New member

[Guest guest]

I mentioned a while ago that my bird (Spinifex parrot) has seemed alarmed by my proximity,

since I got my ICD a few months ago. Also, he's never been fond of leaving his cage/flying,

but he used to be able at least to cross the room to his friends' cage successfully. But with

'the new me' in the room, he seemingly can't even fly in the right direction and keeps ending

up on the floor, from where he can't take off and so is in all sorts of trouble and fright.

We all know that ICDs are susceptible to electro-magnetic 'noise', and my theory is that our

devices produce a field themselves. Birds are known to sense magnetic fields - they navigate

by the Earth's - indeed, it has recently been theorised that at least some species can 'see' them.

Maybe I now look to our bird(s) as if I have a huge chrysanthemum permanently fixed to my chest!

I'd bet companion animals such as dogs 'see' electricity/magnetism too. Some humans claim to see

the 'auras' of people and/or other animals. I reckon animals do, which explains why dogs especially,

and cats too, react positively or negatively to certain people, for no reason that is obvious to us.

An ICD will produce a disruption in the aura, and I'm sure the force patterns change when the device

is 'doing something', hence your dog will know when this is occurring.

Leonie.

From: andreaschaerf@...Date: Thu, 17 Dec 2009 13:14:00 -0600Subject: new member

One item to bring up- my dog likes to rest her head on the ICD. i think she may hear something. She seems to know when I am having arrythmias and pace. She stays alert then with her head one it. Has anyone had anything like this?

Add other email accounts to Hotmail in 3 easy steps. Find out how.

[Guest guest]

Hello, Femi.

I have not been diagnosed as having A., but i belive that i do. I have only

regurgitated my food once, and have only lost about 5 pounds. I have been able

to get those horrible stuck bites down by many unusual manipulations of my

abdomen with my hands usings pressure at certain places and continuing until the

food " suddenly " passes. Walking around also helps me get the food to pass fairly

quickly.

I am sorry for your terrible weight loss. Both times i was pregnant i had

morning sickness(24 hours a day)and food adversions that i lost lots of weight

the first 4 months. It was a terrible, awful feeling.

I hope you get the help you need soon.

God bless.

Christy

>

> hello all

>

> i am a 28 yr old female from london, uk.

>

> after finding this group yesterday, and reading through just a handful of

messages, i'm not sure whether i feel happy or sad. it's heartening to find

other people that understand what i'm going through, but it breaks my heart that

so many of us, and those we love, have to go through this. it has been so hard

to cope with this a woman in her 20s, i can't imagine how hard it is for those

only 12 & 13 years old.

>

> i have been suffering from achalasia since early 2007, and was only diagnosed

in september of last year. after being diagnosed by a GI specialist as having

acid reflux in december 2007, i was later ignored by my doctor when i told them

the omeprazole was not working. in fact, she flat-out denied my request to be

sent back to the hospital. i tried all kinds of alternative therapies, including

acupuncture, iridology and colonic hydrotherapy in the hopes that i would have a

breakthrough; but after more than a year of struggling, i waved the white flag

and went back to my doctor insisting that i be sent back for more tests. i had a

healthy bmi before this began and at my lowest weight i have been what the bmi

classifies as 'anorexic'.

>

> i had a botox injection in november, which i thought worked, however i think

what i felt was just the brief relief we enjoy after an endoscopy. i was able to

eat without regurgitation for one week, and then it was back to how it was

before. at my last check up, in december 2009, my doctor said that it was time

to consider dilatation or the heller myotomy, however i asked that he first

investigate my small intestine to confirm there are no blockages or strictures.

i am currently awaiting the results of a barium follow-through which will

confirm or deny this.

>

> i was wondering if i am the only sufferer who is angry with western medicine

for filing achalasia under 'no cause, no cure'. i feel like the treatment

options only address the symptoms, and not the root cause. i am still open to

finding the cure for this, discovering what really makes this happen. if we know

that our bodies do not try to harm us, only help us, then what is the greater

ill that our bodies are protecting us from?

