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Author Topic: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)  (Read 8504 times)

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Offline baires

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I really wish this was one of those "a pole dancer sucked my pole for 5 seconds, could she have infected me?" posts but unfortunately it isnt.  Ive had unexplained PGL for about 5 months now - nodes swollen in the posterior cervical, supraclavicular and epitrochlear (elbow) areas all on the left side.   Doxycycline treatment (self prescribed) didnt clear them.  I didnt realise at first how significant it was, although I definitely felt them swell up (at first only in the neck), theyre not painful and you cant easily see in the mirror.  Also I thought I hadnt put myself at any great risk (oral sex) so anything serious was highly unlikely (I ALWAYS use condoms other than for oral) so I forgot about the nodes.  Recently though, having realised that the glands still seemed swollen, I went to see a doctor who confirmed the lymphadenopathy and he is very concerned about HIV.  I have also now developed peripheral neuropathy in two fingers of my left hand - from swollen node compressing nerve at the elbow. I was negative at the end of 2005 before I left the UK for Argentina.  My risk since then has been receptive oral sex,  several times to ejaculation, with partners of unknown status and also for a longer period with a regular partner of unknown status also - although said he tested negative at start of 2006.  I sometimes swallowed and sometimes spat.  My mouth is in reasonably good condition. Also, on one occasion (in July) during frottage my regular partner 'slipped' and penetrated me very slightly (1cm?) for about 2 seconds.  Im not sure how to evaluate this.  I havent had any fever or sickness other than an unremarkable cold in July/August (winter in South America) although at the end of August I did suddenly develop significant rectal pain - especially when going to the toilet - the pain was so bad I went to Casualty (Ive no GP as such here) and after a quick check they diagnosed a hemorrhoid which cleared up totally within a week of simple treatment and change of diet.  I am now desperately concerned and in retrospect feel I fatally misjudged the risks I had run.  I notice that GMFA in London now have a campaign saying "Sucking cock is much safer if you dont get come in your mouth" - this "MUCH safer" seems like a new emphasis to me.  I get my results on Monday, theyre doing an urgent request to the lab. The doctor, who was excellent, spent an age with me in the consultation and examination going though various other possibilities for the lymph node swelling: mono, medications, cancer, toxoplasmosis,TB, but he didnt think my condition was very suggestive of these other possibilities.  I feel like an enormous wave is rising and is about to come crashing down on me - at times Im shaking with fear. I cant believe this is happenning to me.  Does anyone have any other ideas about what it could possibly be?  The doc is checking for syphilis also but I dont think it usually presents with PERSISTENT lymphadenopathy - also in theory the antibiotic treatment shouldve sorted it if it were that.  I know the die is cast now and I have to wait for the results.  I dont want to give myself false hope but Im beside myself with worry and wondered if anyone had any ideas or experiences to share? Thanks very much. The work you do is very, very important and I have the greatest respect for you. Paul

Offline RapidRod

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #1 on: January 07, 2007, 03:32:00 AM »
Keep your fingers off your lymph nodes. Poking and prodding them make then swell. Nothing you have stated in reference to symptoms are an indicator of hiv. You don't get HIV from frottage. I wouldn't spend my time looking into HIV, because of symptoms. I would first look elsewhere. Symptoms or lack of is no way to diagnosis HIV only a test will tell. Myself I wouldn't test for HIV over this. I would want other testing done first. Again I don't see a concern here with hiv.

Offline Ann

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #2 on: January 07, 2007, 07:44:05 AM »
baires,

It's unlikely you were infected through any of the incidents you report. It is unclear whether or not you have recently tested for hiv, but as anyone who is sexually active should be having regular sexual health care check-ups, including but not limited to hiv testing, then you may as well test so you can rule hiv out.

The fact that all your swollen glands are on one side leads me to think something may be going on, but not hiv. I hope your doctors aren't concentrating on a sexually transmitted infection as the cause because they know you are gay. They may be overlooking something important and unrelated to sex. Keep working with your doctor to get to the bottom of this problem.

