1 Month since my diagnosis & 3 weeks into treatment

[ThinkingPoz]

Hello everyone,

I'm obviously new here and like many, I am here to share experiences and to learn from others. 

On September 26 of this year I had an appointment with my HMO's Infectious Diseases department.  I had just been notified of the appointment the night before at 9:30 PM by email from my primary care giver.  I emailed my MD for further details however she was not able to provide any further information regarding my routine blood work.  I was simply told to be sure to make my appointment with ID.

That morning I waited in the exam room with my stomach in knots.  The MD came in and greeted as he would any patient.  The doctor started asking me questions about my sexual activities and before my HIV test results were released to me he ask, "So is your partner positive too?".  As you can imagine I was in complete shock.  I asked the doctor to back up and said, "i was never given the results, are you saying I tested positive for HIV?".  The doctor nodded his head and confirmed my worst fears at that particular moment in time.  That was day one.  One week later I started treatment which includes Truvada and Tivicay.  I also take KPAX Immune boost supplement packets twice a day.

Since my diagnosis it has been a struggle with sanity.  I've come to realize there will always be questions which will never have answers.  Thankfully my partner of almost 10 years tested negative.  According to my specialist and what I've read, I may have been living with HIV for a decade and didn't know it.  My CD4's were at 86 and VL was 12,000.  I am determined to make this experience into a positive new chapter of my life.  I know I am fortunate we live in the time which medicine has advanced far enough to keep HIV manageable.  What I've been struggling with is the how, who, how long, and of course, why me.

It has only been a month since diagnosis but I feel quite optimistic.  I am learning to let go of the questions which can't be answered.  I have been much more conscious of my health since the diagnosis.  When I find myself feeling low, I count my blessings for the things I am grateful for on a daily basis.  I've disclosed my status to only a couple of close friends and they have been so very supportive.  I wish I could say the same for my partner.  He battles anxiety and panic disorder so I've been keeping my emotions to myself so as not to trigger his anxiety.  Right now we are a really messed up couple but we will get through this I know it.  Sometimes I feel I've let so many people down because of my HIV status.  My family immigrated to the US and now I am a 38 year old Vietnamese American gay man. 

My purpose for posting my recent experience is to hear from others who can offer guidance and optimism.  In my long month of being diagnosed I have learned how crucial it is to have a support system to get yo through the initial shock.  Close friends and friends on forums such as this are a necessity on the path to healing.

Slowly but surely I am coming to terms with the fact that I did not ask for this illness and no one is to blame.  The only place to go is forward and continue to live life as best as we can.

Sorry for the rambling, I just hope someone who is feeling down from being newly diagnosed will find hope in these words.

Ki of California

[mecch]

Hi Ki welcome to the forum. 
Sorry you had to join us 

Im sorry to hear about troubles in the couple.  Wondering if your bf has or has had in the past, treatment and therapy for the anxious disorders. Maybe if you guys could use some couples therapy even if just for a few crisis sessions.

I think your GP was cowardly or very lax not to tell you herself, the diagnosis.

If you haven't had an HIV test in a decade, yes, it will remain a mystery when you got it.  Did you ever have HIV tests?

Sounds like you are handling all this quite practically so I hope you feel more normal soon enough.

[ThinkingPoz]

Hi Ki welcome to the forum. 
Sorry you had to join us 

Im sorry to hear about troubles in the couple.  Wondering if your bf has or has had in the past, treatment and therapy for the anxious disorders. Maybe if you guys could use some couples therapy even if just for a few crisis sessions.

I think your GP was cowardly or very lax not to tell you herself, the diagnosis.

If you haven't had an HIV test in a decade, yes, it will remain a mystery when you got it.  Did you ever have HIV tests?

Sounds like you are handling all this quite practically so I hope you feel more normal soon enough.

Thank you mecch!

