Living without HIV

[oksikoko]

Did you all see this news story about the guy in Lexington, KY, who was diagnosed with HIV and on treatment for 8 years before he found out he was never positive to begin with?

http://www.kentucky.com/2013/09/01/2799348/lexington-mans-lawsuit-says-doctors.html

I had a dream in which this happened to me, but it was bittersweet. Sure, I'd like to be negative, I guess, but it would actually be hard now that I've learned to live positive.

The article I read had this weird line:
"By failing to follow the standard protocol, and telling him that he was HIV positive, telling him that he could only have relations with HIV-positives, then that damage has been done."

I don't know if it's the "have relations" euphemism or the use of "HIV-positives" in a collective sense, but that sentence kind of skeeves me out.

[mitch777]

Wow.
Just wow.

It makes one wonder why he didn't have more tests done but I read his response to that in the article.
His VL had to be undetectable from day one but...
Taken for face value, the torment and anguish this guy went through for 8 years with that stupid advice given should deservedly give him a good settlement. Whoopty-doo.

It skeeves me out too.

ps- I never had that dream. Oh well.

[buginme2]

He should sue for the mere fact that they told him he can only have "relations" with people that are HIV positive.  I can't believe an HIV clinic told him this (granted its Kentucky but come on).

I had a dream in which this happened to me, but it was bittersweet. Sure, I'd like to be negative, I guess, but it would actually be hard now that I've learned to live positive

I've thought about this also.  Back during ask the "cure" talk I've wondered if they.do cure HIv how many people would take it and how many would say no thanks.

also, this guy was a bit of a drama queen with the whole I thought I was dying thing over and over.  That's prob for the lawsuit.

[tednlou2]

Wow.  This would mean no resistance testing was done either, right?  This would be such great news, but I can see the bittersweet feelings.  I think it would be interesting to study him and his records, to see whether he had complained of fatigue, illness, and other issues.  I think it would be interesting to see whether a false HIV diagnosis can cause someone to begin to have symptoms.  It seems like this could be used for something good, to see how much the mind plays a role in how we perceive our health.  I mean, if he started meds, because of complaints of fatigue and illness, then that may tell us how much stress and anxiety plays a role in causing both perceived and real health issues, when labs indicate you are in good health.  I realize looking at one case may not say much about that.  But, I would bet he isn't alone. 
 

[jkinatl2]

I rather think that the real story is the clinic that gouged the government out of hundreds of thousands of dollars in lieu of a forty dollar test and adequate followup.

Also, for the newly diagnosed, PLEASE don't' be this guy. Follow up on your treatment, and don't just be a victim of it. LEARN about the disease, and learn about the stuff YOU are putting into your body. Be a partner in care, and not a flaccid care-rag.

It's sweet to think that things should be better, but as ofthis moment, we have to act as though we are in the slightly pre-apolalyptic world we are in. 

Make the world a better place? Absolutely! But live in the one we're in, especially with a chronic and potentially catastrophic disease.

Hope that clinic is torn down and replaced with a clinic.

And hope those physicians are fired and replaced with physicians.

[leatherman]

He should sue for the mere fact that they told him he can only have "relations" with people that are HIV positive.  I can't believe an HIV clinic told him this (granted its Kentucky but come on).

lots of doctors discourage sex altogether so I thought this was pretty progressive.

Hope that clinic is torn down and replaced with a clinic.

And hope those physicians are fired and replaced with physicians.

amen!

In all those eight yrs did he never have a VL test? did he never have a cd4 test? either of those should be drastically flag-raising different if he was under care for HIV and yet not positive.

And I just hate stories like this. there is sooo much missing data!

"telling him that he could only have relations with HIV-positives" YIKES! Did he ever have those relations? Unprotected? Is he infected now??

and finally my last questions: he's 43 and receiving a Social Security check? Is that a disability check? is it related to the HIV? just wondering, not suggesting anything in particular

so many facts left out to know what to think about this.
However, I see in the comments section, the denailists know exactly what to think. Ouch!

[JungleJungle]

Well...at least i guess it was the longest case of PrEP in the history of ART...LOL

[mecch]

Hey, its HIS lawyer who used those words, (clumsily chosen), about "relations with HIV positives."  Where does it say or prove health care workers said that to him.

