Low-Flow O2 for ME/CFS and PEM

[Nord Wolf]

I've been doing some research into oxygen supplementation for asthma and Myalgic Encephalomyelitis. We are back into the warm season when lots of particulates choke the air. My lungs have been struggling greatly again. Breathing has become difficult again, especially on hot days, high humidity days, low pressure system; days with moderate air quality, standing, walking, laying on my sides, etc. My voice gets fatigued quickly and is reduced to a soft rasp (without sore throat). I go through spells where my body isn't getting enough O2 and so my breathing becomes rapid and I get body anxiety. I get more lightheaded episodes, my head gets tight, I get more headaches, my cognitive function glitches acutely when this happens as well...

When it happens it is hard to stand, balance, walk, thing straight, see straight, and literally get my muscles working (they feel like cement).

I've been choked out many times in my life in martial training, been tortured with various suffocation methods through spec ops work years ago, and climbed many mountains over 14,000 feet in elevation… I know what low O2 feels like, and the symptoms I'm trying to describe fit the profile to a T.

Throughout my life my blood O2 levels always registered 99-100%, always. This is with a finger monitor and O2 watch monitor. However, in the last 14-16 months, with the severe increase in ME/CFS symptoms, I’ve noticed my blood O2 varies from 85% up to 99%. Interestingly when I am a bit active (slow walking, making dinner, etc), my blood O2 drops to the levels of 85-92%. If I have increased breathing due to walking, my blood O2 drops to those levels as well. Only when I’m sitting and relaxed does my blood O2 these days have a chance of attaining 99%.

It appears that when I am active and my body requires more oxygen, my blood O2 drops as opposed to elevating with saturation like it used to.

The Infrared light, tons of supplements, high quality food/diet, acupressure, breathing exercises, and so on, for years, have not helped.

Is it from ME/CFS - I’m sure of it, and upon research and talking with people with ME/CFS around the world, oxidative stress due to poor O2 intake or the body's lack of ability to move it properly instigates and aggravates symptoms.

I've found articles talking about the issue with O2 and the increased symptomology in people with ME/CFS.

https://www.healthrising.org/blog/2...fatigue-syndrome-oxidative-stress-low-oxygen/

https://pubmed.ncbi.nlm.nih.gov/28282079/

https://www.healthrising.org/blog/2...-exertional-malaise-chronic-fatigue-syndrome/

Has anyone here tried low-flow oxygen for their ME/CFS and PEM symptoms? I recently sent the idea and findings to my healthcare team to get their feedback. Awaiting a reply.

 

[sunshine44]

I deal with the same. I was unable to obtain O2 from my cardiologist when i became severe severe and could no longer leave house but i know a few that do. I cannot undertsand why supplemental O2 was never given to me. In the initial days my O2 would go to 89 just trying to sit up for 30 seconds.

 

[Rufous McKinney]

I cannot undertsand why supplemental O2 was never given to me. In the initial days my O2 would go to 89 just trying to sit up for 30 seconds.

my oxygen levels are very high....its not being extracted, apparently.

the air hunger for me is horrific if I get acutely ill...it scares me. When inflamed: its really bad.

And now I"m wondering about my someday I will go visit the flowers up in the mountains wiht my daughter (dream)..(dream on) and WHAT IF I can't breathe?

 

[Pyrrhus]

If your oxygen saturation drops as low as 85-92%, I would certainly think that a doctor would consider you a candidate for supplemental oxygen.

I don't think that we generally see low oxygen saturation in ME, but some people have experimented with supplemental oxygen, whether from an oxygen concentrator or from a hyperbaric chamber. Results vary, as always.

 

[Nord Wolf]

Yes the O2 saturation drops to 85-91 or 92% daily, especially upon activity. This morning (usual morning), I awoke with a blood O2 level measuring 98%. As soon as I got out of bed and walked slowly across the room my blood O2 measured 89%. I always measure three times in a row to get the real reading. Only after I sat down and rested for about 20 minutes did the O2 level increase back to 97%.

Anyway, I've emailed my doc a detailed O2 chart for the last two weeks and await his reply.

With all the sunbathing I've been doing, since discovering the connection between UVs and enough increase in energy as to not be bed ridden since April, I would hope my O2 levels would increase. It is proven that direct UVs entice the body to produce more red blood cells, which in-turn allows the body to elevate blood oxygen levels. But who really knows what is going on inside a body with high levels of ME/CFS...
https://forums.phoenixrising.me/thr...light-therapy-leds.79181/page-10#post-2401796

 

[JackieODam]

Did you end up getting the O2? If you did, what LPM have you found helpful.

I've also found it so rediculous that it's not easily accessible. Gatekeeping bs.

 

[Nord Wolf]

I cannot see today, again, so thanks to my wife for tying this for me!

