Phosphotidyl Choline Protocol Safety?

[Guest guest]

,

Thanks for posting your experience.

While you were being treated with IV PC/Gluathione, did you do the

weekly liver cleanses that I read was part of their protocol? If

so, did you notice their being helpful?

Also, if you were tested by the Bowen Lab for lyme using Dr.

Whitaker's lyme test, were you also tested at the same time for

other parasitic organisms? If so, and if you were positive, did you

take artemisin?

I believe many of us with longterm illness have heavy liver

infestation that needs to be cleared. I've been a rheumatic patient

on Dr. McPherson Brown's antibiotic protocol for 7 years,

with excellent results; but no matter how well I do, there is always

something popping up. My super-sleuthing has narrowed it down to

phase II liver detoxification not working, for some reason. I have

been in the process of doing several different types of cleanses

recommended before doing the BIG liver cleanses.

In the middle of all this, I've learned about Dr. Kane et al's

protocols with phosphatidylcholine and glutathione, etc.

I've failed the VCS test (see www.chronicneurotoxins.com)on more

than one occasion. I did the CSM and got almost back to normal

after one series of them. The last time I tried the CSM, I had the

beginnings of sciatica -- BUT was probably associated with liver

problems created by being on Zithromax three days a week for several

months, after which I started again on CSM, thinking it might be

helpful. After I started on the CSM, the sciatica became unbearable

and required strong pain meds. My liver is my " achilles heel. " So,

one way or another I MUST find answers to this.

I intend to have the lyme test which was developed by Dr. Jo Anne

Whitaker and also tested by Dr. Lida Mattman for its accuracy.

Glad I found this site -- I need this type of information and help.

Best to you all,

bg

> I believe CSM saved my life. I probably had a large neurotoxic

exposure as a

> kid that weakened my immune system (freshwater algae and

algaecides). I

> could still function until Lyme and CFIDS got me down. My visual

test was

> awful, I had typical neurotoxic symptoms (light sensitivity,

stabbing

> pains), and I had a very high TNF-alpha level when I started. I

took the CSM

> with lots of whipping cream, away from food, and otherwise

followed the

> Speight/Kane protocol. I felt absolutely horrible horrible

horrible for 8

> months, and then in the 9th month felt better than I've felt in 25

years. I

> do not believe that getting worse is a reason to give up on this

protocol.

> It will not make a person without neurotoxins sick, IMHO. I

believe that

> getting worse is reason to PERSIST, esp'ly given history,

symptoms, and test

> results that indicate neurotoxicity. I am a patient of Dr.

Speight, and

> while I have the utmost admiration for Dr. Cheney, I do not

believe he gave

> this protocol a fair chance. I went from 40% functioning to 70%.

Having said

> that, I think the PC alone is very safe unless your body for some

reason

> cannot process it, in which you might want to look at an

alternative like

> NAET or immunics to build your acceptance of it, since PC is

predominant in

> every cell wall in your body. However, if you have neurotoxins,

they are

> destroying at least some of the PC even as you replenish it.

> IMHO

>

>

> To your health!

> a not-for profit yoga of immunity - http://www.immunics.org/

> the Flu Hotline - http://www.fluhotline.org/

> " Housework done badly still blesses your family. "

http://www.flylady.net/

>

> Phosphotidyl Choline Protocol Safety?

>

> It is normal to have an intensification reaction (aka getting

sicker) upon

> administration of taking cholestyramine (CSM).

[Guest guest]

,

I believe there are some great differences in the cholesterol-

lowering drugs. CSM is one of the older ones, and the reason it is

used for chronic neurotoxins is because it contains a resin and the

toxins are bound to it and forced out of the body.

Use of CSM for neurotoxins is intended for a very short period of

time -- as little as 2 weeks sometimes. If this product were used

over a long period of time, it would definitely be possible to cause

vitamin deficiencies, especially the fat-soluble ones.

