Family’s battle with Lyme disease ends in deep tragedy
By Kaethe Mitchell
Our two daughters were ill for years and were misdiagnosed by countless specialists. Niki never had a tick bite that we saw nor a rash. Keara had a strange bite with a large solid oval rash around it when she was 2 years old; her pediatrician misdiagnosed it as a spider bite and she was never treated.
Each child began to become ill around the age of 11 or so. Niki tested negative on the conventional two-tier Lyme testing and became sicker over the next 2 1/2 years until finally testing positive with IGeneX Labs. About a year later, Keara would test positive with IGeneX as well. They both had Lyme, Bartonella, and babesiosis.
Niki tolerated most antibiotics, treatments, and supplements fairly well, while Keara struggled with each one she tried.
Niki had to drop out of her first year of college due to pain, brain fog and the brutal side effects of the treatments and, as she slowly began to regain part of her health over several years, she was able to gradually return to studying to become a veterinarian.
Keara’s worsening condition forced her to drop out of high school and to take home-bound teaching for a year and a half but she was able to return to school for her senior year to take just enough credits to graduate.
Keara began working in retail and wanted nothing more than to be like her peers. She was devastated that she was unable to go to college. She wanted to travel the world but was riddled with pain and disability.
In February 2017, she took her own life at the age of 19. Her sister Niki will never have her little sister by her side as her maid of honor when she marries one day. Her brother will never be able to sing and play guitar and piano with Keara again. We, her parents, will never see our daughter grow and thrive, all due to the misdiagnosis of her tick-borne diseases that affected every organ and every system of her body. We will never wrap our arms around Keara to hug and kiss her ever again.
Today I came across a small plastic bag of Keara’s trash. Finding and holding the empty, discarded false eyelashes package I found in the bag knocked the wind right out of me. The old makeup brush in there still has her precious DNA attached to the dirty bristles, doesn’t it? Perhaps there’s some scant remnant of her scent, her essence on the brush. Grief rises up unexpectedly every day, several times a day now.
The outdated and ineffective Lyme guidelines caused both our daughters such immense and unnecessary suffering and yet as parents the guilt that we could have, should have, and would have done more will always plague us.
Why didn’t we insist on more specialists, earlier recognition and more treatments? Why weren’t we able to protect our children? Why did we trust the doctors and tests? Why does the medical community and the CDC continue to throw up roadblocks to prevent early detection and adequate treatment? How many lives will continue to be devastated?
Kaethe Mitchell is a school nurse in Binghamton, New York. She is active with Southern Tier Lyme Support, Inc. This article originally appeared in the Poughkeepsie Journal.
Kaethe, please don’t feel guilty that you couldn’t help your daughters. Blame the narcissistic, money grubbing big pharma, CDC, patent holders, and healthcare providers who blame the patient when they can’t fix them with a magic pill.
More specialists would not have helped. I’ve been seeing all kinds of allopathic and naturopathic healthcare providers for 30 years with no resolution, or even complete diagnoses of my TBD’s.
I fully understand why your daughter couldn’t take any more.
Hang in there. You’re not alone.
reply to martha jane — Kaethe, Martha is so right. Big pharma only cares about making big dishonest bucks. It is they who caused all your pain. My heart goes out to you.
I had lipids done on my quarterly doctor’s visit for A fib, During the visit I informed my PC that I had body pains that were severe enough to impair my daily functions, reaching for anything at any distance was a nine on the pain scale. About three weeks after my office visit I contacted my PC and asked to be tested for Lyme disease and was told I was a good diognostician, I had Lyme disease. After a two week treatment with Dioxin I tested negative but the damage had been done in the three to four months I had it. I now have post Lyme pain to go with my A Fib plus IBS. I believe it’s time the medical proffesion began giving Lyme and its related problems the proper attention it deserves, it’s becoming a quiet epidemic and locating people in the medical field that have extensive knowledge of this problem has been a futile task.
A friend took his life because of this insidious disease and the way we are NOT being treated. He survived Viet Nam, but could not continue to put his family. through TBDs, emotionally or financially. Now another life lost to stupidity and greed! When will this end?
Kaethe, I too was shut up by pediatricians. Now my children are grown. The two I tried to get help with have serious health problems. Grown, they will not listen. It hurts so much to not be able to hlep now that it is too late. If we had only known earlier.
