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Biaxin updates?


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Awhile ago I inquired about using echinacea and someone said they were told it is an immune booster and may not be a good idea to take with an autoimmune disorder. I quickly looked it up and did see some people (not PANDAS) who had an autoimmune disorder did have flare ups after using echinacea.

 

So, as is the case with any med or any natural supplement, keep a close eye on things and if you see red flags perhaps stop taking them.

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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

 

And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiety? Sounds benign but they really can help.

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Awhile ago I inquired about using echinacea and someone said they were told it is an immune booster and may not be a good idea to take with an autoimmune disorder. I quickly looked it up and did see some people (not PANDAS) who had an autoimmune idsorder did have flare ups aftre using echinacea.

 

I saw that, too, Vickie and Gat would normally be not be considered immune compromised but I will say that when, now and historically, we've done things some small moves to strengthen his immune system he doesn't show any worse for the experience. So far, we've had no negative backlash from the echinacea and OLE (except the occasional burp back taste) but we're only on day 4 of it. OLE started a few days before.

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I know you probably posted this somewhere, but did he have a flare in symptoms first as a result of possible die off? I need to just start a poll abut mycro P kids and what they experienced.

 

 

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?

 

Within 3 days for us and Gat is IgM and IgG positive.

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PANDASkid,

 

Hi. If you wouldn't mind, I am wondering how old you are, how much you weigh, and what dosing of the different antibiotics you were on.

 

I am so sorry you are going through this, but so glad you posted.

Hang in there!

 

Colleen

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I know you probably posted this somewhere, but did he have a flare in symptoms first as a result of possible die off? I need to just start a poll abut mycro P kids and what they experienced.

 

 

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?

 

Within 3 days for us and Gat is IgM and IgG positive.

 

I view the cough he was having as a die off or herx to the biaxin but the stomach stuff was really unlike what I'd expect to see in an abx driven die off unless it was treating an infection of the gut. We couldn't have carried on any longer at that particular time even if it was die off without some sort of mood stabilizing meds and serious pain meds for the gut (which would have brought about another whole set of probs). As I've said, I would LOVE to see him give it 7-10 more days on the biaxin XL but I can shove them down his throat. We are seeing good things now and I credit the week of biaxin complemented by what we're able to get into him now.

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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

Thanks, and so glad you are seeing the same.

We had a setback today, and I'm kind of down. But, I understand I should be looking for a sawtooth effect here - waxing and waning kind of recovery. Up until today, things were really really remarkable. Today, unfortunately, the old patterns of behavior took hold while I had her out shopping. "I'm NOT going to First Holy Communion. Do NOT buy me a dress.. I HATE GOD!!" right in the middle of Macy's... Believe me, at this point, I really don't even care what other people think.. but I hate that feeling of old wounds being ripped right open. Just when you think you are on the road to recovery, BAM, you are reminded that this is a fierce and fiery illness, not submitting easily. Sigh.

I remain hopeful, just had to vent.... thx Noelle

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PANDASkid,

 

Hi. If you wouldn't mind, I am wondering how old you are, how much you weigh, and what dosing of the different antibiotics you were on.

 

I am so sorry you are going through this, but so glad you posted.

Hang in there!

 

Colleen

 

Colleen

 

I am 16 years old, turning 17 on the 24th and before the steroids weighed around 135lbs. and now I weigh 184lbs. My mom threw away all my older perscription bottles because she hates looking at them but I found my most recent ones and they are: amox/clv 875mg x2 daily for 1 month; Biaxin 500mg x1 daily for 14 days; Zithromax 250mg x2 twice weekly longterm. Hope this helps. I also had walking pneumonia a couple weeks ago so I did a much stronger course antibiotics during that but I dont remember how much or for how long or what type.

 

PANDASkid

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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

 

And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiety? Sounds benign but they really can help.

 

Gatsmom,

 

Thanks for the advise! I've been drinking lots of milk and have alot of yogurt. I was on probiotic supplements too but have stopped taking all my supplements cause they hurt my stomache. My mom loves the herbal and natural approaches and also encourages me to take epsom salt baths but I have extreme difficulty with things like showers and baths as well as brushing my teeth. Normally I am very clean and like to look nice but I cant keep that up when Im sick. Any advice on that front?

