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Lyme Warriors
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Rebecca Roll
What is today?
-Today is May 3rd, today is my 42nd birthday.
-May is Lyme Disease Awareness Month💚
-Some people hate birthdays as they get older. I myself, LOVE my birthday as I get older.
Why? Because if you look at the picture below I took that picture when my husband was at his lowest, when he almost lost his battle with Lyme. Some people would be ashamed to share it, I am proud. I was depressed, scared, and afraid of what our lives have become, and where they were headed . What happened to us?
I took that picture so that I could do exactly what I am doing right now.
I am typing this message, to let you all know WE DID IT, we made it through the battle known as LYME. That's NOT me anymore!!
My husband had a long road to recovery, but HE MADE IT. Yes, he has his moments here and there. But we do not question will there be a tomorrow?
We don't question what can we do?
WE DID IT!
You have many years ahead of you as well, you have a voice, you have a chance for full recovery!
We took this battle of Lyme, that not only effects the patient themselves but also spouses, children and family members, and we formed this group. We can't do it alone and neither can you! Let's make a change together.
So for this birthday my wish is that you don't just sit back and let the world pass you by.
Do something to be the change you wish to see.... look forward to the birthdays, the wrinkles (just means you are smiling more). It's not another year older, it's another year in this world where WE can make a difference.
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Charlotte
From the Mother of a daughter bitten by an infected tick
Charlotte was infected with Lyme and Bartonella after a tick bite when she was 4 years old. What followed were the scariest, most stressful months of my life. Watching my daughter suffer and feeling helpless is something I would never wish on any parent. But thankfully we found hope! Finding an LLMD who listened and was empathetic to what we had been through was the first step to healing. Once we had an official clinical diagnosis and bloodwork we could actually form a plan to help Charlotte overcome the disease that was ravaging her poor little body.
Three years after a great deal of intensive treatment and support, I am happy to report that Charlotte is still in remission. She is a happy go lucky, outgoing, and spirited little lady and is the best example of a Lyme Warrior that I have ever seen! She was and continues to be so strong. I’ve never met a kid who has been through SO much who simply doesn’t ever back down and fights through pain and adversity! We are thankful each day that we are blessed with this amazing little girl who wants the world to know that she's a Warrior! 💚
Our family is working hard every day to educate on the dangers of ticks and tick borne illness with the help of Lyme WNY. I am so grateful to them for being there to listen, offer support and most of all for providing us with a community of fellow Lyme Warriors with whom we could connect with so we didn’t feel so alone. The work that the Lyme WNY team is doing every day is making huge gains in the fight against Lyme! 💚
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Marcy Koch
Marcy- Lyme Warrior
I had been sick on and off from the time I was in my late teens until the birth of my children with muscle pain, headaches, digestive issues, dizzy/ fainting spells and fatigue. After I had my children all of my symptoms increased and became more persistent.
I started seeing many different physicians without getting true answers to what is going on with me until one thought maybe I had Lyme Diseases. He tested me for Lyme, however my test was “negative” . I was surprised because all of my symptoms fit. I did some research and started to wonder if my test was even accurate. I posted something on a small private local Facebook group and Rebecca Roll reached out to me encouraging me to attend the next LymeWNY meeting. My husband and I attended. It was when Lyme WNY was just getting started. The group took up two small tables at a local restaurant. There I found people just like me. People who had no answers for years or had “ negative” Lyme tests that were receiving help! That night I learned that I am not alone in what felt like a very lonely journey. We left that evening with a ton of great resources, suggestions for practitioners that could help, and new friends! My family is so very thankful for Lyme WNY and we are still active members. I still have a long way to go and it helps to hear other people’s stories to remind me I am not alone. We attend the monthly meetings still and my husband is now part of the Lyme WNY board.💚
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Cain
Shared by Julie, the Mother of a Lyme/ PANDAS Warrior
In the fall of 2018 our six-year old son Cain was diagnosed with Lyme Disease and PANDAS. This diagnosis was completely unexpected and quite frightening. One of the first phone calls I made was to my friend Rebecca Roll. She began to take action as if Cain were her own son. With her help we were able to find a LLMD and get Cain the help he needed. Cain still has issues with anxiety that he is working on but overall he is a happy, healthy, loving little boy. He loves his dog, his family, playing his drums and playing with his friends.
