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Thursday
Nov052009

"Under Our Skin", Under My Skin: A Lyme Disease Documentary and My Test Results.

 


Under Our Skin is a documentary about Lyme Disease, and has received large amounts of critical acclaim from critics and at independent film festivals across the country.  The Minnesota premiere of the film is happening November 8,9, and 10 here in Minneapolis, at the Oak Street Cinema, and this is my shameless plug.

Here's a synopsis of the film:

"A gripping tale of microbes, medicine & money, UNDER OUR SKIN exposes the hidden story of Lyme disease, one of the most controversial and fastest growing epidemics of our time. Each year, thousands go undiagnosed or misdiagnosed, often told that their symptoms are "all in their head." Following the stories of patients and physicians fighting for their lives and livelihoods, the film brings into focus a haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients."

 

Why am I so interested in this Lyme movie? 

Lyme hits home.  Since learning of my cousin's diagnosis of late-stage Lyme Disease earlier this year, my family and I have delved into researching and learning what we can about the disease in order to better understand what she is going through.  My aunt obtained a copy of the film on DVD, and she lent it to me a few months ago.  I was totally engrossed in it, and watched it a few times.  After watching the film, it struck me more deeply that I should listen to the concerns my aunt, uncle, and cousin had about my symptoms echoing those of Lyme.  I didn't want to be tested - fear! denial!  But after reading more about the disease, talking more with my cousin, and seeing the stories of the individuals in the documentary, I fully accepted that Lyme was a distinct possibility.    Contemplating a future with untreated Lyme Disease became much scarier than just getting the test done and learning the results.  My naturopath and I talked about my concerns, and she thought testing was a good idea.  So, I got a Western Blot test done through IGeneX, Inc. , a state-of-the-art laboratory that specializes in Tick-borne illnesses.

Results?  Positive marks for IgG and IgM, those darn "+" signs on multiple bands, with a few indeterminate marks on others.  I keep hoping that the more I look at those results something will change.   I need to say it out loud to believe it.  I have Lyme Disease.

Do I really have Lyme Disease?  Yes, I do.

According to CDC/NYS, my test results are borderline; the two indeterminate bands in my test result add an interesting twist.  But combined with the bands the are undoubtedly positive, and my health history and symptoms, my naturopath says it is Lyme, and worth treating.  I've heard of false positives, and this is certainly a concern - especially with my borderline results.  But, according to my new Lyme-specialist ND that I'll be seeing for the first time next week, Lyme it hides in the tissues, and easily evades testing.  Once treatment is started, and it starts to emerge from the tissues, and shows up more clearly with testing.  So, people with cases that look borderline at initial testing (showing weaker bands) have test results that go crazy once treatment has started, with more bands of more intense strength. She believes this may be the case with me.  The combination of test results and symptoms seems undoubtable.

The reality of this is setting in.  It seems that I am now one of many. I have something with a name.   I have a ribbon (it's green).  I have a support network.   This diagnosis doesn't change who I am, nor does it suddenly make me feel worse.  Instead, it sheds much needed light on all the junk I still deal with.  As I write this I have shooting pains down my arms and into my fingers, my knees are achy, my eyes are itchy, and I've got a headache.  Why?!  Well, finally, the "why" I ask myself all the time - the "why" of the fatigue, excessive joint pain, occasional brain fog, random heart palpitations, the hormone imbalances, digestive issues, the list goes on - seems to have an answer.  The more I read about Lyme, the more I read about other people's experiences, the more I see myself, and the more this makes sense.

I've picked lots of ticks off my body over my lifetime.  I grew up in a family that ran around Northern Wisconsin, went camping and hiking, and I loved going to summer rustic camps.   My love of nature is steadfast; the woods are my sanctuary. I lay in the grass, I climb trees, I walk through brush, and I have no intention of stopping.   Nature is our blessed friend and is deserving of the utmost respect and love; it is not something to be feared or avoided!  But the danger of ticks was also something we were cautious of, with tickchecks closing out each day.  Did the fateful tick bite me when I was young, and that's why I've had such weird digestive problems, back and knee pain, and issues with depression since I was a teenager?  Maybe it happened in college, when I started developing all those food allergies?  On the other hand, a few years ago I had a weird red bullseye rash (but no tick) that puzzled doctors, and after that more stuff started going weird with my health.  Could that have been the telltale bite?  Yikes, I could drive myself insane remembering all the ticks, bites,  and rashes I've had.  And really, what good would it do?  Trying to pinpoint the exact time I got it doesn't change anything about the present.  All that matters is that I do what I need to do today to deal with it.

In time, I think I will learn to be more comfortable with this diagnosis than with the grey-colored land of uncertainty in which I had formerly been living.  Uncertainty can drive you mad and exhaust your body, mind, and spirit.  Nothing is more exhausting than working and working and working and not knowing what you're working for.  But knowledge?  Knowledge is power.  Knowledge is a tool.  Knowledge can bring resolve to the whole physiological and psychological self.  This diagnosis may be the center of the enormous f****** onion I've been peeling away at for years.  And that is exciting.

