[Charles]

Hi ya’ll, it is Chuck. For some reason i have not been receiving any of all this conversation for a month or more. I don’t know why! However, i did see a new Pulmonologist and asked her about the Cedar Sinai material also she had me do a CT and she never got back to me. I called the office a couple of times and left a message but never heard back. So now i have contacted a new Pilmonologist and am waiting for my appointment to see her. That is if i don’t croak first. However, i have been on 50 mg of Zinc for over 60 days and i actually feel worse. Breathing seems harder. So i have stopped it and will wait for my new pulmonologist advice. It’s a bitch when your doctor doesn’t get back to you when you have a fatal disease. It’s like they just don’t care if i die or not. Some doctor, huh! If anyone would like her name and address it is, Laura Ann Lubarsky with Dignity Health in San Luis Obispo! Funny huh! 08/30/22

[Charles]

Well hi to all of you who are having all of these problems. I to can join in with all of my heart and brain. First let me address the doctors portion of questioning. There is no one doctor who knows what to do or how to do it. They all differ and that is a real shame. What i have just said is of no help breathing but it may help you understand that we are all at the mercy of many doctors. I agree with Pete about doctors. As far as a breathing device, i have and like, the unit from SuperCareHealth. (1800 206 4880 ) My portable is fairly light weight and put on two liters it will last six or more hours. However, it does not go to 5 liters, only 4. I also have an in home unit that supplies constant oxygen, and i am also happy with it. Not to mention, that when there is a problem, they are on my doorstep asap. I have had this Lovely disease for 9 years now. Much longer than i was told i would last when i found out about it. However, i like most of you, when i exert myself as much as going pee pee from my sitting in the living room watching T V and my oxygen is 92 to the bathroom and back, i drop to the low 80s. However, i do recover in a matter of minutes. When i get back to the low 90’s, i sometimes take off the oxygen and can go for hours without. I really don’t think that there is anything that can be done about that. Sorry to the faint of heart, but it is called dying. Back to the doctors again. There is not much we can do but follow what they say. What are the options? None! I have recently started the a fore mentioned lip breathing and of course, the new miracle drug, ZINC. So far no noticeable difference. Hope that this all helps yu cope with what we have. To sum it up, it’s a bitch!!!

[Charles]

Hi guys! Chuck here with questions and some information. First the question is, if the conclusion from the Cedar Sinai says that there is a reduction in our IFP, then why are the few people above saying that they have been taking Zinc for years and do not see any change? I am very familiar with Cedar Sinai and respect them a lot. So can anyone clear that up a bit for me? Yesterday i saw my GP and she checked me out and saw no difference in my health situation from a doctors point, not a pilmonologist view. She OK’D me for using the 50 mg zinc daily, which is now at 14 days. However, as Millie said, it’s a very short time so let’s see how i feel in a couple of months. Although i have noticed one thing different. I seem to be a little stronger. I have been getting quite week and lately that has changed. Zinc? Who knows. Just thought that i’d mention that. As far as the Covid thing goes like Jim said, unlike Jim, i have had my two shots and the two boosters and do not feel that they have interacted with me negatively at all. However, i had no reaction from any of the four shots at all, except fro the last booster i got. I did have a little pain in the arm that they stuck the needle in. But let me add that in my 80 years of being a member of the earth, i can’t remember having a cold except for maybe three times, and i have never had a headache. I don’t get the small stuff, i only get IPF, heart attacks and the like. Now that brings up a new subject. What if i was to get cancer and it was in my lungs. Would the cancer eat away the IPF scaring? Or would i have two pain in the butt problems to worry about! Very interesting huh! I am still waiting for the answer to the question i presented to my pulmonologist about the Cedar Sinai study,and when i get her opinion back i will certainly spread the news right here on this remarkable site. Stay healthy, stay happy and safe. Chuck, over and out!!

[Charles]

Hi you all, Chuck here. As i had told you, i was to see my pulmonologist on June 30th. She was not that familiar with Zinc, so i gave her all of the information that i have read here on this site by ya’ll and what my GP had to say as well. She said that she will look into it and get back to me ASAP. You know, the usual runaround. :-} I see my GP tomorrow and will talk about it as well with her. As i have said, i am taking 50 mg of Zinc daily and do not see any change so far after 12 days. I to an interested why Phil Ryan’s Pulmonoloigist said not to take Zinc. I do have a magnet in my house and when i walk past it, it seems to start buzzing a little bit. Hmmmm!!!!
Chuck, over and out.

[Charles]

Hi Millie and the gang. First let me correct something. I said Friday the 30th in my past onslaught of words. I meant Thursday the 30th. That said, i started taking the 50 mg of zinc and it has been 5 days now. So far i don’t feel any different. Possibly a little more thirsty, but that is the only change that i have noticed. Again, it’s only been 5 days. However, i do not see any unusual growths anywhere either, so that’s a plus. I see my pulmonologest Thursday, so it will be interesting to see what she says. I also see my GP the following week for my normal check up and of course i will ask her about the zinc, as well as she is the one who said that there should not be any major side affects. As far as zinc/copper goes, i have not heard anything about that combination. Nenner, neener, neener it’s someone else’s turn to talk. Charles “Chuck” Gerson

[Charles]

