Topic: Hey Wisconsin-ites!!! The Parrish Family Story...
CaliforniaLyme
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ONE FAMILIES LIFE FOREVER ALTERED BY LYME DISEASE
By Anne L. Boles, Palm Beach Post Staff Writer
A Woman and her children contracted the disease on a hiking trip to Wisconsin.
The Palm Beach native plucks vials of antibiotics from an overflowing bin on the kitchen table. By lamplight, she screws on needles and mixes chemicals, taps syringes and squeezes plungers.
Asleep on the couch is 11-year-old Chase, a tube snaking from his chest to a plastic bag strung above him from a metal stand. The bag is empty.
Like his mother, he is blonde and fine-boned. When he awakes, he will be in pain.
Chase has Lyme Disease too, and so does big brother Blake, who comes bounding downstairs with a 14-year-old's energy, all gangly arms and legs and shy grins. And so does Skye, who at 7 is too young and too optimistic to believe that her arthritic limbs will never learn to dance.
Like most victims in Florida, the Parrishes caught Lyme Disease elsewhere -- Wisconsin, in this case -- while outdoors. Because doctors here didn't know to expect it, the disease spread undiagnosed for more than three years.
Only Susan's husband, Wayne Parrish, is spared the chronic aches and sudden seizures that have robbed his family of a normal life and mystified doctors. Countless hours in univesity libraries and a mother's determination would track down the corkscrew-shaped bacteria that had wormed its way into sinew, bone and nerve; strong medicine and stronger faith would begin its exorcism.
But it may be too late. Chase has had four strokes already. Susan has heart trouble and now has a tangle of blood vessels in her brain.
A new treatment raises hopes for a cure, or at least a respite. Texas A&M University is experimenting with a hyperbaric oxygen chamber, which floods patients with pure oxygen to kill the anaerobic germs en masse.
Texas is far away, and getting there is expensive. The treatment is experimental. It may have painful side effects. It may not work.
Yet it is, quite literally, their last hope.
The Parrishs' light, airy house, with its wood beams and yawning cathedral ceiling, is set amid a network of lakes and trees in a rustic town just north of Tampa.
Susan Hoadley Parrish, 38, grew up in Palm Beach and graduated from Cardinal Newman High School. After college, she married David Wayne Parrish, 39, who works for an insurance company in Tampa.
Their family loves the outdoors, still does, although they can never behold it with the same innocent fascination.
Susan Parrish can remember the last day of normal life clearly, sometime in May 1992. The family was living in Wisconsin then and the big woods beckoned.
She and her three children set off for one of their customary walks, this time abandoning the usual trail to make their own way. Wayne did not accompany them.
She remembers the hip-tall grass and picking asparagus from a field. She remembers everyone wearing shorts and marveling at the forest's emptiness. It did not occur to her that others stayed away for a reason.
That night while showering, oldest son Blake, then 9, pulled a tick from his ear. Otherwise, no one noticed anything unusual.
When Mom and the kids came down with the flu that summer, that was odd. But when Chase, then 6, suffered a stroke, something was clearly, awfully wrong.
"He fell down ... and said, 'My left side won't work, Mommy,' said Susan. "I said, 'What do you mean? Get up.' "
Chase would go in and out of hospitals after that, suffering four strokes in all. He had to relearn how to talk and walk and lost much of the use of his right arm.
With his immune system weakened, Chase could not produce the tell-tale antibodies that show up in tests for Lyme Disease. When the test was done, the results came back negative.
The Parrishes had transferred back to Florida by then, and had begun what would be a frustrating, four-year journey through hospital wards and doctors' offices.
"Meanwhile, the rest of us had weird symptoms," Susan continues. "I had chest pains. Blake had joint pains. Skye was little, around 2. She would walk and just fall right down where she was."
Susan made a list of all their symptoms and went hunting through medical journals and textbooks. Could there be one disease that would do all this?
There was. Borrelia burgdorferi is spiral-shaped like the syphilis germ and twists into cells where it hides.
It surfaced in the 1970s in Lyme, Conn., and was traced to the tiny deer tick. Other ticks can carry it as well. Lyme Disease has spread through 43 states quickly and is now second only to AIDS in its growth rate, recent research shows.
The U.S. Centers for Disease Control and Prevention recorded 11,603 new cases of Lyme Disease in 43 states in 1995, according to the most recent statistics. It is still found most often in lower New England and the Middle Atlantic.
Florida recorded 16 confirmed cases in 1995, the last year for which statistics are available. Most caught the disease elsewhere, said state officials, although several people had not traveled out of state, and therefore must have caught it from ticks here.
