• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Exercising with an oxygen mask... fabulous!

Athene

ihateticks.me
Messages
1,143
Location
Italy
I am putting this in alternative therapies, though it is not regarded as alternative in Germany, but completely mainstream.

I was given this therapy for 2 weeks as part of my Lyme treatment in Augsburg.

First I was put on an exercise bike and given a mask of oxygen to breathe for 20 minutes. There was an ioniser attached, and they said ionised oxygen has a different effect from normal oxygen.
They said I could pedal if I wanted to, but NOT if I felt tired or if it made my legs hurt.

After ten mins I tried pedaling and after 4 minutes ached a little bit, but carried on (naughty!) and the aching went away again. I managed ten minutes.
Next day I did 18 minutes and from then on I did the full 20 minutes every day except 2 days, when I was a bit low on energy. The trainer let me do up to 60 revs a minute with resistance on the lowest setting and would not let me do more than this. (This is just about enough effort on a real bike to avoid tipping over sideways).

The 20 mins of oxygen was followed with normal exercise in the afternoon, which was slow walking, gently stretching out my poor old muscles, toning by pulling on a giant elastic band (evidently in the world of fitness they are the new thing) and balancing on a wobbly rubber cushion to improve my atrocious coordination. The trainer stayed by me the whole time telling me to slow down, not push myself, did it hurt?, if so stop etc.
The longer I had been doing the exygen, the better I was at the other exercises in the afternoon.

Apparently the oxygen with exercise makes the mitochiondria heal and increase in size.
Also, as we know, there is nothing more effective than exercise to stimulate the immune system. There was one patient who could not do any exercise at all, so after her oxygen she would go in the shower and turn the water cold, then hot, then cold, then hot for as long as she could stand it, which is the next best thing to exercise for stimulating the immune system.
Oxygen rich blood creates a hostile environment for borrelia bacteria,.. I wonder if it does so for other various pathogens? Must do.

The other great advice was dealing with OI and POTS.
I got on the cross trainer and they made me go in slow motion for exactly one minute, then stop for one minute. This pause gave the autonomic nervous system time to realise that I was exercising, and that it needed to adjust all the settings. If you don't pause, your heart cannot do what it needs to and your legs and arms end up respiring anaerobically, fill with lactic acid, and then after two minutes you cannot do any more exercise for a day or more. In my case, you also get tachycardia and your head starts spinning.
After the minute pause, I did two minutes motion, then another stop for a minute, 2 minutes axercise, one minute pause etc etc. for as long as it felt good. The successive stops were to allow my blood flow to catch up with the oxygen requirement. It cannot supply sufficiently oxygen rich blood for continuous exercise, but giving it time to catch up at 2 minute internals meant I could actually keep going for about 20 minutes or more without getting lactic acid build up.

If anyone decides to try this, the main thing is that you must exercise really slowly, and if the minute pause does not feel like enough, then make the two minutes of exercise shorter. And above all you must never think that, because you could do ten minutes yesterday, you should be able to do ten minutes today. Energy goes up and down every day and some days you may be able to do nothing, just accept it. If you do what you can, the general trend over the long term is upwards.

I hope I have explained all this clearly. It was really fantastic to exercise and feel that benefit that exercise gives. It was also really amazing to have a trainer there constantly telling me to slow down and stop if it hurts. One patient who had been subjected to graded exercise therapy actually cried to find someone being nice to her and actually HELPING.

Athene.
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
nteresting stuff Athene,thanks for posting.

You've provided some great detail as how to approach this, I'm curious if there are any published papers on any is this?
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Hi Otis,
I have Googled and found lots on oxygen therapy, saying it is very effective. I haven't found anything on the exercise technique though, so that may be something developed and used specifically by that clinic.
 

dsdmom

Senior Member
Messages
397
Athene, with regards to the breaks in exercise...did they say whether you would eventually be able to go longer (maybe 4 minutes) and then a 2 minute break? Or were they very strict on it ALWAYS being 2 minutes on, 2 minutes off?
 

BEG

Senior Member
Messages
1,032
Location
Southeast US
Cheney was once very big on oxygen therapy. So I got the tanks and the nose things. My doctor told me what settings to use and how long to use it each day. Obviously, I couldn't exercise with it though. My head was definately clearer, and I no longer got headaches. As to energy -- no effect. And remember the hyperbaric oxygen chambers? Quite costly but we actually considered it seriously.

Then oxygen fell out of favor and became a big no-no because of the no-o-no cycle or something like that.

Excercising in intervals of 5 minutes on and the same time at rest is recommended by one of the specialists.

These things are similar to your clinic, Athene. But what actually leaves me spellbound is their approach to OI and POTS. And thanks for your conclusion and advice. Nice job, Athene. I look forward to your posts.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Athene,

Thanks for this.

What happens to you normally with exercise (without the oxygen)?

i.e. when would the bad effects usually hit you and what would it feel like?
 

L'engle

moogle
Messages
3,200
Location
Canada
Thanks for the great post! I assume this was prescription grade oxygen(80-90%)? I tried an oxygen bar at a spa yesterday, which was 30% oxygen. I felt better during the time and for a couple hours afterwards. Since it would be really difficult to get a prescription, I'm considering buying an oxygen bar that creates 30% oxygen concentration. Better than nothing and no tanks to buy.

