Biaxin updates?

[wornoutmom]

Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

[colleenrn]

Was your child on any antibiotics prior to finding out the myco pneumo? If my kids on on daily zithromax, do they still need to be tested for it? I posted that question to Dr. T on his new site, but he has not answered it. Has anyone on zithromax still tested positive for mycoplasma pneumo?

TIA!

Colleen

[tired mom]

Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

Well we are on day 10 today and I just went to the pharmacy for a refill. I was a little nervous in the beginning because we had a little episode on day 5 but after that (I don't want to jinx myself) I have noticed a change. Things are much calmer now. My daughter also admitted to feeling better and it has helped her anxiety. Hope it works for your son. Good Luck!

[earnestfamily7]

Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

 

I hope things are beginning to improve for your son. My DD7 and DS9 both tested neg for mycoplasma ... just got the results back 2 days ago. DD was .71 (<.91 ISR)... DS was .41 on same scale.... they both had high IGE numbers (the unit that measures allergies/allergic reactions)... My kids also do not register high titers w/active strep infections... they do elevate just not much.... maybe a connection? maybe not? My kids have been on Zith since 2/13/10 and my daughter is improving... saw great improvements on steroid (5day) on days 2-5.... lots of gains on the antibiotic.... I remain forever hopeful and forever thankful for Dr. T and those like him!

 

I hope the PetScan goes well - thinking of you

Steph

[GatsMom]

Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

 

My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG.

 

We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast.

 

Hope that helps,

Gat's mom

[melanie]

[

 

Day 4 on Biaxin and things are good.Last week was heck.Horrible he was on minocycline.Im not sure what it is but hes really great right now.Hes been talking about going to college(never heard that before)He wants to be an actor.Hes just been very nice.Hes taking 1000 mg biaxin xr his stomach hurt a bit yesterday so I broke the dosage today into 2 about 1 hour apart seems to be fine.Im giving him lots of asadopolis(sp) .

 

Melanie

[thereishope]

How are your children's PANDAS symptoms? This is just my opinion, if their symptoms are in check, I would think you do not need to test. It seems like most who are finding out their children have Mycroplasma are those who are not seeing improvement or could not figure out why PANDAS surfaced in the first place since strep was not the culprit.

 

 

 

 

 

Was your child on any antibiotics prior to finding out the myco pneumo? If my kids on on daily zithromax, do they still need to be tested for it? I posted that question to Dr. T on his new site, but he has not answered it. Has anyone on zithromax still tested positive for mycoplasma pneumo?

TIA!

Colleen

[thereishope]

How did you know it was affecting his gut?What symptoms should others look out for?

 

 

Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

 

My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG.

 

We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast.

 

Hope that helps,

Gat's mom

[simplygina]

Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

 

We tested negative. .01 Igg and .07 IgM. I was really surprised. After talking with Dr. T and discussing how much worse DS gets when he is sick, he still felt like a trial of Biaxin was in order so we start tomorrow. I will have to tell DS about the cough. I hope his tummy can take it. He's done well both on Omnicef and Augmentin, but after being on a month of abx, I'm worried it will affect it. I've got him taking a high dose probiotic twice a day, hope that's helping. He really likes kefir, so I will keep giving him that as well.

 

I'm hoping for quick results as well. This week has had me in tears far too many times.

[melanie]

I cant give danny probiotics I think hes really sensitive to them I need to start a thread about this and see if anyone else has simular symptoms .I knew his stomach hurt because he told me he felt like throwing up.I gave him chewable acidophilis and today I broke the biaxin into 2 parts about 1 hr apart and he seems great

 

Melanie

[kcdc3]

Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

 

We are positive IgG (2.15) (lab scale was anything over .91 positive). We started generic Biaxin on 2/22. We had a terrible time from 2/19 through 2/27. Her tics were out of control and her OCD ramped up considerably. Then, on 2/28 it was like a light bulb came on - her tics went from out of control to next to nothing. Her OCD went down quite a bit. She had great moods. However, this past Wednesday, she started ticcing again - although milder than before the steroid burst and milder than the 2/19 - 2/27 time period. Her OCD went up a little bit on Wednesday - wondering if this is "sawtooth" pattern.....We have definitely seen a greater improvement on the Biaxin than we have on anything else in the past. I have not heard any tics today so maybe we are going back in the right direction again. (???)

[wornoutmom]

Our script reads for 500 mg generic BiaxinXL 500 mg - 2 tablets in the morning. My son is balking at the size of these pills. Does anyone know if cutting them in half will affect the time release?. And would it work to give it 12 hours apart (one a.m. and one pm) instead of 2 in the morning, to help with any gut issues? Seems like I saw people giving Augmentin xr twice a day? Anyone know? Maybe I should call the pharmacy?

[melanie]

Our script reads for 500 mg generic BiaxinXL 500 mg - 2 tablets in the morning. My son is balking at the size of these pills. Does anyone know if cutting them in half will affect the time release?. And would it work to give it 12 hours apart (one a.m. and one pm) instead of 2 in the morning, to help with any gut issues? Seems like I saw people giving Augmentin xr twice a day? Anyone know? Maybe I should call the pharmacy?

 

Again Im not giving it to danny in the am Dr T did write that but I dont think it matters He did say make sure you eat with it,I give it at dinner 5 pm 1/2 at 5 and 1/2 around 5:30 -6 he definitly seems better no sign of a stomach ache .But hes almost 140lbs .Try that .I dont know if you can cut them but they are quite large.Hes ok with the size .Looking at them makes me gag.

[smartyjones]

We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support.

Hope that helps,

Gat's mom

 

 

gat's mom - would you be willing to share what your doing with all naturals?

thanks.

[momaine]

I've thought about updating the board but didn't want to jinx us. ;P I've also been wondering how the rest of the Biaxin kids were doing. Thanks for the updates. Sounds positive, overall.

 

Dd did a steroid burst a couple weeks ago and I am still not sure if the benefits we are seeing are from the prednisone or the Biaxin xl, but as more time goes by, I'm leaning toward the Biaxin.

 

The first steroid burst she had, gave her good results of days 13-18 following the burst. (6 day burst, tapering dose)

 

The second steroid burst (40mg no taper for 5 days) was one week before starting BIaxin. Coincidentally, (or not) the day she started Biaxin, her OCD symptoms diminished considerably. She went form needing me to watch EVERY bite she ate, to eating 95% independently, even going to get her own food. She also has begun to eat a slightly larger variety of foods. Her reassurance questions have gone WAY down and almost everything seems to be a bit easier.

 

We are on day 13 now of BIaxin XL. (generic) 12 out of the last 13 days have been the best in a long, long time. 3 days ago, she had a very difficult day and I thought perhaps the steroid was wearing off and that the benefits may have been only from the steroids. But the next two days were good days again. (last time when the steroids wore off she declined steadily) Today is the 3rd day following that bad day and this morning has started out with some difficulties (and some positive things too) so I'm worried again, but we'll just wait and see.

 

Wish I could be more certain of the cause of her improvement, but I'm just glad she's improveing. Maybe its the combination of both therapies? It's given me a lot of hope.

 

Angela