911RN Posted February 24, 2012 Report Posted February 24, 2012 Hello Lyme Mamas and Dads, I wrote once before thinking my neurotypical son may have been exposed to Bartonella, in last year, based on waxing and waning stretch mark- like rashes on his arms, chest and groin over the last year. I have watched it long enough- comes and goes, fades and returns very ropey and dark. I think he has it. Planning to take him to Peds----they can do titers or whatever they want to do or just treat him with round of antibiotics. He is asymptomatic as far as I can tell of other symptoms- just the rash that seem to be following a tick borne illness cycling. Upon researching- seems like Levaquin is the drug of choice for treatment not Doxy as I had surmised. Questions: What are Lyme forum folks being treated with for Bartonella??? I have read a month or two of antibiotics may be necessary? Does this sound right? As I have said- NT, no issues, good student, good grades, no other issues other than rash---stretch marks? He is not overweight. He is my outdoorsy kid and he/I have pulled more ticks off him over the years than I care to mention. Thanks, in advance, for any replies.
lyme_mom Posted February 24, 2012 Report Posted February 24, 2012 Rifampin is what we were treated w and it takes 5 or 6onths at least. I'd want to do energetic testing to see if it's bartonella before treating because he has no other symptoms.
momcap Posted February 24, 2012 Report Posted February 24, 2012 We were treating with bactrim, but it was not well tolerated (mood s/e), so we recently switched to Rifampin. It's too early to say, but I already think it's doing its job. It's only been a week and he's noticeably calmer and happier. My boys are playing together happily for hours at a time, something that never happened before. He is having more physical symptoms though - tingling in the hands and feet, mild diarrhea, sore soles, joint pains (nothing new, but sx we haven't seen in a while). So I guess we'll see how it goes.
Bill Posted February 24, 2012 Report Posted February 24, 2012 Our doctor has stayed with azithromycin and minocycline to treat both the lyme bacteria and bartonella. Up until last week, we also added tindamax on the weekend; just switched to flagyl. Believe that's just for the lyme bacteria though.
rowingmom Posted February 25, 2012 Report Posted February 25, 2012 Our LLMD Rx rifampin/biaxin which has been working wonders for pain and motor/vocal ticcing. We tried switching to biaxin/plaquenil after 3 months, but all the bartonella symptoms had reappeared after another 3 months. Back to biaxin/rifampin and in 3 weeks all symptoms have resolved again. Rifampin seems to be the key for us.
MichaelTampa Posted February 25, 2012 Report Posted February 25, 2012 Levaquin is a 3rd generation fluoroquinolone. I was treated for bartonella with gemifloxacin (a 4th generation fluoroquinolone) directly targeting the bartonella, but taken along with tindamax and telithromycin targeting the borrelia, and, for a period of time, also with clindamycin to get the babesia. If one can tolerate it, one can be more successful targeting all the coinfections/infections at once rather than trying to go at it one at a time.
SSS Posted February 25, 2012 Report Posted February 25, 2012 Levaquin is a 3rd generation fluoroquinolone. I was treated for bartonella with gemifloxacin (a 4th generation fluoroquinolone) directly targeting the bartonella, but taken along with tindamax and telithromycin targeting the borrelia, and, for a period of time, also with clindamycin to get the babesia. If one can tolerate it, one can be more successful targeting all the coinfections/infections at once rather than trying to go at it one at a time. Because I had a positive bartonella test out the gate, our Dr. had given me Levaquin (by itself) for 6 weeks- it was a doozy, but hit bartonella for sure. Since then, I did 4 weeks of Rifampin, was feeling great about 2 weeks into it, a deep relaxation in my mind I hadn't felt in I don't know how long. Got pulled off it. Lost the gains I had been feeling. Weeks later, put back on Rifampin- it's been a week and a half back on, and I am herxing horribly-probably the worst week I've had- BUT- it feels and all the symptoms flaring now are babseia, which I have never treated. We are seeing a new Lyme Dr. on Tuesday and making a switch. All of this back and forth isn't working for me (us.) So, I guess if bartonella is a standalone Lyme infection, which I am not sure is possible, any of the standard bartonella antibiotics will hit it, but if there are other infections there, too- well, it's bloody complicated and you can stir up some serious stuff- which is why it's very important to have a knowledgeable Dr.
mdmom Posted February 25, 2012 Report Posted February 25, 2012 Our LLMD treats Bartonella with a pulsing therapy of 21 days of Rifampin Mon-Fri, Azithromycin Sat-Sun. then we break from this and do 7 days of Flagyl. And repeat the whole thing for I'm not sure how many months, as we are into month 4.
