Re: Re: please help life falling apart here!

January 25, 2011

The azithro dosing for PANDAS is very new territory.....just like everything else. I am thinking it's very dose dependent on each child. My son was doing great at 750 mgs daily (he weighs 170 pounds and is 14, has severe PANDAS, and has most likely had PANDAS for many years gradually getting worse). We are now doing 500 mgs of azithro daily w/ Dr Usman's biofilm protocol (heavy duty).........we are seeing good gains across the board......language, anxiety, handwriting, math, behaviors, OCD, and rages/SIBS are gone!

Hopefully we will continue w/ the gains on the azithro/biofilm. We are also trying to get insurance coverage for IVIG. I think you need to play w/ the dose of azithro to see what works for your child......also look into the biofilm protocol.

Subject: Re: please help life falling apart here!To: BorreliaMultipleInfectionsAndAutism Date: Tuesday, January 25, 2011, 4:49 PM

Limin,Daily Zithromax @250 mg day keeps the Pandas in check unless in my son's case he's exposed to a virus that does not clear in which case we need 30 days Augmentin because symptoms like OCD break through. Put another way Zitro gives us modest gains v v decrease or loss of PANDAS symptoms in the beginning and then holds them steady (I have 2 with Pandas.) IVIG + Zithro is giving my more typical daughter terrific global gains/recovery after 5 years of PANDAS symptoms. IVIG + Zithro is giving my son w/ PDD gains in language, cognition, socialization; yeast is a problem on Augmentin we have to also use Diflucan. I find that IVIG post treatment care requires vigilance for gut bugs, requires constant management of the gut. But, their relative gains and relative health as compared to the last 4-5 years do make these problems much clearer, they jump out.Hope it helps,>

January 25, 2011

If it is larger than an inch, it is big enough to be considered an EM rash, even by conventional docs who try to deny Lyme disease. I am not aware of other organisms that will cause a circular rash like this, but it is possible. Anne M., BSN, MSN/IH, RNmcfighter@... From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of Christel ChurchSent: Tuesday, January 25, 2011 12:54 PMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Re: please help life falling apart here! oh me and my kids have had MUCH large spots then cms.....we have had inch and more in diameter ones! From: Anne Mears Sent: Tuesday, January 25, 2011 3:21 PMTo: BorreliaMultipleInfectionsAndAutism Subject: RE: Re: please help life falling apart here! I thought ring worm was a parasite, and yes, I have heard of it and seen it. It rarely gets larger than 1-2 cm in diameter. If it is larger than that, it is more likely to be an EM rash.Anne M., BSN, MSN/IH, RNmcfighter@...From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of Christel ChurchSent: Tuesday, January 25, 2011 7:53 AMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Re: please help life falling apart here! you have never heard of ring worm?? that is yeast in a ringFrom: Anne Mears Sent: Tuesday, January 25, 2011 1:22 AMTo: BorreliaMultipleInfectionsAndAutism Subject: RE: Re: please help life falling apart here! Never heard of yeast emerging as a ring, especially on skin that is not in a constant fold or in contact with other skin. Might be best to get it check for a possible EM rash which is diagnostic for Lyme.Anne M., BSN, MSN/IH, RNmcfighter@...From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of Christel ChurchSent: Monday, January 24, 2011 8:20 PMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Re: please help life falling apart here! oh my gosh what happened then at 500 mgs???? I can't even imagine pushing the envolope more. to add to the fun I notice he now has a ring on his arm that has started since starting it back up. now now sure if I should take him to his dr to look at it to see if it's a lyme ring coming out or yeast....thinking I will try an antifungal on it and see if it gets better and if not confirm it as lyme coming out????From: erinsullivan65 Sent: Monday, January 24, 2011 9:44 AMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: please help life falling apart here! Sounds like the Zithro die off my daughter had when starting Zithro back in May. She was ok at 250 mg but all it all went to pieces late on the 3rd day going into the 4th and our Dr. thought it was " Zithro die off " , which I'd not wrapped my head around until that point. We used 2 charcoal away from everything else 2 hours after the Zithro AND increased the Zithro to 500 mg per day until all was calm for a few days and went back to 250 mg. >> yeah but the nystaine wouldn't be the source either in the regression as it wasn't used the first 2 trial runs.....the only thing in common in both is the dropping of the clymindamyacin and the adding of the high dose azithyro.....but I can drop and see if it gets better> > here to add to the mess about 4 hours ago things got better after giving the clymindamyacin....starting to think he just can't go off it!> > >__________ Information from ESET NOD32 Antivirus, version of virus signature database 5814 (20110124) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com__________ Information from ESET NOD32 Antivirus, version of virus signature database 5814 (20110124) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com__________ Information from ESET NOD32 Antivirus, version of virus signature database 5815 (20110125) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com__________ Information from ESET NOD32 Antivirus, version of virus signature database 5815 (20110125) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com__________ Information from ESET NOD32 Antivirus, version of virus signature database 5817 (20110125) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com__________ Information from ESET NOD32 Antivirus, version of virus signature database 5817 (20110125) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com__________ Information from ESET NOD32 Antivirus, version of virus signature database 5818 (20110125) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com__________ Information from ESET NOD32 Antivirus, version of virus signature database 5818 (20110125) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com__________ Information from ESET NOD32 Antivirus, version of virus signature database 5818 (20110125) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 5818 (20110125) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 5818 (20110125) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com

