Lyme Western Blot

I will expand on this post in the future, but I just want to ask: If there are so many issues with the ELISA, why hasn’t there been a push by anyone in the CDC to go right to the western Blot?  After all, it does provide bands that are specific only for Borrelia.  Surely ID docs would agree that shows more of what is going on than simply one’s immune response to Borrelia.  The IDSA (and Babs especially if I am remembering right) tries to convince people that you will get far too many false positives this way.  Isn’t that much better than way too many false negatives?  And how can you have much of a false positive with reporting the bands specific for Borrelia? (Not the CDC’s surveillance only bands).  

I think this is mostly what the better LLMDs do–to confirm a diagnosis, not to GET a diagnosis.  And they are said to be so awful for doing this, even sending it to the better labs that use better tests.  Really?  Since when don’t ID docs want the most exact, specific result for a bacteria?  Maybe they are paranoid about certain labs just scamming people for money and not really being better.  Being paranoid isn’t a really good thing for patients.  Maybe they should check them out factually instead of assuming whatever crap they read about these labs is true.  

But, again, I’ll expand on that.  I just see no reason the CDC hasn’t done this a long time ago.  They have blood on their hands, definitely.  I just wonder how long until they realize they will, one day, be nailed for it.   Might not be now, might not be for years, but the sooner they let it go on, the worse it will be.  

If they want anyone at all to listen to them on Zika, Ebola, whatever–they need to get on this and make it right. 
–Loon Out 

One Too Many

I love and respect my friends and family, but I’ve seen one too many “funny” antivax … things. 

First:  For those proven to be hurt by vaccines…it’s not funny.  These are people I know doing this, and I know they’re not the type to go to the cancer ward and make fun of the kids who lost their hair…yet they post these “funny” things.  But maybe they’re just not thinking.  

Secondly, I’m not alone in my feelings outlined below.  
Being so adamant that the CDC has absolutely nothing to hide on vaccines is way too naive. Putting antivax labels on those who want more accountability, safety checks and research on vaccines is doubly so. Being careful is bad now? Where else do we just say..nah…I’m gonna trust the government has my back…without any real transparency or checks and balances? Are they really so trustworthy? 

Don’t you want to know what causes the worst vaccine reactions? You want to just keep hoping your luck isn’t going to run out? Where’s the science in that? 

I’ve seen so many similarities in Lyme and vaccine science. Bad research, corruption, flat out lying by those in positions of trust, utter character destroying for anyone not spouting the party line.  

Making normal people hate other normal people just for wanting information, accountability, and safety in their health choices.  

Tell me that last one is not the craziest. You’re really going to think I’m terrible for demanding a safe product…especially when there are already places that demand compliance? And these are sometimes people who hate being forced to buy insurance. Why don’t you want the safest possible product if it is so necessary that you believe people should be forced to get it?  

I want way more info on a vaccine before anyone forces me to get one. If you don’t, then maybe you dont realize how little we, as a country, as a world, know about disease, bacteria, and our immune systems. 

 It’s less scary to trust the CDC and doctors. It’s also less scary to hide under your covers. But safer? Not by a long shot. If you want to trust and hide–fine. Just stop bad mouthing those like me who would rather have answers and proof instead of happy pretty lies.  

–Loon Out

Chronic Lyme Cult Awareness and Other Idjits 

You really have to wonder if these people are in real life or what.  Have they just not read the science?  Are they paid to lie? Do they just like to troll people?  Deeply in denial?  Maybe all of the above.  

When you read comments like the one below by CLCA, it’s pretty obvious they have serious issues regarding reality.  Or they just want to convince people that they have a reality that is actually, well, real.  

CLCA quote: “The CDC-recommended guidelines are not outdated. The evidence against long term antibiotics treatment has only grown stronger in the last decade. The National Guidelines Clearinghouse does not endorse guidelines and there is no requirement that the guidelines be scientific, only that they meet certain formal requirements. A group of quacks called ILADS has submitted pseudoscientific guidelines to that web site, but they admit right in the guidelines that each recommendation is based on “very low-quality evidence”. Doctors should be wary of any treatment recommendation based on “very low-quality evidence”.” 

Citation needed infinity. 

One thing I think CLCA doesn’t understand is that there are many poor quality studies in Lyme disease.  This is caused by the complexity of the organism AND the fact that so many of the original researchers did not do a good job on the research.  The IDSA out-of-date guidelines based over half of their recommendations on expert opinion (level III evidence).  Which is poor quality evidence.  But they don’t like to really talk about that.  ILADS spells out the fact instead of trying to hide it.  The IDSA probably doesn’t want people to know it, though, because they are the ones who did a lot of the crappy research.  The IDSA doesn’t only do this with the Lyme guidelines though.  From 30 published guidelines by the IDSA, it was found that more than half of the recommendations were based soley on expert opinion.  

But facts and stuff don’t fit the “crazoversy.” 

You can call ILADS a group of quacks, and if a person reading that knows absolutely nothing about ILADS or who they are, they may actually believe it.  However, when you go and fact-check these statements, you find what utter nonesense they are.  I call these types of trolls/paid disinformationers idjits because it’s faster to write, but basically it is anyone who has either no clue about the science of Lyme, or they are liars.  I have no idea of their motives because people like that really baffle me.  It could be any of the reasons above or a plethora of other things.  One never knows.  

