Author Topic: My Doc Denied Me a 24 week EOT Blood Test. Is that Normal? (Read 35660 times)

Roger · « **on:** July 31, 2015, 01:00:58 pm »

I finished 12 weeks of Harvoni February 12. My doc did a 12 EOT blood test May 7th. All he wanted was a viral load test. I twisted his arm for a complete blood test including a couple of vitamin levels. He thought looking at everything was ridiculous, but humored me and did them at 12 weeks EOT.

I figured that Harvoni is so new and unproven that we should take not on any irregularities that may have occurred. Why not?

July 30th (yesterday) was my 24 weeks EOT mark. I requested a complete blood test to check how things are going, a few weeks ago. My doc flipped out explaining to me that 'I am cured, and that there is no need for a blood test'!

Did you have this type of experience at 24 weeks?

There have been so many "cures" over the years that didn't work, or worked for a while, that Harvoni could easily fall into this category. Who's to say, this early on? Because I (we) am free of the virus at 12 weeks, with a new and unproven drug, who says that all is good in 24 weeks, etc?

I feel that we are prudent having our blood checked for EVERYTHING every 6 months for the next 3 - 5 years. My doc didn't think it was important to even look at my liver function. Told me that if my GP is concerned, let her order the blood test.

Is this normal behavior? I'd like to hear from others who are at or beyond 24 weeks EOT.

KimInTheForest · « **Reply #1 on:** July 31, 2015, 01:08:17 pm »

Hi Roger. I have not yet reached 12 weeks post-EOT. However I can tell you that my liver clinic is going to check my viral load at 12 weeks post-EOT, and also at 24 weeks and then again at 1 year. That is their automatic policy for every Hep C patient they are treating with the new drugs. They don't feel further viral load tests are necessary after 1 year post-tx. And I don't either. But I would absolutely want to have the 24-week post-tx test and the 1-year post-tx test to be sure, and so would my doctor.

I think if your doctor won't at very least give you a 24-week viral load test, you need to find a doctor who will. because that is not an unreasonable request.

Best,
kim

dragonslayer · « **Reply #2 on:** July 31, 2015, 03:55:06 pm »

Yea, Roger, some doctors can be real pricks about testing. Mine, who by no means is a lavish tester and didnt even order an EOT test until I requested it, did the EOT test. Then, because it came back detected had me do another test at 7.5 wks, 12 wks, 24 wks, and he wants me to do another at around 48 wks. They make it very easy for me by mailing/faxing me the lab req, of which I can make copies, and basically test as often as I want simply by bringing the copied lab req to the lab. But Im sticking with his schedule as I think it more than adequate.

Mikee · « **Reply #3 on:** August 03, 2015, 09:48:53 pm »

Roger if you want a blood test im pretty sure you can find a doctor that will give it to you.

Roger · « **Reply #4 on:** August 03, 2015, 10:51:41 pm »

The whole thing is frustrating... The doc knows nothing about Harvoni, yet they "know" I only need a virus check! So many other things might be out of wack, and it's so easy to check. Grrr.....

Mikee · « **Reply #5 on:** August 04, 2015, 11:55:05 am »

Roger, Harvoni is not unproven it went through 3 phases of clinical trials. If you were undetected at 12 weeks the data shows a 99.8 % chance that you're cured. I also had a hard time believing I was cured. You can find doctors to give you any blood test you want, Remember you hire them.

newbie1111 · « **Reply #6 on:** August 06, 2015, 11:30:17 am »

unfortunately i disagree with mikee. Harvoni is so new that it is unproven as to its side effects and long lasting effects on the real world. They show you the cure rates of the clinical trials, all of which is very controlled including their subjects and the ones that they choose for the clinical trials. It is the people that take the drug and report later and maybe much later as to what effects it had on their bodies and none can be taken and thrown wayside. Yes i have heard of doctors not wanting those labs that are regular protocol in the treatment, yes i have heard of doctors not following their own treatment standards, and it is my opinion that that the reason they do not follow their own protocol is so that data and cure rates stay where they want them to be. If you come back detected now, well so much for their cure rate. Well just something we must all think about.

Mikee · « **Reply #7 on:** August 06, 2015, 12:18:52 pm »

Hi Newbie, You're comparing apples to oranges. Im referring to the svr rate which is proven.you're referring to not yet known side effects which are not yet known. I agree with most of what you say. Cheers

Roger · « **Reply #8 on:** August 06, 2015, 12:19:59 pm »

Newbie, I agree and to add to what you said... we do not know what the effects on other parts of our bodies might be with this new "cure". Does it cure the HCV but wipe out our kidneys or eyes? I have had my blood tested regularly for years and never has my thyroid been off... it is now off. Is that"just because", or is that from Harvoni? It's worth following in my opinion - yet my HCV doc wants no part of it.

dragonslayer · « **Reply #9 on:** August 06, 2015, 11:18:18 pm »

Quote from: Roger on August 06, 2015, 12:19:59 pm

Newbie, I agree and to add to what you said... we do not know what the effects on other parts of our bodies might be with this new "cure". Does it cure the HCV but wipe out our kidneys or eyes? I have had my blood tested regularly for years and never has my thyroid been off... it is now off. Is that"just because", or is that from Harvoni? It's worth following in my opinion - yet my HCV doc wants no part of it.

