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» LymeNet Flash » Questions and Discussion » Medical Questions » help with PICC and rocephin

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Author Topic: help with PICC and rocephin
Junior Member
Member # 17649

Icon 9 posted      Profile for nicole2178     Send New Private Message       Edit/Delete Post   Reply With Quote 
Ok,I have a neurologist, LLMD, PCP who is lyme literate, and psychologist. I've been on oral meds for 7 months (mepron, zithromax, biaxin, plaquinel, omnicef, doxy in 2008 and 2009). my swelling is out of control, worse with treatment and so is the pain. I'm 32 but feel like I'm 92. Yes, I know about herxing, I've been fighting this of and on since 2008, susupected infection is 20+ years but 7 months of constant herx reaction? All my doctors are on board with IV but no one is moving and I'm running out of time.

I've heard so many people get IV treatment and I don't know anyone that's had as many problems as I have moving the process along, and in my area, I've never heard this supposed hero neurologist mentioned with any IV treatment cases. It's been 3 months since my neuro tests showed LD is in my nervous system. I'm getting worse every day; LLMD in NY says the neurologist has to order the PICC and Rocephin, but there have to be others out there that haven't had to deal with this neurologist.

Posts: 9 | From Northern MA near NH border | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 19490

Icon 1 posted      Profile for momofthree     Send New Private Message       Edit/Delete Post   Reply With Quote 
I don't know anything about your neurologist or doctors personally. I do know that I was on oral meds for over 6 months and I was only getting worse by the day. My llmd in NY order a picc line for me, then my pcp in WI ordered it locally for me here. It took 4 months but the IV Rocephin started to work.

It was really scary at first but now, a year later, I have gotten really comfortable with it. I have never had a problem and have only seen improvement.

If your PCP is lyme friendly then have the LLMD in NY write the order and bring it into your PCP. Your PCP can take the order and set it up for you locally.

Here in WI we have some trouble with docs wanting to order picc lines but I swear they are the most efficient method of dealing with this disease when oral meds don't seem to work.

My daughter was put on a picc line for 7 months and it has been amazing how well she is now compared to before.

Good Luck!!

Posts: 303 | From green bay, wi | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693

Icon 1 posted      Profile for Dawn in VA     Send New Private Message       Edit/Delete Post   Reply With Quote 
That sounds ridiculous.

Any idea why your LLMD can't order the PICC and meds him/herself? Is there some legal mandate about this must-be-from-a-neuro in NY or is he just leery of doing it himself?

momofthree shared a good idea. I hope it works.

(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
cht girl
LymeNet Contributor
Member # 26170

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I was seeing one of the best LLMD in MO, he told me I should probably consider IV antibiotics as well, but would also not write the order for it, only a note to take back to my PCP to get him to write the order. If my PCP would have written the order for IV therapy, I don't think I would have traveled to Missouri in the first place!
Posts: 143 | From Louisville KY | Registered: May 2010  |  IP: Logged | Report this post to a Moderator

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