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More myco-p babbling


JAG10
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Do you think this is possible....

 

Pre-IVIG; dd had highly elevated ASO and anti-DNAse-B >1360, somewhat elevated myco-p (1.6)

She had also been on amoxicillin (10d), zith (3wks) and biaxin (12wks) immediately preceding IVIG

 

9 weeks post IVIG; her ASO and DNAse-B drop Significantly, but myco-p doubles (3.02)

She was on Augmentin those 9 weeks

 

Do you think it is possible that IVIG results in decreased antibodies for cleared infections and increased antibodies for active/chronic/stealth infections??

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Do you think this is possible....

 

Pre-IVIG; dd had highly elevated ASO and anti-DNAse-B >1360, somewhat elevated myco-p (1.6)

She had also been on amoxicillin (10d), zith (3wks) and biaxin (12wks) immediately preceding IVIG

 

9 weeks post IVIG; her ASO and DNAse-B drop Significantly, but myco-p doubles (3.02)

She was on Augmentin those 9 weeks

 

Do you think it is possible that IVIG results in decreased antibodies for cleared infections and increased antibodies for active/chronic/stealth infections??

JAG - could it be that the myco-p was not clear before IVIG and her biaxin and zith were stopped (which clear myco p better)... and perhaps augmentin alone is not enough to clear myco p?

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I think that is possible...but her myco-p doubled from what it was before she started any abx at all. How do we explain that?

 

Dr. T had said he thought 10 weeks on biaxin was more than enough time to clear myco-p, but Wendy gave me a link for a doc that said 9-24 MONTHS!!!! Really?!?!?

 

I just wonder if there is any reasoning behind IVIG bringing down the antibodies of strep but doubling the antibodies of myco-p??

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I am only speaking from my own experience with dealing with myco. It has now been 1 year and as of last month my dd's level were IgG 3.0 and IgM 2000. Last year they were 5.0 and 3200. She was treated with 12 weeks biaxin and one month zith. I think it takes like "forever" to see normal range. So I really don't know how you would clear a myco infection.

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These were my dd's levels:

 

3/10- IgG 1.63, IgM 667

(IVIG 5/10)

7/10- 3.02, 764

11/10- 2.10, 751

 

So, her myco-p went up in the summer post IVIG when there was no sign of a cough whatsoever and no increase in behavioral symptoms either.

All her IgM levels are in the borderline range.

 

When I asked Dr. K about it, he said it was nothing to worry about. I don't know what to believe anymore.

 

THERE IS NOTHING BLACK AND WHITE ABOUT PANDAS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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I am not sure which tests they are using for the Myco P but I was under the impression that ivig could scew the results for a myco test because of the infused Ig's. I could be mistaken, but I think it was suggested to wait at least 12 wks after ivig for myco or lyme testing.

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These were my dd's levels:

 

3/10- IgG 1.63, IgM 667

(IVIG 5/10)

7/10- 3.02, 764

11/10- 2.10, 751

 

So, her myco-p went up in the summer post IVIG when there was no sign of a cough whatsoever and no increase in behavioral symptoms either.

All her IgM levels are in the borderline range.

 

When I asked Dr. K about it, he said it was nothing to worry about. I don't know what to believe anymore.

 

THERE IS NOTHING BLACK AND WHITE ABOUT PANDAS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So true about not being black and white. To add to that no treatment seems to be cut and dry! At least all the experts seem to be in the same book, not necessarily on the same page. Not yet anyway.

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I was thinking the same thing about IVIG impacting results. Seems like it is a possibility...given no physical or PANDAS symptoms. Your daughters numbers are very similiar to my sons...and I was told the same thing....not to worry about them. The IGG is just indicating a past infection...the IGM is recent, but, those are still negative...right? (although close... like my sons)???

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I was thinking the same thing about IVIG impacting results. Seems like it is a possibility...given no physical or PANDAS symptoms. Your daughters numbers are very similiar to my sons...and I was told the same thing....not to worry about them. The IGG is just indicating a past infection...the IGM is recent, but, those are still negative...right? (although close... like my sons)???

 

Can you explain the science behind why IVIG would result in ASO & DNAse B titers going down (a lot) but myco-p going up? Dr. K said something about myco-p being elevated in the adult public in general, but I guess the same isn't true for strep?? Does that make sense?

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Absolutely, there has been improvement, just not complete remission. She still reacts to immune challenges, which are far too frequent this time of year, by backsliding, but then returns to that same 75% mark. At that mark, her OCD symptoms are well in check, more age appropriate behavior, better socially. Where she falls short is in the concentration/focus/task completion arena and memory/processing speed. Her eyes are still widely dilated all the time, but she's been off all psych meds since IVIG (they didn't help much anyway). It was interesting bcs right after IVIG, she looked different bcs of her eyes. They were constantly dilated before IVIG and three days after IVIG there was just a dot of black pupil and all beautiful hazel they way they should be!

 

If we could get her body to stop reacting to immune challenges, her brain would have a chance to heal and the swelling go down.

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