mama2alex Posted January 20, 2010 Report Share Posted January 20, 2010 Azithromycin doesn't seem to be helping my son, and IVIG was only minimally effective on the first try. Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. A while back our DAN doc tested our ds for Lyme and it was neg, but he was positive for Bartonella, a Lyme co-infection. We have never seen a tick on him and have never seen a bulls-eye rash, so we have not switched to the antibiotics that treat Bartonella yet. But since Azith isn't having an impact that I've seen, maybe we should. Any thoughts? Link to comment Share on other sites More sharing options...
peglem Posted January 20, 2010 Report Share Posted January 20, 2010 If it was me, I give it a try. Are there horrible side effects? Link to comment Share on other sites More sharing options...
Kayanne Posted January 20, 2010 Report Share Posted January 20, 2010 I'm curious as to why the DAN dr didn't treat for this infection, when he tested positive? Yes, I would give it a try. Which antibiotic is it, and what is the normal length and dose given? Link to comment Share on other sites More sharing options...
peglem Posted January 20, 2010 Report Share Posted January 20, 2010 I'm curious as to why the DAN dr didn't treat for this infection, when he tested positive? Yes, I would give it a try. Which antibiotic is it, and what is the normal length and dose given? How sad is it that it never occurred to me that the doctor should have treated for a discovered problem? I've met so few who do! Link to comment Share on other sites More sharing options...
P_Mom Posted January 20, 2010 Report Share Posted January 20, 2010 I thought Bartonella was treated with Doxycycline. It may be resistant to the others.... Sure, if he is coming up positive for Bartonella...you have to clear that...go for it....clear that, then address the PANDAS......it is just a matter of going on a different antibiotic for a bit. Link to comment Share on other sites More sharing options...
fuelforall Posted January 20, 2010 Report Share Posted January 20, 2010 Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. Please describe. Link to comment Share on other sites More sharing options...
mama2alex Posted January 20, 2010 Author Report Share Posted January 20, 2010 I'm curious as to why the DAN dr didn't treat for this infection, when he tested positive? Yes, I would give it a try. Which antibiotic is it, and what is the normal length and dose given? Because unfortunately my husband and I, armed with our business degrees, are making all the decisions, because there isn't one doctor who seems to understand all of this. As I'm sure many here have, we've gotten a lot of conflicting advice. My son had positive strep titers and high Cam Kinase, so we wanted to pursue that. The DAN doc said we'd have to go off the Azith and do the other antibiotic for several months. Also, he was saying he didn't think Alex has PANDAS, but actually has Lyme Disease, which didn't seem right. I think P.Mom is right, Bartonella is treated with Doxycycline, although I'd have to check my notes. At this point, given the lack of success with Azith, we may do this next. Link to comment Share on other sites More sharing options...
mama2alex Posted January 20, 2010 Author Report Share Posted January 20, 2010 Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. Please describe. When we gave him prednisone, his anxiety got worse and by day 3 he was hearing voices coming from the other room. Once we took him off, those symptoms went away and within a few days he was no longer afraid there was a robber in the house and wasn't having us check repeatedly. Then he got a cold (about 7 - 10 days after we stopped prednisone) and the robber fear and checking returned. Link to comment Share on other sites More sharing options...
EAMom Posted January 20, 2010 Report Share Posted January 20, 2010 I read somewhere that you treat bartonella with Azith. (for kids)...I'm guessing you want to stay away from the tetracyclines/doxycycline in kids if possible. How good is the test? Is it possible it's a false positive? Would it be worthwhile to re-run the bartonella test or are there other confirmatory tests you could run? Link to comment Share on other sites More sharing options...
amy s Posted January 21, 2010 Report Share Posted January 21, 2010 Yes, my dd tested + for bartonella. She had multiple ongoing infections at the time...but zithromax 250mg daily for 6 months was given for this (plus for the mycoplasma pneumonia) and she was also given PCN injection monthly to treat all (plus the strept)....(later was switched to Augmentin instead of PCN) IVIg for my dd was extremely successful for my dd (she is 15 months post IVIg). I know some do zithromax and rifampin together for bartonella. I am sorry to hear about your son and hope he gets well soon!!! Link to comment Share on other sites More sharing options...
