Date: Wed, 30 Nov 94 15:19:49 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#153 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#153, 30 November 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot's Disease == == == == 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 == == 410+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== === = Three issues of ALS Digest comming rapid fire. Thanks! rgds,bro === CONTENTS OF THIS ISSUE: 1 .. ALS/MND and Viruses 2 .. Experimental trial using Myotrophin 3 .. Usenet Newsgroup 4 .. YEAST INFECTION 5 .. Symptoms Changing Over Time 6 .. Medline 7 .. BiPAP 8 .. Fergie flies into Sydney 9 .. ALS fundraising & baseball 10 . Access to MEDLINE over Internet --- Summary (1) ===== ALS/MND and Viruses ========== Date : Mon, 28 Nov 94 12:44:33 PST >From : scottb@CERF.NET Subject: ALS/MND and Viruses To the International ALS Community: I am compiling a research file on the connection between ALS/Motor Neuron Disease and viruses (including enteroviruses and retroviruses). Some research shows a strong relationship... I want to know more, then summarize this information for the 100's of additional readers on this and other bulletin boards. Please use this Bulletin Board to inform me of: 1. Recent publications 2. Current research which has been completed but not published 3. Current research which is in progress and has not yet been published. Although I have compiled some articles, please DO NOT assume that I know about critical research on this topic about which you may be aware. Share EVERYTHING! My interests clearly include research being conducted outside the USA on ALS/Motor Neuron Disease and viruses, so I will be looking for much information from the international members of this bulletin board. Within the USA, I am looking for recent publications, and especially for current research which has not yet been published. Again, please use THIS bulletin board to provide me with the information requested above. However, IF you have a specific article(s) you wish to send, I will be glad to pay for shipping costs. Send to: Scott Bernard 56 Sandpiper Road Tampa, Florida 33609 USA Finally, I welcome any theories regarding the connection between ALS/Motor Neuron Disease and viruses. I have seen some set forth in recent articles, and I hope that many of the national and international scientists giving consideration to this matter will have additional hypotheses to share. One good hypothesis shared with 100's of other scientists can lead to many additional hypotheses... so share ANY hypothesis you have regarding the ALS/Motor Neuron Disease and virus relationship. I will summarize responses from this and other bulletin boards. I will provide this summary of the information I receive on this bulletin board in the next few weeks. Let's leave no stone unturned in our efforts to understand and treat this terrible disease. I await your input... Respectfully, Scott Bernard, Ph.D., MBA, MPH (2) ===== Experimental trial using myotrophin ========== Date : Tue, 29 Nov 94 08:50:42 EST >From : Judy Poff Subject: Experimental trial using myotrophin I am currently giving my husband two injections daily of the drug myotrophin produced by Cephalon. He was diagnosed with ALS 14 months ago. There has been so little information in the newsletter and elsewhere from others who are also in this trial. If there are others using this drug, we would like to hear what their experiences have been. My husband doesn't appear to have lost very much mobility so far and we are hoping that the drug has slowed the progress but we don't know if that's the case. Please provide any information you might have on this drug? Thank you. Judy Poff (3) ===== Usenet Newsgroup ========== Date : Mon, 28 Nov 1994 11:14:07 -900 (AST) >From : Greg Trautman Subject: Usenet Newsgroup I am slowly gathering information about starting a Usenet Newsgroup dedicated to providing people from all over the world who have access to the Internet and an interest in ALS and its related issues an unmoderated forum for exchanging information. Thanks for your note suggesting the name of alt.support.als for such a newsgroup. A brief reading of a newsgroup titled "news.announce.newsgroup", leads me to believe that newsgroups starting with "alt" aren't given as much of a world-wide distribution as those with something such as "sci" as in sci.med.als for example. If you or any of your subscribers can shed any light on this difference I would appreciate it. My Email address is: scoop@corcomcv.corcom.com I am also available to discuss this in real time via the Internet Relay Chat. Thanks, Greg Trautman (4) ===== YEAST INFECTION ========== Date : Tue, 29 Nov 94 19:48:56 EST >From : jsuarez@nsf.gov Subject: *YEAST INFECTION* MY WIFE ELLEN AND I GOT THE IDEA A COUPLE OF WEEKS AGO WHEN SHE READ IN A BABY MAGAZINE THAT A YEAST INFECTION MAY CAUSE DANDRUFF. WELL, YOURS TRULY HAS HAD CHRONIC DANDRUFF FOR YEARS NOW. SO WE DECIDED TO CALL MY NUTRITIONIST/ENVIRONMENTAL DOCTOR ABOUT THE YEAST INFECTION AND ALS. HE CHECKED TO SEE IF I HAD OTHER SYMPTOMS OF A TYPICAL YEAST INFECTION SUCH AS A WHITE COATING ON THE TONGUE AND LOOSE STOOLS. AGAIN, POSITIVE FOR ME, THESE CONDITIONS HAVE ACTUALLY EXISTED WELL OVER A YEAR NOW. HE WENT AHEAD AND PRESCRIBED DIFLUCAN FOR 30 DAYS LAST WEEK. HE AND I SHARED THE SAME PHILOSOPHY THAT A YEAST INFECTION MAY NOT BE THE DIRECT CAUSE OF ALS, BUT MAY BE A CONTRIBUTING FACTOR ALONG WITH OTHER AGENTS. MY THOUGHTS ARE IF YEAST AND SUGAR BASE JUICES COMBINED CAN CREATE ALCOHOL, WHO KNOWS WHAT OTHER BI-PRODUCTS RESULT AS WELL. LAST TUESDAY I HAD A CONSULTATION WITH MY IMMUNOLOGIST ABOUT POSSIBLE ALPHA INTERFERON TREATMENT. WE DISCUSSED THE POSSIBILITY OF THE YEAST INFECTION BEING A CULPRIT IN ALS. HE SAID IT COULD WELL BE A POSSIBILITY, BUT HE COULD NOT SAY MUCH ABOUT THIS BECAUSE IT WAS NEW TO HIM. HE ALSO DISCUSSED A BOOK, "THE YEAST CONNECTION" BY DR. CROOK,MD, THAT IT WAS REVOLUTIONARY AND/OR CONTROVERSIAL. I HAD ALREADY BOUGHT THAT BOOK IN THE MORNING BEFORE SEEING HIM, SO WHEN I RETURNED FROM THE DOCTOR'S VISIT I BEGAN TO READ THE BOOK WITH MUCH EXCITEMENT. IT IS A TRUE EYE OPENER BECAUSE WHAT I WAS READING SEEMED TO FILL THE GAPS OF WHAT ALS RESEARCHERS ARE INVESTIGATING, THE SPECIFICS BEING: 1) ALS IS CAUSED BY A LOW LEVEL VIRUS. A YEAST INFECTION IS A LOW LEVEL VIRUS INFECTION THAT CAN EXIST WITHOUT DETECTION. DETECTION IS DIFFICULT BECAUSE THE YEAST INFECTION CAN HIDE ANYWHERE (E.G. IT CAN HIDE IN YOUR NOSTRILS). 2) THE IMMUNE SYSTEM IS IMPAIRED AND MAY BE AFFECTING THE NERVOUS SYSTEM. A YEAST INFECTION COUPLED WITH OTHER AGENTS, CHEMICAL OR TOXIC, MAY CAUSE DEMYELINATING NERVE CONDITIONS. 3) ALS COULD BE CAUSED BY VARIOUS VIRUSES SINCE THE PROGRESSION OF ALS VARIES FROM PERSON TO PERSON. DOCTORS CANNOT PREDICT THE COURSE OF ALS FOR ANYBODY OR FOR ANYONE. YEAST INFECTIONS EXIST IN MANY DIFFERENT FORMS THUS MAY AFFECT PEOPLE DIFFERENTLY. AFTER 3 WEEKS ON MEDICATION MY TONGUE IS HALF WAY CLEAN. I AM ALSO PURSUING A YEAST FREE DIET ALONG WITH VITAMIN SUPPLEMENTS AND AVOIDING UNNECESSARY CHEMICAL EXPOSURE INCLUDING PESTICIDES AND PRESERVATIVES IN FOODS (ONLY EATING ORGANIC FOODS). ELLEN AND I ARE VERY EXCITED ABOUT THIS AND PLAN TO SEE A SPECIALIST AS SOON AS POSSIBLE. WELL, THERE YOU HAVE IT! WHAT DO YOU THINK? I THINK THIS IS A HOT AREA THAT SEEMS TO HAVE BEEN IGNORED AND NEEDS SERIOUS ATTENTION. JAVIER SUAREZ JSUAREZ@NSF.GOV (5) ===== Symptoms Changing over time. (fwd) ========== Newsgroups: alt.med.cfs Date : Mon, 21 Nov 1994 05:16:38 -0500 Sender : Chronic Fatigue Syndrome discussion CFIDS/ME : >From : CFS-MED Moderator Subject : Re: Symptoms Changing over time. (fwd) ================================================== Date : 21 Nov 1994 08:51:49 GMT >From : James Jacobs <75151.3250@CompuServe.COM> Subject : Re: Symptoms Changing over time. I have a sensation of my muscles "sliding down" my backside. This can occur either while I am standing or lying in bed...it is one symptom that I have only had for about 6 to 8 months although I have been chronicly fatigued for 5 years or so now. I get very concerned that I may actually have Lou Gehrigs Disease and I put my poor husband (he is VERY supportive) through that much more agony!!! Do I need MORE psyco-therapy or has anyone else experienced something that fits in anyway with what I have described??? I am an presently non-employed Physical Therapist Asst. and as the old saying