Mayo Clinic Connect
What is known?
Liked by bt56
has anyone ever checked ur magnesium?
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My son gets electric shocks to face and body. Hands and joints swell and very painful. Starting to get some brain fog has major gastrointestinal problems with no know cause. Many other thins that are unexplained also. He can not do much at all anymore. Doctors think he just wants drugs which isn’t true . He is really suffering . He doesn’t drink or anything . We are in process of looking for doctor that will listen and not tell him is is depressed. Seeing the article about long turn effects has help him feel that maybe some help is out there somewhere. After the last doctor wouldn’t listen he has refused to go anywhere. After reading article he is again will to search for some help. If anyone knows of doc anywhere familial with post interferon syndrome please let me know. He is 51 and about ready to just give up… this has given him hope
Liked by beckyd
Just posted more. He doesn’t use computer because his hands swell to much but I do read post to him. He had treatment 15 years ago and had symptoms soon after that now have gotten much worse. VA put him on about 10 different meds and almost killed him . All for behavior and depression ( not Real problem ) . He finally wouldn’t go back. He has been to many docs and had many test but besides his back issues no on believes him. Now things are so much worse. He eats very little because of gastro issues and bloating. Any helpful info is appreciated before we look for new docs.
I really feel for him, I have constant stomach problems too, where one dr. Had to go in and get rid of the sludge, whatever that means.
My main complaints from 12 months of treatment hell are that I no longer wake up feeling good, even when I had hep c morning was always a good time for me.
Has your son ever had a bone density test to find out how the treatment affected his bones? If not, he needs to find out.
An eye exam should be done too.
It is unfortunate that I do not have a computer right now, it is so hard to type on this phone. I will be getting a computer in another month so it will be easier.
Also, there was a handbook that the va doctor’s were to follow during treatment. He should have had intermittent heart exams, bone density tests, eye exams, etc. throughout his treatment. Was he given these tests to protect him? This is how I found out how really negligent the doctor was who treated me, not once was I referred for any test of any kind while they were pocketing 100,000.00, that was just the amount they got for treating one person. They didn’t care about me, they only cared about the money.
HELLO EVERYONE…SORRY I HAVEN'T BEEN ON HERE FOR A WHILE BUT HAD SURGERY AGAIN ON MY CRUMBLING BONES FROM INTERFERON THERAPY. WE R GOING AFTER MERCK PHARMA…ANYONE WITH ME? I HAVE BEEN IN CONTACT WITH THEM JERKS.
I HAVE A PODCAST NOW N EVERYONE PLS GET ON IT N SHARE YOUR STORY OF INTERFERON THERAPY N WHAT IT HAS DONE TO U.
MY PODCAST IS: ANCHOR.FMURL/LISA-DESTELLA 3
Liked by chasguy
I received an email and remembered your name. Is this really happening?!
And didn’t we talk on the phone a long while back, having trouble with my memory.
I have contacted so many different agencies to get justice and I have been turned down.
It is so weird to hear from you because getting justice is always at the back of my mind.
I recently thought of getting a wheelchair and sitting outside with placards letting everyone know they are endangering their life by having Read as their doctor, and how she ruined my life.
I was told approximately six months ago that I have osteopenia and now they are telling me I need to have my left knee replaced. I am in so much pain every day, I can barely walk, and can’t even get a pain pill. My quality of life does not exist. This was the same knee that swelled up to twice it’s size from treatment.
Two years previous to treatment I had a bone density test and was told I had the bones of a twenty year old.
This is not from old age, I can prove it was from treatment. The anger I feel never goes away, especially after finding out that we were supposed to have a bone density test intermittently throughout those long grueling 12 months!
I can’t do it, I don’t have a computer.
My name is Barbara… I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes… the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.
I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!
I stopped posting on this site because it wasn’t helpful.
I am going to another doctor who I trust. I have been unable to get the bone density test results, they no longer exist. This would prove it was the medicine that fried my bones. I am going to try and locate the doctor. I think she might remember me for I was 49 and she was astounded by the results, and stated “I don’t know what you’ve been doing but you have the bones of a 20 year old.
My understanding is that if you end up with debilitating, crippling results of medication statute don’t apply. And you can still file a lawsuit. Does anyone know about this issue?
My bones r fried also, just had my second neck surgery n a third is close cuz the stee in the front l (5-steel fusion), second…2 months ago a triple laminectomy…had to remove 3 discs and ad steel rods n screws in back n now another. I have 3 cages lower back n 2-7 inch steel plates holding my left leg, so yes, it fried my bones n the pain is unbearable. My immune system is gone n just got off my 90th antibiotic in 5 yrs. I have a port in my chest where in get lifetime infusions. I have a podcast n am going after Merck…pls join me n tell ur story. Lisa
I thought a podcast was the same as a zoom app, my son informed me otherwise, and proceeded to say that he couldn’t believe I was still so stupid about electronics, LOL!
Anyway, you did a great job Lisa!
To get on the podcast I would have to write it.
I can’t just talk and make myself turn into a babbling idiot, which is what would happen.
I am currently fighting SHA, and that is taking what little energy I have.
But…. I will start today writing what I want to say, should not take too long.
I am really glad you did this!!!!
Liked by ldestella
Great job Lisa! Will start writing what I want to say today.
They have now convinced the hospitals to give interferon to people in the hospital suffering from covid. I was hoping we could warn the public of this somehow.
Hi Sue, r u freaking kidding me? unbelievable. I am getting so much worse…my thyroid blew, new heart probs. I cant let this go as it has done so much damage n r lives matter too! Pls share your story and everyone else! They're not getting away with this!! Thx
Yes lol I called u a couple of times!
Hello all. Haven't posted for a while, so I'm overdue. With respect to "victim", I don't think it's appropriate to try and push this on one individual or entity to do something. Most of us have long term issues, including pain, malaise, etc. Who has the time and eneryg to push this forward? "Victim" are you willing? Mayo is providing us a forum, but you think they should do more? I'm not sure I'd trust Mayo to be in the forefront as they are to interlinked with the painfully expensive prescription companies to make it objective. I think most people suffering from post-interferon syndrome would jump on the bandwagon, but we simply don't have the energy to be in the forefront. To each and every one of my fellow sufferers, I wish you the very best. It's a bitch. I've been dealing with it for about 10 years now. I feel like a quarter of the man I used to be and I'm sure many of you can relate. I do take some solace in that I'm still alive and I hope everyone else does as well. Cheers. Maybe we'll meet up in the next life.
Hello, I just started a podcast at ANCHOR.FM/LISA-DESTELLA3 please tell ur story, I've been in contact with Merck n it's not going to be pretty. We need to stick together
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