Discussion in 'Alternative Therapies' started by BEG, Apr 23, 2012.
If you are on oxygen therapy, what benefits have you noticed?
I use oxygen with my vPAP, did a lot of changes at the same time, but doing better than I have ever done!
ggingues -- so happy for you. I'd really like to know about the other changes if you wouldn't mind sharing.
I am afraid to post the benefits I'm having in case I jinx them and they go away. It will be 2 weeks on Friday that I started the oxygen with a concentrator at night. I had 2 sleep studies which measured my oxygen level. It was low.
So I'll give it awhile and be back with my list if the benefits continue to pay out.
Something amazing and completely unexpected happened today after I had used the oxygen concentrator for about 1 hour in the late morning and 1 hour in the early afternoon. This was the first time I used it a 4 on the flow dial. I took my dog out, first time since Friday because I have had a severe throat infection. The first thing I noticed was that my legs were so light, about half the weight or less of what they usually feel like. (I used to describe it as a leaden feeling). It made me think to myself, if everybody is like this then why are people so lazy its so easy to walk! I still ran out of good energy after 20 minutes but my legs still weren't heavy.
The second and most unexpected thing that happened was that very quickly looking around the park it was like I had technicolour eyes. Everything was so sharp and so well defined, it was like I had put on the best glasses in the world. I couldn't believe it, it was like looking at the world in a new way. I knew my eyesight was bad and I have to wear glasses but it just felt likke I had these new brilliant glasses.
At the end of my walk I usually sit down and read a bit whilst my dog wanders around but when I got my book out and looked at the pages everything was so easy to read, the complete opposite of what it usually feels like!
So you can imagine my delight at what has happened after just 2 hours of using the oxygen concentrator but I do remember Dr Munro saying I would quickly notice a big difference and how right she was. I am so grateful to Dr Munro and the Breakspear if it wasn't for them I wouldn't have known I had such a problem.
I have also started the supplements for vascular support and will give myself the first B12 injection tomorrow which should also help. You can all imagine how optomistic I am that I can feel better, but I still don't fully understand what is actually CAUSING this huge problem.
My concentrator only goes to 5 Lpm. I have not used it much, I have some MCS and have trouble with the plasticy mask. It makes me sleepy during and after, so I want to try it at night, it could help my insomnia. I can't afford those nicer masks
My doctor has given me a script to do an oxygen trial - 6 litres/hour for 2 hours a day for 18 days. I went and picked up my first tank that was supposed to last close to 6 hours. It only lasted 3.5 hours so less than 2 days. I'm going to be going to an 'on demand' system which should make the oxygen last much longer. All this to say I only had about 2 sessions and it made a huge difference. I did the therapy Friday and Saturday and was out all day Sunday doing activities that would normally exhaust me.
BertieDog - my theory in my case is that carbon dioxide being produced by yeast in my gut is displacing oxygen and the oxygen therapy in turn will displace the carbon dioxide. Back to the gut again!
Hii Globalpilot and SOS
I am still finding the oxygen concentrator is helping me everytime I use it. I find that I use it for about an hour at a time. Because its a concentrator there is no cylinder which is good. I am doing better with the nasal cannula since I wash it out with water before use, the first time I used it I hated it. The mast is ok too but not as comfortable as I have to wear glasses.
That's very interesting regarding the CO2 being produced by yeast in your gut. How did they find that one out? I also have problems with a persistent mold in my gut which I think has been there for about 15 years after some severe gut infections I had.
It's an educated guess since I do produce a lot of gas and tested negative for hydrogen and methane via the breath test and hydrogen sulfide via Dr Kenny D's test. That leaves carbon dioxide as far as I know. I also have a test I can do using lime that Rich Van K gave me. I've yet to do it but I will using the boyfriend as a control.
I tested positive for yeast 'taxonomy unknown' by Metametrix. That rules out several common ones including albicans and many others. I have no idea what it could be.
Now that I know I have this high CO2 and also the Geotrichum mold I am going to email the Breakspear tomorrow and ask Dr Munro if this could be the cause of the high CO2 and not allergies as Dr Munro believes and if so would I be able to have Immunotherapy to eradicate it because anti-fungals haven't worked. She has written to my GP saying she recommended Immunotherapy for me( but she was thinking in terms of allergies which I don't believe are the cause of my illness).
I definitely have things like mild hay fever and know I am allergic to dogs, cats, horses, mites but these days I am not aware of a big reaction to these things unlike in the past. This is probably because I take a steroid every day for my adrenal insufficiency. I live quite happily with my dog who I have had since a puppy and I can visit friends who have cats and even if I touch them there is no reaction.
