I was reading about the Borrelia culture test provided by Advanced Laboratories Inc. It seems it's been available since early November. Shouldn't this be huge news? Why isn't the CDC all over this, running a study to compare culture results with blood tests of people who insist they have Lyme but don't test positive? And why isn't the IDSA running a study to do this culture on all their "post Lyme syndrome" patients who are still sick? If they believe they're right and their patients are all cured of Lyme, they should welcome the challenge.
Shouldn't a commercially available test like this resolve the disagreements over testing interpretation and persistent infection once and for all? Who do I email to complain about this?
I agree with you. We are like the step children.
My good friend who is an RN, was in Vietnam and came back and worked for the CDC and NIH, told me this story.... She worked there when AIDS was just coming around and lots of people were dying. They had information that could have been used but people were dying needlessly before the "higher ups" decided to just do something about some of the test results. She says that is how Chronic Lyme is now. The big'' G' probably has more info but this illness, as we know is tricky and takes a long time to cure and most doctors dont want to put in the energy or money it takes to cure it or even be involved with it.
My friend now is a licensed Professional Counselor, that rents space from her LLMD for 99% of her patients are Lyme Patients as well.
"The big ''G' probably has more info" - yeah, but they (the government, and the CDC) don't know what to do with it because they are prisoners of the status quo.
I don't see a conspiracy, but instead the human tendency not to be one to stand up and say, as the little boy did in 'The Emperor's New Clothes' that the emperor is quite naked. Medical history is full of similar stories, like those who didn't believe that a doc's dirty hands could transfer infection from one patient to another -- Lister ('Listerine' is named after him) and Semmelweis showed differently); and those who didn't understand about germs and infection -- Pasteur ('pasteurisation' or heating of milk to kill germs) and Jenner (who created vaccinations) fixed that.
It takes time for docs and scientists to revisit their assumptions, and we are in that period now with Lyme.
Incidentally, Lister died a hundred years ago this year ... 1912. So none of this is truly ancient history.
It just s*cks for all of us to be on the front lines of medicine. The LLMDs don't have all the answers (yet), but at least they are asking the questions.
Those who have built careers on being Lyme-deniers aren't likely to stand down from that, because they are sadly only human. I so look forward to the day when the IDSA strikes its flag and gives in. I do wonder how much the upswing in Alzheimers and dementia is related to Lyme and similar underappreciated infections. Hmmm.
Tally ho! Be strong! We're not being persecuted, just mistreated. This too shall pass.
Your posts reminded me of a story in Pamela Weintraub's "Cure Unknown.". She describes a woman who is dying of Lyme Disease and her doctor is fighting her insurance company every step of the way to keep her on Rocephin. She ends up on Medicare and he lost his fight to keep her on Rocephin. When she dies, the doctors are too scared of her disease to do an autopsy. They had to ship her body out to a doc who would. Her brain was loaded with Lyme, and multiple samples were sent to the CDC. They said they had never seen anything like it. The story ended with the author saying that the CDC was "still studying" this woman's brain. So, the CDC has known for a fact that the infection can persist after many months of IV abx, and also that Lyme can kill. The book was published in '08.
... and to cast not too gloomy a light on this thread, I suspect many people live with untreated Lyme at a low level, because their immune systems keeps the infection suppressed (I think that is how I was for a few years), and many others are treated and get well, and a very few actually die from the infection.
I know how physically and emotionally fragile I was when I first came to this website, all due to the effects of the infection, and the emotional burden made worse by ignorant docs not diagnosing/treating me.
Please, anyone reading this, do not be afraid of plowing ahead in whatever way you decide to pursue treatment. There are many horror stories out there, and it's good to be able to come here and share what we've been through and are going through.
We slip into critique of mainstream medicine, which would have scared me terribly when I was so fragile, but please try not to let that critique frighten you. Try to take it as knowing that there are many good docs fighting the good fight, and progress is being made every day.
The horror stories you read here will not necessarily happen to you, and treatment IS effective -- it's just a matter of finding the right doc and hanging on.
Sorry!! I didn't mean to post scary stuff. After seeing some people in my doctor's waiting room who were quite sick, I was angry. And there are scary stories about any aspect of life. As I get frustrated, I have to remind myself that this is curable and it won't last forever!! :)
In reality, most people who get Lyme are caught early when they see a tick or a rash. And the overwhelming majority who develop more advanced symptoms are treated successfully. My heart goes out to the ones who slip through the cracks and get sick enough to seriously disrupt their lives. I am so grateful for the doctors who will treat us until we're well!
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