Joe Rogan Asked the Question. Patients Have Been Asking It Too."Is it worth it?"

Nearly every week, someone reaches out to Tick Bite Data with the same question.

"Should I do SAAT?"

For individuals living with Alpha-gal Syndrome, the question is rarely about acupuncture itself. It is about the possibility of reclaiming a life that changed after a single tick bite. After months—or in many cases years—of restrictive diets, emergency room visits, delayed diagnoses, persistent symptoms, and the constant uncertainty surrounding the next reaction, the promise of returning to some sense of normalcy is understandably compelling.

That same question recently reached a national audience during an episode of The Joe Rogan Experience, when investigative journalist Annie Jacobsen and Joe Rogan discussed Alpha-gal Syndrome and Soliman Auricular Allergy Treatment (SAAT). As the conversation turned to reports of high remission rates, Rogan paused and acknowledged something many patients have quietly wondered.

"I don't know who did the study."

His comment wasn't a dismissal of SAAT. It was an acknowledgment that, despite growing public interest and thousands of patient testimonials, many of the questions surrounding long-term outcomes remain unanswered.

That moment resonated because it reflects the position many Alpha-gal patients find themselves in today. They hear remarkable stories from people whose lives have changed after treatment. They read accounts from individuals who are once again able to enjoy foods they had avoided for years. They also encounter guidance from board-certified allergists and major medical organizations stating that there is currently insufficient clinical evidence to conclude that acupuncture permanently eliminates alpha-gal IgE sensitization or cures Alpha-gal Syndrome. Between those two perspectives sits the patient, trying to determine whether spending hundreds of dollars—often entirely out of pocket—is a worthwhile investment.

This is not simply a conversation about alternative medicine. It is a conversation about informed healthcare decisions. Patients are not choosing between competing philosophies; they are weighing financial costs, potential benefits, unanswered questions, and the hope of regaining a quality of life that many feel was taken from them overnight.

At Tick Bite Data, we are not interested in telling patients whether they should or should not pursue SAAT. Our role is to understand what patients are experiencing, identify patterns that deserve further investigation, and ask the questions that matter most to the community we serve. Over the past year, one thing has become increasingly clear: patients are not just asking whether SAAT works. They are asking how success is defined, how long improvements last, what happens after another tick bite, and whether anyone is systematically tracking those outcomes over time.

Those questions deserve thoughtful, evidence-based answers.

Because when hope becomes a healthcare product, transparency becomes an ethical responsibility.

The Cost of Hope

For many individuals living with Alpha-gal Syndrome, the decision to pursue SAAT is not made lightly. By the time patients begin exploring treatment, many have already spent months—or years—managing restrictive diets, navigating repeated medical appointments, researching hidden mammalian ingredients, and adapting nearly every aspect of daily life around the possibility of another reaction. Treatment becomes more than another healthcare decision; it becomes an investment in the possibility of reclaiming a life that once felt ordinary.

Our survey reflects that reality.

Among respondents who underwent SAAT, the overwhelming majority reported paying for treatment entirely out of pocket, with insurance coverage being uncommon. Most respondents reported spending between $250 and $499 per treatment, while others reported costs exceeding that range depending on the provider and treatment plan. For many families already absorbing the ongoing costs associated with Alpha-gal Syndrome—including specialty foods, medications, physician visits, laboratory testing, and emergency preparedness—SAAT represents a significant additional financial commitment.

Unlike many conventional medical treatments, however, patients are often making that investment without standardized long-term outcome information to help guide their decision. Testimonials describing meaningful improvement are readily available, yet questions regarding recurrence, retreatment, durability of benefit, and long-term follow-up remain difficult to answer. Before investing hundreds or even thousands of dollars pursuing treatment, patients deserve access to the clearest picture possible—not only of the potential benefits, but also of the limitations and uncertainties that still exist.

What Our Survey Is Beginning to Show

Since launching our Alpha-gal Syndrome Ongoing Treatment survey, one goal has remained constant: to better understand the real-world experiences of patients pursuing therapies that extend beyond traditional management strategies. While patient-reported data cannot establish cause and effect or determine whether a treatment is responsible for an individual's outcome, it can identify patterns, generate important research questions, and provide insight into the experiences patients are having outside of a clinical setting.

Our findings suggest that SAAT is producing meaningful improvements for many patients—but not all.

Some respondents describe significant improvements following treatment and report that they continue to experience those benefits months or even years later. Others report temporary improvements that gradually diminished over time. Still others report little or no improvement despite undergoing treatment. These varied experiences underscore an important point: patient outcomes are not uniform, and there is currently no reliable way to predict who will experience lasting benefit and who may not.