 

Thanks,

PANDASkid

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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

Thanks, and so glad you are seeing the same.

We had a setback today, and I'm kind of down. But, I understand I should be looking for a sawtooth effect here - waxing and waning kind of recovery. Up until today, things were really really remarkable. Today, unfortunately, the old patterns of behavior took hold while I had her out shopping. "I'm NOT going to First Holy Communion. Do NOT buy me a dress.. I HATE GOD!!" right in the middle of Macy's... Believe me, at this point, I really don't even care what other people think.. but I hate that feeling of old wounds being ripped right open. Just when you think you are on the road to recovery, BAM, you are reminded that this is a fierce and fiery illness, not submitting easily. Sigh.

I remain hopeful, just had to vent.... thx Noelle

 

 

Hang tight. We had one day like that about 5 days ago and the next day she was back to her improved self. If Advil helps, maybe try to up it if she gets like that again?

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When my son first started taking probiotics, he would have diarrhea and vomiting. We would stop the probiotic, he would be fine, start it back and well, the whole thing would start over so we knew it was the probiotic (can't remember the name). Our new dr said we should try one with more of a variety of strains and my son has been fine on it for the past 6 months. Have you tried different ones? We do a probiotic and S. boulardii while on an antibiotic bc we've had so many gut problems in the past.

 

 

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

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PANDASkid - thanks so much for your post. My son is 14, and just reading your post made me want to give you a big hug - I'm so sad you are going through this but please know you are not alone! I hope you can get that IVIG SOON and that it truly helps. My son has gained a lot of weight from Risperdal, and I know he hates it, along with all the other side effects. Keep us posted if you find anything that is helping you.

 

 

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.

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Hi, PANDASkid:

 

Our son will be 14 soon and has been battling PANDAS for 3 years. During exacerbations, he could not shower or brush his teeth for many months. Since IVIG treatment and high-dose augmentin XR, those problems have vanished and he does both with no problem now. Hang in there: with the right treatment and antibiotic, you'll overcome those obstacles!

 

BTW: Just wanted to welcome you and compliment you on the maturity and clarity of your posts. I'm amazed - our son is very bright, but until treatment, he simply could not express himself coherently. You're an inspiration!

 

 

Gatsmom,

 

Thanks for the advise! I've been drinking lots of milk and have alot of yogurt. I was on probiotic supplements too but have stopped taking all my supplements cause they hurt my stomache. My mom loves the herbal and natural approaches and also encourages me to take epsom salt baths but I have extreme difficulty with things like showers and baths as well as brushing my teeth. Normally I am very clean and like to look nice but I cant keep that up when Im sick. Any advice on that front?

 

Thanks,

PANDASkid

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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

 

And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiety? Sounds benign but they really can help.

 

Gatsmom,

 

Thanks for the advise! I've been drinking lots of milk and have alot of yogurt. I was on probiotic supplements too but have stopped taking all my supplements cause they hurt my stomache. My mom loves the herbal and natural approaches and also encourages me to take epsom salt baths but I have extreme difficulty with things like showers and baths as well as brushing my teeth. Normally I am very clean and like to look nice but I cant keep that up when Im sick. Any advice on that front?

 

Thanks,

PANDASkid

 

Wow, you are beautifully articulate for your age! How about a foot soak with epsom salts and working your way slowly up to a bath? One tiny step at a time. I wake my 16 year old up very early in the morning (like 4am) to take his probiotics, he's up for 30 seconds and rolls over and goes right back to sleep. They are long digested before he wakes up for good. I wonder if that might help with any stomach upset. My son has a very, very sensitive stomach when he's in a PANDAS exacerbation. Maybe run that trick by your mom and see what she thinks and start slow with your dosing. My son skipped early a.m. probiotics for the past two days because he had a friend at the house overnight (a miracle in itself) and woke today with stomach pain and a brown tongue all over again.

 

You hang in there and good job being so proactive in your recovery!

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