May 5th, 2012
ME.
It's been a while.
I thought I really should mention the current list of Vitamins and drugs I'm taking for my Myalgic Encephalomyelitis: Always slightly changing, adding or subtracting, but...here:
General Health and Energy
(Along with a healthy, low GI, hi carbs, protein and vege diet (organic now) consistent with the Fructose Malabsorption diet as diagnosed, as well as very low dairy, and other tested allergens elimated (egg, tuna))..
--Vitamin B12 concentrate (injected, first thing in the morning). I really notice if I go without this. Brain-fog and lethargy increase markedly. This targets the oxidative stress cycle proven to be key in ME and other Neuro-Immune disorders.
--Metafolin
--Vitamin E (500iu)
(These 3 work together to target the severe oxidative stress issue, the Methylation cycle.)
--CoQ10 just started. (now 1 x100mg building up to 300mg a day) which aids the mitochondria, or energy machines inside cells. Should have started this a while ago, but didn't as I was up and down like a yo-yo way back when, and trying out something else. One new thing trialed at a time, only!
--Hypo-multivitamins (Ecological Formulas, without metals). Just read elsewhere I should probably swap around with others so as not to be vitamin heavy with some and light with others...hmm for trial another day!
--Potassium (or 'Duro K'- slow release, with meals). This aids my cells poor ability to transfer sodium and potassium across cell membranes, basically keeping them healthy and 'plump' like Gatorade.
--Lamyctal or lamotrigine. This also helps 'channelopathy' the proven inbalance of ions means that the 'gates' in the cell walls need opening more. This drug is supposed to do that.
--Quality fish oil. But honestly I've been incredibly slack with this lately and don't notice huge differences. I really ought to stay strict and regular! But oh the cost...
--Probiotics: swapping between SB Floractiv one day (gut healer) and mutaflor along with lactic acid VSL3 shield probiotics.
--Aquaforce electrolyte drink. This gives me most energy when feeling faint or low in sugar/salt (yes my body talks to me), and I take it with me everywhere, especially when out! Auto blood volume increase and blood flow every time!
For sleeping:
--melatonin drops (about 4). This is based on pure science. A saliva profile revealed that I've got almost no melatonin at night and normal cortisol levels.. every ME suffere is different on this, but clear-cut results makes it easy to swallow (pun intended).
I rotate several drugs each 3 nights so by body doesn't get used to one concoction, which it does if I keep it the same. So:
2 nights per week
--Rivotril (clonazepam) 1.625mg (I'm weaning down slowly- it's addictive!)
--Stillnox 1 x10mg (Zolpidem)
1 night
--Doxepin (a commonly-used antihistamine) instead of the stillnox- taken earlier on in the evening. This really knocks me out for a good night's sleep if most other variables are sitting right. Slightly drowsy next day, but so worth it.
ME.
It's been a while.
I thought I really should mention the current list of Vitamins and drugs I'm taking for my Myalgic Encephalomyelitis: Always slightly changing, adding or subtracting, but...here:
General Health and Energy
(Along with a healthy, low GI, hi carbs, protein and vege diet (organic now) consistent with the Fructose Malabsorption diet as diagnosed, as well as very low dairy, and other tested allergens elimated (egg, tuna))..
--Vitamin B12 concentrate (injected, first thing in the morning). I really notice if I go without this. Brain-fog and lethargy increase markedly. This targets the oxidative stress cycle proven to be key in ME and other Neuro-Immune disorders.
--Metafolin
--Vitamin E (500iu)
(These 3 work together to target the severe oxidative stress issue, the Methylation cycle.)
--CoQ10 just started. (now 1 x100mg building up to 300mg a day) which aids the mitochondria, or energy machines inside cells. Should have started this a while ago, but didn't as I was up and down like a yo-yo way back when, and trying out something else. One new thing trialed at a time, only!
--Hypo-multivitamins (Ecological Formulas, without metals). Just read elsewhere I should probably swap around with others so as not to be vitamin heavy with some and light with others...hmm for trial another day!
--Potassium (or 'Duro K'- slow release, with meals). This aids my cells poor ability to transfer sodium and potassium across cell membranes, basically keeping them healthy and 'plump' like Gatorade.
--Lamyctal or lamotrigine. This also helps 'channelopathy' the proven inbalance of ions means that the 'gates' in the cell walls need opening more. This drug is supposed to do that.