P_Mom Posted January 21, 2010 Report Share Posted January 21, 2010 Oh, that is right....Doxy is first choice,, but, you can't use it for children under 8....it will mess up their teeth. Link to comment Share on other sites More sharing options...
mama2alex Posted January 21, 2010 Author Report Share Posted January 21, 2010 I don't know anything about Doxycycline - why would you not want to give it to kids? Very good point about the false positive - maybe we'll have him rerun the test. I read somewhere that you treat bartonella with Azith. (for kids)...I'm guessing you want to stay away from the tetracyclines/doxycycline in kids if possible. How good is the test? Is it possible it's a false positive? Would it be worthwhile to re-run the bartonella test or are there other confirmatory tests you could run? Link to comment Share on other sites More sharing options...
smartyjones Posted January 21, 2010 Report Share Posted January 21, 2010 I don't know anything about Doxycycline - why would you not want to give it to kids? i saw a friend of mine yesterday who is a pharmacist and her kids had confirmed lyme in the past but she thinks they're still having effects. she said doxycylcine is not good for the growing bones of kids. Link to comment Share on other sites More sharing options...
melanie Posted January 21, 2010 Report Share Posted January 21, 2010 http://www.lymedisease.org/lyme101/coinfec...bartonella.html Link to comment Share on other sites More sharing options...
Charlotte Mom Posted January 21, 2010 Report Share Posted January 21, 2010 Azithromycin doesn't seem to be helping my son, and IVIG was only minimally effective on the first try. Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. A while back our DAN doc tested our ds for Lyme and it was neg, but he was positive for Bartonella, a Lyme co-infection. We have never seen a tick on him and have never seen a bulls-eye rash, so we have not switched to the antibiotics that treat Bartonella yet. But since Azith isn't having an impact that I've seen, maybe we should. Any thoughts? I am talking with my cousin a lot about this sort of thing. Her family had Lyme - one of her sons was very severe, but they all had it. THe symptoms he displayed very much resembled the PANDAS symptoms. They Lyme symptoms are very familiar. Bartonella and Babesia apparently are worse than having Lyme - so yes, I think you should see a lyme specialist and have him treated for lyme. I am looking at this now.... as I am beginning to suspect that Lyme, not strep, are at the root of our problem. The treatments for Lyme are more agressive, so even if Lyme wasn't at the root, I am thinking you could kill two birds wtih one stone. It is VERY hard to find a Lyme expert in this country. Most doctors who treat lyme are black-balled from the insurance companies (who don't want to pay for these expensive treatments) and so they report the docs to the state medical boards who then have to investigate them. It's a pretty ugly scene. If you need a doctor name, I am getting some from my cousin. Also, my cousin suggested that I read the book "Cure Unknown" and watch the movie "Under Our Skin." I just ordered the book on-line (none of my local bookstores had it) and I also just ordered the movie, which you can get at www.underourskin.com Curious - has anyone read this book or seen this movie? For those considering testing their child, FYI the standard tests DO NOT WORK. They may detect Lyme for some, but not reliable. Also you don't want just the result positive or negative - you need the levels/bands or something like that. The best test for Lyme cost $200 - you order it from Ingenectics - you want the IgG and the IgM. They also have Bartonella and Babesia test, but they are more expensive and from what I understand these are best diagnosed with symptoms, becasue even the Igenectics test isn't good enough to detect these reliably.... meaning you could test negative and still have it. Igenectics number is 800-832-3200. I ordered mine and we are tesing my whole family next week. Anyone else currently seeking Lyme treatements? 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