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

[minniemom2011]

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!

 

[Joopiter76]

This will improve on methylation treatment. Try methylfolate out. the air hunger is related to sulfite intolerance and will also improve on methylation treatment and molybdenum supplementation. try quercetin against the histamine issue. take theralc and butyrate for your gut. If the gut is damaged, the histamines will not be inactivated but go diretly into your body.

 

[minniemom2011]

This will improve on methylation treatment. Try methylfolate out. the air hunger is related to sulfite intolerance and will also improve on methylation treatment and molybdenum supplementation. try quercetin against the histamine issue. take theralc and butyrate for your gut. If the gut is damaged, the histamines will not be inactivated but go diretly into your body.

Thanks Joopiter. The only thing is I've been reading over and over to not take folic acid or B supplements if you are histamine intolerant. Is the methylfolate much different than folic acid? I'm also worried about the B vits on the methylation protocol. Have you had high histamine issues?

 

[Joopiter76]

You need methylation to break down histamine. So the only chance is to try it out. learning by doing. maybe tra to get some DAO caps and take them wih meals. Avoid anything with high histamine. I could not tolerate any cheese but now I can but I only eat one or two slices. so the histmaine problem is a methylation problem and if you avoid improving methylation because of histmine problems you will never get rid of them.

 

[Shellbell]

Minniemom, I also suggest looking at Standard Process Antronex. My doctor gave this too me as my histimine levels were high. This supplement improves the circulation in the liver which helps bring histimine levels down. I started taking it right before the spring allergy season and haven't had a problem this year. My allergies seem to be under control. He has me take 1 per meal 3x a day but I thought I read you can take more if needed. I am also finding that I can eat a few more foods than before.

Also my 91 year old mom started taking this for a persistent cough she has had for decades. She has been on this now for about a month. Her doctor felt that her cough was being caused by allergies, but we wanted to avoid meds. Her cough is now down to a minimum and seems to be improving daily.

I don't think Antornex is curative, but helps assist while working on methylation. I agree with Joopiter that methylation is the way to go to fix the underlying problem.

 

[Freddd]

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!

Hi Minniemom,

Sounds like some of the things that come up from glutathione induced folate deficiency or from folic/folinic acid triggered paradoxical folate deficiency or just plain methylfolate deficiency. Metafolin could make a huge difference with mb12. It is 100% different from folic/folinic acid.
http://forums.phoenixrising.me/show...ucing-deficiency-called-quot-ddtox-quot/page4

 

[minniemom2011]

Hi Minniemom,

Sounds like some of the things that come up from glutathione induced folate deficiency or from folic/folinic acid triggered paradoxical folate deficiency or just plain methylfolate deficiency. Metafolin could make a huge difference with mb12. It is 100% different from folic/folinic acid.
http://forums.phoenixrising.me/show...ucing-deficiency-called-quot-ddtox-quot/page4

Thanks Freddd. I would really like to try this, but I have to admit I'm a bit scared! I leave for vacation in 2 weeks and really don't want to get any worse. I know you can't possibly know how I'll react to the B12 and Metafolin, but what's the worst case scenarios you've seen/heard about? Any idea? I'm just debating whether to try it now and hope for a great improvement for vacation or hold off until afterwards and avoid a slump. Do most people see a detox reaction with this? If I do react negatively and quit the supplements will it be overcome within a few days?

Also, I did buy the supplements based on your last post to me. I'm hoping I got everything right. Can you please tell me exactly how much of each you would start with? Here's what I have:

Country Life Active B-12 Dibencozide (3000 mcg w/ 200 mcg folic acid)
Jarrow B-Right
Jarrow Methyl B-12 (5000 mcg)
Life Extension Optimized Folate (L-Methylfolate 1000 mcg)

Thank you very much!

 

[Freddd]

Thanks Freddd. I would really like to try this, but I have to admit I'm a bit scared! I leave for vacation in 2 weeks and really don't want to get any worse. I know you can't possibly know how I'll react to the B12 and Metafolin, but what's the worst case scenarios you've seen/heard about? Any idea? I'm just debating whether to try it now and hope for a great improvement for vacation or hold off until afterwards and avoid a slump. Do most people see a detox reaction with this? If I do react negatively and quit the supplements will it be overcome within a few days?

Also, I did buy the supplements based on your last post to me. I'm hoping I got everything right. Can you please tell me exactly how much of each you would start with? Here's what I have:

Country Life Active B-12 Dibencozide (3000 mcg w/ 200 mcg folic acid)
Jarrow B-Right
Jarrow Methyl B-12 (5000 mcg)
Life Extension Optimized Folate (L-Methylfolate 1000 mcg)

Thank you very much!

