ALS (amyotrophic lateral sclerosis) was first identified about 130 years ago. During the past 60 years it has been called Lou Gehrig's disease, named for the most famous of its victims (1903-1941), who had been a popular and vigorous baseball player until the disease struck. However, as memory of his life fades, the term ALS has become the preferred designation. This is a rare disease: in the U.S. it affects about 1-2 persons per 100,000 each year, with a cumulative total of about 25,000-30,000 living with the disease at any one time. It most often occurs in persons over 50 years of age (rarely before age 40), with more men than women affected. It is a degenerative disorder of the central nervous system that leads to weakening and wasting of the muscles. Depending upon which neurons are first affected, the disease will manifest differently among individuals, but eventually all four limbs become involved and there may be considerable cramping and stiffness that develops with the partial loss of nervous control over the muscles. A normal course of disease progression is to reach the point that respiration is affected within 5 years after the initial symptoms and diagnosis, causing death. There is about a 5% rate of survival past 12 years, and some people live more than 20 years, while others have rapid disease progression within just 2 years.
Riluzole was the first drug for ALS approved by the U.S. FDA. The drug inhibits glutamate release; glutamate is one of the major neurotransmitters and is an essential part of nervous system function. Excess levels of this amino acid are thought to be involved in ALS and some other neurological diseases, by causing nerve damage and death. Riluzole is far from an ideal therapy: it can have side effects (nausea, vomiting, or worsening of disease condition), it is quite expensive, and the survival effects are an average 2-3 month extension in life span. New drugs have been disappointing. For example, Myotrophin (insulin-like growth factor-I) had been used as an off-label application for ALS since 1991, apparently slowing the progression of muscle deterioration. Submitted for drug approval for ALS treatment five years ago, the FDA delayed granting approval because it did not have adequate evidence of efficacy and this drug appears to be out of further development for ALS, having displayed only modest results at best. Another example is BDNF (brain-derived neurotrophic factor), which appeared to slow the deterioration in breathing capacity, but further tests failed to confirm the result and research on it has been discontinued.
A growing body of research suggests that ALS, especially the hereditary type that appears at younger age, is associated with a defect in the enzyme called superoxide dysmutase (SOD), an antioxidant system, in which the SOD produced by the body changes from an antioxidant (that is protective to nerves) to a pro-oxidant that damages the nerves. Thus, antioxidant therapies might help slow progression of the disease, at least in individuals with this genetic defect. The possibility of beneficial effects from antioxidants has been proposed, but has not been confirmed. Indeed, many people with ALS turn to taking nutritional supplements rich in antioxidants but do not report significant improvements; formal studies have yet to be undertaken.
Due to the limited impact of readily available therapies, patients and their families may opt to seek out Oriental medical assistance, which is becoming more accessible every year as the number of practitioners grows (now at about 15,000 in the U.S.). Practitioner experience with ALS, due to the rareness of the disease, has been limited; fortunately, there is some information from China available to help guide treatment strategies.
Acupuncture is thought to influence physiological functions via the nervous system, and especially by promoting blood circulation . Nervous system disorders, including various paralytic diseases, such as stroke, traumatic paraplegia, and progressive myodystrophies, are treated by acupuncture in China. It is thought that promoting the microcirculation (capillary bed circulation) to the spinal cord can enhance the natural regenerative capabilities that exist. From the traditional medicine point of view, acupuncture can open the blocked meridians, including the one running through the spinal column known as thedumai or governing vessel (du = govern, supervise, direct; mai = channel, vessel, meridian). Whether neurons are damaged by physical trauma, blocked circulation of blood (as occurs in stroke), or by biochemical processes (e.g., oxidation reactions, excess glutamate), the principle of treatment via acupuncture remains the same. Two techniques are especially relevant to central nervous system diseases: scalp acupuncture and spinal acupuncture. Both involve treatments on or along side the governing vessel, which runs up the spine to the head, running over the center of the scalp
Scalp acupuncture is applied in the treatment of all neurological disorders. Most experience with this technique has been in treatment of stroke, but scalp acupuncture has shown some promise in treating degenerative neurological diseases as well. Zhu's Acupuncture Medical and Neurology Clinic in San Jose, California , headed by Zhu Mingqing, provides scalp acupuncture treatments. Many acupuncturists in the U.S. have learned this method of treatment and can administer it closer to the home of the person with ALS, who will need treatment regularly for many months. The scalp acupuncture technique is best applied while movement is still close to normal, as the effects are most dramatic when the person moves of the affected body parts while the scalp needles are being manipulated. While there are several zones for treatment on the scalp, a major focal point of this acupuncture technique is threading needles along the scalp on either side of the Governing Vessel at the top of the head near the point baihui (GV-20).
