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Author Topic: Tested + 2months ago, on meds for a month and the results are in...  (Read 5553 times)

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Offline London2013

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  • Londoner, a devourer of After Eights, flippant
Hullo,

Just wanted to share some good news. I tested positive two months ago and was pretty shocked in the first instance. Obviously I know how the virus transmits but I hadn't seriously considered it could have affected me... I suppose i wasnt in a high risk category, but just goes to show it's always better to get tested than live in ignorance. 

Hey no! Here we are.

The nurses and doctors were all great at the hospital I got my results in, and after the initial shock which lasted for a couple of weeks I told my doc I'd like to get on meds sooner rather than later. My VL was around 150,000 and my CD4 count around 450 - and the funky test that attempts to date the infection I'd most likely contracted (is that the term?) within the last 4-6 months.

I met up with a great clinician, followed by a long chat with a brilliant research scientist who's been working in early infection and she immediately wrote me a prescription for Atripla. I dutifully picked up the pills and took them on the first Friday following (having read some scary stories about the side effects, I also got some meds to avoid them and popped them all together).

Waking up in the middle of a night was a bit bizarre, and I'm glad the chemist told me to be aware of dizziness etc... Otherwise I would have thought someone had spiked my pint! Since then the only side effect has been my super vivid dreams which, I have to say, have ranged from the AWESOME to the MAGNIFICENT! Who needs 3D glasses and hollywood when all you need is an exciting book, dose of Atripla before going to sleep and a cosy bed...

But to the good news. Month on the meds, I got a call from my lovely nurse telling me my VL has gone down to 53 - so almost undetectable in just over a month! We didn't do a CD4 but all the liver and kidney results were optimal so doing great!

I suppose I wanted to share for two reasons. Firstly, I was seriously scared when I first found out. Only armed with A-level (high school?) biology and the random stuff I'd read from the papers (all the more embarrassing as I'm a bit of a smart arse, studied theoretical physics and work in what I'd call a brainy environment), I really didn't know what was coming. I've found that this this forum was a great place to read - quietly - other people's experiences. Experiences about the meds, about their lives and how life can be absolutely normal even with this virus we've managed to contract. (Not that "normal" is necessarily such a great boon always!). Life does go on, trust me.

Secondly, I suppose I'm writing selfishly. I've only told one friend (and an ex gf as she was in the "need to know" category) and talking about it is surprisingly cathartic. Obviously you need to be sure the person you tell is trustworthy, but this forum is a great place to use as a sounding board. I was a bit apprehensive first having read some pretty hard-talking people give their frank feedback, but I suppose everyone has their own style. I have to say, having written this diatribe, even if it goes unread, has made me feel better.

They say sharing is caring, and ultimately I don't think people who are negative can quite grasp at all the thousand worries that surge through your mind the moment you're told. I remember feeling light headed, contemplating whether I can ever have kids, proper relationships, what my life expectancy was going to be, what my parents would say etc.... It all made a 30yo guy surprisingly docile and un-cocky! (at least for a few weeks... How do the smiley faces work again... 8)).

The awesome news is that there's plenty of people just like us. We've all been through the shock, the feeling lonely and afraid. But as I look back at the last two months, I can see a surprising amount of improvements that have resulted in what someone on this forum called "shifting" of your focus in life. And that's what it feels like; the first day was like a seismic shock, a landslide. Things felt like they were uncontrollable and going so fast it was hard to find a solid footing.

But from my current vantage point I feel really lucky in many ways. I'm pretty healthy, have started going to the gym again, am spending much more of my time with people I love and less doing nonsense I'd otherwise be prone to. I've got a new rhythm for my daily life. I'm reading more (even if just to have some awesome vivid dreams!). And I've got a new found appreciation for life. A realisation that it's too short to waste it doing pointless crap and how taking a good look at my priorities has made me realise what's really important.

I've nothing but respect for those who've lived with HIV for a long time. They've been prodded and tested on, they've done an amazing amount of work to diminish the social stigma, they've gone through meds that forced them to pop pills (or worse!) every few hours. And they've lived with some horrific side effects of the ailment and the medication. However, this isn't what we have to deal with anymore - thank God. Most meds available now don't cause wasting and innumerable other horrid side effects. Most of us seem to be plodding on pretty normally. It's just a massive challenge to cast that normality into a form that we are happy with, and live with it knowing that 90 per cent of it all is what we've made our lives into.

So in sum, hurrah for the new meds, for all the brilliant research constantly being produced, for the amazing people here who are willing to share their experiences and for ourselves too - for not letting it get to us!


