Active B supplements - and a graph!

In basic terms, because I have the Heterozygous C667T type gene defect, this is the version where only half of this gene is mutated so I received this defective gene from only one of my parents instead of both. People who have the Homozygous gene defect will need different doses of these supplements to me as this type of defect means that they heal at a far lower rate compared to normal people’s cells, whereas my gene defect means that I heal at a rate of approx 60% - 70% of a normal person.

The first supplements I started off with last week were the 3 Active B’s and a probiotic and I have just started the remaining supplements last night.

As I'm now living in quite a small town in the North Island of New Zealand I have emailed all the local ND’s and unfortunately they are either not aware of the MTHFR gene mutations or do not know how to treat them, so due to not actually having received any medical guidance with these supplements it is going to be a bit of trial and error for me. I have done ALOT of research and I feel like I have always been pretty good at knowing my body and when something is going on that is not quite right, so fingers crossed that I’ll be able to pick up on any negative effects quickly. Please visit this link that explains some of the side effects that may occur from over-methylation from using these supplements http://stoppingtopicalsteroids.blogspot.co.nz/2014/04/side-effects-from-mthfr-supplements.html

I would strongly urge anyone to seek medical advice in regards to their own required dosage amounts.

L-5-MTHF

Brand I’m taking - Designs For Health, L-5-MTHF, 120 Veggie Caps

• Folic acid is Vitamin B9 
• L-5-MTHF is the activated form of Folic Acid. This gene mutation does not allow folic acid to be converted into the active form which is necessary for your body to repair cells. 
• Active form of folate = L-5-MTHF = Methylfolate = 5-methyltetrahydrofolate reductase 

Active B12

Brand I’m taking - Solgar, Sublingual Methylcobalamin (Vitamin B12), 1000 mcg, 60 Nuggets

• Active B12 and L-5-MTHF go hand in hand to bridge that genetic gap 
• Active B12 = Methylcobalamin. If it says Active B12 (Cyanocobalamin) you’ve got the wrong stuff 

While methyl-B12 is a great form to use, some individuals will need to use more Hydroxy-B12 than methyl-B12. This is due to another genetic mutation, known as COMT. COMT is the enzyme that breaks down dopamine, other catecholamines, and estrogen. If an individual has this mutation, too much methyl-B12 may be overly-stimulating and can cause side effects, such as mood swings. 
http://functionmedicine.com/blog/?p=63

Active B6

Brand I’m taking - Country Life, Gluten Free, Active B6 Caps, P5P/PAK, 30 Veggie Caps

• The B6 methyl version is called P-5-P. The synthetic version is Pyridoxine Hydrochloride 

Probiotics

Brand I’m taking - MicroGenics Probiotic 8 - Dairy Free

• Personally I think this is a necessity for me as I have previously had problems with candida and I just feel like my original eczema stemmed from a leaky gut and crappy eating when I was much younger 

Day 1 - 3

• Active B’s - Starting with the recommended dosage on the packet of 1 capsule per day for each of the 3 B’s (1000 mcg = 1 mg). 
• Probiotic - 1 in the morning before breakfast. This dosage will remain the same.

I felt fine these first 3 days, not anything noticeably different although I did feel like my brain is a lot clearer… Im not really to sure how to describe this feeling and Im also not to sure if it is just a placebo effect as I am really thinking that these supps are going to do me good. I also noticed a slight increase in energy in the mornings (tired in the evenings though as I have stopped taking Licorice Root for adrenal support). Have also noticed that my legs were a bit achey.. but this could be due to helping out in the garden and being slightly unfit haha.

Day 4 - 6

• Upping my dosage to 2 capsules per day of each (2000 mcg = 2 mg). 

Not much to report after these next 3 days. Skin still holding steady. Still not really any increase in itching or much more dryness. Yeah…..


Days 7 onwards I am starting on the NAC, TMG, MSM and Glutathione, will report back later on how I go adding these to the active B’s.

