Re: Digest Number 1972

[Guest guest]

In a message dated 5/25/03 9:26:18 PM Central Daylight Time,

writes:

> For me, chronic fatigue was from milk and phenol foods

>

> http://www.danasview.net/phenol.htm

>

I've been off dairy completely for seven years now, but I haven't researched

the phenol stuff. I guess I'll go ahead and order the No-Fenol.

>

> > What I'm hoping to hear is that an adult with similar experiences is

> getting

> > relief from the enzymes. I'm very anxious to get off my IBS

> prescriptions

> > (Bentyl and Librax).

>

>

> Definitely consider the enzymes. I can eat quite a few things now

> that I was unable to eat before without major problems. Still need to

> keep away from certain foods tho.

>

> Dana

>

Did you have a rhinitis reaction from the dairy and phenol foods? Sinus and

lung congestion, conjunctivitis, etc.?

I've been on the HN Zyne-Prime and Peptizyde for over a month now without

really noticing any difference.

Right now I'm having a rhinitis reaction -- looks like I have pink-eye --

from a free sample of a new medication that my doctor gave me. I took one dose

and then called the manufacturer because I suspected dairy. It took a while to

track down, but yes, it does have dairy in it. grrrr. Zelnorm, in case

anyone here has to avoid dairy in all forms. ( " It's such a small amount, it

wouldn't cause a reaction. " is what they told me. Uh huh.) I guess I'm hoping

that somehow the enzymes will eliminate that kind of hyper-sensitivity to milk

protein.

I'll go read up on the phenol thing.

Meagan

[Guest guest]

In a message dated 5/25/03 9:26:18 PM Central Daylight Time,

writes:

> within a few months of taking enzymes, realized some lifting of the

> mental fog, restoration of mobility from decreased pain (peptizyde is

> a good anti-inflamatory effect), and the gut has started to heal.

>

> currently, still struggle with yeast issues on and off, and some of

> the symptoms are still there (joint pain is minimal at times for

> example) but can say there is a HUGE difference within a year and

> half of being on enzymes.

>

> gut healing is taking place.

> this path brings a journey of discovering the layers upon layers of

> healing needed.

> it peels off in layers.

> it is a journey in itself, and is working slowly towards positive

> health.

>

> the chronic diarrhea is actually one of the first things that

> subsided-quite quickly after starting enzymes. had that for as long

> as can remember.

>

> minna

>

>

Thank you, Minna. That sounds familiar. I have the constipating form of

IBS, however, and I have gotten MORE constipated with the zyme-prime and the

peptizide (which I'm taking in addition to the prescriptions Bentyl and Librax).

I've been relying on Senekot to get me through. It seems from your experience

that I need to stick with the enzymes for a lot longer than I have, which

makes sense. My body didn't get this screwed up overnight, and it will probably

take a long time to get back to normal.

My goal is to exercise, take the enzymes, wean slowly off the prescriptions,

and someday be human again. lol

Meagan

Christian 6

5

A child of five would understand this. Send someone to fetch a child of

five.

-Groucho Marx

[Guest guest]

In a message dated 5/25/03 9:26:18 PM Central Daylight Time,

writes:

> What kind of reactions did you get from your doctors about enzymes?

> Did they seem like they had heard of this before?

> Thanks once again!

> Mindy

My gastroenterologist pretty much patted me on the head condescendingly and

said " if you want to try that, go ahead. " They aren't dangerous, if you don't

need them they won't hurt you. I'm sure he thinks I'm wasting my money, but I

had dozens of doctors tell me that dairy wasn't making me sick. They were

WRONG.

Meagan

Christian 6

5

A child of five would understand this. Send someone to fetch a child of

five.

-Groucho Marx

[Guest guest]

In a message dated 5/25/03 9:26:18 PM Central Daylight Time,

writes:

> I love the enzymes, also I haven't had a migraine since I started them in

> Feb. That I will attribute solely to the enzymes, because despite the Ojibwa

> Tea and probiotics I was still getting migraines. Good Luck, I hope they

> help.

>

Thank you, . I have to take back what I said before about not noticing

any improvement. I hadn't thought of it until I read your post, but my

frequent headaches have stopped since I started the enzymes.

