MTHFR and Pyroluria Adventure Part 10 - Learnings From the MTHFR Support Info Night

What I learnt at the MTHFR Support info night. [Disclaimer: it is possible I've made errors in my explanations here, do let me know if you know better. I'm doing my best to remember what I learnt but I'm still just getting my head around all this):

1) Vitamin B12 plays a crucial role in the methylation cycle. If one has a MTHFR mutation and so is supplementing with methyl donor supplements like I am (I take methionine) but isn't able to absorb vitamin B12 from food properly due to low stomach acid, or is taking a not very bioavailable form of supplemental B12 (which for many people is any form of swallowed B12 supplement) then one can end up with a build up of methyl-groups, which is bad news. I know I have low stomach acid and that I do best taking a sublingual B12 supplement (that absorbs under the tongue, not swallowed), however since starting on my fancy MTHFR supplementation which includes B12 in a capsule, I stopped taking my sublingual B12. After considering the above I decided to take a sublingual B12 after the info night and see if I noticed a difference. Well, I slept amazingly well and felt incredible the next morning, the most normal/with-it/functional I've felt in ages. Thinking that means I haven't been absorbing vitamin B12 from my (bloody expensive) supplements and have been getting a build up of methyl groups as a result.

2) 'Tiger stripes' like my burn-like marks are not a sign of heavy metal detoxification like my doctor said, but are a sign of over-methylation, ie not being able to use methyl groups properly, leading to a build up in the body. Since I was diagnosed as a severe undermethylator it would seem that the supplements I've been taking have successfully addressed that issue with their donating of methyl groups and have done such a good job that I've now been pushed to the other extreme (just like the shaman said)! Lol. A new problem, but not one that can't be fixed by just cutting back on the supps and making sure that ALL parts of the methylation cycle are being addressed (so that includes taking sublingual B12, not just the B12 in my capsules).

3) Folate (vitamin B9) is also super important in the methylation cycle. I presumed I was getting my folate from green leafy veggies. What I had forgotten was that folate is heat sensitive, and that my prefered way of eating green leafy veggies since my digestion broke down (due to the Doxycycline episode), ie soupy and soggy, ain't going to be giving me much folate! No wonder I'd start to feel exhausted after a couple of days of no salad or lightly steamed veggies, and that I'd feel remarkably better after making myself green juices .Lol. Oh I feel silly. Oh well, much great learning!

Gene Testing, MTHFR Support Australia, and Gut Pro

Going the whole hog. Doing the 23andme thing and getting my entire DNA analysed. Is there such a thing as too much information?? I think so. Still, it doesn't seem to be stopping me!

In other news I went to one of MTHFR Support Australia's information nights last night. Despite being clever marketing on their part, it was excellent. A lot of stuff I already knew, but I did hear some key things that I hadn't previously considered as well as some very interesting feedback on my weird spontaneously appearing burn marks. Will post more over the next few days.

Also, did I mention I was thinking of trying GutPro; a pretty hard-core probiotic? It arrived today and I started with with a very small (1/64th tsp) dose. I am now hoping that my body won't explode as billions of new bacteria engage in microbial warfare with my current bacterial residents; their ultimate plan being to recolonise my digestive tract with their own species. Good for them! And that, apparently, is one of the things that sets GutPro apart from other probiotics. Most probiotics are (I have been told, but should do more research) only of benefit as they pass through your digestive tract; helping you to digest this something over here, killing off that something unwanted over there, until their journey through you comes to an end. GutPro on the other hand, apparently, actually helps to recolonise your digestive tract. So they actively kill off the 'bad guys', stake their claim and start having having babies. What with my numerous affairs with intravenous antibiotics over the years and recent fling with Doxycycline, I figured a bit of recolonisation might be what I need.

So I took that first dose about 45 mins ago. Now I feel distinctively fluffy in the head and my jaw muscles have become oddly tense. I'm not too worried, side-effects are normal as the war on unwelcome microbial squatters begins, as when bacteria die they release chemical compounds which have an effect on your body, this is often referred to as 'die-off'. However there is also the risk of your body just not tolerating the new bacteria so one needs to pay attention. Will keep you posted.

If you're interested in trying Gut Pro, the amazing Kitsa of Kitsa's Kitchen is the Australian distributor. It might seem expensive at $130 but it's powerful stuff and you use teeeny tiny amounts. And those measuring spoons might also seems expensive at $10 but you really need something that can accurately measure those teeny amounts. And they're cute-as with their little names. How can you get cranky at measuring spoons with names like 'Drop', 'Smidgen', 'Pinch', 'Dash', 'Tad'? I couldn't. I love them. $10 well spent I say.

MTHFR and Pyroluria Adventure Part 9: More Flux and Checking in with the Doctor

It's so become and adventure! An adventure with numerous rollercoasters and dizzy spells. Especially since seeing the native American healer (let's call him W) and putting colloidal silver in my eyes, nose and ears twice a day. I love it! It makes me feel funny, in a good way. And all rather cleaned out.

