oral lichen planus

The ENT doctor told me the brush biopsy didn't damage your tongue like the cut and stitch and it gets cells from a wider range of tongue.  It was much less painful.  Then he treated my tongue with silver nitrate which was not painful and did remove lesion. He told me not to go back to oral surgeon as he was chewing up my tongue and causing trauma. I don't know, everyone tells you something different 

Thank you,

I haven't either procedure yet, but ask for the brush biopsy.

Think I'll avoid surgeons.

I'm taking NSAID's for inflammation. Was wondering if their could be a link??

I'm just so tired of this, wish I could wake up and have it gone. At least you know for sure what your is. I'm not anywhere sure that this sore in my mouth I swear lichen planus. The brush biopsy detected lp but that was before I had the sore. I guess I will go see the new oral surgeon that the dentist suggested but I'm definitely not going to let him cut my tongue as this is how all my pain and problems started  sometimes doctors just don't do the right thing 

I think you are wise not to let them cut on you.

My gut tells me that's not a good solution.

But, I'm really new to this.

I also have herpes simplex virus ulcers in my mouth, which complicated the diagnosis.

And, for years, I thought my mouth sores were part of my ulcerative colitis. All in all, I totally understand your frustration, I too am really tired of this.

Hi noni 

hope your feeling better and your mouth as settled down, absolute nightmare dealing with this... I suffer with my stomach always thought it ibs but I do think the lichen planus causes many other things, doctors just seem to brush it off.

Hi, Karen,

Thank you. Hope you are doing well. I'm better.

I searched for what kind of doctor to even approach for help. couldnt find a specialist who advertised anything about olp.

My dentist had no idea what to do.

My regular doctor was at a loss too. So, their solution is to just do nothing. I'm reading people's stories where they have suffered for 15 years or more without any real help or support from the medical community. I can't understand this lack of information about how to recognize and treat Olp. My first doctor prescribed nystatin when I described my symptoms. I really appreciate this support group.

Ibs can be serious. The Cause may be an auto-immune disease. I'd have it checked by a doctor.

I am wondering if there is some kind of link between the OLP and either other auto-immune disorders or maybe the meds we use to treat them or a genetic link??? I just want to get rid of it. I hope you feel better.

Thanks noni

i do think all other problems like bad stomachs, sore throats, itching, joint pain are all linked to the hpv virus which is linked to the olp. How many years have you suffered noni, 

From what I can gather Noni lichen planus is a begnine lesion and don't really think there's any cure... I think stress plays a big part and aggravates it.. there are different strains of it caused by different things... hpv being one of them. How long have you had it

Wow! You just blew my mind!!!

Please where can I find the literature about the different strains of OLP and connection to hpv?

I have anal hpv.

So, somehow hpv makes sense to me.

I've never had a bad Pap smear, but had a partial hysterectomy about 40 years ago.

Haven't had sex in 35 years.

But, one of my husbands was a Vietnam vet. I got a few std's from him.

I hope young people today heed the warnings about using condoms. If not, you can sure pay for it.

I feel like a poster child for std's.

Thank you so much for your support.

Today is a bad OLP day for me. Pray you are well and happy.

Hope you feel well and have a fabulous day.

Karen! Karen! Karen! Thank you! Thank you! Thank you!

Wow!! You solved the puzzle for me.

I couldn't believe this many people suffer from OLP, and no one knew anything about it.

You provided the missing link: hpv.

Now, when I google "oral lichen planus and human papilloma virus" the list of hits goes on and on...wealth of info.

So I probably have strain 16 or 18 according to my cursory research.

This is perfect timing. I have an appointment with an infectious disease doctor in two days about my hsv2. Now, maybe I can get some straight answers. I now know that my dentist and primary care physician probably know the connection. Why oh why, didn't they just tell me???

To me knowledge is everything. Even when I was 23 years old, if I had only known. Thank you, dear Karen.

OLP IS an autoimmune disease.

All autoimmune diseases are linked!

The best thing to do is change your lifestyle- diet & how you deal with stress are both important.

Thanks to Karen; and Based on my cursory research, very cursory, I see there is probably a link between 4 strains of hpv and maybe some herpes viruses.

Yes, auto-immune. But, I just like knowing the root cause of things.

And, yes diet and stress affect our bodies greatly.

I have a pretty healthy diet, but I've been under intense stress and in excruciating pain non-stop for 10 months. Everything just came to a head where I'm finally able to connect the dots. I thought it might be a drug I'm taking, or a food I'm eating, or even a genetic link. But, I feel better knowing it is probably caused by the same virus that causes hpv. Not always, but strong correlation based on scientific research.

