This was supposed to be a succinct note on my progress for the Facebook page Healing LP, LPP and OLP Naturally which a few of us supported from the very start a few years ago. It now under the caring guidance of Ahmed grew into an amazing place for support, information, and friendship.
So back to the post – I ended up writing way too much for a FB post. Had to copy it here.
I thought I’d check in and share an update on my LP and LPP with our wonderful community. Since being diagnosed exactly 7 years ago in the Spring of 2010, I have considerably slowed down the progression of my LPP (Lichen planopilaris of scalp, a form of scarring alopecia). The skin on my body – LP has not had a flare-up since slowly calming down back in 2010/2011.
The healing has begun not due to the drugs I took and the steroid shots I had done in my scalp – those made things worse. I started seeing improvement a week after I went to a holistic doctor/naturopath Dr Mark Mincolla in Massachusetts. I think it is essential to go and get support from a holistic practitioner or a functional medicine Dr. At the advise of Dr. Mincolla I drastically changed my diet first – that was all I could do at that time, that was all I was ready for. And the reason I went the alternative route was that I could not see myself at 37 becoming dependent on pharmaceuticals for the rest of my life. I was at least open enough to understand that prolonged use of those will only cause more issues.
A week after starting my new diet the redness that was covering my whole body neck to toes was gone. Slowly over time the inflammation went away, the skin on my body cleared up and none of it ever came back. My scalp was a much longer process and is still 7 years later is a trusted reliable indicator of my health. If I have something I should not – within minutes I feel the itching sensation on my scalp – I immediately reach for my turmeric – within minutes the symptoms are gone, and a lesson learned – this my “NO” food. I still do cheat of course 🙂
Over time, as I was fine-tuning my diet, I also started to understand the importance of lifestyle and stress on managing my conditions. Today I still have about 90% of my hair, my guess is that over the 7 years, out of this 10% – I lost 3-5% of it during these last 6 years, but the majority of it was gone in the very beginning as I was getting a handle on my condition. It is absolutely not noticeable, no one knows unless I show it to them, of course my hairdresser knows. I am growing my hair out at this time after having is super short (a pixy cut fort he last 2 years). I am saying all this to show you that the diagnosis is not the end of the world. I even still color my hair. You can go to my FB page (friend me and see some of my pictures).
I only react to foods, and only on my scalp. In recent 2-3 years I was told by doctors that LP (lichen planus) eventually will spread to my mouth and my vulva. Back in 2010, I had some slight expressions of LP on my vulva and they are quickly faded to never come back again. Also, I do occasionally notice my gums being slightly sensitive, and my dentist told me that it is OLP (oral lichen planus). Although it never ones progressed to cause me any discomfort. I do oil pulling religiously every morning and I did remove my mercury fillings in 2016.
With so much gratitude and reverence I now understand that if I had not taken this holistic approach back in 2010 – all of these slight symptoms would have become blown out diseases by now. I only have realized some of this in the last couple of years as doctors became more aware of LP/LPP/OLP and I myself have learned and grew in my understanding. I always knew that it cannot be cured, but I did naively think in the beginning that I was in remission since I had no symptoms which I could connect and relate to LP. Now I see that I was just blessed to have found a way to bring my mind, body, and lifestyle into a somewhat of a harmony, where I now joyfully and gratefully live with my conditions. I also know that I am getting better and better at managing it – via my ever improving state of mind, my diet (constantly evolving), my lifestyle and my continuos research and learning. So I see myself keeping my hair, and perhaps if losing some extra – at an extremely slow rate. I used to think I will need a wig, but I no longer believe that, although I am now okay and open to it. 🙂
The first thing to do if you are diagnosed is to find a holistic practitioner to get you started on the path to healing. If you can not afford one, read the authors I will least below. They are all functional medicine doctors, my mentors and my heroes. Read their books (library is a great place to start), get audiobooks if you have no time for reading and listen while traveling/commuting. Study their blogs, use their recipes, follow them on Facebook – they are all have gone through what we are going through. All have dealt with an autoimmune condition or two 🙂
Here are the names:
Only three out of dozens, these three clicked for me, they speak to me, I understand and relate to their message. That is a start – but you will find more and you will find those who you can relate to.
Don’t get overwhelmed – focus on a diet it brings the most immediate relief. Stress management/spirituality, movement/fitness, lifestyle – all will come at the right time and all will be absolutely instrumental steps in your journey to healing inside and out.
Life is so f***ing precious! Be kind to yourself, to your body – take gentle good care of yourself – the rest will follow.
Good luck and God Bless.
To your health,