I just tested positive

[Charles.M]

Hi I am a heterosexual married man and recently tested positive. My vl was 63,000 and my CD 4 was 70. I am of course quite scared and confused. The best thing is my wife tested negative. I have appt with doc on 6/6. I feel fine this was discovered during routine physical bloodwork. I honestly have no idea how I got this. My initial phone conversation with doc said they could get me down to undetectable gaurenteed 100%. I am sure they are hoping for that as am I. I will likely never have sex again and that’s ok. My main concern is my CD4 count? Can it ever get back to non AIDS levels?

[leatherman]

I honestly have no idea how I got this.

welp, the "how" was either unprotected sex or sharing needles

My initial phone conversation with doc said they could get me down to undetectable gaurenteed 100%. I am sure they are hoping for that as am I.

Meds today are vastly superior to meds in the 90s. Considering you aren't hospitalized with anything, it's quite true that you should get to undetectable. It could take a while (months to a year); but very few people are unable to reach UD.

My main concern is my CD4 count? Can it ever get back to non AIDS levels?

As the meds stop HIV from replicating, the virus dies off. That allows your cd4s to recover. There's really nothing you can do to get higher cd4s than all the general good health stuff (eat well, rest, exercise, stop smoking); but the biggest thing is to stay adherent to daily HIV meds!

I will likely never have sex again and that’s ok.

Once you've been undetectable for 6 months you can no longer transmit HIV (undetectable = untransmittable aka U=U). Don't rule out sex, that's just too sad. While you may feel uneasy about the issue now, don't just rule it out for the future. HIV is not a reason for celibacy; but using condoms and/or being undetectable is important.

If you have any questions don't hesitate to ask here. There are plenty of people who can chime in on living with HIV

[Charles.M]

I am ruling out sex, as I am non functional and have been for a few years. I do not do any drugs nor drink. So cause not needles and cause not sex at least from my wife. I have been with no one since her. I did have several surgeries but no blood products were given to me that I know of.

[Charles.M]

Again my Wife is negative and I thank the lord and God for that more than you can imagine!

[Jim Allen]

Hiya.

Sorry to hear about the diagnosis. Glad to hear you have access to healthcare and treatment.

I honestly have no idea how I got this

I am ruling out sex, as I am non functional and have been for a few years. I do not do any drugs nor drink. So cause not needles and cause not sex at least from my wife. I have been with no one since her. I did have several surgeries but no blood products were given to me that I know of.

You might never know what specific risk event you experienced resulted in you acquiring HIV. Even if you did drink, that certainly never gave anyone HIV and I'm not even going to get into the rest of it.

Still, one thing is for sure, HIV is extremely limited in how it's transmitted, and you had a known risk event that simultaneously met all the biological & environmental conditions needed to acquire HIV.

welp, the "how" was either unprotected sex or sharing needles

True.

That said OP, nobody here will ask, care, or play the guessing game about how you specifically acquired it, as it's irrelevant. You probably know, prehaps you don't but we don't do good AIDS vs bad AIDS. You are here now, and we will support you and its and time to focus on treatment and moving on. 

My initial phone conversation with doc said they could get me down to undetectable gaurenteed 100%.

My vl was 63,000 and my CD 4 was 70.

Sometimes it takes months; for others, it can take a year.

However, and far more important at this stage is talking to your doctor about antibiotics, commonly Bactrim (Sulfamethoxazole and trimethoprim), to prevent certain OIs considering your CD4 count is low. https://www.poz.com/basics/hiv-basics/pneumocystis-pneumonia-pcp

My main concern is my CD4 count? Can it ever get back to non AIDS levels?

Sure. Look, it's a touch of AIDS, well, it's best avoided, but you are here now, can't change that, no point in stressing about it. If you start antibiotics to help prevent OIs and HIV treatment to suppress the viral load, you should soon make progress in the right direction.

See, once the viral load starts to be suppressed, your immune system can start to "heal" or "recover" for lack of a better phrase, and the CD4 counts should go up, although once stable over 200 and the viral load has been suppressed, the CD4 count becomes less relevant.

[Charles.M]

Thank you, for the response. I am very hopeful for the future. What does scare me and I am sure most people is the cost of the meds. I currently have health insurance,  it sure what they will cover but it is a bit overwhelming.

[Jim Allen]

Sorry about editing my post a few times. It was mostly a spelling issue, but I am travelling, so typing on the phone but have the wrong glasses with me

Look, plenty of us have been at the stage you are at and worse with even lower CD4 counts, including myself. It's a lot to digest right now, but you are not alone, and we are here to support you. 

Thank you, for the response. I am very hopeful for the future. What does scare me and I am sure most people is the cost of the meds. I currently have health insurance,  it sure what they will cover but it is a bit overwhelming.

See that's one thing I don't know or have to worry about as I am in Ireland and HIV treatment & care is free of charge for people living with HIV.

Presuming you are based in the US?

[Charles.M]

Yes I am in the US, I am also 61 years old, which from what I am seeing I am fairly old to be just diagnosed. Can I ask what you CD4 and Vl numbers are?

[Jim Allen]

Yes I am in the US, I am also 61 years old, which from what I am seeing I am fairly old to be just diagnosed. Can I ask what you CD4 and Vl numbers are?

I had to check my vampire thread https://forums.poz.com/index.php?topic=66320.msg as whenever I visit the clinic, I post it there, although it's not my thread anymore, and many forum members post their lab results there.

Viral load - Fully suppressed.
Lipid profile - All within normal range
CD4  - 728
All other labs - Normal range

So 728 was my last CD4 count, and I would offer to share them, but mine are lazy and feckless  My lowest count ever was 28.

I am sure some US forum members will chime in regarding treatment costs in the US.

[leatherman]

What does scare me and I am sure most people is the cost of the meds. I currently have health insurance,  it sure what they will cover but it is a bit overwhelming.

Check at your state's health department website for "HIV", "ADAP" or "Ryan White". The Ryan White Care program is a federal program administered through each state that helps those that meet financial requirements. In most states, it can help cover the costs of insurance premiums and additional costs. Drug Manufacturers also have patient assistance programs that can help if you don't qualify for Ryan White assistance. Here's a link to the POZ.com info about all this that you may find helpful. https://www.poz.com/basics/hiv-basics/drug-assistance-programs

[leatherman]

Hey! Another old guy (61) like me!
At one time I was down to cd4 5 and vl 4million....but that was 30 years ago. I lived pretty healthy for decades with less than 300cd4s (cause mine are not lazy and work their asses off. LOL) but, in just the last 3 years, suddenly had a climb and got to 672.

[Charles.M]

Thank you all for posting, I do feel better about my prognosis. I will definitely have to look into those financial assistance programs. I have my first appoint in 5 days, and I continue to talk to God.

[leatherman]

I don't know what kind of doctor you'll be speaking with (meaning like at a hospital, a health care clinic, or a single provider); but if they don't bring up pharmaceutical patient assistance or ADAP/Ryan White, then ask about those things. Doctors who treat HIV are almost always hooked into the Ryan White program (because here in the USA, about 60% of people living with HIV get some sort of assistance through that program) and/or know some about helping their patients get assistance with obtaining meds.

[Charles.M]

Having a slight bout with thrush.  Good news is the treatment (swish and swallow) is working very! Also started on the Bactrim. Maybe I have just accepted my situation but I am feeling much better. I had a slight ear sinus infection which seems to have magically disappeared.

[Tonny2]

        ojo.      Hello there!… i’m glad to read that you are starting to accept your condition, this is a very good step forward for a rapid recovery, and start learning to live with HIV… the formula to defeat HIV is discipline in taking your medication as prescribed and good attitude, you can’t change the past, but you can have a better present… please keep us posted…hugs

[Charles.M]

Good morning all, seeing doctor tommorow for first time very worried. I keep
losing weight. Point about 2 to 3 lbs a week. I eat and eat but still loose. Can I expect my weight to stabilize after treatment begins. Not gonna lie I am scared.

[Jim Allen]

Hiya.

Since it's your first appointment, write down any questions/concerns you have and bring them with you so you don't forget to ask something you wanted to ask.

The thing with starting treatment is many gain weight, it's a combination of things, those who were sick or had AIDS it's often a return to health weight gain, HIV itself and in addition the meds can add a bit of weight before it settles. (I'll add reference later)

[Charles.M]

Thanks I hope I can at least stop losing weight. I started losing weight about 6months ago (pre diagnosed). I was doing a lot of work around the house, after retiring from a desk job. When the weight loss started I was feeling good about it, not now! I went from 210 to now 189 and still dropping.

[Tonny2]

            ojo.             Hi there!

Before I got diagnosed with PCP, I lost a lot of weight, so I’ll talk to his doctor tomorrow about it. Please make a list of all the questions you may have so you can ask the doctor… good luck tomorrow with your doctor and please keep us posted.

[Charles.M]

Saw the Dr today, put me on Biktarvy, also diflucan, the journey begins! First blood test for a load in 4 weeks! She was really surprised how healthy I am or appear to be anyway!

