Mb12/methylfolate and extreme fatigue

[Squirmy85]

Here's what I'm taking, daily totals

Jarrows 500mcg (2mg total)

Solgar folate 800mcg (up to 2400mcg)

Vitamin C up to 3g daily

Vitamin d3 up to 4000iu (I completely avoid the sun, when I do go out I'm covered in sunscreen/long sleeve shirts/wide brim hat)

Pine bark extract 150mg

Grape seed extract 100mg

Bacopa 1.5g

Evening primrose oil (3 pills a day not sure of dosage)

Magnesium citrate (2g)

L-agrginine (2g)

L-lyseine (2g)

Pure encapsulatipns b-complex once daily

B6 conezymated sublingiual (2 lozenges daily 25mg , at night)

Lemon balm, kava kava, Valerian root as needed for sleep

Niacin (flushing kind) up to 200mg daily some days I don't take any

Potassium as needed.

I have on the way,

Adb12 .
Carnitine fumarate
Taurine
And country life Mb12 even though it has folic acid
Vitamin b5
P5p capsules
Krill oil


Most of my symptoms still come and go, energy wise I'm doing well on good days, my bad days when I take mb12 I get really tired

I can't keep my eyes open and I just sleep all day long or just lie down not wanting to move. I've been sleeping better at night, I actually fall asleep between 11pm-12am most night instead of my 3-4 am, I feel refreshed in the morning instead of groggy. I still have mild brain fog too, I wake up at 7am regardless of what time I fall asleep

I still have joint pain and easily fatigued during exercise (which includes cleaning I have to work slow , I have to walk slow....) swollen tongue with slowly disappearing papillae, and white coating (this is my most annoying symptom ....

I saw relief from it when I first started mb12 and folate. But it's since come back less than before, dry mouth feeling along with dry eyes

What gets me is the excessive tiredness after taking mb12 and folate in the morning I take it around 7:00am and by the time 9am hits I can't stay awake anymore. Do I need to adjust dosages,
Since starting mb12 my fatigue has worsened a bit, as has my joint pain, I stopped taking my massive daily dose of ibuprofen

How do I fix the super tired part should I spread my doses out further apart, or take all mb12 two hours before bed ? Would increasing folate help ?

I stopped seeing doctors years ago cause none helped me just wanted me on ssris which do not work for me I get the bad side-effects from it. I was diagnosed with lupus when I was 20 but as a "shut up and go away diagnosis" symptoms didn't fit except maybe joint pain and a rash on my collarbone that never goes away.

Any help would be appreciated (I'm willing to stick out this issue cause I'd get this as a symptom when I over did it, but would like to remedy it as quickly as possible cause I want to be able to celebrate my birthday on Saturday instead of staying home again cause I don't feel well.

 

[whodathunkit]

@Squirmy85: LOL at your forum handle.

This "up and down" is pretty typical when first starting methylation protocol. I've been doing methylation protocol for over 2 years now, and am very stable, but in the beginning I had a lot of side effects as my body healed. Sides included a period of excessive sleepiness like you say is happening to you. It was transient for me.

What worked for me was increasing mb12 and folate dosages until symptoms became stable or at least tolerable. I also took up to 70,000mcg adb12 per week. Then staying at those dosages until things stabilized, and I was able to step down my dosage without precipitating more symptoms. If you consider this, please educate yourself by reading the sticky threads at the top of this forum. Increasing dosages is an individual decision, and the individual is the only one who can decided what is right for their body.

LCF was a little more problematic (gave me a lot of iinsomnia and anxiety), but I started small, and stopped it if it really started bugging me. I did bounced around with it for a while and then one day after I hadn't taken it for about a week, I could suddenly tolerate 500mg of LCF per day. Then I quickly upped that to 1000mg/day, and I've stayed at that dose ever since. I love the stuff.

