Guest guest Posted March 30, 1999 Report Share Posted March 30, 1999 >Can you please tell me what improvements you have seen since starting on >Naltrexone? I think I will try it as well. Now I just have to find a >doctor who will prescribe it. Wish me luck. JL JL THis is a difficult question to answer because in my desperation to " get better " and knowing that naltrexone is a slow acting thing and needs months to " do its thing " , and also believing that maybe I need to attack my CFS in a number of different ways at the same time - I have been using several approaches at the same time. However, since trying this number of things (including naltrexone, lemon and olive oil drink, transfer factor, glucosamine and chondroitin sulphate, Q10 and my usual vitamins and minerals), I have become more " robust " - I can exercise much more without feeling sick or without getting an infection, I feel generally more " normal " . Also my arthritis has reduced enormously - this is probably due to the glucosamine and chondroitin alone. I should add that I have also had more mild symptoms like a cold and sore throats which are different from my usual sore throat. I interpret these positively as being a return to my condition before CFS, but that may not be true. I also had an attack of a " virus " which caused me acute pain in the nerves or veins - my doc is not sure which - and since which I have had lots of numbness problems mostly down one side. This might be good news or very bad news I am not sure which. Assuming the numbness doesn't get worse I am generally about 1000% better than I was, and much happier and more productive. My allergies may be better, my skin itch which is either allergy or liver dysfunction is the same. I think the olive oil is important. ANd yes, good luck on getting the Naltrexone - it took me 6 months, now it is easy. The thing you have in your advantage in asking for it is that you don't need more than a couple of pills at a time, and this relieves doctors of the worry that it may be unsafe for you , or you may be trying to abuse it. I go along to my Naltrexone doctor (yes I have a special one!) and he pulls out a few from his bag and gives them to me in return for some cash. 6 tablets last me for 6 x 16 = 96 days .... 3 months. JR n Tel/Fax +61-2-6239 6226 Canberra, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 I am taking Naltrexone also > >Can you please tell me what improvements you have seen since starting on > >Naltrexone? I think I will try it as well. Now I just have to find a > >doctor who will prescribe it. Wish me luck. JL If you can't find a doc to perscribe it and you really want to try it, you can do a telephone consult with Dr. Bihari of New York (if you live in the US). You could also buy Mark Konlee's book (http://www.execpc.com/~keephope/khaads.html), highlight the parts about naltrexone and show it to your doctor (or hightlight portions of Mark's newsletters (http://www.execpc.com/~keephope/) for your doc. > THis is a difficult question to answer because in my desperation to " get > better " and knowing that naltrexone is a slow acting thing and needs months > to " do its thing " , and also believing that maybe I need to attack my CFS in > a number of different ways at the same time - I have been using several > approaches at the same time. This is true for me also. Because Naltrexone hasn't made a huge difference for me I didn't notice how much it was helping until I forgot to renew my perscription and had to go without it for 10 days. I went *SOOO* far downhill for those 10 days! I couldn't sleep the entire 10 days, my CMI (cell-mediated immunity) went way down (I measure my CMI every week or every other week) and I got so depressed I was almost suicidal. Everything went back to " my normal " after 2 days back on Naltrexone. From this experience I think I can say that Naltrexone has raised my CMI (not as much as I'd like, but definitely better than before, which was unmeasureable), helps me go to sleep and sleep deeper and feel more refreshed when I awake and elevates my mood somewhat. Without objective measures I would estimate that Naltrexone is responsible for at least 20% improvement. It has had a more definite effect on me than virtually anything else I've taken other than Armour thyroid. For me its not a silver bullet tho - I'm still disabled and unable to work more than 15 hrs/week. Without it I think I wouldn't be able to work at all. > Assuming the numbness doesn't get worse I am generally about 1000% better > than I was, and much happier and more productive. Naltrexone increases endorphin production, which makes you " happier " . Endorphins, in turn, will increase CMI. > I go along to my Naltrexone doctor (yes I have a special one!) and he > pulls out a few from his bag and gives them to me in return for some cash. > 6 tablets last me for 6 x 16 = 96 days .... 