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Im glad you posted back kobe as I have mostly read your posts on this site i've ordered the 0.025% aswell but can take upto 16days to arrive. Im currently using anti-sebum I know every1 says its a scam but since I already paid 4 it might aswell use it. Was using blistex aswell not the 1 in the blue tub though and I think it was making it worse. I bought the blue tub but haven't bothered using it yet. Have you tried Apple cider vinegar? Also are you just applying the tretinoin over your whole lips? And are u using a alpha hydroxyl agent? If so where can I get alpha hydroxyl agents? And how would I apply them? Would be great 2 hear back from u
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...repost of my MAY 9 post which got flagged / deleted... I edited email / URL this time as I figure this is likely what got it flagged

===MAY 9 post===
This is a repost of my last post in the medhelp  forum... the thread over there is - you guessed it - "Fordyce's condition". My username on that forum is Keep_On_Keeping_On. I've gotten through two threads leading to here tonight, and some 20+ pages discussions. If you've gotten this far and are reading this, then you're one of us and need to post. Not only do you need to post but you need to create an account. Someday a doc is likely to try and put 2 and 2 together, and the "guest" replies aren't going to make it easy on them. I don't think emails are banned, you can reach me at "XXXXXXXXX" [EDITED to not get moderated - do msg me on here and I'll shoot you the email]  and even though this is a secondary account, I'm sure to come back there because of this shaming condition. Kobe, feel you man, props for the long struggle.
<my repost follows>

I'm a 30 yo man. I have the dots too. They look EXACTLY like Fordyce's spot but aren't, I can claim the same progression of the condition as previous posters: 
In september of 2010 I had sex with a girl who was a little aggressive and bit my lips too hard / ran her tongue deep in my mouth. I had what I would consider sore in my roof palate a few days later, that I attributed to my eating extremely hot/spicy noodles, but it might have been that my sensitivity was accentuated due to the condition morphing. The next couple of weeks my lips went through extreme dryness and peeled continually, particularly the upper lip. At the time I attributed it to the harsh dry climate conditions (tibetan desert.) 
A few dots showed up. I looked it up and found out about Fordyce's spots, thought of it no more and figured "hey I'm getting old, it happens." They aren't the first thing you notice, but on closer inspection they are clearly there. They appear to form an under-layer directly under the surface. They appear clearly when stretching the lips. Furthermore they appear in the inner cheek layer in my mouth, where the dark red / clear white contrast makes them more obvious. 
Disclaimer: I had genital HPV before this. I'm looking into those white spots and believe the OP when he says this is an underlying CONTAGIOUS disease. My theory is that skin has to be broken for this to take root in the inner membrane of the mouth. My fear is that it might slowly spread to all of one's skin, adding rough patches. I am calling it contagious because this is a condition which I was entirely clear of prior to it showing up. It is a rather extreme change from a "always healthy" upper lip to one that looks like it has been exposed to a dry wind for 2 hours continuously. Add to that the awkward looking white patches on the lip (that if stretched are made of white dots) and I'd rather it have the "dry lip" look than the more noticeable "hydrated but visible patches on lips" look. 

To doctors and others who are like me doubting their condition: 
AIDS was unheard of until 1981: New diseases can be discovered even NOW that no doctor have a prior knowledge of. Share your story with others, append your experience, and only when enough have done so will we have people actually pay attention to the issue. If you are a doctor, ask your peers about the condition.

<end of the repost>

I'm at the stage where I am considering this a dermal condition close parent to HPV or HSV-1 with transmission occurring similarly to its cousins (minor tear in the skin + contact) and a progression of the condition throughout the dermis with notable visible spots of infection being the soft membranes such as inner cheeks, upper lip, and genitals. I believe Fordyce's spots appearing are only a side effect of a different affliction, one that simply grossly enables the spots that normally would not show (which explains cultures not showing up anything but fordyce's). I don't know what our condition entails, but I know that together we can pool our knowledge, experience and voices so progress can be done. I encourage you to post, email me if you have found a place on the web that might interest me of where my posting might help others.

