Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 HI Tom, your results with the LDN is great! Do you take any other meds with the LDN? I was wondering if you can use it with other meds? I have got to talk to my neurologist about this. Please keep us posted about how you are doing. Hugs, Bonnie > > > Date: 2003/09/22 Mon PM 12:34:41 EDT > To: > CC: " A Home away from Home a MS Support Board " , > <MSfriends >, > <MSViews_Multiple_Sclerosis >, > <MSersLife >, > <msalternatives >, > <lowdosenaltrexone@yahoogroups> > Subject: Re: LDN > > Hi All, > I've been asked to post an update since I began taking " LDN " . > > I started taking " LDN " on July 15, 2003. The first night I took the LDN at 9:30 PM. Within two hours I had increased sensations in my feet and ankles. I could curl my toes for the first time in several years. I slept through the night also the first time in several years. I only had to get up once during the night to urinate. This was a very significant change, it had been 3-4 times every night for several years. > > Since 7/15/03 I have continued to take the LDN at 9:30 PM every night. Since that time the above improvements have remained constant. This past week or so I have noticed increased leg strength and stability especially in the morning. There are times when the increased leg strength is also noticeable later in the day but not always. > > There has not been anything negative. I do have an increased sense of well being and generally feel quite good. Several people have told me as recently as yesterday how wonderful I look. These are people that I do not see on a regular basis. > > My next appointment with Dr. Bihari is next week and I am looking forward to it. There is no doubt that LDN " has made several significant improvements. I had fairly significant spasms before I started LDN and still have them. Overall, I feel better and an doing better with no side effects of any kind. > Regards, > Tom > LDN > > > Dear Tom, > > You may recall that I belong to the yahoo chat group....trying to keep posted on what is working for MS for a friend. > > I have followed your situation with LDN, and I wonder if you would kindly post an update. How are you doing today? How long has it been? Have you done anything else significant, the effects of which might also be contributing to your status. > > I would so much appreciate this...and thank you kindly for your caring and sharing. > > Best regards, > > Grayce Stratton > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Hi Bonnie, No, I do not take any other meds. The only meds that would conflict with LDN are opium derivative drugs. Regards, Tom LDN> > > Dear Tom,> > You may recall that I belong to the yahoo chat group....trying to keep posted on what is working for MS for a friend.> > I have followed your situation with LDN, and I wonder if you would kindly post an update. How are you doing today? How long has it been? Have you done anything else significant, the effects of which might also be contributing to your status.> > I would so much appreciate this...and thank you kindly for your caring and sharing.> > Best regards,> > Grayce Stratton> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 ty, Tom. It could work on me or if not, it´d not have side-efects! But, here I was not able to find it and no1 has conversation with this public neuro. I like these informations about LDN! 1day, who knows? I´ll be able to try it! regards XXXXXX Andreia LDN Naltrexone (Low Dose Naltrexone) The following explains Low Dose Naltrexone (also known as LDN) from a layperson's perspective that everyone should be able to understand. Please note that we are not medical doctors, and that there is no formal proof of the following statements; they are merely informed hypotheses. You should always do your own research and consult with your doctor before undertaking any medical treatment. The simple explanation:Naltrexone is an FDA approved drug (1984) that was originally intended to treat people suffering from opium (e.g., heroin) addiction. It treated these addictions by blocking the "pleasant" effects from the drug, so addicts who took it did not get "high" anymore. How does it block the "high?" There are receptors in our brain that an opioid like heroin would use to get into the cell and do its deed. Naltrexone blocks those receptors, so the heroin can't have an effect. Think about it like a puzzle piece-- some brain cells have a piece that accepts opium and its derivatives, and the Naltrexone simply matches that piece. When the heroin floats around, it has no where to go. OK, that's all well and good, but what relevance is there to Multiple Sclerosis? Well, those opiod receptors in our brains are not JUST for receiving drugs like heroin-- our bodies actually produce opiods every day, among other things, we produce a set of hormones called endorphins. So if you were to take Naltrexone, you would actually block the reception of something your body produces. These hormones, as