Nicole Danielle Bell

Lyme SUCKS. And sometimes, it feels like it will never change.

But I've met many people who dedicate themselves to ensuring that change HAPPENS.

One of those people is Bonnie Crater. She founded Bay Area Lyme Foundation and the Center for Lyme Action to increase research funding and get the answers patients desperately need.

Join me and Rich on Tick Boot Camp to learn how she did it, and how YOU can help.

Such an amazing .lyme conference. It was fantastic to be surrounded by so many brilliant minds working to prevent and cure . Lots of work to do, but leaving Boston filled with hope. 💚

It wasn't easy to go public with our story. It was messy and it brought out the worst and the best of me. But so many people have reached out to let me know how our journey has touched or helped them in some way. It creates a reason for all that we went through.

So when I saw this new sweatshirt from Lyme Warrior, I knew I had to get one. My story matters. And so does yours.
https://lymewarrior.us/shop/p/pre-order-only-your-story-matters-arrow-hoodie

In our first doctor's visit, we tested my husband, Russ, for Lyme disease. He tested negative. We later found out this test was wrong.

Russ also had Bartonella, but I didn't know what that was or to ask someone to test for it. Unfortunately, millions of others are in the same exact situation.

On the other side of our journey and countless hours of research, I knew the diagnostic problem was where I wanted to dig in. I surveyed the diagnostic companies in the space and realized that Galaxy Diagnostics. was where I wanted to pour my energy.

One of the reasons - this remarkable woman - Dr. Amanda Elam, co-founder and CEO of Galaxy.

I was honored to interview Dr. Elam with Rich on Tick Boot Camp. Tune in to understand how Galaxy is uniquely positioned to drive much-needed scientific discovery and change in diagnosing these elusive infections.

https://tickbootcamp.com/episode-375-galaxy-diagnostics-an-interview-with-doctor-amanda-elam/

And to understand why tick-borne diagnostics are so tricky, check out my YouTube video with Lyme Warrior.

https://www.youtube.com/watch?v=TLql2bGyqu8

The right test at the right time can change a person's life.

It's been almost two years since I launched What Lurks in the Woods. I've always wanted to do an audiobook - to tell our story in my own words and in my own voice.

I'm happy to announce that the audiobook will launch soon, thanks to the amazingness of Lyme Warrior. Stay tuned for more info.

May of 2016. Only 1 of the 5 bands needed to test positive on a Western Blot.

Our true answer came 15 months later when we retested with a direct method.

Since then tick-borne diagnostics has become a passion. I have spent the majority of my career in medical devices, including diagnostics, so I dug in to help solve this critical problem.

My video with Lyme Warrior explains the challenges with current methods and the best approaches available today.

If only I knew then what I know now.

Lyme Disease Testing: Why Tests & Doctors Miss the Mark Have you been tested for Lyme Disease but it comes back negative even though you feel sick? In this video, I'll share with you everything you need to know ab...

Want to read the executive summary of the State of Lyme Disease Research? Check it out.

So grateful for Lymedisease.org and the Center for Lyme Action for their support and everything they do for the Lyme community.

Read the executive summary of the newly released THE STATE OF LYME DISEASE RESEARCH IN THE UNITED STATES. https://www.lymedisease.org/lyme-research-funding-1billion/

I am excited to launch my latest project with the Center for Lyme Action summarizing the State of Lyme Disease Research. Read about the process in my blog posted on LymeDisease.org.
https://www.lymedisease.org/nicole-bell-making-sense/

And check out the paper on CLA's website. I look forward to a future where research is funded and patients get the answers they so desperately deserve.
https://centerforlymeaction.org/state-of-lyme-disease-research/

Making Sense of Lyme Research - What Does the Science Say? The problems Lyme disease patients face ARE solvable.

If you know someone experiencing Mild Cognitive Impairment or dementia, you NEED to read this article. It's all the things I wish I'd known at the beginning of our journey.

Op-Ed: Evidence Shows Germs May Cause Alzheimer’s—It’s Time for Researchers and Doctors to Act on It Last month, a ground-breaking research roadmap was published in Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association, entitled “Establishment of a consensus protocol...

I love dogs. The only thing that sucks about them is that eventually you lose them.

When I lost Radar to cancer in December of 2017, I was devastated. Then, in September of 2021, I lost my Sonar to a debilitating neurological condition. I now know that his condition was caused by Bartonella - a root cause I suspected at the time and now have the lab results to prove it. Bartonella is also being studied as an oncogenesis target so I still wonder if it was the cause of Radar's tumor.

