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Author Topic: vision problems - CMV Retinitis maybe?  (Read 3253 times)

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Offline Strayboy74

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vision problems - CMV Retinitis maybe?
« on: December 08, 2011, 06:58:47 PM »
I'm currently taking Atripla, and have been for almost a year.  I still have some CNS issues after taking it - but usually sleep through them.  Lately, I've noticed that colors have become exceptionally vibrant - specifically greens and reds - and I have problems with my vision when reading - almost like I'm having an ocular migrane.  Sometimes when I look at words, I cannot make out some of the letters when I look directly at them - but can see them indirectly.

I've been looking online - and have an appointment scheduled with my doctor - but i don't know if this even remotely sounds like CMV retinitis - or perhaps a cholesterol issue.  I'm concerned, and was wondering if anyone else has had experiences like this.

-joseph

Offline J.R.E.

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Re: vision problems - CMV Retinitis maybe?
« Reply #1 on: December 08, 2011, 07:07:03 PM »
Joe,


When is the last time, you had a thorough eye exam?


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 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #2 on: December 08, 2011, 07:11:03 PM »
I've never had vision problems.

Offline J.R.E.

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Re: vision problems - CMV Retinitis maybe?
« Reply #3 on: December 08, 2011, 07:15:19 PM »
I've never had vision problems.

But now that you are having problems, I would suggest a complete eye exam.


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 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline J.R.E.

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Re: vision problems - CMV Retinitis maybe?
« Reply #4 on: December 08, 2011, 07:22:35 PM »
Joe,

With the symptoms your describing, it would be very wise to get an eye exam.  An ophthalmologist, can look at you retina end optic nerve, to rule out any pathology.

It could be any number of things, so you really need an evaluation.


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 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #5 on: December 08, 2011, 07:44:08 PM »
I sent an email of symptoms  to my nurse practitioner today, and asked her how I should proceed.  I just haven't gotten a response... waiting is not my forte.

Offline J.R.E.

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Re: vision problems - CMV Retinitis maybe?
« Reply #6 on: December 08, 2011, 09:23:14 PM »
... waiting is not my forte.


I hear ya,...  Keep us updated when you get a response from the nurse.


Take care-----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 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline aztecan

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Re: vision problems - CMV Retinitis maybe?
« Reply #7 on: December 08, 2011, 09:24:02 PM »
Hey Joe,

People who are positive should have regular eye exams, even if they don't think there is a problem.

People more than 50 also fall into this category, which makes it an imperative for me, because I am both.

Do you see floaters (shapes that float in and out of your field of vision)?

Let us know what your health care provider says.

HUGS,

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

Offline wolfter

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Re: vision problems - CMV Retinitis maybe?
« Reply #8 on: December 09, 2011, 05:20:27 AM »
From personal experience, I would recommend immediately consulting with an ophthalmologist.  I had an underlying OI that manifested itself with gradual vision loss.  By the time it was diagnosed, I was only able to see shadows and was quite terrified.  It was also my consultations with her that led to the discovery of a mass on my optic nerve. 

Or it could be nothing at all.  Better to know for sure.

Wolfie
productivity breeds content

Offline newt

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Re: vision problems - CMV Retinitis maybe?
« Reply #9 on: December 09, 2011, 06:39:14 AM »
CMV retinitis generally occurs at very low CD4 counts, and the symptoms you describe are not typical of CMV retinitis. But something is going on eh? so to the ophthalmologist I guess. Or perhaps as a start a general practictioner.

- matt
"The object is to be a well patient, not a good patient"

Offline seriously

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Re: vision problems - CMV Retinitis maybe?
« Reply #10 on: December 09, 2011, 08:42:44 PM »
Losing my vision was the only thing that got me to the Dr (which lead to my eventual HIV DX)-- I had convinced myself that I had CMV retinitis, turns out it was "just" optic neuritis caused by syphilis.

