Berberine helped me

[Elike]

I wanted to share with you my experience with Berberine (and others). I am in remisson I guess one can say, the last eight months I was in a severe state and now after 4 weeks taking Berberine I am at my pre-severe state. It's not perfect far from it, but I don't feel constantly in PEM mode anymore and I think it has to do with Berberine.
I took it 3 times a day, before that I tried a lot of what Joshua Leisk has on his supplements list for about 3-4 months and than I added the Berberine (3x 500mg) and Curcumin/Turmeric (as well 3x a day). I don't understand how and what happened but I feel much better and just wanted to share this so maybe someone else had this experience...
I found something about it's immunosuppressant qualities and read about it usage in Japan for CFS/ME patients (olthough I can't find that anymore) so I thought let's try it.
Here is an article about it's qualities, it's long and I am still not quite getting it all: https://examine.com/supplements/berberine/research/#molecular-targets_ampk
I will definitely try it again after I am sure it doesn`t do harm as well - maybe it does even get better than this. I now feel again like my old 75 year old (though I am 40) but it is huge improvement from this year of hell.
Hope this information helps someone.
I have to test it again because I am not sure if it was the culprit, it's just a gut feeling and I wanted to share. Though I read the infos here about it and I am unsure if I just post this at all, since it does have some negatives longterm what I understand. But sharing is caring - i thought.

 

[sb4]

I took Berberine for a short while, didn't notice much except it caused gut cramping and diarhea.

 

[DrUniverse]

With or without Piperin?

 

[Elike]

With or without Piperin?

Yes with. I got it from Amazon and it is mixed in it.

 

[Elike]

I took Berberine for a short while, didn't notice much except it caused gut cramping and diarhea.

this whole thing is just so hard to figure out, I just wanted to share my recent experience. I mean still I am not near a functioning person, but I can't explain the little bit improvement otherwise. (also diarhea is something that is just constant since I got this thing 15 years ago, but even that is a little bit better who know for how long though)
Also I am one of those who got an improvement for 24-48h after my covid/biontech jab. I am guessing the whole thing is autoimmune, so who knows what helps when. but right now this did, I think ...

 

[DrUniverse]

I took 5000mg berberine daily and got also improvements.

 

[Pearshaped]

Berberine did definetely help me with bloating, but makes my D worse.
Other than that, did nothing for me.
But glad you found something that helps you.

 

[Rufous McKinney]

I conferred with my Chinese TM advisor on whether I dare try Berberine

Answer- do not try Berberine.

Its been extracted from the plant, and therefore is viewed as a drug. its extremely cold, energetically.

It would be very contra indicated in my case, with IBS-d already. And other adverse side effects could be serious.

I generally stick with my CTM advice. I don't take random herbs or supplements that are isolating ingredients.

 

[Slushiefan]

Yes with. I got it from Amazon and it is mixed in it.

Piperin, which is a black pepper extract, always gives me the runs. I specifically avoid it in my supplements. May be the same for you?

 

[Elike]

A late p.s. I tried to replicate this and bought myself more of the Berberine, and it didn't work.

 

[Husband of]

A late p.s. I tried to replicate this and bought myself more of the Berberine, and it didn't work.

What about the curcumin, which you were using at the same time, could that be the real savior?

 

[Wishful]

A late p.s. I tried to replicate this and bought myself more of the Berberine, and it didn't work.

That's a common occurrence with ME: something works the first few times, then stops working and never works again. Tricky evil disease.

 

[Judee]

@Elike, you mentioned doing the Joshua Leisk protocol beforehand.

Is it possible that "primed" your system to help the Berberine work for you somehow or are you still doing that now too?

Edit: Also is it possible that smaller doses of everything would still work for you without the negative intestinal side effects?

 

[Elike]

What about the curcumin, which you were using at the same time, could that be the real savior?

Yeah I still take Curcumin as well, but still it is not the big leap that it was for a few weeks last year. I am now basically moderate-severe still ...

 

[Elike]

@Elike, you mentioned doing the Joshua Leisk protocol beforehand.

Is it possible that "primed" your system to help the Berberine work for you somehow or are you still doing that now too?

Edit: Also is it possible that smaller doses of everything would still work for you without the negative intestinal side effects?