>

> i have been on the brink of suicide with this condition, and i am so tired of

fighting, but i can not bring myself to give up. there are things that happen in

my body that the doctor can not explain. for example, sometimes i am struggling

with food and i push on a point to the left of my navel and everything relaxes,

allowing my food to go down. why does this happen? he doesn't know and he is not

that interested. but i am, because i live with this everyday.

>

> am i the only voice in the crowd shouting that the doctors have missed

something? am i the only sufferer or loved one still trying to figure this

condition out?

>

> thank you all so much for sharing your stories. i have found real comfort

here. i wish everyone well.

>

>

> femi

>

[Guest guest]

Dear Femi,

I've discovered I had Achalasia last year (although it started four years before

that) and have felt the same as you do but never put it in those words. In my

own case I have been looking for the root cause so that I can heal. I've tried

many alternative remedies and am still hopeful. I have not gotten worse and

seem better as far as I can tell, but I will get another barium swallow this

month.

In my own case, stress seems to have brought the Achalasia on, but I think there

is more to it. I just started taking valerian and L-trytophan to relax me along

with homepathic remedies which I started in November. Unfortunately, I do not

have all the answers. \

Hang in there and become educated about Achalasia and your options.

Eva

From Chicagoland

>

> i was wondering if i am the only sufferer who is angry with western medicine

for filing achalasia under 'no cause, no cure'. i feel like the treatment

options only address the symptoms, and not the root cause. i am still open to

finding the cure for this, discovering what really makes this happen. if we know

that our bodies do not try to harm us, only help us, then what is the greater

ill that our bodies are protecting us from?

>

> femi

[Guest guest]

Hello and welcome to our family.  Where did you have all your treatments at? 

I wnt to see Mr. Maynard in Oxford.  If you have any questions please feel

free to ask.  There are several members in the group that live in the UK and

are very willing to help and listen to you.  Ann Higgs is a blessing to me

and I am sure she will be a blessing to you.

Your friend

 <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

________________________________

From: " femimartin@... " <femi.martin@...>

achalasia

Sent: Wed, February 3, 2010 7:15:46 PM

Subject: new member

 

hello all

i am a 28 yr old female from london, uk.

after finding this group yesterday, and reading through just a handful of

messages, i'm not sure whether i feel happy or sad. it's heartening to find

other people that understand what i'm going through, but it breaks my heart that

so many of us, and those we love, have to go through this. it has been so hard

to cope with this a woman in her 20s, i can't imagine how hard it is for those

only 12 & 13 years old.

i have been suffering from achalasia since early 2007, and was only diagnosed in

september of last year. after being diagnosed by a GI specialist as having acid

reflux in december 2007, i was later ignored by my doctor when i told them the

omeprazole was not working. in fact, she flat-out denied my request to be sent

back to the hospital. i tried all kinds of alternative therapies, including

acupuncture, iridology and colonic hydrotherapy in the hopes that i would have a

breakthrough; but after more than a year of struggling, i waved the white flag

and went back to my doctor insisting that i be sent back for more tests. i had a

healthy bmi before this began and at my lowest weight i have been what the bmi

classifies as 'anorexic'.

i had a botox injection in november, which i thought worked, however i think

what i felt was just the brief relief we enjoy after an endoscopy. i was able to

eat without regurgitation for one week, and then it was back to how it was

before. at my last check up, in december 2009, my doctor said that it was time

to consider dilatation or the heller myotomy, however i asked that he first

investigate my small intestine to confirm there are no blockages or strictures.

i am currently awaiting the results of a barium follow-through which will

confirm or deny this.

i was wondering if i am the only sufferer who is angry with western medicine for

filing achalasia under 'no cause, no cure'. i feel like the treatment options

only address the symptoms, and not the root cause. i am still open to finding

the cure for this, discovering what really makes this happen. if we know that

our bodies do not try to harm us, only help us, then what is the greater ill

that our bodies are protecting us from?