To everyone:
Do you need a prescription for oxygen tanks in the US and UK? What kind of prices are those? The 30% 'oxygen bar' with no prescription is $300, but that's a one time, since it jut gets the air from around and concentrates it. If I get one I'll let you know how it goes.
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
Thanks for the great post! I assume this was prescription grade oxygen(80-90%)? I tried an oxygen bar at a spa yesterday, which was 30% oxygen. I felt better during the time and for a couple hours afterwards. Since it would be really difficult to get a prescription, I'm considering buying an oxygen bar that creates 30% oxygen concentration. Better than nothing and no tanks to buy.

To everyone:
Do you need a prescription for oxygen tanks in the US and UK? What kind of prices are those? The 30% 'oxygen bar' with no prescription is $300, but that's a one time, since it jut gets the air from around and concentrates it. If I get one I'll let you know how it goes.

You can have people over to the bar. :)
 
Thanks for the great post! I assume this was prescription grade oxygen(80-90%)? I tried an oxygen bar at a spa yesterday, which was 30% oxygen. I felt better during the time and for a couple hours afterwards. Since it would be really difficult to get a prescription, I'm considering buying an oxygen bar that creates 30% oxygen concentration. Better than nothing and no tanks to buy.

To everyone:
Do you need a prescription for oxygen tanks in the US and UK? What kind of prices are those? The 30% 'oxygen bar' with no prescription is $300, but that's a one time, since it jut gets the air from around and concentrates it. If I get one I'll let you know how it goes.

Oxygen concentrator machines giving up to 5L per min (average80% O2) can be purchased without prescription. Sometimes you can find secondhand ones on eBay, craigslist or similar online sales sites. Respironics make a few different models but there are some other good companies too. The tubing can be bought new online.

Good luck if you decide to try it!
 

L'engle

moogle
Messages
3,200
Location
Canada
Oxygen concentrator machines giving up to 5L per min (average80% O2) can be purchased without prescription. Sometimes you can find secondhand ones on eBay, craigslist or similar online sales sites. Respironics make a few different models but there are some other good companies too. The tubing can be bought new online.

Good luck if you decide to try it!

Thanks, but I'm in Canada and an oxygen supplier here said that I need a prescription. I just phoned an American on-line outfit and they also said I need a prescription.
Is this in the States somewhere that you can get it with out a px or somewhere else?
 

Dr. Yes

Shame on You
Messages
868
Hi Athene,

Like one of the other posters, I'm wondering about PEM. Do you normally have PEM, and if so, did you suffer from any after this exercise? (Would this level of exercise ordinarily have been sufficient to trigger PEM for you?)

I am putting this in alternative therapies, though it is not regarded as alternative in Germany, but completely mainstream.

I was given this therapy for 2 weeks as part of my Lyme treatment in Augsburg.

First I was put on an exercise bike and given a mask of oxygen to breathe for 20 minutes. There was an ioniser attached, and they said ionised oxygen has a different effect from normal oxygen.
They said I could pedal if I wanted to, but NOT if I felt tired or if it made my legs hurt.

After ten mins I tried pedaling and after 4 minutes ached a little bit, but carried on (naughty!) and the aching went away again. I managed ten minutes.
Next day I did 18 minutes and from then on I did the full 20 minutes every day except 2 days, when I was a bit low on energy. The trainer let me do up to 60 revs a minute with resistance on the lowest setting and would not let me do more than this. (This is just about enough effort on a real bike to avoid tipping over sideways).

The 20 mins of oxygen was followed with normal exercise in the afternoon, which was slow walking, gently stretching out my poor old muscles, toning by pulling on a giant elastic band (evidently in the world of fitness they are the new thing) and balancing on a wobbly rubber cushion to improve my atrocious coordination. The trainer stayed by me the whole time telling me to slow down, not push myself, did it hurt?, if so stop etc.
The longer I had been doing the exygen, the better I was at the other exercises in the afternoon...
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Answering some questions

Hello folks,

PEM questions first: Without oxygen I could do about 45 seconds on an exercise bike with medium aching and after a full minute the burning would become very bad, if pushing I could probably persist for up to 2 minutes.
The initial bad effects are termbling and wobbling all over, worsening of OI and POTS and aching in the muscles used. The general worsening of all symptoms would be very bad the following day and probably moderate the day after. By day 3 I would probably be back to the usual level of symptoms but it would depend how much I had overdone it.

There was one day when I did cause PEM, not on the "oxygen-bike" but on the stop-start exercising later in the day. I would normally be stopped after about twelve minutes by the trainer but he was called away for a phone call and I reckoned I could do 20, which I couldn't. I felt bad for 2 days after that.
I asked him afterwards how he knew exactly when he needed to stop me and he said "I look in your eyes". Then he said that most of us are so used to pushing beyond our available energey resources, all the time, that we have lost the ability to listen to our bodies and realise the stopping point.
I am trying to learn to listen to my body and regain a sense of when to stop, but I have to say I am finding this self-regulation aspect very difficult.