I am so sorry for your loss. Its devastating i n my kids have lyme i pray to God we get thru this ?
So sorry to hear about this sweet girl. I too have Lyme and probably had it for years before being diagnosed. I struggle every day with ADD like symptoms and chronic fatigue
So very sorry, prayers for you all. As a Lyme patient for 3 1/2 years, I can understand the despair.
So sorry for the loss of your daughter. I too suffer with chronic Lymes. My daily tasks are impossible to do. I am riddled in pain and chronic fatigue. I have considered taking my own life to end the suffering.
I can’t understand why more attention to this debilitating disease isn’t being addressed. It mimics so many other diseases. But like cancer..they don’t want to find a cure..because if they did, the offices of doctors and specialist would be empty and so would their bank accounts.
It is criminal for doctors to take an oath “not to harm” and then do so. They will have to answer to their maker one day for all who had to suffer and are at the mercy of their doctor.
So sorry for your loss. My teenager is in similar condition to Keara, struggling with Lyme, etc, I want you to know you are not alone.. I question myself as well. We are all doing the very best we can, and I’m sure you did that every step of the way. Hugs to you and your family.
Dear Kaethe Mitchell and the entire Mitchell Family,
My sincere, deepest condolences and prayers to
all of you. Some words I know are not all that
comforting. As I sat and read your heart-fealt
words, I was identifying with the incredible frustration and bewilderment of what has happened to you and your family, only I, as a
father of a daughter and a son have traveled a much similar path.
I have always been a very healthy, athletic individual. My educational background is science.
I’ve worked in sports medicine, exercise physiologist and education. As you, I’m sure, are
fully aware of the devastating fatigue, I desperately tried to educate myself on this seemingly baffling illness. After five years finally
getting to a “Lyme Literate” M.D. I was advised
IV antibiotics, which required a pic-line.
Throughout this process, as you described, the
basis for misdiagnosis; the negative two-tier blood serology test had been the standard? Also
as you found Igenex Labs. in Ca., which turned up a positive result for me. As I continued, with the help of family and friends appealing my health insurance co. decision for non payment
due to a negative Elisa and Western Blot(2-tier),
The overall stress of financial insecurity, being
un able to work, the inability to participate in my
children’s lives as I normally would and the depression each day. The one and only reason I
have to continue on is my children.
There is an enormous amount of evidence to
support the major insurance companies along
with the Infectious Disease Society of America
(IDSA) and the CDC were not only fully aware of
the flaws and negative test expectations due to
a lack of testing for all possible co-infections plus
additional strains resulting in weak positive bands
and conclusions. Mean while my insurance company never refused to pay for a “two-tier”
test (8-10x) because of Their financial interest
in certain testing labs, along with Gary Wormser of the IDSA. I believe the horrific tragedy your
family has suffered and still suffering , as well as,
this has destroyed my family plus countless other
families and individuals now in all 50 states in the
US plus throughout the world is directly linked to
Some very large Health Insurance Co., IDSA,
CDC and NIH. It’s time to stop the corruption
that killed so many and ignores costantly increasing number of seriously sick!
Charles Pulvino
NJ
I am so sad for you and your family. It is a waste of your Keara’s precious life, and could have been avoided. We are our own advocates, to a point. We should be able to trust medical staff to look after our best interests because often, we are ignorant of disease — we just don’t know until it is too late. Hindsight — don’t we all wish we had when it comes to Lyme disease. Godspeed.
How many times can we push back against the “all knowing” doctors before we get a label that puts our children at more risk? I have seen too many stories of parents who are called out as crazy, or as having Munchausen’s syndrome, or as making things up for attention to think just pushing harder is a great answer. I am confident from your story that you did the best you could for your family, making each choice based on the full reality you were living at the time. 20/20 hindsight is painful, but doesn’t always let you remember that at the time, you could only work with what was real, and in front of you. I am so sorry for the devastation you have faced. I lost a friend who loved green beans and seeing green beans makes me cry. She was not my child, I can only imaging the 1000 fold worse agony I would feel if I lost my son. He has also been misdiagnosed, in the face of CDC standards and full evidence of Lyme, including multiple bullseye rashes. I have seen many doctors and can not change their minds. What do CDC standards have to do with it? That rash is supposed to be diagnostic and it still wasn’t enough. Thank goodness for the understanding of the Lyme community. Be blessed, with a measure of comfort to help you and your family keep living.