I too, Roger, had my blood tested regularly for years. A couple years back, I started eating salads more regularly... At about that time, I tested with a high TSH for the first time. Lets please remember.... Correlation does not imply Causation.

gug · « **Reply #10 on:** August 07, 2015, 06:02:11 am »

Quote from: Mikee on August 06, 2015, 12:18:52 pm

Hi Newbie, You're comparing apples to oranges. Im referring to the svr rate which is proven.you're referring to not yet known side effects which are not yet known. I agree with most of what you say. Cheers

Mikee is correct. I just finished my 12 week SVR and my Dr. said I am cured. She explained to me that the SVR 24 was only in place from Ribirvirin and the Interferon treatment, being it was so slow acting. She said that Harvoni is quite different and that the 12 week is more than sufficient to determine if you are cured.

I questioned this and she said that all will be measuring it this way in the future (i.e. 12 week SVR). She followed this by telling me that the HCV can replicate at millions a day and that the test verifies to 15 or under. With that said it would be impossible for the virus to be in your system once SVR 12 is completed.

newbie1111 · « **Reply #11 on:** August 07, 2015, 10:18:33 am »

Problem is with all this medication is that it is trial and error, and the only thing the medication is set up to do is interfere with replication at which time the virus has nothing to do but shut down. It is not necessarily a so called cure because the virus can become active in my understanding, and I am sure i will be corrected if I am wrong, at any time. In other words you still carry the HCV P antibody in your body if you have ever had the virus. And relapse is nothing more than the virus becoming active again within your body. I was reading somewhere that it was possible to totally eradicate the virus from your body within 3 years of taking treatment? 3 years? Wow! That is pretty amazing that it may or may not be eradicated from the body all together. Well, sure I agree that the SVR rates are pretty proven in that time frame. My question would be and how long after that will it be the same? I guess we could look at the previous treatment regimens and see in the real world how long those cure rates stood as accurate. I wish you all the best health.

gug · « **Reply #12 on:** August 07, 2015, 11:19:18 am »

Quote from: newbie1111 on August 07, 2015, 10:18:33 am

Problem is with all this medication is that it is trial and error, and the only thing the medication is set up to do is interfere with replication at which time the virus has nothing to do but shut down. It is not necessarily a so called cure because the virus can become active in my understanding, and I am sure i will be corrected if I am wrong, at any time. In other words you still carry the HCV P antibody in your body if you have ever had the virus. And relapse is nothing more than the virus becoming active again within your body. I was reading somewhere that it was possible to totally eradicate the virus from your body within 3 years of taking treatment? 3 years? Wow! That is pretty amazing that it may or may not be eradicated from the body all together. Well, sure I agree that the SVR rates are pretty proven in that time frame. My question would be and how long after that will it be the same? I guess we could look at the previous treatment regimens and see in the real world how long those cure rates stood as accurate. I wish you all the best health.

I would like to know where you got your info on relapse and your understanding of hep c. My Dr. said "verbatim have a nice life". So I know she would disagree with that. I thought I had read pretty extensively on this subject as well for the last couple decades and have never read anywhere what you state. If you have this please provide a reliable source, I will gladly forward this to my Hepatologist.

Roger · « **Reply #13 on:** August 07, 2015, 12:22:19 pm »

I'm not all that convinced that these doc's actually know what they are talking about. Let's not forget that modern medicine does not promote critical thinking, on the behalf of doctors. They do what the drug companies teach them. The salesmen come by frequently to educate them... salesmen! They occasionally go to drug company sponsored conventions / seminars. They are in lock step with whatever the salesmen have told them. Remember the "amazing" Celebrex & Thalidomide? Without putting the doc's ignorance or knowledge to the fire, I just think it is easier and W-A-Y safer to merely have our complete blood panels run every 3 or 4 months for a couple years.

I have seen this same exact situation with cancer... "you are cured" - and then several years later the cancer is back with a vengeance, but because the person took the doc's advice and quit checking his/her blood (remember, he/she was 'cured') when the cancer returned it was too late. The cancer returned sometime 'earlier' and could have been noted if proactive blood testing was in place. It is super easy to keep one's eye on their health through routine blood tests. Then there is no guess work. These doc's are constantly "treating" problems, rather than being proactive.

Mikee · « **Reply #14 on:** August 07, 2015, 02:46:46 pm »

Roger , Think positive ! Do you know the difference between clearing a virus and being in remission from Cancer ? Find a different Doc and get anything tested you want. Also in that circle of Drug salesman and Des there is also the FDA highly regulating everything.

kate0b1 · « **Reply #15 on:** August 09, 2015, 08:43:21 am »

Roger, can you ask your primary MD? my GI guy and I broke up when i was "cured" lol, but i plan to ask my primary for a 24 week test the end of this month so i can feed my OCD lol, my doc knows me very well so I'm pretty sure he's expecting to me in a week or two.

kate

Roger · « **Reply #16 on:** August 09, 2015, 01:30:17 pm »

Yes I can ask my GP - but that is my point...

