tag:blogger.com,1999:blog-22576999.post7039083489306753809..comments2024-03-28T17:38:39.157-04:00Comments on Live With ME/CFS: Throwback Thursday: Immune Dysfunction in ME/CFSSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-22576999.post-33853511011132379582020-06-03T12:40:46.485-04:002020-06-03T12:40:46.485-04:00Glad to hear it! Good luck with increasing glutath...Glad to hear it! Good luck with increasing glutathione - it made a HUGE difference for us!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-13680966763463356282020-06-02T04:05:00.666-04:002020-06-02T04:05:00.666-04:00thank you Sue I am in the great group. I will read...thank you Sue I am in the great group. I will read the link you add here. again thank you very much for reply me:)Anonymoushttps://www.blogger.com/profile/05593783497982245829noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-25739332489328024142020-06-01T10:47:35.283-04:002020-06-01T10:47:35.283-04:00There are lots of different options to try to incr...There are lots of different options to try to increase glutathione, as I describe in this post. I wrote a separate, detailed post all about glutathione. It's linked in this post, but here it is again:<br /><br />http://livewithcfs.blogspot.com/2017/03/increasing-glutathione-in-mecfs-related.html<br /><br />Try some of the suggestions there & let me know how it goes. <br /><br />And are you in our Parents' group on Facebook? It's an outstanding group of parents of kids with ME/CFS from around the world - very compassionate and supportive but also with lots of great information, too. If you haven't joined yet, here's the link - just be sure to answer the questions that pop up after you click on Join - that's how the admins know if you fit the group:<br /><br />https://www.facebook.com/groups/164665786958252/<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-82172124284634110672020-06-01T02:02:49.005-04:002020-06-01T02:02:49.005-04:00hello sue thank you for all information. my child ...hello sue thank you for all information. my child is 10 years old suffer of cfs. can you reccomende to me which glutathione to buy him? we live in israel. thank youAnonymoushttps://www.blogger.com/profile/05593783497982245829noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-8391231722814557472018-06-16T09:24:51.903-04:002018-06-16T09:24:51.903-04:00Hi, Leo - You addressed your comment to Sally, a c...Hi, Leo - You addressed your comment to Sally, a commenter on this post, so I hope you don't mind me replying to it (I am the author of this post & blog) - I'm not sure if Sally is still signed up to see what is posted here.<br /><br />You and your doctor are right - there are NO tests that prove ME/CFS. It is diagnosed clinically (i.e. based on symptoms) and by ruling out other possibilities. The biggest clue is an intolerance to exertion or exercise, where you feel very sick & all your symptoms worsen (i.e. a crash) anywhere from 1 hr to 24 hours after even mild exertion. So, once you know you have ME/CFS, there is no need for further testing. My doctor has the same philosophy as yours, and I think it makes a lot of sense - before running a test, she always asks, "what will we do with the results?" If there is no treatment that will result from testing, then it is probably a waste of money.<br /><br />Glutathione is absolutely essential for us, but don't waste money on the pills - they are very poorly absorbed and it won't get into the cells where it is needed. Glutathione may not be something you can get from food, but it IS something that a normal, healthy body produces on its own that we with ME/CFS don't produce enough of. That's why it's important for us to supplement. And glutathione is critical to SO many important processes in the body - immune function, energy production, detox - that it really is essential. Click the link in this blog post to the blog post on glutathione - it explains why we need it and the best ways to get it (injections, IV, or nasal spray are most effective).<br /><br />As for OI, if you have ME/CFS, then you almost certainly DO have some form of OI. It's not always obvious for us. I was certain that my son and I didn't have it because we'd never felt dizzy or fainted...and I was so wrong! Consider how you feel when you have to stand - in line (queue) or for some other reason. Can you stand as long as the healthy people around you? Do you feel worse after a period of standing? Do you find yourself fidgeting a lot if you have to stand? Go ahead and read this post on OI:<br /><br />http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html<br /><br />Over 97% of people with ME/CFS have it, and treating OI can be absolutely life-changing! It's what got my sons back to school full-time when they were younger and what now allows my older son and I to live fairly normal, active lives - he is at a 4-day outdoor concert with friends this weekend!<br /><br />As for LDN, the dosage can be tricky because everyone is different - use a little trial and error to find out which dose helps you feel better without any side effects - there's a link here to a post with more information on LDN, too.<br /><br />Good luck! Sounds like you are in good hands with a doctor who actually understands ME/CFS, so that is HUGE (and rare). Do you mind telling me who your doctor is? You can send me a private message rather than posting here if you prefer (click on View My Complete Profile way up above for an e-mail link). I've been compiling a list of doctors who know how to treat ME/CFS around the world, and I don't have anyone listed yet in Israel or any part of that region at all.<br /><br />Thanks and good luck!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-33619406413352744352018-06-16T03:41:31.867-04:002018-06-16T03:41:31.867-04:00Hi Sally, thanks for taking the time to write this...Hi Sally, thanks for taking the time to write this - it is really insightful.