Hello, I am a new member

Posted July 21, 2002 · July 21, 2002

>

> Hello, I am a new member to this group and so that everyone can

get familiar with me and my family and why I joined this group.

Besides the fact that I am loosing my mind. My name is

hayworth and I have three children. My husbands name is Greg and my

three girls are Katlyn, Kelsey, and . I am a stay at home mom

and He is a school teacher.

The two first girls mentioned and Kelsey are twins.

They are seven years old and about 1 1/2 years ago was diagnosed

with CVID disease and Lung disease.

They where born six weeks early.

Also they are homebound they are not aloud to go out into public

because they get so sick so easy. They have only attended school six

weeks of their whole life. Been home ever since. Well anyways We have

not been able to get this disease under control for quite awhile now

and we have an appoinment at duke this september. I hoping that they

can help my girls before something really bad happens. Also they are

seven and weigh 30 pounds and have been at that weight now for over a

year.

If anyone has any comments or suggestions please email me.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi !!

Welcome to the group.

I wanted to share with you about Blake. He is 10yrs. old. He was

born weighing 1lb.6oz. His final weight before he finally stared

gaining weight was an even 1 lb. He spent 6 mos. in the NICU. He

had everything go WRONG that should have gone RIGHT. When he came

hoe he was on every monitor possible and Oxygen. Blake had(and still

does have) a very hard time growing. Today he is 55lbs.at 10-1/2

yrs. He stands 4 ft.3 in. tall. He does use a feeding tube for

nighttime nourishment.

When Blake was 7, he was sent to Duke for several different reasons.

Mainly for intestional problems. But we were told this was just so

we could get our feet in the door and get the right people to follow

up with him. At that time he weighed 28lbs. He would gain a few

pounds then lose it. We were told that he had Sucrasoe/Isomaltase

Deficiency. We tried to comply with the dx and not give him starch

and sugar. But in reality he was being starved. Soooooo, off to

Duke we went.

Blake did NOT have the above disease. They found that his Pancreas

was unable to digest Protein. There was a easier fix. He was

started on repalcement Enzymes. We were also told of his Immune

disorder. But Blake had to go a step beyond that---His T-Cells were

NOT working either. Also while there, Blake picked up a Bacterial

infection. It did NOT show up in the port, but in his perphial

blood. It was a nasty one. It took 7 days of Blake suffering to

finally figure out what he had. It was called Serratia. Before we

finally got to go back home(which is a 7 hr. drive for us),while

still on 3 antibiotics through his port, Dr. Myers wanted to run one

more test. It was called a Repiratory Burst. Thsi would tell her if

the infection had caused more damage to Blake's lungs than what had

showed up when we first got there. Indeed it had!!

You see, when Blake was born sooooo early, he had NO lung Function.

Over time, with the use of the vent, O2 and all these nebulizer

treatments, Blake did get somewhat better. But not good enough to go

with out the every 4 hr. treatments. When we were refered to a

Pulmonologist, we were sure that what ever she had up her sleeve,

Blake would get out of doing the treatmente,eventually. But over time

even the Dr. was getting discouraged. Mostly because Blaek was

seeing a Immuno. Dr. But that Immunologist kept telling us that there

was nothing wrong with Blake's immune system. He just needed

to " GROW " . Well being that Blake showed ALL the signs of CF, the

Pulmo. treated him in this manner. Which was a BIG help. Blake

slowly started growing.

In the meantime, BLake still got sicker than most kids his age(maybe

because of smallness)and his bouts of sickness were more " violent "

than the average person. The Pulmo. that Blake sees got tired of the

Immuno. putting everything off on the " Prematurity " . She decided we

needed to move on. With her actually having a previous fellowship at

DUKE, she pulled some strings and got Blake in with the

Gastroenterologist, Treem. He ruled out the

Sucrase/Isomaltase Def. Blake does have the Maltase Def. But that

is untreatable. And really nothing major to worry about. Dr. Treem

got the ball rolling with the Allergy/Immunology Dept. They did all

kinds of testing on him. He showed problems with gastric empting,

his PFT's were in the 40% of his lung capacity. Then the CVID, was

NOT Transient. It was actually full blow with a dificiency in ALL

areas. He has almost no IgG,IgA,IgM. His IgE was out the roof.