This community is so lucky to have Lyme WNY. Finally there is a place for people to receive education, come together and meet up with others going through the same things.
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Ken Allein
From @ a Lyme Warrior Ken Allein
I always had health issues since I was a newborn ... My mother was a nurse at the time as was her sister. I will so sick my mother was really scared for my life she told me later in life.
She had the intuition back in the early 70's to take me to an allergist in Kenmore NY. I was allergic to everything food, pollen grass, mold just to name a few .
My diet was changed allergy shots prescribed etc. When I hit age 13 things became apparent something else was going on.... Random things such as joints aching for days, fatigue where I would sleep anyplace at any time. my sleep was varied insomnia,then too much sleep.
Then, once I was out of highschool it was gastro issues of enormous pain only to be told there was nothing wrong with me other than IBS. Then it was mood swings I could not put my finger on. Things such as Depression,anger anxiety, paranoia and had no idea where this was coming from. I was given drugs and counseling but they never helped.
Fast forward to 1994...
I had lived a life of misery and it still I was getting worse and Drs could not tell me what was wrong with me. I remember having shortness of breath where walking to the kitchen sink or my bedroom would leave me breathless.
Gastro issues flared so bad I thought the pain was going to kill me. My weight went from 176-150 . Gastro Dr said he found nothing after many colonoscopy over the years.
At age 45 I remember sitting at my desk in my home office staring at my computer screen not being able to process what I was supposed to be doing . It was like I was in a fog not being able to remember anything. This is when I became nervous.
At the time I was working for a non profit conservation organization where I would give deer and habitat education presentations. One night I was scheduled to present to a group of sportsmen and women . I was all set up and ready to go. Over the years I probably have given hundreds of this type presentation. Anyway I found out that I was having trouble getting through this presentation which set off my anxiety alarm where I couldn't find the words to present the information. I was a wreck , scared , anxious, and debilitated. People knew something was wrong because many had been to of my presentations over the years on various other wildlife topics. This was in 2007
After this event I went to dent neurology where I had hoped they would tell me what was going on with me. Well they found nothing. My memory proceeded to fail me even more as time went on and no Drs could tell me what was wrong with me.
Then in 2015 one morning I could not get out of bed. My muscle pain and fatigue was so bad I thought I was going to die.
Over the years I had had several lyme tests. All the tests came back negative.
With my mother being a nurse and my grandfather being a dentist you were taught to trust your Dr and the science.
What I didn't know was that the Lyme test is highly inaccurate.
This is when I started to read and research about Lyme disease in detail. What did I have to lose after Drs up to 22 of them told me it was this and that prescribed drugs and treatments that really never gave me relief.
Then I saw a article about a husband and wife who had went through many of the pitfalls I had went through. But the husband was having acute problems some symptoms the same and many different.
So I reached out to them.... Their names were Rebecca and Chuck Roll . Chuk was diagnosed with Lyme disease but ended up going through the same problems with Drs .
And they couldn't tell him what was wrong.
So I went to one of their monthly meetings when they were a fledgling group with up to maybe 10 -15 folks involved .... Those afflicted with Lyme disease.
There was a very common theme by these folks their story was so very similar to mine in that most Drs did not know how to diagnose and treat Lyme disease and chronic Lyme disease properly . As drs they were very mis informed about the guidelines in which they work within. But that is for another discussion on a different posting.
Lyme wny gave me insight to the pitfalls of Lyme disease and the poor science that was being used within the mainstream medical community .
I was going down a bad road health wise until I met Lyme wny they gave me info of Lyme literate doctors to choose from they knew who were the good and not so good. They had people within the group who could talk about their journeys which was a huge support. Because many Drs tell you it's all in your head take some psych meds and be on your way.
They are a family of support and if it was not for them honestly my health would be non existent .
What I found out when I went to my LLMD is that I likely was born with Congenital Lyme disease after my Dr looked over my entire health history. (Yes it is real)
My health is not perfect since being diagnosed with late stage chronic Lyme disease but I have to say my life is 50-60 percent better than it was over the years. Chronic Lyme disease is real I am a living testimony to this.
Thank you lyme wny
For giving me support and the real FACTS about tickborn illnesses.
I will be forever
greatful to my new family.