Millie, you think that you are confused, read all of the above articles and you will find no two are alike. However, as Kitty has said, my GP doctor has also said that 11 mg is about correct for us men because of the possible side effects. So i not only questioned her, i also told her that most everyone on this site is taking 30/40 mg per day. So i asked her if the side effects are major or just something like an itch, calcium deposits or an ingrown toe nail. When she got back to me, she did say that there WERE NOT major problems. So she said to try the 30/40 mg and see if anything new starts growing on me. 🙂 So this morning i went to the local pharmacy and all they had was 50 mg. (I live in a very small town) So i bought them and took my first tablet this morning. The way i figure it was, that the worse thing that could happen is that i die. So what’s new!!! I am on my 9th year with this thing and have been taking OFEV for the last four years and now needing oxygen a lot more that a year ago. I am getting worse, but it is slower than the general articles say when i should croak. So that’s good, i think! Now this is what is so very interesting to me, is that i have heard nothing from any of you that your Pulmonologest has said about this subject, zinc. Me included. I do have an appointment with mine on Friday the 30 th of June and i intend to ask her all about ZINC. Report will follow. Oh no! i think that there is something new on my forehead. Oh wait. it’s just a fly. Good night. Charles “Chuck” Gerson

[Charles]

ZINC huh! Very interesting. Has anyone talked to a doctor about it? I, like Tim, will start immediately. Does anyone know how much is too much as far as dosage is concerned? Charles “Chuck”

[Charles]

Steve and George, i don’t have much longer to go, so i would try it today if had the chance. Nothing to lose! Not to mention that my ex wife always said that i was a rat, so it definitely fits me. So if either of you hear back from anyone, put a good word in for me.
Chuck Gerson

[Charles]

Hi Jackie, i did not even know that they had 200 mg for OFEV. I have been on 150 mg for about four years. I to get sleepy in the late afternoon. Sometimes i just fall asleep watching TV. But i am on my ninth year and lately the way i have been doing, i probably won’t make it to 2023. If your pulmonologest was Dr. Zisman, you are lucky that he moved. Fatigue and ambition is a real problem as well as living higher than 5 or 600 feet in altitude. Keep a good attitude and it will help. B T W, the average life of a female in the USA is 80. So you have already beaten the odds.
Charles Gerson, Cambria Ca.

[Charles]

WOW! I am glad that my doctor doesn’t say what all of you have said. So many variables. The one thing that i have noticed is that most of you have not had this illness for as long as i have. I was diagnosed in late October 2013. Up and until then i was a drinker of any and all types of alcohol. As time passed i could feel the difference of the hard stuff. So i pretty much quit it. I continued to drink red wine. That also started to affect me a little different, so i went to white wine. Lately i have reduced my drinking to a handful of beers a week, with an occasional glass of white wine when have some BBQ’d salmon or a glass of cab with a filet. All of these pretty much have the same result. I get tired and want to take a nap and makes all of my extremities very heavy with and my breathing also suffers. I am working on nine years and probably don’t have much longer. So, i am not trying to scare you however you might take it as a precaution. But what i am really trying to say is that drink and enjoy the hell out of it now, because you might not be able to do it as your IPF progresses. Just as a note, i know that it is not the real stuff, but i have been trying SAKI (a rice wine) and it seems that i am having no problem with it.

[Charles]

Hi all of you guys. My name is Chuck Gerson and i had been diagnosed with IPF in late October 2013. I have been on OFEV for about 4 years or so. Fortunately i have had a cast iron stomach most of my life, so i have had relatively no side effects. However, in the last 6 months or so i have gotten weaker, want to sleep more than i should and i can tell that my breathing is getting much more shallow. So i probably don’t have much longer. Like it has been mentioned that the average life span is 4 years, so i am way ahead of the game. The sad part of this whole mess is that the drug companies can’t make any money from us because there are so few of us that have this. If that was not the problem, you would think that the manufacturers of the available drugs would have sent out, every month or so, questionnaires asking us what we have done or where we have been or what we have eaten etc etc. in the last twenty years to all of us who are taking the drugs to see if there is any thing that matches. That way there might be a starting point to help figure out what the hell we have so they can maybe figure out a way to stop or prevent this unusual scaring. Chuck signing off.

[Charles]

Vandana, from what you have said and (i am not very familiar with all of your other ailments) from what i am reading, they are not going to cause you to die. IPF is. So i would concentrate on the iPF and it’s medications. I have been taking OFEV for about five years now and was diagnosed with IPF in late 2013. I am way over the average life span that they predict. Like you, i am not afraid of death either but when it is time i’d like to go ot with ease also. OFEV is made by Boehringer Ingelheim (BI) and they have a program that will pay for it if you qualify. Hope that this helps a little, Chuck from Cambria Ca.

[Charles]

Brenda, i am on OFEV and have been for 4/5 years. It is to meant to slow down the progression of the IPF. I would suggest that you start now if in fact you have IPF. Start slowing it down now. If you wait until it gets worse, you may be cheating yourself out of a few precious years. You are guessing that you will have and can’t handle the side effects. Try starting on a lower dose, maybe 100 mg. I find it hard to believe that your doctor said to wait. So for whatever, that’s my advice to you. I have had no side effects at all. You just never know.
Charles Gerson

[Charles]

Hi Richard, i started out on 100 mg and soon after went to 150 mg because i had no side effects. So my only suggestion would be that you should try the 150 again and see if the side effects are severe enough that you can’t handle them and need to go back to the 100.
I am on my ninth year using the 150’s and of course it’s hard to guess if it is because of my higher dosage.
Good luck, Charles Gerson