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Author Topic: Our brains...  (Read 2499 times)

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Offline idee

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  • Posts: 319
  • Hi...
Our brains...
« on: April 02, 2012, 10:24:01 PM »
How many of these viewers are actually knowledgable enough about our disease. Someone better than what people assume us to be?
I saw a doctor today who is a GYN and told me that our brains will soon be infected by this virus and it will cause us to go "crazy". The exact word this doctor said was crazy.
My first thought was I have HIV not dementia. Does HIV cause bad memory or dementia? Does it cause insanity?
I have been postive going onto 18 years and wonder when this is suppose to happen.

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Our brains...
« Reply #1 on: April 03, 2012, 05:22:23 AM »
This GYN you saw sounds incredibly ignorant where hiv is concerned.

Hiv-related dementia is only seen in people with long-term UNTREATED hiv. It's mainly only see today in people who are not diagnosed until they're in late-stage aids. These people are usually diagnosed while in hospital fighting PCP or some other aids-related OI, and have very low CD4s and a very high viral load.

Hiv-related dementia was fairly common back in the '80s and early '90s - before we had effective treatments. It's rare today.

To call dementia "crazy", regardless of the cause of dementia, is not only insensitive, it's also very unprofessional. You might expect that characterisation from someone with less than a high-school education, but not from a doctor who presumably went to medical school. Where did he get his diploma - out of a Cracker Jack box?

There is an open debate whether or not even treated hiv can cause forgetfulness or what's sometimes called "brainfog", but these problems are a far cry from true dementia.

To tell an hiv positive patient that they're going to go "crazy" is insensitive - and ignorant - in the extreme. Is this the same doctor who asked you how you became positive? (the one you mentioned in the LTS forum, where I cannot respond)

If I were you, I'd do one of three things if this were a doctor I had to deal with on a regular (even if only yearly) basis...

I'd either take it upon myself to raise his level of hiv awareness, or...

I'd report him to the relevant authorities to let them know in no uncertain terms he needs to be updated on hiv matters, including awareness of how to speak to people, or...

I'd take my health care business elsewhere, and I'd be damned sure to let him know that it was his ignorance regarding hiv that caused my move.

I'd be most likely to do all three, actually. Simply leaving his practice would do nothing for other people with hiv who may have to deal with his ignorance and attitude.

I'd also alert my hiv doctor to this guy. I would hate to think my hiv doctor may refer other poz women to this GYN.

If he's also the guy who asked you about being in a documentary, I'm glad you said no. I don't think I'd want to be involved in an hiv project headed up by a man who has no idea what hiv in today's world entails, much less a doctor who referred to having dementia as being crazy. And that's coming from someone who is totally out of the hiv closet and would normally have no problem taking part in a documentary. (I already have in fact - one that was done by the gay British actor, Stephen Fry.)

In short, he's a jerk who should keep his mouth shut when he doesn't know what he's talking about - at least until such time as he brings himself up to date - and has some sensitivity training.

There's no excuse whatsoever for a doctor to behave like this in the 21st century. NO EXCUSE AT ALL!!!

Can you tell this type of crap out of a doctor makes me angry? If it's not obvious - IT PISSES ME OFF!!!!
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline BT65

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Re: Our brains...
« Reply #2 on: April 03, 2012, 06:04:35 AM »
I cannot believe that doctor would say "crazy."  What an insensitive asshole. 

I've been diagnosed for 23 years, and remember the earlier days and people believing they had "bugs" inside of them (and other things).  I haven't run across someone with AIDS dementia in quite a while.

The brainfog thing, that's another story.  I'm not a researcher, but I do believe I'm much foggier than I used to be. Of course, that may not be only attributable to the AIDS.  It could be getting older, having a traumatic brain injury years ago, coding for over 5 minutes, and/or drug abuse.  So, who really knows.  I believe these studies are ongoing.

I'm with Ann about reporting this doctor.  He doesn't seem knowledgeable when it comes to this virus, and he has no character.  I hope you get another, better qualified, doctor.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline idee

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  • Posts: 319
  • Hi...
Re: Our brains...
« Reply #3 on: April 03, 2012, 09:17:59 PM »
I am going to a new gyn next year. My Mom actually took his info and is making some complaint. She is very angry.
I am still afraid to come out about my HIV statis. I am afraid to be hated.

