Spotlight on Heather, November 2019

Heather's Story

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1. What did you do before your diagnosis? 


Prior to being diagnosed with Lyme Disease, I worked full-time, was pursuing a Bachelor’s Degree in International Studies/Political Science. I was active. I loved to bike, swim, hike- I was an avid concert attendee! I grew up in Florida so the beach and boats were standard! I had a thirst for life and loved mine!  


2. How long did it take you to get a diagnosis? 


I was lucky. After my first test came back negative, I demanded to be tested again and it was then that Lyme was confirmed via Western Blot. It took about a month or so.  


3. Where do you think you were bitten? 


I remember the bite. I was bitten in Western Massachusetts.  


4. Are any of your family members affected? 


Thank God, no.  


5. What co-infections do you have? 


Borrelia, Babesia, Bartonella, are confirmed- and I need testing to see about others.  


6. What has been the most challenging part of having Lyme disease? 


This is an incredibly loaded and difficult question to answer. Probably the most difficult I’ve ever been asked. I’d say, the way that the disease hijacks my brain. My brain fog is quite extreme. At its worst leaving me seizing, confused, and feeling bleak about my circumstances. Once I get the right detox meds into me, those symptoms can lift a bit. It’s very obviously neurotoxins affecting my brain and body. The other would be financially. I don’t have the time to worry about all the doctors I’ve tried to gain help from and have been let down by, but in terms of actually supporting myself with treatments that currently exist? Nearly impossible. It’s left me close to bankruptcy.  


7. How has Lyme disease impacted you in a positive way? 


Lyme has been slowly molding me into the most compassionate, understanding, and fierce version of myself I could ever have known. I am stronger than I realized I could be. And that’s a pretty incredible discovery. I’m excited to share that strength with others in this community once I heal.  


8. What advice would you give to someone who was newly diagnosed? 


I would tell them to not ignore their diagnosis, but also not to fear it. I would tell them that there is Hope and there is a giant and unfortunately growing community of likeminded individuals who can be of great inspiration and support throughout this journey. Also would refer them to an LLMD.  


9. What would you like to do/pursue once you’re healthy again? 


Once I’m healthy, I would like to finish that Bachelors degree I had to put on hold. I would also like to return to work so that I can support myself and feel in control again. I would go out in the sunshine, since that’s not currently an option most days. I would swim, I would run, I would read anything I could get my hands on. I would like to start a family (safely) and last but not least, I would like to give back to the Lyme community and serve those whose stories I know all too well.  


You can follow Heather on her Instagram @Lamiabellamente


Story Spotlight, November 2019 

Spotlight on Jenna, August 2019

Jenna's Story

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1. What did you do before your diagnosis?


Before my diagnosis I was a college student and worked with infants/children in children’s ministry as well as a volunteer for teaching children with special needs horseback riding. 


2. How long did it take you to get a diagnosis?


About five months, only that quickly due to advocating for myself and having every test imaginable done as well as extensive research and exploring every possible avenue for help. However, the period of five months before being diagnosed was one of the darkest times of my life. My journey really began when I was eleven years old and was diagnosed with a autoimmune disease that occurs in children from rheumatic fever, which after years of suffering I was finally able to fully heal from with the help of an amazing immunologist. As a teenager I began experiencing chronic and near constant migraines, with one constant one that took place while I was in college lasting nearly ten months. I now believe this to be connected to underlying Lyme bacteria within my body. Merely four months prior to my onset of Lyme disease I had been diagnosed with a devastating autoimmune illness that  that I now believe may possibly be connected to or caused by the lyme bacteria. So, needless to say, I was already worn down physically and emotionally before this illness even began. That being said, finally having an accurate diagnosis, knowing the Lyme bacteria was the root cause, was like a light at the end of a very long and dark tunnel for me, I finally had hope for healing upon testing positive for Lyme.


3. Where do you think you were bitten?


Like many others who have Lyme disease I do not remember being bitten, however I was most likely bitten while horseback riding or hiking, two of the things I enjoyed the most. I have also found ticks at my house so it could have happend literally anywhere at anytime.


4. Are any of your family members affected?


I am the only person in my family with Lyme disease. 