In addition to doing methylation, you might want to consider researching how to fix your gut, and adding supps to address your gut into your regimen. I did very well on @Freddd's methylation protocol for a year, but it wasn't until I began to seriously address my gut that things really stabilized. All symptoms got notably better. Adding in a gut regimen also increased my stamina remarkably. After a year of methylation and a few months of seriously addressing my gut (while still doing methylation), I discovered I no longer get PEM, for example. No crashes of any duration even after doing high intensity exercise. Not saying it will work exactly like this for you, only that the combo of methylation plus gut really seems to address a lot of issues.

But again, before you try anything, do your research and make a decision on what you think will benefit you the most, not what someone else recommends.

HTH a little bit. Good luck!

 

[Squirmy85]

Thank you @whodathunkit , I seem to be doing up and down, the first 500mcg of mb12 I took gave me instant energy to the point of being jittery, I also found out my tolerance to caffeine is non existent now, before I could drink coffee all day long right up until bed without any problems now it's like instant bouncing off walls.

It has helped me cut down on soda though cause even that causes problems now. My sugar and care cravings are gone, except for two spoonfuls of ice-cream every so often.

I've eliminated gluten from my diet , I can tolerate small amounts but even that is problematic now, gluten was taken out before I started mb12 process. I went years thinking pain after eating was normal that I just over did it. My gut is much more happy now, and I think I'm about to remove dairy (I only eat cheese and yogurt) milk and eggs were taken out years ago cause I couldn't stand the taste.

I'll miss my Greek yogurt, but I'll live.

No more excessive bloating /painful gas and doubled over pain in general after eating. I eat mainly granola , vegetables, and use vanilla almond milk, and eat a lot of salads,chicken , and pork... I can't stomach beef products.

I'll have to mess around with my dosages,I noticed the folate actually causes my jittery feeling and mb12 gives a boost of energy followed by a "I must sleep" period.

I'm trying to take zinc and b6 to hopefully help with photo sensitivity , as I can't walk outside with out sunglasses on even then I'm still squinting, I've noticed minor improvement. I managed to go out at 4:30 while the sun was going down without sunglasses on which is a first in years. Headlights still bother me though.

Overall I feel a lot better then what I did two weeks ago. I'm hoping the cartinine will help build my muscles back up , I've never had toned muscles ever, or strong for that matter. And I've heard people say it helped with that.

 

[whodathunkit]

A note: all the other B vitamins need B2 to work properly, but especially folate and the B12's. You might consider reading up on B2. The active form is called FMN. I've recently discovered that B2 should have been a more essential part of my early recovery. I'm making up the deficit, but it would have been better if I'd been taking it all along. YMMV.

 

[Squirmy85]

I read about b2(I think it was your post too) that's the one I forgot to order but a trip to a vitamin store can fix that. I did pick up b5 as I do badly with even minimal doses of biotin and I read b5 competes with biotin so I'm hoping it'll help. Biotin is not my friend I get no benefits from it other than excess oil production. B5 should in theory counteract biotin effects on me.

And I do plan on taking b2 in my b-complex and as a stand alone vitamin

I'm one of those massive researchers before I put anything in my body, I don't like doctors as in reality all they do is educated guessing, some are good ,no prescription drugs anymore except antibiotics when I know I absolutely need them.

Since supplementing I find I'm better, most symptoms even though present are diminished so I can function better, however I still find being out under pressure (for example my husband ordering food at a restaurant before I've had a chance to look at the menu, creates instant panic, crying and stress I loose my appetite and then sit there wondering what happened, agitation/aggression happens at the same time) same thing happens when I'm rushed In anyway. (Shopping, getting ready, walking fast) it raises my heart rate and causes breathlessness and a feeling of confinement

 

[Biarritz13]

Hi whodathunkit!

Did you ever take a ubiome test or something like that before and after?

I am impressed that you have been able to suppress your PEM...

BTW, do you consider that you are still healing?

Edit : What was your trigger please?

 

[Crux]

Hi @Squirmy85 ,

I noticed that you're taking a lot of NO donors (nitric oxide). I've been reading a lot about them lately.

They can be good energy producers , but in excess, they can be Inflammatory.

Some that I noticed are : grape seed extract, pycnogenol ,l- arginine , even vitamin C.

Folate is used in the body to form tetrahydrobiopterin, which is used to make nitric oxide.

