Welcome To Lyme-Land

...Also Known As Dante’s Eighth Layer of Hell

 

What Is All The Controversy About Anyways...?

And, Can't We All Just Get Along?

 

Never have I seen more passionate, embroiled, confused and confusing, people than you find in Lyme-Land. When you first get slapped with your Lyme diagnosis, unlike being slapped with any other diagnosis, you are not afforded even a mili-second to wrap your head around what your doctor is saying, what it will mean to you, your life, and your loved ones...instead you are whisked off, hurry scurry, pell mell, tumble-bumble, into the whiz-bang world of the most bizarre controversy that will leave your head spinning...and just when you start to get that the lunatics really are running the asylum, you begin to realize that no one in this quagmire even makes sense anymore. And as you stand there stunned by the utter weirdness of it all, you wonder if you have just arrived in Dante’s Eight Layer of Hell...and a voice calls out from behind the din, “Welcome to Lyme Disease.” Immediately followed by nonsensical, “the white zone is for loading and unloading only,” “clean up in isle two,” and a lot of other words that fade back into the overwhelming din.

 

And so just what are all these passionate people fighting over? Wonderful new treatments? How long to test before taking them to market? What to tell the public? Sadly, no, no...and, no. As if you were not gob-stopped already, grab your jaw so it doesn’t hit the ground, they are fighting over what to call it...because, apparently, for whatever reason “Lyme Disease” wasn’t working for them. For myself, however, I am happy just calling it Lyme Disease...it makes sense, it’s simple, and it stretches to cover all the various symptoms, treatments, and issues that make up the disease. But, who am I to say, after all I just arrived here in this crazy mad Lyme-world?!

 

The first order of business, when you are being diagnosed with Lyme Disease is to determine what stage it is in...sort of like cancer. In the early stage, in the first few days surrounding the tick bite when it is either infecting your skin or in your blood stream, it is easy to treat...4-6 weeks of antibiotics are believed to kill the buggers. However, there will always be someone who stands up and says that they still have symptoms...so, lets just say that most can be treated that way in the early stage and can walk away pretty much unscathed from this layer of hell.

 

When the Lyme bacteria (they are still calling it that, bacteria, but at this point no one really knows even what the f’ it is which is another part of the problem), anyways, when the Lyme bacteria disseminates...in other words, starts to invade other tissues, it is simply called “Disseminated Lyme Disease”...that is pretty simple. This is the second stage. However, there is not a lot of talk about this stage because once it has disseminated...the truth is that it has gone too far and you are in the same boat as the third stagers...sowwy.

 

The notorious third stage, and the last stage that they have identified (so far), is what they say it is when it has traveled deep within organs, joints, your brain and central nervous system...it is simply called “Late Stage Lyme Disease.” Adding to the confusion, when it affects your central nervous system, they call it “Neurological Lyme Disease” and in the joints they call it “Lyme Arthritis” although this tends to piss off Rheumatologists for some odd reason no one has been able to explain (yet)...but my guess is because Lyme Arthritis does not always include noticeable redness or swelling and the “tis” part of words like “arthritis” means swelling. Although that hardly warrants them getting their undies all in a knot the way they do, but who knows maybe they all go to undie knotting seminars that we don't know about.  Anyways, there is way too much hostility over what to call things.

 

So someone pissed them off (the Rheumatologists), and they are not the only ones...doctors of every kind just completely weird out when it comes to a patient with Lyme Disease. And just sitting in their office is enough to totally discombobulate them...and you will have ringside seat to watch the show as they go completely bonkers and become very angry, mean, and downright rude...my only guess is that maybe they have been telling themselves that Lyme Disease does not really exist and then their self-induced delusion is somehow shattered by your existence and in their complete and total break from reality all they seem to be able to do is react to that with a rage that puts road rage to shame...if you had brought your poodle to the office visit who knows what would have happened?! If you happen to be the Lyme patient in the doctors office while they are contorting themselves like that, you are probably going, “WTF?!” And I suppose it is the mere shock of it all that stuns most Lyme patients into quietly “exiting stage left” while expressions of, “is he/she (the doctor) really that crazy?” dance across their faces...and count themselves lucky to have survived such a medical meltdown.

