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Some questions - please help

Messages
24
Hello,

I am a middle-aged woman from Germany, suffering from CFS for many years now.

I have read through this forum for quite a while, but there are still things I do not understand, due to my low cognitive abilities or because English is not my mothertongue, I don’t know. But it is hard to read this stuff in a foreign language with brainfog!

So I would be very happy, if you could help me with some answers.

Now the facts. I started the protocol some months ago with some basics (A,C,D, E and potassium). Then I started AB12 and MB12, 100µg absorbed each, three weeks ago.

On Monday (three days before) I started with 4x100µg Methylfolate and had terrible lightheadedness some minutes after taking it for about 1,5hours. I read through the list of symptoms and found it in group 3, folate deficiency. So I increased the dose to 4x200µg the next day.
At noon an overwhelming fatigue started which held on the whole day. This morning was ok, so I again took 4x200µg of folate. At noon the overwhelming fatigue came back again.
I am asking myself, if there is something wrong.
  1. Should I reduce the dose? Or do I have to take something else in addition in order to get rid of the fatigue?
  2. How is Paradoxical Folate Deficiency defined? How can I differentiate it from insufficiency?
  3. What does donut hole mean?
  4. Looking at Freddd’s Symptom List, Version 2 – 01/09/2014, I would like to know, if these symptoms improve by the taking of the particular nutrient or do they accur/worsen?
Thanks in advance for your help,
Wickie
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Since your symptoms started after introducing folate, I'd try decreasing, not increasing it.

The 2nd link in my signature is to a compilation of Fred's comments. Page 17 talks about paradoxical/ partial block:
http://forums.phoenixrising.me/index.php?threads/paradoxical-folate-deficiency- insufficiency-and-edema.26944/unread

Freddd: The body is said to have a “triage” system for distribution, or maybe utilization of, b12 and folate. Healing can turn on with methylation and ATP startup and yet deficiency symptoms can worsen on other layers. The placement of edema within a layer can be done by the symptoms set it responds with; angular cheilitis, IBS and acne type lesions, and others, depending upon duration and severity of insufficiency.


http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and- healing.21725/page-10
Perhaps I can help distinguish between different levels of things.

Partial methylation block creeps up on you.Paradoxical folate deficiency, several levels, creeps up on you except when suddenly induced
MeCbl body and/or CNS creeps up on you
AdoCbl body and/or CNS partial mito blockage creeps up on you

AdoCbl/LCF-CNS partial mito blockage can correct like a ton of bricks especially with anxiety present.

When MeCbl gets low enough Methyl-trap (severe mfolate deficiency symptoms, CNS and/or body) - hits like a ton of bricks and so does getting out of it

When AdoCbl/LCF gets low enough below a certain ATP generation level, sometimes muscles switch to workaround with lactic acid, prodcution, 1/6 energy. A different group of researchers from Rich (local to where I live) was looking for this situation, I had it. It hits like a ton of bricks and so does it’s correction.

Methy-trap and Partial mito block (or something) together may set off each other or by the same stress; combined hits like 10 tons of bricks, and so do their corrections
From page 10 of the Guide:
Folate Deficiency

http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/page-145

Increasing MeCbl quantities isn’t likely to change the amount of l-methylfolate needed. Adding AdoCbl might increase need somewhat because it opens up other layers of healing. Deplin is Metafolin which is a specific stable form of l-methylfolate You are aiming for the amount that will keep you out of paradoxical folate deficiency/insufficiency. It might be 4mg it might be 30mg. At this point I’m inclined to say that having to go as high as 30 probably indicates a lack of other things. I found that I reached that point fastest by increasing the dose by 50%-100% a day until the symptoms were fully controlled or at least visibly healing, which now goes to my earliest onset symptom, retaining water. After dropping the extra B1, B2 and B3 I appeared to have folate deficiency minimized but after a few months the skin around my fingernails is too ragged. It is appears to be the most mild symptom that takes months to show. So I have increased my dose to 8mg a day, from 4 to try for the next few months and see what heals. Things get slower as you pick off the quick incremental changes.

