Nikki's Story: Bitten by a tick at 19, diagnosed at 39. It was never "just anxiety."

Nikki was 19 when a tick bit her. She never went to a doctor for it.

"I simply burned it out with a cigarette (never do this) and carried on with my life... I was never treated."

She is 43 now. For most of the years in between, she was collecting diagnoses like Pokémon cards. No treatments were working and no doctor knew what to do next. An experience Nikki related to a game of symptom whack-a-mole, where doctors would try to alleviate symptoms as they popped up instead of addressing and finding the root cause.

"By the time I was 22 I was chronically ill and really struggling with the day to day. I spent years upon years, dollars upon dollars, seeing doctor after doctor, only to generate what seemed like an endless pile of diagnoses."

She saw cardiologists, GI specialists, a hematologist, urologists, a urogynecologist, psychiatrists, psychologists, therapists, family physicians, neurologists, pulmonologists, a pelvic floor therapist, a physical therapist, a sleep doctor. By her own count, more than 20 providers. Countless procedures, a few surgeries, many trips to the ER. Each visit produced another diagnosis, another prescription, another piece that did not connect to the rest.

"I went through the brush-offs, the gaslighting, the 'it's just anxiety, take this SSRI/Benzo and call us in the AM' hubbub."

For Nikki, the illness was only half of it. The other half was how she was treated while she had it.

"Not being believed, being gaslit, being disregarded, being resented. Having to mask so you do not impose discomfort on others. Being expected to function as though you are not ill, which is brutal. People not giving you grace for trying your damn best. Feeling like you need to earn rest."

It cost her jobs in her twenties. It strained friendships and ended relationships. Some treatments landed her in the hospital, and the medical trauma that came with all of it made every new option harder to try.

"Health is the utmost form of wealth. When you don't have your health it can be extremely isolating. Watching the world carry on while you relive the same pain-stricken day over and over. You long for a version of yourself you hardly remember, you feel like an empty shell, you question the why and what for."

The turn came after her second bout of Covid. Barely able to function, she decided to explore integrative medicine. A chronically ill therapist, who also has Lyme+, urged her to try a clinic she has now been a patient with for years. At her first appointment, Nikki mentioned the tick bite from more than two decades earlier.

"I started connecting the dots... My health really did start to nose-dive after that bite."

Her provider asked a question nobody else had: was this more than Long Covid? They drew the bloodwork.

"Lo and behold, I tested positive for Lyme and Bartonella. I was bit again a few years ago, have continued to receive additional diagnoses, but now I know the root cause."

Twenty-plus years after the bite, she had a name for it.

What she did not have was a map. Lyme+ treatment is expensive, uncertain, and full of protocols that promise a lot. Nikki has been careful about which ones she tries.

"I have avoided insanely high ticket protocols as the lack of guarantee for improvement is concerning. I have medical PTSD, which makes me hesitant."

So she did what most Lyme+ patients eventually do. She found the community.

"I have learned more about Lyme+ through support groups than I have from Google, books, and doctors. No one researches as hard as someone who is going through it. Following alongside the journey of others, seeing their testimonials and feedback, has not only been educational... it's been empowering!"

A diagnosis does not simplify a protocol. Nikki's is hefty and always changing: seven or eight time slots a day for medications and supplements, each with its own rules about food, spacing, and what cannot be taken together. She was using a basic medication reminder app, which told her what to take and when, but nothing about whether any of it was working, and nothing about Lyme+.

Then she saw a post in a Facebook group. Two siblings, Payton and Carter, both living with Lyme+ themselves, were looking for beta testers for something they were building.

"I immediately felt a burst of excitement and thought 'What an extraordinary opportunity, I want to be a part of it!' When Payton and Carter took me on as a beta tester I was stoked. I knew I was part of something huge."

The fact that the founders had lived it mattered as much as the product.

"The fact that both of the developers/owners have first hand experience with Lyme+ was a huge green flag for me. You don't really get it till you get it, and they get it!"

What she found was the tool she had been missing. The first thing it fixed was the thing that overwhelmed her most.

"My protocol is ever changing and hefty... I usually have about 7 to 8 time slots in a day where I have to take meds and supplements. I have gotten overwhelmed trying to create a schedule where it's conducive to my busy life and doesn't cause conflict with other meds. Ella helps me figure out a non-conflicting schedule when I feel beyond overwhelmed and can't figure it out on my own."

When her zinc deficiency was not improving despite daily supplements, Ella looked at the timing and helped her adjust. When she switched to an AIP diet and could not pinpoint what was causing discomfort, Ella helped her work through it day by day. Over time, Ella started surfacing patterns in what triggered her flares.

The questions she used to save up for an appointment, or pay for a virtual visit to ask, she can now ask between visits.

"I have been able to avoid extra appointments or virtual visits due to questions that Ella can easily help me with."

She estimates it has saved her a few hundred dollars so far, and far more in time.

"It is the tool I wish I had access to years ago."

Today Nikki lives her life alongside her Lyme+ diagnosis, not on hold because of it, and LymeLess helps make that possible. She describes feeling more in control of her healing than she has in years. Asked what she would miss most if LymeLess disappeared tomorrow, her answer is simple: the daily treatment check-off. The small thing that keeps a hefty protocol on track.

And the community that carried her for two decades is now something she gives back to.

"I was gifted access to priceless resources through support groups, as a result it ignited a spark to get involved. LymeLess has been my tangible way of participating in how the world views and treats Lyme+."

What stands out in Nikki's story is not the diagnosis. It is the twenty years before it. She kept going through the eye rolls and the brush-offs, through treatments that put her in the hospital, through jobs and friendships lost to an illness nobody would name. She did the research when the research was supposed to be someone else's job. And when she finally found her answer, she turned around and started building something for the people still looking for theirs.

That is not luck. That is resilience, the quiet kind that shows up every day for twenty years without anyone noticing. Nikki noticed. She is still here, still showing up, and is a role model for all Lyme+ patients. Her story will inspire thousands of people that find themselves in her same shoes to keep moving forward. LymeLess exists to empower patients on journeys like Nikki's. So that nobody has to spend twenty years asking a question nobody will take seriously, and so that once you have the answer, you have a tool built by people who actually get it to help you confidently advocate for yourself and navigate your next steps.

Because, as Nikki put it best, "chronically ill people just want to be seen and heard. It really is that simple."

Disclaimer: Nikki’s story reflects her personal experience and is not medical advice.