Hi everyone! I'm new here and want to share a couple things we have done, that you may not know, and I want your feedback.
First, my wife was diagnosed by her GP w/COPD but referred to pulmo in late 2015. After Spiro, and PFT (pulm funct test), bloodwork, etc diagnosed mild fibrosis, emphzasima, and COPD. Symptoms: shortness of breath, tired, unable to keep O2 in 90+% unless she deep breathes while resting. O2 24/7.
However, sometimes her O2 will jump up to 94-95 while sitting. Then it will drop back down. I questioned pulmonologist, reasoning if her lungs are deficient, why does her blood O2 jump from 85 to 94 at times? And she has no whizzing? He couldn't explain.
After a bunch of research, here's what we first tried: I mixed up a 1.5% food grade hydrogen peroxide and used a small pump sprayer (like those to spray for sore throat) and exhale as deeply as possible, and while inhaling pump the sprayer rapidly 4 or 5 times. I tried it first (her guinea pig) and I coughed a couple times. She did too. But her O2 was between 84-86 before, and within 20 seconds after, her O2 started climbing, up to 97-98%. And stayed that high for almost 3 hrs. So she has been doing this "as needed". She always felt better and was almost able to exercise like normal.
At our next pulmonologist appt, we showed him what we were doing. At first his eyes were wide and he said he did not recommend that. But when my wife showed him in the room, he was shocked and said "Well, I guess you can continue doing it, but I would not do it long term."
Side note: When my wife did all the PFT's, they always use some sort of inhaler to compare without vs with and there was always no difference or a slight decrease in volume with the inhaler. So she does not use them, besides all the side effects.
And 2 separate cardiologists checked her heart for all sorts of conditions, including PFO and positional and her cardio is fine.
Update (Sept 2019): After a hi-resolution CT scan, her pulmonologist now says she still has mild fibrosis, but no emphazisma, nor COPD. But her lungs are inflamed, and something is causing it, like pollen, bath oils, or pet dander. I asked could a virus/bacteria cause inflammation? And he said sure, but she would have mucous or congestion, or some other symptom too. So I asked could it be a "stealth microbe" (research the list of these). Look at rawlsmd.com and his experience with Lyme disease. "Maybe" was his answer. Great! We can help her body with inflammation!
After a ton of research again, here's what we are going to do, according to a protocol I received. Please search and read all of it. "Orthomolecular Medicine News Service, Oct 25, 2019. Reboot Your Gut Optimizing Health and Preventing Disease with Microbiomes. Opinion by Thomas E. Levy, MD, JD"
He uses a nebulizer (which we have), magnesium chloride, vitamin C, and DMSO. All these are anti-inflammatory, anti-microbial agents. And the mg and VC are vital nutrients most people are very low.
Le me know what you think. My ingredients will be here next week.
Again, like all of us on this excellent forum, receive no monetary gain. We all receive a happiness helping others!!!! This is our reward!! Knowledge is power!! My prayers to everybody here, as we all have problems. And many thanks to all of you for your questions and answers!
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Grandpa-Chuckie
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Lots of debate over the use of hydrogen peroxide - I wonder if the inflammation in her lungs could be caused by the use of that? copdfoundation.org/COPD360s...
We never used or even read about using H2O2 being used internally, only externally. And just the thought of using H2O2 internally sounds really bad, because the way it bubbles on open cuts and scrapes! But we started researching ways to improve COPD, etc, and H2O2 kept popping up. Then when I read many MDs are suggesting to use it, well, I tried it by drinking diluted in water. I did not notice anything good or bad. But when my wife tried it, she felt better (easier to breathe--subjective).
Then within the last year she considently "inhaled" 1.5% FOOD-GRADE (regular H2O2 has additives). We demonstrated my wife using it to her pulmonologist and he said keep doing it if it helps. It definitely does as we can see it with the oximeter. This is several years after the "official" diagnosis-fibr/emp/COPD. So the inflammation was there before starting the H2O2
Update:
Hi Jocopd. I finally had a chance to read your reference link. Look at the people who used H2O2 with success. Like any product/device we take or use, there are hazards and risks, especially if used unwisely. There are dangers in prescribed medications when used properly. Case in point, here's an article in US News: health.usnews.com/health-ne.... They site over 128,000 people die from doctor prescribed medications.