Oxygen concentration: I am afraid I don't know the concentration we were using. Very useless of me. The Wikipedia article says that with oxygen therapy you usually start with a low concentration and gadually build up to 90 percent over the 20 minutes.
I should think the "oxygen bar" you are describing would be good. Since they suck oxygen out of the air to compress it, remember that you absolutely must always have the window open.
My doctor in Italy is prescribing an oxygen tank for me to use at home. He says without prescription they are very expensive. I think in Italy you can only buy the tiny ones without prescription, which last half and hour.

With the on-off exercies (2 mins on and 1 minute off), the eventual build up would be to reduce the interval and increase the exercise time both at once. But this would be after several weeks of building up the amount of time you can do the 1min/2min exercise thing. I can do it for about 12 minutes, but once you can do half an hour like this, then I think you could start altering the intervals as your workout goes on.
 
Hello L'engle,

Yes, you are right, oxygen concentrators should be a prescription item because at levels of 50-90% O2 at rates between 1-5L per min it should ideally be prescribed and monitored by a knowledgeable doctor - if you could find one. However, O2 concentrators can by purchased from local trading websites where they can sell for a fraction the price if you're lucky enough to find them. I've seen some on ebay at different times, both secondhand as well as new ones from Hong Kong that say tehy ship internationally.
 

L'engle

moogle
Messages
3,200
Location
Canada
Hello L'engle,

Yes, you are right, oxygen concentrators should be a prescription item because at levels of 50-90% O2 at rates between 1-5L per min it should ideally be prescribed and monitored by a knowledgeable doctor - if you could find one. However, O2 concentrators can by purchased from local trading websites where they can sell for a fraction the price if you're lucky enough to find them. I've seen some on ebay at different times, both secondhand as well as new ones from Hong Kong that say tehy ship internationally.

Oh, OK! Thanks for the info!
 

L'engle

moogle
Messages
3,200
Location
Canada
Hi folks, I've put off reporting back on my oxygen therapy, to get a more accurate sense of what it does over time. I've been using an oxygen concentrator for almost 2 months now. For the first month, I used it an hour a day, and for the second month, I've been using it 2-3 hours a day. It is certainly doing something. The most noticeable change is in oxygen hunger, shortness of breath and PEM. I think I recover better from exercise and mental exertion, so I can keep a baseline of activity more consistently, with less of a push and crash sequence. I'm still really far off from having any kind of normal life, but this has taken the edge off, at least subtly. It's hard to tell how much it is doing, since I also rely on electrolyte/salt intake, which changes every day. I've been using less salt, since I was beginning to have trouble with it. The oxygen is helping to get by on a more normal level of salt. So the electrolytes and oxygen together have helped me to get from a level of 2 mental energy and 3 physical energy, up to a 4. Approximately two days a week of work, plus moderate, though not strenuous exercise. I still need to lie down 11-12 hours a night and take it really easy during the day.

So I hope I will not have to follow this up by saying I've crashed and the oxygen isn't doing anything... so far it is helping. Good luck if anyone else decides to get an oxygen concentrator. I ended up getting the prescription grade used, rather than getting an 'oxygen bar. I wouldn't want to be on a concentration of oxygen lower than this one.
 
Messages
2,565
Location
US
Very informative. If anyone tries a concentrator, let us know. I am seeing some for $200-$350 on craigslist and some for $2000.
 
Messages
96
Location
Chicago
these are two things that i talked my doctor about in my initial appointment, i told him that when i go to the gym i really can't exercise anymore but when i go to the swimming pool and swim for a while i start to feel a lot better he said it's because when you exercise your body releases endorphins and these make some of your pain and inflammation go away, i also told him i wanna try HBOT because it's seems like kids with autism have been having great results with this, they have some HBOT machines that you can rent for about $150 a month and im thinking about getting one..
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Hi L'Engle!

It's great to hear about your benefits with oxygen and also to compare how you are using it.

You are using it for far longer than me. What concentration do you have? I take 4 litres a minute and use it for 20 to 30 minutes a day. I am keen to try increasing the amount I take, but I want to know the concentration you're using before I go ahead.

I sometimes also take a second dose if I get a headache or a sudden attack of bad brain fog and I get instant relief. (I get several types of headache, it doesn't help for the throbbing excruciating ones, but does for the type that often come when you're in a stuffy place and are accompanied by brain fog - hope that makes sense).

Have you tried doing any exercise while breathing oxygen? I stoppe doing any physical movement a couple of weeks ago as my stamina levels are just too low these days. All my other symptoms have decreased to be minimal, but the exhaustion is terrible, even worse. I think this is related to antibiotics rather than oxygen though. There's no evidence of axygen doing this and plenty that antibiotics do.

Also, are you taking antioxidant supplements? I read a research article saying that Austistic children treated with hyperbaric oxygen got great benefits but they found they were better overall when taking antioxidants to protect from oxidative stress. Apparently this keeps the risk of increase in free radicals to an absolute minumum. I take Lipoic acid and selenium.

I hope you keep up the progress!