Re: Introduction

[Guest guest]

Welcome Kim,

Don't know what or how sever you're Mom was at first, but 8 years isn't all that

long. Usually we go by when they have a diagnosis. The reason for that is

minor things can go on for a long time before the situation becomes more

obvious.

Now I am sure my Mom had problems long before I paid enough attention. My Mom

was much older than yours so I just kept thinking " she is getting older. "

It took lots of problems before I could finally realize Mom was in deep trouble.

She lived 12 hours away from me and she could hold a conversation on the phone

and she pretended a lot, I was to learn later.

She has been gone since '02 but she lived with me for 3 years and the last year

in a nh.

Hugs, and do let us know about meds. They are most of many problems or were

for my Mom.

Donna R

Caregiver for Mom for 3

years and 4th year in a nh.

(In MI)

She was almost 89 when she

died in '02. No dx other

than mine.

Introduction

Hello to all,

�

I'm new to the group and wanted to introduce myself.� My mother, 63,�has

recently been diagnosed with LBD, a change from her diagnosis of " probable

Pick's Disease " just a few years ago.� My father is her primary

caregiver.��We are all�trying to wrap our heads around this new diagnosis

and what it�means for Mom.��She seems to be in the mid to later stages of

this disease.� It's been a long road since Mom began with symptoms

(hallucinations) 8 years ago.�

��

I'm glad to have found this group.�

�

Thank you,

Kim in NJ

[Guest guest]

Dear Kim,

Welcome to the group. I must tell you that it has been an absolute Godsend to

me.  I got so much information about LBD, and it also made me feel that I was

not alone.  When I had an urgent question, I'd post in, and within a very short

period of time, the wonderful people who belong to this group posted answers. 

You have come to the right place! 

Sending you strength,

Helene in NY

 

 

 

Subject: Introduction

To: LBDcaregivers

Date: Sunday, March 22, 2009, 6:06 PM

Hello to all,

 

I'm new to the group and wanted to introduce myself.  My mother, 63, has

recently been diagnosed with LBD, a change from her diagnosis of " probable

Pick's Disease " just a few years ago.  My father is her primary caregiver.  We

are all trying to wrap our heads around this new diagnosis and what it means for

Mom.  She seems to be in the mid to later stages of this disease.  It's been a

long road since Mom began with symptoms (hallucinations) 8 years ago. 

  

I'm glad to have found this group. 

 

Thank you,

Kim in NJ

[Guest guest]

Kim,

Welcome to the group! You will find lots of support, understanding and wisdom

here. My mother-in-law is 81 and was diagnosed about 6 months ago, although we

also suspect mid to later stages at this point. She lived alone until August,

and is now almost helpless and requires 24 hour care. We attributed a lot of

little things to aging and her personality, so we missed the early clues.

What part of NJ are you in? We're in Aberdeen, northern Monmouth county.

Nice to " meet " you!

>

>

>

>

>

> Hello to all,

>  

> I'm new to the group and wanted to introduce myself.  My mother, 63, has

recently been diagnosed with LBD, a change from her diagnosis of " probable

Pick's Disease " just a few years ago.  My father is her primary caregiver.  We

are all trying to wrap our heads around this new diagnosis and what it means for

Mom.  She seems to be in the mid to later stages of this disease.  It's been a

long road since Mom began with symptoms (hallucinations) 8 years ago. 

>   

> I'm glad to have found this group. 

>  

> Thank you,

> Kim in NJ

>

>

>

>

>

[Guest guest]

Hi, Kim! Another WELCOME to our group! As you have already realized, we all

think this group is great in helping us get information about this horrible

disease, in giving us support and love and understanding, in contibuting to keep

our sanity in this horrendous roller-coaster, and in comforting us when we lose

our LO. Ask your questions, vent your frustrations, cry on our shoulders -that's

the reason we keep in touch.

