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Kathryn Maroun: Stage 3 and me — an update from the front lines in the battle of her life with Lyme

“Plato says that the unexamined life is not worth living. But what if the examined life turns out to be a clunker as well?” Kurt Vonnegut, “Wampeters, Foma & Granfalloons” 

When I look out the window of the plane onto the vast nothingness below, I wonder where all the people went?

I mean their bodies, when they passed away?

So many people have lived before me, and yet there is no sign that they ever existed. I conclude that they are the dust that I wipe off the dresser from time to time. We are all so busy doing and gathering that we blast through the years before realizing that middle age has struck us down in our prime.

Kathryn in happier times in Mongolia. Photo courtesy of Kathryn Maroun

Kathryn in happier times in Mongolia. Photo courtesy of Kathryn Maroun

Each day is a blessing, a kernel of potential and promise. Yet we plow through them as if through a bucket of buttered popcorn while we wait for the movie to start. I bet you can’t even remember where you were and what were you doing on Feb. 19, 2013?

Intrigued, I decided to poll some of my friends. Thirty percent could not remember what they were doing five days ago. But the ones who could remember reported this to me: Moirajeanne from Pennsylvania painted the front of her shop, From Here To Timbuktu. Bill from California was “taking care of some business affairs.” Michael wanted to know what he had missed. Barbara was in Rolla, Mo., “writing like crazy, catching up on an extended deadline.” Was this a good use of time?

You may be surprised to learn that people spend more time in bed than they do participating in sports and leisure activities. This doesn’t seem right. I would much rather be on a river in the Gaspé region of Quebec, angling for Atlantics, than sawing logs.

“Life is problems. Living is solving problems.”—Raymond E. Feist, “Silverthorn”

So are you wondering what I was doing on Feb. 19, 2013? Not likely, but I’m going to tell you anyway. I was at yet another doctor’s appointment getting all “pilled up.” Definitely a waste of my time!

I battle Stage 3 neurological Lyme disease and co-infections, a chronic affliction that will result in an early death because of improper treatment of the infection(s) that are transmitted by the bite of a single tick.

tick_dime

Can you see the tick? Photo courtesy of Laura Johns Moore

You may be surprised to learn that in most places globally (and yes, it is a global plague) it is illegal to treat this vector-borne illness with more than four to six weeks of antibiotics. A slow, tortured death is what will follow partially treated Lyme, as the spirochetes eat me from the inside out. This is, after all, the cousin to syphilis. Corkscrew spirochetes permeate every organ in the body.

portforLyme_treatment

Kathryn injects herself in a port that has been inserted into her body. Photo courtesy of Kathryn Maroun

It is madness that I was given a year’s treatment for acne with the same drugs that are illegal to prescribe for the treatment of late-stage Lyme disease (the same antibiotics used for treating syphilis). This is, after all, the preferred treatment against the plague of our time. It is beyond comprehension that I would be denied access to the only hope I have of getting well.

I will never forget the day my doctor wagged her bony finger in my face, saying, “I’m not giving you antibiotics. Your body will look after this.”

She. Was. Wrong.

Meanwhile …

Some people did make good use of their time on Feb. 19, 2013. They met in Virginia to pass a bill that would make it possible for doctors to treat tick-borne illnesses without fear of prosecution. This (along with inadequate testing) is why Lyme is underdiagnosed and improperly treated.

 

Bill 1933, aka the Virginia House of Delegates Senate Lyme Disease Testing Patient Disclosure Information Bill, states that a negative Lyme test does not mean that you don’t have Lyme disease. This information will make it possible for doctors to treat patients based on symptoms. In some states it is even possible for doctors to treat Lyme for longer than four to six weeks without fear of losing their licenses, as so often happens elsewhere.

That is why Lyme is underdiagnosed and improperly treated. That is why I’ve spent the last three months holed up in a fleabag hotel off the highway in California, rather than being surrounded by friends and family at my home in Bermuda.

You see, California, Connecticut, Massachusetts, Minnesota, New Hampshire and Rhode Island are the only states that have changed laws to make it possible to treat late-stage Lyme disease. Before these new laws were penned, doctors could be thrown in jail for giving Lyme patients more than six weeks of antibiotics. Their medical licenses could also be revoked. If you or a loved one lives outside this safe zone and are dealing with untreated Lyme disease, you will suffer a similar fate to all those who came before you.

