Lyme Awareness Month Social Media from May 2014

May is Lyme Awareness Month, which leads to public service announcements here and there, a flurry of blog and social media activity, protests, and specific action campaigns throughout the Lyme world.

Last year was my first year diagnosed during Lyme Awareness month.  I took note of it, but not nearly to the same extent as I did this year.

Chronic Lyme Quality of Life ~ Survey results from LymeDisease.Org and Carnegie Mellon University

LYMEPOLICYWONK: Survey Results Published! Chronic Lyme Patients Suffer Poor Quality of Life and High Rates of Disability and Unemployment
"LDo's most recent survey of over 3,000 patients with chronic Lyme disease was published today by PeerJ. Although the Centers for Disease Control (CDC) recently increased the number of Lyme disease cases in the US from 30,000 to 300,000,

Terrific Video from a Teen Lymie for Lyme Awareness Month

I can't seem to insert the video via youtube, so the link will have to suffice for now.

Her post, under the video:

In 2012 I made this video after having found a piece of paper that brought up some bad memories from my past. I'm posting this for Lyme disease awareness month. Lyme disease has drastically changed my life, and it's important to get the word out there for others who might have been in my situation.

Youtube Video: How do you live with yourself?

(Hypothetical) Open Letter of Apology to Lyme Patients: All doctors should read this

Foreward: This was posted by Twyst of Lyme on facebook (a Lyme page by a Montanan).  The source is unknown--it was sent to someone in the lyme community anonymously.  Hypohtetical or otherwise, the is well written and well-informed piece of writing (or possibly an actual letter from an actual doctor).

This excerpt (it's a long letter but worth reading) is:

The biggest blunder that I apologize for is the fact that we told you that the only tick that could transmit Lyme Disease was the nonexistent Ixodes dammini tick. We told you that only this tick and no other tick could transmit Lyme disease. Never mind that Tick Born Relapsing Fevers were transmitted by dozens of tick species throughout the Northern Hemisphere, and that TBRFs are very closely related to Lyme Disease.

My lyme disease time table

I posted this list on Facebook last week.  These are all approximate timeframes, and this excludes the more detailed and/or contentious details.  But it was interesting to try to recount this sequencially.

Four years ago today, I got a tick bite near Paola Creek. And then I lived happily ever after. Thank goodness Montana doesn't have Lyme disease ; )

Time it took in woods that day to scare a moose: 3 hours

To escape angry moose: 12 seconds (through thick brush)

To pick up tick: probably same 12 seconds

Round and Round we go ~ circular lyme logic

The circular nature of Montana's stance on lyme has come up in this blog before.  But it is worth repeating until it changes.

In a nut shell, we automatically don't count Lyme cases contracted here as Lyme, because we don't have lyme.   We then say all cases were contracted elsewhere. So until someone gets Lyme here, anyone who gets Lyme here doesn't have Lyme (because they got it here). 

This article is a year old, but I still think it is worth correcting.  But I'm restarting treatment today, so we'll see how fast I get to it!

http://m.missoulian.com/news/opinion/mailbag/lyme-disease-not-endemic-to-montana/article_e2fd6136-068d-11e3-8c8a-0019bb2963f4.html?mobile_touch=true

Lyme Highlights from 2013, Part Two: Media ~ Lyme Celebrities in Headlines

http://lymedisease.org/news/touchedbylyme/punk-singer.html

In part one of my highlights post, I offered a few links to studies that made an impression on me this past year.  I also diverged into a relatively brief and lite-weight political rant about the lack of sound science used in policy decisions and the lack of defensible inquiry by CDC, IDSA, and uninformed physicians.  

With that out of the way, here's a bit of what I remember most from the news (mainstream media) this year that had to do with lyme (aside from the revised infection rates, which would be too much to add together here).

Media ~ People and Headlines

Early on in my diagnosis, I came across a lot of celebrity names and lists.  I can't say why that was heartening. I'm certainly not glad any of them had to go through this.  But it was the same as with Bell's palsy....it just added a bit more to the sense of solidarity and hope that I was seeking (and finding) on-line. Lyme and memory are not friends, so I can't make a list of this year's most noted lymies from memory.  But here are a few that stood out for me this year.