(Is there a symptom I DON'T have? LOL)

Meagan

Christian 6

5

A child of five would understand this. Send someone to fetch a child of

five.

-Groucho Marx

[Guest guest]

In a message dated 5/25/03 9:26:18 PM Central Daylight Time,

writes:

> I don't know how much the doctor would

> know about this. I don't mean to be arrogant and say doctor's don't

> know anything, but they've told me very little so far that I wonder

> if it's simply that they don't know or don't believe.

Until one of the big pharmaceutical companies starts making enzymes and

funding research and marketing them to doctors, doctors won't know anything

about

them. If I were a cynical person I'd say most doctors act like pushers for the

drug companies. They have enormous financial motives for doing so. <A

HREF= " http://www.google.com/search?hl=en & ie=ISO-8859-1 & q=drug+companies+doctors+\

money " >Google

Search: drug companies doctors money</A> a quick search brought up 259,000

articles on the subject.

Meagan

Christian 6

5

A child of five would understand this. Send someone to fetch a child of

five.

-Groucho Marx

[Guest guest]

In a message dated 5/26/03 11:05:50 AM Eastern Daylight Time,

Meagan0624@... writes:

> I hadn't thought of it until I read your post, but my

> frequent headaches have stopped since I started the enzymes.

>

Yippee!

Nell

[Guest guest]

> Did you have a rhinitis reaction from the dairy and phenol foods?

Sinus and

> lung congestion, conjunctivitis, etc.?

Not until recently. Now it is here full force. I am on rx asthma and

anaphylactic medications for the last few months, which I have never

had to use before, and I am almost 40 years old. I have never had

this severe a reaction to these foods, but now yes.

Detoxing can be nasty....

> Right now I'm having a rhinitis reaction -- looks like I have

pink-eye --

> from a free sample of a new medication that my doctor gave me. I

took one dose

> and then called the manufacturer because I suspected dairy. It took

a while to

> track down, but yes, it does have dairy in it. grrrr. Zelnorm, in

case

> anyone here has to avoid dairy in all forms. ( " It's such a small

amount, it

> wouldn't cause a reaction. " is what they told me. Uh huh.)

LOLOLOLOLOL

I know it is NOT funny, but LOLOLOLOLOL I have had severe reactions

to *small* amounts of things. Can you say " anaphylactic " ????

I guess

I'm hoping

> that somehow the enzymes will eliminate that kind of

hyper-sensitivity to milk

> protein.

>

> I'll go read up on the phenol thing.

Well, I can have milk with Peptizyde or Zyme Prime AND No-Fenol, and

it only causes a small elephant to sit on my chest. If I try

artificials with No-Fenol, the elephant is larger, but at least it is

not an anaphylactic elephant. Nothing works for me for nitrates and

other preservatives, I get a massive 3-day migraine headache that does

not respond to ANY treatments, altho controlled head banging is

somewhat helpful.

Milk and/or artificials without enzymes causes a MAJOR ELEPHANT ON

STEROIDS, in addition to VIOLENT COUGHING that lasts a day for milk

and 2-3 days for artificials, and must be something similar to

pertussis, because when I inhale it does sound like the " whoop " . Even

my asthma medication won't help in those instances.

Go slowly, have your medication readily at hand. Good luck.

Dana

[Guest guest]

So, does anyone know the story behind the BFL recipe board? How do we know if

the foods are authorized and also, why is there only one person posting? Just

curious.

[Guest guest]

Hey , I am the owner of the recipe board. Most of the recipes

are completely authorized based on BFL standards. A good portion of

them, I got off the actual BFL official website, and they are

recipes they have deemed themselves " authorized " . If you want to

know which these are, chech out the achived posts in the group. The

ones authorized by the BFL team are marked " authorized " underneath

the title.

The other recipes I made sure fit with BFL standards. All the

recipes in the FILES section of the group are authorized. If I'm

not positive if all the ingredients and portions are authorized,

then it doesn't go in the files section.

With any recipe, you have to judge for yourself. I am VERY picky in

my authorized foods. I like them to be as clean as possible. I

might not find something authorized, and you would, and vice versa.

