Starting the B12 protocol, does this plan sound ok? Plus some questions.

[Myrtle]

Hi all,

After research and help, below is a B12 protocol timetable I have figured out so far.
I have a few questions I hoped some of you could help me out with.
-Does the overall protocol sound right? (ie: the supplements, the doses where listed, the timings)
-Where the doses are not listed, does anyone know what they should be?
-When should I take the supplements each day? (ie: what time of the day, with food or on an empty stomach, should I split any of the doses)

I would really appreciate the help.

Starting B12 protocol

Start with:
Vitamin a - 10,000 from fish oil
Vitamin c - 4000 mg
Vitamin d - 10,000 iu caps and 400,800 or 1000 from fish oil
Vitamin e - now foods gamma E complex
Vitamin b-complex - pure encapsulations b complex plus
calcium
magnesium
omega3 oils
Zinc - 50mg
potassium


ALA can be started too at this time.

After a few days add:
Country Life adb12 - 3mg under lip or tongue for at least 45 mins

Then after a few days start adding:
Enzymatic therapy methylcobalamin - 1mg under lip or to urge for at least 45 mins

After adding in the adb12, the mb12 and things have stabilized, add:
Solgar Folate as metafolin - 800 mcg

After that has stabilized add:
Doctor's best l-carnitine fumarate get 855 mg

After that has stabilized add:
Now or Jarrow TMG

After all this has stabilized add:
Nature Made SAM-e - 200-400 mg

After that has stabilized add:
D-ribose.

I wonder if you @Fredd would be able to comment/help on this thread as well as others please.

Thank you all

Myrtle

 

[Myrtle]

I wondered if @Sea and @Critterina would have any comments on this as well please as your comments on my last post were very helpful.

Thank you again

Myrtle

 

[Sea]

@Myrtle I am really not knowledgeable enough to advise you with your list. It took me at least a month to work out what I was going to do to start methylation supplementation. I understand it is overwhelming trying to sort out so much information without a fully functioning brain and it is not a one size fits all list.

I think Freddd is the member you were trying to ask for help. We also have a Fredd but he is not the one dealing with methylation protocol questions

 

[Myrtle]

Thanks @Sea.
You are right about it taking a long time, it's taken me 4 months to even be able to look at the information due to my brain going on strike.

I wonder if @Freddd would be able to comment/help on this thread as well as others please.

 

[Critterina]

I wondered if @Sea and @Critterina would have any comments on this as well please as your comments on my last post were very helpful.

Thank you again

Myrtle

Myrtle,

Freddd has a protocol that he suggests, for everyone as far as I can tell (and it has helped him and many people a lot, but some have had pretty serious issues with it). I don't know what to suggest without knowing more about you. I know some theory, and I have my own experiences (that don't include ME/CFS). What you describe is a lot like what my nurse practitioner put me on, only it was beta carotene for the Vitamin A, and she started me on methylfolate right away. Also, that's a whole lot of Vitamin D if you're not deficient.

Why are you interested in a B1 protocol? Why not a methylfolate protocol? I need more info.

I guess my first concern is that you could cause a methylfolate deficiency before you add in the Solgar. It really depends on your SNPs (I think.)

TMG is not for everybody. Do you have BHMT 08 mutations?

I will have more time next week perhaps. Consider sharing more about your background, tests, symptoms, SNPs if you know them.

 

[Myrtle]

Hello again,

Thank you for your reply @Critterina, here is some more information about me.

My SNP's are:
VDR Taq +/+
MTTR A66G +/+
BHMT 02 +/+
BHMT 04 +/+
BHMT 08 +/+

MAO A R297R +/-
MTHFR C677T +/-
MTHFR A1298C +/-
MTRR A664A +/-
CBS C699T +/-
CBS A360A +/-

I was diagnosed with CFS at 13 years old.
I had recovered enough to work part time by 23 years old and built up to working 9-5 by the age of 27. Having said this, even at my fittest I was only functioning at maybe around 50-60% of a healthy person, I had to go to bed by 9.30pm every night and slept for most of the weekends.
I had a relapse at 29 years old and have not yet recovered 7 years later (I have had 2 children during that time, pregnancy makes me pretty much bed bound)

I chose the B12 protocol as it seemed the most comprehensive to me, of course I am a total layman when it comes to this.

I'm not even sure how many of these specific supplements I can actually get in the UK.

My main symptom is severe fatigue.
I don't have any pain which seems to be unusual for someone with a CFS diagnosis.
I also have quite a lot of problems with air hunger, a more or less perpetual blocked nose and significant brain fog.
I have hypothyroidism.

