Great Observation by My Acupuncturist

[DebE13]

I went to my 9th session of acupuncture yesterday and had a great conversation. The treatment lasts 30 minutes and I usually spend 15-20 minutes in conversation so it's refreshing not to be treated like cattle and herded through the process. She is actually interested in my situation and receptive to my own thoughts. I primarily went because of my unbearable eye pain and was excited that I saw results within the first three sessions. I got the flu after that and took some big steps backwards and have plateaued right now which is a bit disappointing but realistically I can't get too bent out of shape about that. I have seen improvements.

She made a few comments yesterday that keep bouncing around in my head. I complained of the almost ridiculous pains that show up randomly, last for an unknown period of time, disappear for a while, and later show up again unannounced- first it was neck and shoulders, then it turned to midback, later traveled back to my sinuses. A majority of my treatments focused on my eye pain and facial/neck area. Today she said that we need to focus on the stomach and digestive issues because the inflammation caused by my digestive issues is the cause of the inflammation in my sinus/eye area so we need to focus on the cause of the inflammation instead of treating the symptoms of it. !!!! If those weren't words of an intelligent (I'd like to insert "doctor" here but she was clear that she is not a medical doctor) I don't know what is! Kind of like you, Tex.... I place more weight on your opinions, and those that contribute to this forum, than any GI I've seen so far.

My biggest hesistation is I know acupunture alone will not be the answer. It is a strain on my budget to have the weekly appointments since it is all out of pocket and I can't afford to do this on the very long term. I am hoping that I will be able to increase the time between visits soon but if my body is not healed enough I question if I am putting the cart before the horse. I've already spent thousands of dollars that were wasted because I tried alternative medicine/supplements BEFORE I changed my diet.

This March will be my 6th year of my CC dx and in my head I figured I'd give myself 20 sessions before I seriously think about my next step. I've started Align, upon her recommendation, but am very aprehensive because I don't want to make things worse for me. Last week the WD became so bad I bumped up my entorcort to 9mg for a day. I know I took a chance with the dosing but it caused such achey guts for me that I couldn't think of extending that dose further. The next day I took 6mg and have been back to 3mg a day since. Prior to that I was doing ok with 3mg every other day. I am back to D & mud and am ok with that for now.

Here's me in a nutshell- GF/DF since December 2011, SF/EF since February 2012, still working on the entocort taper, severe eye issues that did not improve with treatment from an optomotrist- dry eye was the dx, occassional almost normans with D being the norm, strict limited diet primarily of meat, veggies, rice,and some fruits, and enterolab confirmation of the Panel C test that none of those foods should be eliminated from my diet.

Is it just a waiting game for me now to keep the status quo? I can't think of anything more to eliminate or try to help Norman make a come-back in my life. Is it reasonable to say I just haven't had enough time to heal and simply need to keep it up and wait?

[tex]

Hi DebE,

The flu obviously generated some new inflammation that may take some more time to fade away, so for that reason, time may bring improvements. Also, while you've been on the diet for a long time, it took me longer (a year and a half) to see remission, so that's another vote for more time.

Thinking about this, the fact that acupuncture helps, suggests that stress is a factor. So IMO if there is anything more you could do to reduce the stress in your life (or to counteract it with relaxation techniques, etc.), that would almost surely be very beneficial, because I truly believe that chronic stress is the prime mover behind this disease.

Tex

[Leah]

And the fruit. I don't know how much you are eating, but I know for me, fructose is a big contributor to my D. Time is definitely your friend and stress is not. SO frustrating !

Leah

[jgivens]

DebE,
I am so glad that you wrote about your acupuncturist. I too, find my acupuncture appointments sooo beneficial. I come away much more relaxed and feel like my gut has done a lot of healing from the treatments. Because I don't usually have a time constraint, I sometimes fall asleep while there and wake up three hours later. She has actually encouraged me to come in my pajamas if I want or at least bring them with me!!

She is also a Chinese Medicine doctor and is very interested in what my history and course of this disease has been. She believes that I have had it long before I had D. She is probably correct. I took the article about The Boy with Thorns in His Joints in when I went to see her and asked her about the Chinese Medicine listed in the article. She looked aghast and went and brought back a bottle of pills. She said, "I am sure that these pills were not what cured that child---it was getting the junk out of his American diet!"

