(Notice that she was bitten by a long star tick, not a deer tick.)
Little tick can cause big problems
Posted: Wednesday, October 17, 2012 9:15 pm
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Staff Reporter
Colette Greer doesn’t want pity.
Instead, she wants aware-ness and better under-standing and changes in the treatment of an infectious disease that is essentially robbing her of life.
Mrs. Greer, 49, suffers from Lyme Disease — which she said was brought on by a tick bite she sustained over three years ago.
Her ordeal actually began in spring 2009 at the house she and her husband, Eddie, have at Kentucky Lake. The ticks are bad in the spring and blow out of trees, and Mrs. Greer recalled she was bitten.
She found the tick on her body while she was showering and, having been raised in the country, she simply pulled the bug off. She thought it was no big deal.
As it turns out, it was only the beginning of her battle.
“It kept getting worse and red,” she told The Messenger recently during an interview at her farm between Union City and South Fulton.
Mrs. Greer became ill, but she was looking forward to a trip out west with her youngest son and was determined not to let illness interfere.
“I got really sick, like I had the flu, and my hands were literally twisting,” she said. “It wasn’t just joint pain. They were twisting. And my feet were like somebody was squeezing them sideways and I couldn’t get myself out of bed.”
Her doctor called in an antibiotic, but she was no better after a week. She literally dragged herself out of bed and went back to the doctor, where she was treated for flu.
Mrs. Greer had also begun experiencing short-term memory loss and suspected there was something far more wrong. She initially forgot to tell her doctor about her bite from the lone star tick — not a deer tick, commonly known to carry Lyme Disease — but she told him about it when she was no better and went back three days later.
“He said, ‘That doesn’t look good,’” she recalled.
Mrs. Greer said she was told the test typically used to detect Lyme Disease frequently comes up negative due to no antibodies being detected in an infected patient during certain stages. She was prescribed 30 days of doxycycline, used to treat bacterial infections, and she thought that would be the end.
She took the trip to Wyoming with her son, but she was extremely tired and often found herself disoriented in locations that are normally familiar territory. On the trip home, she made it as far as St. Louis before her hands started twisting and she found herself in tears. Her son drove the remainder home and she ended up in bed for two weeks.
She recalled her doctor then thought she was suffering from fibromyalgia, a chronic condition characterized by widespread pain, probably spurred by the tick bite, and she was treated for that condition until the spring of 2012.
In the midst of everything, Mrs. Greer’s oldest son died Dec. 27, 2010, at the age of 29.
“The good Lord blessed me, holding this stuff off for like a year for me to get past the first year without him. That was hard,” she said.
The Greers bought their peaceful country farm on Totten Road, just off the Ken-Tenn Highway, and had just started working on getting settled in November 2011 when Mrs. Greer “literally collapsed” from her illness.
“I couldn’t go anymore,” she said.
Not long after, Mrs. Greer came to realize she had been misdiagnosed and apparently was suffering from Lyme Disease.
“I’m not the only one that’s been misdiagnosed,” she claimed. “People are misdiagnosed. People don’t know they get bitten (by ticks).”
She said some ticks are very tiny, just a speck, and people may not even realize they’ve been bitten.
“Not everyone gets a bulls-eye (at the bite). There are different symptoms,” she said, explaining her tick bite was red with a hole in the center.
Mrs. Greer said she was insistent and kept telling her fibromyalgia doctor that her hands were twisting like a symptom of Lyme Disease when an episode occurred. She finally found a Lyme specialist in Franklin and made an appointment.
She said she didn’t know anything about Lyme or know anyone with it, but, “I think it was God telling me that, because it got so bad.”
She recalled one episode where she was very lethargic but was trying to hide it from her husband, who came home from church to find her having chest pains and difficulty breathing.
“I was just praying for God to go ahead and take me,” she said.
Mrs. Greer, whose appointment with the Lyme specialist was still a month away, was taken to a hospital emergency room, where her husband received some startling news.
