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

My Backstory with Lyme – Part 1

It’s hard to know for sure, but I believe my Lyme Disease “issues” began back in 2001. I was 26 years old. I’d been married for five years, and we had a beautiful two year old daughter named Autumn. I was also an extremely energetic Youth Pastor of a growing Youth Ministry. I had no type of serious physical or emotional or mental “issues.” For the most part, I was pretty normal (my wife may disagree with that statement).

Suddenly, out of nowhere, I began suffering from panic attacks which led to generalized anxiety which then led to social anxiety. There would be sudden heart palpitations, muscle twitching, debilitating fatigue to where I couldn’t think straight, insomnia, bouts with depression to where I’d have to force myself to get out of bed … and there were even times when I’d just break down crying for no reason. On top of all of that, I also began having horrible chronic headaches. I mean HORRIBLE chronic headaches! The type where you pray for Jesus to return. Where was all of this coming from? I had never dealt with anything like this in my entire life. Why now? And why all of a sudden?

As it persisted, I literally thought I was having a nervous breakdown, and feared that I would soon be forced to live in a padded room at a psychiatric hospital away from my family. I’m not being overdramatic when I say that. That fear seriously haunted me, because no matter how hard I tried or how much I prayed … I just couldn’t “get it together.” I soon fell into a dreadful condition known as the fear of fear cycle (also known as Phobophobia).

For the first time in my life, all of my inner peace and joy were completely AWOL! All of it! It felt like God had completely abandoned me, but I knew that the Bible said He would never do that to one of His own. In Hebrews 13:5 God says, “I’ll never leave you nor forsake you.” That truth no longer felt true in my life. Day after depressing day
my prayers were nothing more than … “God, where are You? Why have You abandoned me?” As I read through the Psalms, I related to how King David often felt …

Psalm 10:1 “Why, O Lord, do You stand far away? Why do You hide yourself in times of trouble?

Psalm 13:1-2 “How long, O Lord? Will You forget me forever? How long will You hide Your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me?”

As I continued to spiral down, my wife became very scared. She’d never seen me like this. Heck, I’d never seen me like this. This was NOT who she married. I’d do my best to put my happy face on around her and others, but behind it was a terrified man who was constantly questioning, “What the heck is going on? This is Not me! Has someone secretly drugged me or something?”

After multiple visits to my Primary Care Physician (PCP) and after multiple medical tests (blood work, CAT Scan, MRI, etc.), my PCP finally told me that the root of all my “issues” was stress/anxiety. On my medical paperwork, he used terms like Generalized Anxiety DisorderPanic Disorder … and Atypical Migraines. I read those terms and felt scared, confused, and angry. I remember thinking, “What the $#@%? … Are you serious? … That’s my diagnosis? What in the $#@% is happening to me?”

It didn’t make sense to me.

After almost a year of battling all of my various “issues,” I became utterly desperate for some sort of relief, and finally agreed to take the antidepressant/anti-anxiety medicine that my PCP recommended (Effexor ER). I remember that conversation like it was yesterday …

I asked him if it was addictive.

He said … “No.”

I asked if I could easily come off of it.

He said … “Yes.”

That young and highly educated Med School graduate was dead wrong on both of those answers. Back in the late 90’s, Effexor ER was a relatively new “wonder drug” … but at that time, medical professionals didn’t know everything about it that they know now. I totally regret ever agreeing to take this specific drug. It has been one of the absolute WORST drugs to try and come off of. If you cold turkey it, prepare to walk through HELL! It’s HORRIBLE! If you wean-off too quickly (like I tried to several times), that’s a little better, but you will still hate your life!

I do need to say that Effexor ER did help lessen some of my symptoms … BUT I never relied on just a pill to help me manage anxiety, panic, depression, and headaches. I also had multiple sessions with a counselor … I also read (and reread) dozens of books and articles on stress, anxiety, depression, and headaches … I also listened to hundreds of podcast episodes on how to better manage my anxiety, panic, and depression … and I also often saw a chiropractor. All of those things did far more good for me than just popping a pill.

With anxiety, panic, and depression, I’m light years from where I was, and it’s definitely NOT because of Effexor ER. Over the years, I’ve learned to better manage my major “issues” using a holistic healing approach that involves talk-therapy, journaling, prayer, meditation, relaxation, good sleep habits, healthy diet, exercise, vitamins, herbal supplements, and essential oils. Don’t get me wrong, antidepressant and anti-anxiety meds definitely have their place in certain situations, but in my opinion they are too quickly prescribed by medical professionals to only lessen symptoms rather than deal with the underlying causes through a healthy holistic approach. I don’t judge or look down on any person who is using antidepressants or anti-anxiety meds. Under my doctor’s supervision, I’m still slowly weaning-off one of them.

Anyway, with all of that, here’s the million dollar question that I often find myself asking … Was the sudden onset of all those various symptoms back in 2001 the result of Lyme Disease and co-infections or did I suddenly acquire Generalized Anxiety Disorder, Panic Disorder, Depression, and Atypical Migraines?

No doubt, at that time in my life, I was not living healthy … my diet was horrible … I didn’t exercise like I should … my sleep schedule was all over the place … I consumed insane amounts of caffeine and sugar to try and keep pace … and here’s a big one … my spiritual life was out of alignment. I had some personal sin-struggles that I wasn’t properly dealing with. So yes, it’s possible that I definitely caused some symptoms of stress, anxiety, and depression to come on … but deep down, it felt like something more was going on … like something wasn’t right inside of my body!

Looking back on my childhood and teen years, I was constantly in the woods … hiking, biking, climbing trees, building forts, camping, hunting, fishing, etc. That was me all the time. I’ve had more tick bites throughout my life than I can count!

Did I ever have a bulls-eye rash?

Not that I recall, but at times I definitely had a rash where I removed the embedded tick from my body. I never went to a doctor, so I never received any type of antibiotics for any of my tick bites. Like many of you reading this, after each tick bite, I just went on with living life.

In 2003, my “issues” began improving. I was starting to feel like my normal self and enjoying life again. Periodically, I’d have some flare-ups with anxiety, depression, and my horrible headaches … but they didn’t knock me back into the pit. Then, in 2012, some very odd symptoms/issues began messing with me, and they became more intense and more frequent. At that time, I recorded these words in my journal … “Something is definitely wrong with me and I need help!”

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.

If you’re battling Lyme Disease, I hope I can be some sort of encouragement. You’re not alone in this battle … so don’t lose hope and never give up! I know it’s hard. Believe me … I KNOW!

Here’s one of my favorite quotes that motivates me to persevere through the really tough times …

Victory is won not in miles but in inches. Win a little now, hold your ground, and later, win a little more.

Louis L’Amour

Battling with you,

Jason