Re: Saw psychiatrist/Can someone give me advice?

April 26, 2012

Hey Lilly,

Using a good binder like cholestyromine? Detoxing?

Culturelle may not be enough to address systemic yeast. It depends on how bad it is. Or it could be working really well but the die-off could be really bad. (needing binders/good detoxing)

Know what her toxic load is??? Need blood tests to know and have to look at genetics picture.

DId you mean the psychiatrist is treating lyme?

I have a great LLMD in CA. Dr B that could help you I think. Debbie

-- Saw psychiatrist/Can someone give me advice?

my 13 yo is being treated for lie/bartonella. no matter what we try, we can't bring her out of her "stuck" little world. she is on...minocyclinebactrimlamictalprozacmelatoninwe have culturelle on board for yeast, but it makes her mean and she never stops bouncing of wall. we are going to add vancomycin in for clostridia, but last time we tried this stuff...the doctor took her off cause she was bouncing so much and had a hard time breathing. there's a chance that the clostridia is making her look autistic, but not sure how we treat it, if she can't handle vancomycin and probiotics. she can not shower, or brush her teeth or do any school work. every time she gets close to doing anyone of these chores, she said her brain just goes bland and it turns off. this kid tries so hard. any advice is soooooo welcome.

April 26, 2012

i use charcoal and it does nothing to help. had hair tests done for heavy metals

and all looked fine. had tons of blood work and nothing comes back negative. she

has horrible psych. symptoms.

>

> Hey Lilly,

>

> Using a good binder like cholestyromine? Detoxing?

>

> Culturelle may not be enough to address systemic yeast. It depends on how

> bad it is. Or it could be working really well but the die-off could be

> really bad. (needing binders/good detoxing)

>

> Know what her toxic load is??? Need blood tests to know and have to look at

> genetics picture.

>

> DId you mean the psychiatrist is treating lyme?

>

> I have a great LLMD in CA. Dr B that could help you I think. Debbie

>

> -- Saw psychiatrist/Can someone

> give me advice?

>

> my 13 yo is being treated for lie/bartonella. no matter what we try, we can

> t bring her out of her " stuck " little world. she is on...

>

> minocycline

> bactrim

> lamictal

> prozac

> melatonin

>

> we have culturelle on board for yeast, but it makes her mean and she never

> stops bouncing of wall.

> we are going to add vancomycin in for clostridia, but last time we tried

> this stuff...the doctor took her off cause she was bouncing so much and had

> a hard time breathing. there's a chance that the clostridia is making her

> look autistic, but not sure how we treat it, if she can't handle vancomycin

> and probiotics. she can not shower, or brush her teeth or do any school work

> every time she gets close to doing anyone of these chores, she said her

> brain just goes bland and it turns off. this kid tries so hard. any advice

> is soooooo welcome.

>

April 26, 2012

Hey Lilly,

We could easily be talking about different blood work and we probably are.

I did not see much difference or help from charcoal either. It is not in the same category as cholestyromine and it will never do what cholestyromine does. Chol has a tremendous effect on my son's psych symptoms....for the better.

We don't base protocols on the results of hair analysis tests but that's us. I just don't believe that they are very reliable...but that's me.

There are a few things that are worth giving a good trial run and with your daughter's symptoms and I believe I would try cholestyromine if I we're you....especially if there's blood work that still should be done.

Message me if you like and we can exchange phone numbers and I'll tell you what's worked for us. My son had HORRIBLE psychiatric symptoms just a couple months ago. Debbie

-- Saw psychiatrist/Can someone> give me advice?> > > my 13 yo is being treated for lie/bartonella. no matter what we try, we can> t bring her out of her "stuck" little world. she is on...> > minocycline> bactrim> lamictal> prozac> melatonin> > we have culturelle on board for yeast, but it makes her mean and she never> stops bouncing of wall. > we are going to add vancomycin in for clostridia, but last time we tried> this stuff...the doctor took her off cause she was bouncing so much and had> a hard time breathing. there's a chance that the clostridia is making her> look autistic, but not sure how we treat it, if she can't handle vancomycin> and probiotics. she can not shower, or brush her teeth or do any school work> every time she gets close to doing anyone of these chores, she said her> brain just goes bland and it turns off. this kid tries so hard. any advice> is soooooo welcome.>