"Our thoughts are free"

Offline Jeff G

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  • How am I doing Beren ?
Your super awesome good attitude will serve you well on your journey its great to hear you are responding so well to the meds .

Those of us that have lived with the virus the longest realize things are better and we benefit from the same advancement in treatment that the newly poz do . We also know from experience that more times than not it can take years to know if a new drug is any better in the long term on how it effects your mind and body than treatments past .

The damage done by treatments past is something I would do again because it meant the difference between life and death , its the same choice and chance that people beginning meds taking now and time will tell which drugs are the most effective and gentle for the long haul .

Offline London2013

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I don't want to turn this into a mutual back slapping fest, but what the hell - maybe we can be excused.

It's only because of forums like this and guys like you I can appreciate how much harder things have been in the past. We owe you a massive thank you (and a pint or two in the pub!). I absolutely hear you about the treatments: if it was a choice between waking up every couple of hours to redose, or slipping into the history books, I'm a 100pc with you. Only one option.

I hope and pray that people in a decade or so will be talking similarly about the Atripla daily dosing or cobiciscat side effects, as though it were but a mere memory. There are two things that keep my spirits up: the amazing research being constantly advanced and the realisation that I'm not alone with all this. Thanks to you and the rest of the awesome squad  ;)
"Our thoughts are free"

Offline SteveS

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London -

I am in a very similar situation to yours - similar age, recently diagnosed, very low risk for this, utterly floored, and now, surprisingly coming to peace with it and even finding the silver linings. I likewise have seriously hit the gym, changed my diet, and find my decisions and priorities shifting in response. And, i am INCREDIBLY encouraged by the new meds, research, and advances. All in all, hope is a powerful human emotion for us to hold on to. My heart breaks for all who went before with this. The best we can do for them is carry on with a good example and assistance to others. Feel free to read my "story" if it is of interest to you in the posts near yours. And let's keep encouraging one another. Like you, I have shared this with only one other person. This group here helps.

Offline exeejoe

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Hi London,  thanks for an uplifting post! :D  Now thats a proper smiley..... In a few strokes of you pen you seemed to express so much of what most of us newly diagnosed are going through.  I am recently diagnosed as well but havent been on meds yet, my biggest headache is whether I can afford it or not. So have been moving it as far as I can possible manage. Dont need the extra pressure just now, its a mad house at work and all around my private finances so.....Save for that, I am one hellova happy camper and I feel blessed to have found this wonderful people in this community.  What more can we ever ask for.  Well backpatting aside, welcome!

Offline Pontus

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  • Posts: 32
Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #5 on: June 29, 2013, 09:53:53 PM »
I absolutely LOVE your story and your outlook!!  Reading this makes me appreciate the times we are living in and the science that has gone into the medications we enjoy today.
05-17-13 - Diagnosed/ Westerblot
06-03-13 - VL=500,193 / CD4 384
06-03-13 - Gnome - no resistance
06-05-13 - Start Stribild
07-23-13 - VL = 100 / CD4 664
10-14-13 - VL = 40 / CD4 592
01-03-14 - VL = UD /CD4 784

Offline debrac

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #6 on: August 19, 2013, 06:01:47 AM »
"So in sum, hurrah for the new meds, for all the brilliant research constantly being produced, for the amazing people here who are willing to share their experiences and for ourselves too - for not letting it get to us!"

I must say that reading your story has confirmed what I believe in an what I stand for. I was diagnosed a month ago, and to be honest when the Doc told me I was hiv+ I nearly jumped out of my skin could not wake up the next morning thinking its pointless, but I'm glad have found this forum and ever since have realised just how much I can live for. I know my life is normal and I'm glad God gave me the strength to carry on and be strong, things are looking good.

I feel blessed that we have such genius scientist/researcher's that have come up with such good treatments and pray that God helps them to do more to beat this, I'm so grateful to all the guys that made it possible for me to have hope through them sharing their stories 

Offline London2013

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #7 on: December 24, 2013, 06:03:53 PM »
Travelling to the family for holidays so thought I'd wish you all a happy Christmas and drop you a line by way of an update (haven't posted in quite a while but read the forum at least once a week!).

All still going super! The meds have worked like a charm, undetectable and around 850 by way of the clever little cd4 cells. So no complaints, weirdly enough.

Just wanted to write in to say again how great it was to find the forum, read everyone's stories and hear from people. Felt that the old timers' (if you'll pardon the expression) comments were incredibly valuable: they managed very quickly to put all of this into perspective. HIV, a pain though it can be, doesn't have to be the centre of everything you say and do. Life goes on, and boy has it. It was also really good to read people in similar situation: in my case, youngish people who perhaps previously hadn't had much occasion to think about HIV and its impacts on others' lives.

