Undermethylation rollercoaster on SAMe and active Bs

Messages
4
Likes
2
Good Samaritans, can you please help me with the second opinion and advise changes to protocol?
Otherwise with current treatment I had a mini stroke last weekend at the age of thirty...

Can it be one of B12 forms playing up or do I miss calcium, potassium or other electrolytes or maybe it is about CBS / sulfur / histamine detox issues?
During the last year, I have been very introverted, depressive, generic and socially anxious, jittery, paranoid and OCD despite of having normal blood tests and OK stress levels in general. And it was never normal me outside of introversion and tiny bit of OCD :)

Currently on the protocol for three weeks from Walsh-trained GP + ND
• SAMe + B, activated B complex (three types of B12), Zinc, generic lacto probiotics
• By ear also adding magnesium pills, fish oil and sachet of Hydralyte sports mix with potassium, sodium, manganese, calcium, etc
• Low amine and histamine diet, no diary, barely any gluten
• Improved mood, energy levels, stress tolerance, anxiety and addictions disappeared
• Brain fog, ruminations, lack of motivation are gone!
• Less bloating, able to digest proteins again
• No more joint and lower back pains
Major concerns though seem to be related to Activated B complex, improved when added electrolytes and paused it
• Severe palpitations, can literally feel heartbeat in chest, finger tips, chest, neck, eyes, crotch and calf veins
• Awful weakness to the point of barely able to hold bladder in the morning and hemorrhoids prolapse, not to mention gym performance
• Severe pain in upper shoulders and neck (no stress)
• Able to see dark veins through the skin
• Muscle twitches in random areas
• Rare twitches in blood vessels in temples
Had wasted thousands of dollars on acupuncturists, herbalists, psychologists and NDs until getting to MTFHR/Walsh world and running gene analyses.

Genes +/+
• BHMT-02
o According to Dr. Yasko, a homozygous mutation of BHMT 01, BHMT 02, BHMT 04, can produce results similar to one with a CBS upregulation even if you don't have a CBS upregulation
o Based on butterflies in the stomach, tight shoulders and intolerance to methyl B12 it seems CBS path is active
o What shall I be doing with this one? Take sunflower lecithin mindful that it is a methyl donor?
• CYP1A2 164A>C
• CYP1B1 L432V
• NAT2 I114T
• NAT2 K268R

+/-
• MTHFR A1298C – the beast itself
• MTRR A66G, MTRR K350A – struggles with making methyl B12 from methyl donors. Based on Dr. Yasko roadmap to health I shall tolerate all B12 - hydroxy, adeno and methyl (less). However it also says if jittery after coffee /coke then could be issues with Methyl B12
• VDR Bsm, VDR Taq – potential issues with D3 and dopamine? Supplement D3 if low on D level
• SHMT1 C1420T – “leaky gut gene” – there are recommendations to take folinic acid or methylfolate or lactoferrin. Probably not at the moment :) shifts the methylation cycle away from both the long and short routes through the methylation cycle into a side reaction
• CYP2C19*17
• SOD2 A16V

Tests
• ND guess is undermethylation, Zinc and B group deficiencies (pyroluria), however no tests were done
• Based on Imupro – high histamines / low DAO in blood, IgE reactions to most of the foods I ate, especially eggs, milk, gluten, high amines and histamines
• Blood tests for thyroid, sodium, potassium, chloride, iron, liver enzymes were in the normal ranges for the last two years (Australian ranges)
• Nothing extraordinary with viruses and urine tests
• Low border testosterone
• No celiac disease
• No STDs
• Confirmed Blastocystis hominis infection, no confirmation it is active though

Weird things
• Urine smells like a meat after eating two consequent portions of home boiled chicken or beef. Does not seem to be the issue with restaurant food. (I barely ever add salt to my meals)
• Were never friends with coffee. Even one black cup/shot after 11AM used to prevent me from winding down in the evening. Now it makes me jittery immediately even if in the morning and keeps up until midnight. First urine after also smells like strong coffee. Green tea does not kick in so strongly but still keeps me up later in the day
• Low tolerance for alcohol, get pissed extremely fast but barely have any hangover
• Low tolerance for occasional marijuana, depression the next day though
• As a teen – low immunity, always congested sinuses, motion sickness, high libido, stich in the side when running, grey and falling hair since age of nineteen, little or no dream recall
• Personality – self-motivated, addictive, competitive, oppositional defiant, barely any fear or concerns, amazing memory, good academic track record, perfectionist
• Barely ever have headaches, sneezing when sun is out

Guesses on the reasons for all the rollercoasters
• Pyrrole symptoms were there for ages, but rest started with multivitamins and B complexes with folinic acid or even folate itself. Had severe brain fog, mood swings, mania depression, crying spells, irritability, intense thoughts, insensitivity to noise/lights
• “Healthy lifestyle” propaganda
o Plenty of green veggies and salads
o High histamine red wine, ciders, kombuchas, fermented soy, coconut, sauerkraut, vinegars, bone broth, coconut oil are sending me to hell
• Binging on tremendous amount of junk twice-thrice per week and then purging. Everything with sugar, nuts, milk, chocolate. Not related to body image, more comfort food and then vomiting with all junk because of feeling fool and sick
• Drinking mostly distilled water
• Not using salt when cooking myself
• Western diet, takeaways, protein and protein bars
• Social smoking