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Ann Desotelle
By Ann, a Lyme Warrior!
Today is May 5, Cinco de Mayo...an annual celebration about Mexico’s liberation from the French. My traditional celebration with my friends was nonexistent for 3 full years. Lyme with Babesia robbed 3 years of my life- from personal to professional, to emotional, and financial. I couldn’t wrap my head around a medical community that shuns an entire population of very ill people. After 3 years of misdiagnoses and untreated Lyme, I found my path led me to a Lyme friendly/knowledgeable population at Lyme WNY. Fast forward 10 months and I can finally celebrate my liberation from tick borne diseases...I prefer my lime to come from a produce section and not from a tick..Thank you Lyme WNY and for all those countless people who have been with me during this battle...
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Chuk Roll
Chuk Roll-Lyme Warrior
LymeWNY
My journey began like most journeys with lyme disease do... It started with a list of symptoms including fever, joint pain, headaches, swollen feet, brain fog, pink eye and many others. Getting a diagnosis, proved to be a challenge. After countless tests, doctors, months, and my wife(Becca) pushing for a lyme test, I was finally diagnosed with lyme disease. I was also diagnosed with Mycoplasma and Bartonella(coinfections of lyme). This was a blessing to have a diagnosis, but also a curse, we had no where to turn, no one to help us.
Getting treatment was the next challenge. A local doctor tried and did what he could to help me, but it was not enough. Through many phone calls and lots of research, Becca was able to find a doctor in Pennsylvania. The journey did not get easier! I had to travel to Pennsylvania once a month for almost four years(Thanks to my dad and Becca for company on those rides). During treatment, my symptoms at times got worse, sometimes better, mostly worse. It was hard to keep going! It felt like it was never going to end! I had to force myself to make it through each day, while fearing that I was going to miss my girls growing up. I just wanted to be somewhat normal again. I did't realize how important my health was until I didn't have it.
Today, I'm here, I'm happy, I'm much much better! The journey was long! I am better and you can be too, there is a light at the end of the tunnel. Stay focused, stay positive, and never give up!
Lyme WNY has giving me an opportunity to pay it forward, to be able to help others like I was helped. Lyme WNY is a great resource for information and support for those who need it. I would like to thank the members of Lyme WNY, my friends, my family, and especially Becca for never leaving my side!
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Jamie Davison
Dear Lyme Disease,
For the past 3.5 years you have tormented me. You have emotionally, physically and spiritually destroyed me. I have spent years begging God, my God, for better days. By his grace, those days feel like they are finally here.
Thank you to my husband, friends, and Lyme WNY family for supporting me through the past few years of unknowns. Sadly, without you, there would have been no me, I was lost.
I am humbled to announce that I have been off of treatment, in remission, for 6 months and continue to pick up momentum. I am back, I made it.
WE did it!
#tickcheck
#lymeandthepearl
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Juliet Szymanski
Juliet, mother of Lyme Warriors
I have watched my daughter suffer with an illness we did not know about for 3 years. We had multiple doctors tell us she was psychosomatic or had a convergence disorder and that my 15 year old daughter just didn't want to go to school. As her mother I knew that wasn't true. After years of searching, three chiropractors told us they think she may have Lyme disease. One of them referred us to a LLMD. My daughter fought us on going to her because she was done being poked and tested with no answers. Watching my 15 year old daughter take over 25 different migraine medications was not easy and the side effects were hard for my husband and I to watch. We understood but we were determined to find some answers and we felt what this doctor could tell us was different from the rest. After dragging her in to the appointment and an hour talking to the doctor, she suspected it was Lyme disease. The bloodwork came back in a week or so confirming it. Right then and there, my husband and I knew we had to do whatever we could for our daughter, no matter what the cost was. With the help of family, friends and an incredible organization, we were able to go to some of the top doctors out there to treat her. She has had many ups and downs and it has been a long road but my husband and I would do anything for our girls. With her going to these doctors, my other daughter was diagnosed with Lyme disease and we didn't even realize. Because of Stephanie, she was able to be treated before she got really sick.
Lyme WNY has been such a great support system. They are there for me when I'm having down days and with the help of this amazing group, we are able to help many others that have dealt with a similar situation.
