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Brian1412


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RE: It gets stranger...
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No, didn't remove anything that I know of.  I may have posted this before, but in a very round about way, I am back to the original Drs who told me when I woke up, " they  will just get me a transplant. "  So just to see these  "Drs"  again, and I don't want to , I have to wait until  end of oct when I am to return  for "fasting labs " which I have already done.  Then another month  to see the actual specialist.  That pretty much  puts me into the time where the  Health  grant expires .

 

Another  HC advocate site alerted me to  a self pay discount  by labcorp who I am scheduled to retest with Monday , and if positive, they will  do the tests that will tell me the load, type etc .  They significantly reduced the price..  They also told me that having the test for Hep C   at the same time I am getting blood transfusion  it will often come back as reactive. Not sure if that is true .    So Monday I go.   I have to say local for now as far as Drs, but I am doing everything I can  to get someone else.

Hopefully I can get the results soon. This has gone on too long..  I don't have pain much any more, but I feel like crap .   I will post the results  as soon as I get them. I go Monday.

 

TY



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TomF


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Perhaps they got your first set of results mixed up with someone else? 

They didn't remove anything, I hope?



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Tom

HCV GT1a since 1983.  1998 - Interferon/ribavirin null responder.  7 Jul 2014 - started 12 weeks Solvaldi/Oysio, VL 5.5 million.  UND at SOT+4, EOT+4, and EOT+12 weeks.

Brian1412


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PS    I did have a Ultrasound done at the start of this by someone I know and respect, as do his peers.   He was giddy about doing my ultrasound because of my body type and what ever else they are looking at,   he and his colleges were amazed at the images he could get, and he said the liver looked great . I understand there is a another test for that, but he said it was rare to be able to US my body.  He isn't a full of crap guy ...

maybe this is why so slow? still doesn't seem right to me.



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Brian1412


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Ok  here is where I am.  I have resolved the insurance issue .   I am already having something doubts .  Here is their schedule that they proposed 

 

Fasting labs 10-30-14  (  which already tells me  where this is going)  referral  pending and they want to redo the actual test which if reaction is there , then referral for typing  etc    I am pretty sure I know the answer to this one, but please all the ammo  that you knowledgeable people have  , I need it to blast what I think is moronic

 

Slower is faster? That just cant be right.  Right?

 

 



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Brian1412


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Yup,

 

setting it up/ Should get in soon 

 

Thank you 

 

B



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Huey


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I am in Cincinnati,, Tri-Health Digestive institution , Dr, Nav Grandhi,  This is the Go TO guy in cincinnati.  



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Brian1412


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I am so thankfull for all of you..  

It got stranger again( to me) but maybe it will make some sense to you all. I hope so because it is driving me batty.

 

as I first posted, this all was discovered when I almost bled out  from 2 ulcers..  In the lab results for that procedure, is when  I was informed by the "Dr" that I had a positive Hep C  test. the first blood work during that procedure  my labs had my ATL and AST as follows( along with the reactive Hep C test 

 

 

AST= 185  at 5:00 pm  the AST was  176 and at 11:34  pm my AST  229

 

ALT  same time time sequence 370, ,283,384

 

this last weekend, I was having alot of pain in my right side, near the Gall bladder etc. I could feel it in my back, and in my lower right side.  It was pretty severe. I went to the ER, the same place that did the first tests

They did a set of labs  and  there was neg Hep C test, and my ALT were as follows

ALT 63    AST   57 no reaction to the hep tests

 

I also went to get copies of the Lab reports, and none of them mentioned the Hep C reaction . It was in what they gave me originally, but not in the "copies" of the reports I picked up .

The tried to send me to the same Dr  they initially gave me and I refused. My years of TC cancer support gave me the gift of spotting bad Drs from 100 miles.  This " Dr " Lady told me on waking up from the original procedure said" well, we will just get you a transplant" which is why I dumped them.  There was no basis for that type of statement .

I believe I also posted that I had a lab at a private  , rep facility, and they too found no positive test.  So I think it is best that I follow your advice and proceed with the trip to Ohio. The Dr there is a major presence with the new treatments, including those with Hep C/HIV  which I don't have but he is on the A-Team  with what and how the new meds work, and are working very well as compared to not long ago. He said there is much more help coming to those with this disease.   He will do me right, and he knows my work with Testicular Cancer support, if anyone here needs this type of expertise, he will be available to the forum if you think it would be helpfull  or  usefull I can arrainge it. 

He too is stunned by my experience, but says it is more common than not. 

