend or anger me.

Anyway, as I was saying, I was making the long drive home from Indiana to Southwest Missouri and mentally trying to make sense of everything that happened the day before. Clueless and frustrated, I called my friend Clayton King to see if he could help me figure things out. After I was done rambling for 20 minutes, he asked me a series of questions about my diet, caffeine intake, sleep schedule, exercise routine, etc. He didn’t really have any answers for me. Honestly, I didn’t expect him to. I think I mostly needed a friend to vent to, and Clayton isn’t just a friend, he’s also someone who understands the pressure that comes with being an itinerant evangelist/teacher. He’s been a mentor to me for many years. As our conversation ended, he prayed for me but also strongly advised that I go see my doctor when I returned home.

I came home and immediately scheduled an appointment with my Primary Care Physician. I wanted him to completely rule out things like diabetes, hypothyroidism, fibromyalgia, even cancer. I came to the appointment with a list of all of the bizarre symptoms that were increasingly plaguing me. He ordered a basic blood test, but not a Lyme Test. At this time, Lyme Disease never crossed my mind, nor did it cross his mind. Two weeks later, the results came back and my PCP assured me that everything looked normal. He then tried to convince me that all of my symptoms were most likely the result of stress and anxiety. He advised me to reduce my stress and take my anxiety meds. Because he’s a doctor, I just accepted his diagnosis as the truth and followed his advice (reduce my stress and take my anxiety meds). After that conversation, I did all I could to fix my “stress and anxiety problem.” Daily I devoured books, articles, and various podcasts on the subject. I even went and saw a counselor. My attitude was … “Damn it, I’m going to fix this stress and anxiety problem! I want my life back!”

At the end of 2016, our family relocated halfway across the country from Missouri to Maryland. Maryland is where my wife and I grew up, and we felt it was time to be closer to family and old friends. After the dust settled from the big move, I began working for a friend’s home improvement company when I wasn’t doing my ministry stuff.

My journals from that time period reveal that my symptoms were increasing and they began hindering my work. Joint and muscle pains became much more frequent and more intense. Daily I had to wear wrist and elbow braces as I worked, and I also took 800mg of Ibuprofen in the morning just to try and lessen my pain so I could work.

My left-sided headaches had become chronic. I hardly ever had a headache free day. I’d wake up with a headache and go to bed with a headache. Pain would shoot from my left temple area down the left side of my face, and sometimes the whole left-side of my face felt would feel numb. Sometimes even the left-side of my tongue would ache. I know that sounds crazy, but it’s the truth. What really scared me with my headaches is that they made it difficult to think and articulate. For the first time in my my life, finding the right words and actually saying them wasn’t easy for me.

To say the least, I was frustrated, discouraged, and becoming more and more irritable. I felt like I was losing who I was. My productivity was down by at least 50%. My irritabillity was definitely negatively affecting my relationship with my wife and kids and I hated that. In my journal I wrote, “How can all this be stress and anxiety? Something else has to be wrong with me! Please God, heal me! I don’t know what to do or who to turn to.”

God answered … In February of 2017, I was teaching at a winter youth retreat in New Hampshire, and in one of my lessons I began sharing about my daily struggle with all of my weird symptoms. After I got done teaching, a lady leader asked me if I’d ever been tested for Lyme Disease. I said no. She asked if I’d ever been bitten by a tick. I told her multiple times throughout my life. She looked at me perplexed and asked why I’d never had a Lyme Test? I said because I never saw a bulls-eye rash. She was adamant that `I should get tested when I returned home and she then began telling me about her own long and painful battle with Lyme Disease. She had battled it for many many years. To my surprise, many of her symptoms were identical to mine. I was baffled, but curious … “Could I really have Lyme Disease? Is that what’s been causing all of this for all these years?”

In March of 2017, I met with my new Primary Care Physician and asked her to test me for Lyme Disease. She seemed reluctant, but did it. She just wanted me to have a sleep study done. In my head, I was like, “A sleep study? What the $#%@ are you talking about? You think all of my issues are simply the result of not sleeping right? Are you freggin’ kidding me?”

A few weeks later, the test results came back. The first thing that was noted is that I tested POSITIVE for reactivated EBV (Epstein Bar Virus). I had it in high school and now it was back, flaring-up in full force. No wonder I was utterly exhausted all the time. Then, lo and behold, the ELISA Test for Lyme Disease came back POSITIVE, and the Western Blot Test for Lyme Disease revealed that I had 4 out of 10 POSITIVE indicators for Lyme Disease.

So I looked at my Primary Care Physican and said, “So I have Lyme Disease?” She said, “Not technically.” She then informed me that the CDC (Center for Disease Control) says that a person must have not only a POSITIVE ELISA Test, but must also have at least 5 out of 10 POSITIVE indicators on the Western Blot Test for that person to be diagnosed with Lyme Disease. My Primary Care Physician looked at me and matter-of-factly said, “So you don’t technically meet the criteria for Lyme Disease.” I said, “But what about the ELISA Test that showed the presence of Lyme antibodies in my system? What about the fact that I’m positive for 4 out of the 10 indicators on the Western Blot Test? And what about all my weird chronic symptoms that fit the profile for someone with Lyme Disease?” She looked at me and simply said, “It doesn’t matter. You don’t meet the CDC’s criteria, therefore, you don’t actually have Lyme Disease. I recommend that you go see a neurologist about those headaches and go get that sleep study done.”

