Phosphatidyl choline

[Guest guest]

Jill,

Just to keep the record straight.... yes, the cost of glutathione

is " very reasonable, " as you mention. However, the $30 product

figure I came up with was not for glutathione alone, which is how I

read (or maybe mis-read) your sentence, " Glutathione, I buy myself

for my IV's,... which makes the cost very reasonable (not $30/vial,

but I can't remember the exact cost at this moment).

Re-reading my own post, I thought I had made it clear that the $30

figure included

* two (2) vials of Essentiale N phosphatidylcholine (PC),

* shipping of the PC from Switzerland,

* AND glutathione (for which I used the figure of ~$6, though that

can vary depending on source & quantity ordered, AND how much is

infused, which further varies with each patient -- an issue I didn't

discuss b/c it only affected the final product total by a few

dollars).

As to the infusions, these are nothing like the " normal " IVs that

most people in infusion rooms receive, in which the nurse's

involvement includes hanging the bag, sticking the needle,

periodically checking back over the next few hours as the product is

gradually infused via gravity, etc., etc., just like the scenario

you were laying out... in which the nurse is NOT tied to one

patient's side for the duration but is in fact actually tending to

many patients at the same time. (For which, in my opinion, the $40

figure you quoted is more than reasonable.)

The Kane protocol is very different. First, the doctor or nurse

spends the entire infusion time at the patient's side. Rather than

an IV bag, there are 2 freshly drawn syringes, one w/ the

phosphatidylcholine and the other w/ glutathione. Once the needle

stick is made, the doctor (or nurse) first removes blood from the

vein (at least as much blood as PC), gently agitates the two

together, and then infuses back the entire mixture over the next 3-5

minutes, all the while watching the patient for reactions. Once the

PC is in, the syringes are changed and the doctor then slowly

infuses the glutathione (without removing blood this time) over

another 3-5 minutes, again watching for negative patient reactions

(nausea and weird sensations in the head are the most common) and

slowing down (or even stopping) that infusion if necessary. Once

both products are infused, then of course, the needle is removed,

pressure applied, etc., etc. The entire infusion process takes at

best 20 minutes of dedicated doctor-on-patient time. It can take

even longer when a " good " vein is difficult to locate that day, the

blood doesn't come out easily, or the infusion time for either

product must be made longer b/c of patient reaction.

I can't speak to that young woman's issues w/ Dr. Kane's office in

PA since I haven't been there, although I can guess that, since this

protocol is their bread and butter, they employ a number of

nurses/phlebotomists to do the side-by-side infusion time with the

patients rather than the doctors themselves. According to my notes

from last year, they were charging $140 per IV set. Knowing now

that the products runs ~$30, that would mean that Kane's office was

charging $110 for, I'll say, 40 minutes of dedicated nurse-on-

patient (I'm using 40 minutes to allow for the add'l time the nurses

where I went needed to take my vitals each appt, review my chart and

add to it, prepare the syringes, sit by my side when I had a bad

reaction one time, etc., etc., not to mention all the nickle-and-

diming costs like bandages, tubing, butterfly needles, etc.). Maybe

that woman you mentioned was right to be justifiably angry at $110

for 40 minutes of dedicated nursing time -- what is the going rate

for THAT in Philadelphia? -- but then again maybe she didn't

understand everything that went into the treatment protocol.

Checking my notes to write this, I did see that Kane's consultation

fees are VERY high. Was that perhaps what really got her goat?

I didn't mean for this post to wonder on for so long. Hopefully,

Jill, I've clarified any major misunderstandings you had about the

IV treatments, so you now understand what really goes into it and

what's reasonable to charge.

Trish

--- " jill1313 " <jenbooks13@h...> wrote:

> Hi Trish, thanx for the specifics.

>

> Glutathione, I buy myself for my IV's, with Rx, and bring them

down

> to my doc...which makes the cost very reasonable (not $30/vial,

but I

> can't remember the exact cost at this moment. Shipping is

overnight

> with freezer pak, so if you buy enuf in advance, it becomes

cheaper).

>

> The actual cost charged to insurance for a " nurse's visit "

> (phlebotomist, at most holistic docs) is $40...in an IV room they

> don't usually need to sit with the same person for 20 minutes. I

> don't know how it is with the PC, or plaquex, can you let us

know?

