Hep C Discussion Forum

pl1952 · Senior Member

RE: CONQUERING THE DRAGON!

Groupergetter · Guru

pl1952 wrote:
Thanks Matt! It's been a long time...I'm not gonna claim my seat on the Harvoni train until I have those pills in hand on Thursday..It still feels like a dream that this is actually happening...

Hi pl, your time is drawing near. You will be amazed how quickly your labs improve and how quickly the tx goes. You're about to be on the ride of your life........yeeeeeeeeeeeeee haaaaaaw. Look forward to reading about your progress. Take care

-- Edited by Groupergetter on Wednesday 4th of March 2015 12:21:06 AM

pl1952 · Senior Member

Thanks Gator Man! :)

shadow10cats · Senior Member

You're very welcome!

Gator Man · Senior Member

BJ, even the "efforts" of your doctor's office doesn't detract from the good news! You're almost UND and will conquer this dragon permanently!

Great news, PL. Your seat on the Harvoni train (1st class) is reserved for a Thursday departure!

pl1952 · Senior Member

Hey Tig! Thank you...Yep, my sentiments exactly! I'm beyond grateful....

Tig · Admin

PL,

Congratulations! I'm glad that Support Path came through for you. Every time I see them provide this kind of help, my distaste for Big Pharm softens a bit. You will do well on this, good luck!

Tig

Tig · Admin

BJ, I'm looking for the "Like" button! Stay on them and respectfully remind them when their information is flawed! They work for you.

Tig

shadow10cats wrote:
So my doctor's office calls today. Not knowing I've already seen the blood-work results she says this to me: Dr. Ben says your "liver panel is normal & the virus is still detectable". Nothing more. Not that it said <15. No explanations. Now I don't know about you, but if I didn't know the result for myself & was told that in that way I would be very disappointed and even concerned. She then says "he wants you to redo bloodwk in 3 weeks and we'll see where we go from there". Again, if I hadn't seen the results for myself I would be wondering "is the drug not working on me - go from there? WTF?" - I think <15 in 24 days is pretty good don't you? He's such an A-hole.
But then he's the same butt head that signed off on lab results showing no virus in my system. 3 mos preceding it was almost 10 million! He just writes on the bottom of the results that the "virus can spontaneously clear itself!"
I don't know about you guys but I haven't heard of anyone who, after being chronic for 15-20 years just clearing the virus without any treatment. I had to call him & say there's no way that's right. Unfortunately. It just goes to show how lackadaisical our medical help is becoming. You really have to stay on top of things and practically do their job for them.
Anyway - got that off my chest. lol

pl1952 · Senior Member

Thanks Matt! It's been a long time...I'm not gonna claim my seat on the Harvoni train until I have those pills in hand on Thursday..It still feels like a dream that this is actually happening...

Matt Chris · Guru

Hey Pl

Congrats on getting your "Harvoni" through "Support Path" you have persevered and now will reap the benefits of your labor.

Shadowcat , I know the feeling of having incompetent medical staff. I almost hate to say this but the most impact-full course to help that situation is to write a letter / email to the dept. head I tell them how you feel, it will likely get you some changed attitudes with your medical team.

matt

pl1952 · Senior Member

Way to go BJ!!! Slay that dragon!! No doubt next bloodwork you'll be undetected. And thanks to you, for posting that thread about Gilead Support Path works, that I'll be getting my Harvoni through them. They said this Thursday it will be coming. I've been patiently waiting for this. I'll refrain from saying what I think of my insurance company UHC.

That post of yours made it easy even for me with the huge brain fog I have, to follow. So thank you for taking the time to write those explicit directions...

shadow10cats · Senior Member

So my doctor's office calls today. Not knowing I've already seen the blood-work results she says this to me: Dr. Ben says your "liver panel is normal & the virus is still detectable". Nothing more. Not that it said <15. No explanations. Now I don't know about you, but if I didn't know the result for myself & was told that in that way I would be very disappointed and even concerned. She then says "he wants you to redo bloodwk in 3 weeks and we'll see where we go from there". Again, if I hadn't seen the results for myself I would be wondering "is the drug not working on me - go from there? WTF?" - I think <15 in 24 days is pretty good don't you? He's such an A-hole.
But then he's the same butt head that signed off on lab results showing no virus in my system. 3 mos preceding it was almost 10 million! He just writes on the bottom of the results that the "virus can spontaneously clear itself!"
I don't know about you guys but I haven't heard of anyone who, after being chronic for 15-20 years just clearing the virus without any treatment. I had to call him & say there's no way that's right. Unfortunately. It just goes to show how lackadaisical our medical help is becoming. You really have to stay on top of things and practically do their job for them.

