1. Patients launch a $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!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Low dose Naltrexone

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

  1. sela

    sela Senior Member

    Messages:
    120
    Likes:
    5
    marin co, ca
    i wrote in about milk thistle helping with ldn. i just reread my post and see it is nearly unintelligible. what i meant is that if you are having difficulty sleeping, try the m.t. it helped me immediately. another thing i did in the beginning is take a few days off. then when you restart it, the positive effects are more apparent. the difficult start up really may have to do with it clearing the liver.
    L'engle likes this.
  2. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    thanks sela.i take a tincture for my liver daily and it has milk thistle in it but i can up the amount.
    right now i'm at a loss,my brain fog is so bad today because of allergies.
    suggestions are welcomed right about now.
    should i take a few days off then start up again at night.i can't find any literature or comments saying that taking it in the day is as beneficial as night.
    i would like to give this med a good go with it's full potential.
    yikes i can't think straight.it always astonishes me that i can be doing so well then something like allergies puts me in the dumper.
  3. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    Today there is an LDN conference in Glasgow, Scotland:
    http://www.bigonldn2010.com/

    They will talk in there about LDN for ME/CFS, for fibromyalgia and for other diseases. Does anyone know if there is a broadcast over the internet of this conference?
  4. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    I've looked around some of the other boards & couldn't find a mention of an internet broadcast - shame.

    I think Darkrobot was going to try & attend.
    I'll look out for any notes that come out from it.

  5. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Dr. Skip of Skip's Pharmacy Florida

    I think some here are getting their LDN from Skip's Pharmacy in Florida.

    I read on another board that Dr. Skip has been taken to hospital suffering from a Myocardial Infarction.

    I've heard great things about Dr. Skip personally answering questions with patients taking LDN.

    So I'm sure you will join me in wishing him a speedy recovery.
  6. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    I join you. Get well, Dr. Skip!
  7. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    thanks for informing us diva.get well dr skip!!
  8. JT1024

    JT1024 Senior Member

    Messages:
    531
    Likes:
    282
    Massachusetts
    LDN Trial results from Glasgow LDN Conference

    LONDON--(BUSINESS WIRE)--In a World exclusive, American LDN expert Dr Jarred Younger is to reveal the results of his new LDN trial in the treatment for Fibromyalgia at the Glasgow LDN Conference on 24th April 2010. Dr Younger says I'll be presenting the news even before my own lab knows the results. I am still conducting the analysis - so the results will be hot off the press.'

    Dr Younger will present his findings via video with a live phone link so that questions can be taken. Dr Younger has intimated that The conference will not be disappointed - the results will be worth waiting for and are sure to provoke a great deal of discourse and debate within the field.'

    Organiser of the LDN Conference, Glasgow GP Dr Tom Gilhooly is at the forefront of new treatments for conditions like Fibromyalgia and Multiple Sclerosis. He comments We're very excited to be involved in releasing new LDN trial results. We are actively involved in developing a trial into the use of LDN in MS. In Scotland we have the highest rate of Multiple Sclerosis in the world - and has more to gain than any other country from new research like this.'

    The LDN Conference can also announce that author Dr Bill Code will be flying over from Canada to attend the conference. Dr. Code's book, Winning the Pain Game' is now available in eBook format. Dr. Code was diagnosed with progressive Multiple Sclerosis, and during his search for natural treatments the debilitation deteriorated and he was plagued with the kind of chronic pain so many MS sufferers will recognise. His poignant story has been shortened for ease of reading and documents his journey back to health.

    Dr Chris Steele from ITV's This Morning is also planning to attend. Dr. Steele comments It promises to be an important conference for people suffering from MS and fibromyalgia, and I anticipate wide interest from the medical community.'

    Notes for Newsdesk

    Taking place in Glasgow on 24th April, 2010 at the Thistle Hotel in Cambridge Street, The 2010 European LDN conference is again organised by Dr Tom Gilhooly of the Essential Health Clinic in Glasgow with support from Linda Elsegood and the LDN Research Trust.