Cost also emerged as a consistent theme throughout the survey. Most respondents reported paying for treatment entirely out of pocket, with the majority spending between $250 and $499 per treatment. Insurance reimbursement was uncommon, meaning patients frequently assume the full financial responsibility themselves. For many families already navigating the ongoing costs associated with Alpha-gal Syndrome, this represents a significant healthcare investment made with the hope—not the guarantee—of meaningful improvement.

Perhaps one of the most intriguing patterns to emerge involves recurrence. Among respondents who reported that their symptoms eventually returned, another tick bite was the most commonly identified event preceding that recurrence. A smaller number of participants also associated the return of symptoms with major illnesses, surgery, COVID-19, significant physiological stress, or other immune challenges. Although these observations cannot establish why symptoms returned, they raise important questions about the durability of treatment and the role that subsequent immune events may play in influencing long-term outcomes.

Equally important is what our survey cannot yet answer.

At this stage, our data cannot determine whether SAAT permanently alters alpha-gal sensitization, temporarily modifies the immune response, or simply provides symptom relief for a period of time. Likewise, we cannot determine whether improvements extend beyond allergic reactions to mammalian products or whether they also affect the broader neurological, gastrointestinal, cardiovascular, and inflammatory symptoms that thousands of Alpha-gal patients continue to report through our other surveys.

These limitations are not weaknesses of the data—they define the next phase of research. Every emerging therapy begins with observations that generate better questions. Our survey suggests that those questions are becoming increasingly clear.

Patients are not simply asking whether SAAT works. They are asking how well it works, for whom it works, how long those benefits last, what factors contribute to recurrence, and whether today's improvements remain meaningful years later. Those are questions that can only be answered through continued data collection, long-term patient follow-up, and transparent reporting of outcomes.

What Does Success Actually Mean?

One of the most important questions surrounding SAAT may also be the one discussed the least. How is success actually being defined?

For many patients, success is understandably measured by one milestone: the ability to eat mammalian meat again without experiencing an allergic reaction. After months or years of carefully avoiding beef, pork, dairy, gelatin, medications containing mammalian ingredients, and countless other exposures, being able to enjoy a meal without fear can feel nothing short of life-changing.

But Alpha-gal Syndrome has become increasingly recognized by patients as far more than a food allergy.

Across thousands of responses submitted to Tick Bite Data, individuals consistently describe symptoms affecting multiple body systems, including persistent fatigue, brain fog, gastrointestinal distress, joint pain, dizziness, headaches, anxiety, rapid heart rate, muscle pain, and a host of other symptoms that often continue even after strict dietary avoidance. While research continues to investigate the mechanisms behind these symptoms, their impact on quality of life is undeniable.

This raises an important question. If a patient regains the ability to eat a hamburger but continues to struggle with debilitating fatigue, neurological symptoms, chronic gastrointestinal issues, or inflammatory pain, should that treatment be considered a complete success?

The answer may depend on who is being asked.

For a provider whose primary goal is restoring food tolerance, the treatment may be viewed as highly successful. For a patient who hoped to return to work, regain their energy, think clearly again, or simply wake up feeling well, the answer may be far more complicated. Neither perspective is necessarily wrong, but they measure success differently.

That distinction matters because it shapes patient expectations before treatment ever begins. If success is defined only by the absence of an allergic reaction to mammalian foods, patients should understand that definition before deciding whether to pursue treatment. Likewise, if broader improvements in neurological, gastrointestinal, cardiovascular, or inflammatory symptoms are expected, those outcomes should also be measured and reported consistently.

Our current survey cannot answer those questions with certainty. While many respondents report meaningful improvements following SAAT, the survey was not designed to determine whether improvements occurred exclusively in allergic reactions or across the broader spectrum of symptoms associated with Alpha-gal Syndrome. That distinction represents an important opportunity for future research and highlights the need for more comprehensive long-term outcome studies.

Ultimately, patients deserve more than a simple success rate.

They deserve to understand what improved, what didn't, how those improvements were measured, and whether they remained meaningful months or years after treatment. Only then can individuals make fully informed decisions about whether the potential benefits align with their own expectations, symptoms, and goals for recovery.

Where Are the Long-Term Outcomes?

One of the most surprising findings during our review was not what we discovered—it was what we struggled to find.

As interest in SAAT continues to grow, patients have no difficulty finding testimonials, practitioner websites, and stories describing remarkable improvements following treatment. What proved far more difficult to locate were standardized, publicly available long-term outcome data that answer the questions patients continue asking long after treatment has ended.