<br />I too have been suffering with some form of ME / CFS for almost a year but I am struggling to get a diagnosis. My GP is trying to be pragmatic and is giving me medication like LDN as he said that even if I do mitochondrial tests/ MRI it won't prove anything because the tests are not causative - this makes me feel somewhat hopeless; in any case I am not insured for these test doesn't give an indication for treatment. What do you think? He also suggested like you do glutathione pills and phosphatidycholine pills - both of which are weird to me as they are found naturally in food. He also suggested an antioxidant supplement called Granalix, which I take. I do have EBV but didn't think too much of it, since the doctors didn't. Also, I read what you wrote about OI - I don't feel a difference when I sit and stand - is this something you would feel?<br />Sending love to everyone in this community - it is tough<br />Leo<br />IsraelAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-85378264775510664542018-03-04T06:38:21.607-05:002018-03-04T06:38:21.607-05:00Wow, thanks so much for chasing that up for me Sue...Wow, thanks so much for chasing that up for me Sue! :)Anonymoushttps://www.blogger.com/profile/03692460435729437810noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-44004291350029061692018-03-02T10:34:42.895-05:002018-03-02T10:34:42.895-05:00Hi, Sally -
When you mentioned Perth, I checked ...Hi, Sally - <br /><br />When you mentioned Perth, I checked with a friend in Australia who I thought had lived there (her daughter has ME/CFS). Here's what she suggested re: local doctors - "Am in Perth now. We see Dr Edmund Lee for OI but he’s not ME/CFS otherwise. Still, it’s a start. We also see a naturopath Eloise Charleson whom I trust. Also I’ve heard of a functional medicine practice that I’d probably try - Churchill Health in Shenton Park. If I hear anything else I’ll let you know."<br /><br />Hope that helps! Good luck!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-7391093091924571722018-02-28T04:29:31.207-05:002018-02-28T04:29:31.207-05:00Hi Sue,
Thank you for taking the time to read my ...Hi Sue,<br /><br />Thank you for taking the time to read my post.<br /><br />Everything you have said makes so much sense. It is such a shame we have to doctor shop just to find someone who is on top of this stuff!<br /><br />Unfortunately I live in Perth which is a smaller capital city and on the more isolated side of Aus. We do have a good CFS/Lyme doctor here but he is very expensive and his waiting times are very long. I think it may be worth it though. I am not sure about his stance on anti-virals but he prescribes LDN.<br /><br />I don't believe the Effexor helps at all, in fact I do wonder if it contributes to my fatigue, as I started taking it roughly the same time I had glandular fever and developed the fatigue. It certainly helped my anxiety and panic disorder but my gp should have encouraged me to come off of them years ago in my opinion. I want to try to come off of them but the withdrawals are horrible, even when you taper so i am very hesitant.Anonymoushttps://www.blogger.com/profile/03692460435729437810noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-58654945930009828142018-02-27T16:43:30.630-05:002018-02-27T16:43:30.630-05:00Hi, Sally -
Thanks for your note & for shari...Hi, Sally - <br /><br />Thanks for your note & for sharing your experiences - I'm gad you found your way here! So many things come to mind in reading your story...<br /><br />"Post-viral fatigue" is just another name for ME/CFS (often doctors who don't like or don't believe in ME/CFS, use post-viral syndrome instead).<br /><br />The immune dysfunction of ME/CFS causes old/dormant viruses to re-activate. So, what is happening with you with EBV and CMV is not unusual at all - for someone with ME/CFS. This is, in fact, at the root of our illness, and as you noticed, the herpes family of viruses are common culprits for reactivation - my own son got shingles (caused by the chicken pox virus) a few years ago.<br /><br />This IS treatable, and I would urge you to find a doctor who understands that - and isn't afraid of the ME/CFS diagnosis because this is 100% normal for us. What you need are antivirals, as described in this post. Those reactivated viruses need to be treated aggressively with antivirals - that will help you to improve tremendously and may even cause a partial or full recovery, since you also had an EBV trigger that started all this (though that was a long time ago so complete recovery is less common). Valtrex and Famvir are both excellent antivirals that work against all herpes family viruses and are pretty mild, with few side effects. Valcyte is another one that is stronger and more toxic but works for some people.<br /><br />Try this to find a doctor - <br /><br />The Australian ME/CFS Good Doctors List<br />http://forums.phoenixrising.me/index.php?threads/australian-me-cfs-good-doctor-list.6021/<br /><br />The two top doctors/clinics there that I have heard of:<br />Dr. Christabelle Yeoh – Central Coast of NSW<br />Doctors at CFS Discovery Clinic - Melbourne<br /><br />If you can get to someone who really understands ME/CFS & get on antivirals, you have the potential for some real improvement (though you are likely to get worse first on antivirals - that means they are working - come back & talk to me when you get to that point!)<br /><br />Good luck - let me know how it goes!<br /><br />Sue<br /><br />P.S. Do you feel the Effexor helps? It is an antidepressant that might have some positive effects with ME/CFS. However, your "anxiety" is very likely due to OI, which causes symptoms that feel exactly like anxiety - treating OI can also bring dramatic improvements (and any expert should know about it) - here's more info: <br /><br />http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.htmlSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-12184781672383642132018-02-26T02:49:10.386-05:002018-02-26T02:49:10.386-05:00Hi Sue!
