Log file lichen429 for
Chat room Dental_Study_Club
-- Log on lichen429 started at Wed Apr 29 15:53:09 PDT 1998
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plemons Hi 2sweet - Welcome to the discussion group. My name is Dr. J Plemons. Do you have any questions?
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Ted What exactly do we do on this chatline? I'm a novice
2SWEET hi - this a first so i'm not sure how this works
plemons Ted, I'm a novice too! Any questions?
Ted Looks like we're all learning together?
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2SWEET : )
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2SWEET is this specifically for oral lichen planus?
plemons Blanche - Welcome to the discussion group. What questions do you have?
rees Type HEREHi, this is Dr. Terry Rees. As you can see the chat room is open to do whatever would be helpful to those of us on board. Maybe Ted and 2sweet you could start by telling us if you have lichen planus or just what your interest is.
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Ted I have had LP for about a year - getting real tired of it. Topical treatment has worked on skin problems, but there seems to be little that can be done with Oral LP. My Oral Surgeon has me using a Lidex ointment suspended in a cherry-sweetened (just slightly) syrup. Seems to be working, but I would like to get rid of the whole thing alltogether. What have other participants tried?
2SWEET yes i do - it started about 7 months ago
burkhart Hello and welcome to the discussion group. We have received many inquiries since our last meeting and we are trying to accomodate everyone as quickly as possible. We would like to call your attention to our new "fact sheet" on the page. This sheet will serve as a source for any new information that is placed on the page. We hope to have continuous new health-related info for all of you. If you should discover an article, research, news items that you believe will be
rees 2 sweet, are you uder treatment? if so what are you using?
2SWEET it is quite painful - especially my gums - and i was on steroids
carnbo I have read a report on someone taking Co-Enzyme q10 and their lp subsequently cleared up, any information?
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burkhart Kitty or Ann, How are you?
plemons Ted, we find that gels tend to work better as a vehicle for delivering medications in the mouth. Have you tried Lidex gel?
2SWEET i've never heard of that
Anne I am in one of my trauma periods, bleeding gums, pain, not much reaction positively to Lidex gel
Blanche Blanche I want to know what part Lichen Planus play in Irratible Bowel Syndrome?
Ted That's exactly what I have been using - slightly sweetened to make it taste better - Lidex gel . . .
2SWEET where do you get it?
burkhart Anne, I am sorry to hear this-can you associate the current problems with anything?
Ted My oral surgeon found a pharmacist in the area that was willing to try and formulate it
Ted I live in So. Calif - if you need information on pharmacy, let me know
Anne Once again, stress. And of course, my vaginal LP is worse also. They react in similar ways.
Kathy Type HEREI've had very good results using Decadron and Fluocinonide gel.
2SWEET thanks - I'll ask my doc first
plemons Ted, there are some stronger topical preparations such as diprolene, temovate and ultravate. Short term systemic therapy is also beneficial, but you have to be careful if you have hypertension, diabetes or peptic ulcer disease.
burkhart Ann, what are you doing for the lichen at present?
Anne Hummm, I have just discovered I have an ulcer.
Ted My doctor wants to stay clear of systemic stuff - thinks that conservative approach is better because of side effects
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Anne The regular Lidex gel for oral, temovate ointment for vaginal
burkhart Kathy, How long have you had oral lichen planus?
2SWEET has anyone tried dexamethasone - or prednisone?
carnbo My wife has LP, she has been on anti depression pills since December ansd has not had an atteck since. Is this related to stress?
Ted Is there a stomach-connection to LP?
Kathy 20 years, but it has only been active for the past 15 months. It is mainly on my tongue, sometimes on my cheeks and gums.
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rees Blanche-As far as we know lichen planus does not contribute to irritable bowel syndrome. There are however a few reports that suggest that patients with various types of bowel conditions may develop lichen planus. We have not found that association in evaluating more than 500 patients with oral LP
2SWEET does anyone have diabetes?
