tag:blogger.com,1999:blog-22576999.post8085948904977211678..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: Treating ME/CFS With ImunovirSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger43125tag:blogger.com,1999:blog-22576999.post-65016806667545683672019-02-14T12:14:28.569-05:002019-02-14T12:14:28.569-05:00Wonderful to hear you are going to try inosine! He...Wonderful to hear you are going to try inosine! Here's a more up-to-date blog post for guidance - the dosing is tricky, so this post explains that. Also, we quit buying prescription Imunovir many years ago - much too expensive & hard to get here in the US. Instead we just buy inosine sold as a supplement - works the same way 7 MUCH cheaper and easier to get! That's all in this post, too: <br /><br />http://livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html<br /><br />As for testing NK Cell function, it's a very basic test that any lab can run - I'm surprised your dcotor's never heard of it. Here's info from Quest Labs on their NK test:<br /><br />http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=34184&labCode=SEA<br /><br />Hope that helps! good luck and please let me know how it goes for you & if you have any questions :)<br /><br />Sue<br /><br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-36776695293606403192019-02-13T12:43:27.704-05:002019-02-13T12:43:27.704-05:00Excited to soon start your recommended protocol fo...Excited to soon start your recommended protocol for immune modulation! In rereading your write-ups on the topic, you refer to your doctor testing your Natural Keller Cell function. I just emailed my doc about having mine tested before starting your protocol but he wasn't aware of any way to test that clinically. We are both wondering, what the name is of the test your doc uses?Anonymoushttps://www.blogger.com/profile/11509882479514714862noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-73623130754193721722017-09-28T13:28:17.598-04:002017-09-28T13:28:17.598-04:00Hi, Julie -
So glad to hear that Imunovir has he...Hi, Julie - <br /><br />So glad to hear that Imunovir has helped you, too!<br /><br />This blog post explains more about how and why it works and is more up-to-date - and includes info on a much cheaper alternative to prescription Imunovir:<br /><br />http://livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html<br /><br />I really don't have time to talk on the phone - the reason I was late replying to you is that my uncle died this week & I am preparing to go to the funeral out of state. And I am generally not good with phone calls - it wears me out.<br /><br />But I am very glad to help you however I can online. You can e-mail me privately at jacksonde at comcast.net.<br /><br />If you tell me what area you live in, I can tell you which ME/CFS expert is closest to you.<br /><br />In the meantime, I think you will find this blog post helpful - it summarizes most of the treatments that have helped my son and I over the years:<br /><br />http://livewithcfs.blogspot.com/2015/08/effective-treatments-for-mecfs.html<br /><br />I will be out of town for the funeral but will catch up on e-mail next week. Feel free to send me a message with any questions you have.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-76565594346775602432017-09-25T12:45:02.140-04:002017-09-25T12:45:02.140-04:00Hi Sue!
Thank you so much for your wonderful blog...Hi Sue!<br /><br />Thank you so much for your wonderful blog.<br /><br />I've been sick with ME since 2011. I started Imunovir a couple months ago. Right away it helped with side effects I was having from Clonazepam ( I take it for sleep). I figured it helped cause it was helping my immune system??? A doctor told me that some people with ME react strongly to medications because their immune system is very sensitive. So that was the 1st thing I noticed with Imunovir.<br /><br />The 2nd thing I noticed, is that it's helping me with my hormone imbalance. I read that the immune system is linked the hormonal system. My hormone medications are getting too strong for me I have to reduce them.<br /><br />I'm very happy about that. I can't wait to see what other things Imunovir is going to improve.<br /><br />I have a lot questions regarding other medications you take. I don't really have an ME specialist.<br /><br />Would it be possible to talk over the phone? I feel so lost and I'm desperate cause I'm severe and I have a baby to take care of.<br /><br />Thank you.