Re: Question for the women...sorry guys

[Guest guest]

Dear Rosemary,

Didn't have much luck understanding what the disease is, so I'm going to do

further reading, but I did run across one site that I thought - if you didn't

have it already - might be helpful, as it seems like a bit of a support/info

list for sufferers. I hope it might be of some help.

http://www.porphyriafoundation.com/

Please, please by all means - educate me in your own words, if you have the

time and energy. Thank you for any help, and I'm so very sorry to be so

thick headed.

Peace,

Terry in KC

Beyond that, here's a brief overview of some of the beginning lists of what I

found. I still can't figure it all out, but perhaps someone else can.

1. Porphyrias

The symptoms of porphyria cannot be completely explained by our current

understanding of the biochemical defect. The neurological symptoms

cannot be explained. They are especially puzzling since the metabolic

defect is confined to non-neural tissue,...

http://medic.bgu.ac.il/mirrors/netbiochem/hi6.htm

2. Porphyria

Porphyria is a disorder in which the body produces too much of the

chemical porphyrin. Porphyrin is used to make heme, the part of blood that

carries oxygen. Heme also gives blood its color. Any circulating

porphyrin the body doesn't use is...

http://www.niddk.nih.gov/health/digest/summary/porphria/porphria.htm

3. King 's Illness

King 's Illness -- Porphyria III suffered from the royal

hereditary disease porphyria which had tormented Queen of Scots, who

passed it on to her son, King I of England. It is caused by a

chemical insufficiency in the production...

http://www.lib.virginia.edu/exhibits/charlotte/porphyria.html

4. Porphyria, Acute from Pediatrics / Hematology

Porphyria, Acute - Porphyrias are caused by deficiency of an enzyme in

the heme production pathway. These deficiencies may be secondary to

inborn errors of ...

http://author.emedicine.com/PED/topic1870.htm

5. FEEDBACK

Porphyria is a fairly uncommon condition. It is not one condition, but a

group of several related diseases. Most of these are inherited but some

may be acquired. People with porphyria may develop skin problems or a

condition known as... ... Nausea,.........

http://www.uq.edu.au/porphyria/PORGUIDE3.htm

6. Examples of Porphyria

Acute intermittent porphyria is a defect of hepatic uroporphyrinogen I

synthase activity. porphobilinogen (the substrate) accumulates, and is

excreted in the urine. Note: analysis of the urine for porphobilinogen is

relatively simple. Heme synthesis...

http://www-medlib.med.utah.edu/NetBiochem/hi6c.htm

7. Porphyrias: Clinical Manifestations, Diagnosis and Treatment

MEDSTUDENTS-METABOLIC DISORDERS

Clinical manifestations, diagnosis, etiology and treatment of six types

of porphyrias are rapidly discussed. Pathogenesis constitutes a complex

and wide group of enzime deficiencies and is not described above.

http://www.medstudents.com.br/metdis/metdis3.htm

8. Comprehensive Protocol for Evaluating Disorders of Porphyrin Metabolism in

Chemically Sensitive Patients

MCS Referral & Resources offers By Albert Donnay, MHS, and Grace Ziem,

MD, DrPH (18 pages, $18, CLICK HERE TO ORDER) (soon to be

available for free online) The following information is excerpted from

the protocol: CHEMICAL INJURY AND DISORDERS... 2.......

http://www.mcsrr.org/factsheets/porphyri.html

9. Porphyrins, Phthalocyanines, Porphyria, Photodynamic Therapy

Porphynet provides information relevant to porphyrin and analogues

chemistry.

http://www.porphyrin.net/Mediporph/porphyria.html

10. Porphyria - Symptoms

http://www.iowaclinic.com/adam/ency/article/001208sym.shtml

11. Symptoms

Hepatitis C is an insidious disease. Unlike hepatitis A and B, people

with HCV seldom get sick when first infected with the virus. The virus may

quietly damage the liver for years before symptoms emerge. The majority

of chronic HCV carriers have.........

http://web.jccc.net/academic/cpe/homestudies/hepatitis/symptomsc.htm

12. Porphyria: Symptoms and Self-Assessment Test

porphyria.jpg Porphyria is an inherited disorder which causes excessive

production and excretion of chemicals in the body. The following

Self-Assessment for Porphyria will help you decide how to proceed. While

being symptom-free does not...

http://www.ibionet.com/porphyria.html

13. OS Dysfunctions and Diseases

Heart and Cardiovascular Disease Oxidative Stress Induced Dysfunctions

and Diseases Other Oxidative Stress Disorders Nervous System

Disorders Gastrointestinal Tract Ischemia Reflow States

Inflammatory-Immune injury AIDS Radiation-induced injuries...

<< --- Yes, , mine too gets worse when I start my menses..but that

is also contributed to the Porphyria that I have..you know just to

let everyone know ...Porphyria is becoming more and more diagnosed in

the US now when it was orignated in South America..and people are

very sick with it and no one is ever tested for it without asking the

dr for the 24 hour urine tests to diagnose it..and one of the side

affects of Porhyria is CP...my grandmother had it, my mom has it and

now I do..it is something worth investigating also, thanks,

Rosemary

>>

[Guest guest]

Dear Rosemary,

Didn't have much luck understanding what the disease is, so I'm going to do

further reading, but I did run across one site that I thought - if you didn't

have it already - might be helpful, as it seems like a bit of a support/info

list for sufferers. I hope it might be of some help.

http://www.porphyriafoundation.com/

Please, please by all means - educate me in your own words, if you have the

time and energy. Thank you for any help, and I'm so very sorry to be so

thick headed.

Peace,

Terry in KC

Beyond that, here's a brief overview of some of the beginning lists of what I

found. I still can't figure it all out, but perhaps someone else can.

1. Porphyrias

The symptoms of porphyria cannot be completely explained by our current

understanding of the biochemical defect. The neurological symptoms

cannot be explained. They are especially puzzling since the metabolic

defect is confined to non-neural tissue,...

http://medic.bgu.ac.il/mirrors/netbiochem/hi6.htm

2. Porphyria

Porphyria is a disorder in which the body produces too much of the

chemical porphyrin. Porphyrin is used to make heme, the part of blood that

carries oxygen. Heme also gives blood its color. Any circulating

porphyrin the body doesn't use is...

http://www.niddk.nih.gov/health/digest/summary/porphria/porphria.htm

3. King 's Illness

King 's Illness -- Porphyria III suffered from the royal

hereditary disease porphyria which had tormented Queen of Scots, who

passed it on to her son, King I of England. It is caused by a

chemical insufficiency in the production...

http://www.lib.virginia.edu/exhibits/charlotte/porphyria.html

4. Porphyria, Acute from Pediatrics / Hematology

Porphyria, Acute - Porphyrias are caused by deficiency of an enzyme in

the heme production pathway. These deficiencies may be secondary to

inborn errors of ...

http://author.emedicine.com/PED/topic1870.htm

5. FEEDBACK

Porphyria is a fairly uncommon condition. It is not one condition, but a

group of several related diseases. Most of these are inherited but some

may be acquired. People with porphyria may develop skin problems or a

condition known as... ... Nausea,.........