My rambunctious opening note was written quite soon after diagnosis and now that it's been over half a year with popping my daily Atripla, quite a few trips out of the country, it really makes me appreciate how lucky I was to pick this early and not have anything serious happen to me. For anyone in a similar situation, I can only say that in addition to the cod liver oil pills I take religiously thanks to my mum's life-long ultimatums, the Atripla really doesn't feel like a chore at all. I think I missed it once in the last 6 months and accidentally double dosed once. But Ann's constant (and excellent!) advice made me invest in a weekly dispenser and it's just the easiest thing to check whether the pill has been popped or not (also room for cod liver tabs - hurrah!).

It's of course true that everyone with this burden has a different experience. Mine has thus far been a really straightforward experience - and I hope it will be for many others.

Before I hop off the train, some bullets on the positive things that might put HIV in context for you:

- The meds really are amazing. Different combos work for different people, but we should all count ourselves lucky to live in a time with cART is effective. Now we just need to make sure the access question is addressed in countries that still struggle

- The research seems to be moving at an unprecedented speed. The basic science is making constant leaps, we understand the reservoir better, there are vaccines and other treatments which will undoubtedly yield results in the foreseeable future. As soon as I find the time, I'll be volunteering for whatever clinical trials are appropriate and available here in London.

- This forum is full of just astonishing people. I've still got all sorts of thoughts that need to be organised, but based in what I read the prospects for all of us aren't too shabby at all! And the fact there's a community out there who will support, answer tough questions (from reinfection to bowel problems, v impressive!)  and just share their own stories is pretty amazing. Hope everyone remembered this place during thanksgiving...

And a couple of personal ones:

- My daily life really hasn't changed to the worse. Yes I had to hop to the hospital to get some vampires suck some blood out of me a few times, but my daily routine is exactly the same. If anything, I've taken more care of my health than before and even got a flu shot to make sure the people sneezing at me on the tube will be less likely to floor me with their lurgies.

- Work continues as hectic as ever but i feel I've got a much better handle on my priorities and goals. This may have been just the kick up the arse I needed!

- I've got a great set of friends  and wouldn't exchange them for a well-grafting gene therapy with or without the pokey zinc fingers.

All in all life is good. It remains finite so best make use of the time we've got. Oh, and have a great Christmas and a brilliant new year!
"Our thoughts are free"

Offline tednlou2

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #8 on: December 25, 2013, 02:57:22 AM »
Glad to hear things are well.  Merry Christmas to you.

Offline MadisonTeddy

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  • Posts: 70
Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #9 on: December 25, 2013, 08:59:43 AM »
VERY encouraging words to read for a 11 day newbie on ATRIPLA...Thanks for the follow up and hope to stay abreast of your progress...!! 

Offline ArJay

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #10 on: December 25, 2013, 10:22:19 AM »
Thanks so much for your upbeat post. I've myself just got my first lab results after being tested positive (CD4 302 and VL 44,000). Not the kind of Christmas present I was hoping for. But that's how it is; I am now looking forward to starting my meds as soon as possible.

Just wanted to say posts like yours, and so many other great people here, make it easier for me and I'm thankful.

Merry Christmas to everyone.

Offline Ann

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #11 on: December 25, 2013, 10:49:52 AM »
Thanks for the update, London! Sounds like you're doing really well.

Regarding study participation, definitely go for it. Let your doctor know you're interested in being a study subject and have him or her note it down in your files. They love it when a patient is pro-active about being a guinea pig. ;D

The clinic I go to in Liverpool is in a teaching and research hospital (associated with the University of Liverpool) and I'm asked to take part in studies on a regular basis. It usually only involves a one-off vial of blood (taken with the usual draw), but last time I was there I was asked to participate in a study that will have them taking five extra vials at every appointment for the next two years. Yes, please!

Have a great holiday season! :)

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline hivtalian

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #12 on: January 25, 2014, 03:15:26 PM »
Great story, London!:)

I really feel like mine is pretty similar...diagnosed last month after a bad 2-weeks cold with a rash and lynphonodes swelling, after some "internet studies" I got convinced that an early start of therapy is needed, both for not making me at risk of trasmitting hiv and for a psychological stuff: I wanna know I'm doing something to fight this fucking unwanted host.

I had a very bad 2 first weeks and the most awful Xmas and NYE of my life, I must confess I'v also been thinking very bad things that everybody can guess.

