LDN – It Helps To Read The Instructions

When I ordered my repeat (3 monthly) prescription for LDN I saw a notice on the order form telling you exactly how to find the right dosage. 

I don’t remember seeing it before and was following the guidance on the external info sheet they linked to.  Maybe this is proof that the LDN is helping as I actually noticed the instructions this time!

The introductory dose is 1.5 mg of liquid LDN for the first 2 weeks of treatment, increasing by 0.5 mg every 2 weeks until the individual find the
dose that suits them best.  If there is an increase in symptoms when taking a higher dose, it might indicate that this dose is too high.  Lower the
dose, and improvements should become apparent. The maximum dose is 4.5 mg which most people find effective and stay on that daily for maintenance.

Now that’s pretty straight forward! Oh dear me. I blame the brain fog.

So I could try going up 0.5ml to 2.5ml in a couple of weeks if I want to. We’ll see.

By the way the 2ml has been agreeing with me and although I’m finding it very difficult to quanitify any effects of LDN I do have the feeling that it’s helping.

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11 Responses to “LDN – It Helps To Read The Instructions”


  1. 1 Jozephine February 10, 2010 at 11:13 am

    I get that as well, miss important info – a CFS moment. I call it a CRAFT moment – Can’t Remember a Flipping Thing.

    It seems as if this is helping. What does it do exactly? (I’ll google it, don’t waste energy replying). I’m following your experiment closely. Thank you so much for being a guinea pig!

    • 2 rachelcreative February 10, 2010 at 6:26 pm

      For me, although it’s a bit early to say it seems to be making most days feel quite like a “better” day, not great, but better.

      It’s helping me sleep, deeply. That’s something I can say for definate.

      I think it’s also topping up my pain relief and therefore my migraines and neck/shoulder pain. I think it’s giving me a little more energy. I think it’s helping a little with my IBS. But these, along with most days feeling like better days, are the bits that are hard to quantify.

      http://www.fiikus.net/?ldn

      “What LDN does depends on the illness being treated. In most autoimmune diseases the disease progression halts and symptoms, especially fatigue but also pain, muscle weakness and cognitive problems are alleviated. …

      LDN does not work for everyone, but it is extremely effective in autoimmune disease and HIV/AIDS. It is somewhat less effective for chronic Lyme and Bihari has reported that some 50% of patients with CFS/ME are helped by the drug (the number appears to be bigger for fibromyalgia). I do not have any numbers for other conditions.”

      http://www.users.on.net/~julian.robinson/cfs/naltrexone.htm

      http://www.ldn-resources.com/cfs.html

      • 3 Jozephine February 10, 2010 at 7:35 pm

        Thanks for this. I’m seriously considering following your path.

        • 4 rachelcreative February 11, 2010 at 1:09 pm

          Well I have to thank Diamondie’s site, Sue’s blog and the LDN Research Trust for getting me switched onm to try it. It’s not like I am overnight cured but even a small change is very much celebrated here!

      • 5 ashysheela February 11, 2010 at 11:15 am

        those things could all do with some improvement for me – maybe i will ask about it next trip to the hospital POTS woman and see what she thinks. I have a feeling she doesn’t want me trying other things while i am on Midodrine, but i could be wrong.

        • 6 rachelcreative February 11, 2010 at 1:04 pm

          My GP was happy for me to try as there’s no danger of lasting side effects and it’s the contraindications with other medications is a short list which din’t apply.

          But maybe the specialist wants to be able to monitor efficacy of Midodrine without muddling the results with other drugs. Although you have been on it a while.

          Anyway if your specialist was supportive but reluctant to prscribe it herself off licence ask for a whom it may concern letter confirming diagnosis of ME/CFS and stating she’s happy for you to try. Then you’ll be able to get it through e-med if you want to try it.

  2. 7 ashysheela February 10, 2010 at 3:23 pm

    if you feel it is helping, it probably is. It’s so hard to quantify these things and be sure though eh? I am sure it will be clearer long term. Good luck with the 2.5 when you get there!

  3. 9 Sue February 10, 2010 at 10:12 pm

    If it’s making you feel better, that’s all that matters! So glad to hear you’re still feeling good.

    For people looking for info on how LDN works, the best source is http://www.lowdosenaltrexone.org

    I just wrote a post on LDN today, too!

    Sue

  4. 11 Stephanie Kiesewetter November 9, 2012 at 6:41 pm

    Getting ready to start it tonight. I am on the way to supposedly trying tybri ( wish me luck as I am JCpositive.) had quite a bad relapse in September, hit me hard… And surprised the poop out of me as I was only diagnosed in May and never had any symptoms before the double vision came on that led to the diagnosis… I now wonder if the back pain I had been getting the four years prior, not to mention rapid weight loss (from a 12 to a 2 in 4 months, without really trying, beyond quitting drinking and doing Pilates in the beginning). But I was super active, and considered one of the strongest
    Girls when it came to my retail job. Even right up to the day before the relapse hit me, I had a customer comment that she had never seen anyone move around a store so fast, I wanted to comment, “not bad for having MS.” Any how, having my walking, hand use and vision more or less being taken away from me (things are coming back, I can typ e and walk now…) I am willing to try most any thing. My LDN came today, 3 mg with no instructions, so I am searching the net for more info. Hopefully something helps and woks before I start the tysabri, so that I can go back to th much safer copaxone and wait for once of these safer but stoner drugs to get approved. Many high hopes for the LDN… I would love to be back at work in some capacity before Christmas… And have enough activi Ty to fight both the boredom and constipation. Largely what I can do now is smoke (.i know, a big no, no with MS, but even my doctors aretn’t majorly worri Ed about it, they tell me just to cut back, much of my progresss is personally measured in how I hold the cigarette, like today I discovered I could hold it properly in my left hand) and typing long rambling posts various plalces. Wish me luck with the LDN.


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