I know for a certainty that my wife would be dead if we had continued on a prescribed med, even as I ARGUED with the licensed physician on the phone as I described the adverse reaction (Johnson-Steven Syndrome) she had. He flat out told me it does not occur with the drug he prescribed, and refused to listen to any one of several medical references I tried to read to him. We STOPPED the medication AGAINST his direction. Two days later the pharmacy called us and told us to stop taking the med immediately if any symptoms were expressed (they were). It had a "Black Box Warning". You can see I'm passionate about this because my wife's life was a stake! She's alive today and doing better today than at that time.
Conclusion: use common sense. Doctors are not all-knowing. Do we wonder why their profession is commonly called a "medical practice"? How much practice do they need!
Do your research and do what makes sense. Try things as per instructions with caution. Not all medications work the same for everyone. We are all different. Listen to your doctor and ask questions and research what he says. There are many fine doctors, but their are others who are not. Just like any profession. We personally will continue using food grade H2O2 (diluted to 1.5% for my wife & I can handle up to 3% as needed-and yes we purchase our H2O2 at the 35% and it is dangerous) because it works for us. It may not work for you.
Note: That article failed to mention that H2O2 that is NOT food grade should never be used internally.
The last test our pulmonologist wanted to do was a lung biopsy and we said no because the only thing the test would do is definitely say there was inflammation. Any microbe would have to be looked at specifically. In other words, they have to know the microbe first, then look for it. With a list of like 26 stealth microbes, he said it's not practical to test for each one. And testing is not always definitive. So why do a biopsy with the associated risks.
Red Sox, you are correct. Long story short. Nov 2015my wife had a headache for several days that would not go away no matter what meds. I called hospital and they said bring her in. After couple days, they said it's her low O2 because everything looked good and her headache went away after a few hrs on O2. They ran some tests (no pulmonologist that we know of) and said COPD. After 5 days, they recommended she see her GP w/ their test results.
Her GP said it looked like COPD and referred to 1st pulmonologist, who did absolutely nothing but prescribed all sorts of inhalers/meds, with no improvement and a couple bad reactions. We switched to a different pulmonologist, who was the opposite. He ran some same and some different tests (walking, spyro, CT, ultra, x-ray, blood, PFT, etc) and diagnosed as fibro/ephz/COPD, as explained earlier.
He also tried various meds/inhalers and same results, no improvement. He referred her to cardio because he could not find the cause of the low/high O2. 2 cardios found no circulatory issues but said it was pulmonary. Back to the "good" pulmo. Then by process of elimination with focusing on each diag, and finally the high resolution ct scan showed the inflammation. Nothing else could account for the low O2, let alone the changing O2 (low/high).
Then finally we told him about the inhaling via nebulizer w/vit c/mg/dmso. (he already knew about the pump spraying w/H2O2 w/ his doubts it was helping, until our demo) and he told us he would not recommend that, but said nothing else worked, so try it. We were getting better performance w/ the pump spray H2O2 is the only reason he agreed, on the condition we keep a diary and call him immediately if we noticed any negative effects. He actually prescribed our nebulizer to use instead of the pump sprayer, but we can't carry it around while traveling, but the sprayer she has in her purse.
Grandpa-Chuckie, My pulmonologist said the only way to definitively diagnose emphysema is with a biopsy. I don't blame your wife for saying no. I was "lucky", the thoracic surgeon did one while he was removing a lung lobe for cancer.
I have a question. (I love this forum as everyone is asking/answering questions, and all to help each other! Love it, and you folks!). Is your O2 levels always low, even when resting? Do it ever go into the 90% + range? (Without supplemental O2)
Hi RedSox, I hope you and yours had a wonderful Christmas and New Years as well. My pulmonologist said that the PFT I had (pre-surgery) was "within normal range", I don't think she even looked at my last CT scan. I had another PFT last year, (post LC surgery) his time it showed "some restriction", but at that point she wasn't sure if it was due to the emphysema or the missing lobe. She is the first pulmonologist to tell me that the only way to diagnose emphysema was a biopsy.