“Human beings are so destructive. I sometimes think we’re a kind of plague, that will scrub the earth clean. We destroy things so well that I sometimes think, maybe that’s our function. Maybe every few eons, some animal comes along that kills off the rest of the world, clears the decks, and lets evolution proceed to its next phase.”Michael Crichton, “The Lost World” 

Bugs that bite are nature’s dirty needles. The politics of Lyme disease is a cancer.

Kathryn Maroun

Kathryn Maroun and guide Mario in better times, too. Photo courtesy of Kathryn Maroun

Make good use of your time today and get up to speed on this important issue. It may save your life or the life of someone you love.

You may be moving to the Golden State. Good fishing here.

kathryn_maroun_catfishing

See Kathryn Maroun in action at YouTube at What A Catch.

  • About Kathryn Maroun

    Kathryn Maroun is one of a handful of Canadian women to be certified as an FFF casting instructor. She is the award winning executive producer of What A Catch Productions. The 52 show series highlights Kathryn's fishing adventures from around the world. Kathryn exposes never talked about hazards of the sport, conservation, culture, as well as showcasing exotic game fish in her series. Her show first aired in the US before being internationally distributed. Kathryn is featured in the collection of two prominent museums for her significant contribution to the sport of fly fishing. Kathryn Maroun is the president and founder of Casting for Recovery Canada, past director of Trout Unlimited Canada and past member of the Canadian World Fly Fishing team. Along with creating a line of clothing for women at work in the outdoors, Kathryn has fished around the world and has a number of world record fish to her name. Today she dedicates her time to writing about her miss-adventures and enjoys telling her stories through keynote speaking opportunities. Kathryn is campaigning to create a more balanced playing field for women in the sport.

     

The Conversation

28 Comments
  • Stage 3 and me — an update from the front lines in the battle of her life with Lyme says: October 30, 2013 at 11:16 am

    […] Originally appeared on the Women’s Outdoor News February 25, 2013 […]

  • Lyme Disease Awareness Month Guest Post – Part 6: Balance in the Ecology of Lyme Disease says: May 28, 2013 at 12:17 pm

    […] Lyme disease while powerfully advocating for fellow fighters. I invite you to read her story here at the Women’s Outdoor […]

  • Rachael says: March 20, 2013 at 11:44 pm

    Kathryn,

    Your dedication to sharing and educating is an inspiration to me, though I do not have Lymes Disease, I like others have my own challenges. Your grace and tenacity with getting the word out is, I am sure, met with the utmost gratitude. As it is said, “angels come in all forms.”

  • Ari says: March 16, 2013 at 11:27 am

    Kathryn,

    You are an inspiration! God Bless you girl, you are in my thoughts!

  • Howard Levett says: March 11, 2013 at 8:49 pm

    Hi Kathryn,
    You are an inspiration for anyone fighting an illness no matter what it is. Keep up the good fight and know you are not alone…you’ve got an army behind you. My prayers and best wishes.

    Howard

  • Part 6: Balance in the Ecology of Lyme Disease | roomfullofideas says: March 10, 2013 at 4:59 pm

    […] Lyme disease while powerfully advocating for fellow fighters. I invite you to read her story here at the Women’s Outdoor […]

  • Bill Brady says: March 7, 2013 at 11:11 pm

    Kathryn,

    You are an inspiration to those of us that are fighting our own battles for our health. Your “never give up” attitude reminds us to keep plugging away. God bless you, and you are in my prayers for a complete recovery.