Also HCV... it's not strong enough.

I spoke with my oral pathologist and she doesn't believe there is a link btw. HPV & OLP or HCV & OLP.

I have had both HPV (decades ago) & HCV (I was treated & an no longer HCV +), however I don't believe them to be the cause... perhaps a faulty immune system is the cause?

Keep us posted if you find out anything new

Lovely to speak to you Noni... I really don't think the doctors speak too much about it incase we worry unnecessarily, since my divorce 3 years ago Iv had a lot of stress and it as aggravated it.. the doctor put me on antidepressants which I have just weened myself off...my husband cheated on me and led a double life!!! Don't want another man in my life again....this site is really good Iv met some lovely ladies on here and we are now friends... and I speak privately with them you can private message on this site. Iv just finished work ready to put my feet up now... are you in America?

Also Trudy hpv is a virus it doesnt go but it can go in remission

Dear Karen, thank you, again.

I am 71.

Live in US.

My heritage is

46% English/Welsh,

26% Irish

Since this support site is out of the U.K., I was thinking there might be a genetic link.

However, when I check the scientific research for a correlation between OLP and HPV, some of the clinicals were were ran in the Middle East. Not what I expected.

So I guess these things have no boundaries. I think when I was young and sexually active there wasn't a wealth of information and things like this weren't discussed in "polite" company. I think, even now, male doctors are reluctant to discuss "taboo" subjects with women. It mystifies disease and creates ignorance. I am all about full disclosure. You are a blessing.

Yes, I am aware of what HPV is.

I just don't think there's enough scientific evidence to link to OLP

Regardless, OLP can go into remission too... by diet & stress management. It's not easy but it can be done

All the best

Thanks Noni

You are right about the doctors back then... lovely chatting with you... take care and keep well... keep in touch x

What type of a diet do you need to be on?  I know stay away from spicey and hot and citrus. Also no alcohol 

Hi Karen & all fellow sufferers of olp - I'm fairly new to it as it started at the end of November - so good to be in touch with others with the same plight! My mouth is sore & seems to go through a variety of stinging - hot dry- weird sensations! My tongue has little white patches on the side. I'm having biopsy on Monday ( which I'm not looking forward to!) I went to see a homeopath specialist today who had given me some remedies (hopefully)! Even she hadn't heard of LP in mouth or scalp which I also have ( it had caused me to loose my hair round the front hairline) it must be quite rare - my doctor hadn't seen it before! I worry about what will happen next. I've got used to the hair loss but this mouth thing is so invasive & is sore all the time. I am 66 so have been through the menapause. I don't think I've been unduly stressed as I'm now retired & love my life. I'm grateful to be able to be in touch with you all & will let you know how I get on with the homeopathic treatment & biopsy. Very best wishes Catherine

This is the abstract of one scientific article I found:

"Abstract

Several types of human papilloma viruses (HPV) have been associated with benign and malignant squamous cell tumours of mucosal epithelium. To identify HPV in erosive oral lichen planus (OLPe), considered as a premalignant lesion, tissues from 20 patients were examined by Southern blot hybridization with 32P-labeled HPV DNA probes. Type 11 was found in 6 of the lesions while HPV types 6, 16 and 18 were not detected in any of the tissues examined. Using a type-specific polymerase chain reaction (PCR) assay for HPV-6, 11, 16 and 18, HPV-11 was detected in 8 of the samples (all of those positive by Southern blot), and, in addition, HPV-6 was found in 5 samples and HPV-16 in 3 samples. Overall, by the more sensitive PCR assay, 65% of samples were positive for HPV DNA. The finding of HPV DNA in many of the samples using two different techniques indicates a high prevalence of HPV in the OLPe afflicted oral mucosa. However, the role of HPV in the pathogenesis of OLPe has yet to be determined." This study had the best methodology, in my opinion, from the many I found online this morning.

Thanks, Karen

Dear Lyn, the first thread I was on people had all kinds of diet restrictions. But, I don't know that diet has as much to do with it as stress. For me that could be mental, physical or emotional stress.

Dear Catherine, welcome. so sorry for your painful symptoms. I only have OLP. But I sympathize with what you're going through.

I have white patches on both sides of my tongue. But, they come and go. Sometimes my tongue swells up and hurts to where I can't sleep.

Today, I have three other spots that are causing erosion and pain.

