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Author Topic: Oral KS  (Read 2477 times)

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Offline RedBear

  • Member
  • Posts: 34
Oral KS
« on: May 20, 2013, 12:06:19 PM »
Anyone have any insight to this.  On a routine cleaning the hygienist said she saw a spot that she wanted the dentist to look at.  He looked at it and said it may be some sort of trauma.  He wanted to keep an eye on it and see me back in 2 weeks. I chew ice a lot and sometimes the edges are sharp, however Kathy mention the reason he was concerned was that there was a possibility of oral KS...she said it was probably unlikely as my t-cells are 456 an VL is UD.  However it has sent me into quite a tailspin...freaking out but trying not to let my partner see it.  I told him (negative), and he is now worried...I put on a good face for him citing my numbers and the ice chewing...but inside I'm freaking out.  Kathy told me if it is that there are treatment and that they have learned a great deal about KS over the past 30 years.  Says it pretty benign, but still doesn't comfort me....anyone ever have oral KS...would appreciate feedback if so.
Finish each day and be done with it.  You have done what you could.  Some blunders and absurdities have crept in; forget them as soon as you can.  Tomorrow is a new day.  You shall begin it serenely and with too high a spirit to be encumbered with you old nonsense. 

Offline mikeyb39

  • Member
  • Posts: 980
Re: Oral KS
« Reply #1 on: May 20, 2013, 08:11:06 PM »
Hi Redbear,
I don't think I would trust the info of your dentist.  I would see your hiv doctor they can also look into your mouth as well and probably give you a better idea if that is indeed what it is.

11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Oral KS
« Reply #2 on: May 20, 2013, 09:22:04 PM »
Oral KS is almost unheard of in someone with your numbers. Nonetheless, I would schedule an appointment with your HIV doctor to find out/rule out what is going on.

I had PCP about 5 years ago when I had a cd4 count of 12 and a VL of over 2 million - and even then, in Atlanta (a major hub for HIV research and treatment) no one believed I had PCP until I had a lung biopsy. It's that rare these days.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline RedBear

  • Member
  • Posts: 34
Re: Oral KS
« Reply #3 on: May 27, 2013, 06:36:48 PM »
I live in Atlanta also.  As you said numbers state that I shouldn't have KS.  I too had PCP about the same number of years ago--Emory--biopsy confirmed.  Been going to the Ponce Clinic ever since.  Like it because all in one place, makes it easy to get in and out...they initially had me scheduled to go to Emory clinic...however the Social Worker said they could get things moving faster and got me on a research project.  Freaked out at first re:surrounds...but honestly my treatment there has been excellent as well as being treated with dignity and respect...know I could go elsewhere, but why...love the place, love my doc/nurse team etc.  dentist there too, one reason I was a little freaked about the news.   My only issue is I have few friends that will admit to being HIV, so no one to talk to about issues like this...this forum has been helpful....o on the 31st for follow up of dental issue...still a little freaked.  My partner is in denial anytime I have any symptoms..so don't usually talk to him...moved here from St. Louis and people here aren't the same, long term friends...so nice knowing someone in Atlanta is listening...thanks...David
Finish each day and be done with it.  You have done what you could.  Some blunders and absurdities have crept in; forget them as soon as you can.  Tomorrow is a new day.  You shall begin it serenely and with too high a spirit to be encumbered with you old nonsense. 

Offline Grasshopper

  • Member
  • Posts: 526
Re: Oral KS
« Reply #4 on: May 28, 2013, 02:47:29 AM »

"KS has been known to occur in some HIV-positive people with relatively high T-cell counts (around 500 cells/mm3). "

Offline CallMeSid

  • Standard
  • Member
  • Posts: 105
Re: Oral KS
« Reply #5 on: May 28, 2013, 09:58:28 PM »
Sending good vibes your way.  Glad to hear that you're getting it checked out by your HIV doc.  The odds are on your side.  Easier said than done sometimes, but try not to stress out.

Some HIV+ people choose not to disclose to their dentists because of the possibility that false alarms will be raised over the most minor of symptoms that would not provoke a second look in a person not known to be poz....

Just curious:  how HIV-experienced/knowledgeable is your dentist and hygienist?
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Offline rayman11

  • Member
  • Posts: 3
Re: Oral KS
« Reply #6 on: May 28, 2013, 10:36:59 PM »
KS don,t appear unless immune system is badly damage. usually with long term HIV infection without medication and t-cell count below 200. It happen due one of herpes virus. you got nothing to worry about as you have t-cell well above 400. however show it to your  doctor next time. and also stop worrying about it.

Offline TabooPrincess

  • Member
  • Posts: 287
Re: Oral KS
« Reply #7 on: June 04, 2013, 03:46:48 PM »
Around a year ago, before I started meds, I had white patches all over my tongue.  It started with just one at the back and wouldn't go away and gradually spread.  I had to have one of them chopped off at a specialist mouth clinic to check what they were - turns out it was something like what you get on your heel of your feet, hyperkeratosis.  No explanation as to why this happened but my numbers before meds were similar to yours.  I was told it was nothing to do with hiv and was harmless.

Strangely enough it all cleared up after I started meds...so it must have had something to do with it!!

Hope this helps, try not to worry.  I convinced myself I had mouth cancer too.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud


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