Lyme community loses a hero and friend
Leslie Rae Wermers, 7/7/1967 – 11/2/2008
The Lyme community has lost an important hero and friend–and so did I. Leslie Wermers, 41, died from heart failure in her sleep on November 2nd. It’s hard to imagine Leslie’s heart giving out, because for anyone who knew her she was all heart. A dear friend to so many and a tireless worker on behalf of the Minnesota and national Lyme communities, Leslie gave everything she had to help others who were sick. And everything she had was an abundant reserve of love and support–even as her own health waned.
The first time I heard from Leslie was in an email several years ago during production of UNDER OUR SKIN. She said that watching the film trailer changed her life:
“You see, Andy, I had no will to live. I was so sick, with no answers and just wanted it to end. That was until I saw the trailer. You have given me so much joy….Your documentary saved my life.”
Since then, Leslie became our greatest film fan and an activist whose sole goal was to help others avoid a fate she couldn’t avoid herself. I finally met Leslie at the Iowa Lyme memorial which we covered for our film. Though she herself drove more than four hours to be there, she gave our crew a hero’s welcome. Here is a video compilation of our interview with Leslie. Her words are humbling and prophetic.
And here is Leslie as she appears in an excerpt from UNDER OUR SKIN.
Later, Leslie and her sister Tracie (who also has Lyme and worked with Leslie on behalf of Lyme sufferers) sent us a picture of their version of the film’s widely-used image of Mandy in the pool. Leslie wrote: “Tracie and I thought that this photo represents our passion to continue to help you finish this project, that will save so many lives.”
Beyond her mission of service, Leslie’s sense of humor and gusto were legendary. Over the next few years hers was a familiar voice in our office–calling regularly to tell us how much she appreciated our work, how we were her “angels,” and how much she loved us. But her love didn’t stop here. It was extended to so many people nationwide who were sick and struggling in solitude with the disease. Leslie and Tracie founded the patients’ advocacy group Minnesota Lymefighters Advocacy. Suffering from Lyme induced insomnia, she had late-night conversations with people across the country–many of whom she had never met–offering them words of encouragement, hope and affection. It is a testament to her profound affect on so many and the deep emptiness she leaves that so many have been moved by her passing, never having even met her.
Leslie’s death leaves a deep hole in my heart and in so many others, including her loving family and partner, Paula. Her indomitable spirit and passion for life were equaled only by her anger at the injustices wrought by Lyme ignorance and her dedication to help heal. May this be a lesson–Leslie’s legacy–for all of us.
Andy Abrahams Wilson
Producer/Director
UNDER OUR SKIN
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My condolences to Tracie on losing her sister and to the rest of their family. We’ve lost another great person to this horrible disease.
Andy, thanks for helping to try and stop the madness going on in mainstream medicine. And madness can = murder.
Tracie–
My heart goes out to you-…
I remember all the encouraging letters and photos you and Leslie would send telling to keep up the work with the PHA and that it was helping get the word out…especially on the days I wondered if it was helping at all– your notes would show up just when I needed the encouragement the most.
I am heart-sick for your personal loss and the loss to the whole Lyme community– Leslie was such a vibrant FIGHTER and an inspiration for us all…
She had such spirit about her!
There is a huge hole in the heart of the Lyme world over this loss. Please know we are mourning with you and keeping you close in our prayers as you grieve.
We love you Tracie!!
Dawn
I thank God for people like Leslie…I was fortunate to know her and to be able to call her my friend. We spoke nearly every other day…she was a wonderful person who always made me laugh and I miss her dearly…
Tracie and family,
Your sister, Leslie, was a beautiful lyme warrior. Her words were so full of love and compassion for other lyme patients. I am so sorry for your loss, and I know you will miss her beyond words. Thank you so much for sharing this video with the public.
Godspeed Leslie
Dear Tracie,
I am so sorry to hear about Leslie. Both you and Leslie helped me through my hardest time as I dealt with my lymes. You guys sent me amazing articles, literature and advice. You really helped me learn how to be pro-active in my fight. You have both helped so many people. My prayers and condolences go out to you and your family at this difficult time.
With sincere sympathy,
Gina
Though I did not know Leslie, her words reach out and touch me profoundly. I am certain that I am only one of so many that are experiencing the weight of this great loss.
My most heartfelt and sincere condolences to her friends and family and to the Lyme Community at large.
May time hold for each of you the comfort of memories of how she touched not only you who knew and loved her, but also of how she reached with words and deeds those of us miles away.
Sincerely,
Melanie Reber
The National Lyme Disease Memorial Park Project
Tracy,
My prayers are with you and your family.
As a Lyme Disease sufferer, I feel part of the family in this difficult journey of recovery.
Leslie left behind a path of love, courage and hope in every person she touched.
God bless you, Tracy.
Ruby S
My heart is broken, along with so many others, over Leslie’s passing. She was such a bright light in the darkness of Lyme disease. She gave hope and help to so many even when she was suffering.
Let us honor Leslie by doing all we can to help others who are suffering.
My thoughts and prayers are with her family.
I was moved by the videos Leslie made, I wish I could have met her. I have had Lyme Disease since I was 17. I am now 32 and disabled. I have passed this onto all three of my children since I have been misdiagnosed and never new I was infected. I have been treated along with my children for just over a year now and little by little we see improvements but I will never be the same. I had the classic case of Lyme Disease but had never evne heard of this disease. I had a tick, bull’s eye rash, Bell’s Palsey and developed a vocal tremor called spasmodic dysphonia. I hope one day I can turn my anger into something worthwhile like Leslie was able to do. I admire her. Please accept my deepst condolences.
Leslie’s battle and determination will give others hope and strength to fight this disease. She is a shining light for all of us.
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It saved my life when I had MERSA Staph. I am a shareholder in the company due to the life saving results I experienced from the product. If you want more info on the product please contact me at scwl@cox.net.
May God Bless you all in your fight against Lyme.
Sherry Lund
Traci………You and Leslie were a God send to me. I talked with both of you and received so much encouragement when I needed it most. I know Leslie will be missed by so many. You will be in my prayers.
I never met Leslie but I feel lucky to have seen a glimpse of her life through the powerful memorial video you made. She is an inspiration to all people suffering with this disease.
My heart goes out to her family and friends.
The Lyme community will miss her but I know she will still be working for us from the other side.
Leslie was the love of my life, my soul mate, and best friend!!! I watched day in and day out what Leslie went through, and I will tell you, that all she wanted to do is make sure no one else suffered as she did! I will make it my mission to help you all fight this disease and carry on Leslie’s legacy…..
As I sat there watching the Under Our Skin screening in NY in April….
It was a very emotional night for my husband and I…I’ve been battling Lyme for almost 20 years…
The stories in the film were very moving and at times I had to hold back the “ugly face” cry…
when Leslie spoke in the film it was one of those moments for me….
I never met her…. I didn’t need to…as she spoke I could feel her emotions….and my tears just ran down my face….
she was one of us……I felt the closeness…
I am so thankful she was able to be a part of the film.. her words were so powerful and I could feel her strength…
For those who were close to her I am so sorry for your loss….
…and I am so sorry for our Lyme Community we have lost one of our own…
she will be remembered……
I did not know Leslie, but I did know Lyme Disease. how she drove 4 hours to be there when she was sick I do not know. I could not have done that. I am well now, and live life in an incredible way due to the treatment I had. After being bed ridden for almost 3 years, told I had numerous other illnesses with no relief, I found a Dr. who not only saved my life but gave it BACK to me. I know what it is like to pray to die daily and the idea of walking 6 feet to the bathroom sometimes seemed like more than I could bear. Just like Leslie said. My prayers go out to her family and friends. Thank you for the movie, for putting our stories out there for the world to see – so we can not be ignored anymore. Have you noticed in the last TWO YEARS the media is starting to talk about Lyme more and more! I think Under Our Skin has a lot to do with that! Thanks from Overland Park, KS where there are lots of people with Lyme but we are “Not a Lyme State.”
Thank you Leslie,
I’m so grateful for the words spoken by Leslie. I believe they will make a huge impact on opening the eyes of the medical community to this torcherous disease. Leslie was a true saint. Dear God, please comfort this family on their loss.
Shauna
I unfortunately did not have the pleasure of knowing Leslie.
I have though had the great pleasure of meeting Tracy. I have been going from doctor to doctor for the past 7 years, trying to figure out what was wrong with me. By chance when I had been at Mayo clinic I found Leslie and Tracy’s website. I had a very difficult time at mayo . I had lesions on my brain, my mussels were deteriorating and my bones they said were of someone in there 70’s, I’m 35.
I called Tracy after the doctors told me I was fine. They (the Mayo Clinic) did not have an answer for all of my problems. They told me “it is all in your head”. You are fine and you are just looking for attention from your family. I called and spoke with Tracy, I had never had anyone listen to me the way she did. It was amazing that someone Else knew exactly how I felt, and directed me to the place that would help me!!
The work these women have done is the work of angles. My heart breaks for Tracy, one of the most compassionate people I have ever Known. Leslie and Tracy have done gods work. My heart and my prayers go out to Tracy and her family. This is a monumental loss to all of us suffering from Lyme. Thank you Leslie for speaking up for all that could not!
God Bless you Tracy and your Family
Leslie is in good hands and out of suffering
Cristin Guenther
This loss is so tragic, it has been keeping me up at night. I met Leslie just days before her death at the 2008 ILADS conference. Her spirit touched me even then.
Leslie and Tracie (Leslie’s sister) are awesome. They are the brightest and truest spirits in the Lyme community that I have ever met. When I first met Tracie and Leslie, I kept waiting for their first-impression angelic qualities to wear off into real life relationship that comes when you actually “know someone well.” But the better I got to know them, the more conversations I had, and the more their true character was revealed……the clearer it became that no – this was not just a first impression and no, this was not just a “show” – this was who they truly were, out there on the front lines, staying up late to help people, spending hours on the phone with desperate patients. Their behavior should be a model for all of us.
In my line of work I get phone calls from way too many people but whenever Leslie would call me, my face would light up and it would be as if time would stand still. I could just tell that there were no pretenses, just caring affection and the desire to help.
May the Lord Jesus Christ bless and keep you Leslie and we will never forget your kindness, passion and spirit which reached across thousands of miles as if it were next door. -Bryan Rosner
A TRIBUTE TO LESLIE
Cry if you must,
But not for me,
I’m free,
There is no death.
What did I learn?
I learned that the love
that is in me,
and the love
that is in you
is a forever love.
Nothing can separate
those who love,
Not even physical death.
Laurianne Anctil
A TRIBUTE TO LESLIE – Cry if you must, but not for me, I’m free.
What did I learn while I was on earth? The love that is in me, and the love that is in you is a forever love. Nothing can separate those who love, not even physical death. Laurianne Anctil
I send love and prayers to those greiveing over Leslie right now. Maybe this will help to open doctor’s eyes and show them that this is a real disease and it does destroy the lives of not only those suffering, but also those that support the sufferer.
Another beautiful soul transcends time and space at the bite of a little bug. Her words, action, and passion towards this epidemic disease were and are still inspiring.
