Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

@deb1959

I recently posted on another forum but had no responses except for 1 person that told me I might try here instead.
I also had interpheron-ribavirin treatment for hep c and stage 4 cirrhosis 10 yrs ago. Happy to say the horrendous 48 week self injection treatment worked, and I did also as advised by my gastroenterologist, did not touch a drop of alcohol for 8yrs. Had all the horrible side effects as the majority of us did as well, and the brain fog, memory and droppsies stuck around for a long time. Thought I was on my way to a fairly normal life after those 8 yrs....was in great shape physically and mentally.....enter Covid and then the vaccine. 5 days after the Phizer vaccine I was hit like a ton of bricks with headaches, body aches, brain fog, dizziness, shortness of breath, blurry vision, back aches and fatigue so bad I could barely get up and go to work. I thought I had Covid so I went for a test and it was negative...so that's great, I've just got the flu then....but it never went away...for over 3 months. My family dr sent me in May for every blood test, back x-rays, ultrasounds on my abdomen and everything was perfect...I was healthy as a horse she said, except I had a high white blood count in my urine. She said I had a bladder infection. I told her I have no symptoms of that and reminded her of all the other symptoms I do have. There is something really wrong with me. I feel horrible everyday!
My husband asked me one day, when I was having a meltdown, what does it feel like, what is your worse symptom!
I said all of it..it feels like I'm on treatment again. Bam...I wondered if that's what it is? When on my last visit to my dr, I asked if it could have something to do with my treatment of interpheron-ribivirin 10 yrs ago....it is an antiviral treatment, Covid is a virus and they still to this day do not know the reprocussions or long term effects of the Interpheron-ribivirin concoction on a human being. She had no idea but said it very well could be possible and after speaking to 3 pharmacists, they all had the same answer. It definitely could be from the vaccine and your prior treatment. Your body thinks it's being attacked again and the antiviral could be still kicking around...they didn't know... As they have never had any reports on any trials or outcomes or side effects from the Interpheron-ribivirin and the vaccine. So here I am, just hoping someone else out there knows what I am going through and they have had the same type of problems post vaccine. I sometimes do think I am crazy and I do cry a lot because others have no idea how devastating this has been. I am not getting the second shot until I have some type of answers. I don't go out in public much anyway, just to get groceries etc, and always wearing a mask in public. I am self employed as a bookkeeper so can work from home for the most part and am from a small town in Ontario Canada. So if you have had similar side effects or know of someone else, please get in touch with me. It would be good to know I am not alone. Thanks! Stay well.

Jump to this post

I understand your pain and I’m sending you good vibes for what that’s worth! You are not alone there were so many of us. I came on here looking for answers on how the Covid vaccine might affect my post interferon syndrome. I don’t even remember the exact date anymore, ( 12 to 15 years ago) I did two ribavirin interferon treatment rounds back to back. A total of a year and a half on treatment because The hepatitis came back quickly and I was in stage four liver disease.I had a wonderful happy life with a partner and a job before the treatment. I am now alone, on disability and rarely leave the house. I have constant horrible pain especially in my hands and feet. Also joint and back pain. Sometimes it hurts just when somebody touches my body. Severe depression and anxiety, weakness, fatigue and no desire to do anything except sleep. When I wake up I’m already thinking about how long it is until I can go back to sleep. Hair loss, rashes and I’m probably forgetting stuff because my memory is shot. I want to get the vaccine but I am terrified of making symptoms worse or adding new ones. Please let me know if you find out any other information. Your story is exactly what I’m afraid of.

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@squiggylynn

I'm so sorry to hear that you have tested positive again. I pray this does not happen again. I don't think my husband could handle the treatments anymore.

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Sorry I replied to the wrong person so I deleted it

