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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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an update

littlebird6180

Senior Member
Messages
119
I just wanted to give an update here because I find I tend to come here during my worst times for help and I wanted to make sure I shared my "best" with you as well.

I got some incredible advice here and it helped pull me out of one of the worst crashes I've had - the advice combined with help from my doctor.

In short, I was doing really well until christmas when I experienced one of the worst crashes ever.

A month ago, I decided to go off of just about everything. I stopped taking fludrocortisone, salt pills, rhodiola, b12 injections. I stayed on atenolol, LDN, ketotifen.

I felt a bit better after going off everything and I think essentially I've determined the fludrocortisone and salt pills were having bad side effects for me.

What really changed everything for me though was the decision to pulse my b vitamins. So now I alternate the following in 3 day cycles: folinic acid, L-MTH-5 and niacin. This way, my body doesn't get used to them and they have the same incredible energy rush that they do the first day. So I've been feeling really strong energy, mental clarity, no more depression, no body/muscle aches and just all in all, I feel like I can keep up with my kids. This has been huge. I have no idea if it will last but I wanted to document while I'm feeling good.

Thanks for everyone's help.
 

Johnskip

Senior Member
Messages
141
I just wanted to give an update here because I find I tend to come here during my worst times for help and I wanted to make sure I shared my "best" with you as well.

I got some incredible advice here and it helped pull me out of one of the worst crashes I've had - the advice combined with help from my doctor.

In short, I was doing really well until christmas when I experienced one of the worst crashes ever.

A month ago, I decided to go off of just about everything. I stopped taking fludrocortisone, salt pills, rhodiola, b12 injections. I stayed on atenolol, LDN, ketotifen.

I felt a bit better after going off everything and I think essentially I've determined the fludrocortisone and salt pills were having bad side effects for me.

What really changed everything for me though was the decision to pulse my b vitamins. So now I alternate the following in 3 day cycles: folinic acid, L-MTH-5 and niacin. This way, my body doesn't get used to them and they have the same incredible energy rush that they do the first day. So I've been feeling really strong energy, mental clarity, no more depression, no body/muscle aches and just all in all, I feel like I can keep up with my kids. This has been huge. I have no idea if it will last but I wanted to document while I'm feeling good.

Thanks for everyone's help.
Nice to hear good luck!
 

Gingergrrl

Senior Member
Messages
16,171
folinic acid, L-MTH-5

Are these two different types of Folate or Folic Acid? I am doing well with Methyl B-12 now but trying to find a type of Folate that I tolerate. Are you taking two different types of Folate or am I totally confused?!!

And am so glad you found something that is working for you!