My Life with Multiple Chronic Illnesses, Including Lyme Disease

Thursday, February 24, 2011

A Lyme Obituary - and a Message to the Living

I received this obituary in email and felt I had to share it with you. No, I didn't know the gentleman in question. Unfortunately, this is what can happen if you have Lyme disease and you're forced to rely on conventional medicine and doctors who follow the IDSA guidelines for treating Lyme:

Vernon Dale Kyle, 55, Kansas

Vernon Dale Kyle liked a good story. Mostly about catfishing on a long-forgotten Kansas lake. He was born Sept 24, 1955 in Garnett, Kansas. He had one best friend in those early days, and it was Don. They roamed the Kansas prairie like the buffalo, wild and free! He was raised by Chester and Edna Kyle with one brother and one sister, Jim and Aletha. 

Vernon went into the US Army 82nd Airborne division and it wasn’t long before he took his turn in Vietnam in 1974, then on to Germany. He re-enlisted into the US Army Veterinary Corps stationed at Ft. Ord, then to an outpost in San Diego, California. He met Peggy Miller and they married at Cabrillo National Monument at the Lighthouse overlooking the ocean. 

After discharge, he moved to Tulsa, OK where his two awesome kids were born, Jamie Lynn in 1985 and Jesse Dale in 1988. Vernon went to college and became a journeyman welder and stationary engineer. He specialized in boilers and high pressure systems, and stainless steel welding. He loved coin collecting, nature, and decorative engraving. He returned to Garnett, Kansas in the early 1990’s to support his mother when his father was ill. 

He was employed at the Anderson County School District in the maintainence department until suddenly he became too ill to work in October 2007. He was life-flighted twice to the KC hospitals and in ICU and on a rehabilitation unit for five months.

Vernon’s illness was bacterial in origin, his family was told by the doctors in Kansas City. When he received IV antibiotics, he thrived. When the doctors took away the antibiotics, he began to fail. The doctors would never identify the name of the bacteria that was trying to take Vernon’s life. 

He had symptoms like abcesses in his abdomen and near his lung and kidney, foot pain, rashes similar to a bartonella rash, and little red dots on his body, memory loss, dizziness, joint pain, loss of feeling in his hands, feet, loss of use of fine motor skills, difficulty processing any information, body jerks (myoclonus and severe muscle cramps) and seizures. 

As time went on he experienced intense bone pain from a collapsing spinal cord, and lost about 6 inches in height. One doctor his family consulted said that Lyme disease and bartonella can cause the bone to not have blood supply and oxygen due to excessive fibrin production in the blood. As time progressed, Vernon needed oxygen, had an intermittent low heart rate of 40, would pass out. He became a diabetic and experienced hepatitis and kidney failure. 

By the way, his cat died of tick-borne illness.

He could never understand the “controversy" over Lyme disease.  Even though other family members were eventually diagnosed with Lyme disease, he was never tested by his doctors, simply because they refused. 

Additionally, after numerous hospitalizations, he was denied long term antibiotics by infectious disease doctors in the hospital and his physicians in the community, and was denied testing when his family directly asked for Lyme testing using specialty laboratories. More than three years of advocacy efforts failed on his behalf.

During one hospitalization, his family asked the infectious disease doctor, “Can you help him? His family has Lyme disease, will you test him?” That Infectious Disease doctor said, “No,” firmly, immediately turned his back and walked out of the room. The doctor discharged Vernon the next morning. 

But Vernon had to laugh when this same, bright, Infectious Disease doctor actually said, “There are no ticks in Kansas.”

Several times Vernon was too sick to leave the hospital and care for himself.  Even in his weakened condition, once the hospital sent him home in a taxi without any home nursing!  His insurance wouldn’t pay any more for his care. Not even Adult Protective Services would intervene, even after many calls.

Vernon learned NOT to mention Lyme disease to anyone. No one was willing to test and treat him for Lyme disease and bartonella. Not the Veteran’s Administration hospital, not the big medical centers in Kansas City, nor his local doctor. But they were all perfectly willing to let him suffer and die from tick-borne illnesses. Ultimately, he lost the war.

Vernon was left by his doctors to debilitate, and after losing balance, he had repeated traumatic brain injuries from falling. He later was able to get assistance through the TBI waiver program, but after many calls for a higher level of care, even this system failed him. 

His family later discovered that he had gone a month without a bath, and often didn’t have food or water, and went to the hospital on his birthday after he collapsed from carbon monoxide poisoning from his furnace. Thankfully, he was with family that day and he was admitted for another time in the ICU. 

Yet those medical professionals who were suppose to care for him, didn’t. Every time his family would try to get help for him, those in charge would fight his family. They even refused to help him to apply for full Veteran’s benefits as a Vietnam veteran, and he often suffered from not having enough money to live. He took it well. He kept his doctors laughing even when he knew they were going to let him die. 

He lived with the courage of a warrior, and endured and persevered through unrelenting pain to the end, which came on Sunday, October 3, 2010. He left a good example of courage under fire, and joy in the midst of sorrow. At his memorial service, his son-in-law recited “Invictus,” 

The more his body was crushed by Lyme disease and bartonella, the sweeter and more loving he became. He had given his heart to his Savior, Jesus Christ, rather late in life, and it was evident that his life had changed.

He is already greatly missed by the love of his life, Peggy, and his children, siblings, and neighbors and friends. Now he is truly free, and we are sure he is fishing in heaven and that he caught the biggest fish this time! 

Now, please understand, I'm not sharing the story of Mr. Kyle to be morbid; I'm sharing it because I feel that it's important for the Lyme community to have ALL the facts.  There is some very important information in this obituary.  For example:

1. You can DIE from Lyme disease.  Yes, it is possible.

2. If you have Lyme, you should be tested immediately for hypercoagulation syndrome; it's a very common condition for Lymies and that's why poor Vernon lost 6 inches in height when his spine crumbled.  It can also lead to a stroke and prevent your medications from being effective.

3. There are parts of this country (USA) which have few or even NO Lyme-Literate doctors (aka LLMDs).  And most of the "regular" doctors will not treat Lyme.  Some of them live in denial of the very existence of Lyme disease, at least in their part of the country.
If you live in one of those places, you should probably move.  Seriously.  Otherwise be prepared to fly to New York or Seattle or San Francisco every six months or so to see someone who is willing to give you long-term antibiotics (in defiance of the IDSA edict that no one should receive more than 4 weeks of antibiotics for Lyme even if they are DYING).

Because that's the reason Vernon Kyle was not diagnosed with Lyme, why he never got proper treatment.  His doctors had already treated him with antibiotics ... the obituary doesn't say for how long, but I assume it was at least 10 days, maybe longer.  

All of those short-sighted, IDSA-believing doctors Vernon trusted merely said to themselves, "He's already been treated for Lyme, this must be something else!".  They really do believe that a short course of antibiotics takes care of 100% of Lyme cases ... always ... end of story.

R.I.P., Vernon ... and catch a lot of fish!