Ah, so it is. I can't tolerate peppermint with my MCS tho. I actually can't tolerate pretty much all the sublingual type supplements.
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- Thread starter brenda
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Ah, so it is. I can't tolerate peppermint with my MCS tho. I actually can't tolerate pretty much all the sublingual type supplements.
Rand56
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Rand56
Senior Member
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hi hixxy
The amazon seller that I got mine from actually gets it from Austin Medical. Maybe you can check with them directly if they sell to individuals and if they ship international. It looks like they have an extensive assortment of Douglas Labs supps.
http://www.austinmedical.com/douglas-labs.html
Little Bluestem
All Good Things Must Come to an End
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Anemia of Chronic Disease
Take a look at post #24 in the Anemia of Chronic Disease thread:
http://forums.phoenixrising.me/showthread.php?17514-Anemia-of-chronic-disease-in-ME-CFS
This sounds a lot like what Christine is describing.
Take a look at post #24 in the Anemia of Chronic Disease thread:
http://forums.phoenixrising.me/showthread.php?17514-Anemia-of-chronic-disease-in-ME-CFS
This sounds a lot like what Christine is describing.
Useful tip. If you want to get a link to a specific post, right click the #number of the post and copy that link. It will take the person directly to the post.
Cheers.
Little Bluestem
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That would be:
http://forums.phoenixrising.me/show...ease-in-ME-CFS&p=258128&viewfull=1#post258128
Thanks.
http://forums.phoenixrising.me/show...ease-in-ME-CFS&p=258128&viewfull=1#post258128
Thanks.
Update on progress using B2 riboflavin
It has taken some time to get everything in place. I had to wait for WaterOz manganese to arrive as the chelated manganese I was using upset my stomach. The b12 took some time to sort out as I continued to use mb12 due to what I had read on here.
Christine thinks that we should not be using methyl doners. So after having problems after a good start, I stopped the m12 and started hydroxyb12 and have some adb12 coming to see which one works best. I had just educated myself on Freddd`s and rich`s protocols when I decided to go with Christine so I have had to rethink everything.
So now I am taking b2 a half hour before meals three times a day, and 125mcg of b12. This is a small amount yet there has been a discernible difference with it and an increase in energy. I am taking 37.5mg b2 and one and a half teaspoons WO manganese. I take probiotics, T3 and pregnenalone and thats it. I had some muscle pain in my calves so took a small amount of magnesium.
For b vitamins I am using raw cheese, and having no problems with it whereas before I avoided dairy.
I have found that it is vital to get the balance right and the way to tell it is, is through the colour of stools. If they are too light that means not enough manganese and I have reacted to too much folic acid in food, which I was told to reduce. It seems that this was the reason my very high vegetable diet did not help me.
I have a good gut feeling about what I am doing. I am more in tune with whats going on in my body and there are good signs. My sleep is still good and I have started to have dream recall. I am functioning better mentally. Although there are some days when I am wiped out, the trend is up.
I like the way that the protocol seems to be working WITH the body and not overdriving anything. As I am very sick, I feel that this is the correct way for my healing.
I am still waiting for my new hair analysis to come and more fine tuning.
After reading posts by Annesse I will start on sauerkraut. At last I feel I am really getting somewhere.
It has taken some time to get everything in place. I had to wait for WaterOz manganese to arrive as the chelated manganese I was using upset my stomach. The b12 took some time to sort out as I continued to use mb12 due to what I had read on here.
Christine thinks that we should not be using methyl doners. So after having problems after a good start, I stopped the m12 and started hydroxyb12 and have some adb12 coming to see which one works best. I had just educated myself on Freddd`s and rich`s protocols when I decided to go with Christine so I have had to rethink everything.
So now I am taking b2 a half hour before meals three times a day, and 125mcg of b12. This is a small amount yet there has been a discernible difference with it and an increase in energy. I am taking 37.5mg b2 and one and a half teaspoons WO manganese. I take probiotics, T3 and pregnenalone and thats it. I had some muscle pain in my calves so took a small amount of magnesium.
For b vitamins I am using raw cheese, and having no problems with it whereas before I avoided dairy.
I have found that it is vital to get the balance right and the way to tell it is, is through the colour of stools. If they are too light that means not enough manganese and I have reacted to too much folic acid in food, which I was told to reduce. It seems that this was the reason my very high vegetable diet did not help me.
I have a good gut feeling about what I am doing. I am more in tune with whats going on in my body and there are good signs. My sleep is still good and I have started to have dream recall. I am functioning better mentally. Although there are some days when I am wiped out, the trend is up.
I like the way that the protocol seems to be working WITH the body and not overdriving anything. As I am very sick, I feel that this is the correct way for my healing.
I am still waiting for my new hair analysis to come and more fine tuning.
After reading posts by Annesse I will start on sauerkraut. At last I feel I am really getting somewhere.
Asklipia
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Thank you Brenda for this information. Do you have an idea why she thinks we should not use methyl donors? Does that include metafolin?
Sorry I have nothing to contribute except questions!
Hanna
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Thanks for your update Brenda. One little question : is there a reason why you take the B2 30 mn before meal? Should it be taken on empty stomach?
I am glad you see some positive reaction already. I am slowly making adjustments with the B12 too and it is not so easy to switch my mind from Freddd's protocol I was on. I intend to try HydroxyB12.
I am glad you see some positive reaction already. I am slowly making adjustments with the B12 too and it is not so easy to switch my mind from Freddd's protocol I was on. I intend to try HydroxyB12.
Metafolin is a methyl donor.
Christine blanket recommending everyone supplement b2 for CFS and not supplement methyl donors seems to not take into account any individuality.
If someone has MTHFR mutations -- homozygous in particular, this would be an incredibly stupid thing to do.
