Acupuncture / Traditional Chinese Medicine?
September 20, 2014 at 6:40 am
Has anyone tried GBS treatment with TCM (Traditional Chinese Medicine)?
This typically involved acupuncture and herbal supplements.
I’ve started this as a treatment program. I’ve heard about a medical
review program started in 2009, but not the results:
In TCM, GBS is known as “weizheng”. A large number of studies of the clinical efficacy of acupuncture for treating GBS published in China have reported a beneficial effect of this type of medicine. Body acupuncture and electroacupuncture are reported as the most commonly used techniques for the treatment of GBS in China, alone or in combination with medications. Acupuncture is usually used after the acute phase to improve disability, with a reported rate of success in up to 90% of patients.
Background: A few weeks before my 50th birthday, I was diagnosed with GBS in late May 2014, reached nadir (low point) after 14 days. I was hospitalized for 17 days and received IVIg transfusion, followed by 3 months in a Rehab clinic, now released home with follow up therapies as an outpatient. Fortunately I didn’t have breathing problems but my legs became paralyzed, I lost half my arm strength, my blood pressure went up, my lower digestive tract stopped working, and my face became paralyzed. Before this illness I was quite sporty, bicycling & running & occasional marathons
Now (4 months later) I have mostly recovered in my arms. My blood pressure & digestion are normal. My hips / legs / ankles are weak but recovering and I try to walk several kilometers per day with Nordic walking sticks. I have residual tingling and numbness in my feet. The right side of my face has recovered but the left side is still paralyzed and I really really want it to come back. A consequence is that my eyes don’t fully close so they dry out (and earlier tendency, now made worse) and this gives me blurry vision especially in the morning. I never had problems inside my mouth, tongue & swallowing are normal. I took Lyrica for a while in the clinic, but I’m now off it completely and don’t regularly take pain meds – except enjoying wine & beer in the evenings as before.
I had an ECM the other day, and the neurologist said there are signs of axonal damage. I should wait another 3-6 months to see what happens. Probably a common concern is that waiting-and-seeing might not lead to much so I’m looking for treatments beyond what conventional medicine can offer – which isn’t much at this point, though I’m quite grateful for my recovery so far.
The TCM herbal medicine is:
Fen Fang Ji
Xi Xian Cao
Yan Hu Suo
Sang Ji Sheng
Shi Chang Pu
Ji Xue Teng
The corresponding botanical names are:
September 20, 2014 at 1:52 pm
Acupuncture is placebo. Chinese herbal medicineis mostly placebo. There are a few things with useful medicinal properties and others which are harmful. TCM is mostly harmless, but is not the place to find effective treatment for GBS.
GBS is self-limiting. Many people afflicted with it will make good recoveries with no treatment at all. This why some people think placebos are effective when they are not. The danger with such treatments is that they may encourage a patient to forego real medical treatment when it can make a difference in the outcome. It is known that earlier treatment (meaning IvIg or plasma exchange) generally leads to better recoveries.
Axonal damage takes a long time to heal, and the recovery will likely not be complete. Almost four years on I still have residuals in my legs associated with nerve damage. I expect it is permanent.
September 20, 2014 at 2:12 pm
I’ll add that four months is not a long time for recovery from GBS (and similar conditions). I did outpatient therapy for six months after coming home from the hospital, and continued to use a cane for several months after that. It was more than a year before I felt my upper body and arm strength were normal, and about three years when I concluded that my legs were about as good as they were going to get. One to three years to reach maximum recovery is typical.
September 22, 2014 at 5:27 am
Thanks MH for sharing your awareness and opinions. The time frame you suggest is in league with what I’ve read about this illness, but all of the literature and all medical staff I’ve spoken with say that a person’s affliction and prognosis are quite variable. Also there are many unknowns regarding treatment beyond the initial IVIg and plasma filtering; medical technology has not progressed as quickly as with other diseases. Even IVIg, the “gold standard”, is not officially approved yet for GBS but leaks over from other purposes. So we’re on the cutting edge of technology here, with several roads one can take – or none at all, depending on your predilections.
I believe it’s possible that some non-standard GBS treatments might work for some individuals but not all, or not in all circumstances. It’s not my intent (or in my interest) to further a rigorously controlled study with the usual double-blind criteria, but rather, to find out for myself what else might be helpful based on other people’s experiences. Hence I’m asking here about acupuncture and TCM, and I also have some interest in vitamin B12 supplements based on anecdotal suggestions elsewhere that this substance may encourage nerve regrowth. I’ve already modified my diet to include more Omega-3 fish and olive oil combinations – which is not a bad thing in general.
