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"B" Vitamin Supplement Makes CFS/ME Symptoms Worse?

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I also have a new "B-minus" supplement on the way and it lowers the does for everything except pantothenic acid so I'll need to keep a watch on that one.

That's a great supplement that I have used for years.

The only slightly annoying thing about it is that it uses the Niacin form of B3 instead of the Niacinamide form of B3. Niacin sometimes causes a (harmless) skin flushing reaction, while Niacinamide does not.

B3 is a known vasodilator.

I assume you're referring to the skin flushing reaction, which is caused by activation of the tissue-resident macrophages in the tissues and has the side effect of temporarily increasing blood flow to the tissues....
 
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GreenMachineX

Senior Member
Messages
362
Many people have these "start-up" symptoms with B vitamins and you seem to have relatively mild start-up symptoms. For people with mild ME, these start-up symptoms usually go away after a month or two. People with worse ME have to slowly phase-in the B vitamins in order to just be able to tolerate the start-up symptoms.




Here are some related discussions:

What is your understanding of the methylation cycle trap or blockage?
https://forums.phoenixrising.me/thr...the-methylation-cycle-trap-or-blockage.83459/

What to do/take if sensitive to B12?
https://forums.phoenixrising.me/threads/what-to-do-take-if-sensitive-to-b12.80981/

Folinic Acid
https://forums.phoenixrising.me/threads/folinic-acid.62648/
I've been using niacin to slow down the start up effects, but had a thought. Am I just delaying getting used to the methylation by doing that? Basically, resetting every time I do that?
 

GreenMachineX

Senior Member
Messages
362
This problem is as expected based on the supplementation. B3 worsens the orthostatic intolerance. Do not supplement at all if you have a normal diet.

B1 - Dosage ok, but test separately.
B2 - Excessive, but unlikely to be the cause of your problems.
B6 - Excessive dosage, very unlikely to be helpful in these amounts.
B12 - This dosage is too small. Typical dosage for ME is 1000-5000 mcg.
Biotin - Excessive dosage. Could worsen orthostatic intolerance at these megadoses.
Pantothenic Acid - Excessive dosage. Can help with OI by sensitizing adrenaline receptors, but that will increase muscle pain. I recommend you avoid it, or stick to 5 mg (100% RDA) daily.

The two last ones, I'm not sure about.

I suggest you try using only B1, B12 (at least 1000 mcg), and adding lysine.

Disclaimer: I am a sick person guessing.
I've been noticing the niacin orthostatic hypotension whenever I take it, but it doesn't seem to last more than 2 hours or so. For me, worth it to shut down overmethylation as that's far more uncomfortable.
 

godlovesatrier

Senior Member
Messages
2,569
Location
United Kingdom
It was the opposite for me really.

I took thorne b complex and felt better within a few days with a huge energy boost. As time went by though that energy boost simply disappeared. Later on I found that the b vitamins were actually giving me terrible brain fog and this was after several months of using them. So I stopped the b complex and tried all the b's individually. They ALL gave me brain fog, I couldn't concentrate for anything, even with much smaller doses.

So eventually I gave up on that and bought myself some new b12 oil from b12oils.com and that's all I take now. In fact I think my b12 levels are currently quite low as I have had fatigue and low energy return. Methyl and ado b12 seem vital for me to be able to get to a good place. I do intend to take it everyday for awhile.

I tend to notice that I don't need it anymore once b12 causes photosensitivity - where light hurts my eyes. Once I get to that place I generally stop and only dose once a week. But as of right now I take I need daily dosing.
 

GreenMachineX

Senior Member
Messages
362
It was the opposite for me really.

I took thorne b complex and felt better within a few days with a huge energy boost. As time went by though that energy boost simply disappeared. Later on I found that the b vitamins were actually giving me terrible brain fog and this was after several months of using them. So I stopped the b complex and tried all the b's individually. They ALL gave me brain fog, I couldn't concentrate for anything, even with much smaller doses.

So eventually I gave up on that and bought myself some new b12 oil from b12oils.com and that's all I take now. In fact I think my b12 levels are currently quite low as I have had fatigue and low energy return. Methyl and ado b12 seem vital for me to be able to get to a good place. I do intend to take it everyday for awhile.

