Biaxin updates?

[GatsMom]

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

 

That's a great report, Angela! Good for you and your family.

[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

 

Vickie: His stomach was killing him ALL the time, not just when he was anxious. His acid reflux was out of control, waking every morning with a brown tongue. Omeprazole 20mg at bedtime wasn't even denting it, neither did propping his pillows and his mattress. Non-complex foods, tons of homemade soups didn't help either. He ate as little as possible and weight was falling off him.

 

Smartyjones: I'll preface by saying, I'd rather be doing biaxin...what we're doing now is really plan B.

*Myco control: echinacea and olive leaf extract

(we have a middle school history of good results with OLE for ocd behaviors. this was before we knew about myco, which i believe he had in middle school, too. the autism world just related OLE for ocd behaviors. upon researching i found it helpful for myco which is likely the connection in my son.)

*Inflammation (gut & brain): omegabrites. Have ordered Enhansa and it should arrive within a day, will be starting very low and slow.

*Immune support: Vit C and zinc (as well as omegabrites, echinacea & OLE)

*Sleep support: Epsom salts baths nightly, melatonin 5mg lozenges

*Adrenal support: Drenatrophin PMG (Just started product yesterday suggested by our herbalist...she also started me on one)

*Gut support: Klaires Therabiotic Detox Support probiotics (100 bil per day), omeprazole 20mg at bedtime, yogurt, kefir

 

Most of the above were in place before he boycotted biaxin and would stay in place if he retries it. I do feel a multisystem support plan is needed for these kids. Their bodies are under so much strain.

[momaine]

Oh, and I meant to mention that dd had been on Augmentin XR for 3 months and Zith for two months when she tested positive for mycoplasma.

 

Angela

[ilovedogs]

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

May I ask what naturals you are using to treat instead of the Biaxin? I am currently on Biaxin for a sinus infection but have asked the doc to switch me to a Z-pack b/c of the stomach pains, diarrhea, and headaches I've been having. I am on day 4 and I just can do no more! I am taking heavy duty probiotics and a probiotic drink as well as trying to keep my diet simple ie; pasta, rice, sourdough bread, etc.

By the way, I'm usually on the tics/tourettes side as my son has a tic disorder and I will possibly be looking into PANDAs if he has another episode like he had last fall. He had some bedwetting, sleep disturbances, and major anxiety. It's taken me until now to realize that we might have a mild case of PANDAs going on. What I can't understand is that he's so normal otherwise except for the tics. OK: how did I get off topic, LOL!???? Anyway, if you can provide me with info. for cleaning up an infection naturally, I'd love to hear about it!

Thanks,

Bonnie

[nomoz]

My daughter has been on Biaxin for almost two weeks (for Micoplasm - her IGG's were crazy high at 5) and is doing remarkably well.

When I see her belly laugh, ahhh.. to me, that is bliss.

And she is doing that very often.

It's remarkable.

She'll be tested again over the next few days to see where IGG's are, among other things, and I'll keep you posted!

[thereishope]

So, what seems to be the timeline for Biaxin and Mycro P? How long did it take everyone before they saw signs of improvemnt and realized it was working?

[momaine]

So, what seems to be the timeline for Biaxin and Mycro P? How long did it take everyone before they saw signs of improvemnt and realized it was working?

For us, there was a remarkable difference on day one, but that was also day 7 after a steroid burst (last steroid burst I saw improvement on day 13, but it was a lower dose the first time) so though it's hard to say for sure, it seems to me, it may very possibly have been the biaxin that made the difference.

 

Angela

[momaine]

My daughter has been on Biaxin for almost two weeks (for Micoplasm - her IGG's were crazy high at 5) and is doing remarkably well.

When I see her belly laugh, ahhh.. to me, that is bliss.

And she is doing that very often.

It's remarkable.

She'll be tested again over the next few days to see where IGG's are, among other things, and I'll keep you posted!

 

Nomoz,

Yay! So glad to hear you are seeing improvement too.

 

Angela

[melanie]

sINCE THE BIAxin started things have been good.Last night I saw some big time oCD stopping by.When dannys ocd strikes its bad stuff like hitler or Osama BIn crap usually the worst of the worst.Then he seems to try and get the thoughts out of his head with something good .Righgt now its Michael Jackson(if u can say thats good).Then he gets angry for a while and then its gone.So weird to watch it.These episodes are way shorter then the used to be.Anyway its a new day and we will see.

 

What to do after the 10 nday script is up.

Ill email Dr T and see what he thinks

 

Melanie

[thereishope]

Melanie, could be be turning back the pages? Wasn't the Michael Jackson thing an older OCD thought?

[melanie]

Melanie, could be be turning back the pages? Wasn't the Michael Jackson thing an older OCD thought?

Danny usually keeps OCD stuff a while.Thats the autism thing I guess.What I mean is the Intrusive thoughts then he will say to himself (insteas of thinking about the bad stuf) Michael Jackson over and over .Like if hes trying to get the thought out of his head.