I was done with her. I went and found a new Primary Care Physician who wasn’t so narrow-minded, and (above all) I decided that I was going to take charge of my health instead blindly following everything I was being told by the medical establishment. I decided that I was now my own Primary Care Physician, and I decided that I would begin researching Lyme Disease like I was working for a PhD. The very first thing that struck me as I began my research was the fact that many top medical experts vehemently disagree with the CDC’s standards for diagnosing Lyme Disease. The latest research overwhelmingly reveals that the CDC’s standards are outdated and just plain inaccurate. Of course, insurance companies love the CDC’s current standards for diagnosing Lyme Disease because it means that the millions of people suffering from it don’t receive any insurance coverage to help with it because they the CDC says they don’t technically have it.

Something has to change with this … and soon! There are now an overwhelming amount of respected medical doctors, researchers, and organizations who are speaking up and fighting for the CDC to change their standards because of what the latest research reveals about accurately diagnosing Lyme Disease. Personally, I think the big dawgs at the CDC are in bed with the big dawgs at the insurance companies … and sadly, that’s why nothing has changed!

Through my research, I also learned that my ELISA test revealed that the Lyme antibodies in my system were not new. They had been in me for quite some time. Meaning … I didn’t just recently contract Lyme Disease in 2017. This made sense with all that I’d been going through for so many years. I know it sounds strange, but I actually felt a HUGE sense of relief knowing that I had Lyme Disease … YES! Now I know what it is, and we can get this #$%&@ disease out of me with some antibiotics or something!”

Dude, I had absolutely no idea what I was in for!

I immediately contacted the lady leader (Meagen) who I met in New Hampshire (the one who told me to get the Lyme Test). I told her l had Lyme Disease like it was some sort of good news. She was thankful that I finally had a diagnosis, but she wasn’t excited for me because deep down she knew what I was in for. The LONG and extremely DIFFICULT journey towards healing late-stage Lyme Disease was about to begin and she knew it was going to rock my world.

At that time, I was so utterly clueless about Lyme Disease and how to treat it. At various times, I’d text Meagen or my friend Stephanie who also battled Lyme Disease for many years, and I’d grill them with all sorts of questions about it … “Did your legs twitch too? What about your face? Did that twitch? How bout chronic headaches? How do I get rid of them? Is there an essential oil for that? What about anxiety? Did Lyme make you feel anxious? Did you get dizzy?”

Meagen and Stephanie were always gracious to respond. They both ended up becoming incredibly encouraging friends (literal lifelines). More than once they both sent me packages of DoTerra Essential Oils with personalized notes on how to use each one of them (I’m talking hundreds of dollars worth of DoTerra Essential Oils). I tried to pay them, but they wouldn’t let me. Meagen said that many people helped her through her Lyme Disease battle and she was just “paying it forward.” Stephanie also just wanted to be a blessing to me. It blew me away. Who does that?

Also, when I would go various places around the country to teach, Meagen and Stephanie would let me know that they were praying for me because they knew how bad I was hurting with Lyme, and they both knew from personal experience how hard it is to put on a happy face when you’re around people and they couldn’t imagine how hard it must be doing it up on a stage. Prayer literally got me through each time. I came so close to backing out of numerous speaking engagements right before I was scheduled to take the stage, but God somehow got me through each one of them. I can assure you it was not my inner strength, talent, grit, or whatever. Prayer. That’s all I can say.

Big shout out to Meagen and Stephanie! God used both of you at just the right time. No one should ever have to go through Lyme Disease or any other chronic illness or disability alone!

I will continue the rest of my backstory with Lyme Disease in my next post! Thanks for reading thus far. Feel free to leave a comment or ask questions. My email is Jason@Narrowtrail.com

If you’re battling Lyme Disease or some other type of painful chronic illness or condition, my goal is to be some sort of encouragement to you. At least you’re seeing that you’re not alone in this battle. Literally millions of others around the world are suffering too, and many of them have it far worse than you and I … so don’t lose hope and never give up the fight for your health! It can get better, but everyday you have to choose to be optimistic and keep battling … research, research, research … You be your Primary Care Physician. Take those vitamins and herbal supplements, improve your diet, exercise frequently (even if it’s just a walk), get under the care of a Lyme Literate Doctor, pray, meditate, detox, journal, get in a support group, talk to a good friend, don’t bottle things up, etc.

I want to leave you with one of my favorite quotes from Dr. Viktor E. Frankl, an Austrian Neurologist and Psychiatrist who also happened to be a holocaust survivor. He endured multiple German Concentration Camps. His international bestselling book, Man’s Search for Meaning is one of the top 10 books I’ve ever read in my life (and I’ve read a lot of books). Let this truth sink in and let it motivate you to change your mindset/attitude to what’s happening to you!

The one thing you can’t take away from me is the way I choose to respond to what you do to me. The last of one’s freedoms is to choose one’s attitude in any given circumstances!

Victor E. Frankl, Man’s Search for Meaning.

Battling with you,

Jason

  • I’m not a medical professional. The content of BattlingLyme.com is for informational purposes only. The content is not intended to substitute for professional medical advice, diagnosis, and treatment. Always seek the advice of your physician or other qualified health provider with any questions or concerns you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on BattlingLyme.com

2 thoughts on “My Backstory with Lyme – Part 2

  1. I am so sorry you have to go thru this. It is a horrible battle.

    Thanks so much for sharing your story and telling mine at the same time.
    I look forward to reading more.
    Steve

    Like

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