• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Best starting place?

outdamnspot

Senior Member
Messages
924
Hi,

A very good online friend of mine is suffering from (what she believes to be) CFS. She doesn't have autonomic symptoms such as POTS etc.; I believe the primary issue is physical fatigue, which she tends to find worsens with exertion, e.g. if she spends a day cleaning the house, she will pay for it for the next 3-4 days.

She is currently taking 10mg of Lexapro for long-term anxiety/depression and Adderall as needed, though the effects are hit-and-miss.

I looked over some of her bloodwork and the thing that stood out was a raised TSH (~4.5 if I recall correctly) and I've suggested she sees an endo, but I think she is feeling too overwhelmed and hopeless to organize a lot of this stuff.

I'm just wondering what she should be doing regarding the basics of supplementation, particularly if she's not so severe that she can still tolerate stuff. I told her to start taking Vit D, Magnesium Malate and Methyl-B12, which she's doing so far.

1. If she's taking Methyl-B12, should she be taking B-Complex w/ Folate as well? Can the Methyl-B12 alone be increasing her potassium demands? Trying to come to terms with Methylation for my own needs gave me such a headache -- and she seems less versed with experimenting with supplements etc. -- that my fear was introducing a low-ish dose of Methylfolate (i.e. what's in a B-Complex) might be more harmful than beneficial.

2. Would it be too risky to suggest experimenting with something like resistant starch? When I wasn't doing so badly, I remember it having dramatic effects on sleep, anxiety and mood; though I don't want to risk messing her microbiome up (further).
 

Basilico

Florida
Messages
948
There's no way to know how she'll react to any of the B vitamins without just trying them. For example, my husband is an overmethylator, but he can tolerate methylB12 and methylfolate just fine (the opposite of what would be predicted). However, P5P (B6) really gives him some strong adverse effects and he can't tolerate it at all. I'm a classic undermethylator and I can tolerate every type of B vitamin (in extremely high doses) with no problems ever. My suggestion would be to try the smallest dose possible of methylfolate and see if there is any reaction. If there is, she can decide to not continue (or try with even a smaller dose to see if she can work her way up). If there's not, then she might feel more confident to try a B complex to see if she tolerates it.

Personally, I don't see why suggesting resistant starch would be risky. I used it in large doses for a period of time, but all I got was bloating so I gave up on it. My husband uses it specifically to keep his blood glucose in check if he's going to have a carb heavy meal and can't walk afterward. It's supposed to be beneficial for gut bacteria, but if she has GI issues, it may cause more problems than it solves, but again there is no way to predict ahead of time. I don't remember anyone complaining of lasting negative side effects, so I wouldn't consider it risky, and if she doesn't react well to it, she should be able to just stop taking it. If you had a possitive effect from it, I think it's worth recommending.

Since fatigue is her main issue, I think B vitamins are a good place to start. Has she tried D-Ribose? Many people on here use that, and while it didn't do anything for me, it supposedly helps with ATP production and is generally well tolerated (I think it's one of those things that either helps or does nothing noticeable).

In case you're interested on using D-Ribose for CFS: https://www.ncbi.nlm.nih.gov/pubmed/17109576
 
Last edited: