PLEASE Trial Questions No One is Asking 

Many of my fellow Lyme bloggers and writers have done such a wonderful job at knocking the POS research also known as the PLEASE Trial, so I haven’t really felt the need to write one of my own.  

There are a few things I do want to point out; Things the mainstream media articles don’t even consider asking. You know, those done by “reporters” who took the bait the authors of the trial fed to them and acted like it was a vacation since they didn’t have to do any work, like even reading the trial study, because it was all wrapped up in a nice little bow by others.  Idjits. 

 If these points were mentioned somewhere out there–I apologize.  I haven’t had time to read them all.  

The first point has more to do with the label of Lyme disease in general.  They have a name for the disease you get when you catch it right away and get treated right away– Lyme disease. They have a name for the disease you (supposedly) get when you were treated but then have symptoms–PTLDS (Post Treatment Lyme Disease Syndrome). But what is the name of what those patients have when they are infected by the Lyme bacteria but don’t get diagnosed or treated for years? Where is even the recognition that the name for this entity is missing (much less any sort of trials or research at all).  Why are they getting lumped in to these other disease names?  I suspect those patients with the most problems regarding treatment are those who have this unnamed entity.  THERE IS NO RESEARCH I have seen regarding these patients, and so-called reporters need to start to understand how much they are missing if they don’t do even a little bit of research into the disease they are writing about. But instead, they just act as if the PLEASE trial ended any possible options in the antibiotic realm for these patients because these few antibiotics and doses “didn’t work” for this particular subset of patients.  

Tell me this makes any sense at all.  

Secondly: I have read quite a few articles about the PLEASE trial by those lazy, idjit reporters.  They all say basically the same thing, that this trial shows long-term antibiotics do not help Lyme patients.  Forgetting how incorrect that is for the moment, why has not one article pointed out that it may just be possible that this trial shows these particular antibiotics may not be the best treatment for Lyme.  And if that is the case, why have they done yet another study about those antibiotics instead of trying others?  

And maybe if they did make that connection or ask that question, they would find there actually is a study that does just that (though it is only about in vitro antibiotics) and one of the authors of that study is Paul Auwaerter (who is constantly quoted by those saying how crazy it is to treat Lyme with more antibiotics, pulse dosing, or combination therapy).  

Wouldn’t a good reporter also wonder why it took over 30 years to even do research like that?  Sort of makes one think there aren’t too many good reporters out there in the mainstream, eh? 

 I have said over and over too many people these days just take whatever websites, videos, articles, TV, radio, tell them, and they don’t do their own research.  If this is you, you are not a reporter, you are just a parrot.  A parrot being used by others to promote an agenda that is hurting patients.  

For those mainstream “reporters”–PLEASE make an effort when researching your next article on Lyme.  

Or don’t be surprised if people start throwing crackers at you. 
— Loon Out 

All Headlines Ever Written are Wrong

Recent articles by Alice Park (@aliceparkny and Dr Ambar) on two websites , Time.com and healthunits.com, jumped to such far conclusions I only thought it fair to do the same by writing the above headline on this blog post.  I used a fact or 2 (their headlines were factually wrong) and exaggerated that to include all headlines ever.  

I could have gone further and said something like “Writers Paid to Put Readers’ Health in Jeopardy.”  But that wouldn’t be QUITE the same thing, though it would be similar enough. 

This problem of absolute lies/untruths/incorrect information being out there once is then exacerbated by these articles still existing.  No corrections that I found, no one really complaining, no one fired.  So apparently this is okay now in journalism.  I’m not sure how major “healthunits” is, but “Time” has been around a while.  Maybe I shouldn’t assume these “writers” are journalists who actually consider ethics to be, you know, a thing. 

Let’s say they did this about, oh I don’t know, fashion.  Big deal, right?  It’s not going to affect anyone’s decisions that could hurt them except maybe to wear something that is out of style.  But when you write factually wrong headlines about a major disease–this can cause people to make wrong decisions about their, or their children’s, health.  So to say that the writers hurt people would be really reaching, of course, and probably libel.  But they definitely COULD hurt people with these headlines; the same can be said for the articles, although they are not AS bad.  I don’t absolve these writers, though, either because they seem to have done very little research on a subject that should be written about very carefully.  

Here are the headlines regarding a trial on long-term antibiotics in Lyme disease. 

Alice Park/Time.com: “Treating ‘Chronic’ Lyme with Antibiotics Doesn’t Work: Study.”

Dr. Ambar/healthunits.com: “Antibiotics Prove Useless in Lyme Disease Treatment.”  

 First of all, the writers of the research paper also exaggerated their findings.  So I’m guessing these “writers” did not do any other homework and took the research paper’s writers at their word.  These days, even I know that’s not the best idea.  Since when do reporters do this?  Aren’t they supposed to verify information?  I know not everyone can understand research studies, but there are other ways to find information, say a counterpoint on the study maybe?  There are quite a few out there. 

Not only did the antibiotics used in this study help some patients, the fact it didn’t help them all should not negate using/trying any other antibiotic (or combination) in any patient ever again.  That’s just stupid science. 

