CFS

[Guest guest]

Pam, I have been taking Temazepam for probably 2 years. I started with just one and then went to two. I also take Gabapentin (2 also) for rls. It takes that much to put me to sleep and sometimes that isn't enough. I hate it but don't have much choice right now. Thanks for your reply. Shirley Godbout

CFS

Hi Everyone! My name is Barbara and I am a soon to be 52 yr old woman who has had CFS for 4 1/2 years now. Needless to say, it has been a very difficult and life changing 4 years. I am doing better now, still not well enough to work again, but certainly not as ill as I was the first 2 years. I have tried so many healing remedies both Traditional and Eastern and have been to many CFS Doctors. I live in NJ(Near NYC). If anybody has any questions, since I have tried so many things, please feel free to email and I will be happy to offer my knowledge and support. I am also a Social Worker by profession although currently on disability. I try to stay as positive as I can and pace myself throughout my days. Stay warm tonight, it's snowy out there here in NJ!Peace and good health,Barbara

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[Guest guest]

Dear Jeff

Have they told you your epstein barr virus viral load?

Are you taking Sustiva or Atripla?  Some people have impaired REM sleep cycles with it.

Have you been sen to a sleep lab to see if it is sleep apnea? How about checking your testosterone, adrenals and thyroid?

Some of us have adrenal insufficiency.  It is very hard to diagnose. Our adrenal glands may not be producing enough cortisone to "wake up up" and give us energy.

Sleep apnea is probably very common in HIV but we have no studies that show incidence rates.  I have seen people practically "waking up to life" after they start a CPAP pressurized air machine to help them reach high oxigen levels in the blood while they sleep.

There are drugs like Provigil that can help some get some energy.   But it is better to get your own body to make its own.

I suffer from fatigue weekly and it is my number one quality of life issue.  I am about to start a CPAP soon (I tried it years ago but did not get used to it, but they have newer types that offer easier adherence)

I hope this helps

CFS

Along with my many other health issues, I have now been diagnosed with Chronic Fatigue Syndrome. Does anyone else have this diagnosis? How bad off are you? On a scale of 1-10, with 10 being the worst, I am between an 8 and 9 on most days. I am currently off work, and go to see a specialist on Wednesday. Thanks for any input!

Jeff

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[Guest guest]

I have seen a video of a guy in youtube had cfs and had it gone with only using the zapper (blood electrifier)Sent from my BlackBerry® smartphone from Zain KuwaitFrom: " B" <probeoy@...>Date: Fri, 02 Oct 2009 01:28:37 -0000< >Subject: CFS Hi all,Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck Protocol?My son has CFS and any info welcome.Thank you in advance.

[Guest guest]

>

> I have seen a video of a guy in youtube had cfs and had it gone with only

using the zapper (blood electrifier)

> Sent from my BlackBerry® smartphone from Zain Kuwait

>

> CFS

>

> Hi all,

> Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck

Protocol?

>

> My son has CFS and any info welcome.

>

Thank you, I'll have a look at the video.

> Thank you in advance.

>

[Guest guest]

hey if you find the video please give us all the link so we can be encouraged

too )

> >

> > I have seen a video of a guy in youtube had cfs and had it gone with only

using the zapper (blood electrifier)

> > Sent from my BlackBerry® smartphone from Zain Kuwait

> >

> > CFS

> >

> > Hi all,

> > Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck

Protocol?

> >

> > My son has CFS and any info welcome.

> >

>

> Thank you, I'll have a look at the video.

> > Thank you in advance.

> >

>

[Guest guest]

You might want to google guaifenesin/fibro and read up the Dr. St. Amands

prodocol. He believes fibromyalgia and CFS are the same illness and gives the

science behind the illness and a protocol that helps 90 or more % of his

patients.

