We can't kill the strep!

[Worried_Dad]

I think our ped will do the Rifampin and the Clinda, Worried Dad, but at this point I am so scared that we won't be able to get rid of it even with that.

 

I can't believe that your wife's titers even rose while on it.

 

Worried Dad, do you feel that you may have actually erradicated it, or do you think it is still there? What is your gut feeling? Our ped has seen 3 babies with chrinic strep (not carriers) take clinda and then get strep again.

 

My gut feel (and fear) is that there is still strep in our household and that one (or more) of us isn't cleared and keeps re-infecting the rest. Guess we'll see what the latest round of ASO titers look like. If you're pretty sure your one dd is the carrier, then it might be worth trying the clindamycin / rifampin combo if your ped is receptive. Wish I had better answers. Will post more when we get the latest ASO and see what the docs want to try next. We also requested Myco p titers for everybody to see if we're dealing with co-infection. So many things to check!

[peglem]

I was thinking Rifampin as well, but does anyone know for sure? Or has anyone done it?

We've used rifampin w/ augmentin for our PANDAS daughter, who, by all indications is a carrier. Couldn't test for strep because she has also been on constant abx, but I can tell you that the rifampin treatment brought about absolutely miraculous cessation of her worst PANDAS symptoms. Now, we may be dealing with something more than strep (we haven't really checked for anything else), because both times we've used it, our miracle faded after 3 months.

 

I did discuss it with her pediatrician just this afternoon- looking for why rifampin is such a miracle, and he did a TB test and we're getting a chest x-ray as well. We can't go by blood tests for IgG because she gets IVIG every 4 weeks. We're hoping to find something to hang our hats on for rifampin treatment because he's been getting crap from his colleagues in the same practice for using this treatment w/o evidence of what he is treating. Never thought I'd be hoping my kid has a positive TB test!

[ajcire]

If your child is getting a strep rash than that doesn't sound like she is a carrier... a strep rash is a strep rash isn't it? I thought a carrier was someone who actually showed no symptoms. My ds cultures positive but doesn't have sore throats or fever. The dr. suspected he might be a carrier but at the same time he does show symptoms... (pandas symptoms, just not classic sore throat symptoms) so I never fully understood... plus when he is given the regular strep dosage course of antibiotics and then recultured later he does test negative. I guess it's not really important what it's called as obviously for some reason she can't seem to get rid of the strep but just was confused as to if that is really considered a carrier?

[fuelforall]

Folks, I wouldn't have suggested it before but honest, get yourself some colloidal silver to keep the strep away. See recent article

 

http://www.montrealgazette.com/health/silver+bullet+common+cold/3687617/story.html

 

My kids went on it and they aren't getting sick(the older one rarely did anyway, but the younger one has been fine since he started and he always got something). The stuff's been around forever. Spend the money on good stuff, silver water tastes just like water.

It can only help, not harm you or kids.

When I went to an alternative practitioner, she said, "Strep is easy to fix" and suggested silver. Will silver stop PANDAS and its symptoms? No. . See silver as a means of illness prevention, not Pandas symptom stifling. As a means of preventing relapses due to infections. Try it before you drive yourself nuts with blood tests, etc.

 

Based on Stephanie's experience, OLE seems to be proof that alternative methods need harder looks on these matters.

 

Good luck.

 

Michael

[philamom]

Folks, I wouldn't have suggested it before but honest, get yourself some colloidal silver to keep the strep away. See recent article

 

http://www.montrealgazette.com/health/silver+bullet+common+cold/3687617/story.html

 

My kids went on it and they aren't getting sick(the older one rarely did anyway, but the younger one has been fine since he started and he always got something). The stuff's been around forever. Spend the money on good stuff, silver water tastes just like water.

It can only help, not harm you or kids.

When I went to an alternative practitioner, she said, "Strep is easy to fix" and suggested silver. Will silver stop PANDAS and its symptoms? No. . See silver as a means of illness prevention, not Pandas symptom stifling. As a means of preventing relapses due to infections. Try it before you drive yourself nuts with blood tests, etc.

