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Author Topic: HIV Encephalopathy???  (Read 1809 times)

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Offline odyssey

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  • Posts: 767
  • One Crazy Mofo!
HIV Encephalopathy???
« on: February 06, 2009, 05:08:57 PM »
Well, I've been experiencing increased confusion along with coordination issues, a mild headache, and slightly elevated temperature (99.1 F) for the past week or two. Today, she told me that I most likely have HIV encephalopathy. Has anyone experienced this or know anything about it? I was told that there isn't really anything to be done, nor much reason for serious concern unless I develop I real fever. I'd appreciate any knowledge or experience people can share!
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline md

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  • Posts: 196
Re: HIV Encephalopathy???
« Reply #1 on: February 06, 2009, 10:12:44 PM »
"Encephalopathy" is one of those rather unhelpful medical terms which, taken out of context (and sometimes even it context) doesn't really mean very much - literally it just means something which is affecting the brain.

That having been said I am kind of surprised that someone (your doctor?) would, apparently fairly casually, have suggested that you might be suffering from it at that there was "not much reason for serious concern" since the term "HIV related encephalopathy" is usually reserved for cases in which a person is having serious cognitive problems due to the brain damage that can occur in advanced cases of HIV infection.

That having been said, I have never heard of someone with your numbers and an apparently fairly recent infection suffering from it so from that perspective I agree that there probably isn't too much to worry about, but I definitely would go back to the doctor (or whoever told you this) and ask them to explain exactly what it was that they meant and, importantly, why they didn't feel that you should be concerned about it.

I would also ask why they felt that this was HIV related. There are lots of possible reasons for confusion and/or coordination problems and just because you have HIV doesn't mean that everything that happens is either directly or indirectly related to the infection. I would be concerned by a doctor who didn't also consider and attempt to rule out all of the other possibilities.

 

Offline md

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Re: HIV Encephalopathy???
« Reply #2 on: February 06, 2009, 10:15:47 PM »
sorry - duplicate post deleted ...
« Last Edit: February 06, 2009, 10:24:32 PM by md »

Offline Robert

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  • Posts: 2,648
Re: HIV Encephalopathy???
« Reply #3 on: February 07, 2009, 12:06:02 AM »


Odyessy

I experience the same problems.  I trip over my own feet.  I'll often miss a stair or two and stumble.  TWice in the last couple of weeks I've made coffee without putting the grounds in.  ONe time, I added water enough for 1 cup.  Then I added the coffee and then I added another cup of water.  When I came back downstairs, there was coffee all over the counter.  The list goes on and on.

I noticed this forgetfullness and akwardness started soon after my bout of pneumocistis. 

It also sounds like we share the same Dr. Although I mention it everytime I see her, she shrugs it off and tells me not to worry.  In all fairness, though, she did run a battery of tests (MRI's etc) to rule out serious cognitive problems.  But I encounter these problems daily and they are serious and they only seem to get worse.

good luck.

robert
..........

Offline aztecan

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  • Posts: 5,414
  • 29 years positive, 57 years a pain in the butt
Re: HIV Encephalopathy???
« Reply #4 on: February 07, 2009, 01:26:57 PM »
Hey Odyssey,

MD gave you good advice. Sit down with that doctor and get an explanation of what he/she meant.

There are so many different things that could be going on, stress among them.

I can testify Robert is ditsy at times. So am I.

There is something we long-termers call "Brain Fog," that seems to affect many of us. It fits right in with what both you and Robert described, except it usually doesn't involve a fever.

The doctors - and medical profession in general - haven't come up with a real explanation, at least as far as I know.

Buy I do know you don't sound like someone with HIV-related encephalopathy. I have seen that and, you may rest assured, the indications are quite marked

This is also different from AIDS-related dementia, which has some similarities, but also some differences, to HIV-related encephalopathy.

Bottom line is don't panic, but get an explanation from your doc regarding what he or she meant by this diagnosis.

HUGS,

Mark

« Last Edit: February 07, 2009, 01:29:33 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline MitchMiller

  • Member
  • Posts: 482
Re: HIV Encephalopathy???
« Reply #5 on: February 07, 2009, 02:35:37 PM »
The "fever" part sounds suspicious.  I would try to do some additional research, which you are probably doing by posting here.

I had multiple brain issues within the first year of my infection.  Meds definitely helped eliminate some issues, as well as adding their own.  I had vertigo (two or three momentary cases where the world rotated 45degrees), problems verbalizing my thoughts, minor mistakes writing emails that I would never have previously made, and tinnitus. 
I have posted multiple times in the past, that I started using selegiline  (L-deprenyl - google it) before meds.  Partial, but significant, relief from the tinnitus was noticable within three days.  I've continued to take it, now going on six years.  I take 2.5mg/day in the morning, six days/week. 