You have to look at a recipe and say, that does or doesn't fit my

nutritional needs, and go from there. But I am doubting you will

find too much of a problem with the recipes I have posted.

As for why am I the only one posted, well, that I don't know. I

have encouraged the members several times to post their favorite BFL

recipes, but so far, no one else has. I am hoping to get a good

recipe swap going soon. If you would like to join, and post your

own recipes, that would be completely welcome!

As for authorization in other people's recipes, if you are unsure if

something someone has posted is authorized, check out the files

section to see if I added it. If it's there, then it's a clean

recipe, and if not, well, it wasn't up to BFL standards in my

opinion. **I will probably also make a note to the group if someone

sends in someonething completely unauthorized that maybe they should

save that particular recipe for free day. That way no one starts

making food they think is authorized when it isn't.**

Hope this explanation was helpful. If you have any more questions

about it, please feel free to ask. I am very excited about being

able to share all my authorized recipes, and GREATLY look forward to

others sharing theirs in the recipe group!

Liz

BFL_Recipes-Eatingforlife/

> So, does anyone know the story behind the BFL recipe board? How do

we know if

> the foods are authorized and also, why is there only one person

posting? Just

> curious.

>

>

>

>

>

[Guest guest]

Hello people,

I enjoy reading all your input -- it's helpful.

Has anyone tried something called " Whey Low " ? It's a sweetener made from

whey for those on low carb diets or diabetics and tastes good. It's available

on

their website -- wheylow.com. I'm wondering if it's OK for us candida

people.

Thanks,

[Guest guest]

On May 4, 2010, at 10:21 AM, wrote:

CLL and SLL

Messages In This Digest (10 Messages)

1a.

Dogs Annual Vaccinations

From:

1b.

Re: Dogs Annual Vaccinations

From: Mom

1c.

Re: Dogs Annual Vaccinations

From: jb50192@...

1d.

Re: Dogs Annual Vaccinations

From: pat kennedy

1e.

Re: Dogs Annual Vaccinations

From: Cathi Coridan

2.

Educational opportunity for those in Southern California - Reminder

From: pat kennedy

3.

Re: Educational opportunity for those in Southern California - Remin

From: jb50192@...

4a.

Re: Rituxan

From: dhhull@...

5a.

Transformed CLL/SLL

From: dhhull@...

5b.

Re: Transformed CLL/SLL

From: jb50192@...

View All Topics | Create New Topic

Messages

1a.

Dogs Annual Vaccinations

Posted by: ""

robert@...

robert447188

Mon May 3, 2010 12:57 pm (PDT)

I have found out that the annual vaccinations (DHLP - Distemper, Hepatitis,

Leprospirosis and Parvovirus) required by dogs is a live virus, and the

manufacturer state that immune compromised patients should avoid contact for

up to 4 weeks (because the virus may be shed by the dog).

This must be a common problem for those of us with CLL, and I would

therefore appreciate any feedback on how they have managed this situation.

Maybe our resident doctors could provide some advice on the potential

seriousness of these live vaccinations.

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Messages in this topic (5)

1b.

Re: Dogs Annual Vaccinations

Posted by: "Mom"

mommy21858@...

mommy21858

Mon May 3, 2010 2:00 pm (PDT)

Thank you for asking this question. My dog is also due for her annual shots. I hope someone has the answer for this question.

Mom, In Orlando, FL

September is Ovarian Cancer Month. Ovarian Cancer Whispers So Listen!

________________________________

From: <robertcharitydalek (DOT) co.uk>

Sent: Mon, May 3, 2010 3:56:18 PM

Subject: Dogs Annual Vaccinations

I have found out that the annual vaccinations (DHLP - Distemper,

Hepatitis, Leprospirosis and Parvovirus) required by dogs is a live virus, and

the manufacturer state that immune compromised patients should avoid contact

for up to 4 weeks (because the virus may be shed by the dog).

This must be a common problem for those of us with CLL, and I

would therefore appreciate any feedback on how they have managed this situation.

Maybe our resident doctors could provide some advice on the potential

seriousness of these live vaccinations.

Back to top

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Messages in this topic (5)

1c.

