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Angels
Unregistered

Recently tested poz - a few questions
      #132391 - 12/29/04 04:40 AM

Hello there,

I've posted this message on the aidsmeds.com board, and someone advised me to try these other boards as well. I'm a 32yo man from Italy, and I've tested positive just a few days ago. While I'm trying to absorb the news and waiting for the first blood test that's going to tell me what my "numbers" are, I'm starting to look for connections with other poz people. Since I experience anonimity as a kind of protection, at least for the moment (more on that further on), the Internet feels particularly appropriate. I've posted a msg on an Italian msg board, now I'm writing a longer one here, since this seems like a very good forum and I generally feel the U.S. are so many years ahead of us. Hope to find someone who's got some spare supportive energy and perhaps the answer to a few questions, even the silly ones.

I'm sure you know better than me (I'm talking to those who've been through this before) that there's a million things that could be said at this time. I'd rather stick to the basics for the moment; I've got to live with this my whole life, so I've got plenty of time to embrace this new reality. Therefore, rather than writing a novel about my feelings, I'll leave it all out for the time being and just drop a few questions. Perhaps if I get in touch with any of you on a more personal level, we can talk about all the rest.

I've read a lot and I'm sure I'll read more. After the blood test, I'll pay my first visit to the nearest HIV center and choose whether to stay with them or go somewhere else. As for now, what I feel I need the most is to get in touch with someone who's poz, to speak to them, to hear them talk about their experience. So here's what I'd ask him/her:

1. Honestly, does your body feel any different now? Are there lots of things you can't do anymore? I'm sure the answers can vary a lot depending on therapies and side effects; I'm not on therapy yet, so I'm talking about the impact of HIV itself, rather than the meds. Like, for instance... Do you get tired soon when you practice sports? I love to swim, and I'm just wondering whether I can go on exactly like before, or I'm going to start feeling weak or something.

2. How do you handle the tell/not tell issue? I'm sure that can change over time, but for the moment I've only told 2/3 close friends. I wouldn't want my family to know, nor some of my best friends. I live in Italy's biggest city, Milan, but it's all very provincial here. I'm quite visible within the "community", and I'm 100% out anywhere else. The gay community is quite small here, everyone knows each other and believe me, there's a lot of gossip. Now my problem is: how can I fulfil my need to speak with someone who's poz, knowing that by doing so in person, I'm letting them know I am too? Please understand it's not like I feel the need to hide, like a baby who's caught stealing jam; it's just that I feel I have the right to control who knows and who doesn't, to avoid tricky situations that might arise from somebody's ignorance. So for instance, I feel that attending a poz support group could help me a lot; but if I go, quite a few people will get to know my status. How can I trust they'll handle the news in the best way?

3. I've read so much, but I'm still not clear about the mortality rate of someone who gets infected today, with the meds that are currently available. Of course I can avoid to think about it for the moment, since if anything bad is going to happen, it will be quite a few years from now; but honestly... what can you tell me?

4. is it true that nowadays, people generally don't start any therapy until they really have to? I mean, having been infected recently, how long do you think I can go on without therapy? I'm rather scared of it and its side-effects... Plus I know there's always new meds coming out, and some of them are only open to people who haven't taken some other meds...

5. a real silly one: i've read in a few renowned websites that I should avoid eating raw fish, meat and eggs. Is this true, or is it excessive?

6. and finally, what are the best websites you can highlight? Both for news/info, and for interaction? Like for instance, is there any live chat/IRC channel/newsgroup for poz people?

That's all for the moment. Thanx for your support, I'll check back for your answers and I'll take it from there.
Take care, M.

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Foster
Regular

Reged: 11/06/04
Posts: 43
Loc: Denver, CO
Re: Recently tested poz - a few questions new
      #132402 - 12/29/04 07:04 PM

1 Your body may not feel any different, but you may feel some different emotions from sad, angry, upset, depression, etc

2 Tell whom you can trust and feel comfortable knowing your status.

3 I know a few people that have are close to 20 years and still going some on meds and some not taking meds cause they dont need them. Me being Dx HIV+ showed me that I am still mortal and will die, whether be from HIV complications or something else.