Why should I have to? My Gastro doc is taking care of my HCV which includes my body in general when it comes to this new drug Harvoni that he prescribed. With HCV my liver took a toll, and so did my only kidney possibly. Shouldn't we follow those organs especially when taking an unproven new drug like Harvoni?

Why should we have to go to doc #1 (gastro) for a viral blood count test only- take the time to do so, wait, pay any copays of deductibles that go along with it and so on; then have to make 'another' appointment, drive, wait, pay another fee or two and get another needle poked into our arm, etc - when it can/could be done in one visit with the doc who is "suppose" to be watching for the effects of Harvoni?

And this is the doc (gastro) who is always talking about saving the insurance industry money! It boggles my mind that this happens.

Mikee · « **Reply #17 on:** August 09, 2015, 02:07:30 pm »

Roger, Now that im cured, Im like Kate I guess I broke up with my Hepatologist. Im not a liver patient anymore! YIPPEE !!!!!!!!

dragonslayer · « **Reply #18 on:** August 09, 2015, 02:38:42 pm »

Quote from: Roger on August 09, 2015, 01:30:17 pm

Yes I can ask my GP - but that is my point...

Why should I have to? My Gastro doc is taking care of my HCV which includes my body in general when it comes to this new drug Harvoni that he prescribed. With HCV my liver took a toll, and so did my only kidney possibly. Shouldn't we follow those organs especially when taking an unproven new drug like Harvoni?

Why should we have to go to doc #1 (gastro) for a viral blood count test only- take the time to do so, wait, pay any copays of deductibles that go along with it and so on; then have to make 'another' appointment, drive, wait, pay another fee or two and get another needle poked into our arm, etc - when it can/could be done in one visit with the doc who is "suppose" to be watching for the effects of Harvoni?

And this is the doc (gastro) who is always talking about saving the insurance industry money! It boggles my mind that this happens.

Roger, I dont think you can impugn all gastros and hepatologists based on your lousy experience.. You have a sucky doctor.. Like all professions, there are good ones and lousy ones. Changing doctors can be a pain, but if you're that dissatisfied, just change. Last year, I wasnt thrilled with my pcp so I changed.. Much happier now. It sure beats being constantly pissed off about him.. They generally wont change, so you have to... Best of luck..

nicole_1234 · « **Reply #19 on:** August 12, 2015, 04:41:45 am »

They are doing the same full blood work ups as on treatment for me as well as viral load at 6, 12, 18 and 24 post treatment. so far I've been clear on all and normal blood work.

Tomorrow I go in for my last test 24 week EOT. I am 99.8% sure I'm still clear but every time I have to take a test I get nervous. Like some others on this forum I have trouble trusting my doctors.

But once I get this test back I'm going to try really hard to put this all behind me. I also have a fibrosure test in September to check on my liver so that will be another path to cross. I didn't check it before treatment although my doctor said there's no way I could have cirrhosis based on blood tests but others have told me that's not true. I feel pretty great though so I'm confident that I'm in good shape now . I look forward to the day when there is no more tests in my future, at least for a while.

Downnout · « **Reply #20 on:** August 12, 2015, 07:25:57 pm »

Quote from: gug on August 07, 2015, 06:02:11 am

Mikee is correct. I just finished my 12 week SVR and my Dr. said I am cured. She explained to me that the SVR 24 was only in place from Ribirvirin and the Interferon treatment, being it was so slow acting. She said that Harvoni is quite different and that the 12 week is more than sufficient to determine if you are cured.

I questioned this and she said that all will be measuring it this way in the future (i.e. 12 week SVR). She followed this by telling me that the HCV can replicate at millions a day and that the test verifies to 15 or under. With that said it would be impossible for the virus to be in your system once SVR 12 is completed.

I may be wrong but it seems I've read from HepCtreatment.com I think that's right. I'll double check that site. They send out regular emails about new treatments. Everyone is concerned about 12 weeks here, it seems. Anyway in "MY" brain fog.... It seems like I've read we should worry about being SVR at 9 months.

It's my guess that a virus with viral loads as high as 30,000,000, one cell could somehow hide during the treatment and spring back up as it has with people that's taken interferon etc.

Again... I'll post that web site. I find it very informing and stress rellieving after all of these years of dealing with this disease. It's a shame the Gov didn't jump in on Hep-C like they did on aids. I read in another post where the "French" came up with a cure for "C" years ago and tried to work with US drug companies on distributing their product but the US companies wanted too much profit so the French told those companies to go jump!

The dollar is always more important than the lives of their fellow countrymen.....

