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LP and OLP for over 20 years

Posted , 8 users are following.

SXman
SXman

Hi everyone.  Firstly I am sorry to hear that so many of you suffer with this horrible disease or virus or whatever it is!  I first had LP when I was 32 all over my body.  It left scars after 18 months which mostly disappeared after another year.  However I still had the odd couple of spots on my legs which used to flare up from time to time.  For the last few years I get a flare up every other year, it has mostly been just on my legs but after an operation on my feet a couple of years ago the spots got a lot worse and all over my feet, ankles and lower legs.  I then had a clear year and now again this year (at age 55) it has come back over my feet, soles, ankles, lower legs, back, front and wrists. No apparent reason. I have never changed my diet. When I have given up alcohol in the past for short periods of time, I haven't noticed any difference.  Creams just make my skin more moist, so that does help. I do find that heat, scratching and any cuts will cause a flare up over the area. I use topical steroids when the spots are really bad which give relief and have been to a couple of homeopaths in the past, but not sure if they actually help really.  I have always had streaks in my mouth but not many sores thank goodness.  I do however suffer from gingivitis and am losing a couple of teeth soon which I am v scared of in case this brings on ulcers. Has anyone else had LP for this long?  I don't want to alarm anyone in thinking everyone will get it this long, because from what I've read, most people only get it a short time.  You do learn to live with it but every now and again it does get to you. I think mostly its the embarressment of trying on shoes in the Summer when people just stare at you as if you're infectious! or just the fact you have to wear long trousers and dresses in the Summer months to cover up. Do all of you do the same thing?

1 like, 14 replies

14 Replies

  • Currumbin
    Currumbin SXman

    Posted

    from currumbin

    Hi, I have to say, Yes there are many readers here who have suffered as long time.  AND i do understand all what you have written re LP and the treatements.  I am now 59 years  although only new to the LP disease on the skin and all over my body the flare up are terrible.  i have had LP since July 2014 but, its been terrible as i diagnosed incorrectly from the July,   Treated for Lice, Scabies, Flea bits the even said.. But, It took to Late January 2015 for some GP to finially get the medical results of LP... (at last)... so from January 2015, i been doing the same routine with treatments as (all ) of the others.. With no results.  Many time worst the skin became more itchy, red and other side effects.. such as hair falling out, constipation, my whole body buring up from inside of me.

    Yes weather is a major factor.  SUmmer is very hot, so that means i can not wear garments.  Have to live in loose cloths or my swim garment.  Winter i freeze but have to keep the skin more moist with oil on the skin.  As for the teeth.. i am the same.. lost two teeth within a week, and so scared that the LP will move into my mouth.. (whcih i have to say I been blessed not to have LP there so far).

    I have to also agree that when people look at your body and skin (in my case my arms)  the look in shock.  they move away.  Summer was hard for me to wear garments as even the cotton seam to make me itch.  When i went to the shops people just looked at me with the rash or spots... and i could see them just looking at my arms.  (( that is when i started to shop late at night or on line). 

    Stress sets off my LP also.  right now i have work pressure... and its making me not sleep and itch.  (( so)) now i giving myself only one month to settle down.. OR... I will take the biggest gamble in my life and leave my job. 

    This also causes Fear in my but... I just reached the point of itching my skin so much that the skin hurts to wash with cool water.  and I try not to itch but when i do that hurst big time also.

    Hay all readers... Why can we as a group .... put out a HELP call to the Medical researchers  and get them to take some observations and start to find out what really triggers LP..... ONce we understand the trigger... We have a hope for proper treatment...  THE treatment now... is really NO GOOD ,  just read all the comments about treatmetns.... We are all seeking each other advice to find WHAT is really worKing for Skin  LP.... (in my case)  that 75% of my skin is covered in the rash and itchy.

    Cheers to all.  keep trying what ever works for the individual... will help you get through one day...  

    • SXman
      SXman Currumbin

      Posted

      Hi thanks for replying. I too have quite a stressful job (off and on) but I don't know that giving up a job that you enjoy will necessarily help.  There is no real proof that stress brings out the rash more. I think we are all struggling to find a cause or as you say a 'trigger', but I'm not sure that stopping things in our life that we enjoy is the right thing to do. As we get older more and more things stress us out, so I think we just have to learn to control our stress levels. My son would tell me to be mindful?  I know that's the 'in' thing at the moment 'mindfullness' I refuse to diet and worry about what I drink all the time.  I want to lead a normal a life as possible so I may try some mindfullness. After all taking five minutes out of a very busy day to stop and reflect wouldn't do any harm I'm sure!  
  • greg73500
    greg73500 SXman

    Posted

    The title of your post is what triggered my interest, because I also suffered for 20 years of a slightly different disease called Lichen Simplex Chronicus. I also had it all over my lower legs and I do remember one of my dermatologists mentioning long ago that he was no longer certain if my diagnosis was still LSC, LP or perhaps a combination of both, based on the appearance of the lesions.

