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

Messages
26
Likes
41
Hello,

I am new around here and have a perplexing question that I am trying to figure out. Unlike my sister who has been diagnosed with CFS/ME I have not but definitely show a lot of the symptoms of CFS/ME. I have recently been seeing a Functional Medicine doc to try to sort out some of these symptoms (mostly fatigue and OI).

My FM doc has put me on a multi B vitamin supplement with the following formulation:

B1 -Thiamine HCL - 100mg
B2 -Riboflavin - 50 mg
B3 - Niacin 50mg
B6 - Pyridoxine HCL & Pyridoxal 5 Phosphate 50mg
B9 - Folate as Quatrefolic - 340mcg
B12 - Methylcobalimin - 250mcg
Biotin (as d-biotin) - 2mg
Pantothenic Acid - 100mg
Choline - (as Choline Dihydrogen Citrate) - 30mg
Trimethylglycine (TMG) - 200mg

I have confirmed on several occasions in a N=1 trial (myself) that this B vitamin supplement seems to make existing CFS/ME symptoms noticeably worse. Orthostatic hypotension gets noticeably worse as well as muscle pain and weakness. If I am just sitting around the house the worsening is subtle. However, if I do anything that involves physical activity such as cycling or hiking the symptom worsening is very noticeable.

Have any of you ever run into this issue or have any insights as to what might be causing the increase in symptoms?

Thanks,
Steve
 

Judee

Senior Member
Messages
3,067
Likes
8,555
Location
Great Lakes
Some of us have sulfur/thiol sensitivities. B1 and Biotin are in that category. I can take them once in a while but not all the time or I get migraines.

The other thing is some of us don't do well on Choline. I don't know why but here's a thread where some talked about that.
https://forums.phoenixrising.me/threads/does-methylation-increase-acetylcholine-in-the-brain.79376/

Thirdly, TMG makes me angry. Again, I don't know why but DMG is calming for me. ??? :xeyes:

Anyway, just some thoughts. Of course, it's hard to know for each individual.

Hope you can figure it out for you. Trust yourself though if something doesn't feel right.

Doctors, even FM doctors, tend to get locked into one-size fits all unfortunately.
 

Critterina

Senior Member
Messages
1,238
Likes
745
Location
Arizona, USA
Hi Steve,

Many B Multi-vitamins are produced by fermentation processes, and many people (myself included) who have a constellation of symptoms that typically include OI are intolerant of fermented products (wine, cheese, chocolate, kombucha, tea, etc.) and several foods as grown (tomatoes, spinach, kiwi, papaya). For me, the term "histamine intolerance" describes what I react to, but there are other, and varying, sets of things that cause reactions. Some with Mast Cell Activation Syndrome (MCAS) react to different things every couple of weeks.

I have not found a B-multi that does not cause reactions since Answers from Nature brand went out of business with the death of the owner. I take each B individually. It's a pain, but at least I'm getting what I need. I use Vitacost and Swanson. I also need activated B3, B6, B9, and B12. The B12 (methylcobalamin) needs to be sublingual because stomach acid separates the methyl group and, genetically, I have a hard time methylating cobalamin. I also need B12 three times a day. It doesn't really matter the dosage, just the frequency.

Everyone is unique, and you will have to find your own answers, unfortunately. But the single Bs are not expensive, and if you add one at a time, you can tell if it makes you worse. They may only make you better in combination, so don't leave out something if it doesn't have a positive effect yet.

I'm wondering if you had a test to determine how much of each B you need. The Genova Diagnostics test does that, but then the doctor sometimes adjusts based on symptoms or genetics. It's expensive, but for me has been very consistent in the results.

Just in terms of OI, I've had that since I was 4 years old. Diagnosed at 60. Adding salt and electrolyte supplements (Vitassium Saltstick and Liquid i.v.) really reduced my symptoms to about 10% of what they were before.

Best of luck to you. I just observed my 10th anniversary of my chronic illness having started. Not celebrated, you know? I'm much healthier now (although not well) and have a host of rare diagnoses, but life is good overall. I hope you get to that point.
 

