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Hi Camilla! Welcome to the group! (Sorry so late!)

Hope you enjoy it here!

My hubby is fluent in German, though he is from France but grew up in Alsace.

Are you close to there at all?

We live in California, but go back to France as often as we can. Flying is a

HUGE pain though so I don't look forward to that part! hehe

Just wanted to say hi and welcome! oh and hope you get your internet back

soon!

(I thought i saw in another post that you just moved and were still getting

settled)

Ca-mil-la@... wrote:

Hello to all of you!

My name is Camilla from Germany and I just joined this list. I was happy to find

it as I don't know anybody with SMA and am eager to know how other people around

the world live (with it).

First of all I will tell you a bit about me. My english is not very good ~ sorry

for this, but I hope it is not too bad. I learned it at school and this is a

looong time ago. :-)

OK, I am 34 years old, SMA type 2, female, single with cat. I have a younger

brother who will be father in 6 month. He, his wife, me parents and me are very

close.

For some years I live on my own and 4 times a day a Mobile Care Service comes to

take care about my needs.

I work as a chairman's secretary (4 hours a day) in a big non-profit

organisation which cares about persons with special needs. We have 12

integrative kindergartens, several flats for handicaped and / or old persons, a

children's hospice and much more. Working there is great, I love it, allthough

it is very hard for my muscles very often. Things I can not do are done by my

boss or the colleagues. This works fine.

When I am home I love reading thriller, listening to audiobooks on my iPod,

watching tv, meeting with friends and family, go shopping and watch people while

sipping a mug of coffee and I talk on the phone for hours and hours. One big

hobby is cooking and if I could as I would like to do, I would be in the kitchen

all day. So I come up with recipes and my helpers prepare them for me.

9 years ago I had a bad car accident on the way from work home. The driver only

squeezed his thumb. Several times I broke my arms, legs, hip and even my neck,

witch was just diagnosed 5 days later although I told the doctors it hurts. They

said I never felt pain, as I never fell on my knees as a child (I am in an

electric chair since I was 5), so I can not decide whether it is a broken neck

or just a whiplash. Unfortunately I was right but very lucky not to be

paralyzed. This would be bitter fate! :-) I was ill for 18 month, 12 month in

bed. It was not very funny and I lost a lot of my muscular power which I can not

regain.

I think this is enough for the beginning. It is getting dark outside, I will

swich on the lights, grap my cat and the phone and call my family. You know,

talk for hours and hours .... ;-)

I am eager to get to know all of you!

Best wishes,

Camilla

______________________________________________________________

Verschicken Sie romantische, coole und witzige Bilder per SMS!

Jetzt bei WEB.DE FreeMail: http://f.web.de/?mc=021193

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  • 2 months later...

I have noticed. I have also noticed that it didn't USED to be close to

the WW plan. In the early '90s when I did WW it was heavy on empty,

high glycemic, carbs like rice cakes. Now they seem to push a plan

very close to, or at least workable with, BFL.

That said, I'm not sure why you'd want to go pay $10 a week, weather

you go to the meeting or not, when you can do this for free. If you

feel the need for a meeting type atmousphere find your local chapter

of T.O.N.S.

But, if WW's meeting format really works for you, go for it. What

ever works to make you strong healthy and lean, right?

Barbara

Barbara

>

> Hi, I'm a newbie to this group. I'm very interested in utilizing

BFL

> to get into great shape. I've noticed that the diet part of BFL for

> women is *very* close to The Core Plan on Weight Watchers.

>

> I'm curious to know if anyone else here has noticed the same or is

> trying to work both programs at once.

>

> Thanks in advance.

>

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Guest guest

Rogena,

I too am new to this group and am just starting to understand the

frustrations and challenges that go with this diagnosis. But know

this, these women are wonderfully supportive and helpful. They have

answered about 1000 posts by me in the last few days, never making

me feel like I was being ridiculous. As they keep telling me, you

are not alone! Welcome!

Fritze

mom to Ana...13mo old, IgG def and who knows what else...