 

Just as you have survived all that, and begin to put the trip to Bizzaro’s Doctor-Land behind you, you are struck with the fear all Lyme patients unfortunately have to face at one point or another, as you wonder, “how in the world will I ever get someone to help me?”

 

And if you are like most Lyme patients, and I know I am, you will probably make what will seem like the second biggest mistake of your life and query the internet for more information...and woowee, if you thought poorly acting doctors were a blast to your sense of the world, when you get to the internet it is with even more confusion. I have been staring at it for months now, and I am utterly convinced that it is designed to keep you perpetually confused and in a mental-zombie-like state...and there are, of course, the feeders lining the perimeter waiting to feed off the mess of Lyme patients (that you are now one of) just trying to get a grip of what the heck is going on. They will sell you this crazy idea, and that 10 bottles of supplements, and after you get this thing over here, they have the next thing already to sell you on. If it came out in a health food magazine, or someone came up with the name of a strange berry, or they shoved some dirt (ok, clay) in a capsule...like good little drugged out asylum patients, people with Lyme diagnosis stand there with their hands out taking what is being fed them...and you would just about think you were the only one awake in Lyme Matrix as you watch this happening but then you realize that every other Lyme patient is going through the same crazy mess.

 

Everything you have taken has made you worse, the marketers tell you that this is what it is suppose to do, that this means it is working. At some point you lose the ability to question that claim and eagerly look forward to trying the next thing so that you can feel even worse than before. All this reminds me of a spiritual bardo (test) in Tibetan Buddhism, where failing it you run the risk of getting lost for tens of thousands of years in the afterlife...only here it is perpetual Lyme-Land.  One might liken it to a sort of Limbo only there is too much "try this, try that" going on for there to be any Limbo. Like standing in the middle of a busy city intersection, you want to put your hands over your ears and just scream, “STOP the madness!” And you try to stop your own self...you try to get organized, you try to take a logical approach...to sort through all the treatments out there and make more thought out decisions, but when you do...you are introduced to a new layer of Lyme-World and realize that you might as well skip the “what do we do about it?” because frankly no one even knows...and I mean no one.

 

Add to that, the three main organizational Lyme powerhouses are fighting each other, vehemently I might add, are in truth only fighting (way too passionately) over what to call the later stages of Lyme that do not clear up with the antibiotics. Meanwhile you have been pumped full of antibiotics, put on restrictive diets, taken supplements...tried nearly everything that ever existed in natural food stores...you are sicker than a dog, the toilet is your best friend, you don’t know your *ss from a hole in the ground anymore and you haven’t brushed your hair (or teeth) in weeks, no longer even notice when you are leaving the house in your pajamas, and generally feel like death warmed over...and “they” are fighting about what to call it. Any sane person at this point, upon discovering this, wants to scream, “WTF people, really? REALLY?!” Yes, Virginia, really. Sad, tragic, fact.

 

In Lymie-half-slumber, the mistake is made in thinking that they who are fighting over what the f’ to call it (He Who Walks Behind The Corn), are denying that it exists...and so Lymies freak out, they start creating drama, spamming blogs, protesting, etc over something that was never even the issue. Just as you thought you were done asking, “wtf, really?” you find yourself wondering that about your fellow Lyme-World inmates. And just when you are wondering how it is even possible that everyone involved with Lyme could be so horribly lost, and everything about how Lyme is handled could be messed up that completely...and whether you are the only sane person left it is then that you really start to realize that no one knows anything about Lyme...about what it is (bacteria, protazoa, something else...the only thing they agree on is that it is alive...*doing the best Young Frankenstein impression, "It is A-L-I-V-E!"*), what it does exactly to our bodies, and more importantly what we could about it. That no one knows; that you have been diagnosed with something so poorly understood; and that there is so much controversy that you cannot even have an intelligent discussion about it much less ask a question...you begin to realize the devastating position you are in. Standing in what feels very much like the kid in Dr. Suess’s, Hoober Bloob Highway...and you wish you could turn around and walk back out and pretend you had never gotten your diagnosis (what was it you were thinking anyways when all you wanted was a diagnosis?!).