    Nevertheless, I have completely cured myself of the condition 2 years ago after following a 6 month oral treatment course with 600mg of St. John's Wort extract. Please see the details in my post in the alternative and complementary medicine forum if interested.

    The reason I believe SJW might be helpful (I'm just throwing the idea out there with very little knowledge about the etiology of this disease)... is because researchers at the University of Michigan have recently uncovered the role of the Delta toxin in most varieties of atopic dernatitis. It is a toxin produced by the bacteria Staphylococcus Aureus. This bacteria is known to be present in the wounds of about 90% of atopic dermatitis patients. It is extremely resistant to all conventional antibiotics and the toxin causes the degranulation of mast cells in the skin, thereby liberating a whole lot of histamine.... So you can imagine how itchy people become when that happens.

    St John's Wort contains a very powerful molecule called Hyperforin that combats Staph bacteria, even at very low blood plasma concentrations. Besides being a powerful antidepressor, SJW has also been known to repair damaged skin for centuries. Therefore, it might be worth reading about it and giving it a try, if you are not taking any medication that might interact with it (please read The warnings on serious medical websites or ask for professional assistance).

    Best of luck!

    • SXman
      SXman greg73500

      Posted

      Thanks so much for taking the time to reply. I will certainly try the SJW!
  • Sasr24
    Sasr24 SXman

    Posted

    Hi  Even though I have only had OLP for two years, I know it can't last much longer.  I am just hoping it won't.  I know many people have flareups over the years.  No one who doesn't have this autoimmune disease can understand it.  It is sad that it gets so little attention.  Mine has been 99% oral.  In the beginning I had a few places on my legs, but nothing noticeable.  However, before I was diagnosed, over a year period, I had three breakouts of ulcers in my mouth and vaginal area, which I know had to be either OLP or some other autoimmune disease.  (My doctor tried to tell me I had Herpes, but I knew that wasn't possible.  It is absolutely frustrating when they will not listen to you.  I wish I had insisted on a biposy back then.)

    I feel for you and understand wanting to cover it up.  If it makes you feel any better, in the summer I wear only capri pants.  I never wear shorts because my veins look terrible! :-)

    • karen41728
      karen41728 Sasr24

      Posted

      Hey

      I know what your all going through with lp I have had it 13 years now was diagnosed by my dentist who sent me for a biopsy although I didn't know I had it then but the last couple if years Iv known about it my mouth burns with spicy foods my body itches it's just a nightmare, also the same time I was diagnosed with lp I had treatment for abnormal cells which were found on a smear test, so the two are related anyone else have this xxxx

    • kelly74656
      kelly74656 Sasr24

      Posted

      I started about 16 years ago but the doctor told me it was herpes also, I knew it wasnt and then finally two years ago i had a biopsy done of my mouth and they discovered i had lp,, the mouth started a month after i had root canal done and i always wonder if that was a cause for the mouth to break out
    • karen41728
      karen41728 kelly74656

      Posted

      Hi Kelly

      Do you have lp anywhere else and have you ever hD a problem with abnormal cells after a smear test, also how old are you Kelly

    • kelly74656
      kelly74656 karen41728

      Posted

      I am 53,,my rashes are always located above my left buttock,,and of course my mouth and yes one year i had an abnormal cell test,,, we did nothing about it and when it was redone the next year all was fine and has been ever since
    • karen41728
      karen41728 kelly74656

      Posted

      Thanks Kelly I am 56 and I had leep for my abnormal cells and I got this lp around that time
  • Currumbin
    Currumbin SXman

    Posted

    Hi ALL,

    I just reply to aLL, comments. THANKS you all have a great deal of knowledge to share about LP ask Greg73500  a question about St John Wart.

    Do you meaning the St John Wart from the herb shops or some chemists here in Australia. This is not a perscribe medication?

    I am currently taking ( St Mary Thistle) to help the Liver and (Turmeric herbs)  of course (Withania) for energy and reduce the stress. 