I've also found it's awesome for my skin! I get pimples, which initially improved a lot since upping my zinc, but then got worse once my body started detoxing. Doctor and fellow MTHFRs tell me these breakouts are normal. Way to help it is to take more vitamin C (up to 6000mg a day my Dr said) and liver support supplements like milk thistle. I've found that to be good advice, they make a real difference.

So I saw my MTHFR/pyrrole doctor yesterday. First time since starting the supplements. I told him about my weird and disturbing array of new symptoms, namely:
- The burn like-marks on my arms and pigmentation on my hands that just appear overnight.
- My menstrual cycle suddenly changing from 28 days to 21 days (wtf's with that?)
- The fact that despite having some AMAZING days, most of the time I feel weak and hypersensitive to stimulation.
- Despite feeling 'worse' most of the time I actually feel 'better'. I think that's because my mood has improved, so I just roll with whatever I'm feeling a lot of the time, as long as I can get the rest and quiet I need to not fall to pieces.

Doctor replied by saying I have a 'complicated biochemistry'. That my experience initially will be two steps forward one step back. That most of what I've described are signs of my body detoxing heavy metals which it hasn't been able to do effectively prior to taking the supplements (you need good methylation to detoxify). The burn-like marks on my arm and pigmentation, he said, were likely just that, heavy metal detoxification through my skin (kinda weird hearing a 'normal' doctor say stuff like that, stuff that if I mentioned to my regular GP, would cause much rolling of eyeballs once I left the room, maybe even before I left the room). He also said I'm likely detoxing pathogenic bacteria and parasites. Good stuff.

I chickened out of telling him I saw W, the native American healer, but instead asked him if he thought my body was overwhelmed by the supplements and should I cut back. He said no.

I say yes, lol. Only because since seeing W if I take my full dose of supplements I feel like I'm having a prolonged panic attack. Heart races. Can't sleep. It's like the very first time I took a full dose. Like it's too much for me. And it's not like that's a result of W's protocol of liquid minerals and MMS, no, all this started immediately after seeing W and for 4 days before I even started his protocol (other than the colloidal silver, which I doubt would have that kind of affect).

So my plan of attack is to talk to W and see what he thinks. And in the meantime cut back on my MTHFR/pyrrole supplements to an amount that doesn't make me feel like I have electricity coursing through my body.

I'd like to say more about my experience so far of W's protocol...but I need to study! I will say that I love the MMS! And that rubbing it under my arms (as instructed) works better than any deodorant I've ever used! Yes!! *fistpump* (I hate deodorants, I find they're either toxic, non-toxic but ineffective; non-toxic, effective but overly fragranced; or non-toxic, effective, fragrance free and super -expensive).

Life is good.

MTHFR and Pyroluria Adventure Part 8: Shamanism Anyone?

So today I saw a native American healer. Partly out of curiosity; this person has come into my life and I wanted to see what they thought of where my health is at, and partly because the 'crap days' get really wearying; maybe I'm still detoxing and maybe this process takes time, but man I just want to feel better a bit more consistently than I am. I'm EXHAUSTED, mentally and physically so much of the time.

So I saw him. He seemed to think I was in quite a state. My energy field (I imagine that's the same thing as an aura) he said was very close into my body where it should extend out much further. He told me I was very low in copper, selenium, which I know to be correct, and one other trace mineral I can't remember. He told me I have an overgrowth of fungus and parasites in numerous places in my body, that doesn't surprise me at all. He also told me that my body is being overwhelmed by the supplements I'm currently taking and they are building up in my body and that is what is causing the weird marks on my arm. He also said they had been causing my veins to constrict which has been impacting on my stamina. That also doesn't surprise me! Lol.

So he did some energy healing things which I could feel doing...something. Then his wife dropped colloidal silver in my eyes, ears and nostrils, that felt great. And then he prescribed me some much much much more affordable supplements to take; all in liquid form. Namely colloidal silver, MMS, zinc, chromium, a multi-trace mineral, and something called CMD. He says I should feel a lot different very quickly and that I'll only need to take these things for a month or so and that if anyone ever puts me on something that they say I'll need to take for the 'rest of my life' I should be questioning that.

For the rest of the day I'm not meant to lift anything and am meant to rest.

Exciting times.

MTHFR and Pyroluria Adventure - Part 7: Rough Days With Silvery Edges.

Thought I would try and post today because, normally, if I feel like I have the past few days, I wouldn’t normally be up to posting due to feeling exhausted and unable to focus. Even if all I’m doing is staying home all day, exhausted.

