Transcript feb2002 for #Dental_Study_Club

Log file feb2002 for
Discussion room #Dental_Study_Club



.............. Log on feb2002 started at Thu Feb 28 06:08:39 PST 2002 ...........
Mary any studies being done on genetics re lichen planus?
sz they removed all lesions from my mouth, cheeks, gums, and tongue
Mary sz did they come back?
drburkhart Dr. Thornhill, would you comment on lichenoid reactions
mgoodman did the surgery make things worse and it what ways is it worse
drthornhill Type HEREMary Yes we are carrying out a study right now into the role of particular genes in determining susceptibnility to OLP
sz pathology following surgery identified olp
Rosalie I often get small pin-head sized bumps on the tongue that are incredibly sore, but the
sz YES, it was all back within 30 days
Rosalie ent says that is diet related...not lp
drburkhart Mary, we have as you know, an extensive survey and hope to provide some data regarding the genetic connection. Records were not kept in years past and perhaps the diagnosis was not as clear as today.
Mary drthornhill glad ti hear that. How can I get their progress? They've found a gene for crohn's disease.

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drthornhill Lichenoid reactions to drugs and dental materials appear to be becoming more common. They tend to resolve, but slowely, on removing the cause. Surgery seems a strange way to treat OLP
sz I have significant scarring and my I would like to ask the Dr.s if there is any knowledge of olp causing excessive scarring in the mouth
Mary sz very sorry
Janice Is there a list of foods or medications that should be avoided?
Rosalie My open lesions healed up with a definite white scar line which the ent
mgoodman Can the celebrex if it has affected the mouth, cause the same allergic reaction in the vulva
Rosalie said told him it was achthous ulcers.
drrees Type Hi folks, sorry to be a little late getting on. Dr. Thornhill we appreciate you joining us.
drburkhart sz, any constant irritation on the mucosa may cause roughness and possibly scars related to chronic irritation.

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CS Dr's I live in SC Upstate and wonder if there is any research or docs in this area who I could maybe be referred to?
Mary what is mucosa?

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Rosalie Any doctors in the Kansas City area for OLP

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drburkhart Mary - the tissue in your mouth-your cheek area.
Mary I've quit using toothpaste as of yesterday.
mary Mary try Biotene.
Janice I have FOUND the toothpast answer (at least for me) - Children's Silly Strawberry toothpaste
Rosalie I started using pure baking soda for toothpaste, then switched to Biotene just
sz my scarring is massive thick white bands that have closed my jaw together, the surgeon is saying it is resuling from the olp
Rosalie recently.
Mary Doctors for l.p. in St. Louis area?
drburkhart Mary, we recommend Biotene products. We find that most patients can tolerate these because they do not have the additives that many common brands do contain.

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mary I use both the moutwash and toothpaste and find they work fine without too much pain.
drthornhill Rosalie Major apthous ulcers can cause scarring but OLP tends not to. Sometimes it is difficult to distinguish the two. Perhaps you had aphthous ulcers not OLp
Mary sz maybe your scaring was from that surgery

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drburkhart Mary, we have individuals all over the world that we can recommend. Please contact me after the session.
drthornhill We also recommend Biotene products as les irritant.
Rosalie I have the web-like stryie (?) clumps inside the cheeks. Perhaps the lesions were
Mary o.k.
Rosalie a separate problem from the OLP>
drthornhill Roasalie that is possible
mgoodman Do any of you have it in your vulva
mary Yes mgoodman
Mary no
Rosalie No, thankfully.

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mary but not diagnosed.
mgoodman what does it look like there
drrees mgoodman, it looks very similar to oral lichen