    The conference website http://cts.businesswire.com/ct/CT?id=smartlink&url=http://www.bigonldn2010.c... contains the agenda, registration form, venue details plus more information, news and videos on LDN. BIG ON Glasgow will film and post the conference online. The website also offers the opportunity to join BIG ON LDN forums.

    Glasgow GP Dr Tom Gilhooly, an Omega-3 expert, has been at the forefront of research into the relationship between nutrition and a number of common medical conditions, including mental health issues. At his Glasgow Practice, The Essential Health Clinic, Gilhooly treats people suffering from MS, Crohn's disease and other hard-to-treat conditions with Omega-3, with impressive results. Visit http://cts.businesswire.com/ct/CT?id=smartlink&url=http://www.essentialhealt...

    This information was brought to you by Cision http://www.cisionwire.com
  9. JT1024

    JT1024 Senior Member

    Messages:
    531
    Likes:
    282
    Massachusetts
    From someone posting on PatientsLikeMe Today:

    This is way cool! This is a summary of the tweets. Q&A are going on now via Skype.

    Presentation at LDN 2010 Conference in Glasgow 4/25/2010 @ 2PM

    Jarred Younger PhD, Rebecca McCue BS, Sean Mackey, MD, PhD - Fibromyalgia and Low Dose Naltrexone

    LDN Now Preliminary results on LDN for FM funded by Jim and Connie Binns and AFSA

    5% US women, 9 women to 1 man diagnosed with fibromyalgia

    Muscular pain, fatigue and insomnia are main symptoms as are joint pain and headaches.

    Diagnosis of FM = 18 tender points, 11 are painful

    Microglia cells appear to play a role in F. Produce TNF, IL-6, Nitric Oxide and others In FM microglia perform this role when no illness / hypersensitive to normal situations in body.

    When ill with flu, microglia cells are what produce ill feeling, tiredness and need to go to bed - useful for illness. Theory -LDN binds to hyper-sensitive receptors on microglia.

    No existing drug modulates microglia but compounds exist which can do this. NIH research on this. No existing drug modulates microglia but compounds exist which can do this. NIH research on this. See Linda Watkins research on microglia and LDN and FM.

    New study - 30 women, mean age 43, no opiods, at least 6/10 on pain scale.

    15% reduction in pain from placebo, additional 15% reduction when they started LDN.

    30% who had no improvement - consistent with first study. 70% of FM patients had improvement, 50% much or very much improved on LDN (50%-75% pain reduced)

    It seems that improvement persists to some extent even after LDN withdrawn.

    One person dropped out of study and 1 person reduced from 4.5 to 3mg and did well on that.

    Vivid dreams side-effect - 20% on placebo, 47% on LDN. Seldom disturbing dreams and tends to fade.

    LDN tolerability = 89%, same as placebo in this FM study. So well very tolerated

    Next steps - Further analyses, long-term safety, mechanistic proof, optimization

    Researchers looking at levo-naltrexone and dextro-naltrexone (Left and Right parts of molecule) to optimize. (In my opinion this means looking at ways to create a new drug that is more effective, changing a molecule will make it a new drug that can be patented to perhaps work for the 30% that LDN does not help)
  10. JT1024

    JT1024 Senior Member

    Messages:
    531
    Likes:
    282
    Massachusetts
    Also from PatientsLikeMe:

    Q&A summary of tweets

    LDN out of system in 18 hours" "Could be that effect is longer lasting" (Slow return of symptoms)

    Study ties in with clinical experience (my translation - doctors are seeing the same positive outcomes in clinical practices)

    Talk of Levo/Dextro Naltrexone suggests pharma could make money out of new naltrexon -derived drug (my translation - a new drug may be developed by changing some molecules that will be even more effective, but also more expensive)

    Dextro-Naltrexone appears to be anti-inflammatory but not opiate receptor blocking (my take - one of the molecules in LDN does not block opiate receptors)

    Dosage was given 1 hour before retiring, 1 or 2 subjects took during day due to sleep problems. Dr Jarred Younger - FM fatigue data mirrored the fatigue results very closely.