<br /><br /> Juliehttps://www.blogger.com/profile/08079378982814816066noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-7118601369717677592017-09-22T17:28:03.273-04:002017-09-22T17:28:03.273-04:00Sorry to hear that Imunovir didn't work for yo...Sorry to hear that Imunovir didn't work for you, but I'm glad you found something that has helped! I hadn't heard of Nexavir before, but I looked it up and see it is a brand name for kutapressin, which has been used as an anti-viral to treat ME/CFS for many years - so glad it has helped you!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-19306419931588102692017-09-22T00:52:59.996-04:002017-09-22T00:52:59.996-04:00I tried Imunovir. I couldn't tolerate more tha...I tried Imunovir. I couldn't tolerate more than one per day. It made me so weak after two months I could hardly talk. I felt like I had a bad flu. I stopped taking it. I had much better luck with Nexavir. I order directly from Nexco in Texas.Donnahttps://www.blogger.com/profile/06783509590133579030noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-52390187076804810872017-09-19T12:42:56.737-04:002017-09-19T12:42:56.737-04:00Thank you for your comment, Barbara, and for takin...Thank you for your comment, Barbara, and for taking the time to write!<br /><br />I am thrilled to hear that Imunovir has worked so well for you for so long. This is an older post. Here is the more recent one on inosine, just updated this year:<br /><br />http://livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html<br /><br />That one explains that during that shortage of Imunovir in 2014, we switched to generic inosine (available in the US as a supplement) and saw absolutely no difference!<br /><br />As far as I know, there are no plans to go through the FDA approval process. It wasn't rejected in the US - they have just never applied to FDA (and, yes, I do think there are politics involved!). So, we used to get ours from Canada, as you do.<br /><br />But inosine is SO much cheaper!! It's roughly $20 for the same amount we used to pay over $100 for for Imunovir, plus no shipping fee. I included links in that post to some of the brands we've tried (Source Naturals is our favorite though they all seem to work the same). It's at least worth trying a $20 bottle for you - you could save so much money if it works for you the way it has for us.<br /><br />Good luck - and please let me know how it goes!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-24600049891776317692017-09-14T13:47:07.194-04:002017-09-14T13:47:07.194-04:00I have taken Isoprinosine/Imunovir since 1986 whic...I have taken Isoprinosine/Imunovir since 1986 which was suggested by a physician who had CFS and unable to work. Within days I was considerably healthier, no more night sweats that soaked my gown nightly, more energy, took 2 tabs 3X daily so started with 6 (which was before Cheney and others came up with how it should be taken), I import from Canada distributor with letter/RX from my doctor yearly, no FDA problems for personal use, but I have tried stopping and within 10 days I am back in bed with all the bad symptoms and would never consider going off this great drug. The Canadian distributor has conferenced with Nancy Klimas in Florida so I hope some exception can be made with FDA so we can obtain it here on our insurance even though Newport Pharmaceuticals of Dublin has no plans for double blind studies in USA. I don't know if there is politics involved or not. I have been told double blind studies are expensive, this medication is mostly sold over the counter in most countries (I found it was in Greece and Mexico), it has proven to be safe do you have any new information on approval in this country AND is Inosine really almost as affective? I hate paying the high prices and no insurance coverage for partial shipment. You wrote a good article and my personal contact is 541 764 2665. BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-12127811430237588832015-02-16T09:27:52.178-05:002015-02-16T09:27:52.178-05:00HI, Sita -
Thanks for your kind words about my b...HI, Sita - <br /><br />Thanks for your kind words about my blog - I am so glad you're finding it helpful!<br /><br />Inosine is not the EXACT same compound as Imunovir but it is very close. We switched to inosine last year and saw no difference at all in how it affects us - still works great! Here is a newer post that includes our dosing schedule (dosing is critical) and a link to the brand we buy from amazon:<br /><br />http://livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html<br /><br />Hope that helps - let me know if you have any other questions - and I hope the inosine helps you!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-26256374641760963212015-02-15T19:04:02.290-05:002015-02-15T19:04:02.290-05:00Hi Sue,