Hi Minnieme,

While I had a huge startup response to methylb12, I also had near normal energy restored in 1 hour. Burning tongue, bladder and muscles were all 100% done burning in 10 days. The downside was that every pain in my body, every neuropathy (I had them all) was perceived far more clearly and intensely. Those were 90% better in 9 months, the muscles healed in several months after starting adb12 at month 9.

As regards "Detox" so far I have seen nothing at all to indicate that "detox" is anything but intensified folate/b12 deficiencies. For me all episodes of "detox" started resolving within hours of starting Metafolin when not blocked by glutathione, folic acid or folinic acid. The reaction to Metafolin is completely opposite of the reaction to folic/folinic acid in susceptible people. It can be intense but intensity isn't "bad" and the inflammation starts coming down in hours and cells start repruducing within hours. Make sure you have potassium before you start. That is a real genuine problem also sometimes called "detox" because of the muscle spams, heart palpitations and mood changes. Mb12 and methylfolate (assuming it works or at least doesn't block like folic/folinic) can cause immediate deficiencies in other vitamins and minerals.

I don't think that they would cause a slump. More likely would be a giddiness from increased energy and neurological functioning. Both mb12 and Metafolin have return of symptoms within 3 days of cessation.

The 800mcg Metafolin is in stock at iherb while the 400mcg is out of stock currently.

 

[dannybex]

Freddd knows what I'm going to say here, but this is just my two cents.

Freddd...correct me if I'm wrong, but didn't you come from kind of a comatose-like state due to your spinal issue and auto accident(?), where most or many of us are coming from a 'wired-but-tired' state where we can become very agitated from even small doses of methyl b12. Minniemom seems to have that kind of 'wired-but-tired' anxiety...

Kurt is doing well on the methyl-b12 and supporting supplements, but he had to start at a dose of 250 mcgs for several weeks before he could tolerate going higher. That's 1/4 of a 1000mcg methyl-b12.

I tried to start at 1/4 of a 5,000mcg pill about 10 days ago (1,250 mcgs) and within four days I again had to stop as I was climbing the walls with anxiety.

I hope to start again in a few days, but this time at 250 mcgs.

Just my two cents.

 

[minniemom2011]

Thank you Danny and Freddd. I do appreciate your help and input so much. I think, just based on the fact that I could experience some uncomfortable issues, it's probably best if I want until I return from vacation.

I'm going to order the Metafolin so I have it for when I return, but the last thing I want to do is start something new and have it backfire on me so that I'm unable to enjoy my family on this trip . . . or make their vacation miserable!

Thanks again for the advice.

Freddd - if you happen to get a chance, could you please let me know the exact amounts you would suggest I start with for each of the supplements? Thanks so much!

 

[Freddd]

Freddd knows what I'm going to say here, but this is just my two cents.

Freddd...correct me if I'm wrong, but didn't you come from kind of a comatose-like state due to your spinal issue and auto accident(?), where most or many of us are coming from a 'wired-but-tired' state where we can become very agitated from even small doses of methyl b12. Minniemom seems to have that kind of 'wired-but-tired' anxiety...

Kurt is doing well on the methyl-b12 and supporting supplements, but he had to start at a dose of 250 mcgs for several weeks before he could tolerate going higher. That's 1/4 of a 1000mcg methyl-b12.

I tried to start at 1/4 of a 5,000mcg pill about 10 days ago (1,250 mcgs) and within four days I again had to stop as I was climbing the walls with anxiety.

I hope to start again in a few days, but this time at 250 mcgs.

Just my two cents.

Hi Dan,

Freddd...correct me if I'm wrong, but didn't you come from kind of a comatose-like state due to your spinal issue and auto accident

No, I didn't. I had 3 vertebrae with compression fractures down the right side with two lopsided compressed disks between them. I had a number of other bulging disks, damaged dorsal horns on the left side from hyper-extension that caused atrophy in some of my back muscles and a re-injury of my lower back football injury. That was in February 1972. I was back working by Christmas of 1972 (that was the longest 10 months of my life) and skiing in November of 1973, though not ever again as a patrolman or instructor. I became a vegetarian in October 1980. In late November or early December 1987, after skiing had already begun and I skied with my youngest, my son, the only time in his life, my wife and I came down with a "miscellaneous" virus along with hundreds or perhaps thousand of others in our area. I woke up totally dizzy, vomiting, weak as a kitten, terrible muscle pain and barely managed to crawl, literally, into the bathroom. After 6 months I was able to walk as much as 500 feet and my wife was recovering. I was totally fatigued and stayed that way for 16 years. I had better and worse periods over that 16 years but in general it was all downhill with more and worse symptoms.

where most or many of us are coming from a 'wired-but-tired' state where we can become very agitated from even small doses of methyl b12. Minniemom seems to have that kind of 'wired-but-tired' anxiety...

