LDN, Abilify, Infrared Sauna and more
Topcat last edited by Topcat
@river Potassium supplements do not work in the same way. The body maintains your blood K levels to very fine tolerances for your safety and well being, any excess is excreted through urine and perspiration.
In my situation being low in total body (cellular) K the problem is getting the K returned into the cells. In the 'cellular pump' action of muscle cells for example, contraction replaces the potassium salt in the cell with sodium using the blood as the exchange medium, on relaxing the reverse action applies, for some reason the potassium return to my cells is inhibited leaving excess in the blood to be excreted and the cells low in K.
After time the muscles can no longer function correctly leading to fatigue and lactic acid production, the low K through the body affects the nervous system resulting in many of the CFS cognitive and similar problems.
At least this is my understanding from what I was told years ago. Supposedly the Amiloride (or Spiro) restricts the excretion of the excess K from the blood and somehow forces it back into my cells, hence the term potassium sparing diuretic.
All this was proven in me through medical tests and procedures some of which I believe are not longer able to be carried out (another story).
Now all of this applies to my body and whatever action is in play to cause the problem, it does not necessarily apply to other people, as previously mentioned in the 12 months of trials nearly 30 years ago some PWCs symptoms worsened and others had no effect. In those of us that improved some became T2 diabetic and I became T1 and I have no idea of the mechanism involved.
The upshot is, you must seek medical advice from your GP and possible be referred to an Endocrinologist I suspect.
I have searched for the original research data in recent years to no avail and I have had the use of the University Bar Smith Library resources, my two Daughters in Law who are medical research Doctors, two GPs and my Endocrinologist, nothing came up.
I placed my posts here not to give people hope or advice but because in answer to the original question I am one of the few people who have had direct involvement with ME/CFS research involving Spironolactone. Terry
Thanks @Terry I really appreciate your taking the time and effort to reply. I am one of those people who responds well to higher dose antivirals. The only one I have access to is acyclovir and I tend to hoard it, to use when I need to think or function more normally.
When I developed shingles a few years ago - it was bloody awful that pain - but after a few days of the prescribed dose of acyclovir, so many of my ME symptoms seemed to vanish. I was a bit shocked but I have known people who take the higher dose antivirals for their ME, so I don't know why I was so surprised.
These same people, though, tell me that they have to go off these antivirals now and then to preserve their organ function. They crash of course.
So I avoid any medication as much as possible, because I enjoy staying alive and having my organs functioning well. I do respect whatever people choose to do, however, because quality of life is so important.
I guess I'll see what my GP has to say about spironlactone when I see her next.
@Royal-Flash I realise this is quite old, can you please expand a bit on what you mean by the dr not wanting you to be on it because of the way it works?
@blanketfort replying to myself? >< ah well i am too zonk to work out a better way. Just thought I should update my LDN travels. I ended up stopping LDN for two weeks and my BP didn't change. So have concluded that bp rise and LDN were just concurrent not causal. Sorry for the non helpful derail into bp!
Have recently started back at 0.5mg, though these days I'm by myself almost all the time so I just don't know if I'm up for the nausea that comes with increasing dose (the v active doggo doesn't understand why i don't enjoy throwing up). I would just give up on LDN and maybe try again in a couple years, but I've already spent so much $ on it and it expires in September. I really wish there was a more precise way to increase to 0.6mg, 0.7mg etc rather than jumps. The little syringe thing the pharmacy gave me is so not precise especially when i have loss of fine motor control.