Life is a giant cosmic joke, Stephen Hawking went through it in a wheelchair, I'm sure you can learn to cope with whatever is bothering you right now.
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personal evolution
Pre 2010: incredibly healthy lips till major peelings for a week during visit to tibet summer 2010
Fall 2010-apr 2012: I might have noticed very minor white spots at the very corner of the lips
April '12: sudden flare of lip and appearance of a white "layer" where the lips meet. might be due to my heavy sweating for the first time in over a year due to trying to exercise again / run.
May-June2012: panic searches / posts / try. I have left side of my upper lip stabilize as puffy with distributed granules through. a few white spots middle front of lip (no significant swelling), and a cluster at the somewhat regular sized right side (which looks round, and doesn't help). Saw a dermatologist that validated Fordyce and prescribed protopic ointment (not covered / $165 ouch).
July '12:  Used Protopic (immunosuppressant / used to decrease swelling) for two weeks twice a day and thought I saw a little reduction in the inflamation of the left side of lip. Started seeing white granules on lower lip, worried that it might be linked to Protopic stopped for two weeks. Hot day today, upper left lip looks swollen, restarting Protopic, will hold it for a month. Fordyce on lower lip too now.
Taking pictures of it regularly with phone - looks gnarly!



I've re-read previous threads here and there today. Fox-Fordyce & fordyce spots two sides of the same coin?
would fordyce spot be an obtrusion of a sweat/salivary duct propagating through the distribution channel / duct? It sure seems so for me inside cheeks to lip. 
Could a corticosteroid injection be an option to get rid of lumps / regulate tissue? Anyone has any experience with that? thinking "kenelog" injection.... What about triamcinolone creams?

I thought there was a post mentioning an anti-cancer injection in the lip that worked for one guy... but can't seem to find that post now. 
Again, PLEASE take the time to create a profile and speak up - don't hide behind an anonymous posting - that way we can send messages and support each others => message me if anything or just to get in touch!



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Interesting post I noticed the spots on my upper lip just over 3 weeks ago and everyday I look and it seems to be spreading to my bottom lip quite rapidly. My top lip is covered most of the lip just looks white but above the whiteness and in the middle of my top lip you can clearly see that it is spots. There are tiny spots on my bottom lip which like I said are getting larger by the day! Im using I've Anti-Sebum cream/gel for 3 weeks now and it has not gotten better or stopped the condition from getting worse :( Is it worth me going to see a dermatologist?
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Kobe how is the tretinoin 0.025% working for you? I have been using it since Thursday 26/7/12. It will be 1 week tomorrow. It looks like it is still spreading on my bottom lip. Just wondering if you had noticed any improvment? I've also started using blistex lip medex (in the small blue tub) today to keep my lips nice and moist as they was drying up slightly. Have you ever taken/considered taking accutane? This can have some harsh side affects but alot of people claim that whilst on a course of accutane there SP dissapeared but no1 ever specifies whether its on there lips or d*cks. They also never specify how long a course they was on and what strength/ how many times they took daily. They also claim after they stop the accutane the SP re-appears I think people could have prevented this from happening if when they came off the accutane they continued to use tretinoin cream/gel on the area.  Has anyone ever heard of  ASC-J9?
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sup guys, so far i havnt noticed a difference with the tretinoin cream. i apply it at night b4 i sleep. i got it from amazon for like $10.

havent tried accutane cus i did hear that its harsh.

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It will be two weeks on Thursday since I started using the tretinoin 0.025% before bed and still nothing if anything it still getting worse. Kobe are u using any AHA along with it? I might try a course of accutane when I get really desperate. But I hear you have 2 be monitored whilst on it (blood tests and things)
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Kobe, I have read all of these posts and really appreciate your input. Its definitely frustrating to hear that nothing has helped. Is there anything that has at least made them less prominent for you. At this point, I would be happy if they were just less noticeable.
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Well I have been using tretinoin for a month with no affect but I made the mistake of buying from an online pharmacy. I bought 2 tubes identical from 2 different online pharmacies and the contents of the tubes smells and looks different. Thats the problem with online pharmacies you never know what your getting! As far as making them look less prominent goes, I find Shea Butter helps but it makes your lips looks shiny and a bit girly so it's the old catch 22. Also my lips are quite a pale pink anyway. Hope this helps a little.

