Update

[Guest guest]

I am very glad to hear from you.

I will continue to pray for you and your father.

 

I wanted to give you a call , but can't find your # anywhere.

 

Maybe send it to me ewhen you have a minute

On Wed, May 6, 2009 at 10:42 AM, Joyce Hudson <bjoyful@...> wrote:

Hi Everyone! 

 

First I want to Thank All of You for your prayers.  We can sure use them.

 

When Dad had his first Chemo treatment (March 30th), it resulted in Syndrome, which basically causes the following skin conditions:  Blisters, Sloughing of the skin, Dry and Peeling skin, Red to Beet Red skin, and the worse a burning sensation in the skin.  I will tell you all later, what I have done to counteract these conditions.  Anyway, not only does this affect the outside of the body, but it affects the inside too, causing frequent urination from the inflammation of the skin, and even has affected Dad's swallowing.  He can now only eat soft foods.  It has weakened his limbs, so that even getting up is difficult.  Forget about walking far, Dad has to use a wheel chair.  It also causes sensitivities to meds, herbs, supplements, sunlight, ect.  It's been pure torture for Dad.

 

We see a new doctor today.  A dermatologist that understands this condition.  It is getting better, but this has happened twice before.  We would think it's healing and the next day it would be right back out!

 

I am not on the computer much these days.  Taking care of Dad and doing his and my chores, takes about all of my time.  I did put out ten tomato plants and some cabbage, but I just don't have the time to mess with taking care of a full garden. 

 

Physically, I am doing better.  Making sure I get my rest, supplements and eating right.  Mentally and emotionally, I am doing a lot better.  Did have to go back on my Prozac, though.  Hurrah for Prozac!  LOL! 

 

That's about it for now.  Sorry I haven't replied to any emails, I just am not on the computer much these days.

 

Lots of Love and Blessings, Joy

[Guest guest]

Dear Joy!

I am wishing you the best outcome from all that you are enduring and that your dad gets the help he needs, it must be tough having to see him like this when you know this chemo wouldn't be your choice method for getting better.

I think of you daily, and we miss you here at our little group.

But dont worry, everything here is holding well.

With many blessing to you, and love,

Michele

From: Joyce Hudson <bjoyful@...>Subject: [ ] Update Date: Wednesday, May 6, 2009, 9:42 AM

Hi Everyone!

First I want to Thank All of You for your prayers. We can sure use them.

When Dad had his first Chemo treatment (March 30th), it resulted in Syndrome, which basically causes the following skin conditions: Blisters, Sloughing of the skin, Dry and Peeling skin, Red to Beet Red skin, and the worse a burning sensation in the skin. I will tell you all later, what I have done to counteract these conditions. Anyway, not only does this affect the outside of the body, but it affects the inside too, causing frequent urination from the inflammation of the skin, and even has affected Dad's swallowing. He can now only eat soft foods. It has weakened his limbs, so that even getting up is difficult. Forget about walking far, Dad has to use a wheel chair. It also causes sensitivities to meds, herbs, supplements, sunlight, ect. It's been pure torture for Dad.

We see a new doctor today. A dermatologist that understands this condition. It is getting better, but this has happened twice before. We would think it's healing and the next day it would be right back out!

I am not on the computer much these days. Taking care of Dad and doing his and my chores, takes about all of my time. I did put out ten tomato plants and some cabbage, but I just don't have the time to mess with taking care of a full garden.

Physically, I am doing better. Making sure I get my rest, supplements and eating right. Mentally and emotionally, I am doing a lot better. Did have to go back on my Prozac, though. Hurrah for Prozac! LOL!

That's about it for now. Sorry I haven't replied to any emails, I just am not on the computer much these days.

Lots of Love and Blessings, Joy

[Guest guest]

Joyce is a sweetheart

On Thu, May 7, 2009 at 8:17 AM, michele horton <epifany97523@...> wrote:

Dear Joy!

 

I am wishing you the best outcome from all that you are enduring and that your dad gets the help he needs, it must be tough having to see him like this when you know this chemo wouldn't be your choice method for getting better.

 

I think of you daily, and we miss you here at our little group.

 

But dont worry, everything here is holding well.

 

With many blessing to you, and love,

 

Michele

From: Joyce Hudson <bjoyful@...>Subject: [ ] Update

Date: Wednesday, May 6, 2009, 9:42 AM

Hi Everyone! 

 

First I want to Thank All of You for your prayers.  We can sure use them.

 

When Dad had his first Chemo treatment (March 30th), it resulted in Syndrome, which basically causes the following skin conditions:  Blisters, Sloughing of the skin, Dry and Peeling skin, Red to Beet Red skin, and the worse a burning sensation in the skin.  I will tell you all later, what I have done to counteract these conditions.  Anyway, not only does this affect the outside of the body, but it affects the inside too, causing frequent urination from the inflammation of the skin, and even has affected Dad's swallowing.  He can now only eat soft foods.  It has weakened his limbs, so that even getting up is difficult.  Forget about walking far, Dad has to use a wheel chair.  It also causes sensitivities to meds, herbs, supplements, sunlight, ect.  It's been pure torture for Dad.

 

We see a new doctor today.  A dermatologist that understands this condition.  It is getting better, but this has happened twice before.  We would think it's healing and the next day it would be right back out!

 

I am not on the computer much these days.  Taking care of Dad and doing his and my chores, takes about all of my time.  I did put out ten tomato plants and some cabbage, but I just don't have the time to mess with taking care of a full garden. 

 

Physically, I am doing better.  Making sure I get my rest, supplements and eating right.  Mentally and emotionally, I am doing a lot better.  Did have to go back on my Prozac, though.  Hurrah for Prozac!  LOL! 

 

That's about it for now.  Sorry I haven't replied to any emails, I just am not on the computer much these days.

 

Lots of Love and Blessings, Joy

[Guest guest]

Hi - good to hear from you! I'm sorry you are having a tough time of

things with the med combos. I'm there with you. I've been on Enbrel for 7 weeks

now and am not feeling any difference. I'm afraid this will mean another combo

will have to be tried.

Its wonderful to hear (read) you so upbeat in spite of this setback. Enjoy your

granddaughter - being a grandparent is THE BEST!! I have 7 grands and just love

it when we can all get together!!

Praying that you get the right combo soon.....Doreen

>

> Hi All,

> It's been a while since i contributed as I've got my son, daughter

> in law and grandaughter moving in with us this week. By the

> end of the week, there will be 6 adults and living here. Been

> busy finding space and moving rooms etc, well I've been doing the

> organising LOL. So far so good. Anyway, I'll get on with my update.

