Feel like Oxygen not getting into my cells/brain/body

[TheMoonIsBlue]

Does anyone else get this feeling? Like when you are breathing, it feels like the oxygen isn't getting into your cells, or lungs, or brain, or body in general?

I also do get "Oxygen Hungry"......I don't know if this is the same, I feel so different and yet the same every day it is hard to explain.

Sometimes I get this feeling of Oxygen not getting into my body when I get that dreadful "poisoned or toxic" feeling in my body. But, the two don't always go hand in hand.

 

[LaurelW]

I get this feeling all the time. I also notice that if I exert myself a bit, I don't seem to be automatically breathing hard enough to get enough oxygen, so lately I've been voluntarily breathing deeper a lot of the time and it seems to help.

 

[3CFIDS@ourhouse]

Absolutely! I feel like I'm starved for oxygen and if I exert at all (even talking) or take in more oxygen, it's worse. Have you read about Dr. Cheney measuring oxygen in the blood through pulse oxymetry (with the clamp on the finger)? He measured the oxygen level, then had patients hold their breath for 30 seconds, then measured again. In healthy people, the oxygen level dropped several points after breath-holding because the oxygen in the blood is being picked up in the tissues. However, for most people with CFS, it doesn't drop much or at all, meaning the oxygen isn't actually getting to cells! It's right there in our blood, but for some reason it isn't going anywhere. This seems like it could help explain a lot of things- brain fog, gut issues, etc.

 

[Sallysblooms]

I started terrible air hunger when my POTS began. Thankfully,
my doctor knew how to help. Carniclear and Co Q10 took the problem away completely. It was awful.

 

[markmc20001]

I have a problem that sounds similar too unfortunately. I have no idea what is causing it for me, but am suspect it may have to do with my liver and also possibly heme.

Here is a bunch of wonderful links that someone posted before on liver if you ar interested. I learned that the liver has two phases of detox and got some ideas for why caffine might be giving me toubles.

http://www.gilbertssyndrome.com/detoxification.php

Please post if you find any help for your symptoms! Mark

 

[Glynis Steele]

Not sure if this is useful here, but one of the symptoms of d-lactic acidosis is hyperventilation.

Glynis

 

[Jenny]

I get the air hunger and constant toxic feeling too Moon.

But autonomic function tests showed that I had plenty of O2 but was lacking CO2!

Jenny

 

[Nielk]

I get similar feeling of not breathing in enough air but it feels to me that it's from my sinus problems.
I suffer from chronic sinus problems and blockage.

 

[L'engle]

I have that. I started using an oxygen concentrator one hour a day and that is better, though I still have a lot of other symptoms. But I'm not gasping for breath in the middle of conversations or feeling totally suffocated any more. My level of functioning is subtly better, but I mostly feel less crashing. A bit more brain function or a bit more exercise functioning, though not usually both on the same day. Good luck if you decide to try some kind of oxygen therapy.

 

[Wayne]

Does anyone else get this feeling? Like when you are breathing, it feels like the oxygen isn't getting into your cells, or lungs, or brain, or body in general?

I also do get "Oxygen Hungry"......I don't know if this is the same, I feel so different and yet the same every day it is hard to explain.

Sometimes I get this feeling of Oxygen not getting into my body when I get that dreadful "poisoned or toxic" feeling in my body. But, the two don't always go hand in hand.

Hi MoonIsBlue,

I used to experience this quite severely. I did an experiment with MMS (chlorine dioxide compound) which alleviated the worst of these symptoms. Since MMS (Miracle Mineral Supplement) kills pathogens, my best guess is some kind of infection was causing my problems. It may be different for others, but trying various kinds of natural antiobiotics might be helpful.

Best, Wayne

 

[Wonko]

baesed on my experience it's perfectly normal for pwME to experience this a lot of the time

 

[TheMoonIsBlue]

Hey, Thanks for all the replies....will re-read them all later.

Happy Turkey Day to all in the States!

 

[Marg]

I started terrible air hunger when my POTS began. Thankfully,
my doctor knew how to help. Carniclear and Co Q10 took the problem away completely. It was awful.

Hi Sally,

Where do you get the Carniclear? I m taking Acetyl L Carnitine in a capsule but it does not seem to be helping much. I take Ubiquinol, some some to think it is better than CoQ10.

I joined the group you told me about and read a lot. I did not post, I am having trouble keeping up with it all.

 

[TheMoonIsBlue]

Absolutely! I feel like I'm starved for oxygen and if I exert at all (even talking) or take in more oxygen, it's worse. Have you read about Dr. Cheney measuring oxygen in the blood through pulse oxymetry (with the clamp on the finger)? He measured the oxygen level, then had patients hold their breath for 30 seconds, then measured again. In healthy people, the oxygen level dropped several points after breath-holding because the oxygen in the blood is being picked up in the tissues. However, for most people with CFS, it doesn't drop much or at all, meaning the oxygen isn't actually getting to cells! It's right there in our blood, but for some reason it isn't going anywhere. This seems like it could help explain a lot of things- brain fog, gut issues, etc.

Hi 3CFIDS, I have read about this......I remember Cheney's statement that ME/CFS Patients are "Oxygen Toxic" or "Toxic to Oxygen"......something like that. What you explained make a lot of sense.
So the million dollar questions..........has he found anything that actually helps this?

 

[Sallysblooms]

Marg, hope you will post soon! I get my Carniclear from my doctor usually. You can Google it too. I ordered a new laptop, but for now I can't paste a site with my iPad. I just haven't bothered to learn on it.
Designs for Heath is the brand.

