Real Blogger, Fake Helping.

This is a critique of the snot-on-paper opinion piece titled “Real Housewife. Fake Disease” written by @RussellSaunder1 at

http://www.thedailybeast.com/articles/2015/01/21/real-housewife-fake-disease.html

The first problem with his article is the title.

Real Housewife, Fake Disease. 

It is obviously an opinion piece yet presented as something more than it is because there is a picture of a dude in a white coat with one of those mini-cymbals wrapped around his head (probably because his jokes need a bit more flare).

You know–unlike mine.  And yes, the misspelling is deliberate.  Wait for it.

Ok.  “Fake Disease.”  That itself is about as defined as Chronic Lyme is.  That is to say it is not.  It can have many definitions.  Just because the IDSA/CDC/various bloggers define Chronic Lyme as one thing does not mean it is correct.  Hello!!! McSheep!

A better way to say this is something I heard over and over in my childhood : Don’t believe everything you read!  Yes, I was taught to look at things 5 different ways before I would believe it; my first lesson being that time my sister told me Ernie was going to make an appearance on Gilligan’s Island so I would watch it. 0___0   HE. NEVER. SHOWED.

So okay.  Fake diseases.  I assume he means it as a disease that does not exist from what he says in the rest of his opinion rant /article.  His reason it does not exist is the explanation from the CDC et. al.  However, if it is not a disease, why does it even have a name?  I’ll tell ya why! Because they are disagreeing with the science behind it.

Little hint here: There aren’t pandas with microscopes on one side and THE BEST SCIENTISTS EVER on the other.  They are experts on each side.  They disagree.  Sometimes science is not settled.  Why does this happen?  Well, it is usually because things are complex.

How complex exactly is the biology of Lyme (and all other tick co-infections that can come with it that are not separated by a new and improved name)?  And doesn’t the U.S. have billions of dollars to do research so if anyone would know, we would?  Don’t you trust doctors?  You must be a conspiracy loon.

All great questions by average people.  I asked myself these questions years ago. Most Lyme patients have.

Its biology is COMPLEX SQUARED. I’ll get to why. Yes, the U.S. has billions of dollars, but they have not spent it on Lyme research.  The money they have spent has gone to the same few people who definitely do not want to spend money to prove themselves wrong on purpose (though they have once in a while done that by accident) or oppose the results they already came up with (for many reasons).  Most GOOD scientists want to learn, improve on what they did (which by itself can be proving yourself wrong a bunch of times).  This is not the way it is done these days, unfortunately, with research dollars.  Want to understand why? Read http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0020124

There are many good doctors out there.  However, some are not.  ALL are restricted beyond their wildest dreams as far as diagnosis and treatment.  So they rely on clinical guidelines.  However, these guidelines are usually formed by committees who don’t see patients and sometimes are the same researchers trying to make the research/patent dollars.

In essence: A Nice Big Crap Circle.

In order to understand a group of people with a certain disease, their advocates, their doctors, you need to actually meet them, go to their doctors with them, see everything up close and factual like.

But not our DOC here.  No.  He picks a celebrity on the internets who has lots more money than your average patient (even though some seem to believe one risk of getting chronic Lyme is having a higher income), is a bit eccentric– and judge all patients on that.  Heck, if I did that for doctor bloggers I’d think all of them are utterly closed-minded, believe the first thing any agency with 3 letters tells them, never double check things, and have a need to feel better about themselves by writing about others while making themselves look super-smart, and wrapping it in an I-care-burrito.

The part that is the most intriguing, and possibly most revealing about the man behind the cymbal, is when he paints the Lyme advocate as rabid and crazy and oh so (wrongly) convinced that this disease is real.

Lemme splain why people are so convinced: Because the best possible way to convince something of something is to actually live it.  And not feel it for a day.  Feel it for a long, long time.

And lemme splain another thing that should be pretty simple: When you have been burned by multiple doctors (as many with Lyme have been) you get to be a bit skeptical.  Ok a lot skeptical.  Of everything.

I actually doubted the AWESOMEST bakery in town truly gave me a Bavarian cream doughnut until I found the Bavarian cream inside it.  True story.

So to claim that these people are, to use my favorite original phrase, won over by a cupcake and a smile when someone says “you have Lyme disease” is just illogical.   I dare say Spock would break down laughing at that.

So no.  It is not a fake disease.  It is a disease that has multiple moods. Let me give you an example:

You can have Babesiosis and Borrelia burgdorferi together.  What do we call this disease? “Lyme disease with a side of Babe”?  Or maybe the Babesiosis is dominant and the immune system is actually keeping the Bb at bay.  Is this “Lyme with a side of Babe once removed“ ?

There are also multiple (hundreds) of different strains of Bb.  So if you only have Bb you still have Lyme, but do you have the same Lyme they have been studying?  And if you do, you tellin me that bad boy hasn’t mutated at all in the last 30 or so years?

And for the more advanced in the class, I have found this study very interesting.  I can’t wait to see how, or if, it messed up any research that used these.   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318418/   This paper is from 2012. Shortened, what this study partly ended up doing: “We show that two strains isolated from the same tick and both originally named N40 are in fact very distinct.”

There are still many out there who insist they know all there is to know about Lyme.  Are they in real life?

So while the doc blogs about how one blonde celebrity may or may not be doing the right thing for the disease he doesn’t think she has, though he feels very sorry for her, mostly because she is too stupid to find out what she REALLY HAS, and thinks she is dangerous because she is spreading this to all the gullible people out there, the rest of us will look at the more complex aspects of this disease, fight the lies, teach the facts, and very *un-fakely* help people.

–Loon Out

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