>

> Diagnosed with RA 1997 and commenced on MXT tablets 25mg per week

> (YUCK), plus Etoricoxib 120mg daily and Dihydracodeine 120mg daily

> and Amitriptyline 25mg nightly and Folic acid. Progressed to

> Sulphasalazine 6 tablets daily and Leflunomide 25mg daily plus

> Etoricoxib 120mg, Dihydracodeine 120mg and Amitriptyline 50mg and

> Omeprazole 20mg in 2000 and Prednisolone IM injections every 6

> weeks,( with much weight gain) as I became much worse and more or

> less bedbound for the next 3 years and unable to walk with lots of

> joint damage in hands, feet, knees and hips. Then in early 2004

> commenced Humira injections plus all the above, but Humira had to

> be withdrawn after 3 months as I became much worse. I had to get a

> total hysterectomy as I had a 10lb Fibroid growing in my womb,

> which was thought caused by my medication. From 2004 til March this

> year, my meds consisted of Sulphasalazine,Leflunomide,Etoricoxib,

> Dihydracodeine, Amitriptyline, Omeprazole and large doses of

> Prednisolone IM injections every 6 weeks. In March this year I

> started 50ml Enbrel injections weekly, and had a marvelous 2 weeks

> which saw me improving and being able to walk outside for the first

> time in years, previously I could only go out in a wheelchair. Now,

> is a different story, the Enbrel has stopped working and given me a

> few chest infections. I had a Rheumy appointment 2 weeks ago, and

> got a lot of blood work done, resulting in me now possibly having

> another auto immune disease and the RA is now affecting my eyes(the

> gel part is disintegrating). I am back at the hospital 5 August,

> when it will be decided where they go now. Apparently, there is a

> drug that's not licensed yet, but there is talk of me trying it.

> I'm still trying to think if that's what I want to do as it's a lot

> to get my head around. Normally, I'm quite a positive person, but

> this has got to me.

>

> I hope, for anyone newly diagnosed, the above doesn't deflate you,

> as we are all different. Some of us (the minority) have problems

> getting the right cocktail of drugs. There are plenty of good drugs

> around, but some of us just take longer to get there. I know I

> will bounce back, but for now my wings are clipped lol.

>

> Anyway, I have a lot to be thankful for, I have a good supportive

> family and the most gorgeous 5 year old grandaughter, who I'll be

> able to see every single day and night for the forseeable future.

> God sent her to me as a gift, far better than any medication.

>

> Love and hugs to you all

> x

[Guest guest]

Hi :

I was so sorry to read that you are not feeling well. I do hope you can

find the right med. for you, and that you can start to feel better.

You just can't beat the love and support from our families. How

wonderful to have you family with you, and your little granddaughter.

She will make such a good life for you. Imagine having her with you

24/7. Such joy for you. I know you will love every minute you spend

with her.

I know you are positive like me, and that does carry us with out daily

struggles with R.A. I wish you good luck if you decide to try that new

med. It might be just the miracle drug that you need to feel better.

Take care of yourself, and have fun with your family.

Hugs,

Barbara

--- In , " sarahledsom " <sarahledsom@...>

wrote:

>

> Hi All,

> It's been a while since i contributed as I've got my son, daughter in

> law and grandaughter moving in with us this week. By the end of

> the week, there will be 6 adults and living here. Been busy

> finding space and moving rooms etc, well I've been doing the

organising

> LOL. So far so good. Anyway, I'll get on with my update.

>

> Diagnosed with RA 1997 and commenced on MXT tablets 25mg per week

> (YUCK), plus Etoricoxib 120mg daily and Dihydracodeine 120mg daily and

> Amitriptyline 25mg nightly and Folic acid. Progressed to

Sulphasalazine

> 6 tablets daily and Leflunomide 25mg daily plus Etoricoxib 120mg,

> Dihydracodeine 120mg and Amitriptyline 50mg and Omeprazole 20mg in

2000

> and Prednisolone IM injections every 6 weeks,( with much weight gain)

as

> I became much worse and more or less bedbound for the next 3 years and

> unable to walk with lots of joint damage in hands, feet, knees and

hips.

> Then in early 2004 commenced Humira injections plus all the above, but

> Humira had to be withdrawn after 3 months as I became much worse. I

had

> to get a total hysterectomy as I had a 10lb Fibroid growing in my

womb,

> which was thought caused by my medication. From 2004 til March this

> year, my meds consisted of Sulphasalazine,Leflunomide,Etoricoxib,

> Dihydracodeine, Amitriptyline, Omeprazole and large doses of

> Prednisolone IM injections every 6 weeks. In March this year I started

> 50ml Enbrel injections weekly, and had a marvelous 2 weeks which saw

me

> improving and being able to walk outside for the first time in years,

> previously I could only go out in a wheelchair. Now, is a different

> story, the Enbrel has stopped working and given me a few chest

> infections. I had a Rheumy appointment 2 weeks ago, and got a lot of

> blood work done, resulting in me now possibly having another auto

immune

> disease and the RA is now affecting my eyes(the gel part is

> disintegrating). I am back at the hospital 5 August, when it will be

> decided where they go now. Apparently, there is a drug that's not

> licensed yet, but there is talk of me trying it. I'm still trying to

> think if that's what I want to do as it's a lot to get my head around.

> Normally, I'm quite a positive person, but this has got to me.

>

> I hope, for anyone newly diagnosed, the above doesn't deflate you, as

we

> are all different. Some of us (the minority) have problems getting the

> right cocktail of drugs. There are plenty of good drugs around, but

some

> of us just take longer to get there. I know I will bounce back, but

for

> now my wings are clipped lol.

>

> Anyway, I have a lot to be thankful for, I have a good supportive

family

> and the most gorgeous 5 year old grandaughter, who I'll be able to see

> every single day and night for the forseeable future. God sent her to

me

> as a gift, far better than any medication.

>

> Love and hugs to you all

> x

>

>

>

>

[Guest guest]

Hi :

I was so sorry to read that you are not feeling well. I do hope you can

find the right med. for you, and that you can start to feel better.

You just can't beat the love and support from our families. How

wonderful to have you family with you, and your little granddaughter.

She will make such a good life for you. Imagine having her with you

24/7. Such joy for you. I know you will love every minute you spend

with her.

I know you are positive like me, and that does carry us with out daily

struggles with R.A. I wish you good luck if you decide to try that new

med. It might be just the miracle drug that you need to feel better.

Take care of yourself, and have fun with your family.

Hugs,

Barbara

--- In , " sarahledsom " <sarahledsom@...>

wrote:

>

> Hi All,

> It's been a while since i contributed as I've got my son, daughter in

> law and grandaughter moving in with us this week. By the end of

> the week, there will be 6 adults and living here. Been busy

> finding space and moving rooms etc, well I've been doing the

organising

> LOL. So far so good. Anyway, I'll get on with my update.

>

> Diagnosed with RA 1997 and commenced on MXT tablets 25mg per week

> (YUCK), plus Etoricoxib 120mg daily and Dihydracodeine 120mg daily and

> Amitriptyline 25mg nightly and Folic acid. Progressed to

Sulphasalazine

> 6 tablets daily and Leflunomide 25mg daily plus Etoricoxib 120mg,

> Dihydracodeine 120mg and Amitriptyline 50mg and Omeprazole 20mg in

2000

> and Prednisolone IM injections every 6 weeks,( with much weight gain)

as

> I became much worse and more or less bedbound for the next 3 years and

> unable to walk with lots of joint damage in hands, feet, knees and

hips.

