Anyone on oxygen

MEG

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About 18 months ago my doctor noticed my oxygen saturation levels were decreasing. They go as low as 84. Normal is 96-100 I occasionally get VERY short of breath. In the ER, on 4 liters of oxygen, nasally I was still "desatting." (Low oxygen)

I am now on 2 liters of oxygen 24/7. One doctor told me NOT to take my oxygen off even if I felt better...she is one of our well kow gals!

I am very fearful about what this new development means, in terms of long term survival.
NOTE: I DO NOT have asthma, emphysema (COPD), fibrotic lung disease. Both my CFS doc and Pulmonary doctor attribute the lung dysfunction to CFS.

Help
 

August59

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You just hang in there because these latest developments from WPI may possibly contribute some information that could help. There are new developments almost daily right now and certainly a time to be optimistic.
 

*GG*

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You just hang in there because these latest developments from WPI may possibly contribute some information that could help. There are new developments almost daily right now and certainly a time to be optimistic.
I would agree with this. I do Oxygen only when I sleep and I do 2L/min also. I asked my Dr for this though, I had sent him in my results from my sleep study last fall, so he had the docs to have insurance cover it. I had a follow up with the sleep Dr. and he told me that he doesn't think that I need it, it was only because I have obstructive sleep apnea. He is supposed to send my CFIDS dr a letter, not sure if that will have any impact.


FYI I use an Oxygen concentrator instead of messing with tanks!
 

xrayspex

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ok but here is the kicker, I just posted on another oxygen thread about this....Dr Cheney has evidence that this bad oxygen feeling is really because in cfs we have oxygen "toxicity" and that too much o2 is getting in probably due to a diastolic heart issue due to a little hole in our hearts, he does an echocardiogram a special way to demonstrate it, I had that done and he thought i fit the bill. he says migraine sufferers with this hole in heart, pfo, get it mended in surgery but he has seen that not go well for cfs and doesnt rec the surgery and he feels that most cardiologists will not be able to diagnose or understand this. he doesnt rec oxygen supplementation.

I dont know if he is right or not but i did feel worse when he gave me oxygen and it flared me up.

I wish there was a mainstream way to figure it out. It feels like suffocation to me like I need more oxygen but I dont know if cheney is right. He has been studying this 25+ years. Stem cells is his ultimate recommendation, his other treatments didnt help me, hawthorne paste a little bit helps. see the other oxgyen thread I just bumped up tonight for more info from others. (well cheney having me work on gut issues more helped some but not a cure).
 

xrayspex

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I just googled pfo

http://www.mayoclinic.com/health/patent-foramen-ovale/DS00728/DSECTION=tests-and-diagnosis

and its a bummer, they do have tests to try to find it, but at first they say its not uncommon to have it and that its probably fine to have it, but if you do suspect reduced blood flow with it they arent sure surgery is a good idea and it didnt look like they have any other ideas what to do about it. they are studying it.
great, another weird aspect of cfs that is also controversial and hard to diagnose and treat and they could act like you are a weirdo for pressing the issue, so tired of this......guess we are really in the dark ages. Its so related to politics, like if we wouldnt have frickin bush and cheney running the country for the last decade we wouldnt have lost 8 years of research on stem cells which right now may be one of ours and many ill people's best bet. what a bunch of b.s.
hah sorry, very crabby this week from feeling like I can't breathe!
 

taniaaust1

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MEG... i dont know if you know but Andrea Whittemore (Annette Whittemore from the WPI daughter) was on oxygen. She's apparently right now doing MUCH BETTER due to some treatment trial for XMRV. People were saying at that she was looking good at the WPI opening.

When XMRV treatments go public (hopefully not far off now), many will be finding themselves in a far better situation then they are in now
.......

Dr Cheney has evidence that this bad oxygen feeling is really because in cfs we have oxygen "toxicity" and that too much o2 is getting in
xrayspex.. sounds like MEG is having much more issues than "bad oxygen feeling" or just a feeling that she cant breath. She said her oxygen level was at 84, That is very poor! If she dont have treatment, her cells arent getting enough oxygen.. may starve and die. Not treating one who really needs treatment may lead to permanent brain damage.

She's got far more issue then just feeling like she cant breath (air hunger, which feels like suffocation, which many of us do get).

Sorry MEG for this dismal post to xrayspex
 

xrayspex

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Meg I am sorry too of course
I came to this thread because someone came to the other thread that is about oxygen hunger and told us to come here because they thought it was same issue, its all related even though we have a continuum of some of us are constantly in bed and others can be up for awhile during the day some longer than others. I certainly hope tanna your last sentence was not an attempt to apologize for my post???? I can speak for myself. This 'oxygen hunger" I have may not have me on oxygen 24-7 but it is certainly more than a minor inconvenience, I feel it has been the tragedy of my life and to me its huge. Why compare? Its all relative, there is always someone in a worse or better situation. My situation prompted me to drop 10k on Dr Cheney I was so desperate and I am not a wealthy person and don't have some rich huz to support me.

Anyway, I think Cheney is on to something and that it very well could relate to your situation Meg so beware in case what you are doing is contraindicated, have you felt better on o2, the same, or worse?

Also tonight when I tested myself when I was standing up with a pulse oximeter it said it was at 86, goes to 98 when I am rested and sitting still, I am going to tell my doc about it.

