Lining Up The Suspects: Uncovering the True Cost of Misdiagnosis-Part 2

Sylvia Reisman- Age 18

This blog post is the second installment in a series inspired by a true story. Be sure to read "The Price of Misdiagnosis, Part I" (published on February 24, 2025) before proceeding with this post.

According to the NATIONAL HEALTH COUNCIL, autoimmune diseases affect approximately 50 million Americans. However, given the complexity of diagnosing these conditions, this number is likely an underestimate. Even more alarming, autoimmunity is reaching epidemic levels, with some studies estimating an increase of 3-13% annually.

Another astounding statistic noted by the NATIONAL HEALTH COUNCIL

• Between 2006 to 2021, the prevalence of inflammatory bowel disease (IBD) increased 46%!

  
  

In Lauren's situation (as outlined in part one of this blog series), she received a diagnosis of Inflammatory Bowel Disease at the age of 33. However, she consistently questioned whether she truly had ulcerative colitis. 

After enduring severe flare-ups for 12 years that significantly affected her quality of life, Dr. H. provided Lauren with a new specialized laboratory test to ascertain whether she truly had IBD. The lab results revealed that Lauren was NEGATIVE for IBD!

Although Dr. H was kind to offer the new, specialized lab test to Lauren, he ignored her grave concerns about a developed intolerance to aspirin compounds from her long-term IBD medication.

Instead of being empathetic and honest that he didn't have a solution (or offer to investigate), he stated that he highly doubted she had an allergy to Asacol. His lack of attention and urgency for Lauren's valid health concerns forced her to take prednisone (a steroid) for a month and caused her to experience a life-threatening medication reaction.

Taking prednisone caused Lauren to experience violent abdominal spasms, full body and limb muscle jerks, insomnia and systemic overstimulation. She felt like she was going to have a nervous breakdown and die. This wasn't all in her head and this time, her life was at stake.

As a result of the prednisone severely suppressing Lauren's immune system, along with driving out a serious underlying, undiagnosed stealth infection, she developed extreme sensitivity to chemicals, most foods, cosmetic products, and even water-resulting in her weight plummeting to 105 pounds.

Taking an immune-suppressing steroid was akin to dousing Lauren with gasoline and lighting a match.

At this point, Lauren was extremely angry because Dr. H had neglected to properly treat her severe IBD flare-up when she specifically drove over five hours to see him for help. The resulting outcome was that Lauren almost had a colostomy because the lower part of her colon was so damaged from her severe flare-up.

Consequently, she decided to take her entire medical file and seek another gastroenterologist who would be more attentive to her situation.

Three years later, Lauren independently identified what she believed to be her undiagnosed condition as Lyme disease, which was subsequently confirmed through a specialized laboratory panel and consultation with a Lyme disease specialist in New York City.

The specialist she consulted with also advised her that, considering her history of growing up with cats and her clinical symptoms, he also believed she had Cat Scratch Disease (CSD) which is caused by a bacteria called Bartonella Henselae. Although CSD can also be transmitted by fleas or ticks to humans, we will learn more later in this story as to the details in Lauren's case.

When the Lyme specialist tried to treat Lauren for Lyme and Bartonella, It was extremely challenging. Lauren had been ill for so long and over twenty doctors had failed to diagnose her in Tampa Bay, Florida and Georgia before she was forced to travel to New York City.

Although her new specialist meant well, he was overloaded with patients and lacked knowledge on a condition that Lauren later discovered on her own was called mast cell activation. This was a major reason why Lauren couldn’t tolerate any treatments so she felt unheard and ripped off again.

Even though Lauren had seen approximately 25 physicians during an eight year span in three states, including a top functional medicine specialist in New York City, her health had still not improved. She spent an additional eleven years independently identifying multiple components of her complex health issues, including dental and environmental factors.

November 2012

The Fallout From Misdiagnosis in Complex illness

To understand why my high-performing clients retain me, it helps to first see just how common and impactful misdiagnosis can be in the U.S.

According to a study conducted by a team of Texas based researchers, approximately 12 million adults who visit U.S. doctor's offices and other outpatient settings, or one in 20 are misdiagnosed annually. This study was published by BMJ Quality and Safety in 2014. Based on my personal experience, I believe this figure is most likely underestimated, as 50% of my immediate family experienced misdiagnosis

In Lauren's situation, as with any complex case involving multiple practitioners, each is focused on a specific organ system. Physicians adhere to their areas of expertise due to liability concerns and their specialized medical training.

Adding insult to injury, large healthcare systems push physicians to see up to sixty patients per day which translates to poor quality care and no attention to a suffering patient who needs a correct diagnosis.

