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Re: False and Misleading Information about Lyme Disease.

Posted: Thu 2 Mar 2017 17:30
by duncan
Henry, you make me smile, and I will explain why.

First, yes, you are absolutely correct in pointing out my little case is anecdotal as well, and all the associated limitations apply.

The reason I smile is your use of the word "unique". I was literally told by the NIH that this case I described was NOT "unique" - their word exactly.

Re: False and Misleading Information about Lyme Disease.

Posted: Thu 2 Mar 2017 17:46
by Henry
Duncan, Duncan, Duncan. Not unique? How many patients do you know that were not tested and treated for at least 6 years or more after exposure to tick bite, especially in an endemic area? Hardly a common occurrence I would imagine. Still, the "evidence" you present is circumstantial. You have a way to go before establishing a valid cause and effect relationship.

Re: False and Misleading Information about Lyme Disease.

Posted: Thu 2 Mar 2017 17:52
by duncan
It is the same evidence any respectable IDSA man or woman would request in order to make a diagnosis of a Lyme infection, and be willing to report it as such to the appropriate state agency.

And yes, not unique, at least according to the NIH.

Re: False and Misleading Information about Lyme Disease.

Posted: Thu 2 Mar 2017 19:38
by Henry
Did you consult a malpractice attorney?

Re: False and Misleading Information about Lyme Disease.

Posted: Thu 2 Mar 2017 19:45
by Henry
Sounds like you had an extensive examination and consultation at the NIH. If they were unable to cure your "Lyme disease", far be it from me to suggest any solutions. Did they suggest other possibilities?

Re: False and Misleading Information about Lyme Disease.

Posted: Thu 2 Mar 2017 21:24
by duncan
Oh, it wasn't the doctor's fault. I wouldn't sue anybody anyway. Mistakes happen. It is shitty to be on the wrong end, but I don't believe this clinic deliberately made a bad call out of meanness of spirit. They just made a bad call.

The NIH was kinda cautious, if I can use that word. And they didn't treat me; I'd already had two weeks of doxy years earlier before I worked my way over to Bethesda. They tried to figure out which of my titers were high (through several labs), and why, and what kind of damage I might have had that was attributable to Lyme. But for me there was always the feeling of politics at play, although maybe that is unfair. After reviewing my tests, they did concede I could still be infected, but they would not go so far as to declare it. As for other possibilities, I don't recall. It is ancient history now.

And they did say my case was not unique.

Re: False and Misleading Information about Lyme Disease.

Posted: Thu 2 Mar 2017 22:34
by nnecker
I went to a hole in the wall rural clinic that was staffed with bottom of the barrel doctors.I showed the Dr where I pulled the tick off of me and told him I didn't feel right.
He said no problem, here is a 28 day doxy prescription .I have been fine ever since.(five years)

Re: False and Misleading Information about Lyme Disease.

Posted: Fri 3 Mar 2017 15:45
by Henry
Duncan, although you state that they -- the NIH-- indicated that your case was not unique, that does not imply that it is a common occurrence. It may occur in only a small percentage (<1%?) of patients under the circumstances that you describe. Also, although EM is considered to be diagnostic for Lyme disease in an endemic area where the risk of Lyme disease is significant, other things that can cause EM or a rash that resembles EM (see: http://www.disease-treatment.com/showthread.php?t=73461 ). If you have been treated with antibiotics, it is possible that your Lyme disease has been cured and your symptoms are due to other, unrelated causes. That certainly is a very real possibility, since you are unable to prove that you now are actively infected with B. burgdorferi, the causative agent of Lyme disease.

Re: False and Misleading Information about Lyme Disease.

Posted: Fri 3 Mar 2017 15:54
by duncan
"...since you are unable to prove that you now are actively infected..."

Then you might as well throw out 99.99% of all of the Lyme diagnoses that have been formally reported as Lyme each and every year since the inception of the 2T as a diagnostic tool, and reported as such to their respective state health depts. Ditto for the C6.

Because unless those patients were diagnosed via culture - freakishly rare outside of an EM biopsy - then by your logic all of those diagnoses are without merit.

You and the IDSA cannot have it both ways. Of course, insurance companies are fond of this sort of rationale.

Re: False and Misleading Information about Lyme Disease.

Posted: Fri 3 Mar 2017 17:48
by nnecker
duncan said:
Then you might as well throw out 99.99% of all of the Lyme diagnoses that have been formally reported as Lyme each and every year since the inception of the 2T as a diagnostic tool
They were reported before treatment, not after.You can't prove that you have an active infection duncan,period,end of story,nothing more to be said about it,done.Until you can, you don't know.