January 25, 2011

what are you refering to with an EM rash? what is EM?

From: Anne Mears

Sent: Tuesday, January 25, 2011 7:13 PM

To: BorreliaMultipleInfectionsAndAutism

Subject: RE: Re: please help life falling apart here!

If it is larger than an inch, it is big enough to be considered an EM rash, even by conventional docs who try to deny Lyme disease. I am not aware of other organisms that will cause a circular rash like this, but it is possible.

Anne M., BSN, MSN/IH, RN

mcfighter@...

From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of Christel ChurchSent: Tuesday, January 25, 2011 12:54 PMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Re: please help life falling apart here!

oh me and my kids have had MUCH large spots then cms.....we have had inch and more in diameter ones!

From: Anne Mears

Sent: Tuesday, January 25, 2011 3:21 PM

To: BorreliaMultipleInfectionsAndAutism

Subject: RE: Re: please help life falling apart here!

I thought ring worm was a parasite, and yes, I have heard of it and seen it. It rarely gets larger than 1-2 cm in diameter. If it is larger than that, it is more likely to be an EM rash.

Anne M., BSN, MSN/IH, RN

mcfighter@...

From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of Christel ChurchSent: Tuesday, January 25, 2011 7:53 AMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Re: please help life falling apart here!

you have never heard of ring worm?? that is yeast in a ring

From: Anne Mears

Sent: Tuesday, January 25, 2011 1:22 AM

To: BorreliaMultipleInfectionsAndAutism

Subject: RE: Re: please help life falling apart here!

Never heard of yeast emerging as a ring, especially on skin that is not in a constant fold or in contact with other skin. Might be best to get it check for a possible EM rash which is diagnostic for Lyme.

Anne M., BSN, MSN/IH, RN

mcfighter@...

From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of Christel ChurchSent: Monday, January 24, 2011 8:20 PMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Re: please help life falling apart here!

oh my gosh what happened then at 500 mgs???? I can't even imagine pushing the envolope more. to add to the fun I notice he now has a ring on his arm that has started since starting it back up. now now sure if I should take him to his dr to look at it to see if it's a lyme ring coming out or yeast....thinking I will try an antifungal on it and see if it gets better and if not confirm it as lyme coming out????

From: erinsullivan65

Sent: Monday, January 24, 2011 9:44 AM

To: BorreliaMultipleInfectionsAndAutism

Subject: Re: please help life falling apart here!

Sounds like the Zithro die off my daughter had when starting Zithro back in May. She was ok at 250 mg but all it all went to pieces late on the 3rd day going into the 4th and our Dr. thought it was "Zithro die off", which I'd not wrapped my head around until that point. We used 2 charcoal away from everything else 2 hours after the Zithro AND increased the Zithro to 500 mg per day until all was calm for a few days and went back to 250 mg. >> yeah but the nystaine wouldn't be the source either in the regression as it wasn't used the first 2 trial runs.....the only thing in common in both is the dropping of the clymindamyacin and the adding of the high dose azithyro.....but I can drop and see if it gets better> > here to add to the mess about 4 hours ago things got better after giving the clymindamyacin....starting to think he just can't go off it!> > >

__________ Information from ESET NOD32 Antivirus, version of virus signature database 5814 (20110124) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com

__________ Information from ESET NOD32 Antivirus, version of virus signature database 5814 (20110124) __________