Any Suggestions for an increase in energy would be appreciated

[nryanh94]

Currently in the worst crash I’ve had since I became ill 4 years ago. I’m typically fairly mild, can work full time but since my wife gave birth to our daughter in January I guess I over did it. I started feeling really exhausted dude to pack of sleep about a month in, but about 2 months ago I hit a wall really hard and now I have a new form of exhaustion I’ve not experienced before.

I have a non stop feeling of what I’d describe as drowsiness that I can’t shake, it just feels like I need to sleep all the time. I’ve tried everything I can think of supplement wise to increase energy: Ubiqunol up to 800. High dose b12 sublingual, D ribose, Alpha lipoic acid, Acetyl l Carnitine, high dose BCAAs, Creatine HCL, Citrulline. Nothing is helping at all.

My dr is going to let me give Abilify a shot, and I’m currently on Valcyte for what we believe to be very high EBV levels. Any other supplements anyone on here have found helpful that might help shake this drowsiness or help curve the crash some?

thank you

 

[godlovesatrier]

Sometimes I've found non energy boosting things the best for energy increase. For example Lauricidin after several weeks of titrating up and dosing until I could reach 3000mg monolaurin 3x a day which is 3 lauricidin scoops a day gave me quite a lot of energy throughout the day. No real side effects for me taking this stuff, if I get into a bad way I normally fall back on this and take it to get well again.

I also found andrographis paniculata stimulated my immune system. While this is a no no for ME types, andrographis paniculata is meant to be auto immune safe, so the way it stimulates the immune system might be ok (It's used for rheumatoid arthritis and other auto immune diseases so this might be why it's considered auto immune safe). I used this on and off for 2-3 years to increase energy levels via immune stimulation, it also has tons of other effects and is a strong anti inflammatory in both the brain and the body (as it crosses the BBB).

High dose BCAA's can put you into a viscous cycle, as can other things like glutamine, carnitine because these things give you energy which you then use but you crash afterwards. The constant push crash cycle will make you worse. I used to take bcaa's if I needed to go out and do a lot, then I'd subsequently crash and spend up to a week or two recovering back to baseline. If you're taking them say every day and you're constantly using up more energy than your baseline affords, this is a very slippery slope.

As you like me still work full time, you can't really afford to "just rest" as your mental abilities and fatigue will directly impact your ability to work.

None of the above advise is a recommendation, but those have been my experiences. I stay well away from l glutamine, carnitine and things like this as they've never done me any good.

Whey protein isolate is also another good adjunct but I find the effects can only last a few hours, I think it's 50/50 whether this helps you or not. @Murph takes an australian bcaa branded whey protein which she swears by and has taken for years. I've recently bought some UK branded whey protein isolate and actually found it quite helpful, but you do have to be careful as I find the body still crashes off whey isolate.

As for EBV I found I benefited from over 120g of protein per day (ebv supposedly hates high protein diets as it really slows its viral replication ability) and when I lowered my carbs a few years ago to around 130g a day, I found this helped and made me feel a lot less inflamed.

Good luck finding some things to help, I've been battling to remain in full time work the last 12 months, I am still not in the best place yet. Normally I can bounce back onto a half decent baseline, but it's become harder and harder to do this. Most treatments I find seem to help me mentally but physically my body just remains weak like something is really broken internally.

 

[Wishful]

I expect that there are a number of mechanisms in ME that induce that drowsiness, and each type requires a different treatment. So, no guaranteed treatment, but more than one potential treatments possible.

Iodine helped me in such a situation, though later it proved to be T2 (thyroid hormone made from iodine) that was responsible. The tiny amount in a typical multivitamin/mineral tablet was enough to show the benefit, so if you already take that and don't notice a benefit, a separate supplement probably won't do it either.

It could also be something that you normally ingest daily, so trying a minimal nutrient diet for a few days might show something. I recommend cornstarch pancakes as easy, reasonably satisfying, and pretty much nutrient-free.

 

[Judee]

The hard part is that even if something worked for one of us in some way, there's a good chance it wouldn't work for another pwMe or could even make that person feel worse. That's the nature of this disease unfortunately.

I would say though if you are going to start going through a bunch of things to try, start with any organic herbs you have in your kitchen cupboard (but one at a time). Make them into a dark tea (4 hours in the crockpot) is what I do with thyme tea* (1 T to about 6 cups of water) and then strain and sip throughout the day.

I'm not suggesting you necessarily start with something like thyme; just giving you the formula I use to make the tea.

Ken Lassessen has a website where he has included some surveys of what some with ME/CFS have found that help: https://cfsremission.com/2018/05/12/user-surveys-updates/ (At the bottom of the page there is a list of links that breaks it down further than that long overwhelming list on the top.)

*thyme tea did seem to give me a tiny boost when I was on it but then life events got in the way and I stopped making it. Ken also rates it as "super herb." https://cfsremission.com/treatment/antibacterial-herbs-for-cfs/

 

[godlovesatrier]

True. Thymes a great bacteria killer. Totally messed my teeth up. I'm starting to think I have some sort of genetic disease where my teeth are concerned. Because thyme seems to eat at the enamel just as bad as spinach. @Learner1 just remembered this from one of our chats.

Anyway sipping a strong tea is a good idea.

On a side note I found loads of links the other day to people who has recovered from ME by taking beta glucans. One guy in particular. I need to find the link again. But need to get up for work now...

 

[lenora]

Hello @nyranh94. This may be a poor suggestion, but it may also help you, your wife and child in the end.

Is your family near....or even your wife's? If you really feel like you could sleep, why don't you try to take a weekend in bed doing just that. Who knows? It may be enough to help you get on the path to recovery.

Life with a newborn can be hectic, no question of that. Perhaps the baby has settled into more of a routine now and your wife won't need your help as much. If your family or close friend is near, the most you can lose is another night's sleep. It would be a shame for you to backslide so much. Congratulations! Yours, Lenora.

 

[Strawberry]

Have you tried low dose naltrexone? I had tried the same upwards titration technique that most here use, and would crash hard from too much energy. Then it wouldn’t work. I’m now currently on 0.5 mg naltrexone, so ultra low dose, and it’s working. So far……..

Low dose naltrexone messed with my sleep big time, but ultra low dose isn’t.

Definitely give abilify a try, but I’d leave the higher doses for the severe. I’m wanting to try it also, but I intend to stay at the absolute lowest dose that works. I’m done with titrating up until something happens, and then it no longer works.

I think those of us in the mild to moderate category need less, but that is my own personal theory.

 

[odd_skipper]

Try milk thistle, high dose B1, and ketoneaid KE4 ketone esters.

 

[godlovesatrier]

High dose b1 worked well for me. My own personal combination that worked well for 4 weeks was: 600mg b1, solar ray probiotic 1 capsule a day (gives a boost to me all day), 500mg nac and 1000mg glycine. That was pretty steady and calming. Which is ideally what you want.