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PANDASmcnuggetsw/fry/coke

Kill it first before IVIG?

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I think we have done most of everything on Buster's flowchart in pretty short time. (thanks Buster!) This all started in May of this year and now we are looking at IVIG possibly in a matter of a few weeks. We eliminated we think her sinusitus infection and there may be an underlying myco infection. She has been on high dose Biaxin, 2000 mg a day, and we are not getting better. In some ways, worse.

 

Is it neccesary to make sure the mycoplasma is killed before IVIG? Dr K seems to say it does not matter and I think Dr T is saying you want to find and kill that infection first. How can IVIG have any lasting benefits if there is still some underlying infection?

 

Also, we did a 30 steroid taper with 5 really good days in there, the rest declined pretty badly. One doc is considering repeating that soon. I don't understand how a second one could somehow give us lasting change when the 30 day taper left her back at ground zero. Is there an explanation as to how this might work?

 

Thank you so much!!!

PANDAS McNuggets w/fry/coke

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I believe you need to properly rule out Lyme. If I remember correctly your daughter's Igenex results were very suspect of Lyme and many Lyme parents recommended seeing an LLMD for further evaluation and confirmatory testing at the time: 30-31kDA Epitope Confirmation Test, PCR or DNA testing (each additional test is approximately $100 to $125).

 

Two other potential indicators of Lyme/co-infections: Initially worse on antibiotics (herxing) and declining results due to steroid burst.

 

Keep investigating.

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I'm not expert on whether to kill the bugs or not, but I just wanted to point out that if you have a "yeasty" kid, steroids can really cause a bloom of yeast--and you probably know the symptoms already. That could thoroughly disguise any gains from the steroids.

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My ds is doing really well with augmentin/IVIG therefore it is safe to say he is a pandas/pit child to the core but my son just not do well with steroid burst. It turned out that his yeast was interacting with steroid ???? His OCD improved with aug/IVIG but his sugar craving and drunk like behavior had to be controlled with yeast medication. In my son's case, pandas/ocd behavior and yeast behavior were different problems and had to treat them separately. Yeast makes my son crave for sugar and salt and make him act high as if he was high on alcohol or some kind of drug. ( We used to think it was due to his ADHD)

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My ds is doing really well with augmentin/IVIG therefore it is safe to say he is a pandas/pit child to the core but my son just not do well with steroid burst. It turned out that his yeast was interacting with steroid ???? His OCD improved with aug/IVIG but his sugar craving and drunk like behavior had to be controlled with yeast medication. In my son's case, pandas/ocd behavior and yeast behavior were different problems and had to treat them separately. Yeast makes my son crave for sugar and salt and make him act high as if he was high on alcohol or some kind of drug. ( We used to think it was due to his ADHD)

 

What was the yeast medication?

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"And Lynn2, I am totally unfamiliear with "yeasty" issues. What would that look like?"

 

I posted this elsewhere today, but basically I consider yeast issues to be brain fog, giddiness, OCD with a focus on annoying rather than hurting, and swollen stomach.

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HI,

Ask your dr to run a stool test for yeast.

Rx with probiotics starting NOW, rotate various brands,

give 2 hrs before or after your antibiotic, give

Keifer for a snack, all help repopulate the gut with good

bacteria. Keifer is found at Better Health or Whole Foods

milk section, or can make your own..google for same.

 

Yeast behavior...

Libary book...Feast without Yeast.

 

M.C,

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I'm sorry..... I may not be remembering your daughter's Igenex results correctly. I thought she was IgM or IgG positive/IND for Band 31 which is a highly Lyme specific band and would require additional testing. Glad you got some knowledgeable perspective on her results.

Edited by SF Mom

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I think we have done most of everything on Buster's flowchart in pretty short time. (thanks Buster!) This all started in May of this year and now we are looking at IVIG possibly in a matter of a few weeks. We eliminated we think her sinusitus infection and there may be an underlying myco infection. She has been on high dose Biaxin, 2000 mg a day, and we are not getting better. In some ways, worse.