I think our gratitude would be best expressed by taking action to spread the Lyme awareness and find a treatment beyond the 20, 30, or 40 days worth of doxycycline that leaves the disease intact. I sense a solution by way of ayurvedic treatments, but I’m sure at this point that much more research is needed and we’re gonna have to fight to put it on the market once we find it.
I for one, have joined The Zeitgeist Movement as a means of fighting the war on the corporations and institutions that are killing and enslaving us all. Their time’s up, and our time is running out.
I didn’t know Leslie on a personal level, only in the documentary, “Under Our Skin”. I’m greatly sorry for your loss and it sadden’s me that the Lyme Community has lost another one to this horrible disease. My thoughts and prayers are with you.
are there any words strong enough to express the sorrow i feel for the loss of leslie? i think not this nightmare must have an end and leslie’s tireless work will surely be helpful in finding that end leslie is one of the wounded healers may God keep her and bless the work she has done
to leslie’s family and friends, please know that she will always be remembered appreciated and missed even by those who did not know her personally
most sincerely,
kim
kim
My thoughts and prayers are with you Tracie and your family. I never met Leslie but I am sure the way she touched peoples lives will stay with them always. Peace to all who called Leslie friend.
What an utter tragedy. Guess it’s always the soldiers on the front lines that get hit hardest. Leslie, you’re highly valued spirit will be missed. At least there’s no more pain for you now.
“We are more than containers for Lyme.”
We don’t have to know you, to love you – you helped so many through your own suffering. Your life has inspired me to do more to help educate our physicians on LD and how they can HELP all of us, who through suffering have become a family. My condolences go out to Tracie, and family.
Teri
Lewes, DE
i am sorry to have lost this hero for lyme.
we must continue to work so this does not happen again.
derek
My heart goes out to Leslie’s family and friends. I only knew her through Under Our Skin when with her words she immediately connected with us all. This disease affects everyone in a family even if only one is infected. I send my condolences to her sister and the rest of her family and the hope they can focus on the joy she brought them more than the loss they suffer now.
Leslie’s words in Under Our Skin are so concise, direct and spot on. We owe her a debt of gratitude to her to have still had the tenacity and presence of mind, even in the depths of her own illness, to be a voice for us when she formulated such a brilliant statement about the tragedy of blaming the patient and refusing to treat, and the subsequent chronic and fatal outcomes of that practice.
With eloquence and grace Leslie spoke for all of us. Today is a sad day, but her messages will remain and be remembered and repeated. Like a message in a bottle, her plea for change in the guidelines policy and treatment practices remains crystal clear.
Because of Leslie and other s like her, our voices and messages are being heard around the world through Under Our Skin. These many faces and voices of Lyme will one day help propel our medical care for Lyme Disease from where it is now, to a more just and caring system, where people with the disease won’t have to suffer and die as Leslie did.
In the weeks and months ahead, Leslie’s message will travel the map through the documentary as it makes it’s way to the hearts and minds across America.
In that way, Leslie still lives on, and is still fighting for all of us, even after she has been taken from the world too soon.
Be warmed by her memory, contributions and spirit.
Mimi
Leslie was a beloved friend and an incredible Lyme Warrior. We spoke the day before she passed, making plans for her to come and visit in January.
Our hearts go out to Tracie and all of Les’ incredible extended family…she will stay our hero, always.
Love you pumpkin…and feel you close.
Lorraine xoxo
Sincere condolences to Leslie’s sister, Tracie and their family. Although I never met Leslie personally, we had shared many phone conversations. A little over a month ago when I last spoke to Leslie she encouraged me, on one of my down days, to never give up and just keep doing what our organization was doing. An amazing woman and friend who will not be forgotten.
WOW! What a tremendous human being. We’ve lost an amazing avocate and friend! She will be sorely missed by ALL of us.
Listening to her interview I found myself brought to tears not only for her but that I could relate totally to her plight for life.
You will be remembered Leslie for what you have done for us and for the wonderful person you are!
Please watch over us!!!!!!
I would still have no idea that I was dealing with late-stage Lyme if it wasn’t for Tracie and Leslie. It took me 15 years of slogging through hell to, through the grace of God, be referred to Lymefighters… “Call this woman in Minnesota, Tracie – she’ll help you”. It is only because of this call that I was led to the resources – this film and one of the LLMD’s in it – so that I could finally get the help I have been seeking. Tracie has become one of my most treasured friends. I am indebted to her forever. And through Tracie, I came to know Leslie… No one had any idea she was close to death.
Leslie’s death is not in vain – it is creating ripples that will lead to huge waves. She has shown the world how Lyme can be fatal – it’s not just a little tick bite that goes away with 21 days of antibiotics. Let us all work together in memory of Leslie and the others that have needlessly died, to continue to raise public awareness on this issue and all that surround it – politics, insurance coverage, disability and medical benefits, doctors that are being witch-hunted. Most of all, let us demand accurate standard testing for Lyme and co-infections. An accurate test exists for dogs, so there should at least be the same for us or equal.
May you rest in peace, Leslie… We’ll miss you but know you’re with us. We’ll surround Tracie with lots of love and make sure she gets through this time with all of the support she needs.
You are free now… fly with the angels.
May her spirit remain above us all for many years to come – reminding us each and every day of why we continue to fight!
Leslie’s passing is heartbreaking…..
I am one who is still struggling to be heard. I will not give up… Leslie has left a powerful legacy behind. Her passing is wounding, but I am encouraged by her strength.
Leslie obviously made a difference. We should all be inspired to help continue her efforts. We need to pick up the baton, and keep moving forward in Leslie’s honor. In honor of all those who have lost the battle against this awful disease. In honor of all those who continue to be bound by it’s clutches. The voice of Lyme suffers must be heard, and Leslie’s passing must not be in vain.