Critterina

Senior Member
Messages
1,238
Likes
745
Location
Arizona, USA
Thirdly, TMG makes me angry. Again, I don't know why but DMG is calming for me. ??? :xeyes:
I have the exact opposite. I took DMG and found myself POUNDING on the piano - the same piano that I usually don't press the keys hard enough to make a noise. TMG is good for me. How different we are!!
P.S. I have accelerated CBS, and mutations that obstruct turning homocysteine back into methionine - both homozygous in MTRR and BHMT-08, plus hetero accelerated MTR.
 

lenora

Senior Member
Messages
3,763
Likes
6,553
Hello Steve_Sr........I also have problems with any of the B vitamins. Injections about twice a month of B-12 don't seem to cause the same problems, but the vitamins cause immediate (within a few days) strange sensations.....like someone's throwing water at my legs. It then gets worse from there.

It's true that we are all different in our reactions to different things....and one can soon have a pretty bill for vitamins and supplements in addition to medications. Hope you'll find some help. Yours, Lenora.
 
Messages
26
Likes
41
Hi Steve,

Many B Multi-vitamins are produced by fermentation processes, and many people (myself included) who have a constellation of symptoms that typically include OI are intolerant of fermented products (wine, cheese, chocolate, kombucha, tea, etc.) and several foods as grown (tomatoes, spinach, kiwi, papaya).
It is interesting that you have mentioned 3 foods that are extremely high in oxalates, chocolate, spinach, and kiwi. Oxalates are a plants natural defense against predation and are often considered anti-nutrients. Consuming oxalates in a quantity greater than what your body can eliminate can cause real issues.

Your body can also make oxalates endogenously due to cases of B-vitamin deficiency. This has been shown in studies with rats.

So how did I get here? When I went gluten free I decided to add 70% chocolate (high anti-oxidant flavenoids) and almonds and other nuts (healthy fats) to my diet. An early OAT test picked this up and I fell or got sucked into the oxalate rabbit hole.

So now I have cut back significantly on dietary oxalates and the B-vitamin supplement may be reducing the endogenous oxalate production.

So what happens when the blood level of oxalates goes down? It gives the body the signal to start dumping accumulated oxalates. This process can often cause significant and wide ranging symptoms.

So based on this I am wondering if my worsening symptoms could possibly be related to oxalate dumping or other detox effects caused by the B-vitamin supplement.

Hi Steve,

Just in terms of OI, I've had that since I was 4 years old. Diagnosed at 60. Adding salt and electrolyte supplements (Vitassium Saltstick and Liquid i.v.) really reduced my symptoms to about 10% of what they were before.
OI has somewhat improved over the last decade partly as I suspect by watching hydration more closely especially with outdoor activities in the summer NC heat and humidity. I now take much more electrolyte supplements all of which seem to have no detrimental effect on my blood pressure.
 

Wishful

Senior Member
Messages
4,598
Likes
8,387
Location
Alberta
Yes, B vitamins can cause problems with ME. Years ago, B2 made my general ME symptoms worse. I think I've become sensitive to it again, increasing brainfog, muscle aches, etc. I'll have to experiment more to make sure. B3 used to cause quite strong suicidal moods in addition to increasing general ME symptoms. I haven't retested it recently, but I still avoid high-niacin foods, just in case.

As Critterina said, individual B vitamins are cheap, so you can test each one to see if any cause any changes--negative or positive--to how you feel. You may want to avoid vitamin-rich (and vitamin enriched, such as wheat products) foods while experimenting, to see if avoiding vitamins makes a difference.

BTW, I was surprised by how quickly the body tries to get rid of excess B2. I think it took less than an hour for my urine to turn strongly yellow.
 

Pyrrhus

Senior Member
Messages
4,136
Likes
12,618
Location
U.S., Earth
I have confirmed on several occasions in a N=1 trial (myself) that this B vitamin supplement seems to make existing CFS/ME symptoms noticeably worse. Orthostatic hypotension gets noticeably worse as well as muscle pain and weakness. If I am just sitting around the house the worsening is subtle. However, if I do anything that involves physical activity such as cycling or hiking the symptom worsening is very noticeable.
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 basic tips that have personally helped me tolerate the start-up effects of B vitamins:
  1. As a general rule "start low and go slow", which means start with a low dose and very slowly increase the dose until the start-up effects go away.
  2. Before tackling folate or B12 supplements, first try taking a simple B vitamin supplement without any folate or B12, such as the B multivitamin called "B minus" from the company Seeking Health. This multivitamin includes all the B vitamins in relatively reasonable quantities, but without any folate or B12, allowing you to separately decide upon your own folate or B12 dosages. https://www.seekinghealth.com/products/b-minus-100-capsules
  3. Once you can tolerate the B vitamin supplement well, try adding 400mcg methyl-folate. Start with one dose, wait a couple days until the effects wear off, and then try the second dose. If you experience unusual muscle cramps, try taking low doses of potassium as many people find that a bit of potassium helps to lessen the start-up effects.
  4. Once you can tolerate 400mcg methyl-folate daily, try adding very small doses of hydroxy-B12. Again- start low and go slow. Different people can have very different reactions to B12. If you experience unusual muscle cramps, try taking low doses of potassium as many people find that a bit of potassium helps to lessen the start-up effects.
Hope this helps.