Re: Dogs Annual Vaccinations

Posted by: "jb50192@..."

jb50192@...

jcbjcbjcb2000

Mon May 3, 2010 2:49 pm (PDT)

I thought that Dr. Furman has previously stated the opinion that animal

vaccinations are not a danger to humans. However, if the manufacturer

specifically cautions immune compromised patients to take care, I guess I would do

some more research on the particular vaccine.

In a message dated 5/3/2010 5:00:50 P.M. Eastern Daylight Time,

mommy21858 writes:

Thank you for asking this question. My dog is also due for her annual

shots. I hope someone has the answer for this question.

Mom, In Orlando, FL

September is Ovarian Cancer Month. Ovarian Cancer Whispers So Listen!

____________________________________

From: <robert@charitydalekrobert>

groups (DOT)

Sent: Mon, May 3, 2010 3:56:18 PM

Subject: Dogs Annual Vaccinations

I have found out that the annual vaccinations (DHLP - Distemper,

Hepatitis, Leprospirosis and Parvovirus) required by dogs is a live virus, and the

manufacturer state that immune compromised patients should avoid contact for

up to 4 weeks (because the virus may be shed by the dog).

This must be a common problem for those of us with CLL, and I would

therefore appreciate any feedback on how they have managed this situation.

Maybe our resident doctors could provide some advice on the potential

seriousness of these live vaccinations.

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Messages in this topic (5)

1d.

Re: Dogs Annual Vaccinations

Posted by: "pat kennedy"

pkennedy16@...

Mon May 3, 2010 4:29 pm (PDT)

The last discussion was on cat vaccines. I know a couple of people give a

number for the Cornell Vet. School for questions, but I can't find it. I

hope someone else can come up with it.

Pat

On Mon, May 3, 2010 at 2:48 PM, <jb50192aol> wrote:

>

>

> I thought that Dr. Furman has previously stated the opinion that animal

> vaccinations are not a danger to humans. However, if the manufacturer

> specifically cautions immune compromised patients to take care, I guess I

> would do some more research on the particular vaccine.

>

>

>

> In a message dated 5/3/2010 5:00:50 P.M. Eastern Daylight Time,

> mommy21858 writes:

>

>

>

> Thank you for asking this question. My dog is also due for her annual

> shots. I hope someone has the answer for this question.

>

> Mom, In Orlando, FL

> September is Ovarian Cancer Month. Ovarian Cancer Whispers So Listen!

>

>

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

> *From:* <robertcharitydalek (DOT) co.uk>

> *To:*

> *Sent:* Mon, May 3, 2010 3:56:18 PM

> *Subject:* Dogs Annual Vaccinations

>

>

>

> I have found out that the annual vaccinations (DHLP - Distemper,

> Hepatitis, Leprospirosis and Parvovirus) required by dogs is a live virus,

> and the manufacturer state that immune compromised patients should avoid

> contact for up to 4 weeks (because the virus may be shed by the dog).

>

>

>

> This must be a common problem for those of us with CLL, and I would

> therefore appreciate any feedback on how they have managed this situation.

>

>

>

> Maybe our resident doctors could provide some advice on the potential

> seriousness of these live vaccinations.

>

>

>

>

>

>

>

>

>

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Messages in this topic (5)

1e.

Re: Dogs Annual Vaccinations

Posted by: "Cathi Coridan"

cathi.coridan@...

ccoridan@...

Mon May 3, 2010 7:06 pm (PDT)

Hi all

What would the symptoms/issues be for us CLL types if we were to be in contact with a dog or two who had these shots??? I got a really strange intestinal infection last summer in close proximity to the timeline when the dogs got their shots. And, of course, I did not stay away from them at all – they were all over me all the time….

Thanks for any help with this.

Cathi

Cathi Coridan, MA

860-759-9274 - Cell

888-512-5468 - Fax

www.cathicoridan.net

A goal without a plan is just a wish - Antione Saint-Exupery

From: [mailto: ] On Behalf Of jb50192aol

Sent: Monday, May 03, 2010 5:49 PM

Subject: Re: Dogs Annual Vaccinations

I thought that Dr. Furman has previously stated the opinion that animal vaccinations are not a danger to humans. However, if the manufacturer specifically cautions immune compromised patients to take care, I guess I would do some more research on the particular vaccine.

