Hello everyone, I have been gone from this forum for quite some time but I am now returning with some good news. I have finally controlled my EC. I don't feel that I am 100% cured (in fact, I don't believe there is such a thing as being fully cured because lips do peel or "shed" naturally) but I am definitely grateful that I am where I am in the fight with my EC.
Here is what helped me get over this. I will try to make this a brief post despite all the information I want to put out but, I can always be more specific with my information from any questions posted.
Also, I want to point out that I am in NO WAY endorsing any product I mention here. They are products that have worked for me and they may or may not work for someone else. I still believe that EC is an isolated case being how it is considered some form of an autoimmune disorder.
So after reading a lot of articles about probiotics I constantly read about how most of the probiotic bacteria dies in your stomach. So, out of a pill of a few millions of bacteria, maybe like some thousands survive long enough to get to your intestines where you need them the most. So I began to wonder about a possible timed release form of probiotic that would enable most of the billions of good bacteria to get to my gut. After searching for weeks, I found a probiotic that was very close to what I had hypothesized.
It was this one below. I bought it on Amazon.com.
This company claimed that their probiotic did this:
So naturally I was ecstatic because this was exactly what I was looking for. So I bought it and I tried it. Now, here is the interesting part. I am a truck driver and so, I am ridiculously busy on my route on any given day. So busy in fact that I can barely eat while on the road. This, however, worked in my favor because I was only eating like one meal a day usually when I got home. So, in theory I was fasting and not even knowing about it. I mean, by the time I got home at night I was dying of starvation, that is how extreme it was. My diet was not the best at all. In fact, I ate more garbage at night when I got home because I was too tired to cook. So, I can definitely rule out any "help" eating clean could do for me. But if I was starving then, in theory, the bad bacteria in my gut was kind of starving too.
Now, getting back to the probiotics. In two weeks of using the pills I began to notice certain changes. There was no more white lining inside the mucosa of my mouth and the mucosa began looking very glossy. I also began to notice the grooves in the skin of my lips returning. I wish I could say that I was jumping for joy at this point but, the sad reality of it was that I had practically given up on ever having healed lips again, and so, I was in a state of like "whatever, it is what it is." Being that this was the case I did not document when exactly my EC symptoms went away. But what I do know is that I have gone a year without any buildup, no excessive peeling, very little to like no white slime upon waking up, and very little redness from inflammation. I also rarely used any form of lip moisturization. However, if I felt uneasy about how my lips felt at any particular time I used a very small amount of the German version of Bepanthen.
It is also found on Amazon.com. I want to say that Amazon.com was my greatest ally in finding these sorts of products because they are NOT available anywhere here in New York where I currently live. And if they are then, I definitely haven't looked hard enough.
I also used a special toothpaste with no fluoride and no SLS (sodium laurel sulfate).
I used this one in particular:
I have to admit that, while it is a good & somewhat natural toothpaste, it doesn't get my teeth feeling as clean as regular toothpaste did. I also developed a bit of plaque and tarter on my teeth but, nothing too crazy that a regular check-up at my dentist can't resolve. But I can't blame the toothpaste either because, during one of my trials in seeing if the morning white slime was gone I wouldn't brush my teeth at night for a good few months. To my surprise I woke up with my mouth being free of white slime, and if I did have any it was like a few dots, not the excessive amount I used to have before.
Here is my proof, sorry if these pics disgust anyone, but they are for illustration and educational purposes.
In the pic above you can clearly see how much more normalized my lips look now. Unfortunately, you might also be able to see the scars from the many butchering biopsies I have had... only to end up pretty much "curing" myself in the long run. Go figure huh? :-(
Okay, now in this pic you can see how normal the inner mucosa looks and how it now ties into the middle portion of the skin of the lower lip. It is also very glossy and has no white lining inside. The natural bacterial flora of the mucosa has been rebalanced, as of now anyway.
I really want to say that, aside from fasting, I did not change my diet at all. I still ate loads of bread, I drank soda, and even alcohol at times. But I always tried to eat something healthy when I took the probiotic pills. I usually took the probiotic with my last and first meal of the day (usually at some time between 6 PM - 10 PM) due to being so busy at my job. Although, you can take these probiotic pills on an empty stomach, which I did also. If I took them on an empty stomach it was usually with water or Lactaid milk because I am partially lactose intolerant.
I know it is not a good idea to starve like that while operating heavy machinery but, I am definitely trying to work on that.
My EC does come back ever so slightly in the form of chapped dry lips when I get really sick, so, this is definitely a sign that it is somehow immune system related for my case. Although, I have seen the lips of other people who become sick and their lips tend to look pretty bad too so, I might be wrong about it being subjective only to me.
Folks, I have been an EC sufferer since 1994. This is the first time EVER that my lips have looked & felt this good. The best news is that I got my life back (thank GOD!), I now have a girlfriend (FINALLY!!!), and I can go out on a whim and talk to people without a worry in the world about how my lips look. I sure as hell was not very optimistic about ever getting over my EC but, I just couldn't totally give up, especially with me being as heavily attracted as I am towards science, and research. I can wholeheartedly say that I definitely nailed my EC in its ass as of now. I really hope that it continues this way and I truly hope that my information and experience helps someone else also.
I can't say that I am 100% fully cured or if I have only placed my EC in a temporary dormant state but, I will definitely take and can totally live with whatever percentage or EC state I currently have now for the rest of my life.
Here are my answers to your questions.
1) When I had my first biopsy done in 1997 it came back positive for excessive yeast, which is also known as candida albicans. The doctor at the time prescribed an antibiotic which only eliminated a part of my EC. My lips were worse than Daniel Miller's lips because I could detect a faint odor of decay under my nose from my lips and my buildup looked like green corn flakes. Man, that was so damn gross when I think back to that. :-(
The antibiotic the doctor prescribed to me only got rid of the green color & decaying odor part (which was probably a secondary staph or other bacterial infection) so the buildup on my lips then had a yellowish color to them with no decaying smell.
I had a culture test done like two years ago and it came back negative. I went to that particular doctor's office without brushing my teeth and had the white slime and everything. To my great surprise the culture test came back negative at the time so, no, I was not diagnosed with candida recently before my current progress.
2) No, I did not have oral thrush. I know what that is and thankfully, I did not have that.
3) I was actually planning on trying a liver flush from the late Dr. Moritz, or the one mentioned by Dr. Clark. Even though my condition is much improved, I am still going to try it sometime.
4) No, I do not suffer from acne. I have a couple of pimples here and there but, nothing too drastic.
I really don't drink water like I should. When I tell you that my diet was complete and total crap you wouldn't believe me. I rarely drank water, I drank high sugary juices and sodas, I drank liquor in the form of vodka and other rums every now and then, my stress levels were ridiculous because of my job. I mean, I was doing everything wrong towards me trying to better my EC. The fasting was actually something I was doing by accident because of my busy job schedule.
Looking for and trying a timed release probiotic was the only thing I actually came to a definite conclusion about.