4 months after losing Sonar, I lost my husband, Russ, to his battle with Lyme, Bartonella, and Babesia. So much loss in such a short time. And all of it was preventable if caught earlier.

The kids begged for another puppy, but I couldn't do it. I got our third dog, Radar Junior (known as Junior), right after Radar died and it was too soon. I needed more time to grieve and process.

So we waited - almost 2 years. And then 2 weeks ago two things happened. First, I got lab results using the most advanced testing available showing that Junior was Bartonella negative. Two days later, an adorable puppy face popped up on my Facebook feed. The universe was telling me that it was time.

Meet Griffey. He has stolen our hearts and big brother Junior is thrilled to have a buddy again.

Why the name Griffey? Well, we like having 2 dogs and we like having paired names. We are a baseball family so Griffey Junior seemed fitting. Plus, my dad's name is Ken. We can't wait to get a photo of the 3 of them on the couch together. ♥️

I am always grateful when folks in the Alzheimer's community connect with our story. Dementia is a SYMPTOM and even an accepted diagnosis like Alzheimer's disease is not a ROOT CAUSE. I will continue to push people to DIG DEEPER.

And dealing with dementia is beyond hard. It can be soul crushing. Sometimes the definition of success is surviving the pain and loss. For those in the thick of it, you are not alone and you are not a failure. I hope our story resonates and helps.

Thank you Banner Health and Dementia Untangled for the opportunity to talk to your audience. Link to the podcast below:

https://podcasters.spotify.com/pod/show/dementiauntangled/episodes/Advocating-for-the-Diagnosis-with-Nicole-Bell-e24ipoe/a-a9sq23n

https://www.youtube.com/watch?v=cC1vpAytSf8

Sometimes solutions to complex problems require out of the box thinking. What if we could leverage the advancements in cancer research to tackle Lyme Disease? What if we could take the targeted approaches developed to label and kill cancer cells and apply them to Borrelia and other tick-borne pathogens?

Dr. Timothy Haystead at Duke University is working to make these "what ifs" a reality. Check out my interview with him in the latest installment of the Lyme Warrior Research Interview Series.

Why cancer advances could hold the key to beating Lyme disease In this video, I'm talking with Dr. Haystead about why cancer advances could hold the key to beating Lyme disease. We'll cover everything from the molecular ...

25 years. So much has happened since then, yet so much immediately felt the same. I am so grateful for our amazing MIT family, and I was honored to share my journey at the TIM talks. Here's to tailoring our red jackets after another 25 years. And of course, here's to many other fabulous adventures before then.

There is the family you are born with and the family you choose. So grateful for this amazing group of women. Girls nights are fuel for the soul.

It's time to demand better!

Meeting with the offices of 2 senators and 2 representatives from North Carolina to ask for more federal funding for tick-borne disease research. 🙌

Latest project to spread the word and dispel the myths. Thank you Lyme Warrior and shout out to Lymedisease.org and Invisible International.

7 Myths about Lyme Disease Are you confused about Lyme disease? In this video, we're busting 7 common myths about this debilitating illness. From its transmission to its symptoms and t...

January 14. One Year. Once again, writing helped me process my emotions. Working to drive change. One year later and always.

Thank you, Lymedisease.org, for sharing our story.

Her husband died from Lyme-related causes. Now she advocates for change. First diagnosed with Alzheimer's, her husband really had Lyme and Bartonella. A year after his death, she works to change the system.

"Lyme is easily treatable with doxycycline."

That's what I've heard time and time again. But what does the science say?

Well, a prospective study at Johns Hopkins University showed that in a group of 234 patients treated for Lyme Disease, 43% of patients remained symptomatic after treatment. FORTY-THREE PERCENT.

14% of patients were so ill that their quality of life was significantly impacted.

And these patients were diagnosed and treated under what is considered "ideal conditions" by the medical community. Millions aren't so lucky.

DEMAND BETTER.

https://pubmed.ncbi.nlm.nih.gov/35066160/

So... You have Lyme disease.

That doctor says, "No worries! Take 28 days of doxycycline, and you'll be fine."

But is that true?
What happens to the bacteria during treatment?
Will it clear the infection?

These are questions that need to be answered with SCIENCE.

