How rude of me to abandon you all for A WHOLE YEAR. I really didn’t mean to guys, please don’t be mad!
(And I’m really sorry for those of you who emailed me and didn’t hear back right away. I have no excuse for that other than the fact that I was pretending to be a completely different person without Lyme, and without mundane responsibilities like email… Denial was fun while it lasted. )
The truth is: My life got absolutely, out of control, ridiculous.
And when things get bad, I tend to shrink away and isolate myself. I wish this wasn’t the case, as it’s definitely a maladaptive behavior for someone with a chronic illness, when things are… ya know… pretty bad on a regular basis.
Cue hermit lifestyle.
For a while, getting through each minute of each day was a challenge. I felt like I had no business chronicling my daily miserable-ness for the whole world to see.
And truthfully, I needed to disconnect from sharing my experience with the Lyme community, as lovely and as supporting as it can be, I needed a break. In the beginning, all I could focus on was on trying to survive while my body was unraveling. And in later months, all of my focus was on being present and intentional during my treatment, and trying to live life when I was blessed with good days and moments.
And somewhere in all of that, a whole YEAR has passed. Holy Moly.
So here’s what happened since I awkwardly dropped off the face of the blogosphere:
So many life changing events have happened since the last time I wrote, it’s hard to know where to begin. I feel like SO MUCH has happened, I almost feel like a different person. Seriously. (I hope you guys still like me.) I’d like to think I’m Lindsey 2.0.
I guess I should explain what prompted the unplanned hiatus.
******WARNING: Potential emotionally triggering material coming up… Also, if you’re my parents, you’re probably about to be mad at me for blogging about this again. Sorry guys, but I gotta keep it real.*******
I never intended to leave you guys hanging with no explanation, it just happened that way.
Last December, Lyme completely incapacitated me. There were several days where symptoms overtook my body and I simply was not able to feed myself, get out of bed, or take a shower despite all attempts. I couldn’t even tolerate watching Netflix in bed.
Sometimes the only thing I could accomplish was laying on the cold tile floor of the bathroom, for hours, staring at the ceiling. (How melodramatic of me.) I spent about 67% of these days trying to figure out how to kill myself without actually having to, you know, do the killing part. (Andddd cue: the moment I realized I should maybe lay off blogging and try to figure out my life instead).
Now – I need to add – I’m super embarrassed to even write about wanting to end my life now. The irony is, I have already proclaimed to the world in a previous blog post that my Lyme symptoms drove me to the point of suicidal thoughts. Except, since I was suicidal and in so much chronic pain then, and hated how Lyme Disease had taken every single aspect of my life and ruined it, I really didn’t care too much who knew it.
Now, writing this many months after the fact, I’m ashamed that I let the desire for pain relief and all of the failed treatments overshadow my hope for the future. And I have since made a VERY serious pinky promise to myself, and to my parents, to never let that happen again.
^ Sorry that was a terrible joke.
I’m not sorry for using another E-card picture though. They’re too applicable. I went to look for one and found 37 that related to this post. Cant stop, won’t stop.
On a serious note… I have too much love to give to leave this earth just yet, and I refuse to give up on my goal of reaching complete health and vitality. That is the deepest desire of my heart and soul. It will happen. I won’t give up.
The reason I’m disclosing this (again) is because I have this thing, where I have to be annoyingly, brutally honest, (just ask my boyfriend) and it wouldn’t feel right not telling you guys about my deepest struggles. So I’m laying it all out, and hoping it doesn’t come back to bite me later. (On second thought, an anonymous blog sounds smart in retrospect.)
And the other reason is: I know there are so many people suffering in the same way.
Its a huge problem in the Lyme community for multiple reasons.
