Avatar universal

Why Lyme is still so underdiagnosed and mostly untracked?

The following is a reply made by a writer who is an adjunct instructor in public health at Boonshoft School of Medicine at Wright State University.

Start quote:

"I WAS glad to see the article about Lyme disease on the front page of last Sunday’s Globe (“Drawing the lines in the Lyme disease battle,” June 2).

The so-called fanatics I’ve met, including my sister and a friend, weren’t fanatics at the start of their illnesses. When nobody listened to them, few believed them, and many misdiagnosed them, their unrelenting and despairing cries for help were described as “fanaticism.” Baloney. Both eventually were successfully treated, recovered, and are now well. And they are still not fanatics.

Public health ethics teaches us to listen to patients carefully and apply basic scientific methods to the issue at hand. Why Lyme is still so underdiagnosed and mostly untracked is mind-boggling, given the energy and resources invested in tracking, diagnosing, and treating a host of other infectious diseases, including other vector-borne illnesses such as West Nile virus.

Why there is even a controversy over diagnosing and treating a bacterial infection similar to syphilis is incomprehensible in 2013."
End quote.

From the article:

"Dr. A S [the violinist], a slender Massachusetts General Hospital rheumatologist, clicked on a slide as he recounted the early days of Lyme disease, the illness that became the singular focus of his career.
Suddenly, from the back of the Boston University meeting room, a man in a blazer and scarf jumped from his seat.
“A S’s papers killed my sister!’’ T G (shouted as some 60 stunned attendees at the January dinner talk watched nervously. “She died and you have her blood on your hands.’’

"The last words T G says his 43-year-old sister uttered were aimed at the medical world that denied her antibiotics: Make them pay, she said, accompanied by an obscenity.
Grey spends much of his time trying to do so. He filmed a 2009 documentary on his sister’s death, which her doctors attributed to ALS,  “Under the Eightball"
5 Responses
Avatar universal
I haven't seen Under the Eight Ball but I may do that soon.
I'm not fond of conspiracies, in spite of what some people think, so I'll have to watch it with it with a jaundiced eye. Plum Island interests me also, even though a 'conspiracy' element is present there also.

However I do have to say that a quote from an efriend in the Netherlands always resonates with me:

"Listen to all, plucking a feather from every passing goose, but follow no one absolutely"
Avatar universal
Please consider the high levels of anxiety that many Lyme sufferers have.

Posting conspiracy theories -- even if you disclaim them -- does not help an ill person determine how to find a competent Lyme doc or to understand why there is much confusion in the medical community.

Posting alarming theories is neither kind nor productive.  
Avatar universal
You said:
"Posting alarming theories is neither kind nor productive."

There seems to be some disconnect, not to mention misunderstanding, of what my post was about. The person I wrote about (an adjunct instructor in public health) was relating her  angst about why 'we' can't get the treatment we need.

But alarming theories do get mentioned here:

BTW---- The "I" here isn't me.

"I cannot help but think of the stories of the mental asylums of old, where those with syphilitic dementia were held.  I am not medically trained, but I also wonder about the rather sudden rise of senile dementia in recent decades and whether there may be a link of some sort to the spread of Lyme.  I have read theorizing that Lyme and Alzheimer's are not related, because each affects a different type of brain structure (grey vs white matter) and thus affects memory function differently, but there may still be some connection unclear."


Mentioning the theory of there possibly being a connection between the spread of Lyme and dementia didn't scare me. I love theories. But I don't have the level of anxiety that some of the members you're protective of might just freak out when they read the words 'mental asylums' 'syphilitic dementia' and 'Lyme' in the same paragraph.

Avatar universal
Yes, and I made that post toward the end of a long and complex thread about pros and cons of testing and treatment and approach during pregnancy.

And you will note that what I wrote is not a conspiracy theory, but a discussion of the situation.  There's a difference.
Avatar universal
Oh, O.K. My mistake.
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