The shot gun approach- mitochondrial/ methylation/ antoxidants

[Sallysblooms]

What is that?

 

[jeffrez]

hmmm just remembered I started on Dexamphetamine the other day too so may be that had something to do with feeling cured. i only took it fo one day as I fear the crash and burn it may cause and I wanted to see how the creatine was doing but relise i had left it out of the picture; i will stay off the dexamphetamine for a while and give the creatine a go then reintroduce it later if still needed.

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.

 

[Sallysblooms]

Are those the energy type things? I would not take those. Just supplements have helped my CFS thankfully.

 

[Allyson]

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.

 

[Allyson]

y

Hi heaps, I can't see any shipping costs on this site. iHerb seem to have pretty good shipping prices. Creatine has me intrigued. May give it a go.

I note NOW creatine at iHerb is not too bad at $21: http://www.iherb.com/Now-Foods-Sports-Creatine-Monohydrate-100-Pure-Powder-2-2-lbs-1-kg/535

Unless other supps are cheaper at Beyond, I still think it might be cheaper at iHerb when you bundle everything in the one order, shipping cost-wise, I mean. I will check other costs out.

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

 

[Little Bluestem]

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.

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.

 

[taniaaust1]

D ribose actually takes about 2 weeks to take effect in some people ac to dr teitelbaum,
For me, I noticed the effect within two days and take it all the time now
Apparently it gives some people more energy; i have never noted that effect on me alas, wha t i got was relief from the constant muscle aches all over my body, so I take it for that.

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.

 

[RustyJ]

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%.

 

[heapsreal]

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 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.

cheers!!

 

[RustyJ]

Thats what i have noticed from it rusty, reduces PEM, not neccessarily increasing energy, probably indirectly as one isnt always recovering from PEM.

cheers!!

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.

 

[heapsreal]

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.

 

[Sallysblooms]

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.

 

[Allyson]

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.

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

 

[heapsreal]

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.

 

[Allyson]

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?

 

[heapsreal]

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.
http://www.custommedicine.com.au/shop/products/Methylcobalamin-Injection-10ml.html

 

[Allyson]

Well Heaps,
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

 

[heapsreal]

Well Heaps,
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.
http://www.chemistwarehouse.com.au/...ucts&terms=hydroxocobalamin&stype=NP&expand=0

cheers!!!

 

[YvieArtist]

Alex from here used a shot gun approach a few years ago and had some success, but used a few different supps, i think from memory and had some side effects.

I dont think this is really going to cost too much when buying from iherb, maybe abit of an initial outlay but most supps will last 2-3 months , approx $30 a month maybe, under estimate. I will already be using other supps and most of us taking a heap and i already take some of this and many overlap with what im trying to accomplish.

Here goes a big list, sort of break it down to mito/methylation/antioxidant:
MITO- ribose/creatine, q10, acetly l carnitine, NAD, magnesium
MEHTYLATION BLOCK(bascis)- methyl b12, methylfolate.
ANTIOXIDANTS- NAC, vit E, Vit C, Alpha lipoic acid.

Now im not going to take them all at once but slowly add them every few days and judge the effects. I suppose i will rattle when i walk too. I will still be using antivirals, sleep meds and a few other things.

Now there are a few cfs/me studies showing increased oxidative stress, low glutathione levels, low q10 and carnitine. These sort of tests here in australia are dam expensive, it would be nice to be able get these pre and post 'shot gun' but money only gos so far.

In another post i have mentioned i have used most of these supps in some way but not to this extent. Im also in a different state of improved health sinse then with lower viral load, sinuses sort of controlled and healthy dhea levels.

I would appreciate anyone elses experience with doing shot gun approach similar to this and also if they had testing done before and after and noticed lab improvements and symptom improvements.

It might be awhile before i really get started with this but will try and keep updates going when i can.

I have gone from a lerner scale of a 3 out of 10 to a 6-7 out of 10 with antivirals/immune/infectious treatments but can drop down with a crappy sleep pattern or PEM etc, you know how it is. SO what im trying to achieve is a 9 or a 10 level. At the moment my symptoms are ok if i do little out side my full time work but if i go outside that im knackered. I know many would just like to work fulltime and im greatful for that but its still not a life and u dont know how long u can maintain this either, always on the lookout for a crash.

As of now on all the antioxidants, AL Carnitine, q10.

appreciate any feedback,

cheers!!!

 

[YvieArtist]

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.
Yvonne