Is methylation without a doctor impractical?

[Bluebell]

yes, my brain just probably did not process correctly, thx. I thought the risk one was A.

Roxie60, the riskier one is A! The safer one is G. That's what Genetic Genie and Thane show in their charts, that's what I've been saying.

Do you feel that there is a contradiction somewhere? I think you are just a little confused somewhere, and we just need to uncover that aspect and then it will make more sense to you.

 

[roxie60]

Just brain tired

 

[frchli]

Nila, I realized in retrospect that I'd gotten into overmethylation, twice. Once from too much methylB12, the other from too much folate. In each case I'd raised one without the other. And in both cases I had histamine response, which is one of my ongoing symptoms. These involved rash on my scalp and heavy hair loss. Here are a few links to issues from Freddd's Protocol. His posts can be very dense, I've had to reread them countless times, but that's where I've found my support and answers. The 4 components of his Deadlock Quartet have proven essential for me to improve.

THE COMPLETE METHYLATION REVIEW Fredd Feb 2013 [very long and involved]
http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/

http://forums.phoenixrising.me/inde...t-hole-insufficiency.22614/page-2#post-345537

http://forums.phoenixrising.me/inde...kalemia-and-methylfolate-insufficiency.22968/ [re B vits, K+...]

http://forums.phoenixrising.me/inde...e-anger-or-agitation.15837/page-3#post-352974

@ahmo, what did you do when you got overmethylated/a histamine response?

I started the Freddd protocol 1.5 weeks ago on Saturday. For the first couple of days I felt good: increased energy, decreased MCS but not nervous/anxious/ADD-like like I do when I have a mast cell/histamine response. (This can be very severe with me as I have a diagnosed Mastocytosis by biopsy.) However, I had huge issues with mucus/sinus issues/felt like I had a massive cold which I haven't had in years.

I took tiny crumbs of B Complex by pure encapsulations at the time plus around 50 mcg MB12 plus increased my Mfolate dosage from 3 times 400 mcg to 4 times 800 mcg during that time. I got increasing histamine/mastocytosis symptoms during that time. For me, that is migraine-like headaches, light intolerance, ravenous appetite, racing heart, excess saliva, lump in throat/swollen throat, nasal congestion and massive edema (like I told you in another thread, I'd gained 6 kg of water(?) within the first week), nervousness, ADD-like behaviour, whiney etc. which all responds to H1 antihistamine (Desloratadine) medication.
I have now stopped supplements completely (last MFolate the night before last night) because it just got too out of control and I didn't know what else to do as I can't tolerate Niacin well for stopping it (I flush in seconds). However, I am still so overmethylating/having such a large mast cell degranulation that I am on my antihistamine medication constantly to make it bearable.

So I'm wondering how to stop this overmethylation madness?!

What I do notice, however, is that even the past few days of methylation have made SUCH a big difference:
For instance,

• my digestion has improved/when I've got gas in my large intestine, I don't feel completely liver-toxic (like THE worst hangover ever, cannot speak properly, fall asleep randomly) anymore
• felt more stable, at least in the first few days: physical activity was way less exhausting
• in a good/stable mood (until the massive histamine response came up), great mental clarity (since histamine response: over-alert/anxious)
• MCV went from 110 to 90 =)
• No raised eosinophiles/basophiles for the first time in 2 yrs (STRANGE, always assumed this was a sign of my mastocytosis but then !!)

So I think methylation is something for me/my issue but I am wondering how to find a balance? I'm 26 and I live on my own in Germany and it was really scary to bear all the overmethylation symptoms without any advice apart from this WONDERFUL(!) forum around... from reading around I thought that maybe the AdenoB12+Mfolate would be a suitable as the functions of AdenoB12 are, according to Freddd:

1. mitochondria at the heart of ATP production

2. processing fatty acids for myelin generation for healing nerves

3. anti-inflammatory: with zinc it a complete fix for the inflammation and NO with no nasty leftovers like HyCbl leaves behind.

So it's not really involved in methylation if I get this right. But then, without the MB12, that's not really Freddd's protocol anymore, who suggests

I suggest establishing Methylation startup with 100+ mcg of MeCbl and AdoCbl absorbed each (at least, since the effect is NOT linear, 80% of all the body healing that can turn on does with a couple of hundred absorbed mixed active B12s. One ENZY tablet and part of an Anabol Dibencoplex capsule along the lip and gum for 1-2 hours is quite sufficient until potassium and L-methylfolate are titrated to full need at that level, then tolerate the LCF.

So I am wondering if anyone has tried this? Or are there any reasons not to try this? I.e. titrate up to 100 mcg AdenoB12 and some Mfolate (the question being how much as this would not really be Freddd's protocol anymore and other protocols seem to be going for something like 200 mcg rather than loads, hm!)? I also have LCF and SAMe sitting about, which I have not come around to try yet, and Potassium.

It's just that I completely voerreact to MB12 and B-Complex each time I take it...