@coco if it was five years ago that was before more recent research (clinical trials etc) that have made LDN less left field and more acceptable to doctors who were reticent. (I was put off trying it for a while because I saw it recommended by groups who also promoted other things i knew were snakeoil. But more research convinced me to give it a go
@blanketfort replying to me again but just a final update on me and ldn:
I think I’m gonna stop trying LDN. The potential benefit is feeling better than I actually am. Which itself has the cost of more risk of PEM crashes, less signals from my body that I’m doing too much. I don’t have confidence to define or enforce boundaries with myself let alone in the presence of others. I will pretend I’m not as sick as I am and will feel more of an imposter (doubt my own diagnosis) at the same time as potentially making myself sicker. Each up in dose makes me sick as a dog for a week, followed by a couple of good days, on which I do too much, followed by a week of crash and loss of ability to walk etc. The obvious thing would be to avoid that bit where I do too much, but seriously i'm mostly under house arrest with me/cfs, if i am able to walk with my dog to the corner of the block and back, i'm gonna do it! So even though it might work for me physiologically, i don't think it does pan out for me in real life. (plus too exy$)
@blanketfort Thanks for the update. It’s a risky business trying new meds/ supplements etc. Best wishes.
Looch last edited by
Just wondering if anyone has tried low dose Aripiprazole for their ME/CFS? If so, any success? Side affects?
The following article discusses a trial of it.
@Looch there's a thread on aripiprozale in the non-public section
@Looch sorry, under the name abilify
Looch last edited by
@iris Thank you
@gretch ncned s research on ldn, see link
Thanks for the link @iris. Also interesting to read through the comments to the post.
Aye, I think it's important to recognise that, for whatever reasons, some people diagnosed with ME/CFS do not get benefits from LDN (or get side effects so strong that it's not feasible to take) and that this in no way invalidates their diagnosis or experience. It's great news that for some people with ME/CFS that the research and support for LDN is firming up (and it may be that further research into it helps those whom LDN isn't currently useful for) but there's still a ways to go yet. But we're heading down the path, and at an ever-accelerating rate
@gretch I’m convinced that my ME/CFS became “full blown” after major surgery. It may have been from the actual body trauma, but I’m leaning towards the anaesthetic, or perhaps a combo of both. Two years prior I developed the 1st mild symptoms of CFS but then after a few months I “recovered” and went back to normal activities. But then once I had the op, it was down hill from there. In the past 7 years Ive had 2 more surgeries plus 2 twilight surgeries 4 weeks apart, and from there it’s been a further spiral. I mentioned it to a GP (who had CFS understanding) and she said “yes the anaesthesia would do that.” I’ve also since read similar comments from specialists on YouTube. So I’m now very reluctant to have any future surgeries.
Thanks for sharing that @Glimmer so tough on the body to have surgeries so close to together even without M.E. and totally understand the reluctance. I need to do a bit more research but quite interested in the articles that talk about adjusting hydration/electrolyte levels before and after sedation for people with M.E. Feel like that might be at least an easier option to advocate for.
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.
Hey Hayden and People,
it depends a bit on each person. Some people are cold, some are normal, some are hot.
If you found a dry sauna draining then an infrared sauna is in the same category, but it would be more controllable in your own home than in a public pool setting, so it could be OK.
I used to go daily to the local leisure centre and use both saunas, but I'm a very cold person and like humidity more so I preferred the wet sauna more, but if I had the choice between no sauna and a dry or infrared one, I'd take the sauna.
So many benefits as far as core temperature, muscles, joints, stress relief etc. but for POTS people not recommended.
Saunas are not usually meant for long sessions (over 15-20 mins.) generally as they can be dangerous as far dehydration etc.
Some people find alternating the sauna with a cool or cold water bath/shower to really 'revive' them and get the heart going, but it can be too much for ME/CFS people.
I remember walking home in the dark and it sometimes felt like I was 'walking in sand', but I was warm and relaxed, so it was a trade-off.
The warming of the core temperature, circulation etc. helps with digestion too, so it's helpful in many ways.
@blanketfort thank you for sharing your experience
I will be starting LDN soon. My dr. will have me start on .5mg and recommended to increase by .5mg weekly (or fortnightly/longer, as tolerated). I think I might like to keep some kind of journal to monitor my tolerance/experience (more for my own records and understanding of how it helps or doesn't help me).
Does anyone have any ideas/methods for effective journaling for this kind of thing? How does one measure 'fatigue', 'pain', 'brain fog' etc