The average physician simply doesn't have time to conduct a zoom call with all of your physicians to review all of the evidence and "line up all the suspects."

So who is Lauren and what does lining up the suspects mean?

Lauren is actually me and the reason I started my concierge health advocate practice. During my long medical journey, I became quite the detective so here is my mystery diagnosis case.

In my family, we always had a cat, and as a teen, I often allowed our cat to bite and scratch me. My mother, who was a nurse, would caution me, saying, "Don't let the cat scratch you, or you might contract cat scratch fever!"

Yours truly (age 18), the prime suspect (middle photo) and after a recent 12 mile bike ride

During my freshman year of college, I became extremely ill. It was initially misdiagnosed as mononucleosis. Consequently, I had to withdraw from school for a quarter, and I continued to face health challenges following this incident.

I was misdiagnosed again in the late 1990's with inflammatory bowel disease that was actually gastrointestinal inflammation from cat scratch fever. I took IBD medications for over ten years and discovered in 2009 that I was negative for IBD.

Thirty-one years after my first misdiagnosis, I was diagnosed correctly.

I actually had Bartonella Henselae (cat scratch disease, a stealth bacterial infection) and it had disseminated through my gastrointestinal tract, brain and vascular system.

Did you hear what I said? It went to my brain!

Almost twenty years ago, the Bartonella Henselae bacterial infection had infiltrated my brain, nerves and blood vessels, affecting my central nervous system.

My severe body, muscle and limb jerks that prevented me from sleeping day or night for years were caused by a perfect storm of neurological inflammation, immune system overactivation and nervous system dysregulation triggered by chronic, undiagnosed Bartonella Henselae (cat scratch disease).

The intense reaction that occurred when taking prednisone (steroid) was due to a neuroimmune crisis, triggered by the immunosuppressive effects of prednisone which weakened my immune system's ability to control Bartonella, allowing it to spread and provoke widespread neuroinflammation.

The medication also aggravated nervous system dysfunction, amplifying my severe myoclonus (body, limb and muscle jerks) and panic surges. It activated mast cells, worsening histamine and cytokine release, which further inflamed nerve pathways and intensified muscle jerks.

I hope every physician and nurse reads this, as well family members who have a current or past exposure to cats, fleas (past or present) or ticks.

Please note that conventional testing for this bacterial infection may lack accuracy. It is important not to accept a negative result if you are experiencing clear symptoms, such as depression, mood changes, insomnia, low-grade fevers, gastrointestinal issues, or seizure-like body jerks.

Due to being misdiagnosed twice and receiving a 31 year delayed diagnosis, I experienced years of unnecessary physical, emotional, and financial suffering.

As a lifelong athlete, this situation profoundly affected my ability to fully participate in sports for years or otherwise suffer serious repercussions (seizure movements and insomnia). I was also unable to engage in social activities due to severe multiple chemical sensitivity, went into isolation for a few years and my professional career was disrupted for years.

Translation: Quality of life= ZERO

The question remains: How do you quantify the value of one's quality of life?

My journey from hell is why I am passionate about what I do.

You can be a millionaire or billionaire but if you lose your quality of life, you have NOTHING. The sloppiness, poor communication and disconnect in my personal healthcare journey inspired me to develop my proprietary Strategic Health Assessment, which serves as a critical tool for evaluating my complex clients.

As a Private Health Advisor, while I don't provide medical diagnoses, advice, or treatment, I am a highly experienced consultant dedicated to helping individuals secure accurate diagnoses. With 20 years of experience as a health detective, I have successfully identified and resolved my own medical challenges and assisted others who had previously consulted multiple doctors without resolution. I have a firsthand understanding of how these errors and oversights occur, and believe me, they happen daily!

Who I Serve: Strategic, Driven, and Health-Conscious Individuals

My clients are high-performing individuals-executives, athletes, entrepreneurs and their families- who seek a trusted private health advisor to navigate complex health challenges and avoid misdiagnosis.

How My Strategic Health Assessment Helps High-Performing Clients Avoid Misdiagnosis

My proprietary Strategic Health Assessment is a personalized, intensive process designed for individuals who:

• Are experiencing complex health challenges

  
  

• Have seen multiple physicians or practitioners without answers

  
  

• Are questioning a prior diagnosis

To learn more on how I help my motivated clients avoid being misdiagnosed at their doctor's office, contact me today to schedule a one hour paid phone consultation.

Remember, there is no price you can place on your quality of life! Your health is like an Olympic gold medal, priceless!

Blessings,

Sylvia Reisman

Founder & Principal Consultant

Purity Patient Advocates LLC

Note: I now refer to my practice as a private health advisor service

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