Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Jodygirl certain docs feel CRAB’s and Novantrone represses the immune system and as LDN is believed to boost they feel taking them in tandem doesn’t make sense… but you can take them together. Some members here do. Out of all of them the one that those doctor’s feel is alright with LDN is Copaxone. But again there is no contraindications of taking the others with LDN so if you wish to use them together it’s fine. By the way I had heard you were against LDN what’s changed your mind? From: Jody [mailto:jodycasbarro@...] Sent: Tuesday, January 06, 2004 12:00 PM low dose naltrexone Subject: [low dose naltrexone] LDN HI EVERYONE, I JOINED BECAUSE, IM THINKING ABOUT TRYING THIS. BUT I'D LIKE TO READ UP FURTHER ON IT. SO, YALL WE'RE SAYING YOU'D HAVE TO STOP ALL A,B,C,'S, NOVANTRONE IS OK? BECAUSE I HAVE ANOTHER YEAR ON IT. HOW MANY OF YOU ARE ON THIS LDN? HOW IS IT WORKING FOR YOU? JODYGIRL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi Jodygirl It's working for me. My spasms have eased up quite a bit. I was able to cut my spasms medication in half. My hand doesn't go numb at night anymore. I sleep at night not like before. I haven't fallen since being on it. I have been on it for 7 months and use to fall all the time. I have had MS for almost 27 years and this is the best that I have felt in all those years. What have you got to loose, it is worth the try. Good luck Marie ----- Original Message ----- From: " Jody " <jodycasbarro@...> <low dose naltrexone > Sent: Tuesday, January 06, 2004 11:59 AM Subject: [low dose naltrexone] LDN > HI EVERYONE, > I JOINED BECAUSE, IM THINKING ABOUT TRYING THIS. BUT I'D LIKE TO > READ UP FURTHER ON IT. > SO, YALL WE'RE SAYING YOU'D HAVE TO STOP ALL A,B,C,'S, NOVANTRONE IS > OK? BECAUSE I HAVE ANOTHER YEAR ON IT. > HOW MANY OF YOU ARE ON THIS LDN? HOW IS IT WORKING FOR YOU? > JODYGIRL > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Gees its sound to me like your are doing well and have had " miraculous " results. At the very least, the results are far better than anything else you did and it sounds like tou've stopped the progression. Debbie --- In low dose naltrexone , " dbrett " <dbrett@u...> wrote: > I was diagnosed with MS in 1985. I have done the crab drugs. Avonex was like having the flu all the time. I had exacerbations every 6 week to 3 months the 2 years I was on Betaseron. I quit the injections against my neurologists advice. I went on the LDN 4 months later. . I had a deep vein thrombosis June of 2002. I spent 9 weeks in bed and ended up having an MS attack due to the stress of the DVT. I haven't had any of the miraculous results that I've read about on the LDN site. I had the muscle stiffness on 4.5 so reduced to the 3.0 dose. After a couple of months I don't have the stiffness, I sleep well, have more energy than I've had in years and feel the ldn is well worth using. I haven't had an MS attack since July 2002. Low Dose Naltrexone is not toxic and I could see no reason not to try it. My family Dr. read the info I downloaded off the net and gave me a RX; because it isn't toxic and wouldn't hurt to try it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Thanks, we needed that!!! Everyone should hit "SAVE"!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 ----- Original Message ----- From: Capekid2 A Home away from Home a MS Support Board ; msersLife ; msalternatives ; mscured ; MS-Christians ; MSViews_Multiple_Sclerosis ; MSfriends ; MS Information area. ; Holy_Mother_Saints_Pray_For_Us ; jjworld Sent: Saturday, January 10, 2004 10:23 AM Subject: Re: LDN New Message on A Home away from Home a MS Support Board LDN Reply Reply to Sender Recommend Message 18 in Discussion From: Capekid2 A Page of Reading on Low Dose Naltrexone and MS bcmeikle@... Nov 15.2003 There is not enough work done in this area. Dr. Bihari's work needs to be replicated over and over, and a lot more publishing and tests need to go on. The first page for anyone to read when looking at this topic is here This is Doctor Bihari's page of information and findings.(although he's not directly linked to it) The specific area for MS and LDN is here . So if you've read that far, you see a claim of 98% efficacy in MS treatment. These numbersare not even backed up by the anecdotes I've collected, but there's still a LOT of success. A useful repository of anecdotes is at remedyfind As I write this up, Naltrexone is the number one medicine there for people with MS. This is clearly misleading, but it shows the support this medicine is getting from patients. I mean have you read these reports ? So, we have support from patients, and some anecdotes, is that all? I find this quote from a pharmacist supportive: As I have said before, if I had MS, the only drug that I would absolutely betaken is LDN. I wouldn't care what it took, or who I had to insult. In 4years of dispensing LDN, with over 10,000 patient months, I have heard ofonly three cases of exacerbation. I am wainting for our new resident to comein and I will have exact numbers, but this is truely a no-brainer. I wouldfind some one to prescribe it no matter the cost or effort.Dr.Skip...and these two mp3 radio interviews(turn down your volume!): first part , second part A VoyForums discussion group.A discussion groupYet another discussion group. What are endorphins ? It looks like the British are replicating Bihari's work nicely. A real test by real scientists on LDN and Crohns ...Here's a paper by White on LDN and MS . So is this work being replicated and used elsewhere? Sites like goodshape suggest it is. Another page there. An article on the Irish government's interest in the cost savings associated. Would they back a study? What other governments/ agencies would gain from a cheaper,more effective MS medications, and would back a study? An article on other re-use of existing medications for MS Endorphins and chili ? and TV ? chemical structure ? and stress ?and acupuncture ?and excercise ? and the chemistry of sex ?and Birth Labour ...Here's a paper on Endorphins and Anelgesia Here's a paper on ultra low dose naltrexone These guys are selling a drug that claims to boost your endorphin levels...same with this ...Alternative medicine's look at how