Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by merylg, Jul 19, 2012.
Thanks for posting meryl.
Bumping it up!
Mitochondria are constantly being regenerated. It's time to look at factors influencing the mitochondria. Change those and the mitochondria will be fine.
Good overview of mitochondrial disorders:
I've been thinking about Encephalopathy..."a syndrome of global brain dysfunction"...http://en.wikipedia.org/wiki/Encephalopathy
It's worth considering the different types. To me "brain-fog" seems like some kind of encephalopathy.
Surprising I can think at all today, as have PEM/PENE with bonus "brain-fog", after a trip to the dentist for scale & clean!
I had headphones & music to try and block off the sound, sun-glasses to dampen the fluorescent lighting, and refused Nitrous oxide to save the few mitochondria that are still working!
Here is a good publication with a background on mitochondrial disease & how it is treated.
http://www.amdf.org.au/downloads/Australian Doctor - How to Treat Mitochondrial Disease.pdf
At the bottom of the link it had a case study of a 30y/o male with mito dysfunction, it didnt mention much about treatment, looks like they investigate if its affecting other organs and treat as such as well as life style adjustments, which sounds like another way of pacing.
Other articles i have read on this disorder mention q10, carnitine etc to treat this disorder but doesnt say how effective it is. Interesting how it can be induced by a pathogen/infection.
If you read at the beginning "Background" you will see the prevalence of certain mitochondrial mutations in Australia, is quite high. People carrying these mutations, if they do come down with the disease, don't necessarily manifest ALL of the associated symptoms. Fascinating & complex!
Here is a model for how prehepatic portal hypertension can lead to mitochondrial dysfunction in the brain:
Interesting. I've read stuff on this before. I believe at one point it was thought most Fibro cases - because of the high number of heart problems, were mito related. But I never bothered with it because I couldn't see how to get tested and if I can't even get tested, I can't hope to get treated.
If there's more recent stuff - I'll have another look.
Have you seen this interview with Sarah Myhill, she talks about Mitochondrial dysfunction and the tests she does here in the UK, I think you can order them from her web-site.
It was posted by Justy but I can't find the tread link.
Thank you for bumping up this thread with more info, Meryl.
Learn more about Mitochondria here:
Some great info there. I was very interested in MELAS Syndrome which is found in one in every 500 of the general population as it mentioned also stroke like episodes.... I have had at times stroke like episodes with my ME (to the point that some people wondered if I'd had a stroke due to one floppy arm etc).
Very interesting to read that more then one in every 200 of the general population has some kind of Mito mutation. I so want to get tested for those mutations at some point esp since I had a couple of weird incidences which could of been mito related as a child (way before I got ME).
im from Croatia/Dubrovnik and since in my country cfs is just three letter acronim, and nothing more, after 12 years of suffering(first year-two was nineth circle of hell) i have decided to do that test...and basiclly just now im cfs diagnosed. my mitochondria level was measured 0,24 and normally is 1-3, which means im on 24% energy of the lowest normal. is there anyone else measuring same thing and if, what are results and what condition u are?? im in slight relap period last year with ups and downs but not on level i have reached at moment(i belive i was 60% recover...i even travel with friends once...was hard but worth felling alive again). now i work few hours a day...some day just rest. my main sympthom is fatique...and terrible sleep this last year, which i think was trigger to my relaps. i was wakeing up with felling of brain stroke.
Hi Banksy, i have had the test too and my functional score was at 30% which shocked me as i was trying to live at a much higher level. Since pacing and supplements (as suggested from the tests) i have had some improvements - can be up and about more and can get out of the house with the use of a wheelchair for longer trips etc. even went on holiday this year with my family (although quite exhausting was fun!)
I suggest if you want to discuss this further you start a new thread. Not many people will find your question in here.
All the best, Justy x
thx for quick respond and advice about thread. ill do if dont get few more answers. im pacing...god thing while i was felling better i manage to built my career by working just few hours. dr myhill said to me that she was actually surprised im able to do anything but said that she have noticed small group of younger men cooping better probably because adrenalin and testosterone...but unfortunately this is time limited and im afraid i have squeezed most of that juice. i have started supplements and diet(stone age) a 5-6 weeks ago and dont seem to feel any improvement so far but im patient and i know 12 years doing nothing(but pacing when pacing was only i could do) will take more effort. im working on my sleep by starting therapist...but he would like me to start with some "balance drugs" instead heavy sedative. on that side also no big improvement but i trust this guy and will follow his ideas(at least few more months)...i bought fishing equipment(i live 10 meters from sea) but after 12 years suffering im nervous fishermen hahaha and will have to find something else relaxing me. anyone willing to buy some god fishing equipment??? hahaha
Hi Banksy - i think with proper pacing and resting the diet and supplements can take a good 3 -6 months to begin to work and see improvements. Hopefully the fishing equipment will come in handy in the future.
I also seem to be able to push myself quite easily (using adrenaline maybe) and can even push for quite long periods before a collapse sets in. I ended up wth severe anxiety and adrenal exhaustion from this way of living with M.E. My improvements didnt come until i had been seriously resting and pacing for a long long while.
Take care, Justy (I like the idea of the guy who will help you with sleep - for me i always try a more gentle approach before heavier drugs etc - i have had problems with medications making me more ill so i like a gentle approach)
Hi Banksy, I haven't been tested as yet. I would like to see dr Myhill at some point. - when money and stuff allows.
I am desperately trying to pace so that I can avert the horrible cycle of push-crash over and over.
I will find a way...just haven't quite found it yet.
I really wish a full assessment was available on the NHS so I could work out what my body is and isn't doing.
I have a new Cardio who is a POTS specialist. I should be wired up for 24hr ECG next week and then I hope he'll do further tests. Who knows!
From what you've said it seems it's even harder to get answers in Croatia. 12 years is a long time to have no answers. I hope you find some -even if it's only online.
Keep b---gering on.
thx for answers. just to tell u my experience with dr myhill. as im from croatia i didnt visit her, instead i have send my blood so she(acumen/devon) can do the tests. and then she wrote me a letter/e-mail with what to do. i know its better to see her in live but this can be good start. the price for these tests was around 500 usd + 130 usd for sending blood(the important is to use service which provide max 48 hours delivery service. and tell them its blood so they dont put it with cargo that is exposed to low temperatures while in plane. i used DHL). if i get better to travel and she think she can do more if meet me personal i will definitely do.
Hi Banksy - i live in Wales and have seen Dr Myhill in person once - but i also have had phone consults, which are just as useful. I started out doing the test first, like you, to keep costs down. I have just had another phone consult - i think much of what she says/advises over the phone can be done by reading her website - it is all there - but she admits herself that what she tells her patients to do is very hard (the diets and supps especially)
Shell - 17 years and no work up at all on the NHS - had to be diagnosed using the Mito test from Dr M. Even now i havent had other obvious nconditions such as Lupus ruled out (have many of the symptoms) Bloody NHS!
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