tag:blogger.com,1999:blog-22576999.post3552693910574474594..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: We Are EverywhereSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-22576999.post-82485182099366908492014-10-28T13:58:46.633-04:002014-10-28T13:58:46.633-04:00Thanks for sharing with #ThrowbackThursdayLinkup a...Thanks for sharing with #ThrowbackThursdayLinkup again this week Sue. As much as I hate finding people who suffer from an invisible illness as I do, there is some comfort knowing that someone understands. It can be very isolating. Tanya @ Moms Small Victorieshttps://www.blogger.com/profile/17520133909287154535noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-62024196870929891542014-10-23T20:39:34.472-04:002014-10-23T20:39:34.472-04:00I have a friend who has fibromyalgia and I hate to...I have a friend who has fibromyalgia and I hate to see her in pain. Feeling invisible doesn't help your health or self esteem. I'm glad you were able to meet someone who can relate to you. :) I look forward to reading more of your posts in the #throwbackthursdaylinkup.Tami @ This Mom's Delighthttps://www.blogger.com/profile/06245766594711929551noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-52814917439556718392009-10-16T16:44:29.680-04:002009-10-16T16:44:29.680-04:00Oh, what a great post Sue...there are more of us t...Oh, what a great post Sue...there are more of us than we realize as we mostly endure in silence if not isolation.... So glad you were able to connect with someone else who understands..you son too...great for him I am sure.Reneehttps://www.blogger.com/profile/07089685282700680525noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-13641216396145385122009-10-16T15:20:17.896-04:002009-10-16T15:20:17.896-04:00Dear Amy -
I guess it's time for a low-dose ...Dear Amy - <br /><br />I guess it's time for a low-dose naltrexone (LDN) update - I'll post one soon. Meanwhile...<br />Yes, I still take LDN and it remains the single best treatment I've ever tried for CFS in 7 years. It has given me about a 10-15% improvement in functioning capability. I also take anti-virals because I tested positive for HHV-6 and EBV. Anti-virals and LDN work well together, though it's worth trying on its own too.<br /><br />You're right - I've had a rough year, but that has nothing to do with LDN. I got Lyme disease last summer, which made me significantly worse for many months. My Lyme symptoms are finally gone now, but I'm still on antibiotics. And I've been in terrible shape this past month - probably due to exposure to the flu. Prior to this current crash, I went more than 30 days without a single crash day! LDN has given me many more good days and fewer crash days.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89223961990057266852009-10-16T12:19:50.093-04:002009-10-16T12:19:50.093-04:00Hi Sue. I've been combing the articles and pos...Hi Sue. I've been combing the articles and posts from the recent NYTimes coverage, and I'm left with questions about LDN. Can't believe that in 20 plus years of treatment, this is the first I've heard of Naltrexone. I did read your post from last year about it. It sounded positive, but your recent posts give me the impression that it's not working as well anymore? Please let us know... <br />Thanks,<br />AmyAnonymoushttps://www.blogger.com/profile/13997446278276974609noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-74760830764499383672009-10-16T10:46:28.026-04:002009-10-16T10:46:28.026-04:00Thanks, Sue! I'm printing it out right now to ...Thanks, Sue! I'm printing it out right now to read offline. I appreciate.Prishttps://www.blogger.com/profile/03970753027686923295noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-20458314853610489022009-10-16T09:39:27.750-04:002009-10-16T09:39:27.750-04:00Pris -
I meant to include a link in yesterday...Pris - <br /><br />I meant to include a link in yesterday's post to my info on low-dose naltrexone, but I was just too wiped out to mess with links!<br /><br />here it is...<br /><br />http://livewithcfs.blogspot.com/2008/04/low-dose-naltrexone-treatment-for-cfs.html<br /><br />If that link doesn't print completely, it was my April 4, 2008 post - you can find it through the monthly archives in the left column or by typing low-dose naltrexone into the search box.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-15712644201751982842009-10-15T17:20:04.266-04:002009-10-15T17:20:04.266-04:00I love this post, too!
btw, have you found that t...I love this post, too!<br /><br />btw, have you found that the Naltraxine helps you? I've not tried it but have been curious.Prishttps://www.blogger.com/profile/03970753027686923295noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-15675753105540156872009-10-15T16:41:47.653-04:002009-10-15T16:41:47.653-04:00Thanks for posting this Sue. I've been feeling...Thanks for posting this Sue. I've been feeling extra invisible lately for various reasons.<br /><br />How wonderful for you both that you met someone who suffers from this. <br /><br />I needed to read this today so thank you.me/cfs warriorhttps://www.blogger.com/profile/01299057722862223585noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-66360119189128292252009-10-15T13:00:01.570-04:002009-10-15T13:00:01.570-04:00My sister recently had a stroke, and has been diag...My sister recently had a stroke, and has been diagnosed with fibromyalgia since then. She was down for a wedding, and we were talking together. Suddenly, my mind went blank, and I stared at her for a few moments, mid-sentence. She suddenly burst out laughing, hugged me, and said, "Welcome to my world!" We laughed and laughed -- finally, someone who understood <i>exactly</i> what the other was going through. We're closer now than we ever were before.<br /><br />Yes, I know exactly what you're talking about!Shellihttps://www.blogger.com/profile/04533995997196611261noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-63941646427967170262009-10-15T12:34:10.346-04:002009-10-15T12:34:10.346-04:00What a great post, Sue. You're right too! I&...What a great post, Sue. You're right too! I'm glad you met a new friend.Lori Phttps://www.blogger.com/profile/01808703279193470654noreply@blogger.com