My son just started Rocephin and is taking 1g Monday through Thursday. He tolerated Rocephin well and had no herxing. However today, Saturday, he is complaining of headaches, sweating, and tiredness. Is this typical to feel worse on the days off the Rocephin? Thanks for sharing any experiences:)
Posts: 34 | From California | Registered: Mar 2011
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beaches
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posted
Well he could still be herxing IMO. BTW 1G is a very low dose of rocephin.
Do a search here to see how to help someone who is herxing...lemon water is one of the easiest ways.
Seems as though your LLMD is pulsing the rocephin and starting your son on a low dose to see how he tolerates it.
Usually (well at least from what I've read) people are started on 2G rocephin and sometimes end up on 4G. My kids did really, really well on 2G and later 4G rocephin pulsed with IV zith 500mg. This, along with tindamax, pulsed 2 weeks on/2 weeks off, got them to a new level of functioning.
Has your son been evaluated/treated for coinfections? Is he on a GF diet/clean diet in general?
To answer your original question (sorry for going off on tangents lol), who knows what is "typical" ? Your son could just be sensitive to meds and you might have to take things very slowly, and that's not a bad thing.
Posts: 1885 | From here | Registered: Jul 2012
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Thanks for the response. My son is 60lbs but it sounds like 1g may still be a low dose. He was doing fabulous on oral doxycycline but we switched to Mino in May because of sun burning. We discontinued the Mino last week bc his WBC and neutrophil were trending too low. We are supposed to add Azith next week if his labs look good. Then pulse Tindamx. I guess I was just expecting the harder days to be while on the Rocephin but I realize there is a "typical" - just hoping it would be simple but know it's not:)
Posts: 34 | From California | Registered: Mar 2011
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beaches
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How old is your son that he is 60 lbs?
Yeah, doxy and mino during the summertime aren't necessarily the best abx due to the sun, not to mention that if his WBCs and neutrophils were on the low side, it's probably best to d/c this class of abx.
Sounds like you have a good LLMD. The fact that s/he's waiting to see if your son's labs are good enough to start the zith is a good thing.
And the fact that tindamax is in the mix is good too. I have learned the hard way that it's best to proceed slowly when adding meds and supps.
Slow and steady wins the race Posts: 1885 | From here | Registered: Jul 2012
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Thanks again for replying. My son is 9 years old but we have been fighting this battle for many years. Doxy was the first antibiotic to help and I wish we didn't wait so long bc of potential teeth stains! Thanks again for your feedback!
Posts: 34 | From California | Registered: Mar 2011
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Rocephin is excellent. Still the gold standard in my book (fighting Lyme since 1990).
With my experience after a couple of weeks on Rocephin the major Herx started and I would feel horrible-every part of me. But that's good, then you know the Rocephin is working. See what type of pain killer your doctor recommends.
I have been on both intravenous Rocephin and Rocephin shots. Both work great.
A concern is with generic Rocephin (cephtriaxone sp?). My insurance company switched me to a generic (we are talking many years ago). At first the generic worked great, as good as name brand Rocephin. Then I got shipped a batch of generic that did not work. In fact made me feel worse, in a non herx way. I believe from memory that maybe later I received an effective batch, but then more non effective/harmful batches. I stopped taking ceftriaxone.
Moral of the story. Try to stay on Rocephin and complain loudly if switched to an ineffective cephtriaxone.
Remember some pain killers. Aspirin still works best for me.
We'll Win
Posts: 107 | From maryland | Registered: Feb 2007
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GretaM
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posted
If the dose is bacteriostatic, then one could expect to feel worse on the pulse days off, as the bacteria susceptible (lyme, bartonella) may rebel/flare.
Bacteriocidal doses are the killing and blasting bacteria doses, and one would expect some kind of herx during pulse on, depending on bacterial load and detox methods in place. Ideally bacteriocidal is what we want.
Talk to your doc about feeling poopy on the days off. Perhaps a coinfection needs to be addressed.
My feeling poopy right away on the off portion of IV rocephin pulse was because bartonella would flare.
Is your son also taking actigal or ursodiol to protect his gallbladder from sludging? Rocephin has been linked to gallbladder sludging. Not sure if kids have a different drug to take to prevent biliary sludging.
Also, is his blood being checked regularly? When I was on IV, my blood was checked every 2-4 weeks.
Perhaps him feeling lousy on the days off could be related to the antibiotic itself.
IV rocephin with tindi pulses, and treating bartonella saved my life.
It does have it's risks though.
Best to phone his doc to be sure.
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Tracy9
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My son just finished 10 months of IV and the key was adding IV Flagyl or oral Tindamax as a cyst buster.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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