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Need to change meds or give up on bartonells


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the bactrim is making my child way too aggressive. I see her getting worse. I know others have had this happen with Bactrim. Please tell me what you tried next???? Have some of you given up on the bartonella diagnosis after lots of failures with abx. Need some support. Thanks so much. I am so disappointed. She has been on this stuff for almost 4 months. On the dose I need to get her to sleep she gets toooo aggressive. You can't live with her. Adding probiotic does not work. All meds and abx. thus far have made her more aggressive. Ugh. I hate that this happened to this lovely girl. I am so mad at the world right now. Thanks for listening!!!

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We were told that rifampin was the drug of choice for bartonella. DS10's titres went from positive to almost negative in 4 months on rifampin. You have to monitor liver functions, though, and it turns their urine and their tears orange.

 

the bactrim is making my child way too aggressive. I see her getting worse. I know others have had this happen with Bactrim. Please tell me what you tried next???? Have some of you given up on the bartonella diagnosis after lots of failures with abx. Need some support. Thanks so much. I am so disappointed. She has been on this stuff for almost 4 months. On the dose I need to get her to sleep she gets toooo aggressive. You can't live with her. Adding probiotic does not work. All meds and abx. thus far have made her more aggressive. Ugh. I hate that this happened to this lovely girl. I am so mad at the world right now. Thanks for listening!!!

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My DD10 had to switch from bactrim to rifampin for bartonella because of an allergic reaction to bactrim, as well as an increase in liver enzyme tests. She has responded very well to rifampin (pain symptoms and motor tics nearly resolved) and her liver tests are now normal. She has been taking rifampin for 4 months now. We use melatonin for sleep issues.

Edited by rowingmom
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Even if rifamping isn't an option for your son, or if you try it and for some reason it is not the answer, please understand there are still other ways to go about things. You might consider a naturopath style doctor with herbals and other supplements, at least to get things started. That gentler approach might end up being better.

 

Have you considered other factors that can affect his health/behavior, particularly with bartonella, such as exposure to fluorescent lights or wireless signals? The regular incandescent light bulbs are being phased out, actually made illegal over a period of time starting, with 1/1/2012 for the 100 watt light bulbs. But, they are already getting much less floor space in the stores, and at some point are going to be very difficult to purchase. If you have not already considered this issue for your son, it might be time to do so.

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I believe that Bactrim is a "Sulfa" drug and many are reactive/allergic to Sulfa. Our son is so we are on Rifampin. Worth talking to your doc about. John L

 

 

the bactrim is making my child way too aggressive. I see her getting worse. I know others have had this happen with Bactrim. Please tell me what you tried next???? Have some of you given up on the bartonella diagnosis after lots of failures with abx. Need some support. Thanks so much. I am so disappointed. She has been on this stuff for almost 4 months. On the dose I need to get her to sleep she gets toooo aggressive. You can't live with her. Adding probiotic does not work. All meds and abx. thus far have made her more aggressive. Ugh. I hate that this happened to this lovely girl. I am so mad at the world right now. Thanks for listening!!!

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I agree with Michael.

Its heart breaking to read so many suggestions being only for antibiotics. Bartonella is a very smart bug and extremely immune suppressing. It will morph its surface proteins and most drugs are ineffective after a while. Then there is the problem of strepbartonella organism starting to emerge where bartonella and strep protein factors are similar and they morph into one recombitant organism. Strep is very common in the general population as we know.Yes, I do have research studies and no I don't think its feasible for me to go into all that. Its all part of my learning, reading, R&D efforts, etc and its hard to go back and look for citations for evrything I remember learning about. Im merely sharing what I've learned and seen personally and professionally.

 

A naturopathic approach along with conventional meds is the key. I understand finances are a concern for all of us but there are ways to get the a good bang for your buck if you work with a good holistic practitioner. Its next to impossible to get rid of lyme and Co without a holistic approach added in.Most families on the forums that have seen some sustained benefit are using a combination approach. A simple detox with clay or charcoal is not adequate in the least bit. There needs to be a specific protocol, organ support and nutritional balance. Expecting the body to physiologically handle so many powerful meds without support is futile.

 

Anyways, Im not saying anything I havent said before so I'll stop here. I was drawn to reply becuase of what I've been seeing last few months at work too. Children (two children and one 36 year old male in my practice) whose parents have had them on several powerful antibiotics in rotation for a long time and are now trying to detox and go holistic after almost a year of conventional Rx are having serious autoimmune issues. The two children are now coming up positive for LUPUS as is the 36 year old whose leg muscles have started to get paralyzed and we are doing urgent chelation to get rid of his heavy metal load and clean up so his immune system stops attacking his nerves. The two kids they are non symptomatic right now but with very high Lupus titers- the antinuclear antibodies.

Autoimmunity is a very serious part of late stage lyme and neuroborreliosis. Its truly hearbreaking to see this over and over again. I wish there was some way to make parents/people understand the importance of a combo approach done right. There really isnt and most parents try to do the best they can.

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I believe that Bactrim is a "Sulfa" drug and many are reactive/allergic to Sulfa. Our son is so we are on Rifampin. Worth talking to your doc about. John L

 

 

the bactrim is making my child way too aggressive. I see her getting worse. I know others have had this happen with Bactrim. Please tell me what you tried next???? Have some of you given up on the bartonella diagnosis after lots of failures with abx. Need some support. Thanks so much. I am so disappointed. She has been on this stuff for almost 4 months. On the dose I need to get her to sleep she gets toooo aggressive. You can't live with her. Adding probiotic does not work. All meds and abx. thus far have made her more aggressive. Ugh. I hate that this happened to this lovely girl. I am so mad at the world right now. Thanks for listening!!!

 

If any of your kids are on Lamictal, they can't take Rifampin. It can reduce the effectiveness of the Lamictal. We have a problem with our DS that he can't take the Rifampin, and he also can't take azith, because he developed a terrible allergy to it. He is currently on bactrim, because he got cellulitis last week, but I don't think he'll be on it long. The bart rash is doing weird things again...may be related to the bactrim...hopefully making it better. It had started fading, then stopped fading, and starting expanding again. Now, it's turning very deep purple, but DS said it's been doing that, and will probably be light again tomorrow.

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