May i just observe that several actors in this scenario seem to be "low information".  He says he distanced himself from his life because he thought he was dying. But if he was DIAGNOSED and treated in the 2000s and was getting undetectable viral loads, he didn't get the memo that he wasn't dying???

Well, that point aside, the story sounds possible, actually sounds true, but fishy. If true, there's been gross medical malpractice.

(Speaking of fishy stories, what happened to Uncle Poopie Honey Boo Boo and the jail time for the "source" Typhoid Mary??? Hmmm?)

I believe I read similar stories before about falsely diagnosed AND treated people.

Anyway these forums just had one such story this summer. 




 

[wolfter]

I can't believe an HIV clinic told him this (granted its Kentucky but come on).

Seriously?  If you don't notice anything offensive about that statement, then you don't even remotely compare to the great people of KY.  Having beloved family and friends in them there parts, I can attest that they hold more compassion and would never denigrate an entire group of people based on a perceived notion or stereotypes.

We have several active members here from KY and I've been fortunate enough to know them personally.  My admiration for them is great. 

I realize this was probably just a "tongue-in-cheek" comment, but I find it totally unnecessary.

wolfie

[socalpoz]

A befuddling story, I really find it hard to believe that especially during early prognosis and starting meds that his doctors weren't running multiple tests and observing him very closely. There has to be so much more to this story that we are not being told.

I will admit I was in great denial or great hope that my first test was wrong and researched the internet heavily for evidence to that effect. I also went so far as to be tested two more times just praying that my original diagnosis was a false positive.

[tednlou2]

A befuddling story, I really find it hard to believe that especially during early prognosis and starting meds that his doctors weren't running multiple tests and observing him very closely. There has to be so much more to this story that we are not being told.

I will admit I was in great denial or great hope that my first test was wrong and researched the internet heavily for evidence to that effect. I also went so far as to be tested two more times just praying that my original diagnosis was a false positive.

I went a month, thinking I was neg.  At my first visit at the HIV clinic, this pharmacist counselor said she spoke with the head HIV doc, and they both felt I had a false positive.  In fact, she said she was certain of it.  She based this on my CD4 jumping from 171 to over 1,000 and my vl was less than 400, in between the time I was released from the hospital and my first visit there. 

Well, I was shocked, but so happy.  I felt it was all a huge mistake, and I had been given a second chance to make sure I never get infected.  I was so ecstatic.  I only knew the basics about HIV, and this medical professional was telling me she was certain I was neg.  I had a follow up scheduled for a month later.  I was given the bad news that she was so wrong.  I was furious with her.  Of course, she denied getting my hopes up, by saying she was certain.  My partner was there and knows what was said.  She should have never said what she said.  She could have just said they wanted to double check, just to be certain.  Although, it is my understanding the WB was already done, when she told me that.  Even if it wasn't, she should have never told me that.  When I got the news she was so wrong, it was almost similar to being told the first time.  I was crushed again. 

I recently had an appointment to go over meds, since I hadn't discussed regimens since 2009.  I refused to meet with her.  So, I had to meet with a resident, which would normally require she sit in.  But, I didn't even want to see her.  And, the resident seemed way more knowledgable, than she.  I know there are many great HIV medical professionals, but there are some who just seem to have the job, because they couldn't find work anywhere else.

[buginme2]

Some additional details about this today.

First the clinic "The Blugrass Clinic" which is part of the University of Kentucky Medical Center is where he was "diagnosed" with HIV.  He was given a Weesterb Blot test which showed he was negative.  Apparently the doctors told him he was still positive and gave him literature on how to "cope." 

He was put on meds (including AZT). 

Later he went to get care from the VA which required proof that he was HIV positive.  Since his western blot was negative there was no proof that he was positive.

He has since filed a lawsuit. 

This screams malpractice.  From ignoring the western blot, prescribing AZT (he was diagnosed in 2004, since he wasn't positive how could they have done a resistance test. So why AZT?). Then they tell him he can only have sex with HIV positive people which could then put him at risk from getting HIV.  This place looks amazingly incompetent.

http://www.huffingtonpost.com/2013/09/03/bobby-russell-hiv-veteran-sues-hospital_n_3860308.html