Future predictions.. Or possibly hopes

What I really hope DOESN’T happen:
Because my skin has been so stable in this initial part of the withdrawal, I really really REALLY hope that I am not going to be one who gets the big flares later on down the track. I have planned this so carefully and done as much research as I possibly can to prepare for this. I feel like I’m doing everything that I can possibly do to help myself recover (apart from maybe eating a few to many chickpea brownies).

If I have the big flares later, I can quite honestly say that I will be extremely and absolutely gutted. I had fully prepared myself mentally for going straight into a flare in the first couple of weeks and the way my skin is going at the moment I really don’t see that first big flare coming anytime soon.

Im not to sure how I am going to deal with it if I do have big flares later. I suppose I will just have to wait and see.

What I really hope DOES happen:
From a lot of reports of people who have been in the midst of TSW and have started these supps, a lot have seen significant healing (50 - 60%) in the first few weeks/months following the start of these supplements.

What I am hoping this means for me is that I’m not going to have the big flares, ANY big flares and that what I have done by starting the supps before any big flares is I have caught my skin at that 50 - 60% healed mark (not sure if that makes sense… see graph)… and then I will gradually make the climb back up to good skin the same as every one else is while using the supplements. Fingers crossed.

It will be interesting to refer back to this graph over the coming year.

I know that my skin is not going to magically be amazing what ever happens, but… I JUST WISH I KNEW!!!

WEEK 3

The end of week 3 is coming to a close with not a lot changing for either the better or the worse...

Everything seems to be holding steady. For the moment anyway.

My face is still the worst part about me, thats pretty much the reason why I haven't posted any pics of anywhere else. My only current symptoms (apart from my face) are...

• elephant skin starting to develop behind my knees now as well as the front and in the creases of my elbows
• strong metallic smell when I scratch
• sleep is CRAP if I don't take any sort of antihistamine, I try to take them every 2nd or 3rd day though so my body doesn't get to used to taking them
• arms are dry and constantly 'snow'
• have the slightest RSS around my hands and wrists, though I would have no worries placing a bet on the fact that I would probably look twice as bad if I was moisturising at the moment.
• still getting the random sweat attacks now and then... not every day anymore though
• have also grown 2 more lymph nodes so that equals 7 that I have discovered altogether

Heres this weeks pics...

Day 16

Day 8

Day 20

Day 21

Day 22

I guess looking at these pics when they are so little like that almost makes me look like I'm normal. From a distance I could probably pass as having not much wrong with me. It's when I zoom in that I can see all the little pieces that I have become addicted to obsessively trying to pick off.

I have also recently decided that I'm not much of a fan of showers at the moment. Not much of a fan at all. Day 20 I think was my worst day this week and thats because I had a shower in the morning and it was the most amazing feeling letting all the moist dead skin wash away under some gentle encouragement... I possibly got a little carried away but thats beside the point.

Shortly after my shower all the new baby skin that probably wasn't ready to see the world yet started getting dryer... and dryer... and dryer until I was almost back to how tight it was on my first week!!! Yikes! I was not a happy choppy that day. But after a good sleep I was pretty much back to the new normal.

Oh and heres a pic of my sort-of RSS... I'm absolutely 100% sure that if I was moisturising at the moment it would be way worse than this...

Not really really red like some people but there is definitely the line between white skin and red skin.

Anyway, I've been on the 3 Active B's for the past week so I am going to do an update on those tomorrow.

Its only been 3 weeks and I'm already running a little short on patience...

Stress, flaring and your adrenals

After putting a lot of thought into this over the last couple of days I really wanted to put down in words how stress is a big factor in eczema/rashes/flaring for me and what I (try to) do to combat it.

Ive noticed it quite frequently on different occasions when I’m having a stressful moment my cheek will start heating up or my back starts to get prickly.

There are definitely ways to control stress in most situations (obviously not all the time every second of the day) but most stress is avoidable if you just allow a bit of extra time for yourself to just breath.

Enough sleep is sooooo important!

• as much as possible, although I’m not going to go over board and get lazy, I’ve still got to keep some sort of a routine 

Relaxation and positive thinking

• deep breathing 
• writing down every day things that make you happy 
• also writing down the things that are making you stressed/angry as this often stops you from dwelling on it 
• reading 
• yoga and meditation 

Having support for day to day things and asking for help

• if I’m tired I ask my partner if he can can make dinner or do the dishes/cleaning etc 
• its important to talk to someone you trust, who understands (well someone who is a good listener anyway!) 

Exercise and being healthy

• every morning I have a warm ACV and honey (Ive been doing this every day over the winter months for the last 3 years and are yet to get sick) 
• I used to go for 30 minute runs and I enjoy getting out into nature but for the next little while I will be reducing my exercise to walking and hopefully jumping on a mini trampoline if I’m able to get one (help my lymphatic system) 

Having hobbies

• my blog 
• painting/drawing/sewing… basically anything creative 
• working on developing my business 

Getting to know yourself better and recognise when your stress levels are starting to rise

• this is very very important!! Sometimes I feel like my own counsellor… ‘So why are you feeling down/stressed/anxious today and what do you think the reason is…’ hmmm yes I do talk to myself in my head haha 

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What part of your body is supposed to control stress?

Normal Person…

In a stressful situation your body prompts your adrenal glands to release a surge of hormones. Cortisol is the primary stress hormone, which is kind of like an inbuilt alarm system. It basically puts your body fight or flight mode.

Once you have calmed down and the stress has passed, hormone and blood pressure levels return to normal and other parts of your body that were prepared for fight or flight return to their regular activities.

When constantly feeling stressed or pressured, this alarm system is always turned on which could lead to an overexposure to NATURAL cortisol and other stress hormones, this is why it is so important to remain as stress-free and calm as possible and to become more aware of when your stress levels are rising.

Naturally produced cortisol from your adrenal glands does not only control stress though... It also helps maintain your body’s anti-inflammatory processes.

So, what about a person going through Topical Steroid Withdrawal… ?
Corticosteroids are supposed to mimic the effects of naturally occurring cortisol in the reduction of inflammation… Well I guess we all believed the doctor when they prescribed us that first tube of Topical Steroids…

But what happens when we stop using the steroids?

Our precious little adrenal glands that we have neglected to use for so long have probably decided that it may not be so necessary to continue producing cortisol at normal levels. Which means that any stress that we are put under during the initial part of the withdrawal probably seems so much more intense than when we were previously still using TS.

I guess the words to describe your under-utilised adrenal glands would be ‘adrenal fatigue’.

So this is where stress-reduction becomes an absolute necessity for folks suffering TSW. Until your little adrenal is up and running again, to much stress will just put that extra ton of bricks onto your bodies already heavy load.

A natural Adrenal support…

For the past 6 months or so I have been taking Licorice Root capsules to support my adrenal glands while reducing my TS usage. Im not to sure how well they have been keeping me less stressed but there was one occasion where I ran out of the supplement for about a week and I was just so unbelievably, ridiculously, like couldn’t stop yawning or my eyes open all day at work tired… So I guess it must have been doing something good for me.

Still very popular in Chinese Medicine, Licorice Root has been proven to boost energy levels as well as regulating the production of hormones in your adrenal glands. It has been said that long term, or overuse of this supplement could have serious side effects, but in general, low or occasional use of liquorice root is considered by many to be a beneficial treatment for adrenal gland issues.

__________________

So I guess when it comes down to it... when you get stressed your adrenal gland just isn't quite up to the challenge of keeping you in fight or flight mode AND maintaining your body's anti-inflammatory processes. 

All things come in good time though I suppose :)

WEEK 2

The end of my second week has come and gone... my face becoming relatively stable (by stable I mean really flakey still with quite a few little sores here and there but not swollen anymore) after its initial freakout at not having any moisturiser or Elidel every day.

