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Need Help Starting Methylation Protocol, Please!!

Messages
73
Hi,

I have tried looking for help a few times with starting a methylation protocol, but need as much advice as I can get, I find it very confusing!


Was diagnosed with CFS/ME 3 months ago, suffering mostly from bad fatigue and body ache. I began taking 1,000mg of cyanocobalmin ( an error I now realise twice a day), along with d-ribose and coq10 for a month and a half and seemed to be doing quite well until I crashed two weeks ago.

I would now like to start a proper methylation protocol:

For the past 3 days I have taken

1,000 mg Jarrows b12 2x daily
1 B-right complex
800mg metafolin
1,000mg source natural dibencozide
500 mg l-carnitine tartrate
15mg d-ribose
1x multivit

From what I read though I need to analyse my SNP mutations but am unsure how to do that.

My mutations are as follows

homo:

  • VDR Taq
  • AHCY-01
  • AHCY-02
  • AHCY-19
hetero:

  • MTRR A66G
  • MTRR A664A
  • BHMT-02
  • BHMT-04
  • BHMT-08
  • CBS C699T
  • CBS A360A
Have noticed very little effects from the current supplements, apart from patches of my body went red and throbbed earlier today when in advertently took 5000mg of b12, though I read this may have been a niacin flush?

Anyway, any thoughts would be incredibly helpful. Thanks :)
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Solgar makes 400 mcg and 800 mcg. If you are able to read Freddd's or Rich Vanks protocol it will tell you brands and how to start. You also need potassium.

I can't help you much more than that since it baffles me too. I have an NP who is helping me with it.

This is from a post I got when I asked about the Deadlock Quartet per Freddd

Methylcobalamin: Enzymatic Therapy 1000mcg/1mg, or CountryLife 5000mcg/5mg, #6304 (as you noted above)

Adenosylcobalamin: Anabol Naturals Dibencozide

L-carnitine Fumarate (LCF): Doctor's Best

Methylfolate: Solgar Folate (as Metafolin)

So the deadlock quartet are the supplements he feels are essential for most people to begin to find relief from the symptoms of b12 deficiency, and to begin healing the central nervous system.
 
Messages
73
thank you for the advice so far. I think i'm fairly clear on the deadlock quartet, what I would really like to know is what my mutations mean for my protocol? Have begun to feel quite achey and unwell, not sure whether methylation start up or just a cfs crash
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
thank you for the advice so far. I think i'm fairly clear on the deadlock quartet, what I would really like to know is what my mutations mean for my protocol? Have begun to feel quite achey and unwell, not sure whether methylation start up or just a cfs crash

@burgeo10 ,

Don't take this as expert advice by any means, but looking at your SNPs, I wouldn't expect that you'd benefit from a methylation protocol. Your results are the envy of the rest of us.

What would I take if I were you? Maybe a little methylB12, and if your homocysteine tests high, add some TMG to help you recover the methyl groups, as the CBS will tend to drain them from the methyl cycle. Vitamin D may also help you feel better, but that's also something to test, to see how much you really need.

If you think that the supplements you're taking are contributing to your feeling achy, (as opposed to a passing virus or that pickup game of basketball), I'd stop them. If you don't get better, see a doctor before it goes too far.

Sorry I don't have more to say, but you seem to be doing the right things for a methylation protocol; I'm just really not confident that it would help you. And some people here have gotten worse when they did it.

Critterina
 
Messages
73
@Critterina thats very interesting. I did fear that I may have jumped the gun a bit on a methylation protocol, I have fallen into quite a severe crash but I really hope its not due to the supplements. Am stopping the b12 and folate for now... and may start again post crash.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
thank you for the advice so far. I think i'm fairly clear on the deadlock quartet, what I would really like to know is what my mutations mean for my protocol? Have begun to feel quite achey and unwell, not sure whether methylation start up or just a cfs crash

The following symptoms often occur on startup and this can help you find the potassium and folate does you need by titrating until the symptoms retreat. The gnenetic actually have almost no effect on the deadlock quartet. As any one part can mess up the rest specific genes make onoy a small difference. The story is told in the symptoms. Symptoms respond to the nutrients, genes don't.

