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Author Topic: My first post here, so bare with me please  (Read 568 times)

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Offline Waverunner

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My first post here, so bare with me please
« on: December 06, 2018, 08:58:51 pm »
I was diagnosed positive a couple weeks ago after having mild PN signs in one foot.  Since then, like most here I presume, have done nothing but research and research from scholarly articles to real stories and accounts.  Because of what Iíve learned and the fact that Iím in my early 60ís, my dilemma at this point is whether to seek treatment or not.  Iím sensing that there will be little to gain at my age.  I have no other known major medical issues but I do smoke.  I know they say to quit but seriouslyÖ.. this isnít a good time.

To compound matters, I live in a relatively small town and the nearest ID is an hour away.  Alongside that, my state has the ďnotificationĒ law and my local health department would be notified.  The problem with that is I have an acquaintance that works in that department.  Iím fairly well know in my community and disclosure is very important to me.

Please feel free to weigh in your opinions.  I do appreciate honest and diverse ideas.

Thank you

Offline JimDublin

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Re: My first post here, so bare with me please
« Reply #1 on: December 06, 2018, 10:51:59 pm »
Hi Waverunner,

Sorry to hear of your diagnosis. Just to clarify have you just tested positive on initial testing or have you had additional confirmation/follow-up tests done? Also what are your CD4 & Viral Load results looking like?

Quote
Because of what Iíve learned and the fact that Iím in my early 60ís, my dilemma at this point is whether to seek treatment or not.  Iím sensing that there will be little to gain at my age.  I have no other known major medical issues but I do smoke.  I know they say to quit but seriouslyÖ.. this isnít a good time.

Early 60's ... the man downstairs is 82 and still tying to get his leg over, and if he ever tested positive i would be telling him to get treated so he can't pass it on. Untreated HIV is also doing both measured and unmeasured damage to you and having no major issues can change rapidly.

Jim

« Last Edit: December 07, 2018, 03:55:12 am by JimDublin »
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Offline MarkintheDark

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Re: My first post here, so bare with me please
« Reply #2 on: December 07, 2018, 05:38:55 am »
I'm also in my early 60s, a smoker, but 26 years poz.

fwiw, the interwebs is full of conflicting, confusing information, particularly for someone in your situation who's navigating this alone.  Nor am I clear if the testing was done locally and anonymously.  Assuming you're in the States, I wonder if you could connect with an AIDS service organization like AHF for a better read on the situation in your state (i.e, exactly what gets reported to whom).  tbh, you're probably going to have to be persistent.  At this point, imo, you really shouldn't be tackling this alone.

Here are some online resources: http://hivinsite.ucsf.edu/InSite?page=li-03-01

I'll reiterate what @JimDublin said, that knowing your CD4 and viral load numbers is pretty important.  So, too, I'd encourage you to seek treatment for the sake of your own health.  And keep us apprised of your progress.
« Last Edit: December 07, 2018, 05:58:36 am by MarkintheDark »
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline leatherman

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Re: My first post here, so bare with me please
« Reply #3 on: December 07, 2018, 07:09:47 am »
Iím in my early 60ís, my dilemma at this point is whether to seek treatment or not.  Iím sensing that there will be little to gain at my age.
not dying an AIDS death within the next decade is a pretty big gain. ;)

living with HIV for 34 years and not dying from AIDS a couple of times in my 30's, I found I really had to plan on living a normal lifespan. The biggest problem for me is that my 101 yr old grandmother keeps reminding me that at 56 I'm barely halfway through a normal lifespan for my family.

Even if your family genetics might indicate that you might not live into your hundreds, dying from AIDS is something I highly suggest you try to avoid. AIDS nearly killed me a few times, it killed my previous two long-term partners, and it killed almost more friends than I can count. It's a terrible way to die....especially when these days a few pills a day keeps that kind of death from happening.


To compound matters, I live in a relatively small town and the nearest ID is an hour away.  Alongside that, my state has the ďnotificationĒ law and my local health department would be notified.  The problem with that is I have an acquaintance that works in that department.  Iím fairly well know in my community and disclosure is very important to me.
welcome to the crowd. ;) many of us live in rural areas and have to travel to see doctors (for example my husband and I live in SC and travel an hour into Charlotte for our health care). But this kind of transportation issue affects other illnesses too. Many people have to travel to more urban areas to get health care. (a great uncle of mine had to travel from wilmington to cleveland to get a pacemaker installed. my mom-in-law travels an hour and a half from outside Youngstown to Cleveland for her cancer healthcare.)

I believe all states have some sort of health dpt notification law for (contagious) STIs including Gonorrhea, Syphilis, Chlamydia, and HIV. Your acquaintance in the health dpt is bound by HIPAA to maintain your privacy about health matters - and can be fired and sued for disclosure.
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline virgo313

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Re: My first post here, so bare with me please
« Reply #4 on: December 07, 2018, 03:22:11 pm »
Hi Waverunner,

I am quite "new" but i have at one stage AIDS. Was warded but feel fine then, but i have seen others/those just lying on beds & it is not a pretty sight. I am grateful & understand what AIDS can do to people.