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Jennie
Jennie, a Lyme Warrior
I always considered myself an active, energetic, and outgoing person. Until about 7 years ago when my life completely changed. My new “normal” included a stiff neck, headaches, facial pain, dizziness, stomach problems, and excruciating joint and muscle pain. The first year was filled with doctors appointments, tests, a surgery, countless misdiagnoses and medicines but nothing seemed to help. For years, I was just trying to make it through each day wondering every night if I would wake up the following morning. My friends and family were the only joy I had at that time. Finally, I found a doctor who tested me for Lyme and surprisingly came back positive. I never knew ticks were a common problem in our area nor do I ever recall having a tick bite. She put me on 3 weeks of antibiotics, but I didn’t feel any better. It was a huge disappointment. After researching Lyme disease my head was spinning with information. I was referred to Lyme WNY and told that they had a lot of useful information. I had no idea walking in that it was going to be the answer to all my prayers. Listening to each story filled me with so many different emotions happiness sadness frustration relief and most importantly hope. I wasn’t alone, I had people to talk to who were going through or had been through the same thing. Lyme WNY helped me to find the right LLMD and now I am on my journey to recovery. I am able to play with my kids, work and perform daily activities without feeling like I am struggling to get through each day. There are not enough thank you’s or hugs that I could ever give Lyme WNY for not only helping me but my whole family. 💚
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Andrea Doll
Dréa, Lyme Warrior who is so Blessed to celebrate Mother's Day with her Miracle Baby
At 24 I was diagnosed with Lyme disease after finding me bed ridden, on oxygen, needing to use a cane, needing assistance with the simplest tasks. I had lost my job and my independence in the blink of an eye. The physical, mental and emotional trauma of Lyme disease is indescribable. Being diagnosed is just the beginning of your up hill battle that feels never ending. But one, day you stop and realize how amazingly strong you are. I slowly got better after years of treatments. I no longer need a cane to get around and I got healthy enough to have my beautiful daughter. I’m slowly finding my independence and learning who I am now because I will never be the person I was before Lyme disease. Lyme disease will forever have changed me and my family.
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Anonymous
From the words of a Lyme Warrior
Everyone’s experience with Lyme disease is a little bit different, but mine began a little over four years ago. In the beginning I started experiencing severe digestive issues, brain fog, and extreme fatigue, but if you fast forward two and a half years later, I then had a symptom list a mile long. By that point joint pain, heart palpitations, Bell’s Palsy, headaches, memory loss, anxiety, and depression had all become part of my every day struggle. This led to countless days where I could hardly find the strength to get out of bed, which left me confused. At that point in time I had seen fifteen to twenty doctors for an illness that they had deemed a “mystery.” I had been tested for Lyme Disease three times, and all of the results came back negative, but it wasn’t until I attended my first Lyme WNY meeting that I learned just how unreliable those tests actually were. After sharing my troubling experiences with Lyme WNY, they urged me to seek out a Lyme literate doctor, and for that I could never thank them enough. Now every month for the last year I have been traveling over 200 miles each way to see a doctor who not only gave me a clinical diagnosis, but is treating the Lyme disease, as well as various co-infections. My progress has been slow, but I am happy to report that many of my symptoms have lessened, and some have even vanished completely. I am so grateful to Lyme WNY for all of the help, and support that they have given to not only me, but to all of the Lyme warriors out there.
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Patty Regan
Written By: Patty Regan- Lyme Disease Advocate & Board Member
I’ll NEVER forget the screeching sounds coming through the phone line as I struggled to listen, understand and comprehend what my friend, Rebecca Roll was going through when her Husband, Chuk Roll was first sick and later diagnosed with Lyme Disease. They had recently found out that they were pregnant with their 2nd child and had the unknown before them.
Chuk was getting worse by the day and the despair in her voice not knowing IF he was going to make it was enough for me to attend one of their Support Meetings when the group started meeting with as little as 5-10 people.
I remember silently sitting in the room and listening to the stories people were talking about. Every story started and ended the same. These individuals, relatively healthy all had an onset of symptoms that were strikingly similar and there weren’t any Doctors in this area to treat them. I remember thinking, ‘Is this a dream?’ ‘How could this many people (at this time a meeting of 20-30) ALL have the same story with NO resolution?’
That is when I KNEW I had to do something!!