April 27, 2012

That normally means her dopamine is out of wack. Have you had her homocysteine levels checked and her hormone levels. T i use charcoal and it does nothing to help. had hair tests done for heavy metals and all looked fine. had tons of blood work and nothing comes back negative. she has horrible psych. symptoms. > > > Hey Lilly, > > Using a good binder like cholestyromine? Detoxing? > > Culturelle may not be enough to address systemic yeast. It depends on how > bad it is. Or it could be working really well but the die-off could be > really bad. (needing binders/good detoxing) > > Know what her toxic load is??? Need blood tests to know and have to look at > genetics picture. > > DId you mean the psychiatrist is treating lyme? > > I have a great LLMD in CA. Dr B that could help you I think. Debbie > > > > -- Saw psychiatrist/Can someone > give me advice? > > > my 13 yo is being treated for lie/bartonella. no matter what we try, we can > t bring her out of her "stuck" little world. she is on... > > minocycline > bactrim > lamictal > prozac > melatonin > > we have culturelle on board for yeast, but it makes her mean and she never > stops bouncing of wall. > we are going to add vancomycin in for clostridia, but last time we tried > this stuff...the doctor took her off cause she was bouncing so much and had > a hard time breathing. there's a chance that the clostridia is making her > look autistic, but not sure how we treat it, if she can't handle vancomycin > and probiotics. she can not shower, or brush her teeth or do any school work > every time she gets close to doing anyone of these chores, she said her > brain just goes bland and it turns off. this kid tries so hard. any advice > is soooooo welcome. >

April 27, 2012

Thanks Deb. We see an LLMD in conneticut. I feel so close to getting my girl

better but keeping up on all of this blood work is tough. I have had so much

done by so many specialists! what do you feel are the most important tests to

have and i will sift over all my paperwork? Right now, we know that she has the

following:

She has low IgE and IgG4

Abnormal EEG, but not seizures,

High B6

Cam Kinase 166

Restless leg syndrome.

Possitive for Bartonella/Lyme.

Cholesterol levels high, i think.

High triglicerides

Clostridia

Low Vitamin D

C6772T MTHR mutation (whatever that means)

I have her on:

12mg. lamictal

15mg. prozac

minocycline not full dose

small dose bactrim...cant get it into her. too mean for months. dr. lowered

3mg. seroquel

1mg. melatonin

culturellle

i am going to start vancomycen soon.

believe it or not...the culturelle is helping with SEVERE sleep issues, but she

is very impulsive on it. i know its only 10billion, but she reacts on the

smallest dose of things.

i ordered custom probiotics and florastor.

silly question...is the culturelle helping with clostridia or her yeast over

load? is clostridia a yeast or bad bacteria. the vanco i know is the antibiotic.

my take is the vanco. is killing bad bacteria, and we get probiotics into their

gut to replace this bad bacteria. the probiotics are replacing yeast too, but

what do we use to kill the yeast. as u can tell, i am just able to start with

this gut stuff. she was just too sick and aggressive on all of this stuff.

thanks for your help.

sorry about all the questions, but u seem very knowledgeable!!!! thank you very

much!!!

> >

> > Hey Lilly,

> >

> > Using a good binder like cholestyromine? Detoxing?

> >

> > Culturelle may not be enough to address systemic yeast. It depends on how

> > bad it is. Or it could be working really well but the die-off could be

> > really bad. (needing binders/good detoxing)

> >

> > Know what her toxic load is??? Need blood tests to know and have to look

> at

> > genetics picture.

> >

> > DId you mean the psychiatrist is treating lyme?

> >

> > I have a great LLMD in CA. Dr B that could help you I think. Debbie

> >

> > -- Saw psychiatrist/Can

> someone

> > give me advice?

> >

> > my 13 yo is being treated for lie/bartonella. no matter what we try, we

> can

> > t bring her out of her " stuck " little world. she is on...

> >

> > minocycline

> > bactrim

> > lamictal

> > prozac

> > melatonin

> >

> > we have culturelle on board for yeast, but it makes her mean and she never

> > stops bouncing of wall.

> > we are going to add vancomycin in for clostridia, but last time we tried

> > this stuff...the doctor took her off cause she was bouncing so much and

> had

> > a hard time breathing. there's a chance that the clostridia is making her

> > look autistic, but not sure how we treat it, if she can't handle

> vancomycin

> > and probiotics. she can not shower, or brush her teeth or do any school

> work

> > every time she gets close to doing anyone of these chores, she said her

> > brain just goes bland and it turns off. this kid tries so hard. any advice

> > is soooooo welcome.