Anyway - got that off my chest. lol

Bills · Guru

Hi BJ

Your still in the game and your winning. I was thinking before that is a cool avatar. your on top and that Dragon looks worried and should be your are a real Dragon warrior it will fall under your feet. Seems to me you can't tolerate the hard stuff its amazing that there are some of who who did and there were some who couldn't as well. My brother in-law couldn't last 2 weeks he had diabetes . This drug will kill the virus if taken for the duration. Speaking logical we need to clear the virus deep deep in our tissues / organs / bones and the only way to scrub that out is doing the full regime prescribed. As you may have seen some relapses are directly related to the too short treatment durations 8 and 12 weeks when they should have done 24. We need the 24 weeks so keep fighting your doing fine you'll be stepping off that Dead dragon soon.

BillS

shadow10cats · Senior Member

yes in spite of all the controversy and mixed feelings I am so grateful that Gilead did the research to find a drug - that is not only a cure (hopefully) but a drug without the awful side effects of its predecessors.

And on another positive note, I find myself looking more & more like the gal in my avatar the longer I'm on Harvoni. It's just amazing!

And, before I forget I better go take that little bugger now!

Groupergetter · Guru

Hi BJ, great to see the meds are working for you. It's a real boost to know you're on the way to SVR. It's a great ride you're on, relax and enjoy it. Newfound health awaits. Happy for you :)

shadow10cats · Senior Member

You know something? I am calm. I am not worried. I take my pill and go about my day.

That's rare for me I know; being a 21 yr old Scorpio, female, Finn-Swede-Italian female born in 54 the year of the Horse - for whatever that's worth!

Did I say 21?

Tig · Admin

Hey BJ,

I just wanted to add that from your signature line, you listed a beginning VL at 12.7 Million viral copies at one time, to the now less than 15! That's an absolutely huge log drop and is a sure sign that the Dragon is breathing it's last breath, fire be damned! Don't sweat this, you'll be UND next test. Waiting for that number to disappear and stay gone is a nerve racking time, but once you're there, it's going to last. It's easy for me to say, but I'll say it anyway, relax and try to be patient. Your day is almost upon you... We're all here to help you celebrate it when it arrives!

Tig

Cinnamon Girl · Guru

Hi BJ,

It means that the virus can still be detected as being present but that it`s below the quantifiable level of the test. The test can only measure down to 15 iu/ml and your viral load is less than that (<15). It`s still great news that your viral load has dropped so much in such a short space of time, and you have every reason to be doing a happy dance! biggrin

You`ve got off to a great start and as Miss B said, you`ll be UND next time. Congrats!

Miss B · Senior Member

Hi,

I got that <15 result too. The weird thing is that at 4 wks, I was UND, but at 8 wks, <15. It said right on my lab report that if any virus was detected but less than 15, it would say <15. If no virus is detected, it will say UND. So my result went from UND, <15, UND. I'm sure your next labs will be UND. You are still early in your treatment. I know it's so hard to wait for that UND!

shadow10cats · Senior Member

One question someone can answer: my bloodwork said HepC value <15 with a note: HCV RNA detected

What exactly does that mean?

shadow10cats · Senior Member

I only did the LLoyd Wright thing for a few months way back. Shortly thereafter I went on my own. I did find his site helpful but then took info I found there and researched it and made my own decisions. But like with any supplement or holistic approach it is hard to quantify. An approach will work great for one person & they will swear it cured them & then you try it and nothing happens except your bank account shrinks in size! In the end I stuck with a good Milk Thistle, SST granules & anti-oxidants. Every once in awhile I would try some new thing out but for the most part those I stuck with those.

Scruffy · Guru

Slay that beast!!! That vl is good news. I also quit drinking before I was diagnosed with hepc. Bad hangovers..I felt like I was poisoned, I knew some thing was wrong.

Loyd Wright... I did the same took stuff I looked up and felt right taking it. When he was confronted with showing proof he beat x+y with his products there was an absence of proof. Matter of fact there was no proof that he ever had x or Y. There was a claim the records got burned in a fire. expect a "we miss you e-mail " form him. Who knows if he for real, I won't judge.