This has been happening since I took that damn Doxycycline back in May. It’s like I get flashbacks of what that bad reaction was like every time I get hormonal, which for me is just over two weeks a cycle. And what makes things a bit extra intense just lately is that since taking the MTHFR/pyrrole supplementation my cycle has suddenly gone from being 4 weeks long to 3 weeks long! Lol! So for less than a week every three weeks I feel really fucking good. Amazing. And then for a bit over two weeks I feel a range of not so great to completely exhausted and please don’t talk to me because your voice feels like burning. Yup. LOL! Madness!

I will say, however, that what has improved with taking the supplements is my ability to deal with feeling fucked. I don’t feel suicidal or utterly hopeless like I did while taking the Doxycycline or in the PMS periods after taking Doxy but before starting on the supplements. So that is awesome news! What I do feel is extreme fatigue and unable to handle much stimulation. Like someone talking to me, that quickly becomes unbearable. It’s kind of embarrassing, someone will be talking to me and all of the sudden I’ll ‘hit capacity’, as I tend to refer to it, and then my eyes will start to get all watery and I’ll feel rather anxious to escape. Same happens if I go shopping or have to make a lot of decisions. I also can’t seem to handle listening to music for very long or wearing tight or irritating fabrics. Lol! I sound all a bit on the autistic spectrum! Actually that doesn’t sound that crazy considering the research I’ve read into the connection between gut dysbiosis and leaky gut with autistic symptoms (like this: http://www.nleducation.co.uk/resources/abstracts/dysbiosis-in-autism-more-evidence-confirms-association/)

…hmm, interesting. Doing work for college I can handle in small doses if I don’t have to think too much.

So yes. Today is one of the more fucked days. Need to go to the shops but just can’t bring myself to get in the car. Too tired and it feels like my adrenals are writhing, all tender. I’ve also had some weird-ass detoxification symptoms pop up this past week. What looks like burns have suddenly appeared on my arm…I don’t remember burning myself. I might be prone to dissociation but except for the few quite profound episodes I’ve had, I always remember when I hurt myself and I’m quite sure that hasn’t happened this week! If it wasn’t for the fact that despite feeling all the crap stuff I’m also feeling a lot better in a lot of ways, I’d be a bit concerned. I trust it’s all just part of detoxifying, will check with my doctor soon though.

However, although it all sounds pretty bad, good things have been happening! Before this unawesome period started my skin and eyes started to look really quite amazing. I’m not even sure what it was, all I know is that I would look in the mirror and think “wow, I look different, I look better!” And when I have my feeling good days they are feeling amazing days! And I’m feeling a LOT better about my hair thanks to finally dishing out the money to try Morrocco Method. I highly recommend those products and the advice they give, like their regular hair brushing technique (even for curly hair like mine) and instructions on how to cut your own hair, which I did this week! And I love it! :D

The other good things are that my muscle mass is slowly returning and I (when feeling well) have more strength. I’ve upped my weights at the gym and am finding myself walking more, when for most of last term going to the gym meant I couldn’t do anything else for the rest of the day, not even study. And walking to the station to get the train just seemed out of the question if I wanted to be able to concentrate at college.

I think what is also helping is knowing I have more tricks up my sleeve. This Sunday I have a session with a native American healer who I’ve come to know through friends. I’m not sure what to expect other than from the stories he’s told us it sounds like there’s little he can’t help heal. Considering how not good I’m feeling now Sunday can’t come soon enough! Don’t want to get my hopes up though. But I’m very curious as to what he’s going to pick up on and what he’s going to recommend I do to heal.

And if that doesn’t work there is another quite remarkable sounding practitioner I would like to work with; Donal Carr at Place of Chi. He’s Australia’s most qualified CHEK Practitioner and has worked with many professional athletes and Olympians struggling with everything from chronic fatigue and serious physical injury. I saw him yesterday for a introductory consult and I would love to take up his offer to work with me but what with college and working until Christmas I think that will have to wait. I also want to wait until after working with Wolf on Sunday. Who knows, I might be all better soon! Lol! Ahh…that would be awesome. Even if I am feeling better I would still like to work with Donal. I love the sound of the CHEK system (created by Paul Chek) and would like to experience it first hand and consider practitioner training in future.

And if those two things don’t work, I still have something else up my sleeve to try but I won’t talk about it yet.

So yes. Good stuff happening despite feeling crap most of the time! Lots of exciting options that keep me hopeful and optimistic.

Now for an epson salt bath to help with this detoxing process.

MTHFR and Pyroluria Adventure Part 6: Roller-coastering

Shortly after my last post about feeling AMAAZING, I unfortunately began to feel rather less than such. Lol. I think that's in part because I was still adjusting to increasing the dose of my new supplements, and partly because I was PMS-ing, and since my Doxycycline experience 3 months ago, PMS has felt a lot like a repeat of that experience, if not anywhere near as intense. 

