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Author Topic: New Year. New Dx  (Read 22909 times)

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Offline zach

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Re: New Year. New Dx
« Reply #50 on: April 20, 2016, 03:43:21 pm »
The answer the nurse gave you was the best answer. On a functional level they are the same thing.

For over a year, my lab results showed my VL as "<0.04", and then a year ago they showed "Not Detected" and has stayed consistant

Same test, same equipment.

There are two things to consider, the ability and sensitivity of the testing equipment... and the ability of the virus to infect.

Ten years ago, equipment and tests were only sensitive down to 500, below that was by definition undetectable.

Today, if you're willing to pay the prohibitive cost, there are tests sensitive down to 2.

Far more important to focus on, at what point is VL low enough that transmission risk is eliminated.

You've essentially reached that threshold, but stay there for awhile before you start thinking you aren't infectious though.

You probably have a VL between 20 and 40 right now. The bug is taking it's last gasps.

Offline Tonny2

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Re: New Year. New Dx
« Reply #51 on: April 20, 2016, 04:26:17 pm »


          OJO       HELLO MY FRIEND CAVEYUK...DON'T BE PERPLEXED, BE HAPPY, YOU ARE UNDETECTABLE...WAY TO GO...CONGRATZ AGAIN...ABRAZOS                 OJO

Offline johnfreakingsnow

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Re: New Year. New Dx
« Reply #52 on: June 29, 2016, 03:08:02 am »
Thanks everyone!

One silly question though. When it was texted through to me, it was listed as 'VL <40'

I emailed the clinic to ask for confirmation this was UD (knowing it is, by all definitions I've read), and the nurse specialist replied to say they see this as 'virtually undetectable'. I queried the use of the word 'Virtually' in this context, and she has replied to say that on some machines that measure blood you can get a 'non detected' result.

This has perplexed me a bit. Is it, for all intents and purposes, the same? I presume from my result that the machine used to measure this in the lab had a detection limit of 40, and being under this makes me UD - but I'm concerned that the clinic (well, the nurse), doesn't seem to share this view....

Cave, first of all im very sorry to hear about your story and i wish you a very happy and healthy life and hopefully with advances in treatment and also the hope and hype over cure im sure you are going to have an amazing life.
Bro i have read your post and also read somewhere else that you mentioned about your symptoms. its very similar to mine, though i have been tested negative up to 9 months but i have read so many posts in here that people do get infected with having protected sex and also having numerous negative results so i just wanted to know your opinion, did not know how to send you a direct message so im asking you here and im sorry in advance from everyone if im posting this in the wrong place.
I had protected sex and unprotected oral more than 5 times in 2013 and had no exposure or sexual activity whatsoever till this october that i met escorts again and had protected v and oral. at 3 months mark i had very bad flu and cough that lasted 3 weeks, then at 4 months join pains, just knees, then at 5 months burning chest and then as you mentioned somewhere very bad dry mouth. i always had this sort of white tongue but now i notice it more than ever but its not OHL, a dentist and two doctors said its not thrush but not sure of their judgment. then had HEPC, TB and HIV negative at 8 months. but now i have these RED bumps on my chest and shoulder and one on my arm. i went to dermatologist and she said its infection at the root of hairs. but you had the same. I really dont know what to do. my symptoms are very much like you and i tested neg at 8 months and dont know what to do :(


Offline zach

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Re: New Year. New Dx
« Reply #53 on: June 29, 2016, 03:22:31 am »
 @johnfreakingsnow

you're not permitted to post on this side... you know that too, jim told you. you ran out your three free posts, and now you're trying to be slick

he also told you that you had no risk, don't come over bothering us, there is a reason you're not allowed over here

you've tested negative... get a grip.

last... mods, damn it, the am i posters shouldn't be allowed to pick cool usernames... that is all

just so you've been told twice

Please Note.
As a member of the AM I Infected Forum you are required to only post in this one YOUR thread no matter how long between visits or the subject matter. You can find this thread by going to your profile and selecting show own post and it will take you here . It helps us to help you when you keep all your thoughts or questions in one thread and it helps other readers to follow the discussion. Any additional threads will be deleted.
« Last Edit: June 29, 2016, 03:25:40 am by zach »

Online Jim Allen

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Re: New Year. New Dx
« Reply #54 on: June 29, 2016, 06:14:17 am »
@johnfreakingsnow

You have been issued a warning, this is your final warning.
If you post outside of your thread for whatever reason again it will lead to a permanent ban.

You have been warned.

Jim
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Offline CaveyUK

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Re: New Year. New Dx
« Reply #55 on: July 27, 2016, 07:41:56 am »
Ok, spoke to the clinic today. Some good news and potentially bad news...

Good news - I can stop the septrin (co-trimoxazole) as I've been UD for a while now and last CD4 count was over 350

Bad news - During my routine blood analysis they detected my glucose levels to be slightly higher than normal range at 7.7. They have asked me to speak to my GP to arrange a HbA1C test for diabetes.

The nurse specialise stressed that I shouldn't be too alarmed, but I can't help it really....