    Bill

    • kathryn Maroun says: March 10, 2013 at 5:57 pm

      Thanks for keeping me in your prayers Bill.
      I do believe in the power of prayer.
      So true that we all have our battles to endure. I hope you navigate clear roads and that the river soothes you when you hit a speed bump.
      Remember in those times that nothing ever stays the same. That is what keeps me going. HOPE
      best
      kathryn

  • The River Damsel says: March 2, 2013 at 9:34 pm

    My new found friend, Kathryn… I was deeply moved by this story you published. My thoughts and prayers are definitely with you. I hope you will now get the treatment and help that you deserve. The uphill battles of life!! It is a very frustrating issue to say the least. As I too, have a disease that requires ongoing medication, I understand the necessity of correct diagnosis and treatment. Bless you in your days to come while you recover from this painful event in your life. You are on your way!!! I know you are… Perseverance and positive thinking are on your side. = )

    • kathryn maroun says: March 5, 2013 at 10:24 am

      A warm hello from sunny California.
      I think the same attitude that made me a good angler will help me here as you have so smatly pointed out. You call it perserverance….I call it stubborness.
      I’ve ended up in a bit of a mess. I pray that you stay safe by protecting yourself from bugs that bite. They are natures dirty needles. Be sure not to put your fly in your mouth when you are tightening the leader…..This transfer can make you very sick down the road. Lastly…..if someone in a foreign country tells you to try something but your little voice tells you not to eat/drink it, then for goodness sake, DON”T TRY IT!
      I’m positive that all of these things did make me sick:)
      hugs
      k

  • Les Booth says: March 2, 2013 at 2:45 pm

    I posted this on Kathryn’s Facebook and forgot to post here … so – here, ’tis ..

    Kathryn … what to say? Oh there’s lots I could, but you’ve already said it so heartfully. I have been and will continue to pray for you: strength, patience, tenacity and well-being – and yes, healing.

    I wrote, recently, to another young lady, who is among my FB list and dealing with late-stage lyme. She too was an active, and very public person, now sidelined with the ravages of this disease. She struggles as well. With the frustration as well as the physical delamination.

    My main comment to her was simply this: Turn the negative of this trial into the positive force to serve others. This is the KEY to the whole experience being of value: Bringing about your life and focusing positive affect onto the lives of others.

    In all of this trauma; the isoloation, frustration, depression and pain; I am heartened by both of you. In your openly public revelation of your difficulties; the honesty, in baring your weaknesses; they have become your very strength and tenacity in the struggle. Speaking out strong; determined; focused. Looking to the future, seeking to correct the errors of ignorance and bias. More good than you can know is being affected.

    You ARE having a positive effect! Never doubt this for a second! NEVER

    • kathryn maroun says: March 5, 2013 at 10:38 am

      Les
      Sound advice and a good path.
      Not so easy in practice. I’m still learning to live with all the changes that come about when dealing with chronic illness.
      I’m working on a new show about my journey. It is months behind schedule but it is well underway. The film will give a clear view into my world. I dare you to watch:)

  • Garry says: February 25, 2013 at 5:40 pm

    Hi Kathryn
    My spouse has been fighting lyme disease for four years now and is close to being cured if that is possible.Has taken a crap load of antibotics in the last 4 years.Started out as losing balance(not going to list all of the othe symtoms) and finally got into a wheelchair.Now she is even doing a bit of jogging.
    Here in Quebec Canada lyme supposedly doesn’t exist, Doctors here won’t even talk about it.Thank God she found a Dr. in the US.
    All we can do is keep after our gouv’ts and inform people about the horrors of the terrible disease and what to look for. Keep the faith and keep writing the good articles.

    Garry

    • kathryn Maroun says: March 8, 2013 at 9:32 am

      Garry
      Thank you for taking time to warn people that lyme does in fact exist in Quebec. Like you, I worry about people who spend time in the great outdoors and or even the schoolyard. I’m thrilled to hear your good news about your wife. Not enough of that sort of news in my neck of the woods.
      Bless you.
      k

  • Fergie Graham says: February 25, 2013 at 2:04 pm

    I am so sorry you have to suffer this terrible disease . You are an inspiration to so many of us . I hope they come up with a cure sooner rather than later , it doesn’t seem fair that youhave to suffer . But this is rto let you know we are all thinking about you .

    • kathryn Maroun says: March 8, 2013 at 9:40 am

      Hey my friend
      I was thinking about how much my life has changed. Once upon a time I was getting the mercury motor set for a day on the water. This week the only mercury I see are the one’s in my mouth that are being replaced so that I can start dealing with heavy metal poisoning made possible by bug born illness. Bug’s that bite stop your thyroid from working, stop your body from absorbing nutrition, thicken your blood, cause hormone imbalance, Prevent detox, cause fungal and yeast overgrowth, create an acidic home for parasites to take hold, mess with hormones, etc
      My only worry pre lyme was trying to decide what fly to fish next.
      Better times ahead

  • Moirajeanne FitzGerald says: February 25, 2013 at 12:57 pm

    Kathryn keep your fighting spirit strong
    between treatments, with that library of
    beautiful fishy places you have in your
    head & heart. The world needs you.

