The first letter on this blog will of course be the first letter that sparked the idea.
Chris had written this in response to a person who kept claiming that Lyme disease concern was a falsity; a "rich person's disease" (I believe "Trump" was used...)-- Saying that it is "responsive to common antibiotic treatment, non-fatal, non-communicable", etc...It goes on. Someone rather confident in the nothing-ness of this illness or the people it infects, despite the fact that people have actually died from complications, after suffering for DECADES....To have any hope of curing it-- the window is tiny, the proper diagnosis never within easy reach, and beneath the skin, the bacteria flourish...undetected....No wonder it's doing so well and has now been detected in not just ticks but mosquitos...
...This person was rude and disrespectful. Moreover, an example of someone with rather cruel intent, going on to a forum where people discuss and try to figure out their lives and situations..peacefully. This person's posts on this community's forum were in bad taste.
Chris wanted to take a stance for himself and others in his condition...And his voice came out:
Thank You for Reading--
I don't know who you are, but I wanted to reach out, to just give you an alternative perspective on Lyme — and all that that entails.
I'm Chris, I'm 33 and I live in New York. I am a musician, an artist, a science lover and thinker. I'm secular (in fact, almost anti-theist), and I have no patience for pseudo-science, conspiracy theories, and the like. I've lived in many places, including LA, Virginia, NY, and Salt Lake City and have developed a keen eye for socially-inspired, superstitious philosophies of different groups.
I was a hard worker. I had perfect SATs and perfect grades. I studied commercial music and jazz piano in college, went on to be signed to a label in LA, and eventually toured the world (I had a mini hit in Japan). As the indie/alt rock industry started to change, I was in advertising in NY and was finally making "adult money"...for literally one year of my life, I made over $28,000 in a year. For the first time. Before that, I was always working one crappy side job or another while working hours a day writing music. I've written thousands of songs; it’s my life, my art and love. I was always broke as hell. Because I got lucky and someone at a famous ad agency in NY loved my band and hired me, after two years of pitching ad music, I finally won some huge campaigns and made an average-to-low income for the first time, but to me, I was living like a king. I could afford new microphones and a decent Korg keyboard.
I'm just setting up my personality.
I'm obsessed with naturalism, objective reality. I was in doubt about lyme for months when I first had nervous system issues and never-ending flu symptoms. I too thought I was living in a world where such diseases were impossible, and it was more likely that rednecks were being hypochondriacs. I hate superstition. I thought my way out of christianity as a 12-year old. I was brought up to never call in sick; I’m the kind of guy that would just pop a Sudafed and drag in to school or work if I had a cold.
Without boring you on my hellish journey through Lyme disease the last two years, I want to paint you my current situation. I can fill you in on all the details if you need them, but for the sake of this message, I ask you to believe that I'm competent, intellectual, open-minded..... and I believe strongly that I am infected with Lyme disease. And remember, two years ago: living my dream, finally successful after a decade of struggle as a musician, and zero health issues. ZERO. I ran daily; I worked out and loved it.
Here's my life now: I wake up in the morning with a feeling of a hangover (no drinking anymore, of course). I wonder if its 3 AM — nope, 8:30. I wonder how I'm going to make it through today. My wrists and ankles twitch in protest (charlie-horse-like muscle spasms). My neck, just above the site of the tick bite two years back, feels strange, tight and painful... there's been a new sensation of squirming happening too (please, you may be calling my competence into question this very moment, again, just assume you can trust me like a good friend. We probably would be if we knew each other. I'm describing this as straightforward and real as possible). I stand up, dizzy, steadying myself. My vision swims - this dizziness and visual strangeness continues through the day, although it lessens after an hour or two of being awake.
My ears are making high-pitched noises. Sometimes, my left ear makes an even lower-pitched sound, sometimes my right. But always, the high-pitched whine is there. I'm starting to not notice it anymore, but when I listen, it’s there (again, you’re thinking, like many docs I’ve seen, “Well; this guy’s a musician”….. Remember, I've asked, for the sake of this message, just trust me. It’s not an effect from loud music.) I know my ears intimately as a mixing engineer and producer, I've always been obsessed with ear plugs - I buy them in bulk. I received frequent hearing tests and had perfect hearing, and all these symptoms showed up at the same time as my many, many other neurological and flu-like lyme symptoms…
…OK, ok, I'm going to stop justifying every possible symptom and just assume you can believe me from here-on-out….
The pain is in my stomach, and throbbing in my head. I don't really notice the headaches anymore. I try to get going; after some coffee and meditation and reading for two hours …Only then, I finally feel somewhat like I'll be able to drag myself into work. I teach music in Queens. I take the antibiotics and supplements “required”, though I have no idea if they're even working. Keep in mind, however, when I’ve given up the antibiotics in protest, weeks later I can’t even move or get out of bed..... Clearly, there is a pathogenic element to this. And it feels like a disease. A person knows when he/she is sick - Again; just gotta trust me here.
Or, ask my girlfriend/partner - She could probably convince you even better.
I am tired all the time. Not tired, like depressed or fed-up; it feels like this god-awful combination of a hangover, the flu, and as if someone beat me over the head with a frying pan. It’s hard to focus and finish things.