I did, last year. I think it was August when I bought a new “household oxygen bar” off ebay. Insurance wouldn’t cover the O2 tanks, which is OK actually because the tanks are a pain in the butt, and the company needs to make regular deliveries. It is a home oxygen concentrator with multiple speeds and liters per minute options. Mine has three options:

90% O2 at 1L pm
40% O2 at 3L pm
30% O2 at 6L pm

It also has a water cup that holds distilled water to make the O2 less drying.

I also have a portable one that runs on lithium battery packs. I have two batteries and each one lasts about 2.5 to 3 hours. That one doesn’t have a water cup, so depending on the person, it can be a bit drying, especially in arid climates. But for me, it works well since New England tends to be humid.

My doctor recommended I start with the 40% O2 at 3L per minute. Having been using the concentrator on and off for 11 months, I have found the 40% at 3L per minute to be most effective for me. I have tried the other ratios, but the one that seems to help the most is the 40 at 3.

I can’t say it helps PEM of fatigue. It also doesn’t do anything for lung inflammation. However, my SpO2 always increases when and after using the machine for 30 minute periods. I can have a SpO2 of 86 and after 30 minutes of 40% at 3L my SpO2 will register 97. The increased O2 also helps my system relax more and decrease mental fog. At times it can lower my resting heart rate too, sometimes from 104 down to 72. Many days I will use it as soon as waking in the morning, and then right before bed at night. Of course, I’ll use it as often as needed throughout the day also.

My typical time usage is between 30 and 45 minutes, but I have used it many times for 60 minute lengths. During the warm season and autumn is when I need to use it most. My respiratory system tends to inflame a lot when the temps are warm and the humidity is up, as well as with heavy low pressure systems. I found I didn’t need it as much during the coldest driest months.

 

[JackieODam]

I cannot see today, again, so thanks to my wife for tying this for me!

I did, last year. I think it was August when I bought a new “household oxygen bar” off ebay. Insurance wouldn’t cover the O2 tanks, which is OK actually because the tanks are a pain in the butt, and the company needs to make regular deliveries. It is a home oxygen concentrator with multiple speeds and liters per minute options. Mine has three options:

90% O2 at 1L pm
40% O2 at 3L pm
30% O2 at 6L pm

It also has a water cup that holds distilled water to make the O2 less drying.

I also have a portable one that runs on lithium battery packs. I have two batteries and each one lasts about 2.5 to 3 hours. That one doesn’t have a water cup, so depending on the person, it can be a bit drying, especially in arid climates. But for me, it works well since New England tends to be humid.

My doctor recommended I start with the 40% O2 at 3L per minute. Having been using the concentrator on and off for 11 months, I have found the 40% at 3L per minute to be most effective for me. I have tried the other ratios, but the one that seems to help the most is the 40 at 3.

I can’t say it helps PEM of fatigue. It also doesn’t do anything for lung inflammation. However, my SpO2 always increases when and after using the machine for 30 minute periods. I can have a SpO2 of 86 and after 30 minutes of 40% at 3L my SpO2 will register 97. The increased O2 also helps my system relax more and decrease mental fog. At times it can lower my resting heart rate too, sometimes from 104 down to 72. Many days I will use it as soon as waking in the morning, and then right before bed at night. Of course, I’ll use it as often as needed throughout the day also.

My typical time usage is between 30 and 45 minutes, but I have used it many times for 60 minute lengths. During the warm season and autumn is when I need to use it most. My respiratory system tends to inflame a lot when the temps are warm and the humidity is up, as well as with heavy low pressure systems. I found I didn’t need it as much during the coldest driest months.

sorry to hear about your sight. thanks to you and your wife for all the info. "oxygen bar" instead of the "oxygen concentrator" i was searching is turning up some much more affordable options.

do you mind sharing which ones you got specifically?

 

[Nord Wolf]

The O2 concentrator I have doesn’t seem to be available anymore on ebay or amazon. Actually, there are none on ebay right now, and only a few expensive ones on amazon. My guess is they were a big seller with all the Canadian wildfire smoke streaming into America.

The one I bought was $230.00, but the only ones available on amazon are between $500 and $900. Quite a difference from the price I paid.

https://www.amazon.com/s?k=oxygen+c...efix=oxygen+concentraotor,aps,225&ref=sr_pg_1

They do have the portable ones though. But like I said, they only have one flow option (pre-set) and I find really best for little trips out and about.

This is the one I have, but again, I only paid $205.00 for it, and now they want $339.00.

https://www.amazon.com/Use-G3-𝑷orta...-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1

Maybe there are other sites out there selling more options right now? Best luck finding one that suits your needs!

 

[JackieODam]

Awesome, thanks.