[Charles.M]

Well I’m on the meds now, worried about IRIS and OIs. So far no side effects from anything. Had a rash on both forearms, but looked more like spotted pigmentation. It has cleared a bit and the doctor did not seem to give it much thought? For some reason weight has started to stabilize, maybe I’m eating more with thrush clearing up, also maybe I’m not as stressed as I was and have accepted that which I cannot change. The Doctor said in 4 weeks I should be undetectable, as far as CD4 she said we can only hope for the best but need to wait and see 6 months down the road.

On a side note do any of you Gus communicate directly with each other? I would so much like to do that. Hopefully by someone in US, but am open to anyone.

[Jim Allen]

worried about IRIS and OIs

Don't worry about it.

For some reason weight has started to stabilize, maybe I’m eating more with thrush clearing up, also maybe I’m not as stressed as I was and have accepted that which I cannot change.

You are getting treatment for the thrush right?

The Doctor said in 4 weeks I should be undetectable, as far as CD4 she said we can only hope for the best but need to wait and see 6 months down the road.

As long as the vial load keeps going down, don't stress about it if it's not undetectable in the lab work within 4 weeks. Some people get there really quickly but most take a few months at least.

On a side note do any of you Gus communicate directly with each other? I would so much like to do that. Hopefully by someone in US, but am open to anyone.

Plenty of us do. We also have a monthly video call meeting, next one is this Saturday if you like to attend.
https://forums.poz.com/index.php?topic=76748.0

[leatherman]

Well I’m on the meds now, worried about IRIS and OIs. So far no side effects from anything. Had a rash on both forearms, but looked more like spotted pigmentation. It has cleared a bit and the doctor did not seem to give it much thought? For some reason weight has started to stabilize, maybe I’m eating more with thrush clearing up, also maybe I’m not as stressed as I was and have accepted that which I cannot change.

Make sure you try to give everything a more positive outlook. It'll help your head and your heart. Now that you've started meds, you're on the mend. Of course, you might have to deal with your body getting used to the meds working to stop HIV while you body gets "un-used' to the HIV running around messing up your immune system; but that's actual a good thing (even if it doesn't always seem like it is. LOL Your weight is improving; the thrush is clearing up. A rash came and went. All that's really good. Getting rid of some of the initial stress and worry sure helps too.

The Doctor said in 4 weeks I should be undetectable, as far as CD4 she said we can only hope for the best but need to wait and see 6 months down the road.

Your doctor is certainly ambitious. Everybody's body is different and it could take 4 weeks or it could take months. But listen: you're on meds now and that's really all that matter. The viral load will drop and your cd4s will recover. It's simply nothing more than a guessing game on when that will happen....but it will happen.

Plenty of us do. We also have a monthly video call meeting, next one is this Saturday if you like to attend.
https://forums.poz.com/index.php?topic=76748.0

Already?!? Boy does time fly!

Drop in if you have a chance, Charles. It's a informal chat, and it'd be nice to see ya!

[Charles.M]

Have second appt with Dr in 4 days and that will mark 2 weeks on Biktarvy and Diflucan, 3 weeks on Bactrim and Navistatin. I still have a slight tickle in the back of my throat but minor. My ears dont feel plugged up anymore. I and with initial CD4 test showing 72 I am abit scared. Since its to early for another blood test I assume its just to access me mentally and ask if I am having any adverse effects from the drugs etc.
Sorry for the rant just like anyone with this disease feeling abit down, hopping for the best though.

Thank God this forum exists as I really have no other outlet, except my wife who has been a true saint!

[leatherman]

Since its to early for another blood test I assume its just to access me mentally and ask if I am having any adverse effects from the drugs etc.

More than likely the visit will include more bloodwork. If the doctor just wanted to know how you felt, they could have done that through the patient portal, email, or phone. A lot more blood work might have to be done when a person is first diagnosed and started on treatment. The doctor (and the patient) would be looking to see how the basic blood work (CBC) was going. Sodium too high? Iron too low? kidney functions good? All those sorts of things can show problems (or no problems) during a high VL/low CD4 situation; also about how the meds are doing with you. Are the meds having any sort of negative internal side effects? If your viral load is heading down. Of course, they'll check cd4s but it'll take your viral load going down to see much of an improvement there....especially this soon.

Mentally? LOL You know we're in America where healthcare is ruled by requirements and there's no funding for mental/emotional health care, right? LOL Hopefully the doctor will ask how you're dealing with adherence and maybe how you're coping with your diagnosis and stress.