The rest of me is still doing better than I expected at this point... currently three weeks out from putting any Topical Steroids on anywhere. My arms and hands have become a lot more snowy and dry and when I have showers my arms turn bright red under the water... Its usually only warmish... I never have super hot showers anymore like I used to. Showers are a little stingy sometimes as well which I guess means I do have a few raw patches/cracked skin here and there.

Now for my photos...

Day 9

Day 10

Day 11

Day 12

Day 13

Day 14

I'm thinking that my first real flare is still yet to come unfortunately. I planned this whole thing out with the idea that I was going to go into a big flare pretty quickly after stopping the steroids... Its turning out a little different than I planned haha.

Oh well I suppose that life will never go exactly to plan! No matter how well you think you've planned it or how ready you think you are... things will always end up differently. I'm just thanking my lucky stars and my guardian angel and whoever else is looking down on me at the moment that I can sleep fine most of the time, I can wake up and be functional, I still don't itch that much more than I did before, Im not oozing or swollen and that I have the most amazing family and partner who are so understanding and supportive. 

ALSO!! My supplements arrived!! SO fast as I wasn't expecting them for another week or two but I'm going to do a bit of research tonight on what would be the best dosage to start off on and we will see how I go!!

The Lymphatic System and Swollen Lymph Nodes

At the moment my largest swollen lymph node is about the size (width and length) of my pinky.

I currently have:

1 - lower left side of my neck

1 - left shoulder blade

5 - hip/groin area

Last time I went through semi TSW about 5 years ago I got one in my right arm that was so huge it was scary!! It felt like if I’d been able to pull it out of my arm it would have been about the length of my palm and I would have been able to wrap my fingers around it comfortably.

When I went to the doctor they diagnosed it as Deep Vein Thrombosis. This happens when a blood clot forms inside a vein blocking the blood flow. Its quite a serious condition if this is what it actually was, as I would have had to go onto all sorts of blood thinning medication.

As it turned out I had a scan of it and there was nothing that showed up as a blood clot (luckily). I don’t think there was anything else done after that, I think I just had to sort of wait it out. I also had another large one in my leg… not quite so big but they both disappeared over time as I gradually started recovering (with the use of topical and oral steroids).

SO the lymph nodes are back!! Not quite so big or scary this time as I know what they are now. But I’m quite interested in finding out what the lymphatic system actually does… because with veins etc you know exactly what they do!! But the lymphatic system is like this whole secret little network in your body that most people would never even realise is there!!

Questions I want answered!!

_________


What is the Lymphatic System and what does it do?
Sooo in very simple terms… The main function of the lymphatic system is basically a drainage network used to transport a clear, colourless fluid containing white blood cells, protein and other things that help rid the body of toxins and waste. If the lymphatic system didn't drain the excess fluid, it would build up in the body's tissues, and they would swell (more on this in the remedies section).

The lymph nodes are small masses of tissue located along the lymphatic system. They are where all sorts of germs are filtered out. The lymph nodes are home to a type of white blood cell that makes antibodies to destroy the germs that are collected by the lymphatic system.

Organs connected to the lymphatic system are the tonsils, adenoids, spleen and thymus.

Tonsils - they are a large cluster of lymphatic cells in the back of the throat. They are there to protect the digestive tract and lungs from germs that enter the mouth or nose.

Adenoid - (when I first saw this word I thought ‘Adrenals! Ah Ha!) but on further investigation I found that Adenoids are a cluster of lymphatic cells near the nasal cavity close to the tonsils and both are often removed at the same time if you have tonsillitis. Their job is similar to the tonsils.

Spleen - connected to the lymphatic system. It contains white blood cells that engulf and destroy bacteria, old red blood cells and dead tissue.

Thymus - the Thymus Gland (located near the centre of your chest) is the main organ of the lymphatic system. It creates specific cells for the immune system that are transported to the spleen and lymph nodes to help in the fight against infection.