My prayers are with the family also. (((hugs)))
Leslie was a true hero in the ongoing fight against Lyme. My heart goes out to her sister Tracie. I only talked with Leslie once on the phone and could tell her passion about fighting this disease. Thank you Leslie. God Bless. I know you are one of the Angels now. Jill Kuschel MLASG
I am somewhat new to the Lyme community, only being diagnosed in mid-August and seeing the documentary in late September in Raleigh, NC. I continue to be shocked and saddened at what Lyme does to our lives..even causing some to ultimately lose theirs. I did not know Leslie but identify closely with her determination to “take back her life” through a mission to help others, something I came to long ago..I post a favorite poem here by Naomi Shihab Nye as a tribute to the “kindness” Leslie apparently showed to others. To her sister, my sincerest condolences.
Angie Frye
Raleigh, NC
Kindness
Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.
Naomi Shihab Nye
from The Words Under the Words: Selected Poems
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My Prayers are with your family Tracie my heart goes out to you. I did not have the pleasure of connecting with Leslie but in spirit through her enormous efforts with all of us in the Lyme Community I felt a connection and such a terrible loss for all of us but especially to those that knew Leslie so well…PEACE
&
GODSPEED
More than ever, I feel motivated to keep reaching out. Leslie’s words echo many things I myself have said. The difference is that I am very very fortunate to have recovered at least a part of my life, and to have the opportunity to share it. I ache for her, for her foreknowledge and for the loss of a once dynamic person to her family, and to us all.
I’ll be going to see “Under Our Skin” next week. It will be an even more poignant showing now.
How many more? How many more?
I did not know Leslie, it saddens and scares me terribly. I’ve never heard of anyone dying from Lyme disease. My condolences to her friends and family.
This was truly sad news. I got my official Lyme diagnosis yesterday. I can only hope that Leslie’s activism will live on with the rest of us and that we can all unite to fight this very political disease to carry on the legacy of those who cannot fight anymore.
May you have Peace, Love, and Comfort at this time of personal loss. I am still deeply inspired by Leslie’s words and “being” in UNDER OUR SKIN, I have a heavy heart for the tragic loss of a fellow Lyme Warrior.
Although I did not know Leslie, I am saddened to lose another person to Lyme disease, especially someone who was so determined to help others. Her words ring true for me, as I’m sure they do for all the other lyme sufferers. When will the medical community take this disease seriously?
My condolences to her friends and family.
I met Leslie at the 2008 conference in SF, and she was an inspiration at every stage of the conference. Wherever I looked, there was Leslie–helping to get the conference materials together, helping to promote the film, helping me to buy multiple copies to take to the various sites that I help staff, to spread the word about what is really happening with Lyme and related infections. I didn’t realize until seeing the film that she is in one of the most poignant and powerful scenes. I love the memory of her smile, when I joked with her that she hadn’t told me she was a movie star!
She radiated energy and positivity, which makes her death so much more difficult to comprehend. Her death could hardly illustrate more vividly what a treacherous foe we face in these illnesses. Her efforts made important headway in exposing their danger, and indeed, eventually, “we shall overcome”!
The last interaction I had with Leslie was when she helped me to track down Dr. Humphries so that I could purchase one of her wonderful paintings. It depicts the caduceus with rainbow-colored wings, ascending toward the sun into heaven, shaped like the statue of the winged Nike of Samothrace. Around her waist are twined two red spirochete “snakes”, which, rather than hindering her, are helping to lift her toward enlightenment and deliverance.
I’m now dedicating that painting to Leslie’s memory, and will think of it whenever I see it as I awaken each morning. That will inspire me all the more to continue to pass on the knowledge that she and the community have worked so hard to bring to light. I have the opportunity to show the film at a grand rounds at my hospital, and have also loaned copies to colleagues–some are beginning to see the light, others will take more convincing. In Leslie’s memory, I will continue the fight with renewed vigor.
My condolences and prayers go to Leslie’s family, partner and friends. While I had been looking forward to seeing her at future events, I will see to it that she will appear at many future events in the wonderful movie she helped bring to fruition. I feel blessed by having had the opportunity to meet her, and share in the sorrow of those who miss her in this world,
Amy Withington MD
Tracie, Paula and family,
I truly believe Leslie’s death, while tragic, shocking and devastating right now, will not be in vain. I know the high purpose will be in the public nature of her passing, in and out of the lyme community… and the changes which that will bring.
I don’t know any of you, but you’ve made a difference to me.
May angels support each of you as her loved ones healing the loss.
Blessings,
Sharon
Just wanted to add a “PS”, as an email from a family member just reminded me of a wonderful line from the musical “Wicked”, which applies so well to Leslie:
“Because I knew you
I have been changed for good”…..
For Tracie, in memory of Leslie,
Today was the day I was to call you, but then I saw the email and cried instead. Please accept my email hugs and condolences.
The four days of Lyme Disease meetings in San Francisco last month changed my life forever. There was a feeling of inspiration, safety and comfort being in the presence of so many kind, gentle, and understanding people who have suffered because of Lyme Disease and who treat those who are ill with Lyme. Being surrounded by people who understand that that if “it is all in your head”, the problem is what the Lyme spirochetes in the brain and elsewhere are doing, not just our imaginations. Your continued determination to help others and insist on timely and appropriate medical care for all is an inspiration for those of us who believe that no others should have to share the suffering. The compassion and love you both have shared with others will be with us all as we continue our efforts to seek answers and bring changes to the kind and quality of health care and education available related to the growing Lyme Disease epidemic. Leslie’s words here and in Under Our Skin brought tears today and will each time I see the movie. What a privilege to have met you! Thank you for sharing love and inspiration with so many.
