Treating Ankylosing Spondylitis with Chinese Medicine and Acupuncture (My Story)

People around the world are ‘celebrating’ World Ankylosing Spondylitis Day today in an effort to raise awareness about this horrible and painful autoimmune disease. This is a disorder that affects millions of people and I am one of them. If my story here helps one person, then it has been worth it. There is no need to suffer silently with this disease.

I was diagnosed with an autoimmune disorder called Ankylosing Spondylitis in February 2009 after suffering from a variety of strange symptoms over a span of ten years. I might not look outwardly sick, but inside my body there is a maelstrom being waged each and every day. My body is in a  systemic and chronic cycle of inflammation, and there is no escaping it.

If you’re looking up Ankylosing Spondylitis right now, you’ll read that this is a type of inflammatory spinal arthritis, but AS isn’t the type of arthritis that you get from old age. AS is juvenile arthritis, and it’s a reactive and chronic autoimmune condition that is similar to Rheumatoid Arthritis. An autoimmune disorder, by the way, is a condition that occurs when your immune system mistakenly attacks and destroys healthy body tissue.

The exact causes of autoimmune disorders are not known, but scientists believe that the risk factors include genetics, environmental factors, gender, sex hormones, and infection.

My condition seems to be related to a predisposition for auto immune disorders within my family. My paternal grandmother, my father, my mother, and my brother all suffer from autoimmune illnesses. I’ve read that a family’s susceptibility to autoimmune disorders may be linked to common environmental factors. (The Auto Immune Epidemic). Environmental factors such as constant exposure to heavy metals and the chemicals that we pump into our environment are thought to play a vital role on the development of autoimmune disorders in the past one hundred years. When you stop to think of everything that we are exposed to on a daily basis from genetically modified foods to fresh produce that is coated in pesticides to the chemicals that we spray on our lawns or the chemicals that cling to your dry-cleaned clothes, it’s not hard to see that there is a connection.

All I can tell you is that more and more people are developing auto immune disorders each and every day. This includes diseases like Lupus, Crohn’s disease, and Celiac disease-sprue, to name a few.

More than 33 million people around the world suffer from AS.

In 2009, shortly after I fell ill for no apparent reason, the doctors at National Taiwan University Hospital were able to offer me a diagnosis, and within a year my condition became ‘manageable’. But my life still consists of constant visits to the rheumatologist, regular blood work, and a host of medications to keep the worst of my symptoms at bay.

I still get hit with bouts of inflammation that stick around for months on end. The last really big flare I had was July 2011. My knees and hips started swelling a few hours before I boarded a plane to Hong Kong, and by the time we landed, I had to be brought off the plane in a wheelchair. My husband ended up pushing me around in a wheelchair all weekend. It wasn’t a very nice vacation.

I don’t know if you noticed that I wrote that my doctors have managed to treat my symptoms. There is no cure for AS and all the other autoimmune-related problems that I experience on a daily basis.

My Symptoms and Complications Related to AS

These are just a few of the symptoms that I’ve experienced over the past decade:

  • I’ve had both knees swell up to the size of bowling balls.
  • I’ve woken up and been unable to lift my arm more than a few inches.
  • I’ve experienced excruciating back pain that keeps me bedridden for days.
  • I lost the ability to put any weight on my foot.
  • My hips and thighs develop a sensation that is akin to being stabbed with a sharp stick over and over again.
  • I’ve had strange skin rashes, horrific ear infections, and eye infections.
  • I’ve been suffering from stomach problems off and on for the past year.
  • I suffer from extreme fatigue.
  • I suffer from bouts of extreme depression.
  • I’ve gone through months of debilitating and chronic pain that has left me unable to walk without the aid of a cane or wheelchair.
  • Fibromyalgia
  • Sciatica pain

Sha Lun Beach-0250

I’ve tried everything to try and reduce the chronic and systemic inflammation that I’ve been experiencing. I’ve tried different kinds of medications, I’ve done detoxes and elimination diets. I switched to an anti-inflammatory diet in November, and I still didn’t have any success in alleviating my symptoms. My latest bout of
AS related complications started in early October 2012 and progressed through to early March, and 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. I was going through a vicious cycle of having my ear canals swell and weep with infection and then the skin would dry up and crack. This was happening every six days for six months. It really affected my hearing. This spread to my eyes in January 2013, and that’s when I really started to get worried.