Also if you guys go to Dr Bells latest news letter he refers to the work Cheney has been doing around this w/echocardiograms, I had one of those with him.
I think the million dollar question is if the oxygen problems CFS folks have and the heart issues blood pressure issues etc is it because of too much or too little oxygen. that is the question no one seems 100% on. A regular cardio guy is clueless, that is what I am trying to tell you. even the mayo link I provided is lame. Here is the other thread here about it expounding on what I said, other ideas what to do:
http://www.forums.aboutmecfs.org/showthread.php?3147-Decreased-oxygen-saturation-upon-exertion

cheney said hyberbaric oxygen chamber is contraindicated in me and other cfsers. He admits its a tricky call. I did feel worse when he administerd an o2 mask as part of the test with his echo its part of his test and it shows most of us look worse on the echo when he gives o2, but no one else is looking at it the way he is, he has an excellent echo tech helping him.
 

taniaaust1

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hi xrayspex.. glad you realised that MEG has more then just the common CFS/ME oxygen hunger (which is quite aweful feeling and can be scary).. I know as I've got that badly in the past.. I spent one christmas day in bed with it, really thinking i was going to die as i felt like i was suffocating, I felt like I couldnt get enough air (but didnt want to spoil my families christmas party by telling them i needed to go to hospital).

Oxygen levels are often measured at hospitals (in Australia dont know if they are read by same device elsewhere) by that thing they click onto the finger and gives out the blood oxygen saturation. My own oxygen level with that is 98 or 99 (and i have quite bad ME), which is good reading on that test. MEG was refering to that level.. her actual blood levels, being way way down. ahh yeah.. i'd think that would be the same as a oximeter?

I certainly hope tanna your last sentence was an attempt to apologize for my post???? I can speak for myself
no it wasnt.. i was appologising to MEG due to bringing up such negative things about her own current situation. It was an appology for myself.
..................

All of us with ME do actually drop in our oxygen levels when we over do it (over excert). This has been shown in a study and there is a chart on that and the actual affects of exercise on us, in the Canadian consesus defination book. This is why we NEED to take care with exercise.. so we arent dropping our oxygen levels ect (a normal persons body gets increased oxyen during exercise but we dont and hence damage may be done during exercise). Those of us who are affected in this way that blood levels levels are constantly very low... they are the ones who often need oxygen, fortunately not many of us find ourselves in that situation

nods.. everyone is desperate

good idea to talk to your doctor about that reading.. you could be told to stop exercise before it gets to that (or possibly that reading isnt too bad if only for a short time???).
 

heapsreal

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cardiac problems can also cause this, refering to dr lerners studies where he has proven poor cardiac function from herpes infections ie ebv, cmv, hhv6
 

MEG

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Thank you for all of your information. Last week I had the echocardiogram/bubble study looking for that "hole" on our hearts Cheney talks about. I do not have structural heart issues. I do now have some diastolic dysfunction...my left ventricle is not working quite up to speed.

I think I must have oxygen, even though I don't like it, because my oxygen levels plummet without it...down go my saturation levels,I get confused, heart palpitations (VPC's), and Hunter Hopkins has seen a case where a girl didn't catch the"feeling" in time to put her oxygen back on and died....UGH..frightening.

Interesting info on oxygen toxicity....
so much to digest.
Thank you for all the info everyone....comforting to know you all are here.

I am having arterial blood gases done this week. There is much to balance metabolically when someone is on Oxygen...

I do worry about you all out there with that air hunger feeling...take care as mine progressed to this critical point.
 

MEG

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ggingues:
Thanks..I have an oxygen concentrator. E tanks, dozens of B tanks....and I am scared because my body is so O2 dependent.....
we loose power a lot so I had a house generator put in....

May have to move off my mountain and into civilization....YICK.....I am a country girl

Feel blessed to have medical care....
 

MEG

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Hearpsreal
Where can I get more info on Dr Lerner? I have high viral load...Herpes, ebv, cmv (primary infection in 1986during a pregnancy)hhv-6

Anyone know if Valcyte might help this
 

heapsreal

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hi meg, i have never seen dr lerner but have read alot of his work, here is his site http://www.treatmentcenterforcfs.com/ , valcyte probably would help, but maybe try something not quite as rough on the system first. I have cmv(ebv shows up some times, i dont know why??) and have heard from someone else here with hhv6 and have had good results with famvir, its suppose to have a broader range of action and is quite safe to take for long periods of time, which u will probably need too. I didnt respond to valtrex but i think thats because i had multiple infections, if it was just ebv then valtrex would be the drug. SO see if u can get famvir and give it 6 months and see how u go, if not alot of improvement then see your doc about valcyte. http://www.treatmentcenterforcfs.co...ment-of-142-herpesvirus-patients-with-CFS.pdf
 

heapsreal

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q10 supplement are probably more beneficial for cardiac problems then for cfs. Alot of research on q10 is about how it helps alot of cardiac problems especially heart failure where shortness of breath is a major symptom. In heart failure the myocardium isnt strong enough to pump enough blood around the body, i have read where q10 has helped alot of people in this situation.
 

*GG*

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ggingues:
Thanks..I have an oxygen concentrator. E tanks, dozens of B tanks....and I am scared because my body is so O2 dependent.....
we loose power a lot so I had a house generator put in....

May have to move off my mountain and into civilization....YICK.....I am a country girl

Feel blessed to have medical care....

Is the house generator not sufficient? Yeah, I am not a city slicker, but not sure if I would call myself a country boy either?!
 

Tony

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Hi Meg,

There are patients here who are also using oxygen as part of their treatment. One comment was they sleep better and have less pain. So obviously extra oxygen isn't bad for everyone, just those who don't need it.