Umami, Amines and PNH (Part 1)

It seems so unfair, over the last weeks PNH symptoms have flared up again and I have had to go back to the drawing board to try and pinpoint what may have triggered it off.  I could put it down to all the stress of moving during the most frantic season of the year, things not working while the world was on holiday not to mention trying to stop the flu that’s trying to grip the country in a head lock trying to grip me too. I could, but I need to cover all bases here especially taking into consideration that it has also waxed and waned during this time.

So as part of my move into our new home I invested in some new bits and pieces to ramp up my healthy lifestyle gig.  A pressure cooker to start making my bone broth in, some gelatin to heal the gut and liquid stevia so that I could wean myself off the sugar. I was good for the first week or so and then BANG!!!! Irritability, spasms, aches, tears, tantrums – OK I also cheated because when I feel bad I also eat rubbish – which I know has to stop – God help me please.  But I have learnt enough about my body to be able to pick up what is and isn’t affecting me and begin to read how. Something was different and I prayed that it wouldn’t be the gelatine. I wouldn’t mind giving up the stevia, but the gelatin – I could use that to make all kind of wonderful things – plus it replaced the eggs which I can’t eat at the moment plus it was making my hair and nails grow. Continue reading Umami, Amines and PNH (Part 1)

Thoughts on the Causes of Peripheral Nerve Hyperexcitability

This is another update on my health journey, especially for those diagnosed with Cramp Fasciculation Syndrome/Peripheral Nerve Hyperexcitability.  I hope it can add something worthwhile to your own healing journey.

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Last week was my second appointment with the neurologist and her insights coupled with everything I have learnt so far in the natural/alternative health field has made me think more deeply about the nature of this disease. Continue reading Thoughts on the Causes of Peripheral Nerve Hyperexcitability

Passover Cleanse update and step 4

I can’t believe I’m coming into the fourth week of the cleanse, I should be happy but there are a couple of things that weigh me down at the moment.  I have been in a lot of pain recently, yesterday I went to sleep in pain and today I woke up in pain, I’m at that point of scratching my head and wanting to pull my hair in frustration, why am I still feeling so bad?  The issue is that this time last year I was in a much better state (physically) than I am now, and I know there are probably a number of reasons why this could be the case.  Physically, I’ve not been as strict with myself on this cleanse as I ought to have been, the thought of doing this cleanse scared me so much that I changed a few things to make it more easy going this time around, I need to do this properly from now on.  Secondly, I feel that the more understanding and knowledge God gives you, the more He challenges you to apply His truth to your life, maybe this is another part of His oh so intensive refining process because I am that bit more stronger in Him.  I don’t know and that’s the killer. Continue reading Passover Cleanse update and step 4

A victim of dangerous disobedience…

Do you believe that there is a connection between faith and obedience, doubt and disobedience?  I do.  Most of the time we view faith as a set of beliefs or feelings and ignore the fact that faith also relates to behaviour.  I have found that people with strong faith possess a faith ‘attitude’ ie. they have the correct attitude and beliefs about God which is generally developed through a range of experiences and that these experience engender feelings of trust and security which in turn leads to increased levels of obedience.  People who struggle in their faith walk tend to show the opposite characteristics.  But what does the Bible tell us about the connection between faith and obedience?

I really want to focus on the account of Samuel and Saul as told in 1 Samuel 15 which outlines the events leading up to the kingdom finally being taken away from King Saul.  God gave Saul a commandment and Saul disobeyed (partial obedience is still disobedience) again and instead did what he felt was best to do ie. saving the Gentile King and slaughtering the sheep for a burnt offering.  What interests me is that Saul really saw nothing wrong with what he’d done, he’d killed all the Amalekites save the King, he’d managed to get all their goodies and add them to his own store house and on top of that he’d even offered a sacrifice to God (real brownie points here, no?).

No.  When Samuel is confronted with the post-conquering scene, he sees just how much Saul has disobeyed God and pulls Saul up on this, again.  Saul replies and says I took the sheep to sacrifice them to the Lord thy God, to which God answers (through Samuel) verse 22 and 23:

Hath the LORD [as great] delight in burnt offerings and sacrifices, as in obeying the voice of the LORD? Behold, to obey [is] better than sacrifice, [and] to hearken than the fat of rams.