Current supps are two SAMe tablets first thing in the morning half an hour before breakfast, each is
• Zinc amino acid chelate • 25.0mg
equiv. Zinc • 5.0mg
• B2 - Riboflavin • 10.0mg
• (S)-S-Adenosyl-Methionine disulfate tosylate • 400.0mg
equiv. (S)-S-Adenosylmethionine • 200.0mg
• B6 - Pyridoxal 5-phosphate • 5.0mg
equiv. Pyridoxine • 3.5mg
• B6 - Pyridoxine hydrochloride • 25.0mg
equiv. Pyridoxine • 20.6mg
Zinc - 20mg acid chelate in the morning and 30mg citrate dihydrate after last meal
Activated B complex – one capsule after breakfast and lunch, each capsule contains
Thiamine hydrochloride 50mg equiv. Thiamine 44,6mg
Riboflavin sodium phosphate 20mg equiv. Riboflavin 14,6mg
Nicotinamide 100mg
NAD 5mg
Calcium pantothenate 100mg equiv. Pantothenic acid 91,6mg
Pyridoxal 5-phosphate 20mg equiv. Pyridoxine 13.7mg
Levomefolate calcium 434ug
equiv. Levomefolic acid 400ug
Mecobalamin (Co-methylcobalamin) 400ug
Hydroxocobalamin 100ug
Adenosylcobalamin 100ug
Choline bitartrate 50mg
Inositol 50mg
Biotin 500ug
 

sb4

Senior Member
Messages
847
Likes
1,093
Location
United Kingdom
I'm very much an amature at this stuff, but I do know Chris Masterjohn urges caution with SAMe supplementation. The reason being that your body has ways of regulating how much SAMe it produces, to stop potential overmethylation. When you take SAMe you are skipping over these regulations.

High levels of SAMe inhibit MTHFR, which stops 5,10 Methylenetetrahydrofolate being converted to 5MTHF. This causes low 5MTHF which is the signal for the Glycine buffer system to activate. The glycine buffer system gets rid of extra methyl groups from SAMe but this wastes glycine. Since modern diets contain too much methionine (SAMe) compared to glycine anyway, then you could be further exaserbating low glycine and causing overmethylation.

This might not be a problem at all for you though, IDK. I think it would be worth checking out a few of Masterjohns podcasts on methylation. You might get something out of it.
 

jason30

Senior Member
Messages
389
Likes
177
Location
Europe
In addition of the post above, maybe the form of B6 is a problem. I have seen a study suggesting that the pyridoxine form (the most common B6 supplement) can be problematic in some people. Pyridoxal 5 phosphate might be worth considering.
Especially with a impaired liver function;
Plasma P5P levels were found to be significantly lower than normal in 22 out of 31 patients with impaired liver function, which reflects the liver’s importance in B6 conversion. In patients receiving pyridoxine HCl, only 33 percent responded with an increase in plasma P5P, while all of the patients receiving P5P responded with an increase.
http://www.medicinacomplementar.com.br/biblioteca/pdfs/Nutrientes/nu-0115.pdf
Also, to utilize B6 you will need magnesium and lysine!
 
Messages
4
Likes
2
In addition of the post above, maybe the form of B6 is a problem. I have seen a study suggesting that the pyridoxine form (the most common B6 supplement) can be problematic in some people. Pyridoxal 5 phosphate might be worth considering.
Especially with a impaired liver function;


Also, to utilize B6 you will need magnesium and lysine!
Great thanks!Magnesium and lysine can be the key. On B6 - is not it all P5P already in supps?
 

Mary

Moderator
Messages
5,534
Likes
11,269
Location
Southern California
Major concerns though seem to be related to Activated B complex, improved when added electrolytes and paused it
• Severe palpitations, can literally feel heartbeat in chest, finger tips, chest, neck, eyes, crotch and calf veins
• Awful weakness to the point of barely able to hold bladder in the morning and hemorrhoids prolapse, not to mention gym performance
These could be symptoms of low potassium, and if you've looked at Freddd's posts about methylation on this board, or do a search for potassium, you'll find having potassium levels tank after starting B12 and/or folate is very common. Many of us (including me) have to take extra potassium daily. I take about 1500 mg. a day in divided doses (including the middle of the night!) Here's a thread about why extra potassium may be needed for methylation.

I'd suggest getting some low-sodium V8 and drinking 2 or 3 (or even more) glasses and see if it helps how you feel. I recommend the low-sodium kind because it's higher in potassium than regular V8. People often will feel better within a couple of hours, if low potassium is the problem. And then you can decide whether to take a potassium supplement or try to get all you need from foods.

Also people with ME/CFS can have low intracellular potassium despite normal blood work. And the thread linked above explains why.

I've seen many people post that their blood work was fine so they didn't think they had an issue with low potassium, when in fact they did.