Today is World Autoimmune Arthritis Day, so I’m writing about treating Ankylosing Spondylitis with Chinese Medicine and acupuncture. I thought I’d write a little about the alternative treatments for chronic illness that I’ve been using over the past few months.
This post was written in May 2013. I’ve given up on alternative treatments, but I hope my post is informative for readers.
I live in Taiwan. Naturally, any time someone learns that I have severe arthritis, they automatically suggest acupuncture and Traditional Chinese Medicine (TCM). I can’t tell you how many times someone has said I SIMPLY MUST TRY their famous TCM doctor. It seems like every TCM doctor here is famous, by the way.
My Story with Treating Ankylosing Spondylitis with Chinese Medicine and Acupuncture
I was diagnosed with Ankylosing Spondylitis in Taipei in February 2009 after suffering from a variety of strange symptoms over a span of ten years.
I might not look sick, but there is a maelstrom being waged in my body every day. My body is in a perpetual state of chronic inflammation.
Ankylosing Spondylitis is a horrible and painful disease. I’ve tried everything to reduce the chronic inflammation that I’ve experienced since my diagnosis. I’ve tried over a dozen kinds of medications, I’ve done detoxes and elimination diets, including an anti-inflammatory diet in November 2013 that did not alleviate my symptoms.
Having tried all this, I have very little patience for people who suggest that food is a cure for chronic illness.Food is not a cure for chronic illness, although there is no disease in the world that can't be made a little bit better with eating a clean, balanced, and healthy diet. Click To Tweet
One bout of AS related complications started in early October 2012 and progressed through to March 2013. Despite my best efforts to bring things under control, my symptoms continued to worsen through November and December 2012.
My ears, in particular, have given me an enormous amount of trouble since I was a child. I experienced non stop cycles of my ear canals swelling and weeping with infection. Then the skin would dry up and crack. It affected my hearing and I am partially deaf in my left ear because of infections. In January 2013, I experienced my first bout of AS-related uveitis.
By late January, chronic fatigue set in and I was miserable. Fatigue is a major complaint among patients with rheumatic diseases. It’s related to many things such as loss of sleep or stress, but it’s also a symptom of the disease itself. When inflammation is present in your body, your body uses enormous amounts of energy to deal with it.
In February 2013, I was in bad shape.
At that point, someone who saw me struggling every day suggested I see a Chinese herbal medicine doctor. Having worked for this doctor, he suggested I see a famous Chinese medicine doctor in Taipei.
At the time, Dr. Yu was famous for successfully treating a number of brain and spine diseases. He also had success stories of patients with autoimmune illnesses improving under his care.
This was not my first time seeking help from a TCM doctor. I was treated with acupuncture in mainland China for AS complications in 2003, but the treatments did not help. I also tried cupping and scraping in Taipei in 2007.
My Treatment Plan with Dr Yu
My first treatment with Dr Yu began on March 4, 2013. The clinic was on the 4th floor of a building that smelled like it had been doused in herbal solutions. Upon entering, patients are greeted at an old beat-up desk. Staff are busily measuring out different kinds of herbs on old fashioned hand scales a long counter against the wall. The herbs are funneled into a special bag that is used to steep the tea. Stepping into the office, there are several narrow cots for acupuncture to the right.
The smell of burning incense is strong, but it does nothing to detract from the overwhelmingly musty smell of steeped herbs. It’s a pungent smell that immediately sets my stomach off in spasms of queasiness.
I was greeted by an American herbalist who has been studying with this doctor for eight years. He’s just one of half a dozen foreign doctors in the clinic. As I bring him up to speed on my medical history, he tells me that they had successfully treated other patients with AS.
This gave me pause for thought. I was there to relieve the pain and inflammation that had developed in my joints, ears, and eyes and this man was telling me that they could not only help with my eyes and ears, but they could also get me off my AS medication completely. I was stupid and stopped taking my AS medication.
Finally I meet Dr. Yu. We go over my symptoms as Dr. Yu measures my pulse in both wrists with his thumbs. He tells me that all of my problems are connected. Treatment must begin immediately. It’s going to take a long time. Am I ready to commit?
As he begins outlining my treatment, I learn that I need to drink his herbal tea three times a day and take a round herbal pill once a day.
What follows can only be described as an unpleasant experience.
The treatment begins with bloodletting. Yes, you read that right.
He starts by pricking the skin in front of my swollen ears twice with a pin. He then places a suction over the pricked area and draws the blood to the surface. Then he does this again at the top of my spine, on the inside of both wrists, and on the back of my knees. This, they say, helps to open up the meridian lines and draw out inflammation.
Next, the acupuncture treatment begins. Two needles are placed in the back of my head under my cranium, two in the tender part of skin between my thumb and forefinger, and two behind my knees. I experience immediate throbbing and discomfort, but only on the left side of my body. He leaves me there for 20 minutes.
When the needles are taken out, the doctor pushes hard on those spots and then asks me to sit up slowly. I am immediately lightheaded. It felt like the room was moving away from me. Then I felt overwhelmingly tired and I wanted to cry. He asked me to sit for a few minutes and try to relax.
I leave while they are brewing my medicine and they tell me it will be delivered that evening. Since Dr Yu’s treatments aren’t covered under health insurance, I end up paying NT$4,800 ($160USD) for my first session and a week’s worth of disgusting herbal tea.
The following week, I go back to the clinic for another acupuncture treatment. This time, I feel like I am going to throw up. The smell of incense keeps my stomach rolling for the duration of my visit. (It turns out that I’m allergic to incense. One of 200+ allergies.)
