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Author Topic: LTS and "brain fog."  (Read 3308 times)

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Offline aztecan

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  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
LTS and "brain fog."
« on: February 26, 2013, 10:10:34 AM »
I watched a webinar on studies done on aging and HIV yesterday.

No earth-shattering news, but the presenter, who was from Johns Hopkins, said the issues of HAND (HIV Associated Neurocognitive Disorder) have changed since the early years of the pandemic.

Again, no surprise there. People exhibited signs of dementia akin to late-stage Alzheimer's syndrome in the early days.

Today, the changes are more subtle, may or may not progress depending on the individual, and in some cases, it seems to improve.

The bottom line in all of this is each of us should keep an eye on this for our own peace of mind, or should that be piece of mind?  ;)

Among the indicators that tended to be found with people experiencing HAND were low CD4 counts. Ongoing low CD4s and having a very low CD4 nadir appeared to go hand-in-hand with HAND. (Ouch, for a moment I thought I was Seth MacFarlane.)

This is just another good reason to be adherent with our meds, and if someone isn't on meds as yet, encourage them to pursue treatment before their CD4s suffer too much.

But CD4s are not the only culprit and, from what was said in the webinar, a combination of things could be involved as well.

Controlling depression, getting good nutrition, exercising the little grey cells, as Poirot used to say, and staying socially engaged seemed to play a role in helping people either adapt or improve their cognitive functions.

The most encouraging thing I heard was that, while most of us will experience some level of this, and it does seem to have a greater affect those of us who have passed the 50-year mark, it is not the AIDS dementia of old.

In fact, many people, it was stated in the webinar, experience some degree of this but never get worse. They just sorta stay dottie.

I can live with that. Hmmm, maybe I already am.  :o

HUGS,

Mark
« Last Edit: February 26, 2013, 10:12:52 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: LTS and "brain fog."
« Reply #1 on: February 26, 2013, 10:20:16 AM »
does seem to have a greater affect those of us who have passed the 50-year mark, it is not the AIDS dementia of old.

In fact, many people, it was stated in the webinar, experience some degree of this but never get worse. They just sorta stay dottie.

I can live with that. Hmmm, maybe I already am.  :o

HUGS,

Mark

Mark Thanks for that info  :D

I've been dottie for yrs. seems to work in my favor tho.  ;D

I just have to remember to turn on my phone, PC, and be more socially engaged, I tend to FAIL at doing this with my dottie self more often than not  :-[

and as we all know THIS isn't the way to do things  :(

HUGS

DEN  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline mitch777

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  • Posts: 3,584
Re: LTS and "brain fog."
« Reply #2 on: February 26, 2013, 01:04:15 PM »
Guess I would be dottie #3. :)

Just had a neuropsych test last week. Find out the results next Monday.
The neuropsychologist said I would probaly finish the test by 3:45.
I didn't leave the office until 5. ???
Know I did pretty bad in some of the memory testing.

Mark,
Did they mention the Johns Hopkins study about the Sustiva connection to HANDS?

My brain fog has been getting pretty bad during the past 5 years or so and is one reason that I am about to change meds from Atripla to Truvada/Isentress.
Maybe it will improve or at least prevent further dottiness? :-\
Maybe I am stuck with remaining dottie.
We shall see...
 :)

m.
32 years hiv+ (oct. 2013) with a curtsy.

Offline aztecan

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  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: LTS and "brain fog."
« Reply #3 on: February 27, 2013, 01:16:31 AM »
Hey Mitch,

Yes, they did bring up the problem of pharmacological complications adding to, or perhaps even inducing HAND symptoms.

The webinar was about 40 minutes, and he covered a lot of stuff. But he was specifically asked about the Sustiva connection. He, and I need to go back and look up his name, said he believes there is a connection in many cases, and it was something doctors should watch out for.

HUGS,

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

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: LTS and "brain fog."
« Reply #4 on: February 27, 2013, 07:07:02 PM »

The webinar was about 40 minutes, and he covered a lot of stuff. But he was specifically asked about the Sustiva connection. He, and I need to go back and look up his name, said he believes there is a connection in many cases, and it was something doctors should watch out for.

