posted
I am posting this true story from a magazine in 2 parts. Please try to guess the diagnosis based on the info in Part 1 before reading the answer in Part 2.
I am sure most Lymies will identify with many aspects of this story. ____________________________________________________________________________
All In Your Head
There is one Sunday morning that Mike Howell will never forget. It was about seven years ago, January 7, 2001. For Howell, the day began like any other Sunday. He woke early and dresed to attend worship service at the church across the street from the house he shares with Linda, his wife of 27 years.
But this morning would be different. Howell walked into the church and lost his sight.
"Linda went on into the sanctuary but I wanted to check out the church bulletin board. As I approached it, I saw flashes of pink and blue lightning -- and then I couldn't see at all," Howell says.
He stood in front of the bulletin board without moving, forcing his eyes open because he thought they were closed. Standing silently and alone, he broke into a cold sweat. The sensation in his eyes lasted two to three minutes, followed by a blasting ache in the back of his skull. Then his sight returned "like a small curtain rising."
He proceeded quietly into the sanctuary, sat down next to his wife and whispered to her what had just occurred. After church, as the congregation filed out, Linda corralled a nurse friend and told her about Howell's episode.
At the nurse's advice, the Howell's drove to the local hospital where doctors ran a CAT scan, did some blood work and tests, suspecting a stroke. "But they couldn't find anything," Linda says. Howell was discharged with a headache and a follow-up referral with his primary care physician.
Something's Wrong
Mike Howell, 53, is a solid, consistent kind of guy, a hard-working man devoted to his wife and kids. Steady and reliable both as a family man and an employee. Howell, of Sodus, New York, worked as a stationary engineer for Eastman Kodak for 25 years, operating and maintaining industrial boilers.
He rarely missed a day at the job and always showed up on time. Yet within weeks of the episode at the church, Linda noticed that her steadfast husband was changing in alarming ways.
"He would have spells where he would forget how to get to work. He couldn't spell his name," Linda says. "It was very scary. I knew we were in trouble."
Howell visited his primary care doctor, Jeannine Dolan, M.D., and then a neurologist. After examinations, more tests and an MRI, doctors found white matter lesions on his brain but no evidence of stroke.
"The neurologist wasn't sure what was going on," Linda says. By the end of January, the doctor was calling Howell "a mystery man." He suggested a psychiatric exam and recommended a psychotherapy group.
In the meantime, Howell was suffering from violent headaches which didn't respond to any of the usual over-the-counter remedies. "He was in so much pain that he would grab the back of his head and hold it," Linda says. "Nothing we did would stop it."
"The left side of my body was numb. I just didn't feel right," Mike recalls.
By the end of March, Linda could barely control her frustration and concern. The more the doctor talked about Howell's "psychological problems," the angrier she became. "I'd been married to this man for over two decades and I knew this wasn't psychological," she says. Sitting in the doctor's office one day, her temper exploded.
"I totally lost it. I was so angry that I was shouting at the doctor and crying. He looked over at Mike and said, 'It doesn't look like your wife is handling this very well."
They never went back.
A Long Journey Begins
A visit to a second neurologist provided no additional insight. By June, Linda took Howell to a third neurologist who conducted more tests, including a spinal tap, another MRI and an additional psychiatric exam to evaluate him for depression and memory loss. He was tested for Mad Cow Disease (Bovine Spongiform encephalopathy, BSE), Multiple Sclerosis (MS) and other neurologic conditions.
Howell continued to suffer from debilitating headaches but now he had episodes of face droop and slurred speech.
"It was like he was drunk, like his mouth was full of novocaine," Linda says.
Howell would have periods where he didn't recognize Linda or their children. "There was no rhyme or reason to it. He would be completely out to lunch, have no idea where he was or who I was ... and then it would go away," Linda says.
In early December, Howell was diagnosed with Binswanger Disease, a rare and progressive form of dementia that is characterized, among other things, by memory and cognition losses and difficulty in walking and speaking. There is no cure. For the Howell's it was a devastating death sentence.
"Mike was given five years to live," says Linda.