Then the T-cell studies came in after we had been home about 4

weeks. It showed that his T-cells were non responsive in all areas.

As to stands now, Blake is completely homebound. The only time he

really gets to go out is to go to his Nana & Poppie's house, go to

the dr. and to get his bi-weekly infusions. Blake sees his pulmo.

every 3-4 weeks. The immunologist sees him every other month. His

levels for IgG are drawn every 3 months. His Liver functions are

drawn every 6 months. Blake still does breathing treatments every 4

hrs. around the clock. He does Pulmicort 3 times a day and uses

Xopenex with these and in inbetween. He does still have the reflux.

and this alone and cause great lung damage if left untreated.

I can sympathize with you about the loneliness of having to stay at

home. It has been torturous here on us. Blake has had a hard time

adjusting to it. The reason is because he wasn't always isolated.

Because his dad stayed in soooooo much denial, Blake " had " to go to

school. He stayed in the hospital more than he did school. But no

one colud convince this man that school and society was actually the

reason he was sooo sick.

After 15 weeks in the hospital for a bone infection in his mastoid

cavity which was brought on by one ear infection too many, DH still

did not see this as Blake's problem. Well after school started last

year, Blake got extremely sick. He got a sinus infection that got

progressively worse over a 3 day peiod, Blake's Peditrician slapped

him in the hospitla. He was there for 2 weeks. Although he stayed

on the IV antibiotics,he went home. Later that same nite, Blake

started running a very high grade fever. I waited 2 days(the

protocal for Blake as given by the Ped.)then called the ped. He sent

a nurse out to check him. Since Blake had taken a bath and tylenol

as told to do so by the ped over the phone, he appeared a little

better than he was before he was given the tylenol. Soooo, the nurse

drawas blood and calls the ped. She tells him that She saw no great

need for Blake to be seen. He could wait until the next day. BIG

MISTAKE!!

The Dr. calls tells us to get Blake to the Children's hosp. ASAP!!

The blood work showed tha Blake's CBC was Normal, but the CRP was

dangerouly high. Blake had a bacterial infection that did not show

up in his blood work. It was later found that Blake's whiteblood

cells were defective and unable to detect infection(we were later

told that this was what had happened at DUKE also,just that

they " forgot " to mention it to us!!!

In the meantime Blake's lung had completely collasped. Sooooo, we

sat 2 hrs. away from home, in a 6x6 room for 6 weeks. The pulmo.

worked with Blake and respiratory really hard so that we could go

home when we did. If it had not been for her and her demand that

Blake be completely removed from the public eye, Blake either would

nt be here or would be residing at Richland Palmetto Hosp. In Col.

SC for the rest of his life!! The lung collaspe opend Dad's and his

parents eyes to what had been going on. Because even Dad's parents

refused to see the problems I was dealing with on a dail basis. But

you can bet they " SEE " it now!!!!

Well, I did not mean to go on so long. Please forgive me

for " rambling "

If you need to chat with someone, just e-mail me I'll be glad

to " listen " .

(mom to Blake CVID/T-Cell Dysfunction and a variety of " things "

going on to make life a little more interesting!!!!)

