Hey, there! Let me introduce myself. We’ll start with the obvious. My name is Molly. I’m proudly born and raised in Minneapolis, Minnesota. I’m currently a senior at an online high school, which I can even attend from the comfort of my pj’s on a bad day with Lyme. I absolutely love to laugh, smile, to spend time with my family and friends, to write, and watch old Hollywood movies. I’m a peace lover, a compassionate soul who is inspired by the world around her, and a die-hard recycler. {Throw away a plastic bottle in front of me at your own risk!} A good mystery novel can suck me in for a weekend, and yet I’m against violence in the real world. I eat Gluten-free, mostly because I have to and partially because it’s pushed my culinary horizons far more than I ever imagined it could{ and this coming from a life-long foodie!}. I’m entranced by the serenity I can find in the woods, and yet I have Lyme disease. Yes, it’s a shocker. I live with an invisible illness, and as hard as it has been – I’ve seen myself grow and become a better person for it. If people can’t see what I live with, I hope they can see the person I’m striving to become each and every day. But, if you want any more tantalizing tidbits you’ll have to discover them for yourself!
I started this blog after the diagnosis of Chronic Lyme Disease by my doctor on New Year’s Eve, 2008. I jumped at the opportunity to not only chronicle my own progress through this difficult illness, but also to allow others a way follow and support me along the way!
Now, let me tell you my story. It’s long, and painful to remember, but I know it’s got to have a happy ending.
My journey of ill-health began almost 7 years ago, after a car accident shortly after Thanksgiving of 2002. I was in fifth grade, and began experiencing severe vertigo, nausea, trembling, and sound sensitivities several months after I was deemed in fine health after the accident. I walked with a cane, or by holding onto walls around me. The stairs in my house were a major obstacle; they looked like they were miles long to me, simply stretching farther than I could comprehend. I can remember the walls spinning around me while I was lying in bed until I began to feel as if I were going to spin myself…
I left school and spent hours lying in bed or in doctor’s offices. No one had a clear answer for my parents or I of what had happened to me, a seemingly normal girl. They finally agreed that I was suffering from a Vestibular Disorder, finding a 50% deficit causing the dizziness. I went through Vestibular Therapy for months and was slowly able to begin walking down stairs again, turning my head, and getting up and walking around my house. Sure, things still sounded like the volume was cranked up in my head like on a TV, and I had days where I would still tip over after losing my balance, but slowly my life began to slide back towards normal. I attended half days at my middle school and was supported by an amazing group of family and friends.
With a lot of allowances, I was able to begin living again. I couldn’t go to a movie theatre, or go to gym class but I was able to see my friends and stay in school through the rest of middle school.
After starting high school, I began to experience several more odd symptoms. This time they were wide-spread body aches, pains, fatigue, and migraines in addition to my previous symptoms. Once again, the doctors were clueless. But, this time we had our own answer. My mom had been diagnosed with Fibromyalgia (FMS) years before, and my symptoms were almost textbook. We found a specialist, and sure enough I passed the exam with flying colors. Now, I had 2 diagnoses.
I was unable to continue attending school, and left, but thanks to some amazing tutors I was able to keep up on schoolwork. I managed the pain, but the more pain I was in the dizzier I became. I was in a vicious cycle of symptoms that had a tendency to feed off of one another.
I thank God today that we found my current Alternative Medicine Clinic. After discussing my situation, my doctor suggested testing for Lyme disease. My parents and I were in disbelief. Lyme? Really? Lyme can do this? Wait – I never had a rash! Well, yes, it turns out Lyme can do this. It has. And most chronic Lyme sufferers never see a rash. This is a complex and mystifying disease. It’s not fully understood, and there is no specific treatment plan for it, yet.
I began treatment for this debilitating disease on January 1, 2009. It’s been a long, hard journey so far. And it’s not over yet. I’ve got a long way to go. I’m hopeful for the day that I can call myself symptom-free, for the remission of these infections living inside my body, and for the life I know I have in my future. And I’m grateful for the progress I’ve made so far.
Please, help support me though my journey through the “Lyme-Light” and keep checking back regularly to read my daily musings, updates, and hopefully my progress! I thank you so much, and hope you enjoy the site! Leave me a few comments now and then. Something’s got to keep up my morale… right?
Peace and healing, molly
27 comments
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March 30, 2009 at 12:28 am
knowledgetoday
I love your site. Keep it up !