Lot's of people with more of the neurological-mood mb12 deficiency have that. That anxiety is a well documented b12 deficiency symptom. It fades over several months. I had a total collapse of my mitochondrial energy generation and responded very strongly to adb12 and even more so to L-carnitine fumarate. I had lactic acid muscle burn for 16 years. In watching a multitude of people with anxiety as a deficiency symptom as the deficiency is lifted and people adjust to the increased energy, the anxiety goes away. It appears to go away more quickly if they use higher doses and get the "differences" over with quickly. It doesn't fade until equilibrium is reached. If Small doses are used the time to equilibrium might be stretched out for 6 months or more. If a large dose is used in might be compressed into a few weeks. Fear and anxiety prevent most from doing that. People with anxiety tend to react to changes with anxiety.

I tried to start at 1/4 of a 5,000mcg pill about 10 days ago (1,250 mcgs) and within four days I again had to stop as I was climbing the walls with anxiety.

That is about the size dose I started with, 1000mcg. The first hour I rushed like I hadn't rushed since orange sunshine decades before. I know people who freaked because of that rush. The "stimulated" feeling was heavy duty for 3 months. I turned it into exhilaration. It could have been anxiety but I don't turn that kind of thing into anxiety. It lasted until I started trying to max it out. It disappeared, decreasing noticeably each day I increased towards 25mgs or more. It decreased in a week of increase from 5 to 25mg and went away the following week after being unchanged for 3 months on 1-5mg.

It lasted six months as I titrated l-carnitine fumarate. I started at 125mg and it basically remained unchanged until I hit 1000mg and it was gone in a week then. So what is that makes you interpret that energized feeling as anxiety? I really don't know because I just don't do "anxiety". I don't think I am feeling it any differently. I think I am interpreting it differently.

I hope to start again in a few days, but this time at 250 mcgs.

Stop and start appears to cause bigger and bigger oscillations. What I have suggested to others and it appears to work is to take 5mg 5 times in a day or 10-20 mgs in a single dose. The response in NOT linear. It isn't 4x worse because you take 5mg instead of 1.25. It isn't 16x worse at 20mg. It typically is a very minor difference. It is a proportionality for starters. If you typically get 5mcg in food and you absorb 50mcg from 250mcg dose it is a 10x increase and boy do you notice that. That might be the same effect as going from 50mcg absorbed to 500mcg absorbed (2500mcg dose) and another 10x increase from 2.5mg to 25mg. However, it isn't even straight proportionality. It decreases faster than that. In a small double blinded trial I tried with local subjects nobody could tell the difference between 1mg and 5mg by effect. However, everybody could tell the 5 star brands from the 1 or 2 star mb12 brands. In the initial symptoms versus 1 hr response to a challenge dose, about 1000 people in all, there was no reported difference by dose so I used the 1mg Jarrow as the cheapest ones I could. The 5mg Jarrow or 1mg Enzymatic Therapy made no difference in people's response so why spend a lot more. Studies have shown however that the healing is dose proportionate, but not linearly so, not even a full proportionate increase. It generally takes about 1/3 of a doubling to make a noticeable difference of sensory phenomena, a Just Noticeable Difference. Do that a couple of days and then drop back to 1mg (or 1250mcg) and it will be as nothing. That has worked for others.

 

[Freddd]

Thank you Danny and Freddd. I do appreciate your help and input so much. I think, just based on the fact that I could experience some uncomfortable issues, it's probably best if I want until I return from vacation.

I'm going to order the Metafolin so I have it for when I return, but the last thing I want to do is start something new and have it backfire on me so that I'm unable to enjoy my family on this trip . . . or make their vacation miserable!

Thanks again for the advice.

Freddd - if you happen to get a chance, could you please let me know the exact amounts you would suggest I start with for each of the supplements? Thanks so much!

