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Author Topic: Diagnosed 2 Weeks Ago  (Read 4192 times)

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Offline Mike01

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Diagnosed 2 Weeks Ago
« on: April 27, 2023, 06:30:25 am »
Hi Iím Mike.

I was diagnosed with HIV just over two weeks ago. Itís been a shock. Iím struggling with a lot of different emotions. I feel ashamed of myself I know itís my own destructive behaviours that have left me in this situation.

Thankfully I have a wonderful partner who wants to stick by me and even more thankfully so far she has tested negative.

I donít feel like I can talk to anyone about this so thatís why I decided to join the forum. I can talk to my partner but Iím trying my best to put a bit of a brave face for her.

I had lots of blood taken for various tests last week and have an appointment tomorrow, I believe to go through these results and begin treatment.

Iím worried about the future, the people at the clinic keep telling me I just have to take the medication and I can live a normal life but Iím concerned they sugar coat it a bit.
I donít fully understand how this is going to change my life, I would give anything not to have caught this.

Life has been getting on top of me the last few years and this feels like another blow and one of the worst yet.

Iíve been reading a lot of the posts on here the last couple of weeks and itís been helpful to know Iím not alone in this situation.

Thank you, Mike

Offline Jim Allen

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Re: Diagnosed 2 Weeks Ago
« Reply #1 on: April 27, 2023, 08:01:02 am »
Hiya,

Sorry to hear about the diagnosis, but glad to hear that your partner is supportive.

Quote
I had lots of blood taken for various tests last week and have an appointment tomorrow, I believe to go through these results and begin treatment.

Keep us posted on the results, viral load & CD4 and what medication you are started on. I presume, as you don't have lab results yet, the diagnosis was based on an antibody test result.?

I will kindly ask you to only post in this one thread until you have the lab results. Thanks.

Quote
I donít fully understand how this is going to change my life, I would give anything not to have caught this.

Well, that is largely up to you. HIV hasn't impacted my day-to-day life at all; Since my diagnosis, I have had two kids, got married and separated, dated again and fucked everything that moved for a while, travelled the world, lived in three different countries and had a good career.

Nowadays, treatment is started at diagnosis, and with such easy meds compared to the past, generally speaking, there are far worse things that people can have and will experience than HIV in life sooner or later.

Every six months, I visit the clinic (vampires); that's about as inconvenient as I let HIV be in my life. Everything else about HIV in my life is relatively minor and manageable.

So it's up to you.

Quote
Life has been getting on top of me the last few years

Sorry to hear you have been struggling, and I hope things get easier or at least more manageable.

Quote
Iíve been reading a lot of the posts on here the last couple of weeks and itís been helpful to know Iím not alone in this situation.

Glad the forum is helping.

Keep us posted on how you are doing and the lab results.

Quote
I can talk to my partner but Iím trying my best to put a bit of a brave face for her.

Well, an HIV diagnosis can feel overwhelming and is a lot to digest at first. Give yourself time and your partner to digest things.

Best, Jim.




« Last Edit: April 27, 2023, 08:06:14 am by Jim Allen »
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Offline Tonny2

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Re: Diagnosed 2 Weeks Ago
« Reply #2 on: April 27, 2023, 08:04:54 am »

           ojo.            Hello there!, welcome to the forum, you are not alone anymore, you can count on us for so far and information. Can I ask you what made you get tested for HIV?. Were you sick?Ö I guess you donít know itís your viral load level or cd4, but I am sure you are going to be fine as soon as you start treatment. Nowadays living with HIV is like living a normal life as long as you take your medication as prescribed. Events you can have children as you wish. Try to relax we all know how difficult it is to hear, the diagnosis, but trust me, you are going to be fine. I am glad that your partner is with you supporting you, and now we are here for you too. Please keep us postedÖ make a list of all the questions you may have about this condition so you can ask the doctorÖ good luck tomorrowÖhugs
« Last Edit: April 27, 2023, 08:06:49 am by Jim Allen »

