April 6, 2020 at 10:25 am #23842
With the advent of this horrific virus and the attacks on the pulmonary functions. The multitude of testing and investigative research around the world it would only lend to possible cures for PF. Let’s hope there is some good that comes out of something so bad, for both, stricken with these two horrible diseases.
- This topic was modified 1 year, 3 months ago by joe hick.
April 6, 2020 at 6:21 pm #23853Mark KoziolParticipant
Hello Joe, thank you for commenting. I agree with you wholeheartedly. Best wishes, mark.
April 7, 2020 at 9:41 am #23855
Very good point, Joe. Now, how do we get the word out to the world of science that is studying cures or vaccines against the coronavirus and the lung diseases the virus causes, to keep in mind possible cures for PF.
April 7, 2020 at 11:36 am #23861
I think this forum is a good start by getting the word out. It will tend to have an osmosis effect in the pulmonary research field. We all need to advocate for a cure for this disease.
April 7, 2020 at 4:27 pm #23863Catherine LeonardParticipant
I thought the same thing, as Covid-19 creates a ‘ground glass’ lung appearance typical of IPF. Perhaps some day… there will be an actual cure. One can hope, it’s just too bad the research is amped up for this horrible pandemic.
In the meantime we stay sheltered in place.
January 8, 2021 at 12:38 am #26805RonParticipant
Just a quick note to point out that the “ground-glass” effect is not a primary indicator of IPF. You are probably thinking about the “honeycomb” effect.
It can get confusing because while a ground-glass appearance sometimes shows on CTScans of IPF patients, it also appears with several other conditions. Also, when healthcare people listen to IPF lungs with a stethoscope it is often described as sounding like “shattered glass”.
I guess that’s why doctors use those fancy Latin words for everything.
- This reply was modified 6 months, 3 weeks ago by Charlene Marshall. Reason: tagging
April 7, 2020 at 4:59 pm #23865
Hello Joe, Rene and Catherine:
I agree wholeheartedly with all of you, just like @mark-koziol , hoping desperately that this pandemic forces some new pulmonary research that is promising for IPF. I also wish it didn’t have to happen and am quite worried about seeing the effects on the healthy lungs of those who have “recovered”. As you mentioned @catherine , they’re already seeing some lasting effects. Sadly, I bet we see the incidence of PF diagnosis climb after this, which is so sad. However, I can’t help but wonder if this will drive some new, informative research. We will see. It is time to get people to listen about how serious pulmonary diseases are!
Keep advocating all and do stay well.
April 7, 2020 at 8:01 pm #23871
Yes Joe you are right, we hope something good will come out of this horrible covid-19 , hope its sooner than latter, fingers crossed so researchers take a look at the “ground glass” shape Cat scans ,best wishes for all of you folks
- This reply was modified 1 year, 3 months ago by Charlene Marshall. Reason: tagging
April 9, 2020 at 12:33 pm #23889
Let’s hope, your right. Unfortunately it has to be at the expense of others. The only thing I am worried about are those who will suffer now from fibrosis due to covid -19.
April 10, 2020 at 12:20 pm #23906
Me too Joe! Unfortunately, I think we’re going to see the incidence of PF develop/increase significantly once this pandemic is over. I worry about what it’ll do to people and how it will shift the research paradigm for us living with IPF/PF now. Hopefully for the better, though I certainly wish it wasn’t because more people ended up with the virus and thus IPF/PF. Difficult times for everyone. Take care, Charlene.
April 10, 2020 at 1:17 pm #23916Andrew Hall DCParticipant
I would like to let everyone know about what is happening with laser therapy for the Covid 19. Earlier in the week I was contacted by Dr Barabas from St Thomas hospital in London. (same hospital where Prime Minister Boris Johnson is being treated). He asked if I would be willing to join a working group of international doctors that are/will be using laser for the virus due to our work with IPF/lung disease patients. I told him that not only am I willing but am honored to be asked to join the group of experts in laser therapy. I was the only American invited to join the group. In the first meeting of doctors they asked me about our protocol. It was decided that they would use the protocol that Dr McGinnis and I developed with some modification of part of it regarding our chronic portion and change it to acute for the virus patients. They have already started treating patients in Italy and Malaysia and the UK will be starting shortly. I am anxiously awaiting to hear how the virus patients respond to laser. All the doctors in the working group feel that this is a very promising treatment as research has shown that laser will stop the replication of viruses including Covid viruses and the well known reduction of inflammation and edema. It’s the lung edema that is killing the patients. We also may find that the virus patients may prevent any other problems like PF that we have concerns about.