5. What co-infections do you have?


I have multiple co-infections, two different strains of Babesia and also Bartonella.


6. What has been the most challenging part of having Lyme disease?


By far, the most challenging part of Lyme disease is the excruciating pain and how it overwhelms and impacts every aspect of life. My symptoms list is as follows; constant migraine, facial pain, eye floaters, light headedness, extreme fatigue, weakness, nausea, chills, muscle aches, muscle stiffness, light sensitivity, chest pain, joint pain, involuntary motor tics, nerve pain, back pain, shoulder pain, neck pain, dental pain, jaw pain, increased motion sickness, skin sensitive to touch, eye pain, brain fog, hot flashes/cold flashes, pelvic pain, bladder pain, seizures, etc.  It is extremely challenging to be twenty four years old and primarily bed ridden on and off for months on end, seeing the world around you experience life while you are in the prison of your own body. Lyme disease is not simply a disease process that is taking place while a person is living their life, it is an all encompassing and overwhelmingly darkness that suddenly rushes into ones life. No one ever expects to wake up one morning in pain and have that pain never go away, and the impact that has on the human body, mind, spirit and life. This is the painful truth of Lyme disease.


7. How has Lyme disease impacted you in a positive way?


My faith has carried me through the darkest of times. With Christ, I am able to experience true joy in the midst of the most difficult circumstances and He and has given me hope for my multiple other chronic illnesses. His light shines in the darkness and the darkness has not overcome the Brillant Light. I have learned to live life and to unreservedly enjoy the blessings both big and small that still surround me. Even as I am writing this so many people, places, experiences, and simple things flood my mind with joy.


8. What advice would you give to someone who was newly diagnosed?


My best advice to anyone who has just been diagnosed is to envision yourself happy and healthy living the life of your dreams, and never stop fighting even in the most seemingly hopeless moments until you are living that dream. Also, I would encourage them to vehemently pursue finding the root cause of all of your various underlying health problems and treating them with a holistic, multifaceted approach.


9. What would you like to do/pursue once you’re healthy again?


When I am healthy again, I plan on pursuing a masters degree in social work, traveling the world, and writing a book about my life and experience with Lyme disease. Honestly, there are so many things, there isn’t a list long enough in this world! 


Other facts about Jenna:


-24 years old 

-Born and raised in North Carolina

-Graduate of the University of North Dakota

-Diagnosed with Lyme disease in 2019


Story Spotlight, August 2019

Story Spotlight on Logan, July 2019

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Logan's Story

What did you do before your diagnosis?


I was a teacher for six years. I was fun, energetic and loved what I did. That began deteriorating steadily over my entire career. 


How long did it take you to get a diagnosis?


 I was originally diagnosed and treated in 2008 with 10 days of doxy. About six months later I started having panic attacks, increased anxiety and random pains that my doctors attributed to depression. This ebbed and flowed for years until I finally hit a wall in June of 2015 when I got into bed and did not get of bed/the house for about a year and a half. Was not properly diagnosed again until August of 2015 after seeing about 10 different doctors and a nice stay on a psych ward for 15 days. I did a bunch of abx, herbals, alternative meds, DesBio, and one that I cannot think of at the moment (thanks lyme brain). I also had 30-40 symptoms at any given time. 


Where do you think you were bitten?


 I was initially bitten on Swan Island in Maine, but some doctors suggested that I was lucky enough to be bitten and infected a second and possibly a third time before my diagnosis again in 2015. 


Are any of your family members affected?


My mom just finished up cancer treatment and was going through her medical paperwork and noticed that she tested positive for lyme, but no doctors ever mentioned it to her. She is going to get tested again to see what the test, which I know are highly inaccurate, will say. 


What co-infections do you have?


Never officially diagnosed with any co-infections, but a couple LLMDs suspected babesia and bartonella.


What has been the most challenging part of having Lyme?


All of it has been challenging. I think that is what makes it so hard. When you think you have overcome or mastered an aspect of it, it throws you another curveball. I am fortunate to be in a place that I am functional enough to run, and people see that as me being better. It is hard to explain that I run in spite of all the pain and nonsense I endure, not because I am better. It is hard for people to understand this aspect in particular.

