First off: IT’S A JOKE, PEOPLE. “Lymes.” I’m trying to keep it light here, because….
The Internet is a terrible, scary place, full of truths, partial truths, misinformation, and flat-out lies–all indistinguishable from each other on their face. And speaking of face–we’ve got good old Facebook mucking it up, 24 hours a day, 8 days a week. I’d bet money that 99% of what you see on Facebook is false. What’s a poor Lymie to do? How does one know where to get credible information about a disease that is the subject of the biggest medical fraud in the history of the world?
In the land of Facebook, many turn to “groups.” There are groups that discuss treatment, groups for emotional support, groups for cousins of dogs whose hamster met a guy who got Lyme from a magical dragonfly. Frankly, these groups probably do more harm than good.
Granted, I probably wouldn’t be where I am today, blogging about the science and the Cryme, if I hadn’t crossed paths with certain people in certain groups. But I also had my share of run-ins with group administrators who were bent on protecting members emotionally. Yep, share a *real* fact (distinguishable by its proportional relationship to level of scariness), and get scolded, or worse–booted, for the egregious crime of intent to cause knowledge.
In my circle, we don’t sugar-coat. We respect you enough to tell you straight-up, “Yeah, this disease totally sucks, and there’s no cure.” Seriously, what would be the point of us lying about that? It would be completely illogical of me to think that I’d somehow gain admirers by saying “You have a sucky disease for which there is no cure.” I’m not in this for popularity, and it certainly takes a thick skin to brush off the frequent attacks against sensible, forthright sharing of information.
I really wonder about people who claim to want to understand Lyme, ask a bunch of questions, then, when the topic of incurability comes up, they start slinging insults and calling us liars. Don’t you think that if I were out to build a fan base, I’d come up with a better lie? One like, “Lyme is curable with two years of intravenous antibiotics, B-12 injections, heparin, flagyl and various supplements, vitamins, herbal remedies, chelation, ozone, and detox?”
Oh….wait. Somebody already has dibs on that one.
I don’t know about you, but when a friend lies to me, I have to question that person’s integrity for the rest of time. If he is willing to lie once, even with the good intention of sparing my feelings, how do I know when I can trust him? That’s why I make sure that what I’m saying is based in fact, verifiable, and that I’m consistently truthful. And if I make a mistake, I admit it.
In my circle, we support our statements with published science.
Those who claim “Lyme is curable with two years of intravenous antibiotics, B-12 injections, heparin, flagyl and various supplements, vitamins, herbal remedies, chelation, ozone, and detox” do not support their statements with published science.
Here’s where people say, “But everyone knows that half of peer-reviewed studies are bogus!” Sure, but the ones we use are mostly by the actual perpetrators of the Lyme Cryme, and they illustrate how the perps’ positions changed over time to support their profit motives. Numerous others, by research groups at universities, and groups supported by the NIH, simply add to the established science or serve to demonstrate a parallel mechanism.
Usually you have to seek out the truth for yourself, because the truth-tellers, for the most part, have been booted from the groups or don’t participate in them any more, for the aforementioned reasons. So, it stands to reason that if someone is constantly in your face saying things like, “Lyme is curable with two years of intravenous antibiotics, B-12 injections, heparin, flagyl and various supplements, vitamins, herbal remedies, chelation, ozone, and detox,” it might be wise to question the validity of that claim. Then, if that claim is not valid, question their other claims. (Look around: how many people have been cured by such treatments?)
This idea of coddling the fragile psyches of Lymies is the cancer of Lymeland, seeping into people’s personal posts, permeating everything, everywhere. “Why do you have to be so negative?” “Look at my cute kitty meme and bust that biofilm!” “Why are you holding back? Just tell us what the treatment is!” (As if I am the Great and Powerful Oz, Keeper of Lyme Cures. I think you might be confusing me with someone else. See above, and note that Oz was outed in the end.)
Then you have the constant barrage of newspaper and magazine article shares. “Man Cures Lyme by Drinking His Own Urine!” “Lyme Disease Declared An [sic] Endemic in Seven Alabama Counties.” On those, my suggestion is to default to a high level of suspicion, because the media in general don’t have a clue about Lyme and are not scientifically qualified to write about it. In the case of the Alabama story, I have no doubt that the place is infested with itty bitty crawling borrelia factories. The problem is that the writers oftentimes refer back to the CDC or the Lyme crooks or some other unreliable source for details to flesh out the rest of the article, ruining it for everyone.
Don’t be surprised if I comment on your share of an article to point out its inaccuracies or to suggest not sharing it. If you had a giant booger hanging out of your nose unawares, would you want a friend to mention it to you? Wouldn’t you feel betrayed by a friend who let you walk around all day with a giant booger hanging out of your nose? Friends don’t let friends post stupid stuff on Facebook.
And for the love of God, don’t listen to the non-profits, most importantly the Lyme Disease Association (LDA). As a matter of fact, disregard anyone who uses the word “awareness.” Awareness is the hamster wheel time machine of perpetual obliviation. Awareness never got anyone anything but a ribbon.
The one non-profit that shares accurate information and is worthy of your support is may12.org. My main group is http://www.facebook.com/groups/OccupyUSDOJ. Tell ’em Beaux sent you.
Categories: Activism, Lyme Disease, Snarktastic
I just couldnt read the article once I saw you called LYME DISEASE “lymes”. In my experience, anyone who cant get the name right cant be trusted. There is no S in Lyme.
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Silly, of course I know that. Sheesh…can’t take a joke! Read my other stuff and you’ll see that this is one of only a handful of Lyme resources that are actually accurate.
I normally equate awareness with education, but I suppose they are not exactly the same thing. There are too few words to say what I want to do in a nice way. Education/awareness/advocacy sounds normal. “Take a chainsaw to the party line” or “duct tape the denialists and throw them and their words out a window” just doesn’t have the same “ring” and usually makes people back away slowly. 😉 Can’t get much accomplished that way.
But I understand what you’re saying. You are great with words–maybe you can give me some nice-sounding ones. I actually caught myself being jealous the ENTIRE DAMN TIME I was reading your blog. How dare someone else entertain me more than I entertain myself?! Trust me–it’s not easy, but you accomplished it.
Thanks for the laughs (and good info).
Reblogged this on The Other Side Of The Stretcher.