Please, anything but this!

It's now officially been a 180-degree transformation. Daddy is dead. Don't know what I'm talking about? Go back a year ago and see my very first entry to this Lymey saga. The entry is called One Last Hurrah with Daddy, which is about all the fun I used to have drinking alcohol. But now I can't seem to tolerate any alcohol. Not even a single drop.

Up until recently, I couldn't tolerate much alcohol, but I could at least tolerate a little. A nice tall glass of a well-made IPA on a Friday and/or Saturday night made me more than happy. I would usually watch a movie whilst sipping. It was something I looked forward to. A slight escape from the Lyme hell I was in.

But now, for whatever friggin' reason, I can't tolerate any alcohol, literally not even a few sips (trust me, I methodically tested my limits). At first, I feel like I have bad heartburn, but then the burning travels down into my stomach and it seriously feels like I have fucking lava down there. Sleeping is not pleasant and it usually takes a good 24 hours or so for my stomach to return to a state of relative normalcy.

What happened?!

Well, the trouble all started on July 5th. As I described in my previous blog, I woke up with a tremendous stomach ache and my gut was messed up for at least a few days. I'm not really sure why this happened but I think it was Apple Cider Vinegar that triggered the downward spiral. As I described in my blog, I ate some chicken that was marinated in Italian dressing with ACV as its second ingredient.

Eventually, my stomach pain went away but it seems to come back when I eat spicy food--usually from Chipotle, my favorite place to eat--and, yes, also when I drink a beer or any kind of alcohol for that matter.

Seriously, Chipotle and alcohol were the last two things keeping me happy but now they're the only two things my stomach won't tolerate whatsoever! What is this all about? Is God trying to test the limits of my sanity by literally taking everything away from me that gives me joy? One or two nice cold beers (a week!) was all that was keeping me sane through this whole Lyme saga but now it's unavailable to me! Agh!

I've searched my mind for alternative ways to escape reality. I thought maybe I should try smoking weed but I'm pretty sure that would be disastrous. I rarely had a good experience with the devil's lettuce in the past and my Lyme-damaged body would surely find a way to have an adverse reaction to it.

So, for now, I'm forced to suck it all up and deal with reality without any numbing agents. This hasn't been easy so far. I've noticed that my mood has been all over the place lately. I've been very agitated and depressed and back to agitated again. My body and mind know that there's no escaping the hell, that I can't even look forward to a relaxing beer on a Friday or Saturday evening. And knowing this makes me extremely unhappy.

Thinking back on everything, I still can't help but wonder why I have this sudden onset in alcohol intolerance. I mean, is a little Apple Cider Vinegar really to blame? Did that trigger some sort of toxic die-off reaction that made my stomach more sensitive? Or is something else going on?

I have some theories about this.

Theory A: I have pancreas problems, mainly pancreatitis, which is inflammation of the pancreas. I don't like this theory because I don't know why I would have pancreatitis, unless Lyme or the stress of Lyme somehow triggered it. I've hardly drank any alcohol in a year. Plus, the symptoms don't quite match up. I don't really have "pain"; I would call it more like discomfort when I eat the aforementioned beer or spicy foods. With pancreatitis, you have pain in your upper left abdomen that shoots to your back or chest, I guess. I don't have that, nor do I have any vomiting or fever, which are two other symptoms.

Theory B: I have gastritis. Gastritis is inflammation, irritation or erosion of the stomach lining. This can be triggered by excessive alcohol consumption, drugs (such as aspirin and anti-inflammatories) stress and infections, both viral and bacterial and, yes, parasitic! Symptoms include a burning, knawing feeling in the stomach. Indigestion. Abdominal pain. This sounds a lot like what I have, but why would I suddenly have this? Again, I hardly drank any alcohol in more than a year. I took no anti-inflammatories. Maybe stress could have done it. Or maybe the parasites (i.e. candida or Babesia etc.) got aggravated by the ACV and caused an infection.