    Process of licensing levo and dextro naltrexone will take 'years'(this is the new drug, specific for FM that may come from their findings.

    Next presentation is on FM/CFS.

    My analysis.... LDN works for 70% of people with FM, as it exists today. Reduces pain and fatigue, minimal side effects. Some people have pleasant dreams, but that should happen anyway. Scientists will work on changing a few molucles in naltrexone to get a drug that targets more patients with FM.
  11. JT1024

    JT1024 Senior Member

    Messages:
    531
    Likes:
    282
    Massachusetts
    More tweets here:

    @tomgilhooly #lowdosenaltrexone momentum from patients 'unstopable' #bigonldn2010
    about 4 hours ago via web

    2nd European #lowdosenaltrexone conference coming to and end. Thanks for reading the coverage and see you again next year. #bigonldn2010
    about 4 hours ago via web

    @fuwoyips EU #lowdosenaltrexone conference coverage at #bigonldn2010 hashtag
    about 4 hours ago via web in reply to fuwoyips
    nobleday

    @LDNNow SAM-e is another useful suppliment.
    about 4 hours ago via Twitterrific in reply to LDNNow
    Retweeted by LDNNow

    @nobleday @kevbevw Anyone who's missed the EU #lowdosenaltrexone conference coverage, the hastag is - #bigonldn2010
    about 4 hours ago via web in reply to nobleday

    #CCSVI ultimate aim is to get procedure on the NHS in UK but need data #bigonldn2010 @tomgilhooly
    about 4 hours ago via web

    #CCSVI procedure from @tomgilhooly will be cheaper than going to Poland for treatment. #bigonldn2010
    about 4 hours ago via web

    #CCSVI treatment very over-subscribed, a waiting list is going to be created. @tomgilhooly #bigonldn2010
    about 4 hours ago via web

    #CCSVI risks - new condition but treatment procedure is not a new one, proven. #bigonldn2010 @tomgilhooly
    about 4 hours ago via web

    #CCSVI risks - greatest with stent + blood thinners but still low. #bigonldn2010 @tomgilhooly
    about 4 hours ago via web

    #CCSVI - new condition ; Co-exists with #MS Treatment complements #lowdosenaltrexone #bigonldn2010 @tomgilhooly
    about 4 hours ago via web

    #CCSVI - larger group of patients interested than in #lowdosenaltrexone #bigonldn2010
    about 4 hours ago via web

    #MS nutrition recommendations - Omega 3, Vitamin D, dairy-free, Inosine (Cut down Omega 6) #bigonldn2010 @tomgilhooly
    about 4 hours ago via web

    #lowdosenaltrexone immune modulator #CCSVI reduce immune stimulation. Nutrition important too. #bigonldn @tomgilhooly
    about 4 hours ago via web

    #CCSVI and #lowdosenaltrexone - CCSVI is a distinct condition. Iron deposit, blood/brain barrier breakdown. #bigonldn2010
    about 4 hours ago via web

    CT Venogram is chosen imaging method by @tomgilhooly for #CCSVI #bigonldn2010
    about 4 hours ago via web

    A stent is a life-long procedure and complications can be serious - Venous stent can migrate to the heart #CCSVI #bigonldn2010
    about 4 hours ago via web

    Doppler scan better than MRI for visualising #CCSVI #bigonldn2010
    about 4 hours ago via web

    Zivadinov 2010 - 38% patients with single MS episode had CCSVI; 22% of non MS patients CCSVI ; 80% of severe MS patients CCSVI #bigonldn2010
    about 4 hours ago via web

    @rachelcreative Glad you're following and enjoying today. #bigonldn2010
    about 4 hours ago via web in reply to rachelcreative

    Zamboni Dec 2009 65 MS patient, 50% reduction in MRI lesions #CCSVI #bigonldn2010
    about 4 hours ago via web

    Zamboni April 2009 #CCSVI found in 90% of #MS patients studied. #bigonldn2010
    about 4 hours ago via web