Kathy This all seems so strange. I too have an ulcer, had a 3-month bout with colitis, and am now on an antidepressant.
Ted Is there any internet resource that keeps current on LP research/treatment?
Ted I download articles quite often, but many of them are too technical - some are not even available except to the med. profession.
rees Ted- there are several including one from Vanderbilt medical school . Just search under lichen planus
burkhart Carnbo, stress is really subjective and what is stressful for one person may not be for someone else. In addition, everyone uses different coping skills in trying to deal with situations-some are more healthy than others. We do see many more patients who have gone through stressful periods when they appear clinically.
Kathy Up until my LP became active, I have been a very healthy person. I hadn't had a cold or flu for 10 years.
plemons Lichenoid reactions are sometimes seen in patients taking medications for diabetes mellitus.
2SWEET i've been a type 1 diabetic for 13 years and have had oral LP for about 7 months
carnbo The point is that since she took anti deppresants she has not had an attack in 5 months
Ted Same here - since I started megadoses of Vitamin C, I haven't had any colds, bladder infections, etc. . . . but now the LP has appeared. Is it possibly related to "Vitamin C Rebound"?
plemons 2sweet, Have you changed medications recently? Are you using insulin or oral medications?
rees Who asked about diabetes? Several studies have been conducted to search for a relationship between LP and diabetes. So far that has not been confirmed. We do find, however, that several of our patients are diabetics. The curent theory is that the LP may be a reaction to one of the anti-diabetic medications.
2SWEET insulin
2SWEET no new meds
Ted What other medications could be suspicious?
Kathy Does anyone else see a connection between a LP flare-up and using Advil?
Ted Very interesting . . . . I, too, became an Advil junkie recently . . . have had to quit it recently because of stomach irritation.]
rees Ted- there is a fairly long list of medications associated with oral LP in some people. They include meds for high blood pressure and non-steriodal antiinflammatory agents of which Advil is one.
burkhart Carnbo, That is interesting! Has she had traumatic life events, always had anxiety and what is her past history? What type of lichen does she have? Any skin lesions?
Anne I keep wondering if tylenol has caused some of my problems.
burkhart Anne, Why do ask? How many do you take?
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plemons Kathy, lichenoid reactions are seen with many medications. If you think there is a correlation with the onset of your lesions, I would try going off the medication with physician consultation when necessary.
Anne I asked because of the advil comments. I took them for headaches--not an unusual amount.
Anne Are there any known homeopathic remedies that help?
carnbo She has had Oral LP for around 3 years with flare ups aroun once per month, treatment is steroid spray. She is a nursery nurse for deprived children (high stree job) but as I say no flare up since on anti deppressants
burkhart Anne, what about the vaginal lesions-did you have the oral and vaginal at the same time?
Anne Always, yes.
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Ted I took 2 Advil per day for months . . . and thinking back, it was during the time I had my LP flareup. Is Aleve the same type of medication?
2SWEET I haven't found any connection to any medication - I just can't seem to get rid of it - has anyone had luck getting this under control?
2SWEET or does it just come and go as it pleases
rees Lets regroup for a second. Remember, that it is important to have an established diagnosis for LP. That is best accomplished with a biopsy. Once you know you have the condition, a reasonable successful topical treatment should be tried. If you respond well to the topical then medications are probably not involved in the etiology. If you don't respond well, then discuss possibly changing medications with your physician. You should know within a few weeks if that
plemons Ted, Alleve is a non-steroidal antiinflammatory like Advil.
2SWEET exactly what topical?
Ted Skin leisions have gone away with topical Lidex application (plus Mentax at the same time) And the Lidex gell seems to keep the desquamative gingivitis in the gums under control . . . but doesn't get rid of the LP
Kathy Is there any non-sterodal antiinflammatory that we can use?
Ted HOpe so
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Kathy Does there seem to be any connection between active LP and hormone levels -- as in going through menopause?