My guess is that's due to the Doxycycline nuking my beneficial gut-flora, and my theory is that gut flora might play a role in helping one to be more mentally and physically resilient during times of hormonal changes. 

Whatever the reason, focussing on recolonising beneficial gut flora is usually a good idea post a course of antibiotics. So I've been enjoying my fermented veggies, occasional yogurt and kefir, as well as taking a variety of different probiotics supplements, not all at once. I rotate them every week or so. Apparently ingesting a range of different probiotic bacteria is a good way to go. The next one I plan to try is Gutpro http://organic3.com/gutpro/. I've heard it's favoured by people on GAPS protocol due to it's ability to repopulate the gut flora whereas most of the probiotic supplements you buy don't do this.Yes! How about that? Apparently they do make a beneficial difference on their way through the gut so are worth taking but for whatever reason the bacteria from most probiotic supplements aren't able to take up residence in the gut, which you want them to. Well, this is what I've been told but we haven't learnt about this in detail yet, so, maybe do your own research. In fact always do your own research. I may have gotten HDs again for my second lot of exams (thank you, thank you) but I get stuff wrong, man do I get stuff wrong! Like being raw vegan for too long... Damn. Anyhoo. Learning experience!

I have more news but it can wait for another post. Let's just say PMS has passed and I'm back to feeling my new, improved, AMAZING self, a good fair bit of the time. Yay! :D

MTHFR and Pyroluria Adventure: Part 5: Herxing and some reflections on attachment and letting go.

My doctor warned me about 'herxing' but I didn't pay much attention. I thought "Oh, it couldn't be much worse than how I've been feeling without the supplements." Turns out I was a bit wrong. In case it's helpful to others experiencing similar, I thought I could list here some of the fun and curious reactions I've experienced since starting my new supplements. 

So the afternoon they arrived I excitedly took the morning dose of 6 capsules at about 3pm reasoning that that would a be a good idea because I obviously need these things, and that at dinner I could take the evening dose. Despite a rather profound experience of feeling truly nutritionally satisfied a few hours after that first dose, once I took the evening dose things turned. There was no sleep to be had that night. There was instead much tossing, turning, sweating, delirious mind racing and such vigorous pounding of my heart I was genuinely concerned I might spring a leak somewhere. Next day I was faint, a bit out-of-it, but wired at the same time, it was like feeling caffeinated to the point of my brain being filled with white noise; not a functional kind of stimulation. Thank goodness this happened after my exams! Driving felt unwise. B vitamins and methionine eh? Powerful little things! I stopped taking them and called the doctor. He said "oh yes, you're a severe undermethylator so you're likely to react, start slow and increase the dose gradually over two weeks." So I've done this and have got a fair bit more sleep since but still am feeling rather dissociatey (my word for 'not quite here'), have gotten a couple of headaches, bit of nausea, a few strange red bumps on my skin, night sweats, the occasional racy heart, but overall much improved. Oh and my hair is falling out. Actually that started when I started taking activated B vitamins and a methyl support supplement when I knew it was likely I had the MTHFR mutation. But now all of the sudden I look like I've had a haircut and I haven't. I trust this is all leading to something good, lol, so I'm just going to let go of attachment. I just hope I don't lose too much more before things turn around!

Actually on attachment and losing things; this has been such an interesting year in relation to such. My whole body shape has changed in a matter of months. As a model known and often praised and sought after for my particular shape it has been REALLY confronting to have that change so quickly. Even though I actually like the shape I am now for a while there, though, I found it very disturbing to look at my reflection in the mirror at the gym because I didn't look like myself. It was like "That's not me. Where am I??". Even now my brain still has a hard time recognising my reflection as myself. I can see it as a nice curvy body, and look, it even has boobs! But it's not my body. And then to be losing my hair (not only a feature on my modelling resume but something I've strongly identified with my whole life; it's long and curly), and energy, and the ability to eat whatever I want without getting strange reactions. Lots of letting go and surrendering to this path, wherever it's leading. 

There have been times, usually while under the influence of hormones or that damn doxycycline, where all this would just seem too much and I'd get upset, but generally I feel up for it. It's like "Ok life, I get it, I won't fight. I give in, I'm listening, just show me what you want me to do, where you want me to go." And I find that when I do that I intuitively know what I need to do next, even if it doesn't seem to make much sense at the time. It reminds me of what I was taught in my years of studying Sufism, and which always made me feel rather uncomfortable; that when God wants to draw someone closer, He/She/It often uses misfortune or disease to do so, because until the person lets go of attachment they're distracted from connecting to God. So I'm just going to let go of attachment now and start talking to the Universe a lot so we can avoid me losing all of my hair, ok? 

Something I heard said recently really resonated with me in relation to this whole experience and has helped me feel even better about it. I think it was Ana Forrest who said it: "Things don't happen to us, they happen FOR us". All this is leading somewhere worthwhile. I can feel it :)