Downnout · « **Reply #21 on:** August 12, 2015, 07:50:48 pm »

Here's one site where folks can search clinical trials: Most of us here have been fortunate to find some kind of treatment but others have not. This site tells all about clinical trials about to start up... even Internationally They send out emails , of course updating all the time.

Please visit www.ClinicalConnection.com

Roger · « **Reply #22 on:** August 12, 2015, 09:45:12 pm »

Quote from: Mikee on August 09, 2015, 02:07:30 pm

Roger, Now that im cured, Im like Kate I guess I broke up with my Hepatologist. Im not a liver patient anymore! YIPPEE !!!!!!!!

Mikee - Maybe, maybe not. That's why I like to watch these things for a few years. Call me skeptical, but all too many times a treatment just doesn't quite work. Without watching your blood, you won't know until it is possibly way too late and that was my original point - that these gastro docs can cut us loose without caring if the treatment worked long term. For me, I'll bite my lip and just deal with my PCP on the matter, but it shows me a hole in the "cure" system with the gastro community... and that amazes me in as much as there have been so many failures with the various "cures" over the last years. Just say'in.

nicole_1234 · « **Reply #23 on:** August 12, 2015, 09:58:40 pm »

I'm going to go with the probability that if a virus is "hidden" and not replicating after 6 month or a year it seems very unlikely it will bounce back ever. But in general, even for relatively healthy people its prudent to have an annual health check up once a year so why not add a liver panel test and then you could be aware of any signs that its not working well without having to be paranoid the rest of our lives either. Once you've had a chronic illness its probably normal to watch your health more closely, but we should all allow ourselves to enjoy this cure as it's pretty amazing.

Btw, my 24 week test liver panel is normal so no surprises!

Roger · « **Reply #24 on:** August 12, 2015, 10:43:16 pm »

Nicole... who ordered your 24 week liver panel?

nicole_1234 · « **Reply #25 on:** August 13, 2015, 12:28:08 am »

I'm with Kaiser Permenente in Los Angeles and my GI doctor ordered it. Seems it's their standard protocol with Harvoni to do 6, 12, 18, and 24 week test post treatment. Full blood work up, liver panel, viral load, etc...

Roger · « **Reply #26 on:** August 13, 2015, 12:44:45 am »

Quote from: nicole_1234 on August 13, 2015, 12:28:08 am

I'm with Kaiser Permenente in Los Angeles and my GI doctor ordered it. Seems it's their standard protocol with Harvoni to do 6, 12, 18, and 24 week test post treatment. Full blood work up, liver panel, viral load, etc...

BINGO! That is exactly what I was saying... and your follow up care is coming from Kaiser - the absolute tightest insurance/hospital group out there, yrt they understand the importance of tracking these things.

nicole_1234 · « **Reply #27 on:** August 13, 2015, 01:08:50 am »

Yes I agree, I was surprised they even covered me with Harvoni. I've actually gotten pretty great care with them through this. Feel very grateful.

Lynn K · « **Reply #28 on:** August 13, 2015, 02:17:50 am »

Hep c antibodies are not the virus they are made by your own body in response to hep c viral infection in an attempt to fight off the hep c virus. Unfortunately our immune systems are unable to successfully fight off hep c so the majority of us go on to be chronic carries of the hep v virus.

For example if you ever had the measles or were immunized against it, when tested you would have antibodies to the measles. Again they are not the measles virus but antibodies made by your immune system to fight a measles infection which is the case for measles and many other viral infections but unfortunately our hep c antibodies are ineffective at protecting us from hep c.

Just as you carry antibodies to the measles and any other inoculation to a virus you have ever received or viral infection you have had you will forever carry antibodies made by your immune system against the hep c virus.

What these new meds do is prevent the hep c virus from replicating so once the virus completes its life cycle it will die without producing copies of itself.

Imagine if every human on earth became sterile and unable to have children. The human race would die off when the last surviving human died of old age it is the same with this new treatment and hep c. At least that seems to be what the plan is and how I understand the medicines to work.

How relapse happens as far as I can understand is not a "reactivation" of the virus you can't reactivate what is dead and gone. Relapse occurs because a few stragglers just below the detectable limits of the test somehow survived and after the treatment ended they went on to reproduce and repopulate the virus throughout the body. But if by 12 weeks post you are still not detected they just are not there to come back.

Last year when I treated with Sovaldi and Olysio for 12 weeks I was undetectable at EOT but at 12 weeks post treatment my viral load was basically the same as before. My pre treatment viral load was 2 million and 12 weeks post it was 2.4 million the hep c does not waste any time making its return.