June 25, 2009 at 2:29 pm
Amanda
Who is your LLMD? I am in search of a good one close to home (I live in Western Wisconsin, about an hour from the Cities).
I am going on Monday to have blood drawn for the IGeneX test and would like to try to find an LLMD before the results come back.
Thanks for your help. Been suffering for 13 years.
June 26, 2009 at 11:43 pm
dizzygrl05
Hey Amanda! Thanks for reading. I’ve had a few people ask me about my LLMD in the past few weeks, and I think my best response is to say that she currently has a closed practice. I’m so sorry I can’t be sharing more helpful news. A friend of mine has suggested however that you call ILADS, or post “searching for a doctor” at http://lymenet.org/ . Those resources can aid you in your search for a LLMD.
Here’s wishing you the best of luck! Your journey of ill-health has been long enough. You deserve to find the care you need.
Peace and healing, molly
September 29, 2009 at 9:32 pm
Kat
Hi,
My name is Kat, and I’m a 13 year old living in Nothern VA. I was just Google searching to see if my website appeared (www.intheLyme.org, check it out if you want!), and I came across this… I have had chronic Lyme diease for 5 years, but I was only diagnosed this March. I’m having some troble in Middle School, I’m a very good student (not to brag!) ;) and I have missed a lot of school recently. I have 2 friends with Lyme who go the my school, but it seems thier symptoms aren’t as bad as mine. I would like to hear from you if you have the time. :)
xoxo Kat
October 1, 2009 at 11:10 am
dizzygrl05
Hey Kat! That’s so awesome that the names of our sites/blogs are so similar! Look out for an email from me.
September 30, 2009 at 12:46 am
ashvantol
I really love you story. You did a great job portraying your life and Lyme.
Stay positive, I think it is one of the best things we can do to help ourselves heal!
Ash (Lymenaide)
October 1, 2009 at 11:09 am
dizzygrl05
Ash, thank you! Every day I try to find that positivity again. I believe it’s one thing that helps make us strong in the thick of this battle.
September 30, 2009 at 6:33 pm
Some changes are afoot… « I’m in the Lyme-Light
[…] A Lil Bit About Me… […]
October 18, 2009 at 2:03 pm
JG
Hey, Molly, so glad you are getting the help & treatment you need as many of us don’t. When I read your story it sounds very typical of some cases I have heard about (I am pretty much non-stop researching and reading about Lyme and related diseases, much to the chagrin of the rest of my family). I was wondering if your mom has ever been tested for Lyme disease also? There are cases where Lyme presents as Fybromyalgia or Chronic Fatigue, then is passed through the placenta to a child who is asymptomatic (some people have what’s called a dormant disease, which is true in other diseases, not just Lyme) until a trauma to the body (i.e. a severe infection, illness, or for example, the car accident you were in) causes the spirochetes to become symptomatic suddenly. I don’t mean to assume anything or maybe your doctor has already suggested that but just mentioning it in case you believe it’s worth looking into. Lyme mimicks so many other diseases that it should probably be considered in almost every mysterious illness. Lord help us to get doctors to understand that!
Good luck with your treatment, you’re gonna beat this! You sound sweet, smart, and optimistic and that’s half the battle right there. I’m on antibiotics again now so I am right there with ya. We all are. You go girl.
October 24, 2009 at 12:16 am
dizzygrl05
JG, as I was reading this I was smiling. You’re right, it’s such a “typical” case. My mom and I were tested for Lyme at the same time, and we both came back with similar results. Neither of us were positive, of course. But they were similar enough that my doctor believes I was infected congenitally. And I even had the trama to make it even more convincing! I was healthy, for the most part, until that accident. It wasn’t until after that when my downward spiral began. When my doctor first suggeted Lyme last year we were shocked. We shouldn’t have been, we live in MN. But we were. It all made sense as soon as I got googling. Everything. Especially the fact that most of my family is sick with similar symptoms. I am lucky that my doctor saw the signs, and connected the dots.
Thank you so much for you well-wishes!! The support of you all is what’s so heart-warming about this blog.
Good luck on your own treatment journey, and that of your family! You’ll be in my thoughts throughout this ordeal.
In healing, molly
January 29, 2010 at 11:35 am
Suzanne
Hi everyone – first of all, Molly what an incredible job you are doing. I have the same story to tell and can share my doctor (Dr. Alan Pollock in NYC – he will test you and explain how so many results are false negatives). I cannot say enough about him.