Hugs,

Raquel Asay

[Guest guest]

Hi Sabriel2012,

I think you are swimming in progesterone, it is locked in your fat and

strangling you. No wonder estrogen doesn't help! In the Women's Health

Study, women on estrogen alone (horse pee) had a slightly less (but not

significant) chance of BC. Those on E + the synthetic progestin had an

increase in the incidence of BC. The increase was only slightly higher but

significant. We still don't know if bioidentical progestereone is any

different than synthetic progestin in the effect it has on breasts. Why

anyone would push the progesterone cream, I don't know.

I took horse pee and Provera for aoubt 10 years. When I got off, I tried

various things. Once I took triest and 100 mg compounded progesterone/day.

When the bleeding started, the pharmacist upped it to 200 mg/d. I bled

constantly then. At the end of five months, I was beleeding constantly and

had estradiol = <15. I wasn't assimilating any of that triest.

I then went on Estrogel and oral Prometrium. Both are bioidentical. I've

been on them for about ten years. I got two positive biopseys last

October/November. The fact there were two sites of DCIS (contained within

the duct), my option for lumpectomy and radiation was gone. II wasn't about

to go through this again so I opted for a bilateral mastectomy with

reconstruction tissue taken from my abdomen. I got a tummy tuck in the

process. Pathology revealed the two spots of DCIS that we know about. It

also revealed a tiny 1.7 mm invasive tumor in the same breast. The other

breast, where nothing was seen on mammogram, reaveled a 1.3 cm DCIS. None

of them were thought to have gone anywhere. There was nothing left to

radiate and no chemo was recommended. I see an oncologist every three

months. My lumph node surgery was uneventful.

After the surgery, I made the decision to go back on Estrogel but to cycle

oral Prometrium. My blood sugar was rising on daily use and it has come

down nicely since I stopped the daily dose of progesterone. Next month, I'm

going to tyy Premetrium used vavginally.

I discussed this with my oncologist. My chance of relapse is 3% with

estradiol use, 2% without it, and 38% if I'd had a lumpectomy and radiation.

Losing my breasts is not fun but I've adjusted. While I am mostly numb, I

still in my head have some feeling.

I use Ortho Gynest estriol cream that I get the Masters Marketing. I use it

on my face.

August to December is indeed a very long weight. That's why American breast

cancer statistics are so much better in the U.S. than Canada.

I'm saying all this assuming you have a uterus. If you don't dump it all

except the Estrogel!

Val

Introduction

Hi Everybody,

I am new to this group. Let me introduce myself. Age 61, had breast cancer

and lumpectomy +lymphnode dissection on the left side in 2007. Just

recently, I was diagnosed with recurrence at the old surgery site. This is

not to discourage anybody but to present the whole picture of me. The good

news is that the tumor is small in size. Now I have to decide if I want

lumpectomy with radiation or mastectomy no radiation. Also need to think

about strategies for future HRT or other non-hormonal solutions for hormonal

imbalance. Sounds funny.

Past history of HRT:

On the first sign of menopause, I started premarin for 25 days a month and

medoxyprogesterone for 11 days in the second half of the cycle. I took 5-6

days break at the end of each month when I would have a withdrawal bleeding.

This went on from 2002 until the diagnosis with breast cancer. I know, I

should not have taken synthetic hormones but my family physician did not

know or did not want to prescribe bio-identicals. I could not find another

doctor and because I tolerated the pills relatively well, I thought

everything was fine. Anyway, after the diagnosis, on the advice of doctors,

I had to stop HRT abruptly. 6 week later, menopausal symptoms came as a

tornado eating me up physically and mentally. I begged for help but no

doctor was willing to interfere with this so called " natural process " . This

is what they emphasized, " natural " . Yes it was as natural as death for me. I

tried all natural remedies under the sun available that time with no

results. Perhaps Naturopathic doc

tors are more flexible but they cannot write prescription in Ontario,

Canada. I read all books, Dr. Uzzi Reiss, Dr. Schwarzbein, T.S Wiley,

Suzanne Somers, Canadian author Lorna Vanderhaeghe and others. I had a

general idea what I should do to lessen symptoms, but no doctor was

available.

In a few weeks after this initiation of menopause, I found a doctor who

prescribed Bio-identical Progesterone cream, 20 mg BID. At the beginning,

it was good. Hot flashes were gone and I was able to sleep better. However,

in three month I had everything again: brainfog, fatigue, low mood except

for hot flashes.