Laser therapy is considered ‘alternative care’ in North America, but it is and has been ‘mainstream’ in the UK and Europe for decades. They are not so tied to Big Pharma there as we are in the US. St Thomas hospital has 2 K-lasers and nearly all hospitals in Europe have lasers. I know of only 2 hospitals in the entire US that have lasers.
I am anxious to hear of the outcomes assessments from the doctors treating the Covid 19 patients and will update after our future working group meetings.
April 10, 2020 at 3:50 pm #23942
May 2, 2020 at 12:40 pm #24224
Hi Charlene, I was wondering if there has been a reaction in the PF News Forum on the article that appeared in PF News about the research into the effect of green tea extract ECGC. Considering the positive findings in this admittedly very small and inconclusive sample, would it not make sense for all of us IPF patients to try it? The only possible negative I see is the potential weight loss which may not be desirable for some of us. I placed an order for the Teavigo extract, which was mentioned as the producer of the extract, and the sales lady told me that several IPF patients had ordered the extract since publication of the study. And that leads to the question: of those of us that are using this extract, what are your findings? What dosage are you using? Have you consulted with a pulmonologist and if so what was his/her recommendation? Any side effects? How long did you use or will you be using the extract? Thank you.
May 2, 2020 at 6:50 pm #24226
Hi Rene, As soon as I read the article , went to superstore and got myself 2 packs of 20 bags each of GREEN TEA I m on it now since 3 days, feel better, I quit coffee all together though,
my phlegm an cough went down 30%, so will try for 10 days. best regards
- This reply was modified 1 year, 3 months ago by Charlene Marshall. Reason: tagging
May 3, 2020 at 2:33 pm #24232
So nice to hear from you on the forums again 🙂
I know you emailed to let me know you saw the thread about the EGCG extract, but if you need it for quick reference, it can be found here too :https://pulmonaryfibrosisnews.com/forums/forums/topic/egcg-green-tea-extract/
Like you and many other readers, I was surprised about the positive results of this study despite the small sample size. I am looking at options of ordering the extract as well, and would like to get it directly from the cited manufacturer here, Teavigo. Did you order it right from their website?
I wish there was a way to compile the effects of this for those willing to try it. The nice thing about trying it, is there aren’t any potentially dangerous side effects or permanent damage that would arise as a result as it is just the green tea extract. None that I can foresee anyways, though as always my disclaimer: I am not an MD. Let me know if you notice a difference when it arrives! All really good questions to those using it, hopefully folks in the EGCG forum see the questions and can reply if they’ve tried it already.
Take good care!
May 5, 2020 at 9:26 am #24243Karen MartinParticipant
I know some people who contract COVID-19 are put on ventilators. I have CPFE and have been told by my pulmonologist that a bronch or biopsy (of nodules) would be too risky for me as the tissue is fragile from damage already present. Does that mean I would be in danger from being intubated as well? Should I mention this to my daughters in case something should happen to me? I too am hoping for a silver lining to this disease and finding new ways to help those with IPF/PF would be phenomenal. I hate that the US is so tied to big pharma rather than searching for new approaches. Perhaps this will be the nudge it takes. Stay well, all. Karen
May 5, 2020 at 10:15 am #24249Mark KoziolParticipant
Hello Karen, I think the only persons qualified to answer this question would be a physician. Being placed on a ventilator is a risky procedure in that some patients may never recover enough in order to be removed from the ventilator. I also agree with you and hoping for a silver lining to this dilemma. A cure found serendipitously would be great. Take care, Mark.