Posted September 16, 2006 · September 16, 2006

Hi a, I'm sorry to hear you are feeling poorly. It sucks to keep hurting after tx is done and gone. I'm 63 have had hepc since a blood transfusion in 1976 and relapsed after treatment in 2000. I have arthritis and you sound like I feel. My doc told me to take Magnesium Maleate for tissue aches - it works well. She also told my about glucosimine/chondroitin/msm pills that help with joint aches. I also keep my heating pad plugged in and take frequent breaks during the day and cuddle up to it. None of this cures anything, but does bring some comfort to the ooole body. My older sis soaks in a hot water bath most every day to ease her pain. There are new phases of treatment being worked on that give me hope for the future. I'll be among the first in line when something workable is released. Meantime, this group is a very good place to vent

and get some verbal comfort. Sharona <vesta3553@...> wrote: Hello,My name is ine, I have had hep c for over 25 years (maybe more) due to drug use when I was young and foolish. I am a non repsonder to treatment and have been on treatment twice in the last 6 years. The stress of that and my job got to me last year. I quit my job and I had a small business going from my home. that didn't work out--I have been approved for Mass health so I can go to a doctor. Has anyone had a problem with swelling in their hands? My hands swell and my joints in my hands and wrist hurt--it would seem like I have carpel tunnel but this seems a little different. Every joint hurts in my body. Even my neck. I have always been a very active person--always worked and even worked overtime even

through treatments. now I can barely get through my day--I get extremely tired. I had stopped reading about hep c after my doctor did my last test to check on my viral load. That was last year and It had started to creep back up. They said that they didn't want to depress me so they didn't want to do any more test to check my viral load as there really isn't anything that they can do for me. I am going to go to a doctor when I get my helath card in the mail as I am feeling pretty poorly and I need some relief from the pain that I am feeling. All the advil, naprosen and aleve don't really do much for it. I keep getting fluid in my ear--what a mess LOL. thanks so much for listening I don't have anyone that I talk to about any of this and I appreciate any suggestions that I can get.ineThanks for listening--

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

Posted September 16, 2006 · September 16, 2006

Hi a, I'm sorry to hear you are feeling poorly. It sucks to keep hurting after tx is done and gone. I'm 63 have had hepc since a blood transfusion in 1976 and relapsed after treatment in 2000. I have arthritis and you sound like I feel. My doc told me to take Magnesium Maleate for tissue aches - it works well. She also told my about glucosimine/chondroitin/msm pills that help with joint aches. I also keep my heating pad plugged in and take frequent breaks during the day and cuddle up to it. None of this cures anything, but does bring some comfort to the ooole body. My older sis soaks in a hot water bath most every day to ease her pain. There are new phases of treatment being worked on that give me hope for the future. I'll be among the first in line when something workable is released. Meantime, this group is a very good place to vent

and get some verbal comfort. Sharona <vesta3553@...> wrote: Hello,My name is ine, I have had hep c for over 25 years (maybe more) due to drug use when I was young and foolish. I am a non repsonder to treatment and have been on treatment twice in the last 6 years. The stress of that and my job got to me last year. I quit my job and I had a small business going from my home. that didn't work out--I have been approved for Mass health so I can go to a doctor. Has anyone had a problem with swelling in their hands? My hands swell and my joints in my hands and wrist hurt--it would seem like I have carpel tunnel but this seems a little different. Every joint hurts in my body. Even my neck. I have always been a very active person--always worked and even worked overtime even

through treatments. now I can barely get through my day--I get extremely tired. I had stopped reading about hep c after my doctor did my last test to check on my viral load. That was last year and It had started to creep back up. They said that they didn't want to depress me so they didn't want to do any more test to check my viral load as there really isn't anything that they can do for me. I am going to go to a doctor when I get my helath card in the mail as I am feeling pretty poorly and I need some relief from the pain that I am feeling. All the advil, naprosen and aleve don't really do much for it. I keep getting fluid in my ear--what a mess LOL. thanks so much for listening I don't have anyone that I talk to about any of this and I appreciate any suggestions that I can get.ineThanks for listening--

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

Posted September 16, 2006 · September 16, 2006

Thanks Sharon for sharing the info with me. I use to take magnesium

maleate a few years ago. I do have some form of arthritis but I haven't

been to a doctor in almost a year--I had changed doctors when I had

moved and miss my old doctor. I haven't had health insurance for a

while. Do you have fluid in your hands and feet? I have it and alot of

pain in my hands-all I have to do is get up and start moving around,

pick up even something small and it all starts-my knuckles swell up with

fluid and my fingers get tight and sore-sometimes my hands hurt so much

that they wake me up in the middle of the night. I have tried milk

thistle and different things.