Offline leatherman

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Re: Diagnosed 2 Weeks Ago
« Reply #3 on: April 27, 2023, 11:01:43 am »
Hey Mike, I'm Mike! LOL

There are sooo many Mikes in the world. So many I'm Mike B. and I once used to date a Mike B. It was so confusing

Iím worried about the future, the people at the clinic keep telling me I just have to take the medication and I can live a normal life but Iím concerned they sugar coat it a bit.
They're not wrong and they didn't sugarcoat it. ;)

My husband (not a Mike) and I have both been living with HIV for 40 years and taking meds for about 30 years. Quite frankly, with no modesty about it all, at 61 years old, I'm happier, healthier, and much better looking for my age than any other 60ish person I've met. Since my b-day was last month, I made the Planet Fitness staff play the "how old do you think I am?" game when their system announced it my was birthday. I'm very glad to say that their guesses between 51 and 53 helped me tolerate my workout on that damned elliptical. LOL


It's very good your partner already got tested. It's always best to get diagnosed and onto meds as soon as possible. Speaking of your partner and meds, when you start taking your daily HIV meds, it will stop HIV from replicating and your viral load (the amount of HIV in your system) will go down. When your viral load has gotten to "undetectable" and stayed there for 6 months, you will no longer transmit HIV. That should help alleviate any issues about having sex. But until then, make sure to use condoms for safer sex ;)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Mike01

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Re: Diagnosed 2 Weeks Ago
« Reply #4 on: April 27, 2023, 12:07:46 pm »
Thanks for all the replies itís appreciated.

I was told I have been diagnosed so assume they have already done the further tests for that, they sent blood to a laboratory for testing before telling me I had HIV, from my understanding the second time they took blood (a lot of blood) was for lots of other tests viral load, cd4 count also they said other things like kidney function, there was too many to remember.

I went to the clinic for a different issue I was having and they asked if I would do a full std check and thatís how this came about. I had done at home rapid tests in the past the were negative and they did a rapid test while I was there the first time which was negative so it was quite a shock when they called me saying the lab test was positive.
Iím confident of what Ďactivitiesí in my past caused me to catch it. Itís my own fault you never think this will happen to you.

I guess one benefit is living in England so all the treatment is on the nhs.

I guess I will understand better tomorrow.

Iíve cut my alcohol consumption drastically since finding out and been eating better, My theory is I can try and counteract having hiv by sorting out other aspects of my lifestyle, I had got to the point I drank pretty much every day (usually only 4 pints max during the week and then heavier drinking on the weekends) not an alcoholic or anything but Iím sure drinking like that for the rest of my life would probably cause more issues than living with hiv on medication.

Me and my partner have started using protection, we have only had full sex once since we found out, I did feel a bit nervous doing it, Iím really anxious about passing it onto her.

Will keep you guys updated with what they say.

Offline Jim Allen

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Re: Diagnosed 2 Weeks Ago
« Reply #5 on: April 27, 2023, 12:53:12 pm »
Quote
Iíve cut my alcohol consumption drastically since finding out and been eating better, My theory is I can try and counteract having hiv by sorting out other aspects of my lifestyle, I had got to the point I drank pretty much every day (usually only 4 pints max during the week and then heavier drinking on the weekends) not an alcoholic or anything but Iím sure drinking like that for the rest of my life would probably cause more issues than living with hiv on medication.

Are you still drinking daily?

Four pints a day and adding four more for Friday and Saturday is 36 pints or 97.2 units. It's excessive, regardless of HIV status; at that level of drinking, you are at risk of developing alcohol-related problems.

With HIV, well, you can drink, have the odd pint and enjoy yourself, but it's additionally bad for you and not drinking isn't going to change or slow the damage HIV does on its own, but drinking and HIV even when you do start HIV treatment and suppress HIV is bad.

https://www.poz.com/article/alcohol-buzz-27115-1109
HIV Is Linked to Getting a Buzz on Less Alcohol

https://www.poz.com/article/safe-alcohol-people-hiv
How Safe Is Alcohol for People With HIV?

https://www.poz.com/article/even-one-two-drinks-day-can-harmful-people-hiv

https://www.poz.com/article/drinking-may-exacerbate-bone-loss-people-hiv
« Last Edit: April 27, 2023, 01:15:25 pm by Jim Allen »
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Offline Jim Allen

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Re: Diagnosed 2 Weeks Ago
« Reply #6 on: April 27, 2023, 01:03:41 pm »
Quote
I was told I have been diagnosed so assume they have already done the further tests for that, they sent blood to a laboratory for testing before telling me I had HIV, from my understanding the second time they took blood (a lot of blood) was for lots of other tests viral load, cd4 count also they said other things like kidney function, there was too many to remember.

No, but that second lot of blood that was sent off would include many things including confirmation testing. You don't need to ask for that though at the clinic, when you see the clinic they will share the results with you such as viral load and CD4 count and start you on treatment.

Quote
I guess I will understand better tomorrow.

Yeah, the clinic will go through the results with you and treatment options and how to take your meds etc. Take a pen and paper with you, write down questions you have beforehand and write down anything you find important, although they should give out sheets with things like the meds considering you are new to this.

Quote
Will keep you guys updated with what they say.

Yeah, please do check back in.

We have a monthly forum virtual gathering this  Saturday at 3 pm UK time. Once you have the lab results you would be more than welcome to join, it's a nice little support group and it might help you to talk to others.
https://forums.poz.com/index.php?topic=783557;topic=76748.50

If anyone who has not already signed up wants to join, just let me know here or through PM, and ill add you for the upcoming meet.

POZ Virtual gathering, Saturday, 29th April 2023.

Meeting time:

07:00 PDT
08:00 MDT
09:00 CDT
10:00 EDT
15:00 Ireland
16:00 CEST
16:00 CAT (Central Africa Time)
19:30 IST
00:00 ACT (Australia, Sunday, 30th April)
« Last Edit: April 27, 2023, 01:09:11 pm by Jim Allen »
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Offline Jim Allen

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Re: Diagnosed 2 Weeks Ago
« Reply #7 on: April 27, 2023, 01:18:38 pm »
P.S. Just to be fair and before one of the other forum members points it out to you, I am an alcoholic.
HIV 101 - Everything you need to know
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Offline Mike01

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Re: Diagnosed 2 Weeks Ago
« Reply #8 on: April 27, 2023, 01:59:35 pm »
Iíve stopped drinking completely during the week the past two weeks. Last weekend I had about four pints on Friday Saturday and Sunday.

Iíll read the stuff about alcohol. This happening has shook me up a bit to looking at other aspects of my lifestyle.


Offline leatherman

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Re: Diagnosed 2 Weeks Ago
« Reply #9 on: April 27, 2023, 02:07:22 pm »
you'll get a lot of results back from the bloodwork - and most of it really isn't HIV related. They're checking on your cholesterol, iron, potassium, etc. Sure some of that will have been affected by HIV, but with treatment, all the HIV affected stuff should get back to normal.

The HIV numbers will be viral load - the smaller the better. Although it doesn't mean zero, undetectable is the goal to reach with treatment. And the cd4 count - that's a quantity measure of the part of your immune system that HIV attacks. having that 200 and higher is the goal that daily treatment will get for you.

While there's no med to change your cd4 count, there are things you can do to improve it - and they're the basic things: reduce stress, stop smoking, stop drinking, exercise, etc.  Of course you don't have to do any of those or you don't have to completely do any of those. But improving those situations is only helpful to you.

Personally I'm of the belief that moderation is the key. I eat my broccoli to eat the cheesecake. I'm going to Plant Fitness to offset the margaritas I'm drinking tonight. Got bad habits? (like that excessive drinking? or maybe smoking) Well, you definitely ought to work on those; but don't try to stop cold turkey. (unless you have a doctor or program to assist you) Just start improving by drinking one less a day.