Alan A Pollock MD
184 East 70th Street
New York, NY, 10021
Phone Number: (212) 988-2702
But there is a lyme center at Lenox Hill Hospital in NYC – http://nymag.com/nymetro/health/bestdoctors/features/3323/
Thanks again, Molly for the great website. You are doing all of the sufferers of his disease such a service and at such a young age. I hope your parents are very proud of your giving nature, intelligence and incredible writing skills. I’ve only read the “about me” but already I know that your site is going to help me and so many others. Big hug to you and I hope you are doing well and beat this horrible disease.
January 30, 2010 at 11:33 am
btrflynana
Hi Molly!!
I love your blog! I hope you don’t mind but I have taken the liberty and added you on my blog under Lyme Favorites! I am so glad you visited and commented on my blog! In response to your request sure for you I will say go right on ahead kiddo however; please refrence where you got it!
Keep up the good fight and stay positive! I so love your attitude! I pray in both our lifetimes we will see a cure to this horrible disease! I am sorry to hear that at such a young age you suffer so much from Lyme. I know my body often feels as if a truck has hit me and never left!
Hang in there kiddo!!
Sending big hugs your way….b’nana
March 8, 2010 at 7:37 am
Chelsea
Molly,
I just came upon your blog this morning:) I have been able to relate to almost everything I have read which is comforting. I am 21 and was diagnosed last fall after being sick for a year. Its not a fun path but one we are on none the less. I try to stay upbeat whenever possible, which it seems you do too. Thanks for all the stories, I will continue reading about your journey as I venture through mine:)
Chelsea from PA
April 15, 2010 at 10:22 pm
Emily
Hi Molly,
I just checked out your site and I’d be glad to extend an invitation to you to let me make a link to this site from my new site (coming online in May.) It’s almost the same address as Kat’s (that’s how we met.) Mine will feature an art/writing exhibit I did this spring called “In the Lyme-Light: Portraits of Illness and Healing.” I resonated with your opening statement and feel we’re coming from a similar place. Thank you for sharing your story and your optimism. You’re welcome to email me. Emily from ME
July 19, 2010 at 2:12 am
Canada In Voip
Hey, Molly, so glad you are getting the help & treatment you need as many of us don’t. When I read your story it sounds very typical of some cases I have heard about (I am pretty much non-stop researching and reading about Lyme and related diseases, much to the chagrin of the rest of my family). I was wondering if your mom has ever been tested for Lyme disease also? There are cases where Lyme presents as Fybromyalgia or Chronic Fatigue, then is passed through the placenta to a child who is asymptomatic (some people have what’s called a dormant disease, which is true in other diseases, not just Lyme) until a trauma to the body (i.e. a severe infection, illness, or for example, the car accident you were in) causes the spirochetes to become symptomatic suddenly. I don’t mean to assume anything or maybe your doctor has already suggested that but just mentioning it in case you believe it’s worth looking into. Lyme mimicks so many other diseases that it should probably be considered in almost every mysterious illness. Lord help us to get doctors to understand that!
+1
October 7, 2010 at 1:25 pm
Tom
Molly,
I came across your site via facebook adn Lymeaide. I have a wife (Molly) and two children who are fighting lyme disease as well. My Molly had horrible syptoms that started after a minor car accident in 2006, treatment started in 2009 and she has a long road ahead but like you, she will get better. Keep up the good fight and I know that you will beat this!
October 28, 2010 at 5:14 pm
dizzygrl05
Tom, thank you for the encouragement!!
So sorry to hear about your wife and children. We’re all in the fight for our lives together. My symptoms started after a car accident too – the trauma was too much for my body to cope with in addition to the Lyme it had already been fighting. Your Molly and I sound like we have similar stories.
Your positivity is wonderful to see. I wish you and your family all the health and healing you deserve.
Hope to hear from you again,
molly
February 11, 2011 at 2:02 pm
katharinetrauger
Hello, dear Molly,
I found your site while visiting the “tag surfer” page at wp. I do not have Lyme disease; no one I know has. But, I was captivated and encouraged by your site, anyway, because of your youth, your incredible writing style, and your lovely, giving nature. You give everyone hope, not just those who are ill.
The more I read, though, the more I thought of a time when my son was working in Wis. and did contract Lyme disease with a fever and rash, came home (Arkansas), was treated immediately by a seemingly savvy doctor who made several phone calls before prescribing his medicine, and recovered. Since you and your readers have researched so much, I wonder: do you know if there is danger his infection could re-appear or spread to his wife and children? He has been symptom-free for years.