A first doctor told me "don't worry, just try to relax, let's take your blood to see cd4 and VL, close your mind doors about it for a while and wait for results".
Actually this sucked a lot for me. I read that last researches show the importance of an early therapy especially in acute patients, and every day passing by I was going toward a recent infection other than acute, which changes several things: virus colonising all my body and reservoirs, destructing my gut immune system and me doing nothing but waiting...!!!

Well after another research on the net, helped by a local chat friend found by chance, I discovered that in my hospital there's a very scientifically active doctor who does clinical studies for early therapy in the acute phase: I made it to have an appointment and ...the day after I started haart!

Put in a clinical study with many blood samples and a pretty tough therapy (prezista, norvir, isentress, truvada), my VL values in 2 weeks are precipitating and cd4 going up (<500000 to 4000 and 620 to 920). I'm much better with myself, felling that I'm fighting, no acute side effects of the drugs and...thanks to the research and to up-to-date doctors!!)

I'm only concerned about the fact that I should have started 1 month before if only the first doctor would have been the right one.

guys: if you have symptoms and are early diagnosed, look for an early start of therapy, or at least talk with a good id doctor of all the good and bad sides of that, so you cah choose, but before doing that you must know what's in the air in the last researches, every year, every month, there are amazing updates



Offline JosephP

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #13 on: February 02, 2014, 07:49:17 PM »
Thank you for sharing, London...My story is very similar having been diagnosed in Sept 2013...At the beginning, my head was spinning and I had no footing and my life felt very empty, without meaning. I threw myself into my job and basically didn't want to think about 'it'. Things have improved and after 2 months in Stribild, my VL had dropped to 26 and my cd4 to 290. I am more at easy... But don't get me wrong, I am still very scared, terrible scared of the infection, the medication and the road ahead! But I have a terrific doctor and her staff is best! The care I have received from them rivals none!!! Reading stories like yours (and others kind enough to share!), relieves some of the anxiety, fear and apprehension. I really haven't been sick at all. I lost significant amount of weight and doctor couldn't find problem. I don't fit the profile! It was an application for life insurance what revealed it and probably saved my life!! Reading other positive posts allows me to feel better. I have been reading these posts since that ugly, obscure and terrifying day, but never had the balls to post anything...But slowly, I am adjusting as I understand that meds have advanced tremendously and there is light at the end of the tunnel. Thanks to Ann, I will ask my doc for study participation! And yes, life goes on! And HIV doesn't have to be the center...However it is tough not to make it your center...God bless all of us and specially science...God give her intelligence and knowledge so a cure can be found! And that is something new on me...I have become a church going individual!!!
We are all dealing with this. And we will live long and productive lives!!

Offline Ann

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #14 on: February 03, 2014, 06:04:36 AM »
Hi Joseph, welcome to the forums.


Thanks to Ann, I will ask my doc for study participation!


That's great to hear! We owe it to ourselves, and also to the memory of all those who went before us (some living, some sadly no longer with us) and participated in the studies that got us where we are today. Without studies and willing participants we would still be in a very bad place indeed. Participating in studies will help us get to an even better place and hopefully someday, a cure.

You're right, life does go on and it does get better too. Hang in there, you're doing great so far. Onwards and upwards!

Ann

« Last Edit: February 03, 2014, 06:07:12 AM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline London2013

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #15 on: May 04, 2014, 07:06:03 PM »
Hello gentle folk!

It's time for my six-monthly update - I thought I'd drop a note to this thread so it's also easy to find and maybe of some use to some other newbies... So here goes!

It's not been just over a year since my diagnosis and things are looking good. There's no point sugar coating the fact that the news came as a huge blow, and the idea of having to deal with something major by way of my health wasn't easy for a relatively young guy to swallow, but along with my daily Atripla and a chunk of my pride, swallow it I have.

Let me be emphatic about the most important point: my diagnosis hasn't defined how I carry on my day to day life and if anything it's made me think about some daily choices in a more meaningful, longer term perspective than I otherwise might have. I never smoked, but I'm taking the general partying a little gentler (though if there's a good reason to let my hair down, the opportunity is clasped with two very firm hands!) and have found myself to be more rigorous about making time for myself among work and study pressures.

I have no idea how typical my journey with this "thing" of ours has been, but here's a bit of an outline in case anyone is interested or finds it useful:

Months 1-2: Bit of a shock to the system! I was upset about the news, who wouldn't be, but the awesome medical team who saw me almost weekly in the first instance were an awesome help. I found a friend I could talk about it and that was a massive help as well, but for me the most important thing was reading up on what HIV was all about, what I could do about living healthily with it and what the clever scientists were cooking up in their labs to help us all out.

