Has oxygen therapy helped you?

[Mimicry]

I'm thinking about buying an oxygen concentrator but it costs over 300€ and I have no idea whether it would help me. I know for a fact that Finnish doctors will not prescribe oxygen so no use asking my GP for a trial.

I'm somewhere between mild and moderate but my symptoms have gotten worse over the last year. One of the most annoying symptoms that has got worse is air hunger, I literally feel like my body is starved of oxygen even though there's no obstruction and I can take a deep breath without any problems. From what I've read here on the forums this is a very common experience for many of us. I also feel lightheaded most of the time, and nothing seems to help consistently. My finger oxymeter says my oxygen saturation is 96-98% so I'm wondering if extra oxygen is of any use, since AFAIK the problem isn't that there's no oxygen but that the oxygen isn't getting to the tissues due to blood flow issues and decreased red cell deformability.

I've been using pentoxifylline for a month but apparently you have to take it for at least 2-3 months before seeing any results so I guess I should wait at least one more month before spending money on the oxygen concentrator. Pentoxifylline is supposed to help with blood flow to the extremities. I've also tried dozens of different supplements and I take salt water daily + have been on LDN for 8 months now.

Have you tried oxygen therapy and did it help with any symptoms at all? Has anything else helped with dyspnea or lightheadedness?

I'm grateful for any answers!

 

[Wishful]

Keep in mind that many ME symptoms that 'feel' like something may simply be a problem with neuroprocessing. In your case, it's possible that the neurons involved with sensing oxygen levels in your body may be firing incorrectly, despite normal oxygenation and normal blood flow.

You might consider trying to find someone in your area who has an oxygen concentrator who would be willing to let you try it for at least a short period to see if there's any improvement. There seem to be some ways of producing oxygen at home, using hydrogen peroxide, so that might be a cheap way to experiment.

 

[LINE]

I did a number of oxygen therapies, mostly from the perspective that oxidative therapies would kill the pathogen I contracted which sent me into major CFS. This is different than donating pure oxygen by the way.

Oxidative therapies including hydrogen peroxide IVs and medical grade ozone in which I administered over 500 treatments and use to this day. Again, these therapies are a bit different than using medical grade oxygen. Yes, they donate oxygen, but their purpose is to kill pathogens.

Most of the problems with air hunger are due to the cells accumulating toxins, these toxins interfere with cell functioning. The toxicity originates from immune activation. The immune system produces toxic chemicals such as RNS and ROS (Reactive Nitrogen Species/Reactive Oxygen Species). These chemicals are there to reduce pathogenic loads.

The cells become damaged from these toxic chemicals and when they do, the cells will not function correctly. Respiration of the cells is diminished.

I employ detoxification strategies to combat the toxins, it has worked well.

My brother did EWOT therapy (Exercise With Oxygen Therapy) which is using oxygen and walking on a treadmill.

 

[Mimicry]

Keep in mind that many ME symptoms that 'feel' like something may simply be a problem with neuroprocessing. In your case, it's possible that the neurons involved with sensing oxygen levels in your body may be firing incorrectly, despite normal oxygenation and normal blood flow.

You're right, but AFAIK it's also pretty much established that pwME have reduced blood flow (averaging 17% reduced bloodflow compared to healthy controls I think?) in their brain and that might explain the lightheadedness and brain fog. I also seem to have peripheral neuropathy in both my arms and legs (along with cold extremities) and it gets worse during PEM. So I think it makes sense that I might have somewhat impaired blood flow. I haven't talked to a doctor about it though.

 

[Mimicry]

I did a number of oxygen therapies, mostly from the perspective that oxidative therapies would kill the pathogen I contracted which sent me into major CFS. This is different than donating pure oxygen by the way.

Oxidative therapies including hydrogen peroxide IVs and medical grade ozone in which I administered over 500 treatments and use to this day. Again, these therapies are a bit different than using medical grade oxygen. Yes, they donate oxygen, but their purpose is to kill pathogens.

Most of the problems with air hunger are due to the cells accumulating toxins, these toxins interfere with cell functioning. The toxicity originates from immune activation. The immune system produces toxic chemicals such as RNS and ROS (Reactive Nitrogen Species/Reactive Oxygen Species). These chemicals are there to reduce pathogenic loads.

The cells become damaged from these toxic chemicals and when they do, the cells will not function correctly. Respiration of the cells is diminished.

I employ detoxification strategies to combat the toxins, it has worked well.