>

> Hi, my name is Rogena and I am new to this group. I am a devoted

> mother to four wonderful boys (well, five if you include my

husband,

> lol). Our 3 year old, Cole, was diagnosed in October 2005 with

> Selective IgA with a subclass IgG deficiency. He had his baseline

> bloodwork done then and we do a follow up bloodtest in April. At

> that time the doctors are also going to test him for Celiac

> disease. I had him back to the ENT yesterday and we decided to

give

> him a second set of ear tubes and give him an adenoidectomy in

three

> weeks. While this whole PID thing is new to us, I am becoming

> increasingly amazed at how little the pediatricians seem to

> understand about this disorder. I seem to have to be my childs

own

> advocate. I have never been one to rush to the doctor for

childhood

> illnesses, but I find myself fighting to get my son the help he

> needs. The pediatrician we have is great, but she tends to treat

> him more as your typical healthy toddler, not one with a

> deficiency. I have pretty much had to request all the tests he

has

> had thus far. My biggest medical partner has been the ENT. He

> actually is the one who questioned the PID and got the ball

rolling.

> I have not found a local support group, but am excited to find

this

> group...which I wouldn't have found if it hadn't been for

> www.midf.org. THANKS!

>

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Guest guest

Welcome Rogena! You must be a soul sister of mine because I ALWAYS tell

people I have 3 boys, 4 if you count my hubby! LOL I have two boys with

Shwachman-Diamond Syndrome (SDS) and low immunoglobulins. The doctors just

keep their diagnosis as SDS and they get replacement IG therapy. We just

switch from IVIG to SCIG (Subcutaneous IG) Here is a link to our family

website, if you are interested www.shwachman.50megs.com

<http://www.shwachman.50megs.com/> You'll find a lot of wonderful folks

here!

~Pattie~

" It is easy to take liberty for granted when you have never had it taken

from you. " ~ Dick Cheney

_____

From: [mailto: ] On Behalf Of

nogirlsallboys

Sent: Wednesday, March 01, 2006 8:08 AM

Subject: Hello!

Hi, my name is Rogena and I am new to this group.

_____

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Guest guest

Pattie: I checked out your website...KUDOS! It is beautiful, as

are your three sons. God bless you and yours in all you do-- and

grant special grace towards those boys!

-Rogena

>

> Welcome Rogena! You must be a soul sister of mine because I

ALWAYS tell

> people I have 3 boys, 4 if you count my hubby! LOL I have two

boys with

> Shwachman-Diamond Syndrome (SDS) and low immunoglobulins. The

doctors just

> keep their diagnosis as SDS and they get replacement IG therapy.

We just

> switch from IVIG to SCIG (Subcutaneous IG) Here is a link to our

family

> website, if you are interested www.shwachman.50megs.com

> <http://www.shwachman.50megs.com/> You'll find a lot of

wonderful folks

> here!

>

>

>

> ~Pattie~

>

> " It is easy to take liberty for granted when you have never had it

taken

> from you. " ~ Dick Cheney

>

>

>

> _____

>

> From: [mailto: ] On

Behalf Of

> nogirlsallboys

> Sent: Wednesday, March 01, 2006 8:08 AM

>

> Subject: Hello!

>

>

>

> Hi, my name is Rogena and I am new to this group.

>

>

>

>

>

>

> _____

>

>

>

>

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  • 4 months later...
Guest guest

Hey Dawn, Im new here, but im sure there is someone that could talk

with you. Just know that youre in my prayers as well as every one else

here.

>

> I am a woman who was born with Spina Bifida. I just found this group.

> If anyone would like to talk about their experiences I'd be happy to

> listen and share mine as well.

>

> Dawn

>

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  • 1 month later...

Welcome Olly,

Nice to have you aboard. You sound quite grown up for your 16 yrs- I have a 15

yr old daughter- It will be great to have your youthful perspective on all the

issues. Welcome!

Peace to You,

Beth

Hello!

Hiya,

My name is Olly Pool from London, England.

I'm 16 years old with SMA type 2. Also have had the spinal fusion

operation.

Basically anyone who wants to chat about abosoultely anything, please

go ahead!

Because i'm new and don't know how how these things work. lol

I'm always on msn messenger...please add me on

mchotwheels@...!

Olly

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>

> Welcome Olly,

> Nice to have you aboard. You sound quite grown up for your 16 yrs-

I have a 15 yr old daughter- It will be great to have your

youthful perspective on all the issues. Welcome!

