Wilma Jenks Posted June 22, 2011 Report Share Posted June 22, 2011 she is meaner every day on this stuff. in the past we have had bad reactions to generic. i am going to try brand name and see what happens. when we did a steroid burst, she started getting really aggressive and complaining about not wanting to die, and the same thing happened on the bactrim. we added biaxin and still happening. i am tryihg to wait it out, but it is so hard. ugh! Link to comment Share on other sites More sharing options...
momcap Posted June 23, 2011 Report Share Posted June 23, 2011 We had the same problem with Biaxin - stuck it out 1 month and couldn't continue. I also suspect Bartonella for DS. We see the LLMD in 2 weeks, so not sure what we'll do next. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted June 23, 2011 Author Report Share Posted June 23, 2011 what other antibiotics have u tried. have you treated the bartonella with 2 abx? can you also tell me what your child's symtoms are? Link to comment Share on other sites More sharing options...
FallingApart Posted June 23, 2011 Report Share Posted June 23, 2011 we are starting biaxin tomorrow, now i am scared! What did you do in place of biaxin if your child couldn't tolerate it? Link to comment Share on other sites More sharing options...
momcap Posted June 23, 2011 Report Share Posted June 23, 2011 Sorry - didn't mean to scare anyone. DS7 is not diagnosed with any TBI yet, and I have no idea what we are dealing with. We see the LLMD July 7th and will do testing then. I am positive for lyme and suspect he has congenital lyme. When I started researching lyme I became convinced he has bartonella too. But we haven't tested for that yet. He has a lot of psych symptoms - diagnosed mood disorder, OCD, ODD, General Anxiety Disorder, Selective Mutism, Separation Anxiety, Social Anxiety, SPD, ADHD, etc. He also has complained of severe pains, usually joints, but sometimes muscular, since he could talk. Then he started having severe chest pain. We were looking into PANDAS, but that didn't cover some of his stranger symptoms, like not being able to smell for a year. So I kept researching even while we pursued PANDAS treatment. He started regular dose abx with our family doc and he did much better (amoxicillin, penicillin, zith). Then we tried high dose augmentin with a PANDAS doc and he raged non-stop for a month. It was really scary! Then we tried Biaxin for a month and it was only slightly better. He was really aggressive, angry, unpredictable. Also on the biaxin he started having WAY more physical symptoms - rashes, fevers, shocking sensations in his arms, swollen joints, etc - what I now think was a herx, or toxic overload. We were only thinking PANDAS up until that point and I had only just started reading about lyme. After that I insisted on testing for lyme, but it was negative at a regular lab. I tested positive, so we're doing IGeneX with the LLMD at our appointment in July. I'm very anxious for the results. I don't know if I'm more afraid they will be positive or negative. I just want to know what it is we're fighting! Link to comment Share on other sites More sharing options...
Suzan Posted June 23, 2011 Report Share Posted June 23, 2011 what other antibiotics have u tried. have you treated the bartonella with 2 abx? can you also tell me what your child's symtoms are? I'm on doxycycline for overall bartonella coverage according to my llmd but I have small symptoms if that makes any difference. I don't know how old you have to be to take doxy. Susan Link to comment Share on other sites More sharing options...
Wilma Jenks Posted June 23, 2011 Author Report Share Posted June 23, 2011 Falling Apart...Lots of parents say their children do really well on biaxin. This could be herxing that we are experiencing. Perhaps you should try it and see if it works for you?? Link to comment Share on other sites More sharing options...
rowingmom Posted June 23, 2011 Report Share Posted June 23, 2011 DD9 started biaxin 3 weeks ago and bactrim 2 weeks ago. Her headache, bone pain, foot pain, light sensitivity, inability to concentrate, motor tics, urinary frequency and fatigue increased 3 days after we started the bactrim. Last night she developed hives and I have started her on a antihistamine. The Canadian doctor at the walk-in clinic (our family doctor refuses to be involved with this) suggested that she may be having a reaction to the antibiotics (probably bactrim) and to take her off it. We saw the LLMD on Tuesday and I mentioned the herx reactions (dd had not developed hives at that point) and she suggested decreasing Abx dosages for a couple of weeks. DD9 has tested positive for Bartonella, but negative for Lyme using Igenex (band 41 was ++, bands 34, 39 indeterminate on IgG). We will not be renewing the biaxin and just continue with bactrim for Bart along with Banderol and Samento. Symptoms are definately heading down hill, but this is a good thing, right? LLMD is out of the office today - that figures. Link to comment Share on other sites More sharing options...
susie Posted June 23, 2011 Report Share Posted June 23, 2011 We just stopped Biaxin 2 days ago after several months on it and I cannot believe the positive difference in my child's mood. She is seeming so much happier and less anxious and more "with it". I've been racking my brain trying to figure out if there's any other factor that could have caused such a difference and I'm not coming up with much else. The difference is remarkable. I just looked up side effects of Biaxin, and anxiety and nightmares (she has those too) are both rare side effects. I guess she was one of the unlucky ones. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted June 23, 2011 Author Report Share Posted June 23, 2011 susie, are you saying she is better off of it, or better because she was on it and your seeing the good results from it after you stopped??? sorry, just not sure. Link to comment Share on other sites More sharing options...
tpotter Posted June 23, 2011 Report Share Posted June 23, 2011 Azith is an alternate to biaxin. Both my kids are allergic to biaxin so they weren't options. Unfortunately, DS15 had anaphalaxis to IV azith, and now won't be able to take the oral azith anymore. But, he's doing fine on clindomycin. We're treating bartonella with clindomycin and flaggyl (IV), but I think those are also options orally for bartonella. Link to comment Share on other sites More sharing options...
susie Posted June 24, 2011 Report Share Posted June 24, 2011 susie, are you saying she is better off of it, or better because she was on it and your seeing the good results from it after you stopped??? sorry, just not sure. I'm thinking she's better off without it. I'll let you know in a few days if it's just coincidence. Link to comment Share on other sites More sharing options...
Tamistwins Posted June 28, 2011 Report Share Posted June 28, 2011 susie, are you saying she is better off of it, or better because she was on it and your seeing the good results from it after you stopped??? sorry, just not sure. I'm thinking she's better off without it. I'll let you know in a few days if it's just coincidence. Biaxin really helped my son fight off his mycoplasma infection I can't say that it helped with behavior. We are treating bartonella with cipro and rifampin after azith and rifampin didn't seem to do much. Cipro has completely gotten rid of my daughters tics. Behavior still sucks:( Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now