Newbie here

[latingalnc]

I have my first appt with the Id specialist. What should I be asking him now since it's my first time since my initial visit and my first set of labs? What should I be looking for in my labs? Until now I have been healthy except for having Fibromylgia. It's really not great to heave with HIV because I can never know if I'm tired from the HIV or the Fibromylgia. I have been looking at the lessons and treatment questions, but I'm still confused, and I'm a medical professional. Ha. It's so different when it hits home.  I'm on a hypoglycemic diet due to the meds I take for the fibro, and have been losing weight like I'm supposed to. Exercising is a problem due to pain issues some times. I'm eating no sugar, no bread, no rice, no potatoes. Is this going to be OK with being positive? Do I ask my ID doc or my primary care doc? She doesn't know anthing about HIV at all.
HELP !

[Andy Velez]

Hi and welcome!

First of all, get used to carrying a pad and pen with you all the time. That way in unexpected moments when you think of something to ask you can make a note and not have to depend on your memory.

It's troubling to read that your primary care doctor is not up on HIV issues. One of the most important tools for staying well is to have a good working partnership with your doctor. I suggest you consider changing doctors. You want someone who has experience with HIV.

When you go to an appointment ask the questions about which you want answers. If your doctor doesn't know then ask "how can we find out?" All of those questions about your food consumption are subjects you should be discussing with your doctor and not just wondering/worrying about your own.

You're always welcome to bring up anything that you're concerned about here but this is not a substitute for having a good doctor/patient partnership.

Keep us posted on how it goes and feel free to bring up anything that's on your mind.

Cheers,

[latingalnc]

Thanks you sound like my boyfriend. He said the same thing a few days ago. I guess I  should listen huh!?

[Andy Velez]

Yes, you should. Otherwise why ask for advice!!!!

We're giving you the real deal here.

Good luck with getting this handled and keep us posted.

Cheers,

[Ann]

Hi Latin, and welcome to the forum.

I can't help but wonder what the nature of your fibromyalgia diagnosis was. As I understand, there is some sort of test where they check certain points on the body for tenderness, but also from what I understand, this test is not fool-proof.

Here's what I'm getting at: The symptoms of fibromyalgia and the symptoms of hiv can be very similar. As there does not seem to be a definitive test for an absolutely conclusive fibromyalgia diagnosis, I can't help but wonder if you've been misdiagnosed with fibro when it was actually hiv causing your problems all along. This could be something you need to look into.

Further to Andy's sage advice concerning having a notebook, when you go into your doctors office, make sure you write down the answers to your questions.

Back when I had lots of questions, I'd leave a space after each one in my notebook so I could write down what was said - as it was said. I learned to do this the hard way. I'd be in the office and think - I don't need to write that down, I'll remember. Then as soon as I left, I'd find I couldn't remember the details at all, or I'd be unsure if I was remembering them correctly.

If you get any unfamiliar words thrown at you, don't hesitate to ask for the correct spelling so you have an easier time if you want to do some research. If your doctor frowns on your attention to detail, find a new doctor. Any good one will welcome a patient being pro-active with their medical care. You need a doctor who will work WITH you, not ON you, if you see what I mean. The doctor-patient relationship should be a partnership, not a dictatorship.

You might want to learn about what your main test results (absolute CD4 count, CD4 percent and viral load) mean before you go in to get them. Check out the Blood Tests Lessons in the Lessons section for a very good explanation. (T-cell is another way of saying CD4 - you'll see why I'm saying that when you follow the link)

Good luck with your first appointment and keep us posted.

Ann

[latingalnc]

Thanks again for the advice. It just seems so overwhelming right now. One day i think I'm OK and then the next I feel like the rug has been pulled out from under me.  Yes, it's possible it could have been HIV all along but I won't know how long I've been infected or around about when it happened until Thursday. I've never been like this before and I guess it's just making me ILL.(upset) I like to be in control of things and this dx is not letting me yet, but I'll keep on keeping on. Thanks again. I have printed the lesson on numbers and cd-4, vl, but I'm still confused.

[Ann]

Latin,

Go easy on yourself - you don't have to learn everything all at once. There's so much to learn - but hey, you've got time. Trust me on that. If there is something specific that is confusing you in the tests lesson, let us know - we might be able to make things clearer for you.

The ups and downs in your feelings are par for the course. Many people liken the first few weeks or even months to being on a rollercoaster ride of emotions. The ride does slow down and even out in time. Just go with the flow - there's no right way or wrong way to feel about all this. Try to accept your feelings - you'll find it easier to cope if you can do that.

Many people benefit by having a journal they can record their daily feelings. I did when I was newly diagnosed and I can't tell you how valuable it is to me at times. It's so good to be able to look back and see how far I've come since then. It can be a real boost in the future, but more importantly, it will be a place right here, right now, where you can get things off your chest.

Hang in there hun, it really does get better.

Ann