How many patients remain symptom-free one year later?

Three years later?

Five years later?

How many experience recurrence following another tick bite? How many undergo retreatment? How many continue carrying epinephrine despite feeling well? How many report improvements extending beyond food tolerance to neurological, gastrointestinal, cardiovascular, or inflammatory symptoms?

These are not abstract research questions. They are the practical questions patients ask before deciding whether to invest hundreds or thousands of dollars in treatment.

Our survey begins to provide insight into some of these questions. Among respondents whose symptoms later returned, another tick bite emerged as the most commonly reported event preceding recurrence. While patient-reported experiences cannot establish causation, they identify a pattern worthy of further investigation. If subsequent tick bites influence long-term outcomes, understanding that relationship is essential to helping patients make informed decisions before treatment—not after symptoms unexpectedly return.

Long-term follow-up serves a purpose beyond measuring success. It reveals patterns, identifies limitations, refines treatment recommendations, and establishes realistic expectations for future patients. Most importantly, it helps distinguish between short-term improvement and durable clinical outcomes. As interest in SAAT continues to expand, systematic follow-up should evolve alongside it. Doing so would strengthen not only the evidence supporting treatment, but also the confidence of the patients considering it.

The Cost of Uncertainty

Financial cost is only one part of the equation. Every healthcare decision also carries the cost of uncertainty.

For patients considering SAAT, some of the most important questions arise not before treatment, but months—or even years—afterward. If symptoms improve, should they continue carrying an epinephrine auto-injector? If another tick bite occurs, does the risk of recurrence change? If symptoms return unexpectedly, are patients prepared to recognize that recurrence before experiencing another delayed allergic reaction?

These questions are especially important because Alpha-gal Syndrome behaves differently than many other food allergies. Reactions are often delayed, sometimes occurring several hours after exposure, making it more difficult for patients to immediately recognize what is happening. A patient who believes their Alpha-gal Syndrome has resolved may gradually reintroduce mammalian products into their diet or become less vigilant about emergency preparedness.

How often does this occur?

At present, we do not know.

That uncertainty should not discourage patients from considering treatment. Instead, it highlights why long-term follow-up and standardized outcome reporting are so important. Understanding what happens after treatment—including after another tick bite—allows patients to make decisions based not only on hope, but also on realistic expectations.

Imagine a patient who undergoes treatment, experiences months of improvement, and gradually believes their Alpha-gal Syndrome has resolved. They begin eating mammalian products again, stop carrying an epinephrine auto-injector, and move forward with their life. Months later, they are bitten by another tick. If symptoms quietly return, the next allergic reaction may not come with warning. It may occur hours after dinner, when Alpha-gal Syndrome behaves exactly as it always has.

We do not yet know how often this scenario occurs following treatment.

That is precisely why long-term follow-up matters.

When Hope Becomes a Healthcare Product

Every healthcare decision is built on trust.

Patients expect honest conversations about the potential benefits of treatment, the known risks, the limitations of available evidence, and the questions that medicine has not yet answered. That is the foundation of informed consent.

Innovation has always required a willingness to explore new ideas before every answer is available. Alpha-gal Syndrome is no exception. For many patients, SAAT represents one of the few therapies offering the possibility of improvement beyond lifelong avoidance of mammalian products. It is understandable that interest continues to grow.

Hope, however, should never replace transparency.

When patients invest hundreds—or even thousands—of dollars out of pocket for healthcare, they deserve more than encouraging testimonials. They deserve to understand how success is defined, how long patients have been followed, what is known about recurrence, how often retreatment is required, and where the evidence remains incomplete. These expectations are not unique to acupuncture; they are the same standards patients would reasonably expect from any healthcare intervention.

Transparency does not undermine innovation.

It strengthens it.

The treatments that earn the greatest trust are those willing to openly discuss both their successes and their limitations. Honest conversations about uncertainty allow patients to make informed decisions based on realistic expectations rather than assumptions.

As interest in SAAT continues to expand, the conversation should evolve beyond whether patients report improvement. The more important question is whether patients have enough information to understand what those improvements are likely to mean months—and years—after treatment.

When hope becomes a healthcare product, transparency becomes an ethical responsibility.

An Opportunity to Lead Through Transparency

Alpha-gal Syndrome remains one of the newest and least understood allergic conditions affecting patients today. Over the past decade, physicians, researchers, advocacy organizations, and patients have all contributed to expanding our understanding of this complex disease. Much of what is known today began with clinicians observing patterns, researchers asking new questions, and patients sharing experiences that challenged conventional thinking.