I, myself, am dx with CFS and have done Beck's protocol. It seemed to have

helped me a lot and I truly thought I had it beat. However, over the years it

came back with a vengence and now I'm trying the guaifenesin protocol. You

really have to read up on it, tho, because if you don't eliminate you household

from products with salicylates (as the will block the effectiveness of the guai)

for the protocol to work. Otherwise you are just wasting you time.

The Beck protocol seems to help but not cure.

Gail

>

> Hi all,

> Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck

Protocol?

>

> My son has CFS and any info welcome.

>

> Thank you in advance.

>

[Guest guest]

Thank you for the feedback Gail, will look it up.

R.

From: wanda85929 <wanda85929@...>Subject: Re: CFS Received: Saturday, 3 October, 2009, 5:38 AM

You might want to google guaifenesin/ fibro and read up the Dr. St. Amands prodocol. He believes fibromyalgia and CFS are the same illness and gives the science behind the illness and a protocol that helps 90 or more % of his patients.I, myself, am dx with CFS and have done Beck's protocol. It seemed to have helped me a lot and I truly thought I had it beat. However, over the years it came back with a vengence and now I'm trying the guaifenesin protocol. You really have to read up on it, tho, because if you don't eliminate you household from products with salicylates (as the will block the effectiveness of the guai) for the protocol to work. Otherwise you are just wasting you time.The Beck protocol seems to help but not cure.Gail>> Hi all,> Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck Protocol?> > My son has CFS and any info welcome.> > Thank you in advance.>

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[Guest guest]

Dr. Amand has a book out called, " What Your Doctor May Not Tell You About

Fibromyalgia. " It's so interesting because it goes into the science of the

illness.

According to him, it's a genetic defect in the renal area where the kidneys do

not eliminate phosphate sufficiently and thus it is reabsorbed into the cells

causing the symptoms.

I'm curious if you don't mind, are there others in the family that have any

symptoms some thinking perhaps it's arthritis? Sometimes there will be nobody

else in the family, but very often there will be more and sometimes even the

whole family will be afflicted with it!Did your son have growing pains before

puberty as a child? Any spaced out brain stuff? Any bladder problems? IBS?

All these are symptoms experienced to a lesser degree before it turns into full

blown cfs/fibro. Does he also suffer from hypoglycemia? Although, not the same

disease, symptoms are a lot a like and can mimic CFS. Many have both and so

addressing both are important. Need to follow a HG diet.

Many do get relief with the Beck protocol, but I have found it to be incomplete

for me. Knowing (if Dr. Amand is correct) about the genetic aspect of the

illness and how to truly treat it seems to bring very good results while

eliminating the relapses. All one has to do is stay away from products with

salicylates in them, find your individual correct dose of the guai, and follow

the diet plan if you are HG.

The hardest part is doing your homework and learning what the salicylates are

in. Also the first year, while the phosphates are being release from the body,

you will experience aggravaited symptoms. I've been experiencing pain in weird

places that I never knew or experienced before starting on the guai. I've also

found the MMS drops work really great for helping with the pain.

Hug your son.

Tenderly,

Gail

> >

> > Hi all,

> > Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck

Protocol?

> >

> > My son has CFS and any info welcome.

> >

> > Thank you in advance.

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

________________________________________________________________________________\

__

> Get more done like never before with 7 Mail.

> Learn more: http://au.overview.mail./

>

[Guest guest]

Can't thank you enough Gail.

Have passed your info onto and he will follow up (I'll make sure he does)

He did not have growing pains as far as I can remember and there is no family history on my side. His mothers side however has a history of arthritis.

The Beck protocol has helped most of all and appears to be still improving so will stay on it for at least another year and then a maintenance program.

Will research your info to the fullest and thank you so much again.

R.

