POZ Community Forums
Main Forums => Living With HIV => Topic started by: RedBear on May 20, 2013, 12:06:19 pm
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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.
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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.
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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.
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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
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http://www.aidsmeds.com/articles/KS_6752.shtml
"KS has been known to occur in some HIV-positive people with relatively high T-cell counts (around 500 cells/mm3). "
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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?
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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.
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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.