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Anonymous
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ORAL HAIRY LEUKOPLAKIA
      #160836 - 09/29/05 05:29 PM

i am sure i have ohl. oral hairy luekoplakia. i have had a tounge problem now for at least 3 months. i read and read about possible problems, went to the dr. not thrush! seems to resolve on it's own but comes back. affects my inner cheecks too. burns mostly. started taking boatload of vits. feel great otherwise. but, had ohl, found out i had herpes!!!, swollen glands and slight fever for 'bout10 days in june. had 3 minor,very minor outbreaks in 3 months. feel fine otherwise.TOO DAM SCARED to get tested. am i infected?

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Anonymous
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Re: ORAL HAIRY LEUKOPLAKIA new
      #160840 - 09/29/05 07:50 PM

Ohl Dont burn or isn't painful....it doesn't come and go weekly
I have some white stuff on one side of my tongue that looks like ohl and on my inner cheeks i also have huge swollen glands in my neck for more then 2 months now that haven't subsided
i didnt have fever but low fever as u describe wouldn't be that of hiv....Fever with hiv is usually a high fever over 102

its been over 4 months since my possible exposure and ive tested negative multiple times for hiv-1 and 2 including 2 pcr dna's out to 4 months so far and all are negative
and i still have these symptoms and more

Symptoms mean nothing honestly
Stop worring....Go get tested as soon as possible (tommorow) and go on with your life man and stop trying to diagnose your self
Ask any doctor u can find and they will tell you that u cant diagnose hiv with symptoms
In a study in San Fransico of over 400 patients that inrolled
No more then 25% were correctly identified of having hiv by symptoms alone by specialist(that ur not )
The symptoms that most accurately diagnost hiv(25% keep in mind) was high fever and rash no other symptoms was helpful diagnosing hiv

Go to www.Hivtest.Org and get tested man
and let us know your negative results too
Good Luck!

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Anonymous
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Re: ORAL HAIRY LEUKOPLAKIA new
      #160842 - 09/29/05 07:54 PM

I forgot one thing that also proves your not infected
herpes out breaks during hiv infection dont go away quickly and then come back they usually are present for atleast 6 weeks or more before the zoster go's away


Stop messen around and get tested

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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160854 - 09/29/05 10:23 PM

thanks for your reply, although, i have still not decided to get tested, literally too scared. i will not engage in high risk behaviours because of possible symptoms. my thoughts have been this.... if i have ohl and herpes(ohl btw is a herpesvirus i have read). my reading suggests that my immune system is already severaly compromised but i don't have rashes, i have gained weight rather than lose, no fevers(i attribute my last fever and swollen nodes to primary herpes infection as also stated by my dr.) i don't have night sweats, no diarrhea no unusal fatigue... damn everybody around me is sick and i haven't caught it. i have a boyfriend,who i have spoken to about all this, he has been sick with a cold or flu for a while and i haven't caught it. i don't get it. i have been to the dr. several times re:tounge and mouth, burning right now in fact. he said i should get blood tests. IT LOOKS EXACTLY LIKE OHL!!! i read about alternative treatments and now take, amoung many others, beta carotene and l-lysene. anyhow.... i agree, i could end all the guessing with a test but can't muster the courage. was hoping to find advice and support here. pls. keep the responses coming.

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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160856 - 09/29/05 10:35 PM

thats not neccessarily true about having hiv will cause a herpes out break to last at least 6 weeks. When I get an outbreak, if I take the oral medication for it, it goes away within a week or so.
I am not saying this, because I want the original poster to be concerned about hiv. I am saying it, because you cant assume that hiv causes ALL herpes outbreaks to last that long. but YES, if I do not take my medication for it, they do last a long time. and I think that would be provided ANY individual who had herpes, especially depending on how long they had it.

and also to the original poster....your assumption that you have ohl, is being diagnosed by you. you said "you are sure" not that your physician has diagnosed it. and with ONE sypmtom of hiv, you can cause yourself into a frantic that you will have hiv because of it.
So, if a person were diagnosed with neuropothy, would you assume they too must have hiv? because that is not true either.

you can get thru this. you can ask people to assure you by your symptoms. if you know this board at all, you know that cant happen

good luck, please keep us posted

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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160861 - 09/30/05 01:19 AM

This is the original person who first replied to this thread
This first part goes to the person that replied to my first response, My exact statement was this

"herpes out breaks during hiv infection dont go away quickly and then come back they ->USUALLY<- are present for atleast 6 weeks or more before the zoster go's away"

First notice the word i used " USUALLY" meaning most of the time not allways....If i said Herpes outbreaks are always longer then 6 weeks with Hiv then u would be correct to correct me

