Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Anyone here currently on ldn for ALS. A gal that works for me…her father is newly diagnosed, and we are looking for some info for him, and support…..Any doctors prescribing ldn for ALS? Would a neurologist do that? Conni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Hi, I am here, still waiting for good news of ALS/LDN . thanks Marita From: Geraldine Sent: Friday, May 22, 2009 10:08 PM low dose naltrexone Subject: [low dose naltrexone] Parkinsons Ii would love to hear of Parkinson's/LDN stories. Please email me.Geraldine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Marita It might be a little quiet this holiday weekend - a lot of people might be away or busy with family. - In low dose naltrexone , " MARITA " <maritaparodi@...> wrote: > > Hi, I am here, still waiting for good news of ALS/LDN . > > thanks > > Marita > > > From: Geraldine > Sent: Friday, May 22, 2009 10:08 PM > low dose naltrexone > Subject: [low dose naltrexone] Parkinsons > > > > > > Ii would love to hear of Parkinson's/LDN stories. Please email me. > Geraldine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Marita, As I've told you privately before, I know of many with ALS who find LDN a godsend, but also others who it doesn't seem to help. Maybe those people have candida or something working against the LDN. I've heard LDN is getting good feedback on patientslikeme.com for ALS, so if you aren't already on PLM I recommend joining it. cat707k wrote: > Marita > It might be a little quiet this holiday weekend - a lot of people might be away or busy with family. > > - In low dose naltrexone , " MARITA " <maritaparodi@...> wrote: > >> Hi, I am here, still waiting for good news of ALS/LDN . >> >> thanks >> >> Marita >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Hello , It´s nice to comunicate with you again. As I told you before, we have the 1.5mg,2mg, 3mg, and 4.5 mg doses from Skip pharmacy in the bedside table. 6 months ago, Alfonso start taking the 2.mg dose, but he felt , as i told you at that time, chest pain, and I remember you told me it is not a known side effect from LDN. We felt discouraged , when we read about many cases, that developed imsomnia, bad dreams, nightmares, bad sleep. Beacause Alfonso , although was diagnosed ALS almost 5 years ago, he doesn´t have fatigue, as you will see in PLM, most patients with ALS have as the main symptom ¨fatigue¨. He sleeps very good, we usually go to bed at 12, and we wake up at 7 am. no naps during the day, no resting. We are afraid, that if we loose that good sleeping, fatigue will appear. !! What do you think? Do we should take the risk? Marita From: C Sent: Saturday, May 23, 2009 9:21 PM low dose naltrexone Subject: Re: [low dose naltrexone] Re: ALS Marita,As I've told you privately before, I know of many with ALS who find LDN a godsend, but also others who it doesn't seem to help. Maybe those people have candida or something working against the LDN. I've heard LDN is getting good feedback on patientslikeme.com for ALS, so if you aren't already on PLM I recommend joining it.cat707k wrote:> Marita > It might be a little quiet this holiday weekend - a lot of people might be away or busy with family.>> - In low dose naltrexone , "MARITA" <maritaparodi@...> wrote:> >> Hi, I am here, still waiting for good news of ALS/LDN .>>>> thanks>>>> Marita>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Keep a journal of the sickness and treatments. Do simple repeatable tests such as taking a walk and measuring times and distances. My journal has been critically important in my health care journey. Amyotrophic lateral sclerosis (ALS), often referred to as " Lou Gehrig's Disease, is also associated with Lyme disease. The Lyme disease documentary " Under Our Skin " covers that topic. After I noticed that the CRAB drugs were making me measurably weaker, LDN was my break-away from the standard MS treatments and a critical step in asking questions for myself. When I was still getting physically weaker, I switched to the German drug ethyl-amino-phosphate (EAP). My right hand quit working in Aug 07 and I went on a quest for a Lyme Literate Medical Doctor (LLMD) to at least get a reliable diagnosis. In March 08 I was diagnosed with Lyme disease. The diagnosis was confirmed by my Jarisch-Herxheimer reaction to doxycycline. (it felt like being run over by a Mack truck and left on the road dead). This morning in May 09, I'm typing with all ten (10) fingers. For your viewing pleasure: 20 minute video on Lyme misdiagnosis (there is an LDN video in this link also) http://vimeo.com/2354218 Trailer for documentary " Under Our Skin " . Available for $35 from www.underourskin.com > > Hello , > It´s nice to comunicate with you again. > As I told you before, we have the 1.5mg,2mg, 3mg, and 4.5 mg doses from Skip pharmacy in the bedside table. > 6 months ago, Alfonso start taking the 2.mg dose, but he felt , as ....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Hi Marita, Particularly in the case of a disease like ALS any decision has to ultimately rest with yourself and Alfonso. However, my non medically based input into that decision is that from all I've read the chest pain would not seem to be associated with the LDN, though obviously if it then abated when he stopped then who knows? As for the insomnia, bad dreams, nightmares and bad sleep I know people have a right to comment on what is happening to them but sometimes I just wish they'd all shut up and get on with it because the people who don't have any such problems rarely write in to say so. Therefore people like yourself and Alfonso who I'm sure would benefit from LDN get frightened off it unreasonably because you only hear from the people having problems, so it sounds all doom and gloom. In actual fact only a small percentage of people have problems, so in all likelihood Alfonso won't. Did he have any insomnia or bad dreams when he started? I actually sleep far better now than I did in probably at least 10 years before starting LDN. Many others find the same. Cheers, MARITA wrote: > > > Hello , > It´s nice to comunicate with you again. > As I told you before, we have the 1.5mg,2mg, 3mg, and 4.5 mg doses > from Skip pharmacy in the bedside table. > 6 months ago, Alfonso start taking the 2.mg dose, but he felt , as i > told you at that time, chest pain, and I remember you told me it is > not a known side effect from LDN. > We felt discouraged , when we read about many cases, that developed > imsomnia, bad dreams, nightmares, bad sleep. Beacause Alfonso , > although was diagnosed ALS almost 5 years ago, he doesn´t have > fatigue, as you will see in PLM, most patients with ALS have as the > main symptom ¨fatigue¨. He sleeps very good, we usually go to bed at > 12, and we wake up at 7 am. no naps during the day, no resting. > We are afraid, that if we loose that good sleeping, fatigue will > appear. !! > What do you think? Do we should take the risk? > > Marita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Has been covered many times before here. Log in to low dose naltrexone/msearch_adv and do a search for ALS in the Subject. Definitely worth a try! I have a form of motor neurone disease related to ALS and know many people using LDN for ALS with very good results. Then again, it's such a mongrel of a disease I know some it didn't seem to work for. wendy Gfeller wrote: Would be grateful for any info on LDN and ALS. Thanks in advance. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.