While the number seems low, diagnosing Lyme Disease is tricky, according to the CDC and other researchers. It is often misdiagnosed because its symptoms can mimic those of the flu, arthritis or even multiple sclerosis.
Nearly half its victims get a bull's-eye rash and then may suffer seemingly unrelated ailments: inflammations, joint and muscle pain, palsies, fatigue, blindness, headaches, hallucinations, depression and seizures, to name a few.
In 1995, Susan finally wore doctors down with her insistence that everyone be tested for Lyme Disease. She was right, but getting the illness successfully diagnosed did not necessarily bring relief.
The Lyme Disease germ reproduces slowly, according to research reports, and can be cured easily if caught early. But the illness had several years head start.
Progress has been slow. Despite the antibiotics dripped into them, Chase and Skye remain too sick to attend school, and complete their lessons at home.
"The germ is sensitive to higher levels of oxygen," said Dr. William Fife, a professor at Texas A&M University's health science center. "It gets into the cell, where there's not enough oxygen to harm the germ. It lives there very nicely, and it makes it hard for antibiotics to get to the germ."
Fife is experimenting with a hyperbaric oxygen chamber, the same divice used to cure deep-sea divers of the bends. Patients sit in a compression chamber and wear oxygen masks for about an hour. The germs are flushed out and destroyed, Fife said. Of 23 patients so far, all but one have reported feeling better.
Some have stayed free of symptoms for five or six months so far. Others had symptoms resurface after a few months. Part of his research is determining how many sessions are needed, and for how long, said Fife.
Because it is experimental, the treatment is free. But how to get there? Who would pay for plane tickets, hotels, meals and a million other things?
Two years ago, Susan visited Larry Mills' Bible study class to make a plea for help. "There were 40 or 50 people, and she had us all in tears," said Mills, now a close family friend. "We just formed a circle around her, five and six deep, and everybody just prayed."
The Parrishes have turned to their congregation, the Idlewild Baptist Church at 1515 West Bearss Avenue in Tampa, for strength and help. Church members have done chores that Susan is too weak to perform and raised money toward the nearly $400,000 in medical bills.
The church set up the Parrish Family Fund, still in existence, and a local newspaper ran a story before Christmas to describe their desperate need for the Texas trip.
"I miss them terribly," Wayne Parrish said over the telephone. "This is harder than I ever anticipated. I missed Valentine's Day. Monday was her (Susan's) birthday. It all adds up."
Wayne spoke from his home in Lutz. His family was in College Station, Texas. From a motel room, Susan Parrish sounded upbeat. They were midway through their treatments.
Susan's father, Thomas Hoadley, had sold his West Palm Beach law practice to care for them and accompanied them to Texas. At first, things didn't go too well. Blake suffered chest pains in a restaurant, Susan said, and put his head on the table and cried.
Then Susan felt pain shooting through her chest.
"I cried all the way home," she said. "I screamed in the hotel room. My father didn't know what to do."
Chase and Skye also had trouble at first.
"Then all of a sudden, they got up and were stomping around with the oxygen masks on their heads, making animal noises," said Susan. "Chase and Skye are completely exuberant compared to what they were."
"Dr. Fife (joked) he was going to reinforce the walls after the Parrish kids had been in there. They're more like normal kids."
Staff researcher Xiao Kai Chen contributed to this report.
1997 THE PALM BEACH POST
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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Susan Parrish died of cancer pretty recently if I remember right... ******************************** Family not alone in facing crisis with Lyme disease Oct 7, 1998 By Kristi Hodge Baptist Press
TAMPA, Fla. (BP)--A walk in the countryside sounded inviting to Susan Parrish and her three children, suffering from a touch of cabin fever after a long winter in 1992. They relished the feel of tall grass against their legs as they searched for asparagus that grew wild in the hills of Waukesha, Wis.
But within a week, the Parrishes were experiencing flu symptoms -- except Susan's husband, Wayne, who had not gone on the walk. Susan, along with Blake, age 9, Chase, 6, and Skye, 2, continued to experience sore joints, fever and stiff necks throughout the summer. By fall, they knew they were experiencing something more serious than the flu. Chase suffered a stroke in September, followed by two more strokes in the next two months.
Unable to find answers, doctors suggested the family relocate to a warmer climate. They moved to Tampa, Fla., and soon joined Idlewild Baptist Church there. Chase's strokes stopped but he and the others continued to have unexplained health difficulties. The family has sought emergency room treatment at least 39 times, once for three of them at the same time.