http://www.uq.edu.au/porphyria/PORGUIDE3.htm

6. Examples of Porphyria

Acute intermittent porphyria is a defect of hepatic uroporphyrinogen I

synthase activity. porphobilinogen (the substrate) accumulates, and is

excreted in the urine. Note: analysis of the urine for porphobilinogen is

relatively simple. Heme synthesis...

http://www-medlib.med.utah.edu/NetBiochem/hi6c.htm

7. Porphyrias: Clinical Manifestations, Diagnosis and Treatment

MEDSTUDENTS-METABOLIC DISORDERS

Clinical manifestations, diagnosis, etiology and treatment of six types

of porphyrias are rapidly discussed. Pathogenesis constitutes a complex

and wide group of enzime deficiencies and is not described above.

http://www.medstudents.com.br/metdis/metdis3.htm

8. Comprehensive Protocol for Evaluating Disorders of Porphyrin Metabolism in

Chemically Sensitive Patients

MCS Referral & Resources offers By Albert Donnay, MHS, and Grace Ziem,

MD, DrPH (18 pages, $18, CLICK HERE TO ORDER) (soon to be

available for free online) The following information is excerpted from

the protocol: CHEMICAL INJURY AND DISORDERS... 2.......

http://www.mcsrr.org/factsheets/porphyri.html

9. Porphyrins, Phthalocyanines, Porphyria, Photodynamic Therapy

Porphynet provides information relevant to porphyrin and analogues

chemistry.

http://www.porphyrin.net/Mediporph/porphyria.html

10. Porphyria - Symptoms

http://www.iowaclinic.com/adam/ency/article/001208sym.shtml

11. Symptoms

Hepatitis C is an insidious disease. Unlike hepatitis A and B, people

with HCV seldom get sick when first infected with the virus. The virus may

quietly damage the liver for years before symptoms emerge. The majority

of chronic HCV carriers have.........

http://web.jccc.net/academic/cpe/homestudies/hepatitis/symptomsc.htm

12. Porphyria: Symptoms and Self-Assessment Test

porphyria.jpg Porphyria is an inherited disorder which causes excessive

production and excretion of chemicals in the body. The following

Self-Assessment for Porphyria will help you decide how to proceed. While

being symptom-free does not...

http://www.ibionet.com/porphyria.html

13. OS Dysfunctions and Diseases

Heart and Cardiovascular Disease Oxidative Stress Induced Dysfunctions

and Diseases Other Oxidative Stress Disorders Nervous System

Disorders Gastrointestinal Tract Ischemia Reflow States

Inflammatory-Immune injury AIDS Radiation-induced injuries...

<< --- Yes, , mine too gets worse when I start my menses..but that

is also contributed to the Porphyria that I have..you know just to

let everyone know ...Porphyria is becoming more and more diagnosed in

the US now when it was orignated in South America..and people are

very sick with it and no one is ever tested for it without asking the

dr for the 24 hour urine tests to diagnose it..and one of the side

affects of Porhyria is CP...my grandmother had it, my mom has it and

now I do..it is something worth investigating also, thanks,

Rosemary

>>

[Guest guest]

Dear Rosemary,

Didn't have much luck understanding what the disease is, so I'm going to do

further reading, but I did run across one site that I thought - if you didn't

have it already - might be helpful, as it seems like a bit of a support/info

list for sufferers. I hope it might be of some help.

http://www.porphyriafoundation.com/

Please, please by all means - educate me in your own words, if you have the

time and energy. Thank you for any help, and I'm so very sorry to be so

thick headed.

Peace,

Terry in KC

Beyond that, here's a brief overview of some of the beginning lists of what I

found. I still can't figure it all out, but perhaps someone else can.

1. Porphyrias

The symptoms of porphyria cannot be completely explained by our current

understanding of the biochemical defect. The neurological symptoms

cannot be explained. They are especially puzzling since the metabolic

defect is confined to non-neural tissue,...

http://medic.bgu.ac.il/mirrors/netbiochem/hi6.htm

2. Porphyria

Porphyria is a disorder in which the body produces too much of the

chemical porphyrin. Porphyrin is used to make heme, the part of blood that

carries oxygen. Heme also gives blood its color. Any circulating

porphyrin the body doesn't use is...

http://www.niddk.nih.gov/health/digest/summary/porphria/porphria.htm

3. King 's Illness

King 's Illness -- Porphyria III suffered from the royal

hereditary disease porphyria which had tormented Queen of Scots, who

passed it on to her son, King I of England. It is caused by a

chemical insufficiency in the production...

http://www.lib.virginia.edu/exhibits/charlotte/porphyria.html

4. Porphyria, Acute from Pediatrics / Hematology

Porphyria, Acute - Porphyrias are caused by deficiency of an enzyme in

the heme production pathway. These deficiencies may be secondary to

inborn errors of ...

http://author.emedicine.com/PED/topic1870.htm

5. FEEDBACK

Porphyria is a fairly uncommon condition. It is not one condition, but a

group of several related diseases. Most of these are inherited but some

may be acquired. People with porphyria may develop skin problems or a

condition known as... ... Nausea,.........

http://www.uq.edu.au/porphyria/PORGUIDE3.htm

6. Examples of Porphyria

Acute intermittent porphyria is a defect of hepatic uroporphyrinogen I

synthase activity. porphobilinogen (the substrate) accumulates, and is

excreted in the urine. Note: analysis of the urine for porphobilinogen is

relatively simple. Heme synthesis...

http://www-medlib.med.utah.edu/NetBiochem/hi6c.htm

7. Porphyrias: Clinical Manifestations, Diagnosis and Treatment

MEDSTUDENTS-METABOLIC DISORDERS

Clinical manifestations, diagnosis, etiology and treatment of six types

of porphyrias are rapidly discussed. Pathogenesis constitutes a complex

and wide group of enzime deficiencies and is not described above.

http://www.medstudents.com.br/metdis/metdis3.htm

8. Comprehensive Protocol for Evaluating Disorders of Porphyrin Metabolism in

Chemically Sensitive Patients

MCS Referral & Resources offers By Albert Donnay, MHS, and Grace Ziem,

MD, DrPH (18 pages, $18, CLICK HERE TO ORDER) (soon to be

available for free online) The following information is excerpted from

the protocol: CHEMICAL INJURY AND DISORDERS... 2.......

http://www.mcsrr.org/factsheets/porphyri.html

9. Porphyrins, Phthalocyanines, Porphyria, Photodynamic Therapy

Porphynet provides information relevant to porphyrin and analogues

chemistry.

http://www.porphyrin.net/Mediporph/porphyria.html

10. Porphyria - Symptoms

http://www.iowaclinic.com/adam/ency/article/001208sym.shtml

11. Symptoms

Hepatitis C is an insidious disease. Unlike hepatitis A and B, people

with HCV seldom get sick when first infected with the virus. The virus may

quietly damage the liver for years before symptoms emerge. The majority

of chronic HCV carriers have.........

http://web.jccc.net/academic/cpe/homestudies/hepatitis/symptomsc.htm

12. Porphyria: Symptoms and Self-Assessment Test

porphyria.jpg Porphyria is an inherited disorder which causes excessive

production and excretion of chemicals in the body. The following

Self-Assessment for Porphyria will help you decide how to proceed. While

being symptom-free does not...

http://www.ibionet.com/porphyria.html

13. OS Dysfunctions and Diseases

Heart and Cardiovascular Disease Oxidative Stress Induced Dysfunctions

and Diseases Other Oxidative Stress Disorders Nervous System

Disorders Gastrointestinal Tract Ischemia Reflow States

Inflammatory-Immune injury AIDS Radiation-induced injuries...