Dr. Amand has a book out called, "What Your Doctor May Not Tell You About Fibromyalgia. " It's so interesting because it goes into the science of the illness.According to him, it's a genetic defect in the renal area where the kidneys do not eliminate phosphate sufficiently and thus it is reabsorbed into the cells causing the symptoms. I'm curious if you don't mind, are there others in the family that have any symptoms some thinking perhaps it's arthritis? Sometimes there will be nobody else in the family, but very often there will be more and sometimes even the whole family will be afflicted with it!Did your son have growing pains before puberty as a child? Any spaced out brain stuff? Any bladder problems? IBS? All these are symptoms experienced to a lesser degree before it turns into full blown cfs/fibro. Does he also suffer from hypoglycemia? Although, not the same disease, symptoms are a lot a like and can mimic CFS. Many have

both and so addressing both are important. Need to follow a HG diet.Many do get relief with the Beck protocol, but I have found it to be incomplete for me. Knowing (if Dr. Amand is correct) about the genetic aspect of the illness and how to truly treat it seems to bring very good results while eliminating the relapses. All one has to do is stay away from products with salicylates in them, find your individual correct dose of the guai, and follow the diet plan if you are HG. The hardest part is doing your homework and learning what the salicylates are in. Also the first year, while the phosphates are being release from the body, you will experience aggravaited symptoms. I've been experiencing pain in weird places that I never knew or experienced before starting on the guai. I've also found the MMS drops work really great for helping with the pain.Hug your son.Tenderly,Gail> >> > Hi all,> > Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck

Protocol?> > > > My son has CFS and any info welcome.> > > > Thank you in advance.> >> > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> Get more done like never before with 7 Mail.> Learn more: http://au.overview. mail.. com/>

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[Guest guest]

If the CFS is caused by a bloodborne microbe (such as Epstein Barr virus) then the Beck units are the way to go. see http://www.dragonfly75.com/eng/cfids.html

[Guest guest]

Thank you for your input ,

has had some success with the Beck protocol and is still on it.

Will let you know how it goes down the track.

Thanks again.

RB

If the CFS is caused by a bloodborne microbe (such as Epstein Barr virus) then the Beck units are the way to go. see http://www.dragonfl y75.com/eng/ cfids.html

Get more done like never before with 7 Mail. Learn more.

[Guest guest]

I do computerized electrodermal screening. Most of the people I have screened because of CFS had massive overgrowth of fungus.

I had CFS and was treated by a chiropractor for fungus overgrowth. It took 3 months for me to feel better. I had had low body temperature, fingerprints that started to disappear, extreme fatigue.

I am finding Lyme spirochetes in 60% of the people I screen currently. Spirochetes are difficult to treat because they can hide in the cells of the body. VERY Heavy use of salt and vitamin C has been found to help.

Lyme spirochetes (there are many varieties and not just the ones from ticks - all biting insects carry these) have been found in many people with chronic illnesses. These critters could well be the cause of the muscle pain since they are like microscopic worms crawling through your body.

The spirochetes can cause a variety of symptoms from ADHD to CFS to arthritis

One woman thought she had CFS actually had pesticide poisoning.

From: mail <probeoy@...>Subject: Re: Re: CFS Date: Friday, October 2, 2009, 9:28 PM

Can't thank you enough Gail.

Have passed your info onto and he will follow up (I'll make sure he does)

He did not have growing pains as far as I can remember and there is no family history on my side. His mothers side however has a history of arthritis.

The Beck protocol has helped most of all and appears to be still improving so will stay on it for at least another year and then a maintenance program.

Will research your info to the fullest and thank you so much again.

R.