I keep telling myself that all these experiences will make a REALLY good healthcare provider someday; there is nothing quite as valuable as first-hand education, right?  I'm not taking any classes right now, but I think I should just start telling people that I'm a student; a student of life, in all its unexpected and complex glory.  I'll be seeing my new Naturopathic Doctor next week; she specializes in Lyme and works with a Lyme-literate MD in New York.  I'm interested to have her look at my test results and get her point of view.  Even though she has already been in contact with current ND and knows about my symptoms and results, I keep hoping that she'll look at them and be like, "Oh wait no!  You and your naturopath were reading this all wrong!  This isn't Lyme...."

I have no idea what to expect.  I'm feeling so conflicted, a very weird mixture of determination, fear, confusion, relief, and denial.  Fine readers, do you have suggestions?  Advice?  Reassurance?  I'm open, please send it my way.  I think that meditation practice my acupuncturist suggested I start is an absolute must.  Thankfully, I'm armed with a good support network of friends, family, and healthcare providers, and I'm as committed as ever to that good old sense of self-preservation, no matter how this all pans out.   As my dad said, it is time to "Win! Conquer! Destroy!"  Next week, I guess I'll find out more about how I'm going to do that...  At least the dietary restrictions I've become so comfortable with translate to a Lyme diet protocol perfectly; that's probably why I felt so much better once I started to eat this way.

In the meantime, I'll be attending the screening of this film, and rubbing elbows with my fellow, uh, Lymies.

That's what Lyme Disease sufferers are called, did you know that?  I heard that label being thrown around a few months ago by some Lyme folks I Twitter with.  I chuckled at the name at the time; I didn't think I'd ever need to use it for myself.

Anyway, if you live in the Twin Cities area, please come to the film, perhaps our paths will cross!  Seriously, if you live around here and plan on coming, leave a comment with when you think you might attend, I'd love to know!  How timely that this film is showing this weekend - now I can wrangle all my friends to come, and have them all learn about Lyme Disease at once.  How convenient.  [insert a pinch of sarcasm here]  For those of you who don't live around here, check out www.underourskin.com for a listing of other screenings - it is showing all over the country, and you really ought to check it out if you can.

 

UNDER OUR SKIN
Minnesota premiere of the award winning documentary

Oak Street Cinema
309 Oak Street SE, Minneapolis, MN
Show Times:
November 8, 2009: 2 PM & 5 PM
November 9 & 10, 2009: 7:30 pm

General admission $8, Seniors $6
Admission $5 with MFA membership or valid student ID

For more information on the documentary and additional screenings, check out: www.underourskin.com
For more information on the screening at the Oak Street, check out:


May you have passion to seek the truth, courage to accept what you find, the strength to change what you can, and an unfaltering commitment to the beauty that is YOU.

 

Hope to see you at the movies.

xoxo, Kim

 

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Reader Comments (3)

I do not know much about Lyme, so please bear with me. I am not trolling.

Some time ago - a year or two - when I last looked at Lyme, I came across the suggestion that almost everyone who tests for Lyme disease tests positive using the more sensitive test. There is therefore much concern about false positives. Do you know anything about this? Has it been resolved? I also understand there are too many false negatives on the other test, so it sounds like testing is sort of a joke.

I also heard the possibility that mosquitoes can carry Lyme, and perhaps other insects do too, which would mean that anyone who has had a bug bite could have Lyme. Have you heard this from your Lymie friends? Any evidence?

Tell us about the dietary protocols. Is Lyme a known celiac trigger?

November 5, 2009 | Unregistered Commenterpdw

Hi pdw,
Yes, I've heard some about false positives as well, but to be honest, I don't know much about it. This is all very new to me, and I'll be learning more next week; the notion of a false positive is certainly a concern for me, for obvious reasons, especially with my borderline results!

THe Western Blot test is supposed to be the most accurate; ELISA sounds like it is full of errors. I got Western Blot. I've also heard that ALL tests need to be taken into consideration with health history and symptoms - never just on their own. Like so many other diagnoses of so many other health conditions, it is never wise to rely solely on test results.

I don't know anything about the possible mosquito connection.

Dietary protocols - it sounds like a lot of doctors recommend a diet high on protein and fiber, and lower in carbs overall, with the focus on complex carbs and no simple carbs. no sugar, no caffeine, no alcohol. from what I can see, a GF/CF diet is often suggested. I don't know if Lyme is a celiac trigger, but because it affects the immune system, I would imagine that it could push people already carrying the celiac gene into a health situation that could make them more likely to develop celiac.

More to come as I learn more.

November 5, 2009 | Unregistered CommenterKim

Wow, Kim, this is huge. Scary, I'm sure, but huge to finally know what you're dealing with so you can set a plan of action! I've often wondered if I have Lyme but there aren't really any doctors here who believe that it exists--the percentage of people actually diagnosed with Lyme is pitifully tiny over here, yet about 50X higher right across the border in the US (in other words, they want us to believe that suddenly, a few hundred yards away, the incidence of Lyme increases by leaps and bounds, yet over here it's almost nil. I think not).

What will your treatment be? Are you being treated naturopathically, or with antibiotics? Hope you're feeling better already, armed with new knowledge at least!

I've also seen trailers for the film and am going to seek it out when it arrives here.

Good luck with this new path--if anyone can explain it clearly, engage us in the process AND find delicious foods to take you along the way, it's you! :)

November 8, 2009 | Unregistered CommenterRicki
Sorry, no comments/questions allowed right now.
Hi reader! My schedule as full-time grad student with two part-time jobs doesn't allow me the time to manage comments. I hope you enjoy what you find and can figure out answers to any questions you may have. xo