Lyme Highlights from 2013, Part One: Research Highlights

I had my lyme diagnosis for most of 2013, though I've had lyme for almost 4 years.  I didn't read a whole lot about lyme before being diagnosed, having focused more on the diseases I was previously diagnosed with.  Filling in the blanks on lyme isn't easy during any year, and I don't have other years to compare to.  So I can't say that this was a crazier year than most for catching up, but I can say it sure feels like a lot has happened in a year.  This is not by any means a recap, but it is a collection of some of the highlights for me as I worked through my first year with the right diagnosis.

Research Highlights

There was more research available from previous years than I expected once I started to dig.  Even browsing lyme sites was fruitful, as lyme advocates are refreshingly science-focused as a group (see lymedisease.org's page regarding evidence based health care for a great example of this).  Many lyme patients appear to me to ask very sound questions and approach the questions sytematically.

I believe this is one of the primary reasons why a review of the pseudoscience they are answered with is such an insulting endeavor.  It is not just the unsupported conclusions IDSA, CDC, and uninformed physicians are drawing (or the nasty way so many choose to present them) that is so insulting, as much as it is the lack of willingness (or ability?) to ask or answer the right questions, or to at least use all available science to answer the alternate questions they are distracting themselves with.

Happy New Year

Bell's Palsy and Lyme Disease ~ "BECAUSE HER FACE WAS PARALYZED"

Most of a smile, most of the time.

Bell's palsy isn't always caused by lyme disease. It can occur separately, but it is a major indicator of lyme, and in my case it was the most blatant symptom early symptom during my acute phase that should have been taken more seriously.

I was bit by a tick while working in the woods in April of 2010.  By May 2010 I had Bell's palsy.  My face regained a fair amount of movement within a few months (and was even loosing some of the droop by the time of the day 11 photo later in this post), but it was life changing all the same.

You know while you're enduring it that there are many aspects of life and people you will never see the same again.  It's hard to see the light at the end of the tunnel.

It's hard to look back on that time.  I was years away from knowing I had lyme, but there's part of me that thinks I always sort of knew.  Or at least strongly wondered, while being told it wasn't a possibility.  I was usually joking when I voiced it, though. Along my almost 4 year illness timeline, the Bell's palsy 'tunnel' was relatively short.  But man, it's a heck of trench....a whole other world....while you're in it.

Bell's palsy day 11 (May 2010)

I was just briefly side tracked on MD Junction, wondering how many people in the Bell's palsy group have also been diagnosed with lyme. And there just-so-happened to be a recent post at the top of the list about lyme and Bell's palsy, so there were people diagnosed with lyme and people wondering about it.

As I scrolled down the other posts in the Bell's palsy group, it brought back a lot of memories, as they were the types of headings I used to sift through every day, from the day my Bell's eye could handle it until I was out of pain and out of bed and not even taping my eye shut at night.  And then continuing to sift through them well beyond that time, with all of the recovery questions you don't know you're going to have.

Send photos to 300,000+ Campaign by December 1

Take a look at all the photos they've got so far.  If you've looked before, it's worth checking back. They are constantly recieving and posting more, and something new strikes me each time I take another look.

The only thing I don't like about the photo I submitted is the word "won" in my sign.  I got my job back, which is what I was trying to convey, because I wanted to show that we can prevail.  But it took a formal federal EEO case to get it back, and trust me, you don't win if you have to go that route.  But I am working and productive, and very surprisingly, I regained my former position.  No one with lyme should ever have to fly themselves to DC to mediate with federal attorneys.  No one else should have to either, but with undiagnosed, untreated lyme disease, barely functioning---inhumane doesn't even begin to cover it.

But, I digress.   Because I have lyme, and we do that.

My husband took mine for me and helped me make the sign make more sense compared to what I started with.  You should join (http://lyme300000.wordpress.com/) or visit their photo feed, or both, and send in a photo, if applicable,via instructions at http://www.flickr.com/groups/lyme300000.

http://www.flickr.com/photos/103718994@N04/10809384626/in/pool-lyme300000

"The “We are the 300,000″ campaign is a movement by the Lyme community to take a stand against being ignored by the CDC and HMOs. Our goal is to obtain effective treatment for all people suffering from Lyme disease."

San Francisco IDSA Protest Rally: My First-Half-of-Furlough Adventure (Part One)

I only managed a couple of posts during my first-half-of-furlough-IDSA-guideline-protest adventure last month.  To recap, we (federal employees, numbering about 600,000) were furloughed on Monday, October 1, when the government shutdown.  My husband works a second job during summer, working for an airline, which gets us temporary flight benefits each year.