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@deb1959

I recently posted on another forum but had no responses except for 1 person that told me I might try here instead.
I also had interpheron-ribavirin treatment for hep c and stage 4 cirrhosis 10 yrs ago. Happy to say the horrendous 48 week self injection treatment worked, and I did also as advised by my gastroenterologist, did not touch a drop of alcohol for 8yrs. Had all the horrible side effects as the majority of us did as well, and the brain fog, memory and droppsies stuck around for a long time. Thought I was on my way to a fairly normal life after those 8 yrs....was in great shape physically and mentally.....enter Covid and then the vaccine. 5 days after the Phizer vaccine I was hit like a ton of bricks with headaches, body aches, brain fog, dizziness, shortness of breath, blurry vision, back aches and fatigue so bad I could barely get up and go to work. I thought I had Covid so I went for a test and it was negative...so that's great, I've just got the flu then....but it never went away...for over 3 months. My family dr sent me in May for every blood test, back x-rays, ultrasounds on my abdomen and everything was perfect...I was healthy as a horse she said, except I had a high white blood count in my urine. She said I had a bladder infection. I told her I have no symptoms of that and reminded her of all the other symptoms I do have. There is something really wrong with me. I feel horrible everyday!
My husband asked me one day, when I was having a meltdown, what does it feel like, what is your worse symptom!
I said all of it..it feels like I'm on treatment again. Bam...I wondered if that's what it is? When on my last visit to my dr, I asked if it could have something to do with my treatment of interpheron-ribivirin 10 yrs ago....it is an antiviral treatment, Covid is a virus and they still to this day do not know the reprocussions or long term effects of the Interpheron-ribivirin concoction on a human being. She had no idea but said it very well could be possible and after speaking to 3 pharmacists, they all had the same answer. It definitely could be from the vaccine and your prior treatment. Your body thinks it's being attacked again and the antiviral could be still kicking around...they didn't know... As they have never had any reports on any trials or outcomes or side effects from the Interpheron-ribivirin and the vaccine. So here I am, just hoping someone else out there knows what I am going through and they have had the same type of problems post vaccine. I sometimes do think I am crazy and I do cry a lot because others have no idea how devastating this has been. I am not getting the second shot until I have some type of answers. I don't go out in public much anyway, just to get groceries etc, and always wearing a mask in public. I am self employed as a bookkeeper so can work from home for the most part and am from a small town in Ontario Canada. So if you have had similar side effects or know of someone else, please get in touch with me. It would be good to know I am not alone. Thanks! Stay well.

Jump to this post

I did forget to include some of my issues from the treatment that I am concerned may worsen. Swelling of feet and hands,very severe sweating, insomnia which doesn’t happen often but when it does I usually go three nights without sleep-which is pure hell. Vision problems including cataract surgery at age 49. And the dropsies, which I didn’t even relate to this until I read your story.

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So terribly sorry to hear all of your ongoing side effects. I'm here for you because I certainly know how you feel. I thought I was over all of those side effects until I got my first shot, they were all back. Everyone isn't the same and not everyone should get the vaccine. Especially when we have already had an antiviral injected into our bodies and they have no idea of the side effects of the Interpheron-ribavirin and the vaccine combined will do to people. I for one am not getting the second shot, basically on the advice of pharmacists. They actually know more than drs do about the types of drugs and interactions. Seems funny that all of a sudden Phizer is totally safe and recommended by the FDA but no one has put out any answers or literature on the people who have had Hep-C treatment of Interpheron-Ribavirin 10-15 yrs ago that still to this day have side effects and what this vaccine might do to them. If the vaccine is so good, why are people who have had 2 doses (of which is supposed to protect them) so afraid of the people who haven't gotten both shots. I am the one who is in danger possibly, not them. Some people just can't have the shot, it's as plain as that. Until someone comes out with a report on interactions between the Hep-C treatment of interpheron-ribavirin and the Covid vaccines I can't or won't decide. You need to do what's right for you also. I don't want you going through what you have still happening to you body and mind, but worse, like on treatment. My thoughts and prayers will be with you.

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I'm writing for the first time on this site. I'm beginning to wonder if my husband may be suffering from post-interferon/ribavirin dementia? He was diagnosed with dementia at age 57. He is now on disability and I'm caring for him.

He completed a course of interferon/ribavirin in approximately 2004 for hepatitis C. He was on that treatment for 6-9 months. He had all the side effects of the treatment like depression, brain fog, flu-like symptoms, etc. After he got off the treatment most things seemed to fade, but I noticed things had changed in his demeanor. He was often more depressed and irritable that he had been before. At the time of his treatment he was a financial manager for a car dealership. After treatment he really struggled with his job. In 2007/2008 he had 9 different jobs. He saw the doctor and had a head CT and nothing was out of the ordinary (no masses/lesions). We finally got him in to see a neurologist in approximately 2012? who did the mini-mental exam in the office. My husband didn't do well at all on the test, but the doctor (who was awful) didn't give any reason for my husband's cognition issues. He suggested a follow-up in a year. We finally found a different neurologist a couple of years later and he was seen again and this neurologist suggested a neuropsychologic exam. It took several months to get him in to be seen. He finally had that exam in early 2017. It was a very detailed report, but in the end he was found to have a neurocognitive disorder. My husband had to quit trying for jobs in the car business and just drove for Uber after that. In 2019 he had a followup neuropsych exam. At that time there was severe decline and was found to have dementia. He received SSDI after that.

