Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 What do they say, in summary? n At 04:23 03/04/03, you wrote: >Bihari is fdoing >studies with the naltraxone and has his publications all there in the waiting >room. He expects it to be approved in t he near future n Canberra, Australia http://members.austarmetro.com.au/~julian/photo-an/photo-an.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 That it's great.. it works and has virtually no side effects. If you're interested, call his office. 212 9294196. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 I was hoping for a bit more info! I have used LDN for years, and I agree with " works and no s/e " - but I was wondering what his trials were using it for (CFS or cancer, AIDS,...?) and in what way it was great. I suppose I can wait till he publishes but I wrote to him once and he suggested he might never be published for some reason, and he certainly has had a few years to get his stuff into the journals. As I'm in Australia, and broke, there is not a lot of benefit in wanting to visit him. Cheers, n At 21:38 03/04/03, you wrote: >That it's great.. it works and has virtually no side effects. If you're >interested, call his office. 212 9294196. Good luck. n Canberra, Australia http://members.austarmetro.com.au/~julian/photo-an/photo-an.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 You can call him and have a phone conference. You do not have to see him. You can also ask his secretary or his wife to mail or fax you copies of his studies. They are also probably on line somewhere. I had zero lymphocytes before the naltraxone. Now they are normal and have been so since I was on it for 3 months. That speaks for itself. Dr B is an old man. A brilliant old man. He has been on the naltraxone for years, himself. No side effects. So has his wife, w/o side effects. For me, it is the only med w/o side effects. Don't know how old you are, but do you remember how in the past , under Mayor Ed Koch, the methadone maintenance program was started for drug addicts? It caught a klot of criticism. Well, the was Dr Bihari, the " rebel " . He uses it for AIDS, cancer, and CFIDS. It is " great " in that it gives you back your lymphocytes. It starts a cascade of neuroendocrine events that increase T cells and CD8's. Hope this helps you. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 > > > Has anyone tried low dose Naltrexone to treat CFIDS? Apparently this works, I think it's 3 mg. When I first got this 4 years ago, found out on my own about naltrexone being NK stimulant so ended up doing 50 mg tabs!! Only took a few though. I don't think you want to be on any narcotic, as this antagonizes the mu receptor, but since you take the naltrexone at night (I believe), probably wouldn't matter if you are. BTW: alot of people get an energy bump out of pain meds (wouldn't suggest oxycontin), but if you respond to things like vicodin or straight hydrocodone (I would suggest hydrocodone DM as DM antagonizes the NMDA receptor) AND you have to be somewhere important that day, it's a great thing to have lying around. Only bad thing about these are they are supposedly supposed to lower NK cell function, but my only source for that is the book " Treating cancer with IPT " and they got into this discussion about pain meds being immunosuppresive. I've seen the low dose Naltrexone protocols and it sure won't hurt you, go for it. I would have no clue as to the mechanism as to why this works, recall reading they showed lower levels of the endogenous opioids in PBMC's or some peripheral cell, can't make the link. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 yes i have low natural killer cells ..i started with about 3 mg and now up to about 5 using liquid form but i havent been retested in awhile to see f its still working.... t no promblems with taking it so far > [Original Message] > From: fragiletg <fragiletg@...> > < > > Date: 3/14/2005 10:50:40 AM > Subject: naltrexone > > > > > Has anyone tried low dose Naltrexone to treat CFIDS? > > > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 It gave me an immune system. Without it, I do not have one Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 There are people here that take LDN. I am one of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 What other meds were you taking at the time. What dosage of the naltraxone were you taking? Did you give it a try for 3 months? That's how long it takes to work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 I gave it a brief trial. It severely disrupted my sleep. I had more cognitive problems during the day (possibly from lack of sleep?). It made me depressed which is not one of my typical problems. No noticeable improvement with immune function. -- in AZ Naltrexone Hi all, Judging from the responce to my post, I take it then that - surprisingly - no one here is trying low dose naltrexone? It's supposed to give a night time " double boost " to the immune system which lasts for most of the day and improves some symptoms of CFS. Regards, Lillianna :-) This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 Hi Lillianna, Welcome to the group. It's hard to find anything in the archives because this is such an active group with thousands of messages to wade through. If you haven't already, check out this site and group which has all the up to date info on low dose naltrexone. http://www.low dose naltrexone.org I found the group to be very helpful in answering questions. Not many were taking it for CFS when I was there, many were taking it for Multiple Sclerosis. I did try to backchannel you with information but the message was returned to me so maybe others have had problems contacting you too. Kind regards, Jan Lillianna <lilliannabond@...> wrote:Hi all, Judging from the responce to my post, I take it then that - surprisingly - no one here is trying low dose naltrexone? It's supposed to give a night time " double boost " to the immune system which lasts for most of the day and improves some symptoms of CFS. Regards, Lillianna :-) This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Could you please tell us more? I've never heard of LDN before today, when it was brought up on the I & I list. I have so many questions. Any info would be appreciated. thanks, penny > There are people here that take LDN. I am one of them. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 penny Naltrexone has quite a big following with MS patients. it is taken in very small doses just before bedtime, and it is compounded at a few pharmacies around the country for this purpose. there are two theories about why it would work in MS. the main one is that the small doses at bedtime boosts the bodies production of endorphins during the night, and endorphins have a strong immunomodulatory effect. and with MS stops the body from attacking the nervous system. it also is supposed to boost NK cell activity. the other theory, and there is a DR in Iowa i think that is studying this, is that LDN (low dose naltrexone) protects the brain against oxidative stress and excess nitric oxide production. if you ask this question over at the MS board, i'm sure someone can direct you to the info: http://brain.hastypastry.net/forums/forumdisplay.php?f=181 also there is a board and a board that gives info on the DR that actually pioneered this treatment. http://www.low dose naltrexone.org/ low dose naltrexone/? yguid=103336076 there is lots of info here, but let me know if you have any questions because i have done some studying on this. thanks bill > > There are people here that take LDN. I am one of them. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 here is a link to the DR that thinks LDN is beneficial because it prenvents oxidative stress damage: http://www.bostoncure.org:8080/article.pl? sid=05/01/27/1748256 & mode=nocomment thanks bill > > > There are people here that take LDN. I am one of them. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Bill, thanks, So you've researched this and decided against trying it? If so, how did you come to that decision? I'm mainly interested in the idea that it boosts the immune system. penny > > > > There are people here that take LDN. I am one of them. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2005 Report Share Posted May 30, 2005 penny sorry for the delay in my reply. i am still very interested in LDN, but i am in the process of trying other things at the moment. also, i would have to travel to NYC in order to begin this med, so i am gonna try a couple of other things that i can try from home first. thanks bill > > > > > There are people here that take LDN. I am one of them. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 I've looked up Naltrexone. It would seem to be immunomodulatory if it can both positively affect AIDs and auto-immune illnesses such as MS? Could it therefore be implicated apropos the recent gene findings which show overexpression in genes affecting immune function? Seems to sort of fit in to me. Rosie Subject: Re: Naltexone It gave me back my immune system. I also take provigil. That makes me feel so much more normal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 In a message dated 13/03/2006 16:56:53 GMT Standard Time, moppett1@... writes: I haven't been following the British list so closely on LDN. Is LDN available in the UK?? >>Yep via the Breakspear orginally from College/AMT I think. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 In a message dated 13/03/2006 17:05:37 GMT Standard Time, moppett1@... writes: Do you know whether he will possibly prescribe to a person with multiple sclerosis or is he only convinced about the autism connection? >>> I think they only RX to patients at the Breakspear. You could ring and ask, alternatively they can buy Naltrexone on the Internet and follow directions on gettign right dose from oral and sort it themselves. BS stuff is TD Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Do you know whether he will possibly prescribe to a person with multiple sclerosis or is he only convinced about the autism connection? Re: Naltrexone In a message dated 13/03/2006 16:56:53 GMT Standard Time, moppett1@... writes: I haven't been following the British list so closely on LDN. Is LDN available in the UK?? >>Yep via the Breakspear orginally from College/AMT I think. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2007 Report Share Posted October 5, 2007 This has been around a long time. I know we've had some discussion here about it. I haven't checked the "unofficial" website for many months (www.low dose naltrexone.org) . Lots of claims there not only for HIV but for MS and various cancers. the theory is that a low dose of naltrexone, which binds to the brain's opioid receptors, will suppress them long enough to cause a rebound spike of endorphins and enkephalins, which some research shows are suppressed in HIV and other chronic conditions. Increasing these results in immunomodulatory effects in theory. My own experience didn't convince me it worked. I do have less lipodystrophy than most people in my situation (full blown AIDS, aging white male, very low T cell nadir, several years on Zerit and PIs) but I can't say I noticed a significant change while on the low dose naltrexone. I think the testosterone has made more difference, frankly. I was on naltrexone initially for several months, then stopped since I didn't feel any different. I thought the dose and/or source might be the problem, so I switched to another compounding pharmacy and asked my doctor to up the dose to the higher 3mg. I think I stayed on it for almost a year. Still nothing really noticable. I did have a T cell increase but that might be due to other things. I really don't know what to make of Bihari. He says his patients on naltrexone monotherapy never suffered the decline in T cells before HAART. Now that's pretty amazing. I understand he's got a Harvard medical degree in psychiatry and internal medicine and has a large and very adoring HIV practice (according to a poll several years ago in Poz magazine). I think for a time he was NYC health commissioner. I would have loved to have gone for a consult to get a better idea, but he's got one of those "we don't process insurance" practices in Manhattan and I couldn't afford it. The naltrexone, though, is very cheap, and BC/BS reimbursed me for a part of the compounding cost.I'd love to hear positive anecdotal reports, but I never hear anything about it except on the "unoffical" website. He was trying to get the Rand Corporation to fund a study but last