I tend to notice that I don't need it anymore once b12 causes photosensitivity - where light hurts my eyes. Once I get to that place I generally stop and only dose once a week. But as of right now I take I need daily dosing.
Interesting that b12 is causing photosensitivity. I have that too, but assumed it was from not enough b12. Or maybe I'm caught up now...
 

godlovesatrier

Senior Member
Messages
2,569
Location
United Kingdom
Good deduction. You could be right about that.

The photosensitivity was really weird but basically I'd take b12 and then I'd be useless all day. I'd feel unwell, I'd be photosensitive, I wouldn't have the burst of energy it used to give me.

So like you just assumed that was because my body was working again.

Ans even though it takes about 2 months for my b12 levels to really drop when they so I certainly feel more lethargic and don't bounce back from exercise that easily. Subsequently I'm going to dose every day for awhile and see if I hit the infamous photosensitivity or not.
 

GreenMachineX

Senior Member
Messages
362
Good deduction. You could be right about that.

The photosensitivity was really weird but basically I'd take b12 and then I'd be useless all day. I'd feel unwell, I'd be photosensitive, I wouldn't have the burst of energy it used to give me.

So like you just assumed that was because my body was working again.

Ans even though it takes about 2 months for my b12 levels to really drop when they so I certainly feel more lethargic and don't bounce back from exercise that easily. Subsequently I'm going to dose every day for awhile and see if I hit the infamous photosensitivity or not.
Do you have any muscle issues like cramping or excessively tight muscle/tendons with all this, or tinnitus?
 
Messages
33
Do you have any muscle issues like cramping or excessively tight muscle/tendons with all this, or tinnitus?

I have (always had) tinnitus but something is making it worse. However, the real issue that has recently returned is tight muscles, mild cramps, and muscle pain. When I say returned I had shoulder surgery in late January and had to stop ALL supplements. I restarted everything slowly around the first of February. Since I can't bike ride I have been going on long walks/hikes around the neighborhood and local parks. Until this past weekend I had no issues with muscle tightness or stiffness. Then this past weekend the symptoms came back with a vengeance.

Looking at my current supplements I find that I was taking 750mcg of B12 which is only 31,250% of RDA. So do you think that the B12 supplement is the cause of these symptoms?
 

GreenMachineX

Senior Member
Messages
362
I have (always had) tinnitus but something is making it worse. However, the real issue that has recently returned is tight muscles, mild cramps, and muscle pain. When I say returned I had shoulder surgery in late January and had to stop ALL supplements. I restarted everything slowly around the first of February. Since I can't bike ride I have been going on long walks/hikes around the neighborhood and local parks. Until this past weekend I had no issues with muscle tightness or stiffness. Then this past weekend the symptoms came back with a vengeance.

Looking at my current supplements I find that I was taking 750mcg of B12 which is only 31,250% of RDA. So do you think that the B12 supplement is the cause of these symptoms?
We sound very similar. I'm taking 1/3 of the b12 you are though. How much methylfolate are you taking? Do you get dizzy spells? I literally just recovered from one after walking around the neighborhood. My current theory isn't that b12 is causing these, but that b12 is revealing a folate deficiency. Were you b12 deficient? Is that why you are taking it?
 
Messages
33
We sound very similar. I'm taking 1/3 of the b12 you are though. How much methylfolate are you taking?

850mcg currently every other day.

Do you get dizzy spells?

Not other than OI issues which seem to be related to hydration and perhaps energy/fatigue issues after exercise.

My current theory isn't that b12 is causing these, but that b12 is revealing a folate deficiency. Were you b12 deficient? Is that why you are taking it?

I have one of the bad MTHFR gene SNPs and also had highish (12) homocyatine levels so my FM doc prescribed it. Taking the original B-supreme brought my homocystine down to 8 but with side effects I started every other day dosing and my homocystine went up to 10 at my last test this past August. At that same time my B12 was 1137 which is at the top of the range.

I also just read that the body can store excess B12 in the liver for a considerable number of years so if you are not already deficient it could take some time before deficiency could manifest. I am now wondering if other B vitamins can be stored as well so even if they are water soluble they can still build up in some cases.

