I would like to open by saying thank you to the Phoenix Rising community. My experience with ME/CFS has been long. My lowest point found me splitting up my family and moving in with my mother so she could look after me and my youngest son. My husband and older son stayed in another state so my son could continue at high school. Being a mum with CFS is tough as I'm sure many of you would know. Throughout the years I would always turn to Phoenix Rising for hope. Reaching out on my laptop so lonely, stuck in my bedroom, I could tap into the hope contained here. Looking for the next 'thing' to try.
It would be impossible to summarise the steps in my treatment here but I think most of you would be familiar with them. I was seeing Dr Don Lewis in Melbourne (Australia) and Dr Monica Henry in Tasmania (Australia). I was able to get back to a functional level. By this I mean caring for myself and my family with regular return to bed if I over did things - probably 1 week per month on average.
The turning point came for me when my husband got a new sponsor. He's an athlete who has a blog and competes regularly in multi disciplinary sporting events. His blog raised $7,000 for our local ME/CFS support group. His new sponsor make pure amino acids. He was telling me about them and put it to me they might help.
I started taking very small doses mixed into water, very wary I might react. We all know we need to be very careful when starting new programs. I started taking 1/4 teaspoon of Creatine and Glutamine and about 1/8 teaspoon of Beta Alanine. I seemed to be tolerating them well so I gradually increased the dose and added in Vitamin C, Herbs of Gold Magnesium powder and 1/2 teaspoon of high quality biodynamic sea salt. This also had the added benefit of making them taste better! The amino acids produced by Australian Protein Supplies are pure with nothing else added to them so they taste awful but great for us as there's no added anything else.
I haven't had a day in bed for over one year now. Amazingly I'm also able to exercise. Interestingly as long as it's supported exercise I'm ok. By this I mean bike riding and swimming. I still really struggle to walk too far. The icing on the cake - I am able to work a couple of days a week.
I must emphasise its not just the amino acids. My base level programme that I've been on for many years now includes:
Slow K - Potassium (I lose large amounts of potassium in urine - found on a 24 hour urine test).
I eat small amounts often as my glucose tolerance is poor.
I'm intolerant to fructose and lactose so I keep these low in my diet.
I take flaxseed oil several times per day and zinc at night time.
I take a tiny dose of Clonazepam at night for sleep. Well down from the huge dose I needed at my sickest.
Magnesium and vitamin C as mentioned above.
I rest whenever I can and try to keep stress and anxiety at a minimum.
Everyday I'm aware that CFS is there but I think I've managed to control it the point of regaining my quality of life. My hope is this information might help you too.
It would be impossible to summarise the steps in my treatment here but I think most of you would be familiar with them. I was seeing Dr Don Lewis in Melbourne (Australia) and Dr Monica Henry in Tasmania (Australia). I was able to get back to a functional level. By this I mean caring for myself and my family with regular return to bed if I over did things - probably 1 week per month on average.
The turning point came for me when my husband got a new sponsor. He's an athlete who has a blog and competes regularly in multi disciplinary sporting events. His blog raised $7,000 for our local ME/CFS support group. His new sponsor make pure amino acids. He was telling me about them and put it to me they might help.
I started taking very small doses mixed into water, very wary I might react. We all know we need to be very careful when starting new programs. I started taking 1/4 teaspoon of Creatine and Glutamine and about 1/8 teaspoon of Beta Alanine. I seemed to be tolerating them well so I gradually increased the dose and added in Vitamin C, Herbs of Gold Magnesium powder and 1/2 teaspoon of high quality biodynamic sea salt. This also had the added benefit of making them taste better! The amino acids produced by Australian Protein Supplies are pure with nothing else added to them so they taste awful but great for us as there's no added anything else.
I haven't had a day in bed for over one year now. Amazingly I'm also able to exercise. Interestingly as long as it's supported exercise I'm ok. By this I mean bike riding and swimming. I still really struggle to walk too far. The icing on the cake - I am able to work a couple of days a week.
I must emphasise its not just the amino acids. My base level programme that I've been on for many years now includes:
Slow K - Potassium (I lose large amounts of potassium in urine - found on a 24 hour urine test).
I eat small amounts often as my glucose tolerance is poor.
I'm intolerant to fructose and lactose so I keep these low in my diet.
I take flaxseed oil several times per day and zinc at night time.
I take a tiny dose of Clonazepam at night for sleep. Well down from the huge dose I needed at my sickest.
Magnesium and vitamin C as mentioned above.
I rest whenever I can and try to keep stress and anxiety at a minimum.
Everyday I'm aware that CFS is there but I think I've managed to control it the point of regaining my quality of life. My hope is this information might help you too.