endorphins restore balance in body ...Naltrexone's battle to become a treatment for alcoholism .This page has a list of Healthy ways to raise beta-endorphinsDutch site on LDN (english paragraphs too...) PAPERSI am not a doctor, this is just patient-to-patient info. If we look at a list of Bihari's claims, the first is that people with MS have fewer endorphins. In this paper, Italian Researchers look at endorphin levels in relation to MS in a scholarly, scientific way. this paper is recent and important...So if MS patients don't have enough endorphins, does that mean that the petuitary gland that makes them is broken in people with MS? Dysregulation of the hypothalamo-pituitary-adrenal axis is related to the clinical course of MS So LDN tricks the body into creating a lot of endorphins. But endorphins are mostly known for their painkilling, euphoric nature, they don't actually balance the immune system do they? Enkephalins are a kind of endorphin .Another paper :Enkephalins, brain and immunity: modulation of immune responses by methionine-enkephalin injected into the cerebral cavity.The animal model of MS is EAE. (experimental allergic encephalomyelitis)This paper discusses Changes of experimental allergic encephalomyelitis by methionine-enkephalin injected into lateral ventricles of the rat brain.This paper discusses Enkephalins and immune inflammatory reactions.Another paper looking at Enkephalins and autoimmunity another Rat behaviour studies. Escape attempts. I had to include this because it talks about 'learned hopelessness' something I worry that many MS patients have... The pituitary gland makes our endorphins... THE IMMUNOMODULATING EFFECTSOF SPECIFIC OPIOID ANTAGONISTS AFTER THEIR INTRACEREBROVENTRICULAR APPLICATIONA google search on endorphins and immune modulation All articles at medline by Jankovic and Maric LDN addictive? This paper says no. Unlike drugs, however, activation of the opiate receptors by the body's endorphins does not lead to addiction or dependence. Cool looking book on NeuroImmunoModulation conclusion:I personally feel fairly confident that Bihari's claims may be true. I would guess at more like 80% efficacy though, from the anecdotes. Perhaps there are some patients whose petuitaries are atrophic or damaged so even with the naltrexone tricking the switch to' on' the glands can't produce more. From the literature,I'm fairly confident that MS patients have lower endorphins,'and more dysregulation in the petuitary. It seems certain that boosting the endorphins will relieve pain, provide euphoric mood, and in general, make the patient happier. Bihari's regimen seems to do most of it's mind altering while the patient sleeps so the patients don't feel stoned while they're awake. But we ARE mucking with the brain's natural opium. Will it stop MS progression?That's the interesting question. There is a body of work that suggests an immunomodulatory effect of endorphins. Most of the MRI's are coming back with no change... The tests on Crohns are a good thing. I'd like to see the same for MS. Time will tell... Addendum(Dec.12 2003): I found a few new papers. The same Italian team that published the paper on endorphins and MS above published a paper on an increase in endorphins in people on interferons A paper on endorphins and their flow seasonally in lambs... supplies some great references regarding circadian links here...Here's an american paper that measures the immune systems abilities with added endorphins... It's good to know that rather than just eae there is murine coronavirusMore h/p/a axis stuff, and this the immunomodulatory effects of some opiate antagonists . Test your endorphin levels.Got feedback? I have a discussion forum . with a thread on LDN Here's Bihari's Pa tent on LDN and MS There are 2 new collections of anecdotes. One here and one here . Also I had to write a disclaimer/skepticism/doubt page. Are endorphins really created between 2 and 4? View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from A Home away from Home a MS Support Board. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 I definitely hit save. Thanks from me as well. <---info seeker Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 HI i have a question i've heard that you should take ldn at the same time at night but what if you have different hours that you work what do you any advice would be would help thanks in advance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 The time one takes LDN is more a factor of ones interaction with the raising and setting of the sun. One should take it at the same time regardless of work schedules, hours, shift, etc. Do not change your time with daylight savings time, keep on standard time (farmers time, it used to be called here abouts). B. ----- Original Message ----- From: c banger low dose naltrexone Sent: Sunday, January 11, 2004 1:38 AM Subject: [low dose naltrexone] ldn HI i have a question i've heard that you should take ldn at the same time at night but what if you have different hours that you work what do you any advice would be would help thanks in advance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 This question is dealt with on the ldn website ;o) Go check it out! From: c banger [mailto:chr-vau@...] Sent: Sunday, January 11, 2004 1:38 AM low dose naltrexone Subject: [low dose naltrexone] ldn HI i have a question i've heard that you should take ldn at the same time at night but what if you have different hours that you work what do you any advice would be would help thanks in advance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 yep that was my case too just goes to prove that unlike nerologists Dr.s work for you not against you and if you are knowledgeable about this they will be on your side( as long as they won't get sued) in my case anyway! Reg. -------Original Message------- From: low dose naltrexone Date: 01/22/04 11:58:14 Cc: Hi everyone Subject: [low dose naltrexone] LDN skraggz827, When I went to my GP I went armed with the paper work about LDN and MS. He asked if I wanted to try it and when I said yes, he said no problem. So go with the paper work in hand. Kathy Quote Link to comment Share on other sites More sharing options...
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