> Peace to You,

> Beth

> Hello!

>

>

> Hiya,

>

> My name is Olly Pool from London, England.

>

> I'm 16 years old with SMA type 2. Also have had the spinal

fusion

> operation.

>

> Basically anyone who wants to chat about abosoultely anything,

please

> go ahead!

>

> Because i'm new and don't know how how these things work. lol

>

> I'm always on msn messenger...please add me on

> mchotwheels@...!

>

> Olly

>

>

>

>

>

>

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Hey Olly, check my other message to the group, LOL. I didn't see this until

i scrolled up, haha. Add me to messenger if you like, it's

KatyaFan@.... I'm 23, most of my friends with SMA are around

my age. LOL. I have a few friends in your neck of the world. And I don't

have SMA, I am deaf though.

On 8/27/06, Olly <ollypool@...> wrote:

>

>

> >

> > Welcome Olly,

> > Nice to have you aboard. You sound quite grown up for your 16 yrs-

> I have a 15 yr old daughter- It will be great to have your

> youthful perspective on all the issues. Welcome!

> > Peace to You,

> > Beth

> > Hello!

> >

> >

> > Hiya,

> >

> > My name is Olly Pool from London, England.

> >

> > I'm 16 years old with SMA type 2. Also have had the spinal

> fusion

> > operation.

> >

> > Basically anyone who wants to chat about abosoultely anything,

> please

> > go ahead!

> >

> > Because i'm new and don't know how how these things work. lol

> >

> > I'm always on msn messenger...please add me on

> > mchotwheels@...!

>

> >

> > Olly

> >

> >

> >

> >

> >

> >

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Hi, welcome!!

Olly <ollypool@...> wrote:

Hiya,

My name is Olly Pool from London, England.

I'm 16 years old with SMA type 2. Also have had the spinal fusion

operation.

Basically anyone who wants to chat about abosoultely anything, please

go ahead!

Because i'm new and don't know how how these things work. lol

I'm always on msn messenger...please add me on

mchotwheels@...!

Olly

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

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

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You've joined an awesome group , YOU CAN SOOOO DO THIS!!

Welcome aboard!!

Darcy

On 8/29/06, claudiaynesto <claudiaynesto@...> wrote:

All,My name is and I just joined the group! (((Wave))) I have decided that I am tired of being over weight.... so I'm gonna do something about it.... I've always been active doing some form of sport mainly running (sporadically) - With my first pregnancy I gained +65lbs my son weighted a healthy 10.4 lbs with my second I gained 45 lbs and she weighted 9.5lbs... I want to be fit.... I want to look

great...not just good but great.... so I decided the time is now. In June of last year I had weighted in at 206... I am 5'6 " - I ran and did a spinning class....I stopped it all a few months back. Today I weight 175lbs give or take although I know all about nutrition, forms, exercises, routines ...yaddi...yaddi...yadda... I haven't applied it.This time I am fed up and really want to change the way I look.I started running again, doing the 1998 TAE-BO basic and Pilates 10 minute solution. In December we will be going to Puerto Rico to visit family - I have to look good, no if's, and's, but's or rolls ;-) - My target weight is 150lbs (temp) eventually I wanna get to 135 with nice muscle tone - I get discouraged easily so I'm looking for motivation....Whoa...OOOOOkay..... I said it..... I feel better now.... :-))

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In a message dated 8/29/2006 9:10:56 P.M. US Eastern Standard Time, claudiaynesto@... writes:

I get discouraged easily so I'm looking for motivation....

You'll get plenty of motivation here. Welcome to the group.

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hi claudia and welcome. i haven't been posting much with school and my daughter(she is autistic) but i found your post pretty inspiring. b/c as you stated you know what you need to do but you just have to do it, and congrats and taking that first step. the way you put things is right and wish many had that same attitude. i think a goal weight of 150 by december is a reasonable and doable goal and i hope we can help every step of the way. i don't have the 10 min solution pilates tape but i do have the tae-bo and that is a great place to start. i just love kickboxing and running(even though i haven't been able to run much lately), i find the best forms of losing weight and gaining some endurance is from these two cardio workouts. i also do weights and pilates and yoga. to keep my strength and flexibilty. the fact that the abs are looking tight is just the bonus LOL, a very nice bonus.hope to hear more about your workouts kassia

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

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hi claudia!! welcome to the group, it is nice to meet you here!

running, taebo and pilates sounds great. you will probably want to

add some strength training into your routine after you have got that

stuff down.

i am thrilled that you have decided to work on your fitness level

again. you can do it!!! we are all here to help you through it,

so please post often.