I was not in a very good place in my own personal life and I was suffering from anxiety & depression. I took some of the worst things that happened to me and started to turn them into positives. I knew that it was my calling to help others. Mainly because giving selflessly to others was ultimately helping my own issues in return. There is something magnificent about Volunteering your time and how self gratifying it can be that people who have once felt so helpless can turn that fear into HOPE! Hope for change, for help, and MOST importantly for SUPPORT!
That is where I began my self education journey regarding Lyme Disease and Tick Borne Illnesses. I began brainstorming on how I could help this cause and really further the mission of the group. Rebecca had already come up with a name, FB Page and a Logo for Lyme WNY that her sister, a local Art Teacher created. That is where the green Buffalo and Lyme WNY started.
As a retail store manager at the largest shopping center in Buffalo NY, I inquired about the opportunity to host a Walk at Walden Galleria and they were 100% on board. Once the idea was presented to Rebecca and the group the rest of our history began to unfold.
We held our First event, Lyme WNY Stomps Out Lyme Walk and it was a HUGE success. The amount of donations, sponsorship, volunteers, funds raised, assistance provided to Lyme Warriors and Their Families was overwhelming and that is when we realized we were NOT going to STOP until we were heard and started to see change.
Fast Forward to 2020 and I’m amazed at all of the accomplishments our group has made in such a short amount of time. We have gone near and far to make the mission of our group a success with 4 huge events that we have personally held, provided medical grants to afflicted individuals, attended other Lyme Disease Galas, Conferences, participated in News/ Media coverage, attended Press Conferences with Local Senators, partnered with local Legislators to Proclaim May as Lyme Disease Awareness Month in Erie County, assisted in Task Forces that are part of NIH/ HHS/ IDSA/ ILADS, participated in NYS School Nurses forums, participated in school assemblies educating students on safety and prevention while spending time outdoors, networked with several other companies who share the same passion as us, and MOST importantly are able to share these success stories with all of our followers.
The fact of the matter is- When I met Lyme Warriors they were looking for a glimmer of hope as mainstream medicine and diagnostics were failing them. I knew that it was MY mission to not only HELP those in NEED but to be the Voice for CHANGE when theirs could NOT be heard.
Each and every Lyme Warrior I have met to date, has left a very strong impression on me. I wish our meetings and introductions happened under different circumstances. Yet, I wouldn't write these chapters of my life any different.
My Hope is that with everything going on in the world that we may see a shift in paradigm that will benefit immediate & future diagnostics, serology and treatment so that all Americans feel they are understood, treated, and properly diagnosed with effective surveillance nationwide in regards to Lyme Disease and Tick Borne Illnesses.
As I always say…
Love and Lyme
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Danny Thaler
From the wife of a Lyme & Tick Borne Disease Warrior💚
So where do I begin.....back in April 2014 my husband Danny woke up with this debilitating pain behind his eye, like someone was squeezing the back of his eyeball. After a few days he went to Urgent Care who sent him to the ER which was followed up by scans and tests looking for tumors or blood clots, none of which were found. He was then sent to several specialists and many more tests done, hospitalized then released to be told nothing is wrong with him. After months of going to a chiropractor he was told to see a neurologist which included more tests. While seeing this group of doctors he started waking up with swelling in his joints that migrated daily. Finally one of the doctors said it sounded like he has Lyme disease. He did some bloodwork and sure enough had 4 positive markers. He ordered doxycycline for him but the next day he called and said it wasn’t Lyme because it didn’t meet CDC requirements so stop taking. We did some research and found a Lyme literate doctor who helped for a while but was very expensive and not covered by insurance. In 2016 we got into another Lyme literate doctor but once again expensive and not covered by insurance and almost 6 hours away. Danny was on a variety of treatments including IV antibiotics which I had to administer every day and sometimes twice a day. We had a nurse come in weekly for a year as well. After spending thousands of dollars I felt like we were living in the twilight zone... we couldn’t afford to keep doing this and our primary doctor didn’t believe it was Lyme, kept sending us to all kinds of specialists who did multiple tests, except Lyme, and couldn’t find anything wrong. We felt helpless. I was searching on Facebook and found a support group LymeWNY. We went to the next meeting and I left there crying, FINALLY people who understood what we were going through and believed us because their stories were exactly the same! This group of people are the most caring and compassionate people, always there to listen and help and they are all volunteering their time to help others while living their own busy lives. It is so nice to go share our story with others, learn of treatments others have used that they have had success with and to comfort new people that come with that same helpless look we had when we started. This is a horrible disease which most people don’t understand unless they lived it. It is often called the silent disease, you are told you look good but nobody knows how you actually feel, everyday is different, some good days and some bad.
