tag:blogger.com,1999:blog-22576999.post5213459469477668561..comments2024-03-28T17:38:39.157-04:00Comments on Live With ME/CFS: Low-Dose Naltrexone Treatment for CFSSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-22576999.post-91819676227448925532016-07-27T09:37:08.588-04:002016-07-27T09:37:08.588-04:00Yes, we both still take it - 8 years now - and it ...Yes, we both still take it - 8 years now - and it still helps. Here is my most recent update on LDN (and note that you can always use the "search this blog" function in the left sidebar to find posts on cartain subjects, like LDN):<br /><br />http://livewithcfs.blogspot.com/2014/08/low-dose-naltrexone-update-and-dosing.html<br /><br />Are you taking antivirals for the reactivated EBV? That can help a lot. There is a good ME/CFS doctor in Dallas - e-mail me if you want his contact info (click on View My Complete Profile in the left sidebar under About Me).<br /><br />Good luck! I hope the LDN helps you!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-43103392591998625382016-07-26T22:09:10.933-04:002016-07-26T22:09:10.933-04:00Hello, I am reading about LDN and getting to the p...Hello, I am reading about LDN and getting to the point I want to give it a try. I have been diagnosed with EBV and Hashimoto's. I started this year 2016, with extreme fatigue, body aches, inflammation, swelling and more. I am using all supplements prescribed by a functional doctor I found here in DFW Texas. I would like to know how your and your son are doing up to today. Thanks. Marfillahttps://www.blogger.com/profile/10491266487992537887noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-85582110885166624852016-07-26T21:55:09.253-04:002016-07-26T21:55:09.253-04:00Hello, I would like to know if you continued with ...Hello, I would like to know if you continued with LDN and your improvement continued? Thanks. Marfillahttps://www.blogger.com/profile/10491266487992537887noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-27327678572858205682013-08-04T12:20:13.852-04:002013-08-04T12:20:13.852-04:00Oh my god,I think this is what I have! I have been...Oh my god,I think this is what I have! I have been feeling pretty desperate of late due to years of cfs/me & long periods spent with the inability to feel enjoyment or pleasure from anything,but not feeling down or sad as in 'normal' depression.I actually jump for joy when I do feel sad as this is a welcome break from this endless monotony of boooooooooooooooredom! Do you recommend LDN then Tom? HelenHelenhttps://www.blogger.com/profile/02063804589833140348noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-30879302632270180782012-08-29T21:36:44.135-04:002012-08-29T21:36:44.135-04:00Pris -
Click on the link in this post for the low...Pris -<br /><br />Click on the link in this post for the lowdosenaltrexone.org website and read it thoroughly - it talks about the timing of the dose. There are reasons to take it before bedtime, having to do with the hormonal cycles in our brains - the idea, if I recall correctly, is for it to hit its maximum dose in the brain just after midnight - 2 am or so. That is supposed to be how it is most effective.<br /><br />Some people say it causes vivid dreams (I've had that since getting CFS!) but that effect fades after about a week. I had no negative effects at all and felt immediately better the very next day. People with CFS who are sensitive to meds should start out very low - maybe even 0.5 mg or 1 mg - but try the before-bed dosing for the reasons explained on that website. Give it 2 weeks and see what happens. Then you can gradually increase the dose, if you tolerate it well.<br /><br />Good luck and let me know how it goes - this is one of the few things that has helped me a lot, so i hope it helps you, too!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-55728345385522645542012-08-29T19:36:19.399-04:002012-08-29T19:36:19.399-04:00Sue,
My doctor down at the Klimas clinic just rec...Sue, <br />My doctor down at the Klimas clinic just recommended this but only said one a day of the lowest dose, not the time. Many sites say nighttime but I don't do well with meds at night if they affect my sleep. It takes me half the day to get out of the drugged feeling. I have trouble with meds, so am nervous about this...major trouble..so am thinking about taking the first one or maybe the first few in the morning so I can watch its effects on me. IF I can handle it I'd like to keep it there to see if it works. Any feedback from anyone on this timing since your post?Prishttps://www.blogger.com/profile/03970753027686923295noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-53189449719895562452012-07-14T20:51:22.979-04:002012-07-14T20:51:22.979-04:00Hi, Courtney -