goes a little knowledge goes a long way...or so I am told and often!!! -Rebecca- (6) ===== Medline ========== Date : Sun, 27 Nov 1994 14:02:15 -0500 (EST) >From : DPTHOMPSON@delphi.com Subject: Medline My wife earlier in the year was diagnosed with multiple sclerosis, showing impairment of speech and cognitive functions. After considerable tests and therapy with no remission or improvement, she was referred to a teaching hospital where the consulting neurologist diagnosed the condition as ALS, bulbar. The local neurologist is unconvinced, mainly, I believe, because of the cognitive impairment - he accepts now, after a spinal tap and a second MRI, that MS is not present. I was interested to see, therefore, the paper on ALS with dementia in ALS#150, Document # 94367686 in Medline. How does one access Medline and either obtain a document or a digest of a document? And if you or anyone on the list has information relating to this subject, I would like to hear about it. Thanks, Dennis Thompson DPTHOMPSON@DELPHI.COM (7) ===== BiPAP ========== Date : Sun, 27 Nov 1994 22:22:35 -0500 >From : SadieJanie@aol.com Subject: BiPAP Regarding difficulty in breathing with ALS: Hi! Does anyone have any experience with a biPAP (not sure if I'm spelling it correctly?) It is a term used for a procedure and equipment that blows oxygen into ones nasal passage which then goes into the lungs. This requires a 4 or 5 day hospital stay to teach the patient how to use it and to learn to be comfortable with it. My mother in law is in the hospital as I write this and seems to be having difficulty being able to use this. Any suggestions or help you can give us will be appreciated. ==== = The BiPAP is manufactured by: = Respironics, Inc.; 1001 Murry Ridge Drive; Murrysville PA 15668-8550 = TEL 800-345-6443 or 412-733-0200; FAX 412-733-0299 bro ==== (8) ===== Fergie flies into Sydney ========== By TOM ANDERSON SYDNEY, Nov. 29, (UPI) -- Britain's duchess of York has arrived in Sydney on a three-day visit to raise awareness of motor neurone disease (MND), also known as amyotrophic lateral sclerosis. Fergie was accompanied by her sister, Jane Luedecke, who lives in Australia, and Kevin Langdon, president of the Motor Neurone Disease Association. The disease is often referred to as Lou Gehrig's disease in the United States. (9) ===== ALS fundraising & baseball ========== THE HARRISBURG PATRIOT 11/25/94 By Rosa Salter Headline: Charities' coffers feel impact of sports strikes Credit : The (Allentown) Morning Call For years, medical charities have been using professional athletes to make their pitch. And now, some are hoping they won't have to drop the ball for their clients because of the recent labor turmoil in professional sports. Take the Philadelphia-area chapter of the ALS Association, for example. Last summer, the group, which helps victims of amyotrophic lateral sclerosis, better known as Lou Gehrig's disease, scheduled an autograph party and baseball memorabilia auction for Aug. 25. With appearances by the Philadelphia Phillies before a home game at Veterans Stadium, the event was sold out by July. Organizers expected to raise nearly $500,000. Then the Phillies and every other major league baseball team went on strike. The auction was rescheduled for late September. But the strike still hadn't ended, and the ALS chapter had struck out. Although many patrons didn't ask for their $15 tickets back, the group is still out about $175,000, chapter president Ellyn Phillips said last week. "We didn't have the auction, so we didn't sell any of the merchandise, therefore we have an inventory but we also have a major deficit," she said. "The strike has had a dramatic impact on us." The auction provides about 40 percent of the operating budget for the chapter, which supports a clinic at Hahnemann University Hospital in Philadelphia, an equipment loan system, van service and in-home care for patients, as well as support groups and educational conferences for patients, families and medical personnel. (10) ===== Access to MEDLINE over Internet --- SUMMARY ========== Date : Mon, 28 Nov 1994 14:37:10 +0100 Sender : "Clinical WANS: Design & Usage" : >From : Timothy Skellett Organization: Heinrich Heine Universitaet Duesseldorf Subject : Re: Access to MEDLINE over Internet --- SUMMARY (long!!!) SUMMARY: Access to Medline et al over the Internet 1) Gregory W. Froehlich wrote: >Since the early 1970's, the National Library of Medicine (NLM) has made >searching the biomedical literature faster and easier by providing >online information retrieval on the MEDLARS, (MEDical Literature >Analysis and Retrieval System) family of databases. MEDLINE - NLM's >premier database - has over 7 million citations to biomedical articles >and is searched more than eighteen thousand times a day. > >In order to make searching even easier and provide a user-friendly way >to use the MEDLARS system, NLM, in 1986, developed a software package >called Grateful Med. The simplicity and efficiency of searching with >Grateful Med have made it immensely popular -more than 50,000 copies of >the software have been sold since its introduction." (You can also >access Medline through commerical services like PaperChase, etc- more >costly). > >Step 1: Get a user ID/password. You can call the National Technical >Information Service at 1-800-423-9255 for info. Or, be a cyberstud and >get the application form 'userid.txt' by anonymous ftp from >nlmpubs.nlm.nih.gov in the directory /online/medlars. > >Step 2: Decide whether to use a front end (Grateful Med) or to learn >how to communicate directly with MEDLINE (HINT: pick door #1). >Download it from the same server above (check through the /grateful >directory for the files you need) or order it from NTIS (see Step 1, or >get the order form 'gmorder.txt' in the directory /online/medlars). >It's $30 or so the latter way. > >Step 3: If you decide against using Grateful Med, you can access >MEDLINE through programs like Telnet at medlars.nlm.nih.gov. You'll >need an ID/password. You can also access MEDLINE through commercial >services such as PaperChase (Telnet to pch.bih.harvard.edu, enter >pch,signup when it asks for password) > >$$$: NTIS charges for access; I seem to pay about a dollar a search. >Commercial services will be more expensive. >------------------ >Greg Froehlich, MD >White River Junction, VT ------------------------------------------------------------------------ 2) You can access MEDLINE via NIH gopher server or WEB server, but you need to have a pre-established account. It is not free, and you need a password to get into the system. I can get the proper address if you want it. Edward Druy -- Edward M. Druy, MD | emdru@unix1.circ.gwu.edu Department of Radiology | emdru@aol.com George Washington University Washington, DC 20037 ------------------------------------------------------------------------ 3) I am pretty sure, that you will NOT be able to get medline on the internet for free. We (the university of Copenhagen) have estabished a medline service on network (actually an internet connected system), but we have to pay licenses to both the software manufacturer (CDPlus) and National library of medicine. Therefore I doubt that this service can be *free*. Sincerely Anders Nattestad ------------------------------------------------------------------------- 4) The Medlars server is at medlars.nlm.nih.gov. If you need an account (using it does cost money) you need to contact the Medlars service desk at mms@nlm.nih.gov or gmhelp@gmedserv.nom.nih.gov. Good Luck Elizabeth richards@vms.ocom.okstate.edu ---------------------------------------------------------------------------- 5) THE LAST WORD I am quite willing to make Medline searches for people, subject to the following conditions: A) That requests are made personally to me B) That requests are reasonably short C) That it is understood that I have access only to MEDLINE EXPRESS, which means I can only get two lines of the abstract (I find this also incredibly frustrating and behindering; I would like to make the general request here: If anyone who has access to MEDLINE, with full abstracts, can download a few searches for me, I will reciprocate by sending software, info, or whatever is desired and possible etc...) D) That it is understood that replies may take up to a week. Tim skellett@ling.uni-duesseldorf.de Many, many thanks to all the people who have helped me. Tim === end of als 153 ===