posted
I am currently on IV doxy daily, zith M-F and flagyl on the weekends. My LLMD is going to attack bart tomorrow by adding either rifampin or bactrim/cipro to the mix. Any thoughts on which is better?
-------------------- ? 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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chiquita incognita
Unregistered
posted
Hi Tri I checked into the side effects of both drugs (rifampin, bactrim) and refused the rifampin because of two things:
A) It stains the tears, don't wear contact lenses B) this got me thinking C) I checked the pharmacy's own hand-outs, the leaflet about side effects. "Tumorigenic" means it can cause tumors.
My LLMD said that these are not cancerous tumors, thank God. Still, the vulnerabiility had me concerned. So I refused the drug.
My two cents worth. There are harsh side effects with the bactrim too but of course, the likelihood and how many people that really happens with, is the only thing to be asking about.
It would be interesting to see what others on this forum have actually experienced. Far be it from me to scare anybody from taking a medication which they really need, I would never want to do that. I still suggest it's important that we check into it though, unless we think it will scare us. In which case, sometimes, ignorance is bliss.
Or is it? I sure wouldn't want to end up with tumors because of my own ignorance. Just my two cents.
posted
My personal opinion is that bactrim does not do much of anything for bartonella. I have however come to the conclusion that the combo of bactrim plus alinia was bacteriostatic for hubby for babesia -- but not bacteriocidal.
As to the fluroquinolones -- cipro, levaquin and factive -- listed in order of effectiveness. Would probably suggest starting with levaquin.
Levaquin was a lifesaver for hubby the 2nd time around -- first time back in 2003 it did virtually nothing. But in 2007 it stopped his freezing up spells that were probably dystonia and not muscle rigors as orignally thought.
But the levaquin could not stop the nightly seizure-like episodes or Parkinsonian tremors.
The factive improved WBC and RBC both back to normal range within a couple of weeks(both had been slightly low for most of the time for at least a year). WBC has stayed normal now for over a year. RBC has dropped again now that we are treating heavily for babesia.
Rifampin was very hard to tolerate. Started at 50 mg and took 8 months I think to get to normal 600 mg. Was somewhat helpful but by itself didn't correct bloodcounts or stop major symptoms.
The first time hubby took rifampin back in 2005 I think it was -- he managed to take a total of 20 pills in 30 days. At that time it woke his brain up and he has had much less brain fog ever since. This med does tend to hype you up.
The combo of 900 mg of rifampin and factive pulsed for 6 months finally got rid of hubby's bart or BLO -- blood smear went from numerous coccobacilli in 2007 to several (5 % infection rate) in mid 2009 to clear (none seen) by December 2009.
Factive is fairly expensive but since it is still pretty new most docs can get samples. Hubby tried various pulsing schedules -- the one that seemed to work best was 5 days on and 2 days off. 5 or 7 days off was too long.
At one time hubby's doc had him on a 5 drug combo. It was supposed to target lyme, babesia and bartonella. It was what stabilized him until he could get to high enough doses to actually try to eradicate his infections. As I mentioned he took 8 months to get to what the doc considered target doses -- but those doses were not high enough to prevent multiple crashes requiring ER visits and hospital stays.
The meds were -- bactrim, alinia, minocycline, zithromax and rifampin -- all orals. Mino is the same class as doxy and alinia has flagyl as one of its components so it does look like the meds you have listed could be combined. But it would be a very strong combo.
You didn't say if the zith or flagyl were IV or oral? If those are also IV adding in either of the options you have listed would be very very strong. If you have not treated for bart I would be very very concerned about combining all of those meds.
IV Zith was 10 times more effective for hubby than oral. And even though tindamax put him in the ER and hospital twice and he had been on it for 6 months I think he still herxed with the flagyl. For him that is working on his babs in combo with other babs meds.
But depending on your bart symptoms either rifampin or any of the fluroquinolones could cause major flare-ups of psych symptoms or seizure-like activity.
This is not medical advice, just my opinion based on hubby's experiences.
Good luck and keep us posted.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Bactrim worked great for me-but maybe it was hitting babs. I also thought Rifampin worked well-I had no problems
Posts: 1276 | From maryland | Registered: Jan 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Bactrim did nothing for me or hubby. It did seem to help my daughter. Although it also contributed to her blocked liver/kidneys as it's a sulpha drug (she tested high sulfates).
Levaquin knocked hubby out. He took it for 4 weeks but was extremely tired during and after for about 3 more months. He'd come home from work and just sit. He' was not tired before Levaquin. (Daughter and I never took Levaquin.)
Rifampin helped me make huge progress. It got me functioning again. It helped Hubby too. Daughter not so much but by then she wasn't detoxing well.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Gosh, Bea has so much incredible information.
I think you and I struggle with the same symptom.
I can say that Rifampin made me more spacey than ever. I could not tell if I was having a herx or getting worse. After a few months, I would say that it has helped the brain fog. When I added Levaquin it seemed to increase the efficacy (sp).
I would ramp up slow if you are doing Rifampin on top of IV Doxy.
Posts: 2232 | From USA | Registered: Aug 2009
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Well, my LLMD added in rifampin...starting the end of this week! Yikes! Hopefully, that will do SOMETHING, as NOTHING has hit the bugs in my brain...AT ALL!
-------------------- ? 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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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Dr. S says Rifampin is the drug of choice for peole with brain fog / depersonalization. Good luck!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I am taking Rifampin for almost 3 months and wear contact lenses and have not had any issues w/ staining. I am concerned though about the tumors but it seems like all the abx have the potential for undesirable side effects.
Posts: 376 | From New York | Registered: Jan 2011
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