> Then in early 2004 commenced Humira injections plus all the above, but

> Humira had to be withdrawn after 3 months as I became much worse. I

had

> to get a total hysterectomy as I had a 10lb Fibroid growing in my

womb,

> which was thought caused by my medication. From 2004 til March this

> year, my meds consisted of Sulphasalazine,Leflunomide,Etoricoxib,

> Dihydracodeine, Amitriptyline, Omeprazole and large doses of

> Prednisolone IM injections every 6 weeks. In March this year I started

> 50ml Enbrel injections weekly, and had a marvelous 2 weeks which saw

me

> improving and being able to walk outside for the first time in years,

> previously I could only go out in a wheelchair. Now, is a different

> story, the Enbrel has stopped working and given me a few chest

> infections. I had a Rheumy appointment 2 weeks ago, and got a lot of

> blood work done, resulting in me now possibly having another auto

immune

> disease and the RA is now affecting my eyes(the gel part is

> disintegrating). I am back at the hospital 5 August, when it will be

> decided where they go now. Apparently, there is a drug that's not

> licensed yet, but there is talk of me trying it. I'm still trying to

> think if that's what I want to do as it's a lot to get my head around.

> Normally, I'm quite a positive person, but this has got to me.

>

> I hope, for anyone newly diagnosed, the above doesn't deflate you, as

we

> are all different. Some of us (the minority) have problems getting the

> right cocktail of drugs. There are plenty of good drugs around, but

some

> of us just take longer to get there. I know I will bounce back, but

for

> now my wings are clipped lol.

>

> Anyway, I have a lot to be thankful for, I have a good supportive

family

> and the most gorgeous 5 year old grandaughter, who I'll be able to see

> every single day and night for the forseeable future. God sent her to

me

> as a gift, far better than any medication.

>

> Love and hugs to you all

> x

>

>

>

>

[Guest guest]

Hi ,

I'm glad your family is around you right now, to give you support. You

have been through so much, and I hope you can find the right med to

help.

Just know your in your in my thoughts and prayers. Keep us posted, and

I'm here if you ever need to chat.

HUGS,

Tawny

--- In , " sarahledsom " <sarahledsom@...>

wrote:

>

> Hi All,

> It's been a while since i contributed as I've got my son, daughter in

> law and grandaughter moving in with us this week. By the end of

> the week, there will be 6 adults and living here. Been busy

> finding space and moving rooms etc, well I've been doing the

organising

> LOL. So far so good. Anyway, I'll get on with my update.

>

> Diagnosed with RA 1997 and commenced on MXT tablets 25mg per week

> (YUCK), plus Etoricoxib 120mg daily and Dihydracodeine 120mg daily and

> Amitriptyline 25mg nightly and Folic acid. Progressed to

Sulphasalazine

> 6 tablets daily and Leflunomide 25mg daily plus Etoricoxib 120mg,

> Dihydracodeine 120mg and Amitriptyline 50mg and Omeprazole 20mg in

2000

> and Prednisolone IM injections every 6 weeks,( with much weight gain)

as

> I became much worse and more or less bedbound for the next 3 years and

> unable to walk with lots of joint damage in hands, feet, knees and

hips.

> Then in early 2004 commenced Humira injections plus all the above, but

> Humira had to be withdrawn after 3 months as I became much worse. I

had

> to get a total hysterectomy as I had a 10lb Fibroid growing in my

womb,

> which was thought caused by my medication. From 2004 til March this

> year, my meds consisted of Sulphasalazine,Leflunomide,Etoricoxib,

> Dihydracodeine, Amitriptyline, Omeprazole and large doses of

> Prednisolone IM injections every 6 weeks. In March this year I started

> 50ml Enbrel injections weekly, and had a marvelous 2 weeks which saw

me

> improving and being able to walk outside for the first time in years,

> previously I could only go out in a wheelchair. Now, is a different

> story, the Enbrel has stopped working and given me a few chest

> infections. I had a Rheumy appointment 2 weeks ago, and got a lot of

> blood work done, resulting in me now possibly having another auto

immune

> disease and the RA is now affecting my eyes(the gel part is

> disintegrating). I am back at the hospital 5 August, when it will be

> decided where they go now. Apparently, there is a drug that's not

> licensed yet, but there is talk of me trying it. I'm still trying to

> think if that's what I want to do as it's a lot to get my head around.

> Normally, I'm quite a positive person, but this has got to me.

>

> I hope, for anyone newly diagnosed, the above doesn't deflate you, as

we

> are all different. Some of us (the minority) have problems getting the

> right cocktail of drugs. There are plenty of good drugs around, but

some

> of us just take longer to get there. I know I will bounce back, but

for

> now my wings are clipped lol.

>

> Anyway, I have a lot to be thankful for, I have a good supportive

family

> and the most gorgeous 5 year old grandaughter, who I'll be able to see

> every single day and night for the forseeable future. God sent her to

me

> as a gift, far better than any medication.

>

> Love and hugs to you all

> x

>

>

>

>

[Guest guest]

,

Nice to hear from you.

I hope your eyes (and the rest of you) are going to be OK.

Not an MD

On Thu, Jul 9, 2009 at 5:07 PM, sarahledsom<sarahledsom@...> wrote:

> Hi All,

> It's been a while since i contributed as I've got my son, daughter in

> law and grandaughter moving in with us this week. By the end of

> the week, there will be 6 adults and living here. Been busy

> finding space and moving rooms etc, well I've been doing the organising

> LOL. So far so good. Anyway, I'll get on with my update.

>

> Diagnosed with RA 1997 and commenced on MXT tablets 25mg per week

> (YUCK), plus Etoricoxib 120mg daily and Dihydracodeine 120mg daily and

> Amitriptyline 25mg nightly and Folic acid. Progressed to Sulphasalazine

> 6 tablets daily and Leflunomide 25mg daily plus Etoricoxib 120mg,

> Dihydracodeine 120mg and Amitriptyline 50mg and Omeprazole 20mg in 2000

> and Prednisolone IM injections every 6 weeks,( with much weight gain) as

> I became much worse and more or less bedbound for the next 3 years and

> unable to walk with lots of joint damage in hands, feet, knees and hips.

> Then in early 2004 commenced Humira injections plus all the above, but

> Humira had to be withdrawn after 3 months as I became much worse. I had

> to get a total hysterectomy as I had a 10lb Fibroid growing in my womb,

> which was thought caused by my medication. From 2004 til March this

> year, my meds consisted of Sulphasalazine,Leflunomide,Etoricoxib,

> Dihydracodeine, Amitriptyline, Omeprazole and large doses of

> Prednisolone IM injections every 6 weeks. In March this year I started

> 50ml Enbrel injections weekly, and had a marvelous 2 weeks which saw me

> improving and being able to walk outside for the first time in years,

> previously I could only go out in a wheelchair. Now, is a different

> story, the Enbrel has stopped working and given me a few chest

> infections. I had a Rheumy appointment 2 weeks ago, and got a lot of

> blood work done, resulting in me now possibly having another auto immune

> disease and the RA is now affecting my eyes(the gel part is

> disintegrating). I am back at the hospital 5 August, when it will be

> decided where they go now. Apparently, there is a drug that's not

> licensed yet, but there is talk of me trying it. I'm still trying to

> think if that's what I want to do as it's a lot to get my head around.

> Normally, I'm quite a positive person, but this has got to me.

>

> I hope, for anyone newly diagnosed, the above doesn't deflate you, as we

> are all different. Some of us (the minority) have problems getting the

> right cocktail of drugs. There are plenty of good drugs around, but some

> of us just take longer to get there.  I know I will bounce back, but for

> now my wings are clipped lol.

>

> Anyway, I have a lot to be thankful for, I have a good supportive family

> and the most gorgeous 5 year old grandaughter, who I'll be able to see

> every single day and night for the forseeable future. God sent her to me

> as a gift, far better than any medication.

