Replied by Petunia (Seattle, Wash.) on 02/06/2011
Regarding your post for Lichen Planopilaris, I was diagnosed with this about 3 years ago. Went to a dermatologist (had biopsy) who prescribed the plaquinel and clobetasol. As to whether it is fungal or autoimune... the dermatologist said autoimune, reading on the internet I think probably fungal. Dermatologist said it is more common in the northwest than anywhere else in US. Corresponded with lady in Ireland who had it also, note these are very similar climates. My occupation took me into homes that were often damp and had mildew, sometimes my face would just burn afterward.
I attacked this from all sides. Took the plaquinel, used clobetasol only occasionally. I made a solution of 25% lavender oil and 25% tea tree oil and 50% aloe lotion, note lav. and TTO are anti fungals, put this on and left over night with shower cap, washed in AM, a couple of times a week, more often if severe itching. (Now I am reading a lot about grapefruit seed extract... You should investigate this, also)
I took a good woman's vitamin and also added a formula I found on this site.... 3 times a day (10,000 mg biotin, 9.4 mg silica, 100 mg zinc) this is for hair growth.
Although I had my hair colored the dermatologist said coloring didn't contribute to it, I did notice each month that the itching and fall out was worse the week after coloring. A year ago I stopped coloring my hair and the fallout and itching stopped!!! I also started rinsing my hair with a solution of about 25% ACV and water, leave it on.... The smell goes away in a short time. Try to limit the extra products you use on your hair; be as natural as possible.
I also evaluated my diet and cut out wheat and dairy for several months. The lady in Ireland cut out anything related to yeast like wine, cheese, etc. etc.
Please know you have a friend here! I know how devestating it is to shampoo your hair and count 200 or more hair loss in one day!! You will get through this.... And yes, I did get some regrowth, my hair was very thick and curly, now it is quite fine and curly, and not as thick but it is what it is.....! Bless you!Replied by Lichenhelp (Fairfield, Ct) on 02/22/2011
Lichen planopilaris is a skin disease with no cure as of yet. The cicatricial alopecia organization doing the most research on it is CARF (www.carfintl.org/faq.html). You can cover bald spots with Revlon eyebrow pencil and Joan Rivers Great Hair day powder. To ease the redness, use coconut oil and also ACV with heather and rosemary oil. Pray that the current research nets results. I would avoid any steroids or plaquenil, they won't cure it, there is no cure. In my case, extended use of penicillin in my teens is most likely the culprit. Do not color your hair as it will inflame it. And stress definately accelerates it, so try to remain calm.
Read Ted's recommendations on this website also.Replied by Motivatedm (Phoenix, AZ) on 10/16/2014
I read through all your comments and experiences. First let me say, THANK YOU for sharing; your experiences have helped make me feel less alone with this condition. Second, wow and ugh. Wow, because it definitely saddens me to see huge patches of hair loss and not know if it will ever improve. BUT I am truly trusting in God for healing. (in addition to seeking medical assistance) And Ugh, It's frusturating the say the least.
I am currently having blood work done to look further into this "autoimmue" issue. I am seeing a dermatologist and natural path. It started small years ago and steroid injections helped and distressing my life helped. BUT there was a setback. 1) dermatologist suggested rogain and my 1 spot became infected and 2) my best friend passed away of cancer and I instantly got 3 more spots that have worsened. Although I am staying positively encouraged that I am still very blessed to have hair that allows me to hide my 4inche sized scarring bald spots. BUT I still want to FIX IT!! So we are going to try the topical solution and an oral inflammatory pill.
But I appreciate your feedback about the Stinging Nettle and Horsetail. I will definitely start this tomorrow. I was already using the coconut oil and a special shampoo from a scalp doctor which seem to help keep the area clear of any further fungus. I will also look further into the Backstrap Molasses. Thank you all for sharing. IF and WHEN I see more improvement I will share what, when and how much of whatever I am doing besides consistent prayer and positive thinking. I definitely agree that doing very little to your hair with regards to chemical treatments is probably very helpful. Unfortunately I get a relaxer every 6-8 weeks but my stylist is very careful to avoid the problems areas. But... outside of this I do very very little to my hair. THANK YOU again for sharing. Glad to know I am not alone. I sure feel like an outcast most days. I will continue to pray for us all. MotivatedM
Replied by Ann (Charlottesville, Virginia ) on 08/21/2016
Hi all, What is ACV, mentioned above? Also, a study at Wake Forest University on scarring alopecia, including that caused by LP, is due out in Dec 2016. I found it on clinical trials.gov. Best wishes!
EC: ACV = Apple Cider Vinegar
