Accidental success with Pepcid...High histamine? Methylation?

[fightingmom]

Interesting -- along the track of methylation pathway:

 

"High histamine individuals are inherently high in folic acid. Although folic acid is used along with B-12 in the production of methionine it is also involved in histamine production along with B-12. Consequently B-12 and folic acid are strictly avoided in high histamine patient care. These patients need to avoid multi-vitamins."

 

http://www.gilbertssyndrome.com/allergies.php

 

Also, this:

"Incidence of allergies in the world have been on the rise for decades, as are symptoms that are likely related to the neurological effects of high histamine levels - depression, ADHD, OCD, and several others. Use of antidepressants is rising, as well, and it is likely much of this is a result of the rising allergy levels and lack of awareness or treatment for the emotional/behavioral H3 receptor reactions that go along with it. These problems are prevalent enough to be shaping society, and have produced a new stereotype.

 

Look again at the symptoms of high histamine levels: excess mucus, excess saliva, excess perspiration, frequent colds, phobias, being highly motivated, compulsive working, perfectionist, good creativity and imagination, strong sexual desire, joint pain, runny nose, depression, headaches, muscle pain, poor pain tolerance, slender fingers and toes, hyperactivity, and social isolation.

 

Are you starting to get the picture? Have you known anyone who fits this description? Physically, this person is thin with bony fingers. He is sniffling, sweaty, often sick, and more often than not male. He is competitive, motivated, hard-working perfectionist, who excels at school. His headaches, allergies, low pain threshhold, and joint pain make him uninterested in sports and physical activity. He is creative and enjoys fantasy such as video games, comics, or role playing games. Yet his fears, depression, hyperactivity, and OCD behavior make him antisocial. He has a high sex drive but is too awkward to form relationships.

 

You probably know several people like this. People with these characteristics are called nerds, dweebs, and geeks in high school. They are awkward, unpopular, and not physically active, but really smart and good at difficult but logical subjects.

 

During my first allergy episode, I went from a fairly popular class clown to someone who had difficulties in social situations. I became obsessed with a video game and played it ceaselessly. After the years of allergy shots I became much more social and outgoing again. And now, in this new, far worse allergic crisis, the same has happened again. In the last few years I have found myself shying from social engagements because it's hard to interact with people, and I am obsessed with a new video game."

 

AND:

 

"Folic Acid (Vitamin B9) & Vitamin B12

 

http://www.patrickholford.com/content.asp?id_Content=1026

 

* Check your histamine status. If high don't take large amounts of folic acid or B12

 

Histamine imbalances are another biochemical twist in the tale of schizophrenia. We all make histamine, but some more than others. Some people produce excessively large amounts of histamine and are called 'histadelics'. High histamine levels in these people can lead to compulsive and obsessive behaviour and pits of depression... Since Folic acid and B12 stimulate the production of histamine, these supplements... should be avoided by those with a high histamine status.

 

http://www.diagnose-me.com/cond/C447056.html

 

Histadelics should avoid supplemental folic acid as it can produce excess histamine. In fact, anti-folate drugs may be required. Folic acid increases depression in histadelic patients and a trial of folic acid could be used to distinguish between histapenics and histadelics. In extreme cases, folic acid in food or in multivitamins is enough to produce the adverse effects."

---------------------

I'm assuming that when they say to avoid folic acid, they are not referencing, and probably are not aware of the methylfolate that is better able to be utilized. The writer may be referring to the folic acid found in most supplements...

 

LOTS of things coming together for me with all of this.....Lots of loops back to MTHFR, methylation pathways and histamine. MTHFR test is very high on my list now.

Edited April 12, 2012 by fightingmom

[fightingmom]

Thanks fightingmom. There is definite benefit to addressing high histamine.

 

Here is an article from Dr. Mercola's website on how allergies increase histamine which in turn increases nitric oxide (at high levels) which in turn has the capcity to kill neurons and cause problems in the central nervous system. Therefore, addressing histamine can help mitigate this vicious cycle.

 

http://articles.mercola.com/sites/articles/archive/2000/03/12/reducing-nitric-oxide.aspx

 

 

 

 

I haven't opened this link yet, but just read through something that referenced the exact same earlier. Yes, it is all a vicious cycle, but it's slowly starting to make a lot of sense to me.