I am happy to say that I have taken another step in improvement with my POTS! Today I walked a lot and shopped AND bought (ha) at Chicos. I took my folding chair. Hubby took me and listened to a game in the car. He usually has to push me in my w.chair. I felt good going in myself!

This was after traveling to family for T.giving and home yesterday.

 

[dannybex]

Marg, hope you will post soon! I get my Carniclear from my doctor usually. You can Google it too. I ordered a new laptop, but for now I can't paste a site with my iPad. I just haven't bothered to learn on it.
Designs for Heath is the brand.

I am happy to say that I have taken another step in improvement with my POTS! Today I walked a lot and shopped AND bought (ha) at Chicos. I took my folding chair. Hubby took me and listened to a game in the car. He usually has to push me in my w.chair. I felt good going in myself!

This was after traveling to family for T.giving and home yesterday.

Hi Sally,

Thanks so much for your posts. I've been getting worse and worse lately...not sure if I can hang in there, but your post gives me renewed hope.

I used to take liquid l-carnitine years ago...probably last took in in 2003 or so, then for some odd reason I can't recall, I switched to caps. Haven't been taking it regularily, and it seems like if increase the fats in my diet, even the 'good' ones, then I pay the price big time (muscle twitching, poor circulation, pain in legs, temporary RLS, and the anxiety -- and 'air hunger' that goes with it).

So will try to get some liquid l-carnitine again (and remember to take the coQ10 more often -- just get so sick of taking supps!). Would like to get the Carniclear, but it seems so pricey. I know it's higher strength, so I suppose one could take less, but even at 1000mgs a day, that's only 12 servings per bottle. ???

But I have a feeling that the liquid may be absorbed better (quicker?)...is that what your doctor thinks? Also...did you ever try carnitine in capsules?

Thanks in advance,

Dan

 

[Sallysblooms]

Danny. I take just one tsp or less of Carnicler in the morning. One bottle lasts a while for me. You want to start slowly, small amount. Only because it can make you have energy. I feel great with less than one tsp per day. Take in the morning.

I have a regime given to me by my doctor. I was never able to get the right dose and brands on my own.

I take my supplements three times a day. I get sick of it too but it is important. These are all things I need. I have improved so much with them and being Gluten free.

I have POTS and CFS. I have been so ill but I am really improving.

Do not give up! It is a lot of work as you know, but you can feel better.

 

[dannybex]

Thanks Sally...

Danny. I take just one tsp or less of Carnicler in the morning. One bottle lasts a while for me. You want to start slowly, small amount. Only because it can make you have energy. I feel great with less than one tsp per day. Take in the morning.

I have a regime given to me by my doctor. I was never able to get the right dose and brands on my own.

I take my supplements three times a day. I get sick of it too but it is important. These are all things I need. I have improved so much with them and being Gluten free.

I have POTS and CFS. I have been so ill but I am really improving.

Do not give up! It is a lot of work as you know, but you can feel better.

Thanks Sally,

I got some Jarrow liquid carnitine a couple days ago...I should take some shouldn't I? I've been using up my capsules, taking more than usual, but should just switch to the liquid.

I've also cut back on my fat intake (even though I need to gain weight) and that has definitely helped with my RLS the past 3 nights, which suggests a carnitine deficiency. I've read that many patients with post-polio syndrome do really well on high dose carnitine and coq10, among other things.

Thanks again,

d.

 

[gregf]

I am genuinely impressed with the folks who have observed they have an oxygen problem.

There is a good line you can use when you are having an agument with someone a bit slow.
You say "gee you have a problem with contradictions dont you .... ".

ME is a contradicton. Our bodies are cutting off the oxygen to protect us. As Paul Cheney says "the fatigue is saving their lives". The last thing you should be wanting is more oxygen.

If you have a fire in the kitchen, do you add oxygen, or do you smother the fire ?

Our cells are not able to metabolise properly. Normally sugars go into the cell and in the presense of oxygen, are metabolised to energy for the cell. For us that is not working and theoretically that is enough to kill us. They have done this experimentally to dogs, and they die in 20 minutes.

So our bodies are doing everything they can to cut off oxygen in a number of ways.
We have a PFO, an opening between chambers of the heart so that stale blood goes around again. Also our blood holds on to oxygen not releasing it to the cells. There are other ways I cant remember just now.

So they have known this for a while. What is new and interesting is that while ME patients have a high chance of catching cancer, people with XMRV who do not have the safe guard of ME, will have an even higher chance of getting cancer then we do. What I think is suspected is that the cutting off of oxygen, is protecting us from cancer.

So next time you are breathless, say thank god for that, at least untill the XMRV is eliminated from your body. And that is science fiction talk, unlikely in at least the next 20 years.

If you want to understand this illness, just follow what Paul Cheney says. Read it, watch it, over and over. He is ten years in front of eveyone else. He realised we have a retrovirus and are suceptible to cancer in 1985. That he wasn't listened to is a crime, that we are only just beginning to comprehend.

Oh and by the way, you do not have CFS. You have ME. CFS is a lie, a psychiatric illness made up by the CDC. Announcements are being made now about ME/CFS purely so that the CDC can not escape legal justice. See you in court guys.

 

[pine108kell]

If our bodies are doing us such a great favor by starving us of oxygen, then why aren't we healing? It is easy to say we should avoid oxygen because it is protecting us, but this strategy isn't making anyone better, just prolonging the misery.

I would rather supplement oxygen and feel better even if it shortens my life considerablyh. I'm not here to just survive as long as possible in misery, I want at least a little pleasure in life. So, I don't thank god for depriving me of oxygen.

When Cheney comes up with some real solutions instead of telling us what not to do based on theories that have shown no evidence of helping actual patients, I might change my mind, but I'm not holding my breath (no pun intented).