Pemphigus Vulgaris

In the fall of 2015, I started to get blisters in my mouth forming on my gums. My gums became more inflamed and began bleeding more easily. I went to my dentist to find out what was going on. My dentist was quite puzzled, and chalked it up to a viral infection. My mortified response was..”like herpes?”  

I went to see my primary care physician to figure out perhaps what my dentist could not. At this point, the blisters had started forming on different parts of my body. They were fluid-filled blisters and although they weren’t painful except in my mouth, they became this mystery I wanted to solve. I ended up seeing four primary care physicians all of whom could not give me any answers. They tested me for Lupus and therefore based on my negative results ruled out auto immune. One doctor even told me it could be a vitamin C deficiency.

I was starting to feel run down and tired. I also noticed a change in my urine. It smelled and seemed darker in color. My comprehensive blood panel also showed this as my liver enzymes were off too. In fact my ALT, AST, white blood cell count and red blood cell count were all completely off. All the while, the blisters began increasing. I was getting more than one a week. And the ones in my mouth proved to be the most painful, making eating and swallowing challenging as they began forming in my throat.

I was feeling extremely frustrated with doctors due to the lack of a diagnosis. I decided to take my health into my own hands and went on WEBMD. I stumbled upon Pemphigus Vulgaris which is defined as an extremely rare auto immune disorder in which painful fluid-filled blisters form on the skin and all mucous membranes. It has a 5-15% mortality rate is labeled incurable and is explained by the immune system mistakenly attacking a particular protein in the upper layers of the skin.

I was relieved to find out a possible name for what I had, but I had to be sure. So, I scheduled a visit with a dermatologist I had been previously employed by, because the biopsy done to test for Pemphigus Vulgaris had to be done by a dermatologist. Upon seeing this dermatologist, he agreed with me on the diagnosis but did the biopsy to double check. And when he agreed with me on the diagnosis he said “Unfortunately, I think you’re right.” I wasn’t focused on the unfortunate part, but more on what I thought to be the fortunate part, that of finally figuring this out. And so he proceeded to cut the very first blister from my body which happened to be located under my left breast. 

On December 24, 2015, Dr. Chow called me with the results. “I am sorry to tell you this, but it is Pemphigus Vulgaris.”  Upon hearing the results, I wasn’t sure if I should be happy to have a diagnosis I could finally start treating, or worried because of his apology and tone.  Of course in reading about Pemphigus Vulgaris there were lots of awful and horrible things, but I also knew the internet was very good at providing this side of everything, especially when it comes to a situation where pharmaceutical drugs can be incorporated.

Long story short, the PV got worse. There are so many painful instances and stories that I am leaving out, but one day you will read the full story in my book. What you should know is that I tried every avenue; Chinese medicine, Acupuncture, Homeopathy, Ayurvedic medicine, crystal therapy, Holistic medicine, and even sent my picture to John of God in Brazil for healing. Nothing was working, including the first western medicine treatments for PV which included Niacinamide and antibiotics.

In January of 2017, I experienced what they call a “flare” and ended up under the direct medical care of the Professor of Dermatology at UW, Dr. Philip Fleckman. I had blisters form all over my body including in my eyes, ears, nostrils, scalp, mouth, genitalia, belly button, back, stomach, hands, fingernails, legs…pretty much everywhere. And these blisters became huge open painful lesions. My skin became so thin it was ripping open with the slightest movement. I could no longer wear clothing because of this.

I was extremely lucky to have family willing to help take care of me, as I was no longer able to take care of myself, let alone my daughter. I had to quarantine at my parents’ house without visitors due to my high risk of infection. My family served as my nurses daily, by applying vaseline on all the lesions, making me clothing out of non-stick adhesive pads and bandages, and setting up my ice packs, which I slept on for pain.

I underwent many different medical treatments, until I was finally approved for what was an experimental and very expensive drug called Rituxan. It is a cancer drug and used for patients suffering from Lymphoma. I had this intravenously while continuing to take oral and IV steroids.

Aside from the medicine, I was doing other things. I went vegan and not only vegan, I decided to read up on the Medical Medium and do his 28 day cleanse, which I did for 90 days. Of course, my dermatologist made fun of me referring to me as the “hippie patient” and told me that my diet would not change anything. I did disregard this, but I also knew it wasn’t his fault, as it was outside the framework of medicine he was taught

I had read up on books from functional medicine doctors saying auto immune was rooted in viruses and that the body just doesn’t attack itself. So I decided to incorporate supplements as well, to address hidden viruses like EBV.  I knew I had to do more than just heal my physical body, but also heal my mental, emotional, and spiritual body as well. Or my heart, body, soul, and mind.

So I did weekly hypnotherapy and Theta healing over the phone, while taking my doctor-ordered bleach baths, with a colleague to work on all of the toxic thoughts and beliefs I had stored. Not to mention the epigenetic and ancestral healing that needed to take place within me.

And lastly, I surrendered. There was no knowing if I was going to survive Pemphigus Vulgaris, but I had to trust that if I was going to, I was going to, and if I wasn’t, that would suffice too. I had to trust in Divine timing and that what was happening, was happening when it was supposed to. And I arrived at the notion that PV happened FOR me, not to me.

I have been in remission since May of 2019. I was told upon diagnosis that there is no cure for Pemphigus Vulgaris and that you will have it for the rest of your life. This did not resonate with me then, and still doesn’t now. After all, how can someone say this when they do not even truly understand auto immune and when every body is so uniquely different. Ultimately, YOU get to decide if you will have it forever. I made my decision not to.