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Desperate for help...please help :)

Posted , 4 users are following.

jason05355
jason05355

40 year old man. Had 2 outbreaks of OLP in the past 5 years (on the inside of my cheek and inside of my lower lip). My mother has erosive OLP and has had sores for over 5 years too. Back in January I was on a plane..at the time I sprayed some colloidal silver in my nose and mouth to prevent germs since it was a long flight and was also taking L-citrulline as part of a workout regimen..on the plane i  ate some potatoe chips. an hr later the tip of my tongue was inflamed and i developed small white circles the next day.  A few days later i had a sore on the side of my tongue was that characteristic lichenoid circle surrounding the area.  I had the sore for a month then it went away.

 In April the sore came back since the area never fully healed and was still sensitive.  It then took a month and a half for the sore to heal.  I spent the last 2 weeks of that time period babying it..eating very bland soft foods, not eating out or drinking and taking 2g of L-Lysine a day.  The lysine worked wonders and totally healed up the sore.  Well, last week i got a little carried away since it was my friends bachelor party and ate all kinds of foods and drank more than i usually do.  the next day a tiny sore emerged and now it is back the full size the way it was months ago.  On top of this i developed glossitis / geographic tongue which comes and goes.

I started a lysine regimen again and for some reason it started causing severe diarrhea and cramping. i went through an entire bottle previously without any problems and now i am unable to tolerate it.

In summary, i am beyond frustrated,  this is really ruining my life and i am losing hope. i have become very irritable and people are telling me they cant stand to be around me. i am so stressed out about this that is affecting my relationship with my girlfriend. I feel antisocial and dont want to go out anymore and am unable to eat normal foods and i have lost 10 pounds. my whole mouth feels dry and gritty and disgusting and inflamed all the time.

Can anyone help me? I wil do anything to feel better.  thank you! 

1 like, 12 replies

12 Replies

  • ckitefly
    ckitefly jason05355

    Posted

    Hi Jason. I don't have a confirmation on my OLP yet but going in for a mouth biopsy at the end of the month to find out for sure.  However, all my symptoms lean towards it.  Mine started back in 2009. At first I thought I burned myself with hot food but then sores never went away.  They still never really go away. I say they calm down and almost heal but then any hard or hot food seem to irritate them.  I went to a ENT doctor and he did give me a steriod mouth rinse that I did for three times a day for 10 days and it really helped with the swelling since mine are in my cheek area at the back towards my last molar which I then continue to bite down on and adds to the already irritated sores.   I think I read to not use Listerine somewhere but I'm not too sure.  I have read about it and they say that medication like for high blood pressure can cause OLP and then I think silver from say a filling.  I have both high blood pressure and on meds for it and actually got the silver filling shortly before the sores started. However, if you ask a dentist about that they tell me it can't be the reason.  I guess time will tell for me.  My problem for the last several years and hope you too don't have this and that is a Dentist will not work on my teeth and that is even clean them with the sores in my mouth.  I'm 48 and besides my first two cavities at 40, my teeth and gums have always been great. Now, I have another cavity and my gums are inflammed because of the lack of treatment.  I have been running in circles on trying to find out what the sores are from for years now.  Just recently, I feel I am getting somewhere.   Good luck and my suggestion is to start with the Ears Nose and Throat doctor.  Mine looked in my mouth and saw the white lines also on my inner cheeks and said it looks like OLP.  Good luck
  • renee77108
    renee77108 jason05355

    Posted

    This is what is helping me and I would say at least give it a try. First avoid any foods from the nightshade family (potatoes, tomatoes, peppers & eggplant as they cause inflammation). No alcohol and give up sugar...yes, entirely. Purchase activated charcoal made from bamboo. You can find it online and is very expensive. Brush you teeth with it...yes, you heard right.  It is totally non-irritating and does a good job of cleaning your teeth. Put a quarter teaspoon of it in the palm of your hand (I store the spoon right in the jar). Dip a super duper soft toothbursh in it and brush away. Rinse with a saline solution several times. A scant teaspoon of salt per pint of warm water. If you can go grain (or just gluten) free and dairy free as well you will notice further improvement. You will also have more energy and just feel better overall. Investigate the Paleo diet...a lot of the same principals. If you feel you are getting an infection...put a squirt of 3% hydrogen peroxide in the saline solution and rinse with that (don't do this all the time as it can cause sloughing of the skin if overused)...just as needed. Feeling stressed...watch a funny movie, go for a walk or bike ride. Call a friend who always gets you laughing. So something that will make someone else happy...you will be surprised how much it will lift your spirits. Life is short...find the joys.
    • renee77108
      renee77108

