Living in the Lymelight

It’s been about a month now since I started “feeling better”, though when I say “feeling better” I mean I feel more stable and, overall, more comfortable. I still have a day here or there where I feel like I’m going downhill again and, come to mention it, today, as I write this, is one of those days. I went out to a bar last night, only five minutes away from my house, had a total of two beers, chatted for about two hours and then returned home. That was enough to make me feel quite unwell today. In fact, I was worried that I had derailed all my progress. But, come on, you have to live A LITTLE, right?! Two beers and two hours at a bar was something I felt I needed to keep me sane. I’ve hardly been able to leave the house for very long lately, not to mention do much socializing. I needed a little fun...

Okay, I better just admit the beer I drank was on the stronger side. All right, it was twice as strong as normal beer. Technically, it was a Natty Daddy, the father of Natty Ice and also much more potent. So I guess I got what I deserved. No, I don't guess; I know I got what I deserved. I'm kind of an idiot.

Drinking strong beer is definitely not a good idea, that much is clear. But strong beer is really the least of my problems and it's also something that can be easily avoided. My bigger (and more unavoidable) problem right now is physical activity. I still can’t walk much more than about ten minutes with my dog outside. If I go longer, about three hours later I will feel sickly, kind of like poison has been squirted into my bloodstream. I’ve come to the conclusion that there may be an excess of toxins in my muscle tissues and lymph nodes. Lymph detoxification only kicks into action when we exercise or at least do some form of physical activity. My problem seems to be that these toxins get into my blood during physical activity and aren’t being eliminated properly or quick enough. I don’t know if this is because there are too many toxins or because my liver’s weaker than normal, but it seems as though the toxins are getting into my bloodstream and sometimes even going up to my brain. I end up feeling poisoned because, well, I essentially am being poisoned by my own bodily toxins, toxins that would normally be excreted from my body without me ever noticing.

Long story short, I am essentially a physically debilitated individual at the moment and this is frustrating to say the least, especially for a person who is used to being very active. It’s weird going from a person who runs three or four miles every other day to a person who can’t even walk more than ten minutes without feeling like a syringe of Arsenic just got injected into his veins. It’s one thing to be sick with a short-term illness and have to “take it easy” for a while, but this particular illness probably falls into the long(er) term category. After all, it’s already been almost six months since I got sick. This has been a whole new way of living for me. I feel like a bird whose wings have been clipped.

For all of the above reasons, it’s hard not to get depressed. On one hand, I’m alive right now and that’s a great thing, but once you leave survival mode and start living the “new normal”, you start worrying about how long this will all last. There are many ‘what-ifs’. What if this debilitation lasts forever? What if I can’t make enough money? What if I can’t fulfill my dreams?

Basically, it’s never been more important for me to be present in my life. I always knew being present was important but I never really NEEDED to be present…until now. Because, if I do not learn how to be present, there is a good chance that I will have a complete mental breakdown or be completely consumed by depression or both. I must be in the here and now. I can’t be far in the future where I’m worried about being physically limited, never being “normal again”.

I also can’t be in the past and, boy, I’ve been in the past quite a bit lately, almost as much as I’ve been in the future. My mind races over what happened and how I could have possibly avoided it all. “I should’ve avoided the Levaquin! If only I suspected Lyme sooner, I could have nipped this disease in the bud! I shouldn’t have partied so much on Fourth of July weekend and stayed out so late; maybe that weakened my immune system! Maybe I would have fought off the Lyme if my immune system was stronger! I did too much running in the woods where there were tons of ticks! I shouldn’t have done that! Bad idea!”

Of course, I still don’t definitely know where I got the Lyme from in the first place. I never had any ticks on me as far as I knew, at least not at any point close to the start of my symptoms. I think the last time I had been bitten by a tick was about eight months prior to me showing symptoms. Is it possible that the Lyme was dormant for a while and then came out to play after hiding out for several months? According to some websites I’ve perused and books I’ve read, it’s possible. But, then again, my Lyme was “acute”…meaning I had been infected recently, or at least that’s what it’s supposed to mean. Can the Lyme bacterium (the technical word for it is “borrelia burgdorferi”) be dormant and then become actively acute at an opportune time? Maybe I actually DID have the flu in July and that, combined with Levaquin toxicity, weakened my immune system to such an extent that the Lyme could come out and party. Who knows, it might be possible. There’s so much doctors and specialists still don’t know about Lyme.

