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Author Topic: Help positive for antibodies  (Read 14676 times)

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Offline Nervous24

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Help positive for antibodies
« on: July 05, 2016, 12:08:03 pm »
Hello - I tested positive for antibodies through a blood transfusion when I was younger. My main concern at this moment is my children. My son just tested positive for antibodies and will be going to get further testing. How often does the virus still show active in the system with children who developed from birth? Very nervous for my children - they are my main concern and feel terrible that may have this because of me!!! help!!! : (

Offline Lynn K

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Re: Help positive for antibodies
« Reply #1 on: July 05, 2016, 12:58:33 pm »
Were you ever tested for the hep c virus itself? Having antibodies only means you were exposed but unless you are tested for the presence of the hep c virus with the HCV RNA by PCR test you may not have hep c and therefore nothing to transmit.

Antibodies are not the virus they were made by your body when it tries to fight the virus. Antibodies are you. For example if you ever had the measles vaccine or had the measles you would text positive to measles antibodies again made by your own body to defend against measels infection.

However in the case of hep c antibodies they are not effective in combating the hep c virus like measles antibodies are able to defend against the measles. If they were they could develop a vaccine for hep c which so far they have not been able to do as they have for many viral illnesses like the measles.

Were you tested for the virus with the HCV RNA by PCR test? That test did not exist back when I was first diagnosed 37 years ago so it may have been the same for you depending on how long ago this happened. Have you been diagnosed with hep c not just having hep c antibodies? How are your liver enzyme test results (ALT and AST) are they normal or slightly elevated? Have you ever treated for hep c?

If you have hep c virus(not just antibodies) there are new treatments that can be as simple as one pill a day for 12 weeks which for most have minimal side effects and can cure hep c in over 95% of patients in most cases. However, for those like myself even though I am now cured of hep c I will test positive for antibodies to hep c for the rest of my life but not for the hep c virus. I am cured and have no virus to transmit to anyone.

Just to add the odds of your child contracting hep c from a mother who is infected with hep c during birth is about 5% and the odds of household transmission is almost non existent.

I found this artical about children and hep c from what I read it looks like antibodies could stay in the blood for up to 18 months post birth

http://www.liverfoundation.org/chapters/rockymountain/doctorsnotes/pediatrichcv/

Hepatitis C in Children
Author: Michael R. Narkewicz MD

Hepatitis C infection (HCV) is a chronic viral infection of the liver that affects upwards of 1-2 percent of adults. Fortunately, in children and adolescents, hepatitis C is less common, but it remains a significant health issue. In this article I will address the most common questions about hepatitis C in children and adolescents.

What is the frequency of HCV in children and adolescents?

HCV occurs in about 0.15% of 6-11 year olds and 0.4% of 12-19 year olds. It is estimated that there are 23,000 to 46,000 children in the US with HCV

How do children acquire HCV?

Most children are infected with HCV at birth. This is called vertical transmission of infection (from mother to child). If a mother has HCV, her child has a 1 in 20 chance of becoming infected at birth. The higher the viral load in the mother the higher the risk of infection. To date, interventions at birth such as C-section delivery have not been shown to alter the risk of infection at birth.

Adolescents acquire HCV in ways similar to adults by engaging in behaviors that increase their risk of blood exposure, such as IV drug use, sharing needles and high-risk sexual behaviors.

How do you diagnose HCV in children?

In children over 2 years of age, HCV is diagnosed by testing similar to that used in adults. If a child or adolescent is suspected of having HCV, initial testing is to screen with an protein in the blood that is made by the body to fight germs such as viruses or bacteria. If the antibody test is positive, infection should be confirmed with a direct viral test like HCV PCR.

In infants born to mothers with HCV, the protein in the blood that is made by the body to fight germs such as viruses or bacteria. Antibodies can be a result of receiving a vaccine or coming into contact with a virus. They protect the body against future infections.');" onmouseout="exit();">antibody test is not useful and can give false positive results. The mother’s HCV antibody crosses the placenta like all antibodies and can stay in the blood of an infant for up to 18 months. Thus you cannot use the anti-HCV antibody test to screen for HCV in infants less than 18 months of age. The American Academy of Pediatrics (AAP) recommends testing with the antibody test at 18 months or later since treatment of HCV is not recommended for infants less than 3 years of age. Many families are anxious about the risk of infection to their child. In that circumstance, we recommend testing with the HCV viral test like the HCV-PCR. This should not be done until at least 3 months of age due to a high rate of temporarily positive tests in infants under 3 months of age. We recommend 2 negative HCV-PCR tests separated by at least 2-3 months to confirm that there is not an infection with the hepatitis C virus.