I think that you are right Tex, when you say the fact that acupuncture is helping is a sign that stress is a factor. I feel sure that stressors like continued diarrhea and eye problems can't help and it must feel like a "catch 22" for you, DebE. I am so sorry. I DO agree with Leah and Tex that it is a matter of time. Currently, I am having so much trouble with pain and constipation that I am trying to find a fruit that will normalize me without "blowing things out" harshly. I keep telling myself that this has been years in the making and it will take awhile to get things to work correctly again.

It is SO strange to have constipation. The last time that happened I was pregnant and it has been 30 years! I thought once the diarrhea was gone that the gut pain would go with it, but NO! Gut pain and cramping have been constant all day today. When I finally DO have a bowel movement, it is horribly painful and there is no relief afterwards. At least I had some relief with diarrhea.

Tomorrow I see the food allergist. I am hoping that I can plead my case for Enterolab to him and I won't have to call my gastroenterologist and tell him that he needs to help me by ordering it. Everything is just one big negotiation/manipulation after another to get what we need! I am so grateful for the acupuncturist who really "gets it."

[Zizzle]

I love my chinese acupuncturist too! I often fight falling asleep, but I sleep during every session, a surreal, deep, extra-relaxing sleep, but I have no trouble waking up and getting to the rest of my day. I'm always amazed that I can fall asleep, when I'm often jittery when I arrive. I think I must credit her for my lack of side-effects on prednisone. I also mentioned the NYTimes article and the 4-marvels powder to her. She said it was probably a standardized mix of herbs. Sure enough, you can buy it of you want!

http://eagleherbs.com/buy/four-marvels- ... o-san-5336

But no, I don't think that was the kid's cure either. In fact, a friend of mine knows the family from the article, and says it has been a slow, long battle for them with lot sof setbacks. As we know, there are no fast, easy fixes for autoimmune disease!

I'm lucky my insurance (Empire BC/BS) has been paying 80% of my acupuncture treatments so far...but I'm sure there will be a limit to their generosity. Or maybe they see my diagnosis code and hope cheap acupunture will prevent me from going on EXPENSIVE IVIG infusions! Frankly, my insurance should give me a rebate for managing my disease so responsibly!

[tex]

Everything is just one big negotiation/manipulation after another to get what we need!

Which, of course, just compounds the stress, to make the inflammation linger longer.

Tex

[wmonique2]

Deb,

I am actually a trained acupuncturist. I went to Oriental Medical college for it but decided not to practice for many reasons...

Anyway, I want to address the cost of treatment but YOU can do something for yourself. I know that those treatments can add up. Acupuncture has a cumulative effect and that is why you have to keep going back. When I had a flare a few months ago, I gave myself treatments everyday.

You can practice ACUPRESSURE on yourself. It's acupuncture without the needles. You can do it, easily, at home.

Buy a book called ACUPRESSURE'S POTENT POINTS, A GUIDE TO SELF-CARE FOR COMMON AILMENT, BY MICHAEL REED GACH

Now, I have studied the book extensively and the points that are recommended ARE THE SAME your acupuncturist uses and you'll get the same results. For finding points, especially the ones related to stomach issues, you can press on them and they would actually hurt like hell. Once you get the book, I can explain how to do it. There are tools to locate points that you can buy on Amazon, but they are not necessary. You can let your fingers do the walking. The most important points for us are all in the front of the body, mostly on the knee, inner leg and around the belly button. All very accessible. If you have a partner to help you, then it's even better.

You can get the book at Amazon. It's cheaper there.

And as Tex said, stress is a major factor in all this.

I wish we all lived closer, I'd be providing free acupuncture!

Love,

Monique

[DebE13]

Tex, stress is a major factor in my life that I'm trying to manage. The best thing for me would be to quit my job but then I'd be stressed because I'd have no money or health insurance. Not sure what the worse of two evils would be. I'm in a very stressful environment and don't see that changing in the near future. I've been trying to simply change how I react to situations which is actually becoming easier as I'm more aware of how I deal with situations- I simply choose not to react. It doesn't always work but at least I'm attempting to control my stress level. The high paced activity of the office along with a never-ending workload and deadlines is a stress I can't get ever get away from. That's the part that concerns me because isn't stress hard on the body whether we're content with it or not?