Also, coming back to the topic of this thread (oopsie!), since I have been alone with this (for more information see http://forums.phoenixrising.me/inde...ol-vs-lab-results-vs-systemic-response.39156/ ), an American family friend wants to support me.

So I am looking for an experienced practitioner who works with international clients (Germany) over skype, who is very familiar with methylation/gut issues and histamine/mast cell involvement, plus lab tests that can give me additional insight on what I need. I already have done gut dysbiosis testing (bad result with mainly just Clostridum Spp. in there but I have been working on that and feel that if I leave out any protein/sulfur containing food i.e. stick to a diet of cooked sweet potato, carrots, oils, pumpkins and squashes, asparagus, and, when I am not on a methylation protocol, lettuce, fennel, courgettes [I know vege has some protein in it but I am ok on it], I don't get endotoxic bloating=>liver symptoms and inflammation plus I go to the toilet nice and regularly plus manage to gain weight), and the 23andme test as can be seen in the thread above.

I was thinking of doing the Nutreval test and then I was going to have a look at the links you, @caledonia, suggested here

If you feel like you need a doc to help manage things, you can try one of the docs at MTHFRsupport.com. Dr. Jess Armine, Sean Bean (nutritionist, not doc, but supposed to be very knowledgeable), Dr. Tim Jackson and few others do phone or Skype consults. The rate is something like $250 per hour, which will, of course, vary by practitioner.

http://www.mthfrsupport.com/practitioner-2/united-state/
http://www.mthfrsupport.com/pennsylvania/
http://www.mthfrsupport.com/south-carolina/

As the links aren't working, I was wondering whether these are just the links to Dr. Jess Armine, Sean Bean (nutritionist, not doc, but supposed to be very knowledgeable), Dr. Tim Jackson , respectively?

It'd be SO nice to have someone guide me through this and I am happy to pay for it. So please let me know any suggestions you have for my case — both tests and practitioners that work via skype!

Thanks a LOT for sharing your knowledge on this!!

Best wishes and, most importantly, much health and patience to all of you,
Frchli

 

[caledonia]

@frchli
How much niacin are you taking? The amount to slow overmethylation is 50-100mg, not a whole pill (500mg or whatever). So like 1/8 of one pill.

If that's not tolerated, you could also take curcumin or some other things.

Ben Lynch has two great articles on stopping and preventing Methylfolate Side Effects -

http://mthfr.net/methylfolate-side-effects/2012/03/01/
http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/

=-=-=--=

Adenosylcobalamin doesn't contain methyl groups, therefore it is not a substitute for methylcobalamin. Hydroxycobalamin converts into both methylcobalamin and adenosylcobalamin, therefore that can be substituted.

-=-=-=-=-=-

It looks like the links have changed for practitioners.

Try these:

MTHFRsupport
https://mthfrsupport.com/find-a-practitioner/

Ben Lynch (the practitioners listed have taken at least one of his courses)
http://mthfr.net/mthfr-resources/

 

[ahmo]

what did you do when you got overmethylated/a histamine response?

Instead of using niacin, I always had excellent results by taking a 1mg MB12. I could put one into my cheek and go to sleep. amazing.

However, I had huge issues with mucus/sinus issues/felt like I had a massive cold which I haven't had in years.

This sounds very much like over-methylation.

increased my Mfolate dosage from 3 times 400 mcg to 4 times 800 mcg during that time. I got increasing histamine/mastocytosis symptoms during that time

To me, this looks like where your problem is. Way too fast increase. Fred suggested increasing folate 100-200 mcg every day or 2 if tolerated.

What I do notice, however, is that even the past few days of methylation have made SUCH a big difference:

I'm 26 and I live on my own in Germany and it was really scary to bear all the overmethylation symptoms without any advice apart from this WONDERFUL(!) forum around..

from reading around I thought that maybe the AdenoB12+Mfolate would be a suitable as the functions of AdenoB12.

...So it's not really involved in methylation if I get this right. But then, without the MB12, that's not really Freddd's protocol anymore, who suggests

I think Caledonia has answered this, and you answered it yourself. Fred's most recent recommendations is that he found better absorption by taking the AdB12 once a week, on a day without MB12, 30-50mg. I've been doing this, 40mg. I don't know how others are taking AdB12.

It's just that I completely voerreact to MB12 and B-Complex each time I take it..

You can take crumbs or the B Comp. Or, maybe it's not the right time for you. Maybe you need to stabilize the folate/B12 first.

 

[frchli]

@caledonia and @ahmo,

Thank you so much for sharing your experience! Sorry it is taking me a while to reply (— I've not been well at all).

How much niacin are you taking? The amount to slow overmethylation is 50-100mg, not a whole pill (500mg or whatever). So like 1/8 of one pill.

I often flush from even just a crumb of a pure encaps. B-Complex containing Niacinamid (Vit. B3) 100 mg / Inositol Hexaniacinat (Vit. B3) 10 mg. So I never actually bought single Niacin capsules because I figured it disagrees with me.

