=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #826 (26 March 2001) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. The ALS Digest is == == published (approximately) weekly. Currently there are == == 4700+ subscribers in 70+ countries. Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed. This newsletter is not intended to == == provide medical advice on individual health matters. == == Any such advice should be obtained personally from a == == physician. == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@met.fsu.edu (Bob Broedel) == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://www.glnicholas.com/ == == http://www.alslinks.com == == http://www.alssurvivalguide.com == == http://cc4144-a.ensch1.ov.nl.home.com/~digest == == http://health.oldeman.net == =============================================================== CONTENTS OF THIS ISSUE: 1 .. AOL problem 2 .. ALS CANADA NEWS - March 26, 2001 3 .. A New and Effective Treatment for ALS (1) ===== AOL problem ========== Date : Sun, 25 Mar 2001 >From : Wayne Phillips Subject: aol problem Maybe AOL software blocks the digest because it thinks it's spam because it goes to so many people? Wayne S. Phillips wsphillips@compuserve.com (2) ===== ALS CANADA NEWS - March 26, 2001 ========== >From : "Susan" Subject: ALS CANADA NEWS - March 26, 2001 Date : Mon, 26 Mar 2001 Stem Research Discussion Paper There will be a press conference in Ottawa on Thursday, March 29 - 10:30 EST. to present to the Canadian public a DRAFT discussion paper on Stem Cell Research developed by a working group established late last year by CIHR Director, Dr. Alan Bernstein. The discussion paper, including background documents and draft recommendations about stem cell research for Canada, is designed to stimulate a broad-based public consultation process over the next 2 months where Canadians are invited to contribute their views to the development of a final document. All may participate either through the web or in writing. We will forward the material either by attachment or by reference to the CIHR web site following the press conference. www.cihr.ca / www.irsc.ca We will have a limited number of print copies available at the ALS Society offices. The Board of the ALS Society will deliberate on this issue and consider a response. That does not eliminate the possibility of individuals entering the consultation with their own thoughts - in fact, we encourage people in the Canadian ALS network to participate. _________________________________________ To provide care and find a cure for ALS. Its time for a cure. Its time to care. Call to participate. Charitable registration: 10670 8977 RR0002 Susan Graham Walker Manager of Communications and Special Projects sgw@als.ca 800-267-4257 416-497-1256 fax 416-497-2267 ext 208 alscanada@als.ca www.als.ca 265 Yorkland Blvd., Suite 300, Toronto, Ontario M2J 1S5 (3) ===== A New and Effective Treatment for ALS ========== >From : "Harry Gould" Subject: A New and Effective Treatment for ALS Date : Wed, 7 Mar 2001 A NEW AND EFFECTIVE TREATMENT FOR ALS For the past three months I have been receiving a treatment for my ALS condition. This treatment has stabilized the progression of the disease and has shown some slight improvements in some areas. This treatment is not alternative medicine and supplements, but is very much mainline medicine. Before I describe this treatment, it will be helpful to describe the background and provide some details as to how, where, and why this treatment evolved. The case starts when a successful businessman from Spain and established in Puerto Rico, Jesus, age 68 at the time, was stricken with ALS. He was diagnosed by neurologists in Puerto Rico and shortly thereafter by Dr. Walter Bradley at the University of Miami. He was fortunate that his wife is a retired MD Cardiologist and even more fortunate that he has a most remarkable daughter, Mari, who is determined that her father is not going to die from the disease, and who also knows her way around the medical world. The family not only has financial resources to draw upon, but also is well connected to the medical community in Puerto Rico, and in the US by way of other members of the extended family, who are members of the medical profession. Jesus has the worst form of the disease, bulbar onset, with it attacking his respiratory functions first and shortly thereafter attacking all limbs. Shortly after being diagnosed in October of 1999, Jesus had a tracheostomy installed. By January 2000, three months later, he was put in a hospital and on a ventilator. He had been given 6 months to live by his neurologists. At the time he was admitted to the hospital, Jesus, had a chronic lung infection in addition to the ALS, which was attacking his respiratory muscles. His ALS neurologist turned his care over to another neurologist, Dr. Juan Moreira, who specialized in treating stroke victims, which demanded that he spend most of his care time at the hospital. Dr. Moreira noticed that each time he administered a treatment of IV gamma globulin to Jesus for his lung infection that he also noticed an improvement in his ALS symptoms, which would last for 2-3 days. This started Dr. Moreira thinking about what would happen if the gamma globulin was administered intrathecally. At this point I would like to take a few words and explain why and how I decided to take the treatment for my own ALS condition. During the spring of 1999, Mari put out a plea on the Internet with her phone number asking for anyone who had remised from ALS to call her. Although I had not remised from ALS, I called to find out why she was looking for remised cases. She explained that, if they could find enough remised cases, they would ask for blood samples. The samples would then be tested to look for a specific antibody or protein that