Hope you figure out what's causing the negative symptoms.

 

[whodathunkit]

@Theodore: I have several ubiome kits, but I cannot bring myself to use them. I will sometime, though.

I definitely consider that I'm still healing and in fact am resigned to the reality that I may never heal completely. There are still cognitive, mood, and hormone issues that I'm trying to address. But depending upon snps and preexisting damage, I may not be able to heal completely. I'm middle-aged, so it's hard to know what regenerative capacity I have left. But my primary goal is not necessarily long life, but quality while I'm around, and quality has improved vastly, so most days I'm pretty okay with the possibility of not being able to fix everything. Some days not, but most days I am.

My trigger was actually host of things, with each new insult leading to worse health and functionality until I could barely drag myself around. Junk food and substance abuse in youth played a part. A couple dalliances with low carb played a part (big part). SSRI use played a part. A series of extreme emotional shocks played a part. A very weird virus back in the early '00's played a part, which took me several months to get over and left me with tingling neuralgia in the front part of my thighs until I was over it completely. My health was never the same after that virus, although it didn't debilitate me except in the acute stage.

Then the prolonged stress of trying to be an adult student when I didn't have the psychological, physical, or monetary resources to cope properly capped it all. I was never bedridden but devolved to the point where I could only just do the bare necessities. I had to quit work and rely on student loans to survive. My house is still a wreck because of it. I wasn't able to clean it properly for years, and currently I choose to spend my discretionary funds on my health instead of hiring a housekeeper. Since I started recovering I've been prioritizing physical fitness over "make up" housecleaning because I still only have a finite amount of energy and motivation to go around. So the poor house is still suffering. It's nice to know I'll get to it one of these days, though.

 

[Squirmy85]

Hi @Squirmy85 ,

I noticed that you're taking a lot of NO donors (nitric oxide). I've been reading a lot about them lately.

They can be good energy producers , but in excess, they can be Inflammatory.

Some that I noticed are : grape seed extract, pycnogenol ,l- arginine , even vitamin C.

Folate is used in the body to form tetrahydrobiopterin, which is used to make nitric oxide.

Hope you figure out what's causing the negative symptoms.

Yes I do, they've all helped me in different ways. I take lyseine because Arginine depletes lyseine, so I do a 1:1 ratio lyseine in the morning Arginine at night. Vitamin C I take in the morning and afternoon, grape seed I'm transferring out of in replace of pine bark extract(I was too cheap to buy pyconogenol, but upon research the only difference is that pycnogenol has to have 80-85% opc content to be labeled as such) (which isn't really an NO contributor but it does boost the effects, scientific research isn't quite sure why, it's more an antioxidant and if pine bark tea saved people from dying of scurvy then it's worth a shot right?)

Inflammatory wise it's gone down enough I could stop taking ibuprofen, I was taking 800mg in the morning and at night, yes I suffered mild kidney pain from it which I haven't had since stopping about a week ago.

Mostly it's just more sever fatigue and my exercise capacity has diminished , it wasn't big to begin with since I'd how best to put this "black out after 3 minutes of high intensity cardio due to my body not getting oxygen to it quick enough along with tightness in chest and lobster red body followed with vomiting" I think that covers it. Pilates planks knock the wind out of me I'm breathless with an extremely elevated heart rate after 40seconds ask me to run and It will put me in the hospital.

Even with NO contributors I'm dosing accordingly and basing everything off how I feel. I'm hoping adding in Adb12 will maybe help as I might be lacking.

I'm still in experimentation phase. I've taken large amounts of biotin out, folic acid, and gluten and am doing better. Vitamin c I don't go above 3grams a day however I do up my d3 little by little, I use to sit in morning sun but since it would cause me to burn easily and hurt my eyes I stopped and started supplementing now I just don't go in the sunlight.

I've been dubbed a vampire by my friends since I'm milky white, and most won't see me until the sun has gone down. I find the term amusing.