There have been long-term studies of couples where one is positive and one is negative. In the couples who used condoms for anal or vaginal intercourse, but no barrier for oral activities, not one of the negative partners became infected with hiv. Not one. This shows us two things. One, condoms are very effective for the prevention of hiv transmission. Two, oral sex is much lower risk than previously believed. We now have the evidence that oral sex is a very, very low risk activity where hiv transmission is concerned.

With what you have reported, I'm expecting you to test negative.

Ann
 
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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 baires

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #3 on: January 07, 2007, 07:54:40 AM »
Thanks for your reply.  I understand what you say about looking elsewhere for a cause first. I know that my exposure, inspite of repeated ejaculation in my mouth, is still definitely low - albeit not zero. I am also well aware that frottage in itself is no risk - I meant the 'slip' that ocurred during frottage.  I also know that you can't conculsively diagnose on the basis of symptoms alone.  However, medically confirmed Persistent Generalized lymphadenopathy (Im emphasising the Persistent and Generalised here) is undoubtedly highly suggestive of HIV in the absence of other likely causes - especially in a gay man with 'multiple' partners. 

Also, I have certainly not been poking and prodding my lymph nodes, quite the contrary. As I said I actually completely forgot about them! They are non-tender and not immediately obvious to the untrained eye.  It is my doctor who has confirmed that they are actually significantly swollen (over 5 months now) and that they are worrisome.  I actually went there thinking they'd say it was nothingl!  These are not very comon areas for node swellings..in particular supraclavicular (collar bone) node swelling is well known as an 'almost always abnormal' sign of systemic illness.  Im no doctor but a quick read of the relevant medical literature shows that. I know anxiety can provoke many symptoms and could e.g. make someone think nodes are swollen when they are not and that some people cant distinguish a pimple from a node!  However, anxiety does not cause clinically confirmed lymph node swelling of this kind (I wish it did!).  Its not just a wee bit of redness in the glands at the back of my throat were talking about here!! I'm not having ridiculously unfounded fears after blowing grandma a kiss!!  I certainly think HIV testing is very much called for in a situation like this.  Im relieved to hear someone emphasise that there are other possibilites though.  The question is what might they be?? I was hoping someone might be able to share an encouraging experience with  kind of lymphadenopathy.  Its that Im finding it very hard now to feel confident that I protected myself sufficiently well.  Thanks again.

Offline Andy Velez

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #4 on: January 07, 2007, 08:27:13 AM »
Baires, I assume that the result you are waiting for is for an HIV test. Because that is the ONLY way you can reliably know your HIV status. As a rule it should be done at 13 weeks after the most recent risky incident. If I am reading your comments correctly you are long past that point in time for getting a reliable result.

There is absolutely nothing in what you are reporting which is in any way HIV-specific, which isn't surprising since the activities you have described are either no risk, (frottage), or very, very low risk, (giving oral).

Stop playing doctor with yourself. It's bad for your health. If your present doctor can't diagnose whatever is going on then get a second opinion or as many as necessary until you get an explanation. And as Rod has very wisely said, keep your hands off of your lymph nodes!

Good luck with your test. 
Andy Velez

Offline Ann

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #5 on: January 07, 2007, 08:47:08 AM »
Quote
Im relieved to hear someone emphasise that there are other possibilites though.  The question is what might they be??

baires,

There are too many different things that can cause lymph glands to swell for us to discuss them here. You must remember that the function of lymph glands is to deal with infections and the like in the body - so it's a bit like asking what can make your finger hurt. It could be anything.

This question is also outside our remit. This is an hiv website, not a lymphadenopathy website. All we can tell you here is that what you report, even the very brief slip during frottage, is not likely to have resulted in hiv infection. However, testing is the ONLY way to know your hiv status with certainty.

