Beyond the Bite Community: Andrew Hurley’s Story with Lyme

Today’s post is one by a Andrew Hurley, an individual that is part of Beyond the Bite Community.  We both thought that my blog would be the perfect starting place for him to share his article of dealing with chronic Lyme Disease.  Not only does it show the depths of what battling Lyme is like, but it also contains humor and hope, both of which are essential to healing.   So, without further adieu…

Andrew’s Story

There are 3 reasons I want to tell the story about my experience with Lyme Disease: To educate people on this disease and spread awareness of its effects, to provide a beacon of hope for those who are currently suffering with Lyme, and to help people find silver linings during difficult times. My dear, dear friend and mentor Curtis “Fifty Cent” Jackson once said, “Sunny days wouldn’t be special, if it wasn’t for rain/Joy wouldn’t feel so good, if it wasn’t for pain.”  Preach on, Fitty!  So, is this a serious story? Yes, it involves my 2 bouts with near suicidal depression. Hey guys, don’t worry – I’m still here. Is this a happy story?  Yes, it involves a man completely changing his life for the better.

Where To Begin?

Let’s start with my Yelp review of Bishop Guertin High School in Nashua, NH: “Class of 2009.  5 stars! Would recommend to others!  I got to drink and be with friends all the time and had not a care in the world. Life is easy!”  Naturally, I assumed life would just keep getting better and better. But as Stephen King once wrote, “The World eventually sends out a mean ass patrol boy to slow your progress and show you who’s boss.  You reading this have undoubtedly met yours (or will).”

I met the patrol boy during the fall of 2010 in my second year at Northeastern University in Boston.  Seemingly out of nowhere I started developing some extreme symptoms that I had never experienced before.  I started feeling horribly depressed, anxious, dizzy, sore, tired, and just overall not like myself.  I heard everyone telling me college was supposed to be the best years of my life, and I panicked.  These are some of the thoughts that were running through my head around the fall of 2010.  Do I have cancer?  I feel so weak I can hardly get out of bed.  I feel tired all of the time.  I’m really dizzy 24/7.  Do I have some sort of chemical imbalance?  I’m suddenly Captain Anxiety and the only power I gained was the ability to compulsively eat pizza like I’m on a game show and the object of the game we’re playing is to eat the most pizza.  Why can’t I think through what I need to pack in a bag for a weekend trip?  Why do I feel like I’m in a dream (and not the cool kind of dream where you can fly or that girl you always had a crush on confesses her love for you)? Am I ever going to feel well again?

Folsom Prison

Lyme Disease affects the brain, so part of the frustration of trying to figure out what was wrong with me was the psychological and physical symptoms of this disease bleeding into one another.  At one point when we were trying to arrive at an explanation and diagnosis, I remember my mom asking, “Okay we know there is a problem here.  But, Andrew, is this physical or is this emotional?”  Thinking I was losing my mind, but still physically feeling like I got hit by a truck, I yelled through tears “I don’t know!”

Lyme is so hard to diagnose that from the Fall of 2010 through the end of 2013 I spent time with doctors that could not figure out what was wrong with me.  They were treating my symptoms instead of figuring out what the root cause of all of this was.  During this time I thought I had something called Adrenal Fatigue (which it turns out I did, but it was just a symptom of Lyme) and gut-health issues that were affecting my brain (sexy, I know).  I tried every remedy under the sun.  Adrenal supplements, bone broth, lots of kale, sinus surgery, and Native American Witch Doctors.  I didn’t try that last one, but I was desperate enough to consider it.

My symptoms did improve somewhat over this time as some of these treatments worked, but they only acted to mask symptoms – I was not actually getting any healthier.  Life ranged from bearable at best to “I can’t take this anymore” at worst.  I kept my head down, kept attending class at Northeastern, and completed three different full time 6-month internships while at school.  Looking back, I have no idea how I did I graduated on time and kept working, but it had to be strength from God.  We’ll get into God a little later.  But for now, here is the turning point.

Help Me, Obi-Wan Kenobi.  You’re My Only Hope.

I did so much research on the human body and doctors in the area from 2010 – 2013 that I basically became Dr. Gregory House (minus the Vicodin addiction).  At the beginning of 2014, I came across this facility in Central Massachusetts called the Ultrawellness Center.  It sounded like the name of a Scientology center so I was skeptical, but it had a fantastic reputation for diagnosing people properly who had bounced around from doctor to doctor without answers.  I booked an appointment for January 4th, 2014.

