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Just a quick note to say hi!
You deserve a big bear hug!
You're in my thoughts all the time, but especially today.
Thank you for everything!
Welcome to our community!
You are in my thoughts and prayers.
Hope you feel better soon!
Congratulations! Time for a celebration...
Happy Birthday!
Avatar universal
05/08
Sorry that you're hurting so much!   I've been out of town the past 4 days with no access to a computer!   I was at a trial site, checking into a trial.   I may be on TX again in the near future.....  we'll see.  Susan
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253566 tn?1219679699
05/08
Hi sadd. Good luck on the TENS unit. Let me know how it goes.

later,
frank
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253566 tn?1219679699
05/08
Hope you are feeling better today Daryl,

Good luck on the TENS unit. Let me know how it goes.

later,
frank
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253566 tn?1219679699
05/08
Hi sadd. Good luck on the TENS unit. Let me know how it goes.

later,
frank
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253566 tn?1219679699
05/08
Hi sadd. Good luck on the TENS unit. Let me know how it goes.

later,
frank
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253566 tn?1219679699
05/08
Hi sadd. Good luck on the TENS unit. Let me know how it goes.

later,
frank
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253566 tn?1219679699
05/08
good luck with the TENS unit. I hope it helps you as much as it helped me.

I also hope that your insurance will purchase it for you. The way it worked for me was they gave it a one month trial to see that it worked then when the doc agreed that it worked they put in a request for purchase. My insurance denied it but again Mom had her doc get one for her and I am using it.

hope it all helps,
more hugs,
frank
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253566 tn?1219679699
05/08
PT 2:

The docs wanted to do surgery on my shoulder but it seemed too barbaric. After refusing the docs then told me that such conditions usually repair themselves in a year or 1.5 years. Mine has seemingly gotten much better on its own. I still have some range of motion loss but the daily pain is nearly gone. Hope you have the same success.

hugs,
frank
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253566 tn?1219679699
05/08
Here is the link for the 60 MIN thread: http://www.medhelp.org/posts/show/521026. Seems like a great idea.

I found that therapy helped the first month. My improvements were marked but went back to first test after the first month. The TENS unit helped immensely. I could not wear it during the nite so took those pain meds but when I was wearing the TENS unit I didnt need the pain meds at all. My insurance wouldnt cover it so Mom got her doc to order one for her and I use that. You can find them on line and ebay. New & the best are very very expensive but I dont know what the difference is with cheaper ones???

pt 2 coming:
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253566 tn?1219679699
05/08
Hi sadd,

Wow, you are in pretty bad shape. I cant imagine having tendons torn in both shoulders. I was able to use a TENS unit which helped immensely. Have you tried one?

I really feel for you and am in shock at how this treatment has destroyed peoples lives. Someone started an email campaign for 60 Mins to do a piece. I was thinking it would be a good idea to send an email from people who have cured and are suffering for years.

take care and praying that you get some better days soon,
hugs,
frank
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253566 tn?1219679699
05/08
cont...

Have you considered Mayo? My GP understands my/our situation. He had Hep B & two liver transplants. His wife is a nurse and had C with the same treatment as us and five years later still suffering so my GP believes the hep docs are lying to themselves. At least I have my good GP to hang onto.

If ya ever want to contact me by email use ***@**** - this 800 character limit is silly.
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253566 tn?1219679699
05/08
Hey sadd, How ya feeling today? I wake up feeling ok but then five hours crash real bad. Chronic fatigue is one of my worse conditions. I also cant lose weight no matter what I do. I had really bad Diarrhea for a week last year and couldnt drink a teaspoon of water but I gained a pound. I weigh 230 and only eat about 1200 cals exercise ofter and the weight remains. The brain fog is horrible but was worse on treatment. I woke up one day with horrific shoulder pain and lose of movement. An MRI showed that I had sever torn ligament and other stuff that was only possible thru surgery or accident. My blood count is chaotic and I am now forced on cholesterol and iron meds.