But even though I am cured of hep c I will still be tested every 6 months with a liver panel and an AFP blood test plus an abdominal ultra sound plus an annual upper endoscopy looking for a return of the esophageal varicies I has a few years ago and I will see my liver specialist every year this is of course due to my cirrhosis. So for me I will always have the battle scars so to speak of my fight with hep c but at least my cirrhosis won't get any worse and my odds of getting liver cancer are reduced

good luck all

GLCII · « **Reply #29 on:** August 13, 2015, 09:31:39 am »

After reading some of these posts, I'm glad I have a Gastroenterologist/Hepatologist that lives and breathes HCV. As soon as Gilead approved me for the Harvoni, my doc sent out a folder containing all the info on the drug along with all the lab request forms for during and after treatment. Plus had all the labs input in to HFH's computer system. Blood test every two weeks during treatment and tests to be done at 4 - 12 & 24 weeks post I got the file before I got the Harvoni. He also had one of his nurses call about every two to three weeks to see how I was doing. To bad all doctors can't be as persistant as Dr Moonka

Downnout · « **Reply #30 on:** August 13, 2015, 12:05:03 pm »

Quote from: Downnout on August 12, 2015, 07:50:48 pm

Here's one site where folks can search clinical trials: Most of us here have been fortunate to find some kind of treatment but others have not. This site tells all about clinical trials about to start up... even Internationally They send out emails , of course updating all the time.

Please visit www.ClinicalConnection.com

That other site I was talking about is HepCcentral.com. They send out emails and great articles about the latest trials and meds.

BubbaT · « **Reply #31 on:** August 14, 2015, 12:14:27 pm »

Roger, I agree with your points, you make a valid case, not every Dr. Or GI Dr. In this case is going to waste his $$ on you, he gets paid by the patient, if he does not do a test he scores higher on the obamacare mandate, hence he gets a better pay rate for so called saving $$$, which is bs imho.....

It is the system that profits the Dr. Not the patients well being....

Think about it...

Roger · « **Reply #32 on:** August 14, 2015, 01:25:02 pm »

Bubba, If you are correct on that - we are doomed! I swear that we are being surrounded by incompetence, disguised as "professionals"... Doctor & lawyers alike, they all seem to be on the take for themselves, in the name of 'helping' their clients!

dragonslayer · « **Reply #33 on:** August 14, 2015, 05:02:51 pm »

Welcome to capitalism. In a for-profit healthcare system, this is what happens. Actually, the Obamacare feature which is mentioned is an effort to control waste and bring costs down; not a bad thing in itself since in general, its been determined by numerous sources that across all of medicine, way more testing is done than is justified by outcomes....

On the positive side, its this same profit motive which incentivizes companies to spend billions to develop the very drugs which are now proving so successful at curing us!

newbie1111 · « **Reply #34 on:** August 18, 2015, 05:42:49 pm »

Well personally, my doctor was manipulating my tests and prescribing treatment for something that was already inactive. It did not take long to figure that out when no one here could make any sense of my test results. Wonder how much stock my Doc owns in Gilead. Further, they didn't care other than I took the first pill and I took the last pill. All $$ motivated about like Dr Desai in Nevada. There is no "too good to be true pill" or "one pill fix all". My Mom taught me long ago that if it sounds too good to be true, than it is.

Good health to all.

An inappropriate link was removed by the moderators.

Lynn K · « **Reply #35 on:** August 18, 2015, 06:03:25 pm »

What were you treated for that was inactive? Hep c is never inactive either you have it or you don't

Hep c is a very slow acting virus but over many years there is a distinct possibility of increasing liver damage over time. For me it took 30 years of infection but I eventually was diagnosed with liver cirrhosis.

Hep c does not sleep. If you are infected with hep c the best choice I you can is to treat it to eridicate the virus so you don't run the risk of liver damage and also other conditions down the road that can be caused by hep c infection

newbie1111 · « **Reply #36 on:** August 18, 2015, 06:45:49 pm »

Hep C, it was not detected

Roger · « **Reply #37 on:** August 18, 2015, 08:11:51 pm »

I have contended that most (all?) gastro doc's are "burps"... most have the personalities of a burp. I have 1 (not my HCV doc) that is excellent, but all the other ones I've met are in such a rush to get back in the scope room to make their next "commission" that they never have time for questions/answers. Frankly, that has always bothered me... I'm the customer and they are the WELL paid vendor. If I have questions, I want answers, etc.

I just read this article. Looks like the gastro doc category must attract a certain type of student!

http://www.nextavenue.org/how-to-be-a-bad-gastroenterologist/?hide_newsletter=true

Burp...

Lynn K · « **Reply #38 on:** August 18, 2015, 11:34:20 pm »

Quote from: newbie1111 on August 18, 2015, 06:45:49 pm

Hep C, it was not detected

About 25% of people have tested positive for the antibodies to hep c meaning they were exposed at some point in their life but we're able to fight it off on their own successfully these people will test positive for antibodies to hep c but will test negative for the virus itself when tested with the HCV RNA by PCR blood test.

Same for me I beat hep c with Harvoni this year on my 5th treatment after being infected for 37 years and having liver cirrhosis due to hep c for the last 7.5 years. I now test not detected for the virus but will test positive for antibodies for the rest of my life.

Congrats. You were apparently one of the lucky 25% who beat hep c on their own.

