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Author Topic: My Dirty Little Secret  (Read 20872 times)

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Offline alberche

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  • a distancia del mundo incierto, saludo mi suerte
Re: My Dirty Little Secret
« Reply #50 on: October 07, 2006, 06:16:43 PM »
Hiya folks,

I am only for 5 months on meds, and I often pass thru foggy moments... but this has happenned to me almost always, even before being infected (my infection is also very recent, only 7 months ago...)

For me, this has a lot to do with stress, tiredness, sleeping bad or being sad, not motivated or a bit depressed. HIV for sure should have effects on the brain, as well as meds.

I help myself with notes and trying not to stress anymore. Words, thinkings, ideas, images will return in a certain moment. If necessary, I re-do or review things. Routines are also helpful. And simplifiying is also. I mean, trying to take out of our daily activities those things we tend to do when they are not needed or just simplifying steps when doing things.

I have also taken some help from making some space at home, taking out things I stored but not needed anymore.

And, finaly, writting helps. I mean, keeping a daily or periodical diary or something alike, writing to discuse with oneself things and thoughts.

After all, we are all a bit mad, it is just a matter of taking a look, in little detail, to people walking on streets. So, I decided not to be stressed about it.


love is blindness...  a wonderful song!

Offline Ric Wilke

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  • I joined AIDSmed.com 10/2002.
Re: My Dirty Little Secret
« Reply #51 on: October 09, 2006, 12:02:49 AM »
Dearest RAB (and everyone else),

We need to talk about this!  Obviously you are not alone.  I should say we are not alone.

Memory lapses are very common with anyone who has had an insult to the brain.  I believe that this virus attacks each of our brains.  The meds we take often times do not cross the blood brain barrier and therefore do not attack the virus that we have within our brains.

My beloved spouse, Thom, sufferred a brain aneurysm in May 2001.  He is HIV neg but still has memory problems.  I was diagnosed in Sept 2001.  I loose track of words in the middle of a sentence, words that I have used for my entire lifetime are lost.  Thom and I rely on each other for a single memory that allows us to function as a couple.  Most people don't even know that we fight this every day.

I hope that we can share with each other our travels down this life's road.  There is so much that we can share and so much support that we can give.

RAB, you are a one of a kind person.  This thread has all but ripped my heart out because of what I feel for you.  You are my brother and my dearest friend.

Take very special care and I love you, Ric

Offline grey_the_hunter

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Re: My Dirty Little Secret
« Reply #52 on: October 10, 2006, 01:32:51 PM »
Well, I think my post will be a little different - and hopefully helpful.  I can empathize with just about everyone on here, since I have had A LOT! of the same experiences.  It has been an interesting experience for me, since I have to do a significant amount of analytical and creative thinking (I do consulting and marketing type work).  There is a lot that I am required to hold in my memory - especially since I suck at writing things down and not losing the little peice of paper I wrote it on, ha ha ha... For me the work I do has been troublesome - but also a blessing (since the work MAKES me use my brain so much).

Because of what I do for work, I tend to be pretty solutions focused, and also tend to look for as much data as possible.  AND I'll ask anyone to forgive me if I end up coming off like I think I know everything, ha ha ha -- jeeze, the more I go to school the more I realize how much I DON'T know(I happen to be back in school after a long time out, and found I really love neuroscience, which is COMPLETELY different from the type of work I am doing now).  Anyway.... I'll try not to lecture, but I'm sure now that we know we aren't in this alone, some people might want some info that could possibly help a bit with the brain fog issue. 

As you probably all know the brain is amazingly complex, and pretty much every system is interconnected.  So unlike with the rest of our bodies, it can be hard to pinpoint one area/structure as a "cause" for symptoms or disorders.  With the brain, you can have two people with nearly identical symptoms who have very different things going on that cause those syptoms....  So what does this have to do with brain fog?