Hi Minniemom,

I would say this, I was so desperate and so totally unable to enjoy a vacation where I was at, that the fear of having a possible unpleasant response after finding out the solution and having it in my hand only delayed my starting by 15 minutes, waiting until I got home and was sitting safely at my desk. I had strong expectations of healing and of avoiding a wheelchair. The strong expectation of misery and blatant fear I see can't help but be causing anxiety attacks. I would love to be handing out some placebos on this one to see what the rate of anxiety attack is in the absence of the active substance. Seeing the vastly different responses on two groups of people with the same symptoms with different mind-sets has been very educational. Be careful that you are not creating your own expectations. The mb12 directly energizes and affects the neurology with which you perceive and think. In a vegetarian culture several mcg of mb12/adb12 in the fish and meat was used to induce potent spiritual experiences because that was the expectation and mindset. Set up a ritual with prayer and meditation, expect a re-vivifying spiritual experience and you might have it. I did, and do.

 

[dannybex]

Hi Freddd,

Thanks for clearing up the details of your story and all you've endured over so many years. I'm sure you're sick to death of repeating the same info over and over. Hopefully you're cutting and pasting most of it after so many years?

I'm sorry for using the word 'comatose'. I'm blaming my foggy, foggy brain. But that's the impression I had, and just found the post where we first talked about our very different symptoms and where I may have misunderstood you:

http://forums.phoenixrising.me/show...Methylfolate-Deficiencies&p=153392#post153392

From your post #83:

"Correct me if I'm wrong, but it seems to me like you came from a place of (near) paralysis, which is the opposite of many of us who are 'wired but tired', myself being 'extra wired' (lately).

Thank-you, you are the first person I have talked to that has described this 'wired but tired' making that distinction. I was one of those with no energy at all, mental or physical. I had multiple sleep disorders and took Provigil which usually kept me from going face down in dinner."


I think that's where I got the 'comatose' idea (mixing up 'near paralysis' with 'comatose), and why I was trying to explain here how different that is from a 'wired-but-tired' experience -- before the addition of any b12 or folates.

Then when those are added, some of us become extremely, extremely agitated and anxious. Very different from "stimulated" or "energized". Very, very different, and I think that's due to the generalized anxious, 'wired' feeling we've had with this illness or syndrome, compared to the lack of mental or physical energy that you experienced.

Many of us have 'too much' mental energy -- our brains or neurons are already overfiring, which also explains why we can't sleep even though we desperately need to, and why we can't think or concentrate clearly when we need to. Perhaps Kurt or someone else can explain this better than I can...

Anyway, I'll shut up. Hope you understand the concept from my point of view as I now understand yours a little better too.

Thanks Freddd for all your help!

Dan

 

[Athene]

Hi Minniemom,

A few tips on Histamine intolerance/high histamine, which I was also diagnoed with a couple of years ago.

First, yes you are under methylating. The body eliminates histamine inside cells using methylation and histamine outside cells by an enzyme called Diamine oxidase. To improve methylation, you need to take B vitamins. People with histamine intolerance have B6 deficiencies and C deficiencies, because these are the vitamins used by the body to synthesise diamine oxidase. Therefore, what you have been told about B vitamins is the opposite of the truth.

Taking a massive C supplement will also help with your adrenal fatigue, of course. If you buy a timed release and buffered version you can get up to huge doses. I took 10,000mg daily for a long time. You start with 1,000 mg and add another 1000mg every couple of days till you get diarrhoea, which indicates your maximum absorption capability.

Normal antihistamines don't remove histamine, they just block receptor sites. This means you still have to do all the eliminating. There is a syunthetic form of diaminie oxidase called DAOSIN, made in Germany, that you can order on the internet (Google it). If you take this as well as a normal antihistamine, you get far better and faster results.

By far the most informative and useful article I have read on histamine intolerance is this one
http://www.ajcn.org/content/85/5/1185.full

It is well worth studying the diagrams in detail as they explain exactly how histamine works on the body and brain. You will certainly start to see that histamine is responsible for a huge range of symptoms that you had never realised before. This is useful in learning how to manage the problem and reading early warning signs of triggers.

Ultimately the best way to handle this condition is to learn how to avoid what sets you off, and to improve your body's ability to eliminate histamine. Therefore, follow the methylation protocol and add vit C and Vit B6 in large doses. I have been doing this for nearly 2 years and my histamine intolerance has improved spectacularly.

You were also advised to take molybdenum to help with the sulphur problem. I have been doing this for 2 years as well and it has finally helped a lot, but only when I went up to taking a very high does. I was on 100mcg a day which was no use, now for 6 months I have been taking 4000mcg a day and getting really noticeable results. You need to avoid copper rich foods or supplements like the plague, because the reason you have sulphite intolerance and the reason moly helps is that you have excess copper in the body and moly helps the body excrete it.

