LDN Day 55 – Dosage Experiment

Last time I wrote about LDN I was lowering the dose to 2ml nightly because I suspected the tiredness and low energy reserves I was experiencing were possibly due to the 3ml of LDN.

For the first week at 2ml it agreed with me very well in fact I felt positively perky the first few days. 

Now this period of taking 2ml does coincide with Christmas (tiring) and January (traditionally a poor health month since I’ve had ME/CFS). 

So the week after Christmas, the 2nd  week of 2ml, I didn’t feel the same perky benefits.  But there was a sense that maybe this could lead to better things.  Maybe with time I could increase activity slowly and boost where I am on the ME/CFS scale.

By mid January, still on 2ml, that had settled somewhat.  I wrote in my journal that I didn’t feel bad but I didn’t feel brilliant either.  I was a bit lacklustre. I was unproductive.  Maybe that’s a January thing.  or maybe it’s getting used to the 2ml and needing to increase the dose.

So. As I’m nearly due a new bottle of LDN and have only usedhalf of what I have I thought now was the time to try increasing the dose to try and ascertain if 2ml really is the optimal dose.

So on Day 41, the 15th January I upped the dose to 2.5ml and then 9 days later (this last Monday) I went up to 3ml. 

On Tuesday my IBS wasn’t so good and I got a pre-migraine sort of head.  Wednesday, Thursday and today I have been dancing with a migrainey head, neck/shoulder pain and IBS flaring.  Thursday the IBS got really bad and I was totally wiped needing a PJ day. 

Today, Friday, the neck and shoulder pain is still really bad, the IBS is not so good, the migrainey head is ever present and my gland pain in my neck is back.  This is normally only present on really bad days, after big exertion or before I started taking amitriptyline for pain relief.

As there was no big exertion to have triggered this I am concluding it’s side effects from the 3ml of LDN.

My quandry now is whether to carry on and see if side effects subside after a few weeks – but risk feeling rotten or even more rotten for a few weeks.  Or to lower the dose back to 2ml and accept that’s the optimal dose. Or is it?

With the neck, glands and migraine all I want is to take some co-codomal for some relief but I can’t take that with the LDN.  So I have to find a way to cope (again) with the pain. And the IBS.  Without knowing if it’s worth it. Sigh.

LDN Key Dates

5 Dec 2009 – First LDN bottle arrives

6 Dec 2009 – Day 1: Begin 3ml LDN in morning

9 Dec 2009 – Day 4: Switch to night time dosing of 3ml LDN

17 Dec 2009 – Day 12:  Reduce to 2ml LDN nightly

15 Jan 2010 – Day 41: Dose up to 2.5ml

24 Jan 2010 – Day 50: Dose up to 3ml


11 Responses to “LDN Day 55 – Dosage Experiment”

  1. 2 ashysheela January 29, 2010 at 7:54 pm

    Sounds disappointing – did you have these issues the first time on 3ml? So hard to know how long to persevere… thinking of you.

  2. 3 Sue January 29, 2010 at 11:39 pm

    I had a similar experience – did well at 3 ml, went up to 4.5 mp and all my usual CFS symptoms got much worse, like after a lot of exertion. I stayed at 4.5 ml for 10 days, to give it a good trial – still bad after 10 days, so I went back to 3 ml and have stayed there for 2 years.

    On 3 ml of LDN, I still have some bad periods (like now!), but if I stop the LDN, I feel even worse. So, even though I don’t always feel that great perky feeling I did at the start, I know I;m better off with LDN than without it.

    Just my experience. Hope you get back to perky soon!


  3. 4 Jozephine January 30, 2010 at 9:08 am

    oh poor you. Sounds as if your immune system is reacting. I know nothing about LDN so can’t advise you, just sympathise. Take it easy.

  4. 5 rachelcreative January 30, 2010 at 11:56 am

    Thanks everyone. You’re all so kind.

    Sue thanks (again) for sharing your experience. I’ve been re-reading about LDN and looking at people’s experience on the LDN database (www.ldnnow.com).

    Someone said they got side effects when upping the dose too quickly.

    And your experience Sue is really valuable too.

    I think I’m going to drop back down to 2ml. I realise now that although I felt a bit flat on 2ml in mid January this might have been to do with a combination of post-Christmas, Growler back at work, getting my period and a long spell of cold weather around here.

    So I’ll try 2ml for a while longer and then maybe up to 2.5ml and do that for longer to see.

    Finding your optimal dose takes time huh?

  5. 6 Rachel M January 31, 2010 at 8:18 am

    I hope the bad symptoms settle down quickly…
    I feel your frustration. And I really hope that you can see the benefit clearly soon.

  6. 7 aaron March 3, 2010 at 7:49 am

    perhaps you should try daytime dosing?
    I think that is the normal protocol since the last world conference, and particularly for parients who have cfs.

  7. 9 John Donnelly May 16, 2010 at 1:33 am

    I hope things are working out a bit better for you. I see so many people doing so well on the database and I you join them real soon at http://www.ldndatabase.com
    Best wishes
    John Donnelly

  8. 10 Erin October 22, 2011 at 11:42 am

    Hi there, my mum has just begun 3 weeks ago on the LDN at 1.5mg (she’s 105 pounds) and she had the worst neck pain and swelling and extreme stiffness and headaches! We went down to .5gm and still haven’t gotten any relief, it’s unbearable for her so we had to stop. Did you keep going? So hard to know what to do. Thank you for your help.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
New stuff is added all the time.

%d bloggers like this: