=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #855 (19 May 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Gamma Globulin Treatment, #2 2 .. injectable glutathione proceedure? 3 .. Immunokine 4 .. re: alternative treatments 5 .. celebrex (1) ===== Gamma Globulin Treatment, #2 ========== >From : "Harry Gould" Subject: Gamma Globulin Treatment.....Rambling Points Memo #2 Date : Thu, 3 May 2001 GAMMA GLOBULIN.. Rambling Points Memo #2 For those who are new to this forum, I urge you to read my original story, "A New and Effective Treatment for ALS", posted on March 7 in this forum. If you have an interest in this treatment after reading the original story, continue by reading the replies and follow the discussion up to the present date by reading all the posts and replies about Gamma Globulin and Puerto Rico. I have received a number of inquiries on how I am doing with the treatment. I am holding steady with my ALSFRS scores. After carefully going over the rating system, I see no need to change any of my scores. My ALSFRS Numbers: [2/1/00: 40/40] [5/1/00: 35/40] [12/6/00: 29/40] [3/16/01: 31/40] [4/20/01: 31/40] [5/3/01: 31/40] My clinically measured FVC breathing scores are: [1/11/00: 82% at Mayo] [3/6/00: 79% at Scripps] [12/14/00 63% at Puerto Rico] [5/1/01: 70% at St. Joe's, Phx] My FVC measured 70% on May 1, 2001 up from 63% the prior December. I know this is a for real improvement, because last December, before the GG Treatments, my back was starting to droop because of weakening back muscles. My back is now erect most of the time. I have no doubt that without GG my breathing would have been well down into the 50's or lower by now, five months later. This further confirms in my mind that the GG does work, at least in my case. After my last trip to Puerto Rico, I was off the GG Treatment for exactly four weeks. During the latter part of this period, my fasciculations increased and I could notice some increasing weakness. Since returning to the GG Treatment on March 26, I noticed a very slight increase in strength and diminished fasciculations. My swallowing was most noticeably affected with the gagging or choking effect returning while I was off GG, and diminishing again after returning to the GG Treatment. Although my breathing has shown some improvement, I feel that my arms at the shoulders are ever so slightly weaker than they were 5 months ago when I started on the GG Treatment. This change is so slight that it is difficult to measure and could be a result of being off GG for four weeks. However, I can now operate the reclining lever on my favorite reclining chair, which I could not do about 8 months ago and up to time I started the GG Treatments. I was in the chair several months ago and tried to operate the lever and found myself stranded in the chair, because the lever has to be fully engaged before it will release. Unable to fully engage the lever, I had to call for a member of my family to rescue me. I can flat out state that for the last five months I have had to make no adjustments in my life style, which in the past I was making adjustments monthly and often times weekly leading up to the GG Treatments. Just last week we were at the Imax Theater at the Grand Canyon and I was able to climb several stair steps with assistance, which is about where my legs have been for the past five months. I have been successful in locating an anesthesiologist who is willing to give me the treatments in my own home. I have had twelve treatments in my home, which brings me to a total of thirty-two treatments. I am frequently asked, "How are the patients in Puerto Rico doing?" This can best be answered by helping you to understand that there are two types of patients in Puerto Rico. There are those who are prone to get headaches and those who do not. A headache caused by a spinal fluid leak is among the worst imaginable and can last for days. It is most unfortunate that these headaches happen, because it can nullify the expected benefits coming from the GG Treatment. With some of the patients reaching up to 10 treatments, I am beginning to get some favorable reports from those who do not get the headaches. However, one month is too early to tell, and anyone considering taking this treatment should get at least 20 treatments over a period of two months before deciding that it is not benefiting them. However, they may decide before the 20 that it is benefiting them. In my case I had 10-15 treatments before I realized that my ALS had stopped progressing. I am impressed with the patients in Puerto Rico and feel that they will be objective in their evaluation of the GG Treatment. I want to encourage these patients to report how their GG Treatments are doing, both the bad and the good effects. These headaches bring me to another subject, lumbar needles. If PALS are considering taking the GG Treatment, you should know that the doc needs to use a Sprotte or Whitacre lumbar needle and do not let him stick you with a Quincke needle. My anesthesiologist likes the 22 gauge needle. Dr. Moreira, along with most all Neurologists, has been accustomed to using the Quincke needle, but he has recently switched to the Sprotte or Whitacre type. For more reading on the subject check the site below. http://www.btinternet.com/~ms_pages/ComplicationsofLumbarPunctureandTheir Prevention.html "Headache is the most common complication of lumbar puncture,[2] usually lasting 1 week or less, and occurring in up to 40% of patients when using the traditional bevel tip or Quincke needle. Although the risk of headache can be dramatically reduced to about 5% by the use of atraumatic or pencil tip needles such as the Sprotte or Whitacre, most neurologists in the United States have never heard of the needles and only 2% use them.