So THAT happened …

I have just tons I want to write but am just not getting a chance to. Maybe I’ll even be able to write WHY soon here.

I am still waiting to edit my previous story enough to my liking before I really post links to it anywhere. I am a bit of a perfectionist sometimes, although I have to let go at some point because otherwise I would never post ANYTHING … I’d just keep editing, a-hand editing, a-hand editing.

That’s a very poorly done Pee Wee Herman reference by the way.

Unfortunately, I keep finding more and more idiotic statements in blogs about Lyme. Some are quite a few years old, so if I do another post scientificating the science blogger (does an octopus have legs?), I will keep it to within a year. Or 2 if it gets me really perturbed.

But none of that now. Instead, I am going to tell you a quick story that can even NOW still make me so mad I almost want to want to strangle a fairy.

Before I understood I had narcolepsy and what it did to my brain–not only during regular “working” hours but also to my waking-up self. Long story short: I need no less than 2 separate alarms going off at about 120 dB each while simultaneously shaking my bed like an earthquake. This was back when my son was in 3rd grade. He was late a couple of times because of my narcolespy brain, and I was called down to the principal’s office. Not like when I was in school, but in a grown-up way via letter. Kinda more scary even.

I actually knew the principal of the school. She was a sort of ok lady, but I remember her being a bit …I’m still not sure the word for it. She actually retired the following year or 2 as she was getting up there in age.

When I explained why my son was late a few times here and there that year (they have a limit), the conversation sort of went like this:

*small talk*
Scary Principal Lady: Ok so let me make sure I have this right: Oliver has been late because you can’t get out of bed in the morning.” This was said in a Minnesota nice type of way. Nice but condescending at the same time.

Me: Not exactly. (I explained again that I had Lyme disease recently diagnosed, that I had it a long time, and sometimes my brain would not hear my alarm–and my doctor and I didn’t know why yet.

SPL: “Well why don’t you have Oliver set an alarm clock next to his bed?”

Me: “Yes, we did try that; however, he doesn’t wake up either. He is a sound sleeper like a lot of kids are at his age.”

SPL: “Hmmm ….So why don’t you have your neighbor come over and make sure you are up every morning?”

Me: *blink* *blink*

Now even forgetting the fact that this was not the 1950s, and the neighbors moved in a few months prior … but why in the world would she think I would hear a knock at the door (or ring of a doorbell) when I can’t hear a very loud alarm clock blaring right next to my head?

Me –sheepishly:  “They just moved in recently, and I don’t know them very well yet. I probably wouldn’t hear them knock anyway.”

SPL: “Mmmm hmmmm …” Long look at me. “Well what if your smoke alarm went off?? Would you be able to hear that? Are you sure you are capable of raising your kids? PLUS …. ”

At this point she kept saying stupid stuff like that while I concentrated on not tearing off one of her bony arms and beating her with it.

I said something about something and left. I said it nicely.

These days, I know quite a bit more what is going on with the Lyme itself, my narcolepsy and all the science of it so if I had to deal with that again, I would do much better and NOT feel as bad as she made me feel for quite a while–even though I knew I didn’t do anything wrong.

But to say that sort of thing to an incredibly ill mother who had absolutely NO history of being a “bad parent,” a teenager who was also sick and previously went to this school, and a son currently attending the school and who had not been in trouble (other than me being sick) is so utterly ridiculous.

Imagine saying that to someone with MS. or someone with brain cancer. Oh the outrage!

Why don’t we get the tiniest bit of acknowledgement of having a complex illness? We don’t want to go around making excuses for ourselves; we just want understanding.

This is why I work hard on educating others.  So people don’t have to hear such ignorant statements.  Heck, I may even save them from getting high-fived in the face with their own bony hand.  Two birds and all … 

–Loon Out

The Blogger and the Bleep

January 22, 2014, Stephen Luntz wrote a blog post titled “The Singer and the Science.” (Here is the link  He seemed to be reviewing the movie “The Punk Singer”–a recent movie about rocker Kathleen Hanna, her career, and her Lyme disease. I must say that I have not been able to see the movie yet so I cannot argue with anything he says about the movie. However, I do know quite a bit about Lyme disease (research and personal experience) and what Luntz wrote in his blog post (I read it).