Best to you
Lynn

nicole_1234 · « **Reply #39 on:** August 19, 2015, 02:44:07 pm »

Lynn, I don't think I already congratulated you, yeah!!!!!! I'm so happy for your news. You've had one hell of a fight. Harvoni is a miracle drug.

I just got my 24 week post treatment results and I am still clear! Happy days!!!

dragonslayer · « **Reply #40 on:** August 19, 2015, 03:22:13 pm »

>>Well personally, my doctor was manipulating my tests<<

Newb, this sounds incredible... How and What was he doing to 'manipulate' your tests?

Lynn K · « **Reply #41 on:** August 19, 2015, 05:59:59 pm »

Thanks Nichole and awesome congrats to you.

Ain't freedom sweet?

newbie1111 · « **Reply #42 on:** August 20, 2015, 10:55:53 am »

Make a long story short, whatever they wanted. In other words, if they did not get the result they were looking for which they did not, then they just did whatever they wanted to with my blood. The last time was the straw that broke the camels back, when they did not even want my test, I did. Then marked all over my tests that wrong test was ordered, a week after giving the tube of blood, they took it and ordered something else be done with the tube of blood that was intended for a particular test and given on a particular order. Very highly unethical, but as I said $$ driven. This was not the first time that they did this. It is a sad state that a person with a diagnosis as serious as ours, can not get competent doctor's care, without the interference of their greed. I am sure it happens more than most people are aware, as they choose not to see it, and trust whatever they are told. Good Health to all!

Lynn K · « **Reply #43 on:** August 20, 2015, 11:10:05 am »

Can you go see a different doctor? We in fact are the customer and if dissatisfied with your service you could change doctors many of us here have for various reasons.

Also I am a bit confused you said above HCV not detected do you have hep c or not?

newbie1111 · « **Reply #44 on:** August 20, 2015, 11:24:56 am »

I have had many doctors for many different reasons, and yes I was diagnosed hep C genotype 1a, at a very early onset a while ago. My test prior to treatment came back undetected, and so the manipulation begins. Anyway, I am undetected, but it took me a lot of time and trouble and undue stress to find that out. I have a doctor whom I have had for many years that will monitor my condition, one that is not $$ motivated and one that does not have any hidden agendas as far as my health care. For that I am extremely grateful, and for my health I am extremely grateful. At onset I had many symptoms very serious, and today, the majority of those are gone. I almost couldn't walk due to swelling in my feet and ankles, thus the diagnosis came. I also use to wake up in excruciating pain screaming, I hated to go to bed, it was a battle. I could not barely make steps and I certainly could barely walk - if even a block. My recovery from Hep C was a continuous, committed effort on my part to get better and be able to live life. God has been on my side, and he is awesome. He gave me vision, and so I use it. I personally would love to see all people well that suffer from this. All I can say really is, that there is hope and avenues that one can take in order to help themselves, The most difficult thing of all is the commitment to yourself.
Good health to all.

Lynn K · « **Reply #45 on:** August 20, 2015, 03:25:38 pm »

So if you were not detected before you treated and of course would not be detected after treatment then you don't have hep c if I am understanding you correctly.

I also assume that you do not have any liver damage that you know of.

What were the specific blood test you were trying to have done and what test did your doctor I assume your doctor change them to ?

You say they I'm not sure who the "they" is you're referring to? I guess I'm not entirely understanding your situation.

If you don't have hepatitis C and you don't have any liver disease what are you been tested for?

If your doctor tested you for the hepatitis C virus prior to your treatment found that you did not have hepatitis C treated you anyway for hepatitis C I imagine you could either possibly sue your doctor for that or report him to some sort of medical review board.

i'm just kind of confused about the situation you're describing.

Best of luck to you
Lynn

Lynn K · « **Reply #46 on:** August 20, 2015, 07:42:57 pm »

Reading your symptoms a little more you said swelling in your feet and ankles. I guess you mean edema? I also have edema due to liver cirrhosis but I know edema can be caused by different things not just cirrhosis. And of course cirrhosis can be caused by more than hep c.

I am still trying to understand if you were one on the lucky 25% who clear hep c on their own without treatment but that only happens as I understand it in the early stages of infection.

I believe once people go into the chronic phase they remain infected for many years until they have a successful treatment either with the old interferon treatments that worked for some or these new generation medicines that are having much greater results to cure their hep c.

If not cured with these meds they are still waiting for something to cure them and they continue to be infected with hep c.

As far as I have heard none of the symptoms you have listed are from hep c and the edema could be a symptom of cirrhosis or something else.

I especially had never heard mention of waking up in screaming pain from hep c and edema. I do occasionally have problems with strong and painful leg and foot cramps but for me this is also probably related to my cirrhosis and the diuretic I am taking for edema Spironolactone.

