Re: please help life falling apart here!

Subject: Re: please help life falling apart here!

Unfortunately, you are correct in not being able to figure out which one is most to blame. We often discuss doing one thing at a time and slowly transitioning so we can lesson these kinds of dilemmas. Because Lyme, Bartonella and other tickborne infections are cyclical and pleomorphic, stopping a treatment can make them come out of hibernation to increase symptoms, as well as a new treatment often causes die-off. Yeast is another problem because it too has bad die-off or can overgrow and cause very stressful symptoms.One thing I look for is if the symptoms continue to worsen or if there are signs that they are decreasing. Get word from your doc what is ok to do for die-off, and also you can ask about lessening or skipping doses to give his body a chance to catch up with the changes and die-off.Love and prayers,Heidi N>> ok we had our lyme testing done, got our BANDS and our LLMD has changed our meds and it's causing HELL here!> > we were doing azithro 150 mgs every 10th day and clymindamycin every day 60 mgs, and LDN at night and fluconizole > all was well as far as stuff behaviorally> our labs came back for OATS and immune showing clostrida and yeast issues and liver somewhat stressed> > so our llmd had us go off the diflucan and put us on nystatine and then had us cut out the clamindamyacin and go on the azithro 200 mgs A DAY> > we have tried it 3 times and he falls apart.> > I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today. > > not sure of a few things> if its; the dropping of the clymindamyacin> the upping of the azithro> the dropping of the fluconizole or a reaction to the nystatine> > on the off chance it's the fluconizole gone I have upped other yeast fighters> not thinking we have an issue there> I really think it's either he can't handle that high of azithro> or can't go off the clymindamyacin. > > he has a duel dx of PANDAS and we are for SURE seeing a flare!>

January 23, 2011

yeah I am a long timer in biomedical and know die off, it's not appearing to be that (like I said we have always shown to be nystatine resistant which I also expressed concern with to the dr as well yet he put him on it,) all things are compounded to keep from reactions as much as possible and take some of the guess work out of it.

I really also don't think it's a yeast issue for this reason

the first 2 times I tried to change things, I left the fluconizole IN, (so again not supporting it's that being pulled) and left the clamindamyacin IN (until day 3) while doing the azithro. things ONLY go haywire on day 3...

trial 1 and 2 done that way

trail 3

dropped clymindamycin day 1 and put in 200 mgs of azithro, day 2 nothing antibiotic wise, did fluconizole (trying to space it out more) day 3 100 mgs of azithro and one dose of nystatine (things started down hill again by evening this time) day 4 nystatine 2 times, day 5 100 mgs and it's hell. I have sat for 6 hour screaming refusing to eat breakfast, throwing things, a danger to himself and others. we can't do this.....the only thing I can think to do now is go to 100 mgs ever 5th day and try and work up. today I caved and gave him the clyindamycin hoping for some glimer of hope to address strep or whatever is going on.

From: faithiseverything

Sent: Sunday, January 23, 2011 2:57 PM

Subject: Re: please help life falling apart here!

Unfortunately, you are correct in not being able to figure out which one is most to blame. We often discuss doing one thing at a time and slowly transitioning so we can lesson these kinds of dilemmas. Because Lyme, Bartonella and other tickborne infections are cyclical and pleomorphic, stopping a treatment can make them come out of hibernation to increase symptoms, as well as a new treatment often causes die-off. Yeast is another problem because it too has bad die-off or can overgrow and cause very stressful symptoms.One thing I look for is if the symptoms continue to worsen or if there are signs that they are decreasing. Get word from your doc what is ok to do for die-off, and also you can ask about lessening or skipping doses to give his body a chance to catch up with the changes and die-off.Love and prayers,Heidi N>> ok we had our lyme testing done, got our BANDS and our LLMD has changed our meds and it's causing HELL here!> > we were doing azithro 150 mgs every 10th day and clymindamycin every day 60 mgs, and LDN at night and fluconizole > all was well as far as stuff behaviorally> our labs came back for OATS and immune showing clostrida and yeast issues and liver somewhat stressed> > so our llmd had us go off the diflucan and put us on nystatine and then had us cut out the clamindamyacin and go on the azithro 200 mgs A DAY> > we have tried it 3 times and he falls apart.> > I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today. > > not sure of a few things> if its; the dropping of the clymindamyacin> the upping of the azithro> the dropping of the fluconizole or a reaction to the nystatine> > on the off chance it's the fluconizole gone I have upped other yeast fighters> not thinking we have an issue there> I really think it's either he can't handle that high of azithro> or can't go off the clymindamyacin. > > he has a duel dx of PANDAS and we are for SURE seeing a flare!>