I'm less active in the winter which noticable effects me. I need to stop using my dislike of cold weather as an excuse but that's easier said than done when I have no energy left after work.

Leah, I am very careful with fruit. It was hard to limit but I find too much causes problems for me too. Some even seem too sweet to me now.

Jane- it is nice to someone that gets it, mostly. She doesn't understand CC completely but is interested in what I have to say. It surprised me when she asked me what I thought caused my MC. I explained my own opinion of genetics, a life-time of poor diet, and NSAIDs. I could tell she was taking my comments into consideration and I was impressed that she didn't feel the need to be one that knows it all without question. It's a whole different philosophy than western medicine which I really like.

On very rare occasions I will get severe cramping and it's unbearable- I don't know how you cope with it on a regular basis. C does have it's own type of cramps that can stop you dead in your tracks. I wish you the best with your allergist. I was fortunate enough to convince my GI to write the RX for service from enterolab which was covered by insurance. He would only do Panel A but it was better than nothing. I ended up doing Panel C later out of pocket and now have a little peace of mind.

Zizzle- I agree with you about the rebate. I've been planning to contact my insurance company and give them a run-down of the thousands of dollars they have wasted on tests and treatments that I knew wouldn't work but had no alternative. $70 a session to an insurance company is nothing compared to ridiculously high office calls from any doctor. They would have saved a ton on me because it would have been my first choice.

Monique- thanks for the information- I'll be looking that up. My husband is such a sweetheart and will spend a whole evening rubbing my feet, my back, my neck, whatever it takes to find relief. I'm very interested in the whole Chinese medicine philosophy so I'll let you know when the book arrives. My experience so far with the needles are that they hit some sensitive spots. It's one of those things where it hurts but feels good. I prefer to have it turned up so I can feel it. There's also calculated frequency acu-therapy that they use instead of needles sometimes. I know the magnetic bed stimulates cellular regeneration but I'm less of a fan with that since I don't really feel anything. I plan to continue for now since I have no other alternative.

[Sheila]

I tried acupuncture for severe back problems that eventually had to be resolved with surgery. I didn't enjoy the acupuncture, it hurt and left me feeling worse. I know it works for many people and can't figure out why I had such a bad experience. The acupuncturist was an elderly Chinese gentlemen who spoke almost no English.

However, I do get relief for very painful TMJ, esophageal spasm, back issues from a very old fashioned chiropractor. I think the principles are similar. He will trace a problem to a distant part of my body or tell me I have a "virus" in my back. Before I was diagnosed with celiac and MC, Doc did a hair analysis and told me I was not absorbing nutrients. How right he was.

Sheila W

[tex]

That's the part that concerns me because isn't stress hard on the body whether we're content with it or not?

I don't think that's necessarily true. Primitive tribes living hunter-gatherer lifestyles have traditionally endured lives that should be very stressful because of weather extremes, the constant threat of starvation, attacks from wild animals, rivalry with other tribes, parasites, insect pests, etc., and yet they have rarely been shown to have had stress-driven health issues. True, the archaeological records show that arthritis was occasionally a problem in some individuals, even in paleo times, so obviously certain individuals were susceptible. But no evidence exists to suggest that the problem was widespread, certainly nothing even approaching the level of stress-related health issues of today. Overall, it seems pretty clear that they accepted such stress as a normal part of life, and so they didn't worry about it. Since they weren't concerned about it, it wasn't a chronic problem.

By contrast, consider the plight of the American Indians after the government forced them to give up their freedom and live on reservations. They lost control of their homelands, and their destiny, and they felt hopeless. And as a result, disease almost wiped them out. True, the introduction of European diseases to which they had no natural resistance was a major part of the problem, but the damage seemed to go far beyond that, and it's very likely that the extremely high level of chronic stress they felt, dealt the coup de grâce to their disease resistance.