> >

>

April 27, 2012

yes tam. had it all checked. i swear... doctors all scratch their heads over

this child. the top specialist all eventually give up on my child. her symptoms

are so bizarre. i will pm them if ur interested.

> > >

> > > Hey Lilly,

> > >

> > > Using a good binder like cholestyromine? Detoxing?

> > >

> > > Culturelle may not be enough to address systemic yeast. It depends

> > on how

> > > bad it is. Or it could be working really well but the die-off

> > could be

> > > really bad. (needing binders/good detoxing)

> > >

> > > Know what her toxic load is??? Need blood tests to know and have

> > to look at

> > > genetics picture.

> > >

> > > DId you mean the psychiatrist is treating lyme?

> > >

> > > I have a great LLMD in CA. Dr B that could help you I think. Debbie

> > >

> > > -- Saw psychiatrist/

> > Can someone

> > > give me advice?

> > >

> > > my 13 yo is being treated for lie/bartonella. no matter what we

> > try, we can

> > > t bring her out of her " stuck " little world. she is on...

> > >

> > > minocycline

> > > bactrim

> > > lamictal

> > > prozac

> > > melatonin

> > >

> > > we have culturelle on board for yeast, but it makes her mean and

> > she never

> > > stops bouncing of wall.

> > > we are going to add vancomycin in for clostridia, but last time we

> > tried

> > > this stuff...the doctor took her off cause she was bouncing so

> > much and had

> > > a hard time breathing. there's a chance that the clostridia is

> > making her

> > > look autistic, but not sure how we treat it, if she can't handle

> > vancomycin

> > > and probiotics. she can not shower, or brush her teeth or do any

> > school work

> > > every time she gets close to doing anyone of these chores, she

> > said her

> > > brain just goes bland and it turns off. this kid tries so hard.

> > any advice

> > > is soooooo welcome.

> > >

> >

>

April 27, 2012

Just wanted to say that we focused highly on things for inflammation, to

protect nerves, and to mop up daily toxins. Since you are on

prescriptions, you will need to consult about what is ok for you to use,

but for us, we used lots of things at the same time, like Turmeric,

coconut products, Modifilan, and many more. For my family, this has

been the most important thing to do to get the symptoms under control.

I stopped taking my boy to a psychiatrist after nine years of very

little progress and biomed doing immense progress in just a few days.

Love and prayers,

Heidi N

April 27, 2012

Hi Lilly,My son sounds exsactly like your daughter.The

cholestryomine makes my son sick.I have been running state to state

for 12 yrs. now to the Nids,Dan,naturalpaths,Chinese

meds,NAET,LLMD,Cranial sacral,every normal

specialis:gastro,heart,reumitologist,psych.,I know I am missing

more.Thats what we do daily almost.I am determined to get him well

..But what I want to say is I am now doing all the DNA testing myself

cause no dr. would do it.I got the Amy Yasko,23 and me,and the

Genovations DetoxiGenomic Profile.I am going to take these to

Dr. Boles(medical geneticist studing pedeatric disorders like

our children(what I think my son may have) at Los angelas Childrens

Hospital.(Again he is self pay because we don't have california

medicaid )I don't know if I am doing the right thing,(does he know

what to do once he has the info. on the childrens DNA,I am not

sure)I look forward to other comments from others with children that

can't take ANYTHING and is sick all the time.When my son has his

worste days I take him to the emergency room and beg for intravaniou

fluids.Sometimes that takes a slight edge off his rediculously

painfull,uncomfortable life. Tammy F.

yes tam. had it all checked. i swear... doctors all

scratch their heads over this child. the top specialist

all eventually give up on my child. her symptoms are so

bizarre. i will pm them if ur interested.

> > >

> > > Hey Lilly,

> > >

> > > Using a good binder like cholestyromine?

Detoxing?

> > >

> > > Culturelle may not be enough to address

systemic yeast. It depends

> > on how

> > > bad it is. Or it could be working really

well but the die-off

> > could be

> > > really bad. (needing binders/good detoxing)

> > >

> > > Know what her toxic load is??? Need blood

tests to know and have

> > to look at

> > > genetics picture.

> > >

> > > DId you mean the psychiatrist is treating

lyme?

> > >

> > > I have a great LLMD in CA. Dr B that could

help you I think. Debbie

> > >

> > > --

Saw psychiatrist/

> > Can someone

> > > give me advice?

> > >

> > > my 13 yo is being treated for

lie/bartonella. no matter what we

> > try, we can

> > > t bring her out of her "stuck" little

world. she is on...