In my Lyme Warrior interview with Dr. Monica Embers from Tulane University, we dig into the research -- and spoiler alert, it doesn't support that doctor.

Check it out at
https://www.youtube.com/watch?v=I7ASREnyZp0&t=1s

About a year ago, I wrote an article for Project Lyme called Bartonella: The Beast Within. I talked about a boy named Michael, who experienced sudden psychosis and was in and out of psychiatric institutions.

The ROOT CAUSE? Bartonella.

Read his full story, written by the fabulous Kris Newby. It's a horrific story that could happen to anyone.

Story:
https://nowthisnews.com/swamp-boy

TikTok:
https://www.tiktok.com/t/ZTR9r62nh/

Project Lyme article:
https://projectlyme.org/bartonella-the-beast-within/

Every time the Alzheimer's community embraces our story, I feel one step closer to finding answers for the millions who suffer. Today, I am honored to be named a recommended author by AlzAuthors: Alzheimer's & Dementia Resources. Dementia is a complex disease, but root causes do exist - we just need to ask the right questions.

https://alzauthors.com/2022/10/11/nicole-bell-dug-deep-to-find-the-cause-of-her-husbands-illness/

Happy 56 years to two of my favorite people. Love you, Mom and Dad!

People ask what I am up to these days. Illness turned my world upside down, and setting it right took time and different thinking.

So, what AM I up to? Well, I am back working as a consultant helping young, medical device companies develop and grow. I'm an entrepreneur at heart, and using my experience to help others is rewarding and fun. I've also learned that I love writing. These days I mostly write op-ed pieces to share our journey and learnings (see https://www.beingpatient.com/nicole-danielle-bell-dementia-caregiving-vulnerability/ for the latest article). Most importantly, I reserve time for the kids and me to preserve balance in our lives--a lesson that was hard won.

But Tick-borne illness remains front and center. I've been instilled with a passion to drive change for those suffering. So I pursue passion projects that are centered on two main areas: 1) improving diagnostic tools for physicians and patients and 2) elevating the knowledge base for these drastically misunderstood diseases. I hope to share more on #1 soon, but today I want to talk about #2.

Groundbreaking science exists on pathogens spread by ticks and other vectors. Every year, information links these pathogens to dozens of chronic diseases stealing health and vitality from MILLIONS of people. But on average, there is a time lag of 17 years for research evidence to reach clinical practice. 17 YEARS. Those suffering can't wait that long.

So how do we bridge that gap? We share information. We learn. We take ownership.

My new project with Lyme Warrior aims to drive that process. In the new Lyme Warrior Research Series, I sit down with key leaders in tick-borne research to learn and share their pioneering work. This interview with Dr. Ed Breitschwerdt from NC State University talks about Bartonella, the stealth pathogen that can literally drive you insane.

The science is there, and in the end, science will win.

Bartonella - A Stealth Pathogen and its Devastating Impact - with Dr. Ed Breitschwerdt Dr. Ed Breitschwerdt has been studying the co-infection, bartonella for decades. Learn about this unique bacteria why it has illuded the medical community fo...

Being a caregiver was the hardest thing I've ever done. Hands down. My health and wellness suffered, and I became a new patient left in the wake of another.

I wrote about the biggest lesson I learned as a caregiver in this article for Being Patient Alzheimer's. Please share with the caregivers in your life, so they don't make the same mistake that I did.

https://www.beingpatient.com/nicole-danielle-bell-dementia-caregiving-vulnerability/

It was a pleasure to interview Dr. Eva Sapi as part of a new interview series for Lyme Warrior. Science will win and researchers like Dr. Sapi are on the front lines paving the way.

Eva Sapi & Her Lyme Disease Research Check out our interview with the legendary Dr. Eva Sapi, leading Lyme Disease researcher, patient, and advocate. Dr. Sapi has pioneered huge change in treatm...

Our journey taught us the importance of food as medicine. So when I noticed the kids snacking too much out of the pantry, I knew it was time to refocus on nutrition. We started an "eat the rainbow" initiative and track our fruit and veggie intake. The goal is 6 colors every day, and the three of us are rocking it.

This is Hailey's chart from last week. As a bonus, it prompted us to work on the spelling of our fruits and veggies! 🤣

Thank you, Being Patient, for spreading the word on the link between tick-borne illness and Alzheimer's!



https://www.beingpatient.com/tick-bite-lyme-disease-cause-alzheimers-nicole-bell/

His Diagnosis: Early-Onset Alzheimer's. The Suspected Cause? Lyme Disease - Being Patient Nicole Bell's husband's Alzheimer's diagnosis just didn't add up. The more she dug, the more she saw the real culprit could be Lyme disease.

