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Not rocephin--any other?

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Posted 4/14/2015 10:30 PM (GMT 0)
I feel worse now after 9 wks of IV rocephin. Is there some other IV med that I could ask the doc about? (I did have a few good days)



Just FYI, I have NO life except sleeping or sitting in a chair waiting to get better. When I do go out it is with trouble having energy or strength to walk to the car. And just dressing wipes me out. UGHHHHH!!!!!!!!!!!


Any thoughts?
Posted 4/14/2015 10:34 PM (GMT 0)
I don't know anything about IV meds....but is 9 weeks long enough to judge if they are working? What does your LLMD say?
Posted 4/14/2015 10:41 PM (GMT 0)
Have you asked your LLMD? I took rocephin for 6 mos before I noticed an improvement,so perhaps you might have to give it more time. However, Ask your LLMD cause there are other IV medications you might try.
Posted 4/14/2015 11:40 PM (GMT 0)
I see the doc on Thursday so I can ask him about all this.

Thanks!
Posted 4/15/2015 12:17 AM (GMT 0)
Hi Sue G, this is a long recovery process. I remember at least 6 months of limited activity. You can try the oral cephalosporins like Omnicef which are similar to rocephin possibly lower dose.
Posted 4/15/2015 4:49 AM (GMT 0)
I agree that you might need to give it more time. IV Roecephin is supposed to be very good. That is no guarantee it will work for you, but it can take so much time to get better. The changes are so subtle sometimes that you might not notice them.

Although I have not tried IV's, I think you should discuss it with your doc. You have had some good days. It is normal to still have bad days too. If it is a matter of costs for IV's, I agree that they have good oral meds in the same class. Just keep fighting! You will get there!
Posted 4/15/2015 6:24 AM (GMT 0)
I did IV clindamycin with IV rocephin and it took a few months to start feeling the benefits and stop herxing. I also pulsed some orals but I think the IV's really helped me turn the corner. I just wish I could get to the finish line:)
Posted 4/15/2015 2:21 PM (GMT 0)
Are you on any other meds, or just rocephin? Maybe try a cyst buster along with it like flagyl?

There are other IV's! Doxy, Zithromax, clindamycin, and a BUNCH of others!

I don't think that you should be on rocephin alone!

I have been emailing a girl, in her 20's, from Salt Lake City who flew to DC every month for a year to see Dr. J (theeee Dr. J). I will start a new thread with her treatment. She got better in 1 year! If nothing else, it will give you hope! Btw: Dr. J doesn't even use rocephin!
Posted 4/17/2015 1:43 AM (GMT 0)
I saw my doctor today and he increased my IV med from 2gm to 3gm of rocephin daily and gave me a tincture for babesia. He wants to meet w/ me and another lyme doctor at the same clinic to discuss my tx.
But there are no openings until July !!!




Anyway, I am taking oral abx minocycline, tinidazole and clarithro Along with the IV med. and other supplements too.
Posted 4/17/2015 9:45 AM (GMT 0)
It sounds like your LLMD has a plan in mind. I'm sorry you aren't feeling much better. I'm in the same boat.
Posted 4/17/2015 4:13 PM (GMT 0)
I am thinking that rather than wait until July, I could possibly have a phone consult w/ the other doctor from the clinic. She is much more experienced w/ LD. I just don't want to keep waiting and 3 months is crazy long to wait for another doctor appt.

Any thoughts?
Posted 4/17/2015 6:01 PM (GMT 0)
I think a phone consult is a good idea. At least you can get some ideas and get your questions answered in the meantime.
Posted 4/20/2015 1:15 AM (GMT 0)
sueg—

That is a pretty aggressive protocol. So, to get past the plateau you have the decision to go deeper because maybe you need that extra push. Or you need to lighten up a bit because you've overwhelmed your immune system and your body is having trouble keeping up, detoxing effectively, etc.

In contrast, I've had my IV port in since November—and I'm STILL at 1gram of Rocephin. I am finally pulling out of a pretty dark place and will see my LLMD Tuesday to see if we're ready to increase the dose. She also wants to add in malarone for babesia. But, I doubt she will change anything given the past month of drama I've had.

I agree with the suggestions to change something up if you're plateauing —but might take a couple of tries to figure out which way to go (increase or decrease what you're taking), bump up detox, etc.

Hope you get some answers.

-p
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