Ted If this is stress related (and I have a hard time believing that in my particular situation that stress is the main component) is there something natural that can be used . . . . St. John's Wart? Something else?
burkhart Carnbo, you may want to know that she may be more likely to get a fungal infection in combination with an antidepress. medication. If this should develop, her practitioner will be able to treat her with a medication to stop the infection.
2SWEET ted - what is desquamative?
plemons Most patients with intraoral lichen planus are not having the drug reactions, so most can use medications as would a person without the disease. I would be suspicious only if the lesions coincided with any new medication and if the lesions did not respond to therapy.
rees 2 sweet- We usually prescribe Lidex gel to be applied 2-4 times daily. That is often quite successful. If not, we usually change to a stronger topical corticosteroid, brand name Diprolene or Temovate. These are the strongest topicals available and you should be monitored by your dentist or physician for any side effects.
Ted Is there much research being done at this time - my research shows a lot of stuff 10 years ago or so - seems like there is very little current research.
Ted 2SWEET - it's the term my doctor used to describe my inflamed gums
Kathy Any comments or thoughts concerning taking progestrone to help control LP?
burkhart Kathy, we do find LP more often in this age group. Also, some additional mucosal disorders appear more common in post menopausal women.
carnbo I'm not sure what you are getting at. She has been diagnosed with LP 3 years ago, but only went on anti depressnts 3months ago. Are you saying she may NOW develop afungial infection in addition to her LP
Ted From what I read, the fungul-LP connection is pretty strong??
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burkhart Kathy, we do not know about any current studies? Why do you ask? I will search the literature for new developments.,
Ted This is completely off the subject, but is there anyway to save the conversation stream while participating . . . it is very difficult to read, write on screen and take notes at the same time!
2SWEET what is so frustrating is that I have seen an oral surgeon, an ENT and 2 internal med. doctors - none of them have known the first thing about this disease
Anne What is the strength of the diprolene if Lidex gel does not work?
Kathy I recently listen to an audio tape by a Dr. ? Lee who mentioned applying progestrone to your face could help control LP breaking out.
burkhart Carnbo, no we are not. It is just something to be aware of and this probably will not occur.
rees Ted- there is a lot of research under way especially in an effort to understand the cause of LP. As you know, one of the frustrating things about the condition is that we don't know why it occurs. We do know that it may be an allergic reaction in some instances and avoiding drug , toothpaste, mouthrinse or other substance causing the problem is usually quite beneficial.
plemons Anne, we prescribe diprolene .05% gel.
rees Ted- a transcript will be available. Aupton will tell you how to request it a little later I think.
Ted Rees - I have read that substances used in dental work can sometimes be to blame - I have had two crowns put in during the past year.
2SWEET I have had a lot of dental work also
2SWEET i had a bridge done right before this started
carnbo She should be taken off the anti depressants soon, so it will be interesting to see in the LP flares up again, if so I will let you know.
Ted Unfortunately, when something like LP comes along, you can go nuts trying to relate it to some recent event . . .
2SWEET does anyone experience pain?
Anne Yes, my gums hurt and bleed.
LRBoren Yes, periodically.
rees Ted- Yes, sometimes patients are allergic to one of the components of dental restorations. Usually your dentist can determine whether or not to be suspicious of that by the location of the LP lesions. Remember, this is a relatively rare association but those of you with recent dental work should probably have that evaluated especially if the LP started about that time.
Ted Mouth pain . . . oh yes. Up til this week, I could not brush my teeth without the gums bleeding!
carnbo 2sweet - My wife experiences extreme pain in a flare up
2SWEET mine too - feels like a wire brush instead of a tooth brush
Ted Just a few days with lidex gel really helped with bleeding gums . . . got rid of that metallic taste, too.
burkhart Carnbo, Yes, and please keep us posted about her progress. Antidepressants are used for the treatment of several other oral conditions also. It seems that many people have extreme pain with erosive forms of OLP
Kathy There seems to be a vicious circle here. I was on prednisone for the LP, it caused weight gain which caused my depression which caused me to be put on the antidepressant. Now are you saying I can expect the LP to get worse again?
2SWEET it upsets me that no doctor has ever even mentioned this drug to me!
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LRBoren Some of my gum pain has subsided with a salt mouth rinse.
Ted I'm sure many of you have had the same thing happen . . . my Dentist looked at my gums and said, "Gee! I've never seen anything like THAT!!!!!" Real comforting . . .
burkhart 2 Sweet, what drug?
2SWEET the Lidex gel
2SWEET or the dipolene
Ted LRBoren - I also noticed that the gum pain subsided when I had to use salt water rinse after biopsy
carnbo Most of the disussion here seems to be about gums, what about the toungue?
2SWEET no help with salt water
Ted But the flareup continued - bleeding continued after I stopped using salt water rinse.
2SWEET I've never had it on the tongue
LRBoren Me either
Anne nor have I
plemons It's pretty common for people to say that they have been to several dentists and physicians for their lesions with very little help. Unfortunately, intraoral lichen planus falls into a gap between medicine and dentistry. It is actually a medical condition that affects the mouth. As a result, patients have a hard time finding someone to help.
Kathy Mine is on the tongue.
2SWEET is it painful?
Kathy Very. It is raw when it flares up.
rees Cambo- The tongue is involved sometimes usually on the sides but it can be on the top too. Tongue lesions tend to be ulceratied and painful but fortunately not always.
Kathy I went for five months with my tongue completely raw until I found a Dr. who knew what it was and what to do.
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carnbo Kathy - is it in the form of white ulcers when it flares up and is it on the side of the tounge?
2SWEET I have ulcers on the inside of my cheeks and below the gums sometimes
burkhart Bama, Welcome-what questions do you have?
Ted When I consulted a dermatologist for flareup on my feet, he treated it as fungus . . . even with the biopsy (oral), he is not convinced - should I look for a dermatologist that knows a little more about the condition?
carnbo Katy What did he do?
Kathy It starts as mainly white patches and then gets dark red and raw. It is on the entire surface of the tongue, not on the sides.
2SWEET I also get blister sometimes - anyone else?
rees Ted- remember you can get fungal infections of the skin and it is certainly possible to have two different things underway at the same time.
Bama What is the latest research showing about LP--treatment and causes? Anything??
Ted Rees - If I already have OLP - mainly on inside of cheeks and gumline - am I also apt to get LP on the tongue?
Kathy I am fortunate enough to live close to Indianapolis where I found the most wonderful dr. in the world, Dr. Susan Zunt at the IU School of denistry. She put me on prednisone and it cleared up right away. However, whenever I went off the prednisone the LP returned. I find using Decadron and Fluocinonide gel does a very good job of clearing it up.
2SWEET God - 2 more I've never heard of!
Bama What is OLP?
Anne what strength fluocinonide gel?
Ted Sorry - Oral Lichen Planus
Bama oh
Kathy I too seem to have a lot of fungal infections around my mouth.
rees Ted- Thats a possibility but the gums and cheeks are affected far more often. Sometimes the lesions move around but there seems to be a tendency for them to recur in the same sites over and over.
Kathy The Fluocinonide gel is .05% and the Decadron is .5 mg.
Bama Mine too..
Anne is the decadron a gel?
plemons Unfortunately, topical steroids can encourage the growth of yeast in the mouth by changing the normal flora or combination of organisms that grow there. Many patients need antifungal therapy during treatment of their lichen planus.
Ted Plemons - what type of antifungal therapy during treatment of LP?
Kathy No, it is a liquid. When I am at my worse I use the Decadron four times a day; swallowing it twice a day and spitting it out twice a day.
rees I hope you will get the transcripts from this discussion since several of the more recent questions have been addressed somewhere in the text.