Especially as I have two holidays coming up in quickish succession. Not really what I wanted to hear :(
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Offline Wade

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Re: New Year. New Dx
« Reply #56 on: July 27, 2016, 08:13:29 am »
Hey Cavey,
The good news is great !
The bad news is not that bad , slightly elevated could just mean changes in your diet
or nothing at all . Mine have been border line at times over the years and i am not a diabetic .

In anycase it shouldn't affect your holidays ...enjoy yourself  8)

Best, Wade
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Offline CaveyUK

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Re: New Year. New Dx
« Reply #57 on: September 20, 2016, 12:03:24 pm »
Just spoken to my doctor with my results.

Not terribly happy with my CD4 as I was expecting a little more of a jump. Six months ago it was 354 and now it has climbed to 432. Thought it may be higher than that to be honest. CD4% has gone from 22 six months ago to 28

Am still UD, which I know is the most important factor

Still annoyingly slow climb
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Offline virgo313

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Re: New Year. New Dx
« Reply #58 on: September 20, 2016, 12:29:06 pm »
Hi Cavey,

I remember you were the 1st person that reply my 1st post. Part of it are - "but even small incremental increases will be boosting your system and helping you on the track back to full health." :)

I know how it feels wanting to see more increase. But end of the day, we all are getting better, i guess that is more important. Cheers..!




RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Tonny2

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Re: New Year. New Dx
« Reply #59 on: September 20, 2016, 12:54:45 pm »
Just spoken to my doctor with my results.

Not terribly happy with my CD4 as I was expecting a little more of a jump. Six months ago it was 354 and now it has climbed to 432. Thought it may be higher than that to be honest. CD4% has gone from 22 six months ago to 28

Am still UD, which I know is the most important factor

Still annoyingly slow climb

        OJO      HELLO MY FRIEND CAVEY, YOU GOT TO BE PATIENT ALTHOUGH IT'S A NICE % INCREASE...YOU HAVE COME A LONG WAY MY FRIEND, IT TOOK ME ALMOST NINE YEARS TO CROSS THAT 300-400 BARRIER, NOW I'M IN THE 600 AND 32%...HANG IN THERE, STILL UD, THE MOST IMPORTANT THING...LOTS OF HUGS
                                                                                                                                                      OJO                                       O

Offline CaveyUK

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Re: New Year. New Dx
« Reply #60 on: September 20, 2016, 06:26:08 pm »
Thanks guys. I'd all but forgotten about CD4 anxiety since they didn't take one last time. Now I'm tense about it all again :)

The key thing is the VL and staying UD I know.
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Offline CaveyUK

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Re: New Year. New Dx
« Reply #61 on: December 13, 2016, 08:50:34 am »
Just been for my clinic visit. All seemed fine, but the doctor has now done a U-turn in switching me from Truvada to Descovy.

Apparently, the latest guidelines are to only switch people who have a clinical reason for the switch (ie. worsening kidney function or bone density problems), which doesn't apply to me. Although Descovy is currently cheaper to the NHS than Truvada, the older drug moves off-patent next July so much cheaper generics will become available. It is this that is driving the guidelines.

This tallies with reports I am seeing from other parts of the UK where they are starting to switch people to generics where possible, for example moving people on Triumeq to two pills - Dolutegravir and a generic lamivudine/abacavir pill.

It's not an entirely unexpected move due to the cost-crunch the NHS is facing, but it will be interesting how Gilead reacts to this in terms of pricing moving forward if the UK basically starts moving away from the costly new drugs, given that the previous generation drugs are now so well tolerated and effective.
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Offline Wade

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Re: New Year. New Dx
« Reply #62 on: December 13, 2016, 08:58:11 am »
Sorry to hear that Cavy, it all revolves around money sadly enough.
I'll be surprised to see a generic for Descovy anytime soon
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Offline CaveyUK

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Re: New Year. New Dx
« Reply #63 on: December 13, 2016, 09:23:16 am »
Sorry to hear that Cavy, it all revolves around money sadly enough.
I'll be surprised to see a generic for Descovy anytime soon

Thats the point though. Truvada leaves patent next July so will be available via cheap generic versions. Descovy is a new drug so won't be. Right now, Gilead are pricing Descovy cheaper than Truvada to try and get people onto that medication, but clearly the NHS is not falling for this and is instead keeping people on Truvada and moving them over to generics when available, and only providing Descovy where there is a clinical need.

The interesting angle, which could be a bad one for HIV medication progress in a way, is that given the current 2016 medications are so good, so well tolerated and so effective, then the benefits of switching to a new formulation (like Descovy) are small or non-existent for most people, yet the cost of provision is comparatively high. If the same approach is followed in other countries (and Germany has recently prevented the approval of Descovy for standard prescription too) then how will Gilead react to the smaller market share and will this affect pricing policy?

Years ago the benefits of the new vs old drugs were huge. Nowadays not so much.

Of course, if you follow that logic to it's conclusion and reduce the profit of the drug companies then this could have an effect of slowing down development of HIV drugs, so it's a double edged sword really.

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