My brother did EWOT therapy (Exercise With Oxygen Therapy) which is using oxygen and walking on a treadmill.

Interesting, I haven't come across this kind of therapy before! Hydrogen peroxide IV's sound pretty dangerous though. As far as I know I don't have an active infection of any kind but I've contracted EBV in the past and that's likely what triggered my ME in the first place.

What do you use to reduce RNS and ROS? Antioxidants?

 

[bertiedog]

I'm thinking about buying an oxygen concentrator but it costs over 300€ and I have no idea whether it would help me. I know for a fact that Finnish doctors will not prescribe oxygen so no use asking my GP for a trial.

I have been using various oxygen concentrators for 10 years now and found they are a huge benefit for me. I can literally feel my energy returning to a degree within 30 minutes with the machine set at 5 litres per minute.

My main machine is an Ever Flo which I have had for 3 years and I also have a portable one I bought from eBay about 5 years ago. To be honest the eBay one also gives 5 litres per minute and I find it just as efficient and cost a third of the price of the Ever Flo. They are currently available from eBay here in the UK for around £230 and will deliver up to 7 litres per minute but I have only seen these newer models online.

An oxygen concentrator was prescribed for me by a private ME hospital in England called the Breakspear. I had a basic test on my autonomic system which showed that I had a large reduction of the oxygen in my cells but also raised CO2. I was told by the doctor there that this was very bad for my health and I should use an oxygen concentrator for up to an hour a time at least 3 times a day.

I always remember the first time I used one. I took my dog for a short walk in my local park and I couldn't get over the lovely colours all around me and how sharp everything was It actually felt like I was in a different universe! I am pleased to say that the colours/sharpness has stayed with me and all I can think is that my brain had been starved of sufficient oxygen for some time. I don't ever use if for more than 30 minutes at a time, often it would be only 20 minutes.

One thing I would mention is that to get these real benefits my hormones need to be balanced, ie thyroid, adrenals, sex hormones and I do have to take a low dose of thyroid medication and I am steroid dependent. Whenever any of these has gone off or imbalanced I don't get the same benefits. I am 74 now so this might be a lot to do with this.

The same applies when my body is fighting a virus, I still will feel extremely crap with little apparent benefit from the concentrator although that is not to say that I am in fact receiving some and definiely on some occasions when I have felt nil energy when fighting a virus, the oxygen concentrator has helped me to feel a little better for a short while.

By having a concentrator plus hormone treatment I can be fairly active and my average number of steps a day is 8000 but there is no way I could achieve anything like that without the regular top up from my concentrator. Obviously I am extremely grateful that this is the case, always acknowledging that we are all different.

Pam

 

[Wishful]

You're right, but AFAIK it's also pretty much established that pwME have reduced blood flow (averaging 17% reduced bloodflow compared to healthy controls I think?) in their brain

I don't know whether that is actually true or not (were the studies done properly, and verified by replication?), but I distrust any comparisons made against 'healthy controls', since some of the differences may simply be due to different (less active) lifestyles. If a study uses subjects with severe ME, the controls should be people who are equally bedridden for other reasons.

and that might explain the lightheadedness and brain fog.

Maybe, but I've never noticed any difference in my brainfog (or other ME symptoms) when my blood is pumping much greater than normal than when I've been sedentary all day. By the 'impaired bloodflow' hypothesis, aspirin (blood thinner) should reduce those symptoms, but I never noticed any reduction. I'm sure other PWME have taken treatments that should improve blood flow and oxygenation, yet there's no reliable improvements reported. Overall, I haven't seen any evidence to support the impaired bloodflow hypothesis for ME. I'll accept that impaired bloodflow or oxygenation might be a downstream effect of ME for some people.

 

[LINE]

Interesting, I haven't come across this kind of therapy before! Hydrogen peroxide IV's sound pretty dangerous though. As far as I know I don't have an active infection of any kind, but I've contracted EBV in the past and that's likely what triggered my ME in the first place.

What do you use to reduce RNS and ROS? Antioxidants?

To be honest, I was frightened to try the IVs, but it all worked out. Ozone therapy is great assuming it is at the correct dosage, e.g., too much ozone can be a little troubling. Ozone is probably one of the best therapies in terms of addressing viral issues.

Yes, antioxidants; I use a sweeping approach to managing toxins, and it has been very helpful. I also use at home protocol (Lipid Replacement Therapy) for years and it made a big difference. If you want details, let me know.

 

[Nord Wolf]

This is a very helpful thread, so thanks for starting it up.