<< --- Yes, , mine too gets worse when I start my menses..but that

is also contributed to the Porphyria that I have..you know just to

let everyone know ...Porphyria is becoming more and more diagnosed in

the US now when it was orignated in South America..and people are

very sick with it and no one is ever tested for it without asking the

dr for the 24 hour urine tests to diagnose it..and one of the side

affects of Porhyria is CP...my grandmother had it, my mom has it and

now I do..it is something worth investigating also, thanks,

Rosemary

>>

[Guest guest]

Dear Rosemary,

Didn't have much luck understanding what the disease is, so I'm going to do

further reading, but I did run across one site that I thought - if you didn't

have it already - might be helpful, as it seems like a bit of a support/info

list for sufferers. I hope it might be of some help.

http://www.porphyriafoundation.com/

Please, please by all means - educate me in your own words, if you have the

time and energy. Thank you for any help, and I'm so very sorry to be so

thick headed.

Peace,

Terry in KC

Beyond that, here's a brief overview of some of the beginning lists of what I

found. I still can't figure it all out, but perhaps someone else can.

1. Porphyrias

The symptoms of porphyria cannot be completely explained by our current

understanding of the biochemical defect. The neurological symptoms

cannot be explained. They are especially puzzling since the metabolic

defect is confined to non-neural tissue,...

http://medic.bgu.ac.il/mirrors/netbiochem/hi6.htm

2. Porphyria

Porphyria is a disorder in which the body produces too much of the

chemical porphyrin. Porphyrin is used to make heme, the part of blood that

carries oxygen. Heme also gives blood its color. Any circulating

porphyrin the body doesn't use is...

http://www.niddk.nih.gov/health/digest/summary/porphria/porphria.htm

3. King 's Illness

King 's Illness -- Porphyria III suffered from the royal

hereditary disease porphyria which had tormented Queen of Scots, who

passed it on to her son, King I of England. It is caused by a

chemical insufficiency in the production...

http://www.lib.virginia.edu/exhibits/charlotte/porphyria.html

4. Porphyria, Acute from Pediatrics / Hematology

Porphyria, Acute - Porphyrias are caused by deficiency of an enzyme in

the heme production pathway. These deficiencies may be secondary to

inborn errors of ...

http://author.emedicine.com/PED/topic1870.htm

5. FEEDBACK

Porphyria is a fairly uncommon condition. It is not one condition, but a

group of several related diseases. Most of these are inherited but some

may be acquired. People with porphyria may develop skin problems or a

condition known as... ... Nausea,.........

http://www.uq.edu.au/porphyria/PORGUIDE3.htm

6. Examples of Porphyria

Acute intermittent porphyria is a defect of hepatic uroporphyrinogen I

synthase activity. porphobilinogen (the substrate) accumulates, and is

excreted in the urine. Note: analysis of the urine for porphobilinogen is

relatively simple. Heme synthesis...

http://www-medlib.med.utah.edu/NetBiochem/hi6c.htm

7. Porphyrias: Clinical Manifestations, Diagnosis and Treatment

MEDSTUDENTS-METABOLIC DISORDERS

Clinical manifestations, diagnosis, etiology and treatment of six types

of porphyrias are rapidly discussed. Pathogenesis constitutes a complex

and wide group of enzime deficiencies and is not described above.

http://www.medstudents.com.br/metdis/metdis3.htm

8. Comprehensive Protocol for Evaluating Disorders of Porphyrin Metabolism in

Chemically Sensitive Patients

MCS Referral & Resources offers By Albert Donnay, MHS, and Grace Ziem,

MD, DrPH (18 pages, $18, CLICK HERE TO ORDER) (soon to be

available for free online) The following information is excerpted from

the protocol: CHEMICAL INJURY AND DISORDERS... 2.......

http://www.mcsrr.org/factsheets/porphyri.html

9. Porphyrins, Phthalocyanines, Porphyria, Photodynamic Therapy

Porphynet provides information relevant to porphyrin and analogues

chemistry.

http://www.porphyrin.net/Mediporph/porphyria.html

10. Porphyria - Symptoms

http://www.iowaclinic.com/adam/ency/article/001208sym.shtml

11. Symptoms

Hepatitis C is an insidious disease. Unlike hepatitis A and B, people

with HCV seldom get sick when first infected with the virus. The virus may

quietly damage the liver for years before symptoms emerge. The majority

of chronic HCV carriers have.........

http://web.jccc.net/academic/cpe/homestudies/hepatitis/symptomsc.htm

12. Porphyria: Symptoms and Self-Assessment Test

porphyria.jpg Porphyria is an inherited disorder which causes excessive

production and excretion of chemicals in the body. The following

Self-Assessment for Porphyria will help you decide how to proceed. While

being symptom-free does not...

http://www.ibionet.com/porphyria.html

13. OS Dysfunctions and Diseases

Heart and Cardiovascular Disease Oxidative Stress Induced Dysfunctions

and Diseases Other Oxidative Stress Disorders Nervous System

Disorders Gastrointestinal Tract Ischemia Reflow States

Inflammatory-Immune injury AIDS Radiation-induced injuries...

<< --- Yes, , mine too gets worse when I start my menses..but that

is also contributed to the Porphyria that I have..you know just to

let everyone know ...Porphyria is becoming more and more diagnosed in

the US now when it was orignated in South America..and people are

very sick with it and no one is ever tested for it without asking the

dr for the 24 hour urine tests to diagnose it..and one of the side

affects of Porhyria is CP...my grandmother had it, my mom has it and

now I do..it is something worth investigating also, thanks,

Rosemary

>>

[Guest guest]

--- Yes, , mine too gets worse when I start my menses..but that

is also contributed to the Porphyria that I have..you know just to

let everyone know ...Porphyria is becoming more and more diagnosed in

the US now when it was orignated in South America..and people are

very sick with it and no one is ever tested for it without asking the

dr for the 24 hour urine tests to diagnose it..and one of the side

affects of Porhyria is CP...my grandmother had it, my mom has it and

now I do..it is something worth investigating also, thanks,

Rosemary

In pancreatitis@y..., Hallock wrote:

>

> Hello Ladies,

>

> Just wondering... I remember someone mentioning awhile backt hat

they get worse pain during their menstual cycle. Does the CP affect

the flow and stuff too...cramping and the like?

>

> I am having an awful time this time and I started hurting worse

Friday (Physical exertion from the sale and cramping from PMS) and

now I am having terrible flank pain and my urine is dark yellow, even

though I drink about 128+ oz of water a day. I talked tot he nurse

at the GI...she said to call my GYN or family doc...but if its just

menstral I don't see a point, I mean it'll be over in 4 days...right?