Take your pick:
- Never-ending daily pain not helped by pain relievers
- Incredible depths of suffering that affect every aspect of life
- Inability to function and participate in life
- Lack of available proper treatment
- Lack of results despite YEARS of proper treatment
- Inability to know whether treatment will make you better or more sick, despite monumental amounts of research
- Huge financial burdens that no one is prepared for, easily upwards of $100k out of pocket sometimes
- Lack of understanding and support from society, the medical community, family and friends
- And oh – no big deal… The neurotoxins produced by Lyme bacteria and coinfections that chemically alter your brain and can cause extreme anxiety, depression, panic attacks, personality changes, and suicidal thoughts!
- And we can throw in this for good measure: The never ending amount of lifestyle changes that are needed to heal that are literally impossible to implement while sick and also if you’re not a millionaire (avoid gluten, corn, soy, dairy, legumes, sugar, alcohol, GMO’s, non-organic produce, regular cleaning products, VOC’s, cell phones, wifi, smart meters and all electromagnetic frequencies, moldy environments, chlorinated shower and drinking water, teflon cookware, scented products, chemically laden personal care products, wooded areas… must I go on?)
(Are we having fun yet?)
So if you’re reading this, and you’ve been there or you are there now… I need to tell you guys:
You are NOT crazy!
THIS. IS. NOT. YOU.
Honestly though. Go back and look at the second to last bullet. It’s important.
A couple of months ago, at a doctors visit, I learned that I had a significant amount of Lyme hiding out in the frontal lobe of my brain. Treating that has been brutal, since it gave me new neurological symptoms I never had before and worsened old ones. But I can honestly say that since upping my detox protocol a ton, and treating the Lyme in my brain… I haven’t had a single thought that wanders anywhere near suicidal. In over 5 months.
So if you’ve been diagnosed with Lyme, and prior to that have never been depressed or suicidal. I assure you, it’s not you. It’s the overwhelming amount of neurotoxins. Don’t let yourself think otherwise.
This is the result of a very serious infection in your brain and a sign of your body crying out for help. You’re not alone. I see you. I understand. I know you feel like no one does. But I do… and there’s hope. THERE IS HOPE.
There is a way out of the all consuming darkness.
Please, do NOT give up yet.
You can get well.
Your body wants to heal. I promise you. Your body wants to work with you. The human body is infinitely more intelligent than we understand, and when you remove the obstacles and give it the support it’s craving the most, your body works miracles to repair and heal.
You deserve health and the ability to live life to this fullest.
(Alright, stepping down from my podium and putting the pom-poms away. Sorry for screaming at you in caps lock.)
Anyway, back to December:
I could not handle being in my body another second. My already difficult health situation was sent over the edge when I had a bad reaction to a medication. My doctor and I thought going on Low Dose Naltrexone (LDN) was a great idea to boost my non-existent immune system and reduce my pain levels (like it has been miraculously reported to do in cancer patients and people with MS and other autoimmune diseases.)
Guess what LDN did for me? NOT THAT.
In fact it did the opposite. And my doctor refused to believe it was an issue. Eventually I went against my doctors advice and stopped taking it, and later things calmed down, but it had already pushed me over the edge.
To be fair, we had run a comprehensive genetic profile and my doctor was also playing around with methylation supplements, trying to figure out how to compensate for the horrible hand I was dealt in the genetic lottery. (Thanks Mom and Dad for making my homozygous for like EVERY important detoxification gene. It’s not like I need to get rid of toxins or anything. GEEZ LOUISE. Just kidding, love you guys, thanks for putting up with me.) And its super easy to over and undermethylate, which can cause severe changes in a short amount of time, so that could have played a part in my body unraveling and shutting down.
I realized I needed to take a step back from everything and just focus on trying to live moment to moment. I took a break from active Lyme treatment for a few months. I was still on supportive therapies and supplements from a functional medicine practitioner, but my body could not handle much else. It was rejecting treatments right and left and I needed to reevaluate.
I just needed a break, a time to breathe, regroup, a time to see where my body was at, without all of the side effects and reactions to treatment confusing things. I was dangerously close to giving up, and I needed a change of scenery and a break from reality.
