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» LymeNet Flash » Questions and Discussion » General Support » Bacterial disease treated for 18 months with multiple abx

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Author Topic: Bacterial disease treated for 18 months with multiple abx
lou
Frequent Contributor (5K+ posts)
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Here's another one to mention when they say no bacterial diseases require long term treatment:


NY Times


June 13, 2006
Personal Health
A Hidden Peril Lies in That Warm, Moist Air
By JANE E. BRODY

Barbara Jarvis was a tall, slender, physically active, health-conscious and very healthy woman living on Kauai, Hawaii's "garden island." In her early 50's, she began to experience shortness of breath, which she thought at first was a recurrence of the asthma she had as a child. Her doctor treated her for allergies and pneumonia.

But over the years Barbara got worse. By the time her symptoms were accurately diagnosed as an infection with mycobacteria that thrive in warm, moist places, her left lung was badly infected and her right lung was involved.

Complicating matters, Barbara had a terrible allergic reaction to the complex antibiotic regimen needed to control this disease. Despite the best treatment she could tolerate, and down to skin and bones, Barbara died at 62. She was a victim, her mother said, of "the medical profession's lack of education" about this disorder.

Mycobacteria are best known as causes of tuberculosis (M. tuberculosis) and leprosy (M. leprae). But there are a host of other mycobacteria, some causing prolonged, severe and life-threatening infections. The most common is Mycobacterium avium complex, which infected Barbara. Nontuberculous mycobacterial infections have been acquired from showers, hot tubs, gardens and, it seems, from the air people breathe, especially when it is warm and moist.

Disease on the Rise

Before drugs became available to control AIDS, mycobacterial infections were common and sometimes lethal complications of it. The infections can also be a problem for organ transplant recipients, who must take immune-suppressing drugs to keep from rejecting the organs. People with lung diseases like cystic fibrosis are also highly vulnerable to these infections.

In the 1960's and 70's, these infections occurred mainly in men who were heavy smokers with lung disease, said Dr. Steven Holland, an infectious disease specialist at the National Institute of Allergy and Infectious Diseases.

But now physicians like Dr. Holland who treat these infections are seeing more of them in otherwise healthy people, especially in postmenopausal white women who never smoked and have always been thin. While theories abound, no one knows why.

What makes the mystery even more intriguing is the ubiquity of infectious mycobacteria in the environment -- in soil and water, including potable water from municipal water supplies. Why is it that some people get these diseases and others don't? And why are those who do now mainly older, white, slender women?

Dr. Holland says he heads "a huge program trying to understand why this is happening."

He added that nontuberculous infections "are certainly being diagnosed more often and, at the same time, they go undiagnosed tragically often, as happened to Ms. Jarvis."

The heat and humidity of Kauai were thought to be factors in her case; nontuberculous mycobacteria infections are more common in Florida and Hawaii. But, said Dr. Gwen Huitt of the National Jewish Medical and Research Center in Denver: "All across the country, doctors who treat this infection are seeing a rise in this disease. It's not just the hot, humid states."

Her colleague, Dr. Michael Iseman, believes changes in water practices play a role. High water temperatures can kill mycobacteria, and, Dr. Iseman said, "Thirty years ago, the temperature of home hot water heaters was capped at 145 degrees and in hotels and hospitals at 165 degrees.

"Now, because of energy conservation and fears of scalding children, water heaters are capped at 125 degrees or less, temperatures that permit -- and maybe even encourage -- the growth of mycobacteria."

In addition, Dr. Iseman said, in years past, "most people washed by taking a bath."

"Now," he said, "nearly everyone showers, often in enclosed stalls, which is a great way to expose one's lungs to mist containing mycobacteria. The potable water in both homes and institutions are contaminated with these organisms."

Indoor hot tubs are another problem, even if people follow all the purification instructions. Just ask the five members of the Gamble family of Boulder, Colo., all previously healthy, and all of whom acquired M. avium complex and M. fortuitum infections from the hot tub they installed a year earlier in an indoor sunroom.

Kathy Gamble, then 46, had used the tub only twice but sat nearby when her children were in it. She was first to get sick, with shortness of breath and a dry cough that progressed to fevers as high as 104, chills, night sweats and weight loss.

Infected by a Hot Tub

Despite antibiotic treatment for suspected pneumonia, she got worse and worse; within two months she was unable to walk across a room. The doctor then thought she had tuberculosis and the whole family was quarantined, but she got no better when treated for that disease.

It took four months before her disease was correctly diagnosed, by which time her husband, Tom, 44, and three sons, 14, 12 and 9, had developed similar symptoms. Nontuberculous mycobacterial infections are not contagious; the family acquired the disease from the hot tub.

All were finally treated successfully at National Jewish Hospital, considered the leading medical center for mycobacterial infections. Mrs. Gamble required 18 months of treatment with multiple antibiotics and steroids. Taking no further chances, the family got rid of the hot tub.

"When you're in a hot tub, your nose is at the level of mist when the jets are turned on," Dr. Huitt noted. Dr. Iseman suggested installing hot tubs outdoors to reduce the risk. For stall showers, an opening at the top of the door and a fan while showering may reduce the risk.

