Monday, April 14, 2008

Adventures in Integrative Medicine: My Rash

Shortly before my sister Akemi visited from Japan, which would put it sometime in the first half of February, I noticed a mildly irritated spot of skin on my face not far from the left corner of my mouth. My friend Annie had invited us to spend the day with her at her club, and I was very happy for the chance to swim and use the sauna. It was the heat of the sauna that irritated the spot and made me notice it. I didn't think much of it because it didn't itch or hurt, and because I figured it would go away on its own.

Some weeks later, my sister came and went, and I noticed the irritated area had spread to the border of my lip. Having nothing else in my medical history to compare it to, I thought I must be in the early phases of an oral herpes outbreak. I called my doctor and convinced her to prescribe me some Acyclovir to knock out the virus. She ordered a five-day course along with regular swishing with Stanford Mouthwash (a combination of cortisone, an antifungal, tetracycline, sugar, water, and artificial red color). I followed her directions dutifully, and the rash did not get worse but it also did not go away.

A few days later I noticed that the rash had spread to the other corner of my mouth, and was making inroads into my upper and lower left lip. It also began to itch. So I went to the doctor, and she confidently announced that I suffered from cheilitis (which, it turns out, just means "cracked lips"), that it was caused by a yeast, and that the cure was Nystatin. I was relieved that we now knew what the problem was, and a little ashamed that I had not gone to see her sooner. I picked up the Nystatin mouthwash at the pharmacy, and rinsed my mouth several times daily, and applied some to the affected skin around my mouth, as she instructed.

So I was very unhappy when, after several more days, my skin problem was not only not gone, it was worse! The Nystatin made the skin angry and red, and my doctor instructed me to discontinue it. I tried all kinds of topical treatments from aloe gel to shea butter to cortisone cream, but they all made things worse. Even Kazi Dama's Magic Balm didn't help. I was getting quite self-conscious around my patients, since, as a health care provider, having weird sores around the mouth was kind of yucky and didn't advertise my skills as a healthy person much less as a healer. Besides, I had to leave in a few days for an NIH conference in Texas, and I did not want to be dealing with this then.

So, unable to get an appointment in time with the dermatologist, I went in to urgent care. The doctor there, perhaps sensing my frustration with my regular doctor, defended his colleague, saying that cheilitis is most often due to a yeast. It was a good guess, he said, and since we had now eliminated both virus and fungus as the cause, the perp was most likely a bacteria. So he prescribed me some MRSA-killing Mupirocin antibiotic ointment. The stuff smelled like cheap Mexican beauty product, but I applied it several times daily as instructed. Unfortunately, it also made my rash worse. The inflammation pretty much circled my entire mouth, turned red and itchy, then over the course of a day or two dried up and calmed down, then the dry skin flaked off. I was initially excited and encouraged by the flaking off part of this life cycle, thinking that it signified a movement towards resolution and cure, but quickly discovered that the rash was only taunting me; that it would cycle through these phases regardless of what I did.

I went to Texas feeling like the Elephant Man and continued my antibiotic ointment regimen even though it was clearly not working. Finally, in a hyperpruritic frenzy at two or three in the morning on the second night of my trip, I decided to take matters into my own hands. I doused my mouth with hydrogen peroxide. My rash hissed and foamed rabidly and I thrilled in the piercing sting and eventual numbness that settled around my beleaguered piehole. The next day the skin around my lips was crusty and dry, but at least it didn't itch and it didn't seem to be entering into the angry red phase of its life cycle.

By the time I returned to Santa Cruz the rash was swollen, red, itchy, and uncomfortable so I purchased some calendula gel and applied it liberally. I was glad to find that it was the one thing so far that didn't seem to irritate the rash. But it didn't get rid of it either. So, being the resourceful type, I ground up some berberine (from the Chinese patent medicine Huang Lian Su Pian) and mixed up a batch of alkaloid-enhanced calendula gel. If there's a microbe there, I reasoned, the berberine might kill it. For my efforts all I got was a ridiculous-looking yellow ring around my mouth and taunts (and some sympathy) from my family.

I started to get scared. What if this rash was some bizarre autoimmune condition, like pemphigus? Can you get pemphigus from cats? (Charlie scratches himself a lot despite the flea and tick medication we give him). What if it was early stage squamous cell carcinoma? I called the dermatology clinic to see if I could get in right away. The earliest appointment they could give me was over a week away. What should I do? I decided I would wage all-out CAM war on the rash. I would cure it by myself before my dermatology appointment! I started taking Huang Lian Shang Qing Wan ("Coptis Clear Heat from the Upper Body Pills") internally and continued the calendula gel (minus berberine) topically. At my friend Gerhardt's insistence I applied some Swiss medicine called NEGATOL (an antiseptic/hemostatic whose chemical name is policresulen). He claimed that if there was something there to kill, NEGATOL would kill it. I figured, with that ringing endorsment and such a promising name, why not? Like the peroxide, it hurt like hell and dessicated the skin around my mouth. I returned to the calendula gel to try to soothe the dry painful skin.