Or perhaps I had a tick on me and I never noticed. Maybe it was an extremely small one, like the nymph tick that is about the size of a sesame seed. Maybe it bit me, dropped off and it never left a noticeable bite. I certainly never had any “bullseye rash”, which is supposedly the tell-tale indicator of Lyme.

The only other possible explanation is that I contracted the disease from something that wasn’t a tick. This explanation makes the least sense but also the most sense. It makes the least sense because, for the most part, mainstream medical opinion says you can’t get Lyme from anything but ticks. However, it makes the most sense because I was bitten by an insect two days before I started showing Lyme symptoms. Not a deer tick…

But a deer fly.

Indeed, on July 3, I was lawnmowing my neighbor’s lawn and, at one point, I felt a pinch-like sensation in between my left hand’s pinky and index finger. I looked to see what it could be and I saw one of those pesky deer flies digging into my flesh. I’ve been bitten by those bastards before but, this time, I could really feel the fangs digging in. He was getting a good bite in.

I slapped the fly away and I believe I killed it, too, though I don’t remember for sure. All I know is he got a good bite out of me and I didn’t forget it. Two days later is when I started feeling not-so-hot. Two days is about the right amount of time it would take for the Lyme microbe to enter into my system and start giving me symptoms. Could a deer fly have given me the Lyme? If you do some searching online, you will see that some medical professionals out there do believe that you can get Lyme from other insects, including mosquitos, fleas, and flies. So it’s possible. Again, on one hand it seems implausible, but the timeline makes sense. I was bitten by a fly, I took notice, and, boom, two days later I have Lyme symptoms. Maybe it’s coincidence but that’s a large coincidence, if you ask me.

However I contracted the disease, I still can’t help but wonder why or how Lyme can even exist in the first place. I mean, this is a nasty friggin’ disease! How could God allow this nasty, misery-inducing bacteria to wreak havoc in His kingdom?

Well, some theories suggest Lyme isn’t natural, but a man-made biological weapon engineered on Plum Island during the 1950s, not far from the Connecticut town of—that’s right—Lyme, the town where this disease was first discovered or at least first given a name. The supposed plan for this bio “weapon” was to use it against enemies like the Russians. Infected ticks could be dropped into targeted enemy areas via planes or helicopters, spread bacteria and slowly weaken the enemy. At some point, the Lyme infection could have “accidentally escaped” Plum Island via birds that traveled back and forth from the Connecticut mainland. This is how it may have ended up in the town of Lyme and created a suspicious outbreak in the Northeast.

Many scientists, however, dismiss these “conspiracy theories” as hogwash and point out that the Lyme infection has existed for thousands of years. These scientists cite a discovery a team of researchers made in 2012. While studying a 5,300-year-old mummy known as “Otzi the Iceman” who was discovered along the Austria/Italy border in 1991, the researchers concluded that Otzi had, at some point, contracted Lyme. They reached these conclusions through DNA analysis. How 100% accurate the analysis was may be questionable, but, according to the researchers, Otzi was a Lymey.

In his book Unlocking Lyme: Myths, Truths and Practical Solutions for Chronic Lyme Disease, Dr. William Rawls reiterates that Lyme has, indeed, existed forever and has infected humans forever but has only affected humans on a subtle level...that is, until recently. Rawls emphasizes that tests show "Otzi the Iceman" had Lyme, but tests also show he did not die from Lyme; he died from an arrowhead wound. In fact, Otzi was apparently a very physically-active individual at the time of his death, hiking mountains and transporting goods from village to village. This meant the Lyme didn’t physically debilitate him; it was more likely a subtle, if not a completely dormant, infection. In fact, Lyme actually relies on its host to be ACTIVE as opposed to debilitated since the borrelia spirochete depends on its host to be out and about in the world, getting bites from more ticks, which, in turn, spread and prolong the life of the bacteria. Lyme only became a debilitating disease in the past 30 years and Rawls argues that this is because the human immune system has weakened due to the toxins and stress of modern society. In other words, we think Lyme is a new epidemic but it only seems like one because our poorer immune function.

Honestly, I would feel better if Lyme was, in fact, an ancient disease like Dr. Rawls says it is, because the thought of it being an engineered “biological weapon” infuriates me. If I have a disease like Lyme, I want it to be a natural occurrence, not something that was man-made by a bunch of Nazi, Project-Paper-Clip scientists on Plum Island.

