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Author Topic: HIV/HCV Newly Diagnosed  (Read 22150 times)

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Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
HIV/HCV Newly Diagnosed
« on: August 10, 2014, 08:46:40 pm »
Hi Folks,

I'm new here and not sure if I have posted in the right forum but was hoping for some advice from you all and would greatly appreciate some guidance.

I have been HIV+ for some 18 years now and have a T-Cell count of 628 and an undetectable viral load. I am currently taking Tenofivir, 3TC and Isentress.

4 weeks ago I was unfortunately diagnosed with HCV genotype 3, here are my results over the last month.

Date:         08/07/14    15/07/14    05/08/14         
  Time:            16:10       11:50        NS
  Request:       8788261     8788483      8723806
-------------------------------------------------------------------------
  Sodium             140                             (135 - 145)   mmol/L
  Potassium          4.4                             (3.5 - 5.2)   mmol/L
  Chloride           105                             (95 - 110)    mmol/L
  Bicarbonate         30                             (22 - 32)     mmol/L
  Urea               3.5                             (2.5 - 8.0)   mmol/L
  Creatinine          64                             (60 - 110)    umol/L
  eGFR              > 90                                   mL/min/1.73m2
  Urate             0.19                             (0.18 - 0.47) mmol/L
  Calcium       *   2.11                             (2.15 - 2.55) mmol/L
  Adj.Ca        *   2.08                             (2.15 - 2.55) mmol/L
  Phosphate         1.26                             (0.75 - 1.50) mmol/L
  T.Protein           70          74           77    (60 - 82)     g/L
  Albumin             42          44           46    (35 - 50)     g/L
  ALP                 94          97          100    (30 - 120)    U/L
  Bilirubin           14          12           14    (< 25)        umol/L
  GGT           **   197    **   204     **   197    (< 51)        U/L
  AST           **   176    *    138     *     98    (< 41)        U/L
  ALT           **   408    **   372     **   336    (< 51)        U/L

I am a smoker (looking to give up) and was a heavy social drinker who is attempting to dramatically cut back.
I have done a bit of research on supplements and and started taking milk thistle, Liv 52 and chlorophyl.
It's seems that although I have access to some of the best health care in the world (Sydney, Australia) there is little at this time that can be done for genotype 3.
So any suggestions on how I manage my new illness?
Cheers                   
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: HIV/HCV Newly Diagnosed
« Reply #1 on: August 10, 2014, 09:45:44 pm »
Hi,
It looks like you are doing your research - good for you. Is sofosbuvir approved in Australia yet? Here is some reading: http://www.hepmag.com/articles/2678_25345.shtml
And recommendations:
http://www.hepmag.com/pdfs/AASLD_HIV_HCV_Treatment_Recommendations_2014_05.pdf
Other drugs will be out soon, so just keep close tabs on the latest.
Love your idea of quitting smoking - quite important - hope you get help with that.
Stay in touch.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #2 on: August 10, 2014, 09:59:02 pm »
Hi Lucinda,

Thanks for your response.
We have most of the drugs available here I believe but I think the main issue with my doctor is the genotype 3 and cure rates.
The doctor I see is excellent and the clinic is one of the best in the country if not the world and they are constantly involved in trials. At this time I have to wait until something that has a cure rate of 90%+ arrives.
I know that even though I am new to all of this and that there are many others that have struggled with this illness for many, many years my main area of concern is the coinfection and the possible dramatic effects it will have on my liver.
The red wine is my drink of choice and I am trying with difficulty to cut it out completely.
Do you and others on here consider a 75-80% reduction in alcohol intake acceptable?
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: HIV/HCV Newly Diagnosed
« Reply #3 on: August 10, 2014, 10:51:19 pm »
I know some new data re gen 3 will be out soon, and new meds too.
If you can't stop drinking, the more you cut down the better. I couldn't keep it down to amounts that I could live guilt-free with, and ended up in recovery. It was best for me. It felt wrong to suggest to patients that they quit when I was imbibing, albeit moderately, it felt hypocritical. I love my life more than wine, so it was a good decision for me. If you do drink, keep the overall load down - better to have a drink every once in awhile than to have 4 drinks all in a row.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #4 on: August 11, 2014, 06:54:25 pm »
Thats good to hear and my doctor has told me that there is some new promising drugs on their way.
Going to see another doctor for some possible hypnotherapy for smoking and alcohol.