    There is a UTube article on (Leaking Gut) which is the starting point that  discusses the  Skin problems.  (DOES not say what triggers the leaking gut or why the liver or kidneys have not functions correctly).

    THis is where the IDEA of diet and detox the body comes into discussion AS i gather a theory must connect with (the spills of what ever... goes  into the blood stream and therefore has to come out via the skin / mouth, but for some its the finger nails and or toe nails.  And for me its effect the Hair. 

    I often too wonder if medical research has just given a (genetic Name LP)  but there must be more to this disease as my hair breaks off from the roots big time.  I am a woman in her 59 years age bracket.  AND before this i was healthy, fit, full of energy, and eat mainly fresh food.  ((Ps  I mainly like coffee and water and of course the biscuits)...Do not like the tatse of other drinks. 

    So.. as for diet and fluids... Gee, I do not have a lot any way.  I do not have a weight problem.  But i do get stress a lot  - basically all my life i have been nervius and stressed.  So  I think stress does have an effect on the L P.. and although a comment has been made that stress can not be pointed out.  THERE is no proof to that and there are many doctors who will say Stress does trigger this LP same with traumatic events in a person life or many traumatic events.

    ANy way... still would like to know (where) to purchase St John's Warts  

    ANy way... i just need to know if you are speaking of (St John Wart) and what dosage have you taken?

    As for any anditobtics ( i have become so over Sensitive to medication and have proven that its actually makes the itching worst) that now I have to only look for alternative herbs to

    • greg73500
      greg73500 Currumbin

      Posted

      Yes, St. John's Wort is an herb... In fact, many call it a weed eventhough its beautiful flowers don't give it that appearance. No, it is not prescription medicine in most countries that I know of... You should be able to purchase it in dried form to make your own tea, or in oil form, to apply on your skin; both should be available from your favorite herbal remedies shop locally. But what I have been taking is the St, John's Wort extract in pill form, just like you have pills for just about any medicinal herb on the market. Those are generally available at your local drugstore, if it has a decent natural products counter. Otherwise, you can order the pills over the Internet from a reputable natural products supplier.

      What I was trying to explain above, is that new research has uncovered a possible explanation for many complex skin diseases, and it has to do with the bacterial invasion of damaged skin. Such bacterial invasion, through complex biological mechanisms, would then cause allergic skin disease. You can type "University of Michigan and Delta Toxin" in your favorite search engine and you will then be able to access the complete scientific articles.

      What St. John's Wort might do for you, as I believe it has done for me since I am cured, is to help your body get rid of a potential skin infection, reduce the inflammation, and then help repair the damaged skin layers. This process takes time... Don't expect the instataneous results you would get from an Aspirin tablet against a headache... It took 6 weeks for me to notice positive results, and then 6 months to be able to affirm being cured within reasonable doubt. I now have brand new skin everywhere the lesions used to be, the scars are all gone and I don't expect the disease to reappear anytime, since I had never experienced such a long break after 20 years of suffering.

      Hope this helps and all the best!

    • greg73500
      greg73500

      Posted

      As for the dosage - forgot to answer - I took 600mg of St. John's Wort Extract/day... That's 2 pills @ 300mg each, an hour before bedtime. I obviously can't promise you that such dosage will work for you or anyone else... But that's what worked for me.

      Also, most people who take St. John's Wort, take it to treat depression, not skin disease, and they usually take 900 or 1,200mg/day... That's 3 or 4 pills.

  • Currumbin
    Currumbin SXman

    Posted

    Hi,  Thanks for the clarity on the St John warts herbs.  Yes, i understand the herb role in body and the multi uses of any herb.

    Also I will look up University of Michigan and the Delta Toxin discussion.  Yes, i am always interested what other Countries are researching and unfolding new discussion and possible suggestion for treatments.  I do FIND Australia, a bit behind in some of the up to date discussion and treatments.  Of course, that only my opinion.   (( in saying that I do have a very good GP  who is working with all the alternative methods and UV light theorpy plus dermatologist suggestions.  BUT i have to say the dermatologist have been a HUGE wase of GOOD money and all i seem to get is pointed into dangerious drugs with major organ side effect for life.   ONCE again, this is a discussion only and I respect that all treatment will have a different responce to (any) individual.

    Just like all of us.... Just want to have relief during the winter months (and) be able to wear garments again to keep me warm. 

    Thanks  I will now look into the university research paper  

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