>

> Love and hugs to you all

> x

[Guest guest]

Hi Margot, and the best of luck to you on this new venture.  How about a

different " wig a week " , that way you could compare.  who has more fun, blonds?

brunettes? Bald is a sign of courage and a badge of honor.  I don't like

wearing wigs, but then, in the past I only wore one for fun, not out of

necessity.  Always thought I would just wear more makeup, and buy beautiful

earrings.  Good luck to you, Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Margot M. <redbudln@...>

Subject: [ ] Update

Date: Wednesday, July 21, 2010, 5:32 PM

 

Hi: Just thought I'd update all of you on my latest info. You may

remember

that in December 2008 I had a large malignant tumor removed from my liver.

I have done just fine until recently when a CT scan showed three new small

lesions on the liver. My onc and my surgeon got together and decided that

it would not be good to remove them surgically, as I had already had major

surgery in 2008.

So tomorrow I will start chemotherapy. It is a combination of Gemzar and

Cisplatin, given every other week for two months. No one knows whether

there will be an interaction between Gleevec and this chemo, so they will

have me keep on taking Gleevec and watch what happens. I will have weekly

blood tests and another CT scan in two months. It certainly sounds to me

like the side effects will mimic Interferon A, the difference being that I

will lose my hair. My onc thought most likely I had always wanted to be a

brunette, so here is my chance to try a new wig. I am thrilled!!!

Also no one knows whether this chemo will be effective with me but it would

be nice if it were!

Margot

[Guest guest]

It certainly sounds to me

> like the side effects will mimic Interferon A, the difference being that I

> will lose my hair. My onc thought most likely I had always wanted to be a

> brunette, so here is my chance to try a new wig. I am thrilled!!!

> Also no one knows whether this chemo will be effective with me but it would

> be nice if it were!

> Margot

___________________________

Dear Margot,

I hope this will be the right treatment for you and take care of those new

lesions. It is not fair to have 2 cancers to deal with, but I know others have

been in this position also and have done well.

I don't think I could deal with a wig....but I nice cancer cap would do for me.

When my hair was the thinnest, on triple therapy and I think both inf and HHT

contributed, I bought a 'cancer hat'.....looked like a cloth baseball hat, was

reversible so I had 2 choices to wear. Also see lots of women at the cancer

center in some very attractive scarfs. I think the baldness is a badge of

courage. Let us know how you are doing once treatment is under way.

C.

[Guest guest]

Hi Margot,

I'm so sorry to hear that you're facing this uncertainty but your positive

attitude will no doubt be an asset to you and those around you who are sharing

the emotional roller coaster with you.

All my best to you and Fred and please keep us informed as to how you are in in

the days and weeks to come.

Tracey

>

> Hi: Just thought I'd update all of you on my latest info. You may remember

> that in December 2008 I had a large malignant tumor removed from my liver.

> I have done just fine until recently when a CT scan showed three new small

> lesions on the liver. My onc and my surgeon got together and decided that

> it would not be good to remove them surgically, as I had already had major

> surgery in 2008.

> So tomorrow I will start chemotherapy. It is a combination of Gemzar and

> Cisplatin, given every other week for two months. No one knows whether

> there will be an interaction between Gleevec and this chemo, so they will

> have me keep on taking Gleevec and watch what happens. I will have weekly

> blood tests and another CT scan in two months. It certainly sounds to me

> like the side effects will mimic Interferon A, the difference being that I

> will lose my hair. My onc thought most likely I had always wanted to be a

> brunette, so here is my chance to try a new wig. I am thrilled!!!

> Also no one knows whether this chemo will be effective with me but it would

> be nice if it were!

> Margot

>

>

[Guest guest]

Margot

 

Please go into a finacial browser and look up this ticker symbol " DCTH " .  This

company is making big break throughs with regard to isolating chemo treatment

for cancer in the liver.

Not sure they are ready for full deployment but I do know they have been doing

successful trials.

 

Good luck!  (I do not own any of this stock)

From: traceyincanada <traceyincanada@...>

Subject: [ ] Re: Update

Date: Thursday, July 22, 2010, 12:46 PM

 

Hi Margot,

I'm so sorry to hear that you're facing this uncertainty but your positive

attitude will no doubt be an asset to you and those around you who are sharing

the emotional roller coaster with you.

All my best to you and Fred and please keep us informed as to how you are in in

the days and weeks to come.

Tracey

>

> Hi: Just thought I'd update all of you on my latest info. You may remember

> that in December 2008 I had a large malignant tumor removed from my liver.

> I have done just fine until recently when a CT scan showed three new small

> lesions on the liver. My onc and my surgeon got together and decided that

> it would not be good to remove them surgically, as I had already had major

> surgery in 2008.

> So tomorrow I will start chemotherapy. It is a combination of Gemzar and

> Cisplatin, given every other week for two months. No one knows whether

> there will be an interaction between Gleevec and this chemo, so they will

> have me keep on taking Gleevec and watch what happens. I will have weekly

> blood tests and another CT scan in two months. It certainly sounds to me

> like the side effects will mimic Interferon A, the difference being that I

> will lose my hair. My onc thought most likely I had always wanted to be a

> brunette, so here is my chance to try a new wig. I am thrilled!!!

> Also no one knows whether this chemo will be effective with me but it would

> be nice if it were!

> Margot

>

>

[Guest guest]

Hi Margot,

I will be praying for you too.  There is so much power in this group, you will

do great.  I have a friend with a brunett wig, she looks really cute in it!!

You will too.

God Bless you,

Jackie S.

From: hey00nanc <ncogan@...>

Subject: [ ] Re: Update

Date: Thursday, July 22, 2010, 3:09 AM

 

It certainly sounds to me

> like the side effects will mimic Interferon A, the difference being that I

> will lose my hair. My onc thought most likely I had always wanted to be a

> brunette, so here is my chance to try a new wig. I am thrilled!!!

> Also no one knows whether this chemo will be effective with me but it would

> be nice if it were!

> Margot

___________________________

Dear Margot,

I hope this will be the right treatment for you and take care of those new

lesions. It is not fair to have 2 cancers to deal with, but I know others have

been in this position also and have done well.

I don't think I could deal with a wig....but I nice cancer cap would do for me.

When my hair was the thinnest, on triple therapy and I think both inf and HHT

contributed, I bought a 'cancer hat'.....looked like a cloth baseball hat, was

reversible so I had 2 choices to wear. Also see lots of women at the cancer

center in some very attractive scarfs. I think the baldness is a badge of

courage. Let us know how you are doing once treatment is under way.

C.

[Guest guest]

Hi Margot: Sorry to hear you have to go through this liver problem, but I will

keep you in my prayers. We do not know why we go through all these things,

but just trust God to get you through another bump in the road on your journey.

God Bless You

>

> Hi: Just thought I'd update all of you on my latest info. You may remember

> that in December 2008 I had a large malignant tumor removed from my liver.

> I have done just fine until recently when a CT scan showed three new small

> lesions on the liver. My onc and my surgeon got together and decided that

> it would not be good to remove them surgically, as I had already had major

> surgery in 2008.

