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Author Topic: New to forum -- HepC & cryoglobulinemia  (Read 9561 times)

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Offline aurelian

  • Newbie
  • Posts: 1
  • aurelian
New to forum -- HepC & cryoglobulinemia
« on: July 31, 2014, 02:55:20 pm »
Hi Folks. I just typed out a long post and somehow lost it, so if it turns up twice, plse forgive me. I was diagnosed with HepC in 1994 and have had symptom since 2001. Recently I was diagnosed with cryoglobulinemia. I've been quite ill over the past three months with the following symptoms: Severe pain in testicles, abdomen, lower back and thighs (when I say severe, I mean almost unbearable); headaches; nausea; vomiting; lack of appetite; skin rash; weight loss. My Primary Care Physician just told me a few days ago that I have cryoglobulinemia. My research tells me that it is a potentially serious complication of HepC occurring in 30% of cases, causing vasculitis with potential kidney, lung, and other organ damage. Yikes! Is there anyone who has this condition, or knows something about it, who can give me any information from a PATIENT'S point of view? My GP is very good, however, I live in a fairly remote area and he's never had a case of this before. I'll be going to see my hepatologist soon. I'd appreciate any feedback, thank you.
aurelian -- Buddhist monk living with HepC in the mtns. of British Columbia Canada.

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: New to forum -- HepC & cryoglobulinemia
« Reply #1 on: July 31, 2014, 05:18:10 pm »
ADNORMAL PROTIENS IN YOUR BLOOD WHICH CAUSES YOUR BLOOD TO BE LIKE MAPLE SYUPT ,  WHICH CAN CAUSE BLOOD CLOTS ETC.  JUST THINK OF A NORMAL PERSONS SCENARIO..  THERE CRUSING ALONG, BLOOD FLOW IS GOOD, WHICH HELPS HEART WORK WELL, HELPS WITH ENERGY, BRAINFLOW AND ALL THE OTHER STUFF THAT GOOD FLOWING BLOOD DOES.ETC.  NOW TAKE CRYOGLOBULINEMIA,, THATS THE COMPLETE OPPOSITE SCENARIO OF WHAT I JUST SAID.BLOOD IS ;NOT; FLOWING WELL AT ALL. YES,NOT GOOD NEWS,A BLOOD CLOT COULD HAPPEN  SO YOUR DR. YOUR TREATMENT ARE IMPORTANT  NOW. NOW I DONT HAVE IT AND HOPE I NEVER WILL BUT I AM GENO 1 HCV 12MILLION,,7,1  ETC. AND THATS WHAT IM BEING TREATED FOR WITH SOLVI AND OYLISIO FOR 12 WEEKS, ON MY 2 WEEK SO  I CANT MESS AROUND WITH MY DIAGNOSIS NO MORE THAN YOU CAN SO WITH THAT SAID,  KEEP SEARCHING, KEEP LISTENING , MAKE SURE YOUR DR. IS ON TOP OF THIS AND IF NOT,DO GET A SPECIALIST DR. FOR YOUR DISEASE. NOT JUST A MD.  ONCE AGAIN THIS IS JUST MY OPINION.  GOOD LUCK MY FRIEND. WE GO TO BED ONE WAY AND ALL OF A SUDDEN WE WAKE UP ANOTHER WAY.  MORAL OF THE STORY? I WISH I KNEW,,   WILLIE G  PRAYING FOR YA RIGHT NOW FOR YOU,, DO THE SAME FOR ME,  THANKYOU

Offline canythingbutaverage

  • Member
  • Posts: 13
  • Genotype 1a (Q30Q/R, H58D, Y93Y/C)
    • C Anything But Average
Re: New to forum -- HepC & cryoglobulinemia
« Reply #2 on: August 01, 2014, 04:59:19 pm »
When's the last time you had some serious tests done e.g. bloodwork/Ultrasound/MRI ?

Diet and vitamin levels can assist your day to day functionality issues that come from liver failure. But you'll need to know the extent of the damage before a doc can give ya the rights meds/vittles to balance you out.

Both my mother and i had issues dealing with cold temperatures, in my case my friends liken me to a lizard. While we neither of us we diagnosed with it, we had other symptoms to focus on.

It's odd that you're showing symptoms in the summertime, but perhaps I'm assuming you're in the states.

