Newly diagnosed with low CD4

[sumd22]

Hi everyone,

First of all, let me say, this board is an amazing place and has given me tremendous comfort over the last 24 hours, which have been difficult.

I was diagnosed via rapid test on 3/31, officially confirmed on 4/16.  I had bloodwork done on 4/18, and scheduled an appointment to review my bloodwork and meet my new doctor on 5/12.  This is all happening at the Gay/Lesbian clinic in NYC which is experienced in treating HIV.  My partner also tested positive, but we have taken the news in stride with an upbeat and optimistic attitude given the tremendous advances in treatment that are available now.

Then yesterday, I got a call from a nurse there with the alarming news that some bloodwork has started coming in, and my T-cells are at 48.  I was stunned and panicked at first.  I was prescribed bactrim (daily) and zithromax (weekly) for prophylaxis.

To make matters worse, my partner is away to move his parents into a retirement community, so I am home alone to process this.

Again, I have to say, thank god for these boards, which were a great place to turn for encouragement. 

I feel reasonably good, but there are some concerning symptoms.  Shortness of breath is occasional.  I feel like I might have some sensitivity to light.  I have a persistent headache, though it isn't major.  I am also tired.

I am trying to eat fruit and vegetables and eat well, and to get some exercise.  I am also trying to take it easy - I took today off from work, not sure about tomorrow.  I have already shared this news with my boss and she is extremely supportive.

Is there anything else that I should be doing at this point besides what is happening here?  I gather that I can't see the doctor to start HAART until I get the results of my resistance test, what would be the point?

I preemptively made another appointment with another doctor (with an excellent reputation) on May 5 in case I need some medical consultation sooner than May 12.  If I get lab work results by then, I guess I will try to find out what it is and get it in hand to bring it to meet with that doctor on that day.

Otherwise, the waiting game is really hard, knowing that I am not going to start getting healthier until I start treatment.

I know that with the right treatment, I can dig out of the hole in which I find myself.  That said, I can't help but keep on searching all over the internet for good stories that reassure me that I am going to be ok.

Any guidance, advice, or suggestions would be welcome.  I can't say how grateful I was last night when I found these boards, they have given me a lot more peace than I had before finding them.

[Dj class]

   Hello and i'm glad to hear that your taking things steady and smooth considering the circumstances, don't be afraid i was on the same boat as you are but i'm managing things as they go.
   Try to be patient, call your partner from time to time so you wont feel that lonely at home, watch a movie or something. I can only say that you did the right thing you started looking for help and that's great so keep it up stay motivated and believe me things are going to get better and by the way does symptoms are normal I have them and I may say some not every person tends to get them. the best thing you can do is read for know and when you get to the doctor ask and take all your concerns out of the way...

Good luck and be safe always...
Best of my wishes for you and your parter.

[pittman]

Welcome to the forums.

I too find them useful, and reassuring. It sounds like you are taking the normal steps. The initial waiting is somewhat nerve wracking, but it is not a fast progressing disease by nature, so the weeks are not going to change much.

As to other things to do in the meantime, there is not a lot.  Avoid close contact with anyone who has a cold or flu if you can. Don't go overboard, trying to live in a bubble or anything like that. Just some common sense is all.

Eating healthy as you mentioned is good, as would be getting the sleep/rest you need.  In the end however, it will really be the meds that do the real work to let your immune system slowly work it's way back.

[2tcells]

Bactrim makes you sensitive to the sun dont go tanning. Wash ur hands, avoid sick people but if you do get a cold it shouldnt be bad the meds your already on  now helps fight off getting sick.

[Theyer]

How where you feeling the 5 mins before you knew the 48 ?

All that can be done has been done at the moment with the added advantage off the interim Doc appointment. I would simply say if you can afford it have some relaxation , soothing hippy dippy stuff, try not to have hang over inducing relaxation but that's the aim at the moment to stay in one piece until the Doc has the info to accurately perscribe those t cell boosters .

Deep breath , it will work out.
m

[sumd22]

Thanks to all for replies, feedback, and encouragement.

A brief update...

I visited the interim doctor.  He has prescribed me atovaquone for some signs of mild PCP.  He is not certain that I have it, but given my occasional lightheadedness and shortness of breath after walking up the stairs, he thinks there is a possibility and that I should treat it at a treatment level as if I have it.  (My skin is a bit pink and slightly rashy, he blamed the bactrim, hence the atovaquone prescription as he feared my body would not be able to tolerate the treatment-level dosage.)

Initially, I stopped doing anything unhealthy altogether - no processed sugars, no coffee (which was hell), etc.  That in and of itself was probably unhealthy.  I am allowing myself an afternoon coffee now and have started exercising (I was afraid to exercise with a 48 t cell count) and am eating well.

I will be prescribed meds early next week.  Assuming no resistance or other unknown medical issues, and given my viral load (186k), I take it to be a choice between Atripla and Stribild.  (Apologies if this is better suited for another thread or forum.)  Both the doctor that I saw on Monday as well as the doctor that I will see next week (I have spoken to him on the phone) seem inclined toward Atripla FIRST, primarily due to the longer track record.  They both are of the mind that since Stribild is so new, we really don't know what the longer-term side effects could be.

I get where they are coming from, but based on what I have read on here and elsewhere on the web, I think I would really prefer Stribild.  I am pretty nervous about the kinds of issues that people have mentioned on here.  I know nobody has been on Stribild for 5+ years, but provided it works to lower viral loads and increase CD4 (sure looks like it does), I kind of want to go with Stribild for at least a few years to boost my numbers and avoid some of the sleeping and psychological stuff with Atripla.  I can evaluate whatever options are available in the future, in the future.

I am sure that this topic has been discussed ad nauseum but it is such a big decision, I just want to do my due diligence.

[vertigo]

You're right to be skeptical of Atripla.  Unless the driving issue is cost, I would be dubious of any doc who is still pushing that as a first option.  There are better choices.  Stribild is one, but not the only one.  Tivicay/Truvada is another.  Of course, you'll have to get your genotype results back to make sure no resistance issues.

Read Dr. Joel Gallant's piece in this year's Positively Aware annual drug guide for some guidance:

http://www.positivelyaware.com/2014/14-03/antiretroviral-2014.shtml

[BKKKevin]

Also realize that some lifestyle changes such as increased exercise and reductions in consumption of coffee or alcohol may cause you to have aches, pains and headaches... so don't overanalyze your symptoms and assume they are HIV related... And don't give up the path of a healthy life... 

[Joe K]

Hello Sum,

You have received some great advice and you seem to be handling your diagnosis pretty well.  What I would add is that being poz is a marathon, not a race and it involves developing a whole new set of talents, which includes nourishing your mind, body and spirit.  Right now, be kind to yourself and allow yourself to feel, whatever it is you feel, without the need to do anything about it.

Becoming poz is one of the greatest challenges you will ever face, so give yourself some time to adjust.  You are not going to die anytime soon, and I caution you against being so fixated on your numbers, rather than using them as another indicator, to be balanced against what you know your body is telling you.

What I can tell you, is that you can thrive with HIV, but it takes time.  I also want you to know that I've been poz for 30 years and once had a CD4 count of 4, yet here I am.  The meds today are incredible and I promise, it does get better.

All it takes is time and right now, you have all the time in the world.

Welcome to the forums.

Joe

[dico]

Hello Sum,

You have received some great advice and you seem to be handling your diagnosis pretty well.  What I would add is that being poz is a marathon, not a race and it involves developing a whole new set of talents, which includes nourishing your mind, body and spirit.  Right now, be kind to yourself and allow yourself to feel, whatever it is you feel, without the need to do anything about it.

Becoming poz is one of the greatest challenges you will ever face, so give yourself some time to adjust.  You are not going to die anytime soon, and I caution you against being so fixated on your numbers, rather than using them as another indicator, to be balanced against what you know your body is telling you.

What I can tell you, is that you can thrive with HIV, but it takes time.  I also want you to know that I've been poz for 30 years and once had a CD4 count of 4, yet here I am.  The meds today are incredible and I promise, it does get better.

All it takes is time and right now, you have all the time in the world.

Welcome to the forums.

Joe

And now how much are your CD4 numbers ?

[Joe K]

And now how much are your CD4 numbers ?

My last count was 685.  But to give it perspective, I worked for 10 years with less than 200 and it took another 17 years for my counts to rise above 400.  During my 27th year of being poz, my counts took off and I have been above 600 for over two years now.

My point however, was that your counts do not dictate your health, and are just one indicator on how you are doing health wise.  There are many reasons for counts to fluctuate, from test to test and that's why we look at "trends" in numbers.  I spent far too many years worrying about how I looked on paper, instead of learning to understand what my body was telling me.

By the time my counts bottomed at 4, I knew that my health comprised much more than my latest lab tests.

Joe

[sumd22]

Hi all,

Thanks for all replies, guidance, and positive support. 

An update:

I had a slight delay in starting my medication due to some sort of a glitch in my genotype/resistance test, which led to having it done again.  (Somehow, the lab said that they could not test the genotype b/c my viral load was too low, even though another test said it was 186k - very strange.)  Otherwise, my labs were pretty good - no issues with liver, kidneys, etc, which was a pleasant surprise as my drug and alcohol history is not squeaky clean.

Anyway, at long last, it was completed and I started taking Stribild on 5/23!  10 days in, I feel very good.  Antibiotics are still doing a number on my GI tract but there are no noticeable immediate side effects so far; if anything, I am feeling better than I have been and my dermatitis on my face (which was awful) has disappeared, which feels like a barometer of good health.

I am going for labs tomorrow to make sure VL is headed in the right direction before arranging for Cigna to fill the 3-month mail-order supply (which they require for a "specialty" drug).  Then again on 6/23, at which point I will have been 1-month along in the process and will hopefully get a good gauge of how well I am bouncing back!

What's tricky now: I have been so obsessed with this issue since my initial preliminary diagnosis on 3/31.  I am slowly realizing that things are hopefully moving in the right direction and it is time for me to try to restore some healthy balance in my life - not to let this disease define me and all that.  My partner (also newly diagnosed, but with much better labs than me) and I got married 2 weeks ago (we have been together for 5 years, my insurance is much better than his so we figured, why not do it - we want to live a long and healthy life together, so I want to make sure he has the best medical care possible).  But I am driving him crazy because he wants life to carry on as normal whereas I am talking about HIV issues all the time - we both probably need to meet somewhere in between, but we are still sorting that out.

The other thing is that my GI tract has seen better days.  It has been loose for a while (I didn't realize it was the HIV causing this) but antibiotics are really exacerbating the situation.  Yogurt for breakfast every day!

I feel so fortunate to live in an era in which options are available for someone with just 48 t cells, and I am cautiously optimistic for good news in the coming months in my labs.

Hoping to be able to transition to being a little bit less self-involved soon so that I can provide good support to other newbies in the way that others have for me thus far!

[sumd22]

Ok, first labs (was only Viral Load) = VL down from 186000 to 2300 after 12 days on meds.  I am so happy!!  I (heart) Stribild!