LymeNet Flash: Important question about PCP and long distance care

This is topic Important question about PCP and long distance care in forum Medical Questions at LymeNet Flash.

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Posted by supergirl (Member # 26936) on :

For folks doing across the miles care, do you have a pcp that carries out the protocol of your lyme doc? Please share.

First, my pcp said she would absolutely follow my new doc's protocol, and now, she's saying that she won't because it goes against the AMA guidelines. I'm relying on her for Bicillin IM - I can't give the IM to myself.

After 2 1/2 months of treatment with this new protocol, I am almost normal! 10 days of normal brain function. I can't even begin to express how distressed and devastated I feel imagining having my treatment taken away. There is no way I can go back to being sick...

She says it's a risk to follow his treatment because this is not her specialty...but it's certain if she doesn't, my life would be in great danger and I would for sure suffer...you tell me where the risk is?

Posted by Tincup (Member # 5829) on :

So nice to hear you are doing better! Too bad your doc doesn't seem to be able to get on board with that concept.

First of all...

It is not the AMA guidelines, it is the IDSA Guidelines.

Second, the IDSA Guideline authors were found by the Attorney General to be... well.... they say it so well, so here is the quote from the Attorney General after concluding his investigation.

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

You could also share with her the following guidelines that do allow for something other than the 2-3 weeks of doxycycline.

http://www.lymenet.org/BurrGuide200810.pdf

It states....

"BENZATHINE PENICILLIN Comparative studies published by Fallon et. al. at Columbia University have shown
that parenteral therapy is superior to oral therapy in chronic patients. Options include intramuscular long acting penicillin G (benzathine penicillin, or �Bicillin-LA�) or intravenous antibiotics."

And...

"For an antibiotic in the penicillin class to be effective, time-killing curves show that significant levels of antibiotic must be sustained for 72 hours. Bicillin LA is a sustained release formulation that meets these criteria."

You can also try these guidelines:

http://www.ilads.org/files/ILADS_Guidelines.pdf

Hope this helps some!

[Big Grin]

BTW- If it doesn't, you might want to go by the local Dew Drop Inn or Doc in a Box and ask if they will do your injections for you.

Posted by BoxerMom (Member # 25251) on :

Are you saying she won't prescribe or won't administer? Can you find someone who would administer the shots for you?

If she won't prescribe, post in Seeking for a Lyme-sympathetic PCP. Or one who is more willing to write scripts. They are out there.

Don't give up, but don't freak out, either. We all run into roadblocks. You will find a way to continue the treatment that is working!!

And woo-hoo on your improvement!

[woohoo]

Posted by supergirl (Member # 26936) on :

Thanks Tincup...you are always such a wealth of info...
Boxermom...I don't know exactly what she will do or not do right now...she's just acting like she's gonna split to cya...she didn't want to sign off on the meds and I receive my bicillin im at her office from the nurse...

Cost is an issue..but, I'm sure Dr. H could adjust protocol so that I'm not taking all of the expensive meds at one time...but instead treat different infections at different times so I can afford it

Thanks for reminding me to not freak out..I appreciate it!
hey, btw, does boxer mom mean a "boxer" dog breed? I have a gorgeous 1 yr old australian shepherd who I love so much!

Posted by sutherngrl (Member # 16270) on :

I get all my lyme treatment straight from LLMD, 3 hours away. PCP does not do anything in the way of lyme treatment. Can't your LLMD administer all your meds to you? Maybe you can learn to give your own shots, or maybe you don't need the shots and can just treat with orals.