tired mom Posted April 1, 2010 Report Share Posted April 1, 2010 We finished a month course of Biaxin with some promising results and after a few days without it things seem to heading downward. Last night was bad. While on the Biaxin the swearing was almost completely gone as were alot of other symptoms... until yesterday. My daughters most recent bloodwork showed extremely high IGM and IGG levels for myco. I don't know where we are going from here. My son has been coughing lately with no other symptoms but I am beginning to wonder if he is some kind of carrier. My daughter was treated for the myco back in the fall which makes me wonder what her levels were then (we only had a positive on the bloodwork). Anyone else finish the Biaxin course? What is the next step?? Link to comment Share on other sites More sharing options...
Suzan Posted April 1, 2010 Report Share Posted April 1, 2010 I would think you need to stay on the biaxin longer and monitor the myco numbers but of course I really don't know. I am sorry you are going through this! Can you request more biaxin? susan Link to comment Share on other sites More sharing options...
Fixit Posted April 1, 2010 Report Share Posted April 1, 2010 We finished a month course of Biaxin with some promising results and after a few days without it things seem to heading downward. Last night was bad. While on the Biaxin the swearing was almost completely gone as were alot of other symptoms... until yesterday. My daughters most recent bloodwork showed extremely high IGM and IGG levels for myco. I don't know where we are going from here. My son has been coughing lately with no other symptoms but I am beginning to wonder if he is some kind of carrier. My daughter was treated for the myco back in the fall which makes me wonder what her levels were then (we only had a positive on the bloodwork). Anyone else finish the Biaxin course? What is the next step?? I am stopping biaxin...day 35...it may have helped but the real one that worked was the aug ....but he is still having joint pain... yeaterday vocals and tics were back up 72 hours after last dose..... it may take a week to work all the toxins out...he wakes up in greata pain, screaming and cryig......but it gets better as the day gose on.... Thing is, the aug seemed to really do the trick....i mean he was down 80% !!!! OR was that because the aug was making him sick?!?!? Or is that the calming effect of aug and why it works?!?!?!?! anyone have thoughts on that.. started azith last night...i guess we will see.... I would think if the biax worked,and if you are seeing any of the doctors we love here,....that they would refilll.... especiall the marked progress and marked backslide timed with the abx Link to comment Share on other sites More sharing options...
tired mom Posted April 1, 2010 Author Report Share Posted April 1, 2010 We are going to see Dr. T in a couple weeks again but I don't know what to do with the gap inbetween. My daughters family doctor does not want to run the bloodwork for a couple more weeks. She has been good to us but I really don't think she knows the severity of this disorder and how it impacts a family...Sigh.. Link to comment Share on other sites More sharing options...
thereishope Posted April 1, 2010 Report Share Posted April 1, 2010 So, is your daugher on any antibiotics right now?Have you asked the ped for a refill based on PITAND/PANDAS symptoms alone? As for your son, has he been to the doctor for that cough? If not, I suggest taking him in. My non-PANDAS son only symptom was a cough. Remind the doctor that Myco P is contagious with a lag in between catching it and symptoms surfacing. If they give you a speech about why they think he doesn't have it, ask them if you can just rule it out with a script of Zith. That cleared my non-PANDAS son of it. He did cough for about a week after finishing the meds but the ped said that is expected. Link to comment Share on other sites More sharing options...
tired mom Posted April 1, 2010 Author Report Share Posted April 1, 2010 So, is your daugher on any antibiotics right now?Have you asked the ped for a refill based on PITAND/PANDAS symptoms alone? As for your son, has he been to the doctor for that cough? If not, I suggest taking him in. My non-PANDAS son only symptom was a cough. Remind the doctor that Myco P is contagious with a lag in between catching it and symptoms surfacing. If they give you a speech about why they think he doesn't have it, ask them if you can just rule it out with a script of Zith. That cleared my non-PANDAS son of it. He did cough for about a week after finishing the meds but the ped said that is expected. Right now no antibitics. Dr. T ordered the first script and I am expecting to hear from him soon before appt. I did have my son to Dr. about 10 days but she did not feel he needed an antibiotic. She is not in on Thurs. so I am calling first thing tomorrow. She told me the last time I was in she needed a letter from Dr. T before she would run any more tests. I think because she is the only one in her group who treats Pandas/Pitands she is being questioned about prolonged antibiotics. Although I can get a script from Dr.T filled she needs to write all bloodwork so insurance covers. WAS your son positive for myco? Link to comment Share on other sites More sharing options...