Theory C: I have an MCAS issue, and I'm not talking about the standardized tests you take in high school. MCAS stands for Mast Cell Activation Syndrome, which is a disorder that can commonly happen after having Lyme. According to an article I found, MCAS can be described as the following:

"An immunological condition in which mast cells inappropriately and excessively release chemical mediators....In other words, Mast cells are cells that generate an allergic reaction. Allergens binding to these cells cause the release of histamine, which causes immediate, and sometimes very intense, hypersensitivity reactions." (Source)

Lamens terms: MCAS is when your body has an inappropriate or excessive response to allergens or stress. It's an auto-immune-like condition where the body essentially starts attacking itself. Chronic inflammation in various parts of the body is the end result.

Of course, MCAS symptoms overlap with Lyme symptoms so it's hard to tell whether my problem is MCAS or post-Lyme-related complications. Testing for MCAS can be done, but for me, it's a little too early to seek tests. It's ragweed season after all, so maybe the ragweed is making me more allergy-sensitive than usual, which leads me to...

Theory D: I'm just more allergy sensitive than normal. But why? Because of MCAS? Or for other reasons. It's hard to tell right now.

Again, the complexity of Lyme never ceases to amaze me. I mean, when will this Lyme rabbit hole end? I've been falling and falling and falling...but the hole must end at some point, right? Or is Lyme infinitely complex, an endless web that intertwines upon itself forever and ever? Hopefully, there is an end to all this. Though epic in nature, this seemingly never-ending war can hopefully still be won. I want to emerge from the rabbit hole and leave Lyme and all its side effects behind me for good.

Also, I want to drink again. Just a little. Because, honestly, life without alcohol (just a little) is extremely dull and boring. I know that's the talk of an alcoholic and, if I'm an alcoholic, so be it, but, c'mon, God, just please let me have a couple beers a week. Please! Also, end starvation and bring world peace. Thank you.

Lymiversary

Well, it's officially been one year now since I began experiencing symptoms of what-would-eventually turn out to be Lyme disease. July 5, 2017, right after Independence day, which is a bit ironic since getting Lyme was all about losing my Independence, at least for a little while.

So how am I doing?

Well, today being my Lymiversary and all, I was hoping to spend much of the day in relative comfort and appreciate the fact that I was much better than how I was a year ago.

This didn't quite happen.

I woke up this morning July, 5th, with the worst stomach ache I think I have ever had in my life. There was burning and sharp pains. At times, it felt like I was getting stabbed right through the gut with a zillion razorblades.

At first, I thought I may have had food poisoning, but I didn't have a fever and I wasn't vomiting either.

Then, I thought I had appendicitis, but appendix pain is supposed to be more on the side. Mine was right in the center.

It wasn't until a little later that I realized the pain could have been a herx (i.e. die-off) reaction, or at least some kind of adverse reaction, to apple cider vinegar. See, over the holiday, I unknowingly ate chicken that had been marinated in an Italian dressing that had apple cider vinegar as its second ingredient. Apple cider vinegar kills off yeast, parasites and God-knows-what-else so it's very possible the pain was from the release of endotoxins during die-off.

The stomach pain was so intense that I was laid up on the couch all day and this triggered very vivid flashbacks from one year ago. Even the sight of the tray table I had in front of me with half-sipped drinks, straws in each glass, seemed all-too-familiar. The cream of rice I ate...the daytime TV channels I watched...the overall malaise that I felt and inability to go outside of the house--it was like I was experiencing a downward spiral all over again, exactly one year later. I kept saying to myself, "This seriously can't be happening, exactly one year later. What are the odds?"

As I write this, my stomach is a little better so I'm hoping everything settles down eventually and that this is all simply a herx issue and nothing else major. But, man, talk about a sick little trick to be played on somebody who's experiencing their one-year Lymiversary. What can you do, though, but roll with it and don't start panicking!

Stomach issues aside, how am I doing one year after getting Lyme disease?