I also appolgise for the couple of posts I have made about the ACA. I am 100 % in support of healthcare for everyone,but as the Healthcare system I had to use this weekend,  was the Model for it. First time I got really bad Drs, this time, people who really cared, yet at the end, they end up try to get me to go to them again.  NO WAY ! somewhere, someone, altered  the original report .

 

That is disturbing 

 

So I have no idea is i have Hep C or not, but will assume so until told by an expert no.   The ALT and AST numbers are about the same as when I would go to the ER and they would tell me, it is the Gall Bladder, and you have slightly elevated live tests.  Again, over 18 times in 2 years.....

One question, is there any significance to the labs from last Friday? ( ALT, AST? ) as again, as long as i can remember, these are slightly elevated  but the swing seems to be a big one. 

Thank you all for listening 

 

 

 



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pizzacake


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Brian, 

You were right to post to this list! You simply must see a doctor (Gastroenterologist or Hepatologist)!

 

I am stunned by the misinformation out there! 

 

 



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Age: 62, Lived with Hep C since 1971 (Sharing infected needles)

Home: USA, Pacific NW

Genotype: 1A

Fibrosure stage:  F3-F4

Begin 3-month treatment June 24: Sofosbuvir, Ribavirin, and Interferon

Born in the Year of the Dragon. 

 
Brian1412


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Cincinnati may be  something I would do if I have to.  I have many medical friends at UC, OSU and the Cleveland clinic.  If it comes to that, I will. I did the same thing when I had Cancer .  I will probably have to hold off until OCT anyway, as that is supposedly when I get a Dr.  I am not banking  on that so I have been in contact with U of Miami which does have some excellent people for Hep.  I do not have any options right now as far as an alternate insurance policy.  I was forced to change my companies policy to comply for the  Healthcare law.  Shame as the policy was EXCELLENT  One I have now, could get better coverage  from the Walgreens . It is like one and the same

So, I am reading a lot ( have been following the evolution of the treatments as a matter  of interest. I have been interested in Botechs etc. Medicine right now is at the point  invention of electricity. The technology and the completion of the Gnome is amazing and I have found the studies of Hep Treatment to be part of that huge advancement .

 

 I am having severe issues with my stomach. as a reminder, I found out about the Hep when I had massive bleeding from an ulcer.  I am taking 150 zantac which helps, but I still feel there is another underlying issue to all of that. I get periods of extreme Fatigue , but I am pretty active physically. I walk a lot so everything else is in good shape.

 

I am first in to the private lab, so hopefully in the next few days . Be certain I will post them immediately

Again, I thank you all for your support and info.

Brian



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Huey


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Brian1412 wrote:

  OH & Florida..  I am sure nothing good about the Florida part .   I am arraigning a private  lab test from a Dr  who only does Labs .  He understands what we are looking for  and will get it.. Nice guy who understands how important this is.   I am doing all tests that you all mentioned in the posts yesterday and last night.

Hopefully tomorrow

 

 

 I am in Cincy,,, The health care i get is not like that at all// Go with Tri-Health that Neighbourhood outfit is for the byrds!

around here most ppl have geno type 1a most likely that is what you have, If so , you won't to hold off till after oct to treat, the S/L combo has wonderful SVR rates.It will be out then/no side effects to speek of.



-- Edited by Huey on Tuesday 15th of July 2014 09:58:56 PM

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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Brian1412


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  OH & Florida..  I am sure nothing good about the Florida part .   I am arraigning a private  lab test from a Dr  who only does Labs .  He understands what we are looking for  and will get it.. Nice guy who understands how important this is.   I am doing all tests that you all mentioned in the posts yesterday and last night.

Hopefully tomorrow

 

 



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Huey


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Where are you , you can not know for cretin what your genotype may be without a test but your location can give you a clue as to what it most likely is . The genotypes tend to concentrate in one area of population, for instance USA mostly have genotype 1 a or b .



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Brian1412


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 I have accepted that I most likely have Hep C . I may have missed in typing, but  Hep A-B did NOT react.

 

The healthcare system that I have, was one of the models for the The new National healthcare.  I can not say any more about it other than  it is not operating on any level that anyone would consider Patient Care.  For now I am stuck with it and will have to order the labs myself .   I appreciate the responses and great information  on what to do right now .. I think the tests would be a good place to start. I cannot wait until end of October nor will I.



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mallani


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Hi Brian,

You have the HepC antibody, but that does not mean you have active HepC. With your high AST and ALT it is likely.