There are a few things (one or a combination) that can be contributing to it - and some of these things we can do something about:
HIV Meds - many of the anti-HIV meds do not have good penetration through the blood brain barrier.  This means they are not as able to effect the reservoirs of the virus in our brains.  You can talk to your doctor and ask if there are other med options for you that could help (BTW Combivir/AZT and Sustiva BOTH have excellent penetration into the brain).  As a general rule if the medication is more lipid soluble (it gets absorbed by fats) it is better able to penetrate the blood brain barrier, and therefor effect the HIV that is hiding out in the brain.

Stress - I don't know about you - but having HIV and worrying about health, relationships, work, etc Stresses me the heck out.  Unfortunately one of the body's responces to stress is to release a hormone called Cortisol.  Without getting into it, this isn't necessarily a bad thing unless you are under stress for long periods of time and your cortisol levels remain high.  Constant exposure to the stress hormone, cortisol, damages cells in the hypocampus (a structure in the brain).  The hipocampus is critical for the formation of new memories - and for the reconstruction of old memories.  Therefore, damage to that area can make it harder for you to remember something form the past - AND to turn short-term memory into long-term memory.  I found that Kung Fu helps me a lot with my stress levels (physical exercise of any kind is good).  I have friends that do yoga instead - but I'm to hyper to sit and be quiet for more than 5 minutes at a time, LOL.  Anyway - any damage to that area of the brain doesn't mean all hope is lost.  There is clear evidence that as long as the hipocampus is partially intact, your brain can adapt - and cortisol isn't necessarily going to completely destroy that structure.  Just do what you can to get rid of some of your stress, and if that is part of the issue, then your brain Will start getting back on track....

Fatigue - I think this is self-explanatory.  If you aren't sleeping well, or are constantly woken up, then you don't get quality rest and your brain doesn't "re-charge" (basically, your brain cells don't get the opportunity to effectively remove toxins, waste, and other neurotransmitters that lead to fatigue if they are "awake" and in use).  Stress can interupt your sleep.  Also - sleeping pills often do not allow you to get the kind of deep sleep that your brain needs.  Personally, I think it is better to try meditation, nutrition, supplements, exercise or something else to help get the Quality sleep I need.

Inflammation - Our brain's are incredibly delicate.  Inflammation, while being a defense that is meant to isolate the damage in one area, can be really bad over the long-term.  Unfortunately, among the many things HIV can do in our brains, is cause wide spread and pretty constant inflammation.  I agree that any anti-inflammatory can help with that.  Just talk to your doctor about any Gastro-intestinal risks (like ulcers) before you start daily dosing them.  Another benefit of anti-inflammatories (like aspirin, aleve, tylenol, etc) is that they can potentially help with the inflammation in our guts where a large percentage of the HIV is hiding out and help our bodies start producing more immune cells there (very important since our mucosal system in the gut is a BIG part of our immune defences).

Nutrition - As far as I know, no one has figured out exactly why we tend to have nutritional deficiencies (personally, I have the feeling it Does have to do with HIV hiding out in our intestines, and maybe also because of some of the drugs).  Nutrition is critically important for all of us.  One of the common vitamins poz people may be short on are the B complexes (especially B-12) which are VERY important for mental health - in fact we use up a lot of B vitamins when we deal with stress.  I usually take (don't laugh) a children's vitamin once a day, since I don't wanna OD on one kind of vitamin and cause other problems.  I save my major vitamins (that have higher % of the RDA) for when I am having a particularly hard day.  That seems to really work for me.  I also take an Omega-3 fatty acid supplement (these can be fish oil - OR flax seed oil).  Omega-3 deficiency has been linked to depression among other neurological problems.

A couple of people mentioned stimulating games.  For what it is worth, I agree that ANY stimulation is way better than none. I think because my work challenges me on a daily basis to be creative, be analytical and find solutions - I have more good days than bad.  That's in part because even though we have literally billions of brain cells, it is the connections between them that are most important (this is one reason why stroke victims can recover a portion of the previously lost functionality - because there brain makes new connections to replace the function of lost connections due to cell death).  I think the more we challenge ourselves (as long as we don't get frustrated, anxious and discouraged) the better we can do in coping and alleviating the fogginess in our thinking and memory. 