Thank you for such a great blog and for ...Hi Sue, <br /><br />Thank you for such a great blog and for putting your heart and soul into helping all of us. I just came upon your blog today and am glad I did. Thank you! <br /><br />Is Inosine the exact same compound as Immunovir? And where do you get it? <br /><br />Thank you again so much. Love, SitaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-72557450260045331572015-02-04T08:58:33.110-05:002015-02-04T08:58:33.110-05:00Our CFS specialist is in NYC, but we live in Delaw...Our CFS specialist is in NYC, but we live in Delaware. In DC, your best bets are either Dr. Susan Levine in NYC (easiest way to get up there is a 3-hr train ride from DC) or Dr. Charles Lapp in NC (Charlotte, I think). Unfortunately, there aren't any well-known ME/CFS experts in the DC area, though you can check these databases for someone who understands the illness:<br />http://livewithcfs.blogspot.com/2011/01/finding-doctor-for-mecfs.html<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-4478359320072577302015-02-02T00:56:16.461-05:002015-02-02T00:56:16.461-05:00Sue, are all your docs in nyc? I am in the dc area...Sue, are all your docs in nyc? I am in the dc area and desperately in need of a doc that understands CFS, OI, etc. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89029861945887004522015-01-29T15:31:00.431-05:002015-01-29T15:31:00.431-05:00thank you! here's hoping it helps me. just to ...thank you! here's hoping it helps me. just to note - the chelation i'm doing (frequent low dosing of ALA and DMSA) increases my energy levels very much on days i'm chelating. it could be getting the metals out, but the other thing it's doing is providing a steady and continuous flow of antioxidants in my system. i'd never dosed antioxidants on their half life before - only taking 1-2 x a day. it's a tremendous difference to take on the half life (3-4 hours).<br /><br />if ionsine doesn't help, i'll move on to LDN. thanks, SusanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-61020290161120004302015-01-27T16:54:15.748-05:002015-01-27T16:54:15.748-05:00Yes, dosing is the same because they are the same ...Yes, dosing is the same because they are the same thing. - Imunovir is just a brand name for the compound inosine.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-13562357367187727832015-01-27T11:54:59.527-05:002015-01-27T11:54:59.527-05:00ok, so from your comment, i'm assuming when yo...ok, so from your comment, i'm assuming when you say "same" it's not just about the compound being the same, but the dosing too? i.e. 500mg of Imunovir = 500 mg of ionsine. thanks, SusanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-32925846272164779182015-01-26T21:49:59.076-05:002015-01-26T21:49:59.076-05:00Vaccines are a common trigger, too - they are just...Vaccines are a common trigger, too - they are just doing what they are supposed to, stimulating the immune system, but some of us are genetically predisposed to ME/CFS and then the stimulus of a vaccine (perhaps at the same time the body is fighting an infection (without you knowing)) triggers the immune dysfunction of ME/CFS to start.<br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-56684103808431334282015-01-26T21:48:31.082-05:002015-01-26T21:48:31.082-05:00Yes, dosing is the same - Imunovir is the brand na...Yes, dosing is the same - Imunovir is the brand name Rx med sold in Europe and Canada; inosine is basically the same compound, only sold generically in the US as a supplement. They are essentially the same.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80005641473737939612015-01-26T12:29:59.161-05:002015-01-26T12:29:59.161-05:00and sorry to ask you to repeat, but i didn't s...and sorry to ask you to repeat, but i didn't see the pulsing/dosing for iosine, only imunovir. same dosing? it comes in 500mg tabs. thanksAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-73669501489320398052015-01-26T11:19:20.258-05:002015-01-26T11:19:20.258-05:00Wow. that explains why i'm always sick, but ne...Wow. that explains why i'm always sick, but never get sick with colds/flu. that has been confusing to me b/c i know my immune system is compromised, so why don't i get colds? it's in overdrive. ok...another piece to the puzzle. chelating mercury via andrew culter's protocol is helping me incrementally (I'm on round 10 - minimum 100 rounds are needed) and have noticed slight improvements in the duration of good periods of energy. hopeful there that in addition to viral components is the metal component.<br /><br />my CFS developed after vaccinations. i never had mono or swollen glands.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89613255607071128452015-01-24T16:54:33.424-05:002015-01-24T16:54:33.424-05:00"viral crash" is just our own term at ou..."viral crash" is just our own term at our house! We've noticed over the years that sometimes you crash from doing too much - a post-exertional crash. Sometimes you crash from stress or not resting and taking care of yourself enough. And sometimes, you get exposed to a virus and that causes a crash.