 

Based on Stephanie's experience, OLE seems to be proof that alternative methods need harder looks on these matters.

 

Good luck.

 

Michael

Michael- What brand of Silver do you use and how much? Thanks!

[fuelforall]

Michael- What brand of Silver do you use and how much? Thanks!

 

I like this one. Works well, lasts a while.

http://www.amazon.com/Silver-Water-Special-qts-39-75/dp/B000F7QPDO

 

Don't need more than a couple tablespoons a couple times a day to start. Keep it going, then tamp it down a bit if results are good. As Stephanie points out, when she tried to reduce her OLE to twice a day, the problems came back.

A grown man said he takes one ounce a week for maintenance and has never had a cold or anything in 12 years.

But our kids have a lot of bacteria and my healer would say load 'em up.

 

BTW, please do NOT take any products with collodial silver PROTEIN. They are not safe if used too often. (The water does not have this)

 

Again, I also tell people to go to drinklifein.com and look into zija. I feel great because of it. Evens out seratonin levels and so on (they won't say this on the web, but it's very effective for mood swings, now if I can just get my older son to take more!). If you want to sign up for zija, let me know. My whole family is on it.

 

Michael

[FallingApart]

We are back from the Naturopath appt and are going to the ped in an hour.

 

The Naturopath was a little hard for me to follow but I believe she was telling me the following. I wanted her to recognize the underlying infection in our carrier daughter and do something about it. But what happened instead is along the lines of what some of you said. She implied that the carrier daughter's immune system is not strong enough to fight off the infection and we have to build it up before she will be able to rid hrself of the infection. She gave her a remedy for immunity building.

 

For the past few months I've been feeling that she (the ND) thinks I have Munchausen's but today she seemed to get the severity of it. She told me that we are now practicing outside of her comfort zone and that our situation really couldn't get much worse.

 

However, DH and DD missed their flight this morning so we have one more day to try and stabilize this infection before the girls are reunited.

 

I also read some of the info on Lyme and am shocked by how many names I recognize over there. I will definitely bring this up with the ped next.

[matis_mom]

Hello to everyone.

 

I've been away for a long time because each time I read posts I am terrified that all of your situations are going to happen to our family so I had to take a break. But I am back now because I don't know where to turn.

 

In a nutshell, DD4 has had a constant PANDAS exacerbation for almost 2 years. We have been doing IVIG monthly for the past year. We did PEX and it failed. Over the past 6 months(ish) things have started to make sense. Our other daughter is the strep carrier. It seems that erradicating step carriage is not that difficult if a person can take Clindamycin. Our strep carrier daughter is only 3 and was constantly throwing up the Clinda. We put her on daily Augmentin and things calmed down for a while but our daughter got strep even while ON augmentin and re-infected PANDAS DD.

 

Finally after 6 months of trying to get the strep carrier daughter to take Clinda, we were successful. We separated our girls so that PANDAS DD body could have a chance to calm down away from her sister. Shockingly, DD recovered without having to be hospitalized. This has never happened. During the 8 dau separation, I have been giving the strep carrier daughter 3x/day doses of Clinda. Well, last night, she got strep AGAIN!! WHILE ON CLINDA!

 

Can anyone speculate/provide insight here? Our PANDAS daughter is set to come back tomorrow and now there is no way I can reunite them. Why in the world can we not get rid of the carrier state??

 

I can certainly expand on any of these details but I don't want to overwhelm anyone initially. I, myself, am trying to keep an anxiety attack under control!

 

THanks in advance!

FA

What a heartbreaking situation! I would say you need to look at your carrier and see if there is anything up with her. Look into immune deficiencies, absessed tonsils, etc. Even though she is not getting sick *yet* (I hate to say this! sorry!), it's just not normal for her to keep getting strep while on antibiotics. That's probably the last thing you want to hear, but you need to try to find a more permanent solution. Is your younger daughter healthy otherwise? Is there anyone else in the picture that your carrier daughter could be picking up strep from?