I did treatments twice--with the first the doctor told me to stop after

3 months because my viral load had started to go down and then reversed.

a few years later when my vital load was just under 2 mil and I was

feeling bad I started again but only 1 shot a week and 4 pills a day--it

was slow going but I got down to 700 after 10 months and then it went up

to 1300 before I had even ended treatment. That was 2 years ago--last

december I was at 125,00.. I am not feeling well at all and can't work.

I need to get some kind of assistance so after I go to the doctor I will

apply for something. I am 53 years old and have had this for a very

long time-since the middle 70s

Sharon, are you in remission now? How are you doing? And thank you so

much for answering me.

a

> Hello,

> My name is ine, I have had hep c for over 25 years (maybe more)

> due to drug use when I was young and foolish. I am a non repsonder

> to treatment and have been on treatment twice in the last 6 years.

> The stress of that and my job got to me last year. I quit my job

> and I had a small business going from my home. that didn't work out-

> -I have been approved for Mass health so I can go to a doctor. Has

> anyone had a problem with swelling in their hands? My hands swell

> and my joints in my hands and wrist hurt--it would seem like I have

> carpel tunnel but this seems a little different. Every joint hurts

> in my body. Even my neck. I have always been a very active person--

> always worked and even worked overtime even through treatments. now

> I can barely get through my day--I get extremely tired. I had

> stopped reading about hep c after my doctor did my last test to

> check on my viral load. That was last year and It had started to

> creep back up. They said that they didn't want to depress me so

> they didn't want to do any more test to check my viral load as there

> really isn't anything that they can do for me. I am going to go to

> a doctor when I get my helath card in the mail as I am feeling

> pretty poorly and I need some relief from the pain that I am

> feeling. All the advil, naprosen and aleve don't really do much for

> it. I keep getting fluid in my ear--what a mess LOL. thanks so

> much for listening I don't have anyone that I talk to about any of

> this and I appreciate any suggestions that I can get.

> ine

> Thanks for listening--

>

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

> Talk is cheap. Use Messenger to make PC-to-Phone calls. Great

rates starting at 1¢/min.

>

Posted September 16, 2006 · September 16, 2006

Hi ine , welcome to the group . I am a non responder also but the last time I did the treatment I did the new med called Infergen and by week 8 my viral load went from 14 million to under 300 . I would have cleared if I had been able to stay on the med, I was taken off because of a cardiac problem ( one that I have had for 15yrs) started causing problems . You might want to discuss with your doctor the chance of treating again using a newer medication . And about your swelling joints , it sounds like Rheumatoid Arthritis . So have your doctor test you for rh factor , it's a simple blood test . I have the same problem with my hands swelling and the joints hurting really really bad , and it was diagnosed as Rheumatoid Arthritis . The fatigue you feel is a side effect of the hepatitis c and if you do decide to try treatment again , it will help get rid of the tiredness you feel . Once again welcome to the group