If that's not tolerated, you could also take curcumin or some other things.

I bought these super pure expensive organic *whatnot* curcumin capsules once to calm down the reoccurring intestinal inflammation. WORST IDEA EVER since it made me super itchy, sneezy and, most ironically, I had huge intestinal inflammation from it... ooops! Donated them to a friend
Thanks for the links though! I'm sure I had/have electrolyte imbalances, especially reading the symptoms (other than muscle cramps) of it just there...

Adenosylcobalamin doesn't contain methyl groups, therefore it is not a substitute for methylcobalamin. Hydroxycobalamin converts into both methylcobalamin and adenosylcobalamin, therefore that can be substituted.

That's why I thought I could maybe support my mitochondria/get B12 benefits without increasing methlyation too much... but then that'd probably get me into methyl trapping if I still use MFolate I guess?!

@caledonia, I have an appointment with Dr. Jess Armine on the 23rd, which I am looking forward to greatly.

That's also (partly) the reason I thought to myself: "I'll just quit taking all supplements (apart from high dose Vit C+Quercetin for mast cell stabilisation and my daily 2*400mcg Vit D for osteopenia) until that appointment so that my lab results will be nice and unbiased." Would be a bit pointless to do a methylation panel when overmethylating from supplements, I thought... and it seems to take time for me to come back down:

The last time I needed an anti-histamine was the day before yesterday. I REALLY feel like I'm fighting something off though: I am up all night, bloated, was sooo clogged up for 1.5 weeks and still am a bit but also, as of last night, I have come up with this crazy throat ache (worse when swallowing) and super red tonsils and just general feverish feeling. I haven't had anything like this since the "BIG CRASH" 3 years ago. Apart from the last time I took like 100 mcg MB12 for about 4 days and good a really bloody (!) sinus infection... Something is definitely happening but I am not sure whether it's a good thing. Also got really hardened lymph nodes on my chest and feel super weak.

From what my body is coming up with (the last time I took any mfolate was 5 days ago), do you reckon it was a mistake to stop the methylation protocol abruptly altogether due to the scary overmethylation/histamine response? I just got really scared (I'm supposed to watch my mast cells due to my mastocytosis and they were definitely going nuts...) from the massive response I had and didn't know what else to do...

And therefore, @ahmo,

To me, this looks like where your problem is. Way too fast increase. Fred suggested increasing folate 100-200 mcg every day or 2 if tolerated.

Thanks. Yes! That'd probably be right then. I wasn't really aware as when I was getting the symptoms (nasal congestion, swollen lump in throat, histamine reaction) and was looking around the forum for support with Freddd's protocol, the most common explanation I found (and assumed was the explanation for my situation) was that I was in methyl trap/ needed to up my MFolate. So I did and each time I took my 800mcg mfolate it at least *seemed* that the clogged up feeling got more tolerable. So I thought I was ding the right thing... huh, this is confusing! Would still not know what else to do if it happened again...

Therefore, I should maybe wait until I see Dr. Armine (via Skype) and start over then with some support. From your experience, do you think a tonsillitis-like immune response like I am having now can just be left like this (bed rest, plenty of fluids, vit C, salt water/grapefruit seed extract gargelling) or would I need to watch out for anything? Maybe it is even a good thing that I'm having an immune response like this? I thought, maybe my immune system is just waking up and re-training?!

You can take crumbs or the B Comp. Or, maybe it's not the right time for you. Maybe you need to stabilize the folate/B12 first.

Cool, I thought I'd *need* to take B Complex in order to not ruin my body etc. but I'd be very happy to leave it out in the future

Instead of using niacin, I always had excellent results by taking a 1mg MB12. I could put one into my cheek and go to sleep. amazing.

That again shows me that everyone of us is SO different and we need to find our own little tricks on the end: when I take even just 50 mcg MB12, I get the worst immune/mucus/sinusitis responses so 1000 mcg sounds super scary to me! =P

Thank you so much again!

frchli

 

[caledonia]

@frchli

Yes, I think the best thing is to discontinue everything that's making you worse until you get back to baseline and have your appointment with Dr. Armine.

I always tell people to Start Low and Go Slow (in fact I've written a whole document with tips on how to do this - see my signature link). Use crumbs if you have to and gradually work up over a long period of time. We are so debilitated, it's too easy to make ourselves worse, so it's always best to err on the side of caution.

 

[frchli]

@caledonia, thanks SO much for your advice on this, really. Just the fact that you are giving me some kind of feedback on what I'm doing here is making me feel so much better — let alone that I think it is very knowledgeable feedback...

Dankeschön from Germany!

 

[ahmo]

From your experience, do you think a tonsillitis-like immune response like I am having now can just be left like this (

I don't know.

 

[Johnmac]

I've treated methylation with some (not complete, so far) success without medical help.

I've done the 23&me test, but that's it. And it wasn't a fraction as useful as the advice I've received on this forum.