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Mary 2 marys, i'm now maryv
mary I agree.......red and sore.
mary sorry maryv
mgoodman a question to the doctors, could a reaction to celebrex cause it in the vulva
drburkhart mgoodman, Dr. Dore Eisen has been a guest here previously. Be sure to read the transcipts from his session because the material will be very helpful to you. He has conducted research in this area and treats many patients with this problem.
Sunny is the lichen likely to be caused from a n allergy
drrees mgoodman, that hasn't been reported but it seems logical to assume that could happen
Rosalie If celebrex can aggravate OLP, can Vioxx do the same?
aupton For those just joining us, welcome. The doctors are answering questions as they can.
cotita hello, I'm in Mexico. Recently I see a 36 yo patient with white plaques in both buccal mucosas, both were excised, but 15 days later a 3 mm white patche appeared. Any comments on further treatment?
Janice Is there any link to ibprophine making LP worse?
drthornhill Rosalie Vioxx is more likely to cause OLP than celebrex
mary Are you at Baylor working on a message board that we could perhaps use to commicate on this topic?
drburkhart Everyone, if we have not gotten to your questions, please continue to ask. We may have missed them as the screen rolls.
mary communicate with others affected.
aupton Mary, refer questions like that to me privately by email:art@tambcd.edu
drrees Rosalie, I may be answering quesions that have already been addressed but celebrex and vioxs have not been directly associated with olp. They are jujt members of a family of drugs that are associated.
Sunny can you explain lichen planus scelosis
drthornhill Cotita - If the lesion you had were OLP then surgery would be unlikely to resolve them and it would not be surprising for them to return
mary ok Art, thank you.
Rosalie Thanks for that tip, dr.thornhill........should I switch to Celebrex or just endure the arthrisis pain?
Mary maryv Would you please put a list of medicines associated with olp?
mgoodman if you are allergic to the celebrex, would aspirin be a good alternative. Is it possible that one drug will bother you but others in the same class will not
CS I am located in the Upstate of SC and wondered if there is any research or specialist in the area who I could be referred to?
drburkhart Mary, we do have such as list that we send to patients. Please contact us and we will email it to you.
Janice I would really like to see a list of medications that can affect LP.
CS Might Aleve be a problem?
drrees Sunny, lichen planus sclerosus is a different but similar disease which often affects the genitalia and can leave scarring. It has only rarely been reported in the oral cavity.
drburkhart CS, yes, contact me after the session and I will give you some names.
CS thank you
drrees mgoodman,
Mary mvwill do thanks.
sz which type of md would be the best to follow the olp? I have tried dentist, ent, primary internist, which do you recommend?
Sunny Can you recommend a toothpaste and/or mouthwash which would help the condition orally
Mary I hope you have another chat very soon.
mary From my experience (5 years plus) OLP is just something one has to endure......the only treatment is symptomatic. Is this correct?
Rosalie I feel so close to those on this group....I'm not alone with this. Thanks.
drrees mgoodman, aspirin has not been reported to cause a lichenoid reaction. It does have side effects however so consult your physician before deciding to change. Yes it appears that some of the non-steroidal antiinflammatory drugs are more likely to cause the reaction than others.
CS Do any of you have days/weeks where your underside of the tongue is so mad that you can't talk? What do you do for it?
sz could it be possible that the scarring in my mouth could be from lp sclerosus?
drburkhart Sunny, on our link session, we have a link to biotene with a complete list of the products. As we mentioned, Biotene is usually tolerated by most patients.
aupton CS and others, please direct your questions to the individual doctors rather than the group. Thanks.
Rosalie Could any supplements be an aggravation? I take several and
Rosalie have wondered.
drrees sz, possible but not probable, LPS usually only causes small lesions in the mouth.
sz thank you
mgoodman Is there a resource available to find out which anit-imflammortory drugs are worse than others
drthornhill sz true lichen sclerosis of the mouth is exceptionally rare. It is very unlikely this is the cause of your problem

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Riette I had severe LP of mouth and vagina for years before I was diagnosed. I then did my own research and decided tot try large doses of vitamin C which rendered me symptom free in a few weeks. A lower maintenance dose prevented the symptoms from returning but if I forgot to take it for a while the LP would come back and a new corse of higher dose Vit C made it go away again. Anyone who has been diagnosed with LP please try 5000mg + good quality vit c per day for three wee
Riette Thank you.
Rosalie Do you doctors agree with Riette and the vitamin C recommendation?
Janice to Dr's-Would that Vit C ritual help???

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drburkhart Rosalie, thanks for the comment. Support groups stand out in reported data as far as helping patients cope with disease. Many studies support this finding.
drrees Dr. Thornhill, would you comment on the possible role of hepatitis C liver damage in olp?