<br /><br />Because of our overactive immune systems, we rarely "catch" viruses, like colds, but being exposed to one can trigger our immune systems into even more overdrive than they are already in, increasing all those immune symptoms. Those exact symptoms - one of the key characteristics of ME/CFS - vary from one person to the next. For me, it's usually a sore throat and flu-like aches, coupled with the no-energy feeling of exhaustion that is so hard to describe to healthy people. In short, feels like the flu. Other people may not get the sore throat, might have swollen glands, or might feel feverish without actually getting a fever.<br /><br />For us, a viral crash doesn't FEEL: any different than any other crash - it's just a matter of what triggered it to begin. For my son and I, those virally-triggered crashes are always the worst in terms of both severity and duration.<br /><br />We've noticed a great decrease in that kind of virally-triggered crash since inosine, probably because it is normalizing the immune system so it doesn't overreact so horribly (or so often) to every little thing that we're exposed to.<br /><br />Hope that helps - again, it's nothing official, really - just what we use to describe that set of events.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-43308541782009517862015-01-24T13:32:13.043-05:002015-01-24T13:32:13.043-05:00thank you. i've been living with CFS for years...thank you. i've been living with CFS for years now onset from 22 vaccines i received in the peace corps in 96. i have not treated with drugs yet, but want to try. i guess i'll try ionsine first as it's available via online.<br />when you say viral crashes, what symptoms do you get with these? when i get a crash, it involved a flu like feeling along my nerve endings, including even more fatigue.<br />thanksAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-22098610240465884242015-01-23T18:39:50.874-05:002015-01-23T18:39:50.874-05:00We have had success with both LDN and Imunovir. i ...We have had success with both LDN and Imunovir. i don't think it matters which you try first, though I like to try one new treatment at a time just so I can tell what is helping.<br /><br />Here is more info on our more recent experiences with both:<br /><br />http://livewithcfs.blogspot.com/2014/09/treating-immune-dysfunction-in-mecfs.htmlSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-48384221014311408072015-01-23T18:38:49.881-05:002015-01-23T18:38:49.881-05:00Hi -
Glad you found my blog and are having some ...Hi - <br /><br />Glad you found my blog and are having some success with the heavy metals - that's not something I have tried yet.<br /><br />Inosine is NOT D-ribose (which is a sugar). From what I've read, inosine's chemical compund is attached to a ribose ring but it is more complex than that.<br /><br />D-ribose helps with energy production (only mildly for me). Inosine helps to normalize the immune system.<br /><br />Inosine has definitely been helpful to us - I have seen a great decrease in allergy symptoms, and both my son and I have far fewer virally-induced crashes and overall, more good days and fewer bad days.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-2220802476270866492015-01-23T17:28:06.067-05:002015-01-23T17:28:06.067-05:00p.s.
also, would you suggest starting with LDN and...p.s.<br />also, would you suggest starting with LDN and then imunovir? i am wanting to try both as well. thanks.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-43740976275035679652015-01-23T17:24:44.774-05:002015-01-23T17:24:44.774-05:00Hi Sue,
Thanks for you info on imunovir. i was jus...Hi Sue,<br />Thanks for you info on imunovir. i was just reading and interview with Cheney and saw this is what he recommends for increasing Uric acid as it's a powerful scavenger of peroxynitrite - which we CFS people have trouble with.<br /><br />Question: i looked up inosine and it appears it nothing more than d-ribose? so is imunovir just d-ribose?<br /><br />also, have you done any heavy metal chelation? i just found you so i'll have a look in your past posts. i am on round 10 of Andrew Cutler's protocl and am feeling improvements while on rounds and off rounds, killer headaches. (so it's doing something).<br /><br />i wonder how many CFS miss the mercury piece. but i don't want to put all my eggs into that basket and want to feel better soon as i'm coming down to the wire in will to live and motivation to keep at this for decades now. and want to try some heavy hitters, like drugs now.<br />thanks!Anonymousnoreply@blogger.com