Not too bad, I suppose. In fact, I recently saw my (Lyme-literate) doctor, just about a week ago, and he gave me a stellar report. According to the orthomolecular machine he uses, my body now requires about 70 percent less vitamins and herbs than it did at the end of January. Even better, many of the vitamins and herbs I took specifically for liver function are no longer needed. One of these herbs is milk thistle, which means my liver is officially "cleaned out".

This is all good news. But I'm still far from being back to normal.

The biggest issue is still physical stamina. For the past month or so, I've been going up to the local high school's track to do workouts, though when I say "workout", I mean walk around the track, no more than twice. In fact, I've found that I literally can't walk more than twice around the track, which is a quarter of a mile in length so this means I can't walk more than a half a mile at a time. Even walking around the track a full two times is too much for me so I usually do about one and a half laps. There is a football field in the middle so I do one lap, then a half a lap, cut across the field and then I'm done, that's all she wrote.

I've even tried jogging at the track but it was brief and I mean very brief, probably for no longer than five seconds. Judging by how I felt after, I realized jogging any longer than five seconds or just jogging in general would be a total disaster. It made me feel vertigo and I had trouble walking in a balanced manner. Three hours later, I also felt gross, like really gross. Terror set in. I thought I may pass out but the feeling eventually passed, thankfully.

So running definitely isn't in the cards right now, which I'm ok with. Walking for a third of a mile or so without dying afterwards is pretty good considering where I was just about a year ago. Really, I'm one of the lucky ones and I need to be grateful, even though I still mourn the loss of my former self.

Along with the improvements in walking, another milestone has been my ability to drive longer distances. Just a few days ago, I drove on the highway for the first time in more than a year. This is a big deal because I've felt so cooped up for so long. I've been in a weird bubble of a twilight zone, so isolated and so alienated. Driving on the highway made me feel free again.

Since I'm able to walk and drive further, I've been generally more out and about in the world. Just the other night, I went out to see the local fireworks display and let me tell you: I was very apprehensive about doing this, mainly because I knew a significant deal of walking would be involved. The usual tradition is for me to meet up with my friends at one of their houses, which is, I believe, maybe a half a mile or so from where the fireworks go off, drink a few beers, then walk to the fireworks. I knew that, this year, however, I would not be able to do this walk. I'd probably be able to make it to the fireworks ok, but then I'd be dead to the world and I'd be unable to get back.

So I hung out at my friend's house as usual but then I had to drive as close to the fireworks as I could possibly get. I didn't think I'd be able to park very close, but I still thought I'd be clos(er) than my friend's house. As it turned out, the closest I could park was the nearby train station. I still wasn't sure if this was close enough for me, but I decided to take the risk and go for the walk anyway. Would I regret it? I hoped not.

Let me tell you: that walk was a very lonely one, because I was alone and I passed couples and friends and families and, well, I felt so alone. It would have been easy to feel sorry for myself but it was also kind of beautiful, and I don't know why. Maybe because it was a perspective from which I had never experienced the traditional fireworks night before. In fact, this has been a recurring theme throughout this past year: seeing life from a different perspective; seeing reality from a different perspective.

See, before Lyme, I was set in my ways, habitual with my routines and went through life in a kind of cruise control. It's amazing to experience how much more there is to reality, but you can only start experiencing it when something life-changing like Lyme slaps you out of your routines. Experiencing the fireworks from a different perspective was just one example of this*, but there have been several of these moments where I find myself in the same situations or the same physical space that I've always been in but I'm experiencing the present reality from a completely different perspective, or, to put it another way, it's like I'm in the same reality but tuning into a different frequency within that reality. What you end up realizing is that life can become so much more interesting and you don't even need to go anywhere different; all you need to do is tune into different frequencies. 

So, yes, my walk alone made me experience the traditional fireworks night from a different perspective and this was why the walk was quite beautiful. However, what also made the walk rather beautiful was that the solitude made me enter a kind of meditative state and it enabled me to take some time to reflect back upon the year and realize how much I had been through and how much I had overcome and there I was, struggling to get to the fireworks display to celebrate my new Independence. Every other year, I had been buzzed (ok, usually drunk), surrounded by friends, numbed to my surroundings but this year I entered that meditative state and truly got to appreciate what freedom actually is because now freedom means more to me than it ever did before I was sick.