In a message dated 5/3/2010 5:00:50 P.M. Eastern Daylight Time, mommy21858 writes:

Thank you for asking this question. My dog is also due for her annual shots. I hope someone has the answer for this question.

Mom, In Orlando, FL

September is Ovarian Cancer Month. Ovarian Cancer Whispers So Listen!

_____

From: <robertcharitydalek (DOT) co.uk>

Sent: Mon, May 3, 2010 3:56:18 PM

Subject: Dogs Annual Vaccinations

I have found out that the annual vaccinations (DHLP - Distemper, Hepatitis, Leprospirosis and Parvovirus) required by dogs is a live virus, and the manufacturer state that immune compromised patients should avoid contact for up to 4 weeks (because the virus may be shed by the dog).

This must be a common problem for those of us with CLL, and I would therefore appreciate any feedback on how they have managed this situation.

Maybe our resident doctors could provide some advice on the potential seriousness of these live vaccinations.

Back to top

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|

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Messages in this topic (5)

2.

Educational opportunity for those in Southern California - Reminder

Posted by: "pat kennedy"

pkennedy16@...

Mon May 3, 2010 3:24 pm (PDT)

Wednesday, May 19th Dr. Pinter Brown, director of the UCLA Lymphoma

Program, will be discussing the latest research from the 2009 American

Society of Hematology Conference. She said that she will be including CLL

research.

Time: 6:30 - 8:00pm

Location: 200 UCLA Medical Plaza (on the UCLA campus)

A complimentary light dinner will be served. There is no fee for the

program. Parking $11.00 or $3.00 for those with a DMV placard

RSVP to Tricia Jamer, MA by May 12th, as space is limited.

310-846-4704 or tricia.jammerlls (DOT) org

**

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3.

Re: Educational opportunity for those in Southern California - Remin

Posted by: "jb50192@..."

jb50192@...

jcbjcbjcb2000

Mon May 3, 2010 5:37 pm (PDT)

Folks - if enough CLLers show up for this event, it might become the

nucleus for an eventual LA Working Group -

In a message dated 5/3/2010 6:24:38 P.M. Eastern Daylight Time,

pkennedy16gmail writes:

Wednesday, May 19th Dr. Pinter Brown, director of the UCLA Lymphoma

Program, will be discussing the latest research from the 2009 American

Society of Hematology Conference. She said that she will be including CLL

research.

Time: 6:30 - 8:00pm

Location: 200 UCLA Medical Plaza (on the UCLA campus)

A complimentary light dinner will be served. There is no fee for the

program. Parking $11.00 or $3.00 for those with a DMV placard

RSVP to Tricia Jamer, MA by May 12th, as space is limited.

310-846-4704 or _tricia.jammertricia (DOT) _ (mailto:tricia.jammerlls (DOT) org)

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4a.

Re: Rituxan

Posted by: "dhhull@..."

dhhull@...

Mon May 3, 2010 6:16 pm (PDT)

How often does he recieve this and at what dose. How do they tell he is doing well?

Re: Rituxan

My husband has been on various protocols of Rituxan monotherapy for almost 7 years. It has worked very well for him and keeps him symptom free, although he has a fairly aggressive disease with the 11Q. However, it does not work for everyone, and I would never suggest beginning any drug until absolutely necessary.

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Messages in this topic (19)

5a.

Transformed CLL/SLL

Posted by: "dhhull@..."

dhhull@...

Mon May 3, 2010 6:25 pm (PDT)

Any info on transformed CLL/SLL 1 yr after FCR therapy in a 50 year old in good health. Presently on R-CHOP. Is this enough with a good response or is a transplant needed and what kind of transplant?

DH

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5b.

Re: Transformed CLL/SLL

Posted by: "jb50192@..."

jb50192@...

jcbjcbjcb2000

Tue May 4, 2010 6:06 am (PDT)

Dr. Furman recently posted on this for another patient:

I'm pasting it in.

,

It sounds as if you have had a Richter's transformation. Much information

is available at the CIG site regarding this. A Richter's transformation

occurs when CLL transforms into a diffuse large B cell lymphoma. R-CHOP is

typically the first line treatment. Many people require follow-up therapy

followed by an autologous stem cell transplantation. Allogene