Also, are you working with your pediatrician or with an Infectious Disease specialist? Maybe you need to go up a notch.

And, the ever present suggestion these days... have you checked for Lyme Disease? Another thing to check for is mono. I am kind of in the same situation as your daughter in that nothing seems to touch my tonsils. Last month doctor suggested Lyme, this month she is thinking mono? Apparently in certain people it can hang around and suppress your immune system and one of the typical things they see in those cases is that the person keeps getting strep.

The handout she gave me says "there is no treatment for it" and "it resolves on it's own", but I read of people in this forum taking antivirals?

I'm not sure what is up with me but I'm not wasting any more time... I'm seeing an LLMD and hopefully he'll figure it out.

[smartyjones]

. She told me that we are now practicing outside of her comfort zone and that our situation really couldn't get much worse.

 

 

 

falingapart -- did you say previously you were in MD? we had seen a naturopath when ds first presented with symtpoms. i stopped seeing her b/c she was thinking we needed to work on his gut and then let his immune system take care of the strep. i agreed we needed to work on the gut, but thought we needed to attack the strep. i think i just couldn't trust beefing up his immune system w/o also doing something to attack the infection.

 

we are now seeing an integrative MD and he works more along the lines of doing both at the same time.

 

i'd be curious if you are in MD who the naturopath is, would you PM me if you are comfortable about it?

[matis_mom]

Hello to everyone.

 

I've been away for a long time because each time I read posts I am terrified that all of your situations are going to happen to our family so I had to take a break. But I am back now because I don't know where to turn.

 

In a nutshell, DD4 has had a constant PANDAS exacerbation for almost 2 years. We have been doing IVIG monthly for the past year. We did PEX and it failed. Over the past 6 months(ish) things have started to make sense. Our other daughter is the strep carrier. It seems that erradicating step carriage is not that difficult if a person can take Clindamycin. Our strep carrier daughter is only 3 and was constantly throwing up the Clinda. We put her on daily Augmentin and things calmed down for a while but our daughter got strep even while ON augmentin and re-infected PANDAS DD.

 

Finally after 6 months of trying to get the strep carrier daughter to take Clinda, we were successful. We separated our girls so that PANDAS DD body could have a chance to calm down away from her sister. Shockingly, DD recovered without having to be hospitalized. This has never happened. During the 8 dau separation, I have been giving the strep carrier daughter 3x/day doses of Clinda. Well, last night, she got strep AGAIN!! WHILE ON CLINDA!

 

Can anyone speculate/provide insight here? Our PANDAS daughter is set to come back tomorrow and now there is no way I can reunite them. Why in the world can we not get rid of the carrier state??

 

I can certainly expand on any of these details but I don't want to overwhelm anyone initially. I, myself, am trying to keep an anxiety attack under control!

 

THanks in advance!

FA

What a heartbreaking situation! I would say you need to look at your carrier and see if there is anything up with her. Look into immune deficiencies, absessed tonsils, etc. Even though she is not getting sick *yet* (I hate to say this! sorry!), it's just not normal for her to keep getting strep while on antibiotics. That's probably the last thing you want to hear, but you need to try to find a more permanent solution. Is your younger daughter healthy otherwise? Is there anyone else in the picture that your carrier daughter could be picking up strep from?

Also, are you working with your pediatrician or with an Infectious Disease specialist? Maybe you need to go up a notch.

And, the ever present suggestion these days... have you checked for Lyme Disease? Another thing to check for is mono. I am kind of in the same situation as your daughter in that nothing seems to touch my tonsils. Last month doctor suggested Lyme, this month she is thinking mono? Apparently in certain people it can hang around and suppress your immune system and one of the typical things they see in those cases is that the person keeps getting strep.

The handout she gave me says "there is no treatment for it" and "it resolves on it's own", but I read of people in this forum taking antivirals?

I'm not sure what is up with me but I'm not wasting any more time... I'm seeing an LLMD and hopefully he'll figure it out.

Sorry, I replied before reading everyone else's comments! Keep us posted and I hope this resolves soon!