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Posted

When we first went on azith we did the 500mg first day then was prescribed 250mg for 5 days - since he was improving so much we continued at that dose for about 12 days (school was starting up too) we then went to the 500mg every 5th day. good luck

Posted
Finally the Dr. agreed to try antibiotic therapy.He prescribed 250 mg. of Zithro for 30 days.Any one else tried this?

 

We were on omnicef for 21 days once...it hurt Allie's tummy.

 

Please be very careful. Zith builds up in your tissues and has the ability to damage your liver, which is why so many docs are hesitant to use it prophilactically.

Posted

Kim,

Thanks for the good article highlighting Azithwith chronic fatigue. I just wish they would write one specific to PANDAS. I know every Dr. I've seen has been against it in the NE because of resistance. Do you think showing this article would help convince them to try it for our kids immune issues? You think it should react in a similar way for our PANDAS cases? Kim as usuall you are a big help.

 

Michele

Michelle/all

 

I know you are always on the lookout for Azith articles. Don't know if you have this one, or if it's something that would be useful to take to your Dr? That "acetylcarnitine" seems to pop up in more than one place too.

 

 

http://www.pubmedcentral.nih.gov/articlere...i?artid=1562448

 

Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data

Posted

Our 8 year old daughter's dr. just prescribed her with zithromax and 25mg of 5-HTP each night for 2 weeks. It's been one week, and I have not seen any huge change in her behavior. I took her to our dr. after she began out of the blue exhibiting ocdish behavior, blinking, joint cracking, separation fears. The blood sample he took showed an elevated level of (???) triple the norm which lead to the PANDA diagnosis. Has anyone else heard of the combination of 5-HTP and the Zithromax? About how long after the rx treatment began did you see changes?

Thanks!

Posted

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.

Posted

Please post the link if you can. I am interested what antibiotic did Murphy's assistant suggest or prescribe? They did not prescribe any for us.

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.
Posted
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.

 

 

Interesting. My daughter does not tic (I think), we see improvements in OCD behaviors and mood w/in a few hours of zithro dosing.

Posted

Thank you. Yes we are fortunate to have a progressive Dr. I will be taking our daughter for a follow up in 2 weeks, and then she will get another blood test to see where her levels are. I don't see her blinking as much. I'm wondering though... one of the symptons she exhibits is worrying about all types of stuff. I can't see that type of symptom being cut off cold turkey, more of a gradual change that may take awhile to ease itself away.

Posted

Sorry, I am still trying to figure it out. I thought it would be a website, yet the assistant emailed it to me with pdf attachment. I really doesn't say anything new and kind of talks about the negatives of antibiotics. I only talked to her on the phone and she did not say which antibiotic only that to call if I want my son to meet with Dr. Murphy.

Posted

My son is still scared of things too. He worries about getting hurt ie. bike riding, jumping from swings, bees, hard balls. It may just be his personality. My non PANDAS daughter is scared of things too. He is definately better on comuplsions while on antibiotics and Abilify though. He gets over things doesn't dwell on them as much, and is less emotional. The gross and fine motor is still delayed. We are trying to build up body and hand strength with exercises. Do others have these issues too? His handwriting and spatial organization are not too good. He won't cross over his midline.

 

 

Michele

Thank you. Yes we are fortunate to have a progressive Dr. I will be taking our daughter for a follow up in 2 weeks, and then she will get another blood test to see where her levels are. I don't see her blinking as much. I'm wondering though... one of the symptons she exhibits is worrying about all types of stuff. I can't see that type of symptom being cut off cold turkey, more of a gradual change that may take awhile to ease itself away.
Posted

My son has a little of some of these things mildy- poor handwriting, but readable. Worrier, but not OCD or anxiety. Inattentive and borderline ADD, but doesn't cause him trouble. Yet, when the tics hit he tics almost every second. I just can't figure that one out. There are weeks when he is tic free and then wham, every second. Do your kids tic that much or is it here and there?

Posted

Peglem, What dose of zith are you using, and on what schedule? Do you do testing re: the build-up of zith? We have been using about 6-8 weeks now, but our doctor is concerned about long-term use, and would like us to go back to Pen VK.

Posted

Allie does 250mg/day of zith for 5 days, then takes 7 days off...then repeat, repeat, repeat. We run a liver panel @ every 3 months just to make sure there's no harm being done there. She was on daily penVK for @ 3 months before we switched her to zith. Zith had always worked well for her in the past, she just wasn't on it prophilacticly before. The only problem with this schedule (the 5/7 day thing) is that her behavioral stuff starts coming back on @ day 4 off and by day 7 off she's not doing very well at all. Her doctor was actually glad to hear that, because it indicates that the zith is being cleared completely before she goes back on it. She used to be on weekly diflucan, for yeast, but we've recently switched to 3x/day of nystatin, which seems to be working better. And since we've added the bethanechol, haven't really seen any behavioral outbursts until day 7 off zith. So, right now here's what she's on, in addition to the zith schedule: 3x/day nystatin, 3x/day bethanechol, 2x/day lamictal (for seizures). It took us (her doctor and I ) a long time to come up with this combo which, finally seems to be working well for her. My baby was awfully miserable for an awfully long time while we tried to figure it all out. Oh, yeah, every couple of days I give her S. Boulardii, to put back the good yeast that is killed off by the nystatin, and of course she gets a daily probiotic.

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