LymeNet Flash: Untreated

This is topic Untreated in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/87607

Posted by tiptoe (Member # 23060) on :

Ok, i am waiting for an appointment for a Lyme Specialist on Dec. 21.

here is the thing...the dr who told me i didnt have LD i had Lyme Exposure put me on 3 weeks of antibiotic. That was about 2 months ago.

i have been slowly but steadily getting issues again.

today is really bad with subtle involuntary jerking. i even feel a very, very slight twitch on my face - altho it happened only a couple times.

my hands are tremoring so bad it is obnoxious.

It is making me a little worried. Is it ok to be untreated until my appointment in december?

i dont know what to do. my primary doesnt say much about it. the rheummy who dx didnt respond to my call.

do i ask for antibiotics from my primary if i have no idea anything about Lyme or treatment of it?

Posted by dmc (Member # 5102) on :

up for imput

Posted by 22dreams (Member # 17846) on :

Hi tiptoe,

Obviously, the infection is persisting as evidenced by the symptoms.

"Lyme Exposure"? did you walk in with the tick or something?

How do you go about getting your PCP prescribe antibiotics?

Maybe someone in NJ can point you to a new PCP--a lyme-friendly one.....?

That w/b easiest.

In lieu of that:

I'd suggest that you ask your primary for a Rx until you get to see a LLMD.

Here is journal article about the need for clinical diagnosis in lyme.

www.jpands.org/vol14no3/maloney.pdf

Meaning, not reliant on using inferior, inaccurate tests as a means of diagnosis.

If you are tested again and come up negative, it doesn't mean that the infection isn't there; or

that after 3 wks of treatment a positive is a false positive.

This Webcast holds a lot of information on the 2 recommendations for standard of care (ILADS vs. IDSA):

http://www.idsociety.org/Content.aspx?id=15026

To quote from the transcript of Dr. S in there, regarding standard Testing:

"The two tier testing system endorsed by the centers for disease control has a high specificity 99 percent and yields few false positives

but the test have a uniformly miserable sensitivity 56 percent....

sensitivity is far below the 95 percent cutoff required for an accurate diagnostic test and much worse than the 99.5 percent sensitivity of commercial HIV testing..."

Others can add....

Posted by 22dreams (Member # 17846) on :

This is a good piece about the two standards of care:

www.lymemed.nl/discussie/johnson.pdf

some highlights:

*Patient preference exists whenever there is more than one acceptable treatment approach.

Hence, the American Medical Association requires that the physician disclose and discuss with the patient not only the risks and benefits of the

proposed treatment, but also the risks and benefits of available alternative treatments.

*The legal doctrine of informed consent also requires that patients be advised of material treatment options.

Treatment choices involve trade-offs between the risks and benefits of treatment options that

only patients-who know the kinds of risks they are willing to run and the types of quality of
life outcomes that matter to them-are uniquely suited to make.

*Respect for the basic autonomy of the patient is a fundamental principle of medical ethics.

Without adequate information about treatment options, their probable outcomes, and the risks and benefits associated with each, patients cannot act autonomously.

Posted by Lymetoo (Member # 743) on :

Great job, 22 dreams!

Posted by Keebler (Member # 12673) on :

-
This thread list some actions to consider while you wait for your appointment. You can call the LLMD whom you plan to see and ask their advice after you find something here that resonates with you:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/87649
-