>

> Thanks Ladies...

>

> {{{HUGZ}}}

>

>

>

>

>

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

>

[Guest guest]

--- Yes, , mine too gets worse when I start my menses..but that

is also contributed to the Porphyria that I have..you know just to

let everyone know ...Porphyria is becoming more and more diagnosed in

the US now when it was orignated in South America..and people are

very sick with it and no one is ever tested for it without asking the

dr for the 24 hour urine tests to diagnose it..and one of the side

affects of Porhyria is CP...my grandmother had it, my mom has it and

now I do..it is something worth investigating also, thanks,

Rosemary

In pancreatitis@y..., Hallock wrote:

>

> Hello Ladies,

>

> Just wondering... I remember someone mentioning awhile backt hat

they get worse pain during their menstual cycle. Does the CP affect

the flow and stuff too...cramping and the like?

>

> I am having an awful time this time and I started hurting worse

Friday (Physical exertion from the sale and cramping from PMS) and

now I am having terrible flank pain and my urine is dark yellow, even

though I drink about 128+ oz of water a day. I talked tot he nurse

at the GI...she said to call my GYN or family doc...but if its just

menstral I don't see a point, I mean it'll be over in 4 days...right?

>

> Thanks Ladies...

>

> {{{HUGZ}}}

>

>

>

>

>

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

>

[Guest guest]

--- Yes, , mine too gets worse when I start my menses..but that

is also contributed to the Porphyria that I have..you know just to

let everyone know ...Porphyria is becoming more and more diagnosed in

the US now when it was orignated in South America..and people are

very sick with it and no one is ever tested for it without asking the

dr for the 24 hour urine tests to diagnose it..and one of the side

affects of Porhyria is CP...my grandmother had it, my mom has it and

now I do..it is something worth investigating also, thanks,

Rosemary

In pancreatitis@y..., Hallock wrote:

>

> Hello Ladies,

>

> Just wondering... I remember someone mentioning awhile backt hat

they get worse pain during their menstual cycle. Does the CP affect

the flow and stuff too...cramping and the like?

>

> I am having an awful time this time and I started hurting worse

Friday (Physical exertion from the sale and cramping from PMS) and

now I am having terrible flank pain and my urine is dark yellow, even

though I drink about 128+ oz of water a day. I talked tot he nurse

at the GI...she said to call my GYN or family doc...but if its just

menstral I don't see a point, I mean it'll be over in 4 days...right?

>

> Thanks Ladies...

>

> {{{HUGZ}}}

>

>

>

>

>

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

>

[Guest guest]

--- Yes, , mine too gets worse when I start my menses..but that

is also contributed to the Porphyria that I have..you know just to

let everyone know ...Porphyria is becoming more and more diagnosed in

the US now when it was orignated in South America..and people are

very sick with it and no one is ever tested for it without asking the

dr for the 24 hour urine tests to diagnose it..and one of the side

affects of Porhyria is CP...my grandmother had it, my mom has it and

now I do..it is something worth investigating also, thanks,

Rosemary

In pancreatitis@y..., Hallock wrote:

>

> Hello Ladies,

>

> Just wondering... I remember someone mentioning awhile backt hat

they get worse pain during their menstual cycle. Does the CP affect

the flow and stuff too...cramping and the like?

>

> I am having an awful time this time and I started hurting worse

Friday (Physical exertion from the sale and cramping from PMS) and

now I am having terrible flank pain and my urine is dark yellow, even

though I drink about 128+ oz of water a day. I talked tot he nurse

at the GI...she said to call my GYN or family doc...but if its just

menstral I don't see a point, I mean it'll be over in 4 days...right?

>

> Thanks Ladies...

>

> {{{HUGZ}}}

>

>

>

>

>

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

>

[Guest guest]

>

>Reply-To: pancreatitis

>To: PAI Group pancreatitis >

>Subject: Question for the women...sorry guys

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>List-Unsubscribe: pancreatitis-unsubscribe >

>

>

>Hello Ladies,

>

>Just wondering... I remember someone mentioning awhile backt hat they get

>worse pain during their menstual cycle. Does the CP affect the flow and

>stuff too...cramping and the like?

>

>I am having an awful time this time and I started hurting worse Friday

>(Physical exertion from the sale and cramping from PMS) and now I am having

>terrible flank pain and my urine is dark yellow, even though I drink about

>128+ oz of water a day. I talked tot he nurse at the GI...she said to call

>my GYN or family doc...but if its just menstral I don't see a point, I mean

>it'll be over in 4 days...right?

>

>Thanks Ladies...

>

>{{{HUGZ}}}

>

>

>

>

>:

You need to get it checked out. Dark Urine could mean blood also. Maybe you

have a stone.-- Trust me I know this from many experiences. I hope you feel

better soon.

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

>

[Guest guest]

>

>Reply-To: pancreatitis

>To: PAI Group pancreatitis >

>Subject: Question for the women...sorry guys

>Date: Mon, 29 Jul 2002 12:25:39 -0700 (PDT)

>MIME-Version: 1.0

>Received: from [66.218.66.72] by hotmail.com (3.2) with ESMTP id

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>2002 19:25:42 -0000

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>Received: from [172.153.117.145] by web14807.mail.yahoo.com via HTTP; Mon,

>29 Jul 2002 12:25:39 PDT

>From sentto-278417-33931-1027970741-shannontuten Mon, 29 Jul 2002 12:34:01

>-0700

>X-eGroups-Return:

>sentto-278417-33931-1027970741-shannontuten=hotmail.com@...\

m

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>X-Apparently-To: pancreatitis

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>X-Yahoo-Profile: no_1_red_head

>Mailing-List: list pancreatitis ; contact

>pancreatitis-owner

>Delivered-To: mailing list pancreatitis

>Precedence: bulk

>List-Unsubscribe: pancreatitis-unsubscribe >

>

>

>Hello Ladies,

>

>Just wondering... I remember someone mentioning awhile backt hat they get

>worse pain during their menstual cycle. Does the CP affect the flow and

>stuff too...cramping and the like?

>

>I am having an awful time this time and I started hurting worse Friday

>(Physical exertion from the sale and cramping from PMS) and now I am having

>terrible flank pain and my urine is dark yellow, even though I drink about

>128+ oz of water a day. I talked tot he nurse at the GI...she said to call

>my GYN or family doc...but if its just menstral I don't see a point, I mean

>it'll be over in 4 days...right?

>

>Thanks Ladies...

>

>{{{HUGZ}}}

>

>

>

>

>:

You need to get it checked out. Dark Urine could mean blood also. Maybe you

have a stone.-- Trust me I know this from many experiences. I hope you feel

better soon.