Out of work with the ability to fly for free and the need to see  my doctor in Seattle (lyme care is not available where I live), I scheduled an appointment for that Friday, October 4.  I'd been wanting to schedule a face to face visit, but work was way too busy to allow me to make it happen.  I'd also been reading about the then upcoming October 5 rally in San Francisco to protest IDSA's lyme guidelines, which keep thousands of people from being diagnosed and treated (by thousands I mean many, many thousands.....likely hundreds of thousands).  Any reader not fully familiar with lyme politics and "lyme denialism" should look at the resource pages on this blog, but especially Lymedisease.org and the movie Under Our Skin (available on netflix, at video stores, or free online, and very worth watching).

Since my lyme doc appointment put me half way to the rally the day before the rally, I was pretty determined to get there.  I saw my aunt and a good friend in Seattle, and was still trying to see my brother's family (and meet my niece), but decided to fly to San Francisco (where a very good friend and her family live, including adorable twin baby girls I had not yet met).  There were just enough flights to possibly make it, so I gave it my best shot.

My doctor appointment went long on Friday, because my doctor is incredible, so I had to bump flights around.  I posted from that leg of flights, here and in another blog, because those flights were pretty amazing as far as neat people and a spectacular fly over of Mt. St. Helens.  I think I flew through Portland, but all told I think the trip included 7 flights, so I already can't remember all the happenings of all of them.  Each leg had some sort of excitement, from extra security checks to having my knife confiscated, to having the airline take my bag, to a couple of first class bumps (free cocktails!) to being waved through a special expedited security line I didn't know even existed.

So, furlough day 1 my husband and I got called into my sons school.  So day one and two were mostly spent on sorting out classroom issues.  Day three was spent en route to Seattle (mostly waiting in the airport here trying to get a flight out), Day four I saw my lyme doctor in Seattle and by late that night was in my friend's house in San Rafael on the eve of the rally.

Day five was the rally itself.  I ended up late because parking was challenging to find and because my smart phone kept redirecting my trip.  One of my wrong turns put me in a parking garage that wouldn't let me out.  I had to 'come see them' and I was not happy.

I was hot, lost, late, sick, and tired.  I had to get out of my car and come verify my situation.  I'm past lyme rage now for the most part, thankfully, due to finally being diagnosed and treated, but my face still gets tired and angry looking sometimes (especially the Bell's palsy (formerly paralyzed) part of my face).  This was all added to by the lighter than average door of my rental car, so that as I got out to deal with them, what felt like genlty closing my car door turned into a huge, loud, dramatic slam that looked a bit like a tantrum.  Oh well.

So I missed some very interesting and furtunate events early on and/or before the rally started.   You can read in corresponding blogs about the fire alarm that rang, sending all of the doctors out to the front of the building where the rally was being set up, and see some of the conversations between rally organizers and key IDSA members that resulted from that event.

The photos in this post are just a few to get started.  There are more posted on my facebook page (Invisibly Lyme Montana) and there will be more in part two of this post.  It took me longer than expected to post any of this, so I'll give myself a little more time to get it all down.

There's still an awful lot to say in part two, but some expected highlights include people I met (famous and otherwise), a few neat conversations, and lots of links to other resources and media from the event.

A spoiler is that I met Jordan Fisher Smith (from Under Our Skin) in person and got to tell him how much it meant to have seen his story, especially as an agency person, because it helps put a face to all of this for agencies.  In the moment I was excited just to shake his hand, but I'm grateful to have gotten to have a more real conversation with him (the picture at left is Jordan speaking with one of the organizers at the beginning of his speach).



An ironic piece of that exchange (not truly ironic, but ironic in the mis-used sense that the word usually serves) was that in gushing my thank yous to Jordan for helping to change my life/outcome, I didn't recognize Andy Abrahams Wilson, standing near by.  I never offered so much as a word of thanks to him for MAKING the movie!  Even when I took his picture, I think I knew the crew from the movie was there, but I didn't know it was him.  I was trying to take pictures of all the neat conversations that were going on, and that happened to be one of them.  It's hard to imagine how many people each year will get diagnosed directly or indirectly because of that movie.


I'll have more on this in the second part, but it was really something to be around other people with lyme in real life.  I love seeing people stand up for themselves and others in such a productive, positive, and (hopefully) effective way.