I also have a bit of experience with blog posts/other articles about Lyme disease as I have read through quite a few of them. Over the years, I have come to be able to tell when the writer is truly concerned about the science and when the writer is not. The “not” writers usually have a reason why they don’t care about the true science. I am still quite puzzled what their motives are. It is something that truly interests me, though.

Of note, Luntz tags his blog post with “antibiotic resistance, Enemies of science, medical science, Other forms of politics.” These would be good tags, but he equates “enemies of science” with a certain type of Lyme advocates that he deems “The crazy wing.” I don’t know how you get in such a wing, and since there is no accompanying link for reference in anything whatsoever factual regarding this, I am going to assume this is an opinion.

However, since Luntz calls himself a science writer other people may think he is an expert on Lyme disease. Not even close.

And you don’t have to take my word for it. I have his own words and actual facts backed up by quality references as my weapons that blow holes the size of his big head in Luntz’s “science.”

The first paragraph is copied for context.

Luntz writes:

“The film starts with a question about why Hanna suddenly stopped touring in 2005. This is kept a mystery for a while, but then you learn that she got sick. However, the nature of the illness is kept a mystery for quite a bit longer – appropriately because for 5 years Hanna’s illness was either dismissed or misdiagnosed by the establishment. Eventually the film reports that Hanna was diagnosed with Chronic Lyme Disease. ”

First, let’s note the statement of “Chronic Lyme Disease.” I am taking his word that this is what they said. We’ll come back to that.

Luntz: “She is shown taking large doses of antibiotics for the disease …”

Luntz does not specify here. Plus, how does he know they were large doses? I can HOPE they stated this in those words in the film. But I don’t know.

Luntz: “The film unquestioningly backs up this diagnosis, quoting statistics about how common Lyme’s disease is.”

I’m not sure how a film can be unquestioning so I am assuming said film does not say anything about what sort of diagnostic testing she went through. This may also lead to another of Luntz’s incorrect assumptions outlined below. He also seems to say that she was diagnosed unquestioningly with Lyme because it is so common, or that is the only thing the film/she backed up her diagnosis with. We’ll expand on that later.

Luntz: “The problem is that the existence of Chronic Lyme’s disease is a scientific battleground, and one that interacts in strange ways with other scientific questions that have become intertwined with political debates and conspiracy theories.”

This statement is so vague, I’m not even totally sure what he’s talking about. WHICH problem? WHAT strange ways? What scientific questions, etc.?

Luntz: “I want to make one thing very clear. I do not for a moment doubt that Hanna is sick, and that this is predominantly a physical disease. Any suggestion that she is malingering is too offensive for words, and I can see not the slightest reason to think the condition is psychosomatic.”

Ah yes. The I-won’t-be-seen-as-beating-up-the-sick-if-I-say-this statement. Sure. He doesn’t believe she is faking, BUT he does believe she:
1. Is too stupid to know she is being duped by the crazy wing.
2. Got better because she had a placebo effect or magic.
3. Wants to send on this message to others in part of a film about her life.


Luntz: “However, the fact that she has a disease does not mean she necessarily has the one with which she has been diagnosed, particularly when you consider that there are doctors who will pretty much diagnose anyone who walks into their office and complains of a toothache with Chronic Lyme’s Disease.”

And double ouch to any doctors/nurses/other providers involved in her care. Again, I did not see the movie, but Luntz did say further above that she was misdiagnosed or dismissed for years. It is possible one gets misdiagnosed without any sort of lab tests, but I am in the medical field enough to know that after 5 years she has had to have a bunch of basic lab tests. Those basic lab tests can rule out many diseases or conditions. But wait, later in the blog post, he does say this:

Luntz:”Hanna really did have Acute Lyme Disease. Moreover, as someone who has actually been tested for a bunch of other things with nothing being found, she is a far more likely case than the people who get swept up in the enthusiasts’ net before anything else can even be assessed. So I’m quite open to the possibility that this is really what she has.”

Ok so apparently he can judge who has Lyme and who doesn’t? But he also said she had been misdiagnosed. So was it acute or not? Before he said she was diagnosed with chronic Lyme. Is it those who were tested for a bunch of other things with nothing being found judged by Luntz to be believable? And how does one go about netting up people? In the US at least you can’t just go around grabbing people and diagnosing them with whatever you want. So he’s open to that. How nice of him. He would probably have to hear each patient’s story, then, to judge them. Instead, he goes by … what exactly? I’m not sure. A strong case of cynicism?