Dr. Amand has a book out called, "What Your Doctor May Not Tell You About Fibromyalgia. " It's so interesting because it goes into the science of the illness.According to him, it's a genetic defect in the renal area where the kidneys do not eliminate phosphate sufficiently and thus it is reabsorbed into the cells causing the symptoms. I'm curious if you don't mind, are there others in the family that have any symptoms some thinking perhaps it's arthritis? Sometimes there will be nobody else in the family, but very often there will be more and sometimes even the whole family will be afflicted with it!Did your son have growing pains before puberty as a child? Any spaced out brain stuff? Any bladder problems? IBS? All these are symptoms experienced to a lesser degree before it turns into full blown cfs/fibro. Does he also suffer from hypoglycemia? Although, not the same disease, symptoms are a lot a like and can mimic CFS. Many have

both and so addressing both are important. Need to follow a HG diet.Many do get relief with the Beck protocol, but I have found it to be incomplete for me. Knowing (if Dr. Amand is correct) about the genetic aspect of the illness and how to truly treat it seems to bring very good results while eliminating the relapses. All one has to do is stay away from products with salicylates in them, find your individual correct dose of the guai, and follow the diet plan if you are HG. The hardest part is doing your homework and learning what the salicylates are in. Also the first year, while the phosphates are being release from the body, you will experience aggravaited symptoms. I've been experiencing pain in weird places that I never knew or experienced before starting on the guai. I've also found the MMS drops work really great for helping with the pain.Hug your son.Tenderly,Gail> >> > Hi all,> > Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck Protocol?> > > > My son has CFS and any info welcome.> > > > Thank you in

advance.> >> > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> Get more done like never before with 7 Mail.> Learn more: http://au.overview. mail.. com/>

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[Guest guest]

Another thing you can tell your son is to try staying away from gluten food.

Some thought they had CFS only to go off gluten and then recovery. It can

really make you wasted if your sensitive to it.

Gail

> > >

> > > Hi all,

> > > Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the

Beck Protocol?

> > >

> > > My son has CFS and any info welcome.

> > >

> > > Thank you in advance.

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ _________ _________ _________ _

> > Get more done like never before with 7 Mail.

> > Learn more: http://au.overview. mail.. com/

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

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>

________________________________________________________________________________\

__

> Get more done like never before with 7 Mail.

> Learn more: http://au.overview.mail./

>

[Guest guest]

Thank you so much for your advice and effort. Will certainly look into it.

RB

I do computerized electrodermal screening. Most of the people I have screened because of CFS had massive overgrowth of fungus.

I had CFS and was treated by a chiropractor for fungus overgrowth. It took 3 months for me to feel better. I had had low body temperature, fingerprints that started to disappear, extreme fatigue.

I am finding Lyme spirochetes in 60% of the people I screen currently. Spirochetes are difficult to treat because they can hide in the cells of the body. VERY Heavy use of salt and vitamin C has been found to help.

Lyme spirochetes (there are many varieties and not just the ones from ticks - all biting insects carry these) have been found in many people with chronic illnesses. These critters could well be the cause of the muscle pain since they are like microscopic worms crawling through your body.

The spirochetes can cause a variety of symptoms from ADHD to CFS to arthritis

One woman thought she had CFS actually had pesticide poisoning.

From: mail <probeoy (DOT) com>Subject: Re: [beck-blood- electrification] Re: CFSBeck-blood-electrif ication@gro ups.comDate: Friday, October 2, 2009, 9:28 PM

Can't thank you enough Gail.

Have passed your info onto and he will follow up (I'll make sure he does)

He did not have growing pains as far as I can remember and there is no family history on my side. His mothers side however has a history of arthritis.

The Beck protocol has helped most of all and appears to be still improving so will stay on it for at least another year and then a maintenance program.

Will research your info to the fullest and thank you so much again.

R.

Dr. Amand has a book out called, "What Your Doctor May Not Tell You About Fibromyalgia. " It's so interesting because it goes into the science of the illness.According to him, it's a genetic defect in the renal area where the kidneys do not eliminate phosphate sufficiently and thus it is reabsorbed into the cells causing the symptoms. I'm curious if you don't mind, are there others in the family that have any symptoms some thinking perhaps it's arthritis? Sometimes there will be nobody else in the family, but very often there will be more and sometimes even the whole family will be afflicted with it!Did your son have growing pains before puberty as a child? Any spaced out brain stuff? Any bladder problems? IBS? All these are symptoms experienced to a lesser degree before it turns into full blown cfs/fibro. Does he also suffer from hypoglycemia? Although, not the same disease, symptoms are a lot a like and can mimic CFS. Many have