My personal suggestion is for both of you is get tested, get treated, and get cured. If he is very young he may need to wait until he is older for treatment.

Why was he tested for hep c? That does not seem like it is a routing test for children that I am aware of

Best to you both don't worry everything will be fine it just may take time to get there
Lynn
« Last Edit: July 05, 2016, 01:01:49 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #2 on: July 05, 2016, 01:28:29 pm »
Lynn.. Thank you so much for responding and I am very happy to hear you cleared the virus. No I have never been tested to see if I am active. I was told you probably cleared the virus and kind of put it in the back of my mind. I would have been exposed about 26 years ago but to be honest it has always haunted me. What if they were wrong, but most of all my kids!! I had my son tested because of this worry and every time he gets sick. I have let my mind go crazy and think what if it's because of Hep C and me!! He is getting tested today to see if he is active / viral load. Like I said my main concern is to first make sure my kids are ok - then if need be I will go from there to check on myself.  I did have a surgery about 3 years ago and they did a scope to look at my liver and at the time - it was stated I had the best liver they seen all week. So that made me further put it out of mind. I just need to know especially for my kids one way or another. Either to have peace of mind or get treated...

Offline Lynn K

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Re: Help positive for antibodies
« Reply #3 on: July 05, 2016, 01:51:21 pm »
The term "active" was used back in the day and was king of a misnomer.  If you have the virus it is active it never truly sleeps. It slowly does damage over many decades. If you did not have the test for the virus I urge you to get tested for the virus itself not just the antibody test to make sure you do not have the hep c virus.

The only way to know if you have the virus if you have a positive test for hep c antibodies is to have the HCV RNA by PCR test.

Active used to mean the virus was attacking the liver when the person has elevated liver enzymes and not active when there was no elevation in liver enzymes. But in both cases there was virus present.

Anyway times have changed so much in hep c as I said back when I was diagnosed there was no test for the virus. I was diagnosed on the basis of a positive antibody test and elevated liver enzymes alone.

Only about 20% of people with hep c over 20 years of infection will develop cirrhosis it too me 30 years of being infected before I was diagnosed with cirrhosis.

Having a healthy liver does not mean you do not have hep c, having normal liver enzymes does not mean you don't have hep c. Having a positive antibody test does not mean you do have hep c.

The only way to know is to have the test for the hep c virus.

Good luck
« Last Edit: July 05, 2016, 01:52:59 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #4 on: July 05, 2016, 02:06:12 pm »
Thank you so much for all the info. Hopefully my son's results will come back good and if not we will go from there. Trying to have positive thoughts. Again so glad that you are virus free. It truly gives me hope that if the results come back bad there is hope to be cleared.

It's great that you are still trying to help people with the questions / concerns they may have.

Offline Lynn K

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Re: Help positive for antibodies
« Reply #5 on: July 05, 2016, 02:19:51 pm »
Just to add if you do not have the hep c virus and only antibodies he cannot have gotten hep c from you because you don't have hep c.

I hope you will be getting the test for the virus to make sure you do not have hep c. Thousands who were not able to be cured in the past are now being cured. With testing and treating with these new medicines only approved in the last few years we may be able to eridicated the hep c virus completely
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #6 on: July 05, 2016, 02:35:29 pm »
Yes I will... I just want to make sure that my kids are ok first. I will reach back out to you once we receive results. I hope that's ok? Just having someone to talk to- means a lot.

Offline Lynn K

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Re: Help positive for antibodies
« Reply #7 on: July 05, 2016, 05:06:24 pm »
Sure thing no worries that is what we are here for :)

Hoping all the news is good and please let us know

Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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  • Posts: 21
Re: Help positive for antibodies
« Reply #8 on: July 13, 2016, 10:16:16 am »
Lynn..
My son just went in today for the HCV RNA testing being he started a new job. When he spoke with lady drawing his blood - he had asked if he was "active" for the virus. This was not the ladies we both spoke to on the first visit.