Version 1.2 12/08/2013

Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both

Headache, Increased malaise, Fatigue



Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
 
Messages
2
Hi,

I'm new to this blog. Years ago I attempted to do Dr. Yasko's ideas for Methylation ... in the end gave up because her protocol is way too overwhelming for my body. I am highly reactive to so many things - more autism spectrum symptoms, but there is cross-over with some symptoms with ME/CFS. My brother started on Freddd's program three months ago and it has made a huge difference for him.

He gave me a few of the products to try. The Adenosyl my brain loves. And I can do the Country Life MethylB12.

I'm wondering about the methylfolate. In the past it has caused brain inflammation (Thorne's) - which basically renders my brain ineffective for about 18 hours. I tried the Solger Folate at 400mcg and it does cause the brain inflammation. I believe this isn't a 'reaction' in terms of detox or healing, as the past has shown that no matter what dose it will always cause this and never get better. Has anyone else reported something like this? Brain inflammation for me is also caused by anything excitatory to the brain (foods as well as supps) - glutamic acid, aspartic acid, fermented etc.

Can I do this program without the methylfolate? - although sounds like it is a very important piece of the Quartet.
 
Messages
13
Location
Dublin, Ireland
I started the protocol a year ago, and i let myself slide a bit in the last couple of of months resulting in my catching every infection going in september and also my getting very depressed again. I have started in the last two weeks and i am taking all the basics (vits A, D, E, Omega 3, nature made b complex, vit c and trace minerals and potassium (about 1300mg today so far) plus coconut water) started LCF in the mornings yesterday and today i am so itchy! my arms and legs feel like there is something under the skin. yesterday i had some serious rage too. Now whenever i start the protocol i get mood swings anyway, but this was scary rage.

So my question is, do i need more folate (solgar metafolin 400mcg twice a day is what i am taking)? or should I pare back the LCF (one cap of 250mg in the morning).

i'm just so fecking itchy!!!!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@debsicle You don't mention MB12. Frequently when I raised my folate levels I'd get itching. Taking a B12 immediately solved it. You should be increasing your MB12 along w/ folate. Check the Guide in my signature.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
@debsicle ,

I would assume the itch is an allergic reaction and STOP whatever you may have changed recently (LCF?). Before it becomes a life-threatening anaphylactic response. PLEASE. You may not be allergic to the main ingredient, but another part of the supplement.
 
Messages
13
Location
Dublin, Ireland
@ahmo I am taking MeB12 - half of an enzemetic therapy in the mornrning and the other half after dinner - i actually took a full solgar metafolin last night and the itching stopped, but i also took some MeB12 when i had my dinner. i have a feeling is something to do with the folate alright. by the way - I love your guide, i downloaded it last week and it has helped a lot. i think that just along the way in the protocol i just get confused :/

@Critterina thanks for the response - i don't think that its an allergy because i was taking the same LCF before from the same bottle and had no itching problems, but it was a smaller dose.
 
Messages
73
thanks @Freddd and everyone else for the comments. I did the HDRI methylation panel and got the follow resuls, i would really appreciate any comments on them:


S-adenosylmethionine 211 Low
S-adenosylhomocysteine 53.1 High

FOLIC ACID DERIVATIVES:

5-CH3-THF 7.6 L
10-formyl-thf 1.3 L
5-formyl-thf 1.00 L
THF 0.54 L
FOLIC ACID 9.7 N
Folinic ACID 8.0 L
Active Folate (RBC) 337 L

Adenosine 24.3 H


From HDRI i also had my vitamins tested and vit C and free carnitine were both low, vitamin B6 was very high.

VItamin C 0.2 L
Free carnitine 6.8 L
VIT B6 (P-5-P) 149 H range (12-30)


I'd hugely appreciate if anyone has any thoughts on the results, im considering starting a methylation protocol.

Many thanks :)