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  

Education Available from Winona Lyme

I have been given many great DVDs by Minnesota Lyme Association.  They are mostly from 2011, but they would be great to show at local meetings, especially for those new to Lyme/TBDs and those in the healthcare field.  

I also bought a community copy of both Under Our Skin movies, so I am able to show these to groups when the interest is there. 

The ones from MLA: 

The Cellular And Inflammatory Response to Lyme Antigens by Sirid Kellermann, PhD 

MLA Social Security Disability

Lessons in Lyme — An Educational Series on Lyme Disease by Elizabeth Maloney, MD (2011) 

Preventing Lyme Disease: Need for prevention, disease transmission, protection strategies, responding to tick bites. 

What Everyone Should Know About Lyme Disease: Statistics, Borrelia burgdorferi, Co-infections, Ticks, Disease Presentation, Diagnostics and Treatment

Borrelia Burgdorferi:  A Brilliant Bacterium:  Family of Bacteria, Zoonotic Organism, Imune Evasion, Interactions with Humans, Open Research Questions 

Dr. Ed Breitschwerdt Professor of Medicine and Infectious Disease at NC State University, College of Vet Medicine (I believe this one is concerning Bartonella, but I haven’t gotten a chance to wactch it, just going to watch it today). 

So if anyone wants to come to a meeting on Sunday and just watch one of these DVDs, let me know.  I can’t loan them out, but anyone can come ever and watch them.  🙂  I have an open meeting every Sunday at noon for about an hour for anyone who wants to show up.  I just need advance notice, about 24 hours by email, so I can prepare and let y ou know where the meeting will be.  I also don’t like to give out my address online, and if the meetings are bigger, we will need to go to a bigger place that week).  
You can find my email on my “about” page– but I’ll put it here too.  No spaces, and replace (at) with @I just have to write it like this to avoid issues. 

WinonaLyme (at) yahoo.com 

Kids who are well behaved enough to sit and listen are welcome.  They should learn about this also 🙂 
–Loon Out 

The Sound of Silence 

It always still amazes me.  How little Lyme disease means to so many.  I understand one could probably tune it out somewhat until it reaches their family.  But the amazing amount of apathy I have experienced myself and heard about from others is disheartening.  I’m talking, obviously, about the late-stage or chronic type of Lyme or tick-borne disease.  Not the type where people will get a few symptoms, and then they are fine. (AKA the lucky few). 

Let’s say someone found out they have cancer, MS, Parkinson’s, ALS, and they post this on Facebook.  All family and friends will post encouraging words, ask how they are doing, maybe even set up a fundraiser.  I could count on one hand the times I heard this happening for someone who posted that they or their child has Lyme disease/tick-borne disease. 

Maybe they don’t get the seriousness of the disease the way they do the others.  That’s fine.  I don’t blame anyone.  I don’t know that I wouldn’t do the same.  

But being on the other end of that and seeing it happen over and over again, you start to wonder what other disease does this happen with?  Really?  Do people just think they got a bug bite?  Or are they just this heartless? 

With recent celebrities coming out and telling their stories about dealing with Lyme disease, I think more people understand what it can entail.  The more it is spreading, more know someone with it.  But as far as understanding what one goes through … I still think that is lacking IMMENSELY.  

I’ll try to sum it up in a few points.  

Usually they have had to go through many doctors and tests ruling out almost everything else before getting a Lyme diagnosis.  If they seem happy about it, it is just because they finally know what the heck is going on.  It’s not an easy thing to figure out because it imitates so many other diseases. 

Many times they have been accused by someone, either a doctor, family member, friend, or even themselves, of being lazy or weak.  Out-and-out unconditional, no-question or sideways glances support like those with the other diseases get?  Probably haven’t had that.  

They are probably somewhat overwhelmed, learning about an infection that is immensely complex in the way it behaves, and on top of that the shock at hearing about how hard it can be to get proper treatment, and when they realize they may never get better and could die from this … It is a lot to take in to say the least.  When they find their friends and family not only not offering even just words of support but down-right ignoring them … It can break the toughest person.

Sometimes they have had a difficult time even saying they have Lyme disease because there can be a stigma attached to it.  I think that is going away quite a bit …but not enough.  There are still so-called experts and websites (like Heathline) that have articles that call Lyme patients outright crazy and quote statistics saying only “wealthier” people get Lyme, or have names like “No, You Do Not Have Chronic Lyme Disease.”  Heck, there have been a few “studies” in research publications stating Lyme patients/advocates are a danger to public health.  
  