 

[Freddd]

Hi Freddd,

Thanks for clearing up the details of your story and all you've endured over so many years. I'm sure you're sick to death of repeating the same info over and over. Hopefully you're cutting and pasting most of it after so many years?

I'm sorry for using the word 'comatose'. I'm blaming my foggy, foggy brain. But that's the impression I had, and just found the post where we first talked about our very different symptoms and where I may have misunderstood you:

http://forums.phoenixrising.me/show...Methylfolate-Deficiencies&p=153392#post153392

From your post #83:

"Correct me if I'm wrong, but it seems to me like you came from a place of (near) paralysis, which is the opposite of many of us who are 'wired but tired', myself being 'extra wired' (lately).

Thank-you, you are the first person I have talked to that has described this 'wired but tired' making that distinction. I was one of those with no energy at all, mental or physical. I had multiple sleep disorders and took Provigil which usually kept me from going face down in dinner."


I think that's where I got the 'comatose' idea (mixing up 'near paralysis' with 'comatose), and why I was trying to explain here how different that is from a 'wired-but-tired' experience -- before the addition of any b12 or folates.

Then when those are added, some of us become extremely, extremely agitated and anxious. Very different from "stimulated" or "energized". Very, very different, and I think that's due to the generalized anxious, 'wired' feeling we've had with this illness or syndrome, compared to the lack of mental or physical energy that you experienced.

Many of us have 'too much' mental energy -- our brains or neurons are already overfiring, which also explains why we can't sleep even though we desperately need to, and why we can't think or concentrate clearly when we need to. Perhaps Kurt or someone else can explain this better than I can...

Anyway, I'll shut up. Hope you understand the concept from my point of view as I now understand yours a little better too.

Thanks Freddd for all your help!

Dan

Hi Dan,

First, let me make clear that all data is data. I try to listen listen very carefully to people say. I find that reporting of symptoms is reliable but that interpretations and hypotheses are less so. Hypotheses have to be open to change if they are to be useful. Mine are continually evolving, such as with the current folate situation.

B12 deficiency causes all sorts of problems. For instance, very common is a hypersensitivity and massive overreaction to all sorts of things. At the reflex level, "brisk" reflexes are common along with lack of reflexes. Multiple chemical sensitivity, autoimmune responses, hypersensitive to light, sound, taste, odor, asthma, allergies, extreme mood and personality changes and so on all become "normal" with deficiency of b12/folate.

experience -- before the addition of any b12 or folates.

If you live in the USA and eat any white flour products, "fortified" cereals, energy drinks and many other foods, folic acid and cyanocbl are virtually unavoidable.

An interesting study a few years ago studied peoples' internalized understanding of physics. There were those who's internal understanding was Newtonian and those who's internalized understanding was "Road Runner/Coyote" (toontown) physics. Those with toontown physics internalized had a lot more automobile accidents than those who internalized Newtonian physics. I was a psych major in college. I have been kicked out of one medical practice for not having "placebo" effect from at least some of the multitude of drugs the doc tried me on during a "throw mud up on the wall and see what sticks" phase of treatment. People's habits of expectation do affect their responses in all sorts of things. As Leary talked extensively about, "set and setting" determined the course of a psychedelic trip. In one study a group of seminary students were given a psychedelic just before a very elaborate Easter Mass. They all had profound religious experiences. The placebo group had normal and ordinary Easter Mass experiences. One can direct the type of experience we have from many changes in perception.

"Wired but tired" makes plenty of sense in terms of b12 deficiencies, more of a lack of overall energy generation from body-adb12 deficiency coupled with a "hyper" response from CNS/CSF-mb12 deficiency. Those who continue through it despite startup intensification effects because they don't interpret it in a scary way tend to be done with in a matter of some weeks to months. I was physiologically depressed for decades but not psychologically depressed. I would report "depressed" for decades but then given a depression scale, I couldn't agree that any of the answers agreed with how I thought.

With the mb12, adb12, l-carnitine fumarate I was totally wired. I could have interpreted it as anxiety if I had been so inclined but I wasn't. I don't do anxiety. I don't get caught up in anxiety cycles normally. My usual response instead is to go into "problem solving mode". This is a learned response. When I was falling down a steep high bowl on ice towards rocks, instead of panic I got icy calm in high gear to solve the problem. People with "anxiety" can get caught up with anxiety over just about anything. The question is "why?" During my crashed years 3 quad shot espressos were my "party" drink (no alcohol, just lattes or mocha), good for several hours of having a good time. I don't do that any more, no need.

