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Author Topic: HIV and Neurological Damage  (Read 2702 times)

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Offline tednlou2

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HIV and Neurological Damage
« on: June 14, 2010, 02:13:26 AM »
This article is scary, frankly.  For those of you who have been poz for a very long time, have you seen this kind of damage?  Or, do you think some, like this guy, are just more prone to manic depression or whatever he is experiencing?  He's been poz since 1984.  Besides death, effects to the brain are so scary.  Losing your mental faculties is one of the scariest things--HIV poz or neg.

http://www.thebody.com/content/art56977.html

Modified:  I wanted to clarify that I know many of LTS members have seen some awful things with the people they knew and loved before HAART.  I should have clarified people who made it out of the dark days and are now on good therapy. 
« Last Edit: June 14, 2010, 02:41:57 AM by tednlou2 »

Offline PeteNYNJ

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Re: HIV and Neurological Damage
« Reply #1 on: June 14, 2010, 02:32:04 AM »
I wonder how many people were undiagnosed bipolar before contracting HIV?  If you look at the symptoms of one who is in a manic phase, you can understand how easily it would be to put yourself in harms way for getting HIV.

I feel like this was in a thread somewhere else on here...hmmm

Offline mecch

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Re: HIV and Neurological Damage
« Reply #2 on: June 14, 2010, 10:18:27 AM »
The bipolar guy in the article. I'm sure its 100% authentic personal experience he recounts, and also those of others in his support groups.
However, bipolarity is very high in the zeitgeist these last few years.  Suddenly in Switzerland we all have people in our circles who are bi-polar.  Reminds me of attention-deficit diagnoses from a decade ago. One day, hardly anyone had heard of it. Then suddenly so many people were diagnoses as suffereing.


But I do consider this all very plausible and rather frightening:

As Dr. Singer, the UCLA neurologist, explained to me after she gave me my diagnosis, HIV infects cells in the brain that, when they die, release chemicals that cause adjacent brain neurons to die. This infective process can go on despite anti-HIV meds because << the blood brain barrier excludes some drugs from the brain. [View a chart of several HIV meds and their level of penetration of the blood-brain barrier; or read a discussion on brain-related complications and HIV/AIDS between TheBody.com's editorial director and noted HIV/AIDS specialist Pablo Tebas, M.D.]

The primary targets of HIV are the mood controlling structures in the brain and then later the cognitive parts of the brain and then those parts that control the limbs. The cognitive effects of HIV infection are primarily in the executive brain functions which allow us to choose between competing actions, to assimilate new information, and to analyze data. Because the executive functions are most used by professionals, early HIV dementia is most often diagnosed among those people. I am one of those professionals. Due to damage to my executive function, I retired on disability in 2008.


On the otherhand, shouldn't we take all these studies in careful consideration among other things, such as lifestyle, social stresses, economic stresses, and aging.

Also, HIV+ people may just have more closely examined brains than the general population, now that the medical establishment is establishing this as a research area.  

Personally I find the Body writer's last two paragraphs at bit melodramatic and martyresque.  But I do thank him for taking the time to personally explain a sobering aging with HIV experience.
« Last Edit: June 14, 2010, 10:24:34 AM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Online Miss Philicia

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Re: HIV and Neurological Damage
« Reply #3 on: June 14, 2010, 10:32:55 AM »
I only scanned the article, but I always caution the n00bs to draw too many conclusions from those of us that were treated previous to 1996/HAART.  The writer, like myself, assuredly went many years with a detectable viral load (personally I went approximately 18 years with a detectable viral load, yet I'm the same vile, caustic, bitter queen that I was when I was 19 years old, and I'd say my cognitive functions are the same as they were in college with the exception of any normal effects of aging).  Like the writer, I also attend a support groups for long-term survivors -- it's a very small group and I'm not comfortable drawing any conclusions from it, but yes the depression rate is present but I don't think it's out of line with what studies have shown for HIV patients as a whole -- it's just a fact that situational depression accompanies a life-threatening disease with it's accompanying, lamentable social stigma at a relatively high rate.  Don't confuse this with non-situational depression or other mental health issues that may or may not have developed in the patient irrespective of HIV diagnosis.

The bottom line, at least for me, is that the jury is very out on how wide spread the subject that this writer describes is, and how much it applies to post-HAART patients.  But don't let that make me stop you from wringing your hands.  Of course, it's always possible that the other shoe could drop next year and I find myself with advanced stage dementia but I guess I'll worry about that when it happens, if it happens.  What I will say is that it's articles like this that make me live in a large city with excellent university-based HIV care/research easily available instead of living somewhere that it's not.
« Last Edit: June 14, 2010, 10:35:43 AM by Miss Philicia »
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Offline WhySoUnfair

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Re: HIV and Neurological Damage
« Reply #4 on: June 14, 2010, 10:38:54 AM »
it's just a fact that situational depression accompanies a life-threatening disease with it's accompanying, lamentable social stigma at a relatively high rate.

geez, I even don't have to courage to open that link. will diabetes patients get depressed as well?

