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Fatigue gone but "jittery and stressed" please please help

Messages
31
Just to say thank you in advance for reading this post....

Quick summary....4 years of declining health, unresolved leaky gut and multiple food intolerances, complete fatigue, diagnosed 20 years ago with ME. Multiple miscarriages and foetus' with chromosome disorders.Live in uk, so MTHFR doesn't exist here!!!

I've tried Thorne b complex snd yippee my body doesn't ache or feel stiff anymore and my spine feels flexible and best of all I have loads of energy, no depression, brain fog gone

Trouble is I'm on day 5 of supplement, but feel very "stressed" and jittery, making sleep difficult and am scared to death I will crash soon

I've Reduced dose, but should I stop taking until jitteriness abates? Should I then just try taking 1/4 of capsule ? Or should I try a supplement with much lower dosages and if so which one?

Presumably my reaction means I have MTHFR issues, but what should I do next?? A 23 and me report or blood tests etc....

I do have problems with glutamates, bone broth etc giving me that supercharged feeling, I think it's called exosomething

The ingredients of supplement are
Thiamine 40 mg 2.667 rad
Niacin. 28.6 1.88 rda
B6. 80mg. 400 rda
Folate 200mg calcium folate 200 mg l5 methltetrahydrofolate
B12. 600 mcg 10000 rda
Biotin 80 mcg 27% rda
Pantothenic acid 45mg 450 rda

Would really appreciate anyone's advice help as GPs are useless and have wasted a lot of money already with specialists trying to solve food intolerances....and just feel am fumbling around in the dark..... It's so nice for awful fatigue has gone but obviously I'm doing something wrong
 
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xrunner

Senior Member
Messages
843
Location
Surrey
I've Reduced dose, but should I stop taking until jitteriness abates? Should I then just try taking 1/4 of capsule ? Or should I try a supplement with much lower dosages and if so which one?
I'd stop everything and wait. B vitamins can cause insomnia. If symptoms subside then you'll know for sure it was the Bs.

Presumably my reaction means I have MTHFR issues, but what should I do next?? A 23 and me report or blood tests etc....
When I was healthy I did not have reactions to any supplements. Then I got sick and started to react to most vitamins, minerals and a lot of other stuff. Later with recovery reactions began to subside and then disappear. All the while I carried MTHFR and other polymorphisms. As far as CFS/ME is concerned that information is just irrelevant.
Our weird reactions and sensitivities to supplements and everything else are probably, but I'm sure in my case, due to immune abnormal reactions.
You may get some success correcting those sensitivities (there's no guarantee) by working on your gut, esp. if there are abnormal imbalances in flora or harmful microbes.
 

caledonia

Senior Member
Just to say thank you in advance for reading this post....

Quick summary....4 years of declining health, unresolved leaky gut and multiple food intolerances, complete fatigue, diagnosed 20 years ago with ME. Multiple miscarriages and foetus' with chromosome disorders.Live in uk, so MTHFR doesn't exist here!!!

I've tried Thorne b complex snd yippee my body doesn't ache or feel stiff anymore and my spine feels flexible and best of all I have loads of energy, no depression, brain fog gone

Trouble is I'm on day 5 of supplement, but feel very "stressed" and jittery, making sleep difficult and am scared to death I will crash soon

I've Reduced dose, but should I stop taking until jitteriness abates? Should I then just try taking 1/4 of capsule ? Or should I try a supplement with much lower dosages and if so which one?

Presumably my reaction means I have MTHFR issues, but what should I do next?? A 23 and me report or blood tests etc....

I do have problems with glutamates, bone broth etc giving me that supercharged feeling, I think it's called exosomething

The ingredients of supplement are
Thiamine 40 mg 2.667 rad
Niacin. 28.6 1.88 rda
B6. 80mg. 400 rda
Folate 200mg calcium folate 200 mg l5 methltetrahydrofolate
B12. 600 mcg 10000 rda
Biotin 80 mcg 27% rda
Pantothenic acid 45mg 450 rda

Would really appreciate anyone's advice help as GPs are useless and have wasted a lot of money already with specialists trying to solve food intolerances....and just feel am fumbling around in the dark..... It's so nice for awful fatigue has gone but obviously I'm doing something wrong

My suggestion would be to stop the supplement for now. You can use 50-100mg of the nicotinic acid form of niacin to get relief from the reaction. Per Ben Lynch, you can dose every 4 hours or even as much as every hour or half hour as necessary. It might take several days to get it all calmed down.

The miscarriages and birth defects suggest MTHFR mutations and folate deficiency. Your reaction suggests some B vitamin supplementation would be helpful, if you can dial it in without jitteriness.

You might have COMT mutations in which case too many methyl groups may cause mood swings. Or CBS may be expressed, in which case CBS treatment may be helpful. Ben Lynch has additional ideas - google his name and "Methylfolate Side Effects".

See my signature link for the two documents, Start Low and Go Slow and Roadblocks to Successful Methylation Treatment which have many tips for dialing in methylation in a safe manner.
 