simplygina Posted April 1, 2010 Report Share Posted April 1, 2010 We finished a month course of Biaxin with some promising results and after a few days without it things seem to heading downward. Last night was bad. While on the Biaxin the swearing was almost completely gone as were alot of other symptoms... until yesterday. My daughters most recent bloodwork showed extremely high IGM and IGG levels for myco. I don't know where we are going from here. My son has been coughing lately with no other symptoms but I am beginning to wonder if he is some kind of carrier. My daughter was treated for the myco back in the fall which makes me wonder what her levels were then (we only had a positive on the bloodwork). Anyone else finish the Biaxin course? What is the next step?? I'm wondering the same thing. Plus, I don't know when to say we're finished. We are at day 25 or so with 1 more 10 day refill which I plan to use. Dr. T. mentioned eventually going to a prophylactic dose, but I don't know if I'm willing to risk it right now. I'd rather wait until May when the weather has dried out a bit and exposure to everything that is still going around is down. We didn't test positive for myco, but the Biaxin has definitely worked well for us. I think we were dealing with intracellular strep. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted April 2, 2010 Report Share Posted April 2, 2010 We ran out of Biaxin last Friday (only a 10 day script) I was seeing a small improvement. DS is doing a lot more compulsions over the last couple of days. We also started Straterra 3 days ago. I see a slight, slight improvement in focus but more compulsions. I don't know if it is from stopping the Biaxin or starting the Straterra. I would like to try the Biaxin and Straterra at the same time. DS was on Augmentin, Sammy dose for 6 weeks before T&A is December, without any improvement. I wonder if now that the tonsils are gone if we should revisit the Augmentin. We finished a month course of Biaxin with some promising results and after a few days without it things seem to heading downward. Last night was bad. While on the Biaxin the swearing was almost completely gone as were alot of other symptoms... until yesterday. My daughters most recent bloodwork showed extremely high IGM and IGG levels for myco. I don't know where we are going from here. My son has been coughing lately with no other symptoms but I am beginning to wonder if he is some kind of carrier. My daughter was treated for the myco back in the fall which makes me wonder what her levels were then (we only had a positive on the bloodwork). Anyone else finish the Biaxin course? What is the next step?? I'm wondering the same thing. Plus, I don't know when to say we're finished. We are at day 25 or so with 1 more 10 day refill which I plan to use. Dr. T. mentioned eventually going to a prophylactic dose, but I don't know if I'm willing to risk it right now. I'd rather wait until May when the weather has dried out a bit and exposure to everything that is still going around is down. We didn't test positive for myco, but the Biaxin has definitely worked well for us. I think we were dealing with intracellular strep. Link to comment Share on other sites More sharing options...
tired mom Posted April 2, 2010 Author Report Share Posted April 2, 2010 We ran out of Biaxin last Friday (only a 10 day script) I was seeing a small improvement. DS is doing a lot more compulsions over the last couple of days. We also started Straterra 3 days ago. I see a slight, slight improvement in focus but more compulsions. I don't know if it is from stopping the Biaxin or starting the Straterra. I would like to try the Biaxin and Straterra at the same time. DS was on Augmentin, Sammy dose for 6 weeks before T&A is December, without any improvement. I wonder if now that the tonsils are gone if we should revisit the Augmentin. We finished a month course of Biaxin with some promising results and after a few days without it things seem to heading downward. Last night was bad. While on the Biaxin the swearing was almost completely gone as were alot of other symptoms... until yesterday. My daughters most recent bloodwork showed extremely high IGM and IGG levels for myco. I don't know where we are going from here. My son has been coughing lately with no other symptoms but I am beginning to wonder if he is some kind of carrier. My daughter was treated for the myco back in the fall which makes me wonder what her levels were then (we only had a positive on the bloodwork). Anyone else finish the Biaxin course? What is the next step?? I'm wondering the same thing. Plus, I don't know when to say we're finished. We are at day 25 or so with 1 more 10 day refill which I plan to use. Dr. T. mentioned eventually going to a prophylactic dose, but I don't know if I'm willing to risk it right now. I'd rather wait until May when the weather has dried out a bit and exposure to everything that is still going around is down. We didn't test positive for myco, but the Biaxin has definitely worked well for us. I think we were dealing with intracellular strep. What was the Sammy Does of Augmentin? We did Augmentin for a month with no positve results at 1000mg a day. The biaxin worked quickly but there were a few bad days here and there . Link to comment Share on other sites More sharing options...
EAMom Posted April 2, 2010 Report Share Posted April 2, 2010 I think iSammy was on 1000mg 2x daily (he was about 100 pounds) for about 1 year. Then he went to a lower dose for another couple of years. Link to comment Share on other sites More sharing options...
Worried_Dad Posted April 2, 2010 Report Share Posted April 2, 2010 (edited) Yep, Sammy did 1000 mg of XR twice daily for a year, then 3 more years of 1000 mg daily (not sure if it was once a day or 500 mg twice daily). He goes back on the high-dose for a shorter duration now if he feels symptoms coming on. I think iSammy was on 1000mg 2x daily (he was about 100 pounds) for about 1 year. Then he went to a lower dose for another couple of years. Edited April 2, 2010 by Worried Dad 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