Help Please! Crazy Histamine Intolerance Since Starting Methylation Protocol

[chilove]

Hi all,

Can anyone please help me figure out what I'm doing wrong? I found out I have the double MTHFR mutation after suffering an endocrine and adrenal system crash a year and a half ago. I am on supplemental hormones including cortisol and started taking mb12 and methyl folate. Since then I have developed an intolerance to histamine containing foods and suffer severe flushing and flashes, itching, irritability and other symptoms.

I suspect CBS issues due to severe protein metabolism issues and problems with sulfur foods. I can't even take amino acid supplements.

I am taking LDN (Low Dose Naltrexone- an immunemodulater) and it helped reduce my environmental allergies but I'm wondering if it had anything to do with the histamine intolerance developing.

I have a history of fibromyalgia, severe food allergies and protein intolerance, OCD and anxiety. All of those resolved on a very low protein raw vegan diet but after a decade of feeling great on it I suffered the crash a year and a half ago.

If this is enough info can anyone please shed any light on the histamine/methylation connection or point me in the right direction?

Due to funds I'm not seeing a specailist in this area but do have a supportive GP that my insurance pays for that will order tests for me if I ask.

Thanks so much!

Audrey

 

[therron]

I can't really tell you why we get crazy histamines, but I can tell you that Molybdenum drops help me a lot. They help with sulfite/sulfate conversion......I'm not sure how that relates to histamine. I just know that it decreases my histamine intolerance periods.

 

[caledonia]

Here's a thread on histamine: http://forums.phoenixrising.me/inde...icked-off-a-histamine-reaction-richvank.9023/

You can also look up mast cell activation on this forum.

 

[Crux]

There are people with these polymorphisms who will find that they don't need the high doses of folate.
http://mthfr.net/methylfolate-side-effects/2012/03/01/

 

[Star-Anise]

chilove: Hi there, I'm just staring to figure some of this out myself. What I do know is that after I did the CBS protocol that Yasko prescribes for a few weeks that I was able to take myself off of antihistamines entirely! YAY! I was having all kinds of CRAZY histamine like responses.
I'm going to take a few quotes from Yasko's book (you can get free download off her site). It's complicated:

"Lack of BH4 may result in mast cell degranulation and lead to higher histamine levels, which can produce symptoms such as red ears and other hypersensitivity reactions." BH4 production is directly impacted by CBS problems. Elevated ammonia uses up BH4 before it can be used for any other essential processes.

"Quercetin can be used to limit mast cell degranulation for those individuals who are COMT—/–or COMT +/–. In addition, Petadulex (butterbur) may be helpful in balancing allergic/histamine reactions." I believe I might be COMT ++, so while I have used Quercetin in past with mixed results, but once I freed up BH4, I had to rapidly take myself off of all dopamine precursors (which Quercetin is) because my own dopamine supplies kicked in.

"Briefly, if methylation is low and T cell production is low, then histamine levels tend to be high. Histamine is linked to inflammation, a contributing factors to leaky gut as well as allergies. With the underactivity of T cells, B cell activity can take over, which can lead to autoimmune issues like allergies and food sensitivities. That’s why so many children with autism benefit from a gluten-free, casein-free diet."

"Histamines, as I mentioned earlier, cause allergic reactions when they are released in response to antigens. Histamine levels in your body are dependent on the methylation cycle because histamines are broken down, or deactivated, by receiving a methyl group. Impaired methylation therefore leads to abnormally high levels of histamine and increased allergic sensitivity, something we often see in children with autism."
*********************************************************************************************************************************
Can anyone please help me figure out what I'm doing wrong? I found out I have the double MTHFR mutation after suffering an endocrine and adrenal system crash a year and a half ago. I am on supplemental hormones including cortisol and started taking mb12 and methyl folate. Since then I have developed an intolerance to histamine containing foods and suffer severe flushing and flashes, itching, irritability and other symptoms. My hunch is that supplementation with the methyl groups got certain parts of your system working, but it is getting jammed up due to possible CBS issues and interference with BH4.

I suspect CBS issues due to severe protein metabolism issues and problems with sulfur foods. I can't even take amino acid supplements. What happens? Fatigue?