 

When you say turning back the pages is that bad or good?

 

Melanie

[pandaskid]

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???

 

wornoutmom,

 

I was on Biaxin for ten days with no results. I have also been on zithromax for 3 months with no results and augmentin for 1 month also with no result. I got my blood tests back yesterday. I had "highly significant" levels of mycoplasma pneumoniae as well as an IgG 1 subclass deficiency. I also recieved my CamKinase II results back in November at the level of 200. The only relief I have had from my symptoms was from a 5 day burst of steroids and a month long course of steroids. I gained about 4 weeks of my life back but they wore off about 1 month ago and my life has gone down the toilet again. I dont want to go back on the steroids because the side affects are so awful. My stomache is now in a wreck from all the pills I've taken. I am now on tylenol-codine for my physical pain as well as advil. We're going for an IVIG but insurance has denied it, but hopefully since we found this subclass deficiency I can finally get it. Hope this helps.

 

PANDASkid.

[Fixit]

I was on Biaxin for ten days with no results. I have also been on zithromax for 3 months with no results and augmentin for 1 month also with no result. I got my blood tests back yesterday. I had "highly significant" levels of mycoplasma pneumoniae as well as an IgG 1 subclass deficiency. I also recieved my CamKinase II results back in November at the level of 200. The only relief I have had from my symptoms was from a 5 day burst of steroids and a month long course of steroids. I gained about 4 weeks of my life back but they wore off about 1 month ago and my life has gone down the toilet again. I dont want to go back on the steroids because the side affects are so awful. My stomache is now in a wreck from all the pills I've taken. I am now on tylenol-codine for my physical pain as well as advil. We're going for an IVIG but insurance has denied it, but hopefully since we found this subclass deficiency I can finally get it. Hope this helps.

 

PANDASkid.

 

thank you for posting

 

were you on a high enough dose for your weight?

 

i believe aug wouldn't help at all...zith might, but i not sure if you were on biaxin long enough,depending on how long you had this and your current age..

from what i understand looking at the one study...they did 2 months of abx...and some say 6 months or longer and you may want to rotate other abxs

 

i also understand you may now have some other underlying issues...

 

keep in touch

[thereishope]

The majority of kids that have gone through IVIG have "turning back the pages". I'm sure you've read about it before. When old OCD habits, old behaviors, old tics that the child used to have resurface during recovery. Like pressing the rewind button and watching it rewind. Interestingly, my son, who did not do IVIG, kind of followed this during recovery as well at times. I would see how "turning back the pages" can be scary, but it also may be a sign that recovery is happeneing and good things are coming. I've comared recovery before as watching a computer defrag. Have you ever watched that on your computer? To the human eye it is confusing and things are being moved around at a very fast pace. But eventually it all gets put back in the correct spot and order and the computer then moves faster and is better than before.

 

 

[

When you say turning back the pages is that bad or good?

 

Melanie

[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

May I ask what naturals you are using to treat instead of the Biaxin? I am currently on Biaxin for a sinus infection but have asked the doc to switch me to a Z-pack b/c of the stomach pains, diarrhea, and headaches I've been having. I am on day 4 and I just can do no more! I am taking heavy duty probiotics and a probiotic drink as well as trying to keep my diet simple ie; pasta, rice, sourdough bread, etc.

By the way, I'm usually on the tics/tourettes side as my son has a tic disorder and I will possibly be looking into PANDAs if he has another episode like he had last fall. He had some bedwetting, sleep disturbances, and major anxiety. It's taken me until now to realize that we might have a mild case of PANDAs going on. What I can't understand is that he's so normal otherwise except for the tics. OK: how did I get off topic, LOL!???? Anyway, if you can provide me with info. for cleaning up an infection naturally, I'd love to hear about it!

Thanks,

Bonnie

 

Hi Bonnie,

 

The echinacea was the suggestion of our herbalist after she checked her references for a natural that acts as a macrolide (the biaxin class of antibiotic). The olive leaf extract was my suggestion after I cross referenced her echinacea suggestion online and found almost as much mention of olive leaf as echinacea for myco p. Since we have history a couple years ago of OLE really helping with his ocd behaviors and the two are not contraindicated we are doing both. I will say it again though that the 7 days we had on biaxin definitely did help and possibly set the stage for the naturals coming in and continuing to help. He continues to improve overall daily right now. The occasional moment of panic but they are significantly less than 2 wks ago. I've also been doing a serious amount of reading on inflammatory cytokines and what can be done about them. I'm really excited to be given Enhansa a try starting as soon as it arrives. I firmly believe that the steps we're doing to decrease inflammation are as valuable as anything now that the infection piece seems to be at least stable. Enhansa is our next big assault on the cytokine storm that Dr. T. talks about and my herbalist has been saying for months.

 

Gayle