I was running around for help for no avail. Nobody wanted to give me

estrogen, however, one doctor increased the progesterone dose to 30 mg bid.

It felt better for 2 weeks, than, from there I started to go down.

Osteoporosis, brainfog, tinnitus, depression, fatigue got worse, I started

to lose hair big time, blood sugar started to increase accompanied with

weight gain.

I was on progesterone roughly a little over 2 years and a high dose of it

without estrogen.

As I complained about my symptoms, the doctor who gave me the higher dose of

progesterone, now gave me the Estradot patch, lowest dose, and told me to

continue with progesterone every day. It did not work. I got bloated, had

cramps and retained water followed by considerable gain in weight. I

stopped Estradot and ordered Life-Flo topical Estriol on line. It slowed me

down, made me dizzy and lethargic. I stopped within a few days. November

2010, my old MD prescribed 0.1 mg Bi-est to take it with the 30 mg

progesterone, both bid. There was little positive change which dissipated

fast. Then, he increased Bi-est to 0.2 mg bid. No improvement whatsoever. In

the meantime, I had appointments with a few doctors specializing in BHRT.

Every one of them refused to prescribe me anything, period. Felt like

written off.

I wanted to try the WP, however, this gynaecologist, 200 km away from

Toronto, said NO and mentioned Estrogel. She did not prescribe it for me but

I went back to my old MD with the idea.

I started Estrogel 0.06 % with the usual dose of progesterone in May 2011.

In June 2011, I started cycling progesterone, taking it only in the second

half of cycle in double dose. I had problems and tried to adjust the doses.

I had to rely on how I feel because my BHRT doctor was not monitoring me. He

sent me for a couple of blood tests at the beginning, but not later. I was

not able to find the magic spot. I do not think I ever achieved hormonal

balance. I ordered a Saliva test in October 2011 which came out not so bad.

They said every hormone was within acceptable limits. Breast tenderness was

present in left breast and latter it developed into inflammation.

Inflammation always started in the progesterone phase.

An ultrasound in August 2011 showed the irregular tissue at the old surgery

site. I was booked for biopsy in December, quite a waiting time is it not?

I am still trying to taper off hormones. It is hard. I cannot go off

completely before the surgery and take on the sleepless nights with flashes,

bear the escalating tinnitus and brainfog.

For the future, I want to try Estro-Rhythm. I would really appreciate some

input from anybody in this group who tried this product developed by Bent

Formby. Otherwise, I am clueless what strategy to follow to avoid what I

went through in the last 4 years.

I doubt I would be able to find a reasonable doctor now with the new

scenario. If there were a " do-it-yourself- safely " group, I would join it

right away.

What I learned is that my breasts are very sensitive to estradiol especially

in the lutheal phase; however, 1-1.5 mg /day of this hormone is not enough

for my brain or for improving the quality of my life.

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

click here for our webpage http://rhythmicliving.com/

**The group conversation is informational in nature and is not intended as

medical advice.**

[Guest guest]

In my very HUMBLE opinion..you have had WAAAY too much Progesterone, and no where near enough 17-beta-Estradiol. That's why you're getting the water retention, brain-fog, hot flashes, etc. If you've read all the books that you've stated, you know that REAL 17-beta-Estradiol will not harm you even with your medical history(in the books they have referenced studies done). You are Estrogen depleted..and if you've been a "good girl" and taken the Dr's Tamoxifen, then you REALLY have NO Estrogen as that drugs and drugs like it wipe out Estrogen receptors..period. Your receptors will need LOTS of 17-beta-Estradiol to "wake-up" those receptors..hopefully you will not have taken Tamoxifen and they will wake up.Terri To: rhythmicliving Sent: Monday, January 16, 2012 8:04 PM Subject: Introduction

Hi Everybody,

I am new to this group. Let me introduce myself. Age 61, had breast cancer and lumpectomy +lymphnode dissection on the left side in 2007. Just recently, I was diagnosed with recurrence at the old surgery site. This is not to discourage anybody but to present the whole picture of me. The good news is that the tumor is small in size. Now I have to decide if I want lumpectomy with radiation or mastectomy no radiation. Also need to think about strategies for future HRT or other non-hormonal solutions for hormonal imbalance. Sounds funny.