For rebellion [is as] the sin of witchcraft, and stubbornness [is as] iniquity and idolatry. Because thou hast rejected the word of the LORD, he hath also rejected thee from [being] king.

I feel that this chapter and indeed the reign of King Saul clearly shows the link between faith and obedience and doubt and disobedience, you may question whether Saul actually doubted God, he did otherwise why would he have disobeyed Him and why address God as Samuel’s God and not his own? But in addition to this I feel that this book tells us something about the mentality and consequences of a doubting individual.  The incident described in chapter 15 was really the last nail in Saul’s coffin and from then forward God had in spirit if not in the physical given the crown over to someone who would believe and trust Him and hear and obey Him (mostly).  I see Saul’s doubt as a precursor to a chain of events not only leading to the loss of his crown but to an untimely and brutal death.  At the end of the day, it wasn’t the sheep being sacrificed but Saul himself and this is what I call being a victim of dangerous disobedience.

Saul rips Samuel's clothes
The LORD hath rent the kingdom of Israel from thee this day, and hath given it to a neighbour of thine, that is better than thou. v. 27

So why have I told you all of this, surely not another comparison on Saul vs David?  The reason I am telling you this is to set the scene for something which I have gone through this weekend past.  To be blunt Saturday onwards has been horrible for me simply because I failed to heed and obey the Word of God, as a consequence I ended up sacrificing my health and wellbeing when that should not have been the case.  Let me explain.

Usually, I am one of those people who avidly read the ingredients to everything I consume and use and discard anything that seems to have an unatural or a known toxin.  On Friday, I was absolutely desperate to dye my hair (being 30 and gray doesn’t go done well with me) and I had bought what I thought was a natural henna hair dye.  On reading the box, I saw two things which set off alarm bells in my head:

  1. A chemical ingredient called PPD
  2. The product was halal

I felt God telling me not to use the product but I pushed it aside (think Saul) and thought to myself “what’s the worst that could happen?”  So I went ahead and dyed my hair, but lo and behold the next day I started to feel a resurgence of my old symptoms return which had been dormant for many months.  At first I thought I might have eaten something I shouldn’t have but, when the intensity of the symptoms increased I knew it was more than a food issue.  After much prayer and introspection I realised that the culprit was the hair-dye, in particular the chemical included in the dye.  For those of you who do not know I have been diagnosed with CFS which is both a nerve and immune system disorder, up until this time God had been doing some wonderful things for me but this chemical turned out to be both a nervous and immune system toxin!!!

So here I am today, I’ve gone back in time reliving horrible symptoms just because I chose not to obey God’s voice.  I praise God that in His mercy, the symptoms are not as bad as they have been at their very worst, but they are bad enough for me to regret ever sacrificing myself in this way by putting my desire over obeying God’s word.  I am both the culprit and victim of dangerous disobedience, nevertheless, I choose to believe that this is just a bump in the road and that God will restore and increase what has been taken away from this incident because I have repented and seen the error of my ways.

Even though the Bible tells us that Faith pleases God, God’s pleasure is much more altruistic than our own.  If doubt cause disobedience and disobedience causes destruction, than faith causes obedience which results in life.  Faith is pleasing to God because it causes us to have life and salvation, our faith causes us to walk in paths of righteousness that will guard and protect us from destruction and sacrificing ourselves on the altar of sin.

So now, as I am working with God to counteract and treat these symptoms my plan is prevention rather than cure, to become more diligent in listening and obeying God’s Word in the small as well as the big things.

Have you ever done anything that was dangerously disobedient, or to put it another way has your disobedience ever endangered you or someone else?  If not too traumatic, I would love to hear from you.