time I checked it hadn't happened. Tonight's top picks. What will you watch tonight? Preview the hottest shows on TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2007 Report Share Posted October 5, 2007 This has been around a long time. I know we've had some discussion here about it. I haven't checked the "unofficial" website for many months (www.low dose naltrexone.org) . Lots of claims there not only for HIV but for MS and various cancers. the theory is that a low dose of naltrexone, which binds to the brain's opioid receptors, will suppress them long enough to cause a rebound spike of endorphins and enkephalins, which some research shows are suppressed in HIV and other chronic conditions. Increasing these results in immunomodulatory effects in theory. My own experience didn't convince me it worked. I do have less lipodystrophy than most people in my situation (full blown AIDS, aging white male, very low T cell nadir, several years on Zerit and PIs) but I can't say I noticed a significant change while on the low dose naltrexone. I think the testosterone has made more difference, frankly. I was on naltrexone initially for several months, then stopped since I didn't feel any different. I thought the dose and/or source might be the problem, so I switched to another compounding pharmacy and asked my doctor to up the dose to the higher 3mg. I think I stayed on it for almost a year. Still nothing really noticable. I did have a T cell increase but that might be due to other things. I really don't know what to make of Bihari. He says his patients on naltrexone monotherapy never suffered the decline in T cells before HAART. Now that's pretty amazing. I understand he's got a Harvard medical degree in psychiatry and internal medicine and has a large and very adoring HIV practice (according to a poll several years ago in Poz magazine). I think for a time he was NYC health commissioner. I would have loved to have gone for a consult to get a better idea, but he's got one of those "we don't process insurance" practices in Manhattan and I couldn't afford it. The naltrexone, though, is very cheap, and BC/BS reimbursed me for a part of the compounding cost.I'd love to hear positive anecdotal reports, but I never hear anything about it except on the "unoffical" website. He was trying to get the Rand Corporation to fund a study but last time I checked it hadn't happened. Tonight's top picks. What will you watch tonight? Preview the hottest shows on TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Hi, After what seems like trying everything possible to tolerate my thyroid meds above a certain dose (vits, minerals, adrenals support, dessicated, etc etc etc) Im back to the idea that really jumped out at me - that hasimoto is an immune disorder primarily and needs to be treated as such. It makes sense to me that there has to be another reason why im stuck and still unwell. It makes sense to my case that immflamation from dirupted immune system (th1 and th2 cells not balance, t cells low, etc) is causing the thyroid cell recepter problems, thus meaning I have trouble tolerating much thryoid meds. Ive been takign moducare which helps balance things and I have had good results with many less virus's - this seems a clue for me. Also going gluten free meant I was able to tolerate 2 1/4 grains of thyroid again after some months of being unable to take any thyroid medication. ANother clue. I think adrenals and vits etc have made a difference but not helped me be any less hypo.And at age 32 ive been primarily housebound for the last 11 years. Not good! Ive read that the main things to do to balance this immune problem is gluthiane, vit d and low dose naltrexone. Im reading some good reports about the LDN in regards to autoimmune conditions! But I know little more about it - do people here take it? Any info/experiences of it? I think for those people who are interested in th1/th2 imbalance this could be worthwhile exploring! Id love some more info or even suggestions of doctors who are experience in this area?? Thanks Carly x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2012 Report Share Posted February 11, 2012 Carly What would be good for you is Dr Datis Kharrazian's Book entitled " Why do I still have Symptoms when my Lab Tests are Normal " . You can buy this from AmazonUK very, very cheaply and it is worth every penny. He explains every aspect of Hashimoto's Disease and what you can do to help yourself and nutrition plays a very big part. Check him out here http://www.thyroidbook.com/ Luv - Sheila Ive read that the main things to do to balance this immune problem is gluthiane, vit d and low dose naltrexone. Im reading some good reports about the LDN in regards to autoimmune conditions! But I know little more about it - do people here take it? Any info/experiences of it? I think for those people who are interested in th1/th2 imbalance this could be worthwhile exploring! Id love some more info or even suggestions of doctors who are experience in this area?? Thanks Carly x No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.1913 / Virus Database: 2112/4800 - Release Date: 02/09/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2012 Report Share Posted February 12, 2012 Thanks Shelia, I have this book already. Im just trying to decide what to actually 'do' in relation to it. I do a lot of it anyway but need to go further. And this LDN keep coming up and there are some good reports on it? Do you happen to know any UK docs who are working along this 'immune' approach? Thanks Carly > > Carly > > What would be good for you is Dr Datis Kharrazian's Book entitled " Why do I > still have Symptoms when my Lab Tests are Normal " . You can buy this from > AmazonUK very, very cheaply and it is worth every penny. He explains every > aspect of Hashimoto's Disease and what you can do to help yourself and > nutrition plays a very big part. Check him out here > <http://www.thyroidbook.com/> http://www.thyroidbook.com/ > > Luv - Sheila > > > > > > > > > > > > _____ > > No virus found in this message. > Checked by AVG - www.avg.com > Version: 2012.0.1913 / Virus Database: 2112/4800 - Release Date: 02/09/12 > Quote Link to comment Share on other sites More sharing options...
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