Past history of HRT:

On the first sign of menopause, I started premarin for 25 days a month and medoxyprogesterone for 11 days in the second half of the cycle. I took 5-6 days break at the end of each month when I would have a withdrawal bleeding. This went on from 2002 until the diagnosis with breast cancer. I know, I should not have taken synthetic hormones but my family physician did not know or did not want to prescribe bio-identicals. I could not find another doctor and because I tolerated the pills relatively well, I thought everything was fine. Anyway, after the diagnosis, on the advice of doctors, I had to stop HRT abruptly. 6 week later, menopausal symptoms came as a tornado eating me up physically and mentally. I begged for help but no doctor was willing to interfere with this so called "natural process". This is what they emphasized, "natural". Yes it was as natural as death for me. I tried all natural remedies under the sun available that time with no results.

Perhaps Naturopathic doctors are more flexible but they cannot write prescription in Ontario, Canada. I read all books, Dr. Uzzi Reiss, Dr. Schwarzbein, T.S Wiley, Suzanne Somers, Canadian author Lorna Vanderhaeghe and others. I had a general idea what I should do to lessen symptoms, but no doctor was available.

In a few weeks after this initiation of menopause, I found a doctor who prescribed Bio-identical Progesterone cream, 20 mg BID. At the beginning, it was good. Hot flashes were gone and I was able to sleep better. However, in three month I had everything again: brainfog, fatigue, low mood except for hot flashes.

I was running around for help for no avail. Nobody wanted to give me estrogen, however, one doctor increased the progesterone dose to 30 mg bid. It felt better for 2 weeks, than, from there I started to go down. Osteoporosis, brainfog, tinnitus, depression, fatigue got worse, I started to lose hair big time, blood sugar started to increase accompanied with weight gain.

I was on progesterone roughly a little over 2 years and a high dose of it without estrogen.

As I complained about my symptoms, the doctor who gave me the higher dose of progesterone, now gave me the Estradot patch, lowest dose, and told me to continue with progesterone every day. It did not work. I got bloated, had cramps and retained water followed by considerable gain in weight. I stopped Estradot and ordered Life-Flo topical Estriol on line. It slowed me down, made me dizzy and lethargic. I stopped within a few days. November 2010, my old MD prescribed 0.1 mg Bi-est to take it with the 30 mg progesterone, both bid. There was little positive change which dissipated fast. Then, he increased Bi-est to 0.2 mg bid. No improvement whatsoever. In the meantime, I had appointments with a few doctors specializing in BHRT. Every one of them refused to prescribe me anything, period. Felt like written off.

I wanted to try the WP, however, this gynaecologist, 200 km away from Toronto, said NO and mentioned Estrogel. She did not prescribe it for me but I went back to my old MD with the idea.

I started Estrogel 0.06 % with the usual dose of progesterone in May 2011. In June 2011, I started cycling progesterone, taking it only in the second half of cycle in double dose. I had problems and tried to adjust the doses. I had to rely on how I feel because my BHRT doctor was not monitoring me. He sent me for a couple of blood tests at the beginning, but not later. I was not able to find the magic spot. I do not think I ever achieved hormonal balance. I ordered a Saliva test in October 2011 which came out not so bad. They said every hormone was within acceptable limits. Breast tenderness was present in left breast and latter it developed into inflammation. Inflammation always started in the progesterone phase.

An ultrasound in August 2011 showed the irregular tissue at the old surgery site. I was booked for biopsy in December, quite a waiting time is it not?

I am still trying to taper off hormones. It is hard. I cannot go off completely before the surgery and take on the sleepless nights with flashes, bear the escalating tinnitus and brainfog.

For the future, I want to try Estro-Rhythm. I would really appreciate some input from anybody in this group who tried this product developed by Bent Formby. Otherwise, I am clueless what strategy to follow to avoid what I went through in the last 4 years.

