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Oral Lichen Planus...anyone have symptoms disappear through diet change??

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Sunnysteph
Sunnysteph

I've been reading alot about the Paleo diet and how this has helped alot of people with autoimmune disorders. Has anyone had this actually make the burning and mouth leisons disappear?

Also, I'm needing a teeth cleaning, but due to the extreme sensitivity in my mouth, I am beyond terrified. I have to use children's toothpaste and even then can only use a pea size. I do have v some magic numbing mouthwash, but the numbing only lasts a short time. Any good ideas for helping with the burn and sensitivity?

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  • yvonne19574
    yvonne19574 Sunnysteph

    Posted

    HI Sunnyateph,

    Im going to read up about that diet this site is really helpful for the different ways LP sufferers are trying to deal with their symptoms.Ive just had some barium tests and X-rays and it seems to have set the whole thing off again mouth wise and below.I shower using Dermol and thirty ? Ointment when needed together with a very cautious application of Dermovate unless it gets severe down below.But like you I'm struggling now to use any toothpaste even the extra sensitive numbing variety .Have you a dentist who understands OLP? Not many do .Any treatment has to be very gentle 

    if I were you I'd check before booking in with the dentist themselves over the phone.Ive got used to taking printed out information from the med sites to the doctors now about my other conditions because many don't know or fully understand the illness, I'm hunting for a new dentist after moving and not looking forward to the ignorance of some professionals and others reluctance to listen or research the subject.Some dentists won't work with OLP patients but I've no understanding why.Its not infectious and contagious it's just downright painful frustrating and annoying.Have you lost weight because of having to change your diet.? Or restricting what you can eat .Im now living at the moment on very soft foods low sugar of course and salt nothing acidic or hard .Baguettes have been off the menu for years even when I didn't have the diagnosis ,

    I do find drinking a fair amount of water helps gradually through the day although that means thinking ahead for loos.At the moment I'm cleaning my teeth only with water and a tiny bit of salt in a saline solution and using a lot of mint tea .eVen the mint with the hole is hurting my mouth now but I'm sure there are others on this site that can help you.dO you suffer from very sore and blistering lips now the sun has decided to show up.?

    Does anyone out there recommend a trustworthy lip balm or lipstick to help

    over the summer months? Good luck in you diet experiment keep in touch .

    Im now using baby shampoo because my head and scalp is so sensitive.

    Waiting to have a biop at the moment I will ask then and share the info if its

    positive and worth trying. Best wishes Yvonne

     

    • karen41728
      karen41728 yvonne19574

      Posted

      Hi Yvonne

      I see things are just the same..... you and me both Iv been awake all night with my head scratching it's driving me crazy I really don't think anything helps apart from not eating and like you say just drinking water. I am really depressed with this awful disease ask your doctor for some shampoo , I had some a while back and it did help I'm going to get some next week, wished you lived closer then we could get together for a chat, this is like coping with loads of different illnesses... when's your biopsy Yvonne let me know..... I'm using coconut oil on my lips even rubbing it in my scalp but just greasy,

      Take care and keep in touch

      Karen xx

    • yvonne19574
      yvonne19574 karen41728

      Posted

      Hi Karen,

      Thank you for your help, people look at you itching at times as if you've got the dreaded n....I daren't say it or it will set me off again! ID have liked to meet up sometime perhaps we should organise a LP and OLP coming out day so this illness can be discussed and people informed about it.Its interesting what you say about coconut oil I've just started cooking with it and putting it in my food.It seems it has healing properties so I will try it for my lips, someone said its a good moisturiser for your skin.Another issue is the sun is coming out again and all the sun barrier creams and sprays always bring me out in a hives like blister rash.Any ideas would coconut oil fry me!Im up for a endoscopy (bottom end) on Tuesday and waiting for another throat down ASAP.I will say this the docs down here don't waste any time referring you if your not improving with the initial meds.

      I will be the first bionic colonic woman on the NHS if this carries on.Its a pity I won't look like Lee Majors did no matter what they do to me.

      PS having Botox for my FHM but in the back of my head so no one sees how good it should look! Thanks again I will be I. Touch soon.Yvonne

    • karen41728
      karen41728 yvonne19574

      Posted

      Hey Yvonne

      I wouldn't use the coconut oil in the sun I think it would fry you, but I do like it for moisturising, great idea I think we all should meet!!!!

      Good luck for Tuesday let me know how you get on, I agree with you your doctors are on the ball.

      Had a few glasses of prosseco tonight but it's set me right off again now, can't even enjoy a drink.

      Take care

      Catch up soon Karen Xx

    • yvonne19574
      yvonne19574 karen41728

      Posted

      Hi Karen 

      Sorry I haven't replied sooner I'm just getting over a two day hemeplegic migraine and my brains back in working order again for a while I hope.

      The Endoscopy was not as painless as I'd hoped unfortunately the mild sedation was so mild it didn't relieve anything at all.It felt as if she was scrubbing pans with a Brillo pad only it was me ! I've had four children so I'm not a moaner usually butI must have caught her on a busy day .I was embarrassed for the young male nurse who was holding my arm and trying to reassure me .I truly believe that all staff who perpetrate such investigations should have to have one themselves once a year so they can know and remember what it's like for the actual patient.sHe seemed satisfied there need no further treatment so it's back to the docs as puzzled as ever.I could hardly walk out of that too leaning on a walking stick and hobbling like an old hobgoblin , it's quite funny now but it wasn't on Tuesday.

      I had a H Migraine to go in with it took two days to get over the migraine and the pain of the treatment.My 'stomach endoscopy ' is in July so I have a few days grace.Lucky you drinking Prosecco,! With having hM I'm not allowed alcohol but I enjoy the smell of a good wine or whisky.My noise is quite sensitive now to chemical smells in wine even though I don't drink usually I can tell if it's any good.Our family drink is port at Christmas on an evening all settled down warm cosy chatting and relaxing , now I just smell the bottle !

      I wonder whether sufferers in the UK could have a national day meet up 

      tea and cake or whatever? Is there a a LP, OLP and LS organisation in the UK?this needs a bit of research ie Specialists etc who may be willing to join ?Ive just lightened my hair today with a quick ten minute no peroxide dye

      and I'm starting to pay for it with an itchy scalp already.Vanity. Is a bad trait I've never been darker than honey gold all my life bit I'm wondering now if it's time to say goodbye wood nymph blonde and hello brunette.Im not dark haired by nature though iM gradually getting dull silvery whisps in sunlight.

      Have you'd ever heard of a natural hair colour ant that doesn't affect the scalp?for LP suffered? Maybe someone out there knows of one?

      Im sorry you can't enjoy your Prosecco try sniffing it slowly ....then eat afew grapes if they don't upset your stomach..Keep in touch.Yvonne

    • karen41728
      karen41728 yvonne19574

      Posted

      Hi Yvonne

      Really good to hear from you, so sorry you had to go through all that, sounds so painful, I agree the bloody doctors should try it, then especially no comment at the end of it to be honest I think it's all inflammation because of LP. Then a migraine oh god I suffer with migraines..... Awful.... Like you Iv had three children so I know what pain is.

      About your hair Yvonne I use a colour with a low peroxide but my hairs dark but afterwards yes my head itches, Iv got a shampoo from the doctor it's called Nizoral and also Iv been told baby shampoo helps.

      We will have to see about getting a group together would be good. From what I can see lichen planus can be caused by different things but I do know ours is connected to abnormal smears which is caused through a virus also I have spoke to other women like us who had treatment for these cells and now have lichen planus, but when I mention it to my doctor he just passes on it really annoying.

      You take care and catch up soon x

      Karen

    • yvonne19574
      yvonne19574 karen41728

      Posted

      Hi Karen,Thanks for the support and the Shampoo and another lady has suggested one from the docs.Do you think it's possibly hereditary?

      Tge reason I ask is my mum suffered a lot 'down there' and was literally washed out by a consultant at 84.the only time she had a proper examination for her trouble ,she was so frightened of anything connected to female parts, sex or child birth etc.I wish I could talk to her now.I remember her trying alsorts of herbal remedies, nettle tea, parsnip and honey .etc

      Ive had what doctors say is cradle cap since I can remember,in fact it is quite scaly itchy and raised now.Im going to talk with my daughters they need to know what to look out for.

      We need women with public and media clout to help us.Im having a break for a week but when we return I'm going to do some chasing up popular women in the media.etc.Women in general and teenagers need to know about this .i wonder how many women have been mis diagnosed and given drugs totally irrelevant and basically useless over the years.Yogurt pots in my house used to be used for female parts not eating(plain yogurt no colours or flavourings!).It always returns, no matter what I did, the more I washed myself the worse it seems to get at times.