The lack of logic and actual THINKING in his thinking is just so utterly … absent.

Luntz: “I hope so, ”

Wait. What?

Luntz: ” …because the world needs such an amazing person well, and this would offer a relatively straightforward treatment.”

Ok so he hopes she has Lyme (a complex and hard to treat disease) because … wait. What again? I don’t even understand that statement. There is no relatively straightforward treatment after being misdiagnosed so long. Does Luntz not know what acute means? And if she has this movie stating what it states about Lyme, isn’t she one of the more vocal of the crazy wing and not needed by the world?

Luntz: “Since Lyme’s Disease is primarily an American phenomenon I’m not fully up to speed on it, but anything that happens in the US has implications here. There are plenty of sources if you want to follow the debate in more detail, Wikipedia a start, but here is my summary.”

First of all: No, it is not primarily an American phenomenon. According to the International Lyme and Associated Diseases Society, there are 300+ species worldwide and 80+ countries with Lyme. Secondly, if you are having such strong statements about such a thing, writing a blog post about it, don’t you think you should GET up to speed? There may be plenty of sources, but I would like to know if Luntz has actually read any of them.

Luntz: “Acute Lyme Disease is a bacterial infection spread by tics in the northern hemisphere. It has a bunch of nasty symptoms, but can be treated with antibiotics if diagnosed. AFAIK no one questions its existence.”

Note how the sentence says it can be treated with antibiotics if diagnosed. IF DIAGNOSED. That is one part that escapes Luntz. Many, many times it is NOT diagnosed. There, of course, is also the fact (yes scientific fact) that the antibiotics recommended for acute Lyme are not going to help those with “missed” Lyme. 

What happens to those not diagnosed with Lyme when it is in the acute stage? After all … it is also proven (and agreed upon) that not everyone who gets acute Lyme gets a rash or any symptoms that would lead them to seek a doctor’s diagnosis. Thus, many are missed. Simple question isn’t it? Funny how the simple ones go unanswered so much.

There are no studies that the IDSA guidelines are based on to include such patients. 

Luntz: “Chronic Lyme Disease is a different matter. Some doctors believe that inadequate treatment of Lyme Disease when it first hits can lead to a range of fairly non-specific but often serious symptoms including extreme fatigue, joint pain, inability to concentrate and nausea. They prescribe large doses of antibiotics in the belief this will remove the bacterium from the system, and with it the effects.”

This is where the statement “Chronic Lyme Disease” can make things tricky.  Some people think it means the same thing as those who were never treated at all and have advanced/missed/whatever you want to call it Lyme.  When some “medical authorities” use Chronic Lyme, they are usually talking about those who were treated when it was acute and now have symptoms (still or again). I believe that is what the IDSA calls “post-Lyme syndrome.”  I may even partially agree with that.  However, they seem to then lump the missed people or the people that have co-infections (missed diagnoses of other tick-borne infections that many times come from the same tick gut as the Bb/Lyme).  Luntz seems to use this term to lump them all together as well, maybe not even knowing he is putting an entire group of patients somewhere they don’t belong.  At all. 

So what about those who were treated in the acute stage and have symptoms return? This is where part of the debate is. The IDSA guideline writers and some others have stated that they believe all Bb/Lyme bacteria die after acute treatment. They even said they have proven that. They base their treatment guidelines on that.  Of note, however, is that they do base many of their “way important” guidelines on expert opinion and not any studies at all.  (Which actually goes agaisnt their own guidelines for writing guidelines). 

They say: You have Bb/Lyme for the treatment duration, then just even 1 day after that–it magically turns into post-Lyme syndrome (or you are faking). I think anyone with any medical knowledge at all would laugh at that. All doctors (hopefully) should know that different bacteria can actually live longer than a treatment duration. Luntz even mentions things like antibiotic resistance in his blog post. WHAT? Isn’t that crazy talk? We’ll return to this. The next part is just too much fun.