I would write something pithy, but there are no words other than THANK YOU!

The shares and support have been FABULOUS!!

Well, I missed Lyme Awareness Month by a day, but in my mind, Lyme Awareness should be all year anyway.

I am always thrilled when the mainstream media covers tick-borne illnesses and highlights the horrors that they can bring. So to have TODAY.com run a feature on our story--let's just say it’s a moment that creates a reason for our journey.

Check out our article and PLEASE SHARE it far and wide. EVERYONE needs to understand how quickly one little tick bite can change their life.

https://www.today.com/health/essay/tick-bite-husband-undiagnosed-lyme-disease-rcna31268

Nicole Danielle Bell – Author Discover “Why” Nicole Danielle Bell wrote What Lurks in the Woods. Hear about the transformative journey that led to the creation of her memoir.

Today I found out that What Lurks in the Woods is an Award-Winning Finalist for the 2022 Next Generation Indie Book Awards in General Non-Fiction!

To be recognized in such a broad category alongside so many talented writers is humbling and exhilarating. Thank you

For better or for worse, in sickness and in health... Thanks to tick-borne illness, I now understand the full gravity of those words. Despite it all, I would still make the same decision I made 16 years ago. Happy anniversary, babe. We love you and we miss you.

Sunday we honored the man I've loved for the past 20 years. It was laughter, tears, and everything in between.

The flurry of the weekend has now subsided, and the grief floods in. The man I married was brought back to life by the memories of his antics, wit, and charm. Once again, I saw the love we shared and the father he could have been. Now, in the quiet, his absence sits before me like a massive chasm.

But the weekend also reminded me that Russ is still with us. His friends and family carry his spirit and memory. They laugh at his jokes and smile at his sh*t-eating grin.

So we move forward with Russ. We live every day with the energy, passion, and tenacity he brought to the world. We CREATE a reason for what happened by helping others and enjoying each moment.

I love you, Russ. Your life and the tribe you forged were gifts, and I promise to treasure them always. I promise to make you proud.

Our first event to honor Russ this weekend--a fundraiser to support Invisible International and the fabulous work they are doing to educate and advance treatment for tick-borne illness. The support from friends and family--from both near and far--makes me realize how truly we are.

Preparing for Russ's memorial events this weekend. My fabulous friend JvJ Designs made this unbelievably beautiful quilt out of Russ's shirts. I am so thankful for this new family heirloom and for the support from those we love. Cheers to celebrating the life of a man who truly was one of a kind.

Great article focused on the positive change brewing in the tick-borne illness world. And beyond grateful for the shout-out at the end.

https://m.facebook.com/story.php?story_fbid=356115046555382&id=100064706677493

10 signs of recent progress in the Lyme disease world Shining a light on efforts to reduce the suffering of people with Lyme and other tick-borne diseases.

Over the holiday weekend, I was honored to serve as a special guest co-host for Tick Boot Camp! Rich and I interviewed the amazing Jordan Dunin and learned from his story of discovery and healing. The episode drops on May 21st!

Lyme disease is the MOST COMMON vector-borne illness in North America and Europe. Yet the 2-tiered diagnostic test in use today is almost 30 years out of date. A few fun facts about this test:

- It was developed using whole-cell cultured B. burgdorferi even though science has shown that surface markers on the bacteria change dramatically after mammalian infection.

- The Western blot (one of the 2 tiers) has low sensitivity in early infection, high technical complexity, and subjective interpretation when scored by visual examination.

- The targets used to determine infection are known to cross-react with other organisms.

- The test looks for antibodies to Borrelia and cannot determine whether the infection is past or present.

Better methods exist, but despite numerous research reports and even government-sponsored panels calling out the inadequacy of the 2-tier method, it remains the standard of care.

If you think you have Lyme, find a Lyme-literate doctor.
DEMAND BETTER.

This , I want to shout out to all the caregivers out there, most of whom are women. Caregivers provide an average of 20 hrs/week of unpaid care ON TOP of their professions and family demands.

So this , thank a caregiver. Send them a card, buy them a coffee, and take care of THEM for a change. They may not ask for help, but they can use it.