The Missing Piece: Uncovering the True Cost of Misdiagnosis-Part 3

This is part 3 of my blog series, Uncovering the True Cost of Misdiagnosis. If you haven't read the first two parts, you can start with Part 1 and Part 2.

Most people would never guess how horrible I felt in these photos.

Left: Tybee Island, GA, Dec 2007 | Middle: Empire State Building, Sept 2012 | Right: Savannah, GA, May 2012

Imagine taking 31 years to obtain a correct diagnosis, being an active, athletic person with a career and losing over twenty years of your life due to two misdiagnoses.  

The financial cost of not receiving a correct and timely diagnosis, along with appropriate treatment, extends beyond a straightforward mathematical calculation. How can you quantify your quality of life?

If you are unable to function physically, your emotional health is severely impacted. When you lose your quality of life, you lose relationships, your emergency and retirement funds, your career growth is gone, and your life is gone. You may have to sell off your stocks, home, investment properties, and athletic awards. If you are an active, driven person and additionally lose the ability to engage in athletic activities, it feels like a death sentence.

You will never hear financial expert Dave Ramsey offer a solution to prevent this from occurring except to advise everyone to purchase long term disability and long term care insurance.

Dave, while I appreciate your wisdom, it may not be suitable for high-performing individuals who experience unexplained illnesses and prefer not to depend on our fragmented healthcare system for an accurate diagnosis and treatment.

Now that you know that Lauren is actually me, my story didn't end with just a 31 year delay in a correct diagnosis of Bartonella Henselae (cat scratch fever).

When my hallmark neurological symptoms started in the fall of 2006, I had just returned from a weekend trip at Disney's Animal Kingdom Lodge with my former spouse.

I vividly remember we ate at the upscale hotel buffet two nights and it had a wide array of African dishes which contained pork and beef.

We both became ill simultaneously with a severe flu like illness. My spouse went to a nearby walk-in clinic for antibiotic therapy. Since I believed I had inflammatory Bowel Disease, I was fearful that taking antibiotics could cause a flare-up of my "condition." Therefore, I opted to not to pursue medical care.

I realized within a few weeks of returning from our Orlando trip that I was in serious trouble.

It was during this time that my symptoms evolved into a serious illness. My body and limb movements at sleep onset worsened. I was unable to sleep, night or day. My neck was hurting so badly that I couldn't find relief. I even purchased an expensive Brookstone pillow, hoping it would provide relief. Bright lights, noise and the sun bothered me so I felt like I was dying. I remember I had severe night sweats and developed what appeared to be bronchitis with a severe cough.

We lived in Tampa Bay and since we had only resided there for a few years, I wasn't well versed on what physicians were experienced and knowledgeable. I didn't even know what type of specialist I should see.

This is when my medical merry go round started. Doctor after doctor, they usually spent an average of 7-10 minutes with me and tried to hand me a band-aid medication to help my symptoms.

I decided to draft a detailed timeline of events and my symptoms to provide every physician who I consulted with.

My timeline included details of when my symptoms started right after the trip to Disney's Animal Kingdom Lodge.

Not one practitioner I saw in Florida or Georgia from 2006-2011 took an interest in reading my detailed patient timeline or putting on their investigator hat outside their specialty area of medicine. Not one offered to order any blood labs that might be associated with my severe body, muscle and limb jerks.

This included two neurologists in Tampa Bay and a young teaching physician at the University of South Florida. She would just look at me with a blank stare and say nothing.

Had any of these practitioners just conducted a google search (which they despise patients doing), they would have come across a parasitic infection called Toxoplasmosis. This infection can be acquired by eating contaminated or undercooked pork or meat.

It can also be acquired from infected cat feces when cleaning a cat's litter box. At the time, I did not own a cat so my best guess is that I ate contaminated meat.

Who would have thought that staying at a five star resort in Orlando would have triggered a cascade of health events that resulted in years of unnecessary suffering?

Left: Disney's Animal Kingdom Lodge | Middle: Hospital IV equipment, Memorial Health | Right: My IV antibiotic therapy

When your brain is sleep deprived and infected, you can't think straight.

If I had known a concierge health advocate who had the level of knowledge that I have now, I would have gladly paid to retain them so I had an expert to help me navigate my nightmare. I was unable to think straight and my spouse had no medical knowledge.

When I use the word complex illness, I am referring to symptoms affecting multiple organ systems in the body. You can see why a physician specializing in one area of the body wouldn't want to dig in beyond their specialty. They simply don't have time and know that health insurance companies are micromanaging the patient care they provide.

The Missing Piece:

Even after being diagnosed with Bartonella Henselae in New York City back in 2012, the functional medicine/tick borne disease specialist who I paid a fortune to see for three years had missed the details in my unique case.

Although he formally diagnosed me with Lyme disease by this in 2011, he seemed more focused on Lyme than the fact I was reacting to everything, He felt that my severe reactions and sensitivities would resolve once I was treated for Lyme disease.

Even though he also diagnosed me with cat scratch disease in 2012, there were significant shortcomings with his approach. I don't think he realized that it had been 31 years since the illness first manifested at age 18 because he wasn't asking the right questions and was overloaded with sick, complex patients.

He failed to identify two critical aspects of my health condition and lacked the necessary training to diagnose the underlying issue that caused my adverse reactions to various treatments. This oversight in diagnosis resulted in my inability to tolerate treatments and prolonged my illness by a decade. Additionally, he did not recognize the significant impact of Bartonella Henselae (cat scratch disease) with my complex health condition.

He was overloaded with patient cases and in hindsight, I was too ill to ask the right questions. This is why no one should be walking into their patient appointments without a private health advisor.

Reflecting back on when I became extremely ill in 2006, I suspect that I may have contracted Toxoplasmosis or another infection in 2006, which subsequently activated a previously dormant Bartonella Henselae in my system.

Is your head spinning yet? This wasn't a simple "one and done" diagnosis case. We have millions of people who are "complex" and many will be misdiagnosed.

Consider this. How many physicians can allocate 3-5 hours to thoroughly engage with you, asking detailed and specific questions to focus on areas that might have been previously overlooked?

This is precisely why I created the Strategic Health Assessment. It enables me to pinpoint areas that may have been missed by their practitioner and facilitates the creation of a personalized plan used to guide my clients to a physician(s) who can focus on the identified areas. This approach helps to eliminate the "medical merry-go-round," thereby reducing client stress and frustration.

Contact me today to schedule your one-hour paid phone consultation.

Because your health is your wealth- and reclaiming your life is always worth it!

To Your Health,

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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