The thing that makes the biggest difference to me is sunlight, I drastically improve in strong sunlight (ie: near the equator). I go down hill rapidly with out strong sunlight to the point of being in bed for 23 hours of the day.
I am on 10,000iu of vitamin d because that dose seems to help make me less fatigued. I haven't tried a higher dose as I was nervous of overdosing, so I don't know whether I would improve further with more vitamin d or not.

I don't have any blood results other than for my hypothyroidism so I can't tell you anything in that area.

Other symptoms I have from Freddd's symptoms list are:
Paleness
Nausea (on over exertion)
Standing get with eyes closed loss of balance
Unable to full empty bladder (not every time)
Tinnitus
Intolerance to loud sounds (on over exertion)
Intolerance to multiple sounds (on over exertion)
Non restorative sleep
Sound hallucinations (occasional)
Blurring of vision (occasional)
Flatulence
Altered bowel habits
Abdominal pain
Intermittent constipation
Intermittent diarrhoea
IBS
Hypersensitivity to odpurs
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to body malfunctions/ symptoms
Hypersensitivity to visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to internal metabolic changes
Hypersensitivity to temperature changes
Headaches
Mucous thick, jellied and sticky
Asthma
Chronic infections
Eczema (not had for about 15 years)
Poor hair condition
Thin nails (peeling back to about a quarter down the nail bed)
Sore mouth for no infection or reason
Canker sores
Angular cheilitis
Poor resistance to infectios
Easy bruising
Reduced libido
Sexual related symptoms (I can pm if you need more detail)
Menstrual symptoms
Limbs feel stiff and heavy
Drowsy
Clumsiness
Difficulty finding a word
Unsteadiness of gait
General feeling of weakness
Exercise debilitating
Heart palpitations
Irritable
Depression
SAD
mental slowing
Personality changes
Chronic malaise
Poor concentration
Moodiness
Tiredness
Mood swings
Memory loss
Listlessness
Impaired connection to others (on over exertion)
Vertigo
Dizziness

Thank you, it is great to get some help

Myrtle

 

[Critterina]

Myrtle,

Thanks for the details. I can see that you are compound heterozygous for MTHFR (meaning that you are +/- for both A1298C and C677T). That means that methylfolate, not B12, may be your greater need. In fact, since you are MTRR A66G +/+, adding B12 could use up your methylfolate in a zip and you could really feel bad.

I'm assuming you haven't been on methylfolate, have you? Many of the symptoms you list are associated (by Freddd at least) with insufficient methylfolate. I think of the angular chelitis in particular. A lot of the symptoms you list can have many causes, folate deficiency being one of them, but not the only one by far.

So, my guess is that you want to start your B12, but not until you've built up a little methylfolate (a week? two?). And TMG can come later.

And the Vitamin D is good...but I'm starting to learn that you need to take Vitamin K2 with Vitamin D or your calcium ends up going the wrong places. Has your calcium been tested? Was it high?

So, the good news is that it seems like a lot of your symptoms could be related to not enough methylfolate and not enough biopterin (caused by the lack of methylfolate and your MTHFR A1298C), and that it's at least possible that with continued appropriate methylation support, that you'll make gains on many fronts.

I also really would want you to take a print out of what you just posted to a doctor. Something else might be wrong and it might be very important to figure it out. Maybe someone on this forum in the UK can suggest someone, or you can look in the Doctors forum. I'll send you a message in a conversation, ok? Hang in there.

 

[Myrtle]

@Critterina

That's really interesting about not needing B12 as I am actually already on "5g Swanson methyl B12" and have been for a couple of years at the suggestion of a doctor. I really didn't notice it made any difference to me at all but I was thinking that maybe that was because I am not taking the other suppliments on the protocol, now from what you have said it seems that it may be because that is not my problem and methylfolate is?
Should I stop taking it?

The suppliments I currently take are:
Swanson 5000 mcg methyl B12,
Omega 3 1000mg , Evening Primrose Oil 1000mg, Vitamin D 10,000 iu, Zinc 15mg , Multivitamin (normal one that contains folic acid, Vitamin C 1.5g, CoQ10 200mg, niaciamide 500mg, Now magnesium citrate powder 1/4tsp, L acetyl carnitine (stopped for the moment as I think it maybe interfering with my levothyroxine absorption) , maca powder 1tsp, apple cider vinegar 40ml.

I have never taken methylfolate.

My calcium was tested about 2 years ago and I seem to remember it was a little high. What dose of vitamin k is suggested?

Also what is biopterin? What dose would I need?

I added the TMG is as someone suggested it because of my BHMT mutations.

If you were to use my format of the start up protocol (ie: precise instructions like: what dose? When to add in? Do I start at the full dose? If not, what dose do I start on? How quickly do I increase the dose and by how much each time?) what would your suggestions be?
I know this is a lot to ask and I hope I have made it easier by doing the research I have done so far but I would really appreciate your advice. I have really tried to understand what I've researched but it seems I am missing a lot of things out or getting them wrong. My brain is near useless at the moment and the only way I can see to try and improve it is do this protocol but I need my brain to work out what to do so it is a catch 22 situation.