> > >

> > > minocycline

> > > bactrim

> > > lamictal

> > > prozac

> > > melatonin

> > >

> > > we have culturelle on board for yeast, but

it makes her mean and

> > she never

> > > stops bouncing of wall.

> > > we are going to add vancomycin in for

clostridia, but last time we

> > tried

> > > this stuff...the doctor took her off cause

she was bouncing so

> > much and had

> > > a hard time breathing. there's a chance

that the clostridia is

> > making her

> > > look autistic, but not sure how we treat

it, if she can't handle

> > vancomycin

> > > and probiotics. she can not shower, or

brush her teeth or do any

> > school work

> > > every time she gets close to doing anyone

of these chores, she

> > said her

> > > brain just goes bland and it turns off.

this kid tries so hard.

> > any advice

> > > is soooooo welcome.

> > >

> >

>

April 27, 2012

My son has been in pain for many years. Just this last year, we have found some things that agree with him and he is getting better. It is amazing to see the kids come to life when they don't have to deal with pain continuously.My son is allergic to so many foods. Coconut, tumeric, oregano, and many things people use to help their kids, cause my son severe pain. He only has 9 or 10 foods that he can eat or he gets pain.He has been on vancomycin, Acyclovir, paxil, and ketokonazole quite a while (I know that is not good for him, but until his immune system can fight on his own, he has to be). We started him on GCMaF in the winter for high nagalase. That has helped tremendously. Recently started MMS using Kerri 's protocal. That is

also helping greatly. I think we have to be very careful with sensitive kids not to give them things they are allergic/sensitive to. I know if I gave him a flake of coconut oil, he would revert back to severe pain and appearing severely autistic within 15 minutes.Hope this helps. My son is almost 7, and it has taken me years, hundreds of thousands of dollard, and my marriage to finally find something that agrees with my son.God bless you all for not stopping. Leann

April 27, 2012

Tammy. They r truly similar. Can we talk privately via email?

> > > > >

> > > > > Hey Lilly,

> > > > >

> > > > > Using a good binder like cholestyromine? Detoxing?

> > > > >

> > > > > Culturelle may not be enough to address systemic yeast. It depends

> > > > on how

> > > > > bad it is. Or it could be working really well but the die-off

> > > > could be

> > > > > really bad. (needing binders/good detoxing)

> > > > >

> > > > > Know what her toxic load is??? Need blood tests to know and have

> > > > to look at

> > > > > genetics picture.

> > > > >

> > > > > DId you mean the psychiatrist is treating lyme?

> > > > >

> > > > > I have a great LLMD in CA. Dr B that could help you I think. Debbie

> > > > >

> > > > > -- Saw psychiatrist/

> > > > Can someone

> > > > > give me advice?

> > > > >

> > > > > my 13 yo is being treated for lie/bartonella. no matter what we

> > > > try, we can

> > > > > t bring her out of her " stuck " little world. she is on...

> > > > >

> > > > > minocycline

> > > > > bactrim

> > > > > lamictal

> > > > > prozac

> > > > > melatonin

> > > > >

> > > > > we have culturelle on board for yeast, but it makes her mean and

> > > > she never

> > > > > stops bouncing of wall.

> > > > > we are going to add vancomycin in for clostridia, but last time we

> > > > tried

> > > > > this stuff...the doctor took her off cause she was bouncing so

> > > > much and had

> > > > > a hard time breathing. there's a chance that the clostridia is

> > > > making her

> > > > > look autistic, but not sure how we treat it, if she can't handle

> > > > vancomycin

> > > > > and probiotics. she can not shower, or brush her teeth or do any

> > > > school work

> > > > > every time she gets close to doing anyone of these chores, she

> > > > said her

> > > > > brain just goes bland and it turns off. this kid tries so hard.

> > > > any advice

> > > > > is soooooo welcome.

> > > > >

> > > >

> > >

> >

>

April 27, 2012

Leann,

I'm just wondering. Do you think the coconut and oregano cause him pain because these things are anti-bacterial/anti-viral and some say anti-fungal? You may be killing something and it may be too much or you may need the detoxing/binding with it to handle the toxic overload. Anytime you kill this will happen and for some far worse than others....not a bad thing but other things must be done to clean up the fallout. Just wondering. Have you done zyto or some type of biofeedback? I'm wondering about EEF's (some call perverse energy) because that causes so much pain for some. The PEMF device has been an answer to prayer for my son's chronic pain. Deb

Re: Saw psychiatrist/Can someone give me advice?