[3] By contrast, anesthesiologists commonly use the atraumatic needles. I have been using the Sprotte needle for 3 years, especially in patients at high risk for headaches (eg, young women having lumbar puncture to evaluate the worst headache of their life or possible multiple sclerosis), and have seen a dramatic reduction in headaches." "Because the tip of the needle is relatively dull, a sharp short introducer is provided with the Sprotte needle. The introducer should be inserted about two thirds of its length or even less in a small, thin person so as not to puncture the dura. The feel of the atraumatic needle during the procedure is a little different from that with the Quincke's sharp cutting edge, as you have to push a little harder during insertion. The cost is higher for the atraumatic needle than for the Quincke -- the Sprotte 20, 21, and 22 G 3 1/2-inch needles are about $12 each vs about $4 for the Quincke; longer Sprotte needles are also available." I am finding it relatively easy to locate willing doctors to administer the treatment. Look in the yellow pages for an anesthesiologist or an anesthesiologist practicing pain management and/or homeopathic medicine. The procedure is short and simple, which is do a lumbar puncture, withdraw some spinal fluid, and inject in an equivalent amount of gamma globulin solution. The ALS-TDF has supplied us with some very good material, which should help PALS to convince a doc that this is a prudent procedure for an ALS patient. This resource is discussed in an earlier post and at the end of this post. I want to emphasize that for those willing and able to travel to Puerto Rico, it would be best to get a jump-start on the treatment from Dr. Moreira. Dr. Moreira is investigating combining the GG Treatment with other treatments, which will, hopefully, bring an end to ALS. He is currently charging a very reasonable $9000 for the first 20 GG Treatments. Once you are on the treatments, it is easier to convince a doctor to administer the treatments at home. The best way to contact Dr. Moreira is by fax. His office number is 787-748-1371, which is sometimes hooked up to the fax machine. His fax number is 787-292-5770, but the fax is not always on. You should try the fax first and then the office number. Turn on your fax machine after dialing the numbers. It is best to fax him a single sheet with some questions, leaving spaces where he can write in the answers, and have him fax it back. However, the protocol is now available and probably easier to get from the ALS-TDF. There is more information on this availability at the end of this post. Some doctors have expressed concern to ALS patients that the treatment could be harmful to their CNS. I want to emphasize that this treatment is new and we are still finding things out about it and there could be long- term risks. Mr. Alcalde has now been on the treatment for 13 months and several others, including myself, for five months or more without any noticeable harm to our CNS. I feel for myself that it is a prudent risk to take, because I have ALS, which I know beyond any doubt that it will lay waste to my CNS if I don't take measures to arrest it. Dr. Moreira has used extreme caution in developing this treatment. Before he administered the first dose to Mr. Alcalde, he found several cases where Gamma Globulin was administered intrathecally. Most notable of these are for cases of Encephalitis where the Gamma Globulin was injected straight into the ventricles of the brain. From the ventricles the GG flows directly into the spinal column. None of these cases describe any lasting or harmful effects to the CNS. After proceeding to inject small amounts intrathecally into Mr. Alcalde and having tests done on the spinal fluid and watching for harmful side effects, he would up the dosage. We should all realize that he had a patient that soon would be dead if he did not take these measures. I commend him for taking these measures, and I am grateful that we, with ALS, now have a treatment that is truly effective. Some doctors have expressed concern that the GG Treatment could cause serious infection, including meningitis. Another PAL mailed me a very good article, concerning the problems with IVGG and IVIG, which are pretty much the same thing. I am including the address for this article, so PALS can decide for themselves the dangers of infection from ITGG. Although the article discusses IVIG, it has a good discussion on the preparation of the GG itself. The article discusses Aseptic Meningitis in 10% of cases of IVIG. This could be a less frequent happening with ITGG, because I am not aware of any cases of Meningitis with the ITGG Treatment as administered by Dr. Moreira. I have included two quotes from the article, which follow the address. http://www.acponline.org/journals/annals/01may97/globulin.htm "The IVIg preparations available in the United States are now safe with respect to the transmission of known viruses or infections. Donors are scrutinized for the human immunodeficiency virus (HIV); the human T-cell lymphotropic virus; and the hepatitis A, B, and C viruses. Furthermore, HIV and the hepatitis B virus are inactivated by the fractionation process. The effectiveness of this was confirmed experimentally by intentionally adding HIV to IVIg (8). In addition, treatment with solvents, detergents, or enzymes and incubation at low