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Needing a high dose of 5MTHF eventually ??

Messages
62
I am doing pretty well in terms of having gotten lithium levels up! and surviving the detox reactions and metal dumping..... Which has been more than unpleasant. I had to back down to a dose of MTHF of around 200mcg every other day and then increase VERY slowly. This has taken about a year. I am still detoxing, and still have daily issues with Potassium low, but it is much more manageable.

As well as C677T ++, I have ++ s for some of the genes to do with Folate transport and Folate receptors..... So I am wondering what impact this might have on the dose of 5MTHF that I will eventually need ? My MCV has come down from 108 but has stuck at 101. Anyone had to eventually be on a maintenance dose of, say, 5 mg or so ? I am currently at 1mg twice a day.

The half moons on a couple of my fingers have come back..... not seen them for 20+ years !!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi Milford. I've just worked my way up to 10mg. I've increased 100-200mcg every day or 2, depending upon my symptom return. This last increase was after a week, so I hope I'm getting close to my optimal dose. I'm fortunate to have a very small set of symptoms that are reliable indicators (acne on face, outbreak on back of neck, or scalp, hair loss). Before I understood, I classed these as "detox", and lost handfuls of hair a year ago. Now my path has been easy, with very little extra K+ needed along the way. Best to you, ahmo
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@ahmo
If you don't mind me asking, what specifically are you using K+ for... ?
Working on increasing my mfolate too... S
@Star-Anise Hmmm. I got this in my inbox, but it doesn't appear on the thread...

I only understood some months ago that for years, my worst symptoms in terms of getting around, were K+ deficiency. I took K+ in those days, but never enough. Then I started needing big doses w/ adding Mfolate...rapid heart, sort of breathlessness, irritated. Once I was underway with regularly increasing my folate doses, this became less of a problem, partly because I was aware enough to act quickly. But I also discovered that if I increased my folate and then felt irritable, runny eyes...generally at night, bedtime or awakening...I could put a B12 under my gum and go to sleep, waken w/ no bad symptoms. It's been pretty much a breeze since then. :cool:

I have to add in here, I have ...never felt so good?... never felt better?....in almost all parameters, though I have no stamina re "being in the world". I'm just coming up to 11 years of disability/being disabled/being an invalid. Only 2 years ago I uncovered my lifelong gluten and dairy intolerances. Six months following that I began to understand that I was intolerant to sulfur and histamines; a year ago I was working w/ my genetic defects. And a year ago I overcame my fears and jumped into Freddd's Protocol.

I was very fearful at first, as I kept reading Rich's injunctions re these high doses are particular to Fred's idiosyncracies. But, I'd been working with Rich's SMP for a couple years, best as I could understand it. I had no knowledge of these forums, just the SMP I'd printed out in my searching. I could barely comprehend it. Those supps never worked for me. Now, I'm back in life. I'm no longer a survivor lurching from crisis to crisis. I added many supps, particularly minerals, before I started the protocol. Including lithium, per Amy Yasko. All of these together have totally changed my interiority. I have a quite mind for the first time in my life. I'm not jumping out of my skin, as I did to a small extent early in my life, but which almost drove me to suicide throughout 2011. I'm hoping the cognitive impairments are temporary, but, hey...I can write this, and without my arms freaking out.

I just decided it's time for me to learn about folate yesterday. I started w/ Wikipedia. It really scared me, retrospectively. I've clearly been folate/B12 deficient most/all my life. I was vegetarian for 30 years, which didn't help. Although my macrobiotic diet kept me away from a lot of folic acid in breads.

I even went to the Deplin website, wondering if I might get onto an rx version. I was knocked out to read there that Deplin is not considered a drug, because it is a medical food.
http://www.deplin.com/what-is-a-medical-food/
The Orphan Drug Amendment to the FDCA of 1988 defines “medical food” as a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.
Deplin® is a medical food for use under medical supervision.