Look at the 1918 flu pandemic. Worldwide stress was at a very high level for several years leading up to that point. The U. S. entered World War I in 1917. Where was the highest concentration of fatal cases of the flu? In U.S. military training camps. Where were chronic stress levels at their highest? In military training camps. These were young men, most of them away from home for the first time in their lives, suddenly faced with a totally different lifestyle. And they were well aware of the fact that they were training to enter a war from which they might never return alive. It doesn't get any more stressful than that, and that type of stress is chronic — it never lets up.

Influenza is a mast cell-driven disease, and chronic stress (according to my theory) is the primary cause of inappropriate mast cell degranulation, so stress can only compound the problems, to create a self-perpetuating reaction in some situations.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302317/

Tex

[DebE13]

Sheila, I'm kind of the same way. It does hurt and is uncomfortable but feels good at the same time, for me. It does wipe me out but I'm hoping that will improve. For now it's the lesser of two evils. I enjoy chiropractic treatment too but haven't gone in quite a while. I'm hoping like chiro, the health insurance companies will soon recognize and cover acupuncture. Mine doesn't touch it yet but if some are starting hopefully more will follow.

Thanks Tex, I like that perspective. I can't remember where I heard that before, on tv or something (and we know everything on tv is true ) but how you explained it makes sense. It's hopeful that making a conscious effort to control reactions to stress will indeed benefit one's health. I'm finding in most situations it's a learned behavior. I started noticing that allowing anger and frustration over situations I have no control is something I can manage, to a point. I always debate if I'm handing my stress or supressing it. I'm in a government office that is basically complaint central. I'd say 85% of the people that walk in have something negative to say. Couple that with "politics" in the workplace and it's a wonder I smile at all. I've become much better with stepping back from a situation and treating it as my job to handle instead of taking all the negativity personally. Baby steps.

[wmonique2]

Hi Deb,

I am not too sure what all your symptoms are but for me at least it took more than one med to treat them and to bring about health. I was on mesalamine (lialda) and still am, for the flast 20 months. I took entecort as well off and on but stayed on lialda. Then I added Elavil which is an anti-depressant that works well (in small doses, 10mg) for GI issues. It took care of my lack of appetite, hunger and nausea.

I no longer take entecort or elavil and I only take one lialda a day now plus an anti-histamine.

In addition, I was doing acupuncture and following a strict diet for months. And I am still on my diet without deviations. We have to do everything we can to heal. Maybe you should mention lialda to your doc. It's an anti-inflammatory that's given to celiacs. And even Elavil. Not all docs know exactly how to treat this condition. Most of the time they learn FROM US, their patients.

As for stress, I used to use my lunch hour in my car with my ipod listening to meditation tapes and music. It made a huge difference. And I have given up over the years (I have another chronic condition as well) to many great jobs because of the stress involved. I don't think no job is worth your health and it's wonderful that you have a loving husband that supports you. So, maybe you need to start looking for something less stressful. I have been there and many of us have.

And practicing detachment as you have is a good thing. If you can maintain it.

Take care,

Monique

[wmonique2]

Tex,

I like all that historical perspective you gave us Thanks


Monique

[tex]

You're most welcome,
Tex

[Gabes-Apg]

Deb
for me, when i was working a stressful job, the acupuncture 'kept me going' type thing. each apt the inflammation levels were high and he would treat that, the immune system needed balancing, the adrenals needed balancing, and the liver needed balancing (leaky gut related)

even now I am in a similar cycle with an element of i work full time, to afford the medical insurance, to have the treatments to be well enough to work full time.
in the last 6 months i have changed roles, (taken a pay cut) so i could reduce stress at work. I do empathise with your situation. In my case i live alone, no family nearby so i have to earn enough money to support myself.



Sheila
no acupuncture treatment should hurt! in the 13 years i have been having treatments, there has only ever been about 4 times i have felt the needle.
even when I was really sick and inflammation levels high i did not feel the needle. Please dont let that one practitioner taint your view.
For any treatment - massage, physio, etc it is important to find a pracitioner that you like and can relax and enjoy the treatments

like others have written above, i too would relax and doze. the practitioner want you to do that, so you get optimum beneift from the balancing and clearing of the Qui