My parents and my boyfriend all decided for me that I needed to move out of my parents house and down to Northern Virginia with my boyfriend. There I pretended I was an HGTV interior design superstar and I channeled everything I had into figuring out how to decorate on a teeny tiny budget, which was fun until I ran out of apartment projects and pseudo energy from adrenaline. But having a kitchen that only contained fresh organic produce and paleo foods was literally a DREAM COME TRUE, as a person who was annoyed every time I opened my parents’ pantry to get coconut oil and saw boxes of cheerios and 3 year old pasta noodles.
My control freak brain is incredibly happy when I open up kitchen cupboards that look like this.
My favorite ingenious small kitchen hack: a fresh produce wall.
We’re obsessed with plants. (Free oxygen and air purification y’all!) We bought too many. Only about 1/4 of our plants are in these pictures.
We also signed up to be fosters for the local animal shelter and completely and utterly failed with our first attempt. “This will be great!” I said. “We definitely can’t handle or afford a dog right now, so this is the next best thing!” I said.
After we spent a weekend with the dog, we were already attached and we went back to adopt him. (You saw this coming.)
Can you blame us?!? Look at that face.
Unfortunately our apartment complex had a breed restriction for Pit Bulls, and we could not complete the adoption. Even MORE unfortunately, the shelter still let us take him again for another 2 weeks while I tried to desperately figure out a loophole by getting him certified as a therapy dog or and emotional support dog.
During this time, we got ourselves in deep trouble by giving him a new name and buying him stupid amounts of things. I was in one of my “I’m pretending I don’t have Lyme” phases and was attempting to go for daily 6 mile hikes with him in the dead of winter. And I did, for a while. Because I’m an over achiever at heart and I had read way too many Cesar Millan articles (“Dogs need exercise, discipline, and affection… in that order.”)
And then the inevitable days came where I was barely able to get out of bed, and shit really hit the fan when a snow storm rolled in. The salt our apartment complex put ALL OVER the sidewalks sliced his paws open every time I tried to take him out. It was heart breaking. I still remember picking up a 50lb dog in my arms, during a morning walk, on a day my back pain was so bad I felt I shouldn’t even be out of bed, and carrying him back to the apartment door because he was limping so bad.
After we bought him a THIRD pair of doggie booties, this time, $70 ones from REI (the pooch had nicer things than me) and they STILL would not stay on his feet, we knew we had a problem.
I balled my eyes out, but I knew he deserved to go to a family with a yard, and to have a mom without Lyme Disease, who could give him consistent exercise.
Returning his cute butt to the shelter was heart wrenching. But he was such a gift while we had him, he forced me outside and he helped me laugh when I couldn’t find joy in anything. He temporarily gave me the will to live when I had all but lost it.
Thank you, Jackson. We miss you.
After taking much time for rest and internal reflection and contemplation, in mid February, I experienced what I can only describe as divine intervention.
It was a definite “God thing.” I’m sure of it. It was my very first answered prayer. Something I had never experienced before. And it’s changed my life in countless ways.
(If your trying not to roll your eyes right now, I get it. I was there. For most of my adult life I was an atheist/agnostic and in my mind, belief in God and intelligence were mutually exclusive. I was a serious religion hater, for sure. Just hear me out… I promise its relevant. And I promise I won’t get preachy. No one likes that.)
But the short story is, after a series of coincidences and impeccable timing that made me reconsider my beliefs, I started a relationship with God last December. During my break from treatment, I had been praying for guidance on what treatment I should pursue next.
A church acquaintance was trying to persuade me to go to a doctor that had healed a woman he knew of Lyme, but from what I heard and read on the internet, I had a literal visceral reaction to this doctor. The thought of it made me want to puke. I wanted nothing to do with him, a simple google search was red flag central.