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 baires

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #6 on: January 07, 2007, 09:29:28 AM »
Ann, Thanks very much for your reply also.  I immediately recognised what you are alluding to re doctors and their approach.  Although I had a very good impression of this one in terms of his warmth and general openness (compared to some truly awful doctors Ive encountered!). I am also conscious of the fact that even with the best of intentions they find it hard to avoid approaching things much too narrowly in terms of my 'box' i.e.  as someone who has sex with other men.  I also, regarding my sexual risks, find it hard not to have any minor concerns I might have amplified if I mention to them that I have oral sex, quite often to ejaculation. I myself know that it is NOT high risk (otherwise Id never do it) and that the studies (especially those long term partner studies) have repeatedly shown extremely low levels of risk including with ejaculation.  Its just hard to avoid worrying now that I  might have been unlucky.  Also this whole 'oral sex' thing seems so confusing to me these days. I used to be extremely careful to avoid them ejaculating in my mouth - then I absorbed the message that "oral sex" is very low risk.  As I mentioned though, even more recently the GMFA campaign seems to indicate a shift from "oral sex is very low risk and may or may not be safer without ejaculation" to "it is MUCH safer when they dont come in your mouth".  That seems like a qualitative shift to me .. and one that is worrying me now that Ive noticed it.

The whole business about terminology as well doesnt help - the phrase "oral sex" ( and I realise Ive gone and used it aswell !) covers a multitude of things - to be blunt what I need to know is how safe is it to suck with them coming in my mouth.  Cunnilingus and insertive penile-oral sex are very differrent risk situations to mine with both of them being for all practical purposes non-existant risks, yet the not insignificant differences between these two activities and sucking with ejaculation seem to have gotten slightly subsumed into a too general "oral sex very, very low risk" category.   These are just general comments here, Im not talking specifically about this site Im talking about general iimpressions in the wider world .. what people end up with in their heads.  For myself, I know now that Im not going to feel sufficiently safe anymore unless I always avoid them coming in my mouth.

Anyway, I very much appreciate your response and welcome any further comments. I know this isnt a medics forum but any other possibilities for this PGL would be very helpful as Im feeling close to the edge - its profoundly worrying for me and I feel mentally exhausted and afraid.

Andy/Ann (just noticed other replies): Yes I am waitng for HIV test (tomorrow) it is months since these symptoms first appeared and about 8 weeks since my last potential exposure (of the same kind oral with him coming in my mouth) so it should be a fairly conclusive result.  I understand  (am V much hoping) it could be something else. I know what you mean about trying not to constantly check the nodes. Although, as I said, I wasnt doing that previously, now that Ive realised theyre still there its become difficult to not keep examinging them!!  Also, I understand that there is a limit to the scope/remit of the forum and you cant just generate the answer I want to hear - a specific medical condition that might account for all my symptoms and rule out HIV !!!  Thank you for putting it all in a bit more perspective for me though - its easy to forget that there may be other explanations...and please keep wishing me luck. My very best wishes to you all.

Offline Ann

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #7 on: January 07, 2007, 10:12:59 AM »
baires,

You are at much, MUCH higher risk of gonorrhea through sucking to ejaculation than you'll ever be at risk of hiv through the same. If you've never had your throat swabbed for gonorrhea, you would be wise to. Check out this Aidmap article.

The slip during frottage is something sometimes referred to as "dipping". If you had the hemorrhoid when this happened, then there was perhaps a bit of a risk - but if the dip was as brief and shallow as you say, it's unlikely. You're doing the right thing in getting tested, but I'm still fully expecting you to receive a negative result.

Good luck and feel free to keep us posted. In the meantime, try to stay productively busy doing something you enjoy. There's no point in searching the internet and speculating - only the test result will give you the answer you are looking for.