Diagnosis and Treatment

A further mystery of nontuberculous mycobacterial infections is why most people never get them even though virtually everyone is exposed over and over again. In some cases involving otherwise healthy people, there seems to be an underlying genetic susceptibility, which may explain why the entire Boulder family got sick.

And some people who become infected develop no symptoms that warrant therapy, Dr. Holland said. "People can harbor the organisms for many years without them causing trouble," he said, but it is not known why some people can keep the bacteria under control.

Diagnosis is typically made with sputum samples, along with a chest X-ray, CT scan or both. One sputum test is not enough: many people seem to quickly clear the infections on their own. It is also important for samples to be analyzed by labs with expertise in mycobacteria.

Treatment involves two or more antibiotics taken simultaneously, often along with steroids. Multiple antibiotics are given to reduce the ability of the bacteria to develop resistance. Steroids are used to quiet hypersensitivity reactions in the lungs. Sometimes surgery to remove part or all of a lung is necessary to reduce the amount of diseased tissue the drugs have to work on.

Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Lymetoo
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YIKES! That's quite a story. So is this the same thing as mycoplasma or not??

--------------------
--Lymetutu--
Opinions, not medical advice!

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stella marie
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Good find lou, thanks for taking the time to post.

Stella Marie

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Stella Marie

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Lymelighter
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I love the part about steroids. That would be dreadful for a co-infected Lymie [Eek!]
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Mathias
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Mycobacteria is not the same as mycoplasma. They are completely different bacteria.

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Mathias

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treepatrol
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quote:
Originally posted by Lymetoo:
YIKES! That's quite a story. So is this the same thing as mycoplasma or not??

Mycobacterium (My�co�bac�te�ri�um) (mi''ko-bak-tēr-eəm) [myco- + Gr. baktērion little rod] a genus of bacteria of the family Mycobacteriaceae, order Actinomycetales, occurring as gram-positive, aerobic, mostly slow-growing, slightly curved or straight rods, sometimes branching and filamentous, and distinguished by acid-fast staining. It contains many species, including the highly pathogenic organisms that cause tuberculosis (M. tuberculosis) and leprosy (M. leprae)

Mycoplasma (My�co�plas�ma) (mi�ko-plaz''mə) [myco- + Gr. plasma anything formed or molded] a genus of bacteria of the family Mycoplasmataceae, made up of round, highly pleomorphic, gram-negative cells that are bounded by a single triple-layered membrane and lack a true cell wall. Cholesterol or another sterol is required for growth. M. mycoi�des causes pleuropneumonia in cattle, and other species comprise the pleuropneumonia-like organisms (see under organism). The organisms are parasites and pathogens widely distributed on the mucous membranes of humans, animals, and birds, and are common contaminants of animal cell cultures.

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Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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JJ
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Mycobacterium Chelonae...I was dx with this in 1999, the start of my nightmare.

"Something" bit me in the back of my leg, causing a big red "ring" (solid in color). The actual bite area continued to get bigger, hot and ugly over time, a couple months. A biopsy was taken and nothing came back on it. The area where the biopsy was taken would not heal and now I had a hole in my leg which drained continually for several months.

Finally, I talked a surgeon into cutting the area out because it was "eating the flesh" and getting bigger and uglier by the day. 3 days after I had it cut out, 2 1/2 months after the biospy, something finally grew out of it....M. Chelonae. I was told by the idiot doc that if I was HIV positive, this would kill me. I asked him how he knew that I was not HIV positive? No one has ever checked (with no reason to...). He dropped me like a hot potato, no, I ran like the wind...

This was the start of my story. I was put on 3 different abx and told that I could be on them for up to 18 months. I was herxing (didn't know what that was) so they kept changing my meds. After 4 months, the leg finally healed and after having some lab testing done at National Jewish Hospital, was deemed adequately treated.

I was still so terribly sick so I flew out to National Jewish because I still thought that it was the M. Chelonae causing the issues.

It was there that I had a doc from NY who said "you have every symptom of Lyme" and sent a test to NY and ta-dah, it was positive. At the same visit (1 week in Denver) the rheumatologist wanted me tested every hour (when I ran a fever) for the co-infections. When I returned home, my doc refused so I was not tested continually for the co-infections. (My great LLMD dx me with them a couple years later).

It was because of this I finally received IV abx for Lyme and got treatment for it. A local Rhuemy in MN told me that it was "impossible" to get Lyme disease and a mycobacterium at the same time...go figure. (he is the same one who told me that it was "impossible" to have bone, joint and muscle pain at the same time)

That is like saying it is impossible to have Lyme in MN! Idiots!

I researched these mycobacterium (of different types)for months and still keep tabs on them because I still have pain in my leg and sometimes just wonder if it too is dormant like the Lyme.

They are dangerous and when you have a compromised immune system you are a moving target for some of this stuff. It is scary!

Today, I am fine, off meds for 2 years now, work with homeopathy to maintain my current health and have my life back!

Just thought I would share a bit of my story relating to this!

JJ

Posts: 919 | From Minnesota | Registered: Jan 2001  |  IP: Logged | Report this post to a Moderator
   

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