Recently Diagnosed with Lichen Planopilaris (scalp)

Hi Sandy, I haven't had a chance to read other post as I haven't been on this site for a while and I don't know your knowledge of this autoimmune disease but one thing I would highly recommend is ridding your life of stress and taking a good probiotic with meals and eating a good greek yogert. Probiotics have really helped me with my LLP. Also I'd recommend talking to your Doctor about getting on a oral steroid temporarily for extreme cases or/and a local steroid like a foam or cream. The foam works really well for me and I've also been on a few different rounds of prednisone. However I haven't show symptoms for 18 months. I still take a probiotic and focus on a stress free life but no steroids in over almost 2 years.

Thanks so much for the information.  I haven't taken any of the drugs because I'm afraid of taking anything that may affect my liver.  I did try the steroids injections and it seem to help a little.  I gave up on the clobetesol cream.  I will try the probiotics, but I don't eat dairy, so can't do the yogurt.

Sandy, I was having problems with digesting lactose as well so I switched everything in my diet. The way Greek yogurt is processed it has almost no lactose in it and it feeds the probiotics bacteria to help it grow. Ever since I've made the switch my IBS has stopped and I had severe IBSD. The whole prosses takes time to work but I can promise things will get better.

My current regimen is one probiotic in the morning and one at evening. You have to work up to two a day. I did one a day for 2 a month then started the two a day. At first your gut will feel all kinds of weird but stick with it it will get better. I also take a flax seed tablet which helps the blood flow and repairing the gut just to name a few. Im also focused on a high protein diet with plenty of fruit and vegetables. A multivitamin help to supplement nutrients and isolate whey protein for protein definition. Isolate protein has the lactose removed from it. Hope this helps.

Thanks again.  I eliminated all diary because I read that it was bad for auto immune disease.  I don't have IBS or lactose intolerance; so I will give the yogurt a try.  I've read that whey protein can cause some problems so, I use plant based protein in my smoothies.  I also use flax seed in my smoothies as well.

 

Np, just to be clear I never had a lactose intolerance until the development of this LP.

YES, whey protein does cause problems because the lactose is not refined out as it is in isolate whey protein and Greek yogurt. By cutting out dairy in your diet you are losing out on a lot of beneficial vitamins and bacteria your gut needs.

If I can ask you a question,

We're you on antibiotics in the past? Prior to being diagnosed.

It's all so confusing.  I've read Dr. Wahl's book on auto immune disease, which says to cut out a lot of foods, but is high meat diet.  And then there's a Dr. Brooke Goldner, who talks about a plant based diet that cured her of her auto immune disease.  I don't know which way to go.  All I know that the bald patches are growing in numbers.

I haven't been on any long term antibiotic treatment.  Very seldom for respiratory infections.

The reason I ask is because even a short term of being on antibiotics will kill all the bacteria in your gut. Which leads to a over growth of bad bacteria and a whole lot of other health issues in general that the doctors won't tell you.

Ever since I have been focused on my gut health, taking probiotics, cutting down on sugar and processed foods the LP has not returned. LP being a autoimmune disease means your own immune system is in a state of disarray "fight or flight" reaction Something triggered this heightened state, stress, an over use of immune boosters like vitamin C, coconut oil or others. Even fillers in supplements can throw that switch that tells your immune system to start attacking. In short, need to find what triggered your immune system responses. I did a total cleanse, I stopped all supplements and food for a week then started to reintroduce things back one at a time, that's how I found out I had an intolerance for lactose. It was a long process but I've been symptom free for almost 2 years.

that's what I assumed, that something triggered it.  I did start putting turmeric and coconut oil in my tea in the mornings.  I did that for about 4 months before I was diagnosed. But I stopped it and I'm still having the bald spots grow in number.  I too will do a cleanse and try to improve my diet.  I hope somehow soon I can figure it out, because I'll be bald pretty soon.  I have lost so much hair.

Garbear, is the probiotic your taking OTC? What # of active cells is it? I have been taking 2x/day for a year and have not noticed any stomach reaction or OLP improvement but maybe it is keeping LP at bay? 

I also have also been eating a probio yogurt daily but it’s not a Greek yogurt . 

Stress free life? I’m trying!!!

Can you tell me how long you had LLP befor noticing an improvement?

Thanks

Hi Trudy, yes the probiotics that I'm taking is OTC and has a count in the 5 billion anything less and they're not as affective. Once your use to a lower count up it to a 5 or 10 billon count.

Once I started taking probiotics I noticed an improvement about a month or two later. I saw fewer and few breakout till one day...none. I still get a spot every now and again but nothing like I had. I also was on prednisone around the same time which I believe helped reset my immune system also. A good yogurt will help feed the probiotics also I'd suggest taking your probiotics with a meal. This will insure the max amount of probiotics live through the acidic environment of the stomach.

I eat the Greek yogurt because the lactose is processed out, the protein is higher and the live culture are more abundant. Hope this helps, take care.

Sorry to hear that Sandy, I hope things turn around for you. This immune disorder is stressful to say the least. If i where in your shoes id stay away from the turmeric and cocanut oil and any other immune boosters for awhile. Try talking to your doctor about immune surprising steroids. I do believe thay helped me reset my immune system. Best of luck to you.

Thanks so much!  

Tumeric is wonderful for inflammation. So is low dose naltraxone up to 4.5 mg. Praying for change in hair, but definitely helped irritation. Use a tumeric that has black pepper so you absorb it. Doctor's Best brand is good - 2 tablets morning, 2 night.

Thanks for the information.  I have a suspension that maybe the coconut oil and turmeric I started taking every morning may have caused the problem.  The LPP was diagnosed after I started using these two items.  Of course I can't be 100% sure, but that's the only thing that was new to my diet.

*suspicion