4 US Health recommends no therapy until CD4 is below 350 or Viral Load is above 100,000 or you have Opportunistic Infections. 1 drugs have side effects 2 prevents HIV from becoming resistant to the drugs. if they start you on them, do not miss any doses at all.

5 I will still eat raw oysters, and my steaks Medium Rare, drink eggnog, etc. until my CD4 gets down to a low level I am in the High 800's now

6 Gay.com has some HIV+ chats, I suspect yahoo.com does too


Foster
Dx HIV+ 10-18-04, Infected in June 2004
Where there is Breath there is Hope!

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Anonymous
Unregistered

Re: Recently tested poz - a few questions new
      #132413 - 12/30/04 01:59 AM

Hi Foster,
WHAT IS Dx? Fantastic answers and words you are have given the Bro.

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Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: Recently tested poz - a few questions new
      #132417 - 12/30/04 09:59 AM

DX=DIAGNOSIS............=)
~Jessie~

HIV+ since 2-3-04
"While there is breath, there is hope".
"HIV is what I have, not who I am""

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Anonymous
Unregistered

Re: Recently tested poz - a few questions new
      #132423 - 12/30/04 05:50 PM

Great post!
3. I've read so much, but I'm still not clear about the mortality rate of someone who gets infected today, with the meds that are currently available. Of course I can avoid to think about it for the moment, since if anything bad is going to happen, it will be quite a few years from now; but honestly... what can you tell me?
Doctors are saying that you could live as long as anyone without the illness...if you are really careful with your medications when you start. read up on resistance and avoid it.. And take vitamins and live a healthy life and really learn about this illness so you could make good choices. Don't only listen to your doctor! Learn for yourself. I know in Italy the doctors are not used to listening to patients...here they are.

4. is it true that nowadays, people generally don't start any therapy until they really have to? I mean, having been infected recently, how long do you think I can go on without therapy? I'm rather scared of it and its side-effects... Plus I know there's always new meds coming out, and some of them are only open to people who haven't taken some other meds...
There is some argument about this. Although the consensus is that the meds are really powerful, which means that they have toxicities. So you want to wait till you really need medications. The current recommendations from an important U.S. panel is to begin BEFORE you reach 200 tcells...say around 200-250 OR if you have some sorts of AIDS related illness. So if you were just infected...it could be you could wait for years..like 5-6 years or more. But it depends on the virus you got...you couldve gotten a strong one or week...in any case get a resistance test NOW! You couldve also gotten a virus ALREADY resistant to certain medicaitons.

5. a real silly one: i've read in a few renowned websites that I should avoid eating raw fish, meat and eggs. Is this true, or is it excessive?
ONLY if you're tcells are low...say under 400 or so....which means your immune system is compromised and you are more vulnerable to illness, including food illnesses.

I'll answer more later. But really you should read the stuff on this site. It's really helpful...like this http://www.thebody.com/treat/basics.html
and learn and read the questions asked and ask your own.
http://www.thebody.com/Forums/AIDS/Starting/index.html
Ciao!
K.

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Foster
Regular

Reged: 11/06/04
Posts: 43
Loc: Denver, CO
Re: Recently tested poz - a few questions new
      #132435 - 12/31/04 01:52 AM

Dx is diagnosis

Also a couple good books for newly diagnosed

The first goes day by day, week by week, etc

The First Year HIV An Essential Guide for the Newly Diagnosed, Brett Grodeck, 2003, ISBN 1-56924-490-1

The Guide to Living with HIV Infection Fifth Edition, John G Bartlett and Ann K. Finkbeiner, 2001, Johns Hopkins Press Health Book, ISBN 0-8018-6744-4

Foster
Dx HIV+ 10-18-04, Infected June 2004
Where there is breath there is Hope
I am a human and not perfect!
.