Rather late in the game, I turned to acupuncture. I bled Stomach-40, the connecting-luo point of the stomach channel, since the stomach channel goes to the corners of the mouth and even around it to connect to the Du and Ren Vessels. I got bleeding-happy and also bled Spleen-1 and Liver-1 around the big toe, since visual examination revealed that there was some blood stasis there (my teacher Anryu Iwashina aka Dr. Bear says that before you do anything else you bleed where there's stasis). This got me thinking that my rash might be more a problem of blood stagnation than of heat, dampness, and toxin, so I made a salve of St. Johnswort/gotu kola and Yunnan Baiyao powder and applied it as an experiment this morning. It didn't inflame the skin, but it didn't seem to help much either, so eventually I switched back to calendula gel. I did more acupuncture, to sedate the stomach channel and tonify the spleen, to aim at the dysfunctional channel via its "opposite" partner the pericardium, etc. etc.

The rash settled into a status quo of not itchy and inflamed, but nevertheless chapped and discolored at the edges of the lips. Continuing on the hypothesis that the problem was one of blood stagnation, I began a course of self-treatment three times daily with a cold laser, at 680 nm wavelength. Lasers are used instead of needles by some acupuncturists, and they seem to stimulate unhealthy cells to perk up and regain homeostasis. RISE AND SHINE MOTHERFUCKERS! became my mantra as I blasted my lips with the dazzling red light.

Slowly, the rash subsided. I don't know if this was due to the acupuncture, the herbs, the calendula gel, the NEGATOL, or the red laser. Or if the disease was nearing the end of its natural course. By the time of my appointment with the dermatologist all I had was a faint discoloration of the skin around my lips. I was tempted to blow off the appointment, but, hyperaware of the potential criticism that I hadn't given western medicine a fair shake, I went. Predictably, the dermatologist spent about five minutes with me and prescribed a corticosteroid ointment. "Shouldn't you take a biopsy or a culture?" I asked, visions of pemphigus-unglued skin flapping in my brain. "You read too much," he laughed, and sent me on my way.

I applied the ointment, and at first my skin reacted by getting itchy and slightly inflamed. Here we go again, I thought, overcome with a familiar frustration. But I persisted, and the skin calmed down, and now a week later at about Week 70 of my odyssey I am finally about back to normal (although after a one-day experiment of no cortisone yesterday the rash came back this morning).

What conclusions can we draw from my ordeal?

1) My doctor should have taken a culture at my first visit, to determine what microbe, if any, was involved in my cheilitis.

2) I should have begun the "complementary and alternative" assessment and treatment earlier.

3) Cortisone is a wonder drug.

4) The integrative medicine approach needs to be flexible and open-ended, rather than codified and inflexible.

To expand a little bit on Item 4 above, I'd like to discuss what I see as the conundrum of integrative medicine. Western medicine and most traditional non-western medical systems are unlike each other in many ways, but most fundamentally they are different because western medicine subscribes to the notion of a "standard of care" which follows disease categories and specific diagnoses, whereas non-western medical systems famously "treat the whole person." What does this mean? This phrase "treating the whole person" is so vague as to be meaningless, and in integrative medicine has often come to mean that the patient applies a variety of approaches to their care, often including methods to address the mind (biofeedback, relaxation and visualization, for instance), the body (drugs, massage, herbs), and the spirit (prayer, meditation). In my opinion, the treasure of non-western systems such as traditional Chinese medicine and Ayurveda is not necessarily their ability to treat mind, body and spirit per se, but their ability to treat each patient's constitution or "pattern" and remedy a person's "deficiencies" and "excesses" (to use acupuncture-speak) in a way that is simply outside the paradigm of biomedicine.

To the western doctor, the patient suffers from an active herpes simplex infection (for instance), and the standard of care is to prescibe an antiviral like Acyclovir. A practitioner of traditional Chinese medicine would choose from any of a virtually limitless range of options, depending on his assessment of the patient's condition. Do the lesions present on the stomach channel, or do they manifest on the liver channel or the Conception Vessel? Is the patient primarily yin-deficient, or qi-deficient? Does the deficiency outweigh the current excess manifesting in the outbreak, and will the herb formula prescibed focus more on strengthening the constitution or on quelling the excess fire and dampness? These may be archaic and poetic terms but they are also phenomenological and clinical. In other words, "treating the whole person" is not simply a matter of throwing the patient a variety of practices and nutrients; it is a way of assessing their clinical picture - and treating disease - in a way that is utterly different from western medicine, and is often very effective.