I have severe issues with my ability to gain enough air; extreme lightheadedness, dizziness and bouts of brain fog. My lungs always feel tight and swollen with the inability to fully inhale, etc. I've been on an inhaler for 3 years, and it seems to do nothing. I've also been taking prescriptions to balance hormone depletion, since all natural methods did nothing for my system.

I'm heading to the pulmonologist (finally) this afternoon. My main doc said though that even if the pulmonologist only does tests that show the SpO2 to be in normal range, he will make sure I get an oxygen concentrator.

My finger O2 meter shows my SpO2 to average at 96%, but it has registered as low as 88% and as high as 98%. But I'm not fond of the idea of getting an arterial jab to test deeper O2 levels. I'd rather just try an O2 concentrator and see if it makes a difference or not. Plus, it seems an arterial jab test would cost the same or more than a concentrator.

 

[Nord Wolf]

All year my breathing has been slowly degrading, most especially this summer. I have air hunger always, lung tightness, hard to breathe deeply, lung heat, always feel like I’m in a mild-moderate state of suffocation. It’s truly exhausting to breathe. Some days of late it is poor enough I have so little energy I spend most of the day spaced out in a lounge chair or bed.

I had a telahealth consult with my main doctor yesterday. He found something of interest that was buried in my pulmonology files..

A CT scan of the lungs in 2015 showed mild emphysema in the left lung without mass, as well as it being partially reduced or collapsed, but Pulmonology DIDN’T INFORM ME OR MY OTHER DOCTORS. Rather they said I had moderate persistent asthma and treated me for such. But after 7 years of working with asthma protocols, I’ve just gotten worse all around, and my breathing has gotten far worse. We even did a round of Prednisone two winters ago for 5 months at 75 mg, and it didn’t eliminate any symptoms. Pulmonology said if it were asthma the Prednisone would have wiped out all symptoms, but it didn’t.

Now Pulmonology ordered another CT scan of my lungs, but not until next February. Meanwhile my breathing continues to get worse and my resting heart rate averages 90 BPM, which in combination with a downhill slide of breathing leans towards the body not getting enough O2 delivery… even know my SpO2 averages 96. So my main doctor says this to him points to an issue with the lungs that is not asthma (much more aligned with emphysema symptoms), or an issue in the brain that is not properly monitoring O2 and CO2 levels.

My main doctor is going to use the emphysema card to try and push an immediate CT scan and override the pulmonology departments 6 month schedule. He is fed up and disgusted with the the pulmonology department. After we get the CT scan, he is going to try and get me hooked up with out of state pulmonology, just like we had to do with neurology, because the local hospital has become so horrible.

Right now I can barely function. I’m told as soon as I try to do anything, even stand up, my body and brain go instantly into full O2 deficiency. The longer I try to physically do anything, even minor, the more exhausted, out of breath, spaced out and weak I become. Of late all my body wants to do is lay down its so weak. It’s a miserable state.

In the meantime he told me to order a 6 liter O2 concentrator and start using it as much as necessary at 6 liters per minute. It won’t get here until September 1st… but I can’t wait for it to get here so I can start using it! You know things have taken a weird turn when you get excited about getting an O2 concentrator…

The medical consensus hovers around 90% sure that I have emphysema along with this myalgic encephalomyelitis. The kicker is that I’ve never smoked (anything) a day in my life, ever.

I’ll keep you posted on how I feel once I start using the O2 machine.

 

[LINE]

All year my breathing has been slowly degrading, most especially this summer. I have air hunger always, lung tightness, hard to breathe deeply, lung heat, always feel like I’m in a mild-moderate state of suffocation. It’s truly exhausting to breathe. Some days of late it is poor enough I have so little energy I spend most of the day spaced out in a lounge chair or bed.

I would look into anti-oxidants to clear the free radical damage.

 

[Mimicry]

@Nord Wolf holy moly that sounds terrifying! 😳😬 I'm keeping my fingers crossed and hoping the O2 concentrator helps.

I think my air hunger might be partially caused by my back muscles being tight. I even had a slight panic attack the other night because my back and rib muscles were cramping and I felt like I can't breathe properly, even though I tried taking slow, deep breaths as calmly as possible. (Rationally I knew I was able to breathe but for some reason my body just decided it's panic time, lol.) I visited an osteopath two days ago and he mobilized my facet joints and back muscles. Now my back feels weird in a different way but at least the knot that caused me most distress is gone for now.