> In normal IV's and even pushes, they can stick you, get you going,

> stick somebody else, get them going, take out somebody's else's

IV,

> and then come back to you as you're all sitting in a comfortable

room

> together. But how much are those phlebotomists/nurses being paid

per

> hour? In any case, it isn't usually the doctor themselves who is

> doing it and that's not how it was described to me by a young

woman

> who had been at Kane's office and was angered by the prices (she

came

> to try my hyperbaric chamber).

[Guest guest]

Hi Trish, okay, $30 for materials makes sense. My recollection of

why she was upset and a few concerns I have:

1) They were recommending twice a day for the PC infusions. I

believe they may have therefore wanted her to get a picc line.

2) They were willing to train " her " doctor but that required him

coming on site for several weeks, to the tune of many thousands of $

(and of course, lost patient time if he leaves his practice for

several weeks--or educates a nurse to do it). As she said, if

somebody has been a nurse/phlebotomist their whole lives, how much

training do they really need for this procedure? It seemed to her

they were gouging where they could

3) This is how I'd heard the procedure goes, as you described it

(from a naturopath friend). It takes a few minutes to do the PC

procedure. Then I guess what you are getting is a glutathione push.

My question that nobody ever answered is what about pulmonary

embolism? Depending on how long the blood is in the syringe

being " gently agitated " , clots can form. Nobody has ever addressed

this and it concerns me as this is a risk. When you draw blood out

of a butterfly needle for an IV, it may go out for about 30 secs at

most...Kane and others have not addressed potential clotting. I knew

a lady who had a pulmonary embolism and almost died because of this

happening during a UVB procedure, wherein blood is drawn out,

irradiated, and infused back in (even tho heparanized). It has to be

properly filtered. Do they heparainize your line, just curious?

Even so, each body has different requirements for heparin and one can

overshoot or undershoot the mark--I know that lady's blood was

heparinized but it was not enough in her case. Admittedly, the blood

involved here is significantly less, nonetheless, 3-5 minutes is a

concern

4) Rolling blood is what I heard it called. Blood can degrade if not

handled very gently. I'm sure they know this nonetheless I wonder if

doctors around the country, and other nurses, really understand.

Where is the line for " gently agitated " --in terms of damaging the

blood?

5) DId you start ozone and PC at the same time? Any sense of what is

doing what--or how both are interacting?

[Guest guest]

P.S. I should add, twice a day is around $300/day, $1500 week, plus

hotel, lodging etc...I think they recommend several weeks of that,

and then if you want to continue it at home, your doctor has to be

trained...you can see where people start to get upset. It is the

same thing with hyperbaric in clinics--you're looking at $150-200

session, sometimes twice a day, recommended for a month--you're

looking at spending as much, including hotel and food and airfare

(unless you live very close, which most people don't) as you would to

buy a small chamber for home use for life.

Another key point is that people who didn't change their diet to low

carb, high fat, from what I read in her book (detoxx book--the one

for physicians), didn't get better. So it would be interesting just

to see what happened if, as Arthur suggests, one switched to a high-

fat, perhaps part raw, primal diet.

[Guest guest]

Hi Jill, I'll try to keep my answers to your questions short... not

something I'm very good at.

> 1) They were recommending twice a day for the PC infusions. I

> believe they may have therefore wanted her to get a picc line.

The protocol calls for twice a WEEK infusions, unless you're

desperately ill or want them more often, the latter being my case

b/c I'd traveled all the way across the country for them (AZ to NC)

and was burning thru a lot of money in hotel costs, etc.

> 2) They were willing to train " her " doctor but that required him

> coming on site for several weeks, to the tune of many thousands of

$

> (and of course, lost patient time if he leaves his practice for

> several weeks--or educates a nurse to do it). As she said, if

> somebody has been a nurse/phlebotomist their whole lives, how much

> training do they really need for this procedure? It seemed to her

> they were gouging where they could

If that's true, then that's patently unreasonable and would make me

angry too. In contrast, the doctor's office in NC where I went,

told me that I just needed to find a doctor/nurse/phlebotomist back

home who would be willing to learn the protocol out of the Detoxx

book, which is exactly what happened (although they did strongly

prefer that I went with a doctor rather than a nurse so that my case

could be monitored). Once back home I found 3 docs who told me they

were willing to do it -- all 3 were already somewhat aware of the

protocol, having heard Dr. Kane speak about it within the past year,

so I didn't even have to persuade them, just negotiate a price for

their services. The doc I chose agreed to let me buy the

products/materials myself, then just charge for his time (very

reasonably, I might add). I also tried to locate a

nurse/phlebotomist, but everyone expressed some concern about their

license.

> 3)

> My question that nobody ever answered is what about pulmonary

> embolism? Depending on how long the blood is in the syringe

> being " gently agitated " , clots can form. Nobody has ever

addressed

> this and it concerns me as this is a risk. When you draw blood

out

> of a butterfly needle for an IV, it may go out for about 30 secs

at

> most...Kane and others have not addressed potential clotting. I

knew

> a lady who had a pulmonary embolism and almost died because of

this

> happening during a UVB procedure, wherein blood is drawn out,

> irradiated, and infused back in (even tho heparanized). It has to

be

> properly filtered. Do they heparainize your line, just curious?

> Even so, each body has different requirements for heparin and one

can

> overshoot or undershoot the mark--I know that lady's blood was

> heparinized but it was not enough in her case. Admittedly, the

blood

> involved here is significantly less, nonetheless, 3-5 minutes is a

> concern

You're right, I've never heard anyone address the clotting/embolism

issue. In the back of my mind that's been a concern of mine all

along (esp'ly after learning that a former boyfriend died last year

from a pulmonary embolism), but I've just been hoping that since the

amount of blood they take out is fairly small (much, much less than

in UVB, which I've done before AND had clotting issues with) and

since the blood is DRAWN DIRECTLY INTO the PC in the same syringe

then infused back very soon thereafter, that that's why the clotting

issue hasn't come up. Does the PC help keep the blood from

clotting? Now you've got me thinking again... maybe I should be

worried... And in answer to heparin, to my knowledge it's not used.

> 4) Rolling blood is what I heard it called. Blood can degrade if

not

> handled very gently. I'm sure they know this nonetheless I wonder

if

> doctors around the country, and other nurses, really understand.

> Where is the line for " gently agitated " --in terms of damaging the

> blood?

I've had 2 nurses and 1 doc do this for me. The verb " agitate "

which I used, doesn't do justice to how carefully my blood/PC combo

has been handle by everyone. Your term rolling is so much better.

> 5) DId you start ozone and PC at the same time? Any sense of what

is

> doing what--or how both are interacting?

I started the ozone first. Took some time off. Then started the

PC. I am now doing both concurrently. Yes, they seem to be

accomplishing some very different yet overlapping things, as one

would expect since the PC is not meant to deal w/ the various

pathogens I'm trying to knock down w/ the ozone. I think they're

working synergistically to some extent, or that's what I tell myself.

Trish

[Guest guest]

Thanx Trish. Your experience sounds very reasonable and its great

the doc let you buy the supplies and only charge for his time.

Perhaps you could ask him about clotting concerns. It is a small

risk, from what I would guess, but a risk nonetheless.

[Guest guest]

Jill,

(1) As of Dec 2003, Kane's office was only open 3 days per week (not

5), which brings the weekly office bill to $900 rather than $1500.

Still a good chunk of money but not as outlandish as the figure you

gave. Further, as to the " continue it at home/your doctor has to be

trained " issue, my last post hopefully addressed that to your

satisfaction. I might add, that when researching this protocol last

year, I made numerous phone calls to both the PA and NC offices to

gather information, making it a point to talk w/ different office

staff each time... While I normally consider myself quite good at

getting people at the other end of the line to work with me, open up

and volunteer a lot of useful information, I truly had problems

finding someone at the PA office I could speak with in that way.

That left me frustrated enough -- though not the only reason -- to

chose not to go there.

(2) As to the diet issue, yes, that is important. Most especially

the fats/oils you consume. My fatty acid profile came back showing

big distortions in optimal fatty acid levels, and a surprising

quantity of renegade and other truly bad fats that are part of my

cell membranes, thus contributing to my poor health. As I'm sure

you're aware, in addition to helping to clear neurotoxins from the

body, the PC infusions are used to rebuild the cellular membranes

throughout out body with the rights fatty acids (PC being the most

predominant fatty acid in the membranes) and that's hard to do if

one is still ingesting competing/bad fats via their diet.