Still can’t quite fit all the pieces together in my brain but at least now I know what its there for!


Why do I get swollen lymphs?

When lymph nodes swell in two or more areas of the body, it is called generalized lymphadenopathy. This may be caused by several things…

- Viral infections or side effects of the MMR vaccination
- Fungal Infections
- Bacterial infections
- Various forms of cancer
- Side effects of medication, alcohol abuse or stress
- Aids or HIV. This virus attacks the immune system, making it hard for the body to fight infections.
- Various other things such as bug bites or tooth decay

But wait… no Topical Steroid Withdrawal???

I found this sentence on Wikipedia (not the most reliable form of information but hey)…
‘If nodes detect something foreign passing through them such as a bacterium or a cancer cell they will swell up.’

Now I’m guessing that there is probably plenty of ‘foreign’ things floating around my body at this moment but nothing (touch wood) from the above list and nothing else that I can think of that would warrant as infection. 

Hmmmm so after all that I’m still not 100% sure what swollen lymph nodes have to do with TSW … Help anyone???

One theory is that now I have quit TS, everything that was once suppressed by the cortisone in my blood stream has now decided its time to start working again… this includes the lymphatic system???

Natural remedies for the lymphatic system
So the lymphatic system moves veeeeery slowly. Its kind of like when you move, your lymphatic system moves to. For example… have you ever woken up with puffy eyes? Yes? This is because while you were sleeping you probably weren’t moving a heck of a lot. Meaning no body movement = no lymphatic movement = lymph fluid build up = PUFFY EYES!

The fluid build up will most likely be worse when your sick and not functioning at your best (hmmm this sounds a little familiar).

So the best way to kickstart your lymphatic system that I have found after all this research is to jump!! Easy as that!! Up and down on a mini trampoline… To be honest I have not actually had a chance to purchase a mini trampoline yet but it makes a whole lot of sense to me and sounds like a whole lot of fun while your at it!! :)

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For more information on this topic please visit http://www.mygutsy.com/jump-out-the-toxins-rebounding-for-lymph-drainage/   <- its a great page that talks all about cleaning out your lymphatic system

WEEK 1

So my first official week has gone mostly how I thought it would.. with a few surprises.

I'll start off with my face....

From the first day that I quit Elidel my face went red and puffy for a couple of days then super dry and super swollen for a couple of days and the last couple of days its been doing quite a bit of shedding  and the swelling has reduced ever so slightly.

From day 1 I stopped using moisturiser also, so I think the dryness/shedding has a lot to do with moisturiser withdrawal.

Heres some pics...

Day 2

Day 3

Day 4

Day 5

Day 6

Day 7

(if you wanted to enlarge the pics I think you just click on them, probably

not a great idea though unless you want to be scared for life haha)

Gosh what a mess!!! Ive covered up all the mirrors in the house so I can't actually see what I look like apart from looking at my daily pics on the small camera screen or unless I peak at the glass on the microwave. 

As for the rest of me, there is nothing interesting to report other than the fact that Im not any itchier than before I quit using TS.... This is where I start to get a little confused....

I knew that my face would go bad quick and the rest of me would follow in the next few weeks or so. But I also expected to start getting gradually itchier, to start developing little rashes here and there and for my skin to get redder and redder... slowly of course.... but this has not happened! None of it!! 

Now Im not complaining, but I'm just really really confused thats all, because if anything, the rest of me has actually gotten a little better.... apart from the metallic smell and a few little sores that I've scratched on one of my hands.

I am going to have to put this quiet skin period down to the lack of stress. Im home with mum now, chilling, reading, walking, researching, sleeping, eating healthy, drinking lots of green tea and a little ACV, watching movies and Ive had not a lot of other human contact over the last week which has suited me just fine as I feel like I could probably make a baby cry at this moment.