http://forums.phoenixrising.me/index.php?threads/ow-muscle-cramps-keeping-me-up-at- night-and-leading-to-permanent-injury.27753/#post-423306

Methylfolate doesn’t cause methyltrap. It is what is being blocked or trapped Lack of MeCbl causes methyltrap. Glutathione/NAC can cause methyltrap. Folic acid and folinic acid appear to cause partial methylation block as opposed to methyltrap unless it is effective and then a shortage of MeCbl causes methyltrap or partial methylation block. That is a problem with folic and folinic acid is that one never knows what the result means, it can mean that it is working or not working, depending upon the person’s own response and their MeCbl content. Keeping methylfolate “below” MeCbl amounts will cause endless donut hole paradoxical folate deficiency. There is almost no relationship between amount of MeCbl and amount of Methylfolate that might be needed.
 
Messages
24
(I am the husband of Wickie and writing this on behalf as due to her severe condition she is not able to read and post in the forum at the moment)

Dear ahmo,
Thanks a lot for your answer and suggestion to reduce the amount of folate. Frankly speaking I/we can’t understand the logic behind. Wickie has increased the amount of folate as we thought the symptoms she got are fitting to the symtoms listed as “Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency”. As far as we understand the list, those symptoms appear when starting the protocol and taking not enough folate.

1.Could you point out why you think she should reduce the amount of folate?
We read a lot in the forum and studied your guide, however it might be due tour language capability that we don’t understand the issue!

2.Do other starter of Freddd’s protocol have the same negative reaction and what do they do?

In addition to that, we still have some difficulty in understanding the meaning of the latest symptoms-list and the meaning of the “donut hole”. Could someone help us and answer the question 3 and 4 of the first post?


3.What does donut hole mean?
(there is no similar expression in German….)

4.Looking at Freddd’s Symptom List, Version 2 – 01/09/2014, I would like to know, if these symptoms improve by the taking of the particular nutrient or do they occur/worsen?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
On Monday (three days before) I started with 4x100µg Methylfolate and had terrible lightheadedness some minutes after taking it for about 1,5hours. I read through the list of symptoms and found it in group 3, folate deficiency. So I increased the dose to 4x200µg the next day.
4x100 is already a good sized dose. To then double it the next day is a lot. Fred's advice to me was to increase 100-200mcg (100µg) every day or 2.

Yes, other people have problems. Some can only take crumbs as a dose. For me, increasing folate often, not always, led to histamine issues, speediness. I don't know how to evaluate your fatigue. All my knowledge is, quite frankly, of my personal experience.

It's not always clear what the symptoms indicate:
page 17 of my FP compilation:
http://forums.phoenixrising.me/index.php?threads/under-methylation-over-methylation- and-precursers-laymans-version.1740/page-2
Under and Over methylation symptoms and characteristicsFreddd: Here is a collection of symptoms, signs and chracteristics of overmethylators and undermethylators from several sources. A few specific items are footnoted. I found the specific interesting. The consensus as to which is what is a bit fuzzy. Some things like depression show up on both lists according to different people. Many of the symptoms on BOTH lists are active b12 and folate deficiency symptoms. As far as response to b12 and folates are concerned, I’m just including what the sources say, not what I think. The ONLY thing they are all (sources) in full agreement on is response to SAM-e.