January 23, 2011

Christel,

Nystatin is a bacterial derivitive from Streptomyces noursei. We, too, have used

it but without obvious reaction. I've asked on line, DAN and at several

pharmacies if this strep could contribute to the high anti D-nase B titer and/or

reaction to strep. We continue to see elevated titers despite treatment. No one

seems to have an answer. If it were me, I'd discontinue the nystatin for

starters. We have somewhat the same thing w any soy derivitive - the nattokinase

causes problems. Same with 'good' yeasts like Sac B.

> >

> > ok we had our lyme testing done, got our BANDS and our LLMD has changed our

meds and it's causing HELL here!

> >

> > we were doing azithro 150 mgs every 10th day and clymindamycin every day 60

mgs, and LDN at night and fluconizole

> > all was well as far as stuff behaviorally

> > our labs came back for OATS and immune showing clostrida and yeast issues

and liver somewhat stressed

> >

> > so our llmd had us go off the diflucan and put us on nystatine and then had

us cut out the clamindamyacin and go on the azithro 200 mgs A DAY

> >

> > we have tried it 3 times and he falls apart.

> >

> > I am sitting here 6 HOURS Later and my sons is STILL not eating his

breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today.

> >

> > not sure of a few things

> > if its; the dropping of the clymindamyacin

> > the upping of the azithro

> > the dropping of the fluconizole or a reaction to the nystatine

> >

> > on the off chance it's the fluconizole gone I have upped other yeast

fighters

> > not thinking we have an issue there

> > I really think it's either he can't handle that high of azithro

> > or can't go off the clymindamyacin.

> >

> > he has a duel dx of PANDAS and we are for SURE seeing a flare!

> >

>

January 23, 2011

My lyme Dr made us drop Valtrex and Diflucan when we started our lyme treatment with herbs. We continue to give activated charcoal for die offs. All other biomeds continued. 2 doctors also suspended HBOT for 1yr. Are you guys still on antivirals and antifungals? We are just starting lyme treatment at 17 yrs after testing positive with Igenex. Other comments welcome. Thank you for your response Christel.FranselSender: BorreliaMultipleInfectionsAndAutism Date: Sun, 23 Jan 2011 14:42:30 -0500To: <BorreliaMultipleInfectionsAndAutism >ReplyTo: BorreliaMultipleInfectionsAndAutism Subject: please help life falling apart here! ok we had our lyme testing done, got our BANDS and our LLMD has changed our meds and it's causing HELL here! we were doing azithro 150 mgs every 10th day and clymindamycin every day 60 mgs, and LDN at night and fluconizole all was well as far as stuff behaviorallyour labs came back for OATS and immune showing clostrida and yeast issues and liver somewhat stressed so our llmd had us go off the diflucan and put us on nystatine and then had us cut out the clamindamyacin and go on the azithro 200 mgs A DAY we have tried it 3 times and he falls apart. I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today. not sure of a few thingsif its; the dropping of the clymindamyacinthe upping of the azithrothe dropping of the fluconizole or a reaction to the nystatine on the off chance it's the fluconizole gone I have upped other yeast fightersnot thinking we have an issue thereI really think it's either he can't handle that high of azithroor can't go off the clymindamyacin. he has a duel dx of PANDAS and we are for SURE seeing a flare!

January 23, 2011

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!

From: mbrookh

Sent: Sunday, January 23, 2011 4:19 PM

Subject: Re: please help life falling apart here!

