• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Just found out I'm histamine intolerant, does that mean undermethylated too?

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi, I read a study some months ago (don't recall name) on older women and folic acid. Most tend to convert folic acid to active forms when young, however in the older group nearly 80% can't convert it, and unconverted folic acid rises in the blood. It is associated with dementia, cancer and decreased natural killer cell function. The latter is a dommon feature of ME. I just want to support Freddd in saying that the synthetic forms of vitamins are not a good idea. They have a use in emergency situations where you want to take a portable form into hostile conditions - like a disaster zone in central Africa. Adding folic acid to bread and grain products, as a public health measure, is looking more and more like a serious world-wide stuff-up.

I would like to add alpha tocopherol to the list of bad vitamins. Its natural, yes, and we can use it, yes, kind of. It has a low utilization rate. The real damage is that it competes with other more active forms, like gamma tocopherol. This includes competition for absorption. So we prevent extreme deficiency with supplementation, but is likely to induce partial deficiency as a result. This is not optimal. Alpha tocopherol is commonly added to fat based supplements and foods to prevent oxidization, which means its frequently ingested.

Bye, Alex
 

Aidan Walsh

Senior Member
Messages
373
I've had a terrible past few weeks dealing with nausea, stomach pains, horrible headaches, air hunger, etc, etc. I found out during this time that sulfur foods were causing me problems, but even after eliminating them the headaches, air hunger and nausea continued. I now believe the air hunger to be from adrenal fatigue, but the headaches and nausea are definitely related to histamine foods.

I've been trying to research this and most things I'm reading seem to indicate if you are high histamine you are also an undermethylator. Is that true?

I'm also reading that those who are high histamine should not take B vitamins or folic acid. Any thoughts on this?

Maybe I'm jumping the gun here too. I did have a blood test previously and my histamine level was fine, so perhaps being high histamine is different from being intolerant?!?!

Any input would be appreciated. Seems like everything is falling apart right now. The last few weeks have just been horrible and I'm trying to piece the puzzles together and make sense of it all.

I have a doctor appt Friday and am planning to ask for some testing to be done. I'll start with a repeat of the histamine level. Any other suggestions for what to check? Thanks so much!
How did you get your histamine intolerance diagnosis was it from ststemic mastocytosis or the DAO enzyme test also you would need to rule out as well fructose intolerance to be sure they do not cause more symptoms let me know how you are feeling on elimination diets thanks :)/s be well
 

Aidan Walsh

Senior Member
Messages
373
Aside from histamine intolerance or SIBO I am hearing a lot now patients have the severe form of what is refered to as Hereditary Fructose Malabsorption I have now refrained from all fructose including sugar completely one will notice thereaction is a white coating on your tongue fructose is

also in toothpaste as well...I know one thing is certain sugar/fructose are toxins see CBS 60 Minutes on 'sugar is a toxin' they mention also fructose plus the Japanese made a synthetic form in a lab cheaper than adding sugar even any soft drinks are loaded with sugar/fructose it is also in

numerous names...Something to seriously consider plus they feed infections especially parasites/bacterias Lyme...Starve the little buggers I threw out my vitamin C plus K2 yesterday these are now not my diet I'll be damned if I eat fruits even bananas/tomatos/sauces including

certain vegs loaded with fructose...Majority of dish soaps deordorants laden with fructose...Your skin is 70% of your immune system...
 

A zombie

Senior Member
Messages
197
if i'm deficient in b12 , is 5000mcg enough?I take hydroxy drops from holistic health.
I have burning tongue too.
Going to work on methylation like ppl posted in this thread...MSM, adding in 67 mpg of dolninc acid, i'm not able to tolerate the 400mcg caps but just purchased folininc in liquid form and each drop is 67 mcgs, also from holistic health. See if these things help!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
if i'm deficient in b12 , is 5000mcg enough?I take hydroxy drops from holistic health.
I have burning tongue too.
Going to work on methylation like ppl posted in this thread...MSM, adding in 67 mpg of dolninc acid, i'm not able to tolerate the 400mcg caps but just purchased folininc in liquid form and each drop is 67 mcgs, also from holistic health. See if these things help!

@A zombie

IN my experience MeCbl starts getting rid of "beef-red" burning tongue in a day or two. It was 100% gone in 10 days. If HyCbl doesn't do that then it isn't getting converted to MeCbl sufficiently in your body. A 1000mcg MeCbl (of an effective brand) used sublingually for 45-120 minutes should be ample for healing the tongue. For some people l-methylfolate also has to be added. Folinic acid can block the human active l-methylfolate and MeCbl and prevent any healing and even cause worse folate deficiency symptoms.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
what's MeCbl?so folininc acid not good?

@A zombie,

I see you have had some gene testing. I don't think that is "here" yet for accurate translation as what to do. What I do know is that some vitamers (vitamin forms) are far more active than others, and for them to work for a person a lot of assumptions all have to be true. For me almost none of the assumptions were correct. I had to take MeCbl and AdoCbl, the two active in humans without conversion B12 forms. I also have to take l-methylfolate for the same reason, active without assumptions and conversion. For a person starting out who has a high visibility no doubt about it symptom (a classic symptom), one can know if the b12 and folate they are using are effective in a day or two. Using the active b12s and folate in the beginning cuts down on the "that didn't work, so what's next?" which requires discontinuing things and starting others to get it working. If you have an effective brand of MeCbl, AdoCbl and L-methylfolate you will know it quickly. On the third day you appear very likely to have refeeding syndrome as you display obvious tissue breakdown. This causes symptoms that can be dangerous, especially when called "detox" and not handled.

Version 2.12 02/14/2016 A work in process, incomplete, use at your own risk.

INDUCED DEFICIENCY SYMPTOMS FROM REFEEDING SYNDROME. This can follow 5 days of food deprivation, anorexia, or sort of a pinpoint starvation via vitamin or mineral or amino acid deficiencies. Whatever the “most needed” item is will often cause a strong response

Group 1 – Hypokalemia onset. Often called “detox”. 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, partial methylation block to methyltrap on 1 or more internal triage levels. Frequently called “NAC DETOX” or “GLUTATHIONE DETOX”. Can be caused by folic acid, folinic acid and for some people, like me and quite a few others, excess vegetable folates. Further excess B1, B2, B3 and/or inositol can increase methylfolate deficiency symptoms.

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, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Headache, Increased malaise, Fatigue


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.
 

A zombie

Senior Member
Messages
197
i didnt understand anything except that i'm taking hydroxycobalmin as i have comt ++.Other thats that i understood nothing :(
i will say folininc acid at 400mcg makes me feel enraged, the folininc i'm taking now at 67 mcg didnt do that to me.