I am taking LDN (Low Dose Naltrexone- an immunemodulater) and it helped reduce my environmental allergies but I'm wondering if it had anything to do with the histamine intolerance developing. I'm not an expert, but when I looked up the chemical composition of Naltrexone: 17-(cyclopropylmethyl)-4,5α-epoxy- 3,14-dihydroxymorphinan-6-one It looks to me that there is a methyl group involved, which would explain why symptoms would be increasing.

I have a history of fibromyalgia, severe food allergies and protein intolerance, OCD and anxiety Read through http://www.heartfixer.com/AMRI-Nutrigenomics.htm All kinds of "crazy" things can arise with CBS mutation, and interrupted BH4 production, as BH4 production is so closely tied to neurotransmitter synthesis. Do you know your CBS status?
All of those resolved on a very low protein raw vegan diet but after a decade of feeling great on it I suffered the crash a year and a half ago.Yes, your story is very similar to mine. I was eating quite normally, and then following a period of acute stress (divorce, change in city, training for marathons), I noticed that I didn't tolerate meat very well. I became a vegetarian because I rationalized as per the the "spiritual" vein I was on at the time that my body didn't want meat anymore, ha, ha... and so I didn't eat meat, then I was raw vegan, then I was a fruitarian! Rationalizing each step, because I felt better as I became more restricted. What I ended up with a severe deficiency in amino acids and resulting deepening of depression. What happens when you have amino acids? Do you feel fatigued, or experience excito-toxicity? It could be that the pathway to metabolizing them is very week. I know that I have a problem with glutamate to GABA conversion, so I **cannot** have an amino acid supplements with glutamate like substances in them or aspartic substances either.

In health,
Star

 

[Freddd]

Hi all,

Can anyone please help me figure out what I'm doing wrong? I found out I have the double MTHFR mutation after suffering an endocrine and adrenal system crash a year and a half ago. I am on supplemental hormones including cortisol and started taking mb12 and methyl folate. Since then I have developed an intolerance to histamine containing foods and suffer severe flushing and flashes, itching, irritability and other symptoms.

I suspect CBS issues due to severe protein metabolism issues and problems with sulfur foods. I can't even take amino acid supplements.

I am taking LDN (Low Dose Naltrexone- an immunemodulater) and it helped reduce my environmental allergies but I'm wondering if it had anything to do with the histamine intolerance developing.

I have a history of fibromyalgia, severe food allergies and protein intolerance, OCD and anxiety. All of those resolved on a very low protein raw vegan diet but after a decade of feeling great on it I suffered the crash a year and a half ago.

If this is enough info can anyone please shed any light on the histamine/methylation connection or point me in the right direction?

Due to funds I'm not seeing a specailist in this area but do have a supportive GP that my insurance pays for that will order tests for me if I ask.

Thanks so much!

Audrey

Hi Audrey,

What is a full list of all the symptoms in response. So are they generally contained in Set 1, Set 2 and/or Set 3 or not at all?

Let's pin it down by symptoms what is occurring.


Set 1

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

Set 2
IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, 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, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.

Set 3

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.

 

[brenda]

My allergies and intertestitial cystitis increased while taking methyl b`s so I switched to hydroxyb12 and folinic. While I was taking methyl`s I thought I caught food poisoning twice from canned fish and frozen clams but now I wonder if it was a histamine problem. However, I was vomiting (with blackouts and seizures) and I don`t know if high histmine does that. On my OA test, citrate was off the charts so I dont know if that is connected.

The best I ever did was on the macrobiotic diet so I have started it but still eating a little meat and not on all days as I adjust tot he diet. Still eating eggs as well but will give them up soon when I find something to eat for breakfast.

 

[Freddd]

My allergies and intertestitial cystitis increased while taking methyl b`s so I switched to hydroxyb12 and folinic. While I was taking methyl`s I thought I caught food poisoning twice from canned fish and frozen clams but now I wonder if it was a histamine problem. However, I was vomiting (with blackouts and seizures) and I don`t know if high histmine does that. On my OA test, citrate was off the charts so I dont know if that is connected.