“They hooked me up and said, ‘Mr. Greer, I’m sorry to tell you this, but your wife’s in the last stages of Lyme. It’s starting to affect her organs,’” she recalled. “And I just sat up and started pulling the stuff off of me, saying, ‘What are you talking about?’ Nobody told us that there was stages to this stuff.”
Greer told the doctors his wife had an appointment with a specialist. Mrs. Greer said she was told to go home and work up her strength because the treatment she would receive would be similar to chemotherapy.
“I asked the doctor why, if he knew about the treatment, that he couldn’t just start me then. Why wait a month? He said because he didn’t know enough about it and he knew very little about Lyme,” she claimed. “Apparently there is very limited training about Lyme, almost none.”
Getting treatment
Due to the seriousness of Mrs. Greer’s condition, she was able to see the Lyme specialist sooner than scheduled and was there within a couple of days of her emergency room visit. The specialist drew blood and it was sent to a lab that tests for every bacteria carried by ticks, which includes eight different bacterias, among them Rocky Mountain Spotted Fever.
She said the doctor started her immediately on oral antibiotics, even before the results were back, and affirmed she had been doing the right thing by taking herbs recommended by her adopted Native American mother, which some had questioned.
Mrs. Greer’s illness was not responding to the oral antibiotics, though, and the doctor took a more aggressive approach by ordering a port for intravenous antibiotics. She was told she could turn it in on insurance, but was cautioned the doctor had seen it denied by insurance because it’s Lyme Disease.
“They consider it re-search and experimental,” she claimed.
The Greers found themselves out a great deal of money out of pocket — a whopping $8,000 for 90 days’ worth of the port treatment.
Mrs. Greer’s husband received a crash course in how to care for the PICC (peripherally inserted central catheter) line her port required and he said in order for insurance to pay, he had to sign a waiver agreeing to give her the medicine three times a day at home.
She said she had to take a few days’ break from the harsh treatment about every three weeks because she would start feeling lethargic and have a Herxheimer reaction “where it gets worse before it gets better.”
A week short of three months of the costly treatment, Mrs. Greer stopped in mid-September because the doctor said her body couldn’t handle any more intravenous antibiotics and she needed to return to oral antibiotics — but Mrs. Greer decided to stop antibiotics entirely because she didn’t want to be bedridden any longer.
“I understand why cancer patients stop chemo treatment,” she said, adding, “But God’s got me, and I’m going to be OK.”
Her port was removed on a day she was very sick.
“I couldn’t function,” she said. “I had a week’s worth of medicine left. I told Eddie I couldn’t let that ruin, $800 worth. I tried to finish taking it and I got so bad, but I didn’t want to waste it.”
Amid frequent haggling with a medical supply company and their insurance company, the Greers later found out the high cost apparently was for maintenance of the port, which was approved by insurance even though the antibiotic was denied. Mrs. Greer said she has been told other Lyme patients encounter similar red tape.
“It’s not like I asked for this ... I’ve got stuff I need to be doing,” she said.
Now, based on a suggestion from the specialist and the Greers’ own research, Mrs. Greer is using a Rife machine — which her husband described as an electronic device which uses ultra-high frequency sound waves to kill viruses and bacterias in the body.
The Greers ordered their Rife machine online for $3,000 out of pocket.
After using the device for a week and stopping all antibiotics, Mrs. Greer said she could tell a difference.
“I can tell I have more energy,” she said while sitting outdoors at her home. “I’m still having fevers and still dizzy, but not as bad, and my chest still hurts. But two weeks ago, I was so weak I couldn’t sit out here and talk.”
Greer is optimistic the Rife machine will help his wife make a full recovery, even though he said some people try to discredit its effectiveness. He said people at the lab where it came from have indicated that due to her condition, she will have to use the machine 18 to 24 months in order to get rid of the disease.
“We’re shooting for getting rid of it, absolutely,” he said.
