Lyme Awareness Month 2014: Life after Lyme link (Check out Touched by Lyme)

I just googled this title as a search term.  I just finished a Girl Scout Night Trek in Canada with my troop and other local troops.  I'm recovering, of course, but I loved the moments when I felt like a fairly normal person.  Or at least what I think I remember of what that felt like.

It's lyme awareness month, so I wanted to start mine off with something uplifting.  With lyme, there's always some sad mixed in.  Here's one I enjoyed.

TOUCHED BY LYME: Coming back to life after Lyme disease

"It’s a universal feeling, wanting to cling to youth. For Lymies, the feeling is less about nostalgia and more about grief for lost time. At some point for people struggling with chronic tick-borne disease, one tick stopped the clock entirely. I sometimes joke that I feel like I went to sleep when I was 25 (when I first got diagnosed) and woke up when I was 33 (when I went into remission and moved to Boston). For all the laughs I get, the truth is, there’s nothing funny at all about losing eight years of your life."

Post on Lyme Disease Antibiotics Controversy from Out of the Lyme Light

This a different branch of Lyme disease controversies (of which there are many), but the same kind of logical disjunct exists with antibiotics use protocols for Lyme disease as with the diagnosis and regional distribution issues I've been dwelling on in my recent posts here. (Primarily focusing on the odd reasoning used by the CDC and State Health Departments 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).

The article linked to below is also very pertinent to Senate Bill 296 (Montana, tabled March 2013) and major issues with treatment paradigms it attempted to address.

As for antibiotics, one of the problems Lyme patients face is that IDSA guidelines specify 28 days of antibiotics and insurance companies don't have to pay beyond that time.  So, even if you have the great fortune of an early diagnosis, you may not have access to adequate treatment, as 28 days of an antibiotic is often not enough time, and does not address coinfections well enough on its own.

If you are diagnosed months or years after infection, I believe (based on substantial reading of peer reviewed studies and papers on the behavior of Lyme spyrochetes, cysts, and biofilms) a round of antibiotics this short could actually do more harm than good.  As a biologist, I feel that my tremendous progress to date is substantial enough to support that longer term antibiotics were needed for my progress so far.

As a biologist, I can't draw inference from my single experience to the enormous group of people suffering from lyme---but it would be better founded inference (that would be supported by available science and overwhelming evidence from patients) than the statements currently made by IDSA and CDC, which are not supported by or in keeping with best available science nor clear, logical reasoning or any type of discernable or transparent decision framework for their conclusions or protocols.

Anyway, good blog and good article (link and excerpt below):

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 bacterial infection = antibiotics (abx).  For some reason, researchers have persisted in claiming that 30 days of abx will cure Lyme, and if you're still ill after that, then you don't have Lyme.  EVEN IF YOU STILL HAVE A POSITIVE BLOOD TEST.

Keeping it short and sweet: this causes lots of problems for people with late diagnoses.

PLEASE HELP Montanans with Lyme disease: Senate Bill 296

I don't feel well enough to be up this late, and I'm too tired to type a separate post, so follow the link below for the post I typed earlier tonight (links and info on the bill and contacting representatives).

Rather than cross post the entire thing, here's the link and a couple of excerpts.

Montana Momma post about SB 296

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.

You can read the rest of the blog post, including a bit about my 3 years of misdiagnosis (and how better legislation might have helped) and more on Lyme in general on my Lyme blog, Invisibly Lyme Montana.  With the primer moving linked to above and with a little delving, it is clear to any educated reader that the IDSA/CDC diagnosis and treatment guidelines used nationwide are inadequate and dangerous.  What happened to me could happen to anyone.

LYME WARRIOR post: If we can change our thoughts...

This is pasted from a facebook lyme page I found yesterday.  It's timely and helpful and well-said.

The page is:

Lyme Warrior

The post is (with spacing added):

Attention: This page was set up to spread awareness of "lyme disease" (I refuse to capitalize this term anymore) and that I will continue to do. 

However, in order to SPREAD awareness, we must first discover it for ourselves. And as I explore my own awareness I find it necessary to keep in check what power I give this or any illness or DISease. I urge those struggling to stop struggling. 

Change the story in your mind.What if we see the blessing in things falling into place rather than falling apart. It hurts much worse when we try to hold on to something for dear life. Just imagine how exhausting it is. Your poor mind and body are tired and want to let go. What we WERE doing is no longer working or else we would not be in the spot we are in. Change is inevitable. Find surprise and excitement in the unknown. 

Say to yourself, "I wonder what miracle awaits for me tomorrow" instead of "oh God, another day of this hell!". After all, we are indeed a product of the thoughts we create. 

