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LDN

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pet48859
pet48859

Hi there, it’s been a while, I’ve not been receiving emails updates for some reason. I just thought people had stopped posting! Quite the opposite if seems. So just been having a catch up over the last few days reading posts, phew I missed out on a lot it seems.

Anyway... currently in a bad relapse the last month or so & this LDN (low dose naltrexone) keeps popping up, so doing a bit of research on it. From what I’ve found so far - same with most things - it helps some but not all & can make some worse. Have any of you heard any stories of it or tried it at a low dose yourself?

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  • KPD
    KPD pet48859

    Posted

    Yes! Wouldn't it be nice to go somewhere and return cured from CFS! I always divide my life into 2 parts-the life before CFS struck me and robbed me of so much and the life after CFS!

    I must admit that I had periods in my life (as I was struck with this illness in my 30s) where I functioned pretty normally. I actually managed to have and raise a child and work a part-time teaching job. Now in my 50s, my condition has gotten even more unpredictable which leads me to think that my symptoms could be associated with hormones or the lack of! That's not to say that it is the cause but certainly the fluctuation of hormones have made the symptoms worse.

    In my search for treatments that might help, I also found some information on the thyroid possibly contributing to CFS/ME. I know this discussion is mostly about LDN, but having your thyroids tested could be helpful, especially having the Free T3 levels tested. New data is finding a link between low free T3 levels and CFS.

    Still hope that some more people chime in here about LDN and if it is helpful. From my understanding, it helps support or boost the immune system, right? Unfortunately, they still do not know the cause for CFS, and I think there are different causes. In my case, I think I had an allergic reaction to something and that my immune system over-reacted. I believe that my case is autoimmune rather than an under active immune system.

    Pet, meaning to ask you...what do you think caused your relapse this past month and at what age were you first diagnosed? Did it come on suddenly or gradually? KPD

    • pet48859
      pet48859 KPD

      Posted

      Oh if only there was such a place. Like you I also look at 2 parts of my life, I grieve for the old me. I was so fit & healthy, had my own hairdressing business & a single mum bringing up my 2 daughters, very capable, a real gym bunny, a social butterfly. I’ve been told I need to stop comparing & come to terms with how it is now as it’s causing me to continuously fight! It’s hard as I’m sure we all do it. I had a relationship breakdown in 2008 & an operation very close so i think trauma was a big factor plus I burnt myself out physically & mentally. I also cared for my sick mum & she passed away. I was fiercely independent & wouldn’t let anyone help, which is why I’m struggle now. I need help & I keep pushing myself to do little jobs around the house, go to friends for dinner (when I really shouldn’t) even though I rest there in between courses etc. I just want to do normal things now & again - albeit I pace round them massively & get the pay back- hence this relapse. It’s been 11 years now, mostly house bound for the last 6 when I had to give my business up. I’m 49 now & think I’m also hitting menopause so like you say probably not helping things. I’m coming back as a man next time! No offence you guys who may be reading ha.

      So is free T3 something different to the normal thyroid tests? Will the gp do it? As I’ve had the normal ones with gp & they’re always normal. Funny though how my throat always feels restricted like it’s being squeezed, can be hard to talk at times. The thyroid gland is in the throat is seems it has to have a connection somehow.

      Wow that’s took hours to collate this message.. Brain fog now, rest time now oh I’ve always got so much to say!! Well I was a hairdresser - I guess it never leaves you lol

      pet

  • KPD
    KPD pet48859

    Posted

    Hi Pet,

    Here is a link to an article I read about low T3 levels found in CFS patients. If you google the subject, you will find a lot more information. It is quite complex. I'm not sure they will allow me to share the link on here, so if it doesn't show up, just google, "low T3 levels and CFS."

    https://www.medscape.com/viewarticle/894601

    Hope this helps. And yes I do long for the days I could work a full time job, jog a few miles daily, and then have time to be social. I struggle to get out socially, but try my best to do so on occasion because it makes me feel somewhat normal. I do pay for it the next day. KPD

    • pet48859
      pet48859 KPD

      Posted

      Thank you for this KPD

      I will look into it

      I hope you're having a better day

      pet

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