Neely diagnosed 12/13

[Aaron55]

12/13/22 is what seems to be one of the worst days of my life. I am in a committed relationship and strayed , twice. My long time partner and I have not been intimate in 2-3 years due to a medical condition of his, and I could not control myself. The worst mistake of my life I feel.
Thinking I asked all the right questions, and feeling a sense of trust from my encounter, I did not use protection. Big mistake.
I’m 55 and never thought I would find myself here. I’m scared, ashamed and feeling a slew of other emotions including self harm.
My partner was the first person I told, he has no worries about himself as we are no longer intimate. He is very hurt (understandable) and sad, and can’t understand why I had to seek comfort with someone else.
To me this was not an emotional experience, only sex. I’m ashamed.
I don’t understand what happens next. My next Doctors appointment will be 01/04/2023. I don’t know what to expect other than being put on medicine of some sort. I just received my blood work results and I do not understand what everything means, there’s so much it’s very overwhelming and I’m scared. From reading posts I gather cd4 counties important. Mine are 160, but I’m not sure how good or bad this is.
Questions going through my mind:
Will this be my last Christmas?
Side effects of medication?
What should I expect from my friends and family should I choose to share this news?
Any advice anyone? I’m devastated , sick to my stomach and feeling horrible.

[Tonny2]

                ojo.            Hi there!!!




I’m sorry to read about your dx. Hiv doesn’t discriminate, he doesn’t matter if you are young, or older, if you have unprotected sex, you run the risk to acquire HIV. what is your feeling right now, all in here, has gone through the same when we got the same diagnosis. So relax, try to forgive yourself and wait until you see your doctor.





You will spend lots of Christmas with your family and friends. Everybody is different about getting side effects from the meds, you will have to wait and see, you may feel side effects or nothing at all.



If there are good news after getting an HIV diagnosis, this is the time to get it, even though getting an HIV diagnosis is difficult to digest, right now there are threatments easy to take, one pill a day, effectives, not too ricics but, more importantly, live savers, as long you take your med as prescribed, you will be fine.


Your cd4 de ndicates you have AIDS, which means you will get additional meds, antibiotics, to prevent opponent rtunistic to nfections like pneumatic is nfections like pneumonia (pcp). Don’t be scared to read aids, now a days it’s called acute hiv infection because as soon you start treatment, your viral load will be suppressed and your cd4 will increase with time.



Iknow it’s difficult that deal with the dx, we akways think, why me, you should ask yourself, why not me, eventhough you know why you acquired the virus, having unprotected sex, but, I think, you have to accept that you made a mistake and forgive yourself if f you want to keep looking forward and learn how ti live with the virus, the sooner you do this, the faster you will gi back to take control of your live because your neds will take care of the virus, as i said before, as long you take your meds as order by your doctor, also, having a good attitude helps. You want to be a victor not a victim, comprende?.



Good luck, but the way, i hope yoyr partner forgives and suppirts you and, you don’t have to tell anyone about your “hemorrhoids” at least you have digested completly your dx, as soon as you see your ID doctor and get some blood work results from “Dracula”, after being on treatment for a while, i bet you, you will feel better….please keeps us posted and don’t try to harm yourself be cause you already did it, but you will come back from this  alive and living a normal life as I’ve been doing myself for the last 28 year living with this partner whose has only be the only one who has put up with me, that has to be love. Hehe
Hi n

[kentfrat1783]

Hello Aaron,

It is defiantly not the Dx any of us want to get but the sooner you get a Dx and start treatment the better.   

First off, I am sure that you will have many more Christmas's and other holidays with your friends and family.  This is not the death sentence that it once was. 

I wasn't getting checked regularly and only found out after getting PCP pneumonia that caused other complications.  I wish my doctor would have done a yearly test on me but she didn't'. 

The fact that you are having your follow-up appointment so quickly is great so you can find out what is best for you.  Don't be surprised if additional bloodwork is done but please write down a list of questions you have to be answered.  Don't think any question is silly or shouldn't be asked. Yes, the specialist has heard them over and over but this is your first time.  Don't feel silly for asking your questions.

And not to freak you out the Rx's are expensive but many times you can work with the manufacturer to get assistance with the Rx's cost so work with your pharmacist on this.  Also depending on your insurance they may encourage you to do it through their mail order pharmacy but I do mine through my local pharmacy.  I just don't want it to get lost in the mail. 

