Zithromax and PANDAS

[dut]

Prophylaxis- strep or immunomodulatory/anti-inflammatory reasons.

 

Hello. I was wondering if people who are using zithromax prophylactically are doing so to keep new strep infections at bay ( we're doing that- zith one day a week) or to keep symptoms in check. And for those using to keep symptoms in check, is it 'cos you feel it keeps down some low grade/resistant strep infection or because the immunomodulatry and anti-inflammatory effect is what is at work?

 

What I'm trying to say is that if it's just the anti-inflammatory effect that works for some could we be using something that works for that just as well but doesn't wipe out gut flora or have maybe more serious ramifications.

 

We have noticed with our daughter - PANDAS -bad episode that included some minor tics, lots of ocd, adha, oppositional, very emotional etc, that went from a peak of say 100% symptoms to baseline of say 2% symptoms after 14 days amoxi, that when she has her 1 day a week zith for keeping new strep at bay we see those last few minor symptoms disappear for a couple of days. Her culture is negative and her titers are low so we think she has maybe just some residual inflammation left that's leaving her with the last bits and maybe the zith is lowering this.

 

We still want to be on zith for now but for those that may benefit from just anti-inflammatory effects could there be other safer options that would do the trick? dunno?

[lurker]

dut,

 

Search for posts by Uma K. This is exactly what she has done. She has a PANDAS child and wanted to immunomodulate naturally and stay off antibiotics. Her child was mostly OCD, not tics, but she was kind enough to post here.

 

Tami

[dut]

excellent.. thank you

[michele]

Dr. Murphy recommended Omnicef or Augmentin for Andrew. She never mentioned Azith. Do you think we should continue to pursue the Zith with the immunologist? Is it really better for PANDAS? I have been turned down by several Dr's when asking for it to be used long term. It makes me wonder how others here are getting it so readily? We have a five year record of PANDAS episodes. I just wish they would publish a report of the antibiotics that work best for PANDAS. We tried Pen VK and it did not keep him episode free. Omnicef has worked best for him. He gets minor symptoms with exposure but never a full blown episode since we started it in Feb. If there are so many health risks with Zith is it really the best? What report dopeople bring to their Dr. when trying to get Zith for their kids?

 

Michele

You should truly feel blessed that your doc is willing to try this as my sons wont consider a short round. The question on the time frame for antibiotics: I just read an article that said it can take anywhere from 5-21 days to see improvements. My son's symptoms took about 6 days to see improvements, but his titers weren't elevated. According to Dr. Tanya Murphy's assistant, the antibiotics take longer to see improvement if the titers are elevated. At least that is what I thought she meant. I will try to post an article that the assistant emailed me, but I am computer challenged.

[curiousmom]

In additon to the 10 days of zithromax our dr. prescribed 25mg of 5-HTP. Has anyone else seen this prescribed? Our daughter is 9.

Thanks -

[peglem]

Dr. Murphy recommended Omnicef or Augmentin for Andrew. She never mentioned Azith. Do you think we should continue to pursue the Zith with the immunologist? Is it really better for PANDAS? I have been turned down by several Dr's when asking for it to be used long term. It makes me wonder how others here are getting it so readily? We have a five year record of PANDAS episodes. I just wish they would publish a report of the antibiotics that work best for PANDAS. We tried Pen VK and it did not keep him episode free. Omnicef has worked best for him. He gets minor symptoms with exposure but never a full blown episode since we started it in Feb. If there are so many health risks with Zith is it really the best? What report dopeople bring to their Dr. when trying to get Zith for their kids?

 

.

 

In my case I didn't bring a report. My daughter had been on zith in the past and her doctor believed me when I told him that we saw the most improvement on zith. He was hesitant. We tried penVK and while she was on that she got a sinus infection (with a feint positive rapid strep result-the culture came up negative). We saw a different practitioner w/in the same practice for that, since it was a same day appt. That doctor said to stop the penVK and gave us a script for omnicef, which did help, but caused tumm aches...We saw her regular pediatrician @ 3 days later and he said we could quit the omnicef because "three days of that should have killed anything she had anyway". That was when I asked him about zith, not because of info from online, just because I had seen that it was what worked best. But, if omnicef is working for you and not causing side effects...if it ain't broke, don't fix it! If you're curious as to whether zith might work better, ask the doctor for a one month trial, citing the anti inflammatory properties (anybody who prescribes antibiotics should be familiar with that).

[curiousmom]

We didn't try to get any RX for our daughter. We never heard of PANDAS until I mentioned she had strep often and had heard that there was a correlation with OCD's. The Dr. is the one who recommended the Zith from the start, but I am still curious if others have used the 5HTP which he also prescribed.

[michele]

We did have 5HTP suggested from the DAN! (biomedical Dr.) We did use it for awhile with the Pen VK. The problem was it wasn't helping with the emotional liability.

 

Michele

We didn't try to get any RX for our daughter. We never heard of PANDAS until I mentioned she had strep often and had heard that there was a correlation with OCD's. The Dr. is the one who recommended the Zith from the start, but I am still curious if others have used the 5HTP which he also prescribed.