The nurse he spoke with today said "yes" you are active, we are doing test now to determine what to give the liver specialist. I am kind of confused by this. When I spoke with them on the phone after antibody test, I was told they made an appt for liver specialist and would determine if they kept the appt- based on what the RNA test showed being the first test was just for antibodies.

So was this lady wrong in assuming that the virus is still there or would there have been another test- that I was not told about? That could determine this- besides the one he did today?

Also he did not ask how long to get the results. Can you tell me how many days  until I hear something back??  Thank you!




Offline Lynn K

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Re: Help positive for antibodies
« Reply #9 on: July 13, 2016, 01:32:58 pm »
Lab technicians are not doctors and again saying active is not correct terminology. Either you have the virus or you do not which will be determined by the HCV RNA test.

All you know right now based on what you have said is he is positive for hep c antibodies which means he was once exposed nothing more. It does not prove he is currently infected with the hep c virus.

Say for example you had either the measles or the measles vaccine either way you test positive for measles antibodies. But you only have a measles infection if the measles virus is in your blood. In the case of measles antibodies they protect you from being infected by the measles virus in the future. That is what antibodies as part of your immune system do is protect against a viral infection. Unfortunately the hep c virus does not work that way and our bodies cannot successfully fight hep c infection about 75% of the time so the antibodies we make are not very effective in fighting off the hep c virus. If we could develop effective antibodies to hep c the doctors could create a vaccine  like they have done with the measles and other illnesses but so far they have not been able to develop a vaccine to hep c.

The antibody test is only a screening test to see if you were at sometime in your life ever exposed to the hep c virus. As I said before about 25% of people who were exposed beat the virus on their own the remaining 75% go on to be chronic carriers and will need treatment to rid the virus from their bodies. Those of us here who were cured by the new medicines will test positive for hep c antibodies for the rest of our lives just like we will test positive for measles antibodies but we are no longer infected with hep c as our HCV RNA tests have the result Not Detected.

They do the antibody screening test  because it is faster and less expensive and most people will test negative. Then if a person tests positive they go to the next level of disgnostic testing the HCV RNA test which I believe the labs charge insurance about $400.00 that is why that test is not done upfront as for most people it is not needed just those who have tested positive for hep c antibodies.

The only way to know if you are currently infected with the hep c virus is to have the HCV RNA test this looks for the hep c virus itself.

That test takes about 7 to 10 days on average to get the results back.

Good luck hope you have favorable results
Lynn
« Last Edit: July 13, 2016, 01:39:27 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #10 on: July 13, 2016, 02:40:21 pm »
Thank you...

Sorry, new to the correct terms to use. I thought I was correct in the assumption that the nurse could not make that statement with out the test / results that were done today!

Thanks Again for your time!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #11 on: August 01, 2016, 01:23:42 pm »
Lynn- I need your help please.
I called to get my sons results on blood work and he has the infection.

Offline Lynn K

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Re: Help positive for antibodies
« Reply #12 on: August 01, 2016, 01:31:30 pm »
So this was the test for the virus the HCV RNA by PCR? Did they tell you his viral load and will they be testing for his genotype next or have they already done that test?

Really surprised it took this long for the results 17 days and you had to call for the results when they should have contacted you asap. Are you sure they were not just reporting the original positive for antibodies?

I would call again and ask these questions. Especially if it was the HCV RNA test they will have his viral load result.

How old is your son?
« Last Edit: August 01, 2016, 02:11:22 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #13 on: August 01, 2016, 01:39:33 pm »
Yes ma'am...

They told me the viral load was high- 7287272 but not sure where decimal point goes or how to read that number. She said that they don't think he got it from birth because the viral load was so high?? Which makes no since to me? Something went wrong with the genotype test- so it will have to be done again. They also gave me a number of 6.84 - do you know what this might be? They said they are not experts and the specialist will be able to explain all of these numbers.