Bama From what I have observed..it seems like LP is a very general term for a condition that is so different for every individual...we all seem to have several similarities...but more differences!
Bama Is that what you are finding in your research?
plemons Ted, nystatin oral suspension works well. It is a rinse that is used three times a day. There are also lozenges called Mycelex and a pill or systemic medication called diflucan.
burkhart Bama, we really do not know what causes OLP, but the condition has many different forms. Often, a patient may have several different things going on that are causing problems.The tissue can be white or erosive (red) in nature. The lesions appear and may go in remission. Please view our fact page for details.What type do you have?
Bama Oral LP
burkhart Bama, where and for how long?
Bama Inside cheeks...about 5 years
rees Kathy-Rinses are effective for many people. Remember though that the material will be more effective the longer it stays in the mouth so when you rinse and spit or swallow, wait about a holf hour before you drink or eat anyting or brush your teeth.
2SWEET has anyone been given prednisone?
Bama no
2SWEET tablets
Kathy Yes, I have been on prednisone.
burkhart Bama, what treatments have worked for you? When does the olp occur?
Ted All of the preparations I have taken or am taking have treated symptoms . . . is there any actual treatment of LP?
2SWEET that's my ? too
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Bama Nothing is a sure thing concerning treatment for my LP..but the Lidex gel does seem to lessen the severity
rees Ted- you hit the nail on the head. At present we treat signs and symptoms. Thats why research to determine the cause is so important.
Kathy When I use the Decadron I hold it in my mouth for 2 minutes.
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carnbo I'll ask again in case anyone missed my input. I have read a report about someone who had oral LP and went on a course of Co-Enzyme Q10 and they claim that their LP cleared up, I wonder if anyone elsr has any info on this. the doze appears to be 100mg
rees Kathy- good but remember not to rinse with anything else for a while afterwards.
Bama Hmmm..never heard about that..
plemons Ted, most of the medications cause remission of lesions. In general, lichen planus is often a recurrent disease - one controlled but not cured. The lesions come and go, and therapy is necessary when lesions are present. The goal of therapy is to reduce the number of flare ups and have them last a very short period of time.
burkhart All participants: Dr. Rees will be placing a short article on the page very soon about applying medications to the tissues.
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Kathy What is this Co-Enzyme Q10?
Bama Is it a pill?
Ted Has anyone ever tried to develop a chewing gum with lidex? It seems as this vehicle would keep the medication in the mouth for a long time.
Bama yuch..the taste..!
2SWEET i used Dexamethasone - a mouth rinse - anyone else? Ted sounds like a good idea though
rees Cambo- Co-Q 10 is one of thoe products about which claims have been made but no studies done. The bottom line is that there is no evidence that it is effective and none that it is not.
Ted bama - that's why my pharmacist adds cherry syrup to the lidex ointment . . . not bad at all.
carnbo Kathy I'm not sure myself, but I have some info, I could e-mail it os send it to you
Anne Yes, I used it and it helped when I was on it. Once I stopped, symptoms bad as ecver.
burkhart Ted-Interesting! Dr. P. and I think that might have potential, however chewing gum often causes trauma.
Kathy That would be great. The more info the better.
2SWEET anne- the dex or the Co-Q
Bama What do you mean.."chewing gum often causes trauma"?
Anne dex
2SWEET my LP came right back after I got off it too
burkhart Bama, the patient may have lesions which would make chewing gum difficult.
Bama thx
Ted What exactly is Co-Q?
carnbo Kathy If you want the info, I logged on her and gave my e-mail address. Imnot sure how to send you the info, can you e-mail me first?
rees I am interested in knowing from those of you who have used steroid rinses and gels which one you liked the best and which you felt to be most beneficial.
Kathy Sure, but how do I get your e-mail address?
Anne lidex gel is the only thing which really seems to help.
burkhart Ted, I have an article on CQ that I would be happy to mail to you. If you send me your address on the page, I will mail you a copy.