The best I ever did was on the macrobiotic diet so I have started it but still eating a little meat and not on all days as I adjust tot he diet. Still eating eggs as well but will give them up soon when I find something to eat for breakfast.

Hi Brenda,

The reason I ask about symptoms, is that by pinning an interpretation to it instead of symptoms, most possibilities of interpretation have been cut off. So when you say "a histamine problem", low folate and methylblock can cause massive inflammatory responses in the body, lots of allergic responses, vomiting, asthma responses, inflamed epithelial tissue (interstitial cystitis) and all sorts of similar problems. Your symptoms appear to be set two which is folate deficiency or insufficiency. Low b12/folate can cause blackouts and seizures. Some of these things can be massively increased by B2 for instance, glutathione can cause them as well. Even NAC can cause such problems, identical symptoms, there are other possibilities. The wrong interpretations keeps it going indefinitely. SO a person who has donut hole folate insufficiency with all these folate deficiency symptoms who won't try enough folate to overcome it because of the hypothetical structure they are working from will be sick with it indefinitely because it can't be worked through using those rules.

 

[whitmore]

Hi:

Something just doesn't make sense here.

Similar to the other posters on this thread, I have been taking MB12(injections in my case, for 3 months) and various doses of methylfolate(including deplin) and have NEVER had such severe high histamine reactions. All skin stuff. Rash all over my back that will not go away and which itches intensely. In fact, I've never had skin issues before.
When I was taking higher doses of MB12 and methylfolate it was even worse! I could hardly keep my eyes open I was so fatigued and the I was scratching myself until I bled. I still do, but it's less intense, now I'm injecting about 1.25 mg of MB12 and taking 200mcg of methylfolate. I use a low dose hydrocortisone cream once a day and have started to take turmeric, which has helped, but both are band-aids, the avoidance of which was the point to the methylation protocol!

I feel that in some cases, mine included, there's something else going on and that increased methylfolate is not the answer. The increased methylation has to be causing an increase in something, the breakdown of which is blocked in another cycle. I don't know enough about what that blocked process could be and what can be done about it.

If anyone else has experience high histamine reactions and has got to the bottom of it, would love to know how you figured it out and what worked for you!

Sue

 

[Freddd]

Hi:

Something just doesn't make sense here.

Similar to the other posters on this thread, I have been taking MB12(injections in my case, for 3 months) and various doses of methylfolate(including deplin) and have NEVER had such severe high histamine reactions. All skin stuff. Rash all over my back that will not go away and which itches intensely. In fact, I've never had skin issues before.
When I was taking higher doses of MB12 and methylfolate it was even worse! I could hardly keep my eyes open I was so fatigued and the I was scratching myself until I bled. I still do, but it's less intense, now I'm injecting about 1.25 mg of MB12 and taking 200mcg of methylfolate. I use a low dose hydrocortisone cream once a day and have started to take turmeric, which has helped, but both are band-aids, the avoidance of which was the point to the methylation protocol!

I feel that in some cases, mine included, there's something else going on and that increased methylfolate is not the answer. The increased methylation has to be causing an increase in something, the breakdown of which is blocked in another cycle. I don't know enough about what that blocked process could be and what can be done about it.

If anyone else has experience high histamine reactions and has got to the bottom of it, would love to know how you figured it out and what worked for you!

Sue

Hi Sue,

I had such a severe response to B2 that wasn't going away that I have done that which I have done before. I've cut back to just the MeCbl/AdoCbl and methylfolate. The angular cheilitis is quieting down. GUT transit time has returned to about 36 hours from 12 hours. That happens when the inflammation in the digestive system quiets down. The response to MeCbl/AdoCbl and methylfolate is that all the inflammation is subsiding. Since their lack causes a large increases in inflammation in epithelial, endothelial and other tissues, their sufficiency gets rid of it. My doc was surprised the first time when the CRP went promptly to < 1.0. Other things though, like B2, causes the inflammation to skyrocket in the form of sort of an extreme donut hole folate insufficiency. After all these things quiet down, which they are rapidly, I will start adding things in and re-titrate all the basics. However, 200mcg of methylfolate will cause massive numbers of symptoms of the folate insufficiency type. For me at least, adding in daily food from the garden causes it's own problems. Low methylfolate causes big histamine reactions.

