by Crystal A. Frost
AUG 23, 2024
The daily life of a Lyme warrior can be unpredictable and terrifying—whether it’s managing debilitating symptoms or navigating a healthcare system that rarely understands our needs.
So when my doctor told me in June, “Your Lyme treatments could be outlawed soon,” I knew another fight was on the horizon.
This time though, it wasn’t just about my health. It was about standing up for every patient in California who relies on glutathione therapy, NAD+, and methylcobalamin.
The California State Board of Pharmacy (BOP) is trying to take dozens of natural compounds away from us. But they’ve messed with the wrong Lyme patient, and I’m fighting back.
The master antioxidant
For those of us with neurological Lyme disease, treatments like glutathione and NAD+ aren’t just beneficial—they’re our lifeline. Glutathione, the master antioxidant, is depleted by many illnesses including Lyme, which is why replenishing it through infusions is effective for so many.
This compound protects immune cells and helps clear out harmful toxins, reducing oxidative stress. NAD+ supports cellular repair, giving us a fighting chance against relentless fatigue and brain fog. Methylcobalamin, the active form of vitamin B12, is crucial for nerve repair and cognitive function. These treatments are not luxuries. They’re essential.
The BOP’s proposed regulations would severely limit—and, in many cases, end—access to legal Category 1 sterile compounds on the FDA 503A bulks list. If these regulations pass, Lyme patients across California could lose access to treatments that make life bearable. The worst part? The BOP has not provided a single legal, scientific, or safety-based reason why California patients should be treated differently than those in the rest of the United States.
The moment that sparked the fight
When I first heard the news from my doctor, it knocked the wind out of me. I’m no stranger to fighting, but this is different; this is a fight with no explanation. The compounds on Category 1 have an excellent safety track record, which is why they have the green light from the FDA.
In fact, patients like me often turn to these alternative medicines when standard drug therapy fails. Why does California want to supersede the FDA and deprive sick patients of treatments that work? This regulatory board exists to protect us but is instead threatening our access to the very treatments that keep us alive.
Teaming up: the birth of “Stop The BOP”
I’m not alone in this fight. At the June 18 public hearing, I learned that Jacqui Jorgeson, founder of the Volunteer Fire Foundation in Sonoma, is facing a similar battle. Jacqui’s foundation co-administers a detoxification pilot program for firefighters who face severe toxic exposure in the line of duty.
Like many of us with Lyme, California firefighters under major oxidative stress have found incredible relief in nebulized and intravenous glutathione therapy. In fact, the results from Round 2 of the pilot study showed an 85.1% reduction in environmental toxins—a true testament to the effectiveness of glutathione therapy.
When Jacqui and I connected after hearing each other’s testimonies, it was clear we were fighting the same enemy: Board of Pharmacy overreach.
Together, we launched Stop The BOP, a movement to protect patient access to these vital treatments. We started with a petition in July, and it quickly gained traction, reaching 2,000 signatures in the first month.
As of August 22, our petition has over 2,600 signatures, and our movement is publicly backed by organizations like LymeDisease.org, the Center for Lyme Action and the California Naturopathic Doctors Association.
Why this fight is personal
Before falling ill in 2020, I was a recent PhD graduate, composing music and writing articles for the GRAMMYs. I was happily engaged to my now-husband, Bram.
But when Lyme disease took over my body, it sent us off course onto an unexpectedly dark path. My brain inflammation became so severe that I was paralyzed in my left leg and arm, barely able to walk for months. The brain fog was so thick I would forget my own phone number and my friends’ names. I experienced daily anaphylaxis and constant vertigo, and for a while, I thought this was the end.
But through it all, treatments with glutathione therapy, NAD+, and B12 have been my lifeline, allowing me to reclaim pieces of my life.
If these treatments are taken away, what happens to the thousands of patients just like me? What happens if the BOP succeeds in making California the only state where these compounds are inaccessible?
For many of us, losing access to these treatments would mean a return to those darkest days—days when hope felt like a distant memory.
The broader impact: beyond Lyme disease
It’s not just Lyme patients and firefighters who will be affected. Imagine you suffer from ME/CFS and that NAD+ has finally given you the energy required to return to work. Imagine you have pernicious anemia and methylcobalamin therapy has finally restored you to healthy B12 levels. Now imagine that relief being snatched away by a regulatory board that doesn’t seem to understand—or care—about the consequences.
That’s the reality we face. It’s why Jacqui and I are so determined to fight back. It’s why we’re asking the Lyme community to stand with us. This isn’t just about a few compounds—it’s about our right to access the treatments we need to live our lives.
What you can do
We’re not giving up, and we need your help. Here’s how you can join the fight:
Sign and share the petition: If you haven’t already, please add your name to our petition. Every signature counts.
Contact Your Representatives: We’ve made it easy with templates on our website. Your voice can make a difference.
Spread the Word: Share this blog post, tell your friends and family, and help us get the word out. The more people who know about this, the stronger our movement becomes.
Voice your opposition at the 9/12 board meeting: Anyone is welcome to join the September 12 meeting online via webex or in person in Sacramento. Information and access links will be available on stopthebop.com/actnow.
Join the movement: Sign up, learn more, or donate to the cause at stopthebop.com.
Stay Informed: Follow @stop.thebop and @volunteerfirefoundation on Instagram for updates on our progress and ways you can get involved.
The strength to fight
You don’t know how strong you are until being strong is the only choice you have. For those of us with Lyme disease, that strength is something we’ve had to find over and over again. The California Board of Pharmacy might think they can push these regulations through without a fight, but they underestimate us. They underestimate the power of a community that knows what it means to fight for every ounce of health.
Together, we’re going to stop the BOP.
Follow us on Instagram @stop.thebop and @volunteerfirefoundation.
Crystal A. Frost is Southern California leader of Stop The BOP.
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This is indicative of what Lyme patients deal with on an ongoing basis. If a doctor can enhance your chances of recovery they don’t need an association board standing in their way. In this case, the add-ons aren’t expensive in the big scheme of things and can make all the difference for patients.
This happens because of the bias against Chronic Lyme Disease. The more doctors who deny that Chronic Lyme exists the government and insurance companies will refuse to pay for treatment. I don’t see this changing shortly because it’s all about money.
Melinda
Looking for the Light 