What do I do now?
Posted , 6 users are following.
I was diagnosed with lichen planus almost 3 years ago. it has changed my whole life. I am now considered disabled. The only way I can get around 90% of the time is in my wheel chair. I was diagnosed through biopsies, 3 of them from different places. It affects my mouth and the bottom of my feet the worst. I do have other spots but they don't flare up half as bad as my feet and mouth. I've seen sooooo many kinds doctors. I've tried all kinds of treatments. most medicines affect this in a negative way. I've changed my diet completely. In bed 75% of the time. I'm tired. any SUGGESTIONS anyone
1 like, 14 replies
melhell patricia43845
Posted
WOW...I'm so sorry you're having such a difficult time with this awful stuff. I WISH I had suggestions for you. I was told by my dermatologist that at some point it would go into remission for a period if time. Took about a year for my skin lp to do this. I suspect I have oral as well but have not done biopsy to confirm. Had a scare with genital as well but that turned out to be another autoimmune disease. I sincerely hope your condition improves soon.
patricia43845 melhell
Posted
thank you so much. it gets hard at times but I refuse to give up before we figure this thing out. Thanks a bunch
greg73500 patricia43845
Posted
For the mouth : You can dilute some Calendula Tincture into some clean water and use it as a mouthwash 3 times a day. Calendula has shown promising results in some small scale clinical trials where oral lesions/infections are involved. You can find Calendula Tincture in specialized health food stores or online.
For the skin : I cured my own LP by taking St John's Wort capsules over a 5 to 6 month period and it has never returned, 6 years after I initiated the treatment. There is also anecdotal evidence that a bioflavonoid called Isoquercetin (which is a part of St. John's Wort, and many other plants in nature), may be useful to combat various skin diseases. Isoquercetin is just starting to be available as a supplement but is still pretty tough to find. If you decide to try it out, you probably won't be able to find it elsewhere than online. As for St. John's Wort, it's easy to find even at your local pharmacy, but few people are aware of all it can do for your health in general, asides from being well known as a sleep aid and mild anti-depressant; it is generally not recommended if you are taking other medication (check with your pharmacist).
I suggest you read about all this by doing your own in-depth googling. Most doctors do not recognize food supplements to combat complex diseases, but I and many other people are living proof that they can!
Good luck,
Greg.
patricia43845 greg73500
Posted
Thank you. I love it. All of my relief not some but all comes through people and of course prayer. I appreciate anyone that takes the time to help me with this. I'm all over it now. I can't wait to let you know how it worked for me. Thanks again...
anne13482 greg73500
Posted
Totally agree, Greg. It's amazing that medical pharmas are now acknowledging that a few herbal remedies do have positive effects.
I don't use anything or take anything at all now. Seems everything other than totally natural foods cause a reaction. But have used St JOhn's Wart a few years ago. I felt it helped with another issue I had.
greg73500 anne13482
Posted
Yes Anne, I think it's great that a better understanding of plants in science is slowly leading to the acknowledgement that they can indeed be helpful against several diseases. It takes time to change certain anchored beliefs, but we are getting there, as the evidence is growing.
However, there isn't and never will be a magic bullet for everyone, partly because as we age, our bodies "rust" just like an old car, and at one point, even the very best anti-rust treatments become useless, when the old car is truly falling apart. I'm using this analogy because plant-based anti-oxydants are now being hailed as a solution against so many ills, eventhough this solution will only yield temporary results in the end. We can only remain humble with this reality in mind, while trying to minimize any suffering on the way there.
I'm glad you also experienced some of SJW's benefits at one point in your life. Those that I have personally experienced were so extraordinary (LP, LSC, and emotions in general), that I now grow the plant on my own patio, and use its flowers to make my own extracts! Lovely, lovely flowers indeed!
Cheers,
Greg.
deb28182 greg73500
Posted
Hi Greg
How many drops of Calendula tincture do you use fir mouth wash?
Deb
greg73500 deb28182
Posted
Hi Deb,
There was a successful clinical trial in 2013 that you can find quite easily by googling "Evaluation of Calendula officinalis as an anti-plaque and anti-gingivitis agent".
In this trial, they told patients to mix 2 ml. of Calendula Tincture with 6 ml. of water, for each dose of mouthwash. If you have access to a measuring pipette (often found as a kitchen aid), this might be a better starting point to dose, rather than just using the unmarked dropper that comes with your bottle. You might then want to adjust that dose slightly based on your preferences/tolerances to the tincture. With some products, you might also find how many drops of tincture correspond to 1 ml. on your bottle of tincture.
Hope this helps and may you find the best relief!
Greg.
greg73500
Posted
Deb,
There is also a popular approximation on the web that claims that 20 drops corresponds approximately to 1 ml.