    • kathryn Maroun says: March 8, 2013 at 9:43 am

      Thank you my friend.
      We both have friends who have undiagnosed lyme disease that is eating them alive from the inside out. I’m so happy that you use your voice to remind people to protect themselves from bugs that bite.
      xo

  • Bill Bowers says: February 25, 2013 at 12:45 pm

    What a moving and thought-provoking post!

    Thank you, Kathryn, and best of luck in your struggle.

  • LINDA says: February 25, 2013 at 12:35 pm

    My question is, are you seeing improvement? I read about so many people who have done the various treatments and spent thousands of dollars for years and are still sick. I was my sickest in 2007 and felt as if I got better with oral abx and lots of herbals. But, I have not felt great for a while now. A recent lyme test showed band 41 still positive. I wish I had the money to do another IgeneX test to compare with mine from 2007. I recently found out I have a double MTHFR mutation on top of the fabry disease that I was born with. So, I am in the same boat as Gretchen wondering what is causing me to feel lousy? Boy does this get old.
    Linda

    • kathryn maroun says: March 5, 2013 at 10:10 am

      Good morning Linda
      It sure does get old. I’m sorry to hear that you continue to tread water. I think our best hope is research based. The treatment today is only “ok “and not the best. The call this the rich man disease for a reason. I feel strongly that it is important to keep at it. We don’t have the luxury of not treating. This is not medical advice but just my observation.
      I tested for the MTHFR mutation and I was lucky not to have it but I do have immune system issues that prevent me from kicking illnesses on my own.
      So many possible reasons why you continue to feel unwell. This link will explain it best. http://www.youtube.com/watch?v=RTiWfyrNBwA
      Even falling on your face is moving forward. Keep up the good fight. Better times ahead.

  • Peter Tilton Jr. says: February 25, 2013 at 10:52 am

    As so many doctors have become specialists with a narrow focus, I find it ironic when I see a doctor and they ask what’s wrong with me. Hey Doc-that’s why I’m paying you! If you can find a family doctor with an open mind and who actually looks at your history you are far ahead of what’s normal today. If you don’t like how you are getting along with your doctor, fire that one and get another if possible. Good medicine is an art as well as a science, and some physicians have figured out that balance while some just paint by the numbers. As you point out, the system needs to be changed in many places, too. I really hope you turn a corner for the best soon, Fly Slinger. Your funny hats are missed along the river and the fish have been asking for you.

    • kathryn maroun says: March 5, 2013 at 10:08 am

      Peter you are bang on.
      A Doc said to me that you never want to be interesting to your Doctor….then he finished by saying that he found my case interesting. lol
      The other thing that you never want to hear from your Doctor is that he missed the day in Med school when the studied the paragraph on Tick born illnesses. Yes I said paragraph. I could write a book on the subject.
      Best
      Kathryn

  • Gretchen says: February 25, 2013 at 9:37 am

    Kathryn – I can certainly empathize with your frustration. II admire your determination to help facilitate change. I survived a particularly nasty bout of Rocky Mountain Spotted fever, only because I was already under the care of an outstanding nueroimmunologist, that was active in research.You can imagine how fraught with difficulties treating this was been given that I have a compromised immune system and neurological deficits from MS. With each new host of neuro symptoms now the question is, is from the MS or is it from the RMSF. So many physicians fail to properly diagnose and treat vector borne illnesses in a timely fashion. This must be changed. My prayers for you.

    • kathryn maroun says: February 25, 2013 at 10:07 am

      Gretchen
      Bless you in your battle. Thank you for sending support by posting a comment. You are bang on when you say that you survived because of the care of a Doctor who was litterate in the care of bug born illness. You have a very complex case and you would have suffered badly.The public is in the dark about such things. This needs to change. I’m so worried for my friends who fish and hunt. The days are long gone when the bite of a bug is a non event.

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