I'm just trying to figure how this all fits together.

 

[dannybex]

Hi Dan,

First, let me make clear that all data is data. I try to listen listen very carefully to people say. I find that reporting of symptoms is reliable but that interpretations and hypotheses are less so. Hypotheses have to be open to change if they are to be useful. Mine are continually evolving, such as with the current folate situation.

I understand and appreciate that Freddd.

B12 deficiency causes all sorts of problems. For instance, very common is a hypersensitivity and massive overreaction to all sorts of things. At the reflex level, "brisk" reflexes are common along with lack of reflexes. Multiple chemical sensitivity, autoimmune responses, hypersensitive to light, sound, taste, odor, asthma, allergies, extreme mood and personality changes and so on all become "normal" with deficiency of b12/folate.

I understand that too.

experience -- before the addition of any b12 or folates.

If you live in the USA and eat any white flour products, "fortified" cereals, energy drinks and many other foods, folic acid and cyanocbl are virtually unavoidable.

I don't eat any processed or fortified foods. Again, my agitation/anxiety/hypersensitiviies EXPLODED both when I was taking all those folic and folinic acids, and the hydroxb12, but also recently, when I took 1,250mcgs of methyl-b12.

An interesting study a few years ago studied peoples' internalized understanding of physics. There were those who's internal understanding was Newtonian and those who's internalized understanding was "Road Runner/Coyote" (toontown) physics. Those with toontown physics internalized had a lot more automobile accidents than those who internalized Newtonian physics... People's habits of expectation do affect their responses in all sorts of things...

I understand that too. Anticipation anxiety is certainly very real. It would be interesting to study a group of patients with severe ME/CFS that had not been involved in any sort of traumatic accident.

"Wired but tired" makes plenty of sense in terms of b12 deficiencies, more of a lack of overall energy generation from body-adb12 deficiency coupled with a "hyper" response from CNS/CSF-mb12 deficiency. Those who continue through it despite startup intensification effects because they don't interpret it in a scary way tend to be done with in a matter of some weeks to months.

Again, I'm not disagreeing with you. Kurt, for example, took the mb12 for a few weeks, then bumped it up a couple of times, and then, after adding the magnesium, vitamin C, and b6, found that the anxiety he had for 40 years, dissolved 2 days later. But he had to work up to a dose he could tolerate -- and that took several weeks at a low dose of 250 mcgs.

With the mb12, adb12, l-carnitine fumarate I was totally wired. I could have interpreted it as anxiety if I had been so inclined but I wasn't. I don't do anxiety. I don't get caught up in anxiety cycles normally. My usual response instead is to go into "problem solving mode". This is a learned response. When I was falling down a steep high bowl on ice towards rocks, instead of panic I got icy calm in high gear to solve the problem. People with "anxiety" can get caught up with anxiety over just about anything.

The question is "why?" During my crashed years 3 quad shot espressos were my "party" drink (no alcohol, just lattes or mocha), good for several hours of having a good time. I don't do that any more, no need.

I'm just trying to figure how this all fits together.

Me too Freddd.

And I think the fact that you could not only tolerate 3 QUADRUPLE shot expressos, but that they made you feel like you were having a good time, says it all.

Your threshold for any sort of anxiety state is much, much, much higher than mine, and I would suggest, a possible majority of patients with ME/CFS.

I haven't been able to tolerate coffee in any form for at least 10 years. About 15 minutes or so after I wake up, I feel like I've had two-three cups of coffee -- and I haven't. That will hopefully resolve with the mb-12 and other factors, but I'm going to have to start at lower doses than you did, and I might end up feeling "good" and/or better than I have in a long time...at lower doses.

The answer is...WE ARE ALL DIFFERENT.

That's common sense, right? The doses that you were able to start out with, that you can not only tolerate, but also the doses you NEED, and also the doses you require each day through the week are going to be different than doses others might require. That's all I'm trying to say.

