virapress

did anybody see a post ref. virapress . i know i saw it , i just can't remember where .

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There were two. I reported them to Inspire. When Courtney tried to find them to check them out, they had vanished. My opinion is that this was an attempt by someone to sell "snake oil" to our most vulnerable - the newly diagnosed, and terrified. Obviously, that person knew that and chose to "get out of Dodge" before anything negative could go their way - and they deleted their own posts and split. Sorry. But there just is NO cure for IPF or PF at this point in time. PERIOD.

Katrina

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when i found the post i began researching . found a lot of 'sketchy info .' no matter how much you want to believe , i urge everyone ,please do your home work. when you think you know it all , keep digging . don't fall into a money pit you can't climb out of . easy breathing everyone .

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i seemed to have poked a hornets nest. are there patient records from the folks who have benefited from your product ? i'm just sayin' ......... you are not the first to put forth bovine extract as a healing /restorative product . thanks for your response .
sharon martin

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Gee. wow. Big surprise. I reported another post, and less than an hour later, it too has vanished!!

Folks, PLEASE be wary of these snake oil salesmen. Whatever you do, keep your wallet tightly closed. Like raish has said, do some homework.

Healthy larry & Healthy Cindy sem to be sheisters. Why else would a post be deleted so quickly?

I am bothered that our tight little group has been invaded. Again, I believe that they are aiming their posts to our most newly diagnosed - those who are terrified and likely uneducated about PF.

Please be very cautious of anyone who claims to have found the magical cure for our disease, there isnt one, Closest thing so far is transplant. Period. And that doesnt always work either, although the odds are improving.

:-) Katrina

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katrina , robert left message . i did not realize the difference in a post to the public and one to the group . will be more careful , knowing with some of questions , i may have issued the invite . i.e. - enzymes , clayitagain post . easy breathing .

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My posts are shared with the public too. I think it is sad that we have to censor ourselves due to rotten people with bad intentions. I wouldnt lump too much guilt on yourself. I just try to lookout for the others, especially the most newly diagnosed. Many of those folks havent learned much about PF yet, and their heads are still spinning from the shock of diagnosis. That is the perfect time for these crooks to strike - when the new patients still think that if they search hard enough or long enough, or throw enough money away, that somehow, someway, they will find a magical cure. A cure that sadly does NOT exist!

What we can do is report these questionable posts to inspire, and hope they will eventually give up and go away. I wont even reply to their posts - I dont want to encourage them. Trust me, they will have an answer for every question you pose to them. lies upon more lies. They just want your money. Money from a sick person is just as green, and usually easier to get, than money from a healthy person.

There are some treatments that can give slight improvement, for a little while. Prednisone for example, reduces inflammation. Some of the asthma meds can open airways a little and allow slightly freer breathing. But none of these are a cure. Lets not forget about the placebo effect either. Many of us weill improve on a sugar pill if we believe strongly enough that we will. Helps for a little while, but eventually the PF is going to win. Period.

Sorry to be the bearer of bad news. And allow me to express my gratitude for every single one of the patients willing and able to participate in studies so that maybe, sooner rather than later, we will indeed have a drug that will cure PF!

:-) Katrina

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may good days and may we all be here for the cure. thanks, katrina , i was feelin' kinda dumb .

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Raish,

No dont feel that way, we are here to support you and each other. I will tell you this group is really helping me cope with my very difficult set of circumstances. Posting to members only is a more effective way to communicate and you will get higher participation from all.

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Huh...I wondered what happened to the Clayitagain post. I'm not aware of the difference of posting to the group...my replies have always just been locked on share with public. ~Deb

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Carlsbad,

If your the originator of a discussion you control the post, if not then you post to what the originator set up.

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Raish ? Did I miss something? I saw you mention bovine extract. I am taking it as part of my daily meds. What happened?
Beeja

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the maker of virapress . president and ceo no less responed to comments, i believe by katrina and me . he sounded really po'd . the post ' i seem to have poked a hornets ' was a reply to 'healthylarry 's response. you say bovine extract is part of you daily maintenance ? please share what , why , who said etc . i no that bovine extract has been used for years for everything from body building to 'hardy - har ' antiaging . do you feel this product has helped ? how? easy breathing .
both katrina and i reported the post "clayitagain " to pff for investigation . i felt that the post was there as a sales tool . i don't believe inspire is the place for marketing . i believe the treasure exists , but i am always mindful of the 'fake ' treasure maps sold at the gift shop .

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