United By Lyme

04/02/2026

Remember to take your medicine. ♥️ ~ Nanea

04/02/2026

This is so important to read. I've seen this myself. The unfortunate thing is that so many Lyme patients are so desperate for information, especially given how long we've been gaslit...please, do some of your own research before believing everything you hear. Check resources, question the information, use your judgement. I know it's hard, and really it makes me furious to see how much of this is happening, but be diligent.

Lyme disease is becoming a trending topic online.

Unfortunately, that also means an explosion of misinformation.

Right now social media, influencers, mainstream media, and even some medical voices are flooding the internet with content about Lyme disease. Some of it is helpful. Much of it is not.

We are seeing everything from:

• miracle cure claims
• statements that Lyme disease isn’t real
• oversimplified treatment advice
• influencers creating content for clicks
• doctors suddenly positioning themselves as experts despite historically dismissing patients

At the same time, pharmaceutical companies are moving forward with new vaccines that represent a massive financial opportunity. When that much money enters a space, messaging and narratives often shift quickly.

For patients who are already navigating a complex illness, this environment can be overwhelming.

Not every voice speaking about Lyme disease is informed.

Not every viral post is accurate.

And not every “expert” has experience treating chronic tick-borne illness.

If you live with Lyme disease, protecting your nervous system and your mental health matters.

Be thoughtful about where you get information.

Follow sources that prioritize patient outcomes, scientific curiosity, and honesty about what we still do not know.

The Lyme community deserves clarity, compassion, and integrity.

Not rage bait.

We deserve better than to be monetized, turned into click bait, and stripped of our humanity for the almighty dollars of large corporations.

The Lyme community has been used as pawns long enough.

03/31/2026

03/31/2026

Yesterday, I attended the Lyme Resilience Collective monthly group, hosted by Sami Kirschbaum. I'm so glad I did. I've attended a few different Lyme disease support groups over the years, and they all have their differences and approaches, all valid and worthwhile. But, I really enjoyed the structure of Sami's group. I had the pleasure of meeting Lyme warriors from all over the country (16 of them all in one group chat!!) and loved the guided inner reflection portion of the meeting. It felt very uplifting and relaxing. If you're looking for some community, connection and/or are striving for some inner peace, you should check it out!

Join the Next Monthly Resilience Gathering FREE COMMUNITY GROUP A free, one-hour online support space for chronic illness warriors, a […]

03/31/2026

I had to share this today because I just had a crazy realization. I'm six years into remission and I am still struggling to feel excitement and allow joy in my life. Let me explain a little further. First, the realization...this morning as I was waking up I felt joy and excitement as I lay there deciding what I was going to wear today. This sounds weird, I know, but that's because you have to know that I'm a bit of a clothes horse. I don't consider myself materialistic but I love clothes. I would have a closet as big as my bedroom if I was rich. Like, Carrie Bradshaw style closet. Alas, I'm not rich but I still love to look cute, styley, fashionable. I remember waking up, pre-Lyme disease, excited about my outfit for the day. Today is the first day I really remember feeling that way for a long time. Hence, the realization that my capacity for joy and excitement is still catching up on lost time. So, in a very long-winded way, I'm encouraging you to find ways to keep your capacity for joy and excitement. Even amidst the trials and tribulations that is treating Lyme disease, remember joy. Remember excitement. It's harder to get back than you might think if you let go of it. So much love to you all!!

03/31/2026

Okay, I finally got around to writing about this, inspired by the approaching full moon and all the inquiries I see about it.

I literally started writing this post almost three years ago to the day. "Does the full moon make you feel worse?", is probably one of the most common questions I...

03/30/2026

03/30/2026

This is definitely not all the meds from my 2 1/2 years of treatment, but it's what was left at the end. I remember counting once, and at breakfast alone, I was swallowing 23 pills. That doesn't count meds I took with lunch, dinner, before bed and the binders between meals.

03/27/2026

Medical PTSD (trauma due to repeated negative experiences with docs & other medical providers & settings) is a painful struggle on its own— but it can be particularly dangerous, because it reinforces hopelessness & avoidance around medical support & care we might desperately need.