I guess we should be glad about this, because it must be what enables us to get supps w/ no hassle. Anyway, I'm ranting here. I'm just saying that I absolutely recognize the primacy of taking this whole quartet of supps, along with an unfortunate array of others, in sustaining a quality of life. Blessings, ahmo
 
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PeterPositive

Senior Member
Messages
1,426
I am doing pretty well in terms of having gotten lithium levels up! and surviving the detox reactions and metal dumping..... Which has been more than unpleasant. I had to back down to a dose of MTHF of around 200mcg every other day and then increase VERY slowly. This has taken about a year. I am still detoxing, and still have daily issues with Potassium low, but it is much more manageable.

As well as C677T ++, I have ++ s for some of the genes to do with Folate transport and Folate receptors..... So I am wondering what impact this might have on the dose of 5MTHF that I will eventually need ? My MCV has come down from 108 but has stuck at 101. Anyone had to eventually be on a maintenance dose of, say, 5 mg or so ? I am currently at 1mg twice a day.

The half moons on a couple of my fingers have come back..... not seen them for 20+ years !!
Hi,
I am in a similar situation. C677T+/+, high serum Hcy, CFS-like symptoms for many years, recently started on active folate and B12.
Currently I can take 800-1200mcg but with the highest dose I am starting to see detox-like symptoms, pretty rough ones. Could be detox, could be paradoxical deficiency... very difficult to tell which is which, and in any case I guess the answer to both is going slow and don't overdo it.

I am not sure about the maintenance dose but I guess everyone is a little different, so it will probably depend on your needs of folate to function properly. What were your detox symptoms?
Do you also have high homocysteine?
 
Messages
62
Hi Milford. I've just worked my way up to 10mg. I've increased 100-200mcg every day or 2, depending upon my symptom return. This last increase was after a week, so I hope I'm getting close to my optimal dose. I'm fortunate to have a very small set of symptoms that are reliable indicators (acne on face, outbreak on back of neck, or scalp, hair loss). Before I understood, I classed these as "detox", and lost handfuls of hair a year ago. Now my path has been easy, with very little extra K+ needed along the way. Best to you, ahmo
Thank you... That must be really helpful, having a couple of symptoms that you seem to able to relate to dosage. How much b12 are you taking with this ?
Has your MCV changed as you have increased your dose ?
 
Messages
62
Hi,
I am in a similar situation. C677T+/+, high serum Hcy, CFS-like symptoms for many years, recently started on active folate and B12.
Currently I can take 800-1200mcg but with the highest dose I am starting to see detox-like symptoms, pretty rough ones. Could be detox, could be paradoxical deficiency... very difficult to tell which is which, and in any case I guess the answer to both is going slow and don't overdo it.

I am not sure about the maintenance dose but I guess everyone is a little different, so it will probably depend on your needs of folate to function properly. What were your detox symptoms?
Do you also have high homocysteine?
No, my Homocysteine was actually low.....4.5 I think. But I had CBS up regulation and BHMT 2, 4 and 8 all++, so that exacerbates the cbs drain...... Least ways it think that is what happened. I added TMG and that produced a detox.... For me this is a fluey feeling and a strong metallic taste in my mouth.
I don't understand what you mean by paradoxical deficiency..... Is it that methylation is started up... But that uses up the folate and then you become low again . If that were so, wouldn't backing off make that worse rather than better? if backing off makes you feel better then it is likely because of too much toxicity ??? Just theorizing....... No idea until I use myself as a Guinea Pig again.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@ Milford
Thank you... That must be really helpful, having a couple of symptoms that you seem to able to relate to dosage. How much b12 are you taking with this ?
Has your MCV changed as you have increased your dose ?

My homocysteine, when I got it checked a couple years ago, was high normal, nothing anyone was concerned about. Least of all me, who knew nothing...Anyway, re MCV, I just don't use lab tests. They haven't done me any real favors in the past.

My B12 moves up in tandem w/ folate. I just increased to 10mg MB12 + 7.5 AdB12. I use self-testing to work w/ my body re supps. I began this at the time I was becoming unwell, so I've had a long time to learn to trust the system, and I strongly urge all chronically unwell people to just jump into this and create a communication system with your body.

Re Paradoxical Insufficiency, I thought this was a particularly good thought about it from @whodathunkit yesterday:
http://forums.phoenixrising.me/inde...ion-needing-some-direction.28302/#post-432943
You might want to read up on “Paradoxical Folate Insufficiency”, too. Search it in the forum. I’m new here but have been reading A LOT, and it sounds like you were exhibiting symptoms of that. It’s Freddd’s theory and seems to hold true for many people (but not all).