Know what’s funny about this one?  Paul A has been involved with research on what types of medications are best for persistent Lyme as well as if pulse dosing is helpful.  This guy.  One who has said over and over again on the record that Lyme cannot be persistent.  The guy who calls this an unorthodox treatment and insists those saying such a thing are a danger to public health should be made to wear an “I’m an A-hole and I was WRONG” T-shirt in public for the rest of his life.  After all, if just talking about it is a public health threat, what the heck would his crime be, actually researching it?  

Quote from said research “While various drug combinations showed improved activity against stationary phase B. burgdorferi persisters, daptomycin combinations had the best activity among drug combinations against persisters.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/ 
Now, I’m not trying to shame anyone or bring on a pity party.  Lyme patients only want understanding, equal treatment. They rarely get help in the medical establishment so it can be especially tough.  When nurses roll their eyes and doctors sigh at them, these people who are supposed to help them, it can feel like being a complete outcast and entirely hopeless.  A few kind words from a friend or neighbor can mean, literally, the difference between life and death. 

Though accurate stats on Lyme (because of such under diagnosis) are hard to find, it is well known that suicide is the leading killer of Lyme patients.  It’s not because there is fundamentally something wrong with these patients in the first place; it is because it is an infection that does work its way into the brain and can do damage there that makes people act in ways they normally wouldn’t when the above-described lack of support and media bullying piles on top of the pain and multiple other ways Lyme destroys your body … finally gets to be too much.  

So for 2016 I hope I see and hear more stories about how family and friends are encouraging people, responding to their stories, and coming to the aid of Lyme patients the same way they would for any other disease.  

The sound of silence –for too many already– has become permanent. 

–Loon Out 

Why Being Wrong Can Make You Right 

We all know someone who just has to be right and can’t admit being wrong; those who would argue that 1+1 does not equal 2, no matter what proof there is.  It gets to the point where these people are just irrational.  
Like the doctors who don’t know much about Lyme disease but just know it is not persistent.  They have not read the research that proves persistence and they don’t want to.  But they’ll argue with the research just the same.  

How does this make sense at all?  Someone disagrees with what you are saying but won’t even read/listen to what it is you are saying.  

The best I can come up with is that they simply are too attached to being right–like it somehow means they are stupid about everything; not that they just don’t know this one (out of a million) facts.  And even reading something contrary to what they believe will crack their already fragile ego.  

I feel lucky that I have been in a field of work where you have to accept in school, long before you start working, that you will be wrong, and you will be told how and why you are wrong.  A lot.  Usually, it is in a nice way, and that helps.  But it has taught me how to be fine with being wrong.  

It may be partly that I know I can’t possibly know everything, and I’m fine with that.  It would be super-human to have that ability.  But apparently some people just can’t accept that of themselves.  

I have also been an easy-going person most of my life.  It’s just a part of my personality.  This also makes being wrong easier for me.  After I got Lyme disease and couldn’t think well for, oh a few years, I got used to being wrong even more.  Luckily, those in my life usually understood, and I didn’t connect my sense of self with my lacking brain powers.  I also usually didn’t insist I was right on anything since I knew better, which also made it easier to admit I was wrong.  

Lyme patients need to deal with people like this all the time.  So how do we do it? We have a few options: 

1. Walk away. You probably won’t change their minds anyway; it goes deeper than them believing a fact about Lyme. 

2. Soften the blow. Note that a lot of people don’t know much about Lyme disease–one can’t possibly be expected to know everything about every disease.  Doctors may be more opposed to this line of thinking, but it’s true; otherwise, there wouldn’t be specialists. 

3. Ask them for their view or why they believe what they believe.  A lot of times they cannot back up their beliefs, but if they do give an answer, don’t try to argue with them.  Sometimes you can find a point you DO agree on (example: the tick species) and then expand on that, acting like they knew this as well, but you were just the first person who said it in the conversation. You are now on the same side and they are more likely to listen.  

4. Give them time.  They may go look up some facts on their own but do not want to admit they are wrong at the moment right to your face.  Then if you talk about it later at some point, they may be more open to ideas since they know a bit more what they are talking about.  When one knows more about a subject, they are more open to talk about it rather than just shut a person down outright. 

Even though Lyme disease has brought me some really sucky “presents,” it has also brought me some good ones.  I double or triple think things, I make more lists, am more organized, and I have learned to be wrong and how to be okay with it.  

This doesn’t mean that I won’t every once in a while break out the line “I’ve heard it both ways” (from Psych).  Sometimes I may even say a word wrong on purpose just to get a chance to say it.  Next time you encounter one of these especially irritating always-have-to-be-right people, you may want to try doing this.  Maybe even in every sentence.  It’s truly addicting.  

                                                                                 

— Loon Out 

Hello To The International Folks! 

I don’t get a lot of specific information on who visits my blog, but it does tell me from which country people visit me.  

So I thought I would just say a special thank you for stopping in!  