I have been trying to figure out this muscle stiffness/pain/fatigue thing for a while. It seems to manifest most noticeably after the muscles are exercised although I have also noticed it in my recovering shoulder.
 

GreenMachineX

Senior Member
Messages
362
850mcg currently every other day.



Not other than OI issues which seem to be related to hydration and perhaps energy/fatigue issues after exercise.



I have one of the bad MTHFR gene SNPs and also had highish (12) homocyatine levels so my FM doc prescribed it. Taking the original B-supreme brought my homocystine down to 8 but with side effects I started every other day dosing and my homocystine went up to 10 at my last test this past August. At that same time my B12 was 1137 which is at the top of the range.

I also just read that the body can store excess B12 in the liver for a considerable number of years so if you are not already deficient it could take some time before deficiency could manifest. I am now wondering if other B vitamins can be stored as well so even if they are water soluble they can still build up in some cases.

I have been trying to figure out this muscle stiffness/pain/fatigue thing for a while. It seems to manifest most noticeably after the muscles are exercised although I have also noticed it in my recovering shoulder.
Today, I lowered my b12 to 250mcg by taking a different multi I have, which also has more b2 than the multi with 300mcg b12. Only 4mg more b2, and 75mcg less b12, but my muscles are already more relaxed in 3 hours. Other difference is 100mcg more methylfolate for a total of 400mcg today, but this didn't change anything on Monday. This is strange. I'm beginning to think it's the amount of b12 or b2.
 

GreenMachineX

Senior Member
Messages
362
Today, I lowered my b12 to 250mcg by taking a different multi I have, which also has more b2 than the multi with 300mcg b12. Only 4mg more b2, and 75mcg less b12, but my muscles are already more relaxed in 3 hours. Other difference is 100mcg more methylfolate for a total of 400mcg today, but this didn't change anything on Monday. This is strange. I'm beginning to think it's the amount of b12 or b2.
Update here: this combo still resulted in overstimulation. Unsure of my next move.
 

GreenMachineX

Senior Member
Messages
362
850mcg currently every other day.



Not other than OI issues which seem to be related to hydration and perhaps energy/fatigue issues after exercise.



I have one of the bad MTHFR gene SNPs and also had highish (12) homocyatine levels so my FM doc prescribed it. Taking the original B-supreme brought my homocystine down to 8 but with side effects I started every other day dosing and my homocystine went up to 10 at my last test this past August. At that same time my B12 was 1137 which is at the top of the range.

I also just read that the body can store excess B12 in the liver for a considerable number of years so if you are not already deficient it could take some time before deficiency could manifest. I am now wondering if other B vitamins can be stored as well so even if they are water soluble they can still build up in some cases.

I have been trying to figure out this muscle stiffness/pain/fatigue thing for a while. It seems to manifest most noticeably after the muscles are exercised although I have also noticed it in my recovering shoulder.
Do you have any comt mutations?
 
Messages
33
Looking back at my experience these symptoms first appeared after a delay of starting the supplements. This leads me to wonder if one or more of the B vitamins built up to a certain level and then started causing problems.

It is said and claimed that B vitamins are water soluble and therefor impossible to O.D. on. However, what is known about any storage of these vitamins in the body? I did some research...

https://www.betterhealth.vic.gov.au/health/healthyliving/vitamin-b

Apparently, B9 (folate) and B12 can be stored in the liver.

I just looked tat my last lab test for B12 and the blood level was at the high limit. However, I don't know if this blood level is making it into the cells. So for now I have stopped my B9 and B12 supplements and seem to be improving, at least in regards to the muscle tightness issue. Time will tell.
 

GreenMachineX

Senior Member
Messages
362
Looking back at my experience these symptoms first appeared after a delay of starting the supplements. This leads me to wonder if one or more of the B vitamins built up to a certain level and then started causing problems.

It is said and claimed that B vitamins are water soluble and therefor impossible to O.D. on. However, what is known about any storage of these vitamins in the body? I did some research...

https://www.betterhealth.vic.gov.au/health/healthyliving/vitamin-b

Apparently, B9 (folate) and B12 can be stored in the liver.