I saw Dr. Todd Lapine and within about 20 minutes of me telling him the history of the previous 3+ years, he was pretty sure that I had Lyme Disease.  I told him that I couldn’t possibly have Lyme because I was tested back in 2010 when this whole debacle started.  He replied by telling me that Lyme tests are very unreliable and that I most likely had a false negative. Touché, Lapine.  He told me that while Lyme Disease is difficult to diagnose, it is even more difficult to treat. Translation: the battle has just begun.

I drove home that afternoon in a snowstorm that turned a 3-hour drive into a 5-hour drive.  I was completely overwhelmed because I had just had this bomb dropped on me and I was supposed to start my first full-time job that Monday. I got home and went into my room alone for a few hours.  I just wanted to be alone and feel bad for myself.  A few weeks later, I officially got diagnosed with Lyme.  I still have the voicemail on my phone.  The woman leaving the message seemed so nervous… I remember thinking, “you’re not the one with Lyme, so why do you care so much?”  I had to take the next few months day by day.   I started my new job and would pretty much go to bed immediately after getting home every day.  This was a dark time in my life, but I started writing down everything positive from each day, no matter how small it was.  I started actually being treated for Lyme that March when I found a specialist in Hanover, NH.  I have made an incredible amount of progress since then, and I continue to make my way back to health little by little every month.  I have a long way to go, but there is absolutely light at the end of the tunnel.

This Is Major Tom To Ground Control.

I could sit here and tell you how hard my life has been since 2010.  Sorry, I think I am going to do that for me like 30 seconds.  But then it gets happy.  I promise. Have you ever had a problem that you literally couldn’t ever get away from – not even for a minute?  The amount of frustration I had watching my friends have fun and not being able to explain just how sick I was cannot be put into words.  I went to countless doctors who ran countless tests and responded every time with little more than shoulder shrugs.  It made having a girlfriend or meeting new people seem so far out of reach.  How are you supposed to even talk to people when you don’t feel like yourself and you want to crawl in a hole? For a few periods of time, I stopped wearing a seatbelt and considered driving my car into something.  But I don’t want to dwell on all of that.  I want to tell you about some of the amazing lessons I have learned since 2010 and how my life has changed in some unexpectedly beautiful ways.

Fun (With Problems)

So let’s lighten it up, shall we?  Through my years of trying to figure out what was wrong with me, I have learned so much about food. I basically minored in nutrition and completely changed my diet.  I also learned how to cook (LADIES???).  At the time that this all started going down, I hadn’t eaten so much as a carrot since the Bush Administration and would’ve lived inside a pepperoni Hotpocket if given the chance, so this was a big adjustment.  My sophomore year college roommate and I single handedly kept a Papa John’s in business one fall – I’m pretty sure we bathed in the garlic sauce.  Are you seeing a trend? I had a problem.  When I first changed my diet, I lost 55 pounds in about 3 months.  I thought that I was “big boned” my whole life.  Turns out I was just an extra thick milkshake that needed to lose about a quarter of his body weight.

Also, I loved drinking.  I have been crowned “Best drinking partner” on multiple occasions and I believe I deserve that honor.  But I don’t drink anymore.  Yes, it’s for my health, but I am not sure I want to drink even when I can some day. A casual 3 beers with friends around a campfire?  Sounds ideal!  Personally, I can’t do it.  I was always a 100 proof Rum guy.  More specifically I was a “drink too much 100 proof rum and attempt to yell at members of the New York Yankees through the television” guy (this really happened but it was 4 Loko.  OG 4 Loko.  I ain’t no rookie).   Although I feel like the Jimi Hendrix of drinking (cut down in his prime), alcoholism runs deep in my family and I feel like stopping at the age of 20 allowed me to dodge a potentially huge bullet. It’s been about more than just the physically harmful effects of drinking though.  I’ve taught myself how to be comfortable with silence and not rely on alcohol as a social crutch.  I have learned how to ask questions and listen intently during conversations rather than just stay in idle chitchat.  I also haven’t thrown up in almost five years, so I’ve got that going for me… which is nice. And as for me and pepperoni Hotpockets? We are never, ever, ever getting back together.