Best wishes for you and your treatment.

hrsetrdr · Guru

Hi shadow10cats,

What great news, happy for you! Slay that dragon!

shadow10cats · Senior Member

When I found out I had HepC in 2004 I had been going to doctors for around 2 yrs. complaining of symptoms that no one could put a name to. I was given handfuls of anti-depressant scripts because of course; "it was all in my head". I was given pain meds basically to shut me up seems that's what doctors do when they are too lazy to be doctors & actually find out what's wrong with you! When I asked one doctor "what is wrong with me?" she just threw up her hands & said "I don't know! Finally, I found Dr. Navarro, a general practitioner near me. I will never forget telling him how frustrated I was, that I knew there was something wrong & I could only describe it to him as feeling like my blood was "toxic". I described how my blood felt like it was hurting me as it went thru my system. Knowing nothing at all of HepC; little did I realize how right on the button my description was! Dr. Navarro ran a slew of tests but out of all the doctors I'd seen, he was the only one to run a test for the HepC virus. He said "I'm sure you're fine but let's do it anyway, you are in the right age group".

A few days later I received a call & Dr N told me he was surprised to find that I tested positive for the HepC virus. He referred me to a Gastro-Entro & asked me if I had any questions. I had none because my mind was blank from shock, fear & lack of knowledge. I was finally happy that I could put a name to my symptoms. I even felt vindicated I had been right all along. But I became frightened when I went online & read about this disease, this VIRUS, I now had. The internet is a wealth of information but sometimes all that info can be a bit overwhelming & scare the crap out of you. The first thing I asked my HepC doctor was "am I going to die?" Thus began my ride with the Dragon.

When I was first diagnosed in 2004 my viral load was 12.7 million! How can that many viruses fit into such a small amount of blood? I was lucky however, as my liver panel was normal. I'd had numerous surgeries over the years preceding this & my liver functions obviously had always been in the normal range so no red flags were ever set off. I had also stopped drinking a few years earlier - I wasn't an alcoholic but I definitely could slam the crazy water down or easily finish a bottle of champagne by myself! But the hangovers were awful & I finally got sick of being sick. I had also been a vegetarian for years & with not drinking I also didnt smoke anymore. (I was that pain in the butt friend who only smoked when she drank, & then bummed cigs off you all night long). I was getting a lot of exercise too; mountain biking, hiking, canoeing, snowshoeing, rollerblading definitely living a healthy lifestyle. Thank goodness too as those things bought me time & with HepC time is everything.

I researched the treatment options available & learned of the horrendous side effects. With time on my side & new options on the horizon; I opted to wait. Being into naturalistic approaches I hit the internet & found Lloyd Wright's website. If any of you know of him Im sure you also had your doubts: Was he out to scam sick folks out of their hard earned money or was he sincerely trying to help? I still dont know for sure. I researched the products he recommended & picked out ones I felt comfortable trying. His prices were competitive but one in particular sparked my interest: 'natcell frozen thymus extract'. However it cost $400 for a one month supply! I emailed Lloyd & he offered to sell it to me for "only" $300 so I decided to give it a try. All together I spent over $500 for my one month supply of goodies. Thank God for plastic! Unfortunately, I was taking so many supplements, numerous times a day, that one day I just puked them up. After that I decided to narrow down what I bought to a few things, besides I could not spend that kind of money every month anyway.

In 2007, my mom was diagnosed with cancer & I seeing how bravely she took on the disease I decided I could be strong too. I never told her I had HepC but her courage gave me the strength I needed to try to cure my disease too. The treatment then was Peglated Interferon with Ribavirin. I lasted under 30 days. Back to the supplements & healthy living. In 2011, Telaprevir was approved. This was supposed to be a miracle drug with few side effects. NOT! Taken along with interferon & ribavirin for the first few weeks, I lasted less than 3. How the hell anyone can eat 20 grams of fat when everything makes them puke is beyond me. I'd like to meet the joker who came up with that plan! Back to waiting, except by now the side effects of the HepC were taking their toll. My liver functions always stayed normal but I suffered from really bad brain fog, extreme fatigue & symptoms similar to rheumatoid arthritis. I was going to take the next drug that came along that didn't include interferon or ribavirin.

October 2014: Harvoni is approved.

November / December 2014: Capital District Health Plan of New York denies access to the drug. An absolute travesty that someone having great insurance & paying a good price for it cant have access to a drug that can cure them!

January 2015: Gilead approves me in record time to receive Harvoni for free. I begin taking it on the 23^rd.

February 24, 2015: After 24 days on the program my viral load had dropped from over 3 million to <15 - Doing a Happy Dance.............

doingthehappydance.gif~c200

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