What if things do not have to be as difficult as we are making them. What if we STOP IDENTIFYING ourselves with these circumstances. What if the mind no longer contemplates illness. 

Well then wouldn't the body eventually have to follow? We need to change our thinking before we change our bodies and our cells. If we can change our thoughts we can change our world NO MATTER THE CIRCUMSTANCES AND THERE IS NO EXCEPTION TO THIS RULE! 

When we change the way we look at things, the things we look at change. I can easily say "i lost everything" But instead I am saying, "I am so lucky to be able to start all over"...So now I await the miracles that come tomorrow. I hope you can and do too.

Lyme in Montana: Great Falls Tribune article about a mom with lyme

A great article in the Great Falls Tribune mirrors several aspects of my experience so far (3 years sick, traveling to Seattle to get diagnosed, among other things).  This is a portion of my commentary after reading this article (the video at the link is great too).

Great Falls Tribune article:Lyme disease divides experts, Great Falls family's journey...

One of my favorite comments (from the video) was the woman who's friend was urging her to get tested, I think, and explained that lyme resides deep in tissue, especially the eyes and knees.  She said that resonated with her----one of my steadiest symptoms through all of this was the pain behind my eyes.  It defies explanation how constant the feeling is....it's gotten better during treatment, but my eye doctor found tissue damage at the back of my eye (Bell's palsy side).  My knees are worse, but either way, the statement resonates with me, too.

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 (there's much more to this train of thought in my Montana Momma post on this article).

When I first read the article, I couldn't help but post a couple of comments.  I wonder what the Tribune disliked about them enough to take them down.  They use a facebook interface for comments on their stories.  I posted as my facebook illness page (Invisibly ~ Ill) but if that were the reason, I wonder why they would allow comments from page.  These are the comments they appear to have taken down:

First comment:

Wow. Very few differences between this and my story. Differences: Hers started one month before mine, I did have a tick, my bullseye rash was on my scalp and my doctor didn't see it, and she got diagnosed after two years instead of three, and I had Bells palsy early on. Otherwise...years of symptoms, sick for three years so far, and trip to Seattle to finally get diagnosed. Doesn't it seem worth considering patterns, such as the clustering of patients in western Montana? And worth answering inconsistencies, like the facts presented by the renowned scientist who discovered the disease (this is a slow growing infection that burrows into tissue--hard to detect and hard to treat)? Why a month of antibiotics would be expected to be sufficient, biologically speaking? Why there are vectors north, south, and east of Montana, but not in Montana? Why, given the characteristics of this infection and the MANY ways it can be missed, it is still argued that badly timed and consistently inaccurate tests are relied upon? I don't want to think about conspiracies, I want to think about treatment, but with lyme, one has to face both and figure out how the two are ultimately related.

2nd comment:

I've found four people in my small town that contracted lyme in Montana. Without looking for them. I can't help but wonder how many I'd find if I really searched. Louisiana discovered that they did have lyme in their state (another state thought to not have it) through a study from ticks on bears. Having worked (sometimes hands on) with large mammals (alive and dead), migratory birds and bats, it's hard to accept that it just can't make it into Montana.

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 that there is only one confirmed case in Montana (until a few nights ago when two nurses set me straight) . 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

Please sign a petition to help lyme sufferers get diagnosed and treated

Follow this link to sign the petition:

Reform the Infectious Disease Society of America Treatment Guidelines for Lyme Disease

"Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary."

For further information on the politics of lyme, also watch the movie "Under Our Skin"

Yoga for Lyme

A facebook post from the author of a Lyme disease support page (Lyme Thriving) mentioned a yoga class in NYC designed specifically for people with lyme and chronic lyme.  It was a light bulb moment.  Not a new thought, exactly, but at least a more complete formation of an existing thought.

So I googled yoga for lyme and it was an even more fruitful query than I expected.  This blog post is just the first I read, buy worth reading (for other chronic illness, too).  The first pose in his list for lyme is one of the best poses for me and has been through out my illness, so I plan to try the others and look up the one he recommends for clarity.

I should probably start posting about my lyme explorations and testing so far.  You'd think after almost three years as a sick person, new tests and medications wouldn't clam me up all of a sudden.  But I guess I've been on a bit of computer hiatus anyway, so it also just fits with that trend that I haven't blogged about it.

Social media certainly draws me in more than I ever intend it to (for example, I've typed this whole post with one contact, even thought I intended to go switch to glasses quite a while ago) and time and energy are to limited to spend in unintended ways.

When I could do the things I intended (pre-illness life, we're talking here now) Yoga was one of them.  The yoga photos below are on the shore of a remote backcountry lake in Glacier National Park during a backpacking trip with friends.