Even if some of the other genetic SNPs investigated on these forums aren't confirmed in their impact on our disease, MTHFR has huge evidence behind it as far as contributing to a large number of diseases.
As always be critical with all advice you get. I even apply this to trained professionals. I've had them hurt me far too many times to count!
Out of interest Brenda, did you get any benefit from taking MB12 before following Christine? And what sort of dose were you tking? Thanks Sjb944
I was taking 125mcg and did not feel any benefit which is strange as I did after taking the same
dose of hydroxob12 especially in not being able to take it sublingually well not very much of it
Do you have an idea why she thinks we should not use methyl donors? Does that include metafolin?
Asklipia, She believes that most of us have b2 depletion and once that is corrected, and other factors are in place like manganese, the methylation cycle will come up itself and taking methyl doners will force things too much I suppose like giving a remedy without fixing the source of the problem., I hope I have this right. There is so much to rethink and learn. She says that just because we are short of something it does not mean that the best way is to replace it when there is something else underlying the deficit.
One little question : is there a reason why you take the B2 30 mn before meal? Should it be taken on empty stomach?
Hanna, yes on an empty stomach I guess so that there is nothing there to `take it down`.
Christine blanket recommending everyone supplement b2 for CFS and not supplement methyl donors seems to not take into account any individuality.
If someone has MTHFR mutations -- homozygous in particular, this would be an incredibly stupid thing to do.
Even if some of the other genetic SNPs investigated on these forums aren't confirmed in their impact on our disease, MTHFR has huge evidence behind it as far as contributing to a large number of diseases.
As always be critical with all advice you get. I even apply this to trained professionals. I've had them hurt me far too many times to count!
hixxy, Christine has found by looking at the hair charts that there are similarities and thinks that many who do not have ME/CFS have this problem too as well as b12 deficiency. She does give recommendations individually based on hair samples and doses will vary plus the other factors we need.. I really don`t know how her treatment plan would develop for folk with MTHFR.. She is not into diagnoses so much as treating deficiencies as she finds them.
I certainly dont feel I am taking any risks as the doses are not huge and there is at least no risk of hospital admission for life threatening conditions arising. Now that really would scare me!
I was taking 125mcg and did not feel any benefit which is strange as I did after taking the same
dose of hydroxob12 especially in not being able to take it sublingually well not very much of it
Do you have an idea why she thinks we should not use methyl donors? Does that include metafolin?
Asklipia, She believes that most of us have b2 depletion and once that is corrected, and other factors are in place like manganese, the methylation cycle will come up itself and taking methyl doners will force things too much I suppose like giving a remedy without fixing the source of the problem., I hope I have this right. There is so much to rethink and learn. She says that just because we are short of something it does not mean that the best way is to replace it when there is something else underlying the deficit.
One little question : is there a reason why you take the B2 30 mn before meal? Should it be taken on empty stomach?
Hanna, yes on an empty stomach I guess so that there is nothing there to `take it down`.
Christine blanket recommending everyone supplement b2 for CFS and not supplement methyl donors seems to not take into account any individuality.
If someone has MTHFR mutations -- homozygous in particular, this would be an incredibly stupid thing to do.
Even if some of the other genetic SNPs investigated on these forums aren't confirmed in their impact on our disease, MTHFR has huge evidence behind it as far as contributing to a large number of diseases.
As always be critical with all advice you get. I even apply this to trained professionals. I've had them hurt me far too many times to count!
hixxy, Christine has found by looking at the hair charts that there are similarities and thinks that many who do not have ME/CFS have this problem too as well as b12 deficiency. She does give recommendations individually based on hair samples and doses will vary plus the other factors we need.. I really don`t know how her treatment plan would develop for folk with MTHFR.. She is not into diagnoses so much as treating deficiencies as she finds them.
I certainly dont feel I am taking any risks as the doses are not huge and there is at least no risk of hospital admission for life threatening conditions arising. Now that really would scare me!
Hi Brenda
You say Christine thinks 'we' should not be taking methyl donors. Who is the 'we' here? Presumably only those she's tested and said are low on B2?
Jenny
Asklipia
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Thank you for your answer brenda.
If I understand it right, this leaves us with a protocol which would try to reestablish the methylation cycle by taking B2 and manganese for a while. Hoping for the best, since if the methylation cycle is restored, the B12 deficiency and other deficiencies might correct themselves after a while.
Am I correct?
The crash and detox effects than happen with mb12 and metafolin (I think someone has reported that last one alone?), defined by Freddd as paradoxical folate deficiency would be avoided. Is that the aim of not taking methyl donors?
However I find that taking B2 and manganese does bring me that same crash and detox after a few days. Is this a proof that the methylation cycle is working again? Going into overdrive maybe? Sorry I am not too clear about all this.
I suppose the proof is in the pudding. Are any of the people on the B2-manganese/methyl donor avoidance people getting any better after x days of that protocol?
I am getting better in some respects after 3 weeks on B2 (12.5 to 25 mg/day) and manganese (10 mg every other day). More energy, deeper breath, more dreams but awful. Some things are getting worse: sleep agitated and shorter, hearing loss, vague nausea sometimes, irritation of the eyes and joints.
Maybe three weeks is not much, but I was hoping for more!
I agree.
As to taking the B2 before meals, I thought it could be during and after meals too, since the absorption of riboflavin is enhanced by bile, so the presence of a bile producing meal is a help.
Hanna
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Thanks Brenda. Will try it on empty stomach.
Hi hixxy, where did she recommend this for everyone?
Hi Shellbell, the form of manganese seems to be the most important distinction she has made. Manganese tablets perform extremely poorly compared to the WaterOz. Manganese absorption is generally very low from the papers I've read, 2% to 4%.
David