Offline Nestor

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Re: HIV and Neurological Damage
« Reply #5 on: June 14, 2010, 11:14:01 AM »
geez, I even don't have to courage to open that link. will diabetes patients get depressed as well?

Yes, absolutely.  A good friend of mine has diabetes and she's found it extremely depressing.  She deals with it, however, and carries on with her life, the same way most of us do. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Online Miss Philicia

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Re: HIV and Neurological Damage
« Reply #6 on: June 14, 2010, 11:15:37 AM »
Yes, absolutely.  A good friend of mine has diabetes and she's found it extremely depressing.  She deals with it, however, and carries on with her life, the same way most of us do. 

I doubt depression rates are the same for the two diseases, which is why I made a point of including social stigma into the equation.  I don't think it's that hard to comprehend.
"Iíve slept with enough men to know that Iím not gay"

Offline mecch

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Re: HIV and Neurological Damage
« Reply #7 on: June 14, 2010, 12:34:20 PM »
Wow Miss P that's the best summary of such articles yet and should be required reading when people try to make these blanket generalizations of doom and gloom or happy go lightlies
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Boze

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Re: HIV and Neurological Damage
« Reply #8 on: June 14, 2010, 04:54:24 PM »
I doubt depression rates are the same for the two diseases, which is why I made a point of including social stigma into the equation.  I don't think it's that hard to comprehend.

The target groups that bear heaviest burden of each disease also have different depression profiles.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline tednlou2

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Re: HIV and Neurological Damage
« Reply #9 on: June 14, 2010, 11:42:15 PM »
I think it is very true that we HIVers examine our bodies so much.  When we find anything wrong, many of us blame it on HIV.  I know I will blame a belly ache on it.  This guy could have had these issues regardless of HIV.  And, I'm sure having HIV only aggravated the situation.  It is like if an HIVer has a heart attack.  Many would want to blame HIV, but that person's fate may have been to have that heart attack regardless.

I know I catch myself writing words incorrectly--I've talked about this before.  I've also noticed when there is a graphic on TV, I sometimes will read it incorrectly.  My first instinct is to blame this on HIV.  However, maybe it just happens to most people.  And, maybe I'm just looking for these things more now.     

Offline Bucko

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Re: HIV and Neurological Damage
« Reply #10 on: June 15, 2010, 07:00:05 PM »
I can only reply anecdodally from my own experience, as I'm hardly qualified to judge the relative mental health of anyone else.

I was infected in 1984 but resisted testing (and treatment) until the arrival of PIs in 1996, and by the time I was done dithering and hand-wringing I'd already fallen quite sick (VL approaching 1,000,000, nasty case of the shingles, T-Cells hovering around 250). In addition to HAART, my first doc put me on anti-depressants (for the first time in my life) and have found them to be SOP not just for the newly diagnosed, but for PLWHA in general.

Before I was tested, and even through the earlier parts of my treatment, I was usually one of the best-adjusted people I knew: genuinely optimistic, upbeat and highly critical of those who allowed bitterness to encroach on their lives. I cannot honestly say to what degree various factors in my life have left me chronically depressed (and frequently despondent), but saying I'm not would be to deny reality.

For me and in my life, these were some of the contributing factors:

1) Guilt caused by a dual diagnosis with a partner, whom I'd accidentally infected following a broken condom in 1995;
2) The additional stresses in that relationship, including dealing with his various compulsions and addictions;
3) A diagnosis of degenerative disc disease in my cervical spine, which was discovered to be the cause of the migraines I'd suffered throughout my life and has since worsened to the point of being a chronic pain patient;
4) Ups and downs with my treatment, which have left me 45 pounds lighter than when diagnosed (and I was never fat) and one crisis where I was revived after having flatlined after a sustained fever of over 104 degrees;
5) The eventual total deterioration of my relationship, which left me bankrupt and without health insurance in a state where I knew almost nobody and had no real support network;
6) The collapse of my 25+ year career due to factors both inside and outside of my control and the stresses of finding ways to support myself by other means beginning at the age of 45 (and living with both HIV and chronic pain);
7) A largely self-inflicted sense of isolation and the near-collapse of my self-esteem.

Honestly, it's a deep hole to crawl out of, and half of the time I don't even bother anymore. But my last five years have been a long search for regaining some balance and humor into my life.
Blessed with brains, talent and gorgeous tits.

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Offline aztecan

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Re: HIV and Neurological Damage
« Reply #11 on: June 15, 2010, 07:16:28 PM »
My first instinct is to blame this on HIV.  However, maybe it just happens to most people.  And, maybe I'm just looking for these things more now.     

As I approach a landmark year with HIV, I think it is all of the above.
The symptoms the guy describes regarding hostile thoughts, forgetfulness, etc., very well could be attributed to long-term HIV infection.
It happens to me.

I think the brain fog is the most frightening thing. For those unaware of what it is, do a search. There have been many threads discussing it.

I guess we just have to do the best we can - and remember not everything is caused by HIV.


HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline leatherman

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Re: HIV and Neurological Damage
« Reply #12 on: June 15, 2010, 08:25:50 PM »
more than any neurological problems, I was more troubled reading in this man's blog that he started meds in 1994 and in 2003 was hospitalized with PCP. It seems like he must have had health or med issues to have gotten sick like that after nearly a decade on meds - and who knows how that contributed to his neurological issues.
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Offline wtfimpoz

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Re: HIV and Neurological Damage
« Reply #13 on: July 04, 2010, 01:37:35 AM »
geez, I even don't have to courage to open that link. will diabetes patients get depressed as well?

Not sure what you're getting at buddy, but I know a lot of people with diabetes, and its a pretty nasty disease.  While I'm certain HIV is worse, I don't really think its the kind of thing which should compel an overwhelming amount of optimism in its comparison.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline darkerpozz

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Re: HIV and Neurological Damage
« Reply #14 on: July 04, 2010, 09:52:04 PM »
I found the article unfortunate because though I no these things exist it is harder to hear them. I guess we all have so much to be thankful for that we don't all share the terribles of HIV.

Offline aztecan

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Re: HIV and Neurological Damage
« Reply #15 on: July 04, 2010, 11:19:00 PM »
more than any neurological problems, I was more troubled reading in this man's blog that he started meds in 1994 and in 2003 was hospitalized with PCP. It seems like he must have had health or med issues to have gotten sick like that after nearly a decade on meds - and who knows how that contributed to his neurological issues.

I've seen this happen, but usually to someone who either doesn't adhere or someone who, for some reason, has blown through the meds and has some very serious resistance issues.

Starting in 94, it is likely he was on monotherapy, or at the most, dual therapy. This can lead to all sorts of resistance issues.

Without knowing more, it would impossible to pinpoint why this man managed to develop an OI after having beem on meds for nearly a decade.

Also,it  is not impossible to develop PCP with higher CD4s, I've seen it happen. But it is unusual.

I wouldn't be surprised if the person who wrote the article has multiple problems of which only one is HIV. I surmise from his writing, the man also has some mental health issues.

That is certainly not uncommon, but it also can be a factor in adherence and taking care of oneself.

Regarding the CNS problems, as I mentioned earlier, they are seem to come with the territory for many of us.

HUGS,

Mark
« Last Edit: July 04, 2010, 11:21:36 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline eric48

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Re: HIV and Neurological Damage
« Reply #16 on: July 05, 2010, 03:54:24 PM »
SOP not just for the newly diagnosed, but for PLWHA in general.



SOP : tandard operating procedure ?
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Online Miss Philicia

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Re: HIV and Neurological Damage
« Reply #17 on: July 06, 2010, 02:02:05 AM »
more than any neurological problems, I was more troubled reading in this man's blog that he started meds in 1994 and in 2003 was hospitalized with PCP. It seems like he must have had health or med issues to have gotten sick like that after nearly a decade on meds - and who knows how that contributed to his neurological issues.

uh, no... don't you "get" the pre-HAART problems?
"Iíve slept with enough men to know that Iím not gay"

Offline leatherman

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Re: HIV and Neurological Damage
« Reply #18 on: July 06, 2010, 02:31:34 AM »
uh, no... don't you "get" the pre-HAART problems?
um. what do you mean? ??? what pre-HAART problems?
He actually claims his problems did not start until after starting on medications.
Quote
In 1994, my personality dramatically changed.

I started on HIV meds in 1994

I was just making the point that they guy seemed pretty sick - sick enough to get PCP after supposedly being on meds for nearly a decade. I would suspect that he might not have been adherent all those years which would explain him being that sick. Plus being that non-adherent would mean the HIV might have been going unchecked some of that time and also contributed to his neurological issues ie "declining cognitive capabilities"

obviously his story doesn't seem to be one of a "normal" (non bi-polar, non-depressive, non-etc) person who has remained adherent for many years and then magically developed neurological problems . . .
Quote
I started on HIV meds in 1994 and have taken most of the current antiretrovirals. In 2003, I was diagnosed with Pneumocystis Carnii Pneumonia and was hospitalized for nearly a month. .... In 2004, I began to notice that I was having a hard time concentrating and that my memory was deteriorating. ... In early 2008, after a battery of tests by an AIDS experienced neurologist at UCLA, I was diagnosed with the beginning stages of AIDS Dementia.
. . . which seems kinda like what you implied too.
I only scanned the article, but I always caution the n00bs to draw too many conclusions from those of us that were treated previous to 1996/HAART.
(though this guy was treated on HAART for the most part)
leatherman (aka mIkIE)


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Online Miss Philicia

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Re: HIV and Neurological Damage
« Reply #19 on: July 07, 2010, 11:31:06 AM »
um. what do you mean? ??? what pre-HAART problems?
He actually claims his problems did not start until after starting on medications.


Starting in 94, it is likely he was on monotherapy, or at the most, dual therapy. This can lead to all sorts of resistance issues.

xxxxxactly
"Iíve slept with enough men to know that Iím not gay"

 


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