People who have extreme herxes while using CSM are usually those

with some type of insulin resistance problems -- so says Dr. Ritchie

Shoemaker in his book, " Desperation Medicine. " If these people are

identified before this therapy, they can be pre-treated for 5 days

with Pioglitazone and this has been shown to greatly reduce the

likelihood of the " herx from H_ _ _ " , so says Dr. Shoemaker. My

mind has made a leap from Shoemaker's writings to Dr. Kane's

protocols. The adipose tissue/fat seems to be significantly

involved with both of these methods.

bg

> Hi Folks,

>

>

>

> I'm new to this board but thought I'd just jump right in with a

concern I have in considering doing the phosphotydil choline/Kane

protocol for my case of CFIDS.

> Maybe someone could help with the a question(s) I have?

>

>

>

> I'm a recent Dr Cheney patient and I do recall him stating that

the cholestyramine protocol suggested by Shoemaker failed with his

CFIDS patients when he tried it on them. They actually, for the

most part, got sicker while on it. He even halved the recommended

dosages but with little to note. He still was willing to use it on

patients where he and they thought it might be worth a shot, but

these were the results he stated to me.

>

>

>

> Part of the reasoning he thought for the failure was that 1) CFIDS

patients generally have trouble with aggressive detoxing and 2)

Cholestyramine as well as anticholesterol products such as zocor,

lipitor, etc reduce cholesterol with its associated hormones in body

systems actually already insufficient in them. The high

cholesterol, approx 235 generally noted in CFIDS patients, he thinks

is a compensatory mechanism in response to adrenal insufficiency.

>

>

>

> I can personally attest to ending up in the emergency room five

years ago and one month after starting lipitor. The ER doctors were

skeptical of my suggestion that perhaps the lipitor was the source

my suddenly becoming so strikingly weak, faint and having a strange

binding sense occuring in my face, neck and arm muscles. It wasn't

until I saw a Dr Cheney conference tape where he expressed, not that

he would recommend it, that the lipitor type of cholesterol drugs

were a virtually perfect diagnostic test for CFIDS.

>

>

>

> This gave me the first scientific explanation for my experience

and it seemed to fit hand in glove as to what had happened. He

stated that CQ10 is 50% reduced in the livers of our patient

population and that these anticholesterol drugs are known to reduce

CQ10 synthesis in the liver by 40% in people in general. This leads

me to my concern about the phophotydil choline protocol which

foundation seems to be the pioneering work of Shoemaker and his

protocol.

>

>

>

> Is it possible for the IV Phophotidyl Choline protocol to reduce

cholesterol in CFIDS patients and can it inhibit CQ10 synthesis in

our livers? Also if so, what might be reason for a better outcome

of IV PC vs the Cholestyramine treatment observation I got from

Cheney? I understand we would ideally want our cholesterol to come

down and have our bodies not need its steroid hormones as much, but

safety seems a worthy concern for anything that might alter liver

function-- even for the seeming good and potential benefit to our

cellular brain function.

>

>

>

> Thank you,

>

>

>

>

[Guest guest]

, I think you should try to ignore CSM's association with the Kane

protocol. Kane approach attempts to heal the liver and its inability to detox

while CSM is a pharmaceutical which has displeasurable side effects,

constipates,

sucks vitamins and minerals out of gut, can cause your hair to fall out if

used heavily long term, etc. Having said that, I was able to get so well that I

even went long distance running while on it and a friend of mine was able to

go to work full time b/c of it. I am on a break from it right now and would

like to try alternate means to not get on it again and so Kane protocol is good

news. If there is one thing in common with almost CFSer it is we fail the VCS

test and have neurotoxins that keep us bad off. Removing neurotoxins should

result in some degree of health restoration and reduction in symptoms. I do

not think Shoemaker and Cheney using CSM can be directly compared. Shoemaker

checks for different producers of neurotoxins which Cheney didn't take serious

enough in the past such as the coag neg staph in the nose and lyme (which

Cheney recognizes but has little experience diagnosing and treating). Failure

to

address a neurotoxin source, including mold, while giving CSM can result in

CSM not being effective, so it comes as no surprise to me that Cheney did not

have success with CSM. Another thing we all have in common is that ciguatoxin

found by Dr. Hokama at U. of Hawaii when he tested CFSers. I posted my phone

interview with him and how he described how it could be important to try to

remove this toxin via statin drugs or in my case since he knew I was a patient

of

Shoe's, CSM. As with the case of Cheney's trial of CSM, perhaps failure to

address neurotoxins before getting on Kane protocol could result with lesser

results or even like you're worrying about, bad results.