> So tomorrow I will start chemotherapy. It is a combination of Gemzar and

> Cisplatin, given every other week for two months. No one knows whether

> there will be an interaction between Gleevec and this chemo, so they will

> have me keep on taking Gleevec and watch what happens. I will have weekly

> blood tests and another CT scan in two months. It certainly sounds to me

> like the side effects will mimic Interferon A, the difference being that I

> will lose my hair. My onc thought most likely I had always wanted to be a

> brunette, so here is my chance to try a new wig. I am thrilled!!!

> Also no one knows whether this chemo will be effective with me but it would

> be nice if it were!

> Margot

>

>

[Guest guest]

I liked it JOY :)Perfectly worded!Thanks MicheleFrom: Joyce Hudson <bjoyful@...>Subject: [health] Update"Natural Health and Living" <health >Date: Thursday, August 5, 2010, 9:12 PM

I have updated our homepage. You might want to read the new introduction. Let me know what you think. I also, changed the picture.

[Guest guest]

Hi Joyce, for me it is all right what you wrote It's done with the heart

From: Joyce Hudson <bjoyful@...>Natural Health and Living <health >Sent: Fri, August 6, 2010 6:12:22 AMSubject: [health] Update

I have updated our homepage. You might want to read the new introduction. Let me know what you think. I also, changed the picture.

[Guest guest]

Dear Bleu

Are the Poms up to speed in testing for beta casein A1 intolerance?

Regards

R

[infections] Update

HI Guys

I had some very interesting tests recently which showed I was genetically susceptible / predisposed to gluten intolerance and celiac disease:

HLA-DQB1 Molecular analysis, Allele 1 0302 ~ celiac disease

HLA-DQB1 Molecular analysis, Allele 2 0501 ~ gluten intolerance

Which I have no doubt about now having.

This test was performed from the comfort of my home by! way of some samples on swabs of cotton buds, by a company called Enterolab.

https://www.enterolab.com/StaticPages/TestInfo.aspx#gene_gluten

This test was $150 and worth every cent. The traditional test to confirm celiac disease demands one does a gluten challenge first (east gluten for 6 weeks) followed by an endoscopy where they take 6 tissue samples. Being totally non invasive the genetic marker test is evidently more elegant and arguably more accurate with the high instance of false negatives using traditional tests.

Most interestingly Enterolab suggest that many people who suffer with (so-called) auto immune disorders, suffer also with gluten intolerance and further state that gluten will exacerbate symptoms of most AI conditions.

I also had another very interesting t! est carried out by a company in the UK called yorktest.com who checked me for over 100 different food intolerance's and found I reacted negatively to 22 food types, only 4 of which I was previously aware of, 14 of which I was consuming regularly.

The third was blood tests for iron levels and anemia. These showed :

blood iron was 33ug/100ml :! normal range 50 to 180

Also that coefficient de saturation en Fer de la transferrine 10,8% : normal range 20 to 40%

What I find odd is that I had NOT been checked before for these two markers even th! ough last year I had a test for anemia and that did not reveal a problem even though I suspected I was anemic. Then they must have done other tests which did not reveal any problems because this is the first time the iron in my blood has been checked.

My question is does this indicate I am anemic or just low on iron in the blood, my Dr seemed to dismiss it as not too serious as the total levels of iron proteines was 163,00 : normal range 30,00 to 450,00

I am a little confused since the Dr explained that last year that these particular tests we not carried out because the total Iron in the system seemed ok (was this an oversight?) and he indicated that this low iron in the blood is not too serious? is this correct or am I technically anemic?

I am now taking iron tablets.

Thanks for any feedback.

bleu

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.851 / Virus Database: 271.1.1/3072 - Release Date: 08/15/10 04:34:00

[Guest guest]

HI The yorktest tests for dairy intolerance, they do not specify whether this is lactose or casein or other.The enterolab test is more expensive and you have to send frozen stool to arrive within 48 hours (expensive shit) https://www.enterolab.com/StaticPages/TestInfo.aspx#stool_milk_sensitivityI would highly recommend the Yorktest if you are prepared to just avoid all dairy produce after a positive result. It is a highly elegant and informative test. If you're ordering it from down under, make sure what time frame it has to arrive within.bleuOn 15 Aug 2010, at 14:22, Windsor wrote: Dear Bleu Are the Poms up to speed in testing for beta casein A1 intolerance? Regards R [infections] Update HI Guys I had some very interesting tests recently which showed I was genetically susceptible / predisposed to gluten intolerance and celiac disease: HLA-DQB1 Molecular analysis, Allele 1 0302 ~ celiac disease HLA-DQB1 Molecular analysis, Allele 2 0501 ~ gluten intolerance Which I have no doubt about now having. This test was performed from the comfort of my home by! way of some samples on swabs of cotton buds, by a company called Enterolab. https://www.enterolab.com/StaticPages/TestInfo.aspx#gene_gluten This test was $150 and worth every cent. The traditional test to confirm celiac disease demands one does a gluten challenge first (east gluten for 6 weeks) followed by an endoscopy where they take 6 tissue samples. Being totally non invasive the genetic marker test is evidently more elegant and arguably more accurate with the high instance of false negatives using traditional tests. Most interestingly Enterolab suggest that many people who suffer with (so-called) auto immune disorders, suffer also with gluten intolerance and further state that gluten will exacerbate symptoms of most AI conditions. I also had another very interesting t! est carried out by a company in the UK called yorktest.com who checked me for over 100 different food intolerance's and found I reacted negatively to 22 food types, only 4 of which I was previously aware of, 14 of which I was consuming regularly. The third was blood tests for iron levels and anemia. These showed : blood iron was 33ug/100ml :! normal range 50 to 180 Also that coefficient de saturation en Fer de la transferrine 10,8% : normal range 20 to 40% What I find odd is that I had NOT been checked before for these two markers even th! ough last year I had a test for anemia and that did not reveal a problem even though I suspected I was anemic. Then they must have done other tests which did not reveal any problems because this is the first time the iron in my blood has been checked. My question is does this indicate I am anemic or just low on iron in the blood, my Dr seemed to dismiss it as not too serious as the total levels of iron proteines was 163,00 : normal range 30,00 to 450,00 I am a little confused since the Dr explained that last year that these particular tests we not carried out because the total Iron in the system seemed ok (was this an oversight?) and he indicated that this low iron in the blood is not too serious? is this correct or am I technically anemic? I am now taking iron tablets. Thanks for any feedback. bleu No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.851 / Virus Database: 271.1.1/3072 - Release Date: 08/15/10 04:34:00

[Guest guest]

Dear Bleu

I already know I'm exquisitely sensitive to beta casein A1.Learned that the hard way. Why I was interested is that I suspect that people who don't respond positively to the use of colostrums and un/nondenatured whey derivatives may well be intolerant of Beta casein A1.

A2 is found in milk from Jerseys, Guernseys etc, A1 from Holstein/Friesians.

Regards

R

PS Buffalo is A2 so proper Mozzarella is OK, and fermented cheeses such as Camembert and Brie have no A1 left in them

[infections] Update

HI Guys

I h! ad some very interesting tests recently which showed I was genetically susceptible / predisposed to gluten intolerance and celiac disease:

HLA-DQB1 Molecular analysis, Allele 1 0302 ~ celiac disease

HLA-DQB1 Molecular analysis, Allele 2 0501 ~ gluten intolerance

Which I have no doubt about now having.