All of them, to me, are quite creepy.  
I’m not just saying that as an insult.  Think about it.  In real, not internet, life –how absolutley strange would it be for someone to have such an issue with people who have a certain illness that they create a persona and argue about it, all while either being completely obtuse about it (on purpose) or being completely uneducated about the facts of this thing they are so obsessed with?  

Creepy.  

One can take almost anything idjits say and show exactly and positively how factually wrong it is.  They either are in such denial or ignorant or are lying in the first place — so what’s the point?  Anyone who knows the least bit about Lyme and how the organism works, has been following the latest research, can tell how totally ridiculous they sound.  

Those who actually know better and are lying (for whatever reason) seem to be behind a bit though.  There is a point where even the CDC, IDSA, and other experts who have been denying persistence have to jump on board the reality train because otherwise they will miss out.  They know they can’t deny or hide much longer–the science has caught up in a way they can’t confuse the gullible anymore.  

This is one reason is why I believe Paul Auwaerter was involved in the study that shows how persistence of borrelia works in mice and how to treat it.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/   We know he didn’t jump on that research vein because he believed persistence wasn’t a thing.  Can you imagine someone TRULY 100% believing there was no persistence in Borrelia then deciding to join a research team to study not only persistence but HOW TO TREAT IT?  Come on.  

He knew persistence was real, and he knew it for years.  But he couldn’t admit it.  Now he can AND try to save face at the same time–by being one of the people to “discover” it.  (Even though LLMDs have known for years combo and pulse therapy work).   

Unlike the way Bobby uses the phrase in Supernatural, “idjits” is not a term of endearment on my part regarding these people.   It’s yet another way I laugh at them. 

There is a part of me that feels sorry for their kids or other loved ones who might be caught in the karma (or ignorance) crossfire that will be coming.   Hopefully, any innocents will take them with the grain of salt the rest of us do. 
                                                                                             

–Loon Out 

Why Lyme Patient Advocates Should Absolutely Make Lyme Policy 

Here is a link to the article.  Don’t hurt yourself rolling your eyes if you read it.  I think I strained something.  

The role of patient advocates in Lyme disease policy should be limited

According to the latest set of idjits, Lyme patient advocates should not make Lyme policy because 

1. We read too much crap on the internets. “While patient research can often be helpful to both patients and informative for health providers, it becomes problematic when there is a preponderance of non-scientific or non-peer reviewed information online.”  

Apparently these “writers” do not realize that it’s not too hard to find the research journals and the research articles and read those.  Maybe not everyone can understand it, but you get pretty good at understanding how to correctly research a subject when death is on the line.  

Admit it.  You read that in Vizzini’s voice didn’t you?  

As you can tell by their comment section (and by the fact they shut it down), these days Lyme patient advocates and what they write on the internet outnumber the crud articles the half-truth-writers put out.  

2. We’re dumb.   “Furthermore, the general public is not as adept as experts at assessing risks of treatment or critically assessing scientific research.”

Talk about the least self-aware statement I have seen in a while.  

3. And by patient advocates they mean patients.  “However, the voices of patients must not trump evidence-based science in the development of health policy.”  

The people trying to separate patient from expert become pretty obvious after reading as many Lyme articles as I have.  I become very suspicious of those who do it because there is really only one reason TO do that: Make it seem like they can never be one and the same.  

In my experience, (and I am pretty sure I know more Lyme patients than the writers do), the average Lyme patient has been educated by some of the top experts in the field.  Some of the experts have had Lyme themselves. So not only do we have the input of someone who knows the disease personally, they also have been learning about the disease from people like: 

 Dr. Willy Burgdorfer who believed in persistence and that the current state of patient care for Lyme disease was crap.  Oh.  He also discovered that Lyme was caused by Borrelia … 

Dr. Eva Sapi: Lyme patient and researcher who has made some pretty awesome breakthroughs over the years.

The late Dr. Burton Waisbren, a founding member of the IDSA.  Yes, that says IDSA. You should read what he thought about the IDSA guidelines on Lyme.  Wee-Ow.   Click Here To Read His Critique 

So if they don’t think patient advocates should make policy–Who else should do it?

Certainly not the people who have been doing it the last 30 years.  We wouldn’t even be in this situation if they hadn’t screwed up the science and, on top of it, lied about it.  
Which set of people would you trust are more careful when writing policy so it is in the best interest of the public?  The people with conflicts of interest, those who have anything at all to gain or lose monetarily?  Those who have lied about what the science, sometimes their OWN science, has shown?  Those who try to hide or lie about other research?  

I know who I would trust: Those who will be directly affected by the new policy, those who were directly affected by the old policy, and the experts who have seen and felt all aspects of the disease.  This group is exactly who I would trust.  And those people are Lyme patient advocates. 

Maybe these writers were “taught the crazoversy.”  Maybe they just didn’t do enough research.  They should know better.

They should be more careful about something this important.  

Writers like these two don’t even realize they have been taken in by the line, so much so they can sleep at night thinking they did the right thing.  I have seen tougher people brought down by smaller mistakes.  

I hope McPhail and Shelley can live with themselves once they realize what they  have become a part of:  The perpetual disparaging, lying, and bullying towards those who are living breathing examples of the utter failure of the IDSA Guidelines.  They’re pissed they screwed up and so they shoot the messenger, using you as their bullets. 

Moral of the story: Stop being a tool.  

Sorry.  You know I just couldn’t resist that. 

–Loon Out