I have already been to the doctors many times and told them all of this but the just do a standard full blood count and maybe 1 or 2 other standard bloods (find it's not what they would consider far enough off of normal), tell me it's CFS and offer cognitive behavioural therapy which doesn't help what so ever. CFS seems to be a catch all diagnosis that means the doctors don't have to try. I have given up on doctors and am trying to do this on my own, which seems to be more successful I think. I will still try and ask for blood tests when I need them but apart from that getting them to listen about methylation would be near impossible.

Thank you so much I can't express how much this help means to me.

Myrtle

 

[Critterina]

@Critterina

That's really interesting about not needing B12 as I am actually already on "5g Swanson methyl B12" and have been for a couple of years at the suggestion of a doctor. I really didn't notice it made any difference to me at all but I was thinking that maybe that was because I am not taking the other suppliments on the protocol, now from what you have said it seems that it may be because that is not my problem and methylfolate is?
Should I stop taking it?

No, don't stop B12. If you're on it already, perfect!

I would add a little methylfolate. Your compound hetero status means you probably only make about 30% of the methylfolate that you would if you didn't have those mutations. I think maybe it depends on whether your mutations are on one strand of DNA or if each strand has one mutation - but overall the answer is the same: methylfolate.

Then increase it slowly. If you start feeling poorly, it may be that you're flushing the potassium out of your system, according to a lot of people here - although I have no understanding or experience with it. If I were you, I would make one change at a time, and that would be it. (Of course, being me, I'd make a whole lot of changes and wonder what caused what.)

You don't really add biopterin (well, you can, but there are issues according to some web sites, and it's expensive.) And technically it's tetrahydrobiopterin, BH4. It makes seratonin and dopamine. If you have enough methylfolate, you will make some more BH4. Of your symptoms, the following are ones that seem from I've read (I don't do research, and I don't believe everything I read) might be related to it:

Intolerance to loud sounds (on over exertion)
Intolerance to multiple sounds (on over exertion)
Non restorative sleep
Flatulence
Altered bowel habits
Abdominal pain
Intermittent constipation
Intermittent diarrhoea
IBS
Hypersensitivity to everything
Headaches
Drowsy
Clumsiness
Difficulty finding a word
Unsteadiness of gait
Irritable
Depression
mental slowing
Personality changes
Chronic malaise
Poor concentration
Moodiness
Tiredness
Mood swings
Memory loss
Listlessness

I also see anxiety, autism, OCD, ADHD, schizophrenia, bipolar, and migraines on many lists, so count your blessings. But remember, too, that these can have many causes. I just think that with your SNPs and your symptoms, it's worth a try.

 

[Myrtle]

I have ordered Solgar metafolin 400mgs and am planning to start on those, I don't know if that is a good starting dose or if I need to cut it up?

Another issue I have is that I get a lot of vitamins from my multivitamin (see below) but I think the advice is to cut that supplement out as it contains folic acid. To replace all of the other vitamins and minerals it contains would take a huge amount of separate supplements which doesn't sound practical.

Multivitamin contents:

Vitamin A 800mcg
Vitamin D 5mcg
Vitamin E 10mg
Vitamin C 60mg
Thiamin (B1) 1.4mg
Riboflavin (B2) 1.6mg
Niacin 18mg NE
Vitamin B6 2mg
Folic Acid 200mcg
Vitamin B12 1.0mcg
Biotin 150mcg
Pantothenic Acid 6mg
Calcium 200mg
Iron 14mg
Magnesium 100mg
Zinc 15mg
Iodine 150mcg
Potassium 40mg
Selenium 25mcg
Copper 1000mcg
Phosphorous 145mg
Vitamin K 20mcg
Manganese 1mg
Chromium 25mcg
Chloride 36mg

I have seen a couple of other brands of multivitamins on here that don't contain folic acid but they all seem to have methylcobalamine and methylfolate which seems like it will interfere with me trying to adjust the doses slowly so they are tailored to me. Do you @Critterina or anyone else have any suggestions?

Thanks for you help, you're a life saver

Myrtle

 

[Critterina]

Personal opinion only - that your multi, if it hasn't caused you problems already, is probably OK. If you said you were SHMT +/+ and MTHFR C677T ++, I might worry more about you being able to use folic acid. But it never bothered me, and I do have the SHMT. I have taken folic acid before to stop mystery pains at various times over the years. (I call them ghost needles, because if feels like someone stabs you with a sewing needle, gone as fast as it appears). The folic acid has helped me; apparently I can metabolize it.