The meaning of cure is relative. For the patient, remaining symptoms can be disabling and life-draining. For the scientist parsing the data, such symptoms can be dismissed --as somatic, psychiatric, incurable, irrelevant to the illness at the start. It's amazing how that happens --how a researcher's methodology can erase a patients' disease.
please go to my link above and read my broken up version of pam's well-done article!! Take the time and share your thoughts w/pam and others on there too. So easy to do!
Submitted by BettyG, Iowa lyme activist on February 14, 2009 - 1:36am.
Pam, you've done it again .. outstanding!!
"Some experts insist that studies show that the patients are somatisizing, imagining the problems and making mountains out of molehills.
Other experts say the studies show the patients are deeply, disturbingly ill.
These are the same studies, yet some researchers say they prove Lyme is always curable, no matter how sick patients were before treatment commenced."
We chronic lyme/co-infection patients HATE the word "somatisizing", imagining the problems and making mountains out of molehills.
That word has been used against us lyme patients during the SSDI, Social Security Disability Insurance, benefits claim process over and over!
If EACH OF YOU READING THIS could step into our shoes for 30 days during our worst herx/flare-ups, etc; your opinion of chronic lyme/co-infections would be changed for your LIFETIME!
What we suffer from is REAL; the pain is 24/7, and so miserable to content with plus the other body parts/symptoms!
MDs can't figure out what we have since they only spend 10 minutes tops with us so label us,
"IT'S ALL IN YOUR HEAD"! HOG WASH! What a cop out.
Halperin's comments to Pam,
"As to the Lyme encephalopathy that chronic patients described as so disabling, Halperin said the label was a misnomer. ***********************
"Those with true Lyme encephalopathy suffer infection and inflammation and respond to antibiotic therapy," he said.
"Months after therapy, when the inflammation goes down, they are cured." ***********
And what of those who continued to suffer?
Whatever was bothering these patients, Halperin opined, it was probably "unrelated to active Lyme infection. " *********** *********** HOG WASH!
Majority of us are NOT cured; and it IS RELATED to our active LYME infection!
"I tell him John Halperin has estimated that just one in 1000 Lyme disease patients suffer gross encephalomyeltis -- obvious inflammation of the brain -- and Jones tosses out a figure of his own:
Such patients comprise easily 60 percent of his practice, he says."
Halperin and others need to talk and treat more chronic lyme and co-infection patients. Their opinions on us would change after observing us and working with us mentally.
Halperin's 1 in 1,000 have suffer gross encephalomyeltis; I so disagree with this based upon the hundreds of people I talk to online on a lyme discussion board.
Pam, thank you for telling it like it is; we appreciate your educating the psychiatrists nationwide and around the world!! Well done!
BettyG, Iowa lyme activist
Posted by FancyRatFan (Member # 3088) on :
Thank you Betty for doing that. It's very helpfull.
Great article Pamela!!!!
Fancy
Posted by seekhelp (Member # 15067) on :
Very good and on point article.
Posted by bettyg (Member # 6147) on :
fancy, thank you so much; i went and looked to read YOUR comments there. Shucks; i'm all alone there and getting LONELY!
COME AND POST PLEASE keeping pam's article up in top 5 articles being read on that site xox
Posted by Dekrator48 (Member # 18239) on :
Great article Pam!!!
Thanks so much for keeping the truth out in the open for others to see and read!
Posted by METALLlC BLUE (Member # 6628) on :
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