HUGS,

Mark

Oh Great, I took Sustiva form 98 to 2003  :-[
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline mitch777

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  • Posts: 3,584
Re: LTS and "brain fog."
« Reply #5 on: February 27, 2013, 07:10:50 PM »
Oh Great, I took Sustiva form 98 to 2003  :-[
don't feel too bad...
98 or 99 to 2013 for me. :o
32 years hiv+ (oct. 2013) with a curtsy.

Online Miss Philicia

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  • celebrity poster, faker & poser
Re: LTS and "brain fog."
« Reply #6 on: February 27, 2013, 07:15:04 PM »
I was only on sustiva for a couple of months ;)
"Iíve slept with enough men to know that Iím not gay"

Online Jeff G

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  • How am I doing Beren ?
Re: LTS and "brain fog."
« Reply #7 on: February 27, 2013, 07:17:57 PM »
I have been on it since it was sustiva and brand new so I'm foggyest .

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: LTS and "brain fog."
« Reply #8 on: February 27, 2013, 07:21:52 PM »
I was only on sustiva for a couple of months ;)

Well, that would explain why you don't have brain damage like the rest of us do  :-[

consider yourself lucky as your so lucid and have such a higher brain function

maybe it's the part of the country you grew up in I suppose  ::)

HUGS

DEN :-)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Online Miss Philicia

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  • celebrity poster, faker & poser
Re: LTS and "brain fog."
« Reply #9 on: February 27, 2013, 07:23:31 PM »
You don't know real brain fog until you have done a lot of klonopin.
"Iíve slept with enough men to know that Iím not gay"

Offline wolfter

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  • Posts: 4,637
Re: LTS and "brain fog."
« Reply #10 on: February 27, 2013, 08:11:39 PM »
One of my first threads here was about my "brain fade" issues.  I'm sure it was the Sustive after reading and researching.  I've regained a lot of cognitive ability, but nowhere near what it was.

I now commonly refer to it as zoning out as I can sit and watch a program and have no idea what it was about.

But I guess it's still better than not taking what drugs were available?

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline mitch777

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Re: LTS and "brain fog."
« Reply #11 on: February 27, 2013, 08:21:42 PM »
One of my first threads here was about my "brain fade" issues.  I'm sure it was the Sustive after reading and researching.  I've regained a lot of cognitive ability, but nowhere near what it was.

I now commonly refer to it as zoning out as I can sit and watch a program and have no idea what it was about.

But I guess it's still better than not taking what drugs were available?

Wolfie
yes... and the fact that us LTS's have been guinea pigs for decades.
hey, we are still here in any case. ;)
32 years hiv+ (oct. 2013) with a curtsy.

Offline denb45

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  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: LTS and "brain fog."
« Reply #12 on: February 27, 2013, 08:22:55 PM »


I now commonly refer to it as zoning out as I can sit and watch a program and have no idea what it was about.

Wolfie

Yeah I do that a lot now, zone-out, Bob hates it when I check out on him like that :-[

he says "hello, hello, I'm talking to you Dennis, can you hear me"

come back, come back to me  ::)

HUGS

DEN  :D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Solo_LTSurvivor

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  • Twerk Baby Twerk
Re: LTS and "brain fog."
« Reply #13 on: February 27, 2013, 08:44:02 PM »
You don't know real brain fog until you have done a lot of klonopin.

Isn't that known as going into a K-hole  :o
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline BT65

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  • Member
  • Posts: 9,975
Re: LTS and "brain fog."
« Reply #14 on: March 01, 2013, 06:40:32 AM »
Cognitive issues were covered in the class I just took, and when it came to Alzheimer's, it did say one of the most important things in attempting to thwart it was an active social life.  Don't know what the connection is.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline J.R.E.

