A gene testing challange

skwag

Senior Member
Messages
226
@Valentijn
I could not agree with you more. Some of my comments are tongue in cheek.

Admittedly, my depth of knowledge of these SNP's is very shallow. I'm just playing Freddd's game, taking a stab based on the interpretations I am aware of, and fully expecting to be wrong in most cases. No insults intended.
 

Freddd

Senior Member
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5,184
Location
Salt Lake City
Freddd reacts to too many vegetables that are high in folate, like me. It was the reason I had to quit raw vegan.

Hi Brenda,

Exactly! It isn't any specific single veggie. It was simply too much of a variety of veggies each with some folates. I don't know how common this is but I suspect that this group of people is the "natural" cohort from which the whole group of formerly rare diseases springs. Coming to an understanding of these folate problems couldn't have been done without such a variety of experiences as you and many others have contribute along with my lifelong problems and discussion with Rich. I came in here thinking the CyCbl was the primary problem and found that folate was the primary problem with B12 being affected by the folate situations.
 

helen1

Senior Member
Messages
1,038
Location
Canada
Well @Freddd, it's been 4 months since you launched your challenge. Are you going to get tested and save us from this intolerable suspense?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I will be getting the test soon. I am in the middle of a project that will that will supply the prize. Again, everybody here has been an inspiration for the design of the prize. I have taken into account everything everybody has disliked about all the various B12 supplements (teeth and gum damage, flavors, sweeteners, inconsistency, inability to titrate with precision at low levels, inaccessibility of satisfactory injections, etc.) and am designing what is hopefully the "makes almost everybody happy" form. There are problems to debug to get it just right.
 

ahmo

Senior Member
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4,805
Location
Northcoast NSW, Australia
@Freddd I've found I react to even a small amount of green vegetables, and have had to eliminate them all. The veg folate and excess Mfolate push my adrenals into stress. Based on my current online listening, I'm hoping a change in gut health might eventually shift this. I ate huge amounts of leafy greens before ME.
 

Freddd

Senior Member
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5,184
Location
Salt Lake City
@Freddd I've found I react to even a small amount of green vegetables, and have had to eliminate them all. The veg folate and excess Mfolate push my adrenals into stress. Based on my current online listening, I'm hoping a change in gut health might eventually shift this. I ate huge amounts of leafy greens before ME.

Hi Ahmo,

This looks like one of those things that might be understood by a "most limiting factor" hypothesis. In my N=1000 questionnaire development study I found that most limiting factors broke down in a quite specific pattern.

The range indicates variance within subgroups and too few people to get any closer.
  1. Active MeCbl - 75% response to 1mg sublingual with noticeable startup in under 2 hours.
  2. Other AdoCbl - 5-10% additional response to 3mg sublingual
  3. Metafolin 800mcg - 5-10% additional response
  4. L-carnitine fumarate 5-10% additional response
  5. Vitamin D 5,000 IU - 3-6% additional response

So what happens is that when MeCbl is taken, the demand for methylfolate goes up immediately and suddenly instead of MeCbl deficiency symptoms the fail is at methylfolate and the symptoms change demonstrate that. When AdoCbl is taken, the demand for mfolate goes up and so does carnitine. So the fail points become carnitine and maybe mfolate. When mfolate demand is not met, then the body's "triage" system allocates it to some tissues and not others.

The veg folate and excess Mfolate push my adrenals into stress.

I honestly have no idea if this is correct or even if it can be correct. The problems is, if it is incorrect or at least not predictive of what to do to correct it, it makes everything built upon it incorrect. Has anybody actually using this idea found how to correct it, manage it or whatever. How has it lead to success in healing? 0%? 10%? 50%? of people with the problems find that they can correct it quickly and that removes the roadblock to more healing.? Anybody at all?

I'm talking about thinking now, not any specific theory. Have you been able to validate it in any way?
 

ahmo

Senior Member
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4,805
Location
Northcoast NSW, Australia
So what happens is that when MeCbl is taken, the demand for methylfolate goes up immediately and suddenly instead of MeCbl deficiency symptoms the fail is at methylfolate and the symptoms change demonstrate that
I've just posted about this on the B12 oil thread. I'm copying that response here:
My first experience with Greg's B12 Transdermal Oil, as used by @@garyfritz: I'd taken my normal 10mg sublingual Country Life in the AM, along w/ 1/3 of my folate, as usual. When I received the oil, I used it in place of my 10mg CL dose. In the PM, I took the remaining 1/3 of my daily folate. Shortly after, I had the appearance of one of my mast cell/folate deficiency symptoms: blood blister on tongue. I asked body if this was folate deficiency, got a +. So I took .5mg folate, and the blister subsided immediately (!). A few hours later it was again inflating, so I took another .25mg folate, again it subsided.