How about you?

cont next note...
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Avatar universal
05/08
Sadd, how are you doing.  Things will improve.  Keep the faith.   Susan
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253566 tn?1219679699
05/08
Hi sadd,

Thanks for you note... it really amazes me when the liver docs say they have never heard of patients like us when there are so many here. I have copied some of the complaints and given to my doc but wonder if he really cares??? I hate to think like this but???

We have to keep fighting the medical system that destroyed our lives. That at least will give us some power.

good luck and take care,
frank
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Avatar universal
05/08
Hope you feel better soon! I really appreciate you saying that, it's a pity not all the people on this chat are as empathetic, I am alot less angry than I was last week ( I only found out all the bad news this time last week) and I figure if I coped with the 48 weeks I can cope with this too.
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Avatar universal
05/08
Hi SADD... nope, I'm not a nurse.  There are two kinds of PCR's.  One is a Quantitative that measures the specific amount of viral load in your blood between specific limits, particularly a specific upper limit cut-off. the other is Qualitative and measures if you HAVE viral load or not down to a specific lower limit.   When you see a Qual PCR, you may see something like UND <15 IU/ml  That means there is no viral load detectable down to 15 IU/ml.  Which means you might have 1-14 virions in your blood that the test can't measure.  I don't know much about the Heptimax or the different tests.  You'll need to post and ask that questions.  Hope this helps.

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Avatar universal
05/08
Just a quick note to say hi!

I do think that it is the tx.  I just looked up two Dermatologists that are very close to my job and am going to try to get an appt tomorrow; if not Monday or Tuesday next week.  The spot on my collar bone does resemble a ringworm but until a professional tells me that it is I am not saying I have it.  
When I told my friend at work she told me I can't come to work w ringworm.  She has a 3 yr old daughter who had it and she said kids have to stay home when they have it.  She really pissed me off!  I just talked to my mom and she told me that my grandfather had the Atopic Dermatitis around the eyes, eyebrows, hair line, and corners of his mouth.  Dry flaky skin that is also red.  She feels that the meds I am on brought it out heredity wise.  

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495402 tn?1220617403
05/08
Good morning, I hope you had a good weekend.  Hearing what you say really helps me, I know I need treatment, one day I'm all for it and want to do it, the next day I say no way, do I really want to give up feeling good to feel horrible for a year and then still may not have cleared the virus.  It's so hard and I'm very scared.  I don't want to loose my hair or come away feeling sick all the time.  I do intend to wait until the end of the summer so I have time to think about it.  I'm going to see a psychiatrist and opthamologist at my dr.'s request and be all ready to go.  Hopefully I will go through with it.  I have arthritis in my fingers, wrist and sciatica in my right thigh and hip, I'm not sure if that's from the hepc or not.  Was yours from the hepc?
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Avatar universal
05/08
Thank you for everything!  I appreciate your note!  I went to the DX today and I have one shot tonight and then next Fri is my last shot!  I don't have to go back for 6 mos (Nov.).  She gave me 3 lab orders:  1 for 4 wks post tx, 1 for 3 mos post tx, and 1 for 6 mos. post tx.  It has been a long year of appointments, lab work, prescriptions and shots and I am happy right now.  

I will pray for you.
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495402 tn?1220617403
05/08
I am not that far behind you, I'm 56, funny my doctor told me that I'd be a good candidate for treatment because, I'm female, my age, etc. etc...  The more I speak with her, the more I'm not sure about her, she's very young.  I may get another opinion on whether or not I can wait until newer drugs are approved.

I hope you start to feel better soon, have a good weekend and I will talk to you next week!
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495402 tn?1220617403
05/08
Thank you so much, I really appreciate your kind words, I see you like Gardening too, isn't it wonderful?  I sure hope that you have been able to work in your garden, I was reading about the problems you've been having post treatment, it's very scary, makes me wonder whether it's all worth it.  I keep asking myself if I want to give up a year of my life, maybe more, to feel even worse after it's all over...I'm just not sure.
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