A clinical study did not show improvement in subjects taking seligiline.  However, the study did show there was no progression of symptoms.  So perhaps it may offer some protective benefit... and 2.5 mg costs about 25cents/day.

I have to use my brain at my job and, although I'm definitely not nearly as sharp as I used to be, I can still manage.  At this point, I'm wary of stopping it.
« Last Edit: February 07, 2009, 02:38:01 PM by MitchMiller »

Offline odyssey

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  • Posts: 767
  • One Crazy Mofo!
Re: HIV Encephalopathy???
« Reply #6 on: February 07, 2009, 04:26:26 PM »
The doctor that I saw was my primary care physician, but she spoke with my ID doctor to get his input. This is really a pain for me, because I'm a full time student taking courses in chemistry, physics, and calculus. At this point, even speech isn't quite making sense, almost like the professors are speaking a foreign language. I will definitely be calling the doctor again on Monday. It is so frustrating for me to be unable to think clearly, as my mind has always been very important to me. I just don't feel like myself because my normally sharp, intelligent brain isn't "there" anymore. Honestly, I feel kind of like crying. School is so important to me, and I can't even read my textbooks because they don't make sense to me anymore. I appreciate everyone's responses! Hopefully my doctor will be more helpful this time around!
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline Robert

  • Member
  • Posts: 2,648
Re: HIV Encephalopathy???
« Reply #7 on: February 08, 2009, 02:19:56 AM »


  Honestly, I feel kind of like crying. School is so important to me, and I can't even read my textbooks because they don't make sense to me anymore....

odyssey.

I hope you get some answers. I really do. I'm old enough, I guess, that I can live with the frustration of learning.  I also have that problem of trying to make sense of everything I read.  It is just so hard.  Like you said, nothing makes sense.  If this was 30 years ago and I was back in school, I don't know what I would do. 

But let me add there are quite a few people here, though, still in school and not expericing this problem.  Let's see what some of them have to say.

robert
..........

Offline Ann

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  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: HIV Encephalopathy???
« Reply #8 on: February 08, 2009, 06:18:42 AM »
odyssey,

I can't help but wonder if you're not simply experiencing a severe lack of concentration due to your new diagnosis? Looking over your past posts, I see that you've been diagnosed for barely a month now and that you have good reason to believe that your infection is quite recent.

I know I certainly went through a similiar period in the first few months after my diagnosis. It was almost like a part of my brain shut down. It passed as time went on and I began to accept my diagnosis.

Simple depression and the shock of testing positive could well be what's going on with you. Something to discuss with your doctor or therapist, if you have one.

Hang in there.

Ann

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 odyssey

  • Member
  • Posts: 767
  • One Crazy Mofo!
Re: HIV Encephalopathy???
« Reply #9 on: February 08, 2009, 06:25:17 PM »
I have been talking with my therapist and I'm definitely not depressed. I feel pretty darn good emotionally actually. My psychologist, who is very experienced working with HIV positive people, also agrees that this is not an emotionally based phenomenon. I've been through a lot of stuff in my life, between having an autism spectrum disorder that wasn't properly diagnosed until I was almost 20, as well as being transsexual and having to live in the wrong body for years, so dealing with adversity is nothing new to me. I would definitely know if I was depressed, and I'm not.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: HIV Encephalopathy???
« Reply #10 on: February 08, 2009, 06:51:35 PM »
odyssey,

I hear you. I wouldn't have classed myself as depressed either - and neither would any clinician worth his/her salt.

That doesn't mean an hiv diagnosis doesn't mess with your head - and it doesn't necessarily manifest itself in an "emotional" way.

I just don't want you to focus on an organic explanation when a mechanic one will suffice - and prove to be the easier to overcome using practical solutions.

Does that make sense?

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

Offline odyssey

  • Member
  • Posts: 767
  • One Crazy Mofo!
Re: HIV Encephalopathy???
« Reply #11 on: February 09, 2009, 09:09:22 PM »
Well, I went to see the ID doc today, hoping he could help clarify this whole thing for me. He is checking my thyroid, and might have me complete some neuropsychiatric tests pending those results. But he also explained that when the immune system is trying to fight the virus, all the things it produces (white blood cells, chemicals, etc.) can affect the brain. So, apparently he didn't mean I have a progressive form of dementia or anything that is more commonly seen in later stages of HIV. My body's own defenses can be temporarily "intoxicating" my own brain. The doctor says that once my body reaches an "equalibrium" with the HIV and my numbers settle out a bit, this mental fogginess should clear up with little to no permanent damage. This has me a lot more optimistic than the general description that when looked up made me think I was gradually going to lose my mental faculties. Thanks for the feedback, and I'll keep everyone posted on my "recovery".
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

 


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