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mgoodman That is a good question. Are there any vitamin supplements that could be harmful. I take alot
drrees Rosalie, there are no studies to support this.
sz I am doing physical therapy and the pt would like to inject the scar tissue with something to try to break it up, dr,b , do I need to worry about what substance they use so that it will not make the olp worse?
drthornhill mgoodman The anti-inflammatory drugs that cause problems for one person will be different to those casuing problems for others. OLP is caused by drugs in only a small minority of OLP patients
Sunny DrBurkhart.- are there any food or drinks that one should avoid
Rosalie What is the incidence rate for OLP....ent dr told me that in 16,00
cotita2 dr. thornhill. Sorry mi machine disconneted. It was diagnosed by an Oral Path as olp "Atrophic type"
drrees sz, I guess we would need to know what the material to be injected is. Chances are that it has not been associated with inducing olp.
Rosalie patients he only had 15 with OLP....that was 16,000.
mgoodman Dr. Thornhill, is it possible then that the drugs such as celebrex are not the cause, but that once you have it, they could aggravate the problem

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drthornhill drrees Hepatitis C appears to be associated with OLP in a few studies coming from the Naples area of Italy where hepatitis C is particularly common. Studies form other parts of Europe including the UK have not been able to show such a link. So it may be peculier to particular parts of the world or a chance cross association
drrees Rosalie, studies vary but it possibly affects from 1-2% of the adult population.
sz drrees, have you seen anything that links olp with hashimotos?
drburkhart Riette, we do not have any data to support vitamin C and LP recovery. I do believe that an excellent diet helps anyone and protects one from disease. I have taken supplements for the past fifteen years and anything that you can do to boost your overhall health is great! However that includes stress reduction, exercise, and consulting with specialists who will advice you.ll
Janice How interesting - I have hasimotos
Rosalie What are hasimotos?
drrees sz No, but Hashimotos is an autoimmune disease and there may be an association between those kinds of diseases and activation of olp
mgoodman what were the dosages of vitamin c used in the studies Dr. burkhart
drthornhill I agree with drrees comments
drrees Rosalie, Hashimoto's is autoimmune thyroiditis

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sz My primary care and I wondered if the fact they are both autoimmune would link them
Rosalie Could you recommend a vitamin supplement regimen
mary I have read that OLP is probably NOT autoimmune!!! Any comments?
Sunny Dr Thornhill- has anyoine experienced improvement after having mercury fillings removed
Rosalie I have just recently tried a B12 shot.
Janice Would the medication for Hashimotos be a problem for OLP
drrees sz, Some believe that olp may be a form of autoimmune disease but that is not clearly established.
sz I take synthroid
drthornhill sz They are different types of autoimmune disease. Hashimotos is antibody mediated and OLP is cell mediated. Therefore any association is likely to be week
sz thank you
Rosalie Interesting about the mercury fillings - I have a lot of them and frequently have
Rosalie a metalic taste in the mouth.
Janice I also take synthroid - is that on the list of medications one should not take???
Riette Dear Dr Burkhark, I know you don't have any data I am trying to make people with the same problem aware of a simple relatively safe treatment option that worked extremely well for me in case it helps anyone else. LP made my life hell for years and the Vit c repeatedly proved very effective in relieving it. It may well work for other people too and it can't hurt to try given the comparitively small amount of damage vit C can do compapred to convention LP steriod type t
sz It is frustrating that so little difinitive info is out there. I just can't find the professional support
drrees Janice, synthroid seems to be ok. What else are you taking?
mary Any doctor! What about the relationship between age, gender and OLP
Janice Estrogen and provochol
cotita2 Drthornhill: Now I'm Cotita2. The lesions were diagnoses by an Oral Path as olp "atrophic type"
mary seems to me 50ish women make up the majority.
mgoodman Could tamoxifen worsen lichen planus. I am on tamoxifen
Mary i'm 61 but have had it a long time undiagnosed
Marl Dr. Burkhart are you familar with Protopic ointment to treat OLP? I've been using it since Oct. 2001, at first I was using it twice a day now I'm down to once every three days. My OLP has clear at least 95%.