both and so addressing both are important. Need to follow a HG diet.Many do get relief with the Beck protocol, but I have found it to be incomplete for me. Knowing (if Dr. Amand is correct) about the genetic aspect of the illness and how to truly treat it seems to bring very good results while eliminating the relapses. All one has to do is stay away from products with salicylates in them, find your individual correct dose of the guai, and follow the diet plan if you are HG. The hardest part is doing your homework and learning what the salicylates are in. Also the first year, while the phosphates are being release from the body, you will experience aggravaited symptoms. I've been experiencing pain in weird places that I never knew or experienced before starting on the guai. I've also found the MMS drops work really great for helping with the pain.Hug your son.Tenderly,Gail> >> > Hi all,> > Has anyone had experience with CFS (Cronic Fatigue Syndrome) using the Beck Protocol?> > > > My son has CFS and any info welcome.> > > > Thank you in

advance.> >> > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> Get more done like never before with 7 Mail.> Learn more: http://au.overview. mail.. com/>

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[Guest guest]

Hypothesis: Chronic fatigue syndrome is caused by dysregulation of hydrogen

sulfide metabolism

http://cfids-cab.org/MESA/Lemle.pdf

Fermentation in the gut and CFS

http://drmyhill.co.uk/wiki/Gut_dysbiosis_-_having_the_wrong_bugs_in_your_gut

http://www.chronicfatiguetreatments.com/wordpress/treatments/hydrogen-sulfide-an\

d-chronic-fatigue/

[Guest guest]

AN, Maybe Cheney came up w theory based on work w patients but Tiedlebaum said

he came upon his conclusions concerning cfs because he had it himself and he

tried different things, and cured himself first, was an intern I think and

constantly fatigued and unable to get restful sleep. I've read his story. I

had an appt to see him but cancelled it finally as it was just too expensive to

take a chance. This was before he closed his practice in MD to focus on his

clinics, supplements and books.

I think alot of doctors become interested after being exposed to something

themselves: Dr Rae, Shoemaker, Tiedlebaum...bunch of them.

Do you go to one of Tiedlebaums CFS clinics?

I went to his clinic in Atlanta, GA before I injured my foot, now it is too

difficult for me to travel.

>

1. My doctor did not only spend a year studying CFS. I said she received a

prestigious Bush fellowship to DO NOTHING BUT study it for a year. I also said

her practice has focused on CFS and FMS. That means she has been studying and

practicing these issues for years. But I suppose that if you want to equate

" real " studying of these issues to numbers of years that a doctor has done so

without seeing patients, none of the other doctors will add up either. Chaney

and Teitelbaum, etc., came up with their protocols in part through their work

with patients.

>

[Guest guest]

Hmmm. That's true, you're right. But the larger picture is that my doctor was

said to have ONLY studied for a year--I was making the point that just because

she hadn't cloistered herself off from her patients longer than that to research

does not mean she hasn't been studying it all along--and that using her clinical

experience, and listening to her patients, I might add, is a form of research. I

suppose Teitelbaum could be disparaged as being " a case study of one " --but I

don't believe that, at all. That's a dismissive thing to say.

Sent from my iPhone

On Feb 5, 2011, at 11:26 PM, " barb b w " <barb1283@...> wrote:

AN, Maybe Cheney came up w theory based on work w patients but Tiedlebaum said

he came upon his conclusions concerning cfs because he had it himself and he

tried different things, and cured himself first, was an intern I think and

constantly fatigued and unable to get restful sleep. I've read his story. I had

an appt to see him but cancelled it finally as it was just too expensive to take

a chance. This was before he closed his practice in MD to focus on his clinics,

supplements and books.