He goes to specialist next week. He is 18. I am getting my daughter tested also.

My head is just spinning...

Offline Lynn K

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Re: Help positive for antibodies
« Reply #14 on: August 01, 2016, 02:03:01 pm »
Okay the first number 7,287,272 IU/mL or 7 million, 287 thousand, 272  international units per milliliter of blood. The other number 6.84 log 10 IU/mL is the same exact number expressed on a different mathematical scale called the logarithmic scale it is a way scientists like to look at very large quanties of things vs the 7 million number. But that number has no significance beyond it means he does have the virus otherwise it is meaningless. His viral load is NOT the highest I have ever seen on the forum. Also viral load varies all the time.

Since he is 18 he can be treated with the new meds which have a very high cure rate and are not like the old treatments they are much better tolerated and no shots.

His treatment could be as simple as 1 pill a day for 12 weeks depending on his genotype. But whichever med he takes the odds are excellent he will be cured.

About the whether he had from birth or not, I am not aware of any relation to viral load and having from birth or not. If he has a different genotype than you had that would definitely mean he did not get from you but genotype 1a is the most common in the US so beyond my knowledge to answer maybe his specialist will know more about that. But really that does not matter the only thing that matters is he is treated and cured how he became infected is of no importance.

Really this is just a bump in the road a big one but believe it everything will be ok
« Last Edit: August 01, 2016, 02:10:29 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #15 on: August 01, 2016, 02:18:11 pm »
Just not sure how to handle all of this...

I have read a lot of post about having to have a higher Firbo scan before they would treat? Most of the post about that were 2014 to 2015 so not sure if that is still the case. I just want my son to be ok and for this to be gone.. Does the child have to be 18 to be treated, being my other child is only 16.

So you think them saying that it was a recent infection because of viral load being so high is not a accurate statement? If I understand you correctly.

Offline Lynn K

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Re: Help positive for antibodies
« Reply #16 on: August 01, 2016, 02:30:01 pm »
I have no information of a relationship between viral load and duration of infection. What I can say was I was infected for 37 years and my pre treatment viral load was 2.4 million (2,422,260) and my log base 10 was 6.384.

I think they are nurses and working in a general practice office so may not be up to speed on all things hep c.

I have heard that if the patient is a child they might need to wait but not up to speed on that but as he is an adult at 18 not an issue and the other being 16 that would be for your doctor to answer. I read back and saw I asked if you have ever been tested for the virus itself like your son just was did you ever have that test done? Back in the day there was no test for the virus itself like there was back when you tested positive for antibodies. I would get yourself tested too if you have not been.

Previously yes many were having trouble getting treatment due to high cost if the patient does not have liver damage. But that has been improving and can be appealed as needed to your state medical insurance board many are getting treated on appeal and many are just getting to meds now without problems. But one thing at a time don't borrow trouble that has yet to come
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #17 on: August 01, 2016, 03:03:36 pm »
No - I have only had the anti-body test.
I will ask to get the remaining test when I take my daughter.

My mainconcern is to get my son healed and my daughter if she would also have it.
Then I will worry about my treatment if I need to.

It's hard for me to worry about myself when it's my fault my son has to go through this. I still have a hard time with how I was exposed to the virus in the first place. I went to the hospital at 13 years old to save my life and had to have  4 pints of blood. Which from what I read was about 5 to 6 months before they started testing for it.. 

Just a hard thing to swallow that one day has caused this to myself and my child and possibly my other...

I am so glad that there are options now and so many have been healed. It gives me hope for my children and myself. It's just hard as a mother to know I gave this to them and how do you get passed that? They mean the world to me!


Offline Lynn K

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Re: Help positive for antibodies
« Reply #18 on: August 01, 2016, 03:13:04 pm »
Well first of all it is not your fault you did not know and were told not to worry with what they knew at that time. Besides had you not received thr transfusion you would have died and your kids would not have been born.

Also at this point you don't even know if you did pass hep c to your kids.

There is no point in looking at how you got here the point now is to move forward from where you are. Also I recommend you treat with your son and if needed your daughter so there will be no risk in that way of any chance to reinfect one another although household transmission is very very low

Best too you all
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #19 on: August 01, 2016, 10:48:49 pm »
Thank you Lynn for being there and helping me through this.