My experience prompts me to use a different terminolgy from under and over methylators. These are all genetic tendencies at best. In actual practice I have found that people are very often “depleted methylators” or maybe in different terminology “blocked methylators” regardless of what their genetic tendencies theoretically are. Many of these assumptions come from a backround of tests performed on people that are chronically deficient of active folate and active b12s. I had approximately equal numbers of active b12/folate deficiency

symptoms from BOTH lists of “under” and “over” methylators. To this day I can’t tell you what I actually am in that schema as it just doesn’t make sense in terms of what was wrong and what fixed it. Active b12s with Metafolin, as many active b-complex components as possible, basic cofactors and selected critical cofactors all played their part in fixing my symptoms from BOTH lists allowing my body to be healthy and normalized. Personally I thionk way to much attention is applied to the over/under situation, both of which may be artifacts of inactive pseudo vitamins and how people respond to those.
There's a whole thread here re donut hole. I'm pretty certain it's a term Fred made up.
http://forums.phoenixrising.me/inde...to-get-out-of-donut-hole-insufficiency.22614/
The nature of paradoxical folate deficiency/insufficiency, donut hole type, appears to have a specific characteristic; the dose required to end insufficiency appears to keeps changing. Let’s look at how that happens.

Let’s say a person starts with a 200mcg dose of Metafolin with sufficient MeCbl-AdoCbl to start healing. In about three days frequently occur low potassium and/or donut hole folate insufficiency as a set of symptoms often called “detox”. The folate insufficiency symptoms can be relieved by taking enough Metafolin. If a person titrates at 200mcg per day they likely will not resolve the symptoms. That is because the additional folate generates additional need and plenty of time to start even more healing.

So the question comes up, what does it take to actually get out of Donut Hole Folate Insufficiency whether from Folinic Acid or l-methylfolate.

IF a person starts at 200mcg and gets donut hole folate insufficiency started in 3 days THEN IF they drop to 100mcg the symptoms get worse or stay the same

ELSE IF they raise by 200mcg daily increase once per week THEN the donut hole folate insufficiency stays about the same or may worsen.

ELSE IF they raise the methylfolate dose to 800mcg to 1600mcg each dose (4-8x previous dose) THEN

The folate insufficiency symptoms may reduce or go may away for some days to weeks or more until the amount of healing catches up to and exceeds the new dose available. Then insufficiency comes back.

The key to stopping folate insufficiency is to get ahead of the healing that gets started. Often several doses of 4x the size of the current dose each 3 hours will generally make a noticeable difference in one day. Several successive doses of 8x as much will make a more definite difference quicker, often in one dose. Inflammation that takes weeks to get going doesn’t heal right away but will subside over a number of days of adequate dose and the difference can often be felt in hours.


Methylfolate Bands of Sufficiency

1. 800mcg with no healing startup apparent, no donut hole insufficiency symptoms

2. 2400-4800mcg , healing startup with perhaps no folic or folinic or veggie folate difficulties and only donut hole insufficiency

3. 6000- 9000mcg, healing startup, some kind of relatively simple paradoxical folate insufficiency

4. 12,000- 24,000mcg, healing startup with moderate paradoxical folate deficiency

5. 28,000- 50,000mcg, healing startup, most severe paradoxical folate insufficiency

These bands are determined pragmatically by the results people report.

One of the things that has become very clear about l-methylfolate, is the seeming paradoxical effects. What one notices is the presence of deficiency or insuffiency symptoms. The results are symptoms that are inversely proportional to dose. The smaller the dose the more likely insufficiency symptoms are to be present as side effects, once at least one layer of healing is triggered. The larger the dose of L-methylfolate the less likely that folate insufficiency symptoms will appear. It appears that a person will have insufficiency symptoms all the way up to whatever their top of range is each time the dose goes up more slowly than healing increases.

4.Looking at Freddd’s Symptom List, Version 2 – 01/09/2014, I would like to know, if these symptoms improve by the taking of the particular nutrient or do they occur/worsen?
In my quick scan, that list is of things which responded to particular nutrients, which means improved.
 
Messages
24
Hi ahmo,

Thanks a lot for the information and your thoughts.

I am doing quite bad, bedridden most of the time. It is no longer only fatigue, I have the feeling as if I would have leakage current in my brain and I am starting to have panic symptoms. It is a hell of a ride and I have no idea what to do.