Edited April 9, 2012 by fightingmom

[fightingmom]

This is a much easier read. There are many entries on the left hand side in order, if you want to read more:

 

http://naturalhealingforbipolardisorder.blogspot.com/2012/02/histadelia-and-methylation-part-ib-what.html

[LNN]

Regarding the advice that histadelics should avoid folate and B12...I too wonder if this is a blanket statement and comes from data/anecdotes collected before MTHFR research. If histadelics were found to be a group that predominantly has the MTHFR mutations, then this advice would make total sense to me. But rather than avoid folate, I'd argue that you should actually supplement - just using methylfolate rather than folate. Because most likely, you do have an excess of folate, because you're not "metabolizing" it, which results in excess histamine, no? So if you supplement with methylfolate, slowly building up, you'd be draining away the excess folate and reducing histamine, right? Or am I missing something?

 

If excess folate/B12 means a blockage, then the rest of the methylation cycle will also eventually be inefficient, creating shortages elsewhere. The thing that makes MTHFR important is that it sits at a fork in the road - you not only need methylfolate to fuel the methylation cycle and energy, but you also need more methylfolate to travel down the other fork in the road and convert homocystine into (eventually) glutathione and down the trans-sulfuration pathway (detox). (talking about cycles 3 & 4 in this diagram) http://www.heartfixer.com/AMRI-Nutrigenomics.htm

 

Some of the quotes above suggest doing a trial of folic acid and if you get adverse effects - that's proof you're a histadelic. I'd say it's "proof" you have an MTHFR mutation and need to be supplementing with methylfolate instead of folic acid, not proof that you shouldn't supplement at all.

 

IDK - but I'll be supplementing DD with 250mcg of methylfolate (smallest dose I could find) as soon as the mail comes. Yasko predicts a short honeymoon followed by "adverse" response, which she says is a good thing - the cycle being replenished and starting to dump junk out of the system that's previously been gumming things up. The 'ol get worse before you get better song. We'll see...

[fightingmom]

Regarding the advice that histadelics should avoid folate and B12...I too wonder if this is a blanket statement and comes from data/anecdotes collected before MTHFR research. If histadelics were found to be a group that predominantly has the MTHFR mutations, then this advice would make total sense to me. But rather than avoid folate, I'd argue that you should actually supplement - just using methylfolate rather than folate. Because most likely, you do have an excess of folate, because you're not "metabolizing" it, which results in excess histamine, no? So if you supplement with methylfolate, slowly building up, you'd be draining away the excess folate and reducing histamine, right? Or am I missing something?

 

If excess folate/B12 means a blockage, then the rest of the methylation cycle will also eventually be inefficient, creating shortages elsewhere. The thing that makes MTHFR important is that it sits at a fork in the road - you not only need methylfolate to fuel the methylation cycle and energy, but you also need more methylfolate to travel down the other fork in the road and convert homocystine into (eventually) glutathione and down the trans-sulfuration pathway (detox). (talking about cycles 3 & 4 in this diagram) http://www.heartfixer.com/AMRI-Nutrigenomics.htm

 

Some of the quotes above suggest doing a trial of folic acid and if you get adverse effects - that's proof you're a histadelic. I'd say it's "proof" you have an MTHFR mutation and need to be supplementing with methylfolate instead of folic acid, not proof that you shouldn't supplement at all.

 

IDK - but I'll be supplementing DD with 250mcg of methylfolate (smallest dose I could find) as soon as the mail comes. Yasko predicts a short honeymoon followed by "adverse" response, which she says is a good thing - the cycle being replenished and starting to dump junk out of the system that's previously been gumming things up. The 'ol get worse before you get better song. We'll see...

 

 

You and I are on the same page with this stuff, and I agree with your reasoning. I am going to request testing from Dr. B. this Thursday and no matter what he is able to do/or not do, I'll be headed down the path of reducing histamine and getting this pathway in balance as well. I feel that this completely makes sense and could truly be the root of all these issues. This cycle regulates nearly every function in the body in some degree - including the ability to fight infections - and links to a permeability in the BBB. So, it makes perfect sense that the MTHFR gene and methylation pathways would be an issue for PANDAS/PANS kids or people with any type of chronic immune issues or illness for that matter. Any blip in it could cause a serious domino effect of issues. I keep picking up pieces of the puzzle and the significant reduction of symptoms in my son from ibuprofen or pepcid to me is a MAJOR key in unraveling all of this. I'm no longer going to allow doctors to shrug me off when I tell them Advil reduces his symptoms. I can't tell you how many times I have sat in front of doctors and said in these words "I noticed that in extreme episodes I can give him Advil and in a short period of time he is completely calmed down. There seems to be a major inflammation component to all of this." I just said this to a psych at the children's hospital last week (my son is participating in an MRI study for them) and the guy looked at me gave me a half-###### shrug of the shoulders and moved on to his next question. Completely ignored, AGAIN!!