But being a total newbie at the God thing, I decided to do my due diligence and get in touch with this woman who was cured of Lyme by this doctor. (Just to rule it out, if anything.)
Now at this point, I had been hiding from email and social media for a few months, like a coward, because I just couldn’t deal. Who knew email could be so scary right?! I know, it doesn’t make any sense. But I think I still have mild email PTSD from grad school when I would return from a stint in the emergency room or awaken from 22 hour sleep coma after a major Lyme flare to find a million emails about things I was behind in.
(As a side note, I wish I could go back and tell every single one of my professors, “I HAD LYME! THE WHOLE TIME! I had Lyme and I still did all your stupid assignments each time I was in the hospital, and all those times I fainted in clinicals? It was Lyme!)
Anyway, I opened my email for the first time in weeks to send this lady questions about the doctor she saw. Afterwards, I saw an email newsletter from my biological dentist’s office (the one who did my cavitation surgeries) about upcoming health events in the area and opened it.
And something immediately jumped out at me. Among the kombucha making classes and bioidentical hormone seminars, there was a presentation on chronic illness by Dr. Jernigan. And it was scheduled for the following day, in Maryland.
Wasn’t he that doctor all the way in Kansas? I did a quick google search and I discovered that yes, he was the doctor in Kansas, and he owns the Hansa Center for Optimum Health. Back in 2013 when I was first diagnosed with Lyme, in one of my late night internet research sessions, I stumbled across the Hansa Center in the depths of old Lyme forums. The testimonials were nothing short of miraculous and after reading about the treatment approach, it deeply resonated with me.
But when I learned that the center was all the way in Kansas and that it was a huge chunk a change for two weeks of intensive treatment, I knew my parents would never go for it. I had a hard enough time convincing them I needed to see a doctor out of network. So I eventually abandoned the idea.
And there I sat, looking at an email that said he would be giving a free presentation in MARYLAND. So after I called and secured a spot on the event list, I prayed that God would alert me to anything that was mentioned that could help me.
Since I generally had no idea what I was doing, my prayers were sort of like a child asking God to miraculously write their name in their peanut butter and jelly sandwich… I needed a sign and I made sure to give God an specific example of what I was asking…
“Just so were clear God, if he starts talking about hyperbaric oxygen chambers or ozone therapy or something, and that’s what I’m supposed to do to get well, please God, find a way to TELL ME. Open my mind and make me aware of anything that I’m supposed to do.”
I drove up to Maryland the next day and I didn’t know what to expect, after all, it was a talk on “chronic illness” and could possibly be very generic.
As soon as Dr. Jernigan walked in the room, I felt a shift in myself. His presence is unlike anyone else I’ve been around. I’m not sure if it’s his height (think NBA basketball player status) or his beard, how humble he is, or something else entirely, but he had my full attention.
His powerpoint presentation was not about Lyme Disease, but in almost every example he gave, he talked about his Lyme patients and the miraculous success that he had. And on top of it, he took no credit for it; he regularly said that God did the healing, he just facilitated it.
Every. Single. Thing that came out of his mouth resonated with me. His approach to Lyme Disease was the exact opposite of everything all of my doctors had told me, and yet it was what I felt was true deep in my soul.
My heart swelled with joy and I experienced a feeling I had never felt before. Every cell in my body had heightened awareness but I also felt like I was light, floating. I had to look down at my body to make sure I was still connected to it.
His words were nourishment to my starving soul. My hope for total health and true recovery was a small flame, barely perceptible, that had been slowly dying inside of me each time a treatment failed, and yet in the span of an hour, Dr. Jernigan lit that flame ablaze.
I felt like someone was tapping me on the shoulder whispering “Pay attention, don’t miss this!”
