If you’ve read my previous blog post you’ll know that I’ve decided a medicine called LDN is worth a try to help gradually alleviate my ME and Fibromyalgia symptoms. Obtaining it though, required a lot of detective work.
The first thing I needed to do was to wean myself off Tramadol because LDN isn’t compatible with opioid medications. I only took one tablet in the mornings to help me deal with the stiffness and pain on waking (it can take me 3-5 hours to get the pain enough under control in the mornings to be able to get up), and a shoulder injury that gives me jip if I’ve laid on it in the night. Other than an increase in pain which I grew to accept, I did not experience any side effects when coming off Tramadol, and the increase in pain I managed by taking CBD oil for a few days. I gave it several weeks between coming off of Tramadol and starting the LDN, but if in doubt please speak to your own GP as there can be serious consequences of stopping opioid medication.
The way I then obtained the LDN is through a private doctor at Clinic 158. Finding a supplier of the prescription took a lot of online searching, backtracking from dud links and asking for recommendations. Clinic 158 came recommended via their other patients who are a member of an ME Facebook group. But other private doctors and private online doctors also offer LDN. Clinic 158’s service is relatively inexpensive and they will do appointments over the phone which is what I needed as being predominantly housebound and bedridden, I cannot travel. So far my dealings with them have been absolutely fine. After registering online, I completed a questionnaire of health questions, and details of my GP and current meds, and the contact details of the consultant who diagnosed me. This was then followed up by a telephone appointment with the Clinic 158 doc. After discussing things with me he was happy for me to be prescribed LDN. I’ve been started on an extremely low dose with slow incremental increases because I am a severe ME patient and that can make me more susceptible to a relapse or bad side effects as my immune system adjusts to the LDN, or so I have read. Clinic 158 uses a chemist in Glasgow to dispense the medication which was sent to me by post. It came really quickly. As with my previous blog post, I’ll put links below to help any of you wanting to do your own research into how to obtain LDN in the UK – in other countries the system will be different and potentially easier in places like the US (the following link lists where LDN can be prescribed in different countries, not just the UK http://www.ldnresearchtrust.org/LDN_Prescribing_Doctors ) . As always I do recommend you do your own wider research too before making a decision.
For more info, the Clinic 158 website is here
And the chemist’s website is here:
Like a lot of people in the UK, we are used to free healthcare and the idea of going privately is at best bamboozling and at worst petrifying. I have very little money and live to a very strict budget since my health stopped me working two years ago. So the cost of any private healthcare had to be within reach (no Harley Street for me) and had to replace something else in my budget. I decided to give up my home help in order to pay for the medication. This was a big risk: I struggle to look after myself and my home due to exhaustion, weakness and lots of other symptoms that keep me flat on my back most of the day – eating three meals a day plus washing is a luxury I can almost never afford any more, my energy bank can’t cash those cheques all in one day. My home help was not a carer but cleaned my home, took the laundry to the launderette and back, changed the bedding and took the rubbish out every week. For these things to stop would put enormous pressure on me and it was likely I’d spend weeks or months in squalor hoping that the LDN eventually gave me enough strength to do some of these chores myself. But if I don’t take that risk, I’ll never know if LDN could have helped me. So I bit the bullet, did my sums and went for it.
The initial consultation with Clinic 158 cost £35 and this included the first private prescription, which is a 3 month prescription. The cost for the LDN medicine itself is paid to the chemist, and at the time of me doing it was a further £18.50 per month. Apparently after the first three months, if I want to continue with the medicine, I will be charged £25 every three months for the private prescription from Clinic 158. Plus of course the cost of the LDN from the chemist each month.
So it currently works out at £26.83 per month total cost unless my dose increases significantly, in which case the price from the chemist might increase too.
Something positive that has come from spending time exploring all the practical options around a new treatment is that it feels quite empowering. It’s a feeling of taking control and making plans, ensuring every eventuality is considered, acknowledging what the risks are in advance so there are hopefully no surprises. When chronic illness affects you severely, you spend a lot of time relinquishing control – over to your body that won’t move like it should, or won’t sleep or can’t think, and over to other people who you become dependent on to do the basic daily living tasks you used to take for granted. It feels good to regain a modicum of control. What’s also empowering is that it isn’t a passive treatment: I’m not being manhandled by a therapist or being probed by a shrink. It’s a drug I administer to myself and whatever happens I have to maintain self-control so as not to do too much activity, and crash and burn. I’m a right one for getting excited and impatient, so it will take a level of self-discipline to stick to the prescribed dosage and maintain safe rest/activity levels. That in itself will do me good. I’ve just started taking the drug and am in the early stages, but as I’m getting sleepy I’ll post about the experience tomorrow.