posted
I just started IV Rocephin 2 weeks ago at 1gm/day. I've heard that this dose is a little low and am curious what dose others have taken, although the first dose gave me a huge herx, but not so much since then. Also, what are the steady state peaks and troughs that we should be shooting for for best results, or is there no data for this?
Posts: 975 | From California | Registered: Apr 2007
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gmb
Unregistered
posted
I started last Decembr at 2gr once a day, then 2 months later went up to 2gr two times a day for four days on, then 3 days off.
Still at it, but fighting Babs is my biggest problem
posted
Seems low to me. I started at 2 grams a day and I am very petite 95 lbs. I did not pulse this, it was everyday.
Posts: 200 | From Boston | Registered: Sep 2010
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AuntyLynn
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posted
Even though you are on IV continuously, Borrelia only replicates every 28-30 days. The spirochete is only susceptible to destruction by the abx while it is replicating.
Thus, you will likely only experience a strong Herx during the replication phase, about once a month. And according to recent speeches given by Dr. S, most neuro Lyme patiennts won't even begin to feel some improvemet until they are on IV for at least four months.
Please see my new post about Dr. S and Dr. F studies on neuroborreliosis.
Good luck with your treatment!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
I was pulsing rocephin 4 days per wk and taking oral flagyl the other 3 days. This would mean a higher dose. It was 4 gr per day.
However, the higher dose didn't help me heal. I remained sick after the tx. I think the problem is duration, at least for neurolyme. Don't worry too much about the dose, but rather keep on it as long as you possibly can. I had 3 months, needed 3 years. I would have MUCH preferred a lower dose and longer treatment knowing what I know now.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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AuntyLynn
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posted
twicebitten -
I agree with your assessment. Since Dr. S and even the Dr. E (monkey study) seemed more concerned with keeping a high and steady titer of Rocephin, to me, pulsing makes absolutely no sense! (What if you were on flagyl for exactly the 3 days Bb was replicating? You miss a killing cycle that month?)
The only reason to pulse, IMHO, is if the patient cannot tolerate the tx. In that case, "something" is better than nothing.
But as a general course of action? I think pulsing is counterproductive.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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psano2 -
If you are concerned that your 1 gm is a little low, wait and see. You are new to IV, and no one ever knows how a patient will react to "Mainlining" an antibiotic. Your doctor is "erring on the side of caution" to start you off on the lowest dose... which, BTW is often quite effective!
My Mom had 1 gm for 28 days; and save for wanting to nap in the afternoons during the last 2 weeks of treatment, I saw no adverse reaction. She tolerated it completely.
You have only been on IV for 2 weeks. You say you herxed right away. Hard to say if this was because it was your first serious attack against Bb, or if they just happened to start your treatment on exactly the right time of its replication cycle. My guess is the former - immediate reaction to a serious treatment challenge.
How long are you scheduled to take IV? My guess is that you won't start to notice a "herx pattern" until you have been on it for a minimum of 2-3 mos.
Just my completely "unprofessional" opinion.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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TF
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posted
From page 16 of the Burrascano Lyme Treatment Guidelines:
"One successful approach in the more ill patient, published in the early 1990s, is to use higher doses of ceftriaxone in a pulsed-dose regimen. Since then, clinical experience has expanded upon this concept, and at the MLDA Lyme Congress in September, 2002, Cichon presented data on a pulsed, high dose regimen which supports and refines this concept. This regimen is now considered the current standard of care in the use of ceftriaxone.
Treatment with ceftriaxone is dosed at 4 grams daily- given either as 2 grams IV twice daily, or 4 grams slowly once a day, four days in a row each week, usually for 14 or more weeks. Such a regimen is not only more effective in the Chronic Lyme patient, but regular interruptions in treatment lessen the potential complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis. Hence a more effective, safer regimen that by virtue of the treatment breaks, is less costly and affords the patient a more acceptable lifestyle. IV access with a heparin lock becomes possible (and preferred)."
As you can see by the above, the standard of care (best approach) to IV Rocephin in 2008 was the high-dose 4 day per week (pulsed)approach! So, all the lyme doctors concluded that the pulsed approach made sense!
I don't believe this has changed. A current lyme patient had her lyme doc look into it when she was put on a lower dose.
I had a friend who had the low dose approach for months. She considered it a waste of time. When she switched docs and went to the 4 grams per day, 4 days per week, she finally herxed and made progress.
Notice that Burrascano explains why pulsing high doses of meds works when he talks about the tetracyclines in the quote below:
"Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid. Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen." (page 14)
It has to do with kill kinetics.
AuntyLynn, lyme is not as simple as you may think. How do you know that ALL the lyme bacteria are on the same reproductive cycle? Don't assume important things like this.
There is a reason that herxes happen shortly (around 2 days) after starting new meds. All lyme patients experience the herx at this time. How can this be if the lyme is only susceptible to being killed a few days out of every 28 days? These are things to consider.
"Several days after the onset of appropriate antibiotic therapy, symptoms often flare due to lysis of the spirochetes with release of increased amount of antigenic material and possibly bacterial toxins. This is referred to as a Jarisch Herxheimer-like reaction. Because it takes 48 to 72 hours of therapy to initiate bacterial killing, the Herxheimer reaction is therefore delayed." (page 17)
Perhaps SOME of a person's lyme bacteria are replicating each day. In a 28 day period, they will all have replicated and had the opportunity to be killed. That is how I make sense out of the fact that we all herx shortly after starting new meds. Do you think this herx always happens at this time because, no matter what date you start meds, all of your lyme bacteria just happen to be reproducing that day or the next day or so?
Some people continue to herx for a week or 2. This makes sense to me if the lyme in our bodies are all on different reproduction cycles.
I really think there are a lot of unknows regarding this topic, even in the year 2012.
It isn't so easy to figure out what this complex bacteria is capable of doing. But, the slow growth cycle is certainly why all lyme doctors agree that treatment must be continued for many months to kill all bacteria.
"It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism�s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks.
If the antibiotics are working, over time these flares will lessen in severity and duration. The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued.
With treatment, these monthly symptom flares are exaggerated and presumably represent recurrent Herxheimer-like reactions as Bb enters its vulnerable growth phase and then are lysed." (page 17)
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AuntyLynn
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posted
TF - Thanks so much for this information! I learn something new every day on this site.
(Which is why I made the disclaimer in my last post, that my opinion was "completely unprofessional!" Just making deductions based on what I have read, and recalled, in the past.)
Burrascano himself confirms the theory of the 4 week cycles...
"It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism�s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks."
Never heard that Dr. B recommends pulsed doses, especially in chronic cases, to spike the dose. And point well-taken that just because it may take 28 days for replication, doesn't mean that every bug in your body is on that same monthly cycle!
However, if you look at Stricker and Fallon, this was not their methodology ... and even Embers was concerned to keep a "steady" dose. (Because the IDSA crowd had criticized earlier ILADs studies, claiming that their testing of the IDSA treatment protocol had failed in ILADs studies, because the ILADs researchers "hadn't kept ABX at acceptable high/steady doses!")
We're all still human guinea pigs when it comes to Lyme & Co.s. But it's really gratifying that ILADs practioners and researchers seem to be making progress.
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