There has never been any reason given for this. No family history. I've looked for reasons to explain this for years, when I ran across an article about post-interferon/ribavirin treatment syndrome. Is this a possibility with my husband? It's seems very likely to me..

REPLY

I'm sorry to hear what you are going through. Anything is possible with post interferon syndrome. So many weird things happen mentally that have no explanition. Keep doing your research

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@lisaz

I understand your pain and I’m sending you good vibes for what that’s worth! You are not alone there were so many of us. I came on here looking for answers on how the Covid vaccine might affect my post interferon syndrome. I don’t even remember the exact date anymore, ( 12 to 15 years ago) I did two ribavirin interferon treatment rounds back to back. A total of a year and a half on treatment because The hepatitis came back quickly and I was in stage four liver disease.I had a wonderful happy life with a partner and a job before the treatment. I am now alone, on disability and rarely leave the house. I have constant horrible pain especially in my hands and feet. Also joint and back pain. Sometimes it hurts just when somebody touches my body. Severe depression and anxiety, weakness, fatigue and no desire to do anything except sleep. When I wake up I’m already thinking about how long it is until I can go back to sleep. Hair loss, rashes and I’m probably forgetting stuff because my memory is shot. I want to get the vaccine but I am terrified of making symptoms worse or adding new ones. Please let me know if you find out any other information. Your story is exactly what I’m afraid of.

Jump to this post

The interpheron caused my compromised immune system and I wanted to get vaccinated as quick as possible. I had my first vaccine shot in January. Second shot in Febuary and just got my booster shot under Doctors recommendation. So far I am doing fine with the vaccines. Hope this helps

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SISTERS AND BROTHERS of severe Post Interferon Syndrome
THERE IS HOPE! I AM PROOF.

48 weeks of Interferon/Ribavirin treatment torpedoed my life. I spent 12 years post-Interferon treatment with debilitating spine, joint & muscle pain, fatigue, brain fog, zero memory, vision problems, migraines, nausea, lesions from head to toe, abdominal pain, increasingly unable to walk and eventually bed-bound. I had cataract surgery from long term use of high dose steroids and I was addicted to Fentanyl (an opioid 50x stronger than heroin.)

FINALLY, in 2018 I discovered FUNCTIONAL MEDICINE. [Learn more here: IFM dot org]
After a very thorough medical history, thorough review of 12 years' of conventional medical specialists' labs, tests, images, and reports, my Functional Medicine Doctor ordered new labs, including bloodwork and nutritional status, and did a whole-body assessment.

My FM doctor identified the underlying 'root' causes:
1.) Post-Interferon Syndrome
2) Nutritional deficiencies
3) Zoster Sine Herpete (ZSH) - Shingles without Rash; both of which had gone undiagnosed for 12 years. [The ZSH was due to my immuno-compromised post-interferon body.] Google it. Very painful.

I then received Functional Medicine treatments which revived me within 4 months:
1) IV Nutrition,
2) Ten-Pass IV Ozone Treatments 2-3x/week for 14 weeks,
3) Nutritional Supplements,
4) One Embryonic Mesenchymal Stem Cell injection,
5) One Exosome injection.
6) I ate a strict 'whole food plant based' diet, and
7) Juice fresh vegetables daily.
I also used a Far Infrared Sauna daily to detox through sweat and increase blood flow.
The Zoster was treated with the common anti-viral Acyclovir.

NOTES:
1) This was all very expensive (about $45,000) and not covered by insurance, but I re-gained brain and body functions, and essentially got my life back. Worth every last cent.
2) I still have some residual pains and difficult mornings, but still gradually improving and I'm completely grateful for Functional Medicine.

HOW TO LEARN MORE - AND FIND A FUNCTIONAL MEDICINE DOCTOR:
Go to: IFM dot org and click on "Find a Practitioner". If you cannot afford this, please consider starting a fundraising campaign at go fund me dot com. If I were back in that position, I would sell everything I own, if I had to, in order to receive these treatments and overcome the constant pain and suffering that I know you are enduring now. I urge you to at least go talk to a Functional Medicine Doctor. Many will see you for the first visit without charge.