San Francisco IDSA protest bound (from furlough day 4)

On my way to the security line at seatac just now, the TSA agent saw me coming, did a double take, and said, "WOW, LONG DAY?!"

Not the most flattering statement, but actually pretty funny.

This is day four of my furlough, through this week's government shut down.  I left Montana yesterday in hopes of making it over to Seattle to see my doctor in person for this month's appointment (insurance might pay now, but not over the phone, and my husband works a second job over the summer for an airline, so we get free flights for a little longer).  I made it to Seattle last night and stayed with my aunt.  Then had coffee with a dear friend on my way to see my LLMD (Lyme literate doctor is a phrase to learn if you might have lyme).  We unknowingly selected a coffee shop half a block from her office, which gave us a better amount of time to talk after we both hit traffic on our way to meet.

My doctor spent a great deal of extra time with me.  Most of my care is over the phone, since she is Seattle and I live in Montana (where doctors mostly don't believe in, or at least test and treat for, lyme disease, largely due to restrictive treatment guidelines).  I was too busy at work this fall to take advantage of my husband's temporary free flight benefits to come see her, until the government shut down (Oct 1, 2013). 

So here I am, hopefully en route to the San Francisco IDSA protest rally.  I've written a few posts along the way between flights and such, but typed them on my smart phone, so not all have posted.  

I keep choking up thinking about being around other Lyme patients in real life.  I now know a few coworkers and friends have had Lyme working in the east but were treated quickly.  This makes their experiences with lyme a lot different than mine, though they must now know how easy it is to contract.

The ranger from Under Our Skin will be there!  I've been thinking he was Forest Service, like me, but he may be park service or state.  I'm very much wondering if he kept his job and if he applied for workers comp.  I suppose I could find out on line.

I really hope I make it!  I think I will at least get on this Portland leg... but they are starting announcements, so my fingers are crossed!

San Francisco by Saturday? Protesting IDSA Oct. 5

Well, if I'm furloughed anyway......San Francisco here I come?

I've very much wanted to take advantage of my FREE flight benefits (through my husband's summer-second-job) and head down to participate in this coming Saturday's protest rallies outside of IDSA's conference in San Francisco (more below).

But work was supposed to be too busy this week, with meetings up through late Friday afternoon. So it was just not looking feasible.

But the government has shut down, and I am a federal employee.  My Lyme Literate Doctor (LLMD) is in Seattle, I am due for an appointment, and my insurance covers in-office visits now, but not phone visits.

So I've scheduled an appointment for Friday.

Which puts me closer to San Francisco by Friday.

If I am in Seattle on Friday, and can fly for free....

My amazing husband, who worked a second job all summer to earn the free flights but has not gotten to fly anywhere since the beginning of summer and has just started time off, is completely supportive of this attempt.  This means lots more juggling of house work plus major house projects than usual, plus kid shuttling all week and weekend....which he already does most of anyway while I try to work as close to full time as I can, because he is amazing.  I can say this because he doesn't really read my blogs (and I don't really mention when I write them) and he's not into social media.

So, day 1 of government shutdown/furlough, and four days until maybe attending the San Francisco IDSA Protest.

More to come, but THIS ARTICLE at LimeDisease.org (excerpt below), describes the motivations for this rally very effectively.

EXAMPLES OF HOW THE IDSA GUIDELINES MISREPRESENT OR IGNORE SCIENCE:

• They state that only "a few" patients remain ill after standard treatment while the true figure is 25 to 50 percent. (Stricker & Johnson 2011)
• They say the NIH-funded trials prove definitively that longer treatments are not effective DESPITE THE FACT that only four such human studies have been conducted, DESPITE THE FACT that two of the studies showed improvement on treatment, and DESPITE THE FACT that the sample populations in each of the treatment trials was small and did not reflect patients seen in clinical practice. (Delong et al. 2012, Fallon et al. 2012) Fallon's evaluation of the four trials concludes that "approximately 60% of patients with persistent post-treatment Lyme fatigue may experience meaningful but partial clinical improvement in fatigue with antibiotic retreatment."
• Two recent studies by members of the IDSA have found that the majority of the recommendations in the IDSA guidelines are based more on "expert opinion" than on scientific evidence. (Khan et al. 2010; Lee et al. 2011; Johnson & Stricker 2010a). Forty percent of the studies cited are written by the authors of the guidelines, who ignore other studies that don't support their viewpoint. (Johnson & Stricker 2010a).