I am forever grateful for this group, LymeWNY is like family to us, like a home we can go to and know people there care and are willing to help in any way possible. I miss our Lyme family and hope we can meet again soon.
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Stephanie Szymanski
By: Stephanie a Lyme Warrior.
My Lyme disease journey started over ten years ago. It was very difficult in the beginning and we struggled through doctors appointments, learning little about what I was going through and being misdiagnosed.
When I was finally diagnosed with Lyme Disease I thought the search was over because I finally had an answer. However, the battle had just begun. We thought we were totally alone in this fight especially with little help from the medical community.
It wasn't until we met Rebecca and discussed starting a support group for sufferers of Lyme and their families. My path has been more like a roller coaster and although I have a long road ahead, I have overcome so much and with the help of Lyme WNY, I know we aren't alone.
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Lorinda Koczur
Lorinda, & Her Daughter Allison- Both Lyme Warriors
Around 2004 I had a “mark” on my arm that my doctor told me he thought was a shingle. I shook my head and new it wasn’t a shingle, since it didn’t hurt, itch or anything. I remember having a “summer flu” after that. Bad headaches, brain fog, off balance and extreme fatigue. Later after changing doctors i was tested for EBV which came back positive. I was in my early 50’s so chances are high i had it at some point in time! It wasn’t until my daughter got very sick in August of 2010 and I pushed for testing through Igenex and found that she had Lyme Disease. Going to the LLMD2 days before Christmas with her and reading lead me to get tested too. By this time i had lesions in the white matter of my brain after testing was done. I have learned to live with chronic Lyme and fortunately I’m not as bad as many others are.
Fast forward a few years to when my daughter was in college and Rebecca reached out to me through a comment i had made a year prior and a local news channel regarding Lyme. I went to the first couple of meetings at Danny’s. I continue to advocate for people when they reach out to me. My daughter and i have been to different Conservation fairs in our town and pass out literature and answer questions that people have.
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Erica Law
By: Erica a Lyme Warrior
From 16-28 years old my health was on a decline. By summer of 2019, I had become disabled and bedridden. I finally received a proper diagnosis: I have Lyme disease.
Healing is a lot of work, but it is POSSIBLE. I went from needing assistance to walk to the bathroom and feeling like I had suffered a massive stroke to starting to ride my bike on good days this April! I’m excited for my future again!!! With intensive treatment I am regaining normalcy little by little. There are so many happy tears being shed these days. Everything is exciting all over again. Nothing is mundane. Nothing is taken for granted.
I am thankful for all the people I have met through Lyme WNY and for the constant encouragement that things can get better. Whoever you are out there- know things can get better and there is hope ❤️.
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Tessa
Shared by Lyme Warriors Mom
Everything about Tessa’s Lyme disease diagnosis was outside of the ordinary. The care that she received in the attention to detail that her doctors showed is something I am forever grateful for because I know that there are so many other Lyme warriors out there who are not as lucky. Her initial onset was a swollen knee, that through an MRI was diagnosed as Lyme, followed by bloodwork that allowed her to have a clinical diagnosis. I know what a rarity that is in the Lyme world. We are so lucky for the care that she received and the knowledge of LYME WNY, without it we would not have been so lucky. Lyme WNY is an incredible group of knowledgeable people who go above and beyond to make sure that people have the resources that they need and to show them how to be advocates for themselves.