May 5, 2020 at 10:45 am #24250Rebecca Schrantz-LillyParticipant
I have the same beliefs! Thru all the testing to find out what this virus does, they may find a cure for PF. I believe there is going to be good coming out of this virus. I really do believe that
May 7, 2020 at 9:43 am #24277Jerry GenesioParticipant
Hi Rene: For those of us with a heart condition, I forwarded the NEJM article re EGCG to my cardiologist and asked him if the 5% natural caffeine content in Nature’s Wellness Green Tea Extract 500 mg would be a problem and he advised me to try it ans let him know immediately if I have any reactions. I recognize that there are myriad types of heart problems so everyone should consult with their own cardiologist, but mine gave me a green light so you shouldn’t pass on this because of the caffeine content before you ask.
- This reply was modified 1 year, 2 months ago by Charlene Marshall. Reason: tagging
May 7, 2020 at 2:33 pm #24284
Hola Jaime, hi Jerry, thank you for your reply and findings. Jaime, I don’t know if just having green tea is the same as taking the extract. It could be that the extract is a much higher concentration of EGCG than the tea. Jerry, good to know about the caffeine.
May 10, 2020 at 1:38 pm #24310
Hola Rene , you have a very good point there, EGCG extract would be much better , In my case I take about a liter a day of China green tea, three times. Thats lots of water too which is good for us may be not enough EGCG then. How you take the extract, its a more concentrate tea ?..Anyways I ll be alert to the comments, thanks for your reply, we ll be in touch for sure, best regarda
May 12, 2020 at 10:22 am #24317Richard J ShankParticipant
Looks like I’m a day late and a dollar short to comment but I will anyway.
Like everyone else, I agree. This CV is attacking lungs and causing scarring. With all the research surrounding this, we just might get some useful treatment from it. Or, at a minimum, we might get more attention to the IPF problem by the researchers.
For me, I have had great success with Chinese herbal medicine (Wei Labs). It is not a cure and can’t fix my lungs. However, it seems to keep my lungs soft and my symptoms in check. I’m also not getting worse anymore. Well, not fast enough that I’m noticing it anymore. Hopefully I can hang in there long enough for them to find a better treatment or a cure but I’m not holding my breath. That was a joke. I have a morbid sense of humor.
Best wishes to all
May 12, 2020 at 3:39 pm #24327Jerry GenesioParticipant
I’m with you, Joe, as well as everyone else: let’s all hope some good comes out of the suffering this pandemic has caused around the globe. I might add some small measure of hope by noting that our pulmonologists are in this pandemic up to their face shields and if anyone is apt to recognize a helpful secret waiting to be discovered they will. I know my pulmonologist has been working with COVID-19 ventilator patients in the ICU at our local medical center and IPF is her special interest as noted in her professional bio.
Wishing all a happy spring and lots of fresh air!
May 13, 2020 at 9:35 pm #24346
Best wishes to you too @rjshank ! Thanks for writing and I am so glad to hear you’re finding some success with Wei Labs. I know others have written here that they find them beneficial as well, glad to hear it is helping manage your symptoms. Here’s hoping for some helpful research to emerge for all of us!!! I can’t help but hope that will happen too!! Take good care.
January 12, 2021 at 3:16 pm #26842Ben RobinsonParticipant
Cheers let’s hope something good like new treatments for our forgotten lung disease now come from this virus studies. I would like to know about lung regeneration myself as I have autoimmune PF and am healing in my 6th year. Started reversing at year 4.5. Take those CT reports with a grain of salt. Even Johns Hopkins doctors can’t half read the scans. Believe me. PF in the outer connective tissue looks like a big white blob shrinking your lung like the 60s movie LoL. Inside the lung it gets hazier with increased opacity as the PF grows if you have it there Best compared to previous scans so that it can be discerned from prior lung damage to see if it is growing. PFT and other supporting test changes should also be included in the analysis. Be wary of flawed CT report analysis which is very common. Many doctors refuse to read the imaging doctor report but I found them to be often more accurate than the dam doctors and wish I would have given them more stock. From my experiences 6 year vet of the doctor wars who would be stone dead if I hadn’t questioned them and studied on my own.
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