:*carolyn.

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It's great to meet you, . I'm --also known as the token

male in this predominantly female group. You'll find this is a great

group to help you get motivated. Be sure to post some pics in the

photo section so we can see your before and after results.

>

> All,

>

> My name is and I just joined the group! (((Wave))) I have

> decided that I am tired of being over weight.... so I'm gonna do

> something about it.... I've always been active doing some form of

> sport mainly running (sporadically) - With my first pregnancy I gained

> +65lbs my son weighted a healthy 10.4 lbs with my second I gained 45

> lbs and she weighted 9.5lbs... I want to be fit.... I want to look

> great...not just good but great.... so I decided the time is now. In

> June of last year I had weighted in at 206... I am 5'6 " - I ran and

> did a spinning class....I stopped it all a few months back.

>

> Today I weight 175lbs give or take although I know all about

> nutrition, forms, exercises, routines ...yaddi...yaddi...yadda... I

> haven't applied it.

>

> This time I am fed up and really want to change the way I look.

> I started running again, doing the 1998 TAE-BO basic and Pilates 10

> minute solution. In December we will be going to Puerto Rico to visit

> family - I have to look good, no if's, and's, but's or rolls ;-) - My

> target weight is 150lbs (temp) eventually I wanna get to 135 with nice

> muscle tone - I get discouraged easily so I'm looking for

> motivation....

>

> Whoa...OOOOOkay..... I said it..... I f

eel better now.... :-))

>

>

>

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  • 4 weeks later...

>hi jane i have conns too am from the uk i have had 15 years of hell

not noing wot was rong with me . doctors were hopeless . it stared

with a fit . and the got worse as time went my by i was sick shacky

on edge , sweating , pain on my kidneys , back pain, musicel pain i

cud go on for days lol love wendy

> Hello everyone!

>

> My name is Jane, i've been looking on the internet for information on

> Conns Syndrome and have finally found a support group, a very

> exclusive one considering there's only a few members!

>

> I had Conns Syndrome confirmed about a month ago, after blood tests

> etc.

>

> Im 22 and in the RAF at RAF Marham, Norfolk, in the UK. The only

> reason i found out ive got this problem is because i wanted to go on

> a parachute course and when i went for the medical i set the alarm

> off on the blood pressure monitor! I subsequently have not been

> allowed to jump out of an aeroplane........ probably for the best!!

>

> Due to being in the RAF things are moving along reasonably fast

> (fingers crossed!), its only been about 4 months since i went for my

> medical, im seeing my consultant on wednesday so hopefully i'll find

> out more then. I want this sorted as soon as possible as i have been

> medically downgraded and in the RAF that means no detachments to

> sunny desert climates and not much chance of promotion, and im pretty

> eager to do both!

>

> Last week i had to wear a 24 tape heart monitor that was a right pain

> in the arse! made sleeping uncomfortable, should get the results from

> that and an ultrasound and xray on wednesday.

>

> I read in one of the emails that someone has suffered from

> breathlessness. I had to have time off of work a fortnight ago

> because i was feeling out of breath without doing anything and also

> felt dizzy. The doctor had no idea why i felt breathless, i was

> wondering if any of you knew why i have felt like this?

>

> I am very lucky at the moment to have other things to think about,

> ive got a wonderful boyfriend, Doug, who is really understanding when

> i feel down and get upset, and were moving out of the barrack block

> on friday to rent a house together. So interior decorating and

> buying furniture is occupying me for the moment!

>

> I would really like to hear from anyone about how they are coping and

> how their treatment is going, so please email me.

>

> Jane

> : )

>

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Hi Jane

As to duration of tx it all depends on what is causing your Conns and what type

you have.

Have you had a cat scan of your adrenals?Low potasssium happens when there is

too much aldosterone, low potassium makes you breathless,weak and sick.

I hope you are watching your potassium level and eat K rich foods.