Thanks for your consideration, and for this uplifting site. I will pray for your health.
February 12, 2011 at 7:49 pm
dizzygrl05
Katharine, thank you so very much for you kind words!! I do believe I blushed. But you spoke to my heart. This is the reason I’m here. Thank you for reaffirming that!
I’m sorry your son has experienced Lyme! However, it sounds like he was one of the lucky ones – thank goodness! From what you’ve said it sounds like he found the rash and was subsequently treated for acute Lyme in a pretty timely manner. That’s the key – not everyone gets the rash and it makes treating Lyme sooner much, much easier. When acute Lyme is treated correctly and quickly, it’s usually no longer a health concern. I’m so happy to hear he’s been symptom-free for a while now!
Unfortunately, I would be remiss not to say that it is a possibility (a small one!) that he could experience a return of the infections. There isn’t enough information out there for us to know if Lyme can actually be cured or not yet. I think your son is pretty safe though. He sounds like he’s regained his health and is living a normal life. I hope and pray that he will continue to do so!
I encourage any of my readers to jump in if they disagree, or have any further comments.
Again, Katharine thank you! It’s been a pleasure hearing from you. I do hope I’ll see you around again in the future!
molly
February 12, 2011 at 9:37 pm
Katharine Trauger
I hoped you would say there may be no danger. I think I will subscribe right now, though, because I want to reap the research of your other readers. I know it was a good thing for my son to catch it so early, and yes, his life seems normal; he seems strong and disease free. It sorta reminds me of chickenpox, though, in that it can bounce back. I do want to know more. So, will click to subscribe right now.
Thanks for your time and hope you feel better and better. Really hope they find a way to stop this thing.
February 25, 2011 at 3:16 pm
Etienne Jakab
Hey, Molly, so glad you are getting the help & treatment you need as many of us don’t. When I read your story it sounds very typical of some cases I have heard about (I am pretty much non-stop researching and reading about Lyme and related diseases, much to the chagrin of the rest of my family). I was wondering if your mom has ever been tested for Lyme disease also? There are cases where Lyme presents as Fybromyalgia or Chronic Fatigue, then is passed through the placenta to a child who is asymptomatic (some people have what’s called a dormant disease, which is true in other diseases, not just Lyme) until a trauma to the body (i.e. a severe infection, illness, or for example, the car accident you were in) causes the spirochetes to become symptomatic suddenly. I don’t mean to assume anything or maybe your doctor has already suggested that but just mentioning it in case you believe it’s worth looking into. Lyme mimicks so many other diseases that it should probably be considered in almost every mysterious illness. Lord help us to get doctors to understand that!+1
+1
June 9, 2011 at 5:49 pm
dizzygrl05
Thank you! What you’ve described is exactly what happened in my case. My mom and I both have Lyme, and we believe mine was passed to me during her pregnancy and laid dormant until the trauma of a car accident. Isn’t it amazing? What a tricky, tricky disease this is.
April 6, 2011 at 1:27 am
Laurie
Found you through http://lymeslice.wordpress.com/
thought you might be interested in
http://www.facesoflyme.com
great blog…can see why you won the awards
June 9, 2011 at 5:55 pm
dizzygrl05
Laurie, thank so much! I’ll check out Faces of Lyme.
May 30, 2011 at 9:53 pm
Ali
Great blog Molly! You are quite inspiring to read about. So positive for such a young age who’s already been through so much. Thanks so much for following me on twitter. It’s been very nice to meet you:-)
June 9, 2011 at 5:56 pm
dizzygrl05
Ali, it’s been wonderful to meet you as well!! You’re too sweet. Thanks so much for reading, and for commenting. They always make my day :)
September 12, 2011 at 1:29 pm
Virginia Knutsen
Oh Molly, you do amaze me! You have the ability to write and reach so many people and support is so important to people no matter what they have. Getting my nails done, I met other women who had a mastectomy like me and had the post mastectomy swelling. I’m waiting to hear what you found out on your Wednesday appt for a second opinion. It really hurts my heart to know how lousy you have been feeling. When I used to get migraines I felt like it was a day I lost and you must feel that way too. Remember I pray for you every night and whenever I think of you and I am so proud (Grandpa Reed would be too) of you, your attitude, your kindness and understanding and your very sweet nature. I’m so happy that I get to see how you are handling things and visit with you face to face now and then. Love you so much Sweetheart (I was going to say little girl but you are definitely not that)! Blessings on you, stay strong, you inspire me and many others. Grandma Gini