Taking HIV meds daily is going to mostly remove HIV from your health concerns, giving you the time, and hopefully, the incentive to fix other health issues in your life.

This happening has shook me up a bit to looking at other aspects of my lifestyle.
You wrote this while I was writing the above.

You, and many of us, may actually end up healthier. Not only will the HIV treatment get you more regular doctor visits but those visits will result in a quicker catch of any negative health problems. People who rarely visit a doctor often don't know about any impending problems until very late.

And, as you pointed out, HIV will make you focus on your own health status and try to improve it. When people get more concerned about their health, they often get healthier from their efforts to improve their health.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Mike01

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Re: Diagnosed 2 Weeks Ago
« Reply #10 on: April 27, 2023, 04:10:05 pm »
I think moderation will definitely need to be what I try and do I donít think Iím ready for cold turkey 😅

Offline leatherman

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Re: Diagnosed 2 Weeks Ago
« Reply #11 on: April 27, 2023, 09:06:25 pm »
I donít think Iím ready for cold turkey 😅
cold turkey is only good for sandwiches ;)

I'm sure all this is worrisome for you right now and pretty overwhelming; but you've been diagnosed and you're moving forward. Forward motion is always good, so give yourself a pat on the back.

However, good change is a process that takes time and determination. Keep moving forward, use us as support for things you don't know and things you need to know and in time things will be better and you'll (hopefully) be on track for a "normal" life. ;)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Mike01

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Re: Diagnosed 2 Weeks Ago
« Reply #12 on: April 28, 2023, 07:21:19 pm »
So I went back to the doctors today, they didnít actually give me a print off of the results but the doctor read all the results to me and told me what medication she wants me to start.

From what i remember she said my cd4 count is 800 and my
Viral load was 3 or 4 thousand, she said this is good, that up until this point my immune system is working well and the low viral
Load is probably why I havenít passed it onto my partner. You guys probably have a better understanding of this than me.

She also said my liver function is good (she seemed as surprised about this as me considering my drinking habits over the past few years) kidney function is good, Iím resistant to one of the hepatitis I think she said a?

Urine test all clear and healthy.

So overall it seems Iím in good health apart from the fact I have HIV.

She has suggested I begin delstrigo. I asked if this was the most common one they prescribe she said no, so I asked why she was suggesting this and she said because itís only one pill and I can chose any time of the day to take it with or without food, little side effects so more likely to adhere to it. Iím slightly suspicious that itís a cheaper option and thatís why the nhs would suggest it? Do you guys know what it is?

I took a picture of it hopefully I can work out how to post on here.

Iíll be able to collect 3 months worth on Tuesday from a hospital, Iím booked in to have blood tests in one months time, she said this was Ďsafety bloodsí I guess to check Iím not having any bad reactions to the medication, then I have another appointment in three months to check viral load and cd4 count, then I will move to every 6 months.

She said after each 6 monthly appointment I will get 6 months supply of medication delivered to my house, the nhs have a specialist courier company that deliver the medication as long as you keep to your check ups.

She said looking at my results today she is confident I will be undetectable within 3 months.

Iím feeling relatively positive about the situation, itís done now I canít change it and I have no one to blame but myself. I guess I should be thankful I live in a country where within a few weeks all these tests have been carried out and Iíll begin treatment so quickly.

At least knowing the situation I can prevent giving this to someone else.
Hopefully in time it just becomes as simple as taking a pill and not really thinking about it other than that.


Offline Mike01

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Re: Diagnosed 2 Weeks Ago
« Reply #13 on: April 28, 2023, 07:22:34 pm »
Not sure how to post a picture but Iím pretty sure the medication name was spelt right.

Offline Jim Allen

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Re: Diagnosed 2 Weeks Ago
« Reply #14 on: April 29, 2023, 05:17:06 am »
Not sure how to post a picture but Iím pretty sure the medication name was spelt right.

Doesn't it have the name on the side of the bottle?

