posted
How can you tell that your current abx protocol isn't doing the trick? Should we wait a specified amount of time and see if there is any improvement? How much time then?
I've been on Ceftin, Plaquenil, Rifampin, and Flagyl 3 days a week pulses for several months now. I can't say that I'm any better. Maybe I would have been much worse off without the abx but it doesn't seem to be getting any better.
When do you call it quits on an abx protocol and try a different combo?
Thanks,
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would say several months is long enough.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
It's difficult to say whether I have co-infections or not as testing is inaccurate. I was tested for babesia, bartonella, and erlichia with quest labs about 4 or 5 months ago and the test was negative. I know that means nothing.
I can only go by my symptoms. I without a doubt have some form of borelia because of the positive 41 and 23 bands along with my classic lyme symptoms.
It's hard to say whether I have experienced any herxing. It seems like there is no discernable difference between a flare of symptoms from infection and a herx flare. My symptoms wax and wane pretty much daily. I haven't made it a single day in 6-7 months without headaches. The headaches come and go in severity throughout the day.
I feel like it may be time to switch protocols but I don't want to quit too early if it needs more time. Seems to me that I would be seeing some undeniable improvement by now if it was going to work.
Thanks,
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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posted
Have you looked into babesia? Your meds seem to be targetting lyme and bartonella...but not babs...perhaps something to discuss with your doc?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Maybe the pulsing isn't working for you.
It could be you're not treating babesia.
It's hard to say, but I'd discuss it with your LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
You think pulsing is a bad idea with the flagyl?
I was taking artemisinin a while back but I stopped taking it. Maybe I should revisit it.
I've got to set up a phone appointment with my LLMD. She lives 7 hrs away from me and I've only seen her in person once. She said we could try phone appointments and see how that goes.
Posts: 92 | From Georgia | Registered: Aug 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I looked up your meds in the Burrascano Guidelines to see what dosages he recommends of each.
For ceftin, on page 18 he says to take 1 gram (1,000 mg) every 12 hours.
He doesn't give any dosage for rifampin. So, he is not considering it a primary lyme drug. He says it has helped many patients with a number of diseases. Then, on page 16 he says:
"Finally, because this drug is an inducer of cytochromes (CYP3A4), co-administration with other medications may result in lower and more brief blood levels of the coadministered drug. Thus, be aware of these potential drug interactions."
So, the take-away here is that the rifampin can be lowering the ceftin and other med levels. Not good.
For the plaquenil, he says to add it to zith or Biaxin in 200-400 mg per day.
For the flagyl, he says on p. 18 to take 500 to 1500 mg in divided doses per day.
So, things for you to consider are:
Are you on adequate doses? Are you on good combinations of meds?
A lyme doc I know likes to use Ceftin in combination with doxy. Then, later, Omnicef and flagyl.
When I was given flagyl, I took it daily as Burrascano recommends. But, I was taking it at the end of my lyme treatment to get rid of all of the cysts that had built up over the years with no flagyl ever. I see no problem using flagyl in a pulsed way throughout lyme treatment.
I don't see any sense in taking artemesinin alone. To me, it should be taken once you have started babesiosis treatment. So, first start your babs meds and then, a few weeks later, add art in a pulsed fashion. (3 days in a row per week) Art alone can't do much against babs in my opinion. I follow Burrascano who says to kill babs with mepron/zith and add artimesinin.
If you have been on your protocol for 3 months or more without any improvement, I would want to ask for a change of meds.
I would prefer a med combo recommended in Burrascano. He names some on page 12 of his Guidelines.
To look up your meds in Burrascano's Guidelines, first look up their generic name on the internet (or it may be on the bottle itself). Then, use the "find" function on-line to find every occurrence of that word in the Guidelines. This way, you will see everything Burrascano says about each med you are taking.
I advise everyone to really study the Burrascano Guidelines to get their education in this disease. It really pays off in many ways. Then, you can answer many questions for yourself.
posted
Thanks TF, that is some great information there. I have a phone appointment with my LLMD tomorrow. I'll ask what she recommends I do next. She claims she knows burrascano so she shouldn't object to those suggestions. I'll let you know what she says.
Thanks,
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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