In late January, chronic fatigue set in and I was just miserable. Fatigue is a major complaint among patients with inflammatory rheumatic diseases, and it can be related to things such as loss of sleep from physical discomfort. It can also be a by-product of the disease itself. When inflammation is present in your body, your body uses enormous amounts of energy to deal with it. It took me hours to get going in the morning. My alarm would go off and I’d lie in bed waiting to have enough energy to get out of bed and get a start on my day.

Shortly after Chinese New Year in February 2013, I was ending every single day in tears. It was just exhausting. A good friend of mine, who worked as an acupuncturist and Chinese herbal medicine doctor in the States, suggested that I go to see a famous Chinese medicine doctor in Taipei by the name of Dr Lee Chen Yu.

Dr Lee is famous for successfully treating a number of brain and spine diseases such as stroke and cerebral palsy. He has also been very successful in treating people with chronic autoimmune illnesses. This was not my first time seeking out help from a TCM doctor. I was treated with acupuncture in mainland China for AS complications in 2003, but I didn’t find that the treatments helped. I also had an experience with cupping and scraping in Taipei in 2007. (Click on the links to read about my experiences and view photos from those sessions.)

I have run the gamut in terms of treatment options, and Dr Lee was the only person left that I could turn to for help.

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My Treatment Plan with Dr Lee Chen Yu

My first treatment with Dr Lee began on March 4, 2013. Dr Lee’s office is on the 4th floor of an old building that smells like it has been permanently doused in herbal solutions. The front room houses an old beat-up desk and a long counter with staff busily measuring out different kinds of herbs on old fashioned hand scales. The herbs are then funneled into a special bag that is used to steep the tea. To the right of the front door, there are several narrow cots laid out for acupuncture treatment. 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 describe my problems to an American who has been studying with Dr. Lee for eight years. Doctors come from all over the world to study with Dr. Lee. The man who is helping me is just one of about half a dozen foreign doctors in the clinic. The doctor is very patient with me as a I bring him up to speed on my medical history. He tells me that they had successfully treated other patients with AS, and that gave me pause for thought. I was there to relieve the pain and inflammation that had developed in my eyes and ears, 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.

Then I meet with Dr. Lee. He seems like a kind man, and he’s got a great rumbling laugh that immediately makes me feel comfortable with him. We go over my symptoms with Dr Lee as he looks me over and measures my pulse with his thumbs. He tells me that all of my problems are interconnected and asks me to begin treatment immediately. He tells me will take a long time and asks me if I’m ready to commit.

I say yes, and he begins to outline my treatment. I’m to drink his herbal tea three times a day and then take a round herbal pill once a day. My physical treatment begins immediately with bleeding and acupuncture. Yes, you read that right.

Week One

What follows can only be described as an unpleasant experience. The treatment begins with bleeding. 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 Lee’s treatments aren’t covered under my National Health Insurance plan, I end up paying NT$4800 ($160USD) for my first session and a week’s worth of tea.

Week Two

The following week, I go back to the clinic for more bleeding and acupuncture. 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, but when I sit up after the treatment is finished, I feel completely energized. I was up until 5am that day. I had so much energy that I ended up rearranging the kitchen cupboards until the wee hours of the morning.

I’m starting to suspect that acupuncture might not be a good treatment option for me. I’ve read that people who suffer from auto immune disorders can react in wildly different ways with acupuncture. It seems that I’m one of those people.

Meanwhile, my symptoms are getting much worse. My entire body was in overdrive. The inflammation within my body was being drawn to the surface, and I barely had enough energy to leave the house.

Week Three

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 feeling really emotional and overly 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 forgo that portion of the treatment plan and focus on drinking the tea three times a day.

Let me tell you, the herbal tea that I have to drink is the worst thing I’ve ever had to ingest in my entire life. It’s like drinking dirt. I have a very hard time keeping it down. Even now, six weeks later, I’m still having a hard time keeping it down. It’s a force of will to drink this stuff every day.

The tea makes my stomach extremely upset, and I feel queasy all the time. Certain smells sent me running for the bathroom. I wanted to quit from day one. It was really, really difficult for me to spent NT$4,800 a week on something that was making me so ill. I was just miserable, but the alternative was worse. I kept telling myself that I must be crazy to spend that much money on bleeding, acupuncture and medicine that makes me  violently sick, but I could tell that my symptoms were starting to improve towards the end of Week Three, so I stuck with it.

