Improving from moderate-severe to moderate-mild

[Artemisia]

And please DM me if anyone has any questions, I’m available for phone calls aswell. If I can do anything to help, it would mean the world to me. There’s alot I don’t know about my recent improvemens though, but like I said, I’d love to help if I can…

We will appreciate updates / further info. I'm very glad for you and hope it continues.

Do you think it was the thiamin or amisulpride to be the biggest help?

Since in previous years you've spent warm months outdoors, that's not a new variable.

Are people w/ ME using amisulpride commonly?

edit - It's encouraging to see you're only taking 200 mg total thiamin. I've seen people who take 2 or 3 GRAMS of thiamin when recovering from ME but I've never been able to get very high dose, like even 50 mg is hard for me.

Is this the thiamin you take, 500 mg of Solgar HCl B1? Do you break the tablet up to only take 100 mg at a time?

 

[kjetilv]

I’ll keep you guys updated!

I’d say the biggest help seems to be amisulpride, thiamin and kratom. Which one is the most helpful I’m not sure. But with kratom I can feel the effects just 30 mins after taking it, effects are very immediate.

@Artemisia I take capsules, 100mg from Solgar, this one:
https://www.solgar.com/products/vitamin-b1-thiamin-100-mg-vegetable-capsules/

 

[andyguitar]

As for kratom I take about 2g twice daily. This definitely was a part of me improving.

But with kratom I can feel the effects just 30 mins after taking it, effects are very immediate.

Good to hear you are getting a bit of a life back, just wondering if you have had any good days without taking Kratom.

 

[Wayne]

But with kratom I can feel the effects just 30 mins after taking it, effects are very immediate.

I've been curious about kratom for many years, but never delved into trying it. Was wondering what prompted you to experiment with it, and whether your results were different from what you were expecting. In other words.... could you share a bit about what effects you're noticing? Thanks!

 

[kjetilv]

@andyguitar I take kratom every day since going into remission. I’m very scared to change anything this early on - what if symptoms return etc. What I can say though is that some days I don’t take kratom before 2-3pm. I wake up at 10am and feel fine until my first kratom dose for the day!

 

[kjetilv]

@Wayne I think I read about kratom on the forum and got curious. It gives me a boost in energy, I feel calm and I want to socialize and talk, less brainfog, better focus. Before when I used to get PEM I used kratom as a PEM-shielder. It’s great to use it before an activity that may cause PEM.

 

[kjetilv]

Today I am quite fatigued. But I don’t think it’s a relapse. Yesterday I walked 14k steps, which probably was pushing a bit too much… Hopefully I’ll recover quickly. Don’t experience any of the other typical ME/CFS symptoms I used to have, only fatigue.

 

[Treeman]

Hi, what kratom do you use and were do you get it from? Thanks.

 

[kjetilv]

@Treeman Green Maeng Da, but I’m curious to try Red Maeng Da aswell. A family member picks it up in Sweden for me.
https://supremespeciosa.se/products/green-maeng-da

 

[Dysfunkion]

Kratom now only makes me extremely lethargic with a small boost at first, I used to with it get more consistent energy throughout the day despite main mechanism of action. Be careful too because tolerance occurs very quickly and you do not want to be in that 30+ grams a day boat as someone who has been there. I would go back but I know now that I'd just start the cycle again. If you're very controlled with it and it's what is working out for you great but just putting this out there.

 

[kjetilv]

@Dysfunkion thanks for the heads up. And yeah I’ve heard it’s easy to build tolerance quickly. Currently I’m at 2g, twice per day. And it seems to work for me. I plan on having two days a week where I don’t use kratom.

 

[Dysfunkion]

@Dysfunkion thanks for the heads up. And yeah I’ve heard it’s easy to build tolerance quickly. Currently I’m at 2g, twice per day. And it seems to work for me. I plan on having two days a week where I don’t use kratom.