      Posted

      I meant to say that the activated charcoal is very INexpensive. Lots cheaper than all the fancy toothpastes they try to sell you on that only make this condition worse.
  • jason05355
    jason05355

    Posted

    Thanks for all the feedback!  I had all my mercury amalgams removed last year.  could this still be the result of residual mercury in my mouth?
    • renee77108
      renee77108 jason05355

      Posted

      I had my mercury amalgams removed almost 10 years ago...and only developed LP in the past year.  So I would think not.  But it is a good thing to get them out of your mouth. Certainly a step in the right direction.
  • ckitefly
    ckitefly jason05355

    Posted

    That is a good question.  One that I too would want to know in case I have to also have my mercury fillings removed.  Was that a suggestion made to you to do because of the sores?  
  • jason05355
    jason05355

    Posted

    Well i got my first OLP outbreaks while i still had metal in my mouth. I removed them for a variety of reasons but was hoping it would have helped.  I guess not unless there is still mercury in my oral cavity as i did not do a proper chelation/detox yet.  I also wonder if the replacement composite fillings may be contributing to the problem.
    • renee77108
      renee77108 jason05355

      Posted

      I had mine amalgams replaced with ceramic...it's supposed to be the safest.  Still got LP.
  • ckitefly
    ckitefly jason05355

    Posted

    That's crazy.  I went to an Oral Surgeon here years ago when the sores just started and he literlly looked in my mouth, said it wasn't cancer then broke out a book with pictures of mouth diseases and flipped through the pages saying, "no, not that".  Gotta love our medical care.  Now 5 years later, still have the sores and don't know what they are exactly. Until recently I went to my regular MD and he did blood tests because we were first thinking it was maybe Lupus or some kind of auto immune disorder.  However, results were negative on Lupus but blood did show that I was fighting an infection of some sort.  He said that was common due to the sores in my mouth. I then went to EMT doctor who took one look and feels it's OLP.  I'm not looking forward to the biopsy, but at the same time anxious to get answers after all these years.   I'm reluctant to go off of what a Dentists tells me here because I went to one and although he ignored the sores and wanted to move on to a deep root cleaning, he also told me I had 6 cavities.  I then went to another doctor after finding out the other one was not in my dental insurance network and she informed me that I had 1 cavity.  It was at that time, I showed her the text from the other dentist with the charges to fill the 6 teeth.  I don't know where you are from, but here in California, it's a racket.  They are worse then used care salesman.  On a good not, I think I'm on a good road now with the ENT.  Good luck and take care.
    • renee77108
      renee77108 ckitefly

      Posted

      My dentist is very good and always educating himself. He's a regular and holistic dentist. However, he and his staff were also stumped by my oral LP and I was treated with several things and had the deep root cleaning too. He then referred me to a periodontist. She is also very good...but there are really no treatments for this other than steroids which I'm reluctant to use as they have negative side effects and are not a cure.  I'm keeping mine quite well under control without them and just keep my 3 month appointments to keep an eye on it.  I've had two inconclusive biopsies...oral LP or benign mucous membrame pemphigoid (a really nasty disease).  They are still not sure which it is.  I have found that I have been overdoing on vitamin A supplements which can cause similar symptoms...so I'm doing a 3 month cleanse to get the excess out of my liver to see if that makes a difference prior to subjecting myself to a 3rd biopsy. So check your supplements to see if maybe you are ingesting too much of something...just to be extra sure...and safe.
  • Guppy007
    Guppy007 jason05355

    Posted

    Hi Jason, I do understand, OLP is terrible at its worst, really terrible.  I have had it on and off for many years.

     I have had some good results with Homeopathy, it literally has sent every flare up away,  and so the best advice I can give you us to go and see a Homeopathic doctor as soon as you can.  If you look online there is a Doctor in India that specializes in Homeopathy, and it looks like he  has had amazing results.  If you do a bit of digging around you will find it, people dismiss Homeopathy, but I can promise you it works, and it worked for me for a long time, but really your diet needs to be looked at carefully too, too much sugar can cause Candida in the gut for some people, and that in turn causes problems within your body, which I believe presents itself as OLP, you can Google that too.     Try seriously cutting down on all sugars for a while, and see if you notice an improvement after a month.  

    Also stress is the worst thing ever for OLP.

    • Guppy007
      Guppy007

      Posted

      your welcome.....
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