This test was performed from the comfort of my home by! way of some samples on swabs of cotton buds, by a company called Enterolab.

https://www.enterolab.com/StaticPages/T! estInfo.aspx#gene_gluten

This test was $150 and worth every cent. The traditional test to confirm celiac disease demands one does a gluten challenge first (east gluten for 6 weeks) followed by an endoscopy where they take 6 tissue samples. Being totally non invasive the genetic marker test is evidently more elegant and arguably more accurate with the high instance of false negatives using traditional tests.

Most interestingly Enterolab suggest that many people who suffer with (so-called) auto immune disorders, suffer also with gluten intolerance and further state that gluten will exacerbate symptoms of most AI conditions.

I also had another very interesting t! est carried out by a company in the UK called yorktest.com who checked me for over 100 different food intolerance's and found I reacted negatively to 22 food types, only 4 of which ! I was previously aware of, 14 of which I was consuming regularly.

The third was blood tests for iron levels and anemia. These showed :

blood iron was 33ug/100ml :! normal range 50 to 180

Also that coefficient de saturation en Fer de la transferrine 10,8% : normal range 20 to 40%

What I find odd is that I had NOT been checked before for these two markers even th! ough last year I had a test for anemi! a and that did not reveal a problem even though I suspected I was anemic. Then they must have done other tests which did not reveal any problems because this is the first time the iron in my blood has been checked.

My question is does this indicate I am anemic or just low on iron in the blood, my Dr seemed to dismiss it as not too serious as the total levels of iron proteines was 163,00 : normal range 30,00 to 450,00

I am a little confused since the Dr explained that last year that these particular tests we not carried out because the total Iron in the system seemed ok (was this an oversight?) and he indicated that this low! iron in the blood is not too serious? is this correct or am I technically anemic?

I am now taking iron tablets.

Thanks for any feedback.

bleu

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.851 / Virus Database: 271.1.1/3072 - Release Date: 08/15/10 04:34:00

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.851 / Virus Database: 271.1.1/3072 - Release Date: 08/15/10 04:34:00

[Guest guest]

All I remember about iron is that many pwc test low, but taking iron supplements is not all that effective and/or can cause problems with toxicity in the liver. People with low iron almost always have iron absorption problems (which might be caused by gut issues/celiac?) or they may actually have some other deficiency, like b-12 anemia, which mistakenly gets dx'd as an iron deficiency (don't remember that mechanism, just remember it often being cited)

[Guest guest]

forgot to include manganese in the copper antagonist category. My memory is fuzzy on this stuff, so I highly recommend you look stuff up.

penny

From: Penny Houle <pennyhoule@...>Subject: Re: [infections] Updateinfections Date: Sunday, August 15, 2010, 9:08 AM

All I remember about iron is that many pwc test low, but taking iron supplements is not all that effective and/or can cause problems with toxicity in the liver. People with low iron almost always have iron absorption problems (which might be caused by gut issues/celiac?) or they may actually have some other deficiency, like b-12 anemia, which mistakenly gets dx'd as an iron deficiency (don't remember that mechanism, just remember it often being cited)

[Guest guest]

Thats a pretty good summery of things penny (your memory is much better than mine )I checked my b12 and folic acid and both were said to be within range. I do not take any antagonists, but am clearly in the ballpark of celiac disease now. So no doubt this is the primary and logical cause of the deficiency. My Dr did mention possible problems with having too much Iron but I have such a long way to go before I reach toxic levels he is happy for me to be on supplements for 3 months as a start to see what results are and to see if this brings up my levels, stating that sometimes supplements fail to result in a boost. So far after a few days I do seem to feel better while on the supplements...On 15 Aug 2010, at 18:08, Penny Houle wrote: All I remember about iron is that many pwc test low, but taking iron supplements is not all that effective and/or can cause problems with toxicity in the liver. People with low iron almost always have iron absorption problems (which might be caused by gut issues/celiac?) or they may actually have some other deficiency, like b-12 anemia, which mistakenly gets dx'd as an iron deficiency (don't remember that mechanism, just remember it often being cited). Also, it's very important to consider iron's antagonists. If you eat or supplement with nutrients that are antagonists of iron, like copper, zinc, magnesium or certain b vitamins (balancing b's can be tricky) they can cause an iron deficiency as well. One nutrient that really helps absorb iron from your diet is vitamin C. That's all I can remember for now. Went down the low iron/b-vitamin deficiency road years ago. :-) Dear Bleu Are the Poms up to speed in testing for beta casein A1 intolerance? Regards R [infections] Update HI Guys I had some very interesting tests recently which showed I was genetically susceptible / predisposed to gluten intolerance and celiac disease: HLA-DQB1 Molecular analysis, Allele 1 0302 ~ celiac disease HLA-DQB1 Molecular analysis, Allele 2 0501 ~ gluten intolerance Which I have no doubt about now having. This test was performed from the comfort of my home by! way of some samples on swabs of cotton buds, by a company called Enterolab. https://www.enterolab.com/StaticPages/TestInfo.aspx#gene_gluten This test was $150 and worth every cent. The traditional test to confirm celiac disease demands one does a gluten challenge first (east gluten for 6 weeks) followed by an endoscopy where they take 6 tissue samples. Being totally non invasive the genetic marker test is evidently more elegant and arguably more accurate with the high instance of false negatives using traditional tests. Most interestingly Enterolab suggest that many people who suffer with (so-called) auto immune disorders, suffer also with gluten intolerance and further state that gluten will exacerbate symptoms of most AI conditions. I also had another very interesting t! est carried out by a company in the UK called yorktest.com who checked me for over 100 different food intolerance's and found I reacted negatively to 22 food types, only 4 of which I was previously aware of, 14 of which I was consuming regularly. The third was blood tests for iron levels and anemia. These showed : blood iron was 33ug/100ml :! normal range 50 to 180 Also that coefficient de saturation en Fer de la transferrine 10,8% : normal range 20 to 40% What I find odd is that I had NOT been checked before for these two markers even th! ough last year I had a test for anemia and that did not reveal a problem even though I suspected I was anemic. Then they must have done other tests which did not reveal any problems because this is the first time the iron in my blood has been checked. My question is does this indicate I am anemic or just low on iron in the blood, my Dr seemed to dismiss it as not too serious as the total levels of iron proteines was 163,00 : normal range 30,00 to 450,00 I am a little confused since the Dr explained that last year that these particular tests we not carried out because the total Iron in the system seemed ok (was this an oversight?) and he indicated that this low iron in the blood is not too serious? is this correct or am I technically anemic? I am now taking iron tablets. Thanks for any feedback. bleu No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.851 / Virus Database: 271.1.1/3072 - Release Date: 08/15/10 04:34:00

[Guest guest]

Be careful with iron. It's a critical nutrient for bacteria and fungi --

so much so that the body tries to sequester it to keep it away from them.

There is something called " the anemia of chronic disease " in which the

body tries this so hard that it results in anemia. Of course your body

needs iron too, so it's a delicate balancing game. If you're feeling

anemic, that's a good reason to take it, but taking it just to shift your

lab numbers would be something else.

