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Burning sore lips

Discussion in 'Personal Experience with Herpes' started by Egpal2, Aug 15, 2012.

  1. Egpal2

    Egpal2 Newbie

    Hi, I despitely need your help. Back on July 4th I broke out with a cold sore. I grew up having them and have not had a break out since 2007. As of the 5th of July I was placed on Acyclovir for 5 days. I also used an over the counter cream such as Colgate Orabases to help with the healing because the sores were already present. My bottom lip never really healed, it was always staying red and sore without the swelling.

    I went back on Acyclovir for another 5 days after 7 days of finishing my 1st dose of medicine, because my lips were burning and tingling again. I believe I was getting the sores back due to not replacing my toothbrush and using the lip stick that carried the germ on them. After my 2nd dose my lips continued to be sore like a burning feeling and the spot where the cold sore cluster broke out was and is still a little white spot there. Well needless to say I called again the doctor just to get on another medicine call Valtrex. I took 2 tablets twice a day for one day and within 1 1/2 days later my lips started burning again. I went on a 2nd dose of Valtrex and then another. My lips are not breaking out with any clusters of cold sores they are just burning constantly. I also used orajel to help with the burning without success.

    So I’m not done yet. I went now to a Dermatologist and she said to use Trimacinolon Ointment and Acyclovir at the same time. She’s saying it’s not a col sore and I had to have had a allergic reaction to something I ate. She stated the ointment will clear the sore red burning effect and it will also break down my immune system and cause more cold sores so to make sure to take the Acyclovir 3 times a day. Well it’s been already 7 days and my lips still feel the same and sometimes worse. I have not ate or drank anything different then I’ve done for well over many years. I ‘m 45 and no signs of Post Menopause.

    Can anyone help out to what is going on with my lip. Sometime my upper lips feels burning going on, but is not consistant. I am just having no luck with what I am doing so far. Please help
  2. GntiNh

    GntiNh Staff Member

    • Super Moderator
    Did the dermatologist do a swab / culture of the sores?
  3. Egpal2

    Egpal2 Newbie

    Sore lips

    Hi, thanks for replying. No swab test done. My lips are just red and sore with a burning effect in the inner part of my lip and is more centered about a total of an inch long. My upper lips get effect I think by my lips touching.

    I recently just got off the phone with the Dermatologist and I am going to get a prescription called Clobetasol .05. I have to take it twice a day and if no change within 2 days to call back. :confused:
  4. GntiNh

    GntiNh Staff Member

    • Super Moderator
    Can't understand why they wouldn't do a swab test, however expert the expert is suppose to be no one can say by visual exam "that is 100% HSV".

    Hope the new script helps
  5. Egpal2

    Egpal2 Newbie

    No luck!

    Seems that what ever I do it only subsided the effects for just a couple of hours. I can drink water and my lips just burning all over again. I called the doctors and still have not got a return call. Pharmacist told me that he didn't know if there was anything else that could be done. I had a very strong ointment.

    I have a question, how can they swab test if I don't have any cluster of sores? My lips are just red and sore and burning. No sores in my mouth or on my lips. I am just so amazed with all I'm taking and took that it's not cleared up. ANY idea as to what it might be?

  6. HappyAt56

    HappyAt56 Newbie

    Hi, Egpal2! I've been going through the same exact thing. It started last spring. The extreme burning lasted for more than a month. No sores. Just burning. My doctor did not do a swab, either. She did a blood test, which shows HSV1. I have that in the genital area, so I'm still not certain that is what's going on with the lips. I had this problem start again over a month ago with no relief. Dr. put me on 1000 mg valacyclovir 2xday for ten days. It helped, but burning started again as soon as I finished treatment. Sometimes it feels like there is a sore in the corner of my mouth, but I can't see anything. Does anybody have anything that has helped with this problem? I'm still not even certain it really is HSV1.
  7. GntiNh

    GntiNh Staff Member

    • Super Moderator
    A swab test could still be done but it might be inconclusive as there needs to be enough "active" virus for the test to pick up from the swab.