Do you exercise a lot? I've noticed that over exertion can trigger some of my autoimmune symptoms. And, it's relative. What is over exertion for me would be nothing for most people. But, physical pain or a stressful situation can also cause flare ups. Some things are very subtle. I'm just starting to become aware. Good luck.

Wow well done Noni you have done amazing with your research, you have had a busy day, I have sent you a private message let me know if you have it .. 

Thanks for your message Noni - I'm sorry to hear that you have these painful symptoms too - it's ironic really I've just lost 2 stones with weight watchers & felel so fit - walking a lot more etc but the OLP is sabotaging things as eating is a relief from the hot soreness & as soon as I've finished I'm so aware of my symptomsI want more to eat! I ate s whole tub of chocolate ice cream 2 days ago

Dear Catherine, congratulations on losing 2 stones. That's great. My caregiver has been fixing lots of different healthy stews and soups with various vegetables. And I'm trying to eat salads. I went through a period where I too could eat a whole tub of chocolate ice cream. I had to cut out diary though because of inflammation.

I wake up with a sore, swollen tongue, but noticed my mouth feels better after I drink my hot coffee. Cold drinks and ice feel good too. Praying you feel better today.

Dear Trudy,

Do you know of a recommended diet for OLP?

Thank you

Hi Catherine, I've had this in my mouth for 3 years now. I was told by two Ear Nose & Throat specilists to NOT have the biopsy because too often that area (which is already compromised) will not be able to truly 'heal'. I have had good sucess with a few things: It's fairly common knowlege that tomatoes and citus fruits agravate the condition. But also eliminating or cutting back sugar and gluten helps.  Also I brush immediately after eating and I often rinse my mouth after brushing with 50% vinegar and water. The open sores, I  dab an over-the-counterproduct 'CamphoPhenique' on them. Sores gone in 24 hours. A prescribed lonzenge, Clotrimazole 10 mg (usually prescribed for Thrush) has also kept pain at bay (along with keeping the mouth super clean). So that's all I know for treatments...bottom line, this is an auto-immune disease so it can present will all sorts of changes and diet changes ar

e our best defense. ps Seriously consider calling in sick on that biopsy...they know you have OLP, just ridiculous to punch a hole in that compromised tissue!

Thank you Peggy that has given me something to think about! Do you live in the U.K.?

Dear Peggy,

I so agree with Catherine. Please insist on a brush biopsy. It is less invasive. My intuition tells me to just say no to cutting a hole in my tongue.

I am not saying this is a cure, but my olp has significantly improved since I've been using tea tree oil.

Tea tree oil is totally natural and not derived from petroleum like some treatments.

I put one, and only one, drop on a q-tip and then gently swab the lesion.

I started using tea tree oil on herpes simplex virus ulcers in my mouth and noticed an improvement (plus I'm taking anti-viral meds). But, since I've been using it my olp is better. That could be a coincidence. I don't know. I have alternate bouts of olp and oral hsv2.

You were so smart to not have the biopsy. That is what caused all my problems. I had one small white spot on side of tongue. Didn't hurt and didn't even know it was there. Two different doctors biopsied it and has been sore ever since. I wish they had just watched it. These were oral surgeons. Don't let them cut you. The brush biopsy is much less invasive They didn't know what mine was just by looking at it. Good luck

Hi, Karen,

I went to an infectious disease specialist yesterday.

He was really nice, but not much help.

He gave me a stronger anti-viral Rx to suppress the herpes simplex virus 2 from flare ups, which I'm really grateful for.

My olp has gotten significantly better in the last 3 weeks. During that time I've been taking an anti-viral med, and using tea tree oil swabs on my lesions. I also use the tea tree oil on my skin sores. I use to wake up in the middle of the night because my tongue was so painful even though I take pain meds. I still have some patches and ulcers, but they don't seem so painful. And I've slept through night for several weeks.

Pleased to hear you are getting some relief Noni. I hope it continues. When I go for my biopsy on Monday I will ask if I can have the brush type. I'll try the Teatree too. Best wishes Catherine.

Do not let him take a chunk of your tongue as you won't be able to eat for a week. It builds up scar tissue. Unless they're concerned about cancer I wouldn't do it. It just causes the tongue to be chewed up and painful. My ENT did brush biopsy and removed lesion with silver nitrate. So much better. I'm going to new oral surgeon march 7 so will see what he has to say. Been to so many drs with no good answers

Best wishes for your care and treatment.

