1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

Low dose Naltrexone

Discussion in 'General Treatment' started by Cort, Jul 22, 2009.

  1. Jenny

    Jenny Senior Member

    Messages:
    1,225
    Likes:
    182
    London
    Hi Diva

    I think your second explanation is more likely - that the LDN has modulated the immune system in some way and it's trying to deal with pathogens, and that this continues for a while after stopping the LDN. This is consistent with people saying that improvements while on the LDN continue for some months after they've stopped it.

    Sorry to hear you've still got the rash etc. Perhaps we should take some comfort that it's obviously doing something - I've spent thousands trying things that have absolutely no effect at all.

    Jenny
  2. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Hi Jenny
    I know what you mean, but little comfort if you're going through a bad time. This rash is driving me crazy and nothing I do helps - tried hydrocortisine, E45 anti itch, coconut oil. It looks awful on my hand as well.

    It's difficult to know what to do for the best - stop it and "normalise" or push on through & hope it evens out.

    Tricky one this LDN!

    I think the immune modulation causing problems is the key but we have no control over that - there's a lot lurking in our bodies!
  3. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Found some info on a LDN forum that may help explain different things about LDN.

    This is mainly an MS forum so obviously the info is geared towards that but I still think the info may be useful (or not!). I've bolded a couple of things.

  4. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    thanks for posting that diva55.it was info that i needed to hear.i'm at 1mg and am heading into 2mg the end of this week.i've seen some improvement with my energy but today i'm tired.i've noticed that the initial sense of calm that i got has gone and i'm wondering when i get to the higher dose if it'll return...it was great..didn't matter how tried i was because i felt good..i don't quite no how to explain it.
    good luck to everyone who's taking it.
    i'll report at the 2mg.
  5. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Hi Alice
    By boosting the endorphins you will get the mood uplift which sounds what's happened to you.
    Can't think why it's gone other than it's still modulating somewhat?

    I had a couple of days of sudden deep depression and anxiety - it was pretty scary as it was so sudden. Whether it's attributed to LDN or some other stress issues (outside health) I have I don't know.

    Are you going too quickly by jumping from 1 to 2 mg in a week?

    I'm currently on 1.5 and will stay on that for a complete month. I intend to take Frank's advice by alternating 1.5 with 1.75 each day for the next month to see how I react to 1.75 or maybe even just creep a little over 1.5 for a while.

    Although we're all keen to get to the maximum dose I believe it pays to be on the slow side - but of course we're all different & some do well by jumping straight into the max dose of 4.5mg.


    Goood luck to you & hope you get your good feelings back.
  6. JT1024

    JT1024 Senior Member

    Messages:
    537
    Likes:
    290
    Massachusetts
    This may be duplicate information since I haven't read all the posts on this thread...

    I was on the www.patientslikeme.com website and was looking at the MS community. There are 387 patients taking LDN for MS.

    You can actually view a lot of data on LDN (provided by patients) as well. Here is the link: http://www.patientslikeme.com/multiple-sclerosis/treatments/show/4918-naltrexone

    The FM/CFS community has only 20 patients documenting their LDN: http://www.patientslikeme.com/fibro...igue-syndrome/treatments/show/4918-naltrexone
  7. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    I, too, experience that "tiredness" that is different from the usual CFS exhaustion. It feels more like normal tiredness like I used to experience after a hard day of physical exertion. I also feel like sleeping more, so I often do. It feels like I'm healing something while I sleep.

    One afternoon I lay down for a nap and slept 6 hours of deep sleep. My partner said he was so worried he came to look to see if I was breathing. Then I got up for about 3 hours, went back to bed and slept another 6 hours. It was almost like making up for the years of bad or no sleep.

    Diva and JT, thanks for your research and posts. Diva, I've also had some depressive 'dips', but they didn't last long and were not as deep as in the past, so I feel something in my brain might be healing, too.

    Something about beer really gives me a stomachache. I tried it again over the weekend and got a stomachache that is still bothering me.
  8. darkrobot

    darkrobot

    Messages:
    27
    Likes:
    2
    UK
    I'd also like to echo the point about different types of tiredness- I too still get tired, but it's a more "normal" tired, almost pleasantly tired in fact. Not at all like the bone-aching "ill" tiredness I used to get before starting abx and LDN. I still need a lot of rest, especially if I have been exercising, but it feels like deep, restorative rest.
  9. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    The depressive dips lasted most of the day with me. I took some Gaba Calm and that helped somewhat. I've only had the depressive dips & anxiety on 2 days so I hope they don't come back!

    I've slept a lot more as well which I welcome but some nights I still have insomnia although it seems to be improving. The thing I like about LDN is that I get very drowsy soon after taking it. I used to be up for hours reading in bed & "forcing" myself to sleep but LDN takes over & drifts me nicely into sleep.

    I'm keeping a daily diary to try & track progres / side effects / sleep patterns / pain levels.
  10. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Hi Darkrobot
    Nice to see you posting here & glad LDN is helping you. Did you get to the Glasgow conference?
    I posted some notes on the conference thread.
    I'd still like to find out more about the need for Vitamin D with LDN.

    How long have you been on LDN & what dosage?
    Best wishes
    Diva
  11. darkrobot

    darkrobot

    Messages:
    27
    Likes:
    2
    UK
    Hi Diva,

    No I didn't make it to the Glasgow conference unfortunately. I will check out your notes though. I have heard vague rumours about using vitamin D with LDN, but nothing tangible. I don't take it myself.

