I take 2.6ml of LDN each night and 2.6ml each morning for ME/CFS. It definately helps me. It is not a miracle cure and I am not 100% but it does give me a significant improvement. This is a summary of the information I have about LDN so far.
I started LDN in December 2009 but it took a while to find the right dose.
My sleep is more sound and deep, my brain /cognitive function is better, my energy levels and stamina have improved slightly, my recovery from exertions is better. When I overdo it I still get wiped but I don’t think it’s as bad as it would be without the LDN.
But some experts recommend that people with ME/CFS take it in the mornings as they have poor sleep already and LDN can disrupt sleep. I tried taking it in the morning and it made me a spaced out and made my symptoms worse. For me it helps me sleep, both getting off to sleep and with the quality of sleep I get.
I have tried higher doses but it has not agreed with me. I started on 3ml which made me feel quite ill and brought a lot of symptoms back.
With LDN a higher dose doesn’t necessarily mean better results.
The guidance on starting LDN and adjusting the dosage I have had is:
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.
The 2.5ml dose has been optimum for me. If I try to go to 3ml I start to feel very nauseous after a few days. It’s a tiny increase in dose but doesn’t seem to agree with me – bringing back my ME symptoms.
Here’s how I got hold of LDN for ME/CFS:
My GP is supportive of my ME but her practice would not allow her to prescribe LDN for ME/CFS on the NHS due to ‘lack of evidence’. There may never be a lot of evidence as it’s a cheap drug to make so big pharma companies aren’t too interested in funding trials.
Unfortunately unless you have a GP or a specialist who is willing to write a letter confirming your diagnosis and saying they are happy for you to try LDN the following method is not going to work for you. There are other ways so see the links at the end for further info.
- I contacted www.e-med.co.uk to tell them I was interested in trying LDN for ME/CFS.
- They emailed me back to say they would need a letter from my regular treating physician (eg consultant or GP) confirming my diagnosis and stating that they are happy for me to try LDN. (I know this will be a sticking point for some people wishing to try LDN).
- I spoke to my Lovely GP on the phone who was happy to write a letter in which she gave my diagnosis as Chronic Fatigue Syndrome (CFS), said she was happy for me to try LDN, explained why she wasn’t able to precribe it for me (because she’s not allowed by her practice) and that this was due to a lack of evidence of it’s use with CFS. It took about a week to get the letter.
- I scanned the letter and emailed it to e-med.
- I registered with e-med (cost £20 for a year) filling out a short registration form where I was able to briefly explain my health problems. Within a few hours I had my PIN and password by email.
- I was then able to fill out the online LDN prescription request form. That was in the evening outside of normal working hours but within a few working hours of the next day they had confirmed my prescription. You can ask e-med on the form to send you the paper prescription, send it to a pharmacy of your choice or they will be send it to Dickson’s Pharmacy in Glasgow who specialise in LDN prescriptions.
- I requested the prescription be sent direct to Dickson’s Pharmacy who are able to supply LDN mail order for around
£15£17.50 a month for liquid or £27 (now more in 2011) a month for capsules. Be careful if you choose to use a local pharmacy – best to ask them to check the cost first as often it can be much more expensive.
When I need a repeat prescription I fill in the online form using my membership details on e-med’s site. The prescription covers 3 months and costs £15 which is automatically paid for off my credit card.
I request on the form that the prescription be sent to Dickson’s Pharmacy. They send a new bottle of LDN by registered post once they get the repeat prescription, then 4 weeks later and 4 weeks after that. I’ve given permission for them to hold my credit card details on record so the LDN is paid for automatically when they dispatch it and it costs me £17.50 a bottle.
With the yearly membership of e-med, the prescription cost and the cost for each bottle of LDN it works out as £22.70 a month over the course of a year.
You can also access LDN through www.prescribe4me.co.uk – I understand they will do a consultation with you that may mean you do not need your own doctor or specialist support to start taking LDN.
LDN Information Links and Resources
If you want to read up some more about LDN here’s some of the sites and resources I’ve used:
- Fact sheet about LDN and MS given to me by my prescribing doctor http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/651
- What is LDN http://www.ldnresearchtrust.org/_ldnresearch/static/what_is_ldn_.asp
- Really useful forums from LDN Research Trust which seems to be UK focused http://forum.ldnresearchtrust.org and their Twitter http://twitter.com/LDNRTrust
- Personal experience from Sue http://livewithcfs.blogspot.com/2008/04/low-dose-naltrexone-treatment-for-cfs.html
- Personal experience http://www.users.on.net/~julian.robinson/cfs/naltrexone.htm
- Second the last paragraph http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2858 and here http://glasgowldn2009.com/2009/02/ldn-dose-timing/
Campaigning for LDN
- http://www.ldnnow.co.uk/ and their Twitter http://twitter.com/LD_Naltrexone
And here’s a dictionary entry that gives a sound file on how to pronounce Naltrexone http://dictionary.reference.com/browse/naltrexone
UPDATE 15 August 2011: I’ve updated the dose and prices in this blog post. I’ve been taking 2.5ml nightly since Dec 2009 and I have seen a significant improvement. It is not a cure, I am not back to a normal life but it has given me some relief and is worth it. I have more energy, I recover from exertions quicker, my communication and cognitive function is greatly improved, my sleep is better (deep and sound). For the first 6 months I felt a lot brighter and like I had more energy but my body struggled to keep up with the energy I thought I had. Slowly my routine changed and I became able to do a little bit more. It is hard to quantify the improvement which for many healthy people might seem inadequate but LDN has been the one thing that has offered routine improvement and slowly I am getting stronger. It does not make me immune from crashes, overdoing it or flares with things like a virus – I have had a couple of setbacks. But recovery has been easier and I am soo back to enjoying better levels of heath and ability than I was before LDN.
I continue to get my LDN in liquid form from Dickson’s who have been very good. I had to have a break from LDN while I took strong painkillers for a back problem around May 2011 and that let me see just what difference LDN makes to my condition. I wouldn’t want to be without it.
UPDATE 16 January 2012: I’ve updated the doses in this post. I’ve been taking LDN in the mornings as well since Dec 2011. Currently at 2ml each morning and 2.5ml each night. I’m not able yet to quantify if that is helping but I’m not getting any side effects. I have just had a cold/virus which lasted for 3 weeks but for my husband lasted 3 days. However in the past a virus like this has lasted for 3 months so maybe there is some immune strengthening. It’s hard to know. I continue however to feel the benefits previously described. I’m looking to increase my dosage once I can get my GP to write a supporting letter for me as e-med will only prescribe up to 4.5ml daily without a letter from your doctor.
UPDATE 19 February 2013: I have been double dosing for a year and my current dosage is 2.6mls morning and night. Over the last year I have focused on trying to maximise the on the improvement LDN has given me. I am stronger and able to do a lot more (relatively). My ability to recover from exertions is better as well as being able to exert myself more, and push myself a little knowing I can recover better. I still have to have rest days and plan activities but these can occur more frequently and doing more. My suspected OI problems limit intensity and I think without treatment for that I’ll struggle to do anything that gets my heart really beating. After doing regular exercise my heart rate at harder levels of exercise has not improved at all which adds to my theory that there is an element of OI at work. But there’s no denying that the LDN has given me a significant and very good increase in function if within limits. All my symptoms except for IBS are better. I can still crash and when I overdo it symptoms come back quickly. But day to day LDN have given me much more life to enjoy.