It started with something similar to what you describe... where sometimes I could stare right at something and not "see" it but in the periphery of my vision I could.   Could be a million things, go see an eye doc :)


Infected 7/25/03
In denial until 12/1/10
12/7/10 CD4 160 VL 456k
12/18/10 Started Isentress/Truvada
...
12/12/13 CD4 456 VL <20

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #11 on: December 10, 2011, 04:43:30 AM »
turns out it was "just" optic neuritis caused by syphilis.

That sounds pretty fuckin' scary. :(

I emailed my NP, and it's time for my lab-work anyway, so I'm gonna ask for a syphilis test while I'm there.  My NP called me back, but I was sleeping (I work nights).  I'd call her in the morning, but she's not going to be there. 

It's hard to explain... only to say that I can look at a short word of five letters or so, and I can't see some of the letters that I look directly at.  It's pretty scary, and has been a problem at work tonight, even.

Thanks, guys!  I'll let you know, when I find out more.

-joseph

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #12 on: January 16, 2012, 04:48:56 AM »
My doctor is sending me to the ophthalmologist, I've got an appointment for Tuesday morning.  Still having vision problems, although good news on my VL, CD4s and my Triglycerides.  Cholesterol still sucks, though.

More as soon as I find out.

-joseph

Oh, and NEGATORY on the syphilis. 

Offline J.R.E.

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Re: vision problems - CMV Retinitis maybe?
« Reply #13 on: January 16, 2012, 07:32:51 AM »
My doctor is sending me to the ophthalmologist, I've got an appointment for Tuesday morning.
More as soon as I find out.

-joseph

Oh, and NEGATORY on the syphilis.


Sounds good.  Let us know how the exam goes.  You may want someone to go with you, ( If your driving) as you will most likely be dilated.


Good luck--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 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline SANJUANDUDE

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Re: vision problems - CMV Retinitis maybe?
« Reply #14 on: January 18, 2012, 01:24:59 PM »
Usually CMV may develop when the cd-4 count is below 100.  Well below 100, my id doctor informed me, below 50.  With a decent t-cell count and undetectable viral load, it is unlikely, highly unlikely that you would have cmv.  That being said:  go to the eye doctor.

http://timehasshownme.com
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #15 on: January 19, 2012, 04:42:29 AM »
So, interestingly enough...  My ophthalmologist has done a great many examinations, with two more appointments scheduled over the next two weeks... and perhaps more to follow.   Anyway, my doctor did a test for CMV, and although my viral load is undetectable, and my cd4's are at 550, I tested positive for antibodies for CMV. 

The Ophthalmologist and my doctor are working in tandem to follow my vision issues as the Ophthalmologist at the MAYO clinic is of the belief that we are witnessing THE BEGINNING of CMV destruction on my eyesight. 

So, despite the initial assertions that people CANNOT suffer from CMV issues when their numbers are so good, documentation does indeed exist (even on the internet) showing that people with reconstituted immune systems and numbers like mine can indeed be affected by CMV.  (however it is somewhat rare)

I was surprised to learn of this, but I'm glad that I've got some answers, even if they aren't as conclusive as I had hoped.  My eyesight is continuing to worsen, and I have an MRI scheduled to map out my optic nerve on February 2nd and another full set of tests to see the progress. 

I'm still kind of scared... although I'm glad to learn that I *DON'T* have syphilis. 

Nice.

Offline wolfter

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Re: vision problems - CMV Retinitis maybe?
« Reply #16 on: January 19, 2012, 08:03:47 AM »

So, despite the initial assertions that people CANNOT suffer from CMV issues when their numbers are so good, documentation does indeed exist (even on the internet) showing that people with reconstituted immune systems and numbers like mine can indeed be affected by CMV.  (however it is somewhat rare)
 



According to the CDC, it is EXTREMELY rare to be affected by CMV if your cd4 is over 100.   It is estimated that up to 85% of the population will eventually test positive for CMV.   