 - See more at: http://lymedisease.org/activism/idsa-protest-why.html#sthash.SYZtkbh1.dpuf

My new Hero Lyme Mom ~ Overcoming paralysis

When I saw the length of the video and started watching it, I was going to share it saying you should at least watch the beginning of this if not the whole thing.  But you should DEFINITELY watch the whole thing.  Or save it to watch it all, and at least watch the start of it now so you see why you NEED to watch it.

This is one of my favorite lyme inspiration stories now.  I'm humbled by her amazing attitude (though giving myself the due acknowledgement, as per my last blog post, of some of my emotional responses to things being lyme-symptom-based to a far greater extent than attitude-based and reminding myself of the dangers of comparisons).  She is just simply amazing.

37 YEAR OLD MOM BATTLES NECK DOWN PARALYSIS WITH REHABILITATION

From YouTube:

Published on Jul 29, 2013

37 year old Kelly Downing gradually lost feeling in her legs and then woke up one day unable to move any part of her body below her neck. Kelly was diagnosed with chronic Lyme disease and no longer able to live her active life as a special education teacher, Tough Mudder, and active mom. Kelly's doctor sent her to Kindred Transitional Care and Rehabilitation Greenbriar in Nashua, NH to see if rehabilitation therapy could give her another chance at healing and recovery. This story, with video of Kelly during her therapy takes place from December of 2012 through March of 2013.

And some of Kelly's words from the video:

"That feeling of being hugged and that feeling of being able to give a hug is absolutely not of this earth.....My kids had tears, but they also had a look of such pride.  And between the hug and the pride, I went, what more am I gonna be able to do?"

Other links I could find:

Kelly's blog: 50 Shades of Lyme

Kelly's Heroes: A group that formed to support Kelley (accepts donations to help with her care)

Nashua Telegraph Article

Rehab video on youtube with text intro by Kelly

ILADS LymeWall: Power of Us Campaign


Important side note (especially if you *think* you might have lyme):

In addition to the inspiration this clip provides, it's a good reminder of the importance of the following words (which changed my life by leading to my diagnosis, and as with Kelly I first heard from a friend of a friend)

LYME. LITERATE. DOCTOR.

All the doctors out there that treat lyme are heroes.  They save lives and they give us back our lives.  These doctors risk a lot to treat us effectively, because they have to work counter to state and federal treatment guidelines to be effective, at great professional/legal/financial risk.  But in doing so they give us back our lives like the physical therapists did for Kelly in this video.  No one can give us back the years we lose to misdiagnosis and to infection, and none of us will ever be the same, but for so many moms, you give us back whatever is left of our kids' childhood and all that is left of our lives as functioning people, to whatever extent that is possible for each of us.

Symptoms vs. Effects: Acknowledging Psychological and Emotional SYMPTOMS of Lyme disease

Chronic Persaverence Facebook page

I feel there is a major and important difference between a symptom and an effect, particularly where emotional 'responses' to illness, or to the world at large during illness, are concerned.

If emotional symptoms fail to be recognized as symptoms (physical and or chemical in nature and caused directly by the illness, rather than occuring indirectly as an effect or outcome), then they serve as one more overwhelming stigma for patients who may be seen as lacking coping skills or responding badly to their circumstances.  Or seen as worn down by the illness (which can lead to inadequate or ineffective intervention for the symptom).

During lyme, coping skills are often completely irrelevant because they are simply not accessible.  There is no logical recipe for a good outlook during the worst acute symptoms of lyme, or while suffering from lyme (especially without treatment).  We aren't lacking a good logical perspective; we are suffering from a disease with many symptoms that defy description, especially while experiencing them, that make us look emotional or unbalanced (and they are not a function of logical outlook, though they may alter it drastically).

I can't describe how these symptoms occur or show them on a chart.  But they are real.  And even if we forget this ourselves, it becomes ridiculously clear when treatment starts to improve these types of symptoms.

It suddenly becomes easier to see where it was not physically possible to look calm and balanced (which we knew at the time but maybe couldn't see clearly) and somewhat easier to at least try to describe to people why it suddenly seems that we are coping better.  It's because the physical/chemical ability to cope is disrupted by lyme disease (as a symptom, separate from this occurring as an effect of the hardships of lyme).