    Did they do an allergic reaction test (RAST test blood), skin prick test, patch test?
  8. Egpal2

    Egpal2 Newbie

    Still feeling the same

    No have not got that far. Finally got a call back from my Derm Doc. and she is still unsure what to do. I was advised to use the ointment 3 days a day. Well now my inner lips are thinning from the Clobetasol .05. So as of now I'm not using it. Burning still the same along with the redness. She was talking about putting me on some medicine which will help with the nerves. Don't remember what the name was. She is advising with other doctors to brain storm. Will keep you posted. :(
  9. Egpal2

    Egpal2 Newbie

    Well today is Thursday, August 23rd and yesterday got a call from my Dermatologist office. I was advised to try Monstrate 3 cream. It's the Myconozol 2% she wanted me to put on my lips. Two day prior I was advised to try Alcortine. Seeing I have no insurance left under prescriptions I had to go into WALMART and use my AAA saving card. I do not like CVS so Walmart is the next choice for me. The prescription was going to cost me $131 with the discount. It's comes in a 24 pkg and I only need 12. It would cost the same at $135 at my regular Pharmacy. They are unable to break the box quality up. So after trying to contact back and forth with my Dr, the above medicine was prescribed for me because of cost purposes.

    I also told my Derm Dr. assistant that I would like further testing either a swab test or blood something because it was never diagnosed other then I could be allergy to something. So today I have an appt at 12 noon. She is fitting me in during her lunch to see me. It just so happened the Dr called me while I was heading into my MD office for a physical and I even had the Dermatologist talk to my MD doctor. My regular MD said to stop all medicines and to take Claritin for 2 weeks once a day. Also to use A & D ointment for topical. I will be taking that info with me at 12:00 and see what the Dermatologist says. W

    Wish me luck!
  10. Egpal2

    Egpal2 Newbie

    Next step in Burning Lips

    Back from my the Dermatologist and she did a biopsy of my lip along with adding blood work to my MD list. I'll be getting BIZ level and FOLATE level checked along with routine check from having a physical such are Comprehensive Metabolic panel, Lipid Profile with Refl to Direct LDL, CBC w/Automated Diff and platelet, TSH, 3rd Generation w/reflex to ft4 and vitamin D 25 Hydroxy total. My Derm Dr feels it may be related to stress along with level being off. She mentioned about maybe going on Platex, however were waiting to see what the results from blood are. I also can not have coffee or any acidic food and drinks. I might lose weight.

    I also received information for Yale University School of Medicine Taste Laboratory. The title falls under Burning Mouth Syndrome. My doctor is going to see about getting me in for an appointment after seeing results from blood which I'll be fasting tomorrow and going at 8 am.

    Wish me luck!
  11. HappyAt56

    HappyAt56 Newbie

    I'll be thinking of you and wishing you much luck in finding out what's going on. I know how much my lips bother me, but yours sounds so much more severe. I'm so sorry they can't find out what's going on. I can tell just how frustrated you. Don't let it get you down! They'll figure it out for you!
  12. GntiNh

    GntiNh Staff Member

    • Super Moderator
    Hopefully you will get some answers
  13. Egpal2

    Egpal2 Newbie

    Sorry for the long delay in my results from the biopsy and lab results. There was no pathology just showed irritation. All my labs came back normal. My Dermatogist suggested to put me on Clonazepam which was the drug that the Yale University School of Medicine Taste Laboratory for Burning Mouth Syndrome used in their study. It says 70% of patients had used as a potential treatment. I was not convinced to take such a drug, so she prescribed Neurotin 300 mg to hel p with the nerves in my lips. I am to take one a day for one week and increase to 2 a day there after. Well I got the prescription on August 30th and I'm taking 2 a day now and still no change. My lips still burn and now I'm getting more convience that I might have this Burning Mouth Syndrome because of the dry mouth I have along with a weird taste in mouth. My tongue on the sides feel weird.

    So on Tuesday, September 4th I went to the dentist for our family cleanings and talked to my dentist about my problem. He referred me to a Oral Surgern. I have an appt. for Monday, Sept. 17th for a consultation. Another $80.00 added to the outrageous amount of money I'm spending, because I met my max on my prescription benefits and I have no dential insurance.