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

>

[Guest guest]

>

>Reply-To: pancreatitis

>To: PAI Group pancreatitis >

>Subject: Question for the women...sorry guys

>Date: Mon, 29 Jul 2002 12:25:39 -0700 (PDT)

>MIME-Version: 1.0

>Received: from [66.218.66.72] by hotmail.com (3.2) with ESMTP id

>MHotMailBF0EE30900734004321B42DA42485E8833; Mon, 29 Jul 2002 12:32:06 -0700

>Received: from [66.218.67.196] by n17.grp.scd.yahoo.com with NNFMP; 29 Jul

>2002 19:25:42 -0000

>Received: (EGP: mail-8_0_7_4); 29 Jul 2002 19:25:40 -0000

>Received: (qmail 31470 invoked from network); 29 Jul 2002 19:25:40 -0000

>Received: from unknown (66.218.66.216) by m3.grp.scd.yahoo.com with QMQP;

>29 Jul 2002 19:25:40 -0000

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>mta1.grp.scd.yahoo.com with SMTP; 29 Jul 2002 19:25:40 -0000

>Received: from [172.153.117.145] by web14807.mail.yahoo.com via HTTP; Mon,

>29 Jul 2002 12:25:39 PDT

>From sentto-278417-33931-1027970741-shannontuten Mon, 29 Jul 2002 12:34:01

>-0700

>X-eGroups-Return:

>sentto-278417-33931-1027970741-shannontuten=hotmail.com@...\

m

>X-Sender: no_1_red_head@...

>X-Apparently-To: pancreatitis

>Message-ID: 20020729192539.18154.qmail@...>

>X-Yahoo-Profile: no_1_red_head

>Mailing-List: list pancreatitis ; contact

>pancreatitis-owner

>Delivered-To: mailing list pancreatitis

>Precedence: bulk

>List-Unsubscribe: pancreatitis-unsubscribe >

>

>

>Hello Ladies,

>

>Just wondering... I remember someone mentioning awhile backt hat they get

>worse pain during their menstual cycle. Does the CP affect the flow and

>stuff too...cramping and the like?

>

>I am having an awful time this time and I started hurting worse Friday

>(Physical exertion from the sale and cramping from PMS) and now I am having

>terrible flank pain and my urine is dark yellow, even though I drink about

>128+ oz of water a day. I talked tot he nurse at the GI...she said to call

>my GYN or family doc...but if its just menstral I don't see a point, I mean

>it'll be over in 4 days...right?

>

>Thanks Ladies...

>

>{{{HUGZ}}}

>

>

>

>

>:

You need to get it checked out. Dark Urine could mean blood also. Maybe you

have a stone.-- Trust me I know this from many experiences. I hope you feel

better soon.

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

>

[Guest guest]

>

>Reply-To: pancreatitis

>To: PAI Group pancreatitis >

>Subject: Question for the women...sorry guys

>Date: Mon, 29 Jul 2002 12:25:39 -0700 (PDT)

>MIME-Version: 1.0

>Received: from [66.218.66.72] by hotmail.com (3.2) with ESMTP id

>MHotMailBF0EE30900734004321B42DA42485E8833; Mon, 29 Jul 2002 12:32:06 -0700

>Received: from [66.218.67.196] by n17.grp.scd.yahoo.com with NNFMP; 29 Jul

>2002 19:25:42 -0000

>Received: (EGP: mail-8_0_7_4); 29 Jul 2002 19:25:40 -0000

>Received: (qmail 31470 invoked from network); 29 Jul 2002 19:25:40 -0000

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>29 Jul 2002 19:25:40 -0000

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>mta1.grp.scd.yahoo.com with SMTP; 29 Jul 2002 19:25:40 -0000

>Received: from [172.153.117.145] by web14807.mail.yahoo.com via HTTP; Mon,

>29 Jul 2002 12:25:39 PDT

>From sentto-278417-33931-1027970741-shannontuten Mon, 29 Jul 2002 12:34:01

>-0700

>X-eGroups-Return:

>sentto-278417-33931-1027970741-shannontuten=hotmail.com@...\

m

>X-Sender: no_1_red_head@...

>X-Apparently-To: pancreatitis

>Message-ID: 20020729192539.18154.qmail@...>

>X-Yahoo-Profile: no_1_red_head

>Mailing-List: list pancreatitis ; contact

>pancreatitis-owner

>Delivered-To: mailing list pancreatitis

>Precedence: bulk

>List-Unsubscribe: pancreatitis-unsubscribe >

>

>

>Hello Ladies,

>

>Just wondering... I remember someone mentioning awhile backt hat they get

>worse pain during their menstual cycle. Does the CP affect the flow and

>stuff too...cramping and the like?

>

>I am having an awful time this time and I started hurting worse Friday

>(Physical exertion from the sale and cramping from PMS) and now I am having

>terrible flank pain and my urine is dark yellow, even though I drink about

>128+ oz of water a day. I talked tot he nurse at the GI...she said to call

>my GYN or family doc...but if its just menstral I don't see a point, I mean

>it'll be over in 4 days...right?

>

>Thanks Ladies...

>

>{{{HUGZ}}}

>

>

>

>

>:

You need to get it checked out. Dark Urine could mean blood also. Maybe you

have a stone.-- Trust me I know this from many experiences. I hope you feel

better soon.

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

>

[Guest guest]

Thanks for the heads up , I will.

{{{HUGZ}}}

SHANNON TUTEN shannontuten@...> wrote:

>:

You need to get it checked out. Dark Urine could mean blood also. Maybe you

have a stone.-- Trust me I know this from many experiences. I hope you feel

better soon.

---------------------------------

[Guest guest]

Thanks for the heads up , I will.

{{{HUGZ}}}

SHANNON TUTEN shannontuten@...> wrote:

>:

You need to get it checked out. Dark Urine could mean blood also. Maybe you

have a stone.-- Trust me I know this from many experiences. I hope you feel

better soon.

---------------------------------

[Guest guest]

Thanks for the heads up , I will.

{{{HUGZ}}}

SHANNON TUTEN shannontuten@...> wrote:

>:

You need to get it checked out. Dark Urine could mean blood also. Maybe you

have a stone.-- Trust me I know this from many experiences. I hope you feel

better soon.

---------------------------------

[Guest guest]

Thanks for the heads up , I will.

{{{HUGZ}}}

SHANNON TUTEN shannontuten@...> wrote:

>:

You need to get it checked out. Dark Urine could mean blood also. Maybe you

have a stone.-- Trust me I know this from many experiences. I hope you feel

better soon.

---------------------------------

[Guest guest]

To all...

Rosemary was kind enough to send this information along to me, and I wanted

to share it with the group, as it certainly seems there is a great deal of

overlap with CP, and the two are clearly related. There may well be others

in this group who suffer from Porpyria and aren't even aware of it. I didn't

realize that one of my problems was Gastroparesis until Karyn shared her

experience with it some six months after I had been a member of this group,

and after I did extensive research and mentioned it to my PCP, we did a quick

test and sure enough - and the Dx of that disease has meant a great deal of

progress in the treatment of my CP... Hence, I am forwarding this along in

hopes that others, if in fact they might suffer from this malady, might get a

flicker of interest and do some research and possibly learn something about

their own disease process.

Once again, THANK YOU Rosemary for the detailed information, and I wish you

all good things in your journey to deal with/live with/battle this terribly

illness - may God lead you, heal you, direct you, bring you peace and comfort

with this and all that ails you.