I still have a ways to go, that much is for sure. But I should really be grateful for the freedom I do have right now. A broken life is better than no life at all. In fact, sometimes the broken life is preferable to the perfect life because it's from the brokenness that we grow and become a stronger soul. I actually recently wrote a poem about this very topic, so I shall close with this poem:


SQUEEZE OUT EVERY LAST DROP

The way I see it

You can have an imperfect life

A broken life

One that is a fucking nightmare at times

Or you can have nothing

I choose the broken life

That's better than choosing the nothing

And even if there's an afterlife

And I believe there is one

There's still only one Matt Burns

Ever

So I figure

It's best to squeeze out every last drop of him

And see what comes of it

*I was recently at a park that I formerly used to run in but, this time, I was forced to walk a minimal distance and then sit down on a bench. Sitting on the bench, I looked across the park and saw the tree line that was moving and swaying a bit from the wind. The wind carried fragments of sound to my ears, like a little girl giggling in the distance, as well as the echoed sound of a basketball bouncing in a nearby court. I don't think I had ever been so tuned into my present reality than I was at that very moment. Lyme forced me to slow down, sit my ass on a bench and tune in.

Lyme Brain

Six Weeks Later (November 2017):

I finished the Doxycycline towards the end of September, started a regimen of vitamins (as "prescribed" by my doctor) and started improving for a period of a few weeks. Feeling better, I started doing some video work in Boston, which apparently put too much stress on my body and my health started going downhill again. 

This downward spiral started on one particular night where I suddenly felt as though I was losing my mind. It's very difficult to explain the sensation but it felt like something was literally trying to suck my brain out of my head. I also had this weird feeling of dreaming while in an awake state. Every action in my waking life vaguely reminded me of a dream that I felt like I'd just had but I didn't really just have because I had been awake for more than 12 hours. To put it another way, I would say that I had a constant feeling of deja vu and the natural response to a deja vu is for your mind to retrieve the "memory" that you're vaguely remembering. My problem was that I could never retrieve this memory, mainly because it never existed in the first place.

Along with the deja vu's, my short term memory seemed impaired and I had the worst case of brain fog I think I had ever experienced. I could hardly concentrate on anything. Simple tasks like reading a news article, watching TV or even cooking fried eggs became very difficult for me. Again, it literally felt like I was losing my mind or at least becoming mentally handicapped. I think it was a taste of what dementia felt like. And I did not like this taste. It was terrifying.

I survived through that night and, although the deja vu sensation grew less intense, it still lingered throughout the next couple of weeks along with the short term memory problems and especially the brain fog. I managed to do some research on the Internet and stumbled upon a phenomenon known as "Lyme brain", which is essentially stage 2 of Lyme disease, the stage immediately following the fever/flu-like/joint pain stage. Stage 2 is a neurological stage. Your brain and nervous system are affected. Every symptom I was experiencing sounded like this Lyme: Stage 2. What did this mean, then? Did I still have Lyme? 

Or was the Levaquin still a factor? Upon doing more research, I learned that every symptom I experienced also resembled symptoms relating to fluoroquinolone toxicity. 

But, no maybe it wasn't the Levaquin, either! Upon doing even more research, I realized my symptoms also could have been Candida die-off. What's Candida? It's a fungal problem that results from taking too many antibiotics that kill off your body's good bacteria. Brain fog and mental confusion were two big Candida symptoms. I, of course, took a shit-load of antibiotics -- Levaquin, Doxycycline, even the steroids I took are known to exacerbate fungal problems. Maybe I had Candida!

Aside from all the mental symptoms, my physical body started feeling more and more 'off' again, mainly fatigued and toxic-feeling, kind of like there was poison in my blood. Again, these feelings could have been attributed to Candida die-off...OR fluoroquinolone toxicity...OR Stage 2 of Lyme. It was impossible to pinpoint the root-cause of my problems.