I am not sure, since I am still taking a load of supplements, so bit of a Josha Leisks list, but not everything. I will look up the difference (for one Glycin I don't take anymore), also I am now taking a 5 mushroom mix supplement and not just Reishi and lions mane alone (as well a little bit less then what he suggested). Maybe you are right, maybe it did "prime" my system.
olthough I believe this is an autoimmunecondition (I guess like a lot of us) - and so with that it will be always a hit or miss, since who knows exactly how to treat autoimmuneconditions,...
Just have to look at MS or Colleganosen, it is treated with heavy medication with lots of side effects and a depending on the severity of the condition a lifestyle acompanied by that. Just like our "status".
sorry if I sound to negative, but I guess the reality of this sh*t hits hard sometimes.

I just hope that this bc007 stuff in Germany will maybe be something - though there is still not enough money for the funding for the MECFS trials, only the Longcovid trials for now.

 

[Judee]

olthough I believe this is an autoimmunecondition (I guess like a lot of us) - and so with that it will be always a hit or miss, since who knows exactly how to treat autoimmuneconditions,...

I know. Yes it does hit hard as you said. There doesn't seem to be a one size fits all or even a one size fits most with this disease and as Wishful said some things work for a while and then unfortunately stop working.

We probably all can attest to the drawers and cupboards we have full of things we have tried that didn't work or stopped working. (I don't get rid of them though...just in case I can find a way to make them work the next time...i.e. different combo or something.)

Where you mentioned autoimmune have you heard about the Coimbra Protocol? Most people getting help from it have MS but he originally started it on a Parkinson's patient and I have seen a couple of people somewhere online who said it helped with their CFS (although whether they had ME/CFS I do not know.) (I think the protocol is suppose to be for MS and Autoimmune disorders.)

The Coimbra Protocol is definitely not a DIY protocol however there at least seem to be more doctors trained in it than ME/CFS.

 

[Husband of]

the gut microbiome is likely to change over time in response to the illness, so different things will have different effects at different times, same as different things will have different effects to different people as everyone has a different biome. The biome could also adapt to whatever you are giving it.

 

[Elike]

Coimbra Protocol

No I haven`t and it sounds interesting. Did anyone here try it?
I take high dose Vitamin D weekly, sometimes even twice per week. But not in the range like in this protocol. I have read up on it, and about possible risks. Thanks!

 

[Judee]

Did anyone here try it?

I tried it for 3 days straight. My teeth started getting loose and gums bleeding. I still felt better on the high dose of vitamin D but now when I take it, I take vitamin C and K2 as well. W/o the K2 I get leg cramps from the D alone.

I didn't keep going with his protocol though (consecutive days, I mean) because of the teeth issue and also because I wasn't working with a doctor. I have a feeling the teeth issue was because D was speeding up nutrient utilization in my body at a massive rate possibly using up the little vitamin C our bodies are able to store creating a type of scurvy. ??? Anyway, just a guess.

I have VDR polymorphisms (I think 21 of them when I do a quick glancing count). Dr Coimbra believes that our blood levels can be normal or even high but the VDR issues mean it's not getting converted or utilized or something meaning we have to take more Vitamin D.

IDK??

There is a Coimbra MS Facebook group that I joined but just to get info. Like I said, I would really want to find a Coimbra doctor before I got serious about doing it. If they would even take an ME/CFS patient. ??

 

[Elike]

I tried it for 3 days straight. My teeth started getting loose and gums bleeding. I still felt better on the high dose of vitamin D but now when I take it, I take vitamin C and K2 as well. W/o the K2 I get leg cramps from the D alone.

I didn't keep going with his protocol though (consecutive days, I mean) because of the teeth issue and also because I wasn't working with a doctor. I have a feeling the teeth issue was because D was speeding up nutrient utilization in my body at a massive rate possibly using up the little vitamin C our bodies are able to store creating a type of scurvy. ??? Anyway, just a guess.

I have VDR polymorphisms (I think 21 of them when I do a quick glancing count). Dr Coimbra believes that our blood levels can be normal or even high but the VDR issues mean it's not getting converted or utilized or something meaning we have to take more Vitamin D.

IDK??

There is a Coimbra MS Facebook group that I joined but just to get info. Like I said, I would really want to find a Coimbra doctor before I got serious about doing it. If they would even take an ME/CFS patient. ??

I wanted to say that I have watched this video on youtube on Vit D toxicity:

and I am going to try to level up my Vitamin D intake measurably.
I mean with your VDR polymorphism it is again a special case, but it seems to have no danger as long as one takes sufficient K2 with it. Yeah Vitamin C, I do take daily, as in Calcium Ascorbate around 2-3 gramms. It healed my gastritis and is always helpful with gastritis flare ups.
It's like twitching an old clock here and there but what else will one do to get better ....
Regarding Vitamin D, I doubt that I will take it into the 100thousand level daily, but 40.000 to 80.000 iU? Why not. Will see, if there is change I will tell