 

[kurt]

Stop and start appears to cause bigger and bigger oscillations. What I have suggested to others and it appears to work is to take 5mg 5 times in a day or 10-20 mgs in a single dose. The response in NOT linear. It isn't 4x worse because you take 5mg instead of 1.25. It isn't 16x worse at 20mg. It typically is a very minor difference. It is a proportionality for starters. If you typically get 5mcg in food and you absorb 50mcg from 250mcg dose it is a 10x increase and boy do you notice that. That might be the same effect as going from 50mcg absorbed to 500mcg absorbed (2500mcg dose) and another 10x increase from 2.5mg to 25mg. However, it isn't even straight proportionality. It decreases faster than that. In a small double blinded trial I tried with local subjects nobody could tell the difference between 1mg and 5mg by effect. However, everybody could tell the 5 star brands from the 1 or 2 star mb12 brands. In the initial symptoms versus 1 hr response to a challenge dose, about 1000 people in all, there was no reported difference by dose so I used the 1mg Jarrow as the cheapest ones I could. The 5mg Jarrow or 1mg Enzymatic Therapy made no difference in people's response so why spend a lot more. Studies have shown however that the healing is dose proportionate, but not linearly so, not even a full proportionate increase. It generally takes about 1/3 of a doubling to make a noticeable difference of sensory phenomena, a Just Noticeable Difference. Do that a couple of days and then drop back to 1mg (or 1250mcg) and it will be as nothing. That has worked for others.

Fred and Dan et al...

While I agree with the part about stopping and starting can cause problems, I think starting with a high dose might be extremely dangerous for some people, particularly a person who is very toxic and has neurologic symptoms. Don't have time to go into details, but in the past I have used other protocols where people advocated 'pushing through' negative symptoms and some have suffered as a result. With one protocol I was using a woman took this idea so far that she ended up losing the ability to walk. She had MS which was in remission, and pushing a dose higher just because some other patients (not me) were telling her this was the 'only way' to get the benefit cost her the mobility she had recently regained, so back to the wheelchair...

People on B12 protocols who ramped up too fast have ended up in the ER, I think this is NOT a situation where pushing is a good idea. But definitely it is better to keep a steady dose. So my own recommend for any B12 protocol is to use a graded approach. Start with tiny and tolerable doses, such as the 250 mcg of mB12 that I started with. When any uncomfortable symptoms have subsided, then increase the dose a little at a time, until symptoms become a problem again. Then reduce dose a little, stay there while things calm down, and try again. I know Fred has advocated a graded approach before, but think someone reading the above info might get the wrong idea... so just wanted to clarify that.

One other point, while the activated forms of several vitamins can be more powerful, I think non-activated forms may be important for the more sensitive people who are starting a new protocol. The active forms can force processes in the body, and in some cases we may not have the resources to maintain them, which may be part of the reason they are shut-down. Only after learning about your own reactions to regular forms that the body can naturally activate, and learning what supporting nutrients you need, would I start experimenting with active forms that force processes. In the case of B6, for example, most people can easily convert that to p5p activated form. I think allowing the body to convert at its own rate is best, where that works, the body can control the situation better. Of course if there is a block, or a genetic conversion limit, you may need activated forms, and that will become apparent when the regular forms do not work, as Fred discovered with folate. But I would start with regular forms. I did that with B6 and also B12 (used cyano form for a few weeks first, to make sure I would tolerate B12, and also to restart methylation processes more gradually... also, I had used cB12 it in the past and knew it would not cause trouble). So by using regular forms first, I made sure I could tolerate the regular forms, before starting with activated forms (such as p5p and mB12/aB12). Then by starting gradually I have been able to work up to 8-10,000 mcg of B12 daily, including a mix of mB12, aB12 and hB12, but mostly mB12. That is 40 times more than I could tolerate the first few weeks!!! The graded approach can work.

One last point, please make sure you are well hydrated if you are starting a B12 therapy. If you are not moving fluids through well, then increasing the natural detox may just make a person more toxic. In my own case, I started drinking more herbal teas, I think that makes a difference. In fact, the B12 and B9 appear to have reduced if not stopped my diabetes insipidis type continual fluid loss symptoms almost completely, made more normal hydration possible again. Calming the nerves with B vitamins seems to help many different bodily functions normalize.

 

[minniemom2011]

Hi Minniemom,

A few tips on Histamine intolerance/high histamine, which I was also diagnoed with a couple of years ago.

First, yes you are under methylating. The body eliminates histamine inside cells using methylation and histamine outside cells by an enzyme called Diamine oxidase. To improve methylation, you need to take B vitamins. People with histamine intolerance have B6 deficiencies and C deficiencies, because these are the vitamins used by the body to synthesise diamine oxidase. Therefore, what you have been told about B vitamins is the opposite of the truth.

Taking a massive C supplement will also help with your adrenal fatigue, of course. If you buy a timed release and buffered version you can get up to huge doses. I took 10,000mg daily for a long time. You start with 1,000 mg and add another 1000mg every couple of days till you get diarrhoea, which indicates your maximum absorption capability.