My physical unraveling of health lasted about two weeks and, finally, on a Friday afternoon, I got to the point where I could barely even walk, and I'm not talking exercise-walk; I mean I couldn't walk, period. I was so off balance, uncoordinated, dizzy and my muscles felt so weak. I also had the worst case of anxiety I'd ever felt, kind of like there was something pushing an anxiety button inside of me. No matter what I did, I could not calm down. I had no control over it. All this anxiety completely killed my appetite. I could hardly get any food down.

Since walking was such a chore, I basically stayed put on the couch all day and I was so depressed because it seemed like any progress I'd made had, for whatever reason, been reversed. Not only was I back to square one but I was worse than I had ever been throughout the whole 3-4 month Lyme experience. 

At this point, I was literally coming to terms with the fact that there was an extremely good possibility that I was going to die. In fact, I was literally getting myself death-ready, tying up little loose ends in my life as best I could. It was the most -- pardon my Spanish -- fucked-up feeling in the world, thinking that you're living out the last few days of your life. What saddens me is that many people out there must experience this feeling all the time, whether they've been diagnosed with cancer or some other disease, or maybe they're being held hostage or they're a prisoner of war etc. You can't fully understand how fucked-up a feeling it is until you experience it first-hand. Staring right into the eyes of death, seeing the Reaper drooling over your soul, eagerly anticipating the act of taking you out of this earthly dimension...okay, maybe I'm being a little dramatic but, yeah, it's so messed up.

Anyway, I was just about ready to let it happen, to let death take me away. But I wanted to have one last conversation with God. And this is what I said to Him:

I said, "God, if this is the end, then I accept it. I just want you to know that I really want to live. I realize I've been a schmuck and I've taken both my health and my life in general for granted. I've never been happy in the present moment. I've always been dwelling on the past, or thinking about the future, but I've never been in the present moment. There were countless moments where I would be walking outside or running in the woods with an energized, healthy body, and I've never knelt down to the dirt, felt that dirt in my hands and said, 'This right here, this dirt I'm feeling and this air I'm breathing...this is good enough. This is good enough right now.' I never did that and I'm so stupid for never doing that. Health, life, the present moment...it was all overlooked, all taken for granted. Please, God, please give me a second chapter to appreciate the present moment. I may not deserve it and I understand if that's the case, but I figured it wouldn't hurt to ask."

I sat still for a moment and let the prayer sink into the cosmos. I started thinking that, if I DID, indeed, end up living (which I genuinely thought was unlikely), this was maybe all a blessing in disguise. Maybe I couldn't appreciate the present moment until I saw what it was like to have that present moment taken away from me. I felt ashamed that I needed to have my present "destroyed" in order for me to appreciate it. But maybe that was the only way. It's our human nature to take things for granted. We don't know what's right under our nose until it's removed from us.

Honestly, I didn't think my prayer to God was going to make a difference, not because I thought God would ignore me, but because I thought my fate was already sealed. Maybe I wasn't thinking very clearly and, trust me, I WASN'T, but I thought it was more than likely "my time" and I unfortunately wouldn't have a second chance to live more in the present and appreciate the oxygen under my nose and the dirt that's beneath my feet.

But, miraculously, I started to improve. The anxiety lessened and I actually felt hungry, specifically for spaghetti, but at least I was hungry for something.

With spaghetti in my belly, I felt even better. Was this all a trick? More torture? Get my hopes up and then crush them all over again? No, I really seemed to be improving. Maybe I wasn't going to 'snuff it' after all.

