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10/17/2009 12:59 PM

rocephin

dollsie
dollsiePosts: 312
Member

Hi,

I was just diagnosed and will require IV antibiotics. I've been calling around to different LLMDs in my state. The only one who will see me relatively soon uses Rocephin IV and nothing else.

I tested strongly positive for both IgM and IgG on WB, and also positive for E. Chaffeensis (HME) by titer. My GP thinks I also have Bartonella. I had planned on receiving IV Doxy (and probably something else).

So I don't know what to do - wait a long time to see someone who will prescribe Doxy, or go see the doc that uses Rocephin. Any thoughts?

Should I be on oral antibiotics while I wait? Does anyone here have experience (good or bad) with Rocephin?'

Thanks in advance!

Leigh

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10/17/2009 01:19 PM
sickdaughter
Posts: 4
New Member

I say good luck on trying to find a dr. that will put an IV in. I have been looking for a dr. for about 6 monthes and can't find anyone who will put an IV in. My daughter is on oral antibiotics but they only work for a couple of days then we have to switch. She has even had the shots but they did not work.

Good luck.


10/17/2009 08:09 PM
apstarlet
apstarlet  
Posts: 120
Member

I have a question for those who are on IV, how does that work? Do you get bags of iv abx from the the pharmacy and hook them up to your port, etc yourself, or does a nurse or CNA come to your house, do you go the hospital, or? Also how long does each drip take? I am looking at both me and my husband going on Rocephin via IV very soon and we can't get any answers on how to work out the daily details...I am thinking the LLMD will do 2mg, he mentioned that at last md visit....

10/17/2009 09:04 PM
decembergal
decembergal  
Posts: 181
Member

My husband is on IV anti-biotics. He gets a shipment each week hand delivered. There is a company called synergy that takes care of it. They also have a nurse come to the house or his work to change out his dressing and take blood tests. The nurse comes once a week.

He sees his doctor once a month. His treatment is IV anti-biotics 4 days a week and oral anti-biotics on the weekends. He is also taking Flagyl. He has been on this for 4 months so far and is doing much better. The doctor plans on him doing this for a year if he continues to tolerate it. He is also taking vitamins, coQ10 etc.


10/18/2009 06:32 PM
sickdaughter
Posts: 4
New Member

do you live in the missouri or Illinois area, maybe the doctor could do this for us. I can't find a doctor to put a pick line in and that is what she is needing because the orals are not doing anything and the shots did nothing. We have also went to childrens Hospital Infection Disease and he said the shots should have done the job but they didn't and said she has lupus even though she has been diagnosed with Masters disease(a disease from a tick). If you have any information I am will to travel anywhere to get this done.

Thank you for your help

TammySad


10/18/2009 06:55 PM
decembergal
decembergal  
Posts: 181
Member

I live in Maryland. If you private message Christine or one of the other leaders on here they may be able to give you the name of a doctor in your area. I don't know how a doctor would work an out of state case.

I do know that my husband is on travel and synergy even managed to get his medicine delivered to the hotel he is staying at.

Sorry I couldn't be of more help.

Kathy


10/19/2009 05:06 PM
dollsie
dollsiePosts: 312
Member

Apstarlet, may I ask what made you decide on Rocephin instead of other abx? I'm nervous about it because I have a history of gallbladder problems, pancreatitis, and several other GI issues (I read that it causes biliary sludging). What do you think?

Decembergal, is your husband on IV Rocephin? Did your doc talk about what to expect coming off of it? I've read conflicting things...seems like it's a whopper of a drug, pretty good at treating neurologic problems, some people do really well on it - but others have trouble with flares once they stop treatment. I'm not sure what to believe. Wondering if your doc had shed any light on that?

Thank you,

Leigh


10/19/2009 07:00 PM
abster33
abster33  
Posts: 136
Member

I have been on IV rocephin for 2 months and have had no change in my neurological problems. I didn't have any herxes or any bad side affects. So I really don't know what to think anymore.

10/19/2009 07:26 PM
dollsie
dollsiePosts: 312
Member

Hi Abby,

I'm really sorry to hear about this, and can certainly understand your frustration. It seems like certain antibiotics work better for different people. I'm no expert on this stuff, but maybe it would be worth trying a different med? What does your doc say?

I read through one of your other posts and saw that you might have Bartonella. Me too. I read that this requires another antibiotic (Levofloxacin maybe?). Can this be used along with Rocephin?

What is your dose of Rocephin? I've read that it's a good drug for neuro problems, which I have, but bad for biliary problems, which I also have! Kind of stuck.

Thanks for writing,

Leigh

Post edited by: dollsie, at: 10/19/2009 07:28 PM

Post edited by: dollsie, at: 10/19/2009 07:31 PM


10/19/2009 07:54 PM
apstarlet
apstarlet  
Posts: 120
Member

HI! Well, I haven't really chosen that abx, I figured that is what the MD wanted to try. I am on Biaxin, Omnicef, Nystatin, and Alinia, and that combo is killing my stomach, I can only tolerate it for a couple of days, and then I have to switch to Amoxy 875 mg 3x day, its easier on the gut. I do feel TONS better on this cocktail, and I don't want to do IV if not needed, but I definitely have neuro sx, so can it be treated with out going that route? My Md never rx Doxy for anyone in my family, is that weird??
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