One thing is clear now, it was much too much of folate and I don't know if I would ever take it again.

I just took 50mg of Niacin in order to get away from this horrible symptoms.

Do you have any other advise?

Does anyone else have an advice how to stop the trip?

Wickie
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Niacin is good. Panic could also be too much folate. Repeat the niacin if necessary. When I was increasing folate doses, and had these sort of symptoms, instead of niacin, I took 1mg MB12, which also stopped the symptoms. Hoping this trip stops soon.
 
Messages
24
Hi ahmo,

I took one more dose of Niacin last night and I was happy that I could fall asleep then. Today I feel like a truck ran me over, flu-like-symptoms, headache, lightheadedness and ringing in the ears. I am very sensible to sounds and light and it is hard to be up.

I reduced the dose of folate to 4x50µg after the third day and even that has been too much. I wanted to turn my situation to a better, but it seems to be that I damaged my body additionally. That is very frustrating!

I am asking myself, if I am able to take methyl donors at all without having those bad trips. I am +/+ for COMT V158+H62 and MAO-A and maybe that makes a methylation therapy impossible for me.

I don't know, if I will have the courage for another try with methylfolate.

Thanks again for all your help.

Wickie
 

brenda

Senior Member
Messages
2,266
Location
UK
@Wickie

I had a terrible time too when l tried to take methyl b 12 and folate in a b complex like many others here. I had to stop. It has helped me to correct other deficiencies first then start on a very small amount of the methyl b complex. and l mean one eighth of a capsule or smaller and build up very slowly. For correcting other deficiencies l used food sources like wheat and barley grass powder and cutting out all packaged foods rather than using supplements.

Stopping folate allowed my body to return to how it was previous to taking it.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Here's a reference to COMT that might be of help. In my signature is a link to blog about FMN form of B2. It made a dramatic difference for me, could address the MAO issues. Glad the niacin worked. Hopefully your body returns to something more normal quickly.
 
Messages
24
@Wickie

I had a terrible time too when l tried to take methyl b 12 and folate in a b complex like many others here. I had to stop. It has helped me to correct other deficiencies first then start on a very small amount of the methyl b complex. and l mean one eighth of a capsule or smaller and build up very slowly. For correcting other deficiencies l used food sources like wheat and barley grass powder and cutting out all packaged foods rather than using supplements.

Stopping folate allowed my body to return to how it was previous to taking it.

Hi Brenda,

Thanks for sharing your experience!

I tried one fourth of a pure b complex some weeks ago and felt quite bad. I found it hard to know which of the components is creating that so I decided to take no mixed product. Perhaps it was also the folate, but in the past I also had problems with B6.

You said, that you started with one eighth. Where are you now and how much time has it taken to get there?

Do you have any improvements from taking the b complex?

I tried to correct deficiencies during the last months and I only eat fresh organic food and no convenience food. I also like to eat grasses and rice bran.
 
Messages
24
Here's a reference to COMT that might be of help. In my signature is a link to blog about FMN form of B2. It made a dramatic difference for me, could address the MAO issues. Glad the niacin worked. Hopefully your body returns to something more normal quickly.

Hi ahmo,

unfortunately my brain is still not working well. I also realized that I changed from hypothyroidism to symptoms of a hyperthyroidism the last days.
I will get through your Information as soon as I am able to do that.

I am housebound for years now and any worsening changes my situation to bedridden. Do you think that it is worthwhile to try methylation again with respect to my genetic disposition?
 

mariovitali

Senior Member
Messages
1,214
Yes, I did the test from 23andme.com.

Great. Could you look at the following SNPs and tell us which Homozygous/Heterozygous mutations you have?