In a message dated 2/17/04 7:34:50 AM Eastern Standard Time,

writes:

The IV PC w/IV Glutithione protocol seems very interesting. Remodeling or

replacing our toxic lipid envelopes as said seems very promising indeed-- at

least as a notion. However, given the past poor report card on CSM from a well

respected researcher in this field and given that the newer PC protocol seems

founded on the original CSM neurodetox model gives me pause as to what I could

be doing to my CFIDS system and liver especially if I go for this newer detox

method.

[Guest guest]

,

Thanks for your insights. I believe you " nailed " this very well.

Dr. Kane et al do give credit to Dr. Shoemaker for his " pioneering "

work in this field. I, too, am pinning my hope on Dr. Kane et al's

new work. I believe they still recommend we do the VCS test

(available on-line) to check our progress periodically when we are

undergoing treatments such as Dr. Kane et al's.

I'm hoping that many physicians over the country attended the

conference last fall on administering the Detoxx System protocols.

Many of us will be waiting and watching.

So glad I found this group!

bg

> , I think you should try to ignore CSM's association with the

Kane

> protocol. Kane approach attempts to heal the liver and its

inability to detox

> while CSM is a pharmaceutical which has displeasurable side

effects, constipates,

> sucks vitamins and minerals out of gut, can cause your hair to

fall out if

> used heavily long term, etc. Having said that, I was able to get

so well that I

> even went long distance running while on it and a friend of mine

was able to

> go to work full time b/c of it. I am on a break from it right now

and would

> like to try alternate means to not get on it again and so Kane

protocol is good

> news. If there is one thing in common with almost CFSer it is we

fail the VCS

> test and have neurotoxins that keep us bad off. Removing

neurotoxins should

> result in some degree of health restoration and reduction in

symptoms. I do

> not think Shoemaker and Cheney using CSM can be directly

compared. Shoemaker

> checks for different producers of neurotoxins which Cheney didn't

take serious

> enough in the past such as the coag neg staph in the nose and lyme

(which

> Cheney recognizes but has little experience diagnosing and

treating). Failure to

> address a neurotoxin source, including mold, while giving CSM can

result in

> CSM not being effective, so it comes as no surprise to me that

Cheney did not

> have success with CSM. Another thing we all have in common is

that ciguatoxin

> found by Dr. Hokama at U. of Hawaii when he tested CFSers. I

posted my phone

> interview with him and how he described how it could be important

to try to

> remove this toxin via statin drugs or in my case since he knew I

was a patient of

> Shoe's, CSM. As with the case of Cheney's trial of CSM, perhaps

failure to

> address neurotoxins before getting on Kane protocol could result

with lesser

> results or even like you're worrying about, bad results.

>

>

> In a message dated 2/17/04 7:34:50 AM Eastern Standard Time,

> writes:

> The IV PC w/IV Glutithione protocol seems very interesting.

Remodeling or

> replacing our toxic lipid envelopes as said seems very promising

indeed-- at

> least as a notion. However, given the past poor report card on

CSM from a well

> respected researcher in this field and given that the newer PC

protocol seems

> founded on the original CSM neurodetox model gives me pause as to

what I could

> be doing to my CFIDS system and liver especially if I go for this

newer detox

> method.

>

>

>

[Guest guest]

There are more Detoxx conferences scheduled for this year, should

anyone's doctor be interested: London (March), Phoenix (April), and

Atlanta (May).

http://www.bodybio.com/conferences.html

--- " bsgttx " <bsgttx@t...> wrote:

> I'm hoping that many physicians over the country attended the

> conference last fall on administering the Detoxx System

protocols.

> Many of us will be waiting and watching.