i have been on the brink of suicide with this condition, and i am so tired of

fighting, but i can not bring myself to give up. there are things that happen in

my body that the doctor can not explain. for example, sometimes i am struggling

with food and i push on a point to the left of my navel and everything relaxes,

allowing my food to go down. why does this happen? he doesn't know and he is not

that interested. but i am, because i live with this everyday.

am i the only voice in the crowd shouting that the doctors have missed

something? am i the only sufferer or loved one still trying to figure this

condition out?

thank you all so much for sharing your stories. i have found real comfort here.

i wish everyone well.

femi

[Guest guest]

HI Nichole! Many hospitals have a charity type plan set up for people who do not

have insurance or who can not pay all bills that they have.Contact a few local

hospitals around you and tell them your situation to see if you can get help.

I will however tell you that if you have A your really gonna need

insurance........ as test,procedures, and surgery(if u choose) really adds up.

You will also need a specialist which may require you to travel.Where do you

live?

Start with getting the manometry done if you can and then take things one step

at a time.You have found the best place for help and support though! I have a

son almost 17 with A if your diagnosed and wanna talk to someone close to your

age let me know. We both are also on facebook Tonia and in

Roanoke VA

>

> Hi, my name is . I am 19 years old and the GI doctor that I have been

seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do not

have insurance and I can not find anyone that will do the test without it. I

NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this started), im

tired all the time, and I always feel like im going to pass out! I can't eat

anything and liquids are not even staying down... If anyone has any advice for

me, I will gladly take it. I am so scared that I wont get the help that I need.

>

[Guest guest]

Hi tonia! well I've tried the charity thing, and It hasnt helped. you cant get

charity unless you have a bill from that hospital, and I cant get a bill without

the test being done, and i cant get the test done without insurance. I can not

afford insurance! at least i cant find any that i can afford... and I am from

Pontiac, IL

> >

> > Hi, my name is . I am 19 years old and the GI doctor that I have been

seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do not

have insurance and I can not find anyone that will do the test without it. I

NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this started), im

tired all the time, and I always feel like im going to pass out! I can't eat

anything and liquids are not even staying down... If anyone has any advice for

me, I will gladly take it. I am so scared that I wont get the help that I need.

> >

>

[Guest guest]

Rayme it kills my insides every time someone says they fill sorry for the

young people who get this terrible disease. My son is 17 and has had A for

a couple of years. He is doing fine now but I guess this disease can

raise it's ugly head anytime it wants. Just hard to be the mom and hear so

many say such scary things about my son's and 's future. I pray for

everyone on here young and old who has this disease.

In a message dated 2/8/2010 5:46:43 P.M. Central Standard Time,

ray_me_99@... writes:

Hi

Wonder if Medicad would cover it.

_http://www.cms.http://www.cms.http://www.c_

(http://www.cms.hhs.gov/medicaideligibility/)

I also lost 35 lbs. Now I have three Ensure's " plus " a day, 1000 calories,

soup, chocolate, ice cream, milk shakes, thin crackers

covered with lots of real butter, caffeine, coffee, fat and a COLD

CAN OF REAL COKE. You can get up to 2000 calories real easy. If

you get these calories in you, you will feel much better.

While you are waiting on the results and deciding what to do, try

what works for me. Keep off the solids, until the liquids go down!

You have to learn how to regurgiate,Make sure it does not get into

the windpipe or lungs. Coke will opem the LES and bring up the

solids. I have found that 250 mg of Magnesium seems to open the

LES and make the bowel work better, may take a few days and the CO2

in Coke also opens the LES.

I am so sorry for the young people like you, it is a terrible

disease, hold on for awhile until you get the results.

rayme OC CA 79 old as hell but holding off on an operation last 4 years.

