RuthHinWV
07-18-2007, 01:08 AM
The archaeologist of my own illness
I sifted through the years: perhaps I’d first gotten sick at Woods Hole with a mix of infections that make up the Lyme soup. With infections smoldering but symptoms under the radar, I could have been bitten repeatedly during my travels to the Hamptoms, to a campground in Duchess County, to a bed-and-breakfast in Bucks County, to Martha’s Vineyard & a dozen towns on Cape Cod, to beaches & parks & down the Jersey shore-all areas known for Lyme & babesiosis. Then there was the disastrous move to Chappaqua & our permanent residence in the woods.
It had taken years to get to the bottom of my strange illness, but I was lucky to be diagnosed at all-especially because the Lyme-babesiosis combination remains a confounding & toxic brew. One of the first to understand the implications was University of Connecticut physician Peter Krause, an expert in pediatric infectious disease. Patients infected with Lyme & babesiosis together often feel sicker, & stay sick longer, than those with just one disease. In one telling study, Krause found some 3 percent of patients treated for early Lyme were still fatigued six months later, compared with more than a third of those coinfected with babesiosis & Lyme. No wonder I felt so ill.
Yet babesiosis can be devastating on its own. It is fatal in 5 percent of patients, especially the elderly or those with immune problems. As apparently had happened to me, untreated babesiosis can smolder, persisting for months or even years. Un-manifested B.microti creates a worst-case scenario, leaving patients with such a high parasitic load that the illness, when it arrives- & it generally does-makes them especially sick.
As I learned while navigating my way back to health, the disease we colloquially call Lyme may consist of other tick-borne infections-& may or may not involve the spirochete associated with the disease discovered in Lyme, Connecticut, in 1975. A third category of infection, referred to as ehrlichiosis, is caused by the microbes Ehrlichia chaffeensis in the South & Anaplasma phagocytophilum in the North. Infecting the white blood cells, these microbes cause fever like babesiosis, & a deep painful malaise, as is often reported in Lyme. When Lyme disease patients are treated with the antibiotic Doxycycline, ehrlichiosis is treated as well. But when doctors treat Lyme disease with Amoxicillin or a variety of other antibiotics, ehrlichiosis persists. Many an “incurable” Lyme patient has discovered the existence of a second, lurking disease-ehrlichiosis-only to be treated with Doxycycline & finally got well.
Added to the triad of Lyme-babesiosis-ehrlichiosis are other suspect pathogens inhabiting the same ticks, among them the rod-shaped bacterium Bartonella henselae & Mycoplasma fermentans, both sometimes invoked as causes of neuro-psychiatric symptoms & chronic fatigue. A host of alternate tick-borne spirochetes still under investigation will never register positive on a Lyme disease test but may cause illness as well. As long as we live in suburbs carved into woods, we’ll be in the path of the tick tornado. No one would think of trekking through Africa without prophylaxis for malaria, yet we take that rist every day by venturing, without worry, though out own backyards.
Our personal risk stayed high until we left Chappaqua in spring 2004. Thought we never got a sick as we’d been in 2000 & 2001, we continued to relapse as long as we lived in the ecosystem, requiring new rounds of antibiotics that pushed the illness back, only to relapse again. I was meticulous about avoiding exposure, yet I could never be sure whether I relapsed because I suffered the controversial chronic form of the illness or had simply been bitten again. It was only after I moved to an urban high-rise surrounded by concrete that a final round of antibiotics extinguished my illness for good in 2005. As for Jason, he regained his hard-driving intellect after aggressive treatment for Lyme disease, but for a very long time, his pain & fatigue remained. He is currently pursuing his dream as a film student at Brown University, but he paid a hefty price, sacrificing his childhood for an infection that could have been cured swiftly if it had been treated early on.
Pamela Weintraub is a consulting editor at Psychology Today & executive editor at MAMM. She is also working on a book about tick-borne disease.
I sifted through the years: perhaps I’d first gotten sick at Woods Hole with a mix of infections that make up the Lyme soup. With infections smoldering but symptoms under the radar, I could have been bitten repeatedly during my travels to the Hamptoms, to a campground in Duchess County, to a bed-and-breakfast in Bucks County, to Martha’s Vineyard & a dozen towns on Cape Cod, to beaches & parks & down the Jersey shore-all areas known for Lyme & babesiosis. Then there was the disastrous move to Chappaqua & our permanent residence in the woods.
It had taken years to get to the bottom of my strange illness, but I was lucky to be diagnosed at all-especially because the Lyme-babesiosis combination remains a confounding & toxic brew. One of the first to understand the implications was University of Connecticut physician Peter Krause, an expert in pediatric infectious disease. Patients infected with Lyme & babesiosis together often feel sicker, & stay sick longer, than those with just one disease. In one telling study, Krause found some 3 percent of patients treated for early Lyme were still fatigued six months later, compared with more than a third of those coinfected with babesiosis & Lyme. No wonder I felt so ill.
Yet babesiosis can be devastating on its own. It is fatal in 5 percent of patients, especially the elderly or those with immune problems. As apparently had happened to me, untreated babesiosis can smolder, persisting for months or even years. Un-manifested B.microti creates a worst-case scenario, leaving patients with such a high parasitic load that the illness, when it arrives- & it generally does-makes them especially sick.
As I learned while navigating my way back to health, the disease we colloquially call Lyme may consist of other tick-borne infections-& may or may not involve the spirochete associated with the disease discovered in Lyme, Connecticut, in 1975. A third category of infection, referred to as ehrlichiosis, is caused by the microbes Ehrlichia chaffeensis in the South & Anaplasma phagocytophilum in the North. Infecting the white blood cells, these microbes cause fever like babesiosis, & a deep painful malaise, as is often reported in Lyme. When Lyme disease patients are treated with the antibiotic Doxycycline, ehrlichiosis is treated as well. But when doctors treat Lyme disease with Amoxicillin or a variety of other antibiotics, ehrlichiosis persists. Many an “incurable” Lyme patient has discovered the existence of a second, lurking disease-ehrlichiosis-only to be treated with Doxycycline & finally got well.
Added to the triad of Lyme-babesiosis-ehrlichiosis are other suspect pathogens inhabiting the same ticks, among them the rod-shaped bacterium Bartonella henselae & Mycoplasma fermentans, both sometimes invoked as causes of neuro-psychiatric symptoms & chronic fatigue. A host of alternate tick-borne spirochetes still under investigation will never register positive on a Lyme disease test but may cause illness as well. As long as we live in suburbs carved into woods, we’ll be in the path of the tick tornado. No one would think of trekking through Africa without prophylaxis for malaria, yet we take that rist every day by venturing, without worry, though out own backyards.
Our personal risk stayed high until we left Chappaqua in spring 2004. Thought we never got a sick as we’d been in 2000 & 2001, we continued to relapse as long as we lived in the ecosystem, requiring new rounds of antibiotics that pushed the illness back, only to relapse again. I was meticulous about avoiding exposure, yet I could never be sure whether I relapsed because I suffered the controversial chronic form of the illness or had simply been bitten again. It was only after I moved to an urban high-rise surrounded by concrete that a final round of antibiotics extinguished my illness for good in 2005. As for Jason, he regained his hard-driving intellect after aggressive treatment for Lyme disease, but for a very long time, his pain & fatigue remained. He is currently pursuing his dream as a film student at Brown University, but he paid a hefty price, sacrificing his childhood for an infection that could have been cured swiftly if it had been treated early on.
Pamela Weintraub is a consulting editor at Psychology Today & executive editor at MAMM. She is also working on a book about tick-borne disease.