Lastly, if you don't feel comfortable with your specialist it never hurts to seek out another opinion as I did.  I feel so much better with my new specialist even with the drive.  My CD4 count started very low and needed extra care and the ability to answer my question.

I do wish you the best in the new endeavor and i hope you and your partner will be able to grow together. 

Kenneth

[Aaron55]

Thank you both for sharing your knowledge and personal information. I am lucky to have a forgiving partner who has agreed to stand by me. After reading your responses, and other posts, I am feeling a tad bit better mentally, but it’s not going to be easy.
Aaron

[Quint1976]

Hi Aaron,

Hearing for the first time you're hiv positive is kinda like the world is ending, that you have nothing left but to die.
All the emotions and questions that go through your head are normal responses to your diagnosis.

When i heard i was hiv positive in 2011 i felt like i was very alone on this planet even though my personal physician was present in the room.
Then the crying and the panic set in and that took me quite some time to get over and make it work for me.
The one thing i can say is don't let hiv take over your life, be in control of it.
Also telling your partner was very courageous of you to do and even though your partner was shocked in the beginning it sounds like that will work out fine.
Just a tip, take your time with telling other people that are close to you.....take time to heal yourself first.

Also when going to your appointment next month take the time to ask questions and make sure you are involved with the choices being made. That gives you the feeling of control. Another tip from me would be to try and take someone with you, two people hear more than one especially when you are still dealing with the news of hiv diagnosis.

When you have questions that can't wait please feel free to message us here on the forum, there will always be someone who has an answer to give.
Good luck and i do wish you Happy Holidays, the first of many more to follow

[Aaron55]

Thank you Quint for this note. I appreciate your tips and will keep these in mind. I’m feeling a little less helpless and hopeless each day due to the strength of my partner, and the experiences I read about on this site.
I plan to ask questions, but don’t know the questions to ask just yet.
Still scared, still sick to my stomach with little to no appetite, but finding comfort little by little.
Again; thank you, and happy, heathy holidays to you.

Aaron55

[Jim Allen]

Hiya,

Sorry to hear about the diagnosis and the low CD4 count.

Was the diagnosis based only on an HIV antibody result, and are you getting follow-up labs? Do you know what the viral load is and the CD4%?

Regarding the CD4 count of 160, as its below 200, you may want to start with antibiotics (Trimethoprim/sulfamethoxazole) to prevent certain opportunistic infections - Example: https://www.poz.com/basics/hiv-basics/pneumocystis-pneumonia-pcp This would be my priority if I were you and I would not be waiting for an appointment in Jan.

Thinking I asked all the right questions, and feeling a sense of trust from my encounter, I did not use protection

It happened, don't beat yourself up over it. Millions of people do this and are fine, but it's a risk, and you are unlucky.

That said, I must mention that there are no correct questions to ask, as the answers are mostly meaningless. Even if someone tested today, it means nothing due to the window period. That is a hard way to learn this lesson, and I only bring it up as others will read this thread, and they should, instead of asking questions, presume the other person is living with untreated STIs/HIV and reduce their risks. 

Side effects of medication?

Side effects can happen with any medication. No point worrying about it and you should not expect anything that isn't manageable or doesn't settle down, and if it is an issue, that's OK, as you will have plenty of combinations to try until you find something that works well for you.

The doctor's recommended treatment options will also depend on things like your preexisting medical needs, the viral load to start with and if the HIV you have has any resistance to treatments.

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
https://www.poz.com/basics/hiv-basics/hiv-medications

Will this be my last Christmas?

It's just HIV so it will not be your last Christmas unless you have other issues, an accident or don't start HIV treatment and manage this.

What should I expect from my friends and family should I choose to share this news?

It's a manageable health condition, so I am not sure why you would want to share this information. Plenty of people have manageable conditions and don't tell people as they don't need to know.

If you do tell then you can expect questions, so be prepared for that. Some people might not be very understanding and others might share this "news" with other people. Once you tell people it's out there. My situation is everyone knows my HIV status, it doesn't bother me but the truth is everyone knowing this about me has been problematic at times.

Anyhow, take it easy.