Sorry... I was just having a little bit of a melt down earlier.

Offline Lynn K

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Re: Help positive for antibodies
« Reply #20 on: August 01, 2016, 11:18:06 pm »
No worries  ;)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Scoutdoy

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Re: Help positive for antibodies
« Reply #21 on: August 01, 2016, 11:28:42 pm »
Nervous 24,,,,take a deep breath. The viral load number does not indicate the strength of the virus or any damage it has done to the liver. It's just a number the doctor will use to determine the length of treatment. Use my numbers for example...13.9 million...but absolutely no damage to my liver...and insurance paid for Harvoni treatment on the first request. I am now hep free. Don't let the stygma and misinformation throw you into a tizzy. It is 2016 not 1995. There is a cure and you will all come through this ok.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #22 on: August 01, 2016, 11:52:47 pm »
Thank you Scout!! I am trying my best to relax..

I'm so glad to hear you are free from the virus as well!!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #23 on: August 08, 2016, 10:42:32 am »
Lynn,

I just received a phone call for mine and my daughter results.
Some wonderful news my daughter is negative (no antibodies) but of course I am postitive- which I expected.

My viral load was 3mil. Please keep us in your thoughts that everything will work out for starting medication as soon as possible... Thanks again for your help with this journey!!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #24 on: August 08, 2016, 12:24:23 pm »
That's very nice of you... We go this week to a specialist and not even sure what medication the doctor will prescribe yet or how many weeks. I hoping for Harvoni being it seems like it would be the easiest and from what I have read so far - less side effects but I am completely new to all of this..

I so happy to hear you cleared the virus!!

Offline Lynn K

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Re: Help positive for antibodies
« Reply #25 on: August 08, 2016, 01:18:38 pm »
Prior post deleted attempting to give away meds which is against federal law
« Last Edit: August 08, 2016, 01:21:34 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lynn K

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Re: Help positive for antibodies
« Reply #26 on: August 08, 2016, 01:28:42 pm »
Hi Nervous

So glad to hear your daughter is clear that is great news!

Good luck on the rest of your journey to good health :)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #27 on: September 01, 2016, 04:06:48 pm »
Hello Lynn...

My son and I got back from an appt with specialist. In which last appt did more blood work. My son's viral load was 7mil last time and was 4mil this time- fibroscore between F1-F2. We still don't know are Genotype - it says pending? Not sure why?

My results- my viral load was 3mil last time and now 1.2 mil. My fibroscore was F0.

He does not want to see us till 6months and will repeat blood work and do another fibroscore for my son. .. To see if he is close to where the doctor can plead for medication.. My son's liver enzymes were elevated but mine are normal...

Crazy that I have had this longer but my son score's are worse.. Not sure why it is so hard to figure out the genotype for us? Have you heard of this?

Offline Scoutdoy

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Re: Help positive for antibodies
« Reply #28 on: September 01, 2016, 04:12:40 pm »
Wanting to wait to see you and your son in six months is unacceptable...you should tell them that and get them rolling to get the medicine to rid you of this nasty virus...the sooner the better


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #29 on: September 01, 2016, 05:43:11 pm »
Trust me Scout- I want nothing more then to have all of this done and over with.. From what I understand my doctors hands are tied. It is insurance that won't let us get meds until fibroscore  of F3 -F4...  Basically have to wait till we are worse to be able to get meds. It's sad that you almost hope your scores are worse at your visit in order to be cleared of this awful virus... I think the doctor is hoping maybe my sons will be borderline next visit - so he has something to fight for in order to get meds.. With me only being F0 who knows when I would be able to get meds...

He did say things are changing quickly and the longer the meds are out, they will get cheaper and some of the guidelines may change..

Offline Scoutdoy

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Re: Help positive for antibodies
« Reply #30 on: September 01, 2016, 05:53:11 pm »
Appeal the decision...yes it works. A lot of doctors don't even realize that the initial rejection is almost like auto rejection...with the same ..."your not sick enough"letter....but as soon as you appeal it..they have to actually look at your cases. Look through this forum and see how many people were initially rejected. There are thousands...they appealed...they won...and now are virus free...it happens...but don't let an initial rejection or an inexperienced doctor just put you on the backburner...you have to be in charge of your own health, and recovery....and appeals are just a matter of saying to your insurance company...I have this virus...there is a cure...and I demand to get it! Period!


