30 years and still no progress in Lyme treatment

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30 years and still no progress in Lyme treatment

Post by logmoss82 » Sun 29 May 2016 1:09

The following is an article from the New York times published in 1989!
It may as well have been written today. The complaints of symptoms, lack of understanding by doctors and treatment failures sound exactly like what me and many others still experience in 2016. It's amazing how little progress has been achieved in treating this disease.

For 3 With Lyme Disease, Pain Without End


Published: January 4, 1989

Because of Lyme disease, Claire Palermo walks with a cane now. At the age of 39, she says she sometimes feels like she is 82. In the last two years, she has seen 42 doctors, spent $30,000 on medical treatment, missed four and a half months of work and experienced a multitude of symptoms, from arthritis and heart palpitations to profound fatigue and depression.

''This disease has broken me as far as I can be broken,'' she said.

The chief public information officer for Westchester County, a woman known for her unflagging energy and upbeat outlook, Ms. Palermo's disease is so advanced that it has defied treatment and has shown little indication of going away.

In the borderlands of New York City these days, the Lyme disease caseload seems to be multiplying as fast as the deer tick responsible for transmitting the bacteria that causes the disease. As of Dec. 23, preliminary figures showed 2,633 suspected cases reported by doctors to the New York State Department of Health for 1988, up from 877 cases in 1987 and 443 the year before.

Similar increases have been seen in Connecticut and New Jersey. At least 35 states have reported cases, New York having the most. The disease is in Europe, Australia and Asia.

From the Hamptons marshes to the Westchester woods, everyone seems to know someone who has come down with Lyme. It is usually caught in the summer, when people are outdoors and the ticks are in their nymph stage, no bigger than a speck of pepper or a comma in this sentence.

Physicians stress that most cases are detected early, and that the vast majority of these are cured with antibiotics. Detect it late, and 10 to 25 percent do not respond to rigorous treatments of intravenous antibiotics.

These are the hard cases, the ones that make the disease so maddening.

''To be honest, I don't know what to do with the patients who have recurrent symptoms after they've been treated, and I don't think anyone else does either,'' said Dr. Thomas Rush, director of the Phelps Late Lyme Center in North Tarrytown, N.Y. The treatment center is for those who have advanced beyond the initial stage, often characterized by a ring-shaped rash spreading out from the site of the tick bite and flu-like symptoms, to the late stage, which can involve arthritis, heart problems. paralysis of a facial nerve, and visual, emotional and memory disturbances.

''The patient is frustrated, and the doctor feels helpless,'' he said. Years of Pain and Debilitation

While researchers continue to explore new treatments, lives are falling apart. The psychological toll can be devastating, with jobs lost, school missed, dreams scaled back and families strained. Victims, relieved that what ails them is not fatal, nevertheless agonize over the prospect of years of pain and debilitation.

Adding to their torment are the unknowns. Blood tests are still not definitive - the disease may not be detectable until weeks after the bite, and results sometimes differ from lab to lab. The rash, the best means for early diagnosis, does not appear in at least a quarter of the cases. And because Lyme disease has only been of widespread concern since the early 1980's, doctors and researchers cannot predict its long-term course.

This year, support groups have sprung up in Westchester County, Dutchess County and on Long Island.

Here are the stories of three people with chronic Lyme disease. Rash Ignored As Spider Bite

Claire Palermo lives alone in Cortlandt, N.Y., next to a deer-tick paradise - 1,500 acres of parkland filled with tall grass, field mice and deer.

Through her work for Westchester County, Ms. Palermo had learned the basics of the illness. But when she got a small rash in the spring of 1986, she thought it was a spider bite and ignored it. In the summer, she came down with mycoplasmic pneumonia and began suffering back pains. Still, she did not make the connection.

''We had been disseminating information on Lyme disease, but like any disease, you think I'm not going to get it,'' she said in a recent interview.

She had recovered by the following spring, but in May 1987 Ms. Palermo noticed a large rash on her arm. Soon after, she had shooting pains in her right shoulder and fatigue set in. She caught herself falling asleep as she drove to work. One morning, she collapsed in the shower.

On July 27, 1987, she went to a doctor in White Plains, who, after examining her and hearing that her dog, Mabel, had Lyme disease, sent her to the hospital for two weeks to be treated with intravenous antibiotics. But she kept getting worse. Pains started in her wrists and knees and ankles. She couldn't sleep. She felt dizzy and was walking into things. 'My Hands Were Like Claws'

''My hands were like claws,'' she said. ''My fingers were so stiff, I used to cry in the morning because I couldn't hold my toothbrush.''

Last June, she found a doctor on Long Island who was a ''late stage'' Lyme sufferer himself. His standard first-visit form listed 34 symptoms. Ms. Palermo circled 30. Two blood samples tested positive.

He put her on an experimental, long-term course of oral antibiotics -3,000 milligrams of amoxicillin daily. Meanwhile, another doctor treated her depression with Elavil, a mood-elevating drug often prescribed for those with chronic illnesses. ''Lyme disease was interfering with my life,'' she said, ''but the depression was interfering with my ability to deal with the pain of the disease.''

Lyme disease has changed her ways too. In summer her garden no longer teems with wood hyacinths, chrysanthemums and daffodils. She has stopped feeding the birds in her backyard, since they, too, carry the deer tick. And she can't go into her yard ''without feeling jeopardized.''

But now, although her symptoms, like pain, are nothing that doctors can measure, she feels she may at last be pulling through. ''I truly believe I will not be like this forever,'' she insists. ''It's only in the last month that I've been able to keep up, that I have the energy to have an argument. I don't feel like an old woman anymore.'' 11 Months To a Diagnosis

Jane Benjamin remembers the night in February 1987 when she stepped off the train in New Rochelle feeling as if she had the flu after a full day of dancing in New York City. That night, she fell asleep while doing her homework, and the next morning she complained to her mother of a burning sore throat.