We Can Rebuild Him…

I have completely different goals, interests, and aspirations than I did a few years ago. I am a more well-rounded person, and I have a clear vision of what I want my future to look like.  Since I have had my health taken away from me for a (temporary) period of time, I now cherish the thoughts of hiking, running, camping, singing, drawing, and climbing.  Most “ing” words, really, that don’t involve “sitting.”  In these past few years, I have watched enough Netflix for a lifetime and can quote every line to Dumb & Dumber (“Excuse me, Flo?”).  Enough is enough.  I plan on being that annoying healthy old guy who is running marathons with the young guns.

“Patience is a virtue.” I believe it was Andrew Hurley who gave us that nugget of wisdom back in 2014.  I agree with him.  The whole time period has given me much more patience.  Those who know me well might say that the last sentence might not be saying much, but it’s still an improvement.  So now when I can’t get a parking spot at Trader Joe’s, I just swear at the guy taking up two spots for 30 seconds instead of a full minute.  Silently and in the safety of my car, obviously. What am I, a tough guy?  In all seriousness, I am much more patient in many other areas of my life – difficulty at work, moving stresses, unexpected relationship problems.  It’s given me so much perspective on what is worth getting upset about and what is simply out of my control.  But in less seriousness, that guy at TJ’s has to know he’s taking up two spots, right?

Once More Unto The Breach, Dear Friends, Once More.

This time period has allowed me to empathize with those who are struggling.  I am not just talking about Lyme Disease – there are other physical and mental health problems that can be treated if people are pointed in the right direction.  Hopelessness doesn’t have to be the norm for those suffering.  Now that I am getting treated, I feel so much better than I did in 2010.  My depression and anxiety are going away. I am a living example that you can come through the deepest darkest times of your life if you just keep going.  I really thought that I was in an absolutely hopeless situation and that I was never going to get better.  These feelings were the strongest during the winter of 2010-2011 and when I found out I had Lyme in early 2014. I never specifically planned on killing myself, but a few times I thought, “I can’t do this anymore.  If this lasts any longer, I am going to have to die.  That’s that.”

But life got better.  That’s what I would say to anyone who is really having a hard time.  Just keep pushing. Clean up your diet. Exercise.  Seek professional help.  Make sure medication is the last house on the block, but make sure it’s still on the block.  Don’t take it off the table.  And please don’t be embarrassed to talk to someone about your struggles.  Crying is like throwing up for the soul- you will feel so much better.

I’m No Longer A Slave To Fear.

Above all, the most important change in my life has been the development of my relationship with God.  Full disclosure: I’m about to get a pretty Jesus-y here, and I mean that in the best way.  I grew up in a Christian home, but my faith didn’t become real until I was confronted with extremely trying times.  I learned what it was like to give up control over circumstances I was trying to hold on to in vain and see God work things together for good.  God replaced some of my selfishness with a desire to love others more than myself.  I have never felt adequate in sharing the Gospel with others and cannot eloquently put into words the changes I have seen in my life since putting faith in God, but I can say I am nowhere near perfect and never will be.  Neither is anyone else, and that is the whole point – grace for all exists anyway.

Studying Jesus himself has been fascinating – I’m actually reading the Bible instead of being told what it says by “Christians” who don’t act like Jesus whatsoever.  I don’t have all of the answers and struggle with questions all of the time, but I do know that I am more kind, gentle, accepting, loving, generous, and honest than I have ever been.  I take approximately zero credit for that, personally.  God pulled me close to Him during this seemingly impossible time of my life and I quite literally could not have survived without Him and the friends & family in my life.

The Best Of What’s Around

I recently dug through some old notes I wrote down and this is what I had to say in November of 2010: “All I want is to feel normal again so I can move in a positive direction in my life, but this is not happening right now.  I have been pleading with God to heal me, but I am honestly not very optimistic.  I’m trying to be, but it’s just not really in my nature.  All of my other issues, whether it be about girls or friends or school or whatever have kind of fallen by the wayside right now.  This is like the sound of a jet plane, drowning out everything else.  It’s the only thing I think about because I can always feel it.”  I still can feel like that some days. But instead of waddling in despair, I get excited about everything I am going to accomplish in the future and I thank God for all that I have learned. I don’t know when I will be completely better, but I know I will be some day.  I’m lucky enough to see the bright side of this difficult season of my life and feel honored to share it with you.

Now if you’ll excuse me, I’m off to get a “Smooth Seas Never Made a Skilled Sailor” tattoo.

-Hurlz 2.0

P.S.