Speaking out
An obviously frustrated and weary Mrs. Greer is speaking out about her ordeal in order to see changes made in the way Lyme Disease patients are diagnosed and treated and the way insurance handles what is needed for treatment.
Mrs. Greer choked back tears as she wondered, “What if it was some parent and they got told that their kid has this stuff and they’ve got to have $8,000 to save that kid’s life or watch them be pretty much debilitated with this stuff?”
“I keep thinking, ‘What if it was my child?’ I lost a child,” she said. “What if it was my kid and I didn’t have $8,000?”
Mrs. Greer expressed concerns about the method of testing for Lyme Disease and its reliability, while her husband voiced doubts about the effectiveness of antibiotics used for prolonged treatment. She said she would also like to see better education about the disease for physicians.
She has contacted numerous state and national elected officials in her quest for help — “anyone with a bigger voice to listen” — and has been in contact with the state health department. She claimed federal law requires anyone being treated for Lyme Disease be reported to the health department and she alleged her case was not, and she also expressed concern about other cases “slipping through the cracks” in a year when ticks are plentiful.
One state health official was adamant she did not likely contract Lyme Disease from a lone star tick since it is commonly carried by deer ticks, but Mrs. Greer is insistent and said she knows the difference in the two ticks’ appearances.
She said her state health department contact also questioned her taking the harsh antibiotic treatment at home because it is so similar to chemotherapy.
“I was like, ‘Yes sir, but what choice do I have?’ I want to live,” she said. “I’ve got a kid who wants his mama and a husband who wants his wife.”
Mrs. Greer was told about CDC regulations of being given 30 days of the oral antibiotic doxycycline and being re-tested for Lyme Disease after 30 days, which she said did not happen in her case. She also addressed concerns about the reliability of the testing during her conversations with the state health official.
In her mission to educate others, Mrs. Greer wants people to be more aware of Lyme Disease and what can happen. She said nearly everyone has been bitten by a tick at some time in their life, but people don’t understand the serious consequences that can occur if Lyme or other sickness develops.
Having faith
Mrs. Greer brushed back tears as she told about one of the lowest points during her illness, a time when she felt isolated from friends and was so lethargic and confused she couldn’t even read her Bible.
But she could still pray, and she held on to a faith that God knew what was in her heart.
“I know for a fact that God has carried me through all this and I know that it’s for a reason,” she said.
She said she knows there are people who are in far worse condition — including Lyme patients who have seizures and memory loss — and people who have spent much more on treatment.
“There are people who are worse than me. There are people who have spent hundreds of thousands of dollars on antibiotic and treatment out of pocket,” she said. “Some are much worse. I am blessed.”
If not for her strong faith, she might have given up a long time ago.
“People will let you down, but God won’t. If it hadn’t been for God, I couldn’t imagine going through all this,” she said.
Mrs. Greer is determined to return to a normal life and be able to ride her beloved horses, housed in a stable at the Greer farm and ridden by others during her illness. She said people take so much for granted and complain about the most trivial things.
“I want my life back,” she said. “I still have boxes to unpack. I want to make my nest in there. I want to ride my horses. I miss them so bad. ... I just want my simple, but great, life back.”
Mrs. Greer firmly believes God has allowed things to happen in her life for a purpose.
“I don’t want any pity,” she said. “I don’t want people saying, ‘Poor, poor Colette, you know she lost her son.’ My son’s good. He’s sitting up there beside the throne of God and he’s fine and I’m going to see him again. My boy’s just fine. If I’m the one who’s supposed to be an example, then that’s what I’m supposed to do and I’m not going to keep my mouth shut.”
For now, Mrs. Greer is simply taking it one day at a time.
And she’s comforted by a bit of wisdom shared by an unknown older black preacher who once took time to pray with her in a hospital emergency room.
“He prayed with me and he said ‘fear not,’” she said. “‘Fear not’ is in the Bible 365 times — one for each day of the year.”
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Staff Reporter Chris Menees may be contacted by email at cmenees@ucmessenger.com.
Published in The Messenger 10.17.12