SAAT now finds itself at a similar crossroads.

Patient interest continues to grow, public awareness is expanding, and conversations that were once limited to small support groups are now reaching national audiences. As more patients begin exploring treatment, the opportunity exists to move beyond individual testimonials and begin building the long-term evidence that patients have been asking for.

Imagine if treatment providers across the country collaborated to answer the questions that continue to surface in our surveys.

What percentage of patients remain symptom-free one year after treatment?

How many continue to do well after three years? Five years?

What percentage require additional treatment following another tick bite?

Do neurological, gastrointestinal, cardiovascular, and inflammatory symptoms improve alongside food tolerance, or do they follow a different course?

How many patients continue carrying an epinephrine auto-injector despite successful treatment, and what guidance are they receiving regarding future tick exposures?

These questions are not intended to challenge the effectiveness of SAAT. On the contrary, they represent an opportunity to strengthen confidence in the treatment by replacing uncertainty with measurable outcomes. If long-term results continue to support the improvements many patients describe today, those findings deserve to be documented, shared, and celebrated. If important limitations emerge, patients deserve to understand those as well. In either case, transparency benefits everyone.

One of the greatest strengths of the Alpha-gal community has always been its willingness to share knowledge. Patients routinely help one another navigate medications, identify hidden mammalian ingredients, recognize symptoms, and adapt to a condition that often leaves them feeling isolated. That same spirit of collaboration has the potential to move research forward.

Tick Bite Data believes the next chapter should focus not only on whether patients improve following treatment, but on how those improvements evolve over time. Long-term patient registries, standardized follow-up, and collaboration between practitioners, researchers, and patient organizations could answer many of the questions that remain unresolved today. More importantly, they could provide future patients with the information they need before making significant financial and healthcare decisions.

This is not a call for more marketing.

It is a call for more measurement.

Not because patients doubt the experiences being shared today, but because every patient deserves to understand what those experiences look like tomorrow, next year, and five years from now.

The future of Alpha-gal Syndrome research will not be defined by the loudest voices or the strongest opinions. It will be defined by the quality of the data we are willing to collect, the transparency with which we share it, and our collective commitment to ensuring that hope is always accompanied by evidence.

The Work Is Just Beginning

If there is one conclusion that has emerged from our surveys, it is this: patients are asking better questions than we are currently equipped to answer.

They want to know whether SAAT is worth the financial investment. They want to understand how long improvements typically last, what happens after another tick bite, whether retreatment produces the same results, and whether improvements extend beyond food allergies to the broader constellation of symptoms that so many individuals with Alpha-gal Syndrome continue to experience.

These are not questions that can be answered through individual testimonials or isolated success stories. They require time. They require collaboration. Most importantly, they require the ability to follow patients over months and years rather than weeks.

A prospective longitudinal study following patients before treatment and at regular intervals afterward would provide a far more complete picture of the patient experience. By documenting changes in food tolerance, symptom burden, quality of life, recurrence after additional tick bites, and the need for retreatment, researchers could begin answering many of the questions that patients ask every day. That type of work has the potential to benefit not only those considering SAAT today, but every patient diagnosed in the years ahead.

At Tick Bite Data, this is a study we would welcome the opportunity to undertake.

As a small, self-funded organization, however, we currently lack the infrastructure and financial resources necessary to conduct a large-scale, prospective longitudinal study of this nature. Despite those limitations, our commitment to patients has never changed. Every survey completed, every experience shared, and every story entrusted to us contributes to a growing database that is helping identify patterns, generate new research questions, and provide meaningful information for patients making difficult healthcare decisions.

Our surveys are not intended to replace clinical research. They are intended to bridge the gap until more comprehensive research becomes possible.

We remain hopeful that future collaborations with clinicians, researchers, treatment providers, academic institutions, and funding partners will make long-term outcome studies a reality. Until then, patient participation remains one of the most valuable resources available to our community. Every completed survey strengthens our understanding of Alpha-gal Syndrome and brings us one step closer to replacing uncertainty with evidence.

Whether a patient ultimately chooses to pursue SAAT or not, the decision should be informed by the most complete information available—not just about the potential benefits, but also about the questions that remain unanswered.

That has always been the mission of Tick Bite Data.

To listen.

To learn.

To ask the difficult questions.

When hope becomes a healthcare product, transparency becomes an ethical responsibility. Building that transparency begins with data—and every patient who shares their experience helps move us one step closer to the answers we all seek.