Second using medication doesn't apply to my response, You would be using an outside substance to help treat and resolve the herpes outbreak, What i was talking about was the body's natural response to the outbreak, Not everybody pops a Valtrex to treat them,Having Hiv and especially with a weaker immune system that is USUALLY reported with OHL(Which i dont believe he has) would make the reaction to the outbreak longer in duration since the body would be at a weak stage considering when OHL is BELIEVED to be associated with having a cell count under <300 and close if not in the Aids defined stage
I added this link for a lil more information
http://www.thebody.com/Forums/AIDS/Infections/Archive/Oral/Q71652.html

This is for the original poster

You do not have Hiv or Ohl
OHL is related to the EBV Virus which is a member of the herpes virus but have nothing to do with each other u can have OHL and not have Hsv-1 or Hsv-2
Its not related like chicken pox and shingles where u can't have shingles when u never had the chicken pox
You most likely had ChickenPox yourself since more then 90 percent of people have had(even though some may not remember or they may have been very mild especially when real young) You would have been more likely to have shingles then Ohl if your cell count was that low as u've said
The fact is its not Ohl i bet you it a hyper-keratinized tissue due to trauma to the area meaning the lession is probably from irritation from the rear teeth most likely the moller(Where i bet the lession is) and i bet its also very close to the lingual tonsils on the side of your tongue(not the two in your throat) because this area of the tongue has a more geographical area and ridges
Ohl usually goes away when cell count goes up, it does come and go,It would remain there untill treated with medication or the rise of cell count,which wouldn't make sense in your case because your not on medication for it and your cells wouldn't be jumping up and down like that

You want to know why you didn't Have Fever,Rash(which are the 2 most common symptoms of hiv infection If symptoms are present at all) and diarrhea(which you would have most likely experience at some point during all this especially cause u have a "Low Cd4 count" and other symptoms u haven't had is because you do not have Hiv
A few herpes outbreaks(which are known to be sometimes triggered by stress for example) and Ohl(especially that burn lol which is never known to be associated with pain at all and doesn't come and go when it feels like it but tends to grow and be more define) do not indicate Hiv and that your immune system is weak

Now you Don't want to test.....The laws behind u and Thats up to u man as long as you dont put any people at risk untill you know forsure im coo with that, But just because YOU(as in the poster)DONT HAVE SYMPTOMS OF HIV it doesn't matter because not everyone has symptoms and u need to test for it if u have put yourself at risk(which u haven't shared with us by the way)
But I must also say if you dont get tested your a jack ass and i wish i knew u to smack some sense into u but i dont and i cant so i can only tell you that u should really think about it hard because
1) Do u really wont to go ahead and continue weeks,months, or years worrying about something that u most likely do not have and worry if your going to de from it? waste all that time of stress depression anxiety and worry over something that was never there?The time untill u test and find out your negative will be a waste of time in your life, Your not going to be motivated to do anything your going to worry about what if and your not going to do anything with your life till then because of the fear of a uncertain future
your going to be distant from family and friends and spend most of your time alone ,on the internet looking up ohl and other symptoms and thinking about hiv...do you really want all of this when it only take 5 minutes to really find out?
2) If u were infected do u want to wait untill the virus destroys your immune system to a point were its very damaged and meds can help you only so much ?

The truth is even if you were positive with todays meds(even though strong to some but not to others) you can live a long life and probably die of old age
People with out meds can live 10 years maybe a lil more but the truth is there people out there that have been infected since the mid 80's walking around with cell count well in the normal to high range that a non infected person would have
wouldn't u rather be one of these people if u were infected?
catching it and monitoring it early can help save your immune system so much

Its your choice to test man but honestly just do it....I was scared to i swear to god i told my self f*ck that im not going i rather not know, i said this because i was scared, But after i kept thinking about it i was more scared not knowing then knowing
When i tested for the first time i was so sure they were going to say positive, i would of bet anything i was convinced because i had the symptoms u had plus alot more im not bullshitting you one bit
but u know what they were negative and each time i kept testing again they were negative when i was sure that it would be positive so i got even more fustrated because i knew i was positive and went and took a expensive pcr dna that test's directly for the virus embedded in blood cell and would be sure they would find it because i was sure i was positive,then it came back negative then i was still worried maybe it was a lab error so i tested again 15 days later(2 1/2 months from exposure) and again negative, now its 4 months and i still test negative
What Im trying to tell u is everyone thinks there positive for sure because of symptoms and are convinced because they think it all makes sense when it don't!