3 months. I'm curious, how do you split the pills up? (my perscription is for 3mg pills) Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 Can someone tell me what Naltrexone is and how it helps CFIDS? Thanks. _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 > Can someone tell me what Naltrexone is and how it > helps CFIDS? Briefly: Naltrexone increases b-endorphin -> b-endorphin increases CMI and mood. -> Strong CMI kills candida, hhv-6, cancer, etc. More info at: http://www.execpc.com/~keephope/ Patti -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 > judith and others. the stuff on keep hope is pretty deep, i > decided it was worth the paper and printer to print out, or > at least save on disk, so you can look at without connection. > or, god forbid, if it goes off the web, i will have it. Back in August I printed out 6 of the latest newsletters. They were *WAY* to info dense for me to read and comprehend while reading on a computer screen. I can only take in info like this if I have a hard copy and I can highlight and take notes. I put them all in a notebook and made notes in the margins. Then I collected all the phone numbers etc that I wanted to follow up on (like getting the ATP/glutathione protocol from Dr. Salvato). It took me weeks to make all the phone calls to get the more detailed info that I wanted. I also printed out copies for my doc to read (prehighlighted so I could draw his attention to the areas I was interested in - he has requested me to highlight articles before I bring them in). I studied them like I was going to take a test on them. I found that trying to understand the immune system was very frustrating and I had to reread the stuff many times to get a handle on it. I also did internet searches to learn more about the immune system. I did medline searches on things I wanted more info on, like naltrexone and DNCB. > issue 10 has a big interview on naltrexone on pages > 2 - 6 including a big interview with dr. bihari. I had a telephone consult with Dr. Bihari so I could get a perscription for Naltrexone. Now I can get it from my regular doc. > lots of issues have bits and pieces on naltrexone. A quick way to scan a document is to bring it up in your browser and do a " find " for the word you're looking for (like naltrexone) and your browser will jump to, and highlight occurences of the word. > I HAD READ AND REREAD THIS STUFF. EACH TIME I LEARN MORE > FROM MARK, AS I HAVE READ MORE RESEARCH. In his last newsletter (#18) he summarized the results of reading 600 abstracts. I don't know about you all, but I don't have the time to read through 600 abstracts every couple months. Patti -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 thanks for the information on naltrexone. Unfortunately my brain is unable to digest all this interesting information. When I feel better I will read it in detail. But for now I have just a few questions. Is nalreoxne a prescription medication or something one can get at a health food store? In a " nutshell " what does it do? Thanks Steve > naltrexone > > > From: " G. McFadden " <nmcfadden@...> > > judith and others. the stuff on keep hope is pretty deep, i > decided it was worth the paper and printer to print out, or > at least save on disk, so you can look at without connection. > or, god forbid, if it goes off the web, i will have it. > nancyM > > anyhow, I LOOKED AT MY PRINTED COPIES, AND HERE GOES: > > issue 15 has short info on naltrexone on page 36 > > http://www.execpc.com/~kee > > > > > > > > phope/report15.html > > issue 10 has a big interview on naltrexone on pages > 2 - 6 including a big interview with dr. bihari. > > http://www.execpc.com/~keephope/report10.html > > lots of issues have bits and pieces on naltrexone. > > also, phone messages for 1998, page 24, april voice > mail has more on how naltrexone helps things. > > http://www.execpc.com/~keephope/v1998.html > > I HAD READ AND REREAD THIS STUFF. EACH TIME I LEARN MORE > FROM MARK, AS I HAVE READ MORE RESEARCH. NO ONE IS PERFECT, > BUT FOR A PATIENT ACTIVIST, MARK IS DARN GOOD. > > thanks, nancy mcfadden > > ------------------------------------------------------------------------ > ONElist: the best source for group communications. > > Join today! > ------------------------------------------------------------------------ > 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 5, 1999 Report Share Posted May 5, 1999 Can you tell me how naltrexone is helping you? What symptoms does it resolve? thanks Steve > Re: naltrexone > > From: pskari@... > > > > judith and others. the stuff on keep hope is pretty deep, i > > decided it was worth the paper and printer to print out, or > > at least save on disk, so you can look at without connection. > > or, god forbid, if it goes off the web, i will have it. > > Back in August I printed out 6 of the latest newsletters. > They were *WAY* to info dense for me to read and > comprehend while reading on a computer screen. > I can only take in info like this if I have a hard > copy and I can highlight and take notes. I put them > all in a notebook and made notes in the margins. Then > I collected all the phone numbers etc that I wanted to > follow up on (like getting the ATP/glutathione protocol > from Dr. Salvato). It took me weeks to make all the > phone calls to get the more detailed info that I wanted. > I also printed out copies for my doc to read (prehighlighted > so I could draw his attention to the areas I was interested > in - he has requested me to highlight articles before I > bring them in). I studied them like I was going to take > a test on them. I found that trying to understand the > immune system was very frustrating and I had to reread