I just looked tat my last lab test for B12 and the blood level was at the high limit. However, I don't know if this blood level is making it into the cells. So for now I have stopped my B9 and B12 supplements and seem to be improving, at least in regards to the muscle tightness issue. Time will tell.
Same here. Today is day 2 without b vitamins for me. The muscle tightness has relaxed, but I still have tinnitus pretty bad. My b12 lab test was closer to the bottom end of normal though. I'm going to restart with hydroxycobalamin instead and hopefully the muscle tightness and such doesn't happen. I was hoping the tinnitus would clear up because it's driving me crazy.
 
Messages
18
Same here. Today is day 2 without b vitamins for me. The muscle tightness has relaxed, but I still have tinnitus pretty bad. My b12 lab test was closer to the bottom end of normal though. I'm going to restart with hydroxycobalamin instead and hopefully the muscle tightness and such doesn't happen. I was hoping the tinnitus would clear up because it's driving me crazy.
Hi there! Just curious after lowering the B12 vitamins did your photosensitivity improve?
 

Jadzhia

Senior Member
Messages
148
Location
England, UK
Since the multi supplement already had 100mg of thiamine HCL I would have expected little to no effect with the TTFD. Much to my surprise it made a significant effect mostly for the better. Unfortunately, the effects only lasted for a couple of months. So I may have depleted something else. However, this would seem to indicate that I have possibly defective genetics that prevent thiamine HCL from working.
Hello Steve! According to the protocol I currently follow (with a few added extras I think it needs), you would be depleting your B2 a lot by taking such a large amount of B1! B1 requires B2 to work, so you've likely made yourself B2 deficient and that's going to cause a lot of problems because B2 is essential to FMN/FAD formation, which is so important to the functioning of many enzyme reactions.

I only take B2 now. I began having issues with B6 toxicity (that was on a multi with 50 mg of most of the B vits). I use transdermal B12 oil.

As for oxalates, yep I can relate. I began having a lot of problems with oxalate dumping - guess what my favourite snack was? Dark chocolate! I still have problems with it now, even though I removed the highest ox foods. Apparently B2 is also connected to that as well, and histamine intolerance.
 
Messages
33
Hello Steve! According to the protocol I currently follow (with a few added extras I think it needs), you would be depleting your B2 a lot by taking such a large amount of B1! B1 requires B2 to work, so you've likely made yourself B2 deficient and that's going to cause a lot of problems because B2 is essential to FMN/FAD formation, which is so important to the functioning of many enzyme reactions.

I only take B2 now. I began having issues with B6 toxicity (that was on a multi with 50 mg of most of the B vits). I use transdermal B12 oil.

As for oxalates, yep I can relate. I began having a lot of problems with oxalate dumping - guess what my favourite snack was? Dark chocolate! I still have problems with it now, even though I removed the highest ox foods. Apparently B2 is also connected to that as well, and histamine intolerance.
Well, my latest experiment is killing me! A couple of weeks a go I proved once again that methylated B9 and B12 caused muscle pain and stiffness so I stopped those. I waited the better part of a week and restarted Seeking Health B minus to see if I would have issues with it. BTW, B Minus has 20 mg of B2. Withstood a daily does of it for about a week and started noticing muscle pain again so I stopped.

Now the weird part. Several days after stopping the B Minus I was awoken in the middle of the night with upper back shoulder spasms like my whole upper back was trying to cramp up but couldn't. This subsided after about 15 minutes and I went back to sleep.

Saturday I was out helping a local charity cut and split firewood. After that session I had some usual back pain but this time it appeared to spread down my left leg between my waist and knee. Made it home limping. Sunday it was no better so I went to the local urgent care, took an x-ray and found no issues, diagnosed probably sciatica and sent me home with steroids and muscle relaxers.

The steroids and muscle relaxers haven't helped the pain much at all. My pain also doesn't really fit the classical sciatica profile. Standing for any length of time is excruciatingly painful while sitting is not; opposite of sciatica.

So now I am wondering if upper back cramping and now lower back/leg pain are possibly related and could be oxalate dumping. If it is it is the worst that I ever had.

I have also figured out that I have dysautonomia. Diagnosis of orthostatic intolerance, EOE, and aortic dilation. The confirming diagnosis is that the OI and EOE responds positively to the thiamine (TTFD) supplementation. That was another experiment that almost killed me due to a fall.
 
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