hello, I am a new member

Hello,My name is ine, I have had hep c for over 25 years (maybe more) due to drug use when I was young and foolish. I am a non repsonder to treatment and have been on treatment twice in the last 6 years. The stress of that and my job got to me last year. I quit my job and I had a small business going from my home. that didn't work out--I have been approved for Mass health so I can go to a doctor. Has anyone had a problem with swelling in their hands? My hands swell and my joints in my hands and wrist hurt--it would seem like I have carpel tunnel but this seems a little different. Every joint hurts in my body. Even my neck. I have always been a very active person--always worked and even worked overtime even through treatments. now I can barely get through my day--I get extremely tired. I had stopped reading about hep c after my doctor did my last test to check on my viral load. That was last year and It had started to creep back up. They said that they didn't want to depress me so they didn't want to do any more test to check my viral load as there really isn't anything that they can do for me. I am going to go to a doctor when I get my helath card in the mail as I am feeling pretty poorly and I need some relief from the pain that I am feeling. All the advil, naprosen and aleve don't really do much for it. I keep getting fluid in my ear--what a mess LOL. thanks so much for listening I don't have anyone that I talk to about any of this and I appreciate any suggestions that I can get.ineThanks for listening--

Posted September 16, 2006 · September 16, 2006

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raising adults' omega-3 levels with fish oil supplements. Using a computer-simulated community of 100,000 Americans and data from past medical studies, the researchers calculated that raising omega-3 levels would save 58 lives each year. This amounts to a 6.4-percent total death reduction -- mostly by preventing sudden cardiac death in apparently people, according to the study authors, led by Dr. E. Kottke of the Heart Center at Regions Hospital in St. , Minnesota. Conversely, the researchers estimate that far fewer lives would be saved by defibrillators, devices that deliver a "shock" to restart the heart or to resolve ventricular fibrillation, an otherwise fatal heartbeat irregularity in which the heart quivers instead of contracting normally. For example, the study found, even if automated external defibrillators (AEDs) were available in every home and public area, the devices would lower a community's annual

death rate by less than 1 percent. AEDs are portable devices that can be used by lay people to shock someone in cardiac arrest. They are frequently available in public places such as large stores or on airplanes. Though the devices do save lives, the researchers note that AEDs would make little difference in the overall rate of sudden cardiac death. Kottke's team estimates that implantable defibrillators would lower the cardiac death rate by 3.3 percent, still not as much as the 6.6-percent lower death rate achieved by increasing the use of fish oil supplements. Though the implantable devices are effective, the researchers point out that about half of adults who die suddenly from cardiac arrest have no warning signs beforehand -- and would, therefore, never be candidates for an implanted defibrillator. The study, which is published in the American Journal of Preventive Medicine, has its limitations, as a computer simulation.

Though the researchers based their estimates of fish oil benefits on two large studies, it's not yet clear that omega-3 fatty acids prevent sudden cardiac death in apparently healthy people. Ongoing trials in Italy and England may help answer this question, Kottke and his colleagues note. If fish oil is as effective against fatal heart arrhythmias as evidence suggests, the researchers conclude, it would have more widespread benefits than either AEDs or implanted defibrillators. SOURCE: American Journal of Preventive Medicine, October 2006. Email Story IM Story Discuss Printable View RECOMMEND THIS STORY Recommend It: Average (321 votes) » Recommended Stories Health News Spinach pulled from stores across U.S. AP Study: Annual shot of drug helps bones AP Japan's centenarians at record 28,395 AP Psychotherapy, gene pioneers honored AP Dr.: Va. teen cancer patient improving AP Most Viewed - Health Shoppers avoid spinach in E. coli scare AP British minister says ban scrawny models AP Study: Annual shot of drug helps bones AP Alcohol use helps boost income: study AFP Japan's centenarians at record 28,395 AP Health Video Childhood obesity on the rise CNN - 2 hours, 35 minutes ago Deadly Spinach: E. Coli Outbreak Grows ABC News - Fri Sep 15, 9:31 PM ET Treating Seniors for Depression ABC News - Fri Sep 15, 6:01 PM ET Health Minute: Youth smoking CNN - Fri Sep 15, 12:08 PM ET Elsewhere on the Web CNN.comShoppers shun spinach as E. coli cases top 100 CNN.comFDA: Don't eat bagged spinach ABC Newss' Death Highlights Rise in Esophageal

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Posted September 17, 2006 · September 17, 2006

