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Oxygen treatment

Discussion in 'General ME/CFS Discussion' started by Tembo, Jul 31, 2013.

  1. Tembo

    Tembo Australia

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    Hi Everyone:)
    Just looking for some advice. Im a 37 year old mother of 4, been battling with CFS since I was 16 after a bout of glandular fever changed my life forever.
    I struggle daily and worsen each year. However this past Monday my husband had surgery, I was making massive hospital trips daily and that with four children just about knocked me senseless. By Thursday I was in hideous shape, invalid state by nighttime. I had my weekly B12 injection that day and hoped to fee a bit better in the morning, my husband had complications overnight and the next day I dragged myself back to the hospital.
    There was a moment where he was in the shower, and I eyed off his oxygen mask..i put the little oxygen tube into my nostrals and kept it there for 20mins. By nightfall I felt different, strong, steady and I was laughing and joking with my children. 5.30am the next morning I woke up refreshed, bright and wide awake. That day proceeded to be one of the best days of my life!!! So I got a another 20mins of oxygen that day and Sunday I had a repeat - AMAZING day. After 3 days of 20min sessions my husband was finally dishcharged and we came home home. Still, Monday tues Wednesday were WONDERFUL, I was a new woman. not felt like this for years!!

    Today I it was gone, its hard to crash so hard when you've been up like that, I spent the day sleeping and dragging myself from bed to couch.

    My question is why? What did that oxygen do for me? I take hundreds of dollars worth of medications every months by a very clever cfs Dr here in Western Australia and this worked better than anything!

    Can someone shed some light on this for me? is oxygen something I can do at home? I am soo desperate to have some more!

    Thanks for your help in advance:)
    Tembo
     
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  2. golden

    golden Senior Member

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    An oxygen rich body is good for health.

    I tried aggessive breathing techniques and collapsed. It created terrible pressure in my head. And triggered new symptoms.
    There was also very distinctive PEM from this. I too have not understood why this happened to me (never collapsed before and since)

    I have thought I would like to try O2though.

    Happy you seemed to find something helpful !
     
  3. Allyson

    Allyson *****

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    there is a longish thread on oxygen in the not crazy forum where people have tried nasal and hyperbaric O2 over the years

    I tried the intranasal once or twice and found I crashed less the next day that I normally would aft 30 mins at 6 litres a minute - - but this could be chance

    Here is a link that takes you to the forum but you will need to search back in there for the oxygen thread/s
    http://forum.notcrazy.net/index.php?topic=9571.0
    good luck

    Ally
     
  4. Sea

    Sea Senior Member

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    My doctor has just given me a prescription for oxygen. I've been told to ring the company that supplies it and arrange it with them. They will deliver to my door and set up and instruct me how to use it. My choices are oxygen tanks or an oxygen concentrator. I haven't quite worked out the pros and cons of each yet but I am leaning towards the concentrator which will cost $135/month.
     
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  5. L'engle

    L'engle moderate ME

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    You can get secondhand O2 concentrators on craiglist if you can't get a prescription. My phone just erased my longer post about this, too frustrated to retype it now.
     
    Sea likes this.
  6. Sea

    Sea Senior Member

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    Would love to hear more when you're up to reposting. I plan to look into the cost of a more long term option if I find the oxygen helpful
     
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  7. Allyson

    Allyson *****

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    I losa lot of poststoo on PR that way - very frustrating

    Sea Cath on NC uses O2 permanently - she bought a concentrator so contact her she is in NSW too.

    1300 688 388 is nunber for a Sydney supply company

    I looked into it for while but never got around to it and was never convinced enough of the benefits

    tho open to hear more
    someone in me cfs vic just tried hyperbaric O2 and had very BAD reaction to it - 3 times

    good luck - let us know how go - you can get a discount on your electricity for running it too via DHS generators cost a fair bit to run

    ALly
     
  8. Rand56

    Rand56 Senior Member

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    hi Allyson

    I'm no expert here, but it is quite possible that person who had bad reactions to hyperbaric O2 therapy, could have low carbon dioxide levels. Sufficient CO2 levels are needed to break oxygen off hemoglobin to "oxygenate" the cells.

    People can read up about the Buteyko method and what Ray Peat says about the importance of having sufficient CO2 levels.

    Rand
     
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  9. golden

    golden Senior Member

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    I think this thread is a key issue.
    I will research this as my today job.

    http://peatarian.com/11822/ray-peats-only-flaw-is-not-accepting-buteyko-method

    i read this.

    Interestingly, my body keeps on naturally taking fewer breaths etc. is it trying to oxygenate and balance my thyroid naturally ?

    when i did the aggressive breathing and collapsed - i felt severely short of oxygen !
     
