Sunday, December 21, 2014

The Great Lip Struggle

After recovering for quite a few months and feeling like I have a fairly clear understanding of the issue at hand, I feel like I really should put this out there and let people know that if they have this problem, they are not alone. I usually reserve my blog for personal recipes/crafts/crochet stuff and not so much personal information, but this is important to me so I will stray from the usual just this once. I also feel like I need to document what happened so that I will have the information in the future.

This is going to be a pretty pic heavy post, because this can truly only be described in photos. Warning: these pictures are so embarrassing to me and I look AWFUL in them, but they are necessary to illustrate what we're dealing with here. My face looks normal now, and looked normal between these outbreaks. See? This is me a few months ago, on July 26. Normal face. Everything under control.


It all started with a fever blister in August of last year. I distinctly remember it. It isn't unusual for me to get a fever blister, but I hadn't had one in a long, long time. James's cousin was visiting us in Fayetteville and I spent most of the morning on the front porch holding ice on my blister. It seemed to have never erupted, but stayed there under the skin for about a month after that initial day.

By September, the awful-horrible-bad thing began. Exhibit A:
September 17, 2013. I woke up with a large portion of my top lip covered. Little did I know, this was just the beginning. At this time, I just coped with it and went on with my day. I upped my Lysine dosage and kept on keepin' on. By three days later, the blisters were gone.
This continued happening for quite some time.... blisters over a portion of my lip or just in one spot. I just assumed that my immune system was weak and started eating foods that would strengthen it- I even went as far as brewing my own kombucha and attempting to drink garlic tea. Ew. Ew. Ew. Do not try garlic tea. Just trust me on that. I also ate an entire garlic clove one morning and spent the rest of the day dry heaving.
So what you can take from that is that these blisters started to become emotionally and physically trying, but they were not that bad yet. Of course I didn't know that at the time.

Though I had been to my clinic about the blisters I already had and had been given low dosage Valtrex prescriptions, November 1 is the first day that I remember them being all-consuming bad. I woke up with them spread around my entire bottom lip. I immediately called and got a same day appointment with my clinic. My PA drew blood and confirmed HSV 1 (fever blisters) and that my blood/immune system was in good shape, so that was not the issue. He prescribed me a crap load of the highest strength Valtrex (common HSV med) that he could prescribe. He also referred me to a specialist, which turned out to be an epidemiologist. He did that accidentally. I was still pissed. I went to the epidemiologist without knowing it was the wrong type of doctor (an epidemiologist is someone who helps treat and prevent STDs. Apparently my stupid clinic PA was too dumb to know the difference between fever blisters and sexually transmitted herpes). While there, the doctor confirmed that it was HSV 1 (thanks) and drew eight vials of blood for testing before telling me that he really couldn't help me much and sending me on my merry way. I never heard from him again.

I was eventually referred to a dermatologist, who repeatedly swabbed sections of my lips and gave me a cream called Xerese. The Xerese was great at keeping the fever blisters away, but there was still an awful rash going on around my lips. Fever blisters were never the problem; they were a side effect of the problem. Fever blisters pop up when you're sick, stressed, or a cut or- in my case- a rash appears around your lips. My clinic and my dermatologist at Fort Bragg could not seem to understand this and continued to assert that fever blisters were the problem. I quickly learned that the Xerese would also cause pretty bad chemical burns. SO now the fever blister issue was solved, but a chemical burn problem was added and the lip rash was still ongoing. I had been trying out a few different products on my blisters/rash to see what would help. These products were witch hazel, rubbing alcohol, Vaseline, Eos lip balm, coconut oil, Carmex.... nothing seemed to work; some made things much, much worse. Things continued on this way for a while.