Christel,Nystatin is a bacterial derivitive from Streptomyces noursei. We, too, have used it but without obvious reaction. I've asked on line, DAN and at several pharmacies if this strep could contribute to the high anti D-nase B titer and/or reaction to strep. We continue to see elevated titers despite treatment. No one seems to have an answer. If it were me, I'd discontinue the nystatin for starters. We have somewhat the same thing w any soy derivitive - the nattokinase causes problems. Same with 'good' yeasts like Sac B. > >> > ok we had our lyme testing done, got our BANDS and our LLMD has changed our meds and it's causing HELL here!> > > > we were doing azithro 150 mgs every 10th day and clymindamycin every day 60 mgs, and LDN at night and fluconizole > > all was well as far as stuff behaviorally> > our labs came back for OATS and immune showing clostrida and yeast issues and liver somewhat stressed> > > > so our llmd had us go off the diflucan and put us on nystatine and then had us cut out the clamindamyacin and go on the azithro 200 mgs A DAY> > > > we have tried it 3 times and he falls apart.> > > > I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today. > > > > not sure of a few things> > if its; the dropping of the clymindamyacin> > the upping of the azithro> > the dropping of the fluconizole or a reaction to the nystatine> > > > on the off chance it's the fluconizole gone I have upped other yeast fighters> > not thinking we have an issue there> > I really think it's either he can't handle that high of azithro> > or can't go off the clymindamyacin. > > > > he has a duel dx of PANDAS and we are for SURE seeing a flare!> >>

January 24, 2011

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!

>

January 24, 2011

Are you sure the zithro dose is correct? That looks low to me. My son (40

pounds) used to take 50mg/day.

Can't you try increasing clindamycin again to see if that fixes it?

Caryn

>

> ok we had our lyme testing done, got our BANDS and our LLMD has changed our

meds and it's causing HELL here!

>

> we were doing azithro 150 mgs every 10th day and clymindamycin every day 60

mgs, and LDN at night and fluconizole

> all was well as far as stuff behaviorally

> our labs came back for OATS and immune showing clostrida and yeast issues and

liver somewhat stressed

>

> so our llmd had us go off the diflucan and put us on nystatine and then had us

cut out the clamindamyacin and go on the azithro 200 mgs A DAY

>

> we have tried it 3 times and he falls apart.

>

> I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast.

he is OCD and ODD through the roof, it's been a HUGE fight today.

>

> not sure of a few things

> if its; the dropping of the clymindamyacin

> the upping of the azithro

> the dropping of the fluconizole or a reaction to the nystatine

>

> on the off chance it's the fluconizole gone I have upped other yeast fighters

> not thinking we have an issue there

> I really think it's either he can't handle that high of azithro

> or can't go off the clymindamyacin.

>

> he has a duel dx of PANDAS and we are for SURE seeing a flare!

>

January 24, 2011

I just posted that I didn't think the zithro dose was too high. But, I did I

ever tell you that zithro is what brought out my son's OCD? We need to avoid

that one, he does better on augmentin.

Caryn

>

> ok we had our lyme testing done, got our BANDS and our LLMD has changed our

meds and it's causing HELL here!

>

> we were doing azithro 150 mgs every 10th day and clymindamycin every day 60

mgs, and LDN at night and fluconizole

> all was well as far as stuff behaviorally

> our labs came back for OATS and immune showing clostrida and yeast issues and

liver somewhat stressed

>

> so our llmd had us go off the diflucan and put us on nystatine and then had us

cut out the clamindamyacin and go on the azithro 200 mgs A DAY

>

> we have tried it 3 times and he falls apart.

>

> I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast.

he is OCD and ODD through the roof, it's been a HUGE fight today.

>

> not sure of a few things

> if its; the dropping of the clymindamyacin

> the upping of the azithro

> the dropping of the fluconizole or a reaction to the nystatine

>

> on the off chance it's the fluconizole gone I have upped other yeast fighters

> not thinking we have an issue there

> I really think it's either he can't handle that high of azithro

> or can't go off the clymindamyacin.