Leslie hasn’t died. She has just left us in this one physical lifetime here, which is something we all will eventually be doing soon, or sooner than we think. Nothing sad here, or at least it needn’t quite be.
Cry many tears of joy now for Leslie’s beautiful soul, and then pray many prayers of hope for her soul’s journey soon.
This Life is short enough here on earth, and it seems that Leslie has accomplished quite a bit in such a short time too, and that which she has created here and left behind her will grow on and remain forever in the hearts and minds of all who have come to know and love her.
I will never get over losing Leslie. This was a horrible, inhumane death. The Medical Community is to blame.
My condolences.
How sad that once again we lose a patient to Lyme disease, and for what? The tears I have for her and others like her who needlessly died.
How blessed I am not to be one of those who are still suffering a slow horribly painful death, thanks to Dr. Murakami, a great doctor who was shut down by our College of Physicians and Surgeons.
Is the College of Physicians and Surgeons as well as our politicians and other health experts supposed to be looking out for our best interest? It would be such a huge victory to have them all be held accountable for such “murders” as this.
May you finally have rest and peace Leslie, your loss will not be forgotten by those of us who appreciate all that you did.
Leslie’s death was preventable! None of us should have ever gotten into late stage Lyme…Or passed it on to our children….
When I heard Tracie crying after she told me Leslie pass on, it absolutely devastated me to hear her. I was and am so angry! It too, has kept me up & crying for days…for so many reasons!
But she wasn’t suppose to leave…This wasn’t suppose to happen to any of us! EVER!
Leslie spoke it so well for all of us! So poetic & beautiful!
Rest well & pain free, Warrior Woman!
Lots of Lakota Love,
Tara & Horse
Dear Tracy and Family, I am so, so sorry that you lost your sister. Have never met either of you, but shed tears for your loss.
I have this disease and now live in Arizona. I’ve met dozens of others in the few months since diagnosis. None were infected in this state that I know of. Some come to my home to use our Rife and we pray.
I’ve been thinking about HOW to create an group here in AZ and get some word out to those in this State. Some days I don’t think clearly, but I’ll get there.
It was wonderful to share your sisters words and picture. So much love there.
I wish you a journey to better health and wish your sister peace.
DebGrace in Gilbert, Arizona
[...] Leslie (along with her sister Tracie) is a hero who founded the Minnesota Lyme Fighters Advocacy Group. After Leslie passed away a few days ago I feel compelled to share some information about her amazing life. The best way to learn about her tremendous impact is by looking at this page, with a few videos of Leslie: http://underourskin.com/blog/?p=67. [...]
It’s a shame about Leslie and others that have been disabled and have passed away from Lyme Disease. I feel that a lot of progress has been made to get the world to acknowledge the disease, and Under Our Skin is a huge step forward but no progress has been made in effectively keeping people well. God Bless all of the people that have worked so hard to get the recognition of the existence of chronic Lyme Disease to the public.
Karl Fisher
Middleburg VA.
http://www.lyme-help.com
I was in shock when I heard the news, My prayers instantly went out for leslie and Tracie and her family.
I think a part of all the people who fight this disease
has died. What do we do to get this recognized for what it is? I had spoken to Leslie a few times to get information to fight to get some disability benefits.
She had a passion amidst her fraility. We must all continue to educate others we come in contact with to continue her passion. I and my husband have lyme at different degrees of stages. Fighting every battle that I’m certain she did. My hope is waning for a recovery for myself as my symptoms continue to escalate
but I hold out hope for my husband. We are using essentials Oils both internally and externally for symptom control and relief along with some drugs. This has been a God send for now. WE have been sharing information with anyone who will listen. Tracie was among the first person who understood my pain and struggles. For this I will be forever grateful to her.
I continue to pray for this organization and her efforts
and hope for a better day. God Bless all of you and May God sustain us in this battle. Leslie is now free!
She will always remain in our minds and heart.
Love Deb
I have no words…..she is in my thoughts.
When you come to the edge of all the light you know, anda re about to step off into the darkness of the unknown, faith is knowing one of two things will happen: There will be something solid to stand on or you will be taught how to fly. [Barbara J. Winters]
Angel on earth… Leslie now has wings.
Sincere sympathy to all those that knew her. So long as memories live so does she.
Ever since I heard the news I have been walking in a fog of sadness and grief for all that suffer needlessly from Lyme Disease, especially those that have lost the battle as Leslie has.
My Heart aches for Tracie and her family and I long to reach out to them to offer some hope, but my own struggle with Lyme breeds only doubt and fear within me in this moment of great sadness.
The Lyme Awareness Art Project (LAAP) will dedicate the Brattleboro, VT screening of Under Our Skin to Leslie as the poster above mentioned. Also if anyone would like to submit poetry or art work to LAAP in memory of Leslie we will post it on the websites Lyme art & poetry gallery as a memorial.
Leslie will not be forgotten, none of us will allow that!
Be Well,
Linda Marcille
LAAP
Hey,I new Leslie from a support group,MDJUNCTION.COM,She was an amazing woman and great friend i got a mess from her about a month ago,and then i heard this my heart is broken,I am soooooo sorry for her familys loss,She was an angel here 2 the lyme world and i now she is an angel watching over us,JENN
I met Leslie on the phone in July 07. She spent hours talking to me. She explained to me what I was facing with a new diagnosis of Lyme disease. I was not diagnosed until I suddenly became disabled. I was in bed all the time and had difficulty walking, talking, and thinking.