    Well, I'm just so frustrated with the process. I guess I'll just wait until Sept. 19th for my follow-up with my Dermatogist to see what were going to do next.

  14. JBnATL

    JBnATL Staff Member

    • Super Moderator
    It was nice to meet you in chat today. I hope you find out what is wrong with you soon!

  15. Egpal2

    Egpal2 Newbie

    Hello and been a bit busy with my kids and going to doctors. Well on Monday I went to the Oral dentist and he's gave me the bad news that I could have "BURNING MOUTH SYDROME" for many years. Of course he's tell me it came from me having the cold sore. I paid $80 for him to do nothing for me. He was suppose to send notes from my visit for my Wednesday, Sept 19th appt with my dermatology and didn't. Well anyway my followup was regarding taking Neuronotin. I took it for 3 wks .300 mg twice a day without any results. My dermatologist decided to just put me on klonopin 0.25 mg twice a day. The yale study showed that 70% of patients who took klonopin had good results. Klonopin (clonazepam) is a benzodiazepine and habit forming. It's considered a class 3 not a 2 but still didn't like the idea of taking the drug. I fought taking it at my last visit so I was prescribed the Neuronotin instead. Okay here's the part where it gets interesting. I took my 1st dose of Klonopin on Wed., 9-19 and today is Sunday, 9-23 and I have not felt ANY BURNING of my lips at ALL!!!! I have never felt so normal. The drug definitely is doing the treat, however my lips still show the redness and swellen. I don't like how the drug is making me feel. I still have to take the Neuronotin but now once a day until next Wednesday the 25th.

    If anyone has any advise about taking the Klonopin for the BURNING MOUTH SYDROME please feel free to reply.

    I have a followup on October 10th. I do not know how long I have to take this drug, but in the meantime I'm enjoying some foods I have been avoiding because of the burning. :)
  16. Egpal2

    Egpal2 Newbie

    Here's my follow up from taking Klonopin since 9-19-12. I been taking klonopin without the Neuronotin now one week after starting Klonopin, which is much better because I'm not overly tried. It was awful taking both at the same time. I'm still not experiencing any burning feeling. However, I still have the swollen upper and lower lips along with redness. I don't get how the Klonopin is suppose to heal my nerves in my lips. I must admit I've been having coffee and sauce along with other acid foods and no feeling of burning. Is that adding to my redness and swellen and the klonopin just masks it? Do wish I wouldn't have to take any drugs at all, but feel relieved that something is finally working. My doctor did say try to only take one and see if you have no burning. So yesterday, Saturday 10-13-12 I did do just that and no burning feeling at all, but after 8 hr my head started to hurt like a head ache on my left upper temple. So I decide to take my second dose and my head still hurt. I think my sinus are acting up. So I take Flonase once a day to help with that. I've been sneezing a lot and have a runny nose. I have seasonal allergies so this is normal for me. Today my eyes hurt with pressure and my head feels like in a cloud when my sinus' start to bother me.

    My next follow-up is in 2 month (DEC) so I guess taking Klonopin twice a day 0.25 mg is working for me.

    By the way my doctor has gotten 2 new Burning Mouth Syndrome cases getting mine. Amazing how this syndrome is effecting so many people.
  17. RockstarAlien

    RockstarAlien Member

    I got the cold sore virus recently and my mouth has started to burn all over
  18. GntiNh

    GntiNh Staff Member

    • Super Moderator
    You see you aren't alone. Hope it keep working - let us know how you get on
  19. Maeby

    Maeby Member

    Hi everyone... I just wanted to post here because I'm experiencing a burning mouth symptom as well. Mine has been pretty consistent in one corner of my mouth for almost 3 months. I've been on a low dose of Valtrex for most of that time, but recently did a higher dose (1000 mg 3 times a day I think) for 10 days. The burning has been pretty consistent no matter what I do. No actual blisters as far as I can tell (I got GHSV1 back in June). I have another thread called 'Burning sensation on lip' about this too. I just wanted to see how you all were doing... Happy, I think you posted on my thread as well. I will finally be seeing a dermatologist this week, so maybe they will have some insight. This is a horrible feeling, so it's comforting to know others are feeling it too (although I wish you weren't!)
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