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 baires

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #8 on: January 07, 2007, 04:29:49 PM »
Ann, 

I have not had my throat swabbed for gonorrhea or had any other check for STI's this past year, which I know I should have.  Normally I would have but my situation here made it a bit more difficult to organise in that Im here only temporarily and the health care system here is largely unfamiliar to me.  Also, given that my main preocupation is HIV, I guess I kind of thought that as long as I was being careful with regard to that and didnt have any STI symptoms then there was no major issue anyway.  Having realised Ive got these symptoms now though Im confused and alarmed as to what it could possibly be.  My doc here said that certain infections wouldnt have responded to doxycycline - though most would as its a 'broad spectrum' antibiotic.  Also I just recently thought that if there has been some STI or other infection maybe we couldve been reinfecting each other unwittingly which could have stopped things resolving.  However nothings cleared in the past month or so either and Ive had no sexual contact in this time.  It also just seems very odd that any garden variety STI would present  itself in such a strange way with lymph node swelling - especially the elbow and collarbone.  Obviously Im praying that it is something like a simple STI which has happenned.

I feel like I maybe relaxed my safer sex practices too much having got through to the third decade of this pandemic (Im 38). I feel extremely nervous now and doubtful of my good judgement in adopting the safer sex strategy I did.  Thank god things have changed so dramatically for the better in the last 10 years with regard to treatment.  Im in a terrible state at the moment faced even with the low probability that I have become infected with this bloody virus.  I clearly remember the 80's and dont know how Id be if this were 1987 and not 2007.  I have read stories of  amazing courage and fortitude on these forums.  Thanks once more to all of you for responding and for your calmness, thoughtfulness and words of encouragement.

Offline Ann

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #9 on: January 07, 2007, 05:00:36 PM »
baires,

You said that you "self-prescribed" the doxycycline and I can't help but wonder if that means you bought the drug off the internet. I hope you are aware that counterfeit drugs are a major - and common - problem with online drug purchases. You may not have been taking an antibiotic at all.

Don't assume you had the proper stuff if I'm correct thinking you got your drugs off the internet. Get a full sexual health care check up, including a throat swab, so you can rule those types of infections out.

This could be something totally unrelated to sex. Please try to keep that in mind and make sure other possibilities are being investigated as well.

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 baires

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #10 on: January 07, 2007, 05:50:21 PM »
Ann,
Im fairly certain the doxycycline is legit.  I didnt get it off the internet.  Unlike in the UK antibiotics are fairly freely available here from chemists without prescription. Its common (although obviously not best) practice for pharmacists to dispense them directly.  I also had some which were an initial supply from home from a previous completely unrelated GP prescription - still in date etc also.  I notice now that it only treats "non-complicated" gonorrhea though so if thats what its been it wouldnt have helped much.  I know its not the best way of going about things but I honestly thought I was just taking them as an extra precautionary step as I didnt have any particular symptoms.  In retrospect Im sure it all sounds very haphazzard...so many things were going on at the same time in other areas of my life that when I felt fine I never really thought about it again.  I started taking maximum doses again just recently (Dec) when I realised there was still a problem with no effect either. The neuropathy had started in November and I had an appt in December re that when they told me that my nodes were swollen and reccommended I get checked out further.  I didnt go back to do that until last week because I got such a shock when they told me and I couldnt face dealing with a possible HIV+ test result over the christmas period.  Im getting everything else STD wise checked as well now - properly. Thanks for pointing out these possiibilties.

Offline Ann

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #11 on: January 07, 2007, 07:19:45 PM »
baires,

I started looking around, out of curiosity, and I cannot find one shred of evidence that doxycycline is ever used to treat gonorrhea. This is one of the reasons why it is not a good idea to self perscribe antibiotic or any other prescription drug. Just because they are readily available where you live doesn't mean it's a good idea - and it doesn't mean the drug you choose will be the right one for the job. You could end up doing yourself a lot more harm than good.

I hope you learn from this episode and leave the diagnosing and prescribing up to the professionals. I'm glad to hear you will be getting a full sexual health care check up. Take care of your body - it's the only one you have.