  • Member
  • Posts: 7,214
  • Joined Dec-2003 Living positive, since 1985.
Re: LTS and "brain fog."
« Reply #15 on: March 01, 2013, 05:27:38 PM »
Yeah I do that a lot now, zone-out, Bob hates it when I check out on him like that :-[

he says "hello, hello, I'm talking to you Dennis, can you hear me"


DEN  :D

Same thing here Den !  I zone out on Ed, and he's like " Hello, are you home ?"  :-\

But speaking of brains and brain fog, and everything else that we're dealing with, The following article came through yesterday on my email from Medical News Today :


http://www.medicalnewstoday.com/releases/256924.php


AIDS Impairs The Ability To Recognize Emotions In Others
Main Category: HIV / AIDS
Also Included In: Psychology / Psychiatry
Article Date: 27 Feb 2013 - 1:00 PST


AIDS Impairs The Ability To Recognize Emotions In Others

People with HIV are less able to recognise facial emotion than non-infected people finds a study published in the launch edition of BioMed Central's open access journal BMC Psychology. Reduction in their ability to recognise fear in others is linked to a similar loss in immediate recall, while those with a lower general neurocognitive performance also had a reduced ability to recognise happiness.

The mechanism behind recognition of facial emotion is complex, involving many different areas of the brain, including the frontostriatal pathway and amygdala. The frontostriatal pathway is essential for learning and behavioural adaption, while the amygdale is involved in memory and emotion. The loss of this ability can be debilitating, impacting daily life and personal interactions.

Comparing people with HIV to a control group without HIV, researchers from the Catholic University of the Sacred Heart in Rome discovered that from the six basic expressions of emotion (disgust, anger, fear, happiness, surprise, sadness) that fear is the most difficult emotion to recognise. People with HIV were less accurate in identifying fearful expressions than the controls and also tended to have difficulties in immediate recall of words indicating a link between the two.

People with a higher number of AIDS-related events, such as pneumonia, Kaposi's sarcoma, or tuberculosis, and people with neurocognitive problems in memory, attention and decision making, language and speed of mental processing, were less able to recognise happiness in others.

Dr Eleonora Baldonero, who led the study commented, "The severity of HIV-associated neurocognitive disorders has been significantly reduced thanks to combination antiretroviral therapy. Nevertheless our research highlights a link between cognition and facial recognition and that AIDS-related events affect both. Understanding this on a individual level can help the long-term personal management of HIV."


Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Dar58

  • Member
  • Posts: 5
Re: LTS and "brain fog."
« Reply #16 on: March 14, 2013, 10:50:14 AM »
I had friends that took sustiva and two of them had to stop because the cognitive problems scared the hell out of them. Another called me when he started taking it and made no sense, so I refused to take that. I live alone and cannot take a chance on not knowing what I'm doing, besides the fact that I can't stand anything messing with my head. A few years back my ID doc prescribed another one in that class of drugs, I think it was viramune, I got in the car and drove the 11 miles to the store and it seemed like everything was racing by me and I was only going 50mph. The same thing happened in the store, the isles seemed to be whizzing by me. I talked myself calm and made it home, then called the doc and said "I'm not taking this!" I don't know how anyone can handle that. My HIV seems to have a knack for mutating around the meds despite me being dilligent about taking them, so my options are down to almost nothing now, I'm on Isentriss,raltegrivir (that I think makes me foggy) and truvada, I tried Fuzeon, but it near killed me literally. This combo the passed 2 years has gotten the virus undet and my CD4s for the first time since 2000 over 300, but last week I learned viral load is at 1800 again and CD4s dropped slightly. I'm hoping it is because I got sick in Jan and my white count jumped up, maybe brought out the resting infected Cd4s and hopefully the meds will knock it back down. I can hope anyway lol. Sorry I started to ramble lol. Wait what were we talking about? No I don't have brain fog lmao

Offline Mishma

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  • Posts: 190
    • Marquis de Vauban
Re: LTS and "brain fog."
« Reply #17 on: March 15, 2013, 07:35:12 PM »
Anhedonia is a common diagnosis in our group, so empathizing with other folks isn't hard to understand. It seems I really seeded my CNS early (nadir CD4 12) as I've had brain fog since the beginning of my infection.

I've been stupid since birth, which really complicates the picture.
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

 


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