I think the most exciting thing for EVERYONE here is that he said HCV is on the threshold of complete eradication within the next 5 years which is very, very exciting news not just for myself but more importantly for the many people that have struggled with it for years. These are exciting days and I am sure many people will be having a very big sigh of relief.
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #5 on: September 18, 2014, 07:48:49 am »
So after almost 1 month and a serious reduction in drinking (clearly not enough) my latest results have horrified me!
Is it normal for your results to go up and down so dramatically?
How much damage have I caused?
I'm scared as all hell.

GENERAL CHEMISTRY                                SPECIMEN: SERUM

  Date:         05/08/14                    16/09/14         
  Time:            NS          12:40        NS
  Request:       8723806     2545034      2582089
 -------------------------------------------------------------------------
  Sodium                         139                 (135 - 145)   mmol/L
  Potassium                      4.3                 (3.5 - 5.2)   mmol/L
  Chloride                       105                 (95 - 110)    mmol/L
  Bicarbonate                     29                 (22 - 32)     mmol/L
  Urea                           3.4                 (2.5 - 8.0)   mmol/L
  Creatinine                      73                 (60 - 110)    umol/L
  eGFR                          > 90                       mL/min/1.73m2
  T.Protein           77                       75    (60 - 82)     g/L
  Albumin             46                       44    (35 - 50)     g/L
  ALP                100                       96    (30 - 120)    U/L
  Bilirubin           14                       11    (< 25)        umol/L
  GGT           **   197                 **  172    (< 51)        U/L
  AST           *     98                 **    173    (< 41)        U/L
  ALT           **   336                 **  505    (< 51)        U/L


  2582089   LIVER FUNCTION
  Consistent with active hepatocellular damage.
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: HIV/HCV Newly Diagnosed
« Reply #6 on: September 18, 2014, 04:07:53 pm »
Hi,
So let's back track for a moment.
1) You were diagnosed with hep C fairly recently - could this be a new infection or does your doc suspect that it is an older one - I ask because those high liver enzymes often accompany new infections
2) If this is an old infection, has your doc talked to you about your HIV meds - these can raise liver enzymes and cause liver damage
3) Would you consider not taking milk thistle, Liv 52 and chlorophyl - these may interfere with your HIV meds and confound the data. If you really want to do something proactive, see my next point.
4) Do you think you can completely stop drinking for a month until you see the next results? If not, get some help. Drinking is fun, but liver failure sucks - one of the worst ways to be alive - you can have liver-related dementia (hepatic encephalopathy), testicles the size of grapefruits (I am assuming you are a guy based on Tomcat), legs that are so huge from fluid retention that your ankles look like thighs, and so on. Drinking isn't worth that. Or at least, that is how I see it now that I am sober. But when I was drinking, I couldn't imagine my life without it.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #7 on: September 18, 2014, 08:17:52 pm »
Hi Lucinda,

Thanks for your reply.

Yes I am a male and as someone who is HIV+ and regularly monitored I can safely say that this is a recent infection and the drugs I take are apparently some of the safer ones available, Tenofovir, 3TC and Isenstress.

Your words of advice seem sound and good and I will immediately cease taking the milk thistle and LIV-52.

I would not consider myself an alchoholic but a heavy social drinker who unfortunately works in the restaurant trade and is surrounded by wine every moment of my working day so this has of course made it harder for me to cut back or cease drinking all together however in light of these last results and some recent hypnotherapy I now see no other option other than to stop drinking completely.

My doctor said to me "In relative terms the results are slightly higher but really similar to previously.
It's important to note that liver function tests don't absolutely correlate with what's happening to the liver.
I would expect your liver function tests however to fall over time (months) provided the liver is not strained by having to deal with other toxins (eg alcohol)".
Would you agree with this?

Thank you so very much for your words of wisdom and support, I very much appreciate it.

Cheers
« Last Edit: September 19, 2014, 02:18:51 am by Tomcat »
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: HIV/HCV Newly Diagnosed
« Reply #8 on: September 18, 2014, 10:44:31 pm »
The fact that this may be a new infection rather than merely a new diagnosis changes everything. Do you know what your risk factor is, and if so, then you have a good idea of how long you have had it. So, assuming you are acute, these enzyme tests are typical, and yes, they may keep rising (and falling), and what your doc is saying is correct. However, if this is an acute case, you have a shot at clearing it on your own, and in this case, no alcohol would be the single best thing you can do until you at least know you are chronic. I get that it is hard, but you got a shot at clearing this on your own, and then you can go back to guilt-free drinking.