I hope I can figure it out. As long as I hear the getting super sleepy can be normal I can manage I'll experiment with dosing up first then if it doesn't help start from scratch and dose even smaller in more extended periods

 

[whodathunkit]

Hey, Squirmy, you might try looking at the Buteyko Breathing method, too. It does a lot for breathing capacity during exercise. I got a book called "Close your mouth" which explained the technique pretty well. I'm doing it and while the effects are subtle and the process can be a bit difficult, I think it's worthwhile endeavor.

 

[Squirmy85]

I'm going to assume, this requires just breathing through your nose.( I'm going to look into it) I already do that, it increases the amount of time I can exercise for, if I even attempt the mouth/ nose breathing I'm out quicker , my 3 minute high cardio is through strict nose breathing. Chances are I will need an inhaler prior to working out, what happens to me is what happens to people with asthma ..... :/ even though I don't have asthma. But I will definetly check it out thank you

 

[Biarritz13]

@Theodore: I have several ubiome kits, but I cannot bring myself to use them. I will sometime, though.

I definitely consider that I'm still healing and in fact am resigned to the reality that I may never heal completely. There are still cognitive, mood, and hormone issues that I'm trying to address. But depending upon snps and preexisting damage, I may not be able to heal completely. I'm middle-aged, so it's hard to know what regenerative capacity I have left. But my primary goal is not necessarily long life, but quality while I'm around, and quality has improved vastly, so most days I'm pretty okay with the possibility of not being able to fix everything. Some days not, but most days I am.

My trigger was actually host of things, with each new insult leading to worse health and functionality until I could barely drag myself around. Junk food and substance abuse in youth played a part. A couple dalliances with low carb played a part (big part). SSRI use played a part. A series of extreme emotional shocks played a part. A very weird virus back in the early '00's played a part, which took me several months to get over and left me with tingling neuralgia in the front part of my thighs until I was over it completely. My health was never the same after that virus, although it didn't debilitate me except in the acute stage.

Then the prolonged stress of trying to be an adult student when I didn't have the psychological, physical, or monetary resources to cope properly capped it all. I was never bedridden but devolved to the point where I could only just do the bare necessities. I had to quit work and rely on student loans to survive. My house is still a wreck because of it. I wasn't able to clean it properly for years, and currently I choose to spend my discretionary funds on my health instead of hiring a housekeeper. Since I started recovering I've been prioritizing physical fitness over "make up" housecleaning because I still only have a finite amount of energy and motivation to go around. So the poor house is still suffering. It's nice to know I'll get to it one of these days, though.

That's interesting. Thank you for telling me your story

So you are not positive to any viruses or something?
Did you have IBS before or it came after?

 

[whodathunkit]

So you are not positive to any viruses or something?

I haven't been tested for any viruses. Primarily because I didn't even realize I fit CFS criteria until I hit PR. I just thought I was fat, uhealthy, and getting older. Which I was, but I just thought it was a more-or-less natural progression. I didn't realize some of my symptoms were symptoms or had actual names (PEM, for example), and I didn't discuss them with my doctor because I figured they were just part of my getting older scenario and "live with it or lose weight" is what the doc would tell me, anyway. I thought poor unrefreshing sleep was just part of getting older for me. Etc. I simply didn't realize my symptoms could add up to anything besides fat and getting old.

However, given my good response to the therapeutic measures I've tried, I suspect I don't have any serious infections. If I didn't respond so well to the things I've tried here at PR I would have resorted to official diagnostic measures, but since I'm happy with my progress I don't see the need to spend the $$$. I don't fit the criteria any more, anyway. If I regress I'll definitely revisit that decision.

Did you have IBS before or it came after?

Bowel problems progressed along with the severity of my symptoms. It was so gradual that I didn't even consider I might have IBS, although after what I've learned about the condition I probably do have it mildly (gut is still a work in progress). But there are also some other female issues that could be playing into my ongoing bowel/gut issues. Hard to tell. I did get diagnosed with leaky gut by my doctor about seven years ago. But I only started addressing it aggressively last year. Doc gave me some things to do, but I didn't stick with most of them as they didn't really produce noticeable results. Her suggestions were not nearly as intense or beneficial as what I've learned and used on PR.