If placebos work, send me to the nearest store and I’ll pick up a batch! Many medical treatments started before the scientific underpinnings where established, though they were not necessarily as effective as they are now with current refinements. It’s not in my interest to do nothing but “wait around” for the slow science to catch up, so as long as these other methods aren’t harmful, why wait? It’s not as though I’m skipping physiotherapy now, but rather, I’m interested to supplement standard treatments with other things which might help, and getting started early in the healing process seems like a good idea (to me, anyway). The TCM opinion is that their medical benefits also take time, usually much slower than Western treatments, but the latter sometimes doesn’t work for some people or has nothing much to offer.
Despite controversy, acupuncture does have some grudging respect in the Western medical establishment as a useful tool to alleviate pain in some circumstances. Fortunately I don’t have much GBS pain now, just some residual foot tingling and numbness, so I’m more interested in finding out if it has additional healing properties for GBS. I do this by looking for other people’s experiences and I’ll summarize my findings here. Is anyone else interested in this, or have experiences to contribute?
September 22, 2014 at 12:40 pm
JDB, I’d suggest you read GH’s posts from the past. You can learn plenty. I know I sure have.
September 23, 2014 at 7:28 am
Sure, is there and easy way to catch those past posts with a simple search?
There seem to be a lot of “junk posts” about kitchens cluttering up the forum.
September 24, 2014 at 4:33 pm
Click on “GH”.
October 20, 2014 at 8:37 pm
If you are willing to concede that GBS and CIDP are conditions which are closely enough related for the answer to be relevant, then here is the answer.
Yes, I went to China (back in 2000-2009, so maybe things have changed) where I sought treatment and opinions. Yes, I was studied and poked and prodded at more than one major Chinese (Western) University Teaching Hospital and at one or two, or more, TCM Hospitals. Result? “Yes, we know of cases such as yours. Deadly? No. Progressive? Usually. Treatment? none! Well, you might try IVIG.”
Not a single one of these doctors in China offered acupuncture or herbals or any kind of treatment other than “Try IVIG.”
As for B-Vitamins- It might be considered well known that B-Vitamins are sometimes considered for nerve trouble. For example, From WebMD: “Nutritional deficiencies. Deficiencies of certain nutrients, including vitamins B6 and B12, may produce symptoms of nerve pain and nerve damage, including weakness or burning sensations. Nutritional deficiencies that cause nerve damage may also result from excessive alcohol ingestion or develop after gastric surgery.”
I am not aware of any reliable source stating supplementation with B-vitamins for the damage caused by either GBS or CIDP was successful. However, my family doctor once said- “Try a B-complex.”
If your neurologist has stated that you have axonal damage, you may no longer be in the GBS acute phase of disease. You may have moved on to the more chronic CIDP phase. Axonal damage should sound loud, alarm sirens for a fast, effective treatment. Not the months or years provided by a herbal solution. Muscle wasted due to axonal damage is probablyy muscle lost which will likely never recover.
Let “us” know how your TCM, including acupuncture, work out.
October 22, 2014 at 12:48 pm
Both Western meds and TCMs are known to have side effects. Good grief, what doesn’t? This morning I received my Mayo Clinic Health letter. In it was an article about Cholesterol-lowering supplements. Not your subject, directly, I know.
First, the link to the letter: http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/cholesterol-lowering-supplements/art-20113591/?utm_source=newsletter&utm_medium=email&utm_campaign=heart-healthy&pg=2
Second, to my point, taken from the letter: “Red yeast Red yeast is fermented rice that’s cultivated using a species of red mold. The Chinese have used it for centuries for medicinal purposes, as well as to flavor, color and preserve foods and beverages.
Benefits: Some products containing red yeast rice have monacolin K, which is the same cholesterol-lowering ingredient (emphasis is mine, the same ingredient!) found in the drug lovastatin (Mevacor, Altoprev).
Possible side effects: There is no way of knowing how much monacolin K is present in products containing red yeast rice. Some products also contain citrinin, a toxin that has been linked to kidney failure. Side effects of lovastatin, such as muscle pain and liver toxicity, may also apply to red yeast rice.”