>

> Hi, my name is . I am 19 years old and the GI doctor that I have

been seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do

not have insurance and I can not find anyone that will do the test without

it. I NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this

started), im tired all the time, and I always feel like im going to pass out! I

can't eat anything and liquids are not even staying down... If anyone has

any advice for me, I will gladly take it. I am so scared that I wont get

the help that I need.

>

[Guest guest]

>

>

>

Have you tried starting with your county's free clinic? Our county has dr's

set up to treat and do surgery on people who can not afford it. You have to

start with them though, even though you have seen your own doctor they have

you start " fresh " with the doctor's that have signed up to help. Usually if

you don't qualify for the free clinic there is still others that will see

you at a greatly reduced cost. Good luck!

>

>

[Guest guest]

Hello ,

Where are you located at?  I can call you or you can call me if you would

like that. 

That test is important for finding out if you have the disease or not.

in Georgia.

 <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

________________________________

From: colabear08 <colabear08@...>

achalasia

Sent: Mon, February 8, 2010 1:59:34 AM

Subject: new member

 

Hi, my name is . I am 19 years old and the GI doctor that I have been

seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do not

have insurance and I can not find anyone that will do the test without it. I

NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this started), im

tired all the time, and I always feel like im going to pass out! I can't eat

anything and liquids are not even staying down... If anyone has any advice for

me, I will gladly take it. I am so scared that I wont get the help that I need.

[Guest guest]

Hi

Wonder if Medicad would cover it.

http://www.cms.hhs.gov/medicaideligibility/

I also lost 35 lbs. Now I have three Ensure's " plus " a day, 1000 calories, soup,

chocolate, ice cream, milk shakes, thin crackers

covered with lots of real butter, caffeine, coffee, fat and a COLD

CAN OF REAL COKE. You can get up to 2000 calories real easy. If

you get these calories in you, you will feel much better.

While you are waiting on the results and deciding what to do, try

what works for me. Keep off the solids, until the liquids go down!

You have to learn how to regurgiate,Make sure it does not get into

the windpipe or lungs. Coke will opem the LES and bring up the

solids. I have found that 250 mg of Magnesium seems to open the

LES and make the bowel work better, may take a few days and the CO2

in Coke also opens the LES.

I am so sorry for the young people like you, it is a terrible

disease, hold on for awhile until you get the results.

rayme OC CA 79 old as hell but holding off on an operation last 4 years.

>

> Hi, my name is . I am 19 years old and the GI doctor that I have been

seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do not

have insurance and I can not find anyone that will do the test without it. I

NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this started), im

tired all the time, and I always feel like im going to pass out! I can't eat

anything and liquids are not even staying down... If anyone has any advice for

me, I will gladly take it. I am so scared that I wont get the help that I need.

>

[Guest guest]

Hi ,

I'm Mark I'm 21 from Philippines, I was diagnosed for having A when I was 16

(March 2004), I share the same feeling with you, the same scenario that you are

experiencing right now. I can still remember those days I cant eat anything, i

feels like the foods/liquids stuck somewhere in my E. Having no options at all

makes me feel like I'm about to pass out just like what you feel. I lived in not

well progressive country and I don't thinks doctor's in a small clinic here in

our country would understand my situation. I have live my life with fear and

panic. We don't have that much money to afford even simple check-ups.

But then I didn't loose hope, I tried to look for some charity doctors that

could endorsed me for cheap test and medication. After all, the they told me 2

options, Balloon Dialation, Myotomy. Then I chosen Dialation over myotomy

because we really cant afford medication for the surgery.

But God lead me in for choosing these option, My first Dialation was done the

same year and for more than 5years my E still works pretty well. Though

sometimes heart burn and minor chest pain occur, I still feel blessed because I

have learned to be tough and more tougher than anybody else. Being part of this

Group makes me feel that I'm not alone.

Sorry, I'm not that good in English language, hope you understand what I have

wrote in here.

You can check my facebook mark lester dela Pena (Philippines) my email add is

mark_delapena09@... . I'll be in touch whenever you need someone to

talk to.