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Mike Koch
Lyme WNY Board Member & Political Efforts Champion & Supporter of his Wife- A Lyme Warrior
My message for individuals with Lyme disease and their families is that there is hope and together we can make things better! There is a lot you can do from showing up at a support group meeting to listen and offer support, through fundraising to help others afford treatment, and by being involved politically to help support Lyme related legislation and increase awareness. Lyme WNY offers these opportunities to get involved and create positive change. My wife has had chronic Lyme disease and we joined Lyme WNY when it was a small group that could fit around a table at a local restaurant. We watched the group grow rapidly over time. We heard countless stories of individuals sharing similar frustrations with misdiagnosis, lack of recognition, treatment, and insurance coverage etc. I learned that there’s a real benefit over time in going to monthly meetings because there’s no quick fix. We’re in this together to help each other over time. Over the years my wife and I learned what seems to work for the majority and we saw group members get better over time which is reassuring. I have learned that there is a lot that can be done politically to help individuals with Lyme disease and tick borne illness at the State and Federal level (see a few examples below). I became a board member in the group to help bring awareness to Lyme related bills in various stages of becoming law (see link and to fight for beneficial legislation to improve diagnosis, treatment, insurance coverage etc. There is a lot you can do and by working together and there is HOPE!
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Allison Koczur
Allison- A Lyme Warrior
You know how you know your own body than anyone? You can tell when something is wrong? That was me for a full year as doctors tried to figure out the source of why I wasn’t feeling well. “Sinus infection” or “false negative mono” were the common ones, until even those diagnoses didn’t explain my symptoms. There were 217 vials of blood, two CT scans, four specialists, 1 MRI, and 1 LLMD - until I finally received the diagnosis of Lyme Disease, in December 2010.
“Well... now what?”
I had no idea I’d be starting the journey no one ever should have to take and that my Mom would be taking it with me with her own diagnosis. I grew up quicker than any 16 year old should have to. I missed half of my junior year and half of my senior year of high school. I’ll be 27 in November, but I can’t remember much from before I was 15. It’s like I’ve had complete years of memories ripped from my brain. I made it through college, but had my dream job of working at Disney World ripped away from me due to a relapse after I moved. There has been so, so much loss. But there has also been so much I gained from this. Knowledge. Friendships. Empathy. Humility. It’s been 10 years of growth, of faith, of uncertainty... but also of clarity. When you are diagnosed with a life long illness, at the age of 16, you quickly learn what is important in life.
I am now facing what may be relapse number three. It’s taken a while for me to accept that and it’s even more strange to write. If you looked at me, you’d never know I am sick. You’d never know the pain I’m in and the brain fog I experience daily. I think I’ve always figured if I pretend to be ok, I can fool myself into feeling ok. Mind over matter, right? I’m not sure what lies ahead in this possible new relapse. But I do know this: I will fight. I will continue to advocate. I will come out on the other side of this fight. And if you’ve been diagnosed, you will too.
“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”
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Maya Gentile
This is Maya, our Lyme warrior who has been struggling with Lyme disease for the past 3 years since she was 12 years old. I could never imagine or believe how one tick bite could change our lives to the degree it has. Once an energetic, care free girl who loved school, swimming and hanging out with family and friends suddenly turned into a girl dealing with countless doctors appointments, daily medication regimens, daily headaches, joint pain, stomach issues, allergies, brain fog, anxiety and depression. We are so fortunate to have found Lyme WNY. Lyme WNY is a group of caring and compassionate people who truly understand what we are going through. They been a huge support to Maya and our family through it all. Maya enjoys going to the meetings and talking with others who can relate to what she is going through. They have given us direction, guidance, support and information to help us to navigate through this difficult time. Maya struggles daily but at the same time is making slow progress and one of the strongest people I know. Seeing other Lyme warriors who have overcome this gives us strength and hope💚.
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Donna Kneis
By Donna a Lyme Warrior💚
The saying May day, May day is an SOS for aircraft, ships and boats etc who are in need of assistance. To those of us in LymeWNY we are taking all of the days in May to sound the alarm on Lyme disease and tick borne diseases. I have spent most of my life with health issues due to Lyme disease and not knowing it was Lyme. I finally found a Lyme literate MD and began my journey to some sort of healthier life. When I started to attend LymeWNY support group meetings that our group chair Rebecca Roll started, there were 5 folks including me. As time went on and the number of attendees grew exponentially, it was very evident the need was there for our group. As of today we have had a walk, two Galas and an educational symposium and monthly support group meetings that now hold upwards of fifty folks. I will be forever grateful for this group that reaches out to the community to help them in
their struggles with this disease. We have had successful stories and moments emerge from our efforts. This is a pic of me out West, summer of 2019 reminding folks to use products to keep you tick free while enjoying outdoors. Come see us when we all resume " normal ".
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