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Denial wasn't the best option
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An_243032 posted:
I used to frequent these boards 15 years ago. Learned so much and got so much support that I was able to get back on my feet and out of my fear. I went through combo treatment before pegylated came along. Since I had a responsive genotype, supposedly, I did clear the virus after 6 months of treatment. Relapsed 6 months later. Viral load exploded. First round of treatment was rough for me so opted to "wait and see". That was a long time ago. Found out awhile ago I developed mixed cryoglobulinemia. Went back into ostrich mode and now I have swollen glands (used to come and go) and they are getting more in number and bigger every day. Fatigue. Endless headaches, etc. Scared about B cell NHL. I have appt in one month with GI. Til then I need to turn to someone. So here I am.

If any "old timers" are still here, my screen name back then was Hepwolf. Thank you for taking the time to read this.
Reply
 
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Haylen_WebMD_Staff responded:
Support is still here for you Hepwolf!

Is it possible to get an appointment sooner than a month away? It would be great to get your pain and fatigue addressed ASAP. Being scared about a diagnosis is stressful! Please be as proactive as possible to get an appointment.

Thank you for taking the time to write! Others who want to go "ostrich" may benefit from your experience and insight.

Haylen
 
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Hepwolf2012 replied to Haylen_WebMD_Staff's response:
Thank you for your reply. Yes, I will try to do that. Fear is not a good thing for my immune system. Sharing the burden sure does help.
 
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Haylen_WebMD_Staff replied to Hepwolf2012's response:
I'm glad to hear that! Keep us updated here and work on your stress level
 
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billm57 responded:
hi - i would ask for a biopsy of lymph nodes to determine if nhl is present - also a liver biopsy - and i would definately consider retreating - clearing the virus can alleviate cryo and swollen lymph nodes
 
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Hepwolf2012 replied to billm57's response:
Your advice is much appreciated. The experience shared here is excellent. It was until the rheumatologist (who i saw eventually for arthritis) ordered complete work up that the mixed cryo was discovered. I wish I had been on top of this. I don't like the prognosis if NHL turns out to be the case. My siblings all have autoimmune disorders. I kept saying I responded to treatment like someone with autoimmune disease. I wonder if that was a clue.

Thank you again. These responses help a person to not feel so alone in this battle.
 
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billm57 replied to Hepwolf2012's response:
the hepatitis c virus is well documented as to its many adverse effects on the immune system - far more so than the treatment - IMO- people who have never treated may develop nhl - its one of many extrahepatic manifestations of the disease - i can imagine its hard not to project about all the possibilities and ramifications - but why dwell on the milk that may be spilled - lol
 
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DogDame responded:
Hi Hepwolf! It was Auntie D when I was a regular here and I'm sorry to hear that you're having such a terrible time. I definitely remember you. Weird timing since I maybe drop in here once a year, so I'm delighted that my one time was your time too This board saved my life - literally - while I was on tx, so I think it's an incredibly smart move that you came back for support and love. Hope all improves for you going forward.

Danielle
 
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Hepwolf2012 replied to billm57's response:
Thanks...you are right about keeping things in perspective. Your insight and opinions are always welcome. Staying positive and trying to keep laughter in my life.
 
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Hepwolf2012 replied to DogDame's response:
Wow. Awesome to hear from you! Wondering if anyone was still around. I remember you also but must admit the memory is not quite as sharp as it used to be for details. Thanks for the support. Looks like I need to take another shot at clearing this with tx. The cryo and rising lymphocytes with enlarging glands has me very concerned. I see the GI doc soon and will get that ball rolling. I am pretty sure I will be staying in closer touch. So much has happened in the last decade. I've been quite ignorant but it's time to get informed again. Plus, as you say, these boards with the love and support can be life sustaining.

I'm hoping you are doing well. We both remember when the "experts" wouldn't use the word "cure" & now it seems I have read that word more than once.

Hope is the best medicine! I hope to hear from you again. Thanks for your kind words and my best to you.
 
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oldtiff47 replied to Hepwolf2012's response:
AUNTIE D AND HEPWOLF GREAT TO SEE BOTH OF YOU...

TIFF
DON'T TAKE YOUR ORGANS TO HEAVEN...HEAVEN KNOWS WE NEED THEM HERE !!
 
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Hepwolf2012 replied to oldtiff47's response:
OldTiff...glad to BE seen. Love that YOU cleared so late in the battle. Gives me hope. Thanks for being here.


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