I’ve added a FAQ portion on the next few pages that dives into diagnosing and treating Lyme if you are so inclined.  If not, that’s cool too.  This is America and I can’t make you do anything you don’t want to do.  As a bonus to reward you for reading the FAQ’s, I have included some pictures from the past 5 years.  I’m realizing now that you can totally just scroll past the FAQ’s and look at the pictures.  Welp… what can I say?  With great power comes great responsibility.

End p.s.

Lyme disease is misunderstood, under diagnosed, and significantly less delicious than it sounds.  Here are some questions that have come my way over the years, and I hope that these can help steer people in the right direction if they suspect that they have Lyme:

1. What are the symptoms of Lyme Disease?

Here is an example of a chart that doctors will use to measure potential symptoms of Lyme.

(Luckily I managed to avoid the “bedwetting” symptom.  Hey, you gotta count your blessings, maaaaaaaan.)

2.  I have some of those symptoms, but not all.  What does this mean for me?

Lyme is called the “Great Imitator”.  This means that it can mimic the symptoms of other diseases and vary wildly in intensity.  Some people with Lyme need a wheelchair to get around while others could have Lyme living in their bodies and never have symptoms.  Patients with Lyme usually have some unexplained medical issues that have gone on for a few years and they have never been able to figure them out.  It is very possible to have one or two of the symptoms in the chart above or almost all of them.  It completely depends on the patient.

3. If basically every symptom under the sun could be Lyme, how do you diagnose it?

That, my friends, is one of the million dollar questions.  Tests for Lyme are incredibly unreliable and mostly inaccurate.  For example, I was tested for Lyme in early 2011, and it came back negative.  I crossed that off my list and pursued other diagnoses.  Little did I know that this test was a false negative.  The best course of action is to find what is called a Lyme Literate Doctor.  These doctors have much more reliable tests than others, but more importantly they will listen to your symptoms and try to put the puzzle together on whether or not you have Lyme.

4. How do I find a Lyme Literate Doctor?

Lyme Literate Doctors who treat for Lyme in certain states can be prosecuted for long-term antibiotic use.  It is absolutely unexplainable why this happens, but it is the reality.  As a result, LLMDs are hard to find and contact.  Please see the below site for information on how to get in touch with a LLMD: http://ilads.org/ilads_media/physician-referral/

5. What protocol for food and medicine are you on?

It is best to eat a nutrient-dense diet that supports your immune system while you are healing.  This means a lot of vegetables, fermented food, fish, and genuinely “real” food.  This means very little sugar and no processed food.  This keeps inflammation down and aides your body in healing.  This inevitably leads to people asking me, “So what do you actually eat every day?”.  I respond by saying “vegetables and meat”.  As far as medicine goes, I am currently on antibiotics.  I take clarithromycin, rifampin, and hydroxychloroquine.  I am in the process of seeing a new doctor and adding some additional support for my body in the form of supplements, probiotics, and the like.

6. Why is there so much conflicting information on Lyme treatment online?

Doctors and researchers are still trying to figure out exactly how Lyme behaves.  As a result, opinions on how to best treat Lyme vary.  It also depends on the person’s body and how they respond to certain treatment.  Some people barely respond at all to antibiotics and claim to be completely healed by the use of essential oils.  Others have had an incredible amount of success with antibiotics.  Basically, whatever method you are using, you will be able to find contradictory information online that you are doing the wrong thing (you stupid idiot).  It is important to get in touch with your body (sorry for how hippy dippy that sounds, but it is kinda valid) and see what treatment is working for you.  It’s vital to stick with a treatment plan long enough to see if it’s working, but to also change strategies if you are not improving.

7. Is there a good resource for symptom and treatment information and to keep up to date with Lyme news?

Yes, http://tbdalliance.org.

Fall 2009. I want to be formal, but I’m here to party.

 Summer 2010 vs Summer 2013.  Still was in the midst of figuring out what was wrong with me, but at least I didn’t look like I had just eaten the entire McDonald’s Dollar Menu and then drank 30 beers.

Florida in February 2014. Crazy how deceptive pictures can be. I look like I’m having fun, but that month was one of the worst of my life. I was transitioning doctors and was in the midst of still learning a new job.  I got to escape the harsh New England winter to go to Florida for a week, so I guess it wasn’t all bad.

Graduation in May of 2014.  Had just started Lyme treatment with antibiotics about 2 months previous to this.  I look a little… shall we say… Mellow Yellow.

Summer 2015.  On the road to recovery.  Let’s get after it.

 

 

John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”