NRT wants us off antibiotics so body can process strep naturally

[pixiesmommy]

This is kind of complicated to explain, but Pixie's Nutritional Response Therapist is advocating that we go off the antibiotics so that her body can process the strep. According to her (and you may think this is a bunch of hooey, but we have seen really dramatic results since starting NRT, so I am inclined to believe...), there is a reason that her body "needs" strep. The antibiotics are functioning to only keep symptoms of PANDAS in check for us at this point, NOT to keep strep away (We had 4 infections raging through the entire family this summer with NO symptoms other than Pixie being the "canary" with leg pain and mood changes.)

 

Her theory/science with what she does- and I hope I can explain this- is that the body will attract certain things to fill needs. For example, if you have mercury in your body, the body will attract yeast and those things will feed off of one another because they work well in concert. So her theory about strep is that there is something in the body that "needs" the strep to survive. If we can't harness the strep (so to speak) in order to eradicate it, then it will just continue to come back. The antibiotics are covering up the strep and the subsequent toxins that the strep is attracted to, and we can't find the "source" of the issue (not the strep, but the thing it's attracted to) until we get rid of the mask of abx.

 

On one hand, I am terrified of doing this, especially at the start of the school year, considering the ###### we went through last year with everything. On the other hand, we are due for our 1 yr follow-up with Dr.K and I feel in my heart of hearts he is going to pull her from the antibiotics anyway, since he has alluded to it numerous times since IVIG. There is also the fact that I know the abx are just introducing more chemicals and things for her body to process and deal with and we know that she is chemically sensitive. We do get dye-free, but still.

 

I have started NRT myself to see if it makes a difference with me, and I am hoping I will see a drastic difference in how I feel and that will reassure me that this is the way to go. I feel like if we are going to do this, I want to be prepared for the worst though!! A friend just referred us to Easter Seals, saying they have some great programs (free!!) and OT, etc. that would be great for us. We still have not been able to find an OT that would work with our insurance, so I am hoping to get in touch with them and see if we qualify for any services. We have been lucky to be able to let our safety nets drop a little in response to the remission we have enjoyed, but I know how quickly things can fall apart and how hard it is to get those nets back in place when in a period of crisis.

 

Thoughts?

Edited August 30, 2010 by pixiesmommy

[Doug]

Keep us posted please

I would like to know what dr.k does about the ab'x.

Tracie&Doug

[Fixit]

This is kind of complicated to explain, but Pixie's Nutritional Response Therapist is advocating that we go off the antibiotics so that her body can process the strep. According to her (and you may think this is a bunch of hooey, but we have seen really dramatic results since starting NRT, so I am inclined to believe...), there is a reason that her body "needs" strep. The antibiotics are functioning to only keep symptoms of PANDAS in check for us at this point, NOT to keep strep away (We had 4 infections raging through the entire family this summer with NO symptoms other than Pixie being the "canary" with leg pain and mood changes.)

 

Her theory/science with what she does- and I hope I can explain this- is that the body will attract certain things to fill needs. For example, if you have mercury in your body, the body will attract yeast and those things will feed off of one another because they work well in concert. So her theory about strep is that there is something in the body that "needs" the strep to survive. If we can't harness the strep (so to speak) in order to eradicate it, then it will just continue to come back. The antibiotics are covering up the strep and the subsequent toxins that the strep is attracted to, and we can't find the "source" of the issue (not the strep, but the thing it's attracted to) until we get rid of the mask of abx.

 

On one hand, I am terrified of doing this, especially at the start of the school year, considering the ###### we went through last year with everything. On the other hand, we are due for our 1 yr follow-up with Dr.K and I feel in my heart of hearts he is going to pull her from the antibiotics anyway, since he has alluded to it numerous times since IVIG. There is also the fact that I know the abx are just introducing more chemicals and things for her body to process and deal with and we know that she is chemically sensitive. We do get dye-free, but still.