Yes, it sounds like your dose is ...Hi, Courtney - <br /><br />Yes, it sounds like your dose is just too high. 4.5 mg is a high dose, especially for someone with CFS or FM as many of us are sensitive to meds.<br /><br />For treatment of autoimmune disorders, the experts say 4.5 mg is the "optimum dose" but for many of us, that is too high.<br /><br />Yes, I still take LDN, 3 mg. I tried going up to 4.5 mg but felt worse for the entire 10 days - I went back down to 3 mg and immediately felt better again.<br /><br />Many people with CFS or FM start VERY low, at just 1 mg or so and go up very gradually, as tolerated. I know one woman who found the best dose for her was only 2.5 mg. So, I suggest trying a lower dose. Since you responded well at first, then you are probably close - try 3 mg.<br /><br />Good luck!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-39541200099031314822012-07-14T19:17:22.613-04:002012-07-14T19:17:22.613-04:00I just finished my 3rd week being on LDN for fibro...I just finished my 3rd week being on LDN for fibro. The first week and a half I felt great!! The second week and a half not so great!! Actually I feel terrible. I am currently taking 4.5mg. Do you have any suggestions?Courtney Sokoliknoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-78421936428295805552011-05-22T15:58:25.736-04:002011-05-22T15:58:25.736-04:00Hi I stared on LDN 2 months ago, I have been fight...Hi I stared on LDN 2 months ago, I have been fighting fibro/cfs for 3 decades and 15 yrs of unDX thyroid. I felt the inflammation in my cfs damages knees get better first, then my fatique. I am so blessed to have found LDN, I mix it up myself from Nordic I buy from United Pharmacies on line. Easy to mix up find how online. I hope I continue to get better and better cheers.presouzhttps://www.blogger.com/profile/08869204594211908958noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-77128603518044178752010-12-08T19:22:05.167-05:002010-12-08T19:22:05.167-05:00Hi Sue
SO happy to see you got relief on LDN, my ...Hi Sue<br /><br />SO happy to see you got relief on LDN, my Dr was not as nice as yours when I did research on LDN and took it to him he say Im his only patient with CFS and he has no desire to learn more about it. Im so upset. I am going to buy some Naltrexone from the internet and compound my own, a few fibro/cfs patients on the website I belong to use it with great success and some do compound their own. ONLY Thing is I hope its really Naltrexone Im getting!! UGH! GOD BLESS you for puttin out your trials of the LDN..Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-44343743133495066562010-04-13T16:26:57.365-04:002010-04-13T16:26:57.365-04:00Hi -
You've found one of my earlier posts fr...Hi - <br /><br />You've found one of my earlier posts from a couple of years ago. Here is a more recent update on LDN:<br /><br />http://livewithcfs.blogspot.com/2010/02/update-on-my-low-dose-naltrexone.html<br /><br />Yes, if it works for you, it helps with all of those symptoms. For me, it just makes all of my CFS symptoms better, and I have more good days and fewer bad days.<br /><br />Hope that helps - <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-16452491638723303302010-04-13T12:31:37.054-04:002010-04-13T12:31:37.054-04:00hi, i would love to know HOW LDN helps with what s...hi, i would love to know HOW LDN helps with what symptoms of CFS/ME since i just don't need energy, i don't want to FEEL that deathly ill, weak, exhausted feeling everyday. that feeling that all you can do is lie in bed breathing. does LDN help with THESE? thank youAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-16883724328051082762009-06-22T02:15:47.343-04:002009-06-22T02:15:47.343-04:00I have been dealing with CFS for over 20 years. I ...I have been dealing with CFS for over 20 years. I have learnt that my version of CFS is in fact adrenal fatigue that has dragged the kidneys down with it. Stress and EBV did this.These organs play a huge role in the energy cycle.<br /><br />Im taking herbs to help them,but Im going to try LDN and see if it helps.<br /><br />Ribose is an amasing nutrient. I have been using this and its amasing the energy it will give you. I couldnt believe how good i felt.<br /><br />It was like I was before i got this monster of a thing called CFS. But,unless you address the adrenals/kidneys,the energy you get from ribose will not last long...about 4 weeks as it puts stress on the adrenals/kidneys.<br /><br />But those 4 weeks were like feeling like an olympic athlete !..well compared to having CFS.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-38953699161418355492008-04-24T12:38:00.000-04:002008-04-24T12:38:00.000-04:00Hi, Diane - Yes, it's fine with em if you link to ...Hi, Diane - <BR/><BR/>Yes, it's fine with em if you link to my post on LDN. Sorry for not replying sooner- <BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-81789566482325922972008-04-14T13:47:00.000-04:002008-04-14T13:47:00.000-04:00I'm going to link to your post, if that's ok. If n...I'm going to link to your post, if that's ok. If not (and why not?! LOL) let me know.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-40661825239132107132008-04-13T21:57:00.000-04:002008-04-13T21:57:00.000-04:00Hi Sue, I am checking in to see how you are doing....Hi Sue, I am checking in to see how you are doing. I may be starting the Valcyte in the next months or so and wanted to pop on you. I have also joined blogge, have a Mac, and can now subscribe to your blog via RSS. :-)<BR/><BR/>You talking about LDN is a funny coincidence, I just met somebody on Daily Strength with MS who suggested it to me for CFIDs/Fibro. I thought it was just another questionable therapy like Guaifenesin(sp? ) or the Marshall Protocol...but it sounds like it has helped you.<BR/><BR/>Now I a wondering if I shouldn't try it first, it sounds more affordable and less likely to cause a Herx effect than the Valcyte.