Been treating myself for ~1 month - Looking for feedback

[Wyverngale]

I've been on my current regimen for about a month now and I just felt like sharing what it is I'm doing, how I think it's affected me, and see if anyone has any comments on what I am doing and if maybe I should be looking at doing something differently.

Supplements:
5-htp - 100mg 3/day
D3 - 25mcg 2/day
Methylfolate - 15mg (I know this is high but my psych recommended it and it's been fine)
Methyl B12 - 5mg
Vitamin C - 500mg
Potassium - 600mg
B6 - 50mg
TMG - 650mg

I think I've noticed improvement, although it's been gradual. My living situation is unfortunately one that means I don't usually get a full night of uninterrupted sleep so it's hard to tell some days what symptoms are just the normal and what are due to a lack of sleep. This being said, I seem to have more motivation in general and I'm beginning to make plans for the future that I previously didn't feel well enough to do; it's still a waiting game for me to hope things improve until I will actually take big steps.

The only big improvements that were noticed were when I started and then increased my methylfolate. I started off taking 7.5mg and then upped it to 15mg after a couple weeks at the request of my psychiatrist. For a couple days after both instances I noticed dramatic improvements in energy, mood, and drive but this never seemed to last more than a couple days. It's hard to say if it's still benefiting me as trying to compare is difficult with the spikes of improvement but I would like to believe that it has helped.

Aside from what I've listed I haven't really experienced much else. I have to say it's honestly been a little underwhelming but maybe it was my fault for expecting dramatic improvement. I guess the initial methylfolate experience may have skewed my expectations as well.

Does all of this seem normal? Should I expect this to take a while before I see large improvement? Feel free to share any comments I'm very open to feedback!

 

[andyguitar]

Should I expect this to take a while before I see large improvement?

I seem to have more motivation in general and I'm beginning to make plans for the future that I previously didn't feel well enough to do;

This looks like a large improvement to me.

 

[Pyrrhus]

I have to say it's honestly been a little underwhelming but maybe it was my fault for expecting dramatic improvement. I guess the initial methylfolate experience may have skewed my expectations as well.

We've all been there with some potential treatment or another!

Initial results and long-term results often differ, which can be quite disappointing.

One ME doctor told me that realistic expectations are the ideal, but we also need hope, and it's hard for both patients and doctors to balance the two.

 

[pattismith]

@Wyverngale , it's nice to read you feel a bit better,

I worry about your B6 dosage, B6 is neurotoxic.
"Megavitamin-B6 syndrome has been reported in doses as low as 24 mg/day"

Megavitamin-B6 syndrome - Wikipedia

....

 

[Hipsman]

It's good that you're improving, you might also look into this list of treatment options if you feel like you reached
plateau with this protocol... Also this

 

[jaybee00]

Unfortunately, there is no approved treatment or cure for MECFS. Your vitamins won’t cure the disease.

 

[YippeeKi YOW !!]

One ME doctor told me that realistic expectations are the ideal, but we also need hope, and it's hard for both patients and doctors to balance the two.

I've found that moderate denial is a real helpmate ....

Unfortunately, there is no approved treatment or cure for MECFS. Your vitamins won’t cure the disease.

You're probably, almost certainly, right. But careful and well-researched supplements and other non-traditional interventions can smooth a lot of the bumps out and improve your baseline til a cure comes along ... at least, they did for me. I went from 5 years or so of being bedbound and semi-vegetative to being the ..... well, whatever it is I am now ..... not where I ant to spend the rest of my life, but so many light years away from where I was that I can't find words to express it ....

We all have to find our own way. Sometimes we can borrow a bit from here, another little bit from there, but in the end, we have to craft our own kit, as it were.....

 

[Pyrrhus]

I worry about your B6 dosage, B6 is neurotoxic.
"Megavitamin-B6 syndrome has been reported in doses as low as 24 mg/day"

Related discussion:
https://forums.phoenixrising.me/thr...le-trap-or-blockage.83459/page-2#post-2334166

 

[Wyverngale]

Thanks for the comments! They've been helpful and supportive.

Also, @pattismith I wasn't aware of that so thanks for sharing. I am taking it mostly because in an organic acids test I took recently my levels of B6 were very low so hopefully it won't be as big a concern? I definitely will look into it!

 

[pamojja]

"Megavitamin-B6 syndrome has been reported in doses as low as 24 mg/day"

Can be easily prevented by using pyridoxal-5*-phosphate form of B6. As already @Pyrrhus pointed out.