Part of my improvement was triggered by a shift in my attitude. And this shift in attitude came from an unlikely place. While I was feeling oh-so-sick, I watched an episode of Stranger Things (season 2), which had just been released on Netflix for Halloween weekend, everybody was buzzing about the show, it was all the rage etc. I think it was in episode two or three (again, season 2) where Sean Astin's character, Bob Newby, describes a recurring nightmare he had as a child. A creepy man named Mr. Baldo haunted him in his dreams and Bob was always afraid of this man, ran away from him etc. But then he eventually realized that this Mr. Baldo in his nightmares fed off of his fear. So, in the next nightmare, he decided to stand his ground and tell Mr. Baldo that he's not afraid. Mr. Baldo backed down, boom, just like that. Bob never had another nightmare with Baldo again.

While watching this scene, I heard a voice in my head say that the Lyme disease fed off my fear and I needed to stand my ground, tell that shit to fuck off, and then I would start feeling better.

Well, that's exactly what I did. I said (somewhat aloud), "Fuck off, Lyme disease! I'm not letting you kill me! I'm in control here, ya limey bastard, and I'm going to live!"

The Mind Flayer from Stranger Things,

my metaphor for negative Lyme energy.

It sounds melodramatic but I felt much better when I said that aloud to myself. If you really think about it, Lyme disease (like any disease) is just a bundle of negative energy, like...like the Mind Flayer entity in Stranger Things (wow, the parallels keep presenting themselves). This negative energy wants to destroy you, that is its mission, and the best way to battle this negative energy is with positive energy. If you show fear, that fear only feeds the negative Mind Flayer that is Lyme and only makes it more powerful.

Now, I know what you're saying: oh boy, here's another dude saying "positive thoughts" can make everything swell. That's not completely what I'm saying. I still think you need the right medicine and vitamins etc. But all I'm saying is that positive energy can help change the momentum of a disease and, with the help of more practical things like the right doctors/medicine/vitamins etc., it can get a pesky disease like Lyme to fuck off, go back to its negative dimension in the "upside down" and, yes, I'm still using Stranger Things analogies here if you're not familiar.

Anyway, long story short, I've been doing better. I'm still nowhere close to being 100% better but I'm at least going uphill once again as opposed to downhill. My shift in attitude helped but I also revisited my doctor, altered my vitamin regimen and specifically focused on supplements that would help boost my liver function (more molybdenum but also alpha-lipoic acid and Tocotrieonols). Again, positive thoughts are helpful, but you still need to be practical as well; you know, you can't just sit in a room and think positive. You need to take practical steps to make yourself better but the positive thought helps steer you in the proper direction so you can better see those steps that need to be taken. Am I making sense here? I think I probably am.

As far as what my core problem is, the medical consensus (according to both my conventional doctor and alternative doctor) is that I do not have Candida and I do not have Lyme and, though the Levaquin still might be a problem, it's more likely that I'm simply being affected by -- not the Lyme itself -- but the damage Lyme left behind, hence the neurological, Lyme: Stage 2 symptoms.

But maybe the "damage" isn't the only factor at play. Like I said before, maybe the Lyme is not just a physical pathogen but a negative energy and that energy can destroy your body and mind just as severely as the pathogen itself. What I'm getting at here is that this is a spiritual battle between good and evil, positive energy and negative energy. I'm sure you think I'm nuts and I am probably being a tad dramatic here but I do feel there is some truth to what I say. The Lyme disease is the shadow monster in Stranger Things lurking in the "upside down" dimension using the Lyme as a gateway to invade my body, take it over and destroy it. That's what it feels like anyway, and, to some extent, I think I'm onto something here.

Either way, it's good to stay positive, folks. And don't take your health for granted! Don't take life for granted! Don't take the present moment for granted! When you're outside in nature, take a moment to smell the oxygen beneath your nose and also take a moment to crouch down and feel the dirt with your hands. Appreciate what's right beneath you.

Of course, showing appreciation for the present moment is easier said than done, no doubt about that. In fact, it's only been a week or so since I've been feeling better and already I've caught myself thinking too much about the past and/or the future. It's hard to stay present but I think it will be a little easier now since I've seen what it's like to have that present be on the brink of obliteration. Lacking the present (i.e. being dead) scares the crap out of me. I'm all set with death. For now, at least. Screw death, man. F that noise.