Monday, 25 August 2014

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 :)

Saturday, 16 August 2014

MTHFR and Pyroluria Adventure: Part 4 - Pyroluria and dissociation


VERY interesting fact (that I haven't yet checked the references for) about pyroluria/pyrrole disorder:

"It’s onset usually occurs during teenage years with a traumatic incident or stress, such as a change in school, loss of a loved one or moving towns. Even though the disorder does not show until teenage years it is thought to be genetic. Depending on the degree of the disorder there may be severe depression, schizophrenia, alcoholism, autism, bipolar disorder (manic-depressive disorder) or on rare occasions, DID (dissociative identity disorder more commonly known as multiple personalities). All of these are different manifestations of pyroluria."

That's pretty much my story and I have DID...(well my psychiatrist calls it it DID, I think just for convenience. I think I only fit the not quite as extreme DDNOS/OSDD criteria).

Wow...As far as I've always heard from 'experts' in the field, dissociative disorders are due to trauma, and that's pretty much it. Yes they express differently by different people but I have never heard links to nutritional malabsorbtion... I must say I'm in a little bit of shock.

And although I'm surprised I'm not surprised, not with the links between nutrition and autism and other psychiatric conditions. But man...wow...

Lol, wait til I tell my psychiatrist! 

http://changinghabits.com.au/_blog/Changing_Habits/post/Pyroluria_-_A_Zinc_and_Vitamin_B6_Deficiency/

MTHFR and Pyroluria Adventure: Part 3 - Results Are In

So all tests are back. The doctor was right! Of the two main MTHFR gene mutations that one can tend to have, I have homozygous A1298C. Homozygous means I have it on both genes, Meaning that both of my parents carry the mutation and passed it on to me. If I had it on only one gene it wouldn't cause me any problems, but having it on both genes is a problem and means I will have to take specific supplementation for the rest of my life if I want to stay healthy because I'm not able to get what I need from food alone, at least as I understand it. I'm ok with that, as long as it's not too ridiculously expensive. In which case I'll pressure my parents to help fund it because they're their genes after all! LOL!


I also tested positive for pyroluria/pyrroles disorder which causes one to be deficient in zinc and vitamin B6. However I'm only borderline, so that's good news. Still, treatment is similar to MTHFR because I can't get the nutrients I need from food alone and so will have to supplement. Luckily I'm not high in copper which is often a troublesome symptom for people with pyroluria.
The doctor wrote me out a prescription for compounded supplements (ie supplements made by a compounding chemist especially for me). This part sounds very expensive and I am a little concerned. However one of my friends with MTHFR and pyrroles has a doctor who suggests she buy her supplementation on-line which would be enormously cheaper. I figure I'll go with the compounded supplements for the first month and then reassess after that. 
The past few days, knowing it was likely I was going to test positive for pyrroles, meaning low in zinc, I upped my zinc to 70mg a day; for a normal person that's potentially dangerous. Man, you should've seen my skin clear up!! That was exciting!! And the cold I had just vanished!! Lol! Awesome, bring on improved health I say!


Here's a couple more websites with good info on MTHFR:
http://doccarnahan.blogspot.com.au/2013/05/mthfr-gene-mutation-whats-big-deal.html

And pyrroles:
http://changinghabits.com.au/_blog/Changing_Habits/post/Pyroluria_-_A_Zinc_and_Vitamin_B6_Deficiency/

http://www.truevitality.com.au/articles/pyrrole-disorder/


MTHFR and Pyroluria Adventure: Part 2 - The No Supplements for 2 Days Experiment

1st August 2014

Well, that was an interesting experiment! My new doctor arranged for me to get pathology tests for MTHFR and pyroluria today (I will explain what they are eventually). That meant not taking any vitamin or mineral supplements for a couple of days. I was quite pleased about that, I was hoping I might even feel better than normal! Well, yesterday I felt distinctly off-colour but not too bad, and I thought that was as bad as it was going to get. Then this morning I woke feeling not so great so I decided to put on headphones and meditate. I normally find this soo calming but I couldn't relax. My brain was all...fractured and jumping around. Then I noticed my leg muscles were twitching, a lot (magnesium deficiency anyone?), my teeth ached and I had a funny rash on my arm! Lol. Madness! I got out of bed and tried to make breakfast but I felt out of it and faint, almost to the point of thinking I might fall over. I felt a bit better after breakfast and left the house to drive to the special pathology collection place get the tests done. Once I got there I realised I'd left without my wallet (which I never do) and couldn't arrange payment. That and other small dilemmas had me getting teary on and off throughout the day, which I realised were overreactions, but I just couldn't help it, I was ridiculously moody. If I had a sad thought I was likely to start crying.

So, somewhat disappointingly, it would seem supplements really help me to function! "Normal' people are not like this! Lol. SOMETHING is going on! Likely to be a defective MTHFR gene and/or pyroluria says my new doctor. I hope he's right. I could really do with some normal. :)

Unfortunately in my vagueness I also forgot to fast so I have to do one more test on Monday which means no supplements over the weekend! Lol. I think I'm just going to settle back and try and enjoy this crazy ride for what it is.

So MTHFR I just explained for someone. Here:
"MTHFR stands for methylenetetrahydrofolate reductase. It's an enzyme that converts the folate in your food into an active form of folate that your body uses to do lots of VERY important things, either directly or indirectly (like creating serotonin and dopamine, detoxifying the body of heavy metals, turning stress responses on and off, controlling inflammation, creating white blood cells, and HEAPS of other things). If you have the MTHFR gene defect then you can't convert enough folate into the active form and so all manner of processes, mental and physical, start to malfunction. Apparently to have a defective MTHFR gene is not uncommon and it's treated by taking specific supplements and avoiding others. Doctors who know about it tend to think everybody should be tested.”

More info on MTHFR here: http://www.stopthethyroidmadness.com/mthfr/

MTHFR and Pyroluria Adventure: Part 1

30th July 2014

And following on from that big fat post, last night I saw a new integrative doctor. He believes the reason I'm still struggling with a number of symptoms (weak legs, odd rashes, overall not feeling as awesome as I think I should) despite my great diet, is that I likely have pyrrolle disorder (or pyroluria) and MTHFR. I'll explain them in more detail another time but it basically means that no matter what I eat I'm not able to metabolise or use nutrients properly which then leads to a huge variety of seemingly unrelated symptoms which get worse over time. Everything from my sensitive teeth, to slow digestion, to lowered immunity, to dry skin and thinning hair, the list goes on.


I learnt about pyrrolle and MTHFR via a couple of friends who were diagnosed with both earlier this year. Then it was casually suggested to me by a doctor that this might be my problem as well. If it is (I go for tests on Friday) then that's good news! There's effective treatment via the taking of specific supplements and avoiding others. There's probably dietary modification as well but I haven't looked into that yet. 
I'm excited not just at the idea of feeling well again but that having this knowledge and experience will help me to help others once I start seeing clients. And although more and more integrative practitioners are becoming aware of MTHFR and pyrrolle, many still don't know what it is (my last fancy expensive doctor didn't and neither did the nutritionist I saw a few months back) and so they don't know to test for it. And with conditions like these, approaches that will help most of the population will only work a little with people with MTHFR/pyrrolle if at all.

Exciting times!