OK - I'm done with my lecture :P -- and I certainly hope I didn't offend anyone - AND more importantly that maybe a few more of us feel we have options and strategies to maybe get our minds back.  I never liked the idea that this virus Hijacked my immune system (and with it many of my goals and dreams) but I  will be Damned if I am going to let it take over my brain without one heck of a Fight!

[u/b]Good luck to you all!!!! and much love :)[b/u]
« Last Edit: October 10, 2006, 01:44:52 PM by grey_the_hunter »

Offline RAB

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  • Joined March 2003
Re: My Dirty Little Secret
« Reply #53 on: October 10, 2006, 08:44:29 PM »
Hello Grey T H:

First let me say;  Welcome to the forums!   :)

Thank you for taking the time and expressing with such depth your suggestions and observations.  I found them not only interesting but helpful.

You said:

I certainly hope I didn't offend anyone - AND more importantly that maybe a few more of us feel we have options and strategies to maybe get our minds back.  I never liked the idea that this virus Hijacked my immune system (and with it many of my goals and dreams) but I  will be Damned if I am going to let it take over my brain without one heck of a Fight!

You certainly haven't offended me, in fact I feel like I owe you lunch!   ;)  I appreciate how thoughtful and detailed you've been, like you I don't like how HIV has impacted my immune system and I too don't want to cede anything more than I have to without a fight.  I'll try anything I can to repel the impact I've talked about here. 

Thanks again.


Offline grey_the_hunter

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Re: My Dirty Little Secret
« Reply #54 on: October 11, 2006, 12:03:49 PM »
Awwwwwwwwwww.... Thanks!    :D  I am totally flattered.

and for the record I rarely turn down a free lunch, ha ha ha ha ha ha ha

But more importantly, I'm glad you found the post useful.  I personally have a really awesome Dr (who also happens to be one of the formost researchers on metabolic issues associated w/ HIV) but I found even as good as she is, she can't stay on top of all of the new news.  So I figure, this is my illness, so I might as well learn as much as I can.  It can be tough - sometimes depressing - but I also find it sometimes invigorating (especially on those days I am feeling a little lost and hopeless).

Anyway - I'm rambling (which I tend to do a lot  :P)

OH - and before i forget -- Thanks for the welcome  ;D

Offline SouthSam7

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Re: My Dirty Little Secret
« Reply #55 on: October 11, 2006, 03:26:37 PM »
Gosh, I see that I'm not alone!  I'm awaiting my testosterone level test but I have a feeling she'll say it is normal.  It's interesting that I am aware that I don't feel as "intelligent" as I used to be.  That's a strange feeling.

I've missed you all! 


Sam in 'bama

Offline Catman

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  • Blessed with more than 9 lives! + since 1986
    • Who is the Catman?
Re: My Dirty Little Secret
« Reply #56 on: October 11, 2006, 04:51:31 PM »
It happened to me today. I was in a company information booth and while I was in the middle of some sentences "poof" I would totally forget what I was saying. I would either improvise or begin a new sentence. It was very frustrating because I like explaining things to people or just being in daily conversations in the workplace. I am also forgeting the names of people who work with me. This is making me shy out of job postings because I don't want to feel like a jerk in the middle of an interview. I don't relate it to old age because I'm not that old. When it happens, I try to calm down and just reorganize my thoughts. It doesn't always work but it's worth the try...

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline jmil51

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Re: My Dirty Little Secret
« Reply #57 on: October 11, 2006, 08:17:18 PM »
RAB - Since a lot of people are putting in their two cents worth, I'll add my $.01/2 in..  I started noticing the same thing you are describing back in 2001.  I quit reading everything, even the daily newspaper comics because nothing registered.. I attempted to balance my checkbook, but after only a few minutes gave up cause I couldn't even add 2 + 2. 