My sleeping patterns at the moment are into bed at 10pm, with waking periods between 1pm and 4/5am. A couple of nights I will wake a few times and then fall back to sleep quite quickly, other nights I will wake and then stay awake for a few hours. But this generally hasn't bothered me to much... mostly when I wake up at 1pm I'll be soaked in sweat and have to get changed... I'll have a scratch from being itchy from sweating but once I've dried off and cooled down I can jump into bed and be quite calm until I go back to sleep.

At the moment I consider myself to be very luck so far and I will feel like I've won the lottery if it keeps going this way. Of course I have to be realistic and I know that I'm only 1 week in to this wild ride.

I've got my first doctors appointment this afternoon so Ive armed myself with all sorts of research. I don't actually feel like I need any medication at this point, I've been taking OTC antihistamines a couple of times to get a more solid sleep and ibuprofen when I fell a little sore, but I feel like I need to build some sort of a relationship with a doctor who is semi understanding if things take a turn for the worse.

Still haven't had a chance to order my supplements yet as I'm waiting for my new credit card to arrive in the mail but hopefully this week sometime I'll get a chance to do that.

Haven't got much else to report... I just wish I could predict the future sometimes.

DAY 2

Was going to post yesterday on my first day, but I was just so tired I went to bed at 8.30pm last night and slept 11 hours (woke up 11pm to 1am) but jeepers I must of needed it!

Today marks day 2 of not using any sort of immunosuppressant i.e. elidel (have been using this for the last 7 years daily on my face) and day 7 for no Topical Steroids, but I will say that this is just day 2, bit easier for me to keep track of!

Also day 2 of no moisturiser on my face!

So far so good, I've noticed that my cheeks and upper lip have started to go quite red and swollen but not so itchy at the moment... I imagine that this is going to keep developing over the next few days?? months??

As far as the rest of me goes, still in a pretty stable state. A couple of things to note:

• elephant knees are looking VERY elephanty!
• got quite a few nicks/tiny cuts and scratches on my knees, ankles and knuckles... no oozing yet though
• snowy skin
• get these real weird random as sweats around my stomach/back area only! Just sitting down doing nothing and within 5 minutes my singlet will be saturated! Its happened once today and once yesterday and I just pull my singlet up to cool my stomach down and the sweat dries up and it stops. This has happened a couple of times over the last month or so but I didn't take much notice of it until today since its been 2 days in a row this has happened. Suppose I will have to wait and see if this is going to be an ongoing thing as I know a lot of TSW warriors didn't really sweat at all until later months! I do get night sweats now and then though so not sure if this has something to do with that?
• metallic smelling skin occasionally 

Wish I could invent some sort of time machine to fast forward through all the rest of it... but thats not how life works unfortunately.

Tonight I am going to start writing down everything I'm thankful for from now on... got to keep a positive mindset!!

RESULT - MTHFR Mutation Detected

So!! After waiting 8 long weeks I finally received my results back today and guess what… the result was MUTATION DETECTED!!

What is says in the fine print of my results is that I have the MTHFR;p A222V (MTHFR;c 665C>T) Heterozygous form of mutation… which after a little research I found out is the MTHFR C667T gene.

In mild MTHFR deficiency, the most commonly associated variant is the C->T sequence change at nucleotide 677, called MTHFR C677T (standard nomenclature c.665C>T)
http://path.upmc.edu/cases/case677/dx.html

Referring back to my post 'The MTHFR Gene Mutation'…

Heterozygous: means you have one copy of either the 677 mutation, or the 1298 mutation, plus a normal one from the other parent.

Im not sure what this means in terms of my recovery, as I don't have the two defective genes it's a possibility that I might be one of those who heal at a quicker rate? Im not going to speculate on that to much though and I am going to still be realistic in terms of my recovery and aim for full recovery in a year and a half. Though less than a year would be mighty fine indeed!

My start date for TSW is in 3 days, Monday 7th April! Yikes!! See you on the other side…