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/
 
Messages
26
Likes
41
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.
I don't think that I would classify these as "start-up" symptoms. I was taking the above supplement for several months or so before I was able to tie significantly worsening physical performance ability directly to the supplement. My FM doc prescribed it to fix methylation and medium high (12.5) homocystine issues. It did succeed in bringing my homocystine down to around 8.

In the interim while trying moderate the supplement dose I discovered the research of Dr. Lonsdale on thiamine deficiency. I started with 100mg/day of TTFD. It made some significant improvements in some of my OI symptoms namely orthostatic hypotension and EOE (eosinophilic esophagitis).

I also noticed another interesting thing with the TTFD initially it seemed to take a while for the adverse symptoms of the above B supplement to become noticeable. Now, when taking the TTFD the B supplement effects are nearly instantaneous.

Another interesting take-away is that the B supplement already has 100 mg of B1 - thiamine as thiamine HCL. So if thiamine was lacking it should have been made up by the thiamine HCL in the supplement. However, it seems that the TTFD was doing something the thiamine HCL wasn't.

So now the main issue appears to be excessive lactic acid production during physical activity much worse than I have ever experienced. On Monday I did the final leaf cleanup for the season. While I had some muscle pain while doing the work it appeared to get much worse in the evening and overnight significantly interfering with my sleep.

Can anyone elaborate on how lactic acid generation can tie into all of this?
 

Viala

Senior Member
Messages
367
Likes
995
I had similar experience with B multivitamin. It is a good idea to check each of B vitamins separately to find out which is causing problems and also their different forms, give it at least a few days to test each vitamin, best starting with really low doses like 100% RDA or even lower. These multivitamins can go up to 5000% RDA, so it can be way too much for someone who is sick.

I think that these multivitamins are not well balanced. There are couple of threads here about how some vitamins can massively deplete other vitamins, especially when they are taken in higher amounts and when we already have some deficiencies. I don't think that this have to be a start-up symptom. I have taken many supplements and if there were any start-up symptoms they were mild and tolerable, but when you feel significantly worse, it probably means that this is not good for you at this time. Trust your body and find out which one is problematic, B vitamins can be great for health, so definitely it is worth a try.
 

bertiedog

Senior Member
Messages
1,700
Likes
3,269
Location
South East England, UK
People with COMT mutations often don't do well with methylated vitamins and I am one of them. Any extra methylated vitamin but especially folate and B12 give me horrendous non stop migraines and this sort of response isn't unusual.

The only vitamin that I take at the moment is B2 100 mg and I have found I feel better not taking the others.

I have worked very hard the past year on my gut after a couple of Biomesight stool tests which gave me lots of ideas to follow up on but especially prebiotics and just a couple of specific strains of probiotics. I think that these have radically changed my body over the past 7 months as I have had to drop my thyroid meds to only a very small amount of 1 grain and 25 thyroxine and also I have had to reduce my adrenal medication too. My gut is also improved but certainly not perfect but I have much reduced symptoms, and many days none.

Having a really good diet will obviously help because you can then get the majority of vitamins and minerals from that but of course one needs a well functioning gut for that to happen, but I really do recommend having a stool test from a company like Biomesight because you will get personalised recommendations. BTW At the moment they are at half price here in the UK. Ken at CFS Remission also recommends a couple of other companies for people in the US.