When Susan noticed a rash on her calf, she asked to be tested for Lyme disease, a bacteria carried by some deer ticks. Doctors instead suggested she might have multiple sclerosis, for which she tested negative. They never tested her for Lyme disease.
Three years later, Chase had another stroke.
Susan, who by then had done extensive research on Lyme disease, insisted Chase be tested for the debilitating illness, which weakens neurological and cardiovascular systems. He -- and subsequently the others -- tested positive for the disease.
Lyme disease, if caught early, can be treated with oral antibiotics, but after three years of misdiagnosis the disease had progressed to the point that intravenous medication was required several times a week.
The cost of that and other treatments accumulated quickly. In response, Idlewild established the Parrish Family Fund to help the family pay about $1 million in medical bills -- including $1,000 per month just for basic doctor visits and medication.
Hearing about the church's efforts, George Steinbrenner, owner of the New York Yankees, paid $7,000 in travel expenses so Susan and the children could receive an experimental treatment for Lyme disease that meant being confined in an oxygen chamber for a month.
Reno Zunz, Idlewild's minister through family care and missions, said Wayne and Susan's Sunday school class has been at the forefront of making sure the family doesn't have to go through their illness alone.
The class brought meals, provided child care and did housework for the family when Susan felt too weak from intravenous antibiotics to teach Chase and Skye in home school. They also helped when a weakened bone in Susan's back fractured when she picked up a bag of groceries, and when she was bedridden because of a bleeding aneurysm in her brain.
Susan said the family has felt incredible strength from the church's support and prayers.
"The purpose of the church is to help people in need," she said. "Idlewild has certainly done that better than I've ever seen. They've been so concerned for us that I've felt almost like we've all been going through it together.
"You think there's no way you could make it through the desperate times, but you do. You cling to God, and you cling to those prayers. We relied on prayer at every turn, and God answered by sending us someone for every need."
Now feeling better, the Parrishes have been able to discontinue intravenous antibiotics, though they still must take other medication and keep a close watch on their health. The family recently took its first vacation in five years, which included horseback riding for the kids.
"This disease has been an awful, painful thing to go through, but I take joy in my kids," Susan said. "Even though they have been through so much, it has made them into the wonderful people they are. This has made them very strong in the faith. They've learned that life is short, that there are no guarantees -- except for their future with Christ.
"When everything is over and done with in this life, I want to look back and see that we asked, 'What Would Jesus Do?'" she said. "The answers to all our other questions will be revealed in his time, not ours."
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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JimBoB
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Very sad story.
I didn't see anyplace where they had tried herbs or not. Wonder how much that would have helped.
I am in Wisconsin, 24/7. Been here all my life except for a few times traveling.
Got my tick bite here.
Doctors in Florida didn't know what they were doing for them. BUT neither do the doctors here in Wisconsin know what they are doing when it comes to Lyme.
CaliforniaLyme
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Member # 7136
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JB, what do you htink of the Marshfield CLinic>?
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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JimBoB
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I haven't heard anything good about it on here. My duck was thinking of doing a test for Lyme on me and said he was going to send it to Marshfield, but I had heard such not good things about it, so told him to forget it.
I had wanted a Bowen test at the time, but he wouldn't do that.
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NP40 has the scoop on the Marshfield clinic, closley connected to Mayo. Need I say more.
Posts: 582 | From milwaukee wi | Registered: May 2005
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I went to Infectius disease Dept. for lyme and the darn doctor did a PAP test on me. Went back to my regular Doctor SCREEMING "What kind of arthritis do I have In my Crotch!!!" My Doctor was very angry and reported that Doctor for what he did!!I am sure he is not there anymore!!
That was the worse DUCK I have ran in to!! I was sick for 15 years because of Marshfield Clinic!! They do have good Doctors for many other things, But NOT LYME!!! Thier Infectius Desease Dept needs to go back to school!!
To get back to your story, Very sad!! I think I know Sue.Her name and her kids seem to be very familur too me.and I seem to remember the story well.Do you know how they are today??
Posts: 36 | From Pittsville Wisconsin | Registered: Feb 2006
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I live only a half hour from Marshfield and I drive 3 Hours North to Eagle River for treatment!! I really dont like Marshfield at all, I can tell you lots about Marshfield!!
But the lab is O.K.I have had problems with a few tests they did, but had nothing to do with the lyme tests. If your Doctor is going to send blood for testing, they do a good job on that,
My tests came back positive for lyme,Marshfield clinic is a good place to have the tests done!Its the Infect. desease Doc,s that are really bad!! Same with Noro Doc's too!!Not good!! Sorry for going off topic.
Posts: 36 | From Pittsville Wisconsin | Registered: Feb 2006
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