BTW, although those meds are safe, they will cause elevations in liver enzymes, which is why I asked. But now that I see this may be an acute infection, I doubt they are adding to the problem.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #9 on: September 18, 2014, 11:00:26 pm »
Based on the fact that I am tested on a regular basis I would say I was infected within the last 6 months.
Would that have me as still being in the acute stage?
You can see from the results at the beginning of this thread that the first results came in in early July.

Please know that I am really, really appreciating your assistance and advice here.
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: HIV/HCV Newly Diagnosed
« Reply #10 on: September 19, 2014, 12:30:09 am »
It would help if you had a sense of whether there was a risk factor in the weeks prior (I don't need to know what it is, just asking the question). If so, then that would be my guess. Few people are fortunate to know when they are infected, so if this is acute, you have an opportunity to clear it naturally. Do whatever you can to help your immune system. Humor is a fun way to increase immune response. Plus all the other obvious ways - sleep, reduce stress, good diet, water, no alcohol, exercise, etc.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Tomcat

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  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #11 on: September 19, 2014, 02:14:17 am »
There can be no question that it was approximately 5 months ago.
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: HIV/HCV Newly Diagnosed
« Reply #12 on: September 19, 2014, 02:51:20 pm »
OK, so these liver tests should quiet down. In a month you will find out if you cleared (you can clear even with HIV). If you haven't, you can go for the cure, which is about to be easier than ever. HCV is curable, even with HIV.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #13 on: September 19, 2014, 08:19:26 pm »
Thank you,  you have shed some very enlightening information that has eased my conscience considerably and I appreciate it  more than you know.

These recent results and advice from my doctor and yourself have now made me realise how important it is to remove alcohol from my life and I am feeling very confident about not drinking,  as you said "drinking or liver disease". If I hadn't got the idea before I most certainly do now.
Thank you lucinda
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline trebor

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  • Posts: 9
Re: HIV/HCV Newly Diagnosed
« Reply #14 on: September 20, 2014, 02:31:50 am »
Hi Tom--

When I found out about my Hep C, I wanted something to happen that day. My dr. who was fantastic, said that no one would treat me for 6 months- since that was the acute stage where the body can indeed heal itself. Although it didn't happen for me, and I too, am HIV+-- I got in a drug trial of Daclatasvir plus Sofosbuvir. Now 3 months past treatment and I am still undetectable-virus not present.

It was no trouble at all- 2 pills a day-- compared to the difficult treatments of the past.

Be strong- this will soon be in your past.

Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #15 on: September 20, 2014, 03:33:39 am »
Hi Trebor,
Thank you so much for your advice and comments.
The 6 months was never mentioned to me by the doctor so your news is very encouraging.
This journey is now starting to remind me of my early days with HIV and the limited information provided you by the doctors and the long road of research you have to do yourself. Thanks again
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: HIV/HCV Newly Diagnosed
« Reply #16 on: September 21, 2014, 07:31:34 pm »
You are welcome Tomcat. Also, Trebor's comment is reason for hope.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Tomcat

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  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #17 on: September 21, 2014, 10:56:48 pm »
Ok so here's my next question.
I am a slim guy in my 40's and in the last few months have started losing a lot of weight.
I'm eating very well and doing all the right things but am greatly concerned about how much weight I am losing especially in the face. Any words of wisdom here?
Obviously being a long term hiv survivor isn't helping things.
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline Tomcat

  • Member
  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #18 on: September 21, 2014, 11:16:15 pm »
Note; I have taken L Glutamine in the past week,  would you recommend this and is it safe to take.
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: HIV/HCV Newly Diagnosed
« Reply #19 on: September 22, 2014, 11:22:19 am »
Probably safe, but not recommended for people with liver disease http://umm.edu/health/medical/altmed/supplement/glutamine
I used to be the supplement queen, and have substantial research on it. In the past few years, I've come to believe that with the liver, less is more. So, I don't take any supplements specifically for my liver (I do take a no-iron multi, vit D, calcium). I eat a very clean diet, no alcohol, sleep and exercise, etc. It works for me.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline emmett