      I asked a pharmacist about sun tan lotions as I always come up in bumps no matter what factor and sensitivity rate I use.She could only advise a child's highest protective factor lotion,and admitted she didn't know how to help otherwise.Will keep you posted on the results ,I'm not going to somewhere very hot or sticky so hopefully I won't come out in blisters on my lips and cold sores,Everytime in the past I've been abroad where it's hot sunny and windy I end up with blistered lips, cold sores and a rash like raised hives.

      plus I get a stinking cold ! Whats that about?I went to Rome in July what an idiot ....people were moving away from me when they saw me and heard me sneezing sniffling coughing and covered in sores.Great memories...

      do you have any allergies or hay fever ? Rapeseed gives me almighty migraines and nausea if I'm around it for long.even afew minutes sets off my headaches even after Botox.

      There must be more research done with connection possibility with other allergies etc. itchy this morning .What deodorant do find find ok? I'm struggling even with the 'bird' range.I itch like mad.

      Will others contribute their advice to this end of helping others ?

      have a good weekend. will be off line for afew days but like Swartzenager I'll be back!many thanks.yvonne 

    • karen41728
      karen41728 yvonne19574

      Posted

      Have a great time Yvonne and a good rest, I'm going to Rhodes in July I must be mad but I'm really going for my 18 year old daughter.

      I don't have any allergies I know of but lichen planus affects many parts so I really think everything we suffer with is down to that, take care and speak to you after the hols X

  • elaine77527
    elaine77527 Sunnysteph

    Posted

    Hi the best tooth paste is oral nurse you can buy it on Amazon ,,no burning no taste but cleans your teeth and good for them,,I have been using it for a couple of years ,after years of trying different tooth paste ,please try it ,I know it will not burn in any way ,about £3.60 a tube but worth every penny ,,,,,
    • yvonne19574
      yvonne19574 elaine77527

      Posted

      Thank you Elaine I will get it ordered straight away.Thats not a bad price compared to the top brand high sensitivity toothpaste .They can cost £4-£5 .a go. I hope it works it will be worth every penny.Thanks once again I will let you know when I've tried it.Yvonne
  • renee77108
    renee77108 Sunnysteph

    Posted

    Dental work will likely cause a flare...I've just gone through that myself.  I've been on the Paleo diet...actually the auto-immune Paleo which is more strict. I've cheated a couple of times and been sorry for it.  I've learned that alcohol, sodas and sugar are the biggest no - nos. I've decided if I want this to stay in remission...then I have to stick with it. It does get easier with time. I brush my teeth with activated charcoal from bamboo...very inexpensive and you can purchase it online. I put about 1/4 teaspoon in the palm of my hand and dip a damp toothbrush (ultra-soft...also can purchase on Amazon).  I then put about 1/8 teaspoon of salt and a squirt of hydrogen peroxide ...the 3%....in a small cup of warm water and swish and rinse several times.  All non-irritating and healing. If I do this and mind my diet I stay healed...or if an eruption starts it is usually gone by the next day.
  • sholagb
    sholagb Sunnysteph

    Posted

    Hi, I've had ulcerative oral lichen planus since end 2011. I could not take steroid meds and betanoid mouthwash and gels did not work. I'm now on a low carb eating plan and my lichen planus has settled down alot. If I don't sleep well or I'm stressed I may get an ulcer but this is very rare. I can now eat hard foods and spicy foods for the first time in years! smile I use sensodyne toothpaste which i think also helps. Havent been brave enough to use normal mouthwash yet!

    I went for teeth cleaning three weeks ago and no lichen planus related pain or bleeding.

    I used aloe vera mouth spray/gel and even baby teething gel to help with the pain and sensitivity.

  • renee77108
    renee77108 Sunnysteph

    Posted

    I did the Paleo auto-immune diet for 4 weeks and then fell off the wagon.  While I was on it...no erruptions in my mouth and the LS in the private area and on my legs went away.  I've just gone back to it as once I reintroduced carbs and sugar into my diet I flared up in all 3 places.  So yes, it does help.  Not an easy diet, but you do learn to enjoy other foods and the sugar cravings leave quite quickly. I thought I missed some things, but once I started eating them again they really didn't taste that good and the resulting flare was certainly not worth it.  I'm back to the auto-immune and then will switch to just the Paleo down the road when I feel that it is safe to start adding in some other foods allowed on the just simple Paleo diet. They say to only add one food group back every 5 days to see if you have any negative reaction to it. 
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