Nov 2
Nov 4
I began to notice a pattern when I received an Eco Emi box with some natural beeswax lip balm in it. My husband and I went out one night and I grabbed the lip balm to use, thinking that since it was natural it would be best for my lips. Later in the night, the itching and burning began. The next morning, the awful rash had come, and it was the worst it had ever been.
The night of beeswax application, Nov 23. Normal lips.
Morning of Nov 24, the beginning of rash
Nov 30, at the tail end of the horrible rash

It was so bad that I walked around with a handkerchief pressed on my mouth. If I did not sleep with the handkerchief on my mouth, I would wake up from the oozing. I know, super gross. It was unbearable. I could barely open my mouth. I didn't want to be seen in public. Everyone stared. I was horrified.

I began to suspect that ingredients of certain products I was applying on my lips was causing these outbreaks, but if you look on the ingredient labels of your everyday chapstick or lip balm products, there is a huge list of ingredients. How do you isolate those and find the one you're allergic to? You get a patch test done at a dermatology office. My dermatologist continued to think it was fever blisters and, subsequently, staph infections (the rash was infected with staph every single time I had it, but the staph was not causing the rash itself). She continued to refuse to patch test me, and gave me a gel to clear up the staph. I started to search for only natural products to apply to my lips, hoping that the harsh chemicals in other products was causing the rashes. Waxeline, more coconut oil, organic lip balms....

As the rash healed, it would become so dry that I could not move my mouth at all. Desperate for some type of credible medical help, I went to the Rite Aid up the road and asked the pharmacist's advice on what to put on it to soften it while aiding in the healing process. She suggested A&D Ointment. Cue the miracle ointment that I still use today. If I use A&D, my lips are fine. The rash is absent. I am not allergic to what is in A&D, so I stick with it (despite the awful smell). It has to be actual A&D ointment, not knock of brands- those contain a slew of ingredients that could potentially harm the skin and cause a breakout. Lots of chemicals.
My love of A&D was confirmed when my husband and I stayed at a friend's house in late January of this year. I forgot my A&D, but had an Eos with me. At bedtime, I slathered the Eos on. I woke up with huge swollen lips. Never again. I needed my A&D.

The outbreaks slowed, but would occasionally flare up- and still do- for various reasons: my husband puts on chap stick that I'm allergic to and then kisses me, I go too long without applying A&D, etc. We PCSed to Harrisonburg in July, and I got a referral to an actual doctor dermatologist (my derm in Fayetteville was a PA). During my first consultation, she took one look at one of the above photos and confirmed that it is indeed contact dermatitis and that the fever blisters are a side effect of the contact dermatitis. She is patch testing me next month and we will finally get to the bottom of exactly what is causing these lip outbreaks. Hallelujah.

Black Friday 2013, using my lovely scarf trick to hide my lower face

So, what I want you to take away from this:

  • If you're struggling with something similar, go see a good dermatologist and get patch tested ASAP. Stop putting stuff on your lips. Stop eating food that could irritate your lips. Stop washing your face with harsh chemicals. Go to the doctor. 
  • Reduce the amount of chemicals in the things that you use. Go back to basics. Read the labels of the stuff you're putting on your skin. You never know when your skin could randomly decide that it has had enough.
If you found this post because you are going through the same thing, you can email me if you'd like. kptorbett@gmail.com. I will try to help you.


~KPT

**UPDATE 6/5/2015** Patch testing was completed back in March and I am indeed allergic to propolis, a substance in beeswax. I must avoid all products with beeswax (you'd be shocked at how many things contain it). If you suspect a similar allergy, see THIS site for important info, including substances that you may also be allergic to (cross-reactions). There is not a lot of information out there about propolis allergy, so I hope you find this link helpful.


1 comment:

  1. omg thank u thank u thank u for sharing!!! i have been having the same issue, and I also havn't been leaving the house, and if i do i feel so hidious. It feels so good to know, someone else is going through this same thing. I saw another blog post of someone who was allergic to that thing in beeswax too, so i'm pretty sure thats what it is. getting a patch test soon. thanks again times a million for sharing!!!!!!! p.s i know how hard it is to post pics of yourself like this so big ups mama!

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