Hi a You should apply for SSDI since you are disabled,, and it will be a long hard fight to get it but do NOT give up.. Get a good doc who can substantiate your claim and just expect that they will turn you down at least twice and it will take you around 2 years to get it,, and you may have to go before to judge to get it as I did. Dont give up tho, you paid into your ss and its there for you to use when you need it and it sounds like you need it now... jaxa <vesta3553@...> wrote: Thanks Sharon for sharing the info with me. I use to take magnesiummaleate a few years ago. I do have some form of arthritis but I haven'tbeen to a doctor in almost a year--I had changed doctors when I hadmoved and miss my old doctor. I haven't had health insurance for awhile. Do you have fluid in your hands and feet? I have it and alot ofpain in my hands-all I have to do is get up and start moving around,pick up even something small and it all starts-my knuckles swell up withfluid and my fingers get tight and sore-sometimes my hands hurt so muchthat they wake me up in the middle of the night. I have tried milkthistle and different things.I did treatments twice--with the first the doctor told me to stop after3 months because my viral load had started to go down and then reversed.a few years later when my vital load was just under 2 mil and I wasfeeling bad I started again but only 1 shot a week and 4 pills a

day--itwas slow going but I got down to 700 after 10 months and then it went upto 1300 before I had even ended treatment. That was 2 years ago--lastdecember I was at 125,00.. I am not feeling well at all and can't work. I need to get some kind of assistance so after I go to the doctor I willapply for something. I am 53 years old and have had this for a verylong time-since the middle 70sSharon, are you in remission now? How are you doing? And thank you somuch for answering me.a> Hello,> My name is ine, I have had hep c for over 25 years (maybe more)> due to drug use when I was young and foolish. I am a non repsonder> to treatment and have been on treatment twice in the last

6 years.> The stress of that and my job got to me last year. I quit my job> and I had a small business going from my home. that didn't work out-> -I have been approved for Mass health so I can go to a doctor. Has> anyone had a problem with swelling in their hands? My hands swell> and my joints in my hands and wrist hurt--it would seem like I have> carpel tunnel but this seems a little different. Every joint hurts> in my body. Even my neck. I have always been a very active person--> always worked and even worked overtime even through treatments. now> I can barely get through my day--I get extremely tired. I had> stopped reading about hep c after my doctor did my last test to> check on my viral load. That was last year and It had started to> creep back up. They said that they didn't want to depress me so> they didn't want to do any more test to check my viral load as there>

really isn't anything that they can do for me. I am going to go to> a doctor when I get my helath card in the mail as I am feeling> pretty poorly and I need some relief from the pain that I am> feeling. All the advil, naprosen and aleve don't really do much for> it. I keep getting fluid in my ear--what a mess LOL. thanks so> much for listening I don't have anyone that I talk to about any of> this and I appreciate any suggestions that I can get.> ine> Thanks for listening-->>>>>>>>> ---------------------------------> Talk is cheap. Use Messenger to make PC-to-Phone calls. Greatrates starting at 1¢/min.>Jackie

Posted September 17, 2006 · September 17, 2006

Awww sharon, I too spend much time every day in the hot tub, its the ONLY time I am painfree... Im almost 4 years post tx and hopefully still undetectible but was left with autoimmune issues from treatment..Sharon Crosby <blubirdxoxo@...> wrote: Hi a, I'm sorry to hear you are feeling poorly. It sucks to keep hurting after tx is done and gone. I'm 63 have had hepc since a blood transfusion in 1976 and relapsed after treatment in 2000. I have

arthritis and you sound like I feel. My doc told me to take Magnesium Maleate for tissue aches - it works well. She also told my about glucosimine/chondroitin/msm pills that help with joint aches. I also keep my heating pad plugged in and take frequent breaks during the day and cuddle up to it. None of this cures anything, but does bring some comfort to the ooole body. My older sis soaks in a hot water bath most every day to ease her pain. There are new phases of treatment being worked on that give me hope for the future. I'll be among the first in line when something workable is released. Meantime, this group is a very good place to vent and get some verbal comfort. Sharona <vesta3553 > wrote: Hello,My name is ine, I have had hep c for over 25 years (maybe more)

