Jerry Genesio

I didn’t know gabaoentin suppressed the cough associated with IPF.  I was diagnosed with IPF about a year ago and have never had a serious cough, dry or otherwise but I’ve been taking 600 mg of gabapentin t.i.d for at least 7 or 8 years and that could explain why. Thanks, Jerry

Charlene – Unexplained weight loss was one of the symptoms I have had due to the IPF and since I’ve been taking 500 mg of EGCG daily I’ve noticed a very slight increase in the rate of weight loss. Whether it’s attributable to the EGCG or not I don’t know but when I finish this bottle of EGCG I don’t plan to replace it and will monitor my weight…[Read more]

Charlene – Is your physician friend writing about IPF? If so, I’d be interested in knowing if he has spoken with any who have found IPF runs in their family. My mother was diagnosed with exactly the same symptoms I have and I know there are pulmonologists who believe IPF is hereditary. Actually, the genetic angle might generate some very…[Read more]

I just researched Theraworx side effects and probably won’t use it because I’m on blood thinners and it has several rare but real blood-related adverse effects that can be severe if they’re experienced. More common possible side effects include Diarrhea, Nausea, Stomach Cramps, and Vomiting. Listed under common side effects also is cinchona,…[Read more]

Thanks, Charlene! I might consider writing about my own PF experience at some point, perhaps using a character to hi-lite symptoms like shortness of breath, fatigue, etc. Kristan Higgins’ book sounds very interesting. Let us know when it’s available.

Those who like thrillers might enjoy reading “Lamb’s Blood”. I wrote it seven years ago and the paperback, at $10.95, has done very well on Amazon.com. If you search for my name on Amazon.com, you’ll pull up other books I’ve written as well. “Lamb’s Blood” got a great review in the Maine Sunday Telegram:

Maine Sunday Telegram (July 21, 2013)…[Read more]

Dave – I hope your weight remains steady. Weight loss is my greatest concern. I, too, have been on EGCG for about a week with no weight loss so far and no other adverse reactions either. Thanks for posting your progress. I’ll be interested in what you have to report a month from now..

That’s good news Ed Brownstein! My only concern has been weight loss. I started on 500 mg EGCG QD about a week ago and hope I can keep or increase mt weight. Thanks for posting your results.

Charlene: My mother had IPF and RLS, I have both as well, and my younger brother has RLS and probably has IPF also. I agree with those who suspect they are both genetic and hereditary. I’ve been taking Ropinirole 0.5 mg QD for several years and it has helped a lot. Ropinirole<span style=”color: #222222; font-family: Roboto, arial, sans-serif;”>,…[Read more]

I’m sorry to hear about the fever and malaise that you’ve had, Charlene. I’ve not had any of the ailments you mention and hope you’ve shaken them by now.

Stay well!

Received word back from my pulmonologist today saying she thought the EGCG article in the NEJM, though brief and involving a small number of patients, shows promise. She said she could think of no reason why I shouldn’t start taking EGCG. I’m starting today and will watch and listen very carefully to how my body responds. If I notice any changes,…[Read more]

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…[Read more]

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…[Read more]

Michael: Thanks for mentioning your cardiologist’s concern about the caffeine. I also have a cardiac condition and am in A-Fib most of the time so your comment has prompted me to discuss the EGCG with my cardiologist before I start taking it. The one I’ve ordered is Nature’s Wellness Green Tea Extract 500 mg which has 5% natural caffeine.

I am so…[Read more]

Penny – Thank you so much! Your response is very helpful. I’ve ordered a 4 month trial supply of 500 mg capsules and will take one-a-day. Please, let’s continue to exchange information and results. My biggest concern is weight loss. I’m already experiencing a slight, unexplained weight loss probably attributable to the IPF. I’m down from 198 to…[Read more]

Joe, have you been taking EGCG and, if so, what has your experience been: weight gain or weight loss?

<span style=”color: #303030; font-family: ‘open sans’; font-size: 13px;”>IPF patients prescribed Symbicort must be especially careful and particularly aware of social distancing if they absolutely must leave the safety of their homes. I read the Symbicort side effects online very carefully and learned the following are listed among “common” sid…[Read more]