POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: PositivelyMotivated on February 08, 2012, 07:54:23 am
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hello everyone . ive been poz for about 6 months now . i havent seen any doctors about it yet as i dont really have access to any kind of medical care . i will eventually i guess . in the meantime im just living a really healthy lifestyle and i guess biding my time before i have to go on meds ...
anyway i was just wondering if anyone else had this happen to them during their seroconversion or right around it ... the majority of these spots are on the back of my shoulders , back , and chest ... ive heard of this being an AIDS defining symptom ? which is why im confused having it happen right on the heels of my infection ...
anyway any personal knowlede or experiences dealing with this would be much appreciated ... thanks ...
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Welcome to the forums.
How can we know what you have on your skin.
You are thinking its kaposi sarcoma?
We can't really self diagnose very often about the things that present because we have HIV.
It's worrying that this is your first post but you don't tell us too much about why can't see doctors or have treatment. For HIV. Or for any health matter.
How are you going to know how long to "bide your time" until you "have to go on meds".
Really, the only solution for you is to start doing blood work on a regular basis. Gee at least 2 times a year. At least once a year! In the US, in Europe, people generally see docs about 4 times a year especially right after diagnosis. Medicine needs to watch, over time, how a person is doing. Fighting the virus and all secondary illnesses or challenges.
Why no access whatsoever, may I ask?
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Hi positively,
I agree with Mecch. You really need to go see a doctor and monitor your CD4, VL and other parameters asap. That's essential to maintain your health.
No one here is qualified HIV doctor. This forum can in no way replace face-to-face medical advice of an HIV specialist. And in any case, no one can give you medical advice over the internet without examining you.
Why don't you have access to medical care?
PS- If I may ask, did you test poz 6 months ago (or do you think you were infected since then) ?
Best
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thanks for both your replies ... i know its not ideal to not see a dr after poz confirmation but basically im broke and have no coverage ... at some point i may file for medicaid or something but , to be honest , im not trying to get hassled into taking meds early and have my name on any kind of a list for it ( seems like they may be making meds mandatory soon )
by biding my time i guess i just mean doing all the right things health-wise ... its very important to me to have that bit of off time before regular medication use , saving my liver and kidneys from it as long as possible ...
i dont know about it being KS ... they arent rasied or anything ... they look like liver spots that old ppl get on their hands , some being quite dark ... all are no biger than say a BB ... im not really hoping for a diagnosis or anything ... just wondering if anyone else experienced this ... they all popped up during seroconversion and seem to be quite permanent ... if no one else experienced such a thing then im gonna be pretty worried that i may have had a pre existing condition that has been accelerated by the virus ...
thanks ...
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thanks for both your replies ... i know its not ideal to not see a dr after poz confirmation but basically im broke and have no coverage ... at some point i may file for medicaid or something but , to be honest , im not trying to get hassled into taking meds early and have my name on any kind of a list for it ( seems like they may be making meds mandatory soon )
You may want to re-think this approach. If it is KS you may be dead by the time you file your paperwork. Why don't you consider finding your local AIDS service organization and sitting down with a case manager. They should be able to hook you up with care.
Also, what kind of testing have you had to confirm that you are HIV+?
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Hi PM, welcome to the forums.
It looks to me like you're posting from somewhere in * (as an admin, I can see where you get your internet connection from, but not your exact location). You don't need any money in the country you're in for hiv treatment or for doctor appointments either. Even if you do not have legal resident status, you can still access treatment as a person living with hiv.
You need to be seen by a doctor pronto.
edited to omit details
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:o ... i just cant imagine KS popping up the weeks of my infection ... melanoma could be the culprit if anything , in which case ill be dead either way ... im currently out of the country in canada visiting family and dont have the money for a check up ... as to my testing i used 4 mail in tests and got 1 indeterminate and 3 positives 3 months after very obvious ARS symptoms ...
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PM,
You are not actually diagnosed with hiv until such time as you have had a confirmatory Western Blot test run. Some underlying conditions can cause false positive antibody results, hence the need for confirmation.
You need to be seen by a doctor and you need to have your diagnosis confirmed - or ruled out. Until you've done this, there's not a whole lot to be said.
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Whether or not you are positive, remains to be seen. But you can learn something now about HIV. Read this site.
One thing you can learn is that "healthy living", diet, exercise, supplements, none of this do much if anything at all to stop the progression of HIV in a person's body.
Some people have years before meds. I had but a few months and even that was too long, in retrospect. There is NO ability to self diagnose progression of HIV. There is no predicting how your body is doing, based on "averages".
I hope you understand this important point.
Some people who are positive and don't understand this point, end up very very very sick, "feeling fine" for months or years and years, while their immunity wastes away to zero.
If you see a doctor a few times he/she can make better predictions than you can yourself with no evidence.
Also don't worry about the toxicity of meds for the moment, its really not a priority for you. And when it is your time for meds, you take them. And there is no garantee they will produce such and such side effects in you.
Get the point? Its all very individual and living well with HIV is done between you alone and medical science based on actual information about your body and its reactions.
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I found out the person i slept with is + and has been for over 10 years ... ARS kicked in about 3 weeks after about 10 unprotected encounters , the whole deal : fever , sore throat , maculopapular rash all over toso , bad crotch rot , sinus infection , headaches , debilitating tiredness , aches and pains , diarrhea and of course the spots ... and 3 + mail in tests ... i understand the protocol for recognised positivity with the western but all said its pretty obvious im infected now ...
@Mecch ... i get what youre saying and your own personal exp has me thinking a bit more now ... ill probably get my labs done soonish and do maybe a twice a year check until obvious drops in numbers are shown then go to quarterly checks ... i guess im just really reluctant to start this whole "HIV living" thing ... im struggling just to keep from going mad or ending my life . granted im doing damn good since the breakdown i had 6 months ago but i still feel the need for a bit of detatchment from it clinically ... idk ... i see the reason in it all , just reluctant to feel like a "patient" ...
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scheduling a drs apt for tmw i think ... dont know what theyre going to say about my non resident status ... these spots are freaking me the fuck out though , ive gotten loads of them in a very short period of time ... goes without saying i got a bad feeling about it all ... thank you for all your replies ... they are very much appreciated ...
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*
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Until this member has been truly confirmed as HIV positive we should consider this an "Am I Infected" thread.
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i just mean doing all the right things health-wise ... its very important to me to have that bit of off time before regular medication use , saving my liver and kidneys from it as long as possible ...
just reluctant to feel like a "patient" ...
IF you turn out to truly be poz (after a western blot confirmation), you need to realize that here in the 2010s, HIV is a much better managed and treated illness. Because the meds have been improved over the years, very few people have liver or kidney issues anymore. Many, if not most, people newly diagnosed these days, eventually go onto meds, go on working and continuing with their lives.
Worrying about imagined side effects is a very foolish route to take, as HAART is the only way to control HIV (no other meds, supplements, or "living right" does anything against HIV) and without HAART, HIV progesses to AIDS and then to death - which is a lot worse than any real or imagined side effect. ;)
You definitely need to
a) get confirmation to find out it you're really even HIV poz. You're symptoms mean little as those could be caused by various other issues or even psychosomatic.
b) if poz, get baseline test results of your viral load and tcells
c) quit worrying about the meds. Plenty of people in this day and age take daily meds to control all sorts of health issues. While HIV is a very important health issue, if you are poz, you don't give it a power over your life that it doesn't deserve.
best wishes at the doctors!
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PM,
Neither symptoms nor even the lack of symptoms will ever tell you a single thing about your hiv status - ONLY testing at the appropriate time and with the appropriate confirmatory tests will.
Just because you had unprotected intercourse doesn't necessarily mean you've been infected. Too many factors come into play, such as whether you were the insertive or receptive partner, and the poz person's viral load.
As I said before, there are some underlying illnesses that can and do cause false positive test results and that is why confirmatory Western Blot testing is always necessary before an hiv diagnosis can be made. And yes, these underlying illnesses can cause repeated false positive results, so you can't assume that repeated poz antibody tests definitely translates into an actual hiv diagnosis.
Also, unless the test kit you used was a Home Access, your positive results are highly suspect from the start. Most home kits are not FDA approved due to their extremely high rate of false positive results.
You need to go to the sexual health (aka GUM) clinic of your local hospital and get the proper testing done. You will not be turned away from this type of clinic due to residency concerns. They are far more interested in you knowing your hiv status so you can stop onward transmission than they are interested in your residency status.
Until you have been confirmed as hiv positive (or negative), please keep any further posts in this one thread. Thank you for your cooperation in this matter.
Ann
edited for clarity
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Hi mate,
Being in the UK I cannot comment about costs/insurance etc but please, this is your health we are talking about. You need to go see a doctor and confirm if you are +ve or not.
You may well be able to stay off meds for a while, but dont forget there are reasons why its suggested that early treatment is better in the long run.
I started atripla less than a week ago and my cd4 is ~500 - so I dont need them but its a decision I firmly believe will be advantageous in the future.
Chin up and look after yourself.
Al
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ok so its been a bit of a roller coaster 3 weeks ... i am positive with subtype B hiv 1 infection with a viral load of 35k and just shy of 400 cd4 ... The brown spots were early age spots brought on apparently by the disruptions on my epidermal layer with the rash and everything else ... so not cancerous ...
im thinking of going on meds soonish but for the life of me dont know how im going to afford all of this ... someone pls guide me in the best direction ...
