Posts Tagged ‘Interferon Treatment’

Post Interferon Syndrome – Headaches and Celexa (Citalopram)

Posted: March 4, 2012 in Uncategorized
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So I made the move back to civilization from the mountain house, and I’m loving the new apartment and the new job. More than anything, all the fear wrapped up into not being able to perform at the new job is beginning to dissipate as the Post Interferon Syndrome headaches have been so diminished with the new meds. After Interferon I was so shocked to have that brain fog penetrate through and destroy my quality of life for many years after I stopped Interferon. I mean it sucks even worse because the doctors won’t admit it’s happening, blame it on other things, and tell you such idiotic things as, “Just take a multivitamin” or when you tell them about your symptoms kind of look down their nose at you and state “Well, if you say so.” I mean it’s quite remarkable really, how online you can find multiple people suffering from an almost universal diagnosis, and then go to three educated doctors in a metropolis like Atlanta, and have your General Doctor, your Gastroenterologist and your Neurologist, all basically say Interferon has no lasting side effects, so this must be an anomaly or just in your head, or even that you’re being a hypochondriac to the point you almost question it yourself. But I wrote about it, I journalled and I was even able to stop working for a while, move out of the city and see if it was allergies, pollution or something I hadn’t thought of, and the headaches persisted. I was still, 3.5 years later suffering from brain fog type headaches at least 66% of the time, which made selling, or making cold calls very tough if not impossible. So in 2012, facing a new job, a highly micro managed job, I was really scared I wouldn’t be able to perform because of the headaches. Two or three weeks into it, I was still suffering 2-3 days during the week, so almost out of hope, I decided to take a scientific practical objective look at what meds might possibly do for me. This is despite my being a member of Alcoholics Anonymous and opposed to being on any mood altering substances. I had tried anti depressant while I was beginning Interferon and I had been so early in sobriety, I felt like it made me more squirrely and even so uncomfortable that it made me think of drinking more often, and trust me at one year sobriety, I wasn’t in a position to be flirting with that possibility. Especially as I was just starting my battle against Hep C, the disease which attacks the very organ my liver uses to process alcohol. So my attempt at mood altering substances, or anti depressants had gone so bad I just was afraid they would make me want to drink again, but at 5 years sober, the headaches practically making me an invalid, I finally decided, hell or high water, I would give several different substances, 90 days or so, give them a fair shake and see how much better or worse I felt, just so longed as I didn’t drink or drug, it was worth the experiment. I’m glad I did.

It’s mind boggling how well Celexa works in combating my constant headaches. I mean it just doesn’t make sense it’s so effective. The first week or two was weird as I was adjusting but after I got over the hump, I mean to tell you the brain fog headaches I would rate as an 8 or so, fell down to around a 2, and the frequency of around 66% of the time or 2/3rds of the time walking around trying to function in pain has been reduced to around 1/10th of the time. They also gave me Prodrin to combat the migraines, the other kind of headache that actually significantly went away when I quit smoking 2 years ago, and it’s basically caffeine and a ton of Tylenol, but that too does the trick on that particular kind of headache. I am just so grateful I held out and waited, and found something that finally worked. I will give this another 90 days or so, or maybe even after that explore other ones to see which one I function the most highly on, but this is like a minor miracle to me, because I was suffering for so long, in so much frustration and pain, and I thought it would never end. I still don’t understand it. Could it be I was so depressed, or so chemically imbalanced it actually caused physical pain to my brain. I mean that looks like the case but seems far fetched and unlikely, however, I am not a chemist, a doctor or even educated about such things. All I know is it killed my headaches, made my life functional again and I am grateful.

I was written too by someone recently stated they had to go back on oxys because of their post interferon pain, and let me tell you man, I can relate. I was an opiate addict for a long time, and I write about that part of my life significantly in my book Hippopotamus Sea, however, I am not going back to that shit, ever again. Not saying I haven’t been tempted over the last 3.5 years though, I thought about it at least once a week for sure. It just isn’t an option for me anymore, I’d sooner eat a bullet. Just like any drug, I need more and more, for less and less effect, and it’s what caused all this bullshit to begin with. I’m not ever going back to that, and if you’re suffering I beg of you to quit the opiates and try Celexa, for some reason it really helped me with my post interferon symptoms. Opiates and drinking, relapse in general is not a viable option, period the end. Other than catastrophic surgery and taking the meds with sponsor supervision, we with the disease of addiction can not flirt with pain meds or drugs effectively, and even with the Celexa, I was in constant contact with my sponsor and letting him know exactly what I was trying, and he was aware of every decision I was making. Accountability is key in sobriety, and no matter the pain, there is no excuse to going back to opiates, drinking or any kind of narcotic. With us to use or drink is to die.