Many Blessings in Yeshua (Jesus)

Linking up with Grace Cafe and Soli Deo Gloria this week

Cramp Fasciculation Syndrome an autoimmune story

*** This post has been updated, please see the notice at the end.  Thank you***

The last week or so has been an immense struggle for me, recovering from the flu has affected me more than I realised which makes me think that my health condition is immune-related.  I actually did not want to write about this today, I wished I could be more positive and give more upbeat advice but the truth is that I have good days and very bad days and coming down with the flu has seemed to exaggerate my symptoms ten-fold.

So what exactly is wrong with me, then?  Well, to be honest no one actually knows but I have been given varying diagnoses and I have chosen the one which seems to reflect my symptoms the most.  According to a Neurologist at St. Bart’s London I have a ‘minor’ form of Peripheral Nerve Hyperexciatability disease called Cramp Fasciculation Syndrome or Benign Fasciculation Syndrome, you can find out more information about the symptoms of CFS here and here.

I accept the fact now that Cramp fasciculation Syndrome may be an auto-immune disorder because of the huge spike in my symptoms prior, during and after coming down with the flu.  I also often experience a worsening of symptoms just coming up to menstruation and wonder how this could be linked in to the immune response, some experts argue that PMS (pre-menstrual stress) can create a vulnerability in the immune system due to the change in hormones and the build up of toxins ready for release.  This does make some sense to me because my symptoms tend to subside going into menstruation.

I also notice that stress in general aggravates my symptoms and this may also explain why I feel so much worse pre-menstruation and when I am feeling ill.  There is much to be said about the negative effects of stress on our overall well-being, chronic stress has been found to suppress the immune system which in turn can give rise to a number of modern day illnesses that we experience such as cancer and auto-immune illnesses.

So the question for me is two-fold.  What do I do now to alleviate my symptoms and how do I keep on trusting and relying on God when my body wants to play up?  If you’ve researched a little about Cramp fasciculation Syndrome, you’ve probably found that there are different types of pharmaceuticals available to try to suppress or manage the symptoms, back in the day prior to God’s revelation concerning my body being His vessel I was prescribed something to enable me to sleep, but it worked short-term, in the long-term I experienced some negative side-effects.  So I am very adamant on trying to deal with Cramp Fasciculation Syndrome or whatever it is naturally.  I have tried a number of natural supplements including a Spice supplement which cured a previous patient of CFS but it didn’t work for me, I have prayed about this extensively that God will open my eyes to see, my ears to hear and my heart to understand His desire for me in this journey.  I have a few things which I currently do now but will post about them at a later date.

I do believe that God will heal me and this is part of my affirmation, (read the First day of my life) but I really do need the prayer and support of my brothers and sisters in faith to get me through this time.  Hopefully, next time I blog I will have something more upbeat and positive to say.

Update August 2014.

It has taken 6 years to be diagnosed with peripheral nerve hyperexcitability disorder (PNH) and to find out that it is actually an autoimmune condition.  During this time I have learnt how to manage this illness without any drugs and have had some fantastic days being symptom free as well as some rough days, mostly I operate at a 7 out of 10 – I am aiming for 9 by the end of the year.  I have been prescribed anti-epileptics, however since receiving them a couple of months ago I have probably only taken 5, mainly because I would rather not take medication and secondly I am able to do well in the most part without them.  I use diet, natural supplements/herbs and faith medicine to support and heal my body.  Please visit my CFS page to find out my top tips for kicking CFS/PNH where it hurts.

Update February 2017

Since my last update I am happy to say that apart from the sweating symptoms the fasciculations are mostly gone or not noticeable unless I am stressed in some way. I rarely take my medication and when I do it’s usually the minimum or close to minimum dose and that’s only if I am pretty stressed through not being good with my diet (gluten, corn, dairy, chocolate) or have fallen ill but, saying that, I caught a cold this week and I have had very little if any symptoms at all! I take this as a sign my immune system  is settling down and healing and I truly thank God for that.

I share this with you to encourage you and give you hope, when I first started my healing journey I didn’t believe that I could be where I am today. But today I DO BELIEVE and I believe that there is even more to come.  I would focus on building up your belief around healing as that will take your mind off your body and allow it to begin it’s healing process.  I don’t know if you are a man of faith but my trust in the goodness of God has been so important in decreasing my stress load and allowing me to heal.