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Lynn K

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Re: Help positive for antibodies
« Reply #31 on: September 01, 2016, 07:20:38 pm »
You do NOT want to wait until you have liver cirrhosis (F4) or near liver cirrhosis (F3) trust me on that one.

For most people it takes decades of infection if at all to progress from F0 for you or your sons F1-F2.

You need to be treated before signification liver damage has occurred.

Many here were treated at F1 and F2. The process begins with your doctor prescribing treatment and it is up to your insurance to decide if they will approve. Many insurances have moved away from only treating people with border line or full cirrhosis.

The only way to find out is to submit a prescription to them not assume they wont provide.

Even if they disapprove then your doctor will appeal. After 3 denials you can appeal to your states insurance commissioner. There are also some groups who can help you get medicine as well as purchasing overseas which some here have done. Others know more about that process.

But first up is make your insurance do their job and provide medicine to treat their customer YOU! You or your employer pay for insurance their job is to provide treatment.

If your doctor is unwilling to appeal to your insurance you need to get a different doctor who is willing to help you through the appeals process.

Bottom line there are ways to get treatment but do not take no or wait for an answer.

Can't speak to why the delay in genotype testing that needs to come back to know what treatment is best. What type of doctor are you seeing? What insurance do you have?

Best of luck,
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #32 on: September 01, 2016, 07:42:01 pm »
I am seeing an infectious disease Doctor that specializes in Hep C and have United Heathcare insurance through my employer... I can approach all of this on our next appt. and ask him if he would try to prescribe the medication - to at least know what the insurance will say and go from there?

Offline Lynn K

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Re: Help positive for antibodies
« Reply #33 on: September 01, 2016, 08:13:46 pm »
OK yes sounds like the kind of doctor you need to see.

Many here have gotten treatment at less than F3. I would ask him to submit your prescriptions once you know your genotype so you know what is the correct treatment.

If you have a genotype that can be treated with ribavirin (although there are other options for those genotypes) I would try to avoid ribavirin if possible.

But if you have genotype 1 (the most common) the currently recommended treatments per the AASLD are as follows:

note: drug names listed not the trade names i.e Harvoni is called ledipasvir (90 mg)/sofosbuvir (400 mg)


"Genotype 1a Treatment-Naïve Patients Without Cirrhosis - Recommended
Recommended regimens are listed in groups by level of evidence, then alphabetically.
 

    Daily fixed-dose combination of elbasvir (50 mg)/grazoprevir (100 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 1a infection who do not have cirrhosis and in whom no baseline NS5A RAVs§ for elbasvir are detected.
    Rating: Class I, Level A
     
    Daily fixed-dose combination of ledipasvir (90 mg)/sofosbuvir (400 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 1a infection who do not have cirrhosis.
    Rating: Class I, Level A
     
    Daily fixed-dose combination of paritaprevir (150 mg)/ritonavir (100 mg)/ombitasvir (25 mg) plus twice-daily dosed dasabuvir (250 mg) with weight-based ribavirin for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 1a infection who do not have cirrhosis.
    Rating: Class I, Level A
     
    Daily simeprevir (150 mg) plus sofosbuvir (400 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 1a infection who do not have cirrhosis.
    Rating: Class I, Level A
     
    Daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 1a infection who do not have cirrhosis.
    Rating: Class I, Level A
     
    Daily daclatasvir (60 mg*) plus sofosbuvir (400 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 1a infection who do not have cirrhosis.
    Rating: Class I, Level B"
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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  • Posts: 21
Re: Help positive for antibodies
« Reply #34 on: September 01, 2016, 08:22:25 pm »
Thank you both for all the info!!!
I will push this at the next Appt at least for my son... I'm not sure if I would have a leg to stand on at this time... But will have to wait to see what my numbers are then...

Offline Lynn K

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Re: Help positive for antibodies
« Reply #35 on: September 02, 2016, 02:50:51 am »
Your leg is you have hep c you deserve to be treated as much as anyone else who is ill with any medical condition.

