Discussion in 'General Treatment' started by heapsreal, May 29, 2012.
What is that?
I would definitely like to hear any updates you might have, Allyson. My doc prescribed me dex, too, maybe a year or so ago (b/c, you know, we're all just fatigued b/c we need more amphetamine! Lol), but I've always been afraid to take it. Seems a bit counterintuitive with adrenal problems - was always afraid of crashing bad afterward - but who knows, a lot of the imbalance might be transmitter related, and perhaps something like dex could help adjust that in low doses w/out crashing the system. Thx 4 the info.
Are those the energy type things? I would not take those. Just supplements have helped my CFS thankfully.
yes I think i did crash and burn withteh dexamphetamine Jeffrez; I feel back to "normal" now - ie happy ....but doing nothing physical - and slept well last night after some IM Vit B 12 and increasing my creatine back to 6 caps 3 times a day; I really feel the creatine is helping me more than anything so far ...and waking feeling like I have slept is wonderful!
My doc did say you can just use the dex to get through something when need the energy - eg an appt you HAVE to make; hoever I will watch next time i take it and see if it happens again.
Re sleep - i have been saying drinking hot water helps me get back to sleep but last night i had only cold water by the bed when i woke up; well drinking a cup of cold water certainly woke me form drowsy to wide awake and made it harder to get back to sleep so I am sticking with the hot water in the middle of the night from now on as I note that hastens my return to sleep- oh I take l thanine then too if i wake withthe hot water.
yes that is the brand and type i was buying in capsule form thanks Rusty - i will now switch to powder
I note iherb has free shipping til 31 st July too
and iherb is very reliable
Have you considered one of the many herbal teas that help with sleep? You could brew it before you go to bed, then heat it in the microwave when you wake up. Drinking some before you go to bed might, or might not, prevent the waking during the night.
Thanks for that comment on Dr Teitelbaum saying it may take more then 2 weeks to take effect in some people.
When I tried it and had it helped nothing at all, I tried it for only 5-7 days as I was expecting if it was helping, to be feeling its benefits quick.
So maybe I just didnt trial it long enough. I may give it another go at some point.
Although it's far too early, I think D-ribose is helping with PEM. I went to the movies 2 nights ago - Batman - and usually have quite a bit of disorientation and fatigue afterwards, and in particular a great deal of trouble driving home (usual things like visual info not being processed in brain, failing memory and rising panic as a result - imagine trying to drive blindfolded on a formula one track). I also usually get the feeling I am outside my head. I was considering giving it away.
To my surprise I felt much better than previously. The effect was quite subtle. I haven't noticed any general energy increase, and still have PEM. But I believe it improved at that one test point by at least 50%.
Thats what i have noticed from it rusty, reduces PEM, not neccessarily increasing energy, probably indirectly as one isnt always recovering from PEM.
Hi heaps, I recall last week you saying you ran out of D-ribose and had some regression. Be interesting to see if you can duplicate any benefits when you get back into it.
ordered more ribose yesterday, hopefully get it next week. Taking longer to recover from exercise and dont have as much energy when exercising. Doing well outside of exercise.
Im hoping the ribose makes a difference, i have ordered 2 tubs, 50- 5mg serves per tub so will use 2 serves a day for a week or so then back off to 1 serve a day and see how it pans out. 1 serve a day would be better for the wallet.
Dribose is good for that and lcarnitine, Coq10. I think you are on those. Good luck, hope it helps to be on it again. I take it twice a day.
rusty heaps and sally,
i dfind when i increse my exercise i need or d ribose; the same effects you are noting for d ribose i get for creatine and also the increaswe in alcar and glutaine sees to be helping - not a wonder cure but i feel better generally and coping better
I would still like to try saline iv infusions and regular oxygen
to hell withdouble blind trials - life is too short; if they help you they help you and they help some people that is for sure
i have been back on ribose for a week or two now. Still on creatine and other mito supps, q10, acetl carnitine, lipoic acid.
I think the ribose is having an effect, seem to have more energy when exercising but i dont really notice energy increases from it in daily living stuff.
i missed my b12 shot for a month and then when i had the next one i really felt a boost in energy so I have increased them ot weekly now; am getting rdns to come and give them for when i can t make it to my docs before 3pm for a shot.
my haemoglobin is high -anyone knwo why this would happen in ME?
shows its helping you. Are u able to do your own shots?
There is a compounding chemist i just found in australia that makes methyl b12 10mg/ml in a 10ml vial for $45. half a ml twice a week would probably work well.
I was thinking of giving it to myself sub cutaneously as well as the IM shots; never done it but seen heaps of diabetics do it so i should be able to
read somewhere here recently that sub cut ones last a litttle longer - slower delivery which makes sense
If i really can t make it i can call a home visiting doctor to give it, but RDNS are going to come fortnightly
I will make an effort not to miss it now i know it helps
i just take the standard cynacobalamin which is about 6 dollars with a script - $16 to buy over the counter
They generally recommend hydroxy instead of cynacobalamin. You can buy them from chemist warehouse without a script 1000mcg/ml x 3 for $12.
Only need a small gauge needle say 25gauge and inject into the upper outside of thigh. That size needle will generally be subcut as its too short to reach the muscle tissue. An open hand width from the knee is generally high enough up the leg. Next time you see your doc, get him to talk you through doing it yourself, once over the fear of it you will wonder why u bothered driving all the way to the docs just to get an injection.
I think Dr. Myhill has zeroed in on important information about the mitochondria damage. I am in my third serious relapse since my initial bout with it in my late 20's (A type personality) (am am now 67). Wasn't sure I was going to make it this far but i did!....I am trying the Di-ribose and am going to purchase the creatine and add the other suggested items she has suggested as my budget allows.....
But the point I want to stress in corrilation with Dr. Myhill. The suppliments and diet SUPORT the HEALING of the mitochonrial damage which TAKES TIME. Like a broken leg.... So allow your body to heal with all the support you can give it and the time neccesary......which, in our instant minded society is it's own additional challenge. I tried to have a life and pushed too far too often... and had to suffer greatly.!!! Thankfully now there is SO MUCH MORE knowledge and acceptance that it is a real and debilitating illness. When I first came down with it, no one understood it or cared to really listen and just brushed it off as "it's all in your head". A relative stated that to me the other day. Needless to say, I will not be discussing my illness with her again....
All my best to you all who have traveled this challenging road....hopefully we have learned many life lessons from it.
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