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Angels
Unregistered

Re: Recently tested poz - a few questions new
      #132438 - 12/31/04 04:17 AM

Thank you for your messages. I will keep checking back. Take care, and please accept my best wishes for a peaceful and healthy 2005.

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Myhighergrounds
Unregistered

Contact me at your convenience new
      #132451 - 12/31/04 01:23 PM

Hey there,
funny how many things we have in common... :)... I am italian as well, come from the same city (but lived in Canada for over 8 years) and I totally understand where you come from.
Scrivimi a: myhighergrounds@hotmail.com e ti rispondero' al piu' presto. Una sola cosa devo aggiungere: la tua vita si e' aperta ad un altro livello - dipende da te come vuoi gestirtela.
Fammi sapere al piu presto!
Ciao,
M. (e non scherzo!) :)

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Anonymous
Unregistered

Re: Recently tested poz - a few questions new
      #132799 - 01/11/05 07:52 AM

Hey hello, some thoughts...

"Honestly, does your body feel any different now? Are there lots of things you can't do anymore?" - a high viral load can make you feel tired, and may be a reason to think about starting treatment. But just getting a +ve diagnosis you don't feel different in your body really, and can do the things you did the day before.

"How do you handle the tell/not tell issue" - this is a good little piece of a website about this: http://www.aidsmeds.com/lessons/Disclosure1.htm

"I'm still not clear about the mortality rate" - this is a natural question, and the truth is in your case NOBODY KNOWS. You might live just as long as without HIV, it depends on how well combination therapy works for you, and other, usual health things, like smoking etc etc. My dr told me to plan for retirement. Yes people with HIV still die, but many more are doing well, or even well, with treatment.

"is it true that nowadays, people generally don't start any therapy until they really have to" - yes it is. Some doctors see a benefit in giving combination therapy to people with recent infections, some do not. This aside, you may now have several years without treatment. The recommended time to start combination therapy is when your CD4 count falls below 350 but before it falls to 200. The HIV i-Base website has non-technical guides to combination therapy in English:
http://www.i-base.info/pub/guides/index.html

and also in Italian (as a PDF):
http://www.i-base.info/pub/index.html

I think they also have printed copy of the Italian guide and I am sure they would be happy to send you one free of charge.

Besides this forum, the AIDSmeds.com website has a lively forum, mainly N Americans but lots of other people from Europe and other places too.

- matt






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Tabouli
Unregistered

Re: Recently tested poz - a few questions new
      #132915 - 01/13/05 06:31 PM

You are doing the right thing by reaching out in any way that you are comfortable. The initial news is scary, but time and education will help that pass. I am sorry if I am jumping around, but there is so much I would like to say.

When you first start the meds, you will feel lousy but that soon will pass. The most important thing that I have to STRESS is that you take your medication faithfully and that you need to comply. Missing your medication is not good ever! Rest, eat a healthy diet and reduce your stress and you will feel good and healthy. Whatever your doctor recommends as far as shots/vaccinations such as the flu shot or hepatitis, etc. you need to listen. Living with HIV is not a death sentence.

You will be able to do everything, but rest and don't over do your activity. Exercise is good, but know when your body has had enough.

I have not been able to tell anyone and it's been about 2 and a half years for me. I am not gay, female, very well educated, but was involved in a long-term relationship with someone who had been living a lie. I believe he was using IV drugs and he is co-infected with HIV and Hep C. He is the only person who knows, other than my doctors.

The mortality rate has improved in most countries, except in countries like Africa where the meds are very limited or are not available.

I was told not to eat raw fish, meat or eggs unless the eggs are cooked well like in baking or scrambled. Be careful of any other meds you take or of any herbs. Never assume that you can just take anything. Some over-the-counter meds/natural supplements may diminish the effectiveness of your meds.

Last but not least, stay optomistic about your future. Listen to your doctors and if you are not comfortable with a doctor, look for another one. I hope this information helps you. It is good to reach out to others in need. God bless and take care of yourself.



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