Oh alright you should be fine then as long as you keep that cycle there and getting off would be extremely easy at that little. If I dived back in now I probably wouldn't even be able to feel a dose that low and would need to start around 10 grams and move up, I don't know how long it takes opioid receptors to regenerate but every time I quit and relapsed this was the case so it appears to be an extremely long time.

 

[kjetilv]

Oh alright you should be fine then as long as you keep that cycle there and getting off would be extremely easy at that little. If I dived back in now I probably wouldn't even be able to feel a dose that low and would need to start around 10 grams and move up, I don't know how long it takes opioid receptors to regenerate but every time I quit and relapsed this was the case so it appears to be an extremely long time.

I buy it in powder form, so need to fill the capsules myself, and every capsule holds 0.5g. So it would be alot of work if I started to dose higher than what I do now haha It’s already enough work!

 

[kjetilv]

Update: Still symptom free. I do get more tired than others, but it makes sense considering how inactive I’ve been for 6.5 years. Brain fog, dizziness, sound sensitivity, light sensitivity etc. are all more or less completely gone. I still take amisulpride, thiamine and kratom almost every day. Some days I skip if I feel really good.

 

[Dysfunkion]

Update: Still symptom free. I do get more tired than others, but it makes sense considering how inactive I’ve been for 6.5 years. Brain fog, dizziness, sound sensitivity, light sensitivity etc. are all more or less completely gone. I still take amisulpride, thiamine and kratom almost every day. Some days I skip if I feel really good.

I've given up on the thiamine, I tried multiple forms of it and each one made everything worse besides a little more general reactivity to things. Yesterday I had 100 mg and it was day 3 of that, just felt a weird anxious feeling and really head achy, almost like I was on the edge of a panic attack but not quite. Didn't take it this morning and extra magnesium or potassium wasn't touching the reaction. Probably ramped my immune system up because yesterday upon dosing with the pressure, anxiety, and fatigue I also started getting increased nasal drip, ear ringing, and a histamine like reaction. Hopefully this reaction doesn't take too long to taper off but it sucks that it seems like that was also another dead end for me.

Now sure what really happened though, it felt like I reactivated a virus. This is a continued them with me where something will give me some more energy at first but then something i my immune system over activates and caps everything with some backlash.

 

[Mary]

I've given up on the thiamine, I tried multiple forms of it and each one made everything worse besides a little more general reactivity to things. Yesterday I had 100 mg and it was day 3 of that, just felt a weird anxious feeling and really head achy, almost like I was on the edge of a panic attack but not quite. Didn't take it this morning and extra magnesium or potassium wasn't touching the reaction.

@Dysfunkion - the thiamine might have caused your phosphorous (not potassium) to tank. When I first tried adding thiamine, around 100 mg I think, several years ago, it gave me a really nice boost in energy, followed a day or two later by severe fatigue and anxious jittery etc. I initially tried taking extra potassium because it helped when I first started methylfolate back in 2010 - nice boost in energy followed by severe fatigue, and taking potassium caused the methyl-folate related fatigue to go away. I've had to take it (extra potassium) ever since.

So when the thiamine did something similar, I tried extra potassium but it did nothing for me. Then I read more about refeeding syndrome (see this article) and saw that hypophosphatemia was the hallmark of refeeding syndrome. I read that dairy is high in phosphorous, drank 2 or 3 glasses of kefir, and sure enough, the thiamine-related awful fatigue went away! I'm still taking thiamine (200 mg a day - it's powerful stuff) and also a phosphorous supplement. Someone else on this forum had a similar experience with thiamine depleting phosphorous.

It's hard to find a phosphorous supplement - I used this one for some years: it's sort of a pain to use, have to dissolve the packets, etc. Then I recently discovered this product, and I believe it works better, it's easier to take and ends up being cheaper too.