due to drug use when I was young and foolish. I am a non repsonder to treatment and have been on treatment twice in the last 6 years. The stress of that and my job got to me last year. I quit my job and I had a small business going from my home. that didn't work out--I have been approved for Mass health so I can go to a doctor. Has anyone had a problem with swelling in their hands? My hands swell and my joints in my hands and wrist hurt--it would seem like I have carpel tunnel but this seems a little different. Every joint hurts in my body. Even my neck. I have always been a very active person--always worked and even worked overtime even through treatments. now I can barely get through my day--I get extremely tired. I had stopped reading about hep c after my doctor did my last test to check on my viral load. That was last year and It had started to creep back up. They said that they didn't want to depress me so

they didn't want to do any more test to check my viral load as there really isn't anything that they can do for me. I am going to go to a doctor when I get my helath card in the mail as I am feeling pretty poorly and I need some relief from the pain that I am feeling. All the advil, naprosen and aleve don't really do much for it. I keep getting fluid in my ear--what a mess LOL. thanks so much for listening I don't have anyone that I talk to about any of this and I appreciate any suggestions that I can get.ineThanks for listening-- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Jackie

Posted September 17, 2006 · September 17, 2006

Geeze Jackie ,,,,2 yrs ? I was approved in 3 months . a if you do apply for ssdi make sure to give them every single last problem you are having , especially if you suffer from depression . It's the whole range of problems that will get you approved or not . Hep C by itself isnt enough these days unless you are endstage , but if you have a multitude of problems all connected approval can be swift.

Re: Re: hello, I am a new member

Hi a

You should apply for SSDI since you are disabled,, and it will be a long hard fight to get it but do NOT give up.. Get a good doc who can substantiate your claim and just expect that they will turn you down at least twice and it will take you around 2 years to get it,, and you may have to go before to judge to get it as I did. Dont give up tho, you paid into your ss and its there for you to use when you need it and it sounds like you need it now...

jaxa <vesta3553 > wrote:

Thanks Sharon for sharing the info with me. I use to take magnesiummaleate a few years ago. I do have some form of arthritis but I haven'tbeen to a doctor in almost a year--I had changed doctors when I hadmoved and miss my old doctor. I haven't had health insurance for awhile. Do you have fluid in your hands and feet? I have it and alot ofpain in my hands-all I have to do is get up and start moving around,pick up even something small and it all starts-my knuckles swell up withfluid and my fingers get tight and sore-sometimes my hands hurt so muchthat they wake me up in the middle of the night. I have tried milkthistle and different things.I did treatments twice--with the first the doctor told me to stop after3 months because my viral load had started to go down and then reversed.a few years later when my vital load was just under 2 mil and I wasfeeling bad I started again but only 1 shot a week and 4 pills a day--itwas slow going but I got down to 700 after 10 months and then it went upto 1300 before I had even ended treatment. That was 2 years ago--lastdecember I was at 125,00.. I am not feeling well at all and can't work. I need to get some kind of assistance so after I go to the doctor I willapply for something. I am 53 years old and have had this for a verylong time-since the middle 70sSharon, are you in remission now? How are you doing? And thank you somuch for answering me.a> Hello,> My name is ine, I have had hep c for over 25 years (maybe more)> due to drug use when I was young and foolish. I am a non repsonder> to treatment and have been on treatment twice in the last 6 years.> The stress of that and my job got to me last year. I quit my job> and I had a small business going from my home. that didn't work out-> -I have been approved for Mass health so I can go to a doctor. Has> anyone had a problem with swelling in their hands? My hands swell> and my joints in my hands and wrist hurt--it would seem like I have> carpel tunnel but this seems a little different. Every joint hurts> in my body. Even my neck. I have always been a very active person--> always worked and even worked overtime even through treatments. now> I can barely get through my day--I get extremely tired. I had> stopped reading about hep c after my doctor did my last test to> check on my viral load. That was last year and It had started to> creep back up. They said that they didn't want to depress me so> they didn't want to do any more test to check my viral load as there> really isn't anything that they can do for me. I am going to go to> a doctor when I get my helath card in the mail as I am feeling> pretty poorly and I need some relief from the pain that I am> feeling. All the advil, naprosen and aleve don't really do much for> it. I keep getting fluid in my ear--what a mess LOL. thanks so> much for listening I don't have anyone that I talk to about any of> this and I appreciate any suggestions that I can get.> ine> Thanks for listening-->>>>>>>>> ---------------------------------> Talk is cheap. Use Messenger to make PC-to-Phone calls. Greatrates starting at 1¢/min.>Jackie