I had been hurt deeply and traumatised by the medical profession. She was the first person to explain to me how Lyme disease affects the body. I could not understand what was happening to me. She calmed me down, and made me believe that I was going to live through this. I didn’t think it was possible. The muscles in my body were drawing up on the left side, my breathing would stop for way too long, and I felt the symptoms of impending stroke and paralysis.
I was alone most of the time. The home health care nurses didn’t understand my symptoms. The ER doctors wouldn’t help me. The local hospital refused to hospitalize me after they realized I was suffering from Lyme disease. The hospital even refused to allow me to be seen by their doctors for primary care. Later, my insurance company refused to pay for IV antibiotics longer than thirty days.
Leslie calmed me down. She helped me to dream about using my life long skills as a nurse to help others with Lyme disease. She helped me to keep my mind focused on having a future. She and Tracie worked together to help me find resources that were needed for my family and our community in Kansas.
Through both Leslie and Tracie, books were donated to our community by Brian Rosner. Once Tracie and Leslie sent a package with wonderful gifts of encouragment, like angels for each day of the week.
I am very sad and shocked that Leslie has left us. I didn’t think that would happen. It was so unexpected. My heart is with you, Tracie. I wish I were there to give you a Big Hug, and much love.
Peggy (Peninah) Blumhagen
Ottawa, Kansas
Tracie,
I grieve for you and the enitre lyme communtiy as we have truly lost one of our BEST fighters. I know she is in heaven as we can all see she was an angel on Earth. Leslie was a true hero and you should be proud of what you and her have done for all of us! God Bless you and your family during this extremelt tragic time.
Gretchen P
I do not even know where to begin, except to express my heartfelt condolences to Paula, Jayde and the rest of Leslie’s family. I met Leslie in 2000 and we instantly became fast friends. She had such a generous heart and spirit and she was always so positive. Though we lost touch several years ago, we were fortunate to reconnect this summer. I am so grateful to have had the opportunity to see her and talk with her again and to reassure her that great friendships never die. Sadly, I had no idea that she would be taken so quickly. Thankfully, I am one who believes that those we care about never really leave us completely and I have every faith that her spirit remains to watch over those she held dear. Paula – I am so grateful that Leslie found you. She was so happy when I saw her and she proudly declared how lucky she was to have you in her life and she wanted me to know that you met all her needs. Please know you are in our thoughts and prayers as you endure this difficult time and we hope your memories of your time together bring you comfort. We trust that Leslie’s love and warmth will find a way to overcome the bounds of the physical world to help soothe your sadness. We hope you will be watchful for those moments and signs that could only come from her and allow yourself to smile as you grieve because you know she is still with you. God bless. Tami & Denise
It’s time to sue the hell out the doctors, as all they care about is money. It’s too bad they can’t do hard time for murder, instead of paying in cash for the murder they committed through their malpractice and intentional neglect.
Dear Tracie and Paula,
I hope you can find some comfort in this…
Death Is Nothing At All
by Henry Scott Holland (1847-1918)
Death is nothing at all.
I have only slipped away into the next room,
I am I and you are you,
Whatever we were to each other, that we still are.
Call me by my old familiar name,
Speak to me in the easy way which you always used,
Put no difference in your tone,
Wear no forced air of solemnity or sorrow,
Laugh as we always laughed,
At the little jokes we enjoyed together.
Let my name be ever the household word that it always was.
Let it be spoken without effect,
Without the trace of a shadow on it.
Life means all that it ever meant,
It is the same that it ever was.
There is unbroken continuity.
Why should I be out of mind,
Because I am out of sight?
I am waiting for you, for an interval,
Somewhere very near,
Just around the corner, all is well.
Tracy,
I’m so sorry to hear about the loss of your sister. I know you two were very close. We appreciate you and your sister for all that you have done to help us. You two will never be forgotten. Remember, you will see your sister again. You will see Leslie in heaven with the Lord Jesus Christ were there is no pain. I’m sure she’s doing the happy dance right now. You and your family our in our daily thoughts and prayers. God blessing’s to you and your family.
*hugs*
Charlen and Barb
Dear Tracy; Our condolences at the death of Leslie. We understand how difficult a fight she fought and unfortunately lost. We too are facing a similar problem with my son who has been dealing with neurolyme disease for ten years. We have taken him to many physicians in all special fields. We finally flew him to Europe and was treated by an American Physician who saved his life. He went in a wheel chair and arrived home 18 days later without all symptoms, but six months later relapsed with neuropathy, which was nothing compared to how he was when he began treatment. He still is dealing with some issues, but the physicians are not willing to treat any further. Only God who has taken Leslie home knows how she was suffering and he saved her from this world of greed and apathy from many physicians who could not care less and the system who continues to ignor the suffering of many. My son has suffered as I have never witnessed suffering from another illness and we know that we were fortunate to find this physician who saved his life, however he is not cured and I pray to God that somehow a cure or something for remission will be available some day soon, however I do not have the confidence in the medical system any longer. Leslie is in God’s hands in heaven where she is safe and no longer in pain. Someday you will see her again, but know, without a doubt that she is now without suffering and we all hope for the saving grace of God’s mercy to receive the blessing of believing in a God who does not inflict harm, and will save his children from the evil that exists in a country with a government who are not concerned for anyone but themselves. One day they will face the judgement for their behavior and lack of compassion for their fellow human being. We must continue to pray to a loving God who has promised to never leave us. God Bless Leslie for all she did to help Lyme victims even while ill. She surely is one of God’s angels. Love and Prayers, Ann Ciriello
I have just come to learn about Leslie and her passing just recently. I am so so sorry for her partner, family, friends and all those people whose lives she touched and made richer. Reading everything that was said about her as a person, a fighter, a warrior and a Lyme suffer and crusader has really moved me deeply.