Ps - Don't believe the 'pseudoscience' claims about Functional Medicine. They attack because they are protecting their lucrative interests in Big Pharma and they don't understand how our cells and body systems work together to heal - when given exactly what they need to do their healing job. In my experience with Post Interferon Syndrome, what my body needed was:
1.) Detox,
2) Nutrients,
3) Oxygen (Ozone), and
4) Help from stem cells (which become whatever type cells the body needs).

Your healing needs may be different. All bodies, genes, and illness progression are different. But that's what Functional Medicine does at its core - find the root cause and treat everyone as a unique, complex web of inter-dependent biological systems. I post this in the spirit of giving you an option. It worked for me.

I pray for your recovery.
Lisa

REPLY
@fitsister

SISTERS AND BROTHERS of severe Post Interferon Syndrome
THERE IS HOPE! I AM PROOF.

48 weeks of Interferon/Ribavirin treatment torpedoed my life. I spent 12 years post-Interferon treatment with debilitating spine, joint & muscle pain, fatigue, brain fog, zero memory, vision problems, migraines, nausea, lesions from head to toe, abdominal pain, increasingly unable to walk and eventually bed-bound. I had cataract surgery from long term use of high dose steroids and I was addicted to Fentanyl (an opioid 50x stronger than heroin.)

FINALLY, in 2018 I discovered FUNCTIONAL MEDICINE. [Learn more here: IFM dot org]
After a very thorough medical history, thorough review of 12 years' of conventional medical specialists' labs, tests, images, and reports, my Functional Medicine Doctor ordered new labs, including bloodwork and nutritional status, and did a whole-body assessment.

My FM doctor identified the underlying 'root' causes:
1.) Post-Interferon Syndrome
2) Nutritional deficiencies
3) Zoster Sine Herpete (ZSH) - Shingles without Rash; both of which had gone undiagnosed for 12 years. [The ZSH was due to my immuno-compromised post-interferon body.] Google it. Very painful.

I then received Functional Medicine treatments which revived me within 4 months:
1) IV Nutrition,
2) Ten-Pass IV Ozone Treatments 2-3x/week for 14 weeks,
3) Nutritional Supplements,
4) One Embryonic Mesenchymal Stem Cell injection,
5) One Exosome injection.
6) I ate a strict 'whole food plant based' diet, and
7) Juice fresh vegetables daily.
I also used a Far Infrared Sauna daily to detox through sweat and increase blood flow.
The Zoster was treated with the common anti-viral Acyclovir.

NOTES:
1) This was all very expensive (about $45,000) and not covered by insurance, but I re-gained brain and body functions, and essentially got my life back. Worth every last cent.
2) I still have some residual pains and difficult mornings, but still gradually improving and I'm completely grateful for Functional Medicine.

HOW TO LEARN MORE - AND FIND A FUNCTIONAL MEDICINE DOCTOR:
Go to: IFM dot org and click on "Find a Practitioner". If you cannot afford this, please consider starting a fundraising campaign at go fund me dot com. If I were back in that position, I would sell everything I own, if I had to, in order to receive these treatments and overcome the constant pain and suffering that I know you are enduring now. I urge you to at least go talk to a Functional Medicine Doctor. Many will see you for the first visit without charge.

Ps - Don't believe the 'pseudoscience' claims about Functional Medicine. They attack because they are protecting their lucrative interests in Big Pharma and they don't understand how our cells and body systems work together to heal - when given exactly what they need to do their healing job. In my experience with Post Interferon Syndrome, what my body needed was:
1.) Detox,
2) Nutrients,
3) Oxygen (Ozone), and
4) Help from stem cells (which become whatever type cells the body needs).

Your healing needs may be different. All bodies, genes, and illness progression are different. But that's what Functional Medicine does at its core - find the root cause and treat everyone as a unique, complex web of inter-dependent biological systems. I post this in the spirit of giving you an option. It worked for me.

I pray for your recovery.
Lisa

Jump to this post

Hi Fitsister, your message is a welcome glimmer of hope for people with post interferon syndrome. I noticed that you wished to post a URL to a resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

The Institute for Functional Medicine https://www.ifm.org/

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@colleenyoung

Hi Fitsister, your message is a welcome glimmer of hope for people with post interferon syndrome. I noticed that you wished to post a URL to a resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

The Institute for Functional Medicine https://www.ifm.org/

Jump to this post

Colleen, I am enormously grateful for your support of my message. Thank you.

REPLY
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