Still confused as to why a doctor would prescribe an expensive medicine to someone who is not infected with hep c when there are so many who are infected and actually need this medicine. It just doesn't make sense to me......

newbie1111 · « **Reply #47 on:** August 21, 2015, 10:19:41 am »

Well, In you saying it doesn't make sense, you are exactly right it doesn't make sense. Fortunately for me, if it doesn't make sense it is a lie. I am a truth seeker. If something does not make sense I gather all data, sift and sort, until the truth reveals itself. That generally does not take long for the truth to be revealed if you are truly seeking it. The They I am talking about - are infectious disease doctors. And the symptoms I experienced are the only reason that I got diagnosed with Hep C. You see, my rheumatologist was going to put me on steroidal anti-inflammatory medication. In order to treat with that, a person has to be screened for hep C antibodies because that type of medication can make Hep C worse. After being diagnosed positive with Hep C antibodies, they did a test to see if it was active or if it was a previous infection(inactive). Yes it can be inactive in your body if your body has been exposed or the virus is not actively replicating(dormant)and you do not have a viral load(undetected). Active meaning you have a viral load. I chose to do the research, to help myself, to do things for my body I had never done before. Lots of research as a matter of fact. I chose to turn down traditional treatment, for a variety of reasons. One reason being I wanted to educate myself on this condition prior to jumping in to something I knew nothing about. I committed myself to getting better. It took several years, but in the meantime after last labs for viral load, it came back undetected prior to doctors prescribing Harvoni. Since that wasn't good for them, then they did other things with my blood in order to obtain a viral load(I assume it was my blood) however it is hard to tell when so much time lapses from the time you give blood until the time they decide to produce the results. Meaning - before you ask, a normal viral load test (QN PCR RT OR QL PCR RT) took 2 days to be reported and confirmed. When being manipulated, it could take 1 to 2 weeks for the doctors and labs to come back with the results. There was definitely an inconsistency in production of results when the results were not what they were looking for. Also, the labs do not look like normal labs and also have other comments all over them. You see it is not good for doctors to tell you you are cleared of the virus, especially if you are standard treatment naive, and it certainly does not give them a paycheck. So what better person for cure rates and a paycheck, then a person that is already cleared the virus and one that has insurance that will so quickly approve the treatment and cost of the medication. Exactly the type of patient the doctors and Gilead are looking for. Same reason Gilead cut off it's support path, so patients are forced to sue insurance, insurance is forced to pay, Gilead is not freely supplying medication to those who need it. It is a win win for doctors and Gilead to make an enormous amount of money prior to any other pharma company coming out with a generic or more affordable medication. Yes it is a shame it is that way, but I am afraid to say in my case it was. In answer to some of your other questions - it makes no sense to me that a person - who has absolutely no liver damage, no inflammation, no cirrhosis, and by the doctors means - a low viral load - can get approved in a heartbeat for Harvoni, yet a person with cirrhosis is not sick enough? In my opinion and this is only my opinion, that we need more honest doctors who will respect a person's choice to the way that they choose to treat. Whether it be by natural means or by traditional standard therapy. If all agendas were put aside including the high priced medication that is definitely a driver in the push on traditional standard treatment, then we may end up with more honest Doctors. I am not saying all doctors are dishonest. They are out there though, and in reputable places. Fortunately for me, I did have 1 nurse that was honest and did tell me she had never seen anyone's labs do what mine did in 20 years of being in the infectious disease business. All labs are normal, in fact, extremely normal. It has been an amazing journey and not one to be taken lightly. I was diagnosed Chronic Hep C - however - I am not certain that was accurate. I watched my viral load and other labs over many years. So I know for a fact it was caught early in becoming active no matter how long it had been since I had been exposed to Hep C. And no I do not have edema , I do not have cirrhosis, and I do not have liver damage. I was diagnosed fibromyalgia, severe fatigue, on and on. But as I said, as I worked on correcting and clearing my body of the Hepatitis C, all of the other symptoms have become near to nothing. Amazing, absolutely, Impossible absolutely not. Nothing is impossible with God. I am not saying that there are not people that definitely need the medication. I am most certain that there are people that need the drugs for life saving measures. Why push a person not interested, or that is extremely stable, or that has chosen a different course of treatment, into taking medication that someone else so desperately needs but can't get for various reasons. Why not focus the efforts on getting those people the medication? It makes me sad to see that people are taking their retirements, cashing in cd's, and mortgaging their houses to get something that they are so willing to take. Yet a person like me, that did not want it, has not been waiting for years for a fix, nor interested in traditional standard treatment, can get this medication for near to nothing. You are right Lynn, that it makes absolutely no sense, but what I can say is that I will tell my story in hopes that it helps those get treatment that want it, and that it helps to make the medication affordable to those who truly want to follow standard treatment protocol. You have all been so helpful, and listening and learning from all of you has been great! Good health to you, and I wish everyone the best on their journey to living Hep Free!

dragonslayer · « **Reply #48 on:** August 21, 2015, 10:39:50 am »

>> You see it is not good for doctors to tell you you are cleared of the virus, especially if you are standard treatment naive, and it certainly does not give them a paycheck. So what better person for cure rates and a paycheck, then a person that is already cleared the virus and one that has insurance that will so quickly approve the treatment and cost of the medication. Exactly the type of patient the doctors and Gilead are looking for. <<

Uhm, Really? Paranoia strikes deep.