I have had several issues that were attributed to CMV which ended up being total BS.  I had my first heart attack when I was 36 and was told by the cardiologist that it was a result of CMV.  Luckily, by the time I had my 2nd one, I had switched doctors and he sent me to his preferred cardiologist.  He correctly discovered that I had a 90% blockage in one of my arteries that needed addressed.

My previous ID doctor also declared that I was suffering CMV retinitis when I started loosing my eye sight.  He also thought the lessions were unremarkable and didn't offer any further suggestions.  I finally switched to my current doctor who discovered I was suffering from Cryptococcal Meningitis. 

Even after a long hospital stay, my vision continued to worsen.  An MRI showed I had a mass on my optic nerve.  So I agree that is a good place to start.  But I've personally learned to not just accept that CMV is automatically the cause of things. 

I'm not sure if you're on HAART, but some patients suffer IRIS after starting treatment.  Inflammation can occur that affects your vision. 

Take care and best wishes.

Wolfie
productivity breeds content

Offline skeebo1969

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Re: vision problems - CMV Retinitis maybe?
« Reply #17 on: January 19, 2012, 10:06:23 AM »


The Ophthalmologist and my doctor are working in tandem to follow my vision issues as the Ophthalmologist at the MAYO clinic is of the belief that we are witnessing THE BEGINNING of CMV destruction on my eyesight. 

So, despite the initial assertions that people CANNOT suffer from CMV issues when their numbers are so good, documentation does indeed exist (even on the internet) showing that people with reconstituted immune systems and numbers like mine can indeed be affected by CMV.  (however it is somewhat rare)

I was surprised to learn of this, but I'm glad that I've got some answers, even if they aren't as conclusive as I had hoped.  My eyesight is continuing to worsen, and I have an MRI scheduled to map out my optic nerve on February 2nd and another full set of tests to see the progress. 

I'm still kind of scared... although I'm glad to learn that I *DON'T* have syphilis. 

Nice.

 I don't recall what the examination was that my Ophthalmologist performed on me.  I do know it was brutal, both in what it entailed and from him getting angry with me for not keeping my eye wide open while he forced this colored round plastic thing up to my eyeball.  "LISTEN !!! This is important!!  If you're going to fuck around I'll stop now!!" he yelled.  The problem was I wasn't fucking around, it was just hard to keep my damn eye open with a piece of plastic pushed up against it while he shined a megawatt bulb  in it at the same time.  Plus the drops didn't help either.

 Joseph, it was brutal stuff but at the same time conclusive in it's findings.

 My doctor and I had a cordial conversation before the above happened.  He explained to me how many of the AIDS patients he saw during the 80's and 90's were afflicted with CMV retinitis and how serious of an issue it was then. 

 It surprises me that your eye doc can't conclusively come to a finding regarding CMV.

 Regardless, I know how worrisome eye issues can be.  I had many of the symptoms you described early on in my infection.  I can distinctively remember not being able to tell what time it was from one of those red LED alarm clocks every morning.  So strange it was for a person who always had 20/20 vision.  And yes, the headaches can be brutal.

 The solution to my problem was simple though, worsening eyesight was strictly due to my getting old.  It all started when I was 36 and I didn't comply with eye wear till I was 41.

 In any event I hope you get some answers soon.  During the above I was always a nervous wreck thinking it was something much more nefarious.
I despise the song Love is in the Air, you should too.

Offline denb45

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Re: vision problems - CMV Retinitis maybe?
« Reply #18 on: January 19, 2012, 10:54:48 AM »
Damyum Greg, them doctors up there in Ohio are SCARY, seem like they don't wanna follow up on anything, if your queer & have AIDS, I bet they will if your srt8 and you don't  have AIDS, perhaps maybe you should move to another State that gives a dam  :-X
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline newt

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Re: vision problems - CMV Retinitis maybe?
« Reply #19 on: January 19, 2012, 12:35:37 PM »
If the Mayo Clinic eye doc thought it was the start of CMV retinitis damaging your eyes why didn't he/she treat it? 2nd Feb for tests and time after for evaluation is an awful long time to wait if it is this.