 

Is it neccesary to make sure the mycoplasma is killed before IVIG? Dr K seems to say it does not matter and I think Dr T is saying you want to find and kill that infection first. How can IVIG have any lasting benefits if there is still some underlying infection?

 

Also, we did a 30 steroid taper with 5 really good days in there, the rest declined pretty badly. One doc is considering repeating that soon. I don't understand how a second one could somehow give us lasting change when the 30 day taper left her back at ground zero. Is there an explanation as to how this might work?

 

Thank you so much!!!

PANDAS McNuggets w/fry/coke

 

 

 

I have been told that the ivig would help fight the mycoplasma.

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My ds is doing really well with augmentin/IVIG therefore it is safe to say he is a pandas/pit child to the core but my son just not do well with steroid burst. It turned out that his yeast was interacting with steroid ???? His OCD improved with aug/IVIG but his sugar craving and drunk like behavior had to be controlled with yeast medication. In my son's case, pandas/ocd behavior and yeast behavior were different problems and had to treat them separately. Yeast makes my son crave for sugar and salt and make him act high as if he was high on alcohol or some kind of drug. ( We used to think it was due to his ADHD)

 

What was the yeast medication?

My son is on medication Fluconazole 200 mg once a day.

He has been taking this med for last 2 weeks and it really made a huge differences in terms of his ability to focus.

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I believe you need to properly rule out Lyme. If I remember correctly your daughter's Igenex results were very suspect of Lyme and many Lyme parents recommended seeing an LLMD for further evaluation and confirmatory testing at the time: 30-31kDA Epitope Confirmation Test, PCR or DNA testing (each additional test is approximately $100 to $125).

 

Two other potential indicators of Lyme/co-infections: Initially worse on antibiotics (herxing) and declining results due to steroid burst.

 

Keep investigating.

 

http://www.latitudes.org/forums/index.php?showtopic=10452&st=0

 

I am a little confused...Can you please be a little more specific about the indication of response to steroids and Lyme? In the thread that I posted above, I was told that you cannot really make any assumptions about positive results from steroids and lyme, and yet here you are saying that "declining results due to steroid burst" is an indicator of Lyme.

 

So, I just need to understand this...if you have good results from steroids, you still can't rule out lyme, but if you have a negative response to steroids...then it is a lyme indicator?

 

Please don't read this post as confrontational...it is written in the spirit of just wanting clarification. Thank you.

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Don't worry.... Truly trying to help others get properly diagnosed in advance of more aggressive PANDAS treatment.

 

I was commenting based on what I thought was her DD Igenex results (I thought she was band 31 +/IND which would require additional confirmatory testing because it is highly Lyme specific), declining results from steroid and potentially worse from antibiotics (herxing). It was the combo of those three things that caused me pause not the individual issues... I was only recommending to revisit LYME/co-infection with a well informed LLMD based on the above thoughts if they had not. It appears they have already done that.

 

I recommend listening to ILADS conference this morning... very informative. Dr. Ann Corson will be speaking later and is a pediatric Lyme specialist.... her own son suffered from Lyme. Schedule is posted under Lyme Forum.

Edited by SF Mom

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Don't worry.... Truly trying to help others get properly diagnosed in advance of more aggressive PANDAS treatment.

 

I was commenting based on what I thought was her DD Igenex results (I thought she was band 31 +/IND which would require additional confirmatory testing because it is highly Lyme specific), declining results from steroid and potentially worse from antibiotics (herxing). It was the combo of those three things that caused me pause not the individual issues... I was only recommending to revisit LYME/co-infection with a well informed LLMD based on the above thoughts.

 

I appears they have already done that.

 

Okay, so you do consider a response to steroids, when looking at the big picture? Obviously, that is going to be case by case.

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