You need to find a doctor to order a Viral Load test, and if positive, find out your genotype. Also get your LFT's repeated.

It's not unusual to find doctors with little knowledge of HepC. Let us know the results.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Hi Brian,

You simply must see a doctor (Gastroenterologist or Hepatologist) that is willing to provide you the appropriate tests needed to determine what's going on. The fact that you are positive for HCV AB's only means you are positive for the antibodies. That means you were exposed to the virus at one time. You need a RNA viral load with genotype test to determine if you have an active infection. Just because you are positive for the antibodies doesn't mean you have an active infection. Some people are able to clear the infection on their own during the acute phase of the infection. 75% of the people exposed will usually go on to the chronic (long term) phase of the infection, but only proper tests can determine that. It's also good to have your liver enzymes tested, which provide the AST/ALT results, and a CBC. Those three tests will provide you with most of the information required to determine where you are right now. It would be enough for us to provide a better informed opinion. Good luck...

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Fireman Rob


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Hi Brian,

Unfortunately there are a lot of doctors out there that don't care about their patients. I would personally start by getting a doctor that you feel comfortable with and having them reorder a HCV PQN test with a CMP test to see if you have a chronic and/or have an active Hep C infection. The CMP will show you if your AST/ALT has gone down or not. If the first test comes back with a viral load, get a genotype test ASAP. 

With those high LFT's from before, the likelihood of you having a chronic infection is high. It's real life accounts like this that make my blood boil.

With the new treatment options coming available, it will likely take you until late fall to get where you need to be for meds from here.

Keep us posted and good luck!

-Rob



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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

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Josh Haynie


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 I would go to your doctor or care provider may not even need an apointment call your doctors office and have them set up a blood draw from the blood lab next door....

 

they take like 4 or 5 little vial of your blood from a vein takes like 1 minuet .... ask for rainbow pack or hepc viral load test...

 

thatll do it ... if you dont know your genotype id ask for a genotype test too....

 

in short id say request a blood test for further proof of the situation....  at your leisure....itll happen when you make it happen :) bug your doctor or receptionist

 



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genotype 1  HCV 4,958,318 iu/ml    HCV Log updated soon  iu/ml------5'10 135lbs 9-15-83  genotype 1 since 2002----Pendleton,Oregon
Huey


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When I first started getting sick, I was going to a neighbourhood clinic and the doctors were not the best,, They swore I was a alcoholic /  I was not drinking at all at the time. I had been too sick.  

 

here is what i read into it, the doctors are given a guidance to follow and this guidance is what makes the insurance co. get to take the cheep way out .  It is supposed to be fair but I myself dont think it is.  So I guess what I am saying is it is time for a new Doctor.  If you are with the HealthDecheepa then switch to HealthNewProgram.  Different system and probably one you will like and can figure out how to get what you need, aww



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Brian1412


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Hi All,

 

I have been busy trying to get the story of my diagnoses  and this is something I have never really encountered.  Aft about a month, I have had no success in getting a Dr. Some of it is Insurance issues, others it is system.

 

I was able to get the reports today..  Besides the bleeding ulcer I had,  it seems they did a hep  test because of my very high AST which were  185, 176 227.  My alt was 310, 283, 384 everything else in range   The report on the virology test  Has  Hep B etc was non reactive . Hep C  ab was reactive.

 

The Dr who was present at the ER that day, said as I woke up from the ulcer check that" I had Hepitis C and I had a really bad kind."  She said " I could just get a transplant"  if it was worse than she was saying.   Now that I see the  records, I wonder  where in that information  did she get that?

 

In speaking with her, she gave no other indication  for her statements..  The other part is that nobody is in any hurry, or concerned to where I would go and have it typed etc.  Quite the opposite.. The other thing, is I have had some form of this with my gall bladder, was tested every single time for hep, function etc.   Never a positive test.   I am talking 20-30 times over some years.

So, I guess one of my questions is what should I do?   Get a private test?  Is it ok to wait 3 months to type it, or make sure the test, or read is right?   I understand the "nature" of Hep, but still, shouldn't this be looked at by now?

 

I am having some pain on my right side, and I have a pretty bad eating issue because of my  tummy.  I do not have the energy I did 4 months ago.  etc.

 

A little direction would be appreciated. .. I also have some time going in to slow season for me workwise.. Looking at various scenarios in treatment,  I would sure like to keep my employees  going you know?

 

Thanks for listening and I appreciate any advice .

 

 

Brian

 



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