I doubt I would be able to find a reasonable doctor now with the new scenario. If there were a "do-it-yourself- safely" group, I would join it right away.

What I learned is that my breasts are very sensitive to estradiol especially in the lutheal phase; however, 1-1.5 mg /day of this hormone is not enough for my brain or for improving the quality of my life.

[Guest guest]

BTW, Sabriel2012, if I had a breast cancer return, I would run, not walk, to the nearest mastectomy doctor.  A lumpectomy + radiation has a 38% chance of return (assuming it was estrogen positive) with the use of estrogen.  The chance of return with estrogen is 3% in my case; 2% without estrogen use.  I'm willing to take that chance but I would not have taken the 38% chance. The WHI study actually found a slight decrease in BC incidence with synthetic estrogen and a slight (but significant) increase when a synthetic progestin was combined.  No one knows if bioidentical progesterone acts the same way as a progestin on breast tissue.  Was your cancer ER/PR? Terri, could you cite some of those studies that REAL 17-beta-Estradiol will not harm even with a cancer history?  I was not aware that any controlled studies have been done. Val From: rhythmicliving [mailto:rhythmicliving ] On Behalf Of Terri CemailIn my very HUMBLE opinion..you have had WAAAY too much Progesterone, and no where near enough 17-beta-Estradiol. That's why you're getting the water retention, brain-fog, hot flashes, etc. If you've read all the books that you've stated, you know that REAL 17-beta-Estradiol will not harm you even with your medical history(in the books they have referenced studies done). You are Estrogen depleted..and if you've been a " good girl " and taken the Dr's Tamoxifen, then you REALLY have NO Estrogen as that drugs and drugs like it wipe out Estrogen receptors..period. Your receptors will need LOTS of 17-beta-Estradiol to " wake-up " those receptors..hopefully you will not have taken Tamoxifen and they will wake up.Terri Hi Everybody,I am new to this group. Let me introduce myself. Age 61, had breast cancer and lumpectomy +lymphnode dissection on the left side in 2007. Just recently, I was diagnosed with recurrence at the old surgery site. This is not to discourage anybody but to present the whole picture of me. The good news is that the tumor is small in size. Now I have to decide if I want lumpectomy with radiation or mastectomy no radiation. Also need to think about strategies for future HRT or other non-hormonal solutions for hormonal imbalance. Sounds funny.Past history of HRT:On the first sign of menopause, I started premarin for 25 days a month and medoxyprogesterone for 11 days in the second half of the cycle. I took 5-6 days break at the end of each month when I would have a withdrawal bleeding. This went on from 2002 until the diagnosis with breast cancer. I know, I should not have taken synthetic hormones but my family physician did not know or did not want to prescribe bio-identicals. I could not find another doctor and because I tolerated the pills relatively well, I thought everything was fine. Anyway, after the diagnosis, on the advice of doctors, I had to stop HRT abruptly. 6 week later, menopausal symptoms came as a tornado eating me up physically and mentally. I begged for help but no doctor was willing to interfere with this so called " natural process " . This is what they emphasized, " natural " . Yes it was as natural as death for me. I tried all natural remedies under the sun available that time with no results. Perhaps Naturopathic doctors are more flexible but they cannot write prescription in Ontario, Canada. I read all books, Dr. Uzzi Reiss, Dr. Schwarzbein, T.S Wiley, Suzanne Somers, Canadian author Lorna Vanderhaeghe and others. I had a general idea what I should do to lessen symptoms, but no doctor was available.In a few weeks after this initiation of menopause, I found a doctor who prescribed Bio-identical Progesterone cream, 20 mg BID. At the beginning, it was good. Hot flashes were gone and I was able to sleep better. However, in three month I had everything again: brainfog, fatigue, low mood except for hot flashes.I was running around for help for no avail. Nobody wanted to give me estrogen, however, one doctor increased the progesterone dose to 30 mg bid. It felt better for 2 weeks, than, from there I started to go down. Osteoporosis, brainfog, tinnitus, depression, fatigue got worse, I started to lose hair big time, blood sugar started to increase accompanied with weight gain.I was on progesterone roughly a little over 2 years and a high dose of it without estrogen.As I complained about my symptoms, the doctor who gave me the higher dose of progesterone, now gave me the Estradot patch, lowest dose, and told me to continue with progesterone every day. It did not work. I got bloated, had cramps and retained water followed by considerable gain in weight. I stopped Estradot and ordered Life-Flo topical Estriol on line. It slowed me down, made me dizzy and lethargic. I stopped within a few days. November 2010, my old MD prescribed 0.1 mg Bi-est to take it with the 30 mg progesterone, both bid. There was little positive change which dissipated fast. Then, he increased Bi-est to 0.2 mg bid. No improvement whatsoever. In the meantime, I had appointments with a few doctors specializing in BHRT. Every one of them refused to prescribe me anything, period. Felt like written off.I wanted to try the WP, however, this gynaecologist, 200 km away from Toronto, said NO and mentioned Estrogel. She did not prescribe it for me but I went back to my old MD with the idea.I started Estrogel 0.06 % with the usual dose of progesterone in May 2011. In June 2011, I started cycling progesterone, taking it only in the second half of cycle in double dose. I had problems and tried to adjust the doses. I had to rely on how I feel because my BHRT doctor was not monitoring me. He sent me for a couple of blood tests at the beginning, but not later. I was not able to find the magic spot. I do not think I ever achieved hormonal balance. I ordered a Saliva test in October 2011 which came out not so bad. They said every hormone was within acceptable limits. Breast tenderness was present in left breast and latter it developed into inflammation. Inflammation always started in the progesterone phase.An ultrasound in August 2011 showed the irregular tissue at the old surgery site. I was booked for biopsy in December, quite a waiting time is it not?I am still trying to taper off hormones. It is hard. I cannot go off completely before the surgery and take on the sleepless nights with flashes, bear the escalating tinnitus and brainfog.For the future, I want to try Estro-Rhythm. I would really appreciate some input from anybody in this group who tried this product developed by Bent Formby. Otherwise, I am clueless what strategy to follow to avoid what I went through in the last 4 years.I doubt I would be able to find a reasonable doctor now with the new scenario. If there were a " do-it-yourself- safely " group, I would join it right away.What I learned is that my breasts are very sensitive to estradiol especially in the lutheal phase; however, 1-1.5 mg /day of this hormone is not enough for my brain or for improving the quality of my life.