I really hope you grow some balls, I know it scary but its the best thing u can do for yourself no matter if it's negative or positive either way its the best and only thing to do...i hope u gather the strength to do it
Good Luck

P.s I am now very interested in knowing what type of exposure it was, If you would let us know -Thanks



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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160879 - 09/30/05 11:54 AM

i don't know when possible exposure occured. i did have 'fun' in college 7 and 8 yrs ago. i can't remember when i would have been exposed. i think at least most of the time i was protected. as for the person who posted about my 'ohl' my lessions appear on both sides of my toungue along the whole length, minus the tip. there are reddened and sore lines across the insides of my cheek too. my toungue sometimes grows white plaque along the lateral margins and can usually be scarped off with my toothbrush or finger nail. although, i t does comes back. there are distinct folds or lines along the edges where the plaque grows. it also grows inside my cheeks. but like i said, it seems to remise. i wonder if i am coinfected with thrush. i do smoke which is an irritant but i also use a steriod puffer which may cause thrush. i also get vaginal yeast infections but treat them with a third of otc meds. and they go away. i raelly do appreciate your responses. i have tried to open up to friends and family about my concerns but nobody believes me. a test would give me a difinative answer but i think if i am hiv + i would liek to get my fatal o.i. and be gone. i would not wishto drag my friends and family through my suffering. what do you think about that?

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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160883 - 09/30/05 01:09 PM


Hun listen your symptoms of Ohl dont Sound like Ohl at all
OHL can not be scrapped off and doesn't come and go
Look it up on the internet and u will see what i mean
Thrush doesn't usually appear on the lateral portions of the tongue, its usually on the top of the tongue and other area's of the mouth like the soft and hard palate and inner cheeks among other places
using a steriod in hailer which im pretty sure your reffering to advair does cause trush, Go to Aegis.com forum(askthedoc) and you will see someone asked a similar question
Also i know this because my G/F works for Gsk (the maker of Advair) and Advair is also one of her product's along with Wellbutrin and now Boniva

Again Ohl does not scape off(notice im not using the word usually because it never does, Look it up) Smoking me be another cause along with the Advair that u may have these "oral symptoms" but none of them sound like Ohl or even thrush to tell u the truth but definitly not OHL i promise you

Its up to to get tested or not its your life
But i just cant understand why u want to ruin your life with fear of something u do not have, i just dont understand
Also u say if u have hiv u rather just get your fatal OI and be gone,there really is no fatal OI that will just instintly kill you they will most just make u really sick and maybe after a long while will kill you

You said your risk was 7 or 8 years ago
If you were really infected for this amount of time and were suffering from a low CD4 count with Ohl itwould not be your only symptoms that u would be having since u would most likely be suffering from other O.I's as well

Im very sure u dont have hiv and im totaly sure that u dont have OHL because nothing u say sounds anything like it because OHL dont scrape off, It doesnt come and go with out treatment or Cd4 rise and it isn't painful or burn like u complained

I think u need a consoler more then a doctor seriously
you need to come to grips with your fears, Get tested and Get on with your life because you honestly have nothing to worry about
But if you want to "get your Final OI and be Gone" thats your choice but you will just be waiting in fear for something that won't come and live a horrible life till you finally prove to yourself that you dont have hiv

I really hope u find it in you to test and move on
I wish u luck

IF you dont believe me about Ohl Here's is a response from Dr. Reznik a Director of Oral Health Center of the Infectious Disease Program of Grady Health System in Atlanta, Georgia

Oral Hairy Leukoplakia (OHL):

OHL presents as a white, corrugated (rough) lesion that normally appears on the lateral borders of the tongue. OHL is related to the Epstein-Barr virus. The key to differentiating between pseudomembranous candidiasis (thrush) and oral hairy leukoplakia is that OHL will *not wipe away* and is usually limited to the sides of the tongue. OHL is not painful, nor does it bleed. Treatment is not usually necessary as we have seen a reduction in the occurrence of this lesion since the advent of HAART.



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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160890 - 09/30/05 03:52 PM

thanks again for your response, it really does mean a lot. i have read so so much on ohl and it does in some cases rub off. i think i read that on oral symptoms of aids, also many newer aticles state that it may be the first thing to show up. i know, i know, you think i am crazy, sometimes i agree. i work in mental health, lol. i am showing signs of ocd,lol. the puffer i am on is flovent and i don't follow it as prescribed, i take it only when i feel i have to. it is quite strong and steriods virtually wipe out your immune system. again, i am so greatful for your response, just a quick question though... what is your status? r u the one who is 4 months in?