In the Q&A session after, it was clear that other people attending the session were here for various reasons; they asked questions about Type 1 diabetes and autism and autoimmune disorders. After a few of those questions, Dr. Jernigan talked about his view on those things, and added at the end; “Yeah I guess I wound up talking about Lyme a lot tonight huh? That’s not the only thing we treat but a lot of our patients come to us with Lyme, and after years of no treatment success, they have a dramatic reduction in symptoms in just two weeks.”
And I felt like he looked right at me.
I didn’t know if we could afford it, or if my parent’s would be on board with me going across the country for treatment but I knew I needed to go the Hansa Center.
And then when people started to ask if there was anybody in the Maryland area that was doing what Dr. Jernigan was doing, (and I’ll give you my answer: No, no one is.) Dr. Jernigan said that he was looking to open up a second Hansa Center on the East Coast, right in Maryland!!
He was probed more about the second clinic, and on the down low, after more and more people filtered out of the room, he admitted that the reason he was in the area was because he met with his investor that day and they were looking at rental spaces. They were apparently not far from being able to open it.
(*****Disclaimer: I do not want to mislead anyone because I now know that specific deal fell through, but that they are still entertaining the possibility of a second clinic.*****)
After hanging on his every word, I went to the back table to buy his book so I could learn more. The lady selling the books asked me where I came from, and after mentioning my parent’s town, she said she lived in the next town over, where my boyfriend grew up! She proceeded to tell me that her daughter had Lyme and was in a wheelchair in high school, and after going to the Hansa Center she’s in college now and playing basketball again!
I was floored.
I left the event with a profound feeling that I had just received a sign. The synchronicity of the night was hard to ignore.
And at the same time I was utterly confused, do I go to Kansas now? Or wait until the second clinic opens? For weeks on end I tortured myself, wanting to be sure. And although I mentioned it to my parents, I was terrified to be shot down, so for over a month, I delayed seriously asking whether or not we could do it.
Everything was riding on this.
In late April, I finally did. It required a huge leap of faith, but thankfully, after much deliberation, my parents were on board.
We called, and secured a spot for July for two weeks of treatment. After so much build up, I didn’t know what to think. And to be quite honest… I was not sure how I was going to be able to make it until July. I had been teeter tottering on the edge of my limit for months at this point.
After scheduling, they asked for my medical history and to fill out all of their new patient paperwork and symptom checklists… and something miraculous happened.
They told me Dr. Jernigan read through it himself, and decided to move me up on the waiting list.
They offered me a spot TWO WEEKS away.
I just about fell over.
And after frantic hotel and airline booking, my wonderful dad and I were heading to Wichita, Kansas for two weeks of intensive treatment.
Now, I have to stop here, because that’s a whole story in and of itself that I can’t get into in this post, but I promise I will write about it.
(You’re probably thinking “Sure, more empty promises from the infrequent blogger who doesn’t follow through!” I know… But I promise. People need to know about the Hansa Center and I’m determined to share my experience.)
But I will tell you this:
The Hansa Center changed my life.
It was one of the most magnificent experiences of my entire existence. It was so incredible that I genuinely wish I could shrink the Hansa Center Clinic and all the doctors and staff in it, down into a little Polly Pocket – so I could carry the Hansa Center around with me everywhere.
It was legitimately a little slice of heaven on earth. It restored hope to my deeply broken soul. It gave me an incredible gift, it gave me my future back.
The life I had been working hard at, planning, achieving, preparing for was ripped away by Lyme disease. The Hansa Center showed me that I could still have that future.
Am I completely healed?
The thing is, I’m better. And sometimes I’m not. It honestly depends on the day. The difference is, I KNOW I will be healed. I know it deep in my heart and I really do believe it. Last year at this time I was doubtful. I knew I was not supposed to live like this and endure pain forever, but all of my experiences told me I might not ever get out. It might be my reality for ever.
But the fact that I have days, or stretches of a few hours, where I’m relatively symptom free is PROOF that my body has the capacity to heal. And I will get there. I just have to keep forging ahead.
Love and healing vibes,