That being said, I do still feel a bit anxious from time to time on Celexa which makes me want to try Lexapro because I hear that it has an anti anxiety portion, and now my mind is much more open about the capabilities of these meds, whereas before I thought it was a block to your higher power, and the sunlight of the spirit, now I’m glad my headaches are gone regardless. Actually the Doctor had suggested Lexapro, but they didn’t have it in generic, and therefore the insurance company changed my prescription, or rather made me call and get the Doctor to change the prescription, which in itself is news worthy. Who the fuck gives the insurance company of none doctors the ability and power to change my medications, solely based on cost. I mean, it’s really an outrage. They say Lexapro will have a generic within the year though, so I’ll just continue on Celexa, record the symptoms, and then compare once I switch over later on.

I am still glad I found a baseline before using them, but I mean, Post Interferon, meetings and step work just wasn’t killing the headaches like it killed the urge to drink early on for me. Everything happens for a reason I suppose.

– Jared Bryan Smith

Gregg Allman – Hepatitis C – Latest CNN Interview

Posted: July 14, 2011 in Uncategorized
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I’m too lazy to go look but I wonder if his albums sell under the huge multimedia Time Warner banner?

He STILL denies having gotten the drug through any kind of drug use, and even adds, “It doesn’t much matter how you got it, you got it.” And this is true, but MUCH more people get Hepatitis C now a days via needles and or sharing straws, which never occured to me while I was out there drinking and drugging, than do by using dirty tattoo needles. Ironically, I just returned from Macon GA and for some reason I believe the bucket story now. That probably is exactly how he got it, and ohhh how disgusting.

It is still humble and cool of him to come out and speak about Hep C, and that he’d gotten a liver transplant of a 29 year old liver, and even more shocking I thought, was that the CNN announcer mentions that he still has Hep C, and that he is living with it. So he was not cured of the virus at all? I wonder if they will try and run him through the new Telaprevir with the higher success rates. I hope so, I hope they can clear him of the virus as they did me, but as Dr. Hutchinson from Duke told me “the young do better than the old.” I wonder what his prognosis is for Interferon with the new drugs, and if the liver transplant makes it impossible to go under Interferon or somehow prevents the full blown chemo like side affects? Still, I may have been a little harsh when I blogged about Gregg before, denying any drug use and stating that he’d gotten it from dirty tattoo needles. In the big scheme of things, it doesn’t really matter how you get it, none of us invented the disease, it matters what you do with it, and if you man up and fight it, quit drinking, and persevere through all the long odds to beat the nasty little beat me down.

Still, I’d be happier if he’d use his name to go out and promote free Interferon use with Telaprevir to all, I mean, they shortened the length of time, doubling the odds, but also doubling the cost. Most of us don’t have Rock Star retirement plans. And it’s the kind of thing that with a concentrated government effort, they could eradicate just like polio, instead of just bilking people left and right.

Let me tell you too, if I find out he’s working for Roche or Merck and this was a publicity stunt for some new medication they are charging triple for, and he still couldn’t admit he’d gotten it using needles, then I’ll be just as irritated. Or to find out his rock star royalty got him the transplant liver faster, that would be just as aggravating. On this one it is probably better I don’t do any research. For now, Gregg has my compassion and sympathy and even my thanks for doing this interview, regardless of if it’s connected to his record sales, and/or paid pharma giants, more than likely even if all that was true, his agent just tugged his heart strings and Gregg was just doing what he thought was right.

He’s still one of the baddest musicians ever to walk the planet. I pray his recovery from Hep C and his transplant stays strong and that he’s able to go through the new Interferon treatments with telaprevir and beats it.