Thank you again for sharing of yourself so deeply.

Peace & Love,

Terry in KC

[Guest guest]

To all...

Rosemary was kind enough to send this information along to me, and I wanted

to share it with the group, as it certainly seems there is a great deal of

overlap with CP, and the two are clearly related. There may well be others

in this group who suffer from Porpyria and aren't even aware of it. I didn't

realize that one of my problems was Gastroparesis until Karyn shared her

experience with it some six months after I had been a member of this group,

and after I did extensive research and mentioned it to my PCP, we did a quick

test and sure enough - and the Dx of that disease has meant a great deal of

progress in the treatment of my CP... Hence, I am forwarding this along in

hopes that others, if in fact they might suffer from this malady, might get a

flicker of interest and do some research and possibly learn something about

their own disease process.

Once again, THANK YOU Rosemary for the detailed information, and I wish you

all good things in your journey to deal with/live with/battle this terribly

illness - may God lead you, heal you, direct you, bring you peace and comfort

with this and all that ails you.

Thank you again for sharing of yourself so deeply.

Peace & Love,

Terry in KC

[Guest guest]

To all...

Rosemary was kind enough to send this information along to me, and I wanted

to share it with the group, as it certainly seems there is a great deal of

overlap with CP, and the two are clearly related. There may well be others

in this group who suffer from Porpyria and aren't even aware of it. I didn't

realize that one of my problems was Gastroparesis until Karyn shared her

experience with it some six months after I had been a member of this group,

and after I did extensive research and mentioned it to my PCP, we did a quick

test and sure enough - and the Dx of that disease has meant a great deal of

progress in the treatment of my CP... Hence, I am forwarding this along in

hopes that others, if in fact they might suffer from this malady, might get a

flicker of interest and do some research and possibly learn something about

their own disease process.

Once again, THANK YOU Rosemary for the detailed information, and I wish you

all good things in your journey to deal with/live with/battle this terribly

illness - may God lead you, heal you, direct you, bring you peace and comfort

with this and all that ails you.

Thank you again for sharing of yourself so deeply.

Peace & Love,

Terry in KC

[Guest guest]

<< Terry,

I think you meant to forward something that Rosemary sent

you on in this email, but it didn't come through. Remember,

attachments get stripped from the mail. You need to either

foward without attachments or copy and paste the text into

a new memo.

Kimber >>

Dear Kimber,

You are so right - I forgot that I could not simply " Forward " an e-mail to

this list. Thank you for reminding me that this simply does not work.

Below, please find a copy/paste version of said exchange. Thanks again.

____________________________________________________

To all...

Rosemary was kind enough to send this information along to me, and I wanted

to share it with the group, as it certainly seems there is a great deal of

overlap with CP, and the two are clearly related. There may well be others

in this group who suffer from Porpyria and aren't even aware of it. I didn't

realize that one of my problems was Gastroparesis until Karyn shared her ex

perience with it some six months after I had been a member of this group, and

after I did extensive research and mentioned it to my PCP, we did a quick

test and sure enough - and the Dx of that disease has meant a great deal of

progress in the treatment of my CP... Hence, I am forwarding this along in

hopes that others, if in fact they might suffer from this malady, might get a

flicker of interest and do some research and possibly learn something about

their own disease process.

Once again, THANK YOU Rosemary for the detailed information, and I wish you

all good things in your journey to deal with/live with/battle this terribly

illness - may God lead you, heal you, direct you, bring you peace and comfort

with this and all that ails you.

Thank you again for sharing of yourself so deeply.

Peace & Love,

Terry in KC

-----------------

Forwarded Message:

Subj: Re: Re: Question for the women...sorry guys

Date: Monday, July 29, 2002 6:26:01 PM

From: sassyroe1@...

To: RogueKC@...

From: sassyroe1@... (Roe Campisi)

To: RogueKC@...

Hi Terry, thank you for the email and all the info you sent with it..

Well, Porphyria is not a well known disease unfourtunalty in the US and it is

much more misdiagnosed than CP, but here is the story on how we found out my

mom had it which is quite extroidenary..When I was pregnant with my first son

at 17 years old, my mom was on her deathbed in the hospital..she was in

aganizing pain, her enzymes for her pancreas were high, her liver enzymes

were high, but really all her blood tests were so out of wack, and no one

knew what she had, so they couldnt help her. Since her pancreas was showing

an acute attack they had her npo, she didnt eat for weeks, and she was not

getting any better. A nun was her doctor and she talked with all of us

telling us my mom was passing away...Turns out 3 days later, my mom was up in

bed and talking and starting to eat..I couldnt believe it. I asked the nun

doctor, what happened?? She said she was praying every day for my mom , and

the night she told us my mom was dying, a vision came to her that night on

how to treat my mom, but not what my mom has, so being a nun, she went to the

hospital and started giving my mom HEME, in her iv among other things, and

then went to the library when my mom was getting better to look up the

disease that requires heme...and it was porphyria..they did the tests on her,

and sure enuff her urine contained high concentration of Porphrins. No Doctor

at the time ever heard of it, the info she got was from South Africa, and

England...Then when I started getting sick after my 2nd child, I was tested

and sure enough I have it too. It is a genetic blood disease that could

affect you in any way it wants..everyone who has it , has it different..we

have the acute intermittant porphyria. It causes us to have elevated enzymes

in liver and pancreas...but my cp was brought on since I was a child, and it

is just so damaged now from all the acute attacks through all the years, and

still ...we have also neurilogical problems, mine right now, is just

depression, and some psycotic episodes that both are controlled with

medication. But just as CP gets worse, so does Porphyria..my mom now has

strokes and epileptic seizures, she has diabities from cp ..she is not well

at all...it is 50% that your kids will get it and I have 3, so I look for

signs all the time. Hopefully by the time they get sick if they do, they

might have some kind of cure or at least something to stop the progression of

both diseases. I pray. Still, when I tell dr's I have Porpyria, either they

ask me what that is, or they ask , oh, you cant go in the sun...OH MY GOD!!

One form of poyphria gives you leisions on your skin when you go in the

sun..there are SO many different kinds of porpyria, and doctors are just not

aware of it..The best website for info is from South Africa...My computer

crashed and I just got a new one now, I am still searching for it, when I

find it I will send it to the group. I had so much info on my other hard

drive!!! I was not sure if I should post all this on the board, but if you

feel they would be interested in this story, please you can post it on the

board ok? You can email me anytime..and if you have a specific question dont

hesitate to email me, or IM me, my yahoo id is also Sassyroe1...Hope to see

you in chat later..i will try to go on once my little one goes to sleep.

What is your story? I just joined the board 5 days ago, I havent had a

computer in over a year so it is real nice to be back on haha..so lost

without it! Talk to you soon!

Rosemary

Love You very much!

Rosemary

[Guest guest]

<< Terry,

I think you meant to forward something that Rosemary sent

you on in this email, but it didn't come through. Remember,

attachments get stripped from the mail. You need to either

foward without attachments or copy and paste the text into

a new memo.

Kimber >>

Dear Kimber,

You are so right - I forgot that I could not simply " Forward " an e-mail to

this list. Thank you for reminding me that this simply does not work.

Below, please find a copy/paste version of said exchange. Thanks again.

____________________________________________________

To all...

Rosemary was kind enough to send this information along to me, and I wanted

to share it with the group, as it certainly seems there is a great deal of

overlap with CP, and the two are clearly related. There may well be others

in this group who suffer from Porpyria and aren't even aware of it. I didn't

realize that one of my problems was Gastroparesis until Karyn shared her ex

perience with it some six months after I had been a member of this group, and

after I did extensive research and mentioned it to my PCP, we did a quick

test and sure enough - and the Dx of that disease has meant a great deal of

progress in the treatment of my CP... Hence, I am forwarding this along in

hopes that others, if in fact they might suffer from this malady, might get a

flicker of interest and do some research and possibly learn something about

their own disease process.

Once again, THANK YOU Rosemary for the detailed information, and I wish you

all good things in your journey to deal with/live with/battle this terribly

illness - may God lead you, heal you, direct you, bring you peace and comfort

with this and all that ails you.

Thank you again for sharing of yourself so deeply.

Peace & Love,

Terry in KC

-----------------

Forwarded Message:

Subj: Re: Re: Question for the women...sorry guys

Date: Monday, July 29, 2002 6:26:01 PM

From: sassyroe1@...

To: RogueKC@...

From: sassyroe1@... (Roe Campisi)

To: RogueKC@...

Hi Terry, thank you for the email and all the info you sent with it..

Well, Porphyria is not a well known disease unfourtunalty in the US and it is

much more misdiagnosed than CP, but here is the story on how we found out my

mom had it which is quite extroidenary..When I was pregnant with my first son

at 17 years old, my mom was on her deathbed in the hospital..she was in

aganizing pain, her enzymes for her pancreas were high, her liver enzymes

were high, but really all her blood tests were so out of wack, and no one

knew what she had, so they couldnt help her. Since her pancreas was showing

an acute attack they had her npo, she didnt eat for weeks, and she was not

getting any better. A nun was her doctor and she talked with all of us

telling us my mom was passing away...Turns out 3 days later, my mom was up in

bed and talking and starting to eat..I couldnt believe it. I asked the nun

doctor, what happened?? She said she was praying every day for my mom , and

the night she told us my mom was dying, a vision came to her that night on

how to treat my mom, but not what my mom has, so being a nun, she went to the

hospital and started giving my mom HEME, in her iv among other things, and

then went to the library when my mom was getting better to look up the

disease that requires heme...and it was porphyria..they did the tests on her,

and sure enuff her urine contained high concentration of Porphrins. No Doctor

at the time ever heard of it, the info she got was from South Africa, and

England...Then when I started getting sick after my 2nd child, I was tested

and sure enough I have it too. It is a genetic blood disease that could

affect you in any way it wants..everyone who has it , has it different..we

have the acute intermittant porphyria. It causes us to have elevated enzymes

in liver and pancreas...but my cp was brought on since I was a child, and it

is just so damaged now from all the acute attacks through all the years, and

still ...we have also neurilogical problems, mine right now, is just

depression, and some psycotic episodes that both are controlled with

medication. But just as CP gets worse, so does Porphyria..my mom now has

strokes and epileptic seizures, she has diabities from cp ..she is not well

at all...it is 50% that your kids will get it and I have 3, so I look for

signs all the time. Hopefully by the time they get sick if they do, they

might have some kind of cure or at least something to stop the progression of

both diseases. I pray. Still, when I tell dr's I have Porpyria, either they

ask me what that is, or they ask , oh, you cant go in the sun...OH MY GOD!!

One form of poyphria gives you leisions on your skin when you go in the

sun..there are SO many different kinds of porpyria, and doctors are just not

aware of it..The best website for info is from South Africa...My computer

crashed and I just got a new one now, I am still searching for it, when I

find it I will send it to the group. I had so much info on my other hard

drive!!! I was not sure if I should post all this on the board, but if you

feel they would be interested in this story, please you can post it on the

board ok? You can email me anytime..and if you have a specific question dont

hesitate to email me, or IM me, my yahoo id is also Sassyroe1...Hope to see

you in chat later..i will try to go on once my little one goes to sleep.

What is your story? I just joined the board 5 days ago, I havent had a

computer in over a year so it is real nice to be back on haha..so lost

without it! Talk to you soon!

Rosemary

Love You very much!

Rosemary

[Guest guest]

<< Terry,

I think you meant to forward something that Rosemary sent

you on in this email, but it didn't come through. Remember,

attachments get stripped from the mail. You need to either

foward without attachments or copy and paste the text into

a new memo.

Kimber >>

Dear Kimber,

You are so right - I forgot that I could not simply " Forward " an e-mail to

this list. Thank you for reminding me that this simply does not work.

Below, please find a copy/paste version of said exchange. Thanks again.

____________________________________________________

To all...

Rosemary was kind enough to send this information along to me, and I wanted

to share it with the group, as it certainly seems there is a great deal of

overlap with CP, and the two are clearly related. There may well be others

in this group who suffer from Porpyria and aren't even aware of it. I didn't

realize that one of my problems was Gastroparesis until Karyn shared her ex

perience with it some six months after I had been a member of this group, and

after I did extensive research and mentioned it to my PCP, we did a quick

test and sure enough - and the Dx of that disease has meant a great deal of

progress in the treatment of my CP... Hence, I am forwarding this along in

hopes that others, if in fact they might suffer from this malady, might get a

flicker of interest and do some research and possibly learn something about

their own disease process.

Once again, THANK YOU Rosemary for the detailed information, and I wish you

all good things in your journey to deal with/live with/battle this terribly

illness - may God lead you, heal you, direct you, bring you peace and comfort

with this and all that ails you.

Thank you again for sharing of yourself so deeply.

Peace & Love,

Terry in KC

-----------------

Forwarded Message:

Subj: Re: Re: Question for the women...sorry guys

Date: Monday, July 29, 2002 6:26:01 PM

From: sassyroe1@...

To: RogueKC@...

From: sassyroe1@... (Roe Campisi)

To: RogueKC@...

Hi Terry, thank you for the email and all the info you sent with it..