We are also tired and in pain and dealing with a horrible illness, so it would be understandable to assume we cope poorly because we are tired or depleted.  But this is a dramatic over-simplification that is inaccurate and dangerous for patients who are already misunderstood and dangerously hard on themselves.

I strongly believe that this suite of confusing symptoms further inhibits proper treatment and diagnosis, because they make it even harder for patients and doctors to communicate effectively with one another, and because they make it so much less likely for lyme patients to be taken seriously by anyone they encounter and anyone in their lives.  But particularly because it causes us to be told to see a counselor for things we need physical help with first (a local counselor I was sent to saw this very clearly when I was sent to her to get help with illness symptoms that needed attention from my medical doctor).

In my case, these symptoms peaked during legal issues with my federal employer.  These symptoms make buying groceries difficult, but they make dealing with federal attorneys physically dangerous and emotionally debilitating.  In my case, at the worst of it, the cost was losing the ability to function out of bed for more than an hour or two at a time and complete seclusion.

To put a lyme patient in this kind of state in a room with lawyers for over eight hours (I was no longer bed bound at that point, but these were federal attorneys I had to fly to DC to meet with) and make them sign a legally binding agreement at the end of it all is dangerous and inhumane and should be illegal (my other blogs contain various accounts of the 1.5 year federal formal EEO process I survived in order to retain my job and not be forced onto disability).

The hard part for people to fathom is that a meeting or social gathering of any kind can be almost as difficult.  To be excessively sensitive to what others are saying (or might mean) while also being extremely unaware of how we sound and very limited in our ability to control how we sound are not symptoms that pair well in terms of maintaining relationships or protecting a professional reputation.

Sadly, openness with others about this disparity can often make things worse when dealing with people who don't understand.  It can make you seem more unstable and often opens the door for unsympathetic people to voice in with their assessment of the validity of your illness as well as the symptoms themselves.  It sadly serves frequently as an invitation for comments like, "It's that way for everyone," or "it's no different for me" or "life is hard for everyone."

It's very hard to forgive people who respond with further hostility when you offer that kind of openness.  So it becomes a lose-lose with doctors and coworkers in particular (don't tell them and appear unbalanced and hostile, tell them and appear unbalanced, vulnerable, weak, and complain-y).

When I've mentioned dangers so far in reference to these smptoms, I've meant the physical ramifications and regressions that are often brought on by the difficulties these emotional symptoms pose regarding treatment, relationships, and day to day functioning.

Far greater dangers exist, though, and I think a lot more recognition and investigation is needed regarding the most serious emotional and psychological symptoms that arise.  Suicidal behaviors arise in a large number of lyme patients.  I can't speak to which ones or why, or to whether this is the net impact of lyme induced depression (which can be both a symptom of lyme and an effect of this depressing illness) paired with the cumulative impact of the long term emotional symptom of lyme versus this being another symptom in and of itself.

When you look at these day to day and life threatening emotional symptoms and further pair them with cognitive symptoms (problems with word retrieval being one highly relevant example), you are looking at a very serious danger for lyme patients.

I've seen far too many posts about lyme and suicide, with what feels like a sudden explosion of attention (which is good except that it feels like its in response to a sudden rise in suicides, so the attention would be 'best' if it were sudden awareness independent of any increase in the problem).  I've also notice suicide prevention resources pinned to the top of a discussion board in at least one Lyme support group/forum (http://www.mdjunction.com/lyme-disease).

Please add resources if you have them to share with any remote relevance to this topic, but especially:

• Articles on emotional/psychological symptoms
• Articles on lyme and suicide
• Blog/social media posts that address any of this (especially encouraging ones)

A starter article on psychological symptoms is http://www.igenex.com/psychological_effects.htm, and starter social media post is the following shared photo with comments from my Invisibly Lyme Montana facebook page (which is what generated this blog post):

The number of posts I'm seeing on this topic breaks my heart. I hurt for everyone of us hurting with this. I feel so much better than most lymies do, and I'm doing so well... And even with that being the case there are devastating moments and days. Had one of those moments this morning in a very unfortunate and embarrassing setting. It's hard to describe how dark some of these moments can be, even amidst the brightness of recovery. So hard to explain how very PHYSICAL (and chemical) the emotional symptoms are. I think at some points in this illness and in some ways, the agonizing physical pain is far preferable to what this disease does to a persons emotions. The more we emphasize to our doctors and each other that this set of symptoms is one of the hardest and most REAL aspects of the disease, the better we can support and protect each other. We can't really get understanding on this part from most of the world, but we all need to have that understanding from somewhere.