it turns out, play a very important part in controlling the immune system. Keep this in mind for what we'll talk about below. The FDA-approved dosage for heroin addicts was 50 milligrams per day. This ensured that those receptors were blocked all day and there was no chance that any heroin could connect with a cell and give the user a "high." BUT a medical doctor named Dr. Bihari found that if you give someone a much lower dose, say THREE milligrams instead of 50, you would not block the receptors all day, but just for a couple of hours. After that, everything would function as normal. But the human body is funny-- when you block something, it often responds by producing more. In other words, if you were to take Naltrexone at a low dose (Low Dose Naltrexone, even!) you would block the receptors for a couple hours. The body would notice that it was not receiving the endorphins it produced, so it would think "Since they're not getting though, I must not be producing enough-- turn it up!" The gland responsible for producing the endorphins, called the pituitary, would respond by producing significantly more. Not enough to cause any problems, but enough to make a difference. So how can this all matter for Multiple Sclerosis? Remember how we discussed above that the endorphins actually regulate the immune system? Well, in Multiple Sclerosis, the immune system is malfunctioning-- it's attacking it's own body. Anything that helps regulate, control, and tame the immune system could potentially have a positive effect on MS. And that's exactly what some people who take LDN report-- a halt of the progression of the disease, and even some improvement in symptoms. Adding some scientific validity are studies that show that in MS patients, the pituitary gland (which produces endorphins) shrinks as the disease progresses. This shrinkage can be assumed to correspond with less endorphin production, though the link is not concrete. The million dollar question is: is the pituitary gland shrinking BECAUSE of the MS, in which case fixing the pituitary is more like treating a symptom rather than the cause, OR is the pituitary smaller in people who have multiple sclerosis and could potentially be a, if not the, cause of the disease in the first place? In other words, is a shrunken pituitary a cause of MS or is it an effect? If it's a cause, making up for the lower endorphin output by taking something like LDN could have significant positive implications. There is a catch to all of this-- there are no formal, clinical trials on taking low dose naltrexone for multiple sclerosis. All there is is speculation, a few doctors backing it, and most remarkably, many positive testimonials from patients. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 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 yahoo 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? 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Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 ty, Tom! once again I say ''Brazil is a crap!'' I´d like using LDN but here we can´t find it out! even 4 alcoholism it´s difficult here! Regards, Andreia XXXXX visit my web page and sign my guest book: http://msmemoriesandthoughts.bravehost.com/ LDN 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 yahoo 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Hi Audry! -----Original Message----- From: Audrey Hi Tom, Just curious, has your wife tried the recommended 4.5 mg dose? According to Dr Bihari this was found to be the optimal dose for most people. He suggests starting at 3 mg for the first month and then increasing the dose to 4.5 mg. In my personal experience, it also makes a difference at exactly what time LDN is taken at night. I feel best if I take it around 10 pm, giving the opiate receptor sites enough time to be blocked that my body's endorphin production is significantly increased in response. Ive heard from a few people that it's worthwhile to experiment a bit with exact dosage and timing to get the best results for yourself. ~Audrey >>>>>>>>>>>>>>>> No she hasn't. I had heard that 3.0 was optimal for Women and 4.5 for men although I don't know where I heard it. Perhaps you can tell me where to look on the dosage side. Also, I had heard that 9:00PM was the earliest you should take it and 3:00 AM was the latest because of the way the body produces endorphins. Tom Nesler Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Hi Tom! That's great! I believe action from either the legislative and/or judiciary branches of government is the only way to get the NMSS to sponsor research on LDN, diet, food supplements, and other alternative MS treatments. The NMSS generally turns a deaf ear to what MSers have to say--as if they somehow don't count, or aren't qualified to represent themselves. All the best, Dudley http://profiles.yahoo.com/dudley_delany Quote Link to comment Share on other sites More sharing options...
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