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ok so its been a bit of a roller coaster 3 weeks ... i am positive with subtype B hiv 1 infection with a viral load of 35k and just shy of 400 cd4 ... The brown spots were early age spots brought on apparently by the disruptions on my epidermal layer with the rash and everything else ... so not cancerous ...
im thinking of going on meds soonish but for the life of me dont know how im going to afford all of this ... someone pls guide me in the best direction ...
A local ASO (Aids Services Organization) might be a good next stop for you. Typically they can help you sort through what assistance is available based on your personal finances and situation.
You haven't said where you are based (although your profile say US), but there is a directory where you can find ASO's on this site. The link is http://directory.poz.com/ -- there is an option to search for ASO's near a zip code.
Best
Assurbanipal
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along with help from an ASO, do you have insurance? Are you eligible for state medicaid? Also most, if not all, of the drug manufacturers now have co-pay assistance and regular payment assistance programs. (an ASO might be abe to help with the paperwork or you might have to track this yourself. a small chore with big rewards) There's also the AIDS Drug Assistance Program (ADAP) in each state to help people obtain meds.
I know it's a scary, and troublesome, issue; but remember that people have been getting treatment in America for the last two decades, so you should be able to arrange things also. ;)
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thanks guys ...
im actually from the states but in another country for another couple weeks ... i dont have any insurance , or even a job for that matter ... i will basically be homeless when i go back and am just all kinds of stressed about it all ... i dont know how im going to be able to work as my body is not handling this well at all ... im really tired all the time , like zombie tired , and my joints , bones and muscles feel like they are coated and filled with broken glass ...
that said i dont know if i should file for medicaid first or adap ?? im hearing some things that having medicaid could actually keep me from being accepted for adap .. but im really needing of some kind of medication asap i think or im just going to be completely worthless in a work sense ...
do ARVs take some of this fatigue and pain away or make it worse ... i dont know how much i can take anymore to be honest ... losing my positive attitute fast :(
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that said i dont know if i should file for medicaid first or adap ?? im hearing some things that having medicaid could actually keep me from being accepted for adap .. but im really needing of some kind of medication asap i think or im just going to be completely worthless in a work sense ...
if you apply for state welfare, you would be eligible for state medicaid, which pays ALL medical bills so that you wouldn't need ADAP. However, welfare is very limited in it's cash amount (I think it's like $115 a month) and in how long you can receive it (2 yrs tops). To continue with medicaid, you would need to apply for diasbility (and that depends on just how ill you are, and since HIV is much more controllable these days, disability is not very easy to receive).
Also make sure, especially if you're planning to be looking for a job, to check out how the state ADAP is in the state where you well be going. There are about 10 states with a waiting list for ADAP, so they aren't even accepting new members right now. (see this link for a listing of the states with ADAP waiting lists http://forums.poz.com/index.php?topic=41783)
Before moving back to the states, you really need to check into where to find some services. Definitely check out the link Assurbanipal gave you to find what agencies will be in the area you are going to. An ASO (AIDS service org) can be very helpful in helping you make the critical decisions needed to get adequate care through the available resources.
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Where are you now?
Do you have access to medical treatment in the country you are in now?
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thanks leatherman ... i wasnt aware medicaid covered HIV medication as well ... i went to the link for ASOs and it has some state dept of health facilities , but in the info for each i didnt find anything regarding specialized HIV services other than prevention and testing ... i also went to the adap link and of course my state is basically the worst one on the list :-[
@mecch im in the uk but not for much longer ... im trying to move here with family eventually though ... im a bit worried that if they have my status on record they will try to deny me citizenship as they are really cutting NHS funding lately and cracking down on ppl they suspect to be seeking 'medical asylum' ...
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i also went to the adap link and of course my state is basically the worst one on the list :-[
Flordia?? (I'm in #5 SC this past report. Though we don't have as many people on our list, we do consistently ADD not delete from the list :( ) If that's where you're returning, you might want to post the area here or even start another thread with the area in the title, as there are a lot of peeps here from the Sunshine State. They might be able to point you in the right direction a bit better than the poz directory. ;)
you definitely need to start getting your ducks in a row though (maybe google the state + "HIV clinic" or "infectious disease doctor") because once you start meds they must be taken at least >95% of the time, with no "breaks" (otherwise you might develop resistance which means the meds would no longer work about your HIV). Definitely read the the treatment lesson (http://www.aidsmeds.com/articles/Treatment_5031.shtml) section when you get a chance also. ;)
good luck with all of this. I know it's very hard, annoying, complicated and scary at first; but after you get all this taken care of, you'll be set and that'll take a load off of you. ;)
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no im in va ... was on medicaid in your state last year though when i was living in MB :P ... im going to try and get things together best i can ... just freaking out a bit as it seems so daunting working within the american medical system with a chronic illness ... ive never even gone to the docs really as ive never had to , even when i had medicaid i only went twice for basically a bad cough ... :-\ this is going to take getting used to ... thanks for your help man ... cheers ...