I was diagnosed in 1991 and immediately started on the meds. So I don't think I can blame my "lame Brain" on them.  What I did finally realize is that as my brain quit functioning, my stress was increasing.  I went on disability retirement late 2000.  Broke up with my partner a few months later.. Sold my house and moved to a new area.  I also started having problems with avascular necrosis..In other words my life was going down the hole.

The lame brain continued for several years. My doctor even diagnosed "DEMENTIA".  I was taking anti depressant and anti anxiety medications all through this time period.  Finally in 2003, I realized I was slowly regaining some of my mental capacity back.  This coincided with my health and social issues slowly starting to improve.

I have now stopped taking all anxiety and depression medications and have regained most of my mental functions.  I attribute the loss of my brain capacity to the stress, depression and anxiety that I was experiencing at the time.  I do know my Doctors diagnosis of DEMENTIA was wrong based on what I have read about dementia since. You just don't recover the grey matter if you have dementia..

I still have my "senior moments" where I can't remember something, but anyone 55 years of age has those moments as well.

Don't overlook anxiety and depression as the cause of your lame brain.  Good luck.


counts now holding at 13500 and viral load undet for two years.

Offline Queen Tokelove

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  • Smokey the Smurf
Re: My Dirty Little Secret
« Reply #58 on: October 11, 2006, 08:46:20 PM »
Wow! I see a lot of people are affected by this. I must put myself in that class as well. I did not know this could happen from hiv. I would laugh and blame it on the weed. I have been smoking for over 15+ yrs, started out being recreational but then tuned medicinal for me because I did not eat. My doctor knows I smoke weed, had tried to give me Marinol, but all that did was make me dizzy. I know for smoking for as long as I have that I have indeed burned some brain cells but is by no means a burnout. A pothead yes, a burn out no. I do things to stimulate my mind. My favorite thing is playing the playstation and playing Resident Evil, for those of you who are gamers, there are enough puzzles in that game to keep you thinking, I also play it when I am stressed. I also like to play Mah Jong, that seems to help me too. But since reading these fog posts, I will definitely have more questions for my doctor when I see him next.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Darren

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  • Posts: 2
  • dig it!
Re: My Dirty Little Secret
« Reply #59 on: October 17, 2006, 03:12:39 PM »
ya know, i had this sneaky feeling about this, i thouhgt it was society puttiong too much info into my
brainstream, but reading this, maybe i will ask my Dr, as i thouhgt it could be early alzheimers, as i am only in my 40's.  This is good to know about, thank you for posting this!
:Darren :)

Offline Henritx

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Re: My Dirty Little Secret
« Reply #60 on: December 02, 2007, 09:59:08 PM »
OMG  Am I glad I have seen this 'old' thread.
Indeed I have noticed many of these symptoms.
Though I have always been bad at restaurants names and people names
I could tell what I had to eat, the decor, or someones job.

So I got HIV and it worsened. or was it age?? I am 48 now. 45 when I dx'd.
Now I think it was 1) STRESS, 2) stress, 3) maybe drugs.. esp anti anxiety ones.
Ive felt dumbed down ever since I used them.. but am much better with than
without...for now.

And now I know that stess physically impairs the brainwhich was news to me.
I didnt realize extended stress could actually hurt you physiologically.

From now on I am taking B complex vitamins, doing vigorous yoga daily
and continuing my pet learning projects of satisfying my curiousity of the world.
That stretches my brain..... hopefully.

Thanks for eveyone's previous posts. The knowledge has made me much more comfortable
if not outright enthused. Its NOT just ME!!!!!!!!!

PS   If you read this post..please leave a message if youve got similar experience.

Work like you dont need the money
Dance  like no one is watching
Love like youve never been hurt

Offline dgr20002

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Re: My Dirty Little Secret
« Reply #61 on: December 02, 2007, 11:15:30 PM »
I just found this thread too, since it was revived. I have terrible short term memory. I sometimes forget where I parked the car the night before. My bigger problem is that my mouth won't keep up with my brain. I know what I want to say but mix the words and stutter. It happens most at work when a situation arises that needs a quick answer. My doctor says I am getting old (at 46).