Luntz: “Most medical authorities, including the National Institutes for Health, state that while some patients who have taken antibiotics for acute disease may be left with “post-treatment Lyme Disease syndrome” that additional doses of antibiotics will not help. Moreover, they dispute that the majority of people diagnosed with Chronic Lyme Disease have anything of the sort – in many cases there is no evidence these people were ever infected with the bacteria that causes Lyme Disease, but certain doctors don’t see that as any reason not to diagnose them or prescribe antibiotics.”

I love the term “most medical authorities.” It sounds so … definite. However, when we talk medical authorities, we usually mean those who are behind a desk, never seeing patients with the diseases they claim to be experts on. If you had Lyme, which would you want to treat you: “most Lyme experts”or “most medical authorities.” For one to be a Lyme expert, one would have to work with Lyme patients (and not just in a research setting). Most Lyme experts absolutely do not believe any of what “most medical authorities” in this case think. And they have good reason to.

Let’s knock the NIH (and others) right out of the equation with this:
Delong, A. K., B. Blossom, et al. (2012). “Antibiotic retreatment of Lyme disease in patients with persistent symptoms: A biostatistical review of randomized, placebo-controlled, clinical trials.” Contemp Clin Trials.

If anyone wants to doubt those who actually treat patients with Lyme as believing they are biased and just “trying to make money or achieve status” (and hard thing to do when many cannot accept insurance/insurance will not pay for treatment, and there is a huge campaign to make others think Lyme doctors and patients are cray-cray), you can also check this out.

Embers, M. E., S. W. Barthold, et al. (2012). “Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection.” PLoS ONE 7(1): e29914.

I bet you are noting this last one was published in 2012. It is interesting that this study was started over 10 years before and was supposed to be a companion study to the ones the IDSA guideline writers used to “prove” there is no persistence in Lyme after treatment.

The simple fact there is something shady is going on doesn’t make those smart enough to figure it out conspiracy theorists.

Luntz: “The Chronic Lyme Disease advocates have their moderate and extreeme wing. The extreme wing are clearly dangerous nutters who share the same approach as Global Warming Deniers, 911 “truthers”, people who believe NASA faked the moon landing and such like. Often they are actually the same people.”

Ok now even if you were writing about something I know nothing about, I would want a little bit of back-up of that last sentence. As far as all the stuff before it, I would like to know what constitutes a moderate and what constitutes an extremist. I could maybe agree if we were talking tactics (like getting a message through with fire bombs versus nonviolent measures), but Luntz doesn’t seem to be making that distinction. I’m really at a loss as the science is simply the science. Is it just too deep for him? So unbelievable? For a scientist? The below paragraph seems to answer this a bit.

Luntz:”They are getting in the way of an accurate diagnosis, let alone a cure, for whatever disease or diseases are affecting most of the people they claim are infected.”

Sigh. Another blame the sick people statement. Boring. First of all, I don’t know of anyone going into a doctor’s office and holding a gun to someone’s head stating they MUST diagnose anything. How does he think people do that? Secondly, I am not claiming anyone in particular is infected. These are such strange statements and it again shows the disdain Luntz has for doctors/providers and patients, seemingly believing they can be influenced easily by supposedly crazy pople. 

What, again, about the patients he doesn’t even know he doesn’t know about?  The missed, co-infected.  Even if he is not even considering those, the above studies do, DO, show that Bb itself, alone, even right away, can be a persistent little devil.  If nothing else, there is oodles of research that shows this NOW.  Why don’t the IDSA guideline writers update their guidelines according to the new findings? 

Luntz:” By encouraging the abuse of antibiotics they are also hastening the day when these drugs will be no use against the diseases they still do work against. Their allegations that senior doctors are suppressing the evidence on this condition as part of some weird payola scheme is as offensive as it is absurd.”

I don’t know of anyone in the Lyme community who endorses abusing antibiotics. Why would we want that? We want more streamlined, specific treatment, antibiotics or not. That’s an assumption on his part. I’m not sure who these senior doctors are he talks about. I had an image of some old biddies/male word for biddies with their walkers mulling around … If he is referring to the IDSA guideline panel, he should be careful not to laugh at that before he reads the facts. There are plenty of senior doctors who don’t quite agree with the IDSA’s guidelines on Lyme including one of the founding members of the IDSA, Burton Waisbren, MD, FACP. You can look him up if you think he is just a kook.