--Quality fish oil. But honestly I've been incredibly slack with this lately and don't notice huge differences. I really ought to stay strict and regular! But oh the cost...
--Probiotics: swapping between SB Floractiv one day (gut healer) and mutaflor along with lactic acid VSL3 shield probiotics.
--Aquaforce electrolyte drink. This gives me most energy when feeling faint or low in sugar/salt (yes my body talks to me), and I take it with me everywhere, especially when out! Auto blood volume increase and blood flow every time!
For sleeping:
--melatonin drops (about 4). This is based on pure science. A saliva profile revealed that I've got almost no melatonin at night and normal cortisol levels.. every ME suffere is different on this, but clear-cut results makes it easy to swallow (pun intended).
I rotate several drugs each 3 nights so by body doesn't get used to one concoction, which it does if I keep it the same. So:
2 nights per week
--Rivotril (clonazepam) 1.625mg (I'm weaning down slowly- it's addictive!)
--Stillnox 1 x10mg (Zolpidem)
1 night
--Doxepin (a commonly-used antihistamine) instead of the stillnox- taken earlier on in the evening. This really knocks me out for a good night's sleep if most other variables are sitting right. Slightly drowsy next day, but so worth it.
Stuff I'm yet to try and want to:
--Magnesium. Apparently it helps sleep and many other things.
--General Naturopathic Treatment. I want to get into the herbals if there's something to help!
Stuff I tried but didn't keep up:
--L-Glutamein at night. My doc says it's helpful but didn't really explain why very well, and I've not noticed much difference.. plus it's really expensive.. but I've got leftovers and now am reading about glutathione and ME..so maybe I'll try again?
15/9/2011
It's 1 week since I last saw my exercise physiologist (EP). An EP is a relatively new profession- comprising a more detailed understanding of the physiology and science behind exercise, and how exercise in particular can be used to treat a whole range of illnesses, including ME! For example, one tip he has told me is that I am best to do strength exercises that do not involve standing upright (or least minimise these) as these use more energy for the heart to pump blood up and down the body, than if lying or in a more horizontal position. Cardiac exercise (like swimming or walking) uses more aerobic respiration (uses up more oxygen and energy) than other types (eg anaerobic- eg muscle strength exercises like pushups).
Interestingly, he has pulled even my strength exercise back to 5 repetitions of several strength exercises, twice a day. I was doing more than this, but still crashing if I go out etc, so it seems he is wanting to allow more energy for other activity as well as the exercise. I hope this works, because I don't like the idea of deliberately getting less strong! But hey- if it means I crash less, this could really work. So I'll update here how it goes.
I am pretty sure he is learning about exercise and ME (note the dumb pun) just as much as I am!
There is a study that has been recently done (note: with a very small sample size) looking at muscle acidosis (build-up of lactic acid after exercise). A scientific blogger has summarised it and linked the actual study here. The results show that there are variations in how ME patients respond to exercise- in terms of the physiology and of course mentions the reduced capacity we have to bounce back after exercise. So try to treat that!! Well my EP is. Good luck to him! No, actually I pray for him:) Obviously greater samples are needed, with more in-depth analysis.
Meanwhile, I will continue to try and maintain muscle tone and strength regularly, without over-doing it, and after 2 weeks of stability, slowly build up (by 1-2 reps for strength) whilst doing the same with my respiratory/aerobic fitness by walking/dancing (aerobic-2 mins increase, the one that uses up more energy!).
Watch this space!
Aug, 2011.
Now I officially say that I have ME: Myalgic Encephalomyelitis. NOT Chronic Fatigue Syndrome. It's what the World Health Organisation now calls it. And it gets rid of the idea that we're 'just tired a lot', like with 'chronic fatigue'.
Read all about it here.
Officially it's a neurological and immune problem. It's not just in our heads, officially! But it IS in our heads in another way- in that our brains are also affected. But not psychologically. It's actual nerves and physical sections! The dorsal root ganglia. The hypothalamus. It's worth a read if you want to know more.
It's a day to be celebrated on behalf of all those who have suffered from peers and the health profession from years of disbelief and misunderstanding of their true plight. I truly take my hat off to these people. I hope this comforts any of you who have experienced this who might be reading this now!