[Guest guest]

Cherie,

If Scranton Pa. is a reasonable distance for you to travel You are welcome to share our Doug Coil Machine. We chose the Doug Coil for it’s power and ability to get to the bugs no matter where they are.

Terry

[Guest guest]

Thanks Terry! Wish we were closer. Where did you buy yours from?

Cherie

>

> Cherie,

>

> If Scranton Pa. is a reasonable distance for you to travel You are welcome to

share our Doug Coil Machine. We chose the Doug Coil for it’s power and ability

to get to the bugs no matter where they are.

>

> Terry

>

[Guest guest]

All of you seem to be wonderfully caring people! We do not live on the east

coast otherwise I would be totally interested. Where did you buy your coil

machine from ?

Thanks,

Cherie

> >

> > Thanks . We do not live close to that area. But I appreciate your

kindness!

> >

> > Cherie

> >

> > Sent from my HTC on the Now Network from Sprint!

> >

> > ----- Reply message -----

> > From: " Steel " <psteel5@>

> > Date: Tue, Feb 28, 2012 19:53

> > Subject: Introduction

> > To: " Lyme_and_Rife " <Lyme_and_Rife >

> >

>

[Guest guest]

In the Midwest

Cherie

> > >

> > > Thanks . We do not live close to that area. But I appreciate your

kindness!

> > >

> > > Cherie

> > >

> > > Sent from my HTC on the Now Network from Sprint!

> > >

> > > ----- Reply message -----

> > > From: " Steel " <psteel5@>

> > > Date: Tue, Feb 28, 2012 19:53

> > > Subject: Introduction

> > > To: " Lyme_and_Rife " <Lyme_and_Rife >

> > >

> >

>