It does seem we need to be detectives. The way I view the oxygen is that its like a very wonderful sticking plaster and I certainly don't want to be without it now that I have experienced the benefits of being able to do quite a bit more in a day because of it.
Pam - how interesting about the geotrichum ... how did you find out about that ? Also, did you do a test that found the high CO2 ? I would really like definitive proof about that one for myself.
What is a concentrater ? Is that something that regulates how much oxygen you breathe in ? i used a simple set up - tank and hose and mask and wasted a lot of oxygen as it was coming out faster than I could breath it in. I know about an "on demand" system but that is a fixed cost/month. I'm looking for a system that will allow me to take in oxygen when needed but not waste any.
With regard to the Geotrichum it was found when I had a Comprehensive Stool Analysis done through Genova about 4 years ago. They mentioned suitable anti-fungals to eliminate it and I have been rotating them ever since plus probiotics and I can tell its still there!
A couple of weeks ago I had an Autonomic Nervous System test done at the Breakspear and this showed I had high CO2 throughout the test and low oxygen saturation under half of a normal person. The only time it was normal was when I was lying down doing nothing. As soon as my body was stressed by frequent breaths it dropped right down again. I was told I need to supplement oxygen for up to 4 hours a day and then after 6 weeks to have more detailed test done by Dr Juli to see what exactly is going wrong. They also said I had an irritable brainstem which is likely to be due to allergies, so I wondering about this connection with the mold and yeasts. Perhaps I am actually allergic to them so causing an issue with the brain stem .
With regard to the high CO2 during that test it is possible that the test was inaccurate on that day because my thyroid was slightly over and I had a high heart rate of 100 whereas it is usually around 76. I had to stay at a hotel the night before and I didn't sleep at all well and woke with a migraine so in general my body was a lot more stressed than it would normally be. However it proved I definitely had a dysautonmia.
The oxygen concentrator is a machine which changes the air that is in the room, you use either a mask to breathe it in or a nasal cannula. There is a reasonable Wiki article that I looked up to explain what they were. It looks like the cheapest lightweight model is around £700 or a bit less. The only problem I have is that the air is very dry that I breathe in and I think it would be better if there was a humidifier with it. I have actually got catarrh and sneezing since I started using it 4 days ago but I have also had a virus for 3 weeks so don't know if its to do with that. It all gets very complicated!
I don't pulse the oxygen and use a mask during the day as recommended by Jamie in her blog. However, I did notice that she said using the concentrator all night at 2 lpm has helped some people. It has helped me.
I have more physical endurance. I am performing activities I thought were lost forever. I get up and spontaneously do physical activities that in the past I would have to put on a to-do list and rest up for, and inevitably, they never were finished. I am closer to my old self than I've been since I became sick 11 years ago. I still have to rest between activities; I'm just performing more of them.
The absolutely best part is that the wasted, dying, and corpse-like feeling is gone. I almost think I'm remembering what a normal tired feels like. It's been so long, I'll never know for sure. My feet now hit the ground running when I awake. I no longer have to sit in bed for 1-2 hours before I can even think about moving.
I feel very lucky to have found a cardiologist who is open to learning about ME/CFS, who knew how to use a beta-blocker for POTS and which one to use, and insisted on a sleep study that found low oxygen saturation levels during sleep.
Thanks to all who left very interesting posts. Wishing you luck with your oxygen trials.
Bertiedog, there is a solution--which I asked JDJ to proactively post on her blog but she didn't. I wanted to help people (when I wrote JDJ about some mis-citations on her blog, that there had never been de novo cataracts from deep dive oxygen--I asked her to cite it correctly--and I gave her the citation--she put it up but first saying they developed after 150 sessions, but it was 48. Then she eventually corrected it after I told her she'd tripled the # of sessions. She never did put up the citations I gave her on oxygen toxicity to the eye and "reversible" myopioa especially with eyes open, and over 2.0 ata. I don't see why not.)
Anyway I also suggested to her in these backchannel communications that she recommend a hydrating bottle for the home oxygen concentrator for those with lung issues, so that the oxygen would not be drying. They use those in clinics and you can buy them for the home concentrator. You put in distilled water (ie sterile) and I recall you fill it 1/3 or 1/2 or something like that. You can call oxyhealth in California and ask their advice if you can't find it on the web. I don't know if it's rx or not. It attaches to the concentrator and then the tubing attaches to it.