I know the muscle problem won't explain everything because the air hunger is more prominent when I have PEM. Also I feel like the more overexerted I am, the worse my back feels. The osteopath said he thinks my back muscles just get overworked easily due to ME and develop knots. And who knows, maybe the muscles don't get enough oxygen to begin with and become tight because of that. A classical chicken and egg -type problem!

 

[Nord Wolf]

I would look into anti-oxidants to clear the free radical damage.

Indeed. I've been on high doses of potent antioxidants for the last two years, so hopefully they have been helping keep any real toxic build-up at bay, or to minimal levels.

 

[Nord Wolf]

holy moly that sounds terrifying!

I actually find it far more annoying than anything. But then again I've been in far worse shape before... I tend to take things in stride and continually look for options from every angle I can manage.

The osteopath said he thinks my back muscles just get overworked easily due to ME and develop knots. And who knows, maybe the muscles don't get enough oxygen to begin with and become tight because of that. A classical chicken and egg -type problem!

Yes, there are a lot of muscles surrounding the lungs, so any real tightness can certainly compromise breathing. Is your diaphragm also tight do you know? Some folk have diaphragms that are bound up from structural issues, or other muscular problems, and so make breathing difficult.
As I'm sure everyone here knows, the brain constantly monitors O2 and CO2 levels and makes adjustments, so if something if off up there, proper body levels can be messed up and the lungs could be just fine.
And lastly, there is a chemical (can't remember the name of it) that forces the release of O2 from blood cells after inhalation and binds CO2 for exhalation. If there is an issue with that chemical process, the body can be starved of O2, even with SpO2 levels reading normal.
The body is so complicated!

 

[Nord Wolf]

I received my O2 machine on August 25th and have been using it everyday since.

So far I've noticed my breathing relaxes after about 8 minutes of use. My resting pulse rate also lowers from about 90 or 95 to 65 or 67. I also get a little bit of usable energy shortly after that I can use to do some easy chores.

I use a polarized electromagnetic frequency mat (PEMF) IMRIS brand, everyday. I typically use the Exhaustion setting, which is 16 minutes on level 10. The energy levels are from Sensitive up to 200 being the most intense. Level 10 is the second to lowest. I also use the finger monitor that tracks the heart-rate variability, and adjusts the frequency level throughout the session accordingly. Everyday since this past April the frequency level has resided at either Sensitive or 10 for the entire 16 minutes, never fluctuating higher.

I tried using the O2 concentrator while laying on the PEMF mat. I set the concentrator on 4 liters per minute at 60% O2 concentration. After 16 minutes was up I looked at the frequency chart on the PEMF screen. Most of the session the levels range around 50 as opposed to Sensitive or 10!! This clearly shows the O2 is relaxing the heart, increasing heart-rate variability, and allowing my body to receive and absorb a higher amount of external energy.

Between the results seen on the PEMF chart, and the lowered resting heart rate after using O2 anytime by a minimum of 20 bpm, clearly indicates there has been an serious issue with this for a while. Especially taking into account the high levels of resting heart rate, and very poor heart-rate variability seen and tracked over the last handful of years.

I tend to notice needing to use the O2 concentrator for between 4 and 6 hours per day. Any less and after a couple days I notice my lungs feeling pretty bad. Since using the machine daily since August 25th, I have not had a single crash. Yes, if I do a bit much (which isn’t that much anyway), I will get tired, but since using the O2 I have not had any PEM or elevated ME/CFS symptoms.

My docs are working on getting me a chest CT scan, but the system is so clogged up, the process is very slow. They suspect a form of COPD (though I’ve never smoked a day in my life), because the O2 is helping.

Now that I have my big multi-level O2 machine, and noticed it helps a lot, I’ve ordered a portable one that should arrive this week.

 

[LINE]

@Nord Wolf This is an interesting and informative post. It got me thinking about the idea of microclots which is a concept being used by the long covid people. The idea that the viral activation induces clotting factors so that circulation is slowed.

Cort Johnson at healthrising has an article on this. Clogged Pipes and Micro Clots: Are ME/CFS, Fibromyalgia and Long COVID Endothelial Cell Diseases? - Health Rising

I was put on Plavix with a baby aspirin to address this.

 

[sunshine44]

very interesting.
I often think of what would happen if my body had oxygen at times so it didn't have to compensate and crash repeatedly. Makes a ton of sense.

I remember a naturopath saying i needed a O2 machine in 2017 but my regular Drs were pretty busy passing me around like a hot potato and my requests for it were never filled.