So much confusion for this poor man...My heart goes out to him!
SEARCHING FOR answers Lacking the strength that he used to have, Chapman sits down while working with his wife, Trista, on pottery for an upcoming show. He tires easily but keeps working. A new diagnosis gives local potter Phil Chapman hope
Date published: 6/11/2006
THE SETTING was a familiar one for Phil Chapman--another doctor's office, another round of test results.
After listening to a barrage of information on his latest blood work, Chapman asked his physician to break it down for him.
"So when I talk to my mom tonight, what do I tell her?" asked Chapman, a Fredericksburg potter for 30 years.
"You tell her you've got Lyme," his doctor answered.
For many, the diagnosis would be discouraging. Lyme disease, a bacterial infection transmitted by ticks, can cause a range of problems, from fatigue to crippling joint pain.
But for Chapman, the news was a second chance.
Only seven months earlier, he'd been told he had ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.
The pace of ALS varies as it robs its victims of their ability to move, speak and even breathe on their own. But the end result is always the same: death.
The Free Lance-Star chronicled Chapman's condition in a story in December, just before the community gathered for a fundraiser and retrospective of his work.
Now, in February, he was looking at a different, more hopeful diagnosis.
The news didn't mean he didn't have ALS. Some patients, as unfair as it may seem, can suffer from both ALS and Lyme.
But maybe, just maybe, Chapman hoped, the muscle weakness and fatigue he'd been feeling for more than a year were from Lyme, a condition far more treatable than ALS.
On top of that, his doctor informed him that he had high levels of lead in his body, which also could be contributing to his illness. That, too, could be treated.
That evening, he and wife, Trista, toasted the news with champagne.
"We learned all about ALS. Now we have to learn all about Lyme," Chapman said at the time. "Back to the Internet."
Since then, the overnight recovery he had hoped for hasn't materialized.
He's still tired. His right side has weakened, and he loses his balance more easily. His speech has slowed.
The frustration he and Trista feel has been compounded by the amount of conflicting information available on Lyme disease and its relationship--or lack thereof--to ALS.
Chapman's read a stack of books on the subject and pursued a host of traditional, alternative and homeopathic remedies over the last four months.
"I'm supposed to be learning something about patience, but I'm antsy," he said. "I want to get back to work. I want to be what I was."
He gave up creating his signature raku pottery because his condition made the labor-intensive work too difficult.
Instead, he collaborates with Trista, who is also a potter, on some of her work.
He gets impatient with himself, Trista said, and it's hard to watch.
"Some days, he's just not Phil at all, all day long, and it wears me out," she said. "I know how much he wants to be here, and it breaks my heart to see him failing."
However, she said, his impatience is what fuels his fight.
Though it remains unclear whether Chapman has ALS, Lyme, both or neither, what he does have is hope.
"Phil's not a giver-upper," she said.
Nothing to lose, lots to gain When Chapman was diagnosed with ALS in August, he pledged to do all he could to fight the disease that paralyzes its victims.
He joined a drug trial at the University of Virginia, started practicing yoga and meditation, and underwent biofeedback, a sort of relaxation therapy to help him channel positive, healing energy.
Though there is no cure for ALS, Chapman hoped his efforts would slow its progression.
His response to the Lyme diagnosis has been just as aggressive. And this time, the reward--the potential for restored health--is far greater.
Chapman reasoned that if he did indeed have Lyme disease, it was advanced and beyond the reach of antibiotics. But, he concluded, if he could boost his immune system with dietary supplements, antioxidants and vitamins, he might be able to fend off the infection. His strict regimen includes swallowing at least 14 pills a day.
He also purchased a Rife machine, an electronic device the size of a toaster. The theory behind the machine, which is not FDA-approved, is that it emits a frequency that can shatter disease-causing organisms in the body, like the bacteria responsible for Lyme.
Chapman's doctor warned that Trista also may have Lyme, so every 10 days the two of them sit in front of the Rife machine for 15 minutes at a stretch, adjusting the frequencies and noting their reactions.
The device, which has its roots in early 20th-century medicine, purports to treat every condition from dullness to bubonic plague, and has on occasion popped up on QuackWatch.org, a health fraud Web site.
Chapman's theory: If it doesn't hurt him, why not try it?
"It's all just snake oil," he kidded one day before a Rife session.
"Don't say that," Trista chided. "Part of it is believing in it. You have to believe you'll get better."
Fredericksburg resident Frances Bishopp knows Chapman's frustration all too well.
She was bedridden, suffering from fatigue, lower back pain, dizziness and vision problems for a year before doctors diagnosed her with Lyme disease.
Seven months of intensive antibiotic treatment made the Fredericksburg resident feel even worse, so she tried using a Rife machine. She still suffers serious bouts of vertigo, but is able to leave the house.
"I'm far from saying Rife has cured me, but a year ago this time, I was in bed and now I'm not," said Bishopp, who introduced Chapman to the device. "And that's how you have to look at it."
Bishopp met Chapman after a friend of hers read about him in The Free Lance-Star and thought his symptoms sounded similar to Bishopp's. She urged Chapman to get a Lyme test.
"I think he was at a point where it seemed like a good idea and why not try it," she said. "He'd been given such horrendous news by everybody else."
'Desperate and rightfully so' In most cases, ALS and Lyme disease should behave differently, doctors say.
While ALS causes a progressive weakness in the body, Lyme is more likely to start with a rash, headaches and aching in the joints, sometimes misdiagnosed as arthritis.
However, if the bacterium that causes Lyme got into the spine, it could mimic symptoms of ALS.
It's rare, but possible. And since there's no one test that identifies ALS--rather, it's diagnosed through a process of elimination--plenty of ALS patients pursue a Lyme diagnosis.
Such is the case at the Methodist Neurological Institute in Houston, said Dr. Ericka Simpson, co-director of the hospital's MDA/ALS Clinic. Physicians there try to be supportive of their patients' efforts--to a point, she said.
"Our patients are desperate and rightfully so, and we try to be very open to them seeking alternatives," she said. "If it doesn't hurt you physically, emotionally and financially, then sure."
Chapman's first Lyme test, done just before doctors at VCU Medical Center in Richmond diagnosed him with ALS, did not detect any infection. But the new one, sent to a lab in California, came back positive.
Three months later, Chapman said he still feels as sapped as he did when he had only the ALS diagnosis.
Then again, any time he feels well he goes to work, either helping Trista at their Sophia Street Studios pottery shop or researching his condition.
"I am starting to try to be more active, and that might be knocking me right down," he said. "So if I'm feeling better I might not know it."
He'd love a full recovery, but he's not unrealistic about his chances either.
"I'm still heading downhill. This [right] arm is smaller than this arm. This arm is still getting weaker," he said recently, shrugging.
"Maybe I have ALS."
Confusion and hope Chapman isn't the first patient to bounce between two such diagnoses.
Lyme disease has been known to mimic any number of disorders--among them multiple sclerosis, fibromyalgia, chronic fatigue syndrome and even ALS.
A quick Internet search turns up plenty of anecdotes about folks diagnosed with one and then another. There's even the suggestion that ALS is merely advanced Lyme disease, a theory not supported by mainstream medicine.
A thorough medical exam should differentiate between the two diseases, doctors say.
ALS affects the upper motor neurons, nerve cells running from the brain to the spinal cord, and the lower motor neurons, which run from the spinal cord to the muscles, said Dr. Stephen Scelsa, director of the neuromuscular division and the ALS Center at Beth Israel Medical Center in New York.
An ALS patient should experience progressive weakness, usually starting in the hands or feet and spreading to the rest of the body, said Scelsa, who is also an associate professor of neurology at Albert Einstein College of Medicine in the Bronx. Symptoms could also start in the tongue or swallowing muscles, he said.
