Medication is available

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So many people repeatedly ask about medication for ME/CFS that I decided to open a topic on what I know.

Low-dose naltrexone (LDN) is becoming the most used medication for CFS in Finland and Norway, though it’s not widely recognized among doctors. Yet my doctor tells me about 90 % of his patients benefit significantly, and that’s also my experience from fellow users.

The exact benefit varies between users, because there are hardly patients with exactly the same symptoms to start with. In my case it took several months to see how it helps, but when I occasionally forgot to take the pill, I got a sore throat and often low fever on the same day. Others have reported relief in exhaustion and brain fog. It may take time to find the correct dosage though. If you start with 1.5 mg and then move to 3.0 mg, you may have to go back down to 1.5 mg or even lower.

NOTE! LDN is not the same as naltrexone. LDN’s dosage and uses are completely different. Google ”Dickson Chemist LDN” to find an LDN fact sheet. Because of the low dose, LDN is usually well tolerated. Sleeplessness was the only side effect when I started, but it was quite bad for a while.

There is also a nutrient that has helped me immensely, even more than LDN, namely D-ribose (a building block of ATP). Ribose has radically reduced my post-exertional malaise, but I need to take 10 – 15 g/day. The easiest way to take this amount is powder mixed in water.

Note: I am not a doctor and I don’t sell these products. What I am is very apalled about how little doctors know about stuff that will help most of us and that’s quite easily available.

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12 Replies

  • Posted

    Hi Avocado,

    Which of your specific symptoms has LDN helped relieve?

    Thank you,

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  • Posted

    Hi,

    it relieved my constantly sore throat and low fever. Also I haven't been feeling dizzy for a long while.

    If anyone wants to explore more about medication, there is a book called "Reviving the broken marionette" on treatments (=medication) for CFS and fibromyalgia.

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  • Posted

    Thank you Avacado,

    How long did it take for you to see positive effects from the LDN?

    Cheers,

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  • Posted

    Yes - id like to know that also...

    You said also that your doctor recommends this for you - is this your regular GP? Man i need to find a different GP i think

    Wonder what would happen if i mentioned this the the consultant at the CFS clinic?

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  • Posted

    Well, it took several months before I REALISED the positive effects - only when I forgot to take the medicine and found out what happened. But there was an immediate effect lasting for a few days immediately after I started with LDN: I was much more energetic, but also sleeping much worse, so these two effects pretty soon overrode each other. I think my starting dose, 3.0 mg, was too much for me, so at some point I reduced it to 1.5 mg.

    It was not a regular GP but a CFS specialist who recommended this medication. GPs are clueless.

    I suspect that if you mention LDN to a consultant at a CFS clinic, they close their eyes on it. So do many specialists in Finland too, and they claim the only correct treatment for CFS is CBT or GET. But they never tried LDN on their patients! Yet they know better than those who did!

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  • Posted

    Have you noticed any improvement in dysautonomia from the LDN?
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  • Posted

    I am looking around for someone who can prescribe things like this for me....Wish there was some clinical trial where we can try things like this

    Im on Ribose too...DN one, i take 10 - 15mg a day also...im not sure if it helps me or not...i feel just the same...i havent tried exercise for a long time though so I wonder if it will help my post malaise, it is also meant to reduce fibro tender point pain

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  • Posted

    okay through Dickson website i have found some relatively cheap consultations you can get to obtain this medicine, i am currently in process of getting this, however I noticed it said in the disclaimer that LDN can cause hyperthyroid symptoms in patients and should be avoided by thyroid disease...I am currently waiting for full TSH T3 and T4 blood tests to come back as I get a lot of hyperthyroid like issues

    So if i am ok - i might go ahead with this...Im actually quite excited...Thanks Avacado, it can't hurt but try these things...have these meds and D-ribose given you your life back would you say?

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  • Posted

    Unfortunately I don't live in the UK, so I don't know any CFS specialists there. But there must be a few, because LDN is also known in the UK. Don't know exactly what is meant by dysautonomia - aren't almost all related to that? I was a relatively mild CFS case, for example I did not have considerable braing fogs etc., so I can't report improvement in those.

    Not sure if I can say LDN and D-ribose gave me my life back - I'm still hesitant to do any serious sports or even cycle for groceries, but I can say for sure that I wouldn't be able to work without them. I also know that many people have experienced more dramatic improvements, and they are not just sporadic cases. Also, usually the effects can be felt in a couple of weeks' time, but if you get side effects, it may take longer for the situation to stabilize and the benefits to become substantial.

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  • Posted

    Hi avacado

    Sorry - i assumed you were UK...Whereabouts are you?

    I dont think i could ever do any serious sports anyway, but just to be able to return to work 2 - 3 days a week or be able to walk around a theme park would be nice - they are the sort of things that would help me get my life back

    Ok - i will wait to see the thyroid results / talk to my gp and then get it through Dicksons, its worth a try at least - thanks for helping with this

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  • Posted

    Hi Jacquie, I'm in Finland. Any progress with you?
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