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my result...

my result...

Well after three minutes or so it looked like this – not actually a colour on the chart! it had changed colour a lot from yellow/orange to more like a pale version of the very dark positive colour (which, after a few more minutes, it turned into but they are very clear that only the result at 3 minutes counts!) so i think it is a “moderate positive”.
This is what is says on the leaflet:
The Neurotoxic Metabolite Test aims at detecting the presence of abnormal metabolites in the urine. These metabolites are related to the production of hydrogen sulfide (H2S). Although H2S is naturally present in the body, and plays some normal physiological functions, an excess production can be very detrimental. Overproduction of H2S may result from metabolic dysfunctions, but also from the overgrowth of certain bacteria in the gut (alteration of the normal intestinal flora = gut dysbiosis). Our preliminary results indicate that a strong proportion of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) patients present such dysbiosis, and test positive with the NMT test; but positivity may be associated with other conditions, related to intestinal dysfunction.
So it is not really a test for ME as the papers and hype suggested then, is it? BUT, if it leads to treatment of some aspect of our ill-health, it can only be a good thing and may improve quality of life… if it turns out it is the complete answer for some people, all the better.

Here is the article: new urine test for ME in the Telegraph  http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html 

here is what the ME Association say about it: http://www.meassociation.org.uk/content/view/875/161/ 

I wonder if my diet and probiotics/Kefir regime have been helping my gut problems and perhaps have affected the result. I did stop taking the Kefir and probiotics a couple of weeks ago, although i continued to eat soya yogurts that have “yogurt cultures” in them as i thought they probably are not that potent and also i didn’t know how long it would take for the test to come and there are some things i can’t live without for long on my limited diet! My digestive “issues” have been so much improved over the last few weeks/months since i changed my diet – i wonder what the result would have been a few months ago!

All in all i am pleased that i do not seem to have a  “strong positive” result as no-one wants their body to be toxic do they!? I am going to keep up with the probiotics and hope that that can help. I don’t really see the point in going to my doctor about it – i know they won’t be able to do anything as the research is not even tested/published/recognised yet. I think i might have if it was a very positive result, just to see what they said. I may mention it to the POTS specialist when i see her next week – if i remember – as she is at least interested in ME issues and listens…

I am also going to look up “metabolic dysfunctions” which the test company also say can lead to a positive test result… i don’t know exactly what this means!

After going to my sister’s wedding and then having the “virus from hell” just over three weeks ago, i have been really struggling… (not that i wasn’t before you understand!) BUT i finally feel a bit better the last few days – back to a level that i can live with longer term – anything less than this is just not do-able. It may only last a few days but it is nice to feel that each day is a bit easier, not that i am actually doing much, but being is easier. It makes me realise how hard things have been when this feels so good! Just a few days ago i was feeling very different, and everything felt like a real struggle but i am enjoying the upturn while i can. So, despite continuing muscular pain and headaches, i am feeling quite positive.

Due to being otherwise engaged i was a bit late starting on my Just Four Quidactivities, but last week i managed to get my JustGiving pages set up and then email everyone i know to tell them about it. I optimistically set my target for the year as £250 for each of the two charities (as you have to set a target) but i did not think that i would make it in a month of Sundays…

Amazingly i have already exceeded my target for the Ramsay Research Fund and my ME Research UK page is starting to look at bit better after my Dad thought it needed cheering up and made a second donation! So far I have raised £450 in total and I am so chuffed and so grateful to everyone and their generosity. I really thought that a few people would give a tenner (which would have been great), but i have had some HUGE amounts given. I really means a lot and has cheered me up hugely to think that something so great can happen from a relatively small action on my part – all i did was ask! True, i cannot run a marathon so should not be expected to “do” anything like that and also i would not be comfortable asking again and again for money; but i am so surprised and encouraged that my small actions have created some money and potential positive change for the future for people with ME.

I would encourage anyone who has some family/social contacts but who doesn’t think that there is any point, to give it a go, you may be surprised who donates, as i have been. If they don’t, well it doesn’t matter – you gave it a go! I think it maybe makes some people feel good that they can do something useful/practical to demonstrate support for me and my situation when there is nothing much left to say, although maybe i am reading too much into it.

If it is energy issues preventing you, then feel free to base your justgiving pages on mine (see the links to them on the left of my blog) and i will send you a copy of the email i sent round to people too if that helps (just ask). Thinking what to say can be the most time and energy consuming part.

So anyway, it is nice to have good news!

More good news is that i have booked a few nights in Scarborough again to the same place i have been before. Last week i was thinking there was no point as i wouldn’t be able to leave the hotel, the travel would be a trauma etc etc but this week i feel that it is do-able and that i won’t have a good time if i don’t give it a chance. SO let’s hope this better feeling last until i go in a month’s time!

Last time i went i only left the hotel once for a cuppa on the harbour front, but i was only just starting to take Midodrine then and my POTS symptoms were a lot worse. Although i still feel bad when i stand for any length of time, i am not living in fear of imminent collapse as much these days and can stand and walk for longer (as long as i am generally feeling ok – some days or times of day there is just no point trying is there?). Also that was December and this will be July so i hope to be able to sit in the park, on the sea front etc and be outside a bit more in a gentle and relaxed manner without freezing myself half to death! So i am looking forward to a summer holiday. It may not seem exotic to others but it is as far as i can possibly venture these days, and it is MINE!