pH, as currently applied, inactivates the hepatitis C virus and other viruses (11). The human immunodeficiency virus has never been transmitted through the use of IVIg. In the United States..." "Aseptic Meningitis Aseptic meningitis develops in as many as 10% of patients treated with IVIg and is unrelated to the commercial source of the IVIg product, the infusion rate, or the underlying disease (20, 89). Prophylaxis with intravenous steroids is often ineffective. The symptoms respond to strong analgesia and subside in 24 to 48 hours. Additional diagnostic testing is rarely necessary (89)." Good news for those who want to try the Gamma Globulin Treatment in the states. I have heard from other patients that ALS-TDF now has the ITIG protocol ready. It was written in cooperation with Dr. Moreira. Patients interested in the GG Treatment should read both the ALS-TDF's statement regarding their investigation of the GG Treatment and their section of FAQ's on the GG Treatment. When approaching a doctor to administer the treatment, you should have print outs of both of these papers along with my original story, "A New and Effective Treatment for ALS", which was posted on this website on March 7. Approach a doctor with these documents and explain to him that he can obtain the complete protocol by emailing bjauss@als-tdf.org for more info. The protocol is intended for distribution to medical professionals only and is not intended for distribution to patients or caregivers. ALS-TDF Website: http://www.als-tdf.org/index.htm ALS-TDF's statement regarding the Gamma Globulin Treatment: http://www.als-tdf.org/iGG.htm ALS-TDF's FAQ's on the Gamma Globulin Treatment: http://www.als-tdf.org/itiGGqa.htm (2) ===== injectable glutathione proceedure? ========== Date : Thu, 19 Apr 2001 >From : Kuenz Heating & Sheet Metal Subject: Re: My friend (John) is interested in the injectable glutathione proceedure. well. We would like to have more information on this proceedure. Does anyone know where this proceedure is being done, the out come, the bad side effects? Any information will be helpful. my e-mail is kuenz@swbell.net. (3) ===== Immunokine ========== >From : "Nancy Watkins Jones" Subject: Re: Date : Sat, 19 May 2001 http://www.phylomed.com/Immuno.htm Guys, it appears I spelled the word wrong. It is Immunokine instead of Immunikine. The above link can tell you more. (4) ===== re: alternative treatments ========== >From : Bernie Windham Subject: re: alternative treatments Date : Tue, 17 Apr 2001 >W. Sampson wrote: >Mr Windham is in error. I do not want to carry on another debate here >as we had over mercury and amalgam fillings, faith healers and other >anomalous method claims. The cases of cure or improvement he knows >should be verified by neurologists. The cases are not to be believed >until then. But internet sites alone are not scientific proofs. Readers >will not find such cure and improvement claims in neurology texts, major >journals and will not find reputable neurologists using or neurology >professors teaching such methods. Most people on this list will >recognize such aberrant claims. The cases I know were treated by well qualified doctors; And I know of others diagnosed with ALS who have recovered after being treated for Lyme Disease. A medical study documenting that this appears fairly common was just posted. But why all the talk about faith healers, etc. Have you heard me suggest such. I've supplied over 100 peer reviewed medical studies documenting that mercury, root canals, and Lyme Disease all cause nerve damages consistent with ALS condition/symptoms; and documenting the mechinism by which the damage is done; followed up by animal studies that showed similar effects. And medical study references of people diagnosed with ALS who've recovered or gotten significantly better. And the medical lab sites that I listed and clinics have over 1000 peer reviewed studies, and a test for ALS that I believe has been approved by FDA. They also have extremely good credentials. Internationally known in their fields. Have lots of published peer- reviewed studies. But I haven't seen Dr. Sampson take direct issue with any of the peer review references I've posted or those on the sites in question. If a scientist or doctor has knowledge that studies published in peer reviewed journals are in error, one is supposed to write a comment article to the journal in question pointing such out. This allows peer review to judge who is correct. Lets talk about specifics and site references or clinical cases, rather than just giving unsupported opinions. I don't claim that mercury, other toxic metals, root canal toxins, or lyme cause all ALS, or that all who are tested and treated for such will recover. But I'm not the only resercher or doctor who is convinced that the evidence is strong that these causes are a major factor in some cases and some who intevene properly and early improve significantly or recover afterward. My web site article on ALS is www.home.earthlink.net/als.html It has lots of references. People can decide for themselves whether the case is convincing. I welcome specific constructive criticism. B. Windham (5) ===== celebrex ========== >From : pmgok@earthlink.net ("Pat Gerew") Newsgroups: sci.med.diseases.als Subject : Re: ALS Digest #829 (30 March 2001) Date : Sat, 19 May 2001 I would like to know if anyone has heard or read anymore on the testing of the drug celebrex on ALS. We want to start this drug on our own, but are not sure of dosage. has anyone tried it, had any side effects? or good results? === end of alsd 855 ===