the > stuff many times to get a handle on it. > > I also did internet searches to learn more about the immune > system. I did medline searches on things I wanted more > info on, like naltrexone and DNCB. > > > issue 10 has a big interview on naltrexone on pages > > 2 - 6 including a big interview with dr. bihari. > > I had a telephone consult with Dr. Bihari so I could > get a perscription for Naltrexone. Now I can get it > from my regular doc. > > > lots of issues have bits and pieces on naltrexone. > > A quick way to scan a document is to bring it up in > your browser and do a " find " for the word you're > looking for (like naltrexone) and your browser will > jump to, and highlight occurences of the word. > > > I HAD READ AND REREAD THIS STUFF. EACH TIME I LEARN MORE > > FROM MARK, AS I HAVE READ MORE RESEARCH. > > In his last newsletter (#18) he summarized the results > of reading 600 abstracts. I don't know about you all, > but I don't have the time to read through 600 abstracts > every couple months. > > Patti > -- > > ------------------------------------------------------------------------ > Want to learn more about your list users? > > Now you can with our new User Survey Tool - see homepage for details > ------------------------------------------------------------------------ > 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 17, 1999 Report Share Posted May 17, 1999 Hi n, I was wondering what kind of NK cell test you had. I had an NK test which measured the function in " lytic units " & the normal range is 20-250. Mine were at 13. Tested at Specialty Labs in LA. Also, what kind of side effects did you have with the Naltrexone and is it covered by HMO's? Steve in Northern California <>< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 1999 Report Share Posted May 18, 1999 Actually I think Naltrexone is the one treatment that would require absolutely no courage! - it is a very small amount of a relatively safe drug with not much likelihood of doing strange things, even to PWCs. Remember we are only taking 1/16th of the dose prescribed for its normal use. Of course I am biassed and no medico, but from my experience it is the best single thing I have found, and not expensive and not apparently dangerous. And I agree - I hope others do try it - there doesn't seem to be much to lose. Sue - Forgive me for being flaky, but are you another person who HAS tried it already? JR Sue wrote: >That's very exciting news about your Naltrexone experience! Maybe it will >give some others the courage to try. n Tel/Fax +61-2-6239 6226 Canberra, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 1999 Report Share Posted May 18, 1999 > Actually I think Naltrexone is the one treatment that would require > absolutely no courage! - it is a very small amount of a relatively safe > drug with not much likelihood of doing strange things, even to PWCs. > Remember we are only taking 1/16th of the dose prescribed for its normal > use. Of course I am biassed and no medico, but from my experience it is > the best single thing I have found, and not expensive and not apparently > dangerous. Agreed. I have been taking Naltrexone since October last year. n and I are the only PWCs I know of who are taking Naltrexone. There are lots of PWAs taking it for the same reason n and I take it (improve sleep and boost CMI - boosts mood in many also). Dr Bihari prescribes 3mg (~1/16 of the " normal " use dose) to all his PWAs and PWCs and none of his patients have reported any adverse reaction. It will not have much, if any, beneficial effect for those taking narcotics (no bad reaction, just no good reaction either). > And I agree - I hope others do try it - there doesn't seem to be much to lose. !! Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 1999 Report Share Posted November 3, 1999 Nelly, 3mg/day Naltrexone has done nothing for me, good or bad, maybe helps with sleep a bit. It won't hurt you so it's worth a try though. Have you considered trying an anti-convulsant like Neurontin (Gabapentin) or Depakote for your neurological symptoms? Some people are helped enormously by these. Regards, . PS. (off topic) Congrats on France's semi-final win over the All Blacks in the rugby world cup. Australia look like a pretty daunting challenge in the finals though. Naltrexone > n, (and others with experience with naltrexone?) > Are you still taking naltrexone? with what results? > Since I came down with the dreadful vertigo attack 2 months ago (circa > Belgian Conf time), I have been having a bad time with vibrating in head, > back of head and neck incredibly tense and painful, blurred eyesight etc. > I " think " that all these symptoms are bit improved the day AFTER I have > taken codeine. Has anyone else experienced such an effect? And would anyone > have any idea why codeine might make me feel better the day after? > > I know naltrexone has been used (by AIDS patients for eg) to try and boost > their immune syst, but do you think it could also have a similar effect as > codeine on the neurological type symptoms mentioned above? Just a shot in > the dark, but since I have the naltrexone in my drawer! > > I know we've talked about this before, but just in case... > > Nelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Nelly, Sorry about