I also can not focus on tasks. For instance I think emptying the dishwasher is such a chore I need to do it in steps. Sometimes it takes a whole day. I wouldn't say the house is a mess, but I used to be very neat and tidy and now there is stuff everywhere and I don't care. I live alone so it is no big deal I guess.

I have been poz more than 20 years and on and off meds all that time.  Today I take Lexapro, Reyataz and Epzicom. I do feel like things are just harder to do and in general have to make lists for everything.

Thanks for talking about this. I read 60 posts and felt for a long time it was just me.


Offline allopathicholistic

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Re: My Dirty Little Secret
« Reply #62 on: December 02, 2007, 11:38:56 PM »
My doctor says I am getting old (at 46).

Well your doctor must be living in the past because 46 is middle age. Get this, I toasted bread, removed the crusts (cuz they're bitter imo) and placed the crusts in a bowl for later disposal. Instead of tossing the crusts I stuck the bowl under running water including the crusts. I never usedto do weird stuff like that.

Offline LTSurviver

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  • LTS since 1987. LTNP until 2008.
Re: My Dirty Little Secret
« Reply #63 on: February 15, 2009, 04:54:19 PM »
I'm bumping this old thread to say another "me too" here.

For most of the 22 years I've been poz I have had SEVERE trouble with names and nouns.  Also memory, especially short term.

Oh, and focus.  Sometimes it's like my mind has mud in it.

I've just started the meds 3 months ago and I see no real change in this.

Offline Jeffreyj

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Re: My Dirty Little Secret
« Reply #64 on: February 15, 2009, 11:59:48 PM »
Maybe we should just name it. Then we can accept it and we will all know what it is by it's new name!

Exciting I think. Let the name contest begin!

I like Moff's BF= Brain Fog.
Positive since 1985

Offline Being Swiss

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Re: My Dirty Little Secret
« Reply #65 on: February 16, 2009, 02:28:16 AM »
I've tried to read  your posts carefully. Yet this may already have been mentioned: So-called "subclinical neurological problems" can already occur at an early stage. - I probably caught the virus in 1981, and became  victim of a writer's block in 1983 (it lasted until 1993).  And I had always been a very productive and reliable student!

About a fortnight after having started with AZT the problem literally disappeared, and I felt an urge to write long and well formulated letters (in German, of course  8)).  I've enjoyed many meds since then , and the "fog" came back after some years. I have my daily and weekly plans, which my mum (a rather impulsive person) doesn't like very much. But they are necessary for me. - I even find it difficult to concentrate on a movie; that's why I spend a lot of time in forums writing unnecessary posts.

The whole problem should be discussed. Research is necessary, though difficult. It means that one's quality of life can severely suffer.

The best-looking Swiss gay my mum could produce. She was rather in a hurry...

Offline Winiroo

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Re: My Dirty Little Secret
« Reply #66 on: February 16, 2009, 03:31:09 PM »
I used to say its cause I have "HIV in the brain." 

brain farts, whatever you want to call it.

Sometime around 1993 I had a real tough time with this. I would wander around the house trying to remember what I had gotten up to do. I would go in to the bathroom and stare at the junk on the counter trying to remember what I was going to pick up off that counter and why.
Couldn't remember if I ate. What I ate. stuff like that. I got seriously thin and way whacked out.

I honestly could not tell you what snapped me out of it. I gained weight eventually. More than enough actually.  :-\
I do occasionally have a brain fart or trouble remembering things. But it is nothing like the experience I had in 93.

Offline anniebc

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Re: My Dirty Little Secret
« Reply #67 on: February 16, 2009, 04:54:39 PM »
See!!! this is why "Dirty little secrets" should stay secret..even after 3 years secrets can come back and bite you in the backside....or did you forget about that RAB.. ;) ;D

Jan :-*
Never knock on deaths door..ring the bell and run..he really hates that.