Regards and Prayers,

Mark

________________________________

From: colabear08 <colabear08@...>

achalasia

Sent: Monday, February 8, 2010 2:59:34

Subject: new member

Hi, my name is . I am 19 years old and the GI doctor that I have been

seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do not

have insurance and I can not find anyone that will do the test without it. I

NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this started), im

tired all the time, and I always feel like im going to pass out! I can't eat

anything and liquids are not even staying down... If anyone has any advice for

me, I will gladly take it. I am so scared that I wont get the help that I need.

Feel safer online. Upgrade to the new, safer Internet Explorer 8 optimized

for to put your mind at peace. It & #39;s free. Get IE8 here!

http://downloads./sg/internetexplorer/

[Guest guest]

I am going through the free clinic... however the tests can not be performed in

this county, so I am not covered. And my doctor has talked to the doctors at the

hospital that i can get the tests done at and they will not do it

>

> >

> >

> >

> Have you tried starting with your county's free clinic? Our county has dr's

> set up to treat and do surgery on people who can not afford it. You have to

> start with them though, even though you have seen your own doctor they have

> you start " fresh " with the doctor's that have signed up to help. Usually if

> you don't qualify for the free clinic there is still others that will see

> you at a greatly reduced cost. Good luck!

>

> >

> >

>

>

>

[Guest guest]

I tried applying for that, but i was denied because i am not pregnent or

disabled... and im pretty sure i have become a pro at regurgitating things. i

dont like coke, however, i have found that sometimes Dr Pepper does the trick. I

too try to drink insure plus! my mom found that for me. and how would i get

magnesium? ill have to try that out

> >

> > Hi, my name is . I am 19 years old and the GI doctor that I have been

seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do not

have insurance and I can not find anyone that will do the test without it. I

NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this started), im

tired all the time, and I always feel like im going to pass out! I can't eat

anything and liquids are not even staying down... If anyone has any advice for

me, I will gladly take it. I am so scared that I wont get the help that I need.

> >

>

[Guest guest]

I live in Illinois

>

> Hello ,

>

> Where are you located at?  I can call you or you can call me if you would

like that. 

> That test is important for finding out if you have the disease or not.

>

>

> in Georgia.

>  <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia

</FONT><IMG src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

>

>

>

>

> ________________________________

> From: colabear08 <colabear08@...>

> achalasia

> Sent: Mon, February 8, 2010 1:59:34 AM

> Subject: new member

>

>  

> Hi, my name is . I am 19 years old and the GI doctor that I have been

seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do not

have insurance and I can not find anyone that will do the test without it. I

NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this started), im

tired all the time, and I always feel like im going to pass out! I can't eat

anything and liquids are not even staying down... If anyone has any advice for

me, I will gladly take it. I am so scared that I wont get the help that I need.

>

>

>

>

>

>

>

>

[Guest guest]

Follow the chain up to the best surgeon/gi combo and call them. They can make

things happen down below. Email or voice mail the surgeons and gi's directly,

their office staff tries to filter calls like that.

Obviously, we don't know your skills or background, but this may be the

motivating factor to do whatever it takes to get a job and skills that lead to

the path of benefits. Achalasia is kind of like having a kid, if you stretch

your imagination, and have a sense of humor, you have to take care of it.

If you like, to to www.pubmed.com, and put in the major teaching center closest

to you, and search that along w/ achalasia and those that have published the

most will appear. Email and call them! Yes, they will call back. Maybe don't

start out w/ asking for freebies, but ask about general treatment. They will

call you back! The higher up they are, the more time they have and the more

they can make things happen! Probably they like to flex their muscles and show

off their status by helping people like you also. You are much more interesting

to them, than us oldies.

Sandy

> >

> > >

> > >

> > >

> > Have you tried starting with your county's free clinic? Our county has dr's

> > set up to treat and do surgery on people who can not afford it. You have to

> > start with them though, even though you have seen your own doctor they have

> > you start " fresh " with the doctor's that have signed up to help. Usually if

> > you don't qualify for the free clinic there is still others that will see

> > you at a greatly reduced cost. Good luck!

> >

> > >

> > >

> >

> >

> >

[Guest guest]

Hi,

Can you tell me...is a specialist for A a GI doctor or is there some other

specialist that handles A?

Thanks

> > >

> > > Hi, my name is . I am 19 years old and the GI doctor that I have

been seeing believes that I have achalasia. She says that I need to have an

Esoghageal Manometry done before a surgery can be arranged. However, I do not

have insurance and I can not find anyone that will do the test without it. I

NEED HELP!!! I weigh about 97lbs( use to weigh 135lbs before this started), im

tired all the time, and I always feel like im going to pass out! I can't eat

anything and liquids are not even staying down... If anyone has any advice for

me, I will gladly take it. I am so scared that I wont get the help that I need.

> > >

> >

>

[Guest guest]

I think that both Chicago University Hospital and Northwestern are teaching

hospitals. Dr. Patti is at Chicago University Hospital and I hear that he is

the best. I forget the name of the surgeon at Northwestern, but I will get it

for you.

There are ways you can get help.

Eva (Chicagoland)

> > >

> > > >

> > > >

> > > >

> > > Have you tried starting with your county's free clinic? Our county has

dr's

> > > set up to treat and do surgery on people who can not afford it. You have

to

> > > start with them though, even though you have seen your own doctor they

have

> > > you start " fresh " with the doctor's that have signed up to help. Usually

if

> > > you don't qualify for the free clinic there is still others that will see

> > > you at a greatly reduced cost. Good luck!

> > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

Becca,

~Hello and welcome!! you came to a great place lots of info here very knowledgeable!! I have 3 boys and I'm due with my 4th in a couple of weeks!! I have learned SO MUCH from this group!! I'm glad you want to research and make an informed decision. When are you due? I am working on my "Birth Plan" right now it's my first and I'm very excited!!

Nice to meet you

~Anne

Hello everyone,I am , sahm to 2 daughers with another on the way. Wish I had found you all in 05 when my first daughter was born. Oldest daughter is vaxed to 2yrs, she is almost 5. Youngest only has a few. Thinking of not vaxing at all with my 3rd daughter. I am just a person that likes to get the facts right and not be pushed into anything lol.Thanks,Anchorage, AK

[Guest guest]

Welcome, ! You have come to the right place for info. It's good to hear you are questioning vaccines. That is more than I did before something went wrong.

Winnie New memberVaccinations > Hello everyone,> I am , sahm to 2 daughers with another on the way. Wish > I had found you all in 05 when my first daughter was born. > Oldest daughter is vaxed to 2yrs, she is almost 5. Youngest only > has a few. Thinking of not vaxing at all with my 3rd daughter. > I am just a person that likes to get the facts right and not be > pushed into anything lol.> > Thanks,> > Anchorage, AK> >

[Guest guest]

Hi Vicky,

Most doctors will not know what to look for when they diagnose ME/CFIDS/CFS.

Here is a good starting point for you. This site has links to the Canadian

definition. There is a lot of info here and it can be overwhelming but it is a

good site to get you started. Feel free to ask questions here.

http://www.ahummingbirdsguide.com/

I was diagnosed by a rheumatologist when I became ill. Unfortunately, I have

had the diagnosis confirmed multiple times. I see alot of integrative doctors

who are more familiar with this illness.

There is a chart on that website on the differences between MS and ME (CFIDS or

CFS).

There are some other good sites but don't want to overwhelm you.

I would like to ask what ranges you or your docs are using for " Normal " . These

values have changed recently and most mainstream doctors use a very large range.

I would consider a TSH of 2.0 to be abnormal (requiring thyroid

supplementation). The other ranges are important as well as it is the whole

picture. The Free T3 and Free T4 ranges should be looked at as well.