My old pulmonologist (from about 5 years ago) told me my CT scan looked fine, and PFT was normal, that I did not have emphysema. I was pretty happy until I saw my PCP and told him the good news, to which he replied "sorry, but he is wrong". He then showed me the damaged lung tissue on the scan, and the scale they use online to measure the PFT results, and said it showed mild restriction. He is the one who originally put me on an inhaler after seeing a CT scan of my lungs in late 2013. I agree with you, a CT scan should be enough for diagnosis (all mine say tissue damage from emphysema). I have figured out kinda sorta (maybe) that even if a Dr says you have emphysema or whatever lung disease you have, they will not say you have COPD unless your PFT shows marked restriction in lung function. I am sorry, but that is really stupid because COPD is just an umbrella term for any lung disease that makes breathing difficult (I know I'm not saying that right, but hopefully you understand my meaning). I also had a blood test a few years ago that showed I am retaining CO2.
My O2 level only drops when I am sleeping. I have sleep apnea which causes my breathing to get very shallow, which makes my O2 level drop. I can no longer use my cpap machine, so I use supplemental oxygen overnight.
Hey RedSox. Thanks for the info on the PFT numbers. I don’t have them with us as we are traveling. I’ll look them up when we get back to NM in about 2 weeks. This is the first time anyone has mentioned “Restrictive” vs “Obstructive”. I’ll look at the many PFTs. I just know her pulmonologist said it’s not getting worse. We are due for another in April/May. Last one was in 2019. I remember seeing the letters and numbers but can’t recall. Thank you for the info!!!
KatherineK, what is the lowest O2 number at night vs day? And highest for day vs night? Without O2? If they won’t measure w/o because it goes too low, I’ll take it w/ O2.
And does it fluctuate while in a steady state of rest?
Grandpa-Chuckie, I wear a watch that monitors my breathing, heart rate, O2 levels, etc. Without my cpap machine my O2 level would drop into the 80's and a few times went as low as 78%. Now with the supplemental oxygen the lowest it goes down to is 96%. During the day w/o supplemental oxygen it usually stays between 96 and 99, depending on my activity level. I did a 6 minute walk test with my PCP a few weeks ago and it dropped to 86%, but when I sat down to rest, it went back up to 98%. So at least for now, I do not need to use the oxygen 24/7.
RedSox, So I take it the Bills lost? Sorry but I don't follow any sports, never have. I am sorry they lost, but I agree with you 100%. In the grand scheme of things, it's only sports, only a game, they will all live to fight another day.
The lowest O2 that is dangerous at any time is 88 and lower. At that rate, for extended times, you begin to damage cells in your brain and other necessary parts of your body due to lack of oxygen.
Many of us use fingertip pulse oximeter which are available from any pharmacy or walmart etc for $10 and up. These help us check our oxy level so we can put on our oxygen if needed.
People who are prescribed oxygen for night are dropping to the 70% range when sleeping. The only real way to check this is to do an overnight test. The doctor orders a special wristband and you sleep with that overnight then return it to the doctor or the company that brought it to you. They read it and put you on oxygen at night if its low.
Many people think if they just check the oximeter right when they wake up that they will have the reading but that is not accurate as your breathing changes the minute you wake up. When sleeping your breathing becomes much more shallow so the oxy level can drop. This is also the reason you should not use pulse or POC oxygen at night - your breathing does not have the power to inhale the pulse put out by those machines.
There is a cpap/oxygen combo machine that you can get that will give you the needed oxygen while doing the cpap job of pushing the air into your lungs. The doctor should be able to set that up. Remember cpap machines do not add the needed oxygen to your lungs - they are just pushing air. Only oxygen machines can raise your O2 levels.
Exactly right, Jocopd! My wife needed her CPAP with supplemental O2 until we discovered her anti-anxiety med was causing her shallow night breathing. Her meditation, yoga, and nutrition together have allowed us to stop the med. (after Dr consult). She no longer needs the CPAP. Over-night sleep monitor showed she still needs her supplemental O2. But improving vs one year ago.
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COPD
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