Sorting through Lyme groups ~ Follow up link and lyme loonie commentary

This article is a good follow up to my last post, as it illustrates the roles of CDC, NIH, and IDSA.  This is all 'lyme 101' caliber info, certainly, but we all have to start somewhere in sorting all of this out.  And if you live in Montana or any state lacking basic lyme literacy, you've probably not had a whole lot of exposure to much of this.

NEWS: How CDC, NIH & IDSA work together to discredit idea of chronic Lyme - See more at: http://lymedisease.org/news/lyme_disease_views/pojo-foia-emails.html#sthash.AkHCXE2Q.dpuf

The "lyme loonies" quote struck me as particularly funny when this article and issue first crossed my path.  I was newly diagnosed,  so the inter-workings and nasty politics were still new to me.  It also struck me as funny, as it followed an article about a Montana mom that included some very dismissive statements from a state official along similar lines.

Funny isn't quite the right term.  I guess it struck a chord because it was so arrogant and offensive, yet also so ironically out of touch with any science I'd come across.  The 'funny' aspect was the term lyme loonie itself; funny in more of 'punny' way, because I contracted my tick as a biologist in a state they claim doesn't have lyme, and loons themselves are one of many migratory species I come into (direct) contact with.

I admit this is not universally funny.  Just funny to me, in that it represented a bit of an eclipse in several inconsistencies I was struggling to get my head around and several thinly veiled negative sentiments toward lyme patients that were making the 'science' all the harder to stomach.  A few of those inconsistencies, mentioned in other posts, with a link to this "loonie" statement:

• Why does the CDC feel so confident that migratory species drop their ticks before entering Montana?
• How do we know deer ticks are not present here?
• Why are we claiming to know that other ticks don't transmit lyme to humans, without evidence to support the claim?
• When has lack of proof of occurrence ever been considered to inherently prove non-occurrence?

I guess loons themselves are one of many examples of species/scenarios that don't fit with what I read on the CDC website about why my residency in Montana somehow contraindicates lyme or makes adequate testing and treatment less appropriate for me as a Montanan.  The picture above is loon in tall grass....that migrates in and out of Montana, passing through and wintering in lyme endemic areas with deer ticks.  Loons may not be a primary tick host, but we know this how?  Why would a tick on a loon not survive into Montana?

Carribou make it down from Canada, and a recent visitor of that species (lyme is known to occur across the border in every direction from Montana, including Canada) came covered in ticks.  Louisiana claimed not to have deer ticks or lyme until a black bear study proved that Louisiana had both.  

This post a bit disjointed, but as I've mentioned in other blogs, recovery is a process, and I don't think my writing will continue to improve without writing, or that my cognitive function or muscle mass will recover through treatment alone.

Here are a few (more on point) lyme wars and lyme politics links for further reading.

Lyme Wars (New Yorker article)

'The Lyme Wars' That Tiny Ticks Have Wrought (NPR)

TOUCHED BY LYME: Media Coverage Response

Sorting through Lyme Disease Groups (Patient Advocates vs. Non-Advocates)

(ILADS Logo)

Acronyms abound in the lyme world and I haven't fully learned yet how to keep track of who is who amongst all the various lyme groups.  When you are newly diagnosed or newly interested in lyme disease, they all sound just about the same.  There's obviously and L and a D, then an organization or association in there somewhere.  But the really horrible ones sound just as good as the truly good ones when you first hear their names (the movie Under Our Skin helps distinguish amongst the major players and serves as a good primer).

In most cases, if you were to read through the position statements and home pages of groups that sound objective or patient focused, as a person without any lyme disease familiarity, the differences wouldn't pop out right away.  Until you started to see certain trends emerge (that wouldn't sound too ominous at first, unless you are actively seeking diagnosis or treatment, in which case they slam into the side of your skull with great force):