Well, Porphyria is not a well known disease unfourtunalty in the US and it is

much more misdiagnosed than CP, but here is the story on how we found out my

mom had it which is quite extroidenary..When I was pregnant with my first son

at 17 years old, my mom was on her deathbed in the hospital..she was in

aganizing pain, her enzymes for her pancreas were high, her liver enzymes

were high, but really all her blood tests were so out of wack, and no one

knew what she had, so they couldnt help her. Since her pancreas was showing

an acute attack they had her npo, she didnt eat for weeks, and she was not

getting any better. A nun was her doctor and she talked with all of us

telling us my mom was passing away...Turns out 3 days later, my mom was up in

bed and talking and starting to eat..I couldnt believe it. I asked the nun

doctor, what happened?? She said she was praying every day for my mom , and

the night she told us my mom was dying, a vision came to her that night on

how to treat my mom, but not what my mom has, so being a nun, she went to the

hospital and started giving my mom HEME, in her iv among other things, and

then went to the library when my mom was getting better to look up the

disease that requires heme...and it was porphyria..they did the tests on her,

and sure enuff her urine contained high concentration of Porphrins. No Doctor

at the time ever heard of it, the info she got was from South Africa, and

England...Then when I started getting sick after my 2nd child, I was tested

and sure enough I have it too. It is a genetic blood disease that could

affect you in any way it wants..everyone who has it , has it different..we

have the acute intermittant porphyria. It causes us to have elevated enzymes

in liver and pancreas...but my cp was brought on since I was a child, and it

is just so damaged now from all the acute attacks through all the years, and

still ...we have also neurilogical problems, mine right now, is just

depression, and some psycotic episodes that both are controlled with

medication. But just as CP gets worse, so does Porphyria..my mom now has

strokes and epileptic seizures, she has diabities from cp ..she is not well

at all...it is 50% that your kids will get it and I have 3, so I look for

signs all the time. Hopefully by the time they get sick if they do, they

might have some kind of cure or at least something to stop the progression of

both diseases. I pray. Still, when I tell dr's I have Porpyria, either they

ask me what that is, or they ask , oh, you cant go in the sun...OH MY GOD!!

One form of poyphria gives you leisions on your skin when you go in the

sun..there are SO many different kinds of porpyria, and doctors are just not

aware of it..The best website for info is from South Africa...My computer

crashed and I just got a new one now, I am still searching for it, when I

find it I will send it to the group. I had so much info on my other hard

drive!!! I was not sure if I should post all this on the board, but if you

feel they would be interested in this story, please you can post it on the

board ok? You can email me anytime..and if you have a specific question dont

hesitate to email me, or IM me, my yahoo id is also Sassyroe1...Hope to see

you in chat later..i will try to go on once my little one goes to sleep.

What is your story? I just joined the board 5 days ago, I havent had a

computer in over a year so it is real nice to be back on haha..so lost

without it! Talk to you soon!

Rosemary

Love You very much!

Rosemary

[Guest guest]

<< Terry,

I think you meant to forward something that Rosemary sent

you on in this email, but it didn't come through. Remember,

attachments get stripped from the mail. You need to either

foward without attachments or copy and paste the text into

a new memo.

Kimber >>

Dear Kimber,

You are so right - I forgot that I could not simply " Forward " an e-mail to

this list. Thank you for reminding me that this simply does not work.

Below, please find a copy/paste version of said exchange. Thanks again.

____________________________________________________

To all...

Rosemary was kind enough to send this information along to me, and I wanted

to share it with the group, as it certainly seems there is a great deal of

overlap with CP, and the two are clearly related. There may well be others

in this group who suffer from Porpyria and aren't even aware of it. I didn't

realize that one of my problems was Gastroparesis until Karyn shared her ex

perience with it some six months after I had been a member of this group, and

after I did extensive research and mentioned it to my PCP, we did a quick

test and sure enough - and the Dx of that disease has meant a great deal of

progress in the treatment of my CP... Hence, I am forwarding this along in

hopes that others, if in fact they might suffer from this malady, might get a

flicker of interest and do some research and possibly learn something about

their own disease process.

Once again, THANK YOU Rosemary for the detailed information, and I wish you

all good things in your journey to deal with/live with/battle this terribly

illness - may God lead you, heal you, direct you, bring you peace and comfort

with this and all that ails you.

Thank you again for sharing of yourself so deeply.

Peace & Love,

Terry in KC

-----------------

Forwarded Message:

Subj: Re: Re: Question for the women...sorry guys

Date: Monday, July 29, 2002 6:26:01 PM

From: sassyroe1@...

To: RogueKC@...

From: sassyroe1@... (Roe Campisi)

To: RogueKC@...

Hi Terry, thank you for the email and all the info you sent with it..

Well, Porphyria is not a well known disease unfourtunalty in the US and it is

much more misdiagnosed than CP, but here is the story on how we found out my

mom had it which is quite extroidenary..When I was pregnant with my first son

at 17 years old, my mom was on her deathbed in the hospital..she was in

aganizing pain, her enzymes for her pancreas were high, her liver enzymes

were high, but really all her blood tests were so out of wack, and no one

knew what she had, so they couldnt help her. Since her pancreas was showing

an acute attack they had her npo, she didnt eat for weeks, and she was not

getting any better. A nun was her doctor and she talked with all of us

telling us my mom was passing away...Turns out 3 days later, my mom was up in

bed and talking and starting to eat..I couldnt believe it. I asked the nun

doctor, what happened?? She said she was praying every day for my mom , and

the night she told us my mom was dying, a vision came to her that night on

how to treat my mom, but not what my mom has, so being a nun, she went to the

hospital and started giving my mom HEME, in her iv among other things, and

then went to the library when my mom was getting better to look up the

disease that requires heme...and it was porphyria..they did the tests on her,

and sure enuff her urine contained high concentration of Porphrins. No Doctor

at the time ever heard of it, the info she got was from South Africa, and

England...Then when I started getting sick after my 2nd child, I was tested

and sure enough I have it too. It is a genetic blood disease that could

affect you in any way it wants..everyone who has it , has it different..we

have the acute intermittant porphyria. It causes us to have elevated enzymes

in liver and pancreas...but my cp was brought on since I was a child, and it

is just so damaged now from all the acute attacks through all the years, and

still ...we have also neurilogical problems, mine right now, is just

depression, and some psycotic episodes that both are controlled with

medication. But just as CP gets worse, so does Porphyria..my mom now has

strokes and epileptic seizures, she has diabities from cp ..she is not well

at all...it is 50% that your kids will get it and I have 3, so I look for

signs all the time. Hopefully by the time they get sick if they do, they

might have some kind of cure or at least something to stop the progression of

both diseases. I pray. Still, when I tell dr's I have Porpyria, either they

ask me what that is, or they ask , oh, you cant go in the sun...OH MY GOD!!

One form of poyphria gives you leisions on your skin when you go in the

sun..there are SO many different kinds of porpyria, and doctors are just not

aware of it..The best website for info is from South Africa...My computer

crashed and I just got a new one now, I am still searching for it, when I

find it I will send it to the group. I had so much info on my other hard

drive!!! I was not sure if I should post all this on the board, but if you

feel they would be interested in this story, please you can post it on the

board ok? You can email me anytime..and if you have a specific question dont

hesitate to email me, or IM me, my yahoo id is also Sassyroe1...Hope to see

you in chat later..i will try to go on once my little one goes to sleep.

What is your story? I just joined the board 5 days ago, I havent had a

computer in over a year so it is real nice to be back on haha..so lost

without it! Talk to you soon!

Rosemary

Love You very much!

Rosemary

[Guest guest]

Terry,

I think you meant to forward something that Rosemary sent

you on in this email, but it didn't come through. Remember,

attachments get stripped from the mail. You need to either

foward without attachments or copy and paste the text into

a new memo.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

Terry,

I think you meant to forward something that Rosemary sent

you on in this email, but it didn't come through. Remember,

attachments get stripped from the mail. You need to either

foward without attachments or copy and paste the text into

a new memo.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International