On Sun, Aug 15, 2010 at 06:33:49PM +0200, Agentbleu wrote:

>Thats a pretty good summery of things penny (your memory is much

>better than mine )

>I checked my b12 and folic acid and both were said to be within

>range. I do not take any antagonists, but am clearly in the ballpark

>of celiac disease now. So no doubt this is the primary and logical

>cause of the deficiency. My Dr did mention possible problems with

>having too much Iron but I have such a long way to go before I reach

>toxic levels he is happy for me to be on supplements for 3 months as

>a start to see what results are and to see if this brings up my

>levels, stating that sometimes supplements fail to result in a boost.

>

>So far after a few days I do seem to feel better while on the

>supplements...

>

>

>

>On 15 Aug 2010, at 18:08, Penny Houle wrote:

>

>> All I remember about iron is that many pwc test low, but taking

>> iron supplements is not all that effective and/or can cause

>> problems with toxicity in the liver. People with low iron almost

>> always have iron absorption problems (which might be caused by gut

>> issues/celiac?) or they may actually have some other deficiency,

>> like b-12 anemia, which mistakenly gets dx'd as an iron deficiency

>> (don't remember that mechanism, just remember it often being cited).

>>

>> Also, it's very important to consider iron's antagonists. If you

>> eat or supplement with nutrients that are antagonists of iron, like

>> copper, zinc, magnesium or certain b vitamins (balancing b's can be

>> tricky) they can cause an iron deficiency as well.

>>

>> One nutrient that really helps absorb iron from your diet is

>> vitamin C.

>>

>> That's all I can remember for now. Went down the low iron/b-vitamin

>> deficiency road years ago.

>> :-)

>>

>>

>>

>>

>>

>>

>>>

>>>

>>> Dear Bleu

>>> Are the Poms up to speed in testing for beta casein A1 intolerance?

>>> Regards

>>> R

>>> [infections] Update

>>>

>>> HI Guys

>>>

>>> I had some very interesting tests recently which showed I was

>>> genetically susceptible / predisposed to gluten intolerance and

>>> celiac disease:

>>>

>>> HLA-DQB1 Molecular analysis, Allele 1 0302 ~ celiac disease

>>>

>>> HLA-DQB1 Molecular analysis, Allele 2 0501 ~ gluten intolerance

>>>

>>> Which I have no doubt about now having.

>>>

>>> This test was performed from the comfort of my home by! way of

>>> some samples on swabs of cotton buds, by a company called Enterolab.

>>>

>>> https://www.enterolab.com/StaticPages/TestInfo.aspx#gene_gluten

>>>

>>> This test was $150 and worth every cent. The traditional test to

>>> confirm celiac disease demands one does a gluten challenge first

>>> (east gluten for 6 weeks) followed by an endoscopy where they take

>>> 6 tissue samples. Being totally non invasive the genetic marker

>>> test is evidently more elegant and arguably more accurate with the

>>> high instance of false negatives using traditional tests.

>>>

>>> Most interestingly Enterolab suggest that many people who suffer

>>> with (so-called) auto immune disorders, suffer also with gluten

>>> intolerance and further state that gluten will exacerbate symptoms

>>> of most AI conditions.

>>>

>>>

>>> I also had another very interesting t! est carried out by a

>>> company in the UK called yorktest.com who checked me for over 100

>>> different food intolerance's and found I reacted negatively to 22

>>> food types, only 4 of which I was previously aware of, 14 of which

>>> I was consuming regularly.

>>>

>>>

>>> The third was blood tests for iron levels and anemia. These showed :

>>>

>>> blood iron was 33ug/100ml :! normal range 50 to 180

>>>

>>> Also that coefficient de saturation en Fer de la transferrine

>>> 10,8% : normal range 20 to 40%

>>>

>>> What I find odd is that I had NOT been checked before for these

>>> two markers even th! ough last year I had a test for anemia and

>>> that did not reveal a problem even though I suspected I was

>>> anemic. Then they must have done other tests which did not reveal

>>> any problems because this is the first time the iron in my blood

>>> has been checked.

>>>

>>> My question is does this indicate I am anemic or just low on iron

>>> in the blood, my Dr seemed to dismiss it as not too serious as the

>>> total levels of iron proteines was 163,00 : normal range 30,00 to

>>> 450,00

>>>

>>> I am a little confused since the Dr explained that last year that

>>> these particular tests we not carried out because the total Iron

>>> in the system seemed ok (was this an oversight?) and he indicated

>>> that this low iron in the blood is not too serious? is this

>>> correct or am I technically anemic?

>>>

>>> I am now taking iron tablets.

>>>

>>> Thanks for any feedback.

>>>

>>> bleu

>>>

>>>

>>>

>>> No virus found in this incoming message.

>>> Checked by AVG - www.avg.com

>>> Version: 9.0.851 / Virus Database: 271.1.1/3072 - Release Date:

>>> 08/15/10 04:34:00

>>>

>>

>>

>

[Guest guest]

Great point, Norman. I knew I was forgetting something. :-) That's a pretty key piece of the puzzle for those of us with chronic infections. These days, I don't necessarily remember how I got to some kind of understanding, I just remember that I got there. Such as not supplementing with iron, even if I test deficient, because that test is not necessarily an accurate representation of the real problem.

I definitely should to go back and refresh my memory or understanding of a lot of things, because my memory is most definitely not as good as it used to be and whatever I've learned in the past is not necessarily infallible.

However, I definitely remember that iron supplementation can be problematic for a number of reasons and I made the decision that it was not a good idea for me (I did take it for a while without any benefit or increase in my iron levels).

Conversely, I saw immediate results from supplementing magnesium and B vitamins. But the B's can also be very tricky in getting the right balance, especially for pwcs who often have a lot of deficiencies to begin with, so just supplementing with a B-complex is not always the best thing either.

What I learned from several years of intense nutrient supplementation is that each nutrient needs research and very careful trial and error. And that a lot of the supplements I tried were nothing but a big waste of money, no matter how good they may have sounded. That might be caused by my inability to absorb those nutrients, or it might be that many of these supplements aren't all that absorbable in general, or the general lack of overall quality or integrity in a lot of supplements. I would definitely recommend that anyone who wants to take supplements, get pharmaceutical grade. They may cost a bit more, but at least you know you're getting the real thing and can gauge your results with the real thing against future less expensive versions.

Most of all, I think Barb has it right. We probably all would benefit from some kind of digestive enzymes to get the most out of supplements and meds in general, and to help our immune systems function better.