 

That's fine, I'm keeping a list, and when my kid is well, I'm sending them every study I have from pandas/pans, lyme, methylation, heavy metals, etc. and a nice long letter. And, I'm telling you, if it takes until my dying day, I'm going to figure this out and I will get him better.

 

Oh, Yasko mentioned in a short video clip I watched the other day something about giving 1/4 of a methylfolate pill. Now, I don't know how many mg's the pill was that she was talking about quartering - perhaps if you see what the dosage is of the products she offers it will give an idea?

Edited April 10, 2012 by fightingmom

[Kimflow]

Fighting Mom,

 

You have given me alot to think about as I too am going to die trying to figure all this out for my son.

 

Okay, so I have to tell you that when I took him in to the doctor to rule out strep, if it wasn't strep, my next option was going to be try Ketotifen (second-generation H 1 - antihistamine and mast cell stabilizer). So many autism moms have seen good results with this. Hard to get though apparently.

 

Then I see how you wrote that it is the H2 blockers that would work theoretically for our PANDAS kids maybe. That prompted me to remember way back in the early days of learning my son had autism, I remembered that at 2 months, he took Zantac to relieve successfully colic. I always blamed myself for this because although it allowed him adn me to sleep finally still upright in a carseat, I later read that prolonged use of H2 blockers prevent B12 absorption and when I got on the DAN track to help the autism, it was commonly known that kids has many nutritional deficiencies and B12 was one of them. IN fact, we supplement B12 subc. for years. NO noticeable effects but many mothers got children who started talking. I realize this is contradictory about high folate/don't supplement B12 you wrote in your post.

 

Anyhow, I guess the gist of what I am trying to say is that too have felt the histamine have played a piece. I also thought it was very interesting the part you wrote about high histamine and the blood brain barrier permeability.

 

I am going to go back and reread all these posts and links.

 

Thank you,

Kim

[fightingmom]

I'm headed into a class, but wanted you to know that it's not contradictory. The post you are referencing I copied from online and I'm fairly certain that the person that wrote it an many others are referring to the types of folic acid and b12 that not really bio available but are what's available in most supplements. The key seems to be the methylated forms and getting the pathway in balance so it can be used correctly.

[Kimflow]

ahh, that makes sense....

 

Well, I just wanted to let you know that I admire the depth of your posts. As for me, 8 years of fighting autism have left me brainfogged from stress and PANDAS is "limiting visibility to almost 0 right now". :-) I need a lighthouse.

 

Like I said, I am going to dig deeper into your links on this. Thanks for posting them. Interestingly enough, along with all the immune labs and strep titers. they stuck a histamine level in there too. That will be interesting to see what that comes back as way back when, he was identified as an undermethylator/high histamine kid. that was back during Pfeiffer protocol which is alot like DAN but they had some MT protocol. Bottom line is the only things that have ever helped my son's autism have been immunomodulatory.

 

Kim

[LNN]

Oh, Yasko mentioned in a short video clip I watched the other day something about giving 1/4 of a methylfolate pill. Now, I don't know how many mg's the pill was that she was talking about quartering - perhaps if you see what the dosage is of the products she offers it will give an idea?

Her product is called Folapro and it contains 800mcg of methylfolate. I just ordered the pill for myself (for many reasons, I believe DD's mutation comes from me). I wasn't sure how well the pill could be quartered, so I ordered the liquid version for my DD so we can start at one drop/day. This will be about 250mcg - just a little over what a quarter pill would be. And we will build from there.

 

In Dec/Jan when we started down this path, I bought Thorne's methylfolate in a 1g capsule and split the capsule between us. But it was hard to be accurate and it still meant starting out at 500mcg which is higher than I want. She was edgy from this but we had other stuff going on (high copper, EBV) and it couldn't tease out cause/effect. Now that she is in a much better place, I can stir the pot and know that only one thing will have changed and I hope to make this a better science experiment than the last one.