the late reply I have been off air. a) One victim of acute pesticide poisoning I shared a ward with in investigative hospital got what she called " the tractors " which was irregular bouts of vibrating of parts or all of her body. Over the next year they just slowly went away. Don't know about other symptoms, but they sound awful. AFAIK naltrexone and codeine are opposites? I am not sure about codeine, but guess it is an opiate? Naltrexone is an opiate ANTAGONIST. It is also used at such different doses from the use of codeine etc that I assume it is working via different pathways. I know that when on normal doses of naltrexone you have to carry an emergency card that warns carers that you may not respond to standard painkillers because the naltrexone blocks their effects. The naltresone is also supposed to work over the long term. Maybe codeine makes you better the day after because of a rebound effect - get naltresone like blocking the next day??? Personally as you know I am a fan of the stuff. It " calmed me down " in more ways than one so may well have a positive effect in your case. I am resonably sure that at such low doses it could not hurt to try it. Remember - 3 mg a day at night = 1/16th tablet. I have not read the rest of this list yet so may find this answer is irrelevant. Best wishes - JR At 00:42 04/11/99 , you wrote: >n, (and others with experience with naltrexone?) >Are you still taking naltrexone? with what results? >Since I came down with the dreadful vertigo attack 2 months ago (circa >Belgian Conf time), I have been having a bad time with vibrating in head, >back of head and neck incredibly tense and painful, blurred eyesight etc. >I " think " that all these symptoms are bit improved the day AFTER I have >taken codeine. Has anyone else experienced such an effect? And would anyone >have any idea why codeine might make me feel better the day after? > > I know naltrexone has been used (by AIDS patients for eg) to try and boost >their immune syst, but do you think it could also have a similar effect as >codeine on the neurological type symptoms mentioned above? Just a shot in >the dark, but since I have the naltrexone in my drawer! > >I know we've talked about this before, but just in case... > >Nelly > >>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. n Tel/Fax +61-2-6239 6226 Canberra, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Hi, Got mine from ApotheCure, Dallas Texas 1-972-960-6601 with prescription for 3 mg. SR capsules. Best, Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 In a message dated 5/22/01 9:56:37 PM Eastern Daylight Time, moores@... writes: > So I will let > After reading your statistics on Valcyte, it actually seems less promising than a non-prescription thing like TF (specifically, the TF for CMV from that one company I posted). Maybe try them both at the same time. Why not? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 None Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 hi been on low dose naltrexone for almost a year but its at 3.0 mg not the 4.5 mg mentioned on the website. I have had no special tests prior to starting it and no special tests since being on it.This has been a rough year due to allergies and my viral loads are up so i have no idea if its useless at this level or in general or i might have been worse. I am taking it on faith alone. At times i think if my allergeries werent so bad and i discounted them, my energy level might be a tiny bit higher but its still overall fairly low. since its prescrption , my insurance pays for part of it . good luck somish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 a, A few of us have tried it and written about it here, altho to be honest I can't remember the others. My experience was positive in terms of my immune numbers - I wrote it up (complete with graphs!) at http://members.austarmetro.com.au/~julian/cfs/naltrexone.htm I hope you are monitoring your immune numbers, at least T cells and NK. It would be even more interesting if you could get cell FUNCTION tests done (I couldn't here in Australia). Please let us know how you go, but be aware that it is a long-ish term project. n > Has anyone tried this drug called Naltrexone for boosting the immune >system. I started it on Monday and I'm curious to see how others have >responded. If you want information regarding this drug check out this web >site <A HREF= " www.low dose naltrexone.org " >www.low dose naltrexone.org</A> >Thanks, >a 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 March 8, 2003 Report Share Posted March 8, 2003 a, I have been taking 4.5 milligrams naltrexone were the past five or six months. This is the first winter season in 13 years that I have had no flu or cold, so it must be helping my previously very low natural killer cell function. Steve Du Pre Webpage: http://www.angelfire.com/jazz/isaiah40soaringeagle/index.html " By words the mind is winged. " Aristophanes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Hi n, Rich and anyone else that has taken Naltrexone. My sister in another state has cancer and have given her literature on Naltrexone because a Natural Dr. where I live said that Naltrexone was the best thing that he had for cancer. It is an immune modular and is for any immune problems. I have tried