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Yeah, I jumped the gun before I fully read everything and ordered jojoba oil, a scrub, retinol and a tretinoin cream online.  I am almost thinking that going back to the dermo and telling them I want the prescription tretinoin would be best outside of laser treatment.

I have also come across tinted lip balm from Burts Bees and if it gets worse, even tattooing the section to match the color of my lips.  Both options are not cures.  So F*ing frustrating!!
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Also, what causes these things.  I understand its a build up of oil in the sebaceous gland but what causes the oil to build up?  Im 31 and have never had these until six months ago.
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Hey dmdrak does the tinted lip balm from burts bees help cover it up well? Can you tell me exactly what the product is please. I have a doctors appointment on thursday and im going to try and pursuade him to prescribe me Tretinoin as basically there is no dermatologist where I live. I've never heard of tattooing the section but I suppose it's an option. Mine is getting worse all the time maybe because of all the apparent tretinoin iv'e been putting on it? I have no clue what causes the build up. I never had these until two months ago and it's just getting worse like crazy. Driving me mad. Apparently Vitamin A helps reduce the the production of sebum but I have been taking Vit A everyday for about 2 weeks and still getting worse! It's so frustrating how do they not have something to cure this.
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I feel ya!  I'm calling my dermatologist today to see what they think about the Tretinoin but I definitely do not want to make it worse. The first time, he told me the same thing everyone else's dermo said "its benign and only cosmetic, dont worry about."  I just sat there and said "really???"  I just dont understand if this is caused by your lips being dry or hereditary or your lips being overly moisturized.  Am I supposed to keep them dry like a cold sore or apply lip balm like crazy???  Who knows!

For the Trentinion, you are using a online one right, not a prescription, do you think thats why?  I should be receiving the burts bees tomorrow, its called: (and by no means am I promoting it, but I will definitely let you know how it is, I also ordered the pomegranate one that is reddish in case those are too girly.) And then again, its not a cure.

http://www.burtsbees.com/natural-products/lips-lip-balms/tinted-lip-balm.html

I'm basically at a loss, I really don't want to start experimenting on my lips and make it worse.  I have ordered retinol, a scrub, jojoba oil, lactic acid peel and a tretinoin peel online but am scared now to try any of it, especially the needle/paper clip method of burning them off.  I started drinking a ton of water because that helps with acne.  I also started taking a multi-vitamin and b vitamin religiously, that's all I have done so far.

Im starting to think the only cure is the CO2 laser with multiple trips and then taking the tretinoin so it doesnt came back.  From what Ive read, it comes back sometimes and if it does, its not as bad.  
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This is DMDRAK

Has anyone tried popping these bastards?  I have them covering my right and left side of the upper lip about half way down and then I have about twenty random spots.  I dont want to make them worse but it would be nice if I can at least get rid of the ones that are all by themselves.  These are just oil glands that cant get through the skin right??  Plus the redness of popping a zit wouldn't matter because your lips are obviously red.  And FYI, I bought pomegranate lip balm from Burts bees...doesnt help to cover them up but the moisture is nice.

Have a appointment with my family doc monday, we'll see what she says, also have a call scheduled for the anesthetist at the dermatology center.  fingers crossed!  Maybe I will grow a mustache. 
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sup guys,

im not currently using AHA. 3 years ago when i first tried the .1% tretinoin cream i was using i beleive 30% glycolic acid. didnt notice a thing for the lips. Did wonders on my face tho, havent had a break out since i used it for a couple months. be sure to read the instructions carefully if your gonna use acid. it can burn/scar you.but its pretty safe unless your an id**t. i lost my bottle so ill most likely buy another one n try it out again.

 

about the needle/paperclip method..it pretty much comes back %100. i notice when its hot my lips get darker and the spots appear to stand out more. so im using burts beeswax to cool em down. so far thats the best thing that works for me. popping them wont work either. they go away for a month then surely start to come back. by 2 months they are completely back.

 

 

 

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