• 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 (FM), 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.

Sleep issues on protocol

Red04

Senior Member
Messages
179
My wife has been on FREDDD's protocol going on a year. She peaked recovery around 3 months. She could go all day without needing a nap and function pretty well on 7-8 hours sleep. It seems like since we have replaced the B-Right and Adb12 to eliminate folic acid, some of her sleep issues have returned. She also stopped exercising around the same time. (chicken or the egg, im not sure)

She is back to sleeping or wanting to go to sleep right away when we get home from work. She is tired all day from start to finish. The rest of the CFS symptoms seem to be healed. However, she takes long naps on the weekends and is sleeping 10 hours a night. She also wakes a lot during the night. Maybe 3-5 times. Sometimes just sits up in bed for a second and other times she gets up to use the bathroom or whatever. She doesn't drink caffeine or alcohol or any other obvious sleep prohibitive behavior.

She is wanting to see a doctor about sleeping meds. Has anyone had an experience similar to her? Any advice? Something to adjust/add to the protocol. Also, Melatonin supplements don't seem to help.

Thanks in advance.
 

Waverunner

Senior Member
Messages
1,079
Hi Red, I didn't quite get what you meant with eliminating folic acid. Does your wife take any folic/folinic acid right now?
 

anne_likes_red

Senior Member
Messages
1,103
Hi Red04,

I just want to mention that I benefit without any folic acid but I had noticible sleep improvement when I added in some folinic acid.

Best,
Anne
 

dannybex

Senior Member
Messages
3,556
Location
Seattle
That's interesting Anne. I did the yasko testing, and my results suggest folinic instead of...or in addition to methylfolate. (I think the methylfolate is okay later on...)

Can you refresh my memory...did you try methylfolate for awhile...and have reactions to that?

d.
 

Red04

Senior Member
Messages
179
Hi Red, I didn't quite get what you meant with eliminating folic acid. Does your wife take any folic/folinic acid right now?

I was referring to the change in the protocol outlined in this thread:

http://forums.phoenixrising.me/show...in-inducing-deficiency-called-quot-ddtox-quot

The end result was replacing B-Right with douglas labs multi B without folic acid and replacing the adb12 with folic acid with source naturals adb12. My wife has not taken any supplements with folic/folinic acid since May or June.
 

Red04

Senior Member
Messages
179
That's interesting Anne. I did the yasko testing, and my results suggest folinic instead of...or in addition to methylfolate. (I think the methylfolate is okay later on...)

Can you refresh my memory...did you try methylfolate for awhile...and have reactions to that?

d.

My wife was always (since starting the protocol) been on methylfolate, but was getting folic acid from the adb12 and b-right. We changed those up to avoid folic acid.
 

anne_likes_red

Senior Member
Messages
1,103
Hi again,

Now I'm using 200mcg folinic acid from Holistic Health. (1/4 capsule.)

The first time I noticed a positive effect from folinic acid I had introduced Metagenics acti-folate which also contains a small amount of folic acid. I've stopped (reluctantly) and re-started folinic acid a couple of times to confirm the positive effect it has on my sleep.

HTH :)

What is your source of folinic acid?
 

anne_likes_red

Senior Member
Messages
1,103
Hi Dan,
I had no negative reaction to methylfolate but I did feel if I took any significant amount of folic acid I didn't get the same benefit from other, active B vitamins (esp methylfolate and methylb12).
I take 200mcg methylfolate and 200mcg folinic now and that seems to suit me well. Folinic makes a marked improvement to my sleep - especially to staying asleep!
Anne.


That's interesting Anne. I did the yasko testing, and my results suggest folinic instead of...or in addition to methylfolate. (I think the methylfolate is okay later on...)

Can you refresh my memory...did you try methylfolate for awhile...and have reactions to that?

d.
 

Waverunner

Senior Member
Messages
1,079
I was referring to the change in the protocol outlined in this thread:

http://forums.phoenixrising.me/show...in-inducing-deficiency-called-quot-ddtox-quot

The end result was replacing B-Right with douglas labs multi B without folic acid and replacing the adb12 with folic acid with source naturals adb12. My wife has not taken any supplements with folic/folinic acid since May or June.

If you stopped folic acid completely and the sleep issues started afterwards I would reintroduce it.
 

Red04

Senior Member
Messages
179
I was reluctant to do that as she had a few week long crashes where most of her symptoms came back. One crash came when she replaced A,D,E,C with a multi that had folic acid and the other came when she adjusted the timing of the protocol and when she took B-right. They both seemed to point to folic acid.

I guess we could give it one more try. I am intereseted in the folinic acid now as well...
 