Offline BM

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Re: My Dirty Little Secret
« Reply #68 on: February 16, 2009, 05:21:41 PM »
Another "me too" post.

I've been positive, probably since the end of 2004. Since then I've noticed all of the following at various times and to varying degrees:

1. Struggling to remember words. At a job interview I started a sentence three times and could not remember the (common) word I wanted to use. I didn't get the job!
2. When searching for something, say a book, I could be looking directly at it but am unable to see it; that is, my brain doesn't make the connection that I have found the book I am looking for.
3. Inability to express myself fully in conversation (much to my frustration!).
4. Getting tongue-tied.
5. 'Zoning out' in conversations.

Offline LTSurviver

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Re: My Dirty Little Secret
« Reply #69 on: February 16, 2009, 05:48:58 PM »

Yep.  It kills me that I can fully grasp a concept, but cannot vocalize it.  It's extremely hard when you lose words... especially nouns.  Everything has become a "doohickey" "whatchamacallit" and "thingy." 

Zoning out is another problem.  It's like a social disconnect.  I've even walked away from people who were talking to me not meaning to be rude at all, but simply because I lost all focus.

I've also taken to interrupting people so I can get a thought out while it's still there.  It's not that I mean to be rude... but if I wait, it'll be gone.

The funniest thing?  People tend to think I'm rude, arrogant and inconsiderate because of these things... but it's not like that at all.

Offline Steinway

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Re: My Dirty Little Secret
« Reply #70 on: February 16, 2009, 07:28:17 PM »
Hey man, I know what you are talking about.  I used to feel this way all of the time,  but it's not just us.  My sister that has undergone chemo, radiation, and other forms of treatments for cancer is spacey now.  I'm not sure if it's the disease or the treatments, but I do know that I no longer feel that way.  I used to sort of feel down about it.  Like I couldn't remember what day it was even.  I felt it was HIV of the brain too.  If I thought about it enough I even thought I could feel it.  The power of thought I think. 
   Well,  I have made some changes in my life over the past year and have noticed a big difference in the mental side of things.  I am on Atripla.  I don't know if that fogs the brain or not, but one thing I do is make sure i get enough sleep every night, more oxygen helps the brain.  Less sleep, less oxygen and less healing every night.  Another thing I do is work out at least twice a week.  Nothing too major, but enough to lose about a pound a week, or a pound every other week.  More of a maintenance really, but in five months I have lost 19 pounds.  Not the fastest weight loss, but it's not something that I am hitting as hard as I could and I'm okay with that.  I've also changed my diet quite a bit.  I no longer drink pop.  I haven't had an alcoholic beverage since New Year's, but even before that  it was really only maybe one glass of something a week or every other week.  I noticed that alcohol, even the stuff that's supposed to be good for you (red wine), it just has a negative affect on my body.  I think that is do to combining it with Atripla.  So now I simply drink water, and organic juices in moderation.
   I have cut down drastically on fast foods, pizza, big meals, etc.   As a result of all of this I think my brain is a bit younger and more alive.  I also challenge my brain more with memory games, reading, anything that would stimulate the brain.  Less time watching tv, less time on the internet. 
   I have heard that Alpha Lapoic Acid mixed with Acetyl L-Carnitine is a good mix for anyone suffering from memory loss or aging issues.  I know cancer and hiv+ people do experience some early signs of aging.  I would do some research before adding any type of vitamin or herb to your intake, and also as they say, consult your doctor and pharmacist.  Having many opinions will help you make your own judgements.   I tend to do a lot of reading on issues like this when I am concerned for myself or others I care about.  You've got to love the internet. 
   I am wondering if there is a thread on this site under nutrition, Mental Health, or maybe some of the long term survivors have posted some advice or experiences.
   Best of luck to you,  Steinway
It is with passion, courage of conviction, and strong sense of self that we take our next steps into the world. Remembering that first impressions are not always correct. You must always have faith in people, and most importantly, you must always have faith in yourself.
~E. Woods


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