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.

Week Six

By Week Six, I started to notice a huge 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.

Week Eight

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. Has the NT$40,000 in cash that I’ve spent on my treatment been worth it so far? In some ways, yes. I am noticing an 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 pretty good overall. I’m thankful that I stuck with the treatment that far, but during week nine, my husband and I decided that I should stop seeing Dr. Lee due to the fact that his teas were making me violently ill. My plan all along has been to pursue a plan that is covered by my insurance.

I have 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. I take the medicine in a powder form, and haven’t experienced as much stomach discomfort. My doctor at the hospital speaks perfect English and he’s got the best bedside manner of any doctor I’ve met in Taiwan. 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 and I’m happy with the care I’m receiving although I’m not experiencing the bouts of energy that I had during my treatment with Dr. Lee.

I try to get to the gym regularly, but I’m still trying to learn my boundaries between too much exercise and the right amount. I’ll be able to do an hour of light yoga one day, for example, but power yoga sessions tend to hit me a day later and almost always put me into a cycle of inflammation. Some days I can jog, other days I can’t do more than 20 minutes on the bike. If I’m feeling fatigued in the slightest bit, I don’t go to the gym. And I’ve really started to notice a difference between good pain and bad pain. That’s key to working with this disease.

My rheumatologist believes that this is because my disease is progressing. I’ve recently been diagnosed with fibromyalgia, and he wants to bump me up to the next level of drugs. That  means going off of NSAIDs and going on steroid use – something that I’m really opposed to. Once you move to that level of treatment, there’s no going back, but with the number of symptoms that I’ve developed over the past six months, he feels it’s only a matter of time that this happens. Right now, I feel that I’m staving things off with the Chinese medicine. My ears and eyes have continued to improve, but the pain in my joints and muscle tissue has continued to yo-yo.

Seeing a TCM doctor has had its ups and downs, and while the treatment was harsh to begin with, I am happy with the results. Traditional Chinese medicine might not be an option for everyone, but so far, it has worked for me. The improvement in my ears and eyes alone has been worth it.

AS sufferers around the world will probably agree that relief of any kind from chronic pain and inflammation is a veritable gold mine and it’s meant to be cherished. You never know when life is going to give you a kick in the pants, and I’m determined to live mine to the fullest until the day that this disease rears its ugly head once more.

 

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8 thoughts on “Treating Ankylosing Spondylitis with Chinese Medicine and Acupuncture (My Story)

  1. Milan

    Hi,
    You seem to be one hell of a fighter to fly across the ocean to treat for AS. And how have you been lately? Are you still treating with accupunture and TENS unit?

    Let me introduce myself. I have been diagonised as RA and AS back in 1997 and was treated with N-SAID and steoroids. That time I was advised for TCM by my fellow friends and this practice obviously new in my country (Nepal), I had a go as advised but didn’t went well. May be that could have been at the increasing moments of pain.
    Then, I tried ayurvedeic treatment, homeopathy, shammans; and worshiped deities as that could have or may obstructed the path of recovery. But it all went for nothing. The inflammation would derive pain and it would be no ordinary as you have experienced yourself.
    Now, tired of taking medicine and abusing body with its side effects, I have decided to give it a go for TCM and your article really inspired me. Like yours, my treatment is arranged and corroleted wtih panchakarma(part of yoga) along with ayurvedic herbal medicines, and the first three weeks were progressive and pain and inflammation were reduced to nearly one -third.
    But, as the physios were introduced, in fourth week, my pain and inflammation level rose (not back to square) but enough to restrict my mobility. Currently, I am in six week, after stopping physios throughout week five, my pain is as in week three.
    The therapist are urging me to start doing physios to manageble state but I am in dual mind as I will have to bear the pain and if not when and how will I get better as to have my mobility. I know, I won;t be as good as I used too, but moderate mobility for walking without cruches and support is all I expect.
    My TCM doctor has suggested as by yours saying it will take prolong treatment.and it has been five weeks already. I wonder how many more weeks may it take? As you have been advised for steroids, what are your drugs taking prescribtion? or have you dropped all of them after your TCM regime? Please, adivise me If you could.
    Thanking you
    Milan

    Reply
    • Carrie Post author

      Hi Milan,

      I’ve stopped doing my acupuncture sessions and I’m using traditional Chinese medicine and yoga along with my Western medicine prescription. I’ve been taking Chinese medicine since March 2013 and I’m still on Sulfasalazine twice daily. I really don’t want to move to the next class of drugs unless absolutely necessary. It’s a real roller coaster, isn’t it? I hope you’ve been able to find some relief.