Normal antihistamines don't remove histamine, they just block receptor sites. This means you still have to do all the eliminating. There is a syunthetic form of diaminie oxidase called DAOSIN, made in Germany, that you can order on the internet (Google it). If you take this as well as a normal antihistamine, you get far better and faster results.

By far the most informative and useful article I have read on histamine intolerance is this one
http://www.ajcn.org/content/85/5/1185.full

It is well worth studying the diagrams in detail as they explain exactly how histamine works on the body and brain. You will certainly start to see that histamine is responsible for a huge range of symptoms that you had never realised before. This is useful in learning how to manage the problem and reading early warning signs of triggers.

Ultimately the best way to handle this condition is to learn how to avoid what sets you off, and to improve your body's ability to eliminate histamine. Therefore, follow the methylation protocol and add vit C and Vit B6 in large doses. I have been doing this for nearly 2 years and my histamine intolerance has improved spectacularly.

You were also advised to take molybdenum to help with the sulphur problem. I have been doing this for 2 years as well and it has finally helped a lot, but only when I went up to taking a very high does. I was on 100mcg a day which was no use, now for 6 months I have been taking 4000mcg a day and getting really noticeable results. You need to avoid copper rich foods or supplements like the plague, because the reason you have sulphite intolerance and the reason moly helps is that you have excess copper in the body and moly helps the body excrete it.

Athene,

Thanks so much for all this information. I understand it was a couple of years ago that you started this, but do you recall what your initial reactions were like? I want to make sure I'm prepared for the worst and know what to expect! If I have a bad reaction I don't want to quit assuming it's doing more harm than good if it's something I should stick with. You said to start out wit hhigh dosages. What would you suggest for B6?

Thank you for the link on histamine intolerance. I could actually understand that! Most things are way over my head right now.

 

[minniemom2011]

One other point, while the activated forms of several vitamins can be more powerful, I think non-activated forms may be important for the more sensitive people who are starting a new protocol. The active forms can force processes in the body, and in some cases we may not have the resources to maintain them, which may be part of the reason they are shut-down. Only after learning about your own reactions to regular forms that the body can naturally activate, and learning what supporting nutrients you need, would I start experimenting with active forms that force processes. In the case of B6, for example, most people can easily convert that to p5p activated form. I think allowing the body to convert at its own rate is best, where that works, the body can control the situation better. Of course if there is a block, or a genetic conversion limit, you may need activated forms, and that will become apparent when the regular forms do not work, as Fred discovered with folate. But I would start with regular forms. I did that with B6 and also B12 (used cyano form for a few weeks first, to make sure I would tolerate B12, and also to restart methylation processes more gradually... also, I had used cB12 it in the past and knew it would not cause trouble). So by using regular forms first, I made sure I could tolerate the regular forms, before starting with activated forms (such as p5p and mB12/aB12). Then by starting gradually I have been able to work up to 8-10,000 mcg of B12 daily, including a mix of mB12, aB12 and hB12, but mostly mB12. That is 40 times more than I could tolerate the first few weeks!!! The graded approach can work.

Kurt,

Thank you for posting this. I'm wondering if I "pushed" something in m ybody that I shouldn't have by taking P5P - the active form of B6 a few weeks ago. I know B6 can cause an oxalate dump, which I think I may have experienced. It's interesting to me that B6 is also supposed to HELP with histamine issues, but I experienced the exact opposite and suddenly became histamine sensitive. Now I'm wondering if I just forced it in and my body was not ready to deal with it. It was not a large dose either - only 50 mg.

I'm not ready to try any new supplements just yet, but I think I'll heed your advice and take an inactive form of B6 next time I try it.

 

[kerrilyn]

Kurt,

Thank you for posting this. I'm wondering if I "pushed" something in m ybody that I shouldn't have by taking P5P - the active form of B6 a few weeks ago. I know B6 can cause an oxalate dump, which I think I may have experienced. It's interesting to me that B6 is also supposed to HELP with histamine issues, but I experienced the exact opposite and suddenly became histamine sensitive. Now I'm wondering if I just forced it in and my body was not ready to deal with it. It was not a large dose either - only 50 mg.

I'm not ready to try any new supplements just yet, but I think I'll heed your advice and take an inactive form of B6 next time I try it.

Minniemom, just wondering what did you experience with this histamine sensitivity? I think added B6 caused some issues with me when I started taking it recently with magnesium chloride, primarily a burning upset stomach, which I've not experienced with the Mag alone. Possibly some redness/rash on my knuckles and a bit of nausea.