 

How has Lyme impacted you in a positive way?


It has made me focus on  me in ways I never did before. I run a lot, and I have been trying to clean up my diet. 


What advice would you give to someone who was newly diagnosed?


Trust in your body and yourself. If your body is telling you something, believe it. For years I had my doctors tell me I was fine. All my blood work and tests were "normal" and "in range" but I knew I did not feel right. I even had a lyme "specialist" tell me I was cured and should be better. I could barely keep my head up. I did not go back to him. 


What would you like to do/pursue once you’re healthy again?


 I think the way lyme and co. have affected my brain and overall I guess, teaching in a classroom is probably out, at least for a while. I would like to find a role that allows me to help people and maybe teach in some capacity. I am at a point where I can function most of the day, but do need breaks here and there, which makes holding a "traditional" job tough. I am lucky to have a college friend hire me to do random things for him, which keeps me busy, but the stress of some of the work has not been good for my health. It is a tough thing to weigh finally having a decent income to pare down some of the debt I built up while get diagnosed and the toll the job takes on your healing process. 


Story Spotlight, July 2019

Spotlight on Mikayla, May 2019

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Mikayla's Story

What did you do before your diagnosis?


Before being diagnosed I was always very lively. I had a good group of friends, did well in school, and played three sports including ice hockey. I worked at a diner and babysat a lot as well. I ended up getting into Nursing school and was so beyond excited to follow my dreams and do what I love but my health declined rapidly and I was now the patient.


How long did it take you to get a diagnosis?


Over 6 years! I saw countless doctors, specialists, naturopaths, therapists and had hundreds of testing done. I swear I was tested for just about everything except Lyme disease, go figure.


Where do you think you were bitten?


I grew up camping so that very well could have been the spot. But I also lived in a heavy wooded area.


Are any of your family members affected?


My mom also has Lyme and my brother absolutely does as well but he won’t get tested.


What co-infections do you have?


Babes, Bartonella, Brucella, Chlamydia Pneumoniae .. those are the ones I can remember!


What has been the most challenging part of having Lyme?


I feel like many people would think the loss of the life you lived would be the most challenging/frustrating, but honestly it’s the lack of knowledge and understanding. Everyone thinks that because you look okay you must be fine. Or if you get dressed up once in a months time you must be healed and feeling so much better - wrong. It almost makes me want to not shower, not get dressed, not talk, and sleep all day just so people wouldn’t be so judgmental. You literally have to look like you got hit by a truck and rolled around in some dirt for people to understand just a little. I’ve become so good at faking it and plastering a smile on my face that it makes me feel like such a liar. I’m not one to care what others think, but at the same time someone thinking you’re faking it or really not grasping just how much pain you’re in is beyond frustrating. My illness is invisible on the outside 99% of the time (besides the PICC line that’s in my arm) but if you could see how poorly my body is trying to hold itself together on the inside you’d be amazed.


How has Lyme impacted you in a positive way?


Lyme has honestly been such a blessing in disguise for me. Although it’s taken so much away from me and has literally turned my world upside down, I know I was given Lyme disease for a reason. It’s taught me to slow down and recognize what’s actually important and what matters. I actually now value myself and my time way more than I ever did before. I’ve learned that life is a blessing and it’s up to you to live and thrive despite the obstacles thrown your way, and I’ve learned that I’m stronger than I ever could have imagined. 


What advice would you give to someone who was newly diagnosed?


Don’t be afraid to reach out! This isn’t something you should go through alone and there are SO many people that actually get it and can offer advice and support. Also, something I like to remind myself of when I’m having one of those unbearable days where I can't imagine how I’m going to make it through … you’ve already made it through 100% of those dark days, you’re going to make it through this one too!


What would you like to do/pursue once you’re healthy again?


Honestly, the first thing that comes to mind is being a mom. I recently got licensed as a foster parent, so really it could happen at any time and I’m so beyond excited. As for a career, I’d love to get into Child Life at the hospital, maybe finish my nursing degree as well, but I love the patient relationship and find it to be the most important thing. But, who knows what the future holds! Que Sera, Sera.


Story Spotlight, May 2019