Briefly, the theory is that in order to get well there are multiple levels of healing we must go through to reach wellness. Your first doses of folate start you on that healing. But if the dose is too low to affect *all* the necessary levels of healing, eventually the folate gets spread to thin and can’t keep the healing going. So you need progressively larger doses for a while, until you feel normal again. The progressively larger doses keep the healing going.

It’s like cars using gasoline (with the cars being the levels of healing and gas being the folate). One car can get pretty far on one gallon of gas...in the same way that if you only need to heal a little bit, a single 800mcg tab of folate will do you pretty well.

But if you have four cars and need to split that gallon of gas four ways...none of those cars are going to go very far. You need more gas (folate) or you just won’t go.

Adding more folate can keep the healing going so the healing keeps going.

Low potassium is also a sign of the paradoxical folate insufficiency. My understanding is that when sludgy cells that haven’t been using potassium in a while get kick-started by the folate/methylation supps, they suddenly start intaking potassium again, sucking all available potassium from your bloodstream (or wherever it comes from, like I said I’m new so still sorting it all out, LOL). So you need to add more potassium so your awakened cells can keep on using it, or eventually your cells will run out, making you feel crappy and causing other symptoms. It’s basically like a sponge needing more water to become saturated.

I’m no expert, just, like I said, a noob with a lot of what she’s read still fresh in her mind. And trying to explain what I’ve read to other people helps me sort things out in my own head.

Paradoxical insufficiency is when you’re taking a form of folic acid or folinic acid that your body can’t use, it blocks whatever methylfolate you’re intaking that your body *can* use, and thus causes deficiency. It’s a paradox because it seems like you’re getting the nutrients your body needs by the amount you’re taking. But you’re having weird and disturbing symptoms of poor health.

Freddd says donut hole only occurs with insufficient methylfolate. Some levels of healing/symptoms are slipping through the hole, I guess.

Read this thread, it gave me a better understanding of things

http://forums.phoenixrising.me/inde...rong-reaction-from-taking-methylfolate.21896/
 

Snowdrop

Rebel without a biscuit
Messages
2,933
@whodathunkit

I tried clicking on the bottom link to the post that Ahmo quoted. It doesn't seem to work.
Thanks for writing the post though. Helps me think it through.
 

Star-Anise

Senior Member
Messages
218
@ahmo
Funny story, I saw K+ and in my brain fog thought Vitamin K (which I recently discontinued) & asked the question, and then almost instantaneously thought - ah she means potassium, lol :) then I deleted my post.
I only understood some months ago that for years, my worst symptoms in terms of getting around, were K+ deficiency. I took K+ in those days, but never enough. Then I started needing big doses w/ adding Mfolate...rapid heart, sort of breathlessness, irritated. Once I was underway with regularly increasing my folate doses, this became less of a problem, partly because I was aware enough to act quickly. But I also discovered that if I increased my folate and then felt irritable, runny eyes...generally at night, bedtime or awakening...I could put a B12 under my gum and go to sleep, waken w/ no bad symptoms. It's been pretty much a breeze since then. :cool:
This, however, was very useful, so thank-you for responding anyhow! This is exactly what I'm feeling. I think I also read *caution* high doses of methylfolate, methylB12 posts, & was a bit scared about dosing huge too. But I have got some responses from others on forum here indicating that is the only way they were able to overcome weight gain/edema, so up I go! :)
 

whodathunkit

Senior Member
Messages
1,160
Last edited:

Snowdrop

Rebel without a biscuit
Messages
2,933
[I edited this post]

@ahmo and @Snowdrop: Here it is.

http://forums.phoenixrising.me/inde...rong-reaction-from-taking-methylfolate.21896/

FYI, if this link doesn't translate for some reason (I don't know why the other link truncated itself), do a "Google Site Search" from the search box, and put in the thread number 21896. Should come right up.

Also, the title of the thread is "Can the methyl folate trap and dhfr cause strong reaction from taking methylfolate".

Thanks the link works now.