Months 2-6: The news finally start to sink in and telling a few more people (like my GP and another person... Yes two people hardly sounds like shouting my status from the rooftops, I know!) made the situation more real. The fears I had about the huge impact to my life didn't come true and every new day proved pretty similar to the days before my diagnosis. If anything I wanted to make sure that they had  ire substance to them than before. I found that I had become more reflective, if not introverted, but satisfied with the realities that my health was good and I was going as strong as before.

Months 6-12 (to date): Looking back at where I started, amidst all the fear and gentle paranoia, I think the focus on seeing my own CD4 climb to above 1000 and my viral load stay UD for this whole time has really boosted my outlook. I read about new research, perhaps most recently the awesome news of the PARTNER study (?) discussing the super low risk of passing the virus on whilst undetectable and I really feel that life has loads to offer and my choices haven't been diminished by the rocky road of the first couple of months of not knowing which was was up and which down! People are getting married, having babies, getting mortgages, finding news jobs and I'm finding myself in the swing of all of that. Life has been good to me in so many ways, and to pass on my gratitude to others feels almost like a joyful duty now! I feel like I'm beating this bugger and things are looking positive, pun intended!

Now, none of us knows when the next scientific breakthrough will be announced, or whether tomorrow holds a lottery win or a car crash but by keeping my spirits up and doing more of the things that I love and trying to get away from things that drain me, I feel like living with HIV really is totally manageable. In fact (just to stir the hornet's nest...) I work really closely with a diabetic guy who pricks himself every few hours and has to inject constantly to keep his blood sugar optimal. In comparison I feel like I've definitely got something less interrupting. The daily pill and realisation it keeps me in good stead has been a really small concession (and while you ask, I'm still taking my cod liver pills thanks to my mum's ultimatum!) compared with what loads of other people are battling with!

So after my semi annual diatribe I wanted to say a couple of thanks. Firstly for the people on this forum. Though I don't post very often I read your interventions weekly. I think it's amazing that so many people are here assuaging the fears of the newly diagnosed. I also think the section on meds and side effects are great. New treatments are constantly coming up and to hear about how people are flourishing on some other therapies is inspirational, especially if pills like Atripla etc weren't right for them for whatever reason. And lastly I do enjoy reading about the research - so all of you dedicated posters keeping us abreast of the news in the field, keep on keeping on, as the dictum goes! A huge thanks to you all, and an impressed grin to those who managed to read my latest encomium!

Take care of yourselves!

« Last Edit: May 04, 2014, 07:08:42 PM by London2013 »
"Our thoughts are free"

Offline IndianPoz

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #16 on: May 05, 2014, 12:30:59 AM »
London2013 - thanks for the posts. They are very encouraging. I'm just about to complete a month on Atripla & reading posts like yours gives me tremendous hope :)
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline London2013

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #17 on: May 05, 2014, 05:20:53 AM »
Indian, thanks for the note. And I'm glad it's been of some use (sorry for the typos!).

We're all in the same boat. It's clear that different people have different journeys but when I first got the news it was great to be able to put it all to perspective. As long as you see your doctor regularly, everything will be fine. Popping the daily pill much less onerous than getting up early to go for that run or read the FT before heading for a full day's work!

And the guys (and galls!) on this forum really are great. Don't be afraid to ask whatever comes to your mind.
"Our thoughts are free"

Offline Theyer

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Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #18 on: May 05, 2014, 06:09:45 PM »
Don,t know how I missed your thread , this Londoner wishes you well , post more often , its at this point where I press Post and see your 3245 posts .
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline zach

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  • Posts: 1,446
  • not fade away
Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #19 on: May 05, 2014, 06:17:05 PM »
Hello gentle folk!

It's time for my six-monthly update - I thought I'd drop a note to this thread so it's also easy to find and maybe of some use to some other newbies... So here goes!
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Take care of yourselves!

outstanding posts london, should be required reading for tje newly dx'd, you're handling things well. hang in there man
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline everythingandnothing

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  • Posts: 10
Re: Tested + 2months ago, on meds for a month and the results are in...
« Reply #20 on: May 05, 2014, 06:27:12 PM »
I'm also glad to have read your posts, another Brit here. With respect to americans posting here, what a gift to be diagnosed here in the UK as well.

It is really curious though, I think lots of people experience what you write about, which is actually an almost exhilarating feeling shortly after being diagnosed... maybe a coping mechanism. I just remember feeling so grateful to the amazing legacy of science and activism which has given me a life today. I was not given Atripla because I was concerned about the psychiatric effects, and maybe I wish I had taken it now but three pills fly down my throat with or without a drink and I'm looking forward to receiving some results at the nearest opportunity to hopefully have some good news :)


 


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