might give them a clue as to why patients remised or stopped progressing. She had been following the work of Dr. Martina Berger, who discovered the Echovirus in the post mortem tissue of ALS patients. She went on to say that they had found fifteen remised cases. Needless to say, I was impressed. As it turns out, this was not the only approach Mari and Dr. Moreira were pursuing. She went on to describe that they were giving her father gamma globulin treatments intrathecally via a lumbar puncture for the past month, and that, although her father was still in the hospital, his condition had stabilized. I called back about two months later, and asked Mari how many remised cases of ALS they had now. When she replied three, I told her that the last time that we talked, she had fifteen cases. I asked, "What happened?" She explained that, when they carefully checked the diagnosis of each case, they found MS, MMN, etc., and, furthermore, she was not sure about the three remaining cases. For the antibody approach to work, it was essential to have well documented cases of ALS. Because of a lack of certified remised cases, they decided to abandon the antibody approach. I asked how her father was doing, to which she replied that he was doing better now, and was now living at home, and that they were continuing to give him intrathecal gamma globulin treatments. In December of 2000, I called Mari to check on her father's condition. She explained that he was not only living at home, but he was now able to get in his vehicle and drive to work each day. At this point I asked Mari if her Father's Neurologist would be willing to treat me. I then contacted Dr. Juan Moreira in San Juan and made arrangements to get the same treatments. My case is one of moderate progression. I was diagnosed in October of 1999 and at this point in time (December, 2000) I was still able to walk short distances like around the house and out to the car and back, using a cane or a stroller. My arms were similarly weak, but I was able to still dress and feed myself and attend to personal needs. I had very little bulbar involvement other than getting food lodged near my bronchial passageway, which would cause me to lightly cough most of the time right after I swallowed my food. However, my rate of progression seemed to be stepping up and I was concerned that I would shortly become dependant and high maintenance. Although the Christmas holidays were rushing upon us, my wife and I boarded a plane for San Juan on December 12 and were there until December 23. I didn't want to wait until after the holidays, for fear that I would lose too much of my independence. To tell the truth I didn't want to wait another day. During this period I received five treatments of the intrathecal gamma globulin. We returned to San Juan on January 3, 2001 for a second set of five treatments. We have since returned for a third and fourth set of treatments. I can honestly and objectively say that my condition has been stable during the past three months and in some ways I am slightly stronger. Before the treatments I was starting to use both hands to do things like lifting a spoon to my mouth, brushing my teeth, shaving, etc. I now do most of these things with one hand. I no longer choke when I swallow my food, which, understandably, was first noticed by my wife. I have, also, benefited from a very noticeable increase in my energy level. During our visits, we have had the opportunity to get to know Mari and Jesus. We can find no record of a patient receiving gamma globulin intrathecally before Jesus. Mari explained to me that they did the first injections cautiously and with great trepidation, not knowing what type of damage it could do to her father's central nervous system. As it turns out, Jesus, himself a very brave medical pioneer, has had in excess of forty injections and is doing fine. The only adverse side effect that he has experienced is an infrequent neurogenic bladder with incontinence for about 24 hours after treatment. This adverse effect is treated by emptying the bladder with a Folley Catheter. As for myself, I have not experienced any adverse side effects. The treatment, which is not FDA approved, is new and still experimental, with not much knowledge of how much and how often it's needed to be truly effective. Jesus started out with two injections a week and then was reduced to one a week after 20 injections. Dr. Moreira has been treating me with an injection every other day up until five injections, after which I return home and then return to San Juan after about 10-12 days. We currently plan to continue my treatments for up to a year or until my fasciculations are completely gone. We will then discontinue the treatments and see what happens. My fasciculations are currently about 50-70% diminished. The treatments for Jesus were discontinued after about 30 injections. After about 21/2 months his ALS progression returned, after which, he was put back on the treatments, arresting his progression. Although Jesus has been able to improve enough to get off the ventilator, he still has respiratory problems, in that his back muscles are weak, making it difficult for him to breath normally. His pneumonologist (sp?) plans to have his tracheostomy removed in the near future if Jesus continues to maintain his stability and continues to gain weight (he had lost 65 pounds), at which time he will be introduced to non invasive ventilation. The treatments appear to contra-arrest the abnormal Immune globulins with normal IgG. It appears to rescue some motor neurons that are partially functioning, but, at this time, Dr. Moreira does not think the treatment, by itself, will lead to the restoration of motor neurons that have been dead for some time and the body has sloughed off. Dr. Moreira and Mari are still looking