LDN, Abilify, Infrared Sauna and more

gretch

Morning all, I hope the day has begun as gently as possible or there are at least some roses amongst the thorns in the coming days. I had to have twilight anaesthetic last week and it seems to have affected me a lot more than last time. I’ve been doing all the regular recovery management things but I’m wondering if anyone has any post anaesthetic strategies. Read a few articles but the main focus was on talking through some options and risk factors with the anaesthesiologist. Which wasn’t a possibility for me, twice now, I’ve been on the day procedure assembly line and asked by the anaesthesiologist “What is ME/CFS?” Right before they are about to put me under. (Unfortunately as others have said its not an uncommon response.)

Might just be a case of being impatient to get to the other side of this but thought I might crowd source some pre or post strategies in case there is way to reduce the impact for anyone who has procedures or surgery coming up.

Christine

Has anyone else tried high intensity Pulsed ElectroMagnetic Field therapy? I started PEMF about three weeks ago, and have been feeling very unwell since due to detoxing. I don’t know whether or how much I will improve as a result of this treatment.

Gerty

@Christine hello Christine I tried PEMF when I was more mobile, I found it relaxing which was helpful at the time but I cannot recall any changes for me personally.

Christine

@Gerty Thank you. Was that low intensity PEMF where you lie on the mat, or high intensity PEMF where where you use coils of wire and the muscles contract?

Gerty

@Christine it must have been low intensity because it was on a mat on a recliner chair. I didn't realise there was the high intensity one though sorry now ive just realised, sounds more powerful?

Christine

@Gerty Yes the high intensity PEMF is able to go deeper into the tissues, so it can be more effective.

Christine

@Christine The low intensity PEMF is like watering with a dripper system compared to high intensity which is more like using a firehose! However the high intensity is safe, as only the cells which need help have charge induced in them by the pulsing magnetic field.

Gerty

@Christine keep us posted on how you go with it

Christine

@Gerty Yes certainly, however I expect it may take months yet before I get any real improvement.

Daffy_Dave

The good @Looch mentioned this in the thread on overarching approaches to managing ME/CFS, and I thought it'd be worth it having its own thread. There is growing science to support LDN as a treatment (but generally not cure) for ME/CFS (research done by the NCNED in Queensland comes to mind, but I think there is some other work as well).

However, from what I've seen, it doesn't help everyone, and even those it does help often have some 'adjustment' to it. So, for example, people might gradually increase their dose (by .25 to 1mg) every couple of weeks, and might feel a bit rough after increasing their dose (and some people can feel very rough - sometimes when this has been the case they've reduced the increment at which they increased their dose).

I'm on it myself, and the benefits I've had have mainly been improved cognitive performance at a given level of capacity, rather than improving baseline capacity. It's quite noticeable though, and very welcome. There was also a temporary reduction in pain for a while, but I find my body gets desensitized to any pain reduction medication I take all the time, and thus it was with this one as well. There may be a bit of an improvement in recovery from PEM as well, but testing this carefully isn't something that is easy or pleasant to do, so file that under "anecdotal and possible but not definite". The dose I'm on is 4mg a day.

How have other people found LDN? Have people found any interesting studies or papers on it?

Katt

@Daffy_Dave Good idea starting a thread on this Apart from the Griffith Uni study, the other ones I know of are a retrospective study in Finland with 218 patients titled "Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)" (Polo et al., 2019, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2019.1692770) as well as a case study from the UK in the paper "Low-dose naltrexone as a treatment for chronic fatigue syndrome" (Bolton MJ, et al. BMJ Case Rep 2020;13:e232502. doi:10.1136/bcr-2019-232502). Both are very small though making it hard to make any strong conclusions about LDN quite yet.

On a personal level I am also on LDN. I was lucky enough to have minimal side effects and seem to tolerate it quite well though it also seems to have minimal benefit for me. It does do something as I tried stopping it recently and think I started to feel worse so started again but the effects are definitely not ground shattering and if I had had side-effects I doubt it would have been worth it for me.

Interested to hear what other peoples experiences have been.

gretch

@Katt and @Daffy_Dave thanks for sharing. I’ve been wondering about people’s experience with LDN since I saw the research article. So hard to weight up risk/benefits ratio of trying something new.

dejarik

My experience was similar to Katt’s. I was on 4mg and then 6mg for a while, and while I think there may have been a little benefit it wasn’t enough of a difference to be worthwhile. I also had side effects when increasing and decreasing.

hayden

I know of someone who recovered from CFS after being housebound/bed bound for a couple of years. They believe infrared saunas might have helped. Has anyone here had any experiences they could share? I haven't tried them yet myself, been meaning to for a while, but I tend to burn up when I'm at my worst, so I'm not sure they will be great. I've tried normal saunas but they leave me feeling drained.

Royal Flash

@Daffy_Dave Did try LDN for a while about five years ago. Found some cognitive improvement early on but that was about it, was expensive and the GP wasn't keen on me using it because of the way it worked.
Have had some results with Plaquenil, Sertraline and Lyrica though.

Looch

@dejarik Can you tell me what side affects you had? I’m one week into taking LDN.

Royal Flash

One of the integrated physicians I saw suggested having a hair analysis performed. I was extremely sceptical but agreed as it was relatively inexpensive ($140) and harmless.

The results suprised me as the report indicated elevated levels of several elements which was exactly what I would have expected to see based on my history ....concluding that it was possibly more accurate than what I thought.

The report also indicated very low levels of other important elements. In some cases levels approaching zero.
This presented the opportunity to target those deficiencies as required and hopefully improve the base-line or at least remove one area of contributing factors.

sez

@Daffy_Dave I have tried LDN, I think I was on 9mg. I found improvement at first but it started to wane. My big breakthrough is spironolactone, I have had no pain since going on it.

dejarik

@Looch In my diary I’ve got that I felt sick, had headaches, light sensitivity, stomach pain, restlessness and lower energy. I was taking another medication for some of it, though, so some may have been related to that; and it wasn’t my long term experience, just when increasing/decreasing. On another note, as a result of poor planning I went straight from 4mg to nothing; I felt terrible for about three weeks before starting to feel better.

Looch

@dejarik Thank you for checking that. I have just increased from 1.5mg to 3mg, 2 weeks on 3mg then up to 4.5mg. Felt better the first week but more tired this week, will give it a few months and see. As you said, there are so many other factors it is often difficult to tell. The Professor I saw said that 70% of his ME/CFS patients had improvement on it so we will see .