Bama Lides Gel
carnbo Kathy my e-mail address is Ian@ianthomson.demon.co.uk
Bama Lidex i mean
rees Ted- Co-enzyme Q 10 is supposed to be an enzyme with anti-inflammatory properties.
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Ted Great! I have your e-mail addres, so I will contact you this evening.
carnbo My wife has found the steroid spray most bebeficial
Anne which spray?
Kathy I found the gel worked when the LP was not real bad, sometimes keeping it from getting worse. When it is bad, I use both and it clears up within a day or two.
Bama What steroid spray?
Kathy My e-mail is Wkkvaughn@aol.com
carnbo kathy, this evenin for me is one in the morning, make it tomorrow
2SWEET does it stay away after stopping treatment?
Bama No
Kathy OK
2SWEET so - do you all stay on the Lidex gel all the time?
burkhart All participants: Have any of you noticed a problem with any food groups or additives?
Kathy Mine will usually seem to stay cleared up for about 4 days, then it comes back.
carnbo Bama - I don't know but I will find out, you have my e-mail address in this transcript
Kathy Garlic seems to really set mine off.
rees Bama- I think we probably should't get into that tonight. Some sprays are effective but no more so than the gels and they have to be used strictly according to instructions. If you would like to know more about them contact us by E-mail and we'll talk further.
Bama I use the Lidez once in the a.m. and then beofre going to bed
aupton FYI, folks. If you entered your email when you logged in, anyone selecting your nickname, then clicking the 'User Info' button will see your email address.
Bama Spicy foods, minty things..
2SWEET toothpaste
burkhart Bama, do you notice lesions immediately after eating these foods?
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Bama no..the existing spots burn...
LRBoren Mint, Listerine, ascorbic acid, cinnamon
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Bama ascorbic acid never bothers me..
Kathy Mine too with spicy foods but not mint - only mint toothpaste really burns. My tongue will start to get raw the day after eating spicy or garlic.
rees 2sweet- Remember that some toothpastes may even cause LP. As a general rule you should avoid any dental hygiene products that burn when you use them.
Kathy I have had good results using Biotene toothpaste.
2SWEET I just started using the Biotene
Ted As long as I use lidex gell, foods and toothpaste don't seem to bother me.
aupton The Doctors will be leaving in about 5 minutes, everyone. Please start signing off. I'll leave the room open for about 10 minutes after the session. Thanks for your participation, and a transcript should be up in a day or two.
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LRBoren Is it possible that Listerine might cause LP then?"
burkhart Participants: Did you notice this only after the first episode of lesions?
Kathy Yes.
Bama yes
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LRBoren yes
Ted Thanks . . . just having a connection with someone who shares the same problems has helped a great deal!!
rees LRBoren- We haven't seen that but we have seen patients burn their mouth from using listerine excessively.
carnbo Final word - anything with acid content E.G. white wine or itallian tomatoe sauces seem to set it off
Kathy I agree. No "normal" person has ever heard of this disease. It helps to know you're not crazy too.
Ted Wow . . . does it ever!
LRBoren cambo--that's why I mentioned ascorbic acid, maybe just the acid then
Kathy Thank you for this chat room. I'll be looking forward to the transcript.
rees Thanks folks. We appreciate your participation. We'll do it again soon. Bye
Ted People keep asking me how I get a disease from a rock . . . Lichen, you know . . .
2SWEET Thank you all - it has helped a lot!
Bama To all...we have formed an "informal" group and anyone is welcome to join us..we e-mail each other and just generally support each other
Ted How do we join?
carnbo How do I get a transcript?
Bama Just e-mail me.
burkhart Thank you all for particpating tonight-we enjoyed this as much as anyone-it is very rewarding to know that we may have help some you by listening and offering what information we could. Please do not hesitate to contact us before the next chat room.
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burkhart Ted, this has nothing to do with a rock-just lacy in appearance.
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-- Log stopped at Wed Apr 29 17:04:20 PDT 1998
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