    I've been on abx for about 10 months, and LDN for 4 months. I started on a minute dose as it made me wired, but am now up to 3mg per day. I have run out a couple of times and notice a definite dip in energy levels if I'm off it for more than a few days.
  12. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Hi DR
    It was Stephen Dickson who gave a presentation on the importance of Vitamin D.

    I rang up Dickson's the other day and just by chance I believe I spoke to Stephen (silly me forgot to ask!). I asked about Vitamin D and he said you should get your levels checked. But if that can't be done then a safe dose to take is 1000-1200iu a day. He said it was very important to the immune system and compliments LDN very well.

    I'm thinking it could be an added boost for LDN so I'll have to order some.

    Hey great you're up to 3mg - I'm creeping very slowly as like you I couldn't jump into the minimum dose.
    I keep thinking I'm not getting an energy boost but today I did 3 hours of gardening! So it creeps up on you.

    What ABX are you taking & for what reason if you don't mind me asking. If you do just ignore the question.

    Hope the progress continues for you.

    I found lots more notes on the conference but forgot to bookmark it so if I find it again I'll post it on the Conference thread.
  13. darkrobot

    darkrobot

    Messages:
    27
    Likes:
    2
    UK
    That's interesting- I will look into getting some vitamin D when I order my next batch of supplements... The abx I am on for a couple of bacterial infections which were diagnosed privately using dark field microscopy. At the moment I'm taking Clarithromycin, but it changes every few months.

    Slowly but surely seems the best way for a lot of people on LDN- the important thing is that you are seeing improvements, even if they are not dramatic ones at the moment. I hope it continues!
  14. Jenny

    Jenny Senior Member

    Messages:
    1,225
    Likes:
    182
    London
    Are you seeing Dr AW, darkrobot? I had phone consultations with him for a couple of years.

    I've heard he's put quite a few people on LDN - is he having much success?

    FWIW I've been taking 2500 vit D for 3 months, and before that 1500 for 6 months.

    Jenny
  15. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    From what i've heared, the two main things that cause the side-effects when using LDN are:

    -balancing of Th1/Th2, fighting of pathogens -> soar troat, nose stuffed, rash, ... (lasting a few weeks, or longer when building up slow <- which is btw recommended)
    -removal of opoid peptides which are kicked of the mu-opoid receptor and move free in the body, from what i've heard removal of this by the body can take up to a year (and you should also avoid new opoid peptides in your diet: milk, gluten, etc)

    This of course is anecdotal

    Don't give it up to fast.
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,044
    Likes:
    885
    Concord, NH
    I have been on 4.5 mg for a few months now, started of at 1.5mg during a flare up, so it was really rough. Insomnia and the flare up pain was severe 7 to 10 for months! I had a Lidocaine infusion and that knocked down the pain 3 to 4 on a scale of 10. I was out of work for nearly 3 months. Had 2 sleep studies done, and found to have obstructive sleep apnea. Low oxygen, will be on oxygen at night/sleep time soon! I will be looking to make my own LDN since my copay is 25$/month so that adds up in a year!

    Also had my Vitamin D checked in Oct of 2009 with a physical and it was around 37? with 4000 IUs so I boosted up to 8000 IUs and had a level of 70.3 25-Hydroxy Vitamin D in Feb of 2010.

    so it appears I am doing some things right?!
  17. darkrobot

    darkrobot

    Messages:
    27
    Likes:
    2
    UK
    Hi Jenny,

    Yes I'm with Dr AW, he is prescribing LDN to a lot of people now. On another forum I visit, results for LDN for ME/ CFS seem to be quite mixed. Some people are seeeing dramatic improvements, some minor improvements and others no change. A few people are unable to tolerate it.

    Do you feel the Vitamin D is helping?
  18. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Dr. Bihari

    I've just read this on another board - very sad news.


    .
  19. Jenny

    Jenny Senior Member

    Messages:
    1,225
    Likes:
    182
    London
    Hi darkrobot

    I've been taking D3 for years, but only at a higher dose for 6 months or so. I'm afraid like everything else I haven't a clue whether it's helping. I've got much worse over the last 3 months, so there's no evidence that it is.

    My worsening coincided with starting LDN and although I stopped it 2 and a half weeks ago, I'm still getting worse - extreme pain, severe chills, drenching sweats, very painful glands, head pressure, dizziness and vertigo. I can't eat much, have lost a stone in weight can only walk a few steps. I've been mostly bedridden for 8 months though so I was pretty bad before I started LDN. I've never felt so ill in 28 years of this. My husband called a doctor out yesterday evening and he suggested going into hospital. But I'm resisting that.

    It's impossible to know whether this is due to the LDN or just the natural course of this awful illness.

    Jenny
  20. Rita

    Rita Senior Member

    Messages:
    235
    Likes:
    5
    Bernard Bihari, MD
    November 11, 1931 — May 16, 2010

    Bernard Bihari, MD, discoverer of the human uses of LDN, died on May 16th at Beth Israel Hospital in New York City, following a protracted illness. He was 78 years old.

    According to his wishes, no funeral service is to be held and the body will be cremated. A memorial service is being planned for the near future.

See more popular forum discussions.

Share This Page