Hey Robin!*)! Hey Eyewuvu!!
Re Lyme being seronegative- here is an extreme case of bad neuro Lyme- Glenn Edward Killion. I knew his Mom, she was my friend, a great Lyme activist.
This is a true story. Glenns Mom & I wrote it up together:
Lyme Disease: A 'Clinical' Diagnosis Can Mean Life or Death
by Sarah Olson
with the assistance of
Beverly Killion Nave
Glenn Edward Killion was a loving husband, loving father and life-long
Californian. He spent his favorite times with his family in the California wilderness, fishing with his son Matt, hiking, backpacking and hunting with his family. It was on such a family hunting trip in 1994 that Glenn Edward Killion received a tick bite and had a
subsequent rash at the bite site- and went on with his life. He, his
mother and father had noticed the rash and had even joked about looking
like a target, not realizing its significance.
It was some time after this that he began to feel unwell, but he made no connection between the tick bite, the rash- and his illness.
Doctor visit after doctor visit was made, year after year, until he was in chronic pain and suffering from multi-system problems.
He lived in Chico, California, a hotspot for Lyme disease in California. He lived with his wife Kendra, his children Matt and Heather, and was on loving terms with his mother, father and brothers.
With such a loving family, solid employment and so many things he loved to do- from karate to sports, from cooking to hiking to simply being
with his children, life should have continued for him in an amiable
Instead, he was sick. Doctor after doctor was unable to find anything organic to point to in his illness. There were suggestions he seek psychiatric help. He was depressed; it was true. He admitted that- but pointed to the physical problems he insisted he was having in his life.
At one point he was suicidal and committed himself because he did
not want to die. He loved his children more than all the world; he wanted to watch them grow up.
Somewhere in the years and years of pain and doctors, Glenn Edward
Killion had remembered that tick bite, had remembered that rash and
realized what he had. The doctors he told this to tested him for Lyme
disease- but he tested negative - and when he tested negative they
repeatedly shrugged him off as a psychiatric case, which, to someone
suffering severely, was devastating.
Tests for Lyme disease are not accurate enough to be recommended as screening protocol, meaning Lyme disease should never be ruled out
because of negative blood tests. According to the CDC and to the FDA
Advisory on Lyme tests, a Lyme disease diagnosis is supposed to be
clinical, meaning based on symptoms rather than test results. In
actuality, finding a doctor who will treat seronegative Lyme is rare.
There are only a few doctors in all of California who will treat on
such a basis. Mainstream doctors are not aware of the problems with
Lyme disease testing- and Glenn Edward Killion paid the price for this
Finally, when he was chronically ill and debilitated almost to the point of being bedridden, he found a doctor who took him seriously.
This doctor diagnosed him with chronic Lyme disease despite negative
tests and a negative spinal tap.
There are many reasons for false negative Lyme tests, from patients
who lack the average antibody response and who are seronegative, to
different strains of Lyme which are not read by the standardized tests
to the very real inadequacies of the tests to begin with. Simply put,
there is controversy over the numbers of people who have Lyme disease-
because negative tests do not mean you are not infected. Even spinal
taps are not definitive, because only 20% of people with chronic Lyme
will have positive spinals. In CSF, the Lyme spirochetes tend to
convert to cystic form, which tests negative. Again, mainstream
doctors are generally ignorant.
By this time, Glenn was very ill. He had lost his job- and he had always had a good work ethic. He was no longer able to care for himself. He would get lost if he left the house sometimes. He
hallucinated. He was in pain. The last two months of his life were
spent in agony. His children hurt to watch him. His mother did all
she could. His entire family stepped in to care for him and the family
as much as they could. An IV line was put into his arm and expensive
IV antibiotics were begun.
At last, he had a diagnosis and appropriate treatment.
It came too late.
On the morning of March 28, 1998, Glenn's father went to wake him up
and found him dead in his bed. He was 36 years old. His son Matt was
6, his daughter Heather only 4.
There is no description for the devastation his family endured.
The question that remained was: did Glenn Edward Killion have Lyme
disease? Glenn believed he did, despite negative test after negative
test. His family believed he did. His doctor had diagnosed him with
it. Yet, there are many doctors who scoff at seronegative Lyme
disease, who question its existence, who questioned his diagnosis even
down to the day of his death and who had the potential to cast serious
allegations at the doctor who diagnosed and treated him.
For a final answer to this world, Glenn's widow gave permission for
slides to be taken, small slices of his heart and his brain. The
slides were sent to noted pathologist Dr. Paul Duray at the National
Institute of Health.
Lyme spirochetes were found in his heart and brain.
The story of Glenn Edward Killion is not that of the lone
Californian who has died of Lyme disease. We have lost many
Californians to this illness.
In 1999, two Californians died of Lyme disease, Frieda Gaultney, a
loving wife to her husband Jim for almost 55 years and John Every, a
Vietnam Veteran and a resident of Hemet. Since the disease is notably
under-diagnosed, some epidemiologists estimate by a factor of 10, two
known California Lyme disease deaths in one year, 1999, is a sentinel
event. A woman from Big Bear died in January 2000 after many years of
illness. Dr. William Nichols suffered from Lyme disease for twelve
years, was losing his vision and his ability to walk before taking his
own life on April 12, 2000. A woman in Northern California died just
last week. The litany of the lost includes the pioneer videographer
Julian J. Backus, a TV producer, an actress, an 8 day old baby boy and
untold more. But Glenn Edward Killions story is different.
Glenn Edward Killions story is different because his death was, in
hindsight, so preventable. If anyone should have been caught in time,
it was Glenn. He fit the high-risk profile for Lyme disease. He had a
known tick-bite history- which only 20% of people with Lyme disease
have, he had a subsequent rash, which again only a fraction of people
have. Not only that, but his subsequent rash was not a plain red
splotch, as many Lyme rashes are, but a bulls-eye rash, which is by
itself diagnostic of Lyme disease. He had, in hindsight, classic
presentation of Lyme disease- but negative tests. When he was bitten
and had the rash, antibiotics could have made him well without a doubt.
When he began to get sick after the bite and rash, antibiotics could
have made him better and perhaps even well. But by the time he
received help, he was living the hell of late tertiary-stage Lyme
disease. He sought for so many years help which was denied him for
what he knew he had- Lyme disease. He had a tick bite, he had the rash
and he knew what he was experiencing was real. He should not have had
to die to prove it because of the ignorance of mainstream doctors about
a clinical Lyme diagnosis.
His story is also different because he believed in himself enough to
k now what he ahd despite doctor after doctor telling him he
didn’t. His story is different because he didn’t accept a
psychiatric diagnosis like most people would have- and because his
family sought the proof for the world when it was too late for him.
With greater education about Lyme disease in California and more
awareness about the limitations of Lyme disease testing, more people
will live who otherwise will suffer and perhaps, like Glenn Edward
Killion, even die. Negative tests should never rule out Lyme disease-
not even a negative spinal tap. Period.