I am so glad I found your blog! Everything...Hi Sue!<br />I am so glad I found your blog! Everything I have read so far makes so much sense! My name is Sally and I am 30.<br />I have lived with chronic fatigue for around 14 years, after I had a bad dose of Glandular Fever caused by EBV. I was acutely ill for a few weeks, lost lots of weight, and was off of school for ages. I was never the same. <br /><br />A year or so after this I was still struggling with fatigue and was told I had post viral fatigue. Around about the same time I was also diagnosed with generalised anxiety and put on Effexor. I am still on this.<br /><br />For all of my 20's I have struggled with moderate fatigue and various other symptoms like brain fog and migraines. I have good weeks and bad weeks. Some weeks I can work, come home and stay up until a normal hour but on bad weeks I have days off from work, or go home from work and straight to bed. Most weekends I spend 'catching up' on sleep by sleeping all day and all night. I can get up from sleeping all night, put on some washing and fall asleep on the couch again for a few hours.<br /><br />On average I probably get more colds than most people. I have been seeing my doctor for years on and off looking for answers and not getting very far.<br /><br />In the middle of last year (winter in Australia) I became quite ill with cold sweats, sever migraines, stomach pain and nausea, no appetite and dizziness. I went to the doctor who did some bloods and it came back with very high liver function readings. More tests and it revealed that I had co-infection with EBV and CMV which had caused hepatitis of my liver. The lab tech and my doctor said it was very unusual to see someone co-infected and for it to affect my liver as much as it did. <br /><br />Despite this, my doctor didn't seem phased and told me to rest. I am certain that this is all linked to my fatigue. It is worth noted I also had chicken pox twice as a child (hospitalised with secondary infection on one occasion). So... I have a atheory that I had immune dysfunction that means I cannot keep herpes viruses at bay and this causes my CFS. I recently had bloods done again, 9 months after my acute illness and I am still showing 'weak positive' for current CMV infection.<br /><br />Everything you have said above rings so true. I want to find a doctor who will look into this further for me. It is too much of a coincidence. <br /><br />Interested in hearing your thoughts.<br /><br />Kind regards<br />Sally<br />AustraliaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-40434822814406150492017-12-09T16:51:49.024-05:002017-12-09T16:51:49.024-05:00Hi, Lori!! So nice to hear from you and to hear th...Hi, Lori!! So nice to hear from you and to hear that Jessie is stil doing pretty well & living a normal life - wow, nursing is seriously high-exertion! I'm impressed :)<br /><br />But I agree with you - what you're describing does sound like immune dysfunction - the sore throat after excessive exertion is the key. I would definitely encourage her to try some immune modulators - tell her it will help her fight off all the "bugs" she's exposed to at the hospital (which is true) - she might try inosine which doesn't require a prescription - though the dosing is complicated. She would also definitely benefit from herbal antivirals, like I describe in the link on Virally-Triggered Crashes - those will help whether she thinks she has immune dysfunction or not. My husband is perfectly healthy, and he takes loads of olive leaf anytime he;s exposed to a virus!<br /><br />Great to hear from you - glad Jessie is well and hope you are, too!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-81186669188178427472017-12-07T10:55:30.204-05:002017-12-07T10:55:30.204-05:00Hi Sue! Hope you and the family are doing well. So...Hi Sue! Hope you and the family are doing well. So glad I stumbled onto this post this morning. <br /><br />As you're aware, Jessie has been doing really well - recovered, we love to say. However, it does seem that her immune system isn't completely normal and I wonder if it ever will be. She just began working 12-13+ hour shifts as a pediatric ICU nurse at the children's hospital here in Atlanta and after one or more of those shifts she needs at least a day to recover. She tends to get a sore throat and swears she's got a bug but we worry it's just immune crap. Anyway, I'm going to take some of the advice from this post and pass it on, so THANK YOU!<br /><br />Take care! XOXOLori Plylerhttp://loriplyler.comnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-42498273589011421752017-10-24T18:14:16.857-04:002017-10-24T18:14:16.857-04:00Sorry to hear you are suffering, too, Lisa! The im...Sorry to hear you are suffering, too, Lisa! The immune system treatments mentioned here - LDN, inosine, and glutathione - all help ANY kind of immune dysfunction. They are all immune modulators that help to normalize your immune system, whether your dysfunction is upregulated (like autoimmune) or immune deficient, like HIV, or a mixed bag, like ME/CFS.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-8558778429894524992017-10-24T00:11:09.859-04:002017-10-24T00:11:09.859-04:00Lots of great information! My don't have your...Lots of great information! My don't have your conditions, but also have a screwed-up immune system. ThanksLisa Ehrmanhttps://www.blogger.com/profile/10161940293621569520noreply@blogger.com