The problem is that the gold standard of integrative medicine when it comes to complementary and alternative therapies is the notion of "evidence-based medicine." Typically, the informed western doctor will only recommend non-western therapies if there is "evidence" (read: scientific studies) that they work. While this makes perfect sense on the surface of things (why recommend something if it hasn't been shown to work?), the multifactorial nature of non-western therapies makes them problematical from the point of view of establishing efficacy. Do separate studies need to be done for the herbal treatment of liver-channel herpes and for stomach-channel herpes? How do you separate out the effects of acupuncture from the effects of herbs? Should practitioners only do one thing at a time? Does scientific evidence have to be established for the treatment of every disease before doctors can recommend a procedure or a style of healing to patients? Should the results of the research prescribe a standard of care for complementary and alternative therapies?

My answer is yes and no. Yes, more research should be done on CAM therapies and the integrative approach. This will only help to legitimize what we do in the medical and scientific communities. But no, this research should not change the heart and soul of what we do into a subcategory of conventional medicine, with standards of care that dictate how we treat. As reactionary as this sounds, I think that we practitioners of non-western therapies should continue to practice as our forebears have been practicing for the last several thousand years. Chinese medicine is an art, in addition to being an empirical multi-faceted clinical science. The Yellow Emperor would roll over in his urn if acupuncturists started practicing out of a book: "for hepatitis B, needle Liver-3." Unfortunately, much of Chinese medicine in the modern age has in fact been reduced to this. My advice to western medical doctors interested in integrative medicine is to seek out the artists, the practitioners who have mastered the non-western therapies on their own terms, who are creative and resourceful and masterful in their approach to treating patients. Collaborate with or employ people whose individual reputations speak for themselves; don't just rely on studies that show that acupuncture (or whatever) is good for treating A, B, or C, and pick an acupuncturist out of the phone book. I am not saying that evidence-based medicine should be tossed out the window. In this age of the Internet there is much that masquerades as integrative medicine that at its core is simply hokum and marketing. Machines that read the resistance at acupuncture points and, hooked up to a computer, miraculously match your "vibration" to the proper homeopathic remedy or electronic frequency spring to mind (beware of any method that uses the word "quantum" in its advertising).

Certainly, physicians should not blindly recommend things with no rational reason for those recommendations. But I would beg a kind of special status for medical systems such as Chinese medicine or Ayurveda. They are backed by a very long history of continuous use that has, on the whole, demonstrated their usefulness in strengthening patients in their ability to heal. My vision for integrative medicine is one of qualified healthcare practitioners from a variety of traditions, working side by side for the good of their patients, each honoring the integrity and value of the others' traditions and experience. In addition to the cumulative and by its nature always incomplete evidence produced by scientific studies, the evidence these practitioners observe in the clinical domain will drive integrative medicine forward into the future.


Halsey said...

That is some weird shit. Well, not really weird, not compared to my weird shit. Glad to see you're thriving (but couldn't see if like me, you're gray in proportion to your most excellent wisdom). Lots to tell you later but don't want our life history published in a blog. Hows everyone?

Kid's are thriving, Jenny and I are working our asses off and life only flies by faster and faster. Give me a call if you like, 7073158889, or drop me a line to let me know how everyone is. My regards to everyone (that would remember me/us!).


P.S. Don't ask me how I came upon your blog--it was a total accident. I was trying to look up a tcm 'protocol' for retinitis pigmentosa, which Jenny appears to have.

d. moll, said...

This is quite a post, I read eagerly on, perhaps too quickly to be sure the rash had, in fact receded. Are you taking any EFA type supplements, cod liver oil, that sort of thing? Of course now it is better, I've found Emu oil quite good for skin inflamation. What an Oddessy!

jessica said...

was researching cheilitis for my husbands lip. wow, what you went through.

npeden said...

Hi again Kaz

I just tried to post a comment and think I got lost in preview before posting.

What I basically said is that as a radical phenomenologist I appreciate your anecdotal evidence about your journey of the rash.

In my life I am passionate regarding "social research." I embraced "qualitative inquiry" because I could not see how human experience could be dissected without some unexpected and often damaging outcomes. Even using rating scales, like Likert that is used in psychology, objectifies experience in ways that can be detrimental. Planetary melt down being one example of the natural sciences being double edged.

I learned a lot from your experience and find this kind of evidence helpful, just as I did my last treatment from you.

Nancy in Monterey

PS if I posted twice could you delete the second? thanks again.