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  • Posts: 31
Re: HIV/HCV Newly Diagnosed
« Reply #20 on: December 24, 2014, 06:27:03 am »
Hi Tomcat, HIV+ as well but with 1a, I used to drink but felt awful from it, never knew till late that it was HEPC but the moment I found out I quit drinking and started to learn everything I could about the disease, I tried the old meds and ended up sicker than a dog and in the emergency getting blood transfusions. I found out that I was f2 a few years back and progressed to stage f3 that is very close to cirrohsis with lots of liver damage, with HIV it tends to speed up the progression of HEPC and I have seen guys in a support group I used to attend go from healthy guys to deaths doorstep fairly fast. I was scared to death when I found out I was F3, I started to prepare for dying if these new drugs didn't get here fast enough, I'm on Harvoni right now, been on it almost one month and will get my viral load done at the end of the month, I'm excited but a little scared...it's good to know other drugs are out there. You're lucky new drugs are very close, this disease sucks big time. I stopped smoking years ago and it wasn't easy but if I did it, you can too, I loved smoking and did it to the extreme, I loved drinking as well and sometimes wish I could have toasted with others once and awhile but my liver always came first. Big hug to you, you'll be fine and life will be good.

Offline Tomcat

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  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #21 on: December 24, 2014, 06:43:09 am »
Hi Emmett,

Thanks so much for your message, I only by chance caught it just now.
Your story means a lot to me and I thank you for sharing.
It's very hard for me as I work in the hospitality trade and am also involved int he wine industry. I have reduced my drinking by around 60%, have started taking milk thistle, c and b vitamins plus am on day 52 of NO SMOKING and feeling great for it.
To you and everyone else out there I am feeling tired and fatigued and have only had this thing for 6 months, I have a demanding job and a social lifestyle but am doing everything withing my power to live a healthy life except I have not cut wine from my life 100%.
Any help help or guidance here is greatly appreciated.
Emmett, I very, very sincerely hope that your treatment works and that you have a happy and healthy future to look forward too.
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline emmett

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Re: HIV/HCV Newly Diagnosed
« Reply #22 on: December 24, 2014, 06:53:23 am »
Tomcat,
Maybe your fatigue is from your body fighting of a new virus, I hope you clear it on your own. Stopping smoking puts your body through some weird things, I remember not feeling so great for quite some time and there is some stress involved with stopping an addiction. I do mindfulness meditation and play the drum, they both help my stress levels greatly and I doubt I would have made it through without my hobbies. Tomcat, can you believe I never ever think of cigarettes now and it feels as if though I never was a smoker, it took time but that is in your future as well, you will never even think of them and no longer have any desire down the road and it will help everything. I look at some of my friends skin that still smoke and baby mine looks 10 times better and I know it is because I stopped smoking years ago. You will beat this disease and maybe it is a blessing in disguise, I know you don't drink much now but alcoholism can sneak up on you and coupled with smoking can reduce the quality of life later and smokers that have HIV don't live as long. All the very best and it makes me feel good to get your well wishes...I'll post on here my test results I'm doing at the end of the month.

Offline Tomcat

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  • HCV/ HIV on Daklinza and Sofosbuvir
Re: HIV/HCV Newly Diagnosed
« Reply #23 on: December 24, 2014, 07:00:25 am »
Emmett,
I can tell you know after almost 2 months my skin is looking better however my body is very tired. I have started working out so that I can build up some muscle strength (something I previously lacked) and that I know also has its toll. 
It's Christmas eve and I wish you all the very best and look forward to hearing your results 
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline emmett

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Re: HIV/HCV Newly Diagnosed
« Reply #24 on: December 24, 2014, 07:08:25 am »
Tomcat,
Wow, exercise too, that is wonderful and let me tell you it has also been a lifesaver for me through the years. I took martial arts as a young man and learned early on the value of exercise on so many levels both mentally and physically but if you are just getting started it might be a good idea to get some help and more is not better when fist starting...take it slow and it will be the best thing you ever did. I wish I was there to workout with you, yoga is also very good as well as tai chi coupled with weigh bearing exercise. Try to do things that you will enjoy, you are more likely to stay with it and finding a mate to do it with makes it a whole lot easier to stick with it. I have been through the mill, I've been in hospice and close to death many times with HIV and each time I gathered myself and pulled out of it and exercise was always what the doctor ordered. You're a smart guy and doing it all right, bravo.