 

Kim - FWIW - both my kids had wicked, evil colic. My DD especially, who continued to have GI issues, GERD, histamine...and is MTHFR C677T heterozygous. Like Fightingmom, I think her secret is tied up in clearing up her methylation imbalances, which may include additional blockages but I'm going to start with methylfolate and go from there. Try no to blame yourself. I too gave "baby zantac" to get relief from a cry that could shatter crystal and didn't stop for 23 hrs/day. The zantac never helped us, but sleep sure did. If you want to place blame, it should be on a medical system that gives doctors only a few hours of training on this stuff in all their years of school and residency.

 

FightingMom - agree with you that for some, various mutations in genes that play a role in methylation/trans-sulfuration/krebs cycles could be key. But will also say that my son, who is way more "classic" Pandas has no MTHFR mutation. His puzzle piece was with zinc/B6. So it won't be a one-size-fits-all answer. But the implications that many kids could find their puzzle pieces somewhere in these four circles in the diagram still blows me away, even months after my AHA moment (ok, it was an expletive, not AHA, but you get the idea).

 

When you're done digesting Yasko, look up Rich Van Konynenberg, who takes Yasko's ideas into the CFS world.

[fightingmom]

LLM, thanks for putting that out there. I certainly don't mean to imply that this is a one size fits all thing or that everyone with PANDAS/PANS has a MTHFR mutation. Truth be told, I feel as this may actually wind up taking us down a new road down the line, but I'm not there yet and don't have any reason to start traveling.

 

With or without the MTHFR mutation, wouldn't the zinc/B6 deficiency be along a similar train of thought though? That a hiccup somewhere along the way is causing a deficiency o some sort, or in some cases an abundance of certain minerals, nutrients, or even toxins, etc that in effect alters the body to produce or maintain adequate amounts of neurotransmitters, (or it's ability to utilize them correctly)??

 

I'm on a 10 min break and typing from my phone, so just thinking off the top of my head.

 

I was always that kid that had to know the "why?" behind everything. I have this innate need to comprehend the reason behind things, the science behind it all, so I ask a lot of questions and try to put the links together. So, I apologize if me asking seems like I am doubting anything anyone is saying - I'm not. I'm simply trying to make sense of it all.

Edited April 10, 2012 by fightingmom

[LNN]

Totally agree with you - I do think my son's zinc/B6 et al deficiencies play a huge role in his particular story and probably laid the ground work for Pandas. I think back to those "something's not quite right" moments in toddlerhood and think it was the pyroluria driving it all - long before strep or even infections. Also agree that for other kids, it could be histamine, toxins, etc. I only put my comment out there so it doesn't sound like we're saying there's no Pandas, no autoimmunity or that it can all be "cured". Sometimes when I've gone hot and heavy on this topic, I think I come across as if I think it's methylation instead of Pandas and I just wanted to be clear that that isn't the case. Just that for my son, "methylation" in the broadest, loosest sense of the word was a precursor and for my daughter, I think it's the whole enchilada.

 

I too needed to know "why" and if someone couldn't tell me "why" I needed calculus, I really struggled to learn it. But if someone could've made chemistry come alive for me back in high school, all this would be so much easier for me now.

[fightingmom]

Totally agree with you - I do think my son's zinc/B6 et al deficiencies play a huge role in his particular story and probably laid the ground work for Pandas. I think back to those "something's not quite right" moments in toddlerhood and think it was the pyroluria driving it all - long before strep or even infections. Also agree that for other kids, it could be histamine, toxins, etc. I only put my comment out there so it doesn't sound like we're saying there's no Pandas, no autoimmunity or that it can all be "cured". Sometimes when I've gone hot and heavy on this topic, I think I come across as if I think it's methylation instead of Pandas and I just wanted to be clear that that isn't the case. Just that for my son, "methylation" in the broadest, loosest sense of the word was a precursor and for my daughter, I think it's the whole enchilada.

 

I too needed to know "why" and if someone couldn't tell me "why" I needed calculus, I really struggled to learn it. But if someone could've made chemistry come alive for me back in high school, all this would be so much easier for me now.

 

Oh yes, I certainly don't want to cause a stir of emotions or imply that it's not PANDAS/PANS -- or project my thoughts in a way that suggests that. When dealing with an illness that is so greatly dismissed and misunderstood as it is - that's the last thing anyone here needs. So, thanks for making it clear that this was not the intent!

 

Mostly, I am thinking out loud, I suppose. Two sentences of yours above that I put in bold, are exactly where my thought process is going. When my son's aunt was initially explaining PANDAS to me (because my son's two cousins were diagnosed over the past few years) and she was telling me about the basal ganglia and the BBB, etc. -- I remember clear as day saying to her, "Well, can't you strengthen the blood brain barrier?" - and she told me there was "no way" to do that. Hmm, really? No way? Well, why not? What's causing it in the first place? There HAS to be a way, there has to be an explanation for all of this at a biochemical level, there just has to. That's where my head is.