    Unlike #lowdosenaltrexone the MS Society in Italy are funding research (UK one isn't) and researchers are engaged. #bigonldn2010 #CCSVI
    about 4 hours ago via web

    Zivadino et al - Amount of iron deposits related to severity of MS, April 2010 #CCSVI #bigonldn2010
    about 4 hours ago via web

    Iron Deposition in brain seen in dementia/Parkinson's and MS also in scans. #bigonldn2010 #CCSVI
    about 4 hours ago via web

    @tomgilhooly presenting on CCSVI and #lowdosenaltrexone #bigonldn2010 http://yfrog.com/bavo4j
    about 4 hours ago via Tweetie

    IUoP voted that #CCSVI was new condition #bigonldn2010
    about 4 hours ago via web

    Chronic Cerebrospinal Venous Insufficiency - newly identified venous condition. International Union of Phlebology 2009 #bigonldn2010
    about 4 hours ago via web

    Dr Tom believes CCSVI may feed into fibromyalgia and CFS/MS too #bigonldn2010 #lowdosenaltrexone
    about 4 hours ago via web

    @tomgilhooly now on #CCSVI and #lowdosenaltrexone as complimentary therapies. #bigonldn2010
    about 4 hours ago via web

    Negatives - Memory still less effective and still more stressed than before #lowdosenaltrexoe #CFS/ME
    about 5 hours ago via web

    After 12 years of #CFS/ME on 1.75mg #lowdosenaltrexone recommending anyone try it, 'shouting from the rooftops' #bigonldn2010
    about 5 hours ago via web

    Christine on #lowdosenaltrexone - Now active, back to work as normal and much, much improved. Less tired. #bigonldn2010 #CFS/ME
    about 5 hours ago via web

    Don't let @diamondie fool you - she did great!
    about 5 hours ago via web

    Reply Retweet
    Next up - Christine Fowler Chronic Fatigue Syndrome patient. #bigonldn2010 #lowdosenaltrexone
    about 5 hours ago via web

    Maija's book on Amazon - http://bit.ly/coFtLV #bigonldn2010 #lowdosenaltrexone #CFS/ME
    about 5 hours ago via web

    "Don't believe people who say there are no treatments [for CFS/ME]" #bigonldn2010 #lowdosenaltrexone
    about 5 hours ago via web

    #lowdosenaltrexone most effective for #CFS/ME but other drugs can help too. #bigonldn2010
    about 5 hours ago via web

    Patient - Could only walk '50m' now '3Km' Pain killers every day, now 1 every 2 weeks #lowdosenaltrexone #bigonldn2010
    about 5 hours ago via web

    Maija's Dr now treats many of his patients with #lowdosenaltrexone Improvements reported from 50-70% improvement #bigonldn2010
    about 5 hours ago via web
  12. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Thanks for all of that JT - good stuff.

    Tweets are hard to follow but I picked out one which was interesting
    .

    I think as some of us have had a hard time with initially taking LDN that the liver needs to be supported (as someone else wrote on this thread - sorry forgotten who but thank you).

    Sam-E supports the liver & also moods which just about sums me up so it jogged me into re-starting Sam-E.

    I hope someone from here managed to attend the conference and is able to write about it.

    Thanks again
    Diva
  13. Cloud

    Cloud Guest

    Nothing makes me feel as good as SAMe.....but only for 2-3 days, then I get really toxic (regardless of the dose). But then I do this with many drugs and supplements which indicates a partial methylation block. I've been working on improving methylation and will start SAMe again soon. It's great stuff for many purposes. My brain loves it.
  14. Diva55

    Diva55 Member

    Messages:
    164
    Likes:
    3
    UK
    Hi Cloud
    When I first started the Methylation Protocol I tried Sam-E as recommended by Rich and had a very hard time with it so had to stop it.
    I tried again after a few months and again couldn't tolerate it. Made me feel very sick.

    I tried again some months on and this time I found I could tolerate it!

    I only persisted as I'd read such good things about it and I had a supply. I also could not tolerate Milk Thistle but Sam-E does more than support the liver and so complimented the Methylation protocol.

