LDN, Abilify, Infrared Sauna and more
@coco I hope the LDN goes well and is beneficial for you. Keeping a diary/journal is a great idea. Make a note of how you are feeling, maybe give yourself a 1-10 rating.
I wanted to share my experience with LDN. I've been on it for about 9 months now and feel like there is benefit. I'm on 4.5mg now - the top dose - after a gradual incline.
I didn't have too many side-effects. I did find it made my body want to move. My legs and muscles felt twitchy. This is great as someone with CFS, but it also was hard as I can only do limited exercise. I felt really restless in this time. It took a few months for these sensations and ability to start to feel more aligned.
I am now able to go for a walk most days with no ill effects, so that's a win.
Wondering if anyone else had that feeling at all? Has anyone been able to progress to more exercise each day by using LDN?
@sarahv I'm so happy to hear of your improvement! yay for the win!
@Daffy_Dave I tried LDN and found it exactly like you.
Great to hear @sez
@coco Sorry slow reply here, I lost the login details for the forum and haven't had spoons to sort it out. I kept a journal while starting ldn and found it really important. I have a very rubbish memory (brain fog) which was made all the more so by more sick feeling days with side effects. Also it's a really slow process increasing incrementally so I could never remember when i changed dose etc. I just used a notebook and wrote the date and recorded whatever applied on the day:
-side effects or unusual issues
- level of usual ME symptoms (compared to usual),
- pain levels (eg "head exploding" "all the headaches making me nauseated" " agony"),
- which painkillers I took and when and how much,
- what time I took the LDN (some people find it affects sleep patterns) and dose of course,
- sleep disturbances (i dreaded night terrors which i'm prone to anyway),
- time i went to sleep and woke, whether i napped in the day,
- any exceptional activity etc eg going to supermarket which i've rarely been able to do in over a year - this is when I realised LDN might be helping... then crashed!
Sorry that sounds like a long list but it really wasn't too hard. Basically I found it simpler to just freehand it and note what seemed important on each day, rather than having a form or spreadsheet, found it less cognitively demanding than trying to fit things into imposed scales etc. But i expect this is really an individual preference, maybe having a proforma checklist is less demanding for others. At the very least make sure you keep note of dose you take each day. I also found knowing the time of day taken and sleep (or bedbound if not sleep) hours useful.
Hey forum folks!
I didn't know where to put this so I hope this is the right(-ish?) place! If not, feel free, mods, to move it to a better suited spot.
Can any body please direct me to some links/docs/resources for practitioner education/awareness?
I am seeing a psychologist who seems to not really understand MECFS or 'believe it is real'. I'm not a hundred percent sure (but let's be real, we've all been there)...My sense is they may think it is just depression.
Aaaaanyway, in case we have a conversation about it, are there any easy-to-digest but medico-speak-enough literature/links I can direct them to that basically myth bust any of the myths by a credible source?
I found this from the CDC but yeah if there is anything that I could use to say 'if you'd like more information from such and such institutions/credible organisations/bodies etc.... check such and such out" - to just fully bust those myths out of the water if you know what I mean.
Much gratitude in advance for any support and suggestions Thank you
Oh I found this on the CDC website in case anyone is looking for some help with the journaling side of things too.
@blanketfort Thank you! !
Best of luck with your psychologist @coco (and nice find on those CDC links - they're solid on PEM and pacing if I recall correctly). In case it helps, here's a link to Emerge's page on practitioner eduction - they've got an accredited GP education module there, and a bunch of good resources linked at the bottom of the page as well (like the 2014 ICC primer):
Lau_EA_Aus last edited by Lau_EA_Aus
Allied health professionals including psychologist can do the Emerge Australia accredited GP education.
Emerge Australia has partnered with ThinkGP to produce a two-part accredited online education series based on best-practice clinical information to assist health professionals to accurately diagnose and support patients with myalgic encephalomyelitis/chronic fatigue syndrome.
So it's been a few months and I still haven't started on LDN but I have recently started doing a bit more research into it and preparing myself mentally.
There's a fb group with loads of info on it as well.
Apparently The filler avicell can cause people problems? Which is weird because the chemist was a fan of it and said it was like the least to cause issues (and the fb group also mentioned that's how many chemists react lol).
Anyway apparently it can also cause thyroid issues in a small percentage of the population. which now has me wondering, because i recently started taking another compounded drug with avicel as the filler AND recently had a bit of a warning bell re one of my thyroid levels. never thought the 2 would be related. i just take for granted that fillers are mostly harmless...
can't really know if they ARE related of course, unless i stop taking the other med/get it with a different filler.
Anyway I'm curious is anyone here has positive/neutral/negative experiences of avicel? if i'm spelling it right?
For those out there who are taking LDN, does it help with insomnia? I’ve tried Melatonin again these past two nights - it does not work!!
@coco You're spelling it the same as my prescription, so I reckon you're on the money. As far as I know it's not knocking me around - I had a bit of a 'bump' every time I upped my dose until I got up to 4mg, but long-term functionality (particularly cognitive performance) with LDN higher, and no noticed reduction. That being said, I'm just one person, and people with ME/CFS tend to be more sensitive to things their bodies disagree with, and all our bodies are different.
@Glimmer I'm afraid I didn't notice any significant improvement in quality of sleep with LDN. I don't get 'insomnia' per se, but I get ridiculously interrupted sleep, and the extent of the interruptions didn't seem to change that much. That said, if you do try it, I hope it helps!
Wow i just read this post again @Siren and its beennsome time, i literally wondered if it was ME that was the original poster as i literally could have written that almost word for word.
Im experiencing some anxiety around this again at the moment.
Mainly because they found ‘subclinical’ thyroid issues in my bloods and pending review testing of course they want to chuck me straight onto meds, rejecting my questions about if diet and lifestyle can have an effect?!
Did you end up finding someone that you feel safe with and that treats you with dignity @Siren ?
river last edited by
I am wondering if anyone else has tried amino acid supplements to aid recovery from PEM?
They are used by athletes for muscle recovery (like a lot of the supplements us MEeps find helpful) but for some reason I hadn't heard about them before. I was inspired to google "amino acid supplementation ME/CFS" after reading the article Simone posted in this thread.
MEpedia lists some study results showing depleted amino acids in people with ME. BCAAs are also listed among the potential aids to PEM recovery on this Health Rising page (I already take several of the other supplements listed there and find they help a bit, in fact, I am able to write this post thanks to having just guzzled a cup of tea with D-Ribose).
My local chemist sells a BCAA supplement that is quite affordable and has no added nasties, so I decided to order some. The label says you can take up to 6 caps a day (which is still considerably less than the 5g recommended in the link above!! yikes) but I've started with just 1 to make sure I don't have any bad reaction. I'll let you all know how it goes.
@river I’ll be interested to hear how it goes as after reading Cort’s latest, and previous mentions of amino acid depletion, I was going to look into them. Thanks for the reminder!
@gretch I'm on 4.5mg LDN per day and have noticed a marked difference in my cognitive function for short periods of time. No real difference in fatigue levels or how long I can manage to work physically or mentally before I need to rest but my brain functions better for that period of time.
I think it's worth talking to your GP about trying LDN and seeing if it helps you, as with most ME/CFS treatments results will vary from person to person.
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