Part of Ryan White requirements (I quote these a lot because most health care providers that deal with HIV care receive federal funds from RW. These funds come with "strings attached" or measurements* to ensure the government is getting the best bang for our buck), one of those "strings" is a mental health assessment/screening. Similar to the dental health screening, it's usually a short questionnaire about how you are feeling. It's really just a checklist. If your healthcare provider sees that you seem to be having issues based on your answers, they could talk to you about these issues or refer you to another provider.



*Ryan White Care Act Quality Measurements
Just to fill your head will knowledge LOL..... The Ryan White Program has a lot of requirements. These measured and reviewed to improve health care providers -- but since these are best practices towards improving patients health, these requirements are something we should all be looking out for.

HIV Viral Suppression 
is the patient UD
Prescription of HIV Antiretroviral Therapy
has the patient been prescribed med?
HIV Medical Visit Frequency
how often has the patient been seen?
Gap in HIV Medical Visits
what the gap between medical appointments?
PCP Prophylaxis
if the cd4s <200 has the patient been prescribed bactrim
Annual Retention in Care
has the patient remained in care all years

has the patient had
Influenza Immunization
Hepatitis B Vaccination
Pneumococcal Vaccination

has the patient been checked for:
Lipid Screening
Tuberculosis Screening
Chlamydia Screening
Gonorrhea Screening
Hepatitis B Screening
Hepatitis C Screening
Syphilis Screening

HIV Risk Counseling
talk to the patient about HIV transmission risks

Preventive Care and Screening: Screening for Clinical Depression and Follow-Up Plan
Preventive Care and Screening: Tobacco Use: Screening and Cessation Intervention
Substance Abuse Screening

[Charles.M]

Went to ID today for second visit, no blood work just asked how all was going and wanted to know if I was having any medication issues (which I am not). She brought up mental health issues we both me and my wife as far as dealing with this. One of the biggest obstacles for me is my wife wants to discuss it with her family. I prefer to keep it private, not for fear of losing her but for fear of being ostracized. She says she only wants to tell her sisters, but they could never keep it private. Pretty sure everyone would know rather quickly. There is still way to much stigma with this disease. I know that anyone in my inner circle would shun me and I would be treated like a lepper, pretty much unwelcome anywhere. For now my wife is committed to me and I hope that lasts as I know that this has to be incredibly hard on her.

[Jim Allen]

She says she only wants to tell her sisters, but they could never keep it private. Pretty sure everyone would know rather quickly.

Regarding sharing in general, sharing your status with anyone else is your choice, of course, now like it or not once you have told someone, odds are will share that private medical information with others, there is not much you can do to prevent that.

It's a manageable medical condition, just like so many health conditions nowadays that many people keep private or on a need-to-know basis.

Regarding the sisters, unless there is a problem and your wife's sisters can support you somehow, there is no need for them to know. Odds are between them they at least have some manageable medical conditions they haven't shared with you, like common enough issues to the population, herpes, diabetes or recurring fungus to pick on some of the common ones and why would they tell you?

Anyhow, hope you can talk to your wife and explain your concerns and ask prehaps why she feels the need to advertise your personal medical information to others and what, if anything, she expects to get out of it.

 

[leatherman]

Odds are between them they at least have some manageable medical conditions they haven't shared with you, like common enough issues to the population, herpes, diabetes or recurring fungus to pick on some of the common ones and why would they tell you?

Anyhow, hope you can talk to your wife and explain your concerns and ask prehaps why she feels the need to advertise your personal medical information to others and what, if anything, she expects to get out of it.

well, Charles, I could see that maybe your wife is looking for her own emotional support from her sisters. Of course, at that point it won't take long for your personal health situation to be known by a lot of people.

But I have a different thought about this situation. Exactly why does your wife think she needs support? It's not like you have cancer. It's not like you're dying. These days, as long as a person is tested and treated in time, it's not even like you have a some life-threatening illness. Matter of fact, most people living with HIV are in better health (because more doctor appts and tests means problems are found faster and taken care of before they cause severe issues) and we live just as long as people without HIV.

If your wife is seeking out support from her sisters about your health situation is it because she's afraid and worried about how your health issue might adversely affect you and/or her? If so, she's just misinformed about living with HIV with treatment and is obviously worrying about things she shouldn't be worried about.

I know that anyone in my inner circle would shun me and I would be treated like a lepper, pretty much unwelcome anywhere.

While I'd like to say you'll probably be surprised that many people are accepting, your opinion there is the exact reason for you and your wife to NOT tell anyone. Of maybe just not yet. Having been recently diagnosed and started treatment, you and your wife really need to just sit on this information for while until y'all have wrapped your heads around the situation more. Once y'all know more about living with HIV, then you'll be able to explain the situation more when disclosing and know who and when to disclose.