>

> he has a duel dx of PANDAS and we are for SURE seeing a flare!

>

January 24, 2011

We are going after chronic Strep infection and reducing inflammation with

Zithromax. We see gains in expressive language and in reducing the frequency of

tics, but my son's episodes of inappropriate giggling and laughing has increased

starting on the 2nd month after introducing Zithromax.

Limin

> I just posted that I didn't think the zithro dose was too high. But, I did I

ever tell you that zithro is what brought out my son's OCD? We need to avoid

that one, he does better on augmentin.

>

> Caryn

>

>>

>> ok we had our lyme testing done, got our BANDS and our LLMD has changed our

meds and it's causing HELL here!

>>

>> we were doing azithro 150 mgs every 10th day and clymindamycin every day 60

mgs, and LDN at night and fluconizole

>> all was well as far as stuff behaviorally

>> our labs came back for OATS and immune showing clostrida and yeast issues and

liver somewhat stressed

>>

>> so our llmd had us go off the diflucan and put us on nystatine and then had

us cut out the clamindamyacin and go on the azithro 200 mgs A DAY

>>

>> we have tried it 3 times and he falls apart.

>>

>> I am sitting here 6 HOURS Later and my sons is STILL not eating his

breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today.

>>

>> not sure of a few things

>> if its; the dropping of the clymindamyacin

>> the upping of the azithro

>> the dropping of the fluconizole or a reaction to the nystatine

>>

>> on the off chance it's the fluconizole gone I have upped other yeast fighters

>> not thinking we have an issue there

>> I really think it's either he can't handle that high of azithro

>> or can't go off the clymindamyacin.

>>

>> he has a duel dx of PANDAS and we are for SURE seeing a flare!

>>

>

> ------------------------------------

>

January 24, 2011

Any antibiotic will cause yeast so you need a strong antifungal on board like diflucan. What doseage/per pound are you using for the azithro? It seems like like my son needs a high dose for a long time or we backslide.

> I just posted that I didn't think the zithro dose was too high. But, I did I ever tell you that zithro is what brought out my son's OCD? We need to avoid that one, he does better on augmentin.> > Caryn> > >> >> ok we had

our lyme testing done, got our BANDS and our LLMD has changed our meds and it's causing HELL here!>> >> we were doing azithro 150 mgs every 10th day and clymindamycin every day 60 mgs, and LDN at night and fluconizole >> all was well as far as stuff behaviorally>> our labs came back for OATS and immune showing clostrida and yeast issues and liver somewhat stressed>> >> so our llmd had us go off the diflucan and put us on nystatine and then had us cut out the clamindamyacin and go on the azithro 200 mgs A DAY>> >> we have tried it 3 times and he falls apart.>> >> I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today. >> >> not sure of a few things>> if its; the dropping of the clymindamyacin>> the upping of the

azithro>> the dropping of the fluconizole or a reaction to the nystatine>> >> on the off chance it's the fluconizole gone I have upped other yeast fighters>> not thinking we have an issue there>> I really think it's either he can't handle that high of azithro>> or can't go off the clymindamyacin. >> >> he has a duel dx of PANDAS and we are for SURE seeing a flare!>> > > > > > ------------------------------------> >

January 24, 2011

Hi Limin,

We were in PANDAS HELL this past fall. My son is 13 yrs old and was 155 pounds. We went to a PANDAS specialist who put him on prednisone high dose and augmentin. That helped but as soon as we stopped the steroids which had lots of sde effects he started to backslide. We then tried azithro at a high dose (10 mgs per kg) for 5 days and then went to once per week. My son backslid instantly as soon as the azithro wore off (about 5 days after the last high dose). I immediatley called the doc and restarted the high dose azithro and within a few hours my son was great again. We are kind of experimenting with a biofilm protocol and alternating the doseage of azithro. It is interesting cause I found some articles that showed that low dose azithro over an extended period of time desroys the biofilm slowly.......lots to learn about this w/ each of our kids. Luckily I have an open minded doc that will let us try varrying

doseages.