 

But as soon as you do, as soon as you walk away, you realize that there is no escape from this crazy place because even alone, by yourself, you still have all these debilitating symptoms...the pain that wracks your body, the countless neurological issues, and you’d master those if you were not always so dang fatigued or mentally confused. You lay there in your bed or on your couch trying to hang onto what shred of a memory you have left of what your life used to be like...you pray...you wish...you cry...you beg...every day hoping that the powers that be will pull their heads out of their *sses and figure this out. You grab your cane/walker/wheelchair and manage to go out your front door only to be met again by the onslaught of snake oil dealers and well meaning salesmen that just want to help you feel better. If you make it as far as the grocery store, then there is the long list of what you should or should not have...which nobody really knows either, but they have said...and after all they just wanted you to feel better...if you have managed to make it to the grocery store and managed to figure out something you can eat, you are ahead of most...hopefully now you can also remember what car was yours and the way home.

 

So here is the issue...one side is saying that after 2-6 weeks of antibiotics any true “infection” should be treated and dead...and if not, then it inherently implies that whatever it is, it is not a chronic “bacterial” infection but something else...which, inherently begs the question of, “if not that, then what else could it be?” except for the fact that Lymies never seem to separate the notion that maybe Lyme is not a bacteria with their mistaken idea that these people are saying it doesn’t exist...which they haven’t said at all (but once Lyme patients freak out, they may just say to get rid of you as quickly as possible). To them, *something* exists...they are just not sure what (yet)...and because no one is letting them ask the question, probably because without fail they trip over that they just said what they said and cannot move past it (so their side is fighting to ask the question and open the discussion). The other side, says no...it IS a “bacteria”...and it “persists”...and needs continued antibiotic treatment. Then Lymies, in their stupor, are like, “yeah, what he/she said!” and continue to swallow boat loads of antibiotics. Some will, of course, say that they felt better on them (I do)...and even though studies and tests have shown this not to be the case they cannot let go of the connection. And what happens next is they all begin to sound like a squabbling family all fighting amongst themselves...the patients, “we are sick we need help,” the “it persists” group saying, “it persists...long term antibiotics even though they don’t really work,” to wit the Lymies now divide...some are like, “yeah, yeah, give me all you got!” Others are like, “hmm...maybe this isn’t such a good idea...but what choice do I have?” And still others are like, “no way, I don't need no stinkin' antibiotics.” And divided we stand, meanwhile the first group is saying...“the antibiotics are not working, we need to come up with something else.” And no one, absolutely no one, is listening to each other. Then there is a mysterious third group, who doesn’t say much, but always seems to confound the matter, that claims it is not a “chronic infection” nor is it an “infection that persists after treatment,” but claims what is happening to Lyme patients should rightfully be called “post Lyme Treatment Lyme Disease Syndrome.” Ack!

 

All the while this crazy mess is raging on, tempers flaring, Lymies desperately trying every bizarre idea anyone anywhere can come up with no matter how nonsensical it sounds...after all, they just want out of this crazy mess, and who could blame them (I say blame the vultures making money off them, but what do I know?! I just got here remember?), everyone is shouting at each other...and absolutely no one is listening. Talk about a sticky hot mess!

 

The fact is, that *something* about Lyme is making people very sick...the doctors (whatever side they are siding with) do know this, and they can see this...and each group is very concerned for your wellbeing...they all just have different ideas about what is not-working and why. And this is good, and even necessary, because no one can get busying figuring out what works until we all first identify what isn’t working. And, so far...absolutely nothing truly works. Nothing. Nada. Zip. Nothing. You have Lyme, and although there are many things you can do, none of it works...how lovely.