For the next four months, Miss Benjamin, now 16 years old, was so tired she could not get out of bed. She kept up with her academic work through bedside tutoring. But she missed almost an entire semester at the School of American Ballet, where she takes classes.

She did not have mononucleosis, a brain tumor or leukemia, doctors said. ''They could tell me what it wasn't, but couldn't tell me what it was,'' she said. ''In the beginning, all the doctors thought it was totally psychological.''

In summer, she regained her strength and attended ballet camp. But last Christmas, she got sick again, sleeping up to 17 hours a day. Never Noticed a Rash

In January, her illness was finally diagnosed as Lyme disease, based mainly on her symptoms. The first blood test showed she had a few antibodies, but was inconclusive. Later tests were both negative and positive. She had never noticed a rash. This past summer, after a few months of oral antibiotics, Miss Benjamin thought she had beaten the illness for good. A month ago, however, all the symptoms came back with a vengeance - fatigue, headaches, eye pain, joint aches. She describes her sensations with a graphic honesty: her eyes feel ''rusted'' and give her ''clicking'' sensations, her brain ''feels like it's bleeding from the bottom of the skull.''

''This is the first time I have really felt sorry for myself,'' she said. ''I can't just stop my life now. I'm only 16 years old. This doesn't seem fair.''

Consolation comes from friends and family - a close friend is a girl her age who also has chronic Lyme disease. ''Sometimes, Bernadette and I sit around,'' Miss Benjamin said, ''and say, 'When we get better, we're going to have the biggest party in the world.' '' 'It's Like I Have Leprosy'

For Frank Zeoli, a tree cutter from Long Island, Lyme disease has been less a grim exploration of physical pain, though his is intense, than one of psychological pain.

''The aches and pains you can deal with,'' he said. ''But what happens to your mind - the memory loss, the confusion, the depression - that I can't take. It's a nightmare.''

The psychological pain does not end there, however. Mr. Zeoli and his wife, Linda, are struggling with rejection from their extended families, both of which live within five miles of their home in Sound Beach.

''We feel so alone,'' he said, unsuccessfully holding back tears. ''It's like I have leprosy or something. Some members of the family think that maybe it's make-believe because sometimes I look good. But family support means more than anything. You need your loved ones around rooting for you.'' Transmitted Only by Ticks

The disease is transmitted only through tick bites, and researchers have never found a case of it being transmitted from one person to another, even through blood transfusion, breast-feeding or sex.

Mr. Zeoli first became ill in June 1986 while working for a tree-cutting concern on tick-infested Shelter Island. He developed the telltale rash and saw a doctor. A blood test was negative, but the doctor diagnosed Lyme disease anyway and prescribed oral antibiotics.

In February, 1987, Mr. Zeoli had to stop working. ''I thought I was getting old before my time,'' the wiry 32-year-old said. ''I would get nauseous and disoriented in the tree and drop my chainsaw.''

That same month, he had another blood test. It was positive,and he immediately began two weeks of intravenous antibiotics. ''I went back to see the doctor after the treatment, and he insisted I was cured,'' he said.

A few months later another doctor prescribed a different antibiotic, taken orally, but that, too, failed to alleviate his joint aches, headaches, speech difficulties, listlessness and nausea. ''The doctor told me I should just try living with it until a new treatment came out,'' Mr. Zeoli said.

Now, more than a year later, he has still not returned to work, though his company has provided worker's compensation. His wife has taken a job.

''Sometimes,'' he said, ''I wake up and look in the mirror and say to myself, 'Okay, this is it. It's going away today.' But then I have to lie down.''

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Re: 30 years and still no progress in Lyme treatment

Post by nnecker » Sun 29 May 2016 14:48

They sound like typical Lyme kooks to me.Not much different from this:
Frequent Lymekook Contributor (1K+ posts)
Member # 5355

The question in my mind is what happens when we use cyst busters. Do they open up and spill out viable spirochetes or are they killed?

HONORED LymeNut.kook Contributor (25K+ posts)
Member # 12673

Yes, the cysts open up when the right kinds of medicine / enzymes / specific supplements have been able to break through.

Yes, then spirochetes spill out in large numbers - larger in number than before.

Spirochetes are not killed by cyst busters (generally speaking). Spirochetes require additional Rx / enzymes / specific supplements / Rife frequency, etc

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Joined: Wed 5 Sep 2012 18:48

Re: 30 years and still no progress in Lyme treatment

Post by duncan » Sun 29 May 2016 15:27

It is indeed disheartening to see how little progress we have made, logmoss82.

Small wonder when we see randomly demeaning posts like that from nnecker (who may still be working out the kinks in basic sentence structure).

The comparison between this article from 1989, and most we see appearing throughout North America and Europe today, is striking in its continued relevance, and should be cause for alarm in the Lyme medical community, -- but I suspect will not even raise an eyebrow in certain besieged - and retreating - mainstream strongholds.

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Re: 30 years and still no progress in Lyme treatment

Post by logmoss82 » Mon 30 May 2016 1:54

Whats interesting is the doctor's honesty when he says 'I don't know how to treat patients who don't respond, and I don't think anyone else does either.'

Today the doctors have such hubris that instead of admitting they are stumped, they blame the patient, call them crazy and make up terms like 'post lyme treatment disorder' to try to dismiss the symptoms. Seems like medicine has gone backwards instead of making progress here.

You would think in 30 years we at least would have better testing.

Another doctor in the article suggests to his patient to 'wait until a new treatment comes out.' 27 years later we are still waiting.

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