 

So, no way, no how am I trying "diss" PANS! This is first time EVER my son's illness is finally being taken seriously -- my kid has serious exacerbations when he is sick, he has recurring infections, his behavior has curbed when on antibiotics, ibuprofen and recently prednisone. And, I'm suspecting Pepcid and even vitamin C. Something is making our kids predisposed to PANDAS/PANS. So, now I'm saying, why? What's the link? And, what the h*ll has compromised my son's immune system so badly, and what's the cause of this inflammatory response that responds to advil and prednisone? Whaat causes this breach in the BBB? I feel like if I can work my way back to the "why" I have a much better shot at finding a lasting solution.

 

Does that make sense?

Edited April 10, 2012 by fightingmom

[beeskneesmommy]

WOW!! You guys sound like you are on to something great here! My little guy is just 5 - wonder what the Pepsid dose is for him, a 45 pounder?? SO exciting when cool, rockin' moms on a mission uncover something like this!

[LNN]

WOW!! You guys sound like you are on to something great here! My little guy is just 5 - wonder what the Pepsid dose is for him, a 45 pounder?? SO exciting when cool, rockin' moms on a mission uncover something like this!

My DD was just shy of 6 when she started on pepcid. Doc had her at 20mg for her GERD (she was 40? pounds when soaking wet) but you can start with 10mg and see if that's enough.

[Fixit]

Totally agree with you - I do think my son's zinc/B6 et al deficiencies play a huge role in his particular story and probably laid the ground work for Pandas. I think back to those "something's not quite right" moments in toddlerhood and think it was the pyroluria driving it all - long before strep or even infections. Also agree that for other kids, it could be histamine, toxins, etc. I only put my comment out there so it doesn't sound like we're saying there's no Pandas, no autoimmunity or that it can all be "cured". Sometimes when I've gone hot and heavy on this topic, I think I come across as if I think it's methylation instead of Pandas and I just wanted to be clear that that isn't the case. Just that for my son, "methylation" in the broadest, loosest sense of the word was a precursor and for my daughter, I think it's the whole enchilada.

 

I too needed to know "why" and if someone couldn't tell me "why" I needed calculus, I really struggled to learn it. But if someone could've made chemistry come alive for me back in high school, all this would be so much easier for me now.

 

Oh yes, I certainly don't want to cause a stir of emotions or imply that it's not PANDAS/PANS -- or project my thoughts in a way that suggests that. When dealing with an illness that is so greatly dismissed and misunderstood as it is - that's the last thing anyone here needs. So, thanks for making it clear that this was not the intent!

 

Mostly, I am thinking out loud, I suppose. Two sentences of yours above that I put in bold, are exactly where my thought process is going. When my son's aunt was initially explaining PANDAS to me (because my son's two cousins were diagnosed over the past few years) and she was telling me about the basal ganglia and the BBB, etc. -- I remember clear as day saying to her, "Well, can't you strengthen the blood brain barrier?" - and she told me there was "no way" to do that. Hmm, really? No way? Well, why not? What's causing it in the first place? There HAS to be a way, there has to be an explanation for all of this at a biochemical level, there just has to. That's where my head is.

 

So, no way, no how am I trying "diss" PANS! This is first time EVER my son's illness is finally being taken seriously -- my kid has serious exacerbations when he is sick, he has recurring infections, his behavior has curbed when on antibiotics, ibuprofen and recently prednisone. And, I'm suspecting Pepcid and even vitamin C. Something is making our kids predisposed to PANDAS/PANS. So, now I'm saying, why? What's the link? And, what the h*ll has compromised my son's immune system so badly, and what's the cause of this inflammatory response that responds to advil and prednisone? Whaat causes this breach in the BBB? I feel like if I can work my way back to the "why" I have a much better shot at finding a lasting solution.

 

Does that make sense?

 

I'm getting confused with the thread. some are saying the want to try pepcid. yet you are saying that it might be the cause, as well as vit c? ds12 never had gut issues to use the stuff before, but we started tagament a few months ago and i saw an improvement. my son also has TERRIBLE seasonal allergies. so i think i'm getting some anti inflam properties from it..

 

it's been rough here and my brain is fried. pepcid bad? vit c bad? in tired mom, easy to understand words please.