Thursday, March 21, 2013

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. 

Sunday, March 17, 2013

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

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?"