For spinal acupuncture, two doctors have given some detailed recommendations: Wang Leting (1894-1990), whose method is described in the book Golden Needle Wang Leting (1) and Cheng Yongde, a specialist in encephalatrophy, Parkinson's disease, and ALS, currently working at the Municipal Hospital of TCM of Haimen (near Shanghai) in Jiangsu Province. Cheng published an article on treating 46 patients with ALS in a 1998 issue of the Shanghai Journal of Acupuncture and Moxibustion, with a shortened version published in the English-language edition of that journal. An extended version of the article was published in the Zhejiang Journal of Integrating Traditional Chinese Medicine and Western Medicine in 1999.
THE METHOD OF WANG LETING
Spinal treatment focuses on points of the governing vessel on the back, mainly from fengfu (GV-16), a point on the neck about 1 inch into the hairline, down the spine to yaoyangguan (GV-3), at the lower lumbar region of the spine (between L4 and L5 of the lumbar vertebrae). Fengfu is the point at which the governing vessel is said to enter the brain.
Wang Leting performed acupuncture in many cases of stroke and paraplegia utilizing these spinal points. His work on paraplegia is relevant to ALS, because the basis for the treatment is not dependent on the precise cause of the disorder, but, rather, its location of the pathology in the spine. His main methods for treating paralytic disorders is to administer acupuncture to a group of points on the governing vessel as well as a group of the Hua Tuo points on either side. The set of points he recommends for treating the governing vessel includes baihui (GV-20) at the top of the head and changqiang (GV-1) just below the tip of the coccyx, and then this series along the spine:
This group of 13 points constitutes one treatment, which can be treated along with and alternated with other point sets that are deemed necessary, especially theHua Tuo points. Administering acupuncture each day, alternating treatment between two sets of points so that the treatment on two consecutive days is not a repetition, is standard practice in China for treating serious diseases.
Herbal therapies for ALS are aimed at nourishing the kidney to benefit the marrow and spinal cord, and at vitalizing blood to soften the sclerosis and to invigorate the circulation to the affected muscles. The traditional formula most often mentioned for treatment of wasting syndrome is Huqian Wan (Hidden Tiger Pill), which is sometimes modified by adding additional tonic herbs . A key herb in this formula is tortoise shell, which is used for flaccidity and debility, especially of the lower limbs. However, the basis for the design of Huqian Wan is the concept that a heat-type disease damages the yin fluid, leading to the atrophy of muscles. For this reason, Huqian Wan contains rehmannia, tortoise shell, and peony to nourish and retain the yin essence, and anemarrhena and phellodendron to quell the deficiency fire of the kidney that threatens the remaining yin. Although this mechanism may apply to some cases of ALS, there is no clear evidence that a heat-type syndrome precedes its development or that yin deficiency heat dominates the syndrome. Thus, treating flaccidity as if it is due to yin deficiency with heat may-like the idea of treating it as if it is due to spleen deficiency, with failure to nourish and generate the muscles-be inadequate for diseases of the spinal cord. So, other ideas must also be considered.
Regeneration of the damaged nerves and bones is often attempted with deer antler or its gelatin, which is considered one of the main herbs for tonifying the governing vessel. Tortoise shell and antler gelatin were used in a case study involving ALS. The formula, provided to a small number of patients, had deer antler gelatin, tortoise shell, rehmannia, tiger bone, dipsacus, cuscuta, eucommia, atractylodes, licorice, (with astragalus added for a later prescription), eucommia, achyranthes, tang-kuei, peony, phellodendron, anemarrhena, and citrus (5). As described in the case of paraplegia due to injury (6): "The governing vessel travels along the back and is in charge of the yang qi of the whole body. Damages in the governing vessel cause yang deficiency." For this reason, many modern formulas for flaccidity and wasting, such as this one, also include yang tonic herbs, such as dipsacus, deer antler, cuscuta, and eucommia.
A formula Yisui Tang (Boost the Marrow Decoction) used for progressive spinal myodystrophies, including ALS, is similarly formulated: it is made with tortoise shell, deer antler gelatin, rehmannia, dipsacus, cuscuta, atractylodes, licorice, astragalus, psoralea, cibotium, achyranthes, tang-kuei, peony, millettia, phellodendron, and anemarrhena. This combination, given as a decoction with 9-15 grams of each ingredient (except only 5 grams each of phellodendron and anemarrhena), was used to treat 110 patients, of which 30 were diagnosed as having ALS (7).
As pills, the herbs are taken in doses of 3-9 grams each time, 2-3 times daily (total dose 9-18 grams per day), while the decoctions are taken in high dosage of 150-180 grams per day. The clinical reports in which the herbs were utilized claimed benefits for ALS patients, though the small number of patients involved makes it somewhat difficult to interpret the results.
A disadvantage of herb-only protocols in the West is that it is too easy for a patient to become discouraged if there are a few difficult days and then stop taking the herbs. This easy discontinuance of therapy occurs especially because herbal therapy is not a routine practice here, so there is little support for continuing treatment. With regular office visits for acupuncture, it is easier to adjust the herbal treatment as needed and to give immediate symptom relief with the acupuncture while, at the same time, encouraging compliance with the herbal protocol.