There is zero reason to wait until serious liver damage has occurred. Waiting until near cirrhosis only increases length of treatment and reduces the odds of cure.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Scoutdoy

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  • Posts: 452
Re: Help positive for antibodies
« Reply #36 on: September 02, 2016, 09:14:08 am »
I too was told I would not get approved for Harvoni because I was an F-0....but I did get approved. The treatment for me was not bad. I had a few mild headaches, but I wasn't a very big water drinker. Once I started drinking water I felt fine. Actually I felt better than I had in 20 years. I definitely had the Harvoni high. I felt like I was on speed for 11 weeks. Good luck, you will prevail. Most insurance companies that are employer sponsored are approving treatments now.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Nervous24

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  • Posts: 21
Re: Help positive for antibodies
« Reply #37 on: September 02, 2016, 09:37:18 am »
Thank you both for helping me through this process... It can be overwhelming.. I will least be able to go into our next appt with more information about insurances and push for the doctor to sumbit the prescription..

He did give my son some info to help with his elevated liver enzymes. Watching what he ate and also suggested Milk Thistle to help... Any thoughts on milk thistle?

Offline Lynn K

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Re: Help positive for antibodies
« Reply #38 on: September 02, 2016, 01:45:18 pm »
No proven efficacy best thing to improve liver enzymes is cure hep c. Some patients like it never heard of a doctor suggesting an herbal before.

Elevated liver enzymes are evidence that the liver is being injured by something.

Not drinking will help and being cautious with OTC meds like Tylenol but never heard about any dietary suggestions for liver enzymes either.

The cause of his elevated enzymes is hep c the way to improve his tests is to get treated and get cured.
« Last Edit: September 02, 2016, 01:49:39 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Scoutdoy

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Re: Help positive for antibodies
« Reply #39 on: September 02, 2016, 02:21:17 pm »
I have never heard of a hep Doctor ever suggesting milk thistle. I would question the ethics actually of a doctor who does this and who says come back in 6 months when you have employer insurance. Something just doesn't seem right. Nervous, I would make a list of what you want to discuss with your doctor and be persistent...why would you wait for treatment and why would you wait for 6 months for a return visit?

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Help positive for antibodies
« Reply #40 on: September 02, 2016, 06:29:14 pm »
After more thought on this he could be one of those doctors more accepting of alternate medicine or he could be using this to make you feel as though you are doing something while you are waiting for a real and effective treatment. To me that is just a way to stall you.

Even if milk thistle has some value which many doubt why take a second class treatment which does not cure when real medicine is available?

Just my thoughts
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #41 on: March 10, 2017, 06:18:31 pm »
Hello it's been awhile since I posted, but me and my son went for our 6 month check up and the doctor agreed to try and see if my insurance company would approve our meds. I received my phone call today day that I was approved and the medicine will arrive tomorrow!! I am still waiting to hear back about my son ,but I would not think there should be an issue being his  score is between F1-F2 and I am still showing as a F0 and normal liver enzymes. I am beyond excited to start my meds but just want to hear back about my son! Any advice on side effects or what time of day to take the Harvoni..? Thank you!!

Offline Lynn K

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Re: Help positive for antibodies
« Reply #42 on: March 10, 2017, 09:40:55 pm »
 The majority of those treated experience little to no side effects the most common side effects reported is mild headaches.

While there have been several people on the forum who sadly have experienced difficult side effects that is not true for the majority of patients. The main suggestion is to make sure that you remain properly hydrated and drink the recommend amount of fluids every day at least a glasses per day. As far as time for taking your meds some people experience an increase in energy while taking Harvoni so you may want to take earlier in the day. If you find that does not work for you, you can always shift your meds to later in the day.

The most important thing is to try to take your medication as close as  possible to the same time every day although an hour or two on either side really won't make any difference.

 Congrats on being approved and good luck on treatment
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nervous24

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Re: Help positive for antibodies
« Reply #43 on: March 10, 2017, 09:46:00 pm »
Thanks Lynn!! Just want to get the confirmation of approval for my son - then I will be jumping for joy!!

 


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