DPAGT1

rs643788(Risk C)
rs28934876 (Risk C)


ER Stress response

rs13045 (EIF2AK3-PERK) : Risk C
rs2239815(XBP1) : Risk C
rs10918270(ATF6) : Risk A
rs391957 (HSPA5) : Risk C



GCH1, associated with lower levels of BH4

rs10483639( Risk C)
rs3783641(Risk A)
rs8007267(Risk T)
rs12147422 -(Risk C)
rs3783637 - (Risk T)
rs3783641 - (Risk A)
rs41298442 - ( Risk T)
rs4411417 - (Risk = C)
rs752688 - (Risk = T)
rs841 - (Risk A)
rs998259 - (Risk=T)
rs7147286 - (Risk=A)


NDUFS7

rs2332496( Risk A)
rs11666067 (Risk A)
rs1142530 (Risk T)
rs11666067(Risk A)
rs2074895(Risk A)



PAH Gene - Phenylalanine levels handling

rs10860936 (Risk C)
rs1722387 (Risk C)
rs1522305 (Risk C)
rs1522296 (Risk A)
rs772897 (Risk C)
rs1522307 (Risk G)
rs11111419 (Risk T)



Choline

rs3733890 (Risk A)
rs2461823 (Risk C) NAFLD Disease
rs7643645 (Risk G) NAFLD Disease
rs7946 (Risk T) (PEMT)
rs4244593 (Risk G) (associated with PEMT)
rs2236224 MTHFD1 (Risk A)
rs2236225 (Risk A) (MTHFD1)


CHDH (Susceptibility to Choline deficiency)
rs9001 (Risk G)
 

brenda

Senior Member
Messages
2,266
Location
UK
Hi Brenda,

Thanks for sharing your experience!

I tried one fourth of a pure b complex some weeks ago and felt quite bad. I found it hard to know which of the components is creating that so I decided to take no mixed product. Perhaps it was also the folate, but in the past I also had problems with B6.

You said, that you started with one eighth. Where are you now and how much time has it taken to get there?

Do you have any improvements from taking the b complex?

I tried to correct deficiencies during the last months and I only eat fresh organic food and no convenience food. I also like to eat grasses and rice bran.

I am taking about one quarter but not every day. I do not notice any improvement from that which has taken a few months of going slowly. I get increased inflammation. Choline has helped more.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@mariovitali about those snps you've listed...I have them all. where you list risk, does that mean if I have a hetero in those places, including the letter you've listed as risk, that this represents risk for me? Thanks
 

mariovitali

Senior Member
Messages
1,214
@mariovitali about those snps you've listed...I have them all. where you list risk, does that mean if I have a hetero in those places, including the letter you've listed as risk, that this represents risk for me? Thanks

If you have the letter which is designated as 'Risk' in any one position then means you have Heterozygous mutation to the specific Gene, if you have the risk Letter in both positions then you have a Homozygous mutation.

example :

rs1722387 (Risk C)

If i have C;C then i have homozygous SNP. If i have either :

C;T or T;C

then i have heterozygous SNP.


If i have

T;T

Then this means that there are no SNPs occurring to this gene.


Since you have SNPs on the genes listed, please consider looking at my original post and try the regimen.
 
Last edited:

Snowdrop

Rebel without a biscuit
Messages
2,933
Hi@Wickie
I am sorry to hear how bad it is for you at the moment. I have tried methylation and in my experience I found that it was better when I stopped the methylation and did other support supplements first.
As possible choices to start I would suggest a good multi-mineral formula along with a magnesium.
And a low dose multi-B formula.
And vitamin C. But you might want to further research (if you can) your specific symptoms and consider what might be useful.
That said, there are no guarantees of anything. But I would take a break from trying to figure out the methylation for a while and reassess.
I just went back and looked at your post. Most people are deficient in magnesium more than they need potassium. These two minerals give similar symptoms.

Perhaps you can talk about what symptoms are worst for you and that you are trying to treat.
 
Messages
24
I am taking about one quarter but not every day. I do not notice any improvement from that which has taken a few months of going slowly. I get increased inflammation. Choline has helped more.

Brenda, if you don't have any improvements and increased inflammation, why are you taking it?