posted
Wow! I just refreshed my memory about this horrible study. The Tuskegee Experiment was so awful and yet in a strange way I feel connected to it. The IDSA drs. are denying proper, adequate treatment for people with Lyme. Is it some giant experiment that we are all secretly, without our knowledge, part of???
Maybe this is just my Lyme brain thinking wrongly, but there sure is a parallel!
Hmmm, Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
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That's interesting....I thought about those experiments too
In relation to what most of us are going through.
My neighbor (who also has Lyme) and I talk about feeling like guinea pigs.
Since there is no "proven" cure for any of us, just trying to find the right cocktail
Is a search in frustration, pain, side-effects and hope that we will find it.
My husband and I recently found out that one of the most sensitive Lyme tests was developed in
Our neck of the woods. There is a primate research
Center about 15 miles from us. Tulane University runs it....
We sometimes wonder if some of those infected monkeys passed Lyme via mosquitos and such.
I guess we will never know.
I am not usually one for conspiracy theories, but it certainly makes you go "hmmmmmmm".
Hugs,
Geneal
Ps Hopefully what we go through will help others down the road....so they won't have to do the same.
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Unfortunately racism is still producing a true Tuskegee experiment with Lyme disease. African Amercians are not diagnosed with Lyme at EVEN the rate anglo people are- and that sucks!!! *********************************************** Skin Color Can Hide Lyme Disease But late diagnosis can lead to bigger problems
By Julia McNamee Neenan HealthScout Reporter
WEDNESDAY, Oct. 18 (HealthScout) -- Blacks are about half as likely as whites to be diagnosed with Lyme disease, perhaps because their darker skin masks the telltale rash that often signals the disease, contends a new study.
As a result, blacks who do have Lyme disease are more likely to suffer from arthritis and other serious manifestations that develop later, the researchers believe.
The same likely holds true for Hispanics and other darker-skinned people, experts speculate.
Carried by deer ticks, which infect people by biting them, Lyme disease generally causes a rash, joint swelling, facial paralysis or tremors, fever and fatigue early on. Longer term, it can lead to more serious heart, blood and neurological problems.
Between 1993 and 1997, approximately 12,500 cases of Lyme disease were reported each year in the United States, according to the Centers for Disease Control and Prevention.
The bull's-eye rash that usually first identifies Lyme disease in someone "can be missed," says lead researcher Dr. Alan D. Fix, an assistant professor in the epidemiology and preventive medicine department at the University of Maryland School of Medicine. "It can certainly be ignored. But some later manifestations cannot. If you have a big, swollen knee, you're going to seek help."
Whites long have shown higher rates of Lyme disease infection than blacks, Fix says, but researchers have explained the difference with demographics, believing that blacks were less likely to become infected because they generally live in areas where few deer ticks are found.
"It has been attributed to the area of residence," Fix says, paraphrasing the logic. "[People thought] this is a disease of the suburbs."
To test that theory, Fix chose to study a rural area in Maryland with a relatively high incidence of Lyme disease and a black population of about 13 percent -- the state's upper Eastern Shore. Logically, he says, you should not see much difference in the diagnosis of the disease between whites and blacks in this area because both groups would have roughly equal contact with infected ticks in daily activities near their homes.
Instead, he found that whites were 1.8 times as likely as blacks to be diagnosed with the disease -- 42 whites for every 100,000 people, compared with 23.4 blacks.
And of those eventually diagnosed with the disease, whites were 5.7 times as likely to have detected a bull's-eye rash, the study says.
When blacks who contracted the disease finally were diagnosed with it, it was at a later stage of the disease, after other symptoms appeared, Fix says. Blacks were 10 percent more likely to exhibit symptoms like neurological or heart problems and 30 percent more likely to suffer from arthritis, he says. Findings appear in the current issue of the American Journal of Epidemiology.
"The question is why," Fix says, adding that the only answers at this point are speculation. "Is it because individuals aren't recognizing it? Or that if they see it, they're not thinking much of it?"
Other possibilities, he says, may be that blacks simply do not have health-care coverage that would allow for earlier diagnosis or that health-care professionals may have interpreted previous statistics to mean that Lyme disease is not a cause for common concern with black patients.
David Weld, executive director of the American Lyme Disease Foundation, says the evidence suggests more education is needed. In the black population, he agrees, Lyme disease "is underdiagnosed and underreported."
But the same problem exists in the Hispanic population, Weld says, because many Hispanics also are darker-skinned, making it harder to spot the rash. That, in turn, is compounded in the migrant worker population, which may have even less access to medical care and also an aversion to government clinics, given that many of the workers are illegal immigrants, Weld says.
Both Fix and Weld say there's some evidence that delayed treatment of Lyme disease may lead to more problems in the long run. So, they say, failure to diagnose early could mean greater damage for blacks.
Because the disease-bearing ticks often are as small as poppy seeds, making them extremely difficult to detect, the rash is your best bet at a clear diagnosis, Weld says. He estimates that it appears in 80 percent to 90 percent of Lyme disease cases.
"It's a diagnostic tool that's infallible," Weld says.
What To Do
For more information about Lyme disease, including pictures of ticks, visit the Centers for Disease Control and Prevention and the American Lyme Disease Foundation online.
Or, you may want to read previous HealthScout articles on Lyme disease.
SOURCES: Interviews with Alan D. Fix, M.D., assistant professor, department of epidemiology and preventive medicine, University of Maryland School of Medicine, Baltimore; and David Weld, executive director, American Lyme Disease Foundation, Somers, N.Y.; Oct. 15, 2000 American Journal of Epidemiology
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I think that is just awful: both about blacks & about the research centers & monkeys raised near the ranch.
We need much better testing than what we currently have. Oh, how I pray for a breakthrough that comes quickly!
I've hard of the book Lab 257 and read an excerpt here and there. It's too frightening to read it altogether. And, it filled me with anxiety which hindered my healing. I do not know if it's true or not. If it is, then it kind of answers a lot of unaswerable questions, doesn't it?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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hopeful123
Frequent Contributor (1K+ posts)
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posted
in addition to the tuskegee experience, which was hideous, the government also used civilians to test all kinds of drugs during the cold war. lsd and other drugs were given to children in and out of institutions, the developmentally disabled in institutions, to mention a few.
this was supposedly done to help us fight the cold war and was backed by major institutions and the psychological field WITH gov. funds.
nothing would surprise me.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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