>>>>>>>>>>> Dear Bleu>>> Are the Poms up to speed in testing for beta casein A1 intolerance?>>> Regards>>> R>>> [infections] Update>>>>>> HI Guys>>>>>> I had some very interesting tests recently which showed I was >>> genetically susceptible / predisposed to gluten intolerance and >>> celiac disease:>>>>>> HLA-DQB1 Molecular analysis, Allele 1 0302 ~ celiac disease>>>>>> HLA-DQB1 Molecular analysis, Allele 2 0501 ~ gluten intolerance>>>>>> Which I have no doubt about now having.>>>>>> This test was performed from the comfort of my home by! way of >>> some samples on swabs of cotton buds, by a company called Enterolab.>>>>>> https://www.enterolab.com/StaticPages/TestInfo.aspx#gene_gluten>>>>>> This test was $150 and worth every cent. The traditional test to >>> confirm celiac disease demands one does a gluten challenge first >>> (east gluten for 6 weeks) followed by an endoscopy where they take >>> 6 tissue samples. Being totally non invasive the genetic marker >>> test is evidently more elegant and arguably more accurate with the >>> high instance of false negatives using traditional tests.>>>>>> Most interestingly Enterolab suggest that many people who suffer >>> with (so-called) auto immune disorders, suffer also with gluten >>> intolerance and further state that gluten will exacerbate symptoms >>> of most AI

conditions.>>>>>>>>> I also had another very interesting t! est carried out by a >>> company in the UK called yorktest.com who checked me for over 100 >>> different food intolerance's and found I reacted negatively to 22 >>> food types, only 4 of which I was previously aware of, 14 of which >>> I was consuming regularly.>>>>>>>>> The third was blood tests for iron levels and anemia. These showed :>>>>>> blood iron was 33ug/100ml :! normal range 50 to 180>>>>>> Also that coefficient de saturation en Fer de la transferrine >>> 10,8% : normal range 20 to 40%>>>>>> What I find odd is that I had NOT been checked before for these >>> two markers even th! ough last year I had a test for anemia and >>> that did not

reveal a problem even though I suspected I was >>> anemic. Then they must have done other tests which did not reveal >>> any problems because this is the first time the iron in my blood >>> has been checked.>>>>>> My question is does this indicate I am anemic or just low on iron >>> in the blood, my Dr seemed to dismiss it as not too serious as the >>> total levels of iron proteines was 163,00 : normal range 30,00 to >>> 450,00>>>>>> I am a little confused since the Dr explained that last year that >>> these particular tests we not carried out because the total Iron >>> in the system seemed ok (was this an oversight?) and he indicated >>> that this low iron in the blood is not too serious? is this >>> correct or am I technically anemic?>>>>>> I am

now taking iron tablets.>>>>>> Thanks for any feedback.>>>>>> bleu>>>>>>>>>>>> No virus found in this incoming message.>>> Checked by AVG - www.avg.com>>> Version: 9.0.851 / Virus Database: 271.1.1/3072 - Release Date: >>> 08/15/10 04:34:00>>>>>>> >

[Guest guest]

OMG the money I've wasted on supplements, I don't mind the ones that just don't work so much as the ones that nearly kill you.I took a whey protein substrate about a year ago to try and gain some weight which resulted in an anaphylactic shock which nearly killed me. More recently I switched to a new brand of b vitamin complex, which with half a tablet again nearly killed me. Since that episode I haven't taken any supplements. I was also reluctant to trial any Iron without confirming tests to show I was low, because I know this is a tricky one which could be masked by folic acid and b12 deficiency and just adding it as a trial would render any solid evidence that I was deficient unlikely. I have ordered some very high grade supplements from Biocare which do not contain any allergens for the future. I will be very careful after these nasty episodes since my allergy threshold seems to very high these days.On 16 Aug 2010, at 01:18, Penny Houle wrote: Great point, Norman. I knew I was forgetting something. :-) That's a pretty key piece of the puzzle for those of us with chronic infections. These days, I don't necessarily remember how I got to some kind of understanding, I just remember that I got there. Such as not supplementing with iron, even if I test deficient, because that test is not necessarily an accurate representation of the real problem. I definitely should to go back and refresh my memory or understanding of a lot of things, because my memory is most definitely not as good as it used to be and whatever I've learned in the past is not necessarily infallible. However, I definitely remember that iron supplementation can be problematic for a number of reasons and I made the decision that it was not a good idea for me (I did take it for a while without any benefit or increase in my iron levels). Conversely, I saw immediate results from supplementing magnesium and B vitamins. But the B's can also be very tricky in getting the right balance, especially for pwcs who often have a lot of deficiencies to begin with, so just supplementing with a B-complex is not always the best thing either. What I learned from several years of intense nutrient supplementation is that each nutrient needs research and very careful trial and error. And that a lot of the supplements I tried were nothing but a big waste of money, no matter how good they may have sounded. That might be caused by my inability to absorb those nutrients, or it might be that many of these supplements aren't all that absorbable in general, or the general lack of overall quality or integrity in a lot of supplements. I would definitely recommend that anyone who wants to take supplements, get pharmaceutical grade. They may cost a bit more, but at least you know you're getting the real thing and can gauge your results with the real thing against future less expensive versions. Most of all, I think Barb has it right. We probably all would benefit from some kind of digestive enzymes to get the most out of supplements and meds in general, and to help our immune systems function better. >>>>>>>>>>> Dear Bleu>>> Are the Poms up to speed in testing for beta casein A1 intolerance?>>> Regards>>> R>>> [infections] Update>>>>>> HI Guys>>>>>> I had some very interesting tests recently which showed I was >>> genetically susceptible / predisposed to gluten intolerance and >>> celiac disease:>>>>>> HLA-DQB1 Molecular analysis, Allele 1 0302 ~ celiac disease>>>>>> HLA-DQB1 Molecular analysis, Allele 2 0501 ~ gluten intolerance>>>>>> Which I have no doubt about now having.>>>>>> This test was performed from the comfort of my home by! way of >>> some samples on swabs of cotton buds, by a company called Enterolab.>>>>>> https://www.enterolab.com/StaticPa ges/TestInfo.aspx#gene_gluten>>>>>> This test was $150 and worth every cent. The traditional test to >>> confirm celiac disease demands one does a gluten challenge first >>> (east gluten for 6 weeks) followed by an endoscopy where they take >>> 6 tissue samples. Being totally non invasive the genetic marker >>> test is evidently more elegant and arguably more accurate with the >>> high instance of false negatives using traditional tests.>>>>>> Most interestingly Enterolab suggest that many people who suffer >>> with (so-called) auto immune disorders, suffer also with gluten >>> intolerance and further state that gluten will exacerbate symptoms >>> of most AI conditions.>>>>>>>>> I also had another very interesting t! est carried out by a >>> company in the UK called yorktest.com who checked me for over 100 >>> different food intolerance's and found I reacted negatively to 22 >>> food types, only 4 of which I was previously aware of, 14 of which >>> I was consuming regularly.>>>>>>>>> The third was blood tests for iron levels and anemia. These showed :>>>>>> blood iron was 33ug/100ml :! normal range 50 to 180>>>>>> Also that coefficient de saturation en Fer de la transferrine >>> 10,8% : normal range 20 to 40%>>>>>> What I find odd is that I had NOT been checked before for these >>> two markers even th! ough last year I had a test for anemia and >>> that did not reveal a problem even though I suspected I was >>> anemic. Then they must have done other tests which did not reveal >>> any problems because this is the first time the iron in my blood >>> has been checked.>>>>>> My question is does this indicate I am anemic or just low on iron >>> in the blood, my Dr seemed to dismiss it as not too serious as the >>> total levels of iron proteines was 163,00 : normal range 30,00 to >>> 450,00>>>>>> I am a little confused since the Dr explained that last year that >>> these particular tests we not carried out because the total Iron >>> in the system seemed ok (was this an oversight?) and he indicated >>> that this low iron in the blood is not too serious? is this >>> correct or am I technically anemic?>>>>>> I am now taking iron tablets.>>>>>> Thanks for any feedback.>>>>>> bleu>>>>>>>>>>>> No virus found in this incoming message.>>> Checked by AVG - www.avg.com>>> Version: 9.0.851 / Virus Database: 271.1.1/3072 - Release Date: >>> 08/15/10 04:34:00>>>>>>> >