Quote
She has suggested I begin delstrigo. I asked if this was the most common one they prescribe she said no, so I asked why she was suggesting this and she said because itís only one pill and I can chose any time of the day to take it with or without food, little side effects so more likely to adhere to it. Iím slightly suspicious that itís a cheaper option and thatís why the nhs would suggest it? Do you guys know what it is?

https://www.poz.com/drug/delstrigo
https://www.poz.com/basics/hiv-basics/hiv-medications

So Delstrio is one of the many one-pill-a-day options you can take with or without food. It contains doravirine + tenofovir disoproxil fumarate + lamivudine

There might be other medical reasons that your doctor is excluding other one-pill-a-day combinations for you. An example could be hypersensitivity or drug resistance profile.

Quote
Iím slightly suspicious that itís a cheaper option and thatís why the nhs would suggest it?

Cheaper for the UK, I don't know, maybe depending on how the UK is buying its meds nowadays, but from a treatment point of view, its approved as a first-line treatment within the EU and the UK.

However, your doctor is generally incorrect in saying it's the only once-a-day treatment option available in England. However, I know that NHS England did start switching people to cheaper drug combinations or 2nd line (older) drug combinations from 2016 onwards when possible and avoiding more expensive options for people starting treatment, such as those containing DTG (Doltravier) if possible. 

I don't know if this cost-saving measure is still the case, but I can't imagine the NHS deciding in the current climate spending more money than it needs to on HIV.

See thread https://forums.poz.com/index.php?topic=66173.msg and page 12 from this NHS publication: https://www.ukcab.net/wp-content/uploads/2017/04/Use-of-generic-medication-a-commissioning-perspective.pdf



« Last Edit: April 29, 2023, 07:47:29 am by Jim Allen »
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Offline leatherman

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Re: Diagnosed 2 Weeks Ago
« Reply #15 on: April 29, 2023, 07:05:10 am »
You might want to ask your doctor about electronic medical records. Here in the USA, thanks to the Affordable Care Act, all medical records are now being digitized. We no longer get printouts (saving those trees!) and can access our medical records through an online account.

Cheaper option? And what would be wrong with that? Especially when the medication is a first line option. It costs $75 a year to treat someone in Africa with HIV, while it costs well over $39,000 to treat someone in the USA for a year. Guess which country, in times of an extreme financial crisis, might be the first to stop paying for treatment? I know that's kind of comparing apples to oranges; but someone has to pay for our treatment (ourselves, insurance, the government) so why shouldn't the more cost-effective, medically-effective medication be the drug of choice?

Of course, if this medication doesn't work well against your HIV, or has negative side effects that won't resolve in time, taking this medication at the start leaves ALL the other possible medications open to be used. So taking the "cheaper option" is not a bad option at all. ;)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Mike01

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Re: Diagnosed 2 Weeks Ago
« Reply #16 on: April 29, 2023, 03:02:32 pm »
I donít get the medication until Tuesday, so I was trying to spell it while jumping back and forth from a picture of a leaflet the doctor showed me while I was there. My spelling isnít great  ;D

Iím happy to take to whatever works, she told me it wasnít the most common medication they subscribe so I got suspicious it wasnít as good or something.

Either way it looks like things are heading in the right direction, I still keep getting hit with these feelings of dread out of no where but Iím sure that will going pass with time.

Thank you for your responses to the thread. Itís good to talk.

Offline Tonny2

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Re: Diagnosed 2 Weeks Ago
« Reply #17 on: April 29, 2023, 03:57:13 pm »











              ojo.              Hello there!, it takes time too digest an hiv dx but, as you said, with time and when you start treatment and get your first lab results, you will feel better and. You will start to learn how to live with hiv, it takes just one vitamine a day to take control of your life again and keep making plans for the futureÖbe a fighter, not a victimÖkeep us posted and , your numbers are goodÖhugs

Offline leatherman

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Re: Diagnosed 2 Weeks Ago
« Reply #18 on: April 29, 2023, 07:32:23 pm »
Iím happy to take to whatever works, she told me it wasnít the most common medication they subscribe so I got suspicious it wasnít as good or something.
There are quite a number of different HIV meds available these days. The choices for a first medication are pretty numerous too. Factors can include cost, availability and what a doctor has experience with.

Your doctor may have numerous patients who have done well on a certain medication with little-to-no side effects. That experience could lead to them offering that medication first. I say "first"; because that's the good thing about HIV treatment today - if there are any issues with taking one med, there are always other possibilities to try. Really no one treatment is better than another. The only issue is whether it works for you or not. ;)

I still keep getting hit with these feelings of dread out of no where but Iím sure that will going pass with time.
Trust me when I say/type this; but the early days are the worst and it definitely gets better. Before you were diagnosed I'm sure you never considered the ramifications of HIV - how you would feel about it, how it would be treated, what to expect in the future. Right now that's what's going through your mind. But (I'm sure it'll be sooner but I'm using it an as example) by this time next year, you won't care about any of that. Popping a pill a daily and getting on with your life as usual will be old hat. You won't be stressing about useless worries (like getting sick), your partner will be protected because you'll be undetectable for more than 6 months, and your life will be whatever you make of it. :)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline kentfrat1783

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Re: Diagnosed 2 Weeks Ago
« Reply #19 on: April 29, 2023, 08:57:57 pm »
Hi Mike,

How are you doing today?  I hope doing well and you are able to digest all the inforamtion you are getting from us and your doctor.  It is a lot to start but always ask questions if you are confused. 

From what i remember she said my cd4 count is 800

I hope to see 800 CD4's at some point but I don't see that anytime soon. 

The key is to see how your numnbers increase over time, but then again your numbers are in a great starting point.

Iíve stopped drinking completely during the week the past two weeks.

From my past I also drank a little more then I should have.  I was doing 10-12 beers (12 oz) 5+ nights prior to diagnosis, and quit cold turkey due to a hosptial stay and other issues but my Infectious Disease doctor was worried this this.  With everything going on in my body she was worried it could put me into shock.  She said it was OK to drink but to do it in moderation.  Over the years I've worked down to every other week on a Friday and I feel much better. 

My suggestion is to be open and honest with your doctor about your drinking.  That you have stopped and if you want to stop drinking or if you will start it back up.  This does help to watch out for issues down the road and to fully understand your medical history. 

It took me a little time to find a speiclaist that I trust and that is key.  I also needed someone that woudl spending more then 30 second with me.  Not that I need that full hour I get now but a good 15-20 minutes is good to start. 

I wish you the best and if you are up to joining our next chat we would be happy to have you join us.
Date - CD4 - Percent - VL
08/23/23 - 366 - 26%
06/20/23 - 349 - 21% - UD
04/15/23 - 229 - 19% - <20
11/14/22 - 486 - 24% - 73
10/12/22 - 316 - 19% - <20
06/20/22 - 292 - 21% - <20
01/25/22 - 321 - 22% - <20
09/22/21 - 278 - 19% - <20
02/02/21 - 225 - 19% - <20
06/08/20 - 257 - 20% - <20
03/17/20 - 285 - 19% - 101 (2.00)
12/17/19 - 290 - 20% - <20
09/17/19 - 218 - 16%
06/18/19 - 173 - 16% - <20
03/13/19 - 170 - 16% - <20
January 2019 - Started Triumeq
12/05/08 - 174 - 18% - <20
08/28/18 - 166 - 15% - <20
05/08/18 - 106 - 11% - <20
03/05/18 -   90 - 10% - <20
12/11/17 -   60 -   8%
09/07/17 -   42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11/17 -    2 -    1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline Mike01

  • Member
  • Posts: 8
Re: Diagnosed 2 Weeks Ago
« Reply #20 on: June 20, 2023, 06:46:54 am »
Just thought I would update in case anyone is interested. I had my latest blood test results and I am already undetectable.
Iím still a bit up and down mentally but itís good news.

 


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