> 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!>> >> >> > > > > ------------------------------------> >

January 24, 2011

hi..my son was on the zithro..but 3 days ago I switched to Coloidal Silver...it is incredible ..he is speaking more clearly, more clear in cognition, more interactive..and more energy...not that he didnt have lots before..but really remarkable stuff..we saw improvment with zithrio..but nothing like this.....it is ioic colloidil silver...very small particle size...(mesosilver supposed to be the best) gosh..wonder if you tried this or known anyone who did?

To: BorreliaMultipleInfectionsAndAutism From: limin@...Date: Mon, 24 Jan 2011 18:06:33 -0800Subject: Re: Re: please help life falling apart here!

, do you see good gains with daily Zithromax? My son takes 500 mg Zithromax once a week. This is our 3rd month. We have some small gains in expressive language, and no big WOWs. I would like to get some feedback form those who use Zithromax daily on the kids. Thanks.Limin> 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!>> >> >> > > > > ------------------------------------> >

January 24, 2011

There are Pleomorphic remedies out there by Sanum; one of them is for strep or staph: contains homeopathic penicillinum. It can be rubbed gently into the skin if necessary instead of ingestion. Sometimes too much change too fast of familiar substances can aggravate a very sensitive or unbalanced nervous system to overload. If self-awareness and communication skills are stuck at certain levels, the additional fear resulting from not being able to express, examine and own fear and discomfort, spaciness and wounded ego growth can drive a person nuts. --This means adults, let alone kids who have not had a chance to experience groundedness and self-agency yet on the types of psychological developmental scales researched by

Maslow, Piaget, etc. No wonder there is so much hell out there. All these parents and kids are beyond heroism for sticking with their loved ones; pray for the abandoned ones. To: BorreliaMultipleInfectionsAndAutism Sent: Mon, January 24, 2011 9:11:06 PMSubject: Re: Re: please help life falling apart here!

We are going after chronic Strep infection and reducing inflammation with Zithromax. We see gains in expressive language and in reducing the frequency of tics, but my son's episodes of inappropriate giggling and laughing has increased starting on the 2nd month after introducing Zithromax.

Limin

> I just posted that I didn't think the zithro dose was too high. But, I did I ever tell you that zithro is what brought out my son's OCD? We need to avoid that one, he does better on augmentin.

>

> Caryn

>

>>

>> ok we had our lyme testing done, got our BANDS and our LLMD has changed our meds and it's causing HELL here!

>>

>> we were doing azithro 150 mgs every 10th day and clymindamycin every day 60 mgs, and LDN at night and fluconizole

>> all was well as far as stuff behaviorally

>> our labs came back for OATS and immune showing clostrida and yeast issues and liver somewhat stressed

>>

>> so our llmd had us go off the diflucan and put us on nystatine and then had us cut out the clamindamyacin and go on the azithro 200 mgs A DAY

>>

>> we have tried it 3 times and he falls apart.

>>

>> I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today.

>>

>> not sure of a few things

>> if its; the dropping of the clymindamyacin

>> the upping of the azithro

>> the dropping of the fluconizole or a reaction to the nystatine

>>

>> on the off chance it's the fluconizole gone I have upped other yeast fighters

>> not thinking we have an issue there

>> I really think it's either he can't handle that high of azithro

>> or can't go off the clymindamyacin.

>>

>> he has a duel dx of PANDAS and we are for SURE seeing a flare!