As far as WHY, with so much scientific evidence it is untrue, scientists would promote a certain set of guidelines–I don’t begrudge anyone saying their thoughts on that. I can’t believe money would be a strong enough motivator to do what they did, but sometimes the simplest answer is the truth. Money motivates people. I wouldn’t call wanting more money a “weird payola scheme.” Absurd indeed.

An additional thought:  So many mistakes were made with the research as proven by the later Delong study.  On top of that the Embers study findings were released over 10 years later which PROVED persistence.  What if they knew then what we know now from those studies?  The first was shown to be as useful as scrap paper as far as answers about Lyme.  The second proved persistence.  How many years of research have been lost?  Where could we be now in the science? 

Luntz: “Nevertheless, I can’t help but worry about a documentary that will undoubtedly send hundreds, maybe thousands, of people with symptoms overlapping with Hanna’s straight into the arms of the Lyme’s Disease advocates, including the crazy wing.”

Again with the flip flop and the ouchies. Either she deserves to be well OR she is sending oh so many gullible idiots out there a message to run to a stupid doctor (or your local crazy wing sitting there with their nets) who doesn’t even let you sit down, just says LYME! then writes a prescription for large doses of antibiotics and, thus, should be scowled at. Or never get better. Or die. Whatevs.

Luntz: “For all this, I’d really encourage people to see the film. Something that only gets a mention in the last ten minutes should not discredit the entire documentary. The more people who know about Hanna’s politics and courage and wit and tactical nous the better. But as one of the few people in a position to express concerns on this point, I feel it is my duty to raise them, and I do hope that I can discourage anyone from thinking “gee that sounds like me. I must have Lyme’s Disease as well.”

Why not just say: walk out on the last 10 minutes? After all, this Hanna character, the one you think is courageous and witty, was duped and possibly even kidnapped and brainwashed by the crazy wing so she can’t be held responsible for what she put in her own film. After all, it is your DUTY to discourage people from getting the message she partly (I mean the crazy wing) wanted to spread. Because Luntz, little though he admit to knowing, is RIGHT, and all the other people who actually study/prove it like Dr. Eva Sapi, treat it (those who spend 40+ hours a week with actual Lyme patients), and those who live it (Eva Sapi again, Kathleen, me) are wrong.

I strongly advise people to go and read the facts as presented by each “side” in this controversy. Then make up your own mind. Those who have facts and evidence to back it up do not need to hide the other side’s point of view. They don’t need to twist it. And they certainly don’t need to call people names so people are afraid to speak out.

Even those promoting the IDSA guidelines know or say outright that the CDC’s definition should not be used to diagnose or treat Lyme. This is also part of the controversy that shouldn’t even exist because of such a statement. Patients are constantly told if they do not have a positive lab result, they don’t have Lyme. Even the CDC says that is untrue.

Also, way before this disease became a “controversy” at all, it was found that not only could there be no vaccine to combat Bb (Lyme) but its nature was to fool the body, tricking tests and treatment (and apparently bloggers). Check out the “relapsing fever” aspect of Lyme.

All of this doesn’t even include the common co-infections that go along with Lyme. Not one word from Luntz about these.

One final word on “extreme” Lyme advocates. I hate violence. However, if it is extreme to bring about facts that people have a hard time believing for whatever reason, don’t blame the messenger. The fact is, this DISEASE is extreme. Those watching their kids’ childhoods being sucked away because of lies, not facts, bring about extreme feelings. Seeing others in pain or paralyzed and “doctors” calling them liars is extreme. People just trying to get better defending themselves against a blogger who barely looked up any scientific facts and deemed them WRONG or even crazy is extreme. I am the first (but not the only person) who would love if this was all a crazy concoction someone deluded me into thinking.

I can be grateful that Luntz’s blog doesn’t seem to reach too many people (nor does mine of course, and I’m good with that). But there have been others with the same sentiment that have reached many. This is simply my way of coping along with partially thinking they don’t realize what they are doing. And if not for my outlets, I probably would go truly extreme wing cray-cray.

And after saying “wing” so many darned times, I’m getting hungry.

Jerk chicken anyone?

If you would like references in addition to the below, please let me know. I added 2 in the blog post itself above that you can copy and paste into Google or whatever–the ones below, of course, have ADDITIONAL links/references listed to show where they got THEIR data.