This one is gonna be a bear to write. Unlike IBS, which occasionally put me on the sidelines of life, CIU felt more like I was trapped in a cage, and the cage was my own body. It was a dark, isolating 18 month period, from summer 2016 through the end of 2017.
CIU stands for chronic, idiopathic urticaria. This translates to.. “you have persistent hives, we don’t know why.. and we will kinda insult you with the diagnosis”.
id·i·o·path·ic
/ˌidēəˈpaTHik/
adjectiveMEDICINE
relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown.
It started with a few tiny pills. Bactrim, to be specific. Sulfa antibiotics, some of the oldest, longest-used and strongest antibiotics there are. They were prescribed by a virtual doc, one of those emergency clinics some health insurance packages provide, where you can call off hours to avoid having to get in-person care. I needed them for a UTI, which I had been getting on and off over the past few years, in what I came to find later was a fairly common issue for women in their mid-40s. I was already aware of natural options like D-mannose and concentrated cranberry pills, but sometimes those were not strong enough.
The doc might have told me to avoid alcohol, and I did not (we were hosting a 4th of July party).. and there was also an unusually stressful period at my corporate job, which was pretty intense around that time. All of that came together and within a few days of taking the pills, I was frantically itchy. But by then we were traveling for one of my daughters softball tournaments, and there wasn’t much time to tend to myself. When I finally did, I was horrified to see that my stomach and back were covered in a leopard-like pattern of slightly larger than quarter-sized half circles and dots. I did not look human! I was concerned, itchy, swollen, tired and irritable. Fortunately I got some medical support pretty quickly, and the Rx was oral steroids. Not a desirable medication to be on long-term, but an effective short-term remedy to force my body to stop the inflammation. At some point around this time, on top of my anxiety about my new-found animal-print body, it was suggested that I might have Steven Johnson syndrome, which can be fatal. As you can imagine, this did not help. But.. it was ruled out, to my relief, and I was back where I started.. just overtaken by unexplained hives.
At my dermatologist, after a few rounds of steroids and the hives coming back after each one, a doc decided to take a sample of skin from my arm. They gave me a shot to numb the area, then used what looked like a doll-house replica of a metal ice cream scoop (sooo tiny and cute!) to take some of my flesh as a sample. When the sample came back, it did not give any definitive insights. So.. I was without a small piece of my arm, but no further ahead in terms of a cause or a treatment. At some point in this phase, my derm suggested I try a scabies treatment, I think out of desperation and a bias to do something. Except he didn’t suggest it to my face.. I called to fill a prescription after my appointment and on the phone with CVS, the pharmacist explained that I had been prescribed a medicine for scabies. I immediately called my derm’s office to ask why, and he sheepishly apologized. It was around this time the office informed me that because the hives had not resolved within the past six weeks, they were willing to refer me to the local dermatology expert, and a week or so later, I made the cut to get an appointment with him.
The king of dermatologists was pretty collaborative, in the beginning. Because of my history (and some things I had read), I wanted to check for parasites. We also checked for auto-immune conditions, thyroid issues and a few other things. Once again, I was met with “good news”. All of those potential causes were ruled out. The problem was simply that my body was “hiving for no reason”, “like a runaway car whose breaks have failed, going downhill”. I was diagnosed with CIU, told that there was “less than a 1% chance” of figuring out the cause, and encouraged to watch a video that featured middle aged women with CIU, having a conversation about how they need to move beyond trying to figure out the cause, to regain their peace of mind.
Can you imagine the parallel in the corporate world? I did. My boss tells me to figure out a problem.. and I come back to tell him that I can’t, I give up, and tell him that fixing it is a bad idea anyway.
Working with the dermatology king, I was taking large doses of multiple types of anti-histamines, as well as an anti-depressant, doxepin, which I was told had anti-inflammatory benefits. Similar to my mom’s experience with Xanax, I was told to increase the dose up to 70mg (or whatever the unit was). At around 40mg, I understood why people with mental health issues often refuse their medication. I remember thinking that the pilot light in the back of my brain that was “me” was getting fainter and fainter. I was floating around like a Pacman ghost, not really in touch with the ground. I felt that if I increased the dosage further, I would be on full auto-pilot. A human, but not me.. some sort of zombie shell of myself. I made my own decision (against my doc) to stop taking the doxepin, ramping the dose down instead of up.
Around this time I was presented with another option which, because I was “in” with king dermatologist, they could help me get access to with full insurance coverage. Which was a big plus, because it would otherwise run me about $1,000 per shot. It might not work, at first, or ever - but we could give it a try. King derm assured me that it did work for lots of women like me. I promised to think about it.