<BR/><BR/>Anyways, thank you for keeping this blog and providing all this helpful info with links to real sound research and results. It's hard to find reputable info in regards to treatments on the internet.<BR/><BR/>Big hugs to you and your family<BR/><BR/>~shellShellhttps://www.blogger.com/profile/00684771327259214924noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-55576826250629533462008-04-07T18:19:00.000-04:002008-04-07T18:19:00.000-04:00Hi, Sherry - Yes, I am still on anti-virals, too (...Hi, Sherry - <BR/><BR/>Yes, I am still on anti-virals, too (1000 mg Valtrex daily). From what I understand, the two therapies are complementary (though you could try either on its own). I also read that Olive Leaf helps naltrexone work better - interesting, since I take olive leaf every day.<BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-59173503241335581962008-04-05T18:21:00.000-04:002008-04-05T18:21:00.000-04:00Sue,Just wondering if you still take the anti-vira...Sue,<BR/>Just wondering if you still take the anti-viral, too, and this is a recent add-on to that treatment.Sherryhttps://www.blogger.com/profile/11034488498196936495noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-56119097999101236162008-04-05T18:04:00.000-04:002008-04-05T18:04:00.000-04:00I'm going to check into this. Thanks for the repor...I'm going to check into this. Thanks for the report!Sherryhttps://www.blogger.com/profile/11034488498196936495noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-51810708519652640902008-04-05T08:33:00.000-04:002008-04-05T08:33:00.000-04:00Congrats on your success, and welcome to the LDN f...Congrats on your success, and welcome to the LDN family, Sue. LDN is gaining more and more momentum thanks to bloggers like yourself. Three years ago there were only a handful of sites that reference LDN, and now there are literally thousands. If you spent a weekend digging around for LDN on Google, you'll find some outstanding success stories -- mostly from MS patients right now (because that condition affects so many people), but a few from Crohn's patients, Lupus patients, patients of some types of cancers, AIDS patients and -- lucky for me -- EDS patients (EDS = Endorphin Deficiency Syndrome). If you're interested in finding out more about how and why LDN works, look up some of the EDS stories related to LDN. While the other conditions I just mentioned are the result of one's immune system attacking a particular body system, such as the digestive system for Crohn's -- EDS has to do with the brain, which is where LDN does its magic. So if you read up on EDS, you'll find a community of very smart people that have done incredible amounts of research on LDN, brain chemicals & processes, depression, treatments, meds and other related topics. EDS is a terrible, cruel affliction; and because it's so understudied, MANY people have it and don't even know it. <BR/><BR/>To give you a fundamental explanation of what EDS is/does: while some types of "depression" (which is a horribly generalized term for a host of brain-related conditions) can be treated with dozens of different SSRI meds, the brain chemicals that SSRIs affect (serotonin, dopamine, norepinephrine) are not the only chemicals in the brain. And so if you are deficient in a chemical that SSRIs do not address, then the "depression" continues because the SSRIs don't do anything for you. Some of the chemicals that people can be deficient in that SSRIs/SNRIs do not affect are the brain's endogenous opioids -- aka "endorphins." Unfortunately, this condition is not recognized yet by the traditional medical organizations. But the fact that LDN works on EDS patients is proof that it's real. So the more we can get the word out about LDN's effectiveness -- even if it's with people that have other conditions -- the more exposure and popularity LDN will get, and the more attention the medical groups will have to start giving to it.<BR/><BR/>If you'd like to read more, there's a great blog that explains EDS in layman's terms. When you start reading it, you might even begin to realize that your Chronic Fatigue Syndrome is not your main problem, and that you actually have EDS. That's what happened to me. I've had Crohn's for 11 years, and when I started reading about EDS, I realized that Crohn's was not my "core problem" - it was a side effect of a much greater problem: endorphin deficiency. And when I started treating the endorphin deficiency, the Crohn's was cured. (I wish I could bold and underline that last part to draw emphasis.) It's the same thing with the people with MS that are taking LDN. They are not treating the MS, they are treating their bodies' deficiency in endorphins, which directly affect the immune system, thus curing the MS. It's quite fascinating. If you read enough about LDN, and the success stories, you'll quickly come to realize that it's only a matter of time before the media catches on, and this becomes a huge "breakthrough" (which we already know is.) In fact, it's just now starting to hit TV news -- if you go to the LDN site that you mentioned in your blog and play the video from WTEV Channel 47 in Jacksonville, FL -- you'll see the report. The title: "WONDER DRUG". Very fitting indeed.<BR/><BR/>Anyway, here's the EDS blog I mentioned:<BR/>http://prohibitionkills.blogspot.com/<BR/><BR/>Good luck with the CFS and LDN. Be well.<BR/><BR/>-TomAnonymousnoreply@blogger.com