 

[Biarritz13]

This is interesting. Thank you for sharing your story

 

[dannybex]

I read about b2(I think it was your post too) that's the one I forgot to order but a trip to a vitamin store can fix that.

And I do plan on taking b2 in my b-complex and as a stand alone vitamin

I was going to suggest B2 as well when I saw your mention of dry eyes. A deficiency of B2 is connected to both dry and glassy (watery) irritated eyes and sensitivity to light.

Also the pine bark extract, and any supplement or food that has highly astringent qualities can cause dryness in some folks.

 

[Squirmy85]

I was going to suggest B2 as well when I saw your mention of dry eyes. A deficiency of B2 is connected to both dry and glassy (watery) irritated eyes and sensitivity to light.

Also the pine bark extract, and any supplement or food that has highly astringent qualities can cause dryness in some folks.

I lowered the pine bark extract, actually took it and Arginine out for the time being.

Also found out that either vitamin A and/or vitamin E (gamma complex) makes me extremely nauseous (with a full stomach) I took both today separate from a multi as multi vitamins did the same thing. I'll figure out tomorrow buy taking vitamin A without vitamin E.

Also regarding vitamin A and E does anyone know if either of those cause tinnitus ? I had trouble finding info on that. But one of those caused really bad tinnitus.

I think I figured out why I was so tired that day I skipped my 100 mg dose of niacin, I hadn't taken any that day actually, So I'm contributing that to my excessive fatigue. I guess it's one of the ones I need every day.

Still experimenting,

 

[Deltrus]

- bacopa can cause extreme fatigue in some people after a few months. I had this problem and, at its worst, I would just stare at the ceiling of my room without movation to even move my head or think.

- Currently I've been fooling around with my b vitamins. I am finding best success with b1 300 mg, b2 100 mg, 2x per day. And I'm also doing these b12 naps where whenever I get tired, I put a source naturals 10mg adenosylb12 in my mouth under my tongue and let it dissolve in my sleep. My methylb12 5mg sublingual tablets haven't come in yet. I'm finding I'm waking up feeling much more relaxed and less complete shit. Also of note that b1/2 supplementation for me triggers tinnitus which is a sign of b12 deficiency, perhaps deficiency in b1/2 is masking my b12 problems.

A full b complex did nothing for me. No tinnitus. I assume that b1/2 don't absorb as well with other vitamins or in smaller doses.

 

[knackers323]

I haven't been tested for any viruses. Primarily because I didn't even realize I fit CFS criteria until I hit PR. I just thought I was fat, uhealthy, and getting older. Which I was, but I just thought it was a more-or-less natural progression. I didn't realize some of my symptoms were symptoms or had actual names (PEM, for example), and I didn't discuss them with my doctor because I figured they were just part of my getting older scenario and "live with it or lose weight" is what the doc would tell me, anyway. I thought poor unrefreshing sleep was just part of getting older for me. Etc. I simply didn't realize my symptoms could add up to anything besides fat and getting old.

However, given my good response to the therapeutic measures I've tried, I suspect I don't have any serious infections. If I didn't respond so well to the things I've tried here at PR I would have resorted to official diagnostic measures, but since I'm happy with my progress I don't see the need to spend the $$$. I don't fit the criteria any more, anyway. If I regress I'll definitely revisit that decision.


Bowel problems progressed along with the severity of my symptoms. It was so gradual that I didn't even consider I might have IBS, although after what I've learned about the condition I probably do have it mildly (gut is still a work in progress). But there are also some other female issues that could be playing into my ongoing bowel/gut issues. Hard to tell. I did get diagnosed with leaky gut by my doctor about seven years ago. But I only started addressing it aggressively last year. Doc gave me some things to do, but I didn't stick with most of them as they didn't really produce noticeable results. Her suggestions were not nearly as intense or beneficial as what I've learned and used on PR.

Hi wti what did you do to heal your stomach?

 

[Hines]

So, as I can understand, that's normal to have extreme fatigue on Methylfolate? I'm just asking this because I have this.

and by the way, about the part with B2 deficiency. thank you a lot. I seem to have this deficiency as I have the same reactions with the eyes.