Some of the most recent places: 

UK (My son’s #1 place he wants to visit) Welcome! 

France (I can’t find any brioche, my favorite bread ever, in the area! Can you believe that? And I’m really bad at making it myself). Welcome!  Sorry.  I can’t speak French.  At all.  I can’t even do a good fake accent.  So I won’t put you through it. 🙂 

Ireland (think my name is Irish much?– Shannon Devine).  Welcome!  

Other countries I have noticed: 

Poland–Dzień Dobry!  (My dearly departed grandmother taught me that one along with the national anthem and a few Polish Christmas Carols 🙂 

Brazil:  I only know a few phrases that I needed to use when I used to work as a telephone operator … Portuguese is such a beautiful language!  

A few here and there from Japan: Konnichiwa! My daughter is living in your awesome country for the (college) school year, and you are taking great care of her so far!  🙂 She LOVES it.  Except the big bees.  LoL.  

Spain— I think I have seen some from there too!  Gorgeous country! 

I have always lived in the US, right in the area I am in now.  My ancestors are from many different countries, so I am what some people call a “mutt.”  I am a little bit of each of these: French, “Bohemian,” Polish, German, Norwegian, Irish,  and Italian.  

Though I am happy to see so many interesting places show up here–it is also quite sad that Lyme and TBDs are this widespread.   

If anyone wants to leave a comment, please don’t feel shy!  I love to hear from other places, how things are over there as far as Lyme and tick-borne diseases.  

I have noticed a lot of people visit my post about the bartonella rash.  Is this something that is happening more and more in other countries or is there some other reason this is a popular post? I don’t know unless you all tell me.  🙂 

If you want to know about a specific subject and I can help–let me know that too.  

I wish there was an easier way to comment here, but I think you need to sign up.  I do also have an email address that I put on my “about” page.  I check that email at least once a day.  I don’t trust it 100% because there have been some missing messages at times, but you can try me there, of course.  

You can also visit me on Facebook under Winona Lyme.  I haven’t been updating that page as much, but if more people say hello over there, I will. 🙂 

Please take care and know that I really do appreciate every single person who comes to read my posts.  Most of them were written to get out some of my frustration in a somewhat healthy way, but if they help or entertain–all the better!  

Though it is sad so many are affected by these diseases–it does have a good side: We are such a large group of people, you will  never be alone.  

Big huge hugs all around the world! 

–Loon Out 

Anti-Vax or Pro-Information? 

Have you noticed the negative connotation given those who question the science of vaccines?  ANTI vax.  I am not going to claim knowing the reason behind anyone’s vaccine stance; I just am giving my own thoughts here.  

I started questioning the normal recommendations for vaccines after I found out that I really needn’t have had my daughter get the live polio vaccine; the other one was available and much safer. It was just more expensive.  I certainly would have paid had I known.  The problem– I was never told.  Now, this was before the 2000s so maybe things have changed.  I think they rarely give the live one, but I could be wrong about that.

The point is–information was withheld.  BI (before Internet) rarely did anyone question their doctors.  Doctors and other healthcare providers may hate that patients go on the Internet and read about illnesses (and I understand their issues with it), but for the most part, the more information the better.  

Over the last 15 or so years, there have been more and more relevations about the relationship between some physicians and pharmaceutical companies, getting kick-backs for prescribing certain drugs, the way research is many times not published to hide potential damaging findings, the collusion between researchers and their funding counterparts to develop and produce a specific result in said research … And that’s for starters. 

Some of the hardest information to find, however, is the research on vaccines, i.e., how, or even if, they work, basic safety checks, any research expanding on new findings regarding the immune system. 

While it is true one can count on others shoving money in faces of those who promise a new vaccine, I am having a hard time finding very basic studies on safety.  (And if they are out there–please share them with me).  

Case in point:  While researching the humoral immunity function in Borrelia burgdorferi (Lyme disease), the NIH funded study found that not only did Bb mess up producing long-lived immunity to Bb, but if the influenza vaccine was administered at the same time of infection, the vaccine was basically ineffective. 

Here is the author’s summary 

Infections with the Lyme Disease agent, Borrelia burgdorferi, often fail to generate long-term protective immunity. We show here that this is because the immune system of the Borrelia-infected host generates only short-lived, structurally abnormal and non-functional germinal centers. These germinal centers fail to induce memory B cells and long-lived antibody-producing plasma cells, leaving the host susceptible to reinfection with Bb. This inability to induce long-term immunity was not due to the nature of Borrelia antigens, as even T-dependent antigens of Borrelia were unable to induce such responses. Moreover, influenza vaccine antigens, when applied during Borrelia-infection, failed to induce strong antibody responses and immune-protection from influenza challenge. This data illustrate the potent, if temporal, immune suppression induced by Borrelia-infection. Collectively, the data reveal a new mechanism by which B. burgdorferi subverts the adaptive immune response. 

Well isn’t that interesting?  of course it is.  Which leads to the question: What other sort of weird things are going on with our immune system and any vaccine? What if you have (fill in disease or illness name) and you get a certain vaccine.  Is it going to work? Is it safe?  Will there be interactions?

I know it is probably not ethical to take, say, a bunch of people with diabetes and inject them with a certain vaccine to see what sort of effects it has on the immune system.  But, at the very least, those who sneer at pro-information types need to admit there is a bunch we don’t know about the human body and how it interacts with substances, including vaccines. 

It my opinion, those who take a hard-line stance in this debate on either side are not seeing the reality.  And that is

Vaccines are here to stay for now.  

If you don’t like vaccines, many people are going to think you are crazy. 

If you DO like vaccines, some people are going to think you are stupid. 

And last, but not least, it would be a wonderful idea if anyone who believes in forcing every single person in the US to get vaccines is forced to spend a day with anyone who has been proven to be hurt by one; those who reject any and all immunizations because they read something by someone on the internet once need to spend a day with someone who was hurt by not getting a vaccine.  
— Loon Out 

IRrational Wiki on Lyme Disease 

After studying genetics and the immune system the past 2 weeks, reading the sort of garbage that Rational Wiki dumped on a page about Lyme disease was such a shock to the system that I giggled and laughed for about 10 minutes straight.  

Are they serious?  *snicker*  If nothing else I can pull that memory out on a bad day, and it will cheer me up.  

Anyone who uses the word “woo” in a supposed serious article is just not going to be taken seriously.  

Anyone who thinks Quackwatch is a reference … hee hee … Key. Ripes.  I can’t even.  

I’ll be back later this weekend to post some actual FACTS that these RATional Wikiers either don’t know or don’t care to know or just lied about.  (I can’t know their reasons). 

Let’s nut-shell this: 

           Rational Wiki’s Lyme disease entry is one big Straw Man. And an ugly one at that.  
                                                            

–Loon Out 

Don’t Make Me Drag You …

  
Pop on over to this link, sign this awesome letter to John Caudwell supporting Dr. Alan MacDonald’s research on Borrelia (Lyme) and Alzheimer’s.  

Click Here For The Awesome Letter

The only people with access to your info is our committe.  You can trust us with your email–Promise.  It won’t be listed anywhere public.  You can even be anonymous … but then I won’t know who to thank.  😉  

And if you do, once again: 
  

–Loon Out 

The Fellowship of the Squiggle 

Ok I said I wouldn’t use it in public, but I just couldn’t resist on my own blog.  Most people get a joke while still understanding I’m serious about this committee.  

Recently I was asked to join a committee to work on promoting Dr. Alan MacDonald’s work for the purposes of not only funds, as he does not patent anything and his work is open access, but to also educate others on these truly amazing findings on Borrelia and Alzheimer’s disease.  

So our serious title is – Paul Duray Fellowship Ad hoc Committee supporting Dr. Alan MacDonald’s Research

You see why I needed to shorten that for my own personal, informal usage?  

It’s just not that easy to pronounce “PDFAHCSDAMR” either.  

Here is the website where you can donate.  Not sure if there is a minimum, but seriously folks, any little bit helps.  Dr. MacDonald follows the science, not what other people think the science should be.  So he depends on donations.  

https://www.gofundme.com/z3v2a2k   

A big virtual Loon hug — that’s me, running at you with open hug-you wings–


 to all who either read or spread the word or donate, or all three!  
— Loon Out 

Local Meetings

If anyone would like to come to the Lyme/Tick-Borne Disease support group, please email me before Sunday at winonalyme@yahoo.com.  Or you can contact me on Facebook.  I am also listed under Winona Lyme there.  There have been no emails so far today so there is not one today, but my letter was just in today’s paper so I do expect more next week.  

I will also be posting some additional helpful links on this blog today too.  Don’t be shy emailing me.  🙂  I do work full-time and homeschool, but I do get back to everyone!  

Please note I do not promote any specific treatment, sell anything, etc.  I have been in touch with Minnesota Lyme Association over the years, but I am not a chapter of them.  I do my own thing.  I have some educational DVDs from them that I can show during some meetings if there are enough health professionals (or patients) interested, but I cannot offer any sort of credit of course for something like that.  

The location for the meetings may change depending on how many are coming that week, but I should be able to let anyone know by Friday.  Most meetings will probably (for now) take place on my apartment, and I don’t want to advertise that address so I will need to email it to those coming to the meetings.  

Hope to see you soon!
–Loon Out