taking it but it makes my migraines worse. My sister does not have migraines. Someone on this list had favorable things to say about it. My question is. has anyone had or heard of any unfavorable side effects from it? Thanks, H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Rich, thanks for responding. I didn't mention it but was referring to low-dose 4.5 mg. Naltrexone. Regards, H. > I don't have any personal experience with naltrexone. Mosby's > Medical Drug Reference (2001-2002), p. 689 gives quite a long list > of side effects and adverse reactions that have been observed with > naltrexone. One that is in bold print is hepatotoxicity, and they > recommend monitoring for liver damage with liver function tests. > > I think n has discussed using low-dose naltrexone for CFS, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 , I don't have any personal experience with naltrexone. Mosby's Medical Drug Reference (2001-2002), p. 689 gives quite a long list of side effects and adverse reactions that have been observed with naltrexone. One that is in bold print is hepatotoxicity, and they recommend monitoring for liver damage with liver function tests. I think n has discussed using low-dose naltrexone for CFS, and perhaps the side effects are less of an issue in this case, but as I say, I have no personal experience with it. Also, please note that I am not licensed to either prescribe pharmaceuticals or to recommend against taking those that have been prescribed by a licensed physician. I recommend that you check with your doctor about this. Rich > Hi n, Rich and anyone else that has taken Naltrexone. > > My sister in another state has cancer and have given her literature on > Naltrexone because a Natural Dr. where I live said that Naltrexone was the > best thing that he had for cancer. It is an immune modular and is for any > immune problems. I have tried taking it but it makes my migraines worse. My > sister does not have migraines. Someone on this list had favorable things to > say about it. > > My question is. has anyone had or heard of any unfavorable side effects from > it? > Thanks, H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 - for myself, no side effects apart from sleeping better. So I am a " favourable sayer " about Low Dose Naltrexone. In my own n=1 trial, while it is possible that there was a coincidence between two different things, the FACT is that my immune numbers improved markedly from the time I started taking LDN for a couple of years. That is, there was a dramatic change in the direction of these numbers from falling to steeply rising as measured over some 10 or 15 sets of tests over several years. I guess you have looked at the LDN site, it is a pity there is not more research or info on this topic, nothing seems to have changed over the last few years, and no new info. Putting <<< " low dose naltrexone " cancer >>> into Google brings up 55 hits, but most of these seem derivative of Bihari's work. from http://www.mbschachter.com/protocol_for_low.htm " Although there are no known significant side effects to the treatment, in about 1 out of 50 patients, the patient will experience a sleep disturbance. In this case, Dr. Bihari recommends that the pharmacy make up a 100-ml. solution containing naltrexone in distilled water at a concentration of 1 mg/ml. The patient is told to take 1 to 1 ½ ml. at bedtime—possibly working up to 2 ml. or 2 mg. According to Bihari, a significant minority of cancer patients obtain a positive response to the treatment. A summary of his results, as well as additional information may be found on his website at http://low dose naltrexone.org. He reports improvement as early as within a month and remission frequently occurs within 6 months. Some of his patients have been on the program for more than seven years. " http://www.low dose naltrexone.org/ http://members.austarmetro.com.au/~julian/cfs/naltrexone.htm http://www.geocities.com/~vera_b/alts/naltrexone.html n At 04:34 02/04/03, you wrote: >Hi n, Rich and anyone else that has taken Naltrexone. > >My sister in another state has cancer and have given her literature on >Naltrexone because a Natural Dr. where I live said that Naltrexone was the >best thing that he had for cancer. It is an immune modular and is for any >immune problems. I have tried taking it but it makes my migraines worse. My >sister does not have migraines. Someone on this list had favorable things to >say about it. > >My question is. has anyone had or heard of any unfavorable side effects from >it? >Thanks, H. > > >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 April 2, 2003 Report Share Posted April 2, 2003 No Liver problems from it here. And I had elevated liver enzymes for years from this illness. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Naltraone is DR. Bihari's " baby " . and he is considered a renegade. The naltraxone did not make my migrines worse. I take depacoat for the migraines and it does prevent them. I have to take 2 or 3 though. 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 hi am on low dose naltrexone but only 3.0 mg and my liver enzymes are normal and years ago elevated . soimish Quote Link to comment Share on other sites More sharing options...
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