 

[brenda]

Freddd

The histamine response came while I was titrating folate and methylb12. I have to stop because of the IC. I cannot bear that. All of my allergy symptoms increase - sneezing, MCS. B2 does not do it. I can take that no trouble. I passed out 20 years ago last time I vomited after pesticide exposure but no seizures. I have no recollection of that happening before though seem to remember. My mother telling me it did happen during whooping caught. I think it is a vagus nerve problem. I agree with the previous poster - something else is going on that needs fixed.

 

[Freddd]

Freddd

The histamine response came while I was titrating folate and methylb12. I have to stop because of the IC. I cannot bear that. All of my allergy symptoms increase - sneezing, MCS. B2 does not do it. I can take that no trouble. I passed out 20 years ago last time I vomited after pesticide exposure but no seizures. I have no recollection of that happening before though seem to remember. My mother telling me it did happen during whooping caught. I think it is a vagus nerve problem. I agree with the previous poster - something else is going on that needs fixed.

Hi Brenda,

The severe response to B2 was insatiable hypokalemia, the appearance of severe folate deficiency with highly increased allergies and epithelial problems, nausea, gut paralysis (insatiable hypokalemia, severe IBS with transit time below 12 hours. It was not obvious at all that it was the b2 except that I increased it the day before the problems started and they started relieving the day after I stopped the increase. So where is the difference between your "severe histamine response" and the B2 triggering certain severe aspects of folate deficiency, allergies and inflammation, and potassium deficiency symptom?

 

[whitmore]

Fred:

Thanks for taking the time to reply, but I have to re-iterate--something else is happening here. I took 7.5 mg of methylfolate and 5 mg of MB12 for a few weeks while all hell broke loose. I'm pretty tough and prepared to put up with a lot of discomfort, but when I had problems staying awake at work I knew I had to back down. Better now I've lowered the dose, but the state of my back is still shocking. Like the other poster, I can take any of the other Bs without problem in very high doses. I have no seasonal or food allergies and am just occasionally bothered by very strong chemicals.

There must be others out there who've had similar reactions. If so, what worked?

Sue

 

[Valentijn]

Thanks for taking the time to reply, but I have to re-iterate--something else is happening here. I took 7.5 mg of methylfolate and 5 mg of MB12 for a few weeks while all hell broke loose. I'm pretty tough and prepared to put up with a lot of discomfort, but when I had problems staying awake at work I knew I had to back down. Better now I've lowered the dose, but the state of my back is still shocking. Like the other poster, I can take any of the other Bs without problem in very high doses.

I have trouble with methylB12 too, if I take much of it. I do much better on hydroxyB12, an inactive form which the body can choose to convert to methylB12 or adenosylB12 based on what the body needs. It also helps with my pain issues quite a bit.

Most people have no problem making this conversion. Carefully dosing and balancing methyl- and adenosylB12 should only be necessary if hydroxyB12 doesn't work for you.

 

[Freddd]

I have trouble with methylB12 too, if I take much of it. I do much better on hydroxyB12, an inactive form which the body can choose to convert to methylB12 or adenosylB12 based on what the body needs. It also helps with my pain issues quite a bit.

Most people have no problem making this conversion. Carefully dosing and balancing methyl- and adenosylB12 should only be necessary if hydroxyB12 doesn't work for you.

Hi Valentijn,

the body can choose to convert to methylB12 or adenosylB12

NONSENSE! The body can't "choose" to convert. The conversion happens as a small part of recycling of active b12s. It is a starvation workaround.

if hydroxyB12 doesn't work for you

As HyCbl is about 1% effective for 30 out of 300 symptoms and is not known to be entirely effective as b12 for ANYBODY, has NEVER been validated in any study in comparison to MeCbl/AdoCbl, it is a forgone conclusion that HyCbl will not work on all B12 deficiency symptoms for 99.99% of people.

Most people have no problem making this conversion

More or less true up to perhaps 10mcg a day which does not provide sufficiency for healing and repairing damage.