The bf has in the past received therapy for his anxiety, even before we were a couple.  He has been coping with his anxiety and panic disorder for years with the help of antidepressants (which doesn't help our sex life).  My recent diagnosis brought it all back, at least that is how I feel.  We did have an honest talk last night and I was very clear expressing how I felt alone during a time when I needed his support more than anything.  He apologized for not being able to give me the support I need but he is willing to seek professional therapy and work towards healing himself.  I was able to express how hard it has been for me to keep smiling and remain optimistic solely for his benefit when my own diagnosis was placed on the back burner.  I thank the Universe my partner tested negative but I don't think he understands exactly what I have been going through for the last month.  He told me nothing has changed and I want to believe him, but at the same time, everything has changed.

I agree my GP was very cowardly to not tell me the results herself.  I had simply asked for a full panel of routine blood work and decided to be tested for the first time in my 38 years for HIV.  This was my first test ever.  Prior to my current relationship of 10 years I was in another LTR for 6-10 years.  I have an idea how I contracted HIV but knowing the details won't change my current status.  I'm still struggling with learning not to place blame on myself for my diagnosis, some days are better than others of course.

I am doing my best to be practical and remain on this new path of better health now that I am HIV+.  Since being on treatment, this last week I have noticed my energy level has increased which gives me hope.  I stopped smoking cigarettes a week ago and my cravings are minimal.  I am grateful the side effects from my treatment have been minimal and I hope to be undetectable soon.  I have also started to eliminate my antidepressant Celexa from my regimen but I am decreasing my dosage by half a week at a time.  My plan is to reduce my dependency on any medications which are not medically necessary so my body can truly heal.

I have to believe everything happens for a reason and the only way to combat depression is with optimism and positive reinforcement.  Since my diagnosis I have made at least one  great friend through the internet.  If I had not been diagnosed I would never have made these connections with other people who are struggling with the same situation.  There is always a silver lining, sometimes you just have to look closer.

[mecch]

My ID tells me the number one thing HIV+ smokers can do is quit smoking so bravo.
On the other hand, why do you need to wean off the anti-depressant and who recommends getting off it? Is that prescribed by a therapist. If so, does the therapist think now is the time to quit the anti-depressant?

You shouldn't worry about medicine that is prescribed by a doctor and checked for interaction with the HAART combo. Very often recently diagnosed people go on a health kick because they are so terribly anxious about having HIV. Thats great if it leads to quitting smoking, or to eating whole foods, or to exercise. However its the HAART that is going to cut down the viral load and NOTHING ELSE.  One does not need to radically change ones lifestyle because of an HIV diagnosis.  All in due time.

All people benefit from "healthy living" but also in a time of stress like this one do not bite off more than you can chew... 

In other words if the anti-depressant is doing good work stay on it.  And being on or off anti-depressant has absolutely nothing to do with a body "truly healing" from HIV infection.

Do not anthropomorphise the HIV virus and do realise you will always have it and in that case you will never be "truly healed" you will however be healthy enough and feel healthy.

If you want to combat depression through "optimism" fine and dandy but maybe have a therapist help you there.

[Miss Philicia]

Several thoughts:

1) yes, I find it negligent that your GP didn't inform you of your diagnosis before referring you to an infectious disease doctor. That's very odd. If he's still going to be involved in your medical care going forward I'd want to clear the air on that one.

2) Your partners anxiety issues and his sole focus on that obviously is a drain on your ability to address your own issues with a new diagnosis. As a partner he needs to be cognizant of balancing both his own needs and yours, which probably means returning to therapy for his own anxiety issues.

3) taking an anti-depressant for what is really situational depression from your diagnosis (as opposed to clinical depression) is only meant as a short-term band-aid. I'd not be concerned with looking at it as something necessitating a quick "plan... to reduce my dependency on any medications which are not medically necessary so my body can truly heal". Sorry, this is just something you are making up in your head and is not based on medical science. It's a good long term goal that most psychiatrists would agree with, but they would see it as something that should be done in conjunction with cognitive behavioral therapy sessions which would teach you how to navigate depression issues on your own -- THEN the patient would be weened off the anti-depressant. What you are doing is self-diagnosing yourself and adjusting your medication on your own without discussing this with your prescribing physician.