My singing voice, my life, my bread and butter, has all but disappeared. It's a very neurological thing— to sing. It's very hard to summon the energy to sing, and even then I sound different. Seeing an old friend lately, she ran up and embraced me, and then frowned, looked sad, and said.... "you sound different, your voice is different." My playing and songs have become slower. My gait has become different, I struggle to keep balanced.
Because Lyme is such a controversial disease, everyone just assumes I'm full of crap. Do you have any idea how nightmarish that is? Think about it.
Think about being held down in every aspect of life by this obviously pathogenic weight, and not even getting credit for it.
Think about the daily struggle to go to work and still barely being able to afford medicine or my bills.
My only saving grace is my girlfriend, who believes me 100% - She’s gone through having a cavernous angioma— a malformed blood vessel/ tumor-esque brain condition, which caused her to have seizures . Before this happened, she had a frightening, uneasy feeling, and “medical experts” just thought she was full of it; no one knew or understood and wrote it off as something not worth worrying over …Until, of course, she was found purple-lipped and unconscious from one of several grand-mal seizures. She received a “simple” brain surgery procedure and it’s fixed now.....
…But I think it’s why she didn't judge me when everyone else, even old friends and family, did. We started a relationship, and now she's seen every aspect of this disease. I woke up this morning to her in tears... She said I was twitching and writhing in my sleep. I have intense dreams, unlike any I've ever had - they are full color, visceral, nightmarish and they are full narratives - they go on and on with consistent characters; it’s hard to convey here.
I didn't dream often after being 12 years old.... Now, this has been occurring every night. I've lost significant bladder control, libido is all over the place (some weeks I'm over-horny and some weeks I'm an asexual little frog). Cold and heat treat me like a 90-year old man. I shiver uncontrollably in brisk conditions. I have strange bumps and red lines (a symptom of Bartonella..... very well documented) appear on my back. I have strange red bumps on my ankles. Small cuts don't seem to heal very well. Two years ago, a cut was healed over in like a day. I felt like Wolverine from X-Men..... I often bragged about my super-healing ability.
Read the history of AIDS, dude.
People aren't good with disease, especially when its hard to see on the outside. Especially when its the outsiders getting it. You said its a “rich person’s” disease; I just wanted to give you the truth of my situation.
I'm broke and scared. I don't know what to do. I don't recognize this world, where it seems like people would rather hold it against victims than help them, in line with whatever their bias is.
I want to propose a bias to you:
We've been sold a new religion - that we're living in the future, in an age where these kinds of infections are a thing of the past. We're being sold that times are better than ever; that we've finally 'made it'.
I want to remind you that these are the times in human history when things truly go to hell in a hand-basket. Evolution and nature is ever-vigilant. Vector-borne disease has been a surprise every time.... Humans realize it after it’s too late. Vector-borne disease is a big deal. I'm telling you, through years of science research and learning, through years of thinking, philosophy, and books on disease history..... nature finds a way. It has a unique opportunity right now. It suppresses the immune system, and stays clinging on in the blood of humans - a population, by the way, which has superseded any vertebrate species in the history of the world. A population which interbreeds and intermingles with each other globally, on a scale never before seen. We support more species of life than any other animal has, ever. This is a unique, novel situation.
As I mentioned earlier, I despise psudeo-science, and many of the “lymies” really get to me with their BS remedies— rife machines, snakes oils, nonsense. As far as I'm concerned, this is a textbook example of bias on both sides. But I've seen teenage girls in wheelchairs, wise older men losing wives…These aren't the kind of people that have any motivation to fake or exaggerate.
I HATE telling people I'm sick. I had two bosses begging me not to leave. I was their most promising new writer, this was everything I worked for my whole life.
I lost my two bands in NY who were almost done with new records. I am nothing but an unbridled passion for success, music, and science.
I've lost everything. Why? What has whining about being sick gotten me? I'm broke and my own family won't talk to me, because its so awkward and no one knows who to believe or what to do. Why? Why would I do these things?
I would give my right leg to be rid of this thing. I'm not kidding. It wouldn't even be a hard decision, I'd whip off my pants and say, "Someone get me a bottle of whiskey".
This is a nightmare, man. And it’s real. And I'm broke as hell, so don't represent this disease like a “rich disease” — in some strange attempt to create more bias against it. Is it really a case of mass delusion on a level never seen before?
Now I ask you - if we're a humanitarian culture, why isn't mental illness just as big of a medical problem anyway? It’s keeping people from living their lives; they still suffer profoundly.
The claim of Lyme being psychological is not a justification for hate or flippancy. Where's the love gone? I mean it. I've been to so many doctors who, when I walk in with my claims of Lyme disease, are already rolling their eyes at me.
Do you have any idea how much that hurts?
Do you have any idea how much I just want to figure this out and get on with my life?
The bias is real, and on both sides..... but take it from one science-guy..... I'm convinced this is a novel vector borne disease, with the ability to suppress the immune system. I suspect it also has the ability to release neurotoxins. I suspect that it works with Bartonella to infect blood cells. I feel like my whole body is in this weird low energy state.
I want you to notice that your only recourse is to call into question the validity of the sources - to question the people. That isn't science, or love. Disease is an ever-evolving, ever inventive monster.