Then again, both theories could be true: that is, it could be both an ancient disease but also man-made. What I mean is that Plum Island scientists may have taken a pre-existing disease and harnessed its power into the form of a tick-borne biological weapon. If this is true, I would say that the current outbreak in the Northeast is likely the end-result of this biological weaponry. I would also say that I likely have Lyme due to man-made, not natural, causes.

But who really knows and does it really change anything anyway? Even if I’m a victim of a man-made “weapon” it wouldn’t be the first time somebody’s been a victim of something man-made. I mean, take guns, for example: they’re man-made. Bombs: man-made. Knives: man-made. Humans have been victims of something man-made throughout time so my victimization is nothing exceptional. It’s not like I’m the one unlucky bastard out there who is a victim. Therefore, I should not be upset about being a victim. Rather, I should be accepting of the situation and react to it in a positive way that counteracts the negativity of the victimizing situation. In other words, if I react negatively to a negative situation, it only doubles the strength of the negativity. If I react as positively as I can to a negative situation, I nullify the negativity.

I’ve always believed that nullifying negativity isn’t just in our own personal interests but in the interests of all mankind, society, the world...even the entire universe. In other words, keeping things positive is something that must be done in order to keep the universe healthy. After all, I believe we are all an extension of God and we are all therefore connected to each other, “plugged in” to a gigantic network that is, basically, the universe, which is collectively -- yes, you got it -- God. The more negativity we nullify in our own lives, the more positive energy we send through said network and the healthier the entire universe becomes. So, if there is anything we can do to keep things positive, we should do it. Being a victim doesn’t help ourselves and it doesn’t help the overall universe. Am I going off on a tangent here? Probably.

The point is that victimization has, indeed, been a constant throughout the history of man. Although victimization is unfortunate, it’s not uncommon; in fact, it’s quite common. So, the question we should be asking ourselves isn’t “Why me?” but “How will I react to the victimization?” Will I be depressed? Will I be angry? Or will I deal with it the best I can and move on with life the best I can?

For me, I’ve tried to deal with the victimization, though I must admit it’s been very challenging at times. Not only is it depressing suffering from Lyme in and of itself but Lyme screws up your chemical balancing in such a way that you sometimes unavoidably have depression anyway. It’s a very lonely disease where, for the most part, you have to stay in your home like some reclusive hermit. I can run an errand here and there and maybe hang out with friends for an hour or two at a nearby house or bar, but doing anything bigger than that would require significant physical activity and significant physical activity makes me feel poisoned. The end result is a feeling of being trapped and that is trying on your psyche. It’s difficult to keep it all together on a mental level. This stage of the disease, the post-near-death stage, has been less about physical survival and more about mental survival. This mental battle is almost as harrowing as the physical battle, if not moreso.

But, again, the challenge here is to take one day at a time, to always be present. You don’t start getting depressed or angry until you leave the present, so you must stay present. You must remember that all that exists is the present. The past cannot be changed. Ever. So everything that happened in the past, anything that may or may not have caused your current situation, is irrelevant. And the future hasn’t even happened yet, so any possible situation that may or may not happen in the future is also irrelevant. Again, all that exists is the present moment. The past no longer exists. And the future doesn’t exist, period. The present is all that exists.

Of course, it’s all the more difficult to remain present when those around you are (unintentionally) trying to pull you out of the present. I’m talking about people who are worried about you and your illness. Some of these people may be very close to you like your husband or wife or children or parents or dog or cat. You will feel their worry like it’s a thick, overwhelming fog emanating from them. You can only ignore these people so much. Fighting their pull outside of the present can sometimes be just as difficult a struggle as remaining present in the first place. I honestly don’t know how to deal with this. We possess the power to keep ourselves in the present, but we don’t possess the power to keep others in the present. They mean well, of course, and who wouldn’t be worried about a loved one’s future? But sometimes their worry doesn’t help the situation or the person they’re worried about. In fact, it rarely helps. Staying present is difficult enough but when you add onto it the fight to resist those people who pull you outside the present…well, it’s not easy. It’s oftentimes a very draining process. I guess what I’m saying is that, overall, staying present isn’t easy and I don’t know a full-proof way of being successful at it. I'd like to be one of those people who say, "Stay present," and it's as simple as that. But it's not that simple. It is a battle. Or maybe 'battle' isn't even the proper word. It's an epic war that lasts your whole human experience.

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.