911RN Posted February 25, 2012 Author Report Posted February 25, 2012 WOW!!!! Thanks for all the replies. Seems like everyone is doing something a little different- no standard protocol. I am not highly suspicious for LYME- no symptoms. Although, I understand that bartonella is seldom a stand alone infection and one must consider it to be a co infection. I think I may just ask Peds for titer testing for both and see what happens. I'm thinking that since the only symptom he seems to have is rash- he may respond well to conventional therapy- 1 to 2 antibiotic cocktail for reasonable amount of time? Thanks for ALL!
MichaelTampa Posted February 25, 2012 Report Posted February 25, 2012 Bartonella is a.k.a. cat scratch fever, so perhaps it can be standalone for cats, but, agree, don't here too much about it being standalone for humans.
RNmom Posted February 26, 2012 Report Posted February 26, 2012 Bartonella can be a "stand alone" infection but it is a common Lyme co-infection. There are a couple of difficult issues to deal with whne treating Bartonella.: 1) The antibiotics that treat Bartonella do not address Lyme or the other co-infections. 2) You must be on the antibiotics for Bartonella for at least 6 months to a year. some people need even longer. 3). Rifampin is one of the best drugs for Bartonella but it must be combined with another antibiotic such as Azithromycin, Bactrim, or Cipro. the reason for this is that Bartonella very quickly develops resistance to Rifampin if given alone. (There is a lot of literature about this regarding the use of Rifampin to treat TB.) 4). Starting and stopping (and/or restarting) Rifampin is not the best practice. I know it is common to "pulse" Rifampin. However, the medical literature frequently states that "flu-like symptoms" often occur when the Rifampin is restarted (who knows if this is actually a Bartonella Herxheimer in an undiagnosed patient rather than "flu-like symptoms.") Allergic reactions to Rifampin are also more likely when pulsing this antibiotic. Most of all the risk of developing a Rifampin resistant strain is the biggest reason not to stop and start this particular antibiotic. 5) Overall, due to the rapid replication of the Bartonella organism (days)it is easy to fall back to square one in the treatment process when the Bartonella treatment is put on pause.
911RN Posted February 26, 2012 Author Report Posted February 26, 2012 Bartonella can be a "stand alone" infection but it is a common Lyme co-infection. There are a couple of difficult issues to deal with whne treating Bartonella.: 1) The antibiotics that treat Bartonella do not address Lyme or the other co-infections. 2) You must be on the antibiotics for Bartonella for at least 6 months to a year. some people need even longer. 3). Rifampin is one of the best drugs for Bartonella but it must be combined with another antibiotic such as Azithromycin, Bactrim, or Cipro. the reason for this is that Bartonella very quickly develops resistance to Rifampin if given alone. (There is a lot of literature about this regarding the use of Rifampin to treat TB.) 4). Starting and stopping (and/or restarting) Rifampin is not the best practice. I know it is common to "pulse" Rifampin. However, the medical literature frequently states that "flu-like symptoms" often occur when the Rifampin is restarted (who knows if this is actually a Bartonella Herxheimer in an undiagnosed patient rather than "flu-like symptoms.") Allergic reactions to Rifampin are also more likely when pulsing this antibiotic. Most of all the risk of developing a Rifampin resistant strain is the biggest reason not to stop and start this particular antibiotic. 5) Overall, due to the rapid replication of the Bartonella organism (days)it is easy to fall back to square one in the treatment process when the Bartonella treatment is put on pause. Great info...thanks for sharing. I'll keep all this in mind. I'm going to schedule appt with Peds and see where to go from here.Batonella, lyme titers etc.
MamaOnAMission Posted February 27, 2012 Report Posted February 27, 2012 (edited) So bactrim and minocycline are not addressing my child's Lyme, it's only dealing with her battonella? I'm surprised since I'm going to top LLMD and was not it told this. Edited October 3, 2012 by Lilly
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