 

[Dysfunkion]

@Dysfunkion - the thiamine might have caused your phosphorous (not potassium) to tank. When I first tried adding thiamine, around 100 mg I think, several years ago, it gave me a really nice boost in energy, followed a day or two later by severe fatigue and anxious jittery etc. I initially tried taking extra potassium because it helped when I first started methylfolate back in 2010 - nice boost in energy followed by severe fatigue, and taking potassium caused the methyl-folate related fatigue to go away. I've had to take it (extra potassium) ever since.

So when the thiamine did something similar, I tried extra potassium but it did nothing for me. Then I read more about refeeding syndrome (see this article) and saw that hypophosphatemia was the hallmark of refeeding syndrome. I read that dairy is high in phosphorous, drank 2 or 3 glasses of kefir, and sure enough, the thiamine-related awful fatigue went away! I'm still taking thiamine (200 mg a day - it's powerful stuff) and also a phosphorous supplement. Someone else on this forum had a similar experience with thiamine depleting phosphorous.

It's hard to find a phosphorous supplement - I used this one for some years: it's sort of a pain to use, have to dissolve the packets, etc. Then I recently discovered this product, and I believe it works better, it's easier to take and ends up being cheaper too.

Wait that's interesting! I haven't though about phosphorus before and I'll consider it. I think I'll just continue to eat normally and see how fast I improve since I don't plan on taking anymore thiamine at the moment, maybe when I bounce back I'll try again while supplementing phosphorus, potassium, and magnesium all at once. My experience with it was weird. Like I'd feel more energy and it would throughout the day literally flicker on and off (I've tried a lot of supplements over the years but this was a new one to me), yesterday it happened a bit in the morning and after that from later morning and on I felt like I was going down with a flu. Today I'm still feeling pretty wonky but not as bad, think it also really revved up my immune system to much because if I drink cistus tea in this state the whole flu-y lead body fatigue gets worse and one thing it does the best for me outside of this post-thiamine disaster condition if I drink it at the right time helping me (there may also be a difference in effects with it if I drink it later in the day as opposed to the morning, I'm going to be testing that out).

Outside of this what has been working for me on the coffee/tea rotation front was my second coffee brew of the day (I'm addicted, it's staying until it's not there. I know it's unhealthy) around 4 PM, followed by cistus a couple hours later when I notice some immune process that it counters a part of well starts to kick in which ramps up hard around 7 PM if I do anything that makes whatever chain reaction that is worse tied to my circadian rhythm, and then after that drinking green tea which will smooth the increase in immune functioning from the cistus out as well as decrease the other problematic immune chain reaction. I don't know specifically why this works out for me but I'll keep going with it because it's been saving my life lately.

edit - So I looked up my symptoms on here heavy chest, heavy legs/arms, overall feeling like lead, nothing will move properly, increased tinnitus nothing seems to be fighting back easily, a nasal drip, sore throat, heavy eyes, over stimulated without real energy, sound sensitivity, irritable/don't like people or talking, nothing is very enjoyable, and angry/depressed at the same time. I'm in a severe PEM state brought on by the thiamine. I think in an extreme PEM state like this the immune system going nuts which is probably why cistus in this state during morning hours appears to relieve some inflammation but amp up the tinnitus/immune feeling components of this state. Before that magnesium citrate worked well in fighting back the physical paralysis feeling a bit so I guess I'll just keep taking that. I also remembered I had the Irish Sea Moss capsules I tried at one point on hand that I haven't used since because they tend to put me in a weird place mentally but felt amazing for inflammation of whatever is happening in me so I take one and regain a bit more physical movement and mental space back. Still not feeling good at all but in this state these capsules for me appear to be good for cutting down the severity of a PEM storm.

 

[DonPepe]

And please DM me if anyone has any questions, I’m available for phone calls aswell. If I can do anything to help, it would mean the world to me. There’s alot I don’t know about my recent improvemens though, but like I said, I’d love to help if I can…

It may be worth trying mestinon