I have just reached 50 & i am looking forward to many more years. I know i will not be here today if i am not on ART. As jim said, health condition change fast if HIV is not treated. With just a pill a day, you you will not have to worry about this issue. I also travel far for Dr appointments, but now it is only twice a year. It is just a routine for me now.

Look at another scenario.. If you do not want to seek treatment & begin to "look weak", wouldn't that create other to speculate "your condition"? Would it be better to be "look healthy" and avoid speculation?

hope that you choose treatment & be healthy.   
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!

Offline Waverunner

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Re: My first post here, so bare with me please
« Reply #5 on: December 07, 2018, 04:31:46 pm »
Thank you all for your replies,,, much appreciated.

Iíve tested 3 times anonymously with the antigen swab test, all at 3 different clinics.  I doubt that I could have 3 false negatives.  I have had no further tests so I donít know the CD4 and Viral Load.  Having these would send me right off to the health department which as you know is a biggie for me.

Speaking of mandatory state reporting regulations and HIPAA, it has always amazed me how the government entities havenít learned by now that this is a very unproductive measure in trying to control this disease.  I would think that for their benefits of doing this outweighs the community control of new infections because more people would test without fear of its disclosures.  I remember their discussions early on when implementing these rules that they were aware of this consequence.  Apparently they donít care.   I donít believe Iím unique on this.

In my lifetime profession, I have always had the HIPAA regulations as a part of my work.  Although on paper they sound good, in reality they are impractical.  For example, look within your doctorís office.  How many people are working there?   If each and everyone keeps your secret to themselves, itís still that number who knows.  Trust me it doesnít take long for some to tell someone on the outside that they trust, IE; a spouse and before too long they tell someone they trust, etc. etc.  I call it ďthe watering down trustĒ factor.   I canít count how many times over the years Iíve been in health care facilities where patient/doctor conversations can and are overheard by other patients.  At my GP while waiting for my doctor to come in, I often hear most of the conversation in the next room he is in.  Recently I had a colonoscopy and while in recovery the doctor pulls the curtain to give me the results while other patients were next to me only separated by a curtain.
I donít plan on dying of AIDS.   Iím quite aware of the horrific nature.  I would never let it go that far.  Letís just say I have always been an advocate of euthanasia. 

All the data from research suggests that living with HIV and on treatment still shortens lifespan by approximately 10 years, ďNear Normal Life ExpectancyĒ as they like to say.  So as a male living in the U.S. that would give me approximately 7 more years if treated.  When I ponder that and the side effects and exacerbated normal health conditions of my age group from ART, I have to question the quality of those 7 years.

Thank you Martin for the link.  I have done some research on this site but so much more to look at.

Offline JimDublin

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Re: My first post here, so bare with me please
« Reply #6 on: December 07, 2018, 04:53:46 pm »
I think your looking at some outdated statistics and somehow thinking they apply to individual cases whilst forgetting co-factors.

Consider this without treatment you could simply be dead soon depending on how much unnoticed damage is being done, it would be a shame at what is not an old age.

Antigen swap  ::)

I do believe that the best advice has been given in this thread and that is to treat your condition if you are indeed living with HIV. However at this point without actually having a dignoisis & lab results it's just wild speculation and there is nothing we can really add.

Please go and actually test and if results are positive on confirmation testing then consider treatment. Until such time I've moved your post to "An I infected" and I am going to ask you to only post in this single thread, it's just a reactive antigen result and we see false reactives on screening test weekly.

I wish you all the best but truly stop trying to analyze this and don't ignore this but do get tested correctly and talk to an ID doctor.

Jim
« Last Edit: December 07, 2018, 05:19:49 pm by JimDublin »
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Waverunner

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Re: My first post here, so bare with me please
« Reply #7 on: December 07, 2018, 04:58:06 pm »
I'm sorry Jim, I hope I didn't waste anyone's time.

Offline JimDublin

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Re: My first post here, so bare with me please
« Reply #8 on: December 07, 2018, 05:10:55 pm »
Look the advice giving to you in this thread from firsthand experienced well versed people living with HIV, is not going to be a waste as someone will read it and undoubtedly benefit from it.

I do hope however that you also benefit from it. I can again not stress enough that knowing for sure by testing and than talking to an ID doctor about treatment is best.

Please don't ignore this, its not something worth ignoring. If it is HIV it's not going to go away and, could quite quickly do permanent damage. So do test.

I wish you well.

Jim
« Last Edit: December 07, 2018, 05:37:23 pm by JimDublin »
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline JimDublin

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Re: My first post here, so bare with me please
« Reply #9 on: December 07, 2018, 10:55:43 pm »
I'll send you an email shortly in regards to your request.
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

 


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