 

I have started NRT myself to see if it makes a difference with me, and I am hoping I will see a drastic difference in how I feel and that will reassure me that this is the way to go. I feel like if we are going to do this, I want to be prepared for the worst though!! A friend just referred us to Easter Seals, saying they have some great programs (free!!) and OT, etc. that would be great for us. We still have not been able to find an OT that would work with our insurance, so I am hoping to get in touch with them and see if we qualify for any services. We have been lucky to be able to let our safety nets drop a little in response to the remission we have enjoyed, but I know how quickly things can fall apart and how hard it is to get those nets back in place when in a period of crisis.

 

Thoughts?

 

do keep us posted....soooo great your dd is doing so well 1 year out...1 ivig right!?

[matis_mom]

We saw a nutritionist/naturopath who wants us to take ds off of antibiotics to do a GI panel. We would have to have him off for two weeks. In our case, I feel it is not worth the risk. DS feels like he is hanging by a thin thread, and I'm not ready to cut it!

But I understand the idea and if you feel your child is ready, it may be worth a try. In the end, we all want to get to the bottom of this.

Let us know how it goes.

 

Isabel

[mama2alex]

"The antibiotics are covering up the strep and the subsequent toxins that the strep is attracted to, and we can't find the "source" of the issue (not the strep, but the thing it's attracted to) until we get rid of the mask of abx."

 

I pulled this part of your post out because I'm wondering how she is going to "find the source" once your daughter is off antibiotics? Does she have some idea of what it might be? Also, if you know that strep keeps coming back, how are antibiotics "covering up" the other issue? Why can't she find the other issue on the antibiotics? If its heavy metals, antibiotics shouldn't prevent you from finding the problem. If its Lyme, that would affect the testing, but a good Lyme-literate doctor can diagnose it clinically.

 

I do understand that these kinds of alternative medicine practices can be very powerful - we've used one or two things that were off the beaten path - but when it comes to taking a kid off antibiotics, I do have to pause. Our DAN doc wanted to address what he felt was hidden strep by taking our son off antibiotics and using herbals to kill the strep. We are not going to do that - we are talking with a different doctor on Wednesday.

 

As for Dr. K taking her off antibiotics after one year, I know several other families whose kids are doing great after IVIG with Dr. K, but they are keeping their children on antibiotics long term. I can't understand why he would take her off if your family is dealing with recurrent strep!

 

I guess I'm saying just be careful. You guys have come SO FAR, you don't want to lose that. There must be a way to keep moving forward without risking a giant step back.

[Megs_Mom]

I am going to respond emotionally! So I apologize in advance! And WHATEVER you decide to do, I will completely support you - you have MORE than earned the title of warrior mom. But... I will never forget what you all went through and my candid response is " no way"! Pixie-and you - went through so much to get to where you are today. Maybe after 2 years?

 

Whatever you decide, I know it will take so much courage and I wish you well. I wish there were research based answers for you.

 

So glad pixie is so well. All my best - Susan

[Fixit]

I am going to respond emotionally! So I apologize in advance! And WHATEVER you decide to do, I will completely support you - you have MORE than earned the title of warrior mom. But... I will never forget what you all went through and my candid response is " no way"! Pixie-and you - went through so much to get to where you are today. Maybe after 2 years?

 

Whatever you decide, I know it will take so much courage and I wish you well. I wish there were research based answers for you.

 

So glad pixie is so well. All my best - Susan

 

 

good point..

[P_Mom]

I would have to ask....does the NRT really get PANDAS? I mean, does she REALLY get it? I am doubtful because there are about 3 or 4 docs that I know of that really get it. I would be careful. But..... like others said....so glad Pixie is doing well....best wishes whatever you decide!

 

I am sure Dr. k is going to say it is fine to take her off....he believes these kids are cured after a year. Atleast, that is what he used to think.

[Priscilla]

If you do decide to stop abx I would recommend a very slow wean (over several months) along w/ probiotics to give her system time to adjust appropriately. My father had told me about something he read about stopping the abx and a sort of rebounding of bacteria (good and bad) that can overwhelm the system. It makes perfect sense to me. When we get to that point, a VERY SLOW wean will be my plan. I am also giving the fish oil in case it is the anti-inflammatory effects of the abx giving the most benefit. Best of luck to you!