>>

>

> ------------------------------------

>

January 24, 2011

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

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!> > >

January 24, 2011

Hi ,Do you have the links to the articles handy that you can post? What is considered low dose? What do you plan to use for biofilm protocol? Hope you don't mind me asking a bunch of questions. My son's gut is sensitive. I no longer want to use biofilm enzymes. I am think of using Venus Flytrap (Carnivora) for breaking up biofilm. I have the Herb Pharm brand. LiminHi Limin, We were in PANDAS HELL this past fall. My son is 13 yrs old and was 155 pounds. We went to a PANDAS specialist who put him on prednisone high dose and augmentin. That helped but as soon as we stopped the steroids which had lots of sde effects he started to backslide. We then tried azithro at a high dose (10 mgs per kg) for 5 days and then went to once per week. My son backslid instantly as soon as the azithro wore off (about 5 days after the last high dose). I immediatley called the doc and restarted the high dose azithro and within a few hours my son was great again. We are kind of experimenting with a biofilm protocol and alternating the doseage of azithro. It is interesting cause I found some articles that showed that low dose azithro over an extended period of time desroys the biofilm slowly.......lots to learn about this w/ each of our kids. Luckily I have an open minded doc that will let us try varrying doseages. > 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!>> >> >> > > > > ------------------------------------> >

January 24, 2011

yes I did that yesterday, after hours of melt downs I FINALLY caved and gave the clyminda and all things were fine again, I think he simply needs the clymindamyacin!!! the anzithro is 200 mgs per day, he is just shy of 60 pounds

From: Caryn_Reid

Sent: Monday, January 24, 2011 10:21 AM

Subject: Re: please help life falling apart here!

Are you sure the zithro dose is correct? That looks low to me. My son (40 pounds) used to take 50mg/day.Can't you try increasing clindamycin again to see if that fixes it?Caryn>> ok we had our lyme testing done, got our BANDS and our LLMD has changed our meds and it's causing HELL here!> > we were doing azithro 150 mgs every 10th day and clymindamycin every day 60 mgs, and LDN at night and fluconizole > all was well as far as stuff behaviorally> our labs came back for OATS and immune showing clostrida and yeast issues and liver somewhat stressed> > so our llmd had us go off the diflucan and put us on nystatine and then had us cut out the clamindamyacin and go on the azithro 200 mgs A DAY> > we have tried it 3 times and he falls apart.> > I am sitting here 6 HOURS Later and my sons is STILL not eating his breakfast. he is OCD and ODD through the roof, it's been a HUGE fight today. > > not sure of a few things> if its; the dropping of the clymindamyacin> the upping of the azithro> the dropping of the fluconizole or a reaction to the nystatine> > on the off chance it's the fluconizole gone I have upped other yeast fighters> not thinking we have an issue there> I really think it's either he can't handle that high of azithro> or can't go off the clymindamyacin. > > he has a duel dx of PANDAS and we are for SURE seeing a flare!>

January 24, 2011

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

January 25, 2011

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

From: Anne Mears

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

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

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

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The message was checked by ESET NOD32 Antivirus.

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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

January 25, 2011

I would also take a picture of it!

> >

> > 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.

>

>

> __________ Information from ESET NOD32 Antivirus, version of virus signature

database 5814 (20110124) __________

>

> The message was checked by ESET NOD32 Antivirus.

>

>

> __________ Information from ESET NOD32 Antivirus, version of virus signature

database 5815 (20110125) __________

>

> The message was checked by ESET NOD32 Antivirus.

>

>

> __________ Information from ESET NOD32 Antivirus, version of virus signature

database 5815 (20110125) __________

>

> The message was checked by ESET NOD32 Antivirus.

>

>

January 25, 2011

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 ring From: 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

January 25, 2011

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

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

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

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.

__________ Information from ESET NOD32 Antivirus, version of virus signature database 5815 (20110125) __________

The message was checked by ESET NOD32 Antivirus.

__________ 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.

__________ 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

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

yeah talked with my dr today, he isnt' sure if it' a biofilm thing (but that DOES make sense to me) so we are going BACK on the clyminda and slowly putting the azithro back in, I know Usman has been mentoring him and he has taken our sons specific case to her, so perhaps this is where he is coming up with this idea. but he called me back today as I was in tears and couldnâ€™t' get my kids to school till 10:30 because he was in melt down, gave him clymindamyacin and he was great and perfect at school all day again with no azithro but 2 days back. either bad herks or he simpley can not go off of clymindamyacin....either way we have a game plan now...hoping it helps. I will keep everyone updated. taking pictures of the rash tommorrow and sending it to him

From: Fund

Sent: Tuesday, January 25, 2011 6:33 PM