Hi noni

im so pleased your olp is much better and that your sleeping now... Think if you get a good nights sleep it really helps. 

 

Sorry hadn't finished then noni.. Looks like the tea tree is working. Hope you have a lovely day. X

Hi, Karen,

Yes, I feel like I'm getting some relief as a result of tea tree oil and valacyclovir. It could be a coincidence and the olp is just in remission.

But, whatever the cause, I'm happy for the easing of pain, swelling, and lesions.

I hope you are better today.

Best regards,

Hi Noni so pleased to hear you are feeling some relief from your olp I hope it continues. I had my biopsy yesterday it went well & wasn't painful I have to wait till 3rd April for results which I'm sure will confirm olp as I already have it on my scalp. Very best wishes Catherine.

So did they cut out a piece of your tongue when they did biopsy ?  And why would you have to wait so long for results. I've had two biopsies. One surgically removed lesion, heard back in two weeks and one a brush biopsy heard back in less than week. 

Is the tree tea oil a mouth rinse?  I was looking at some today. One was tree tea toothpaste and the other came in a bottle that said tea tree oil that was a mouth rinse. 

Dear Catherine,

Hope your biopsy didn't hurt too much.

April 3 for the results; are you going into the doctor's office to get the results?

Olp is so painful, I wish there were an effective treatment.

I don't know if my olp is in remission or my treatments for herpes simplex virus is helping.

Praying you feel better soon.

Best regards

Dear Lyn,

All of the above. I have a mouth rinse with tea tree oil, plus toothpaste with tea tree oil.

In addition, I've been using 100% tea tree oil, one drop on a clean q-tip, I don't use more than one drop at a time (because it's highly toxic if ingested I don't use more and I don't swallow it) I dab each lesion one at a time. Then I don't swallow my saliva, I spit it out in the sink until it's completely free of the taste. I repeat that for each ulcer or lesion. But, in addition, I've been taking anti-viral meds for about 6 weeks. (I've found reasearch linking olp to herpes viruses and hpv) I may just be in remission, but either way I'm better. I only have one active ulcer under my tongue. Three ulcers in the the inside of my lip just cleared up. I can feel a new spot on the tip of tongue (a regular spot that reoccurs often). But, the pain is significantly less than a month ago, and two months ago. I did have two medium sized cloud like spots, one under each side of my tongue for weeks on end. I would wake up in the middle of the night in so much pain I couldn't sleep. And my tongue would be so swollen I had difficulty eating, drinking, and talking. I hope you find relief from your pain.

Best regards

PS- if you are in the US, you can order from Walmart

Thanks Noni - no it wasn't half as bad as I'd feared - I had local anaesthetic it was just like going to the dentist & it's not sore! It wasn't on my tongue he did it between cheek & gum at back of mouth I can't even see it! Yes I have appointment to go & see him on 3rd April - I'll let you know how I get on. I'm hoping you're still feeling relief & that it will continue. Best wishes Catherine.

Hi Lynn - my biopsy was taken from area between cheek & gum so it's not affected my eating - it was much less hassle than I'd feared. I know it seems a long time to wait but he said it takes 3-4 weeks for results to come back! I live in Nottingham UK - it's probably a different system if you're outside U.K. I'll let you know what happens - very best wishes Catherine.

Hi, Catherine,

I'm relieved your biopsy wasn't too painful.

My symptoms are a little worse than they had been.

Not sure, but I'm wondering if nuts play a part in flare ups???

Hoping you have a pain free day.

Hi Noni - sorry to hear your symptoms have returned - it's hard to know what makes it worse. I notice that my mouth feels ok in the morning & gets worse in the afternoon! It's a weird thing😟. Hopefully your symptoms will calm down again. You were doing so well. Best wishes Catherine.

Hi, Catherine,

Thanks for your support.

Interesting about how your symptoms change with the time of day.

I noticed that every evening, about sundown, I would get a sore throat, and then my tongue would start hurting, and about 2:00 am, the pain would be full force. But, then calm down in the morning.

I've never told anyone, I don't think, because it sounds so odd.

Doctors don't care about stuff like that.

Does your tongue ever "burn"?

Hi Noni In answer to your message my tongue feels hot & dry which makes me want to eat or drink something to make it better & it does but as soon as I've finished my tongue still feels the same- nothing helps. Lately I've also had a slightly funny taste in my mouth. I've had a sore throat for a few weeks & cant decide if it's the one that's doing the rounds here or if it's all part of this condition! Hope you're not suffering too much today. Best wishes Catherine