Other news is that i have ordered the urine test “for ME” (see previous post) and am stopping taking Kefir from now until it arrives as probiotics can apparently affect the results… so we shall see if i have ME ha ha ha.

Photo677I bought some Kefir “grains” a while ago (see them pictured above). With them you can make a kind of cultured milk which is full of healthy bacteria (like probiotics) and is meant to be very good for you. As i have been having a lot of trouble with my digestive system i thought i would give it a go when someone else with ME told me about it…

I would say it has been a bit of a bumpy ride, but that i am gradually finding a good relationship with my Kefir (well it is a living thing!).

The first problem is that it was quite cold weather when i first got my Kefir grains, and they were small. They need a warm place in the house to be able to “grow” in the milk (it takes a lot longer at cooler temps). An airing cupboard is recommended – we don’t have one. I think the Kefir was not fully active when it first arrived and that with the cool temps meant that nothing much seemed to happen.

Secondly i don’t actually like milk. Not the cow variety anyway. Kefir lives in dairy milk but i don’t like the taste and have long consumed soya milk instead. I eat cheese and used to eat yogurts (have not reintroduced them yet since my strict IBS diet as soya yogurts are so nice!) but hate warm yogurty smells. Milk Kefir is slightly soured/cultured milk and so not to my taste. I have been using soya milk to make it but it does involve keeping it fed in dairy milk every other batch to allow the grains to grow/stay alive as they cannot thrive in soya milk and would eventually die if only used with it. So i have been throwing a lot of cultured cow’s milk away which i don’t really like to do but even when holding my nose i cannot force it down! (I did try).

Good news is that with all that cow’s milk the grains have grown in size and are now happily producing me soya milk kefir on a regular basis. This tastes fine usually (not a lot different to soya milk but it goes thicker a bit like a soya yogurt or pudding – a bit like slime but it slides down!). I do have to be careful not to leave it too long as it can go fizzy which makes it less palatable, although from what i have read it is still fine to consume. The time this takes depends on the temperature, the size of the grain and the amount of milk so it is hard to judge.

I don’t know if it is having any positive effects on me; my IBS symptoms have certainly improved with my dietary changes and i have also been taking other probiotics so who knows. If what i have read online is to be believed Kefir is very good for us so i will carry on for a while and see what happens.

It is a bit of a hassle and i do end up throwing a lot away (both the cow’s milk and any that gets too fizzy etc) but i am also consuming quite a lot with no obvious negative effects. It does create some washing up too but i don’t usually have to do my own so that’s ok!

I am not sure i would recommend Kefir yet, as i feel i have a bit more experimentation to do to get reliably nice Kefir – i feel i must be missing something as i only like the flavour if it is not too fermented – as soon as it starts to separate (the soya milk – i have not let the dairy kefir get that far!) it tastes horrible to me… but i am carrying on for a while longer to see.

When i read about the new urine test for ME in the article in the Telegraph  and saw it partly seems to be related to gut bacteria & probiotics http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html i thought well at least that backs up that Kefir is worth a try. I do not know if this is the “key” to ME as they are claiming, but it may be a factor – we shall see what further research and trials bring… here is what the ME Association say about it: http://www.meassociation.org.uk/content/view/875/161/ 

I have emailed the company to ask for a test, but have not heard back from them (expect they have run out by now!). I thought it may be interesting to know if those processes/problems were part of my illness and to “test the test” and see if it mirrors the severity of illness i think i have, with the result. Will let you know if i ever get my hands on one.

Kefir Info:

This website has A LOT of Kefir info: http://users.chariot.net.au/~dna/kefir-faq.html#soymilk and is a little eccentric too! (kefir in space?)

http://crystalcultures.co.uk/live_cultures.htm describes Kefir:

Milk Kefir

Kefir is such a balanced and nourishing food that Regular use of Kefir can help relieve Most intestinal disorders, Easily digested and It cleanses the intestines Reduce flatulence and create a healthier digestive system it Provides beneficial bacteria and yeast Vitamins and minerals and complete proteins It contributes to a healthy immune system.
Kefir can also help eliminate unhealthy food cravings by making the body more nourished and balanced. Its excellent nutritional content offers healing and health-maintenance benefits to people in every type of condition.

Lactobacillus Caucasus, Leuconostoc, Acetobacter Streptococcus species.
Beneficial yeasts :
Saccharomyces Kefir Torula Kefir
These eliminate destructive pathogenic yeasts in the body by forming a Controlling Agent That Toughens the intestines. The body Then becomes Better at resisting such pathogens as E. coli Salmonella and intestinal parasites. Kefir’s active yeast and bacteria provide more nutritive value than yogurt by digesting some the foods that you eat and by keeping the colon environment clean and healthy. Its cleansing effect on the whole body helps to establish a balanced inner ecosystem for optimum health and longevity. Because the curd size of Kefir is smaller than yogurt, it is also easier to digest, which makes it a particularly excellent, nutritious food for babies, invalids and the elderly, as well as a remedy for digestive disorders.

ME/CFS Awareness

ME/CFS Awareness

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