In fact, for a few years the import of red rice yeast was prohibited. “Court Reverses FDA Decision to Ban Import of Red Yeast Rice Product CholestinT June 17, 1998: Boulder, CO”
The problem is, that without USP (USP Verified dietary supplements are products that have been voluntarily submitted to the USP Dietary Supplement Verification Program and have successfully met the program’s stringent testing and auditing criteria) you will never really know, you can only accept on faith, that the providers of your “meds” are reliable and that’s a big risk. One example from recent Chinese history- Melatonin added to Milk, yes even baby formula, to raise the apparent protein levels.
Of course, some Chinese supplements are well known and Government controlled, same as in this country. And the anti-cancer properties of certain mushrooms seem to be well accepted in the US and in Japan. I just read an NIH study yesterday regarding the Coriolus mushroom.
January 15, 2015 at 2:52 pm
I tried acupuncture as an alternative but so little difference. It did seem to stop some for the firing and burning but my CIDP which is in my lower legs and feet is also being treated with IVIG treatments – 4 hour drip every 5 weeks. I’ve been treating my CIDP with IVIG treatments since October of 2009. I thought I’d try acupuncture because going to treatments is getting old. I was diagnosed with a servere case of GBS in 2004, totally paralyzed except not intubated. Spent 100 days in the hospitals and the outpatient rehab. I had a set back in October of 2009 after gall bladder surgery so I didn’t make the 5 year window and was diagnosed with CIDP. I would like to seek alternative methods of treatments because my out of pocket cost for IVIG that insurance doesn’t cover is too much for me.
July 13, 2015 at 6:03 am
Here’s a follow up, one year later after my initial diagnosis of GBS. I feel quite fortunate about my recovery. I was diagnosed with GBS at the end of May 2014 and spent the summer first in a hospital and then in a rehab clinic for physiotherapy. At my lowest point: I couldn’t stand up or walk, I lost all my facial muscles, eyes would only close halfway, arms were weak but still working, lower digestive track shut down (had to plead for enemas), wild blood pressure fluctuations (mostly upwards), and I was generally uncomfortable with various pains including pins and needles in legs and feet. But – I was never on a ventilator, although my chest muscles were weakened.
I received IVIG right away. My arms and hands recovered rather quickly, and after much therapy and exercise, I’ve had a productive year 2015 with safe driving, cross-country skiing, bicycling, running — I ran a full marathon in April, with an uphill mountain marathon coming up at the end of July. My face has taken the longest to recover, and though my lips don’t fully smile yet, I’m optimistic. When I meet new people, it’s no longer obvious that I am/was ill, so I don’t have to explain myself any more. In addition to standard physiotherapy as an outpatient, I also did acupuncture and took daily Centrum vitamins and also a vitamin B supplement. I feel that all of these helped.
Now my therapists and acupuncture doctor say I’m done with their treatment and am more or less cured, although I still do some facial massages myself. I have minor residual pins-and-needles in my toes but rarely notice it – I started wearing “rubber footsie shoes” to expose my feet to the environment more and this seems to help.
My brother-in-law was very impressed and used my story in a corporate speech:
September 7, 2016 at 6:30 am
Now another year has passed, and I’ve been fully emerged in an active lifestyle. Sometimes I feel like I’m not doing as well as I used to, or can’t run as fast – that darn old GBS sure has lasting impact. BUT THEN… I realize that in my early fifties, I just might be feeling my age. No need for “GBS excuses” if, these days, I can’t run as fast or as long or as hard as I did in my thirties. So my GBS days are also a marker in time as well as a medical incident.
My most evident lingering effect of GBS is remnant muscle weakness (slight paralysis?) in my lips. I can’t quite smile anymore, I can’t curve my lips upwards. I need to be careful speaking lest I slur my words (letters P, B) without realizing it. No problems eating or drinking. I think new people I meet don’t really notice; heck, maybe I was always that way. I wonder if there is extra treatment for this? Maybe a bit of surgery?
March 27, 2017 at 4:18 pm
lamoosh, there is no structure because there is nothing there.
November 27, 2017 at 1:55 am
Thanks for the blog link.
January 13, 2018 at 8:11 pm
I tried acupuncture with a fellow who was an MD, in addition to TCM training. I went for several weeks, but stopped after no improvement.
I should mention that I endeavor to try everything that my doc suggests. It all goes into my medical record for future reference.
I’m 11 years out with CIDP. I was able to continue teaching at my university until this year.
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