Posted September 17, 2006 · September 17, 2006

Hi Jackie,

2 years--wow, I can't wait that long - I have no income at all and it

sucks. I live across the street from my sister and Mother in my sisters

house I drive they don't so I am suppose to be available when they need

me and they give me money to live on. I don't like that at all. I had

it good last year when I was working and had a good but very stressful

job. Pain in my neck , side and everything else got to me plus the

favoritism in work--I quit. Stupid thing to do . Now I am getting

free health care starting next week. I would love to go to work but

can't even do things around here for more than an hour if that and then

I have to rest for hours. I haven't responded to any treatments--After

I go to the doctor and it isn't the one that I had for all those years-I

will go apply--but if they tell me no or that I have to wait for

months-or say no-I don't know I guess I will try to go job hunting.

That's a joke. I can't even pick up a cup or sit like this for very

long and then every joint starts to scream. When i was working there

were 2 in work cousins who didn't want to work anymore so they went out

for anxiety--you know they both got on ssdi and it only took them about

6 months. But there are days I use a walking stick and if I can't get

it then there is a problem with the system.ine

> > Hello,

> > My name is ine, I have had hep c for over 25 years (maybe more)

> > due to drug use when I was young and foolish. I am a non repsonder

> > to treatment and have been on treatment twice in the last 6 years.

> > The stress of that and my job got to me last year. I quit my job

> > and I had a small business going from my home. that didn't work out-

> > -I have been approved for Mass health so I can go to a doctor. Has

> > anyone had a problem with swelling in their hands? My hands swell

> > and my joints in my hands and wrist hurt--it would seem like I have

> > carpel tunnel but this seems a little different. Every joint hurts

> > in my body. Even my neck. I have always been a very active person--

> > always worked and even worked overtime even through treatments. now

> > I can barely get through my day--I get extremely tired. I had

> > stopped reading about hep c after my doctor did my last test to

> > check on my viral load. That was last year and It had started to

> > creep back up. They said that they didn't want to depress me so

> > they didn't want to do any more test to check my viral load as there

> > really isn't anything that they can do for me. I am going to go to

> > a doctor when I get my helath card in the mail as I am feeling

> > pretty poorly and I need some relief from the pain that I am

> > feeling. All the advil, naprosen and aleve don't really do much for

> > it. I keep getting fluid in my ear--what a mess LOL. thanks so

> > much for listening I don't have anyone that I talk to about any of

> > this and I appreciate any suggestions that I can get.

> > ine

> > Thanks for listening--

> >

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

> > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great

> rates starting at 1¢/min.

> >

>

> Jackie

>

Posted September 17, 2006 · September 17, 2006

Thanx, I was alittle worried there--I don't know what I would do if I

had to wait years---I can't live on charity forever that isn't me. I

have worked most of my life and always took care of myself--at least

with the ssi- I paid into it so I know what i will be getting will be

mine. Thanks again