Regardless of that, getting the information you need regarding what meds to take and foods to eat to balance your liver's deficit will be crucial to helping you along.
Energy and persistence conquer all things

http://blogs.hepmag.com/ricknash/

Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: New to forum -- HepC & cryoglobulinemia
« Reply #3 on: August 10, 2014, 10:43:17 pm »
Hi Aurelian,
  I don't have any info for you, but was drawn by you being a Buddhist monk and British Columbia. I am a practicing Buddhist following the Shambhala lineage. I will include you in my Tonglin practice. It is a Tibetan Mahayana practice of Taking and Sending. I would like to keep in touch if that is fine with you.
  A little about me. Had Hep C for over 30 yrs. Treatment in 2007 failed. Changed my view in 2011. 2014 new treatment worked. Free of virus. Now I can extend. Still following my path.

  My you be truly happy.
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: New to forum -- HepC & cryoglobulinemia
« Reply #4 on: September 08, 2014, 02:06:11 pm »
hey auerlian, how you doing, just wondering,i was told to pray for you today so that's what im doin,  God bless you  willie g

Offline Tammra

  • Member
  • Posts: 12
Re: New to forum -- HepC & cryoglobulinemia
« Reply #5 on: September 17, 2014, 05:08:29 pm »
Hi Aurelian,
 I also have cryoglobulinemia. I live in Florida so it has not been a problem for me except at work. I work in a blood bank and when my hands and feet get cold, they ache. Other than that, I have had no problems yet. I just started my sovaldi/olysio treatment today...yay!!! They tell me when the virus is gone, the cryo will go also.
  Just be careful if you ever need a blood transfusion..make sure they use a blood warmer. This condition is also known as "having a cold agglutinin". The cryoglobulins are your antibodies trying to fight the virus. When they get cold..they clump together, or agglutinate.
Hope this helps a little. Stay warm.
Tammy

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: New to forum -- HepC & cryoglobulinemia
« Reply #6 on: September 17, 2014, 06:43:50 pm »
This is strange stuff. I don't have a severe case, but have high cryocrit count, and the darn things are not fighting the virus, but fighting my nervous system. It is an autoimmune issue with me, my rheumatoid factor count is high from it. I have numbness in my feet from it, like a diabetic but I don't have diabetes.
A neurologist diagnosed it and that is why I sought treatment for the hepc.
A reumatologist stated when the treatment is over and the virus gone, the symptoms should leave. Thank God.
I took a blood test the other day, the Reumatoid Factor count went down some.
I am in the 11th week of 24 with Sol/Riba combo.

Offline hlthy8

  • Member
  • Posts: 12
  • Eat Well
Re: New to forum -- HepC & cryoglobulinemia
« Reply #7 on: October 06, 2014, 01:56:35 pm »
I am new on this forum so not sure my last message went through. Lots of good replies on this forum. I have Cryo too and on the OLysio / Sovaldi combo. Dr. says the effects of cryo should diminish as the hep C clears. I hope so. I think you need to get more specific info on type of cryo you have , kidney function and Metavir score.

Offline huxley

  • Member
  • Posts: 4
  • Huxley
Re: New to forum -- HepC & cryoglobulinemia
« Reply #8 on: November 13, 2014, 09:18:04 pm »
I was diagnosed with cryoglobulemia after interferon treatment (non-responder to that) in 1993. A sural nerve biopsy showed vasculitis/cryoglobulinemia. Cold temperatures are hard on this--I have Reynaud's, fingers white and blue and numb. All of this is connected, most likely, to your HCV. I have cryo type II, high level of it from my last bloodtest 2 weeks ago, goes along with RA. It is important that a lab does it correctly. The blood has to be put in a warm bath and a proper procedure followed after the draw to obtain a correct reading. I had red nickel and quarter size spots all over my legs in the beginning. Now, I have larger ulcer-like spots, joint pains, especially after being at work or on my feet. Toes are susceptible as well, black little spots appeared on my. Lovely. I love BC, used to live in Oregon but cold does make it a bit difficult to deal. Email off-line if you have questions. It is an abnormal protein but along with my other issues, the cryo has been a hassle but so far no kidney or bladder problems. Numbness that has become much worse over the 20 years after the sural nerve biopsy --hands and feet. Just my .2 worth.
________________________
Patriotism is  the last refuge
of a scoundrel. Samuel Johnson

 


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