Messages
31
Thank you @caledonia for your great answer, it was really reLly kind of you to respond. do you think it would be worth me doing a 23 and me test, as a starting point?

I will go and get some niacin tomorrow

Once reactions stopped....Do you think it would be worth trying the Thorne Capsulises at a much smaller dose or would I be better off just introducing one thing at a time? Like uk version of rich protocol (all from iherb)
Hydroxocobalmin and folic acid
Life extension mutli vit
Methyfolate

Sorry to trouble you with such fundamental questions, but would really appreciate a bit of advice (sorry to be such a pain)

Jane
 
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Messages
31
I'd stop everything and wait. B vitamins can cause insomnia. If symptoms subside then you'll know for sure it was the Bs.


When I was healthy I did not have reactions to any supplements. Then I got sick and started to react to most vitamins, minerals and a lot of other stuff. Later with recovery reactions began to subside and then disappear. All the while I carried MTHFR and other polymorphisms. As far as CFS/ME is concerned that information is just irrelevant.
Our weird reactions and sensitivities to supplements and everything else are probably, but I'm sure in my case, due to immune abnormal reactions.
You may get some success correcting those sensitivities (there's no guarantee) by working on your gut, esp. if there are abnormal imbalances in flora or harmful microbes.
Thank you xrunner for your most helpful response
Jane xxx
 

caledonia

Senior Member
Thank you @caledonia for your great answer, it was really reLly kind of you to respond. do you think it would be worth me doing a 23 and me test, as a starting point?

I will go and get some niacin tomorrow

Once reactions stopped....Do you think it would be worth trying the Thorne Capsulises at a much smaller dose or would I be better off just introducing one thing at a time? Like uk version of rich protocol (all from iherb)
Hydroxocobalmin and folic acid
Life extension mutli vit
Methyfolate

Sorry to trouble you with such fundamental questions, but would really appreciate a bit of advice (sorry to be such a pain)

Jane

I think it would be worthwhile to at least find out if you have COMT mutations or not, and what your MTHFR and MTR/MTRR (B12) and mutations look like, so that's a yes on 23andme.

I think if you retried the Thorne at a dose small enough to not be jittery, you may not get the same energy. It may be best to do the B vitamins individually to see which ones are helpful and which ones are problematic.

As far as the UK version of the Rich protocol, I would say yes to experimenting with hydroxycobalamin. If you do have COMT mutations, that might be a good one.

No to any kind of folic acid. (Unless you mean folinic acid?) It you have COMT mutations, it might be worthwhile experimenting with folinic acid.

The Life Extension multi could be problematic, as it has many ingredients. You're basically getting all the same stuff as the Thorne again, so it could make you jittery.

No to methylfolate if you're taking the Life Extension as it already has 400mcg of methylfolate in it. If you have COMT mutations methylfolate may need to be taken with some niacin to cushion it.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Your reaction suggests some B vitamin supplementation would be helpful, if you can dial it in without jitteriness.
This is what I agree with most. Reading your post, @Scoobieworld , my first thought was take a day off, see how you're feelling, and adjust accordingly; "dialing it in" - through trial and error while taking good notes as to what you're doing and how you're feeling will be key.
Yes, I like 23andMe. I also like a CBC, CMP, and amino acid panel for lab tests. And depending on symptoms, maybe some others.
Wishing you well.
 
Messages
31
Thank you @caledonia for all your time taken in replying to me, so much appreciated. Your a star.

I am going to organise 23 and me test after this posting as it seems essential. So thanks for that.

I have stopped taking the Thorne multi, still feel completely wired and stressed so looking forward to nicotinic acid arriving tomorrow. Interestingly all my food cravings, which completely disappeared whilst taking Thorne supplement have returned, I can only assume my body is craving foods to try and fulfill my nutritional defiencies? Have you heard of this? Am sure this all must be connected to my mutiple food intolerances/leaky gut symptons. Any thoughts?

1. So once everything is back to normal, do you think first step would be to introduce Hydroxycobalamin at a dose of 1.25mg once a day. If I tolerate this do I carry on increasing the dose, if so at what dose do u stop? When you energy returns? Do you think it would be worth taking lithium orate to drive B12 into my cells ( I'm just going to hospital tomorrow to get "homesytecine" and standard bloods taken)

2. Is the next step to introduce remaining b vitamins? If so in what order should I take them ( sorry I don't know where to research this) would you recomend any specific brands or supplements to use. My sister is in states for next week so I can ship USA supplements to her if I'm quick.

3. After this do you introduce methyfolate and niacin...could you tell me the reason for doing it I. This order as am really interested and need to learn so much. What would be the best supplement or type of methyfolate to use

4. Alternatively do you suggest I wait for 23 and me results as I could damage my health even more by "fumbling around in the dark" The trouble is having all that lovely energy is addictive, I felt the best I had done for years a few days ago..or is there another protocol I could use given my reaction to the multi.

