My Family's Lyme Disease Story: Part I

 

 

 On September 10, 2011, I returned home from a shopping trip to sit down for a date-night movie with my husband, Frank. Just as the opening credits started to roll, Frank announced that he felt sick and needed to go to bed.

I was shocked. I thought he was joking at first. This is a man I had known for 19 years. He'd never been sick all of a sudden like that. Normally, if he didn't feel well he would just tough it out through a movie, but to suddenly feel so sick he can't even sit on the couch, never.

That night Frank vomited 8 times and had other horrible flu-like symptoms such as night sweats, congestion, headache, light sensitivity, and profound fatigue.

He started to have severe respiratory problems and we thought it might be pneumonia. I worried because his skin became pale and yellowish. He looked like he was starting to have liver failure.

I thought he might have Tularemia, also known as "Rabbit Fever," because we have a lot of rabbits in our yard and he had just mowed the lawn. Tularemia is passed through ticks and other insects after becoming infected by a mammal, often rabbits, or through inhaling the feces of infected animals. It involves fever, cough, and many symptoms he had. Little did I know how close I was.

When we went to the doctor 2 weeks later and Frank was diagnosed with severe bronchitis, it made sense. He had been having a lot of respiratory symptoms.

The primary care doctor gave Frank antibiotics and inhaled steroids. The lung x-rays came back "clear" but there was an unusual spot, an air pocket, in the lower lobe of one lung. Frank was told to come back in a month for a follow-up x-ray.

Instead of the antibiotics and steroids making Frank feel better, he got rapidly, dramatically worse. The symptoms were unbelievable- cough, congestion, fever, joint pain, difficulty standing and walking, anxiety and panic, low blood pressure, slow heart rate, vision problems, dry mouth and eyes, dizziness, extreme leg pain, weakness, difficulty sleeping, confusion, sore tongue, difficulty regulating body temperature, tingling and numbness in his arms, and difficulty breathing.

It was as if his entire body was shutting down. We thought that he might be having a reaction to the steroids. I didn't sleep for a whole weekend because I just sat up to make sure Frank would make it through the night. He told me to take out a life insurance policy on him and leave him in a medical facility somewhere.

When Frank returned to his primary care doctor on Sept 26th, he was already having cognitive problems. He was confused, had slowed thinking, and was getting lost in familiar places. His doctor immediately diagnosed him with Lyme Disease based on his symptoms and gave him a prescription for 100mg of Doxycycline twice a day for 2 weeks. The doctor said Frank should feel better within 10 days.

We felt relief at having a diagnosis without going through the problems of testing. Lyme Disease tests have a high rate of false negatives. I worried that the length of treatment would not be enough. I had worked for Sandy Connors whose daughter, Marlena, was featured in the Lyme Disease documentary, Under Our Skin. Sandy, a Lyme Disease advocate, had educated me on the difficulties of Lyme Disease diagnosis and treatment.

I began to research. As I scoured the internet, watched Under Our Skin, and read books, Frank got worse. In addition to all of his other symptoms, he started having profuse night sweats, interrupted sleep, stabbing bone pain in his shins, tingling and numbness in his extremities, migrating joint pain, pain in the soles of his feet, nerve pain on his legs, sensitivity to light, headaches, uncontrollable vomiting, and reduced appetite.

Then a rash started. First as just a red spot the size of a quarter on one leg and then spreading to multiple spots over both legs. As the spots grew, Frank's legs and feet began to swell. His legs from the knees down, including his feet, swelled to about twice their size.

The Erythema Migrans Nodosum rash as it was just starting

The rash wasn't a typical Lyme Disease rash (Erythema Migrans, or "EM" rash). It was much "angrier" looking and had tender lumps on it.

My research had me worried and wondering about several things. The first was the steroids Frank had taken causing something called a "Lyme Disease Steroid Disaster." This is an increase in the severity of symptoms due to steroids lowering immune function.

The next was the possibility of other tick-borne infections known as "co-infections." These included Babesia, Bartonella, and Erlichiosis.

And I worried about something called a "Herxheimer Response" or "Herx". This is a worsening of symptoms due to a flood of bacterial die-off toxins. I felt we needed an expert to help us sift through what was going on.

Finally, Frank returned to his primary care doctor on October 4th. His doctor called in their infectious disease specialist. They both concluded that there was "no way" Frank had Lyme Disease because he would have been better by now. They didn't think the rash looked like an EM rash either. The infectious disease specialist said he didn't recognize the rash and couldn't figure out what Frank could be sick with.

They refused to test for Lyme Disease or any co-infections, and instead tested for Legionella, the bacteria responsible for Legionnaire's Disease. They dismissed me when I suggested that other people in the family would be sick as well because we all shared the same environment.

When the blood test results came back, Frank was negative for Legionnaire's Disease but the rest of his results were nothing less than shocking. Two markers of inflammation, C Reactive Protein and Sedentation Rate, were sky high. His white blood cells, platelets, monocytes, and neutrophils were elevated, and his lymphocytes, red blood cells, and hemoglobin were low.

Frank's doctor ordered a test for Mycoplasma and sent him to a rheumatologist. The rheumatologist diagnosed the rash as Erythema Migrans Nodosum (we later found out that this rash is associated with Bartonella) and ordered tests for Sarcoidosis, Lupus, and Parvo Virus. He did not believe it could be Lyme Disease or any co-infections but ordered tests for Lyme Disease and Babesia. He wanted Frank to stop the antibiotics and start on oral steroids. Frank refused until the tests came back, knowing that steroids could make Lyme Disease worse, even fatal.

We waited for the test results to come back. I started looking for a "Lyme Literate Medical Doctor."


Stay tuned for Part 2: Diagnosis