    Strange how our tolerances do change. Whether it will change back I don't know - it's all a mystery, isn't it!

    I've just started back into the Methylation Protocol (Rich's original version not to be confused with Fredd) as I'd stopped to monitor the introduction of LDN.

    I'm hoping Sam-E will help support both Methylation & LDN.
  15. Jenny

    Jenny Senior Member

    Messages:
    1,223
    Likes:
    172
    London
    A quick update from me -

    Went on hols to France and got very ill again on day 2 so had to spend most of the rest of what turned out to be two and a half weeks in bed. Luckily (!) our flight was cancelled because of the ash and we had to return by car and Eurostar a few days later. I say luckily as I was feeling so ill on the day we should have flown that I don't know how I would have made it.

    I stopped the LDN in the hope that I'd feel a bit better for the journey back and out of desperation took some immpower (AHCC). After two days I had violent diarrhea, instantly felt better and managed the journey quite well.

    I'm back on 1.5 mg now and gradually getting worse again, but will try to stick it out.

    Just about the only good thing about the trip was getting 200 isoprinosine tabs for 45 over the counter. (That's next on my list to try.)

    Jenny
  16. Cloud

    Cloud Guest

    Hi Diva, Very similar experiences which helps confirm some things for me. And you right about how we change over time with our responses to meds, herbs, everything. I take things today that I could not tolerate a few years ago and visa versa. For the most part, I have become less sensitive to things, but Milk Thistle is one I can no longer tolerate. And Obviously, I am still sensitive to LDN.
    I'm glad you repeated the attempts with SAMe because your improved tolerance shows improvements with methylation (from what I understand). I'll give it a few more months before I try again. I'm on IM Hydroxycobalamin (3-4 times a week), FolaPro, and Dr Kunin's Ola Loa vitamins (for methylation). I did not have the ultra sensitive reaction to FolaPro like many report....I've actually noticed improvements.
  17. Cloud

    Cloud Guest

    Jenny, sorry to hear about your crash, but glad the timing was right to accomodate your need to be immobile. I too will stop certain supplements when i crash like that to better determine the cause. LDN seems to be very touchy stuff. Lots of talk in this thread about "Low & Slow". I reacted horribly to the stuff (at 1.5mg), and haven't got the nerve back to try it again yet.
    Interesting to see AHCC resurfacing. I took that years ago when it first came out. Got it from a great Mushroom farm and manufacturer in Oregon. I was into all kinds of Immune support stuff back then but I really don't remember what AHCC did or didn't do for me. Do you notice a benefit with AHCC? I may try the Inosine soon too. There is small amounts in the Monolaurin I take.

    hugsss
  18. Jenny

    Jenny Senior Member

    Messages:
    1,223
    Likes:
    172
    London
    SAM-e is one of the few things that seems to help me too. I've tried it 3 times and each time improved. Run out now but just ordered some more.

    Other methylation supps that I took for 2 years (simplified Yasko) have had no effect.

    Jenny
  19. Jenny

    Jenny Senior Member

    Messages:
    1,223
    Likes:
    172
    London
    Hi Cloud

    I only took 3 tabs of AHCC - 2 the first day and 1 the second. I stopped after taking the last dose as I had begun to feel so much worse my husband had to keep asking if I was still conscious!

    But in the evening I suddenly had the diarrhea and got dramatic improvement immediately - this lasted for 2 days. Don't know of course whether it was the AHCC, stopping the LDN, or just a fluctuation in the illness (which I get a lot). But I was helped many years ago by Chinese herbs which contained mushrooms and others on this board find mushroom extracts helpful. They can be very powerful though.

    Jenny
  20. SaraM

    SaraM Senior Member

    Messages:
    501
    Likes:
    18
    I recently started taking 0.5 mg of LDN again which helped a lot with pain, but it makes me very sleepy and tired. The time of taking it and the dosage does not make a difference at all. I guess like some folks here I am sensitive to LDN ,too.

See more popular forum discussions.

Share This Page