I think alot of doctors become interested after being exposed to something

themselves: Dr Rae, Shoemaker, Tiedlebaum...bunch of them.

Do you go to one of Tiedlebaums CFS clinics?

I went to his clinic in Atlanta, GA before I injured my foot, now it is too

difficult for me to travel.

>

1. My doctor did not only spend a year studying CFS. I said she received a

prestigious Bush fellowship to DO NOTHING BUT study it for a year. I also said

her practice has focused on CFS and FMS. That means she has been studying and

practicing these issues for years. But I suppose that if you want to equate

" real " studying of these issues to numbers of years that a doctor has done so

without seeing patients, none of the other doctors will add up either. Chaney

and Teitelbaum, etc., came up with their protocols in part through their work

with patients.

>

[Guest guest]

I do not believe that Teitelbaum had what everyone else has. He may have had a

slight case of something, but he would not have gone off on a tour across the

country in his car if he did. When you are as sick as we are, hopping in your

car is the last thing you would be able to do.  ( anyways I am speaking about

myself)  I also know several people that went to him  and they had a  big

bill, but no results to go with it. Thousands of dollars were spent and numerous

protocols started all at the same time... resulting in chaos. I have also been

told by people that were wanting to be in his studies that he would not accept

anyone who was diasbled....thus flawing the studies.

----- Original Message -----

From: " Advocate_Now " <advocate_now@...>

[Guest guest]

His clinics are not really following his protocols so it's hard to determine if

they are effective. I have exact examples of how the doctor I saw there was not

following his protocol and I mentioned it to her, but they do their own thing

within certain confined perhaps.

> I do not believe that Teitelbaum had what everyone else has. He may have had a

slight case of something, but he would not have gone off on a tour across the

country in his car if he did. When you are as sick as we are, hopping in your

car is the last thing you would be able to do.  ( anyways I am speaking about

myself)  I also know several people that went to him  and they had a  big

bill, but no results to go with it. Thousands of dollars were spent and numerous

protocols started all at the same time... resulting in chaos. I have also been

told by people that were wanting to be in his studies that he would not accept

anyone who was diasbled....thus flawing the studies.

>

> ----- Original Message -----

> From: " Advocate_Now " <advocate_now@...>

>

[Guest guest]

To clarify, I am not speaking about his clinics, I am speaking about his office

in land. He did not get positive results from several people that I know

that went directly to him and spent thousands of dollars.

His clinics are a whole other thing.. Because they have so much leeway, that is

why I had a heart attack. My doctor caused my heart attack by giving me too much

medication. Even the F & F Headquarters said my doctor didn't have a clue. They

said, " He didn't get it " They were supposedly distressed at the way he treated

me. He diagnosed me as a " hormone patient " when I clearly had CFS, which I

described very specifically on a 24 page questionnaire. I had been in

consult by email for over a year with Dr. Teitelbaum before even stepping in

their doors. If the guru, Dr. Teitelbaum, didn't cure people, how could

doctors with only a few week course in CFS help. Dr. Teitelbaum  said he

would see to it that my doctor never gave out medication in that manner again.

They begged me not to sue because their patients wouldn't have a doctor......

they wouldn't have anyone to fill his position. Actually, Dr. Teitelbaum sent me

on to Dr. Cheney after he tried to undo what his F & F doctor did to me. Dr.

Teitelbaum told me to do things that actually harmed me after the heart attack

and sent me on to Dr. Cheney. So when I say that Dr. Teitelbaum doesn't fully

get this illness, I mean he doesn't fully get this illness because there are so

many subtypes.

The problem.... regular doctors don't get this illness either.... We are

swimming in shark infested waters..........no matter what we do.

Kathi

[] Re: CFS

His clinics are not really following his protocols so it's hard to determine if

they are effective. I have exact examples of how the doctor I saw there was not

following his protocol and I mentioned it to her, but they do their own thing

within certain confined perhaps.