HTH,

Marti

>

>

>

> Hello,

>

> I am a new member and have suffered severe Chronic Fatigue for the past and

half to 4 years. I have not gotten a diagnosis of CFS as all the Drs I see

simply don't know and can not tell me anything.

>

> I have had MRI's of the brain to test for Multiple Sclerosis, as I have a lot

of symptoms related to MS but I don't have MS or at least they dont' think so.

>

> I do have an Autoimmune disease that almost cost my life before it was finally

diagnosed. I have Grave's disease and had lost down to 82 pounds, by that time,

they recommended Radioidoine to complete destroy my Thyroid gland, I could feel

my energy leaving me and within 3 months I was put on Thyroid replacement when

the labs indicated that my gland was no longer functioning. Well, I have the

Thyroid level in the normal range and have gained back my weight, but I have

severe fatigue and symptoms that are so debilitaing that I can't hardly walk at

times and feel so exhausted that I have to rest before I go out and if I do go

out, it's not for long, I am completley worn out.

>

> I shouldn't feel this way with having had the thyroid destroyed as I am on

replacement hormones in the normal range and I know many other people who have

had the same thing done who are working but the question that is always in my

mind is: I didn't feel this way before my throid stopped working and it seems

strange that I have felt THIS FATIGUED since it stopped despite replacement

hormones, or is a cooincidence?

>

> Well, how do you know for sure that you have CFS? How can you prove it?

>

>

> I did have similar feeling several years ago when I had a terribly high viral

titer of Epstein Barr Virus.

>

>

> Any advice, all I can do is one thing at a time and not even able to work at

all. Everything is a struggle and I have so many sumptoms that I won't bore

everyone with them but only to say that I am exhausted all of the time.

>

>

>

> Thanks again

>

>

> Vicky

>

[Guest guest]

hi vicky. perhaps you should contact VIP diagnostics and order the XMRV serology

test.

 

good luck

sue

From: vk4sign <sound4heaven@...>

Subject: New Member

Received: Saturday, July 10, 2010, 3:39 PM

 

Hello,

I am a new member and have suffered severe Chronic Fatigue for the past and half

to 4 years. I have not gotten a diagnosis of CFS as all the Drs I see simply

don't know and can not tell me anything.

I have had MRI's of the brain to test for Multiple Sclerosis, as I have a lot of

symptoms related to MS but I don't have MS or at least they dont' think so.

I do have an Autoimmune disease that almost cost my life before it was finally

diagnosed. I have Grave's disease and had lost down to 82 pounds, by that time,

they recommended Radioidoine to complete destroy my Thyroid gland, I could feel

my energy leaving me and within 3 months I was put on Thyroid replacement when

the labs indicated that my gland was no longer functioning. Well, I have the

Thyroid level in the normal range and have gained back my weight, but I have

severe fatigue and symptoms that are so debilitaing that I can't hardly walk at

times and feel so exhausted that I have to rest before I go out and if I do go

out, it's not for long, I am completley worn out.

I shouldn't feel this way with having had the thyroid destroyed as I am on

replacement hormones in the normal range and I know many other people who have

had the same thing done who are working but the question that is always in my

mind is: I didn't feel this way before my throid stopped working and it seems

strange that I have felt THIS FATIGUED since it stopped despite replacement

hormones, or is a cooincidence?

Well, how do you know for sure that you have CFS? How can you prove it?

I did have similar feeling several years ago when I had a terribly high viral

titer of Epstein Barr Virus.

Any advice, all I can do is one thing at a time and not even able to work at

all. Everything is a struggle and I have so many sumptoms that I won't bore

everyone with them but only to say that I am exhausted all of the time.

Thanks again

Vicky

[Guest guest]

Having had an email exchange with the director of VIPdx labs recently, I just

want to make sure that everyone understands that the serological test is not

'better' or more accurate than the cultured one. They developed the serology

test in addition to the culture test not instead of. You will always be able to

choose either one or both.