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drrees Janice, those really haven't been associated with a lichenoid reaction
sz drrees, I take synthroid, maxide, potassium, diovan and small asprin, any of those raise a red flag?
Janice Thanks, drrees

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drrees sz, maxide is a possibility and I don't know off hand what diovan is but the rest are ok

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Rosalie Diovan is for high blood pressure - I take it also
sz because maxide is a dioretic?

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Janice Anything in your studies linking OLP with menopause?
drrees Rosalie, thanks, then yes it also is a possibility although it has not yet been reported.
sz are there any safe dioretics?
Mary Mary v can murcury fillings cause it?
drthornhill Roasalie dental fillings can cause lesions very similar to OLP. Often it is possible for an Oral Physician to tell if fillings are likely to be the cause by their distibution. Also skin patch testing with dental materials can help determine if they are the cause but sometimes it is difficult to make a firm diagnosis. Removal of fillings and replacement with a different material will result in resolution of the lesions if fillings are the cause. But in cases where thi

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joan another hypothyroid here
drthornhill Mary the mercury component of fillings is most often the casue where fillings are to blame
mary Janice, that gets my vote.
drburkhart Mary, thedata suggests that most OLP are women and in the post menopausal group. Since I deal mostly with the internet group, we are finding that we get much email from men. This could be because research suggest that women seek treatment more frequently that men. Men may be more inclined to ask questions when they are not being identified. This is just a thought. We also get emails from parents with children who have OLP as well as people in their 20's. If OLP is hor
mary And it is when my OLP started.
sz my surgeon has prescribed topical kennalog
joan i have mild olp - the dentist noticed it. Will it get worse /spread to other area unless treated?
drrees sz, yes some diuretics have been associated with lichenoid reactions but certainly the fact that you are taking it does not automaticallly mean that is the cause of the problem. There are many people not taking any medications who also develop olp
mgoodman Joans quesiton is good, mine is mind also and I am trying to clear it up
mary If you find a treatment Joan, share it here.
CS I have had this for 2 years now and it getting worse.. started at 37 years old.
mgoodman Dr. burkhart where can we read more about the vitamin C research
Rosalie I think I will try bumping up the vitamin C and give it a try.
drthornhill joan the progress of OLP is very variable. If it is mild it is more likely to take a less troublesome course than if it is sever.
drrees joan, good question. One long term study indicates that olp may change forms over time. However, you probably don't need treatment as long as the lesions are mild
Janice What about salt water/baking soda rinses? Do they help at all?
sz what do the md's feel about chances for eruptive type to become malignant
Mary maryv salt on anything makes it worse
mary not true
joan this is my worry too sz. the dentist was worried and sent me straight off for a biopsy, which was ok thank goodness
Janice Regarding malignancy - HAVE A YEARLY BIOPSY!!!!!
drburkhart mgoodman, I am trying to get someone well-known in nutrition and medicine to be our guest. I am still waiting to hear from him. I think that this would helpful to many people who are interested in the foods we eat and possibilities of items that may help.
mgoodman Janice, you can't constantly biopsy your whole mouth, I don't understand
mary that would be great Dr. Burkhart
Mary maryv thanks all!
joan really Janice? Do the doctor's agree with this advice?
drrees sz, that is a very controversial issue. However, the mear suggestion that it might indicates that your lesions should be treated and followed. It is usually possible to detect any changes suggestive of malignancy at an early stage

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cotita2 Janice: I don't think we should make bioosies yearly in order to prevent malignant transformatiosn.
sz that's why the dr removed, but, I wish he had biopsied before surgery
drthornhill sz the risk of malignant change in OLP is very small - all be it higher than in normal oral mucosa. The evidence suggests that type of lesion per se does not affect risk of malignant change. However, the main risk for oral cancer is smoking and it is more likely that smoke carcinogens can cross the lining of the mouth if you have erosive lesions. The solution to this is -don't smoke
Janice I had a yearly biopsy of my OLP and when I had a malignancy, they knew that it was recent
sz I don't smoke
mgoodman I doctor on nutrition would be great. I will be looking forward to it. Hope you can get someone
drrees To all, the biopsy question seems to be a common issue.
drthornhill sz - excellent