Someone with advanced Lyme disease would experience pain in the joints, arms and legs, more like arthritis than a weakness, he said.
"On the Internet, the association [between Lyme and ALS] is certainly exaggerated," Scelsa said. "I think there are very, very rare circumstances where there can be confusion, but almost never."
In Chapman's case, he was exhausted all the time and his right foot began to drag inexplicably. Eight months later, after ruling out a number of other illnesses, doctors gave him the ALS diagnosis.
In very rare cases, a patient has been diagnosed with ALS and then discovered to have been suffering from Lyme instead, said Dr. John Halperin, a neurologist at Overlook Hospital in New Jersey, who has studied patients with both conditions.
Some of the confusion rises from the Lyme tests themselves.
In the early stages of the infection, the body hasn't necessarily had enough time to produce measurable antibodies, so a test could come back negative even when the patient has Lyme.
Likewise, a positive test may mean the patient was once exposed or had Lyme previously, but not now, Halperin said.
Furthermore, some clinics--including the California lab that gave Chapman his results--have been criticized for not following guidelines set up by the Centers for Disease Control and thereby turning out too many positive Lyme tests.
Their defenders insist the federal protocols fail to recognize Lyme disease in many who are sick.
Said Chapman: "I feel like we're learning along with the doctors."
Regardless of what disease a patient has, it's important that he maintain a positive attitude, said Simpson of the Methodist Neurological Institute in Houston.
"The patients who do the best are the fighters," she said. "They already have decided that they're not going to let this disease defeat them."
One of Chapman's doctors at U.Va. did not support his decision to pursue Lyme treatments, so Chapman is no longer part of the ALS drug trial there.
However, he recently returned to U.Va. to see a toxicologist about his lead levels. And he's considering a trip to a clinic in Philadelphia that has treated patients with ALS, Lyme disease and heavy-metal exposure--all potential issues for Chapman.
On his down days, he said, he tries to focus on what he still can do.
"I am thankful. I can still raise my arm, use a pen. I am thankful," he insisted. "But I want more. I want to be normal."
Des Moines Register writer, Rob Borsellino, lost his life about 2 weeks ago to ALS. He ws dx 1.5 hrs. ago, and sick for 7 years.
I sent his wife, writer, Reka Basu, info on lyme; never heard back from her.
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It would be great if somebody from this board who was diagnosed with ALS could somehow try to reach out to this man. I know people mentioned improving on abx, and he seems not even be considering that as an option.
It's also depressing that all the doctors the reporter spoke with talked about lyme as causing pain and not weakness.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Hopefully the clinic he is considering in Philadephia is the one that offers the P.K. protocol -- feel the doc will do a thorough review of his medical records and hopefully can advise him.
Noticed the misleading comments from the neuro J.H. regarding Lyme testing -- there was a post about some of his journal articles yesterday.
Seems like the "experts" that always get quoted are from the wrong side of the fence.
I am not necessarily convinced that Rife is a "cure-all", but I had thought that sessions lasted an hour or so and were done daily or at least multiple times a week -- not one 15 minute session weekly? Just don't see how that could do much myself.
Bea Seibert
[ 14. June 2006, 11:32 PM: Message edited by: seibertneurolyme ]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
the doctor halperin in the above story is part of the limerix vaccine and by god the worst doctor there could be...let me tell you he wont treat you and then tell you that you are nuts..dont trust this doc...if you go to him god help you..you wont be treated and then hell laugh in your face... eriuc
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
Now I want throw up..for this one poor guy we know about there are hundreds more we don't that are falling falling through the cracks by crack pots.
-------------------- We are spiritual beings on a human journey...
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by humanbeing: Now I want throw up..for this one poor guy we know about there are hundreds more we don't that are falling falling through the cracks by crack pots.
But some of them live in Fredericksburg and read this article.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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