Neither the serology or the culture test can give you a 100% 'none detected'

outcome. It will always be possible the virus will surface all of a sudden

because it has the ability to hide itself so perfectly or the person might

undergo treatment at that moment which makes it also difficult to detect it.

People who had a 'none detected' result with a prior culture test will be

offered a re-test somewhere this summer using serology.

On the other hand, a positive XMRV will always be positive.

--

Portland, OR

On Jul 10, 2010, at 15:31, Sue <suebackagain123@...> wrote:

> hi vicky. perhaps you should contact VIP diagnostics and order the XMRV

serology test.

>

> good luck

> sue

>

>

>

[Guest guest]

how can an antibody test not be better than a culture test? i dont

understand.....

 

sue

> hi vicky. perhaps you should contact VIP diagnostics and order the XMRV

serology test.

>

> good luck

> sue

>

>

>

[Guest guest]

Sue, I can return the question, what makes you think a serology test will be

better than a culture?

I ordered a XMRV test when they announced their serology test, I had an email

exchange with Annette Whittemore and with VIPDx labs because I was upset that I

just paid a large amount of money for a culture test and now they announced

their serology test which I thought must be much more accurate and better. This

was after a discussion took place on the WPI Facebook page because there were

more people who were asking these kind of questions, and the WPI had just

acquired VIPdx.

As it was explained to me by Marguerite Ross, director of VIPdx the serology

test is an additional way of screening for XMRV.

The culture test is like an presently active virus test. The serology tests for

antibodies to XMRV meaning that if you have been infected with XMRV you MAY have

built up antibodies to the virus. Which is not necessarily the case.

Either test can be " false negative " at any time.

--

Portland, OR

On Jul 10, 2010, at 9:03 PM, Sue wrote:

> how can an antibody test not be better than a culture test? i dont

understand.....

>

> sue

>

>

>

>

> From: <tink.belle@...>

> Subject: Re: New Member

> " " < >

> Received: Saturday, July 10, 2010, 8:57 PM

>

>

>

>

>

>

> Having had an email exchange with the director of VIPdx labs recently, I just

want to make sure that everyone understands that the serological test is not

'better' or more accurate than the cultured one. They developed the serology

test in addition to the culture test not instead of. You will always be able to

choose either one or both.

>

> Neither the serology or the culture test can give you a 100% 'none detected'

outcome. It will always be possible the virus will surface all of a sudden

because it has the ability to hide itself so perfectly or the person might

undergo treatment at that moment which makes it also difficult to detect it.

People who had a 'none detected' result with a prior culture test will be

offered a re-test somewhere this summer using serology.

>

> On the other hand, a positive XMRV will always be positive.

>

> --

>

> Portland, OR

[Guest guest]

Hi . Since culture tests for virus in the blood - which may or may not

be present because this virus is so hard to find - and serology tests for

antibody response - and i would think the vast majority of people make

antibodies to the virus if they have been exposed - wouldn't serology be better?

 

Sue

xoxo

>

>

> From: <tink.belle@...>

> Subject: Re: New Member

> " " < >

> Received: Saturday, July 10, 2010, 8:57 PM

>

>

>

>

>

>

> Having had an email exchange with the director of VIPdx labs recently, I just

want to make sure that everyone understands that the serological test is not

'better' or more accurate than the cultured one. They developed the serology

test in addition to the culture test not instead of. You will always be able to

choose either one or both.

>

> Neither the serology or the culture test can give you a 100% 'none detected'

outcome. It will always be possible the virus will surface all of a sudden

because it has the ability to hide itself so perfectly or the person might

undergo treatment at that moment which makes it also difficult to detect it.

People who had a 'none detected' result with a prior culture test will be

offered a re-test somewhere this summer using serology.

>

> On the other hand, a positive XMRV will always be positive.

>

> --

>

> Portland, OR