Tuesday, February 28, 2012

The CDC is Full of Idiots, or, Antibiotics for Fun and Profit!

Last week, I finished my first round of antibiotics for Lyme Disease and a Bartonella Co-Infection.

According to the CDC, nothing more than a 28-day regimen of antibiotics is required. So, I'M CURED!  Right? No?

So you follow their imaginary flow chart.

Is there neurological symptoms present?

Yes. (Or, hell yes.  Whichever.)

That means that I fall into, according to the CDC, the 10-20% of patients that now have "Post Treatment Lyme Disease Syndrome".  Aha.  Thanks, CDC.  Now what? They tell me I could take months or even years to fully feel the effects of my "cure", because the disease did so much damage.

Let me get this straight:
Take antibiotics for 28 days.  Call me in 5 years.  Got it.

Now, the IDSA (Infectious Diseases Society of America) has gotten in the mix.  Why?  Because this band of misfits makes recommendations, which in turn dictates what insurance companies deem fair and reasonable treatment. This is insurance talk for "What we shell cash out for".

They do address what they refer to as "Late Neurologic Lyme Disease", but they really want definitive proof there is actually something wrong, like a lumbar puncture.  Having constant pain for 2+ years, along with unexplained brain fog, word loss, short-term memory loss and muscle spasms and twitches throughout the body that are interfering in my quality of life are not considered proof.  Of course not. Because it's totally common to work 60+ hours a week building a successful business, only to one day realize I can't remember to pay bills or calculate payroll accurately.  It's perfectly normal to learn new things all the time, spend my free time researching concepts and philosophies related to my field, read technical psychological texts for fun, then one day realize I can't follow a 3-step recipe with any degree of clarity or success. Sure, CDC.  Thanks, IDSA.

But they might just believe something is wrong.  Fab.  What then?  Well, IV antibiotics, of course. For up to 4 weeks.  Then I will be cured, right? They don't know.  What they say they know is this:  there is no evidence that prolonged antibiotic therapy will work.  And, there is no evidence to support treating Bartonella.

So, let's recap:  Positive for Lyme?  Have some pills.  After the end of the month, wait.  Wait until the symptoms go away.  But if you are persistent enough, we might just give you a few weeks more of antibiotics in IV form.  Then, you're cured. It just might take a while for your body to get the message.  Until then, continue to not work, not participate in life.  Once you begin to feel better, this will signify that you are cured.  But still, take it easy.  And above all, reduce your stress.  Mmmmhmmmm.

The other option is:
Switch insurance to a PPO.  Seek treatment from a doctor that can't advertise he treats Lyme Disease for fear of having his license pulled.  Get him to treat you until your symptoms go away, at considerable cost because he can't work with insurance companies.  Keep treating until your disease is in remission.

So I figure this: I got a lot of waiting to do.  While I'm sitting around watching the world go by, reducing my stress by not participating, I might as well be dosing up my body with antibiotics to completely off-the-chart toxic levels.  You know, while I wait.  Then, when I get better, all the assclowns and fuckwits at the CDC and IDSA can say that it was my first 28 day treatment that finally started working.

Or better yet, they can tell me it's in my head, that I am faking, or lying, or looking for attention.  Which is exactly what I do.  Instead of working to build my business, it is way more fun to sit around in jammie pants, gaining weight no matter what I avoid.  It's totally fab to get to "come out" to people at work, people at my kids' school. I love telling my kids I can't do something, can't open my pills, can't hold a piece of paper, can't get a bear hug, may one day need help eating. I'm just a drama queen that needs attention.

I will tell you----I used to be drawn to drama. I enjoyed the theatrics.  Let me tell you---sometimes it takes real drama to show you how stupid it all is, how much I don't love drama.  Sometimes it takes something shitty as poor health to make you really realize what is important.

Do I want my life back? No.  Do I want to be able to participate in a new life? Hell, yes I do. Which is why I will continue to pay pay pay for all the meds my doctor tells me to take.  My new doc that listens to me, treats me like a normal human with a real disease.  And I will get better.  it may take a while, and I may not get back to the energy level I once had, but that's okay.  I had too much energy, anyway.  And I wasted it running myself into the ground.  At this point, I would settle for 50%.

As far as my old doc, Dr. W goes, I sent him a note.  Now, before you think I got all scathing and angry and f-bomb-y, I must tell you I have had time to settle down.  That, and I was limited to 500 words, so they had to count. I wrote and rewrote and rewrote....

Dear. Dr. W-you stupid simplistic insurance lackey-I actually have a real disease. I went to a doctor that wasn't a fuckwit, and I'm being treated for a real thing-Lyme disease. Heard of it? So the next time you condescendingly tell a patient to "get that depression under control to make your pain go away", please know that I will find out.  I will find out, and hunt you down.  Then I will take a rusty set of hedge trimmers to help you alleviate some of that congestion that causes your voice to sound like Ben Stein, but with less personality.  Then I will take your stethoscope and ran it up your ass so far, you will be able to hear yourself digest.  Kisses, Aimee  =Bad. 544 characters.

I had some editing to do.

"Dr. W-after our last meeting, I left with many questions, and little hope, except for "addressing my depression", which should cause my pain to go away. I got a 2nd opinion, and wanted you to know I have Lyme Disease and am in treatment. For the future, please look into all options, before blaming depression. Thank you."

Okay, I have mellowed a bit.  But truly, I was hoping that, maybe, just maybe, he would think about this email once more over the course of his practice.  And maybe it just might cause him to look a little deeper, just once.  And because of that extra care, someone will get the care they need to get better.

Am I awesome, or what?

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