      Reply
  2. Lisa

    Carrie I had no idea you were dealing with an autoimmune disease! For the past year I’ve had misdiagnoses that led to what one doctor here believed was autoimmune and incurable. It’s been chronic pain and inflammation HELL. This “mystery illness” is the main reason I didn’t travel over my winter break (*heartbreaking*). I was actually going through a rough bout of it while I was in Taipei but I pushed through anyway. It wasn’t the greatest holiday. Anyway, it turns out my doctor had it all wrong and I’m dealing with something that’s definitely curable. However, since I went almost an entire year treating the wrong thing, it’s going to take time. I never thought I’d be dealing with a chronic pain condition at 28/29 years old. It’s horrible when you look healthy on the outside but are really suffering. (Also, I’ve been doing acupuncture weekly and it helps. LOVE that it’s so cheap here!!)

    Reply
    • Carrie Kellenberger Post author

      Sorry for the late reply, Lisa. I was diagnosed in 2009, and it has been a constant battle for good health ever since. I was suffering through a flare while you were here as well. You can tell by my puffy face and my lack of energy. I’m usually MUCH more energetic than the night I met you!

      Chronic pain sucks. I’ve tried everything from cupping and acupuncture to Chinese medicine, reiki, massage, and good old-fashioned painkillers. Nothing really ever takes the edge off it though. I also suffer from Fibromyalgia, and other auto-immune related illnesses.

      It sounds like you’ve got a proper diagnosis and you’re dealing with things properly now. It took over a decade for me to get a proper diagnosis, and to this day, I still get looks from people who think I’m trying to cop out of something.

      Reply
    • Carrie Kellenberger Post author

      Sorry, Lisa. I didn’t realize I missed replying to your comment. If you’re going through this, I really feel for you. No one really understands what it’s like to suffer from chronic pain and inflammation unless they’ve actually been through it. One of the things I struggle with constantly when I’m flaring is convincing people that I’m really sick. For example, last summer I flared for 63 days. One of the last big events I attended last summer was the Cirque du Soleil show, and up until then, no one had really seen me in a full flare. They were shocked to see me looking so ill, but two weeks later, one of my friends couldn’t understand why I wasn’t over it. I felt really pressured to go out and do something with them, but I simply didn’t have the energy or strength to do it, and then I had to go through explaining all of it all over again. It sucks. I’m glad that you were able to get to the bottom of things, and it sounds like you’re on the path to recovery!

      Reply
  3. Shantelle

    My husband was diagnosed with AS after 3years of pain. Chiropractic, massage, NSAIDs, acupuncture, exercise, and even narcotic pain killers gave him temporary relief. This week I learned about another therapy. Honey bee venom. Seems crazy but sting yourself with honey bees. Their venom has different properties than other bees. A friend of mine met an 80 year old man who was diagnosed with early onset RA and became wheelchair bound. Honey bees set him free and my friend knew him as an avid, active gardener and beekeeper who stung himself once a day. We have only just begun with my husband, but last night I had to almost carry him up our stairs and today his left SI joint was pain free after working through his morning stiffness. It is worth looking into. I wish you the best of luck!

    Reply
  4. Vivek Nigam

    Hi Guys,

    I am also suffering from AS. 3 years ago this disease was highly active in my body. I was completely on bed for almost 3 months. I got inflammation in my knees, shoulders, neck joint and hip joints. I was not able to sit even. I tried almost every therapy and all pathy’s. Nothing was working to me. Then i came to know about a herb and a vaidya who use to prepare medicine in powder form. I started taking that twice a day for 15 days. That too was not working , so i decided to stop that too. but after 2-3 days of stopping it i felt life was pretty good when i was taking that medicine. I started that again and in around 1-2 months i was in my office doing the same pathetic work again. My life started rolling again. I am continuing that medicine now also but once a day and 5 days a week. I am able to do all of my tough jobs, playing with my kids and bearing my wife.

    Vivek

    Reply

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