She did not include that on her blog either. I actually did deep dive hbot at her clinic in 2003, but then I bought a home chamber, which she was against for many years, but now is positively oriented to. I don't know what to say about normobaric oxygen but it seems to be helping some, but breathing it in without hydration/humidifier for long periods of time could certainly irritate the lungs.
So get the hydrator. It will help! And maybe someone tell JDJ to put this stuff on her blog so that people can have ALL THE INFORMATION THEY NEED to have the BEST health outcome and make the MOST INFORMED CHOICES...
From jenbrooks: "Anyway I also suggested to her in these backchannel communications that she recommend a hydrating bottle for the home oxygen concentrator for those with lung issues, so that the oxygen would not be drying. They use those in clinics and you can buy them for the home concentrator. You put in distilled water (ie sterile) and I recall you fill it 1/3 or 1/2 or something like that. You can call oxyhealth in California and ask their advice if you can't find it on the web. I don't know if it's rx or not. It attaches to the concentrator and then the tubing attaches to it."
If you got your home concentrator via rx, it comes with a hummidifier (that's what the supplier calls it). If the concentrator shows up without one, just request it. One note about the bottle: it needs to be washed thoroughly every 2-3 days. My supplier recommends that it not be used. He has seen too many mold issues with the bottle due to people not cleaning them often enough.
I'm going into my 6th week of oxygen use without any lung effects so far. jenbrooks, are you referring to lung infections as well as irritations?
One more thing, the supplier recommended a room humidifier rather than using the bottle on the concentrator.
A room humidifier won't work. In clinic chambers everybody gets the actual water bottle humidifier, the oxygen passes through it. No, I'm not talking infections though I guess if you didn't clean your bottle or didn't use safe distilled water, you could get something. I'm saying the oxygen is very drying and can irritate delicate lung tissue especially in those with asthma or copd etc.
It sounds as if your problems are very similar to mine. I also have POTS or at least PTS because my bp doesn't drop it tends to go a bit too high because of a high pulse when my body is stressed by being upright and doing physical exercise. However that has massively improved over the past week since using the oxygen concentrator. Like you when I get up in the morning my legs feel almost normal but I have problems after eating first thing because of adrenal insufficiency which can still make me feel a bit rubbish first thing. However that improves as the morning goes on. I have to be careful with caffeine in tea in the mornings because it will tend to bring on symptoms.
It makes me feel like I don't have ME/CFS but dysautonomia with adrenal/thyroid insufficiency. Still a lot for a body to deal with but the betablockers and oxygen make such a huge improvement its truly wonderful. Glad that you are feeling so much better too. I only found out because I went to a private hospital here in the UK. I am not sure that the NHS recognise dysautonmia yet, there is only one research facility in Newcastle UK so it still looks like one has to pay for treatment if though the illness is demonstrable and no way can they say its psychology.
Thanks for taking the time to inform us. It would seem that after a week of using the concentrator I only need to use it in 30 minute bursts x 2 or 3 each day so that isn't causing the drying issues now, only if I use it for about an hour. I am about to purchase my own unit and will probably go for one that doesn't incorporate a bottle because it is much lighter and cheaper to run.
I would also be a bit concerned about getting bugs more easily and I do have 4 Herpes type viruses that are abnormal in my body so would prefer not to do anything that might make things worse bug wise.
"It sounds as if your problems are very similar to mine. I also have POTS or at least PTS because my bp doesn't drop it tends to go a bit too high because of a high pulse when my body is stressed by being upright and doing physical exercise. However that has massively improved over the past week since using the oxygen concentrator. Like you when I get up in the morning my legs feel almost normal but I have problems after eating first thing because of adrenal insufficiency which can still make me feel a bit rubbish first thing. However that improves as the morning goes on. I have to be careful with caffeine in tea in the mornings because it will tend to bring on symptoms.
It makes me feel like I don't have ME/CFS but dysautonomia with adrenal/thyroid insufficiency. Still a lot for a body to deal with but the betablockers and oxygen make such a huge improvement its truly wonderful. Glad that you are feeling so much better too. I only found out because I went to a private hospital here in the UK. I am not sure that the NHS recognise dysautonmia yet, there is only one research facility in Newcastle UK so it still looks like one has to pay for treatment if though the illness is demonstrable and no way can they say its psychology."
Hi bertiedog and thanks for posting. I wondered why after eating breakfast I do notice a bit of flagging energy. It does improve, however, like you said, as the morning goes on until I hit my stride at 11:00 A.M. I'm so happy you've noticed improvement, too. I was hesitant to post because this "new" sick feeling is so difficult to describe, but you were very helpful.
Yes, always the caffeine is to be watched, carefully measured, and totally monitered.
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