Pam
 
Messages
26
Likes
41
I had similar experience with B multivitamin. It is a good idea to check each of B vitamins separately to find out which is causing problems and also their different forms, give it at least a few days to test each vitamin, best starting with really low doses like 100% RDA or even lower. These multivitamins can go up to 5000% RDA, so it can be way too much for someone who is sick.
There is so much in that multi that It would be hard to sort out the problematic ingredients. Currently my FM doc has taken me off of it so may never know.

I think that these multivitamins are not well balanced. There are couple of threads here about how some vitamins can massively deplete other vitamins, especially when they are taken in higher amounts and when we already have some deficiencies. I don't think that this have to be a start-up symptom. I have taken many supplements and if there were any start-up symptoms they were mild and tolerable, but when you feel significantly worse, it probably means that this is not good for you at this time. Trust your body and find out which one is problematic, B vitamins can be great for health, so definitely it is worth a try.
I think that this is also true and could also be individually different due to genetics. Sorting it all out becomes mind boggling.

I did try one experiment with an interesting result. I ran into Dr. Lonsdale's research (and book) on thiamine deficiency and thinking that this might be part of the issue so I decided to try the TTFD form of thiamine as it bypasses possible non-functional genetics and co-enzymes.

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.
 
Messages
26
Likes
41
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.
I don't think that I would call these start-up symptoms. I have been on/off this supplement several times. The first time it took a while for the side-effects to show up (or at least for me to notice them). Subsequently the side effects seemed to show up faster. Once I started trying TTFD they showed up almost instantaneously.

I have one of the MTHFR mutations and my FM doc is trying to fix methylation and lower homocystine which did go down from 12 to 8 while on the supplement.

Due to the continued side effects I have been taken off of the supplement entirely but left on 2 separate B vitamine supplements as follows:

B9 - 1000mcg DFE as Quatrafolic
B12 - 750mcg as Methylcobalamin, hydroxycobalamin, adenosylcobalamin,

I am also still taking the TTFD (100mg) which I am not sure is helping anymore.

So I am leaving out a lot of the other B vitamins. Is this a train wreck in slow motion?
 

Pyrrhus

Senior Member
Messages
4,136
Likes
12,618
Location
U.S., Earth
Due to the continued side effects I have been taken off of the supplement entirely but left on 2 separate B vitamine supplements as follows:

B9 - 1000mcg DFE as Quatrafolic
B12 - 750mcg as Methylcobalamin, hydroxycobalamin, adenosylcobalamin,

I am also still taking the TTFD (100mg) which I am not sure is helping anymore.

So I am leaving out a lot of the other B vitamins. Is this a train wreck in slow motion?
I'm afraid I don't know your medical or metabolic state, so I couldn't speculate on what would work for you. Everyone is different and most people have to go through a frustrating trial-and-error process to find out what works for them.

All I can say is that if your goal is to lower homocysteine, you might need B6, as that B vitamin is a cofactor for the metabolism of homocysteine. Many people just take the three B vitamins together: B6, folate (B9) and B12.

I haven't heard of TTFD before, that's certainly a new one to me.

Hope this helps.
 

Pyrrhus

Senior Member
Messages
4,136
Likes
12,618
Location
U.S., Earth
TTFD is the most bio-available form of Thiamine, vitamin B1. It is what Dr. Lonsdale used in his research on thiamine deficiency.
Remember that "more bioavailable" does not always mean "better".

The gastrointestinal tract has many mechanisms to increase or decrease the absorption of key nutrients, in accordance with the body's needs and the ability of the body to safely tolerate high doses of nutrients...
 

Living Dead

Senior Member
Messages
199
Likes
312
B1 -Thiamine HCL - 100mg
B2 -Riboflavin - 50 mg
B3 - Niacin 50mg
B6 - Pyridoxine HCL & Pyridoxal 5 Phosphate 50mg
B9 - Folate as Quatrefolic - 340mcg
B12 - Methylcobalimin - 250mcg
Biotin (as d-biotin) - 2mg
Pantothenic Acid - 100mg
Choline - (as Choline Dihydrogen Citrate) - 30mg
Trimethylglycine (TMG) - 200mg

Orthostatic hypotension gets noticeably worse
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.
 
Messages
26
Likes
41
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.
Thanks for the data point! So does this information come from personal experience or somewhere else? I am taking a separate supplement with B9 and B12:

B9 - 1000mcg DFE as Quatrafolic
B12 - 750mcg as Methylcobalamin, hydroxycobalamin, adenosylcobalamin,

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.