Do you have any suggestions as to the best way I go about educating myself to MYTHR and all it's implications, ie an online course or book??

Thank you so much again, I wish I could buy you a bunch of flowers to say thank you xxxx
 
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Messages
31
Hello @Critterina

Thank you for your response too, really kind of you. Yes I've completely stopped the Thorne supplement, as am completely wired/ feeling stressed and having real difficulty sleeping. I went to my doctors last week to get my "homosteine" (sorry wrong spelling) checked and standard blood tests, so am booked to go to hospital tomorrow to get these done again

Xxxx
 

caledonia

Senior Member
Thank you @caledonia for all your time taken in replying to me, so much appreciated. Your a star.

I am going to organise 23 and me test after this posting as it seems essential. So thanks for that.

I have stopped taking the Thorne multi, still feel completely wired and stressed so looking forward to nicotinic acid arriving tomorrow. Interestingly all my food cravings, which completely disappeared whilst taking Thorne supplement have returned, I can only assume my body is craving foods to try and fulfill my nutritional defiencies? Have you heard of this? Am sure this all must be connected to my mutiple food intolerances/leaky gut symptons. Any thoughts?

1. So once everything is back to normal, do you think first step would be to introduce Hydroxycobalamin at a dose of 1.25mg once a day. If I tolerate this do I carry on increasing the dose, if so at what dose do u stop? When you energy returns? Do you think it would be worth taking lithium orate to drive B12 into my cells ( I'm just going to hospital tomorrow to get "homesytecine" and standard bloods taken)

2. Is the next step to introduce remaining b vitamins? If so in what order should I take them ( sorry I don't know where to research this) would you recomend any specific brands or supplements to use. My sister is in states for next week so I can ship USA supplements to her if I'm quick.

3. After this do you introduce methyfolate and niacin...could you tell me the reason for doing it I. This order as am really interested and need to learn so much. What would be the best supplement or type of methyfolate to use

4. Alternatively do you suggest I wait for 23 and me results as I could damage my health even more by "fumbling around in the dark" The trouble is having all that lovely energy is addictive, I felt the best I had done for years a few days ago..or is there another protocol I could use given my reaction to the multi.

Do you have any suggestions as to the best way I go about educating myself to MYTHR and all it's implications, ie an online course or book??

Thank you so much again, I wish I could buy you a bunch of flowers to say thank you xxxx

You're welcome.

I'm not sure about the food cravings. It could be due to several different things. I'm trying to think of what would clear up quickly with B vitamins. Maybe hypoglycemia? Mine has improved too.

Yes, I would start with whatever form of B12 you want to try. 1.25mg is a large amount to start with though. If you can divide it that small, something more like 50-100 mcg would be better. You can always increase as tolerated. That way, if you're going have a bad reaction, it won't be nearly as intense. If that's going well, then add folate.

There is another startup reaction which can occur in people who are physically debilitated, like ME patients, and that's an greatly increased need for potassium. You should also have a potassium supplement on hand before starting. I use Now Potassium Gluconate powder as do a lot of others on here.

The niacin is in case you have COMT mutations. It will help cushion the effect of the methyl groups. It's also in case you get overmethylated and need to quickly shut down the methylation cycle reaction. Otherwise, it can keep cranking for many days or even weeks.

Right now it's hard for me to say if you're having COMT issues, CBS issues or potassium deficiency issues or just straight up overmethylation. All four could cause some anxiety.

Yes, you are kind of stumbling around in the dark right now. I think 23andme is running about 6-8 weeks for results.

A COMT reaction is typically mood swings, i.e. anxiety and depression. Potassium deficiency can be things like anxiety, heart palpitations, ringing in the ears, muscle twitches, etc., very similar to magnesium deficiency. The classic CBS symptoms are a stress/anxiety reaction. For me, it was similar to a very stressful week at work - feeling nervous, butterflies in the stomach, tight sore trapezius muscles. One person reported headaches. Overmethylation feels like being revved up and overstimulated, unable to settle down.

So if you could differentiate it by symptoms, it would be helpful. There are different treatments depending on which thing is happening.

Look in my signature link (it says Caledonia's Methylation Links in blue at the bottom of all of my posts). I have a beginners video series called Methylation Made Easy and the documents "Start Low and Go Slow" and "Roadblocks to Successful Methylation Treatment". Then links to the sources I drew from. Heartfixer is a good resource, but a little more advanced.
 
Messages
31
Sorry to bother you again @calendonia, I've now implemented
Methyl folate 400 microgram
P5p 50 mg
Hydroxycobalamin b12 1000mcg

I've had no adverse reactions,but godawful fatigue has returned, not sure whether wired and jittery was better, at least I had energy. I have got diarreah and very irritable, so am wondering about paradoxical folate deficiency, but am a bit worried about increasing methyl folate....any thoughts?
If it's any help I don't seem to have any symptons of COMT, CBS or Potassium deficiency.


Thank you

Jane xx
 
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