--- " jill1313 " <jenbooks13@h...> wrote:

> P.S. I should add, twice a day is around $300/day, $1500 week,

plus

> hotel, lodging etc...I think they recommend several weeks of that,

> and then if you want to continue it at home, your doctor has to be

> trained...you can see where people start to get upset. It is the

> same thing with hyperbaric in clinics--you're looking at $150-200

> session, sometimes twice a day, recommended for a month--you're

> looking at spending as much, including hotel and food and airfare

> (unless you live very close, which most people don't) as you would

to

> buy a small chamber for home use for life.

>

> Another key point is that people who didn't change their diet to

low

> carb, high fat, from what I read in her book (detoxx book--the one

> for physicians), didn't get better. So it would be interesting

just

> to see what happened if, as Arthur suggests, one switched to a

high-

> fat, perhaps part raw, primal diet.

[Guest guest]

Someone mentioned phosphatidyl choline a couple of months ago. I

started it about 10 days ago. My question: how much are you taking?

How long before you noticed a difference? Anyone who has info on

this, I would appreciate hearing from you.

Carl

Kent,OH (but on the NC coast through March)

[Guest guest]

hi catherine this sounds good yes ours are hard as well i cut them and bring it

out with a calpol syringe i am planning to see goyal soon so will find out more

thanks for the doasges, Isobel ps hadnt thought about melting with a hairdryer x

>

> Hi Isobel - don't know your version but we use PhosChol which is incredibly

hard

> to squeeze out but mean't to be a good one. I think I read on Recovery from

> Autism that you should be using 2700mg per day to get any effect ie 3 x the

> 900mg caps we use. Currently we only use 2 caps since its v. pricey.

Breakspeare

> have a new one which you don't have to use the hairdryer to open which Goyal

> said was v. good but is about £1 per capsule!!

>

>

>

> ________________________________

>

> To: Autism-Biomedical-Europe

> Sent: Wed, 12 January, 2011 19:48:06

> Subject: phosphatidyl choline

>

>

> hi all

> anyone got any ideas on dosage of phosphatidyl choline as I dont think we are

> giving enough

> we give one cap daily 420mg by thorne

> many thanks, Isobel x

>

[Guest guest]

hi catherine this sounds good yes ours are hard as well i cut them and bring it

out with a calpol syringe i am planning to see goyal soon so will find out more

thanks for the doasges, Isobel ps hadnt thought about melting with a hairdryer x

>

> Hi Isobel - don't know your version but we use PhosChol which is incredibly

hard

> to squeeze out but mean't to be a good one. I think I read on Recovery from

> Autism that you should be using 2700mg per day to get any effect ie 3 x the

> 900mg caps we use. Currently we only use 2 caps since its v. pricey.

Breakspeare

> have a new one which you don't have to use the hairdryer to open which Goyal

> said was v. good but is about £1 per capsule!!

>

>

>

> ________________________________

>

> To: Autism-Biomedical-Europe

> Sent: Wed, 12 January, 2011 19:48:06

> Subject: phosphatidyl choline

>

>

> hi all

> anyone got any ideas on dosage of phosphatidyl choline as I dont think we are

> giving enough

> we give one cap daily 420mg by thorne

> many thanks, Isobel x

>

[Guest guest]

hi nevin i dont think my son will react like your son but this sounds a much

better way to give it.... my son never reacted to anything except once i gave

too high dose of enhanza.many thanks, Isobel ps could you half your dose maybe

the low and slow method to help your son?or maybe give it with insitol?just an

idea.....

> >

> > hi all

> > anyone got any ideas on dosage of phosphatidyl choline as I dont think we

are giving enough

> > we give one cap daily 420mg by thorne

> > many thanks, Isobel x

> >

>

[Guest guest]

hi nevin i dont think my son will react like your son but this sounds a much

better way to give it.... my son never reacted to anything except once i gave

too high dose of enhanza.many thanks, Isobel ps could you half your dose maybe

the low and slow method to help your son?or maybe give it with insitol?just an

idea.....