Offline Tomcat

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Re: HIV/HCV Newly Diagnosed
« Reply #25 on: December 24, 2014, 07:19:08 am »
Thanks mate,
I appreciate the words of wisdom and support.
I am not far behind you HIV wise but thankfully now have it all very much under control.
My days of irresponsible and reckless behaviour are done and finished,  after all that's how I got here in the first place. Now it's all about putting the mind and body back to where it should have been. Happy,  healthy and wanting to live a long positive future.
Am wondering now about maybe joining an actual group to meet others, did you find it beneficial?
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline emmett

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Re: HIV/HCV Newly Diagnosed
« Reply #26 on: December 24, 2014, 02:46:08 pm »
Tomcat,
There aren't any support groups now that I like going to, they are very small or nonexistent. I live in Palm Springs California so there are lots of Gay men, the support groups for HIV used to be huge and the HEP C group always small, I think there was a bit of shame factor with the HEPC. Anyhow, I loved the support groups years ago because I gained some life long friends and lost quite a few over the years. I ended up going to a group for Codependents and gained more friends and the ability to say no so yes, if they have groups go try them out, you can always walk out if they don't suit you, sounds like you have your head on straight...it took many long years for me to screw mine on straight and sometimes it's still a little wobbly but that's me, people think I'm a bit strange but like me. I can't start singing or dancing in the middle of a street, go figure. I ran a support group myself as well and remember the days in Phoenix Arizona when we all got together and started our own groups and tried all kinds of things to stay alive, I miss the camaraderie. The latest group I had was dance and music therapy, I did it with a woman and she led them in dancing while I played the drum and then after that we sat in a group and I led folks with music therapy, that helped me get through some of my funky days. I also don't have the energy to work full time so your doing much better but I do a little in home healthcare for friends and neighbors and volunteer to do massage for seniors. I keep as busy as my body will allow and then some, I push myself, always have always will. I really hope you clear this and can move on and just have it as a life lesson. Cheers

Offline emmett

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Re: HIV/HCV Newly Diagnosed
« Reply #27 on: December 24, 2014, 02:59:30 pm »
Tomcat,
BTW, I turned 60 this May, can't believe it but people still tell me I look like 40s. I lived through the worse part of the epidemic seeing half my office die within a few years and the love of my life. I was so bad off just before the protease inhibitors were released that I'm lucky to be alive. I was diagnosed with GRID, gay related immuno deficiency disease. I remember when the disease hit the coasts of the U.S. and I lived in the Center, Chicago, Il., we thought if we didn't sleep with any men from the coasts we'd live and not get sick but soon enough it made it into the heartland of the country and I started to feel a bit unusual and then the deaths started there as well. I can't believe that I've reached 60, seems like it was only yesterday that I was 30 and still wonder if I really am and it's just some big joke, hahaha. Go for the gusto, never sit on your ass, life will pass you by, go to school if you don't like your job or stay at it if you enjoy, at 40 you can still do almost anything, the possibilities are endless, the people you will meet, things you will experience will be glorious, this disease can now be beaten and you are going up the ladder to the roof where things will be much better. Ok, it's a beautiful day and I'm going out to play my drum on the street where I'll meet lots of people and have lots of fun. Merry Christmas or Happy Holidays, :-).

Offline Tomcat

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Re: HIV/HCV Newly Diagnosed
« Reply #28 on: December 25, 2014, 08:19:07 pm »
Hi Emmett,

Merry Christmas to you, it's Boxing Day here in Sydney (Commonwealth Public Holiday).
I hope you had a great day with friends and family. I chose to be alone which was a shock to everyone considering how much of a social person I am but it was wonderful, me the dog and the TV and I loved every moment.

Thank you for your tale, it's lovely yet sad to hear these stories and important for everyone to hear and understand how difficult times were.
I was diagnosed HIV is 1998 so was very, very lucky as I knew some people how weren't so lucky.
Also the healthcare provided us here in Australia, Sydney especially is some of the  best if not the best in the world and I was lucky to be able to see one of the leading worldwide specialists in my early days which made such a difference.
Secondly 'The State' takes very good care of us financially, something I know the US does not. ($110 for 2 months of HIV meds!!!)

Your story is your story and although not uncommon, it is one that should be heard by all so thank you for sharing and here's to you and another 40 years!

I am on our summer/Christmas holidays for 10 days so am going to use it wisely to rest and enjoy the sun, clean air and bush and get my head ready for a very busy 2015.

HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline emmett

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Re: HIV/HCV Newly Diagnosed
« Reply #29 on: January 03, 2015, 01:17:49 am »
Tomcat,
Some people get great healthcare here and also some of the best in the world but more than a few get suboptimal or little to no healthcare, it has been a struggle for me to be honest. I'm so glad you are getting top notch healthcare, the more people that are, the happier it makes me.

Not everybody does but I could feel my liver getting worse, unfortunatly it was finally backed up by testing and while I knew it, I felt none the less bummed big time. Having failed the old medications for hepatitis I became frightened that I would not make it to the new meds, the last year has been very hard and I was feeling worse and worse, it's a mother standing on the precipice and wondering if or when I'll fall in.  Man was I pumped when Harvoni was approved, I could almost taste the cure and waiting for paperwork and all the BS to be taken care of was an eternity, only to later receive a denial letter from my insurance company, unbelievable with late stage liver disease. Gosh I'm lucky to have a wonderful doctor that actually cares as he went to bat for me fighting to overturn the denial and voila I was approved. I've been on pins and needles this whole month knowing that I'd need a blood test after one month to see if the drug was working. Today was my appointment with the doctor to get my 1 month results, my stomach was very queasy waiting to go into my doctor and get the results and it felt like I was on an elevator that kept falling 10 floors suddenly, HOLE MOLE, I'm undetectable after 1 month, so it looks like I may actually be cured...I'm so frickin grateful.

Seriously, I'm also and from the bottom of my heart wishing you all the very best. I know you will be ok and beat this darn thing sooner then later. 

Offline Tomcat

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Re: HIV/HCV Newly Diagnosed
« Reply #30 on: January 03, 2015, 01:27:52 am »
Hi Emmett,

Happy New Year and what absolutely wonderful news, I don't even know you but that bought a tear to me eye. Congratulations!!!!!!!!!!!

You waited a very long time and put a lot of hard work into this so you deserve everything you get now, enjoy.

It's summer holidays here and I have tried to be as good as I could but abstaining was not one of them. I am now on day 3 of completely drying myself out, cleansing and caring for my body as best I can.
Even though I am trying to do all the right things I still fall back into the social trap and now seem to find that the only way for me to abstain is to be on my own and not be around my very social heavy drinking friends.

so 2015 has to be the year I make greater improvements.

Congratulations again and soon you will be able to have a lovely celebratory bottle of something!
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline emmett

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Re: HIV/HCV Newly Diagnosed
« Reply #31 on: January 03, 2015, 02:08:48 am »
Hi Tomcat,
I don't know you but feels like you are down the street, hahaha. Thank you for your reply, again it was so nice. I was at a friends for Christmas and while I'm not a Christian I'll go to anybody's house that is serving a nice meal, :-).  The guys wife that was hosing the party is from Poland so the food is a mix of traditional local and European delights, she and her mother cook all day and I love all the sweets, I brought a homemade apple gallete. Anyhow, she had a bottle of vodka that she brought back from Poland and being from Chicago I am used to good Polish vodka, there are more Poles there than in Warsaw. It's been a long time since I've had Polish vodka and good good vodka, so I had a very small taste and it was fantastic.

I used to have probably half a shot glass of vodka a couple of nights a week when I was living in the big city and I'd sip it very very slowly in a huge rocking chair before going out to the gay bars. I'd go out quite often and everybody told me I was a cheap date, it would take me over an hour to have a beer and it was always warm before I would finish it but 2 beers would get me quite toasted so often I just had a coke. You can only do the best you can when it comes to alcohol or your life, you know what is right and wrong for you. I wrote something under the heading, "drinking wine", maybe you will find it interesting. Happy new year to you as well. It's been cold here and we are in the desert so it is unusual, got down to freezing the last couple of nights so I've been covering the tomatoes.

Let me know how you are doing, I know it will be good and if not it will only be a blip on the radar screen hopefully.

Offline TXLastTime

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Re: HIV/HCV Newly Diagnosed
« Reply #32 on: June 21, 2015, 09:33:06 pm »
TomCat,

Sorry but you need a wake up call. You have HIV/HCV and continue to drink? You wonder why your blood levels are all out of control?

Seriously you need to quit drinking alcohol immediately if you care anything about your life. Your AST and ALT are through the roof and I have never seen results like that before. Genotype 3 will kill you very fast if you continue drinking.

I hope you heed this advice.


 


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