 

When you have been diagnosed with late stage Lyme, you have been given a virtual death sentence because the Doctors’, Winken, Blinken, and Nod here are too busy not getting past what the f’ to call what is happening to you...that there is no way, at least not anytime soon, that they will be able to get to discussing what MIGHT work. So, essentially, you are f*ck’d...really, really, f*ck’d...you, me, and the rest of us unfortante Lymies. And, it is unlikely to change anytime soon.

 

So here are the facts...Lyme spirochetes can live un-symptomatically inside you for years, maybe even your whole life...like the chicken pox/shingles virus which stays dormant for extended periods of time. Although there are a great many theories, like stress, the fact is NO ONE knows why these things can come out of their quiet and peaceful co-existence in you to suddenly wreck havoc in your life. And, like untreated shingles, they can and do go dormant again...and again, NO ONE knows why. And as good as doctors are, and they are...and as good as medical science is, and it is...they still do not know what turns these invaders on...or what eventually shuts them off. My best guess is that, up until now, it has simply been time. But what do I know *shrugs* I just got here?!

 

One of the biggest problems among Lyme patients, and probably also a fair number of providers, is that whatever one is doing at the time that Lyme decides to go quiet...people overwhelmingly cannot seem to help but attribute what they were doing to having caused the Lyme go quiet...even though no causal relation can be found. And while quiet may seem good, it is not even known (yet) IF it is good...because it could simply mean that your immune system has shut down and that is not very good even though to the person experiencing it, it would seem like all their symptoms just went away. Lyme likes to suppress your immune system, one of its handy survival mechanisms. So there is no standard by which to gauge the effectiveness of any treatment (yet), or rather, the standard that exists (feeling better or having less symptoms) does not really measure if something worked or not. Before we can go on to discuss things that might work, we first need to decide on a true standard (true, like a line is true), one that can empirically show that whatever Lyme is...is made dead and the body is free.

 

Then we need to be able to accept what we know about Lyme...and what we know is that absolutely no one (yet), has ever been able to prove that they have killed off late stage Lyme spirochetes. To the contrary, study after study have shown live Lyme spirochetes pulled from bodies even after lengthy treatments. So, we DO know, that the antibiotics do not work. And we DO know that long term antibiotics are hard on the body and can cause many other disastrous problems. And yet, not unlike chemotherapy, and as imperfect as they may be, long term antibiotics are the best treatment we have available. So that is what I take. In that category, Burascano is the leading authority on the various antibiotics used, although currently doctors are branching out to other antibiotics. Currently, Buhner is the leading authority on understanding the nature of Lyme...and even though he is an herbalist and generally opposed to antibiotics, he supports antibiotics in the treatment of Lyme. Buhner offers an herbal protocol that can be taken with the antibiotics, and so I will also being doing that. But still, no way has ever been proven to kill Lyme.

 

Since arriving in this new layer of Dante-like whirlwind of a hell...trying just to stand still quietly in one place and create a plan as every snake oil dealer jumps out of the chaos at you to sell you on their wares...even if it doesn’t involve money, they are always in for the sell. As I watch the three sides all saying virtually the same thing, but all thinking that they are denying each other’s concerns...what rises above the noise is this...

 

“WHAT WE HAVE NOW IS NOT WORKING…WE NEED TO SORT THIS OUT PEOPLE.” 

 

What I hear in each of the three sides, is caring concern...genuine care and concern for those who have had the unfortunate fortune to be diagnosed with late stage Lyme Disease. Although maybe you just want to bang all their heads together at this point and tell them, "for the love of G-d to just “STOP"...at least they do care. Many with Lyme do not think they care, and use this to justify throwing daggers at them along with long strings of criticisms and insults (boy guys, what a way to encourage them to help us...not), but I hear it. I don’t know if it was because I stood still, but I hear it. And in that I know that we all share a common ground...which, thankfully, gives us a place to begin.

 

And, dare I say, it is about half past time to begin...as some of us are sick and suffering here...and, at least, I for one would like some answers. 
 

Welcome to Lyme-Land 

Zen & The Art of Lyme Disease