I too have had Lyme disease for about 40 years now and only diagnosed 5 years ago. The frustration for me is the misunderstanding of the disease and the unwillingness of the drs and ins. companies to treat it and friends, family and acuaintances who do not understand it and how serious it is. I will keep on working to change this myself as much as I can in Leslie’s spirit and memory.
Dear Tracie & Paula,
I met Leslie at the recent SF conference and found her to be just awesome- warm, genuine, delightful, smart. You were and are blessed to have her in your life as you did and I am so sorry you lost her as you did. I am so glad she was and is in Under OUr Skin,
her presence shines from the screen. I wish you both strength and warm thoughts-
Sincerely,
Sarah O.
Aptos, CA
Earlier tonight I went to the Lymefighters web site to get some information for a friend. As the home page came up I saw In Memory of Leslie, and I thought there had to be a mistake! Unfortunately for us all it wasn’t a mistake. Through tears I read the tributes to Leslie and the well wishes to her family, and I still can’t believe she’s gone.
On September 28, 2008 I recieved a voicemail from Leslie offering to help me find all the Lyme info I needed. I was actually surprised to be getting a call from anyone with Lyme info, being I had run into so many brick walls. When I called her back, I had this feeling as if I were talking to a long lost friend…even though we had never met. We talked for hours about everything from Lyme disease and my remission from Hepatits C, to her family, my family and our “kids” (her 2 dogs and my 5 cats). I was lucky enough to have a few more phone calls like that with her, and felt blessed when she said she considered me a friend. I told her that God put her in my life for a reason, I only wish he hadn’t taken her so soon. She really helped my mom and I to understand so much about Lyme and what we might be facing. She said from the begining “I am by your side every step of the way”, and it was so comforting to know we weren’t alone. I may have only known her for a short time, but she has made a lasting impression on my heart!
To Tracie,Paula,Jayde and the rest of Leslie’s family and friends, you are in my thoughts and prayers.
God Bless,
Amy
Quakertown,PA
This is a song by Brad Paisley with Dolly Parton. When my Uncle passed away the lyrics comforted me, I’m hoping these lyrics may comfort others too.
Amy
Quakertown,PA
When I Get Where I’m Going (Brad Paisley with Dolly Parton)
When I get where I’m going
On the far side of the sky
The first thing that I’m gonna do
Is spread my wings and fly
I’m gonna land beside a lion
And run my fingers through his mane
Or I might find out what it’s like
To ride a drop of rain
Yeah when I get where I’m going
There’ll be only happy tears
I will shed the sins and struggles
I have carried all these years
And I’ll leave my heart wide open
I will love and have no fear
Yeah when I get where I’m going
Don’t cry for me down here
I’m gonna walk with my grand daddy
And he’ll match me step for step
And I’ll tell him how I missed him
Every minute since he left
Then I’ll hug his neck
Yeah when I get where I’m going
There’ll be only happy tears
I will shed the sins and struggles
I have carried all these years
And I’ll leave my heart wide open
I will love and have no fear
Yeah when I get where I’m going
Don’t cry for me down here
So much pain and so much darkness
In this world we stumble through
All these questions I can’t answer
So much work to do
But when I get where I’m going
And I see my maker’s face
I’ll stand forever in the light
Of his amazing grace
Yeah when I get where I’m going
There’ll be only happy tears
Hallelujah
I will love and have no fear
When I get where I’m going
Yeah when I get where I’m going
I had a dream this morning about deflecting a basketball pass. I knocked everything off of my night stand. Then, when I went to work I got an email from one of my best friends from high school. She sent the link to this sight. I saw Leslie’s pic and saw that she had died and I got sick. I knew Leslie from Iowa. She played all the sports against me. In high school, out of the blue one night she called me and said I called you because I think you are nice and we were friends from then on. Leslie was so sweet.
Lee and Tracie….I guess I had that basketball dream for a reason this morning. God Bless you guys and I will always hold a special place in my heart for “Wermers”!
Dear Leslie –
Back a year ago you and your sister were the first ones to start sending me email and information on lyme disease – you have changed my life forever!! I wish I would of known you better – althow I know I will meet you in heaven. Your life has saved mine and my three girls – in your death I have become stronger in this fight – for myself, for my children, and for anyone who is ill or knows someone who is ill from this terrible disease – in your honor I will be working on learning as much as I can and I hope to be trained so I am go into school systems and teach everyone what lyme disease is and what are the symptoms – teachers and parents need this information and they do not have it – I didnt have it – maybe if I did years ago I would be so ill or my girls wouldnt be so ill – but like Leslie I will help others so they I pray do not have to suffer like her – I have lived 40 years and have always prayed for a calling in life (becides my family) and Leslie you have taught me what my calling it – for that I am eternaly gratfull and humbled to you.
Love you and see you when I get there
Diane Biel Beaver Dam, WI
My sympathies to Paula, Tracie, and everyone who knew and loved Leslie.
Leslie spent countless hours comforting me and giving me information. Unless it was an impossible day, she would always listen and support me and my family.
I still fight with doctors because informed patients are OBVIOUSLY hypochondriacs.
I am so sad we lost her. But also so happy she is no longer suffering. She is still with us all.