So if you want to follow the example in the trial, you would mix 40 drops of tincture with 120 drops of clean water for each dose of mouthwash. That's a lot of drops to count from a dropper every time, so again, using a more accurate pipette would obviously make things a lot easier.
Greg.
anne13482 patricia43845
Posted
Hello, Patricia. I am so sorry to hear how badly effected your life is. I only have the mouth OLP and I know how much that has changed my life. Probably, like you, I can now only eat mushy food! And, like you, the only 2 or 3 things I tried just made it worse.
Where do you go to now. I wish I could answer that with something medically constructive, but, sadly I can't. My sister friend found his skin OLP did eventually clear up all by itself after about 3 years.
There are ppl on here who mouth OLP did improve after a period of time too.
So, I guess, all I can say is try to stay hopeful & positive. Get out & about as much as you can too. Even if it is in a wheelchair. Could you join a craft group of some sort?
Just having other ppl around and keeping your mind occupied for a few hours can do
much to help relieve stress & worry.
I wish you all the best for the future & pray that you will find some relief.
Kindest wishes
Anne.
patricia43845 anne13482
Posted
Hey Anne. Thank you for that encouragement. I did take up a few hobbies since then. Somethings I never thought I would be doing, but it is here at home by myself. I would love to take up crocheting. Maybe I could join that group. I started some bible classes also. This stuff will definitely put you in a dark place, but thankfully I always come out. Thank you so much
anne13482 patricia43845
Posted
Good morning, Patricia.
Pleased to hear you are building a social support group to help you through.
I'm a little unsure of saying what I'm going to because OLP & LP are such an individual issue. But for me, my improvements came when I stopped using any sort of medications & chemicals. Ignored all the advice about try this or that. It helped some but not me.
I do not use soaps/toothpastes at all now. I only shower & suds from shampooing my hair are enough to ensure I don't ponk!
I'd had a vulva problem for yonks. But on and off. Then I read an article in the Health section on our daily N/paper. The columnist (Dr) answered a woman with same query. He said stop wear cotton briefs and never wear BLACK ones! Apparently the black dye has a chemical in that other colours don't. I though - OK
no harm, I'll give that a try. Cured within a week and never had the problem since. I wear any colour upto light blue but mostly white. & always buy 'modal' mix.
I now also put white shoe liners in - no problems on my feet.
Once I went onto fresh food only (nothing spicy) cooked & mashed or into soups, it took time but gradually my mouth improved. Up until about a month ago, I was eating semi solid foods. I'm having issues at the moment because I tried a toothpaste for the first time (natural one) in a year and my OLP flared up! Back to the mush now! I clean my teeth gently with a saline solution but floss 3 times a day.
Can I also mention I am a Coeliac so have been on a gluten free diet for many years.
So that is my life - natural, gentle, no medications, no 'natural remedies'. Just leaving my body to get on with healing with itself. Seems to be working or me. I do take pain killers if I need to & obviously I would take any necessary medication.
BUT, remember, that's just me. Other things have helped other people. I'm not advocating my way or saying it will work for you. All I know is once I stopped all the 'experimenting' and trying this or that and just said - ok body, I'm leaving you to it. I'll just make sure you don't have to compete with medicines or chemicals or processed foods/spicy stuff. It scared me, I must admit. BUT I felt emotionally & mentally relieved. It removed one layer of stress for me. And life has improved.
patricia43845 anne13482
Posted
This has let me know that I am on the right track. I was only wearing white cotton socks and underwear. Recently I started wearing black socks because my husband had some that was thicker and more comfortable than mine. I just started making my own soap, shampoo, hair conditioner and pain ointment. I have not tried laundry detergent. I have spent a lot of stuff and spent a lot of money. most of it has helped, especially my diet. Anything that causes inflammation I avoid. Every now and then I will just stop everything just to see what happens. It flares up really bad then. I don't know. I do understand that all of our bodies or different what works for one, it may not have an effect on another one. I am ready to stop most all stuff and try something else. Thank God my body let's me know very quick what's not agreeable. I've learned so much about food chemicals and medicine in the last few years. Again thank you. I appreciate you sharing with me
patricia43845
Posted
Hey Greg. I wanted to give an update on the medicine Isoquercetin. I did find it and have been taking it now for 12 days. I'm really hurt. It did not work for me this time around. I've had a flare up since I started taking it and it has gradually worsened. I ended up having to stop it. Last weekend I worked a lot in my garden so I know that had some affect on my feet, but normally a few days in the bed would help. I'm gonna see if it gets better after not taking it a few days. If it dosen't get any better then I will know it wasn't the medicine and I will start it again. Thanks again