Lynn K · « **Reply #49 on:** August 21, 2015, 10:58:28 pm »

Having antibodies means you were once exposed but if you have no viral load you were able to beat the infection. About 25% of people are able to do so. Antibodies does not equal dormant infection antibodies are made by your own immune system in response to the virus. Antibodies are not the virus they are a part of you.

Just as if you either had the measles or were vaccinated against the measles your body has made antibodies against the measles. Measles antibodies are not the measles virus any more than hep c antibodies are the hep c virus. However while antibodies to the measles impart protection to future measles infection hep c bodies do not work in that manner against the hep c virus.

If you are positive for the hep c virus on a HCV RNA by PCR test or similar then you are infected with the virus if you have a positive antibody test you may or may not be infected with hep c. This can only be determined with testing for the virus.

I am now hep c not detected because Harvoni has eradicated the virus from my body and I am cured of hep c I will forever test positive for antibodies to the hep c virus just as I test positive for antibodies to the measles but I and not infected with either virus.

A previous infection is not inactive it is non existent. I had a previous infection and now I do not. If you are infected with hep c and have a positive test for the virus it is not inactive it is slow acting for most and called a silent disease for that reason but hep c never sleeps.

There are many good reasons not to treat a patient for hep c when they are not infected medical malpractice comes to mind. Plus wasting valuable time and resources on patients who do not require treatment while so many want and cannot get the treatment they desperately need.

The viral load test takes more days to come back than other tests and the lab does not run that test every day so if you hit the cycle wrong it will take longer than average to receive results.

And looking at my labs with the exception of my platelet count they all look normal even before treatment they were just slightly above normal again except for the low platelet count but that is not from hep c that is from liver cirrhosis.

Best of luck to you hope you find a solution to your remaining health problems and congrats again on being clear of hep c

Mugwump · « **Reply #50 on:** August 22, 2015, 03:43:56 pm »

Hopefully soon the ridiculous high costs of HCV RNA testing will come down to a more sane level soon. This could help settle the issue to say the least. FOR cryin' out loud it is really cheap getting a DNA paternity test done. WHY THE HELL does it need to be so expensive to simply test for the presence of the virus.. NO one in the industry seems to answer this important question in an adequate fashion!

chino1969 · « **Reply #51 on:** October 03, 2015, 03:33:03 pm »

When I relapsed last year after a 12 week regimen of Solvadi/Olysio, my viral load went back to before, despite being SVR at 4, 8 & EOT.. My AFP shot up to the 400's and my gastro. thought it time to see one of the top Hepatologists in Phila.. I chose my own based on my own research and found one of the best who was involved with the clinical trials. At this point I had already been approved for 24 weeks of Harvoni after appealing. At any rate, during my first consult with the top Philly Doc, he felt that had I remained on Solvadi/Olysio for 24 weeks that I would have been cured. After about 8 weeks on Harvoni my AFP fell to a normal range as did all of my liver chemistries. My Philly Doc. said he had expected that. I was SVR at 4 weeks EOT and my Philly Doc was very optimistic that I would be cured. My 12 week EOT bloodwork is the 1st week of November and I am optimistic. I just don't feel the virus anymore. He has had me undergo ultra sound and CT scans and there is no evidence of liver cancer. All I can say is that I feel as if I have been given a second chance at life. I hope that many can share in this success.

donk · « **Reply #52 on:** October 13, 2015, 11:34:09 am »

I am "not detected" 4 weeks into TX Harvoni (12 week duration), 12 weeks post, and 24 weeks post. The gastro doc said for me to have a VL test 1 year post then once a year after. He said my primary care doc can order the test and only go back to him if there is a bad outcome. Has anyone ever heard of this post tx procedure? I guess it doesn't hurt but his caution did surprise me.

Mugwump · « **Reply #53 on:** October 13, 2015, 11:48:28 am »

Quote from: donk on October 13, 2015, 11:34:09 am

I am "not detected" 4 weeks into TX Harvoni (12 week duration), 12 weeks post, and 24 weeks post. The gastro doc said for me to have a VL test 1 year post then once a year after. He said my primary care doc can order the test and only go back to him if there is a bad outcome. Has anyone ever heard of this post tx procedure? I guess it doesn't hurt but his caution did surprise me.

Yes that is a little overkill. Some specialists now consider 12 weeks UND as cured. My GI called for a 24 week eot VL test just to be sure. I can understand if you have a partner who is infected but if there is no other risk factors the extra retests seem to be overkill.

And congratulations of the 24 week UND!! I started a thread HERE to help ascertain whether or not there are any relapses at all for those who reached 12 weeks eot UND. So far the results are fantastic there are no individuals who reached 12 weeks that have relapsed and become detected again at 24 weeks.

Here is hoping that 12 weeks EOT UND truly is the definitive result and that there are no relapses at all!

Eric

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