So it seems the oil was very effective, and, combined with part of my usual sublingual dose, pushed me into a folate imbalance. Starting the day now w/ 1 pump, will see how this holds me through the day.

The veg folate and excess Mfolate push my adrenals into stress.
I can assure you this is correct for me. As I watched increasing signs of adrenal stress on my face in May, and then began having aching back, moving to low back inflammation, while my Mfolate dose had gotten up to 25mg and still having deficiency symptoms, I suddenly screeched to a halt. The only reference I found for adrenals + folate at that time was to it being positive for adrenals, in pregnancy I think. I stopped the green veggies, my folate needs plummeted, and my ongoing detox process was accelerated almost beyond my ability to manage it. At the end, my adrenals had made a dramatic shift, a burden of toxins was gone from my body. Since then, it becomes very apparent when my adrenals are stressed, and folate/folinic is very clearly a major culprit. Maybe this is in the category that Ben Lynch refers to in spinning the cycle too fast. I don't have time to look for the references, but that's where he warns against too much folate.

I'm so grateful that I've learned to read my body's signs and communicate with it. My healing would have been hopeless otherwise.
 
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SDSue

Southeast
Messages
1,066
Once you have a 23andMe account and data, you can find your genotypes for the SNPs which they test on those genes at https://www.23andme.com/you/explorer/ . Then you can usually find data regarding rarity and whether each SNP is a missense and/or pathogenic mutation at www.ncbi.nlm.nih.gov/projects/SNP/snp_ref.cgi?rs=
I always wondered where you got your missense information. Now I know. Thanks
Freddd reacts to too many vegetables that are high in folate, like me. It was the reason I had to quit raw vegan.
What does "react to" mean? Can you describe this? Thanks.
 
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Freddd

Senior Member
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5,184
Location
Salt Lake City
I always wondered where you got your missense information. Now I know. ThanksWhat does "react to" mean? Can you describe this? Thanks.

Hi SDSue,

I can explain what my response is. It starts with edema starting in hours, angular cheilitis in 2 days, and IBS in 5 days. When the paradoxical folate deficiency reverses, then I start loosing water quickly and start having low potassium symptoms for a few days on the way back to methylfolate sufficiency.

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
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Vegetable folate update:woot::woot: I came across a comment on the B2 thread:

http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/page-41#post-530774
Just wondering why you wouldn't take B2 if you didn't take folate, as B2 helps process folate. Is your diet low in folate from vegetables? Do you have a food source of b2? Because folate metabolism actually is one of the ways that b2 is used up.
I wondered if B2 might affect my ability to eat veg folate. Here's what happened, as I then reported on that thread:

It's worked!!! I had some regular B2, not R5P, 100mg caps. The first day I took 1 cap, juiced/ate 4 small lettuce leaves. No symptoms! The second day I used 1/2 cap, 50mg, same amount of lettuce: No symptoms!! Wow, I'm going to be able to eat green veggies!!!
 

ahmo

Senior Member
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4,805
Location
Northcoast NSW, Australia
And here's an update on my B2 experiment: It was nice while it lasted.:(By Day 3 of this experiment, taking 50mg B2, I couldn't understand why I was having such an ammonia problem. Day 4 @Gondwanaland reminded me of my B2 intake.
oh_jeez-1018.gif
Of course, B vits are high sulfur. I've felt like I'm drowning in ammonia these past 2 days, doing everything in my toolkit to get rid of it. Needless to say, no B2 today. I'll review B2, green veggies at some later date. Just now, I can't wait for my system to calm down!:aghhh:
 

brenda

Senior Member
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2,277
Location
UK
@SDSue

I get diahorea within half an hour. I tried taking b12 with the veg and it stopped it happening However it is better now though l cannot take any folate or b12 at all ATM (previously very small doses only, like a finger dip of a complex) as it inflames IC.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
What are the symptoms? What does it feel like?
Speedy, but not shaky like w/ caffeine. Like I'm jumping out of my skin...but not the histamine, restless experience I get with too much folate. I've been trying to nail down the description for hours. Ammonia for me tends to be something that's not exactly headachey, but causes my eyes to get squinty, feel congested head. This is also triggering histamine reaction, itching, though not so seriously. I haven't felt this overall weird for 6 months.
 

Freddd

Senior Member
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5,184
Location
Salt Lake City
This is also triggering histamine reaction, itching, though not so seriously. I haven't felt this overall weird for 6 months

Can you describe the itching in details and ALL the other symptoms in detail to please? "Histamine response" is a hypothesis about a group of symptoms. What are the specific symptoms please. Weird is good but in what ways weird? Any itchy bumps on the scalp?
 
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