My Mitochondria results explained

A woman on the Phoenix rising website kindly explained my Mitochondria results in baby terms to me. Here is what she said;


Hi Rosa, i can see now where we talked about your mito results before - it was in your previous blog, sorry i hadnt remembered (brain is not my strong point these days!)
Ive read through your results and they are very very similar to all the others i have read, sometimes minor differences, but essentially ATP (energy) production not working properly, low antioxidant and mineral status and blockages in the translocator protein membrane (the shunt that moves ATP across the membranes in order for the ATP or 'energy' to be used by the body.

Basically your body is not making energy correctly (it is not known why though) which makes you extremely exhausted, you also are not rcycling ATP properly, which the body normally does so you have to make it new, this can take a few days so explains the energy lag with it taking a few days to recover from a minor setback.also you have a low antioxidant status (CO Q10 etc) which will make you feel generally ill, accelerates ageing and causes problems for the immune system. The B12 injections should provide a general immediate antioxidant 'cover' for your body and they were the best thing i ever did - be careful though with the supplements and try then out at lower doses one at a time to see how you go with them. The B12 was too high a dose for me, but alongside the magnesium the best one i have taken ( i self injest B12, but take oral mag) you are also low in other things such as minerals. This could be because of not enough stomache acid, hence low iron as well. Dr M's minerals are now available in spray on form which bypasses the gut and i recommend. I also have dioleins on my TP membranes, but i dont know how to understanf or deal with this, and from your letter and mine im not sure that DR M does either.

Infact our results are very similar - you have less ATP production than me, but i have higher cell free DNA and also some gene blockages on SODase which made my score a bit lower than yours at 25/30 out of 100 on the scale. The scale is i think useful, because it tells you what level of acitivty you ought to be aiming for - usually lower than we think!
I would follow her recomendations for the supplements, especailly B12 magnesium amd minerals, then add in the others slowly - i cant tolerate D Ribose at all as it is too stimulating and affects my hypoglycaemia - but we are all different.

She also wants you to sort out sleep as she sees this as a very important piece for recovery and alongside very strict pacing are the first things to put in place - i do agree with this strongly as most of my gains are lost if i dont sleep well or if i over do things.

She notes that your Thyroid levels are in the low end of bnormal, but says to address that at a later stage (she will probably offer you a trial of thyroxine at some stage)- she also suggests detoxing using FAR sauna ( a type of mat you buy and use to gently warm fat layers to release toxins) once you have other things in place and are feeling a bit better, in the meantime you must drasticalloy reduce your exposure to chemicals such as make up, cleaning fluids etc.
i cant think of anything else right now - i am happy to answer questions or provide my take on things if you need it.
Take care, Justy.

My Mitochondria results

Well I have tested positive for all sorts of problems with my Mitochondria function. Great to have some explanations for my strange symptoms of sickness at last. I even told my Mum 'it was the best news I'd had in my entire life'. Dr Myhill sent us (and my GP) a letter explaining it all but its long and very complicated. I haven't even started reading it yet as reading isn't my strong point atm. However I will start by researching the basic facts about the Mitochondria and slowly build the picture up

One book that looks particularly set to help me with this is 'The biology coloring book'. It has several pages on its structure, how it works, the krebs cycle, etc. Interestingly the anatomy coloring book hasn't half as much info. Perhaps that explains why Drs generally know little about it?

You can buy it from Amazon
www.amazon.com/gp/aw/d/0064603075/ref=redir_mdp_mobile/177-4238557-7439756

Dr Myhill

I have been transferred to a new Dr, Dr Sarah Myhill. She is redoing my Mitochondria tests because apparently Dr Wight, for some odd reason, didn't test them for everything possible.

We finally arranged for the district nurses to come last Tuesday to do blood tests for a few things my local drs should have done 11 years ago and worst of all my Mitochondria ATTP profile.

What frightens me is it showing up clear, no abnormalities. Know that sounds daft but I feel so sick whenever any suggestion is made there is nothing biologically wrong with me. Like trapped. And the thought I could have somehow prevented my past 11 bad years is devestating.

Its daft because I've already had some mitochondria tests which showed abnormalities. Dr Myhill wasn't even bothered about doing this test but my parents wanted me have it to kinda prove to me I was ill

I wish I was mentally ill, least then I'd have a kinda condition. I hate this being niether

Memories, bad dreams and changing names

This is my 2nd blog and my 1st blog entry on this new one 'Space of a ME guinea pig'. No doubt you'll be wondering why I've bothered to go through all the hassle of setting up a completely new blog just to change its name. There are two reasons;

1. I hoped that a blog with more commonly used words would get more hits
2. I wanted to change the CFS/PVFS/ME to just ME

After many years I've decided I like, on the whole, ME as the official name the best. The problem for a long time wasn't sure what the term Myalgic Encephalomyelitis means. Basically its a two words with five parts. My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. ME is the traditional name for the disease, being first used in 1956, whilst CFS wasn't used till sometime in the 70s/80s.

ME  is a debilitating neurological disease initiated by a virus; an enterovirus. The 'ME' part of my condition was almost undoubtably caused by an enterovirus and was certainly pretty debilitating! I did suffer from neurological muscle pain as well. For a while I actually preferred the term PVFS because the condition is so often caused by a virus but now I've learnt that ME is also classed as a condition caused by a virus I've warmed to it.

I found out most of this from http://www.hfme.org/

I had no less than two bad dreams last night. The first one I can't remember; the second was a weird dream made up of memories of when I was little. A male district nurse was the main figure in it. He was very eccentric and dressed up as a teddy bear. The district nurses are two of the few people from those times that I remember with any degree of warmth though they were female.

Dr Wights tests have stirred up memories of those times for me, mostly not very happy ones. They have changed the way I remember them though; before my grief was always mixed up with guilt when I remember how ill I was. In spite of the fact my family and friends have always believed I was genuinely, physically ill there was always a small nagging part of me that held onto the abuse I'd been through and couldn't shake off the nagging doubt that I had had some control over my illness in some way. Since the tests and the recent research findings I've started to believe I was genuinely ill though and to regard it as just one of those bad experiences people go through in life. Like getting divorced or miscarrying or having cancer. Strangely thinking this has lessened my grief too

shampoo

I've recently been diagnosed with glycolic acid ( from shampoo/hair products) on the translocating protiens of my mitochondria cells. This is very unusual; My new Dr who is an ME expert, miles away, and has tested many people had never seen it before. I thought it was a bit unfair; I only wash my hair twice a week, never use fake tan and rarely wear make up and I get to have this unusual weakness when the rest of my peers are smothering themselves with no side affects!

Stranger still I wouldn't have said fatuige was a major part of my CFS, I'd always scoffed at the idea of CFS being something to do with the mitochondria; I thought it must be something much more complicated. I'v relapsed since last Summer, not back to what I was like before that fortunately, but it affected my sleep badly. I got insommnia which then had an affect on my energy and concentration levels, I suffered from dizziness, headaches, lack of appetite, weakness and mild light and sound hypersensitivity. I wear ski sunglasses my Grandma kindly gave me all the time now and often have to have the voloume on my iPod dock right down

Basically what it means though is this is stopping me from tranferring energy round my body properly and fortunately there is a treatment that can help. Dr Wight got back in touch with the lab that did the tests as he'd never seen it before and they told him that infra-red saunas often helped people with such complaints.

So Mum got online. The 1st company she looked at were selling proper saunas and she got very excited at the thought of getting a double persons one and having sauna parties. But just as I was wondering how to put her off, she found another company selling cocoons (above link). Apart from the advantage that a cocoon would take up less space, this company also offered a support service so you could pay for advice