[Aaron55]

Thank you for all these details, I do appreciate everything. The original diagnosis was at a clinic, and I was then referred to a ID Doctor who did lab work but I haven’t reviewed it with him yet (Jan. 4). I checked my patient portal but I don’t understand the results. I have not spoke to my PC physician yet but plan to after the holiday, and hopefully he can translate the results before Jan. And get me started on something. In the mean time I’m playing it safe, not putting myself in crowds and wearing a mask .

Thank you again,
Aaron 55

[Aaron55]

I have my follow up in two days to my initial appointment with the ID Doctor and I’m not sure what questions to ask. I want to be prepared, and diligent about my treatment so I’m putting a list together. Any suggestions? Thanks

[Quint1976]

Hi Aaron,

first of all Happy New Year and may 2023 be a good one for you and your loved ones.

Regarding your request for suggestions i would like to say this....
Its really hard to answer that one, having a conversation with your doctor is very personal because well its about you.
Questions like how is my health with hiv or what side-effects can i expect are some of the examples i can think off but there are WAY more.....
Don't get me wrong here, being prepared is always a good thing but maybe in this appointment you should just talk to your doctor and from his/her answers make up your mind on what question to ask.

Don't be afraid to speak up and talk about the things you want to talk about or ask the questions you want to ask.

Good luck and let us know how it went....

[Jim Allen]

Since you are new to this, I would be getting the most recent results, including the viral load and finding out with the doctor what suitable treatment options are available and how soon you can start. After that, I would check with the doctor that vaccinations are up to date.

That's about it; not sure anything else would be relevant but write down whatever you feel you need to ask and ask them.

[Aaron55]

Thank you for your guidance, it is appreciated and comforting as I begin this journey.

[Aaron55]

Just back from the ID Doctor. Cd4 165 , Viral load 21,000.
Starting meds today Bictarvy~1 daily, Bactrim ~1 daily-not permanent.
I’m not sure how good or bad these numbers are but was told the VL is not too high , and cd4 should be above 200.
Next appointment is 6 weeks. My journey begins.
Thank you for being here as I personally don’t know anyone with HIV, reading through the posts and feedback is comforting.

[Jim Allen]

Good update, and glad the meeting with the doctor went well.

The CD4 is low, Late-stage HIV (AIDS), although where I am based, you would need below 200 and an OI to be AIDS last time I cared to check.

Anyhow, that doesn't matter as the Bactrim is to help prevent certain OI (Opportunistic infections) and thankfully, it isn't for the long term. I can't say I enjoyed Bactrim much, but it's necessary to prevent far worse.

Also, now that you have started treatment, the viral load should drop and finally be suppressed so HIV can't do unchallenged damage, and your immune system can start to "heal" or "recover" from trying to deal with HIV.

Thank you for being here as I personally don’t know anyone with HIV, reading through the posts and feedback is comforting.

If you like you should join our next (video call) forum meeting.  https://forums.poz.com/index.php?board=12.0

 

[kentfrat1783]

Just back from the ID Doctor. Cd4 165 , Viral load 21,000.

Your CD4 may have started out low but I'm sure once you're on your meds and get to undetectable they will climb up.

I would have loved to start out at 165 but I started at 2 CD4's.  I too was on Bactrium but for me that lasted nearly 3+ years and was so glad to get off it.  The medications do help but as we talked about today if you have reactions that are causing you to not live your life as you want talk with your doctor to look at other options.

The biggest thing that I learned, and Jim helped with, is that this is a manageable condition and we will live long and happy lives. 

[Aaron55]

Thanks for the comment Kent…while I’m not having any side effects yet I am hoping to be off the Bactrium as soon as feasible. Not a big pill person but I’ll do what’s necessary to get my numbers up and keep them there. It was a great support meeting so thank you guys for making me comfortable.

[leatherman]

I’ll do what’s necessary to get my numbers up and keep them there

I believe that it often helps to look at something from a different angle to make it more manageable.

Really, all you want to do at this point it take your daily HIV med to keep your viral load DOWN. that's the different angle

HIV meds don't do anything to directly effects cd4s or anything else in your body. The only thing HIV meds do is block/suppress HIV by interrupting (at multiple levels) it's ability to reproduce. So as the amount of virus dies out (measured by your viral load going down), your body is able to recover over time building back up a supply of cd4s.