at other possibilities if the gamma globulin does not put an end to ALS. One of the possibilities is stem cells, but they don't think stem cells are quite ready. They feel that stem cells need to be administered intrathecally to be effective and any stem cell treatment will call for repeated injections, similar to what they are doing with gamma globulin now. They also believe that in order for stem cells to have a lasting effect, the cause of ALS, if it is viral or autoimmune, needs to be addressed. Although the gamma globulin treatments go a long ways towards addressing the cause, other procedures may be necessary. Dr. Moreira is currently administering the gamma globulin treatment to 10 patients, of which Jesus and I are two of the ten. I am the only stateside patient with all the others being Puerto Rico nationals. Eight of the patients have seen stabilization. Two of the patients claimed they did not see any benefit and stopped treatment. However, one of these two, after stopping treatment, has asked to be put back on the treatment. Both of these patients had advance stage ALS. In most cases, Dr. Moreira has little to judge progression other than the patients' evaluation of themselves. Dr. Moreira had EMG and pulmonary function tests performed on me so that he could evaluate more scientifically how I was doing after six months. It is interesting that MMN and CIDP, two ALS mimics, which are autoimmune diseases of the nervous system, but mostly outside the CNS, are treatable and curable with IV gamma globulin treatments. It is also interesting that no researcher, which we know of, has tried intrathecal gamma globulin for ALS, which is also believed to be autoimmune. There are statements by the manufacturers that say gamma globulin is not to be used intrathecally, and it might be inflammatory to the nervous system. Perhaps these statements steered researchers away from attempting the treatment. Gamma globulin by IV was tried on a group of ALS patients with no benefit for the patients. Since gamma globulin has very large molecular structures, it is understandable that very little of the material gets past the Blood Brain Barrier. Dr. Moreira would like to try this treatment on a patient, who has recently been infected with ALS. He feels there is an excellent chance that a recently infected patient could actually be cured much the same way that MMN and CIDP are cured. Mari and Dr. Moreira were able to locate a paper in the New England Journal of Medicine, where a young boy with Echovirus Encephalitis was treated with gamma globulin by drilling a hole(s) in his skull near the ventricle area of the brain. He was given large doses of gamma globulin straight into the ventricles of the brain. The boy completely recovered (no relapse after 28 months) from the Encephalitis with no adverse side effects. With not much to go on from previous studies, Dr. Moreira used this paper as a model to compute what dosage level that might be effective for ALS in the CNS. The procedure is expensive and the medication is expensive. There are travel expenses. We certainly would not have returned to Puerto Rico for the second, third, and fourth treatments if we did not believe them to be beneficial. Dr. Moreira is a young and very bright MD Neurologist, who specializes in treating stroke victims. He attended Medical school in the US at Tulane University. After taking an interest in Jesus' case, he and Mari invested a lot of time researching different and unique approaches for treating ALS, before settling on the gamma globulin treatment. It was a bold move for Dr. Moreira as well as for Jesus. Dr. Moreira can be reached at: Ave. San Claudio #394 Urb Sagrado Corazon, Cupey, San Juan, PR 00926; Tele: 787-748-1371 For your information, I am posting the above information in the ALS Digest, ALS Survival Guide, and MGH Neurology. Puerto Rico is an interesting place to visit. The Puerto Ricans are wonderful and very friendly with many of them speaking English. My wife and I have not had any trouble in getting around because of our lack of Spanish. The traffic is bad with little parking space in the urban areas, especially compared to the western US. There are not many street signs to help a stranger navigate around San Juan. If any of you are interested in traveling to Puerto Rico, I would recommend using taxi's until you become familiar with the layout. The Condado area of San Juan is a good area to stay for reasonable rates and still be removed from the high crime areas. It is also reasonably close to Dr. Moreira's office. During the off-season (April thru November), some of the resorts offer some very attractive rates. Since Puerto Rico is a commonwealth with the United States, its people are US citizens and its currency is the same as in the US. For such a small island, Puerto Rico has many natural attractions. Some of these include the Camuy Caves, Phosphor Bay, El Yunque Rain Forest, and trips by ferry to some of the outlaying islands. Other attractions include the El Morro and San Cristobal Fortresses (constructions started in early 1500's), Arecibo Antenna, Old San Juan, El Conquistador Resort, Art Museum and mansions in Ponce to include a few. A ride through the mountainous interior will treat you to some eye-popping landscapes. It is a treat to watch the young boys ride the Paso Fino (Fine Step) horses in the rural areas. These are horses, which use a fancy stepping gait to provide the rider a smooth, non-bouncy, ride. You will not lack for interesting things to do during a lengthy stay in Puerto Rico. The weather is nice with 70 to 85 degrees during the winter months. The only time you will need a sweater or jacket is when you go to shopping malls or restaurants. The movie theaters will freeze you out unless you take some warm clothing. === end of alsd 826 ===