I have a adenoma (tumor) in my left adrenal gland which is over producing,

aldosterone,DHEA,

testosterone,

norepinehrine,

normetanephrine,

Dopamine.

I am in the process of discovery the discovery is raising my blood pressure. 6

out of whack hormones should mean something but to which side could be doing

this to me its still a mystery. And then there is Adrenal vein sampling to make

sure of right and left side differences. I am on my way to see a Doc in San

Francisco General hosp that Dr. Grim in here is sending me to. No one in

Sacramento at the University has a clue to my problem. I even saw the Professor

yesterday who wrote the Chapter on Endocrinology Hypertension in Basic and

Clinical Endo tex book. Even he sent me to SF General to the same dr. I just

dont understand it I am not that different just sick. The good new is the Dr. in

here who is wonderful and been looking after people like us for 40 years is

moving 1 hour in a half from me from Wisconson to California.

I cant believe some one your age has this. ita

>

> Hello everyone!

>

> My name is Jane, i've been looking on the internet for information on

> Conns Syndrome and have finally found a support group, a very

> exclusive one considering there's only a few members!

>

> I had Conns Syndrome confirmed about a month ago, after blood tests

> etc.

>

> Im 22 and in the RAF at RAF Marham, Norfolk, in the UK. The only

> reason i found out ive got this problem is because i wanted to go on

> a parachute course and when i went for the medical i set the alarm

> off on the blood pressure monitor! I subsequently have not been

> allowed to jump out of an aeroplane........ probably for the best!!

>

> Due to being in the RAF things are moving along reasonably fast

> (fingers crossed!), its only been about 4 months since i went for my

> medical, im seeing my consultant on wednesday so hopefully i'll find

> out more then. I want this sorted as soon as possible as i have been

> medically downgraded and in the RAF that means no detachments to

> sunny desert climates and not much chance of promotion, and im pretty

> eager to do both!

>

> Last week i had to wear a 24 tape heart monitor that was a right pain

> in the arse! made sleeping uncomfortable, should get the results from

> that and an ultrasound and xray on wednesday.

>

> I read in one of the emails that someone has suffered from

> breathlessness. I had to have time off of work a fortnight ago

> because i was feeling out of breath without doing anything and also

> felt dizzy. The doctor had no idea why i felt breathless, i was

> wondering if any of you knew why i have felt like this?

>

> I am very lucky at the moment to have other things to think about,

> ive got a wonderful boyfriend, Doug, who is really understanding when

> i feel down and get upset, and were moving out of the barrack block

> on friday to rent a house together. So interior decorating and

> buying furniture is occupying me for the moment!

>

> I would really like to hear from anyone about how they are coping and

> how their treatment is going, so please email me.

>

> Jane

> : )

>

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Please send us all your labs numbers when you get them and your Hx of low K. I a young women I would first suspect renal artery problems as causing severe high blood pressure and low K. Renin will help separate the causes.

Keep us posted.

May your pressure be low!

C.E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

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  • 3 weeks later...

In a message dated 10/17/2006 5:22:20 PM Central Daylight Time, nikkicowan@... writes:

palpitations?

I have palpatations, I dont know what they are associated with except I happen to have a low pottassium level..my son also has had them since age 10 or so and he is not +...so who knows?? Wecome..geri

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I did some googling around and there

seemed to be a connection with the chest pain and/or palps with C.

However, there are many reasons for them, as well. But I have, in the

last year, ended up in the emergency room more than once with heavy chest

pain. The blood tests do not show enzymes related to heart damage.

My doc says she thinks that it is blocked arteries. Nitro does help

the pain. But she wants to run many thousands of dollars worth of tests

and that just cannot happen right now. ly, I think if I had

clogged arteries causing that much pain I would have passed over by now

with the big one. But there seems to be repeatable circumstances. I

do not tolerate heat (and I live in Coastal Texas), so on my feet and in the

heat and if I am dehydrated I get ill that if I don’t change my

surroundings seem to advance to the chest pain. Those nerves that serve

that area are closely bundled and there might be lots of reasons for my

trouble, but I am chasing down some liver connections.

Nikki

In a message dated 10/17/2006 5:22:20 PM

Central Daylight Time, nikkicowan@... writes:

palpitations?