- matt
"The object is to be a well patient, not a good patient"

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #20 on: January 20, 2012, 12:21:16 AM »
Because the sonogram of my eye showed it to be in good condition, despite a freckle on the back of my left eye, they're doing the MRI to look at my nerve.  So now I have two ophthalmologists and my doctor on the case.

Again, THEY THINK it may be the beginning of CMV retinitis, and he's following it.  I have some tests scheduled on Tuesday, and then again on February 2nd.  Although it is rare, it does evidently happen.  The new opthalmologist I'm seeing on the 2nd is evidently a specialist in such matters and will be redoing all of the tests (I was referred to the second one by the first, after the CMV test results were provided to him by my doctor - later in the day after my visit.  At this point, the original ophthalmologist shared my data with the second ophthalmologist and an appointment for the 17th was scheduled in addition to February 2nd.)  I must confess, your questions are the same that I have.  And, again, I'll let you know when I get answers.  I am pretty worried.

And, though I appreciate your cynicism, please understand that I'm just stuck in the process.  More tests are coming - because the prospect of CMV does seem so unlikely.  I truly invite any questions you believe I may not be asking my doctors.

Please don't bully me for sharing only what I've been told.  I'm just looking for answers.

:/

-joseph

« Last Edit: January 20, 2012, 12:49:09 AM by Strayboy74 »

Offline wolfter

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Re: vision problems - CMV Retinitis maybe?
« Reply #21 on: January 20, 2012, 12:01:54 PM »
I'm not sure who the bullying comment was directed at, but I saw nothing but support from all the comments.  Sharing knowledge and experience is another tool for being well informed.

Wolfie
productivity breeds content

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #22 on: January 21, 2012, 03:05:03 AM »
Sorry, I'm just feeling a little vulnerable right now. :/ 

Offline newt

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Re: vision problems - CMV Retinitis maybe?
« Reply #23 on: January 21, 2012, 08:34:25 AM »
Sorry I didn't mean to come over as aggressive.

From what you say THEY THINK seem to be the key words here without clear evidence of CMV retinitis. I am always discouraged when doctors theorise on possible diagnoses, but then it is their job to do so. This always makes me anxious. I hope the tests reveal what is going on soon, CMV or otherwise.

- matt
"The object is to be a well patient, not a good patient"

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #24 on: January 22, 2012, 06:57:10 AM »
I can't tell you how worried I am.  I mean, I have no idea what I'd do without my eyesight.   I go to sleep hoping to wake up and it all is just over.   I am going to ask questions on Tuesday, but again, I'm feeling really stressed and anxious.  I'm also running low on lorazepam. :/

joseph

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Re: vision problems - CMV Retinitis maybe?
« Reply #25 on: January 22, 2012, 11:35:19 AM »
Joseph,

I can't blame you for being stress, anxious and worried.  I recall several friends having CMV retinitis "back in the day" (circa 1990) before combination therapy, and from what I remember it was a fairly straightforward diagnosis -- visual examination of retina, backed up with a blood test for CMV (though many people have CMV present in their bodies).  I thought CMVC retinitis was all about the retina, though it makes sense to rule out other problems (e.g. the MRI to look at your optic nerve).  Still, if they believe it is CMV retinitis, ganciclovir would likely be the treatment, and you may want to ask your doctor's directly about this.  As Newt said, time is a-wasting.  Beyond starting the treatment discussion itself, this question may prompt them to reveal more about what they are thinking the problem is, or is not. 

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Strayboy74

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Re: vision problems - CMV Retinitis maybe?
« Reply #26 on: June 22, 2012, 04:07:26 AM »
It seems so long ago that my panic of CMV was so alive.   Strangely, as the vision problems began, they simply disappeared.   I was told that this may happen.  And, although I *DO* have CMV in my system, it clearly wasn't the issue, as many of you asserted.  Thank you all for the help, and attempts at easing my mind. 

-joseph

 


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