When I sit up after the treatment is finished, I feel energized. I was up until 5am that day. I had so much energy that I ended up rearranging the kitchen cupboards in the wee hours of the morning.
I’m starting to suspect that acupuncture might not be a good treatment for me. I’ve read that people who suffer from autoimmune disorders can react in different ways with acupuncture. It seems I’m one of those people.
Meanwhile, my symptoms are getting worse. My entire body was in overdrive. After that initial burst of energy, I barely had energy to leave my house the rest of the week.
Perhaps this is not working.
My third week of treatment came and went with similar results. This time, the acupuncture treatment was extremely uncomfortable. When I got home, I was emotional and fatigued. I got home at 5pm and slept through until 9am the next day.
After discussing things with my husband, we decided that I was just too sensitive to acupuncture, and I decided to stop that portion of the treatment plan and focus on the tea three times a day.
Let me tell you, the herbal tea was the worst thing I’ve ever had to ingest in my entire life.
It’s like drinking dirt. I had a very hard time keeping it down. Six weeks later, I was still having a hard time keeping it down. The tea makes my stomach extremely upset, and I feel queasy all the time. Certain smells sent me running for the bathroom. It was difficult for me to spend NT$4,800 a week on something that was making me so ill.
I kept telling myself that I must be crazy to spend that much money on bloodletting, acupuncture, and medicine that makes me violently sick, but the doctor kept urging me to stick with it. It turns out I shouldn’t have been drinking that damn tea! I got an IBS diagnosis later that year.
By the end of March, I had spent NT$24,000 ($800USD) on medicine and doctor visits in the month of March. NT$20,000 went to the clinic, the rest of it went to my regular doctor appointments.
I started to notice an improvement in my energy levels. The inflammation was down everywhere in my body, my ears were almost back to normal, and I was able to go back to the gym. I was still having massive problems with my stomach that started with drinking the tea. Was it worth it to continue?
My ears haven’t been this clear in over two years, and the skin rashes and eye infections are starting to slow down as well. Had time and rest helped me heal or is it the tea and treatments?
Has the NT$40,000 in cash that I’ve spent on my treatment been worth it so far? I’m not sure. There is improvement in my eyes and ears, and I’ve had more energy, but the problems I’ve had with my stomach haven’t been worth it.
Now it’s May and we’re here at World AS Day, and I have to say that I’m feeling ok, but I’ve also been resting hard for over eight months. During week nine, my husband and I decided that I should stop seeing the doctor due to the fact that his teas were making me violently ill. My husband thought I was nuts to spend that much money, brew tea, and then vomit it all up for hours afterwards.
This is when I decided to move to a clinic that is covered by my insurance.
I started seeing a doctor at the Taipei Chinese Medicine Hospital in Ximending. My visits and medicine are covered under Taiwan’s National Health care system. I pay NT$140 per visit and I’ve been seeing him since May.
This ‘tea’ comes in a powder package and I haven’t experienced as much stomach discomfort.
My new doctor at the hospital speaks perfect English and he’s got the best bedside manner of any doctor I’ve met in Taiwan. (I still believe this to this day and it’s now 2021.)
He is also the only doctor to date that has actually touched my back during a flare to assess where the pain is located. I’ve been seeing him since May 2013 and I’m happy with the care I’m receiving.
One major mistake that I made is that I never told my rheumatologist that I was doing TCM treatments. I stopped taking the anti inflammatory medications that he prescribed in order to let the TCM work. That was a HUGE mistake because it allowed my AS to progress.
When I finally let it slip, my rheumy asked me sharply if I’d kept up with the Western meds he’d been prescribing. When I admitted I had not, he said that untreated, my AS had progressed.
In 2014, I started experiencing a different sort of pain and that is when I received my fibromyalgia diagnosis. We never talked about why that happened, but I suspect stopping my Western medications, pushing through with work, and doing too much weight bearing exercise caused damage. I was also under a lot of stress being a new business owner and trying to keep my business going. Hello, fibro!
Seeing a TCM doctor has had its ups and downs. I liked the bursts of energy I got, but the energy was almost manic and there was no explanation for it other than ‘this is how you react to acupuncture’. The herbal tea in liquid form was a bad option for me. The powder mix was better, but I NEVER SHOULD’VE GONE OFF MY WESTERN MEDS!
However, TCM did seem to help my ears immensely. I’ve never had a problem since then and that’s great, because I experienced decades of chronic ear infections prior to TCM treatment. I’m very glad I don’t have to deal with that anymore, but I wish I had known better and had thought to tell my rheumy what I was doing.
This is my veteran patient tip to you for this post: Make sure you tell your primary physician or specialist everything you’re doing. If you’re taking TCM, supplements, or doing a special diet, your doctor MUST know about it.
I was simply too new to AS ten years ago and too naive to know better. I regret that I didn’t say something because the end result is that I allowed myself to go untreated for AS and that resulted in my disease activity getting worse.
AS sufferers around the world will agree that relief of any kind from chronic pain and inflammation is a veritable gold mine; it’s meant to be cherished.
You never know when life is going to give you a kick in the pants, so it’s important to try new things. Just be smart about how you do it and make sure your doctor is always informed.
Finally, I’d like to mention that I know plenty of patients who have had great success with TCM. Everyone reacts in different ways, so again, it’s important to try new things, as long as you’re trying them and being smart about it.