When I did my research, I found that the side effects he briefly mentioned were pretty scary: cancer, stroke, if memory serves, heart attack may have been on the list too. The way the shot worked was to “turn off” your immune system, which is why it carried a cancer risk. What if my immune system were not malfunctioning, and was actually on at full force for a reason? It did not feel like the right choice for me, and I declined. Shortly thereafter, I stopped seeing the derm king, who was visibly irritated at what a difficult patient I was proving to be.
After that, I got better in phases, through a seemingly coincidental series of events. The first step was when I was chatting in the front yard with my mom-friend neighbor, and she encouraged me to go see a naturopath she had worked with. The first thing I learned at the naturopath was that, even though I had been told by mainstream medicine that steroids were “the only option”, there is a natural alternative to steroids that is strong enough that even MS medicine recognizes it - warning that you cannot take it before major surgeries. Cocurcumin, which is a form of turmeric. I took it in bright orange powder form, it had some black pepper and coconut oils mixed in to help with absorption. It allowed me to reduce my oral steroid dosage, something I had struggled with for months, attempting to taper down but each time having extreme flare-ups. Working with my local naturopath, I was able to reduce my dosage from 10mg to 5.
In the Spring of 2017, I came across a book at my local bookstore called “A Beautiful Spiral: A True Story of a Healer's Journey”. It was a gut-wrenching, poignant story of hardship and healing, written by a woman my same vintage, who had also spent time in Africa (and picked up a life-threatening illness there) and who was living in the area, working as a chiropractor. I went to see her.. she did some work on my spine and gave me an earth-shattering insight, which was really more of a reminder. She told me that skin issues are ultimately gut issues - which I knew from reading the book “Gut” (somewhere along my journey with digestive issues).
I decided to go back to my acupuncture doc, who had helped me in 2004. Fortunately I was able to find his private practice and he was still in the area. When we met, he suggested we do stool testing once again, so I got to relish another stealth delivery at the post office. When my results came back, they showed a foreign bacteria commonly found in “African monkey stool”. It seemed pretty clear at that point that the antibiotics had thrown my microbiome off balance, and whatever “bad guy” bacteria had been lingering there had come back to power, wreaking havoc and decorating my stomach along the way. Once again I did a course of diet modification and herbal anti-parasite meds, which required me to eliminate both caffeine and alcohol for several months. I stuck to it, and by late summer of 17, I was at 1-2 mg of steroids, but still having flare-ups, especially if I ate even the smallest amount of sugar.
My acupuncturist shared an office with a natural allergy clinic, and I decided to give them a try - despite being skeptical of their approach. Which was to determine what a person is most allergic to by exposing them to the frequency of that substance (my first research was to fact check this part, indeed all things do have a corresponding frequency.. who knew?) and then see if they can maintain resistance against the practitioner’s arm. When that failed, it indicated an allergy or sensitivity, which could be modified by using a chiropractic tool along the spine - while exposed to the frequency - essentially scrambling the signals coming from the brain through the nerves to the various organs, training them not to react to that substance. I suppose the logic made as much sense as anything else.. so I went ahead with a few treatments. It took a few sessions until I was able to eat sugar without reacting.
The allergy clinic also shared another unexpected alternative: isoquercetin. Quercetin is naturally derived from apple peels and onions, then concentrated in pill form. Anti-histamines work by blocking the body’s mast cells from absorbing histamines, which can become elevated in situations like allergies. Quercetin chemically binds with the histamines and flushes them out of the body. It does not make you drowsy, just slightly dehydrated at high doses - which can be addressed by drinking extra water. Working with the allergist, I was able to get off all the various anti-histamines, without falling back into hive flares.
By the end of 2017, a full year and a half after taking a few Bactrim pills, I was healthy and medication free.
Lessons learned.. mainstream medicine:
-can miss opportunities to connect the dots, eg recurring UTIs and potential age-related hormone imbalances
-may raise the possibility of an even worse illness than you know you have, and then celebrate the rule-out of that diagnosis, leaving you still diagnoses-free
-lacks respect for the intelligence of the human body (“hiving for no reason”)
-may discourage critical thought, and patients from making their own health decisions
-should not be taken seriously when they say something is “the only option”, it is just the only option that they know
-is willing to recommend medications and treatments with potentially devastating side effects
-may miss connections between different body systems, because of specialization (eg dermatology is separate from gastroenterology)
It’s been a big day in writing land. I think I have one more post for this series.. will get to it soon.