Ultimately it's your body and nobody is going to stand over you and force feed pills down your throat (obviously) but these are not great habits to start, speaking from over two decades of dealing with HIV and taking medication. I advise you to consider these courses of action in a more prudent fashion.

[ThinkingPoz]

Thank you Miss Philicia and mecch for your solid advice.  Just last night my partner and I had a good talk and we both agree to seek professional help.  Things that needed to be said were voiced and heard.  I am confident we will bounce back from this.

Regarding my antidepressants, I originally started taking them to deal with high stress from work.  About two months prior to my HIV diagnosis I was already speaking to my GP about coming off the antidepressants.  We agreed I could start halving my dosage by the week.  I have been taking half my normal dosage for two weeks now but after reading these replies, I plan to continue taking the half dosage and not stop completely, at least not yet.  Miss Philiicia, you hit the nail on the head when you told me I was self diagnosing.  Working in the healthcare industry I really should know better than to self diagnose.  I will be reaching out to my care providers to discuss further the therapies available to me before making any drastic decisions.

Truly from the bottom of my heart, thank you for the straight forward no nonsense advice.  Please be patient with me, some days are easier than others.  I just want to make the right decisions and move forward. 

[sidd34]

Dear Ki,

I am sorry to hear you had to join this forum, but surely you will get alot of support and guidelines here.
I was diagnosed on 10Th of Sept 2014 and started my treatment on 16Th!! I am single so wont be able to give you any advise on how to deal with your partner BUT I will surely say, being OPTIMISTIC has really helped me.
You are right, questions such as when, how, where can trigger anxiety and uncertainty in us, but what helped me is to come to terms with the fact that we have it and NOTHING is going to change that. So no point looking back and worrying about it. Keep reminding yourself that you have to move forward and the fact that you now know, will help you improve your life

To give you my example, my CD4 was 660 and VL 148,000 on 10Th Sept. I had my first tests after a month and my CD4 has gone up by 1540 and VL is down to 1205... so YES being optimistic and positive is all what we need with regular medication of course. Remember we are not dying with HIV

You could suggest your partner to even join this forum and he might be able to talk to Neg partners and share his experience. It could certainly help?

Cheers, Sidd

[ThinkingPoz]

Dear Ki,

I am sorry to hear you had to join this forum, but surely you will get alot of support and guidelines here.
I was diagnosed on 10Th of Sept 2014 and started my treatment on 16Th!! I am single so wont be able to give you any advise on how to deal with your partner BUT I will surely say, being OPTIMISTIC has really helped me.
You are right, questions such as when, how, where can trigger anxiety and uncertainty in us, but what helped me is to come to terms with the fact that we have it and NOTHING is going to change that. So no point looking back and worrying about it. Keep reminding yourself that you have to move forward and the fact that you now know, will help you improve your life

To give you my example, my CD4 was 660 and VL 148,000 on 10Th Sept. I had my first tests after a month and my CD4 has gone up by 1540 and VL is down to 1205... so YES being optimistic and positive is all what we need with regular medication of course. Remember we are not dying with HIV

You could suggest your partner to even join this forum and he might be able to talk to Neg partners and share his experience. It could certainly help?

Cheers, Sidd

Those are great numbers Sidd!  Yes being optimistic and remembering the things which I am grateful for has really helped me.  My next test is Nov 3rd but probably won't get results for a week a least.  I think it would be a great idea for my partner to join the forum as well, thanks for the suggestion. 

[sidd34]

"Those are great numbers Sidd!  Yes being optimistic and remembering the things which I am grateful for has really helped me.  My next test is Nov 3rd but probably won't get results for a week a least.  I think it would be a great idea for my partner to join the forum as well, thanks for the suggestion."

Keep us posted Ki.. hope all works out well