Offline Nancy

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Re: Our brains...
« Reply #4 on: May 22, 2012, 06:23:46 PM »
They are doing a lot of research on the effect of HIV on the brain...

I've just recently finished my 3rd clinical trial.  So there is a lot of concern about how it does affect the brain. They are testing me opposite drug users to see how much is HIV and how much is drug use that is affecting it.

They put me thru mental tests, brain scans, MRI's, spinal taps, reflexes, memory tests.  I have found my memory has gotten a lot worse ...

They've even ask that we donate our brains to science to do more research... so now I'm an official organ donor :)
Deborah Cadigan-Little
Diagnosed Oct 1993
Member since Sept 2002
Meds Dec 2003

Offline Nancy

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  • No one belongs in jail for a Plant!!!
    • The Human Solution International
Re: Our brains...
« Reply #5 on: May 22, 2012, 06:31:56 PM »
idee

I fully understand the stigma of not 'coming out' with your status.  I have lived in a small urban town for the last 23 years... People I've known since I moved here still don't know.  I have the pharmacy that is in a neighborhood that has a big HIV population mail me my meds so that I don't have to pick them up at my local pharmacy.

I go to UCSD medical center, which is an hour from home, so that I don't have to deal with any of the local doctors.  Luckily they have the best HIV treatment around my area.

Is there a Medical Center around you that is further from home, but has extensive experience with treating HIV?  I ran into a lot of bad experiences dealing with Dr's offices that weren't up on the latest and the stigma of having the staff actually shy away from me.
Deborah Cadigan-Little
Diagnosed Oct 1993
Member since Sept 2002
Meds Dec 2003

Offline idee

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  • Hi...
Re: Our brains...
« Reply #6 on: May 22, 2012, 11:38:36 PM »
I am seeing a new ob/gyn next year. I just wanted someone close so I did not have to go so far.

Offline idee

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  • Hi...
Re: Our brains...
« Reply #7 on: May 22, 2012, 11:42:16 PM »
I think that is neat you volunteer for these studies. The last study I did was when I had my daughter. While I was pregnant I took a medication or placebo; which one I don't know. But my daughter is healthy and I haven't done anymore studies. The closest to studying I get is helping my daughter with homework.

Offline boopy103

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Re: Our brains...
« Reply #8 on: June 23, 2012, 06:59:04 AM »
  Hello I am a male just looking through the forums  and looked in on this one for women. Perhaps I shouldn't even be in here.  How ever the subject brain caught my attention.   Last year this time I was using a walker.  I am doing much better now thank you.   I had what they call HIV/Encephalitis of the brain.  That is an infection in the brain.  I was falling down  a lot and not really thinking all that straight. It got to the point that when I fell and lost my balance it was like complete paralysis set in on my legs and could not get up or even pull my self up . And they all said I was acting out of my mind in a way.   That is when I went to the hospitals ER and checked in.  At that time it was not known that I was HIV+   I was already seeing a Doctor on it that he looked at me and put me on Disability he said no way can I work like that and I had a appointment set up with a neurologist.  Well I never made that appointment because I went in the hospital before my appointment ever came. Four months on a strong antibiotic along with my HIV meds.    I am still on disability and there was some permanent damage. But no longer need a walker or use my cane that much anymore.  Very optimistic on life now. It was a close call.  And I am thankful to be alive right now.   So there is are things that can occur with the brain if left on treated for the HIV.
Have a wonderful summer and God bless


How many of these viewers are actually knowledgable enough about our disease. Someone better than what people assume us to be?
I saw a doctor today who is a GYN and told me that our brains will soon be infected by this virus and it will cause us to go "crazy". The exact word this doctor said was crazy.
My first thought was I have HIV not dementia. Does HIV cause bad memory or dementia? Does it cause insanity?
I have been postive going onto 18 years and wonder when this is suppose to happen.


Offline Ann

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  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Our brains...
« Reply #9 on: June 23, 2012, 07:17:49 AM »
Boopy,

No, as a man, you are not permitted to post in the Women's forum. Please read the Welcome thread that is "stickied" to the top of this forum's index page.

Do not post in the Women's forum again. Also, please read the Welcome threads in any forum where they appear, so you don't make this kind of mistake again. Thank you for your cooperation.

Oh, and welcome to the forums.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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