• Only a few states have lyme disease present to an extent that warrants testing residents with lyme symptoms
• Many people only think they have lyme disease and waste public resources seeking treatment
• If you don't live in one of those states you don't have lyme (they will count you if you recently traveled to tick endemic area, but good luck getting treated when you've returned home and become sick, as many doctors get stuck on their beliefs regarding the prevalance of lyme in their state and fail to properly assess the symptoms of the patient)
• Only deer ticks carry lyme disease (I haven't seen any compelling biological/clinical evidence of this)
• Even though many areas are not looking at tick distribution, we know for sure that deer ticks only occur within the estimation bubbles on CDC's occurrence map
• The idea of chronic lyme is a misnomer (lyme requires urgent treatment, but apparently if you don't get treated it just magically disappears)
• If the tick wasn't imbeded for 24 hours, you don't have lyme disease
• If you didn't see a rash, its not lyme disease
• I you aren't proficient in tick identification, you don't have lyme disease
• If your state is not proficient in tick identification, you don't have lyme disease

The tenets of scientific inquiry do not support the chain of logic these groups (unfortunately including NIH and CDC, amongst other entities you might assume you can trust) use to support or even to test their claims.

Lyme patients don't sound like conspiracy theorists because they have far fetched notions about their illness.  We sound like this because logic and science support very different conclusions than oversight agencies and lyme organizations not based on sound science or the interests of patients.

The first viewing of movies like Under Our Skin or the first read through of a true advocacy group's position, given the wide gaps in logic and process that exist within lyme politics and guideline development, do tend to sound conspiratorial.  But when you look at the position of the CDC and IDSA, and then take any time at all looking into their claims with any degree of dilligence or rigor, you quickly see that compared to their claims, research states otherwise, experts with actual research experience in this field state otherwise, and the experiences of millions of people with lyme disease state otherwise.

The frustrating trends noted above go far beyond general misinformation and keep millions of people from getting timely treatment around the world.  Robbing people of their youth and vitality and costing hundreds of thousands of people their productivity is a far greater waste of public resources that it would be to treat them all.

Senate Bill 296 (tabled last session but worth supporting in the future)

MONTANANS especially, please SHARE these links and please contact your representative.

Montana Senate Bill 296 proposes to protect doctors who treat lyme with long term antibiotics.  Protocols currently call for 28 days of antibiotics early into onset.  But 28 days is not always enough even in the acute stage.  Chronic lyme is very difficult to get diagnosed in this state, as I've posted about before, so the odds of getting diagnosed and treated in the acute phase are pretty slim.  Once diagnosed, longer term cases of lyme cannot be treated as easily as acute cases.

In other parts of the country, even where lyme is known to occur and more commonly diagnosed and treated, doctors have lost their licenses and suffered serious financial consequences for treating patients with lyme.  The risk to doctors and the full complexities of the multiple debates surrounding lyme treatment and diagnosis are too much to dive into here, but a VERY good introduction to these issues is the movie Under Our Skin (it can be rented and is available on netflix and youtube in clips).

My hope is that reducing the risk associated with treating patients will also reduce the resistance to adequate testing and diagnosis.

It took me almost three years to get diagnosed, during which time I lost my job and had to endure a federal formal EEO process to get it back (a year and a half of grueling attacks, lack of pay, a lawyer, and an out of pocket trip to DC to mediate).  I have a very good local doctor, but current accepted protocols and beliefs about lyme lead her to different conclusions than me about where and how a person can get lyme, which meant having to go out of state for care.

This is why a bill like this one matters.  Without a reasonable hope of diagnosis (testing accurately is difficult, at best, with lots of different causes for false negatives) there is no hope of timely treatment and every Montanan I've come across with lyme took years to get diagnosed.

 This passed the floor 47 to 4 but I've heard there may be parties generating opposition, so please help generate support. This could really help.

Video link: Montana Legislature reading of SB 296

Audio clip: SB 296 (some good questions and answers)

Senate Bill 296 Information page (links, history, etc)

MT link for finding your representatives

Online comment form and tips for contacting representatives

out of the lyme light: Antibiotics: The Controversy

Another cross post from last March for invisible illness awareness week, this one from Turtle Medicine.

This a different branch of controversy (of the many), but the same kind of logical disjunct exists here as in the issues I've been dwelling on in my recent posts (mostly the odd reasoning in deciding where lyme is or is not contractable and why we think we know the distribution of tick species we haven't been looking for).

This article is also very pertinent to Senate Bill 296 (Montana, recently tabled) and major issues wotj treatment paradigms it attempts to address.

Anyway, good blog and good article:

out of the lyme light: Antibiotics: The Controversy: This post could take me into some pretty dangerous territory in the fight against Lyme -  how to treat? It really should be simple bac...