Already grieving the loss of the stong husband she loved and now faced with his inevitable slow decline with no hope for recovery, Lindqa mourned deeply. To honor their life together and celebrate the vibrant years they had had as well as the limited time still remaining, the Howell's decided to renew their wedding vows. They planned a summer ceremony and invited friends and their extended family.
"The family was all there. They came in from all over. Our sons and grandson walked me down the aisle," Linda says. "It was wonderful."
A New Answer
As the months progressed, Howell continued visiting doctors for various tests and ongoing treatments. Additional MRI's revealed more white matter lesions in his brain.
He underwent chelation therapy to address heavy metals in his blood due to working in an industrial environment.
As his symptoms worsened, he became increasingly dependent and began using a wheelchair. Settling down for the long haul, Linda quit her job in order to take care of him full time.
In October 2004, Howell was referred to yet another doctor for a consult -- Heidi Schwarz, M.D., a neurologist at the University of Rochester Medical Center and assistant professor of neurology at Strong Memorial Hospital. Almost immediately, the Howell's sensed this doctor was different.
Schwarz examined Howell, reviewed his medical history and listened intently to Linda describing her husband's symptoms. "She never once looked at us like we were crazy," Linda says.
"I was the fourth or fifth neurologist that Mike had seen. He had an abnormal MRI scan and risk factors for stroke," Schwarz says. "We were trying to control those risk factors ... and yet he was getting worse."
During one subsequent visit while Schwarz was examining Howell yet again and "we were scratching our heads," Schwarz says, "Mike's wife happened to mention that some lab work years back had showed that Mike had ....................................... ___________________________________________________________________________
Can you guess the correct diagnosis for Mike Howell?????
Will post Part 2 with the actual diagnosis later today or tomorrow.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Neuroborreliosis.
And possibly babesia.
Of course, none of these brilliant doctors had ever thought to run anything more than an ELISA to rule out lyme (thanks, CDC). Thanks to its stunning accuracy rate of about 30% in late stage disease, misdiagnosis is a lot more common than a correct diagnosis when it is used as a "screening" tool by idiot ducks.
The symptoms are sure familiar!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Migraine with aura, that's the easy part. Since it has many causes, figuring out which one is responsible isn't as easy.
One of the (many) causes of migraine is high vitamin 1,25D, like most lymies have. Also, lyme can interfere with normal thyroid homone processing, and that can produce migraines too.
He did metals chelation and felt worse. Been there done that. Metals polarize the immune system toward the Th2 side, which helps to compensate for lyme's polarizing it toward Th1. Removing metals means Th1 becomes even more overexpressed, so the patient feels even worse.
The face droop and slurred speech might be Bell's palsy. But, just like migraine, that's merely a dx, not an explanation of the cause.
So far this could all be due to lyme, but there's not enough information to rule out other possibilities.
Tests I'd run: vitamin 25D, vitamin 1,25D, T4, T3, TSH, and check for lymphoma. If the thyroid numbers test normal, lymphoma is not present, 25D is low and 1,25D high, I'd say spirochetal infection, and try low dose abx to see if he herxes.
Note: I'm not a doctor, but it feels like I've gotten a medical education from lyme.
Posts: 727 | From USA | Registered: Mar 2006
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How about another clue -- Both LymeToo and BettyG have been diagnosed with this problem -- and no, it has nothing to do with gender.
Will post the answer later tonight after I finish typing.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Cobweb
Unregistered
posted
Anybody who can spell neuroborialis without looking at it doesn't have it! Michele -what are you doing here?
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Cobweb
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Besides neruoborialis isn't diagnosed through lab(blood) work. And if they were scratching their heads it was probably lice-all he needs is some mayonaise and a shower cap.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Cobweb: Besides neruoborialis isn't diagnosed through lab(blood) work. And if they were scratching their heads it was probably lice-all he needs is some mayonaise and a shower cap.
Ha!
Very true -- it's kind of a clinical diagnosis too! But positive blood tests, migraines, facial palsies, brain lesions, abnormal lumbar puncture and abnormal bilateral SSEP will get you mighty close. Like lyme, of course you exclude everything else first.
It tends to evoke fewer eye-rolls than lyme, mainly 'cause no one knows what it is!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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