I've been on Rocephin for almost 4 weeks. I get a couple of hives with each dose (my doc knows about this) and had controlled things with Quercetin, etc until today...
Now there is a rash on my torso and extending to my back. I think it's officially time to consider switching to a different anti-b!
Disappointed about this but trying to stay positive. I'm supposed to add IV Zithro next week and Rifampin in a few weeks later...
Trying to figure out an alternative to Rocephin that would still work with the Zith/Rifampin combo.
My LLMD is really wonderful. So far he's been willing to work with me on things he gives me lots of options. I'd like to have some ideas of my own when we talk tomorrow!
Any advice would be truly appreciated. Thank you very much!
Leigh
Posted by trigal2 (Member # 20578) on :
I had IV Doxy after having an immediate allergic reaction to Rochephin.
This was back in 2005 and I had mostly Neuro. Lyme symptoms. Did seem to help some but I had to stop tx early due to PICC line infection. Has the line in for about 6 weeks.
I had 2 months of Zythro. prior to the IV Doxy.
Years later and tick bites later I am on oral Biaxin and getting much better then I did on Doxy.
Everyone is so different. I know alot of people do just great on Doxy and others better on other abx.
What has your experience been with oral doxy? TG
Posted by pas (Member # 22416) on :
Hi TG and thanks for replying! I really appreciate it. Sounds like maybe we're in similiar boats...
I can't tolerate oral meds because of atrophic gastritis. I actually started on oral Doxy a few months ago just to see if it would work, but had vomiting and then stopped being able to absorb my other prescription meds because of inflammation.
I never would have been able to take enough Doxy to cross the BBB, which is why we went to the Rocephin. But the symptoms that bother me most are actually not the neuro ones...although of course I'd rather not have those either!
I have to say that despite the yuckiness, I did feel a little better on the Doxy than I have on the Rocephin. My doc said he thought it was probably just the anti-inflammatory effects of it, though, and not the anti-bacterial ones (since I never had a herx on it). I don't know.
My PICC isn't looking so hot according to the nurse that came today. Hmph. I had a bad experience with the placement and don't want to go through that again...but I don't think oral meds are an option for me.
So do you think oral meds work as well as IV for you? Did you go on IV Doxy mostly because of the neuro symptoms? What was your dose?
Thanks again! Leigh
Posted by trigal2 (Member # 20578) on :
Your welcome!
For me I would have to say yes, that the oral abx's seem to help as much as the IV. I am having very good sucess with oral Biaxin. This is my first time on this abx. Still have a way to go but I see some light...
I really do not think I had the IV Doxy long enough to see if it helped in the long term. The hospital pulled it and I never got it put back in - too scared after the experience.
Yes, did the IV Doxy for Neuro. My lungs closed up within minutes of my first dose of Rocehpin and my then LLMD thought the next best thing for my Neuro symptoms was the DOxy.
As far as my dose..gosh..I really do not remember. I just know it was one of those big round balls Doxy that I would keep in the freezer.
I too had a bad experience with the placement of my PICC line....would never want to go through that again.
Be very careful with your line. Before I got really sick from my PICC line infection I would notice feeling kinda sick and feverish right after I would flush the line - then in a few hours it would go away.
After a few days of that is when the big BANG happened. Flushed the line the within minutes I got the rigors soooo bad it felt like an atomic bomb went off inside of me and my temp. spiked to 103....I went right to the ER and they did a culture and found bacteria in the line that I was flushing into my system everytime I flushed.
The visiting nurse missed two cleaning visits and that is why/how it got infected..
Just be very very careful with it!!!
I hope you have sucess with your tx! TG
Posted by Skyler (Member # 11549) on :
I did the IV Doxy. Just finished up my 8 week treatment with it.
I found that it helped me and I did not notice any side effects.
Only down side, you have to infuse twice a day from an IV bag that must be hung up. In the past, I was use to infusion twice a day but with one of those ball IVs where you don't have to hang them up and have gravity do the job. I could just throw it into my purse if I had to go to a doctor's apt or something.
So If that is not too much of a life change for you, its a good drug and I recommend it.
Posted by pas (Member # 22416) on :
Thank you both very much. You have no idea how much it helps me to hear your experiences!
Looks like we are definitely switching to Doxy. Just have to make sure there aren't any hang-ups with insurance, since it's so much more expensive than Rocephin...
I'm excited to try it. The Rocephin (aside from giving me allergic symptoms) makes me cranky. Actually, it's just like when I got Penicillin as a little kid...no wonder.
TG, I'm so sorry to hear about your PICC experience. That sounds horrible. My PICC site is red so the nurse put a biopatch on it and called my doc. They're being careful and monitoring me. So far no warmth/swelling.
I have immunodeficiency and don't respond to infection in a normal way (no fever, no rise in WBCs, etc). Also have Addison's, so if I do get sick things get really bad really fast! But something tells me I'm o.k. right now.
That said, I will take what you said to heart. I am fortunate to have a great home nurse now. I asked for a new one once the first one stopped showing up - sounds similiar to what you went through.
Skyler, thanks for the heads-up about the gravity IV. I think that sounds like the way Rocephin is, so not too much of a change from the way things are. May I ask what made you go for the Doxy? How long ago did you stop?
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