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  10. Tembo

    Tembo Australia

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    Thank you so much for your replies everyone, much appreciated.
    I saw this new Dr tonight and he is running some bloods tests to see if im suitable for Intravenuous Oxygen Therapy. they basically withdraw a small bag of your blood, oxidize that blood and pump it back into you. The Dr said you normally feel its effects before the drip is even finished. I have to have it twice a week for 3 weeks and then just a top when I need it. Its $140 a drip.
    He said lots of his CFS patients have wonderful effects from this so im eager to see if it works for me. I will report back if anyone is interested to know what happens?

    He also said the oxygen was wonderful for killing off bad things in the body, including parasties which I found very interesting.
     
    golden likes this.
  11. Rand56

    Rand56 Senior Member

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    hi golden

    Thanks for that link. That's interesting what that poster said about Peat commenting on Buteyko. Maybe he thinks that Buteyko isn't the "most" effective way to raise CO2 levels? Quite some time ago, which was the last time I overexerted myself too much doing cardio, my PEM was pretty intense. Took me a good 5 or 6 days to recover. I'm wondering if my own lower CO2 levels played a good part in that. I'm trying to be more consciencious of only breathing in thru my nose and I make myself think more about it at the gym when I am only just doing some brisk walking on the treadmill and even when lifting weights. It's hard to try to re-condition myself to stop breathing thru my mouth.

    Rand
     
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  12. Rand56

    Rand56 Senior Member

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    To comment further on what that poster said in that link, the best that I can do on my CP <control pause> is 22. I definitely need some more work on trying to get that higher.

    Rand
     
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  13. SickOfSickness

    SickOfSickness Senior Member

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    Second hand concentrators on Craigslist are around $250-$300 for the 10 liter per minute or $500 for models going up to 15 liter per minute. Most of us should have 15 lpm but having a 10 is better than nothing, if you can't afford more. You might get lucky and get one cheaper.

    I'd be picky about where you get it. I think you can pick up certain infections from a previous user even if you change the filter, tubing, and mask. Some could be serious I believe. I am not sure how to prevent that, but I believe if you get a refurbished one, or from a company specializing in second hand equipment, they have cleaned it inside too.

    I could not tolerate the concentrator because of the vinyl tubing and mask. After washing them and letting them sit for a month they still were a problem for my chemical sensitivities.

    I wonder if oxygen saturation level can indicate if the oxygen will work for someone? Meaning a patient with good 98% room saturation may not get a benefit but a patient with low 92% is likely to have benefits.
     
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  14. perchance dreamer

    perchance dreamer Senior Member

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    My O2 levels are 92%. One of my doctors doesn't think I would benefit from a trial of O2 therapy, but my ENT does. I'd like to try it, but 92% is way too high for my insurance to help out.

    I have looked at the oxygen bars on Amazon, but reviews are very mixed.
     
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  15. golden

    golden Senior Member

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    I can't wait to understand it!

    i already alwats breathe through my nose and belly ...great !

    A funny thing i do though is pinch the tip of my nose - its lovely and relaxing..

    and piggy nose ha ha pinching nose and moving it up - i get more oxygen for less effort - sweet lol

    There are also the sinus pressure points down the side of the nose and i find that helpful for oxygen too.
    will learn more and be back !
     
  16. golden

    golden Senior Member

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    I am very interested , thanks! Good luck.

    my g.p.(NHS !) says nothing harmful can live in a n oxygen rich environment. its what all the yoga and yogi students practice to stay well too. my g.p. is a trainee yogi
     
  17. L'engle

    L'engle moderate ME

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    SickOfSickness and everyone else. I agree that secondhand concentrators need to be clean. The one I got had 500 hours on it and the filter looked brand new. I also had trouble with the vinyl tubing and felt like that was overall toxic and negative. I would sit by the concentrator and just cup my hand around the outflow each time I wanted to take a breath. Ultimately it was a nuisance to do this for 30 minutes or more per day since I then couldn't lie down or do anything. I think the oxygen might have ruined the mp3 player that I would listen to while sitting by the machine.

    So I used it for about 6 months but haven't used it too much since. It's sitting there and I think about using it now and again. Even so I used it everyday for 6 months and did get some small benefit from it in that time so I don't consider it a waste.

    I think the issue may be that while it does saturate the blood with oxygen, we still don't get enough oxygen to our brain. So it's still like sending in too few supply trucks, just overloaded with too many supplies if you see what I mean. I'm not sure how good that is over the long term but it's a quick fix method when you're in a tough time.
     
  18. SickOfSickness

    SickOfSickness Senior Member

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    It seems like very worth a try. Some PWCs see much improvement. If it doesn't work, return or resell the concentrator.
     
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  19. golden

    golden Senior Member

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    I have started a buteyko thread. I think thats correct thread etiquette ? but i am very keen on trying buteyko . my control pause was bewteen 10 and 15. the few times i tried it. I am very happy to be above 10! :)
     
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  20. Sea

    Sea Senior Member

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    My oxygen levels are fine at night but drop regularly during the day but only for about a minute. Then my heart rate goes up to compensate and oxygen rises again. Overall my statistics are 30% of the time below 95%, 3% of the time below 90%
     
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