Brandy Hastings
Minneapolis, MN
Paula and Jayde, We spend our lives searching for the embodiment of a true spiritual friend. If one is lucky, they may attain only a handful of those precious friends in a lifetime. That is what Misty and I felt when we met your family. Leslie walked through the door of our home and the first thing she said as I reached out my hand is, “I don’t do handshakes, I give hugs!”. For the next few hours we were privileged to get to know Leslie. I’ll be honest, we didn’t know how to react to such pure kindness. It is a rarity in this world. And for those who didn’t get the chance to meet her, and I know this may sound strange, it is like walking with an angel for just a few moments. It was a gift. Her smile was beautiful and strong. Before long, everyone was standing around her with laughing smiles of their own. She left a lasting legacy of love, joy, and honesty. One of the last conversations we had was about her love for Jayde. We talked about the typical parenting stuff…school, which parent is tougher, etc. Basically it was all that stuff that parents talk about when they love their kids. And we could certainly see the love she had for her little girl. Abraham Lincoln once said, “And in the end, it’s not the years in your life that count. It’s the life in your years.” Leslie packed alot of life in a few short years. Thank you Paula for being our friend and sharing this special gift with us. Leslie was, simply put, beautiful. Our prayers and our love are with you and your family. Oh yeah, I hope you don’t mind, but this one is for Leslie…. GO LADY VOLS!!!
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hello my name is becky i have known leslie (les) for sometime now. she was my aunts life partner. i am glad that i had the privlidge of knowing her. she was a kind, loving person. it is a sad thing when god takes a loved one away, but to know that she is not suffering anymore is a joy. i have read many tributes to les. it wasn’t until i read them that i found out how many lifes she has touched and will continue to. my heart goes out to her family and to my aunt paula and her daughter jayde. her and les were very close and she was such a joy to have in our lives and family. WE WILL MISS YOU ALWAYS LESLIE!!!!!!!!
It was such a delight to meet Leslie at the ILADS conference. We met at the elevator and instantly recognized each other. Meeting and talking to Leslie was one of the biggest highlights of the conference for me. We have the same compassion in helping whoever asks and I found a very kindred spirit in both Leslie and Tracie. It seemed like we knew each other our whole lives and were naturally picking up where we left off…On October 19th we parted with a hug and a promise to talk in a few weeks but this was not to be. It was devastating blow to turn on my computer and see the loss of a friend. It has taken until now to adequately process Leslie’s death to even leave a reply…Leslie was a rare jewel of a person and it is with many tears as I write this to say she is greatly missed and very loved.
I am so sad for the loss of Leslie’s life. I vividly recall her from the film Under Our Skin. She seemed so brave and passionate about standing up for others, I had no idea she too had Chronic Lyme.
It’s time we find a cure for this horrid disease so that we don’t lose another Leslie.
I have Lyme, battling it 7+ yrs now. My story is the same as most others, so I wont say it here. The key is to say to all other Lymies.. we must all remember we carry the torch and we should all fight like there is no tomorrow. Leslie was a true “foot soldier” and each of us Lymies can accomplish some greater good too. We can march on. This disease and the pain it causes can make a coward out of anyone… but we must fight on. Honor Leslie and all those we know. Keep looking up and asking God to go before you. I am reminded what Phillippians 4:13 says, “I can do all things thru Christ Jesus who strengthens me.” Everyone, we have a part to play in this effort, whether sick or well. We can communicate. To my commrades who are battling the disease, remember, greater is He (Christ) that is in you that he that is in the world. We will win. I read the last chapter of the Bible… the good guys win. Hang in there and remember, the dawn is just around the corner when it is darkest. Under Our Skin and everyone communicating and alerting people to this disease will help. I march on… so should you. I pray we are all up to the challenge.
Isaac
If anyone wants to get effective advise on how to get better & stay better call me or go to my website to get my contact info.
http://www.lyme-help.com
I had chronic Lyme disease & now others and I have benefited from natural treatments.Traditional medicine only helps short term. Antibiotics are just temporary they almost never cure chronic lyme disease.
When you are at your whits end don’t give up give me a call so I can tell you how others and I have recovered.
I just found this site and the film “Under Our Skin”. This interview, in many ways could have been me. I wish I knew Leslie so that I could thank her for being out there for me. I so hope to get better to be one of the many who will carry on her fight – our fight. My condolences to all who love this woman. She has given me some hope and a desire to connect with others out there. I just now realized how alone I have been in my grief and struggle.
Peace and Health for us all!
Rayna
such a true story..
Tracie,
I just found out what happened. I cried. I am mourning with you.
Tracie, I talked to you on the phone after emails and you gave me your support.
Even though I never met either of you, I have been touched my you.
Thank you for all the work you and your sister have done.
To Leslie’s family
My heart goes out to all of you. She lived for a purpose and as can be seen from the many comments, she fulfilled much of what she wanted intended. She touched our lives and her strength is contagious, I will continue in my life to try to do a little of what she has done in helping so many others..
thank you for sharing
Hi! I was surfing and found your blog post… nice! I love your blog.
Cheers! Sandra. R.
Les you’ve been on my mind a lot lately. I so miss our talks. You will never be forgotten in my heart. I’ve been up all night and you’ve come up several times
I miss you terribly. It’s not everyday you meet someone so special.
But I know you are watching over all of us as we keep fighting the fight. And one day we will meet in spirit. I kick myself everyday for not going to CA, I thought I was too sick to do it. If we only knew then what we know now. So cliched
I wrote my goodbye letters the Christmas you went home. It was bad and I really thought it was over. I couldn’t walk or talk, but I took peace in knowing you’d be there to guide me home.
I rejoice in knowing you aren’t suffering anymore. Even though so many people probably never knew how bad it was. You were one of a kind. I would have to pry and pry to get you to tell me, you were always more interested in what you could do to help someone else. That’s one of a kind kiddo.
Miss you and love you
j