> >

> > hi all

> > anyone got any ideas on dosage of phosphatidyl choline as I dont think we

are giving enough

> > we give one cap daily 420mg by thorne

> > many thanks, Isobel x

> >

>

[Guest guest]

whats the glutamate theory? can it have anything to do with speech issues?

> To: Autism-Biomedical-Europe > Date: Sat, 15 Jan 2011 13:06:42 +0000> Subject: Re: phosphatidyl choline> > > Hi Alison, > Yes, I am waiting now.My son fits very well in her glutamate thesis....I am looking forward to see the test result and hoping to implement the treatment.Let's share how are we doing as you are going to be a new beginner like me..I started giving GABA but I have to read through the recommended DVD and her book again.> Best wishes> Nevin> > > > >> > > > hi all> > > > anyone got any ideas on dosage of phosphatidyl choline as I dont think we> > > are giving enough> > > > we give one cap daily 420mg by thorne> > > > many thanks, Isobel x> > > >> > >> > > > > >> >> > > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

[Guest guest]

whats the glutamate theory? can it have anything to do with speech issues?

> To: Autism-Biomedical-Europe > Date: Sat, 15 Jan 2011 13:06:42 +0000> Subject: Re: phosphatidyl choline> > > Hi Alison, > Yes, I am waiting now.My son fits very well in her glutamate thesis....I am looking forward to see the test result and hoping to implement the treatment.Let's share how are we doing as you are going to be a new beginner like me..I started giving GABA but I have to read through the recommended DVD and her book again.> Best wishes> Nevin> > > > >> > > > hi all> > > > anyone got any ideas on dosage of phosphatidyl choline as I dont think we> > > are giving enough> > > > we give one cap daily 420mg by thorne> > > > many thanks, Isobel x> > > >> > >> > > > > >> >> > > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

[Guest guest]

Which one of the recommended DVD's do you mean?  I too started a little GABA but felt I saw negative effects - not immensly but enough to give me a gut feeling.  I may try it again as it could have been coincidence.

We have quite a lot of stage 1 supplements in place but need to add something for liver and kidney support - what do you use?Have you done any of the baseline testing.  Do you know what his glutamate/GABA balance is like - I still a bit confused about this.

Charlie only tests so far have been hospital blood amino acid test which showed low glutamine.  I really don't know the relevance of this.I've not yet been able to get proper urine samples for to nutritional test standards .  Some require overnight fasting and he still breastfeed in night - we'll be working towards this soon though.

BWAlison

 

Hi Alison,

Yes, I am waiting now.My son fits very well in her glutamate thesis....I am looking forward to see the test result and hoping to implement the treatment.Let's share how are we doing as you are going to be a new beginner like me..I started giving GABA but I have to read through the recommended DVD and her book again.

Best wishes

Nevin

> > >

> > > hi all

> > > anyone got any ideas on dosage of phosphatidyl choline as I dont think we

> > are giving enough

> > > we give one cap daily 420mg by thorne

> > > many thanks, Isobel x

> > >

> >

> >

> >

>

[Guest guest]

Which one of the recommended DVD's do you mean?  I too started a little GABA but felt I saw negative effects - not immensly but enough to give me a gut feeling.  I may try it again as it could have been coincidence.

We have quite a lot of stage 1 supplements in place but need to add something for liver and kidney support - what do you use?Have you done any of the baseline testing.  Do you know what his glutamate/GABA balance is like - I still a bit confused about this.

Charlie only tests so far have been hospital blood amino acid test which showed low glutamine.  I really don't know the relevance of this.I've not yet been able to get proper urine samples for to nutritional test standards .  Some require overnight fasting and he still breastfeed in night - we'll be working towards this soon though.

BWAlison

 

Hi Alison,

Yes, I am waiting now.My son fits very well in her glutamate thesis....I am looking forward to see the test result and hoping to implement the treatment.Let's share how are we doing as you are going to be a new beginner like me..I started giving GABA but I have to read through the recommended DVD and her book again.

Best wishes

Nevin

> > >

> > > hi all

> > > anyone got any ideas on dosage of phosphatidyl choline as I dont think we

> > are giving enough

> > > we give one cap daily 420mg by thorne

> > > many thanks, Isobel x

> > >

> >

> >

> >

>