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 baires

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #12 on: January 07, 2007, 11:12:13 PM »
Ann,
No, I dont think it would normally be the very best choice antibiotic for gonorrhea.  It is definitely a possible option in its treatment though, has often been used and would usually be effective.  Googling Doxycycline + Gonorrhea reveals a number of articles e.g.  http://www.rxlist.com/cgi/generic/doxycyc_ids.htm.  Also my doc here said it would  "most probably" have treated any gonorrhea (and many other common STDs) I might have had but that it would not necessarily have been 100% effective.  I dont think it is a 'gold standard' treatment.  I understand that other drugs are much more consistently reliable which is why they are the ones that Health Departments etc routinely use.  Obviously, I realise that me having 'played doctor' in this has been very far from ideal.  In fact, writing everything down here has made me realise just how 'hit and miss' it's all been.  If it has been something resistent or for which doxycycline is inadequate then I will have had something in my system all this time.  I hope it has been just something like that.  That sounds somewhat more plausible now...its just that this generalized lymphadenopathy seems bizarre as a manifestation of any common STI which has been improperly treated (if that is what I had in the first place!).  I really hope that you are getting warm re this possibility though. Thanks very much indeed for your thoughts.  I know this isnt a doctors' forum but calm and reasoned observations from other people are very helpful given my present state of anxiety.  Please keep wishing me luck. Very Best Wishes.

Offline RapidRod

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #13 on: January 08, 2007, 04:38:37 AM »
Did you go for a swab test after you took the Doxycycline?

Offline baires

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #14 on: January 09, 2007, 04:49:05 AM »
The result of my ELISA was NON REACTIVE.  It's many months since I started to have this problem with the nodes and about 8 weeks since my last (low risk) exposure. I will have a routine HIV test again later this year but I'm no longer concerned about HIV infection.  Obviously, something has been happenning with my body and I need to get to the bottom of it.  The doc is continuing his investigations and I get a very long list of other blood results and x-rays on Thursday and am getting a full STI check also.  I hope that its nothing serious but feel calmer now having at least eliminated HIV as the cause of my symptoms. Ironically, today whilst we were waiting for my results I noticed that my posterior cervical (back of neck) node had started to go down very noticeably - maybe the antibiotics have just taken a long  time to take effect, also Ive had NO exposures or possible re-infection recently.  The other nodes havent changed though.

I hope that having shared my experience here it will at least serve as a reminder to people that even ostensibly 'red-flag' symptoms like mine can have explanations completely unrelated to HIV.  Also, that in their efforts to avoid HIV infection people dont forget to properly check for and treat all the other far more easily transmissible STI's which are out there and which dont always have obvious symptoms.  This experience has also made me reconsider my approach to safer sex in that I now know that Im not comfortable with and dont want to run even the low risk of letting other men come in my mouth.  I read recently that in the city I live in at the moment the HIV prevalence rate in the population as a whole is less than 1%.  However,  among 'men who have sex with men' it has been estimated as at around 25%.  Many unfortunately arent even aware of their status either - so the chances of having a real exposure to HIV are statistically high and its very important to be SURE of the level of risk you are prepared to take.       

Ann, Andy, Rapidrod.  I really appreciate the time spent and the effort you all made in responding.  It helped calm me and helped me to not lose sight of the other possible explanations for my symptoms when in other quarters the emphasis was put (I'm now thinking) a bit too strongly on HIV - thanks very much to each of you.  Very best wishes and good luck with the site in 2007 and beyond. I look forward to the day when the trillions of dollars being wasted on these wars and killing in Iraq etc get spent on medical research so that we quickly reach the point where the amazing progress of the past 10 years in HIV treatments becomes nothing more than just the first small step towards finally eradicating this virus. Suerte!

Offline Ann

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Re: Oral Sex and frottage. Persistent Generalised Lymphadenopathy (PGL)
« Reply #15 on: January 09, 2007, 07:12:50 AM »
baires,

Good luck in finding out what is really going on. I hope that along with examining your comfort levels surrounding safer sex, this incident also makes you think twice before self-diagnosing and self-prescribing. That's a recipe for disaster.

Make sure you always use condoms for intercourse - and use them correctly - and you will continue to avoid hiv infection. It really is that simple! If you haven't already, please check out the condom and lube links in my signature line so you can use them with confidence.

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

 


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