PLEASE HELP Montanans with lyme disease: Senate Bill 296

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

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Lyme Disease in Montana: Another montana mom with lyme, Great Falls article

http://www.greatfallstribune.com/interactive/article/20130309/NEWS01/303090026/Lyme-disease-divides-experts-Great-Falls-family-s-journey-disease-highlights-struggle-controversial-illness

As with many lyme disease stories I hear or read, there are elements in the story that I could have said myself. The stories in the video as well (more on those aspects my lyme experience in my health blog).

When I started to comment on the article on their website, it just got too long.  So I'm posting it here instead.

Biologists and agencies can't reliably say for sure where we do or don't have large forest carnivores, yet we trust medical doctors to reliably tell us where we do and don't have an organism too small to see.  That kind of certainly is fascinating.  The costs of the kind of survey effort it would take to conclusively disprove the presence of any 'competent' tick vector or specific species of tick would be staggering, and the likelihood that there is truly an agency currently expending that kind of money on tick surveys is much harder to believe than the idea that a bacteria present on all continents and all across this continent couldn't be here in Montana.

That would be a  pretty amazing survey strategy; to accomplish proof of absence would be a biological breakthrough and counter the tenants of biology I learned in school---absence of proof should never be considered proof of absence.  At the very least there should be very rigorous data to support the claim that we know a) the abundance and distribution of tick species throughout the state,  b) that we don't have any ticks or any organism in Montana that could be a vector for lyme disease, and c) that none of the migratory species that carry ticks from state to state continue to carry any of the species of ticks that transit lyme when they enter the state of Montana (apparently those species wait to land in Canada, or pretty much anywhere but Montana).

If we are certain enough of all of these biological assumptions to base medical policy decisions on them, I wonder which agency can afford the data collection efforts it would require to prove them.  The chain of evidence may be out there, but I find it pretty hard to believe.  It was government funded research that led to conclusions about this illness that are entirely consistent with what patients are experiencing (Dr. Burgdorf's comments in the article), but the CDC would rather hang their hats on diagnostic criteria that don't follow a clear chain of logic or proof (unless I'm very mistaken and amazing strides have recently been made in wildlife biology and entomology).

I just don't think the science is their to support the only assumptions that allow doctors (good doctors, mind you, including ones I respect) to claim it is impossible to get lyme in Montana.  And if the data were there, why would it be so poorly disclosed and explained (since it would make their point and would have been very expensive to come by)?

Zoonotic illnesses are an inherent risk of working in any animal related biological field.  But this one is a prevalent risk nationally to anyone who goes outside---how many Americans are aware that "Today, Lyme disease is the most common vector-borne illness in the United States?"

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It's raining spiders in Brazil (random science)

I saw an article posted on facebook with footage of spiders falling from the sky.  They quoted a biologist who said that the species is a social species that lives in massive colonies, and that the behavior is not unexpected/unusual.  The author contends that it is, and promises to follow up 'as answers are found'.

I started looking up some crazy things I remember reading about spiders jumping to their deaths (more on that later), but when I went back and watched the footage, they certainly were not making rapid descents, as the descriptor 'raining' would suggest.  The biologist quoted also described them as making 'sheet webs' which seems to explain this.  Either way, it's really something to see.

Article Link: Think Nemo's bad? In Brazil it's raining spiders

So, the memory this triggered for me was of a brain eating fungus that infects a particular spider host.  When the brain is infected the spider eventually climbs to the tallest tree it can find and jumps to its death.  Unfortunately I couldn't find anything on that phenomenon and got side tracked on the two following (random science) topics.

Mexican Jumping Death Spider

If this species (not actually originating in Mexico) chooses to jump and successfully reaches the apex of the jump, it will die at that point in its jump.  If it jumps or falls but does not consciously choose to do so, it will not die.  If it chooses to jump but does not reach the apex or is in some way obstructed from successfully jumping, it also will not die.

"The Mexican jumping death spider is a rare sight to see in Waterloo, and chances are if you see one, it will die trying to hide from you. Please, for the sake of the species, do not look for them; they are an endangered species"

Brain eating ameoba

This ameoba is fatal for the rare swimmer that contracts it in US freshwater, with the threat each year subsiding with the onset of winter.  But a couple of people have contracted it through their neti pots.  Only a couple, but still....I think I'll be using distilled water from now on.

Brain eating ameoba article

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At least 26 cases of lyme in Montana through 2011 (per CDC)

Help educate your fellow Montanans about lyme....I hear often and have repeated myself (until a few nights ago when two nurses set me straight) that there is only one confirmed case in Montana. That was outdated by at least 2007----even the CDC acknowledges AT LEAST 26 CASES FROM 2006 TO 2011. Your chances of getting diagnosed if you live in Montana won't improve until doctors admit that its here (and that residing here does not somehow make you immune to it here or anywhere you travel).

http://www.cdc.gov/lyme/stats/chartstables/reportedcases_statelocality.html

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Election photo (funny) from Missoula, MT

My friend Heather's photo, posted on facebook today....it took me a minute to see what was funny

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Posted on facebook with the following message/info:
Awareness and Understanding can save the life of a bear.
https://www.facebook.com/Understanding.Bears . This page is non profit and for educational use. Allowing people the opportunity to "Understand Bears"

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Hungry Horse

Because of the hills, you can't see the buildings in this picture that make up the businesses of Hungry Horse.  But they are all pretty much contained within the section of road you see here.....this photo stretches from one end of town to the other.

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My boots!

I'm ridiculously excited about this ebay purchase.  I've been looking for these shoes for years.  I bought my first pair of these sometime around 1997 and with one re-sole they lasted until the toes got heat damaged about ten years later.  I've not really found a suitable replacement yet.  My current boots make my toes numb when I'm not walking, and just Thursday, as I was gearing up at work at a trailhead, I was lamenting my inability to find another pair of these.

My friend Christine in college also bought a pair.  I greased mine to waterproof them.  She wisely did not.  They were already waterproof, and treating mine ruined the awesome nubuk-ish finish they came with.  Still, they were my hiking and work boots (whenever I didn't need my whites) for over ten years.

Now I need to finally start listing stuff on ebay so I can pay for them.  They were a good deal, so maybe if I can sell three or four things I can cover it?  My feet have changed a lot since 1997, but this was worth the risk.

What I loved most about these boots was that they were stiff soled without being heavy and without being overly stiff at the ball of the foot.  I'm not proficient at describing gear, and maybe there are terms for what I'm trying to describe, but I proficient enough with the gear I've used to know what doesn't work for me (and I rely on my gear enough for my livelihood for it to matter).  The internet's current plethora of gear opinions might have saved me many hard lessons in my twenties, especially where my feet are concerned.  Many a first-year wildland firefighter might have been saved a lot of pain and blood back then.

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Holy cow! Glacier Park Magazine

This is quite worth diverting yourself with.  I've liked this author's photos and writing over time (and I'm not just saying that because the author/photographer put my daughter in the paper, nor because he wrote a great article about Westana, nor because I liked his article on our bear ranger program a few years ago--although I was out of town for the story with my daughter in it, so I'd have otherwise only seen my husband's photo text of her school event).  In this case, its his photography.  There are certainly photos in this gallery I'd want on my wall.

http://www.glacierparkmagazine.com/glacier_park_blog/glaciernationalparkblog.html

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July Loon Day ~ Stanton Lake with Katie

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