The shot gun approach- mitochondrial/ methylation/ antoxidants

Thanks heaps.
i do take neo b 12
it is only 6 dollars for 3 ampoules with a script and HCC though

Really helps with sleep no doubt
RDNS comes and gives it to me at home if i am not well enough to get out

I am really thinking though that standing up or being upright causes all my problems
if i stay horizontal my symptoms disappear
and being upright brings them on

Glad its helping u some, just need to get u to improve in other areas too. I have backed off the ribose and creatine, i was only using them when i was exercising but of late havent had any high enough energy levels to get back exercising regularly. Im still using q10, acetl carnitine etc.

cheers!!

Anyone here on Freddd's protocol who has tried CoQ 10?
I read that some were having issues with blood pressure with it.

Hi Thanks Heaps, I am thinking of cutting back the creatine too.
May try going off th ed ribose now for a while
all it did for me was stop muscle aches so i will stop and wee if they come back
and yes if i start more exercise i will go back on them

this may not be the place to post this but here goes as i find this site a bit hard to navigate.
My specialist thinks it may all be due in my case to " stretchy veins " in the Ehlers Danlos (EDS) spectrum
so that when i stand up i get inadequate blood to the brain
(yesterday my BP dropped 20 points in a minute when i stood up - from 125 to 105 systolic
but then returned to 125 within 5 mins) so adrenaline must have kicked in quickly
this instant adrenaline release happening constantly may be the cause of many ofl our problems
(possibly leading to low Cerebral spinal fluid levels too which exacerbates things further)
maybe a high protein diet helps as it helps build collagen to strengthen the veins
IM Vit B12 increases blood volume so may help because of that
certainly since he suggested this i have been observing my position in relation to symptoms and noticing a definite correlation
eg. resting sitting up does me no good so it is not the resting that helps but the lying down
yes i am ill after being upright- no exertion needed
and i am better after a day or two lying down
and it would explain why we have an energy boost sometimes for no apparent reason...eg in the evenings or early mornig.. after lying down for 6 hours or so all day or night
not wanting to be over simplistic here but would love to know if anyone has researched this aspect of the illness or if anyone else has observed this vcorrelation between posture and symptoms
years of constant adrenaline boom crashes - and resulting in blood sugar boom crashes too - would take its toll on anyone.
It should be easy to test and even predict crashes according to your position... and yes I know for sure that a certain amount of time spent upright ...even sitting up in a chair doing nothing... will cause me to crash, while after about 2 3 day slying flat my symptoms will improve or even disappear
Not so easy to stay lying down and survive let alone live a life.
Would love to hear everyone’s thoughts on this
at a recent EDS conference it seems the list of symptoms closely overlaps ours...

cheers
Ally

not sure but Dexamphetamine sure sounds like what use to be called Speed, Dexies, Uppers. ...did give me energy, kept me awake but made my brain feel like it was plugged into a power socket.

Yes it is a lose dose f speed I believe.
It had th same effect on me ROxie, and then I crached hard the next day.
Sme thinghappened the second and last time I tried it.

I suppose i will save it for emergencies for when I really need to get up andI can't.
eg a doctor's apponntment - my main outing nowadays.

Yes, please be very cautious with that Allyson. Do you believe the Dr that prescribed that for you is really trying to understand what is wrong in your body or just throwing meds at you to get you out of their office? I hope it is the former.

Speed is methamphetamine, not dexamphetamine. Meth is definitely bad for your health. Whether dexamphetamine is neurotoxic or not (at therapeutic doses) is still up for debate. If you need a stimulant drug, methylphenidate would be a safer option.

thanks for that Adreno; has it got another name -a commercial name for example; I have never heard of it.
Is it just as good to have half a cup of coffee do you think? I rarely drink it but enjoy it so if I had to take a stimulant i feel i may as well take something i enjoy instead of a tabetl?
cheers

Yes thank Roxie; i think it works for some people; I do not like the feeling and have not been convinced that is is helpful apart from giving a brief burst of energy- that you pay for later.

If you are talking about methylphenidate, the commercial (brand) name would be Ritalin. There are also generic options.

Methylphenidate is more effective than coffee for ADHD, I also find it a less jittery experience. But it also induces a kind of hyperfocus (I call it mental tunnel vision) which makes you feel like you're in a cheese bell. Overall, I prefer the coffee