im just wondering

[mandyknowles]

Ok, so my daughter is on 3abx (zith, augmentin, and minocycline), and i forgot to fill one of them over the weekend so she went for 3 days without one, and there wasnt a difference at all. There really never is a difference anymore on these. I have talked with her dr about changing them up but he has kept her on the same ones for over a year...Could she be immune to them by now, or just getting better all together?

[MichaelTampa]

Ok, so my daughter is on 3abx (zith, augmentin, and minocycline), and i forgot to fill one of them over the weekend so she went for 3 days without one, and there wasnt a difference at all. There really never is a difference anymore on these. I have talked with her dr about changing them up but he has kept her on the same ones for over a year...Could she be immune to them by now, or just getting better all together?

 

 

I am guessing these are aimed at borrelia (lyme proper) and not the coinfections? Borrelia relapse is frequently slow, as their life cycle is roughly 4 weeks. So, 3 days off would not necessarily make a big difference in terms how she feels.

 

That said, I have started taking weekends off abx and the first two times, the Sunday and then Monday were a bit rougher than normal. Now, I am treating lyme and bartonella, so that could've been the bartonella coming back quickly, which it is known to do.

 

It is always possible the abx have done what they're going to do for her. Aside from energy testing that, the big question is, are symptoms continuing to get better or not?

[mandyknowles]

Ok, so my daughter is on 3abx (zith, augmentin, and minocycline), and i forgot to fill one of them over the weekend so she went for 3 days without one, and there wasnt a difference at all. There really never is a difference anymore on these. I have talked with her dr about changing them up but he has kept her on the same ones for over a year...Could she be immune to them by now, or just getting better all together?

 

 

I am guessing these are aimed at borrelia (lyme proper) and not the coinfections? Borrelia relapse is frequently slow, as their life cycle is roughly 4 weeks. So, 3 days off would not necessarily make a big difference in terms how she feels.

 

That said, I have started taking weekends off abx and the first two times, the Sunday and then Monday were a bit rougher than normal. Now, I am treating lyme and bartonella, so that could've been the bartonella coming back quickly, which it is known to do.

 

It is always possible the abx have done what they're going to do for her. Aside from energy testing that, the big question is, are symptoms continuing to get better or not?

 

 

Nope. At a stand still. The only issue she has at all is the jerking and chest spasms. so, i call the dr and he says, just keep her on her meds till u go see the heart dr. it seems a little ridiculous to me though, since that is the only symptom she has at this point. well, other than the handwriting, studdering, rages at times, but i am thinking that those are all Pandas symptoms and not the lyme. But, I am no doctor either.

[LNN]

Nope. At a stand still. The only issue she has at all is the jerking and chest spasms. so, i call the dr and he says, just keep her on her meds till u go see the heart dr. it seems a little ridiculous to me though, since that is the only symptom she has at this point. well, other than the handwriting, studdering, rages at times, but i am thinking that those are all Pandas symptoms and not the lyme. But, I am no doctor either.

 

I always thought it was more common to switch abx after a period of time rather than stay on the same combo for a year. What does your dr say when you ask about changes?

 

Funny you talk about all the other stuff as Pandas and not lyme. After 6 months with no OCD, no obsessions of getting stuck on an idea, months of decent handwriting - last week in a bad herx, all this came back for DS. And yet, not even a chance of strep or exposure. Increased our detox efforts over the weekend and much of it went away again. So what I've always considered "Pandas" symptoms might actually be 80-90% TBI symptoms - maybe everything except the piano-playing fingers and maybe - maybe - the echolalia and tics that went away after pex.

 

To me, it's all just one brown mud puddle now. I couldn't begin to say what's "just" Pandas and what's "just" lyme. The more I learn, the stupider I feel.

[mandyknowles]

Nope. At a stand still. The only issue she has at all is the jerking and chest spasms. so, i call the dr and he says, just keep her on her meds till u go see the heart dr. it seems a little ridiculous to me though, since that is the only symptom she has at this point. well, other than the handwriting, studdering, rages at times, but i am thinking that those are all Pandas symptoms and not the lyme. But, I am no doctor either.

 

I always thought it was more common to switch abx after a period of time rather than stay on the same combo for a year. What does your dr say when you ask about changes?

 

Funny you talk about all the other stuff as Pandas and not lyme. After 6 months with no OCD, no obsessions of getting stuck on an idea, months of decent handwriting - last week in a bad herx, all this came back for DS. And yet, not even a chance of strep or exposure. Increased our detox efforts over the weekend and much of it went away again. So what I've always considered "Pandas" symptoms might actually be 80-90% TBI symptoms - maybe everything except the piano-playing fingers and maybe - maybe - the echolalia and tics that went away after pex.

 

To me, it's all just one brown mud puddle now. I couldn't begin to say what's "just" Pandas and what's "just" lyme. The more I learn, the stupider I feel.

 

 

He just says why fix whats not broken? yea so im like she is sick, its broken...but he just wont change them. So, Idk, Im thinking of changing drs

[sf_mom]

Our Dr. does rotate when treatment stalls. Actually, holding protocol for longer than six month is NOT typical for him. We are at the opposite extreme with Dr's and sometimes I do want to say....... my (me) kids need a break. BUT, with each flair/herx/rotation we've seen continued improvement. Although exhaustive we are making head way in areas I never imagined was related to Lyme/PANDAS.

 

Have you thought about maybe adding some herbs to protocol and see if you can't stir things up little maybe guiding you on potential lingering infections.

 

-Wendy

Edited April 1, 2011 by SF Mom

[mandyknowles]

Our Dr. does rotate when treatment stalls. Actually, holding protocol for longer than six month is NOT typical for him. We are at the opposite extreme with Dr's and sometimes I do want to say....... my (me) kids need a break. BUT, with each flair/herx/rotation we've seen continued improvement. Although exhaustive we are making head way in areas I never imagined was related to Lyme/PANDAS.

 

Have you thought about maybe adding some herbs to protocol and see if you can't stir things up little maybe guiding you on potential lingering infections.

 

-Wendy

 

What stuff should i add?

[sf_mom]

Since she has some symptoms 'kinda' leaning towards Babesia.... I'd start provoking with Enula. My DD who is almost 4 takes 15 drops (approximately 34 pounds) in the am and pm. I take 30 drops in am and pm. Start slow and work up over two weeks. Add nothing to current protocol and watch for perhaps an increase in symptoms or symptoms specific to Babesia: deep bone pain especially in thighs, gasping for air or air hunger, headaches, development of red/maroon freckles, more fatigue, etc.

 

If she is more symptomatic you can then push for rotation from existing Dr.

 

http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=29

 

Have you done a viral panel on her yet?

 

-Wendy

[mandyknowles]

Since she has some symptoms 'kinda' leaning towards Babesia.... I'd start provoking with Enula. My DD who is almost 4 takes 15 drops (approximately 34 pounds) in the am and pm. I take 30 drops in am and pm. Start slow and work up over two weeks. Add nothing to current protocol and watch for perhaps an increase in symptoms or symptoms specific to Babesia: deep bone pain especially in thighs, gasping for air or air hunger, headaches, development of red/maroon freckles, more fatigue, etc.

 

If she is more symptomatic you can then push for rotation from existing Dr.

 

http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=29

 

Have you done a viral panel on her yet?

 

-Wendy

 

 

I guess I haven't since i dont know what that is.