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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: ORAL HAIRY LEUKOPLAKIA new
      #160892 - 09/30/05 04:13 PM

I too dont think you have hiv. I think your fears are allowing these feelings and symptoms to last and progressively get worse. The only way you will know is to be tested.

you say, you are worried about getting some sort of OI by knowing your status, and putting your loved ones thru that. What do you suppose will happen if you dont know, but you did have it (which keeping in mind....I dont think you do). but you will find out too late--as in, when you get an OI. Then what will that put your family thru? If you truly want to be safe from OI's, the only way to do that is to KNOW. !
I too was terrified about the risks I have put myself in. Damn right its scary. I didn't want to put my family thru any of that. But I also knew, if I didn't know.....then there is nothing you can do about it. No way of helping, or saving your future.

I wish you all the best. But what I mostly wish for you, is the courage to do it and get it over with. You will be fine. NO MATTER THE OUTCOME. but if you DONT go......there is no way, or no medication that can help.

love and prayers,
debbie

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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160921 - 10/01/05 08:59 AM


I have read about OHL very often and i have never seen one statement claiming OHL can be rubbed off at all
The only thing i have read remotely close to that is that is u scrub it hard enough or use a certain mouthwash u may change the color of it a lil but never goes away
please provide a link to this site that claims ohl cam be rubbed off
You also say Ohl can be the first signs of hiv...This is partly true...oral infections can be a first sign of hiv not really OHL
Anyways it dont matter because one your not at the first stages your 8 years past your exposure you would be claiming about alot of other problems besides OHL at this point

Your Not a kid...Your i guess around 30 years old...you really need to like it and do what u got to do
the way your acting it like a 20 year olf would
There's really nothing more i can say to you besides you dont have OHL(100% percent sure) and your chances of being HiV+ is very very low, Testing is the only way to figure this all out,If you want to live in fear about having hiv then go ahead and dont test its your choice and life
But if you want to move on from all of this needless worry's then go to tested and move on with your life and be careful in the future

Yes im negative as of now and am at over 4 months from my possible exposure, For the last few months i've been living in total fear and basically reading about hiv hours and hours a day
I keep testing because if i do have it i want to know and if i dont have it i want to move on
I wouldnt be able to ignore everything and live life ignoring the fact i could be positive but thats just me
I made a stupid mistake and cheated on my longtime g/f and now im paying it back with fear and months of my life wasted
to this disease
Chances are that im not infected since i test to antibodies test's out to 4 months and 2 Pcr Dna's but like you and others im so fearful of the symptoms described of hiv and keep worrying myself with them
never the less i want to know and be sure, i dont understand why u dont either but thats your choice and nobody can make u test

I wish u luck and hope u one day decide to get over hiv and get tested and let us know how much better u feel to be over it

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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160976 - 10/02/05 06:00 PM

i think i found what a different diagnosis of my tounge may be... i found a link containing pics that looked liked my problem(and ohl). it is called mucosal cinnamon reaction. coincedentley, i chew cinnamon gum and have cinnamon toothpaste. the cheif complaint with this condition is burning. hope this info can help others too. LINK: http://www.thejcdp.com/issues011/case11/choice_c.htm


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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160980 - 10/02/05 07:18 PM

i hope it helps u mostly lol
are you going to get tested now?

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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #160983 - 10/02/05 08:47 PM

nope, still not getting tested, still have other symptoms, in fact i am toting a 100.2 fever right now, sore chest, yeast infection...yikes!!!!! but no (ohl) symptoms or herpes flare up. i only found out about the herpes in july! ttyl.

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Anonymous
Unregistered

Re: ORAL HAIRY LEUKOPLAKIA new
      #161011 - 10/03/05 09:08 AM

LoL
you wouldn't have a fever 7 years after being infected and fever with hiv is usually over 102 anyways
and a sore chest? lol wow u must have hiv forsure thats the hallmark sign
seriously u need a counsler theres no one here or anywhere else on the internet that can help u
I wish u good luck and hope u see someone to help you with your mental problems because your going to link eveything u think thats wrong with u too a disease u dont have

i try'd to help but your probems are way beyond anything i can help u with, i really dont know why you even posted your questions if u dont want to listen to the answers people provide
all i can say is your symptoms sound nothing like hiv at all, If they did i would tell you but they dont
the only reason i told u to test is because u did have unprotected sex(8 years ago lol) but the main reason i tell u to test is so you can drop these fears of hiv and move on
but u dont want to move on you want to have these fears
so go ahead and live in fear its your life
But dont waste other people's time asking questions when your not going to listen to the answers, we can't just sit here and tell u that hiv isn't your problem
good luck



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