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mgoodman drrees it appears to me that you have to be careful that the biopsy could make the problem worse. Am I correct in this thinking

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drburkhart Everyone, we find that at the stomatology center, photographs are worth a thousand words. It is difficult to see subtle changes if you do have some record to review and compare. It is so easy anymore to use a digital camera and to store the records. If some change may appear to have occurred, the practitioner can pull this up and check the area. They can then determine if a biopsy is appropriate.
CS The Oral Surgeon who did my biopsy indicate that if I had open sores that did not close for longer than two weeks to come back to be checked.. does that make sense?
sz excellent suggestion
cotita2 I think that if you have a well trained clinician you don't need a year biopsy
drrees The problem is that if one has multiple lesions, which one do you biopsy annually? There is a mateial called toulidine blue which can be applied to suspicions sites and may indicate when biopsy is needed. This also is a controversal issue however
drthornhill mgoodman there is no evidence biopsy increases the risk of malignant change, but it is very important in making the correct diagnosis and detecting any malignant change early on
sz that is what my ent said, too many places to biopsy
mgoodman Idrrees, it would appear that for us who have access to good doctors, that a doctor is our best chance to
mgoodman ]prevent unwanted biopsies.
mary Which doctor is really the best for treating this......denist? Ent? Dermatologist?
drrees mgoodman, absolutely.
Rosalie Where can I get a listing of doctors in Kansas City area
sz I can't find a dr who will do this with me
mary as far as training is concerned. I have been to all..........
Marl Are any of the Dr.'s familar with the use of Protopic Ointment to treat OLP?
sz they all say they have no expertise in olp
mary then who does.......is my point.
mgoodman To any of the doctors, I am a cancer survivor and really into nutrition. Where can I read
mgoodman about the research with Viatmin C

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drrees Marl, yes. It holds a lot of promise and more reports are coming out monthly. It may prove to be a very effective substitute for topical steroids. More study is needed however,

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sz my dentist has been the most helpful, but, the MD's all appear as frustrated as I am

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mary thanks SZ

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mary I agree.
drrees mary, If you will provide Dr. Burkhart with info regarding where you live after the program we will try to find someone in your area who has some knowledge regarding the disease.
Rosalie Thanks for all your help - I'll look forward to more of these.
Janet Typ Any dr. answered Marl's question re:Protopic Ointment?
mary thank you Dr Rees
drburkhart cotita2, we have had a least five people contact us in the past month who have been diagnosed with oral caner. There are several scenarios: it was lp and changed, it was never lp in that area, they were not followed adequately or there was some other factor involved. Possibly there was some time lapse in the original diagnosis or the follow up. The main point is that it is important to be biopsied initially, take the role of your own best friend and go back if you th
drthornhill Mary/Mary/sz Finding someone who knows about OLP is difficult. Some dermatologist will know alot about it but not all. Similarly with dentists. It is really a case of finding a primary care physician or a dentist who can refer you to someone with specialist knowledge in your area.
sz are you recommending the vit c internal or as a topical
Janice drburkhart, I agree and I thank you for your help with my oral cancer situation
mary thanks Dr Thornhill...........

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mary it may be you......ha ha ha
mary hey, you gotta laugh
mary and try to stay positive!!
drthornhill Mary. You certainly have!!
sz I e-mailed dr. b earlier this week about a referral, but no response as yet, is this because it is a busy time or because there are no recommendations for my area?
drrees A question for all of you. If you think you may have lichen planus have you read the information regarding the steps we think you should take. These are listed on the web site. If you know you have LP there are also suggestions for what to do then.
drburkhart sz, where do you live?
sz springfield, Illinois area
Rosalie Also a dr in the Kansas City area, please
mgoodman Drrees I have read all the information. I am just one of these people who can't get enough, I
drburkhart sz, yes we are looking for someone and I have an email in to that person.
drrees sz, I suggested to Dr. Burkhart that you should porbably do to Mayo. A long trip but a great place.
mgoodman always seem to have questions. Probably because I am a cancer survivor and am used to navigating through the medical system
mary If I may be so bold and I will you all to stay away from India.....unless you have money to blow.
sz Thank you
drrees mary, thank you for saying that.
mary I owe it to people