I have palpatations, I dont know what

they are associated with except I happen to have a low pottassium level..my son

also has had them since age 10 or so and he is not +...so who knows??

Wecome..geri

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I have heart problems , but there is no clear evidence linking it to my hep c . My brother came home from Viet Nam with hep non a non b and died within 5 yrs , that was back in 1980 . I still hurt allot about his death , he was only 28 when he died and he passed on Christmas day . Anway welcome to the group , I am the medical researcher and if you have any questions please don't hesitate to post .

Hello!

Hello!

My name is Nikki and my husband and I have been positive for @35 years. We are not going to do tx, but are doing alternative things. DH is going to have some testing done-he had a stroke last May and now is being treated by VA. We have been self employed for most of that time with no health ins. I did have a viral load done about 5 years ago and it was about 500,000. My brother passed away from this two years ago. I have recently changed what I am doing for my C and went from feeling pretty bad most of the time to feeling really good, so it must be helping.

Does anyone here suffer from chest pain and palpitations?

Nikki

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Hi Nikki, What are you doing instead of Conventional treatment? No chest pains here, but my nerves are sure shot.. Blessings, Sheena Nikki Cowan <nikkicowan@...> wrote: Hello! My name is Nikki and my husband and I have been positive for @35 years. We are not going to do tx, but are doing alternative things. DH is going to have some

testing done-he had a stroke last May and now is being treated by VA. We have been self employed for most of that time with no health ins. I did have a viral load done about 5 years ago and it was about 500,000. My brother passed away from this two years ago. I have recently changed what I am doing for my C and went from feeling pretty bad most of the time to feeling really good, so it must be helping. Does anyone here suffer from chest pain and palpitations? Nikki

Stay in the know. Pulse on the new .com. Check it out.

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A cheap test to have done would be your cholesterol , if it's high then you may have some arteriole sclerosis blocking your heart arteries and causing chest pain .

RE: Hello!

I did some googling around and there seemed to be a connection with the chest pain and/or palps with C. However, there are many reasons for them, as well. But I have, in the last year, ended up in the emergency room more than once with heavy chest pain. The blood tests do not show enzymes related to heart damage. My doc says she thinks that it is blocked arteries. Nitro does help the pain. But she wants to run many thousands of dollars worth of tests and that just cannot happen right now. ly, I think if I had clogged arteries causing that much pain I would have passed over by now with the big one. But there seems to be repeatable circumstances. I do not tolerate heat (and I live in Coastal Texas), so on my feet and in the heat and if I am dehydrated I get ill that if I don’t change my surroundings seem to advance to the chest pain. Those nerves that serve that area are closely bundled and there might be lots of reasons for my trouble, but I am chasing down some liver connections.

Nikki

In a message dated 10/17/2006 5:22:20 PM Central Daylight Time, nikkicowansbcglobal (DOT) net writes:

palpitations?

I have palpatations, I dont know what they are associated with except I happen to have a low pottassium level..my son also has had them since age 10 or so and he is not +...so who knows?? Wecome..geri

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I am doing retention enemas with my

morning urine, colloidal silver and a teaspoon of DMSO.

When I first heard about urine therapy I was totally revolted, but being the

curious person that I am and highly motivated from my brother’s very sad

and drawn out and painful passing. I

read Martha Christy’s “Your Own Perfect Medicine” and I gave

it a try. It has been amazing for

me and my life is back on track, I feel really good.

Nikki

Hi Nikki,

What are you doing instead of Conventional treatment?

No chest pains here, but my nerves are sure shot..

Blessings,

Sheena

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Nikki

I would not ignore this and assume it is liver. We can think everything is associated with liver and it isn't. Many of us will die from something other than Hep C.

My brother for instance, 55, complete athlete, never drank or smoked, had the same pain and problems with heat and dehydration. Found out he had a 90% blockage in on artery and 50% in 2 others. We couldn't believe it, nor could he because of his healthy lifestyle. He was playing a tennis match and the heat and dehydration got to him for the last time and he decided he really needed to have this checked out.

Anyway it is your life, but those chest pains could be heart attacks. An angiogram might be in order, at the very least a stress test.

I'm not trying to diagnose you, I guess my point is we need to be careful not to blame everything on liver. We have a lot of other systems going on in our bodies.

Thanks for listening

Ginger

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