Millie
Forum Replies Created
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I don’t think what you’re doing is a good idea. Check with your doctor. I was told to take it with protein—-peanut butter rather than jelly. I have been on 100mg twice a day for 2 months and just started to raise my dose. I’m taking 150mg in the am and 100mg in the pm. So far so good. Next week I will go up to the 150mg dose twice a day. I’ve heard horror stories about side effects but i know that i need to be on the maximum dose. Let us know what your doctor says .
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Well, Chuck, be sure to let us know what your GP decides about zinc. I don’t think there would be a noticable difference in only 12 days. Sometimes things are changing inside of our bodies that we are not aware of. Let’s keep up our hope for that positive change.
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I have been taking 30mg of zinc on a daily basis. I have no idea if that dose is too high or too low. I recall reading somewhere that too much zinc can cause other problems and the 30mg was recommended. Does anyone know what the proper safe dose is? The article doesn’t mention that.
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My doctor is a pulmonologist and knows nothing about supplements. He tells me that he is a medical doctor and not into natural medicine. So, I can’t get any answers from him about supplements for PF.
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I am 82 and was diagnosed in December 2021. However, I’m told it showed up on an x-ray I had 3 years ago. I am on oxygen 24/7. At first it was scary. However, my life has not changed much. I’m out every day enjoying life as I always did. I’ve been on ofiv for a month now but will move up to the 150mg next month. No side effects on the 100mg’s. As this progresses things will change but I want to enjoy every day that I am able to go and do. I don’t worry about tomorrow or next week or month as I can’t change what will happen.
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I didn’t realize you were using it for that length of time. Please don’t be so defensive. I’m searching for reliable information on this. Dr. Axe is a well-known and widely respected doctor. Do you use the serrapeptase in combination with the ofiv? That, for me, can be the game changer. If so, what is your dose of the serrapeptase? I was doing the deep tissue massage on my back and the cupping on my back because they, also, help break up scar tissue. It was my little experiment to provide a little bit of a kick to the serrapeptase. Some things are a little scary for me because I’ve never been sick or had any major illnes until this.
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I was taking serrapeptased but stopped it to begin ofev. It seems that they are both blood thinners and I was afraid to be taking both at the same time. I liked serrapeptase very much for it’s scar dissolving ability. My doctor never heard of serrapeptase. I was also doing deep tissue massage on my back plus cupping. My dose was 80,000 u 3 times a day. Has anyone taken both at the same time with no ill effects. I’d like to hear about it. I only took this for 6 weeks—-so not enough time to evaluate its success. I would say 6 months would be a better timeframe.
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Hi Jim:
Wow. I’ve had covid plus 2 boosters and am not aware of any decline in my lung function. I guess ev erybody reacts differently. I am 82 years old and was diagnosed in December 2021. I had it for 3 years without any symptoms prior to diagnosis but was never told. My pulmonologist tells me that I could have had it for many more years but with slow progression. Thanks for sharing the info on your journey. I was told that I have severe scarring but no honeyhcomb pattern. I guess that is a good thing. Good luck with your future journey and keep us posted. We care.
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How many mg are you taking?
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My pulmonologist tells me that he doesn’t know anything about supplements. I don’t see my GP for months and don’t know if she would know either. Good luck and be sure to let us know what they say.
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Hi Charles—-I love your sense of humor. Never lose it. So, I’m waiting to hear back from you as to what you find out. What is your take on the zinc/copper combo pill?
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I’ve been looking at zinc/copper supplements. What I’ve seen is 30mg of zinc combined with 2mg of copper and 50mg of zinc combined with 2mg of copper. They say that zinc depletes copper so the combo is better. Then I read somewhere that you are not supposed to take the two supplements together. I’m confused. Can someone straighten me out on this?
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Has anyone tried Metamucil for the diarhhea? I was very surprised when my doctor recommended it as I thought it was only for constipation. I was told that it bulks you up and it really worked for me. Give it a try and let me know how it goes.
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I started taking ofev in March–was diagnosed in December 2021. My doctor sent in my tax return with the RX and I qualified to receive ofev free. I guess that is why he chose that drug over espret. I am on 100 mg and will be moving up in my dosage. I tolerate 100 very well. I don’t know if it is effective in controlling the fibrosis. My doctor tells me that the trials done were on the 150mg twice a day. I suggested to my doctor, and he agreed, that I take one 150mg of ofev once a day and one 100mg of ofev once a day to see how well I tolerate it initially. If all goes well, I will move up to the 150mg twice a day. I’ve been taking 30mg of zinc daily also. I have severe scarring. The fibrosis showed up on an x-ray I had 3 years ago but I was never told about it. I am on oxygen 24/7. However, I feel very good overall. I have enjoyed excellent health and am 82 years old. I love swimming and did laps 3 days a week until all this happened. That is one thing I can no longer do and miss it very much. I hit the gym every day as I always did and exercise with oxygen. On 2 liters my numbers are in the 90 to 95 range. I take the oxygen off in the evening while watching TV and my oxygen level stays in the 90-95 range.
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I’m doing pulmonary rehab now. I have always been very active physically so it has been easy for me. I’d try the pt at home first and then, if you can, go to the rehab that was recommended. You can start slow. You will be monitored for your blood pressure and heart and lung numbers by the staff several times during your session. They say that exercise is one of the best things you can do for yourself and it is free. Just try to do as much as you can without overdoing it.
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So what is the benefit of serrapeptase for you? You also take another enzyme, don’t you. It starts with the letter “n.”
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This is for you, Steve. After taking serrapeptase for over 5 years, have you found that it has reduced the scarring in your lungs? I went off the serrapeptase after 6 weeks because I had the opportunity to try ofev free of charge. It is a very expensive rx otherwise. I need to give it at least 6 months or until my pulmonologist does another scan to see how it is working for me. In my case, time is of the essence. I had this PF without symptoms for at least 3 years before I became aware of it. I am old and feel that I don’t have a lot of time to play around with experiments of my own doing. Would love to but as we all know, we have to make tough decisions and do what we think is in our best interest.
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That is where my concern lies-taking both ofev and serrapeptase together. Is there anyone out there who does this. Please let me know if you do and if you’ve had problems from doing so. Thanks for the info Steve. You have ben very helpful.
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My pulmonologist knows nothing about it. Dr Axe, a naturopath, says it may increase the risk for bruising and bleeding especially when taken with a known blood thinner which ofev is. What is your source of information on this? Does anyone else have any comments or knowledge.
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I was diagnosed in December 2021 but was told that it showed up on an x-ray I had in march 2019 but I was never told about it at that time. My doctor told me I could have had it for even longer. It has progressed to the point that my oxygen goes into the 80’s when I walk so I have to use oxygen 24/7. I am in excellent health otherwise but am 82 years old. Used to lap swim 3 times a week and am very active. I really have no symptoms. I can stilldo house work and yard work with oxygen. .