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sz I researched and found an MD at Mayo that lectured on OLP, but, have been hoping to find someone in my area to help me sort through everything
drrees Rosalie, it won't be a problem finding someone there. Contact Dr. Burkhart and we can help get you started.
mary I will do that too........thanks doctors ALL for your time!
CS do any of you keep a daily journal, is that helpful for doctors when you do finally find one who knows something about this stuff?
drburkhart Thanks to everyone who is with us today and for all the good questions. Again, contact me after the session and I will help you in any way possible.
Janice this service your provide (the chat and the web site) are among the greatest thing on the internet

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drrees sz, you are right and we will try to find someone closer. However, I think your problems are unusual enough that we neee someone with a lot of expertise.
aupton ABOUT MINUTES TO GO. Please begin wrapping up your discussions. I will leave the room open for about 10 minutes after the hour for exchanging emails.

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drthornhill All patients - do you find this chat room helpful. I am based in Europe and at present we don't have anything similar
sz thank you for the support, it is incredible to have the ability to view all past chats and to not feel like the lone ranger
CS yes, very helpful
mgoodman I think this has been great. It is nice that you doctors give your time to help us. Thank you
cotita This is my first time to be in. I think it is very good
Rosalie Really appreciate your efforts in being OLP support. Thanks

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Janet Yes, thankyou. My first time also.
drburkhart Dr. Thornhill, we get many emails from patients in Europe. That is why we have made this so international. It is truly a small world.
drthornhill - the magic of modern communication
drrees Drthornhill. When you get to Texas you'll find that Baylor is only a few hours up the road. We have records on many OLP patients and would be most interested in collaborating with you on some of your work.
sz when will this transcription be available on the site?
mgoodman Real fast, where can I read about the vitamin C studies
drthornhill drrees I would very much like to come and visit you at Baylor
Janice Could it do any harm to try the 5000 Vit C's?
aupton 3 minutes to go, folks. Transcripts should be on the site by tommorrow morning.
drrees mgoodman, I don't think you can find any only personal opinions
drburkhart mgoodman, contact us after the session. and Janice, I would confer with a person well-versed in vit. C and nutrition in general.
mgoodman Would 5000 units of C be harmful to try
cotita Drthornhill: What about my patient. The white plaques were excised but 15 days later it appeared a 3 mm white lesion. An oral path diagnosed "atrophic olp. Can you recommend sone kind of treatment?
drrees Janice, 5000u vitamin C is excessive and if you ever stop abruptly you may develop secondary symptoms of scurvy to be cautious with that approach
sz thank you for the opportunity to feel connected to others and professionals in the field who have the expertise, it is so validating
Janice Guess I won't try that thanks
drthornhill cotita you should see the pathologist or physician who made the diagnosis about treatment
drburkhart mgoodman, let me research this a little more. As Dr. Rees said , we are not aware of concrete studies.
aupton THANKS TO EVERYONE. PLEASE BEGIN SIGNING OFF NOW.
mgoodman What is the highest amount of C you would dry drrees

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drrees 500 mg daily
mgoodman Thank you, I already take that amount. I appreciate your time
drburkhart I agree, this is what I take.
cotita thanks to all
Janice I hate to leave, this is so helpful. See you all next time
Rosalie Hope you do this soon again. Thanks
drburkhart cotita, I do not think that we answered your questions, will you contact me after the session?
cotita yes
drthornhill I have enjoyed taking part in this debate - best wishes to all OLP patients
mgoodman I am signing off, this has been most helpful. Thank you again
drrees Thanks to all for participating and I especially thank you Dr. Thronhill. I look forward to getting to know you soon. I have known your works for quite some time. They are a great benefit as we try to sort out this disease.

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drthornhill drrees/burkhart thanks and goodbye

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drburkhart Thank you Dr. Thornhill! I know that this is a difficult time for you with the move, but I greatly appreciate your efforts.
aupton Thank you all for your participation. See you next time.

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