If HyCbl REALLY worked as well as AdoCbl/MeCbl The folks in the UK would not be as sick in the same ways as the people in the USA. The ONLY country that stands out different is Japan where the official form is MeCbl and minimum alert level is 550pg/ml and has 1/5 the Alzheimer's rate as the USA/UK.

Good luck.

 

[brenda]

Freddd I had no hypokalemia. B2 has a beneficial effect though I have not taken a dose higher than 25mg.

 

[Freddd]

Fred:

Thanks for taking the time to reply, but I have to re-iterate--something else is happening here. I took 7.5 mg of methylfolate and 5 mg of MB12 for a few weeks while all hell broke loose. I'm pretty tough and prepared to put up with a lot of discomfort, but when I had problems staying awake at work I knew I had to back down. Better now I've lowered the dose, but the state of my back is still shocking. Like the other poster, I can take any of the other Bs without problem in very high doses. I have no seasonal or food allergies and am just occasionally bothered by very strong chemicals.

There must be others out there who've had similar reactions. If so, what worked?

Sue

Hi Sue,

There must be others out there who've had similar reactions. If so, what worked?


Those that experience that type of tiredness often find it relieved when they add the other half of the Deadlock Quartet, AdoCbl and L-carnitine fumarate, to the first half, MeCbl and l-methylfolate.

 

[Crux]

It looks like there can be many causes for an inflammatory response to these protocols.
Some people with COMT++ snps may react negatively to added methyl groups.
This would include folates.

Other people may have pre-existent conditions, infectious, autoimmune, etc. With these conditions, macrophages are produced, and they develop extra folate receptors, thereby allowing the inflammatory process to proceed.
http://www.ncbi.nlm.nih.gov/pubmed/22094710

Personally, I can only tolerate a certain amount of methylcobalamin, so I add extra hydroxocobalamin.
Recently, I became intolerant of folate supps., so I've stopped them. I'm going to wait some months before retrying folate, but, I will keep that dosage very low.

I don't know what snps I have yet, but I do have autoimmune problems, so, that may be why I have an inflammatory response to folate supps.

I have found niacinamide and riboflavin, in relatively high doses, to be anti-inflammatory agents, in my case.

http://www.ncbi.nlm.nih.gov/pubmed/23641923

 

[Freddd]

It looks like there can be many causes for an inflammatory response to these protocols.
Some people with COMT++ snps may react negatively to added methyl groups.
This would include folates.

Other people may have pre-existent conditions, infectious, autoimmune, etc. With these conditions, macrophages are produced, and they develop extra folate receptors, thereby allowing the inflammatory process to proceed.
http://www.ncbi.nlm.nih.gov/pubmed/22094710

Personally, I can only tolerate a certain amount of methylcobalamin, so I add extra hydroxocobalamin.
Recently, I became intolerant of folate supps., so I've stopped them. I'm going to wait some months before retrying folate, but, I will keep that dosage very low.

I don't know what snps I have yet, but I do have autoimmune problems, so, that may be why I have an inflammatory response to folate supps.

I have found niacinamide and riboflavin, in relatively high doses, to be anti-inflammatory agents, in my case.

http://www.ncbi.nlm.nih.gov/pubmed/23641923

Hi Crux,

Have you read THE LARGE GORILLA ... ADENOSYLCOBALAMIN. It is Many time more effective anti-inflammatory that MeCbl and especially HyCbl. It also has NOTHING to do with methylation except when it is stalled for lack of ATP requiring the other half of the Deadlock Quartet to get operational. So the 3 main known functions of AdoCbl is major anti-inflammatory, processing of fatty acids for use as myelin and occupying mitochondria as an important part of the Krebs' cycle turning out ATP upon which most all biochemical reactions in the body are dependent. Autoimmune problems appear to be get started while in methyltrap.

 

[camas]

For anyone suffering from itching/burning/flushing, I'll put in a plug for Magic Masto Cream. You can google the recipe. I make mine by mixing a bottle of nasalcrom into a jar of cetaphil lotion. It seems to work much better than any other creams I've tried (short of steroids, of course) and is pretty innocuous.