My son has been in pain for many years. Just this last year, we have found some things that agree with him and he is getting better. It is amazing to see the kids come to life when they don't have to deal with pain continuously.

My son is allergic to so many foods. Coconut, tumeric, oregano, and many things people use to help their kids, cause my son severe pain. He only has 9 or 10 foods that he can eat or he gets pain.

He has been on vancomycin, Acyclovir, paxil, and ketokonazole quite a while (I know that is not good for him, but until his immune system can fight on his own, he has to be). We started him on GCMaF in the winter for high nagalase. That has helped tremendously. Recently started MMS using Kerri 's protocal. That is also helping greatly.

I think we have to be very careful with sensitive kids not to give them things they are allergic/sensitive to. I know if I gave him a flake of coconut oil, he would revert back to severe pain and appearing severely autistic within 15 minutes.

Hope this helps. My son is almost 7, and it has taken me years, hundreds of thousands of dollard, and my marriage to finally find something that agrees with my son.

God bless you all for not stopping.

Leann

April 28, 2012

Flagyl will eliminate restless leg syndrome and also likely night waking while

killing clostridia, where I have not found oral vanco to do this.

Augmentin may help with the PANDAS symptoms. Our LLMD feels that the CamKinase

can be from bartonella as well as strep, so we use bactrim for bartonella in

addition to augmentin for strep. Both have been good for my son.

flagyl brought down my triglycerides as well.

Caryn

> > >

> > > Hey Lilly,

> > >

> > > Using a good binder like cholestyromine? Detoxing?

> > >

> > > Culturelle may not be enough to address systemic yeast. It depends on how

> > > bad it is. Or it could be working really well but the die-off could be

> > > really bad. (needing binders/good detoxing)

> > >

> > > Know what her toxic load is??? Need blood tests to know and have to look

> > at

> > > genetics picture.

> > >

> > > DId you mean the psychiatrist is treating lyme?

> > >

> > > I have a great LLMD in CA. Dr B that could help you I think. Debbie

> > >

> > > -- Saw psychiatrist/Can

> > someone

> > > give me advice?

> > >

> > > my 13 yo is being treated for lie/bartonella. no matter what we try, we

> > can

> > > t bring her out of her " stuck " little world. she is on...

> > >

> > > minocycline

> > > bactrim

> > > lamictal

> > > prozac

> > > melatonin

> > >

> > > we have culturelle on board for yeast, but it makes her mean and she never

> > > stops bouncing of wall.

> > > we are going to add vancomycin in for clostridia, but last time we tried

> > > this stuff...the doctor took her off cause she was bouncing so much and

> > had

> > > a hard time breathing. there's a chance that the clostridia is making her

> > > look autistic, but not sure how we treat it, if she can't handle

> > vancomycin

> > > and probiotics. she can not shower, or brush her teeth or do any school

> > work

> > > every time she gets close to doing anyone of these chores, she said her

> > > brain just goes bland and it turns off. this kid tries so hard. any advice

> > > is soooooo welcome.

> > >

> >

>

April 28, 2012

We have used modifilan with antibiotics. I did usually try to give them after

the dose, like 30 to 60 minutes.

>

> Just wanted to say that we focused highly on things for inflammation, to

> protect nerves, and to mop up daily toxins. Since you are on

> prescriptions, you will need to consult about what is ok for you to use,

> but for us, we used lots of things at the same time, like Turmeric,

> coconut products, Modifilan, and many more. For my family, this has

> been the most important thing to do to get the symptoms under control.

> I stopped taking my boy to a psychiatrist after nine years of very

> little progress and biomed doing immense progress in just a few days.

>

> Love and prayers,

>

> Heidi N

>

April 28, 2012

I think the iv fluids may contain 5 to 50 mcg of al....so I always assumed my

little kid was getting the higher dose. He was a whole lot healthier when I

shut the door on conventional docs and jumped off a cliff with a herbalist.

We have beat genetics, and biotoxin genes....cholestrymanine can be tough and

our doc had him start at tinsy doses....one thing that may have helped with neg

symptoms was an intestinal tune up product that was a staple and it contained

clay as well as many other things.

Fun times....dr.bens mthfr site has some interesting research on what blocks

folate cycles.

Sent from my iPad

April 28, 2012

At my house, we usually use 4 things or more daily to reduce

inflammation, protect nerves and mop up daily toxins.

Love and prayers,

Heidi N

We have used modifilan with antibiotics. I did usually try to give them

after the dose, like 30 to 60 minutes.