So the above-used headlines go further than even the exaggeration of the paper’s authors.  These headlines suggest that antibiotics given to any Lyme patient (or chronic Lyme patient) won’t work (including giving them antibiotics at the start of disease).  Even the paper’s authors disagree with that statement.  I don’t know anyone who ever stated Lyme should never be treated at the beginning of diagnosis. But the headlines suggest this outright.  

The facts are pretty clear when you have been following this disease as long as many have been.  It obviously is not clear to these writers or headline writers.  I can understand this– to a point.  It is a very complex subject even before you get to all the DNA stuff.  But these type of “absolute” headlines and articles about a subject that is far from being understood completely by anyone (yes, even the researchers) is never a good idea. 

The only options available to the writers/websites to explain these headlines is to either admit they wanted to misrepresent the findings of the research or admit they didn’t understand the research.  

Or they could ignore it all and hope neither one of my proposed headlines comes true.  

–Loon Out 

Winona Is The BEST

Some days I forget things.  Even on my best days.  My brain is not as bad as it used to be, but it still gets me in trouble here and there.

Case in point.  Went shopping, and since I am waiting for a replacement debit card (due to fraud on the other one) I have been writing checks.  No problem, right?? Except today I also forgot my driver’s license.  And the store absolutely needed that.  I did try using the other 2 cards I had with me, a prepaid one with very little left on it, and another similar type card that one needs to load–which I had very little left on as well.  Not enough though. 

So a lady behind me in line offered to pay what was left.  I think it was something like $11.  I said I could just come back … But they said it was ok.  I am pretty sure they just really wanted to get me out of there since I was holding up the line by then.  I was going to offer to get her address and stuff to pay her back, but I was pretty sure she just wanted me gone.  I probably should have asked anyway.  At that point, though, I was also trying to figure out where I left my driver’s license. I was pretty sure I put it back in my purse.  Anyway.  Of course it was on my desk.  

You know how your brain gets all full of mush when you are trying to think fast–that is what my brain does all the time.  So I couldn’t really figure out what to do except to say thank you very much, sorry to hold up the line, and skeedaddle. 

Probably she will never see this, but just in case: 

Nothing like Winona and the amazing people who live here! 
— Loon Out 

Brooklyn Nine-Nine’s  Lyme “Joke.” 

We had some good laughs from Andy Samberg; my son in particular really loved Hot Rod.  But it’s time to say goodbye, unless I see a big apology to the Lyme community.

Now, I’m not one to get all offended about jokes.  I have heard plenty of good Lyme disease jokes.  It is this “joke” in particular.  I wouldn’t even call it a joke.  It made Gina, one of my favorite characters, sound like a real b*itch who thought it would be A-ok to make fun of a family member with a serious disease.  Honestly?  What was supposed to be funny in what she said?  

Gina: ” Here are 5 stories about my cousin Le-Ann and her alleged Lyme disease.”

Bob: “How is that supposed to make me talk?” 

Gina “Not everything’s about you, Bob.  I just needed to vent.  God you’re such a Le-Ann!” 

So first of all, Gina doesn’t believe her cousin has a disease.  Why?  Because it’s so unbelievable?  Where has Gina been the last 4-5 years? The CDC even admitted the probable yearly diagnoses in the US alone is 300,000 or more. And they’re in New York?  Apparently the writers don’t live there since that is one of the most affected states.  

Then it’s funny that Gina associates said disease with people who need attention.  

It’s almost like whoever wrote this joke either picked the EXACT WRONG THINGS TO SAY, statistically improbable, or they personally believe in what Gina said (those diagnosed with Lyme are wrong/self-diagnosed/scammed by Lyme doctors, and/or really don’t have Lyme disease) and they are all attention whores.  And if they do think this, they probably got this idea from some article or blog that they read about Lyme, certainly not because they experienced it themselves. Or maybe the person who wrote it is just an ignorant a**hole who could write the same thing about someone with cancer but just didn’t think it would go over well.

Or maybe it was entirely innocent.  I will accept that if they say it.  And apologize.  

Either way, they have given other “joke writers” the perfect example of what NOT to do. 

Don’t make a joke about a disease that kills if you haven’t experienced it first-hand.  You simply won’t know what is funny or not funny about it. 

Case in point:  The current most common cause of death for Lyme patients is suicide.  And it’s not because they are attention whores.  It’s because they have a disease that no one is taking seriously–not their family, not their friends, not their doctors, not (most of the) research scientists, not society; on top of it, it is painful and exhausting, many times you can lose the ability to think, and thus, without the type of support they deserve–they lose hope.   

So to make a “joke” about this disease that implies the disease is fake and those who have it shouldn’t be taken seriously …man.  If there could be an award for the worst choice made in TV writing, this would be the all-time winner. 

And to make matters even worse, one of their writers on Twitter @djgoor says this: 

 

I suggest everyone send Dan a Lyme story.  After all, he asked for it. 
–Loon Out