Messages
15,786
You could try folate instead of folic acid. Some people can't process folic acid, and need the active (folate) form.
 

Red04

Senior Member
Messages
179
My wife has been on FREDDD's protocol going on a year. She peaked recovery around 3 months. She could go all day without needing a nap and function pretty well on 7-8 hours sleep. It seems like since we have replaced the B-Right and Adb12 to eliminate folic acid, some of her sleep issues have returned. She also stopped exercising around the same time. (chicken or the egg, im not sure)

She is back to sleeping or wanting to go to sleep right away when we get home from work. She is tired all day from start to finish. The rest of the CFS symptoms seem to be healed. However, she takes long naps on the weekends and is sleeping 10 hours a night. She also wakes a lot during the night. Maybe 3-5 times. Sometimes just sits up in bed for a second and other times she gets up to use the bathroom or whatever. She doesn't drink caffeine or alcohol or any other obvious sleep prohibitive behavior.

She is wanting to see a doctor about sleeping meds. Has anyone had an experience similar to her? Any advice? Something to adjust/add to the protocol. Also, Melatonin supplements don't seem to help.

Thanks in advance.

I thought I would bump this since FREDDD is back on board. My wife still hasn't been able to overcome the sleep part of her symptoms. She will sleep all weekend and sleeps upwards of 9 hours per night during the week. She is 95% cured from CFS. Just this lingering sleep problem. She also fully wakes up 2-3 times a night, has some occasional teeth grinding.

During our CFS journey she had a couple sleep tests that yielded no abnormal sleep patterns.

She takes the full protocol, but we eliminated SAMe, TMG, ALA, and L-carnitine fumarate after 6 months of now real improvement and havent noticed any fall off without them. We never tried D-Ribose.

Thanks in advance
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I thought I would bump this since FREDDD is back on board. My wife still hasn't been able to overcome the sleep part of her symptoms. She will sleep all weekend and sleeps upwards of 9 hours per night during the week. She is 95% cured from CFS. Just this lingering sleep problem. She also fully wakes up 2-3 times a night, has some occasional teeth grinding.

During our CFS journey she had a couple sleep tests that yielded no abnormal sleep patterns.

She takes the full protocol, but we eliminated SAMe, TMG, ALA, and L-carnitine fumarate after 6 months of now real improvement and havent noticed any fall off without them. We never tried D-Ribose.

Thanks in advance

HI Red04,

And you are sure that removing these didn't in the end cause or contribute to tjhe sleep problems. I suspect the l-canttine fumarate especially since
She is back to sleeping or wanting to go to sleep right away when we get home from work. She is tired all day from start to finish.

I thong she needs to restore the FULL thing again,even to the b-right and get her back to good condition instead of guessing and playing only with forms of folate. This really doesn't sound like folate but more like SAMe, TMG, ALA and l-carntine fumarate.

You got rid of all the things that normalized the ATP generation and things like that and when she has problems maintaining energy gvo after folate? I don't buy it. She got into trouble previsouly changing what was working.

Also, Assume that to really heal these things will take 5 years so don't be so quick to quite so amny of the active critical cofactors. Besides that, this won't be healing the original casues so all the junk will come back as you ellimiate what is working. It will happen over and over. I will tell you from experience that it doesn'r becessary heal as well successive times when it doesn't complete in the first place.
 

Rosebud Dairy

Senior Member
Messages
167
Women in their fertile years with heavy periods will almost certainly need potassium, and this one need alone can possibly create a vicious cycle of blood loss, fatigue caused by it, and by the potassium gap created by the blood loss in trying to get more red blood cells back in to circulation. One could stay perpetually tired from this one thing alone, never mind all the other issues CFS'ers can have in addition. I cannot speak to other supplements as well as other members, but just looking at the woman's cycle with a smart open-minded doctor can provide a lot of information.

This is still somewhat sketchy, but is possibly worth some research. Any women who has had issues with endometriosis or adenomyosis combined with heavy periods should look closely at the potassium issue with her doctor.
 

rydra_wong

Guest
Messages
514
Hi again,

Now I'm using 200mcg folinic acid from Holistic Health. (1/4 capsule.)

The first time I noticed a positive effect from folinic acid I had introduced Metagenics acti-folate which also contains a small amount of folic acid. I've stopped (reluctantly) and re-started folinic acid a couple of times to confirm the positive effect it has on my sleep.

HTH :)

I just want to comment that Thorne Basic B is all active B's including folinic acid. My Yasko profile also requires folinic acid. So I think this is the perfect active B complex if you are looking for something whihc contains both mfolate and folinic acid. I like that it's all in one pill.