Now the cd4 count is a count of how many you have; but there's no way to measure how strong/effective those cd4s are at doing their job. Most times, even a handful of cd4s can fight off a lot of stuff. It's just when the count is below 200 that an opportunistic infection might happen. The general thought is that the more cd4s you have the more your immune system will fight off diseases. But if your cd4s are good fighters, maybe all you need is 250.  I lived with that low of a count of over 15 yrs without being sick. I'm up to 550 now and while I don't feel twice as healthy (dang it!  ) I'm still not sick and I am as healthy as I've been the last decade.

The range for a "normal" cd4 count is 400 to 1200; but besides the regular stuff (stop smoking, reduce drinking, exercise, get more sleep, lose stress, etc), there's nothing we can do to improve our cd4 count. It's all based on how sick you were/are, how effective your immune system is/was, and your genetics. You could not be sick with only 300 or you could be sick at 900. it's all about what you're sick with and how your genetics have combined to make your immune system to work.

So, take your meds, keep you Viral Load Down, and talk to a doctor about any other low/abnormal blood counts you might have because everything isn't always HIV-related.

It was a great support meeting so thank you guys for making me comfortable.

we've been doing these for a number of months and I really enjoyed this one with so many people. Some of the meetings we just bs'ed about our lives. some we've talked about advocacy work some of us have done. sometimes we've joked around about the crazy that is the 'am i infected" forum; and sometimes we've even talked HIV, treatment, and access to services.

I hope you can be in the meet again next time. Make a list if you have questions; we've probably got answers

[Aaron55]

Thank you for this info, much appreciated. Hope to see you all next month!

[Aaron55]

Six week check in with ID Doctor and things look good so far according to him.
2/15 Cd4 ct. 290 from 165 1/4/23
2/15 VL 121 from 21,000
Next appointment 3 months away and outlook is promising .
Biktarvy seems to be doing its job, and hopefully be off of bactrum (sp?)after. My appointment in May. Fingers crossed !

[Jim Allen]

Excellent update and results 

How are you feeling?

[Aaron55]

Thanks Jim,

Feeling good, gained a few pounds but I blame my diet for that. I haven’t really had symptoms or side effects that I’m aware of . Guess I’m lucky so far.  Mentally getting there…

[Jim Allen]

Excellent.

Well, weight gain can be a combination of things, so HIV itself makes us fat, it seems unless you leave it too long, starting treatment as the body heals and also the meds can add some weight, not to mention as a side effect of not drying ageing at some stage. I mean, I look more and more like Homer Simpson every passing day, nothing to do with HIV or my meds

Anyhow do keep an eye on it, if it's too much you gain then you might want to talk to the HIV specialist again.

Mentally getting there…

Good, and it can take time to get there, but it sounds like you are. Keep in mind your not alone so if you ever do need to chat, talk or vent you know were to find us.

[leatherman]

Guess I’m lucky so far.

not taking away from what you're feeling but I wish more people at the beginning of their treatment were able to understand that not having side effects doesn't make you lucky...it simply makes you average.

Don't believe me? check out any package insert on any medication. No medications go to mass market unless the amount of negative side effects is quite small. Nearly every medication it seems has anywhere from 2-10% of patients who report mild side effects (usually which dissipate in the first few months of treatment) and usually 1-5% report long term negative effects.

The actual statistical outcome of taking medications is to not have side effects. Even people right at death's door from AIDS have been known to recover with few side effects once on the right medications. That makes 93-98% of us "lucky". Those are great odds!

Mentally getting there…

and this is why I wish more people understood how well treatment works. I think if they knew how HIV when properly treated with daily medications has become a manageable chronic disease they could move along faster after diagnosis and the start of treatment.

Starting treatment for HIV is a journey. Sometimes numbers don't go in a straight line even though they continue to improve, but it takes time. Sometimes there are a few side effects, but once again a little bit of time sorts that out too.

This is 2023 treatment and not 1995 early treatments. Back in those days, most everyone was dying and the side effects of those first meds were horrible - even if they did keep you alive. These days, there are several choices for first and second line treatment with meds that are more effective, forgiving for any mild non-adherence, and with fewer side effects.

nothing to do with HIV or my meds

all them pints. LOL

gained a few pounds but I blame my diet for that

depression and stress (well even relief) can all lead to some over eating. If you're finding the weight a problem, exercise more. Your 70 year old self will thank you.

[Jim Allen]

all them pints. LOL