-Jared Bryan Smith

A minor operation is one that is done on someone else – Dr. Richard Selzer (Hep C, Interferon, Pegasys Side Effects Reported to Roche Genentech)

Posted: January 25, 2011 in Uncategorized
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So in the interest of conspiracies and full disclosure, I did just formally complain to Roche Diagnostics, or a division of Roche called Genentech via an 1-800 number and case number *ahem 1462, because I was led to do this by an underground advocate of Hep C and Interferon treatments who are still suffering serious side effects from his Hep C treatment, Interferon and Pegasys, just as I am. So if I disappear mysteriously, let the bread crumbs start here! haha… He also forwarded me the side effects document that I posted on the left side of my blog here under Hep C Side Effects, and I’m grateful this guy is doing something, because 3 years out I am still suffering major headaches, daily and wake up every morning with a crushing pain in my skull, and I have to take 4 advil every single morning. At three years out I’m concerned that this is never going to go away, and in fact has been getting worse as of late.

The more concerning factor is that I’m now not alone, but have been hooked up with a group of at least 20 or so who are all experiencing these major side effects from Interferon treatment. It sucks, and mine, headaches, seem to be on the light side of the symptoms. There are people on this underground list with MS, fibromylgia, chronic joint and skin problems, and more. We’ve read doctors quotes talking about how it seems like anyone who uses Interferon is worse off than when they started. And yet I personally am obviously torn as to how to protest or be letigious, simply because I am cured of the disease of Hepatitis C, which now kills more people than HIV in the United States. So, I’m cured, but I suffer chronic pain. I wasn’t in dire need of Interferon treatment, I could have waited 20 years, but of course as Dr. Hutchinson told me, the young do better than the old, so I guess it does make sense to take the meds sooner rather than later. Especially in my case when you had the tougher version of the disease, which takes 12 months of Interferon and Ribavirin treatment, not just 6 months, and which of course is only cured 50% of the time, compared to some of the less aggressive strains of the virus which are closer to 70%. But had I known about these side effects and the advent of Telepravir which is supposedly right around the corner and lightens the load of the interferon and ribavirin one has to take, I may have waited.

I am very grateful to be free and clear of the virus of Hep C though, and what’s more, Roche actually paid for my entire one year prescription, which would have been 3k x 12, or 36k I sure as hell did not have. Still… my motivation is drained constantly. Fatigue is always with me, no matter how much I work out or don’t work out, and my memory, both short and long term are definitely affected. The irony is that the brain fog I have is so closely associated to a hangover I may as well have kept drinking. I often wonder if I did some cocaine or amphetamines like I used to (which is of course why I got Hep C in the first place) if it would reconnect all those neural synapses or whatever the hell. Who knows. I know a girl who went back out and used Adderall for a while, and she seemed sharp for a little while, but as fate would have it, she just last week got another DUI so there goes that one million and fifty fifth excuse to relapse, drink and take drugs… foiled again! haha….

Anyway, so yeah, I reported my side effects to Roche, though  I doubt anything will ever come of it, and to be honest, I am grateful the virus is gone. I mean I feel better than when I was on Interferon for sure, but what I wouldn’t give to feel sober, healthy and as lively as I was prior to the treatment. I mean it really was night and day, and I wish there had been an easier method of getting rid of the virus.

I wish someone would do an actual scientific study on Ozone, and Anthony Kiedis and Steven Tyler would both come clean about how and why they both choose to treat it differently.

I wish the tests would show that something was different with me, but all my tests come back saying I’m perfectly healthy, and yet hear I am, every single day, brain fog, tired, waking up with a headache and taking more than 8 advil a day. One day science will have something to definitely indicate the differences in patients pre and post interferon but apparently for now, the benefits, or being cured of Hep C, most certainly outweigh the consequences, or dying of hep c, and of course, not having any measurable side effects. Who can blame dr’s for thinking it doesn’t cause differences if here I am feeling like shit all the time, but completely incapable of proving it to anyone.

Oh the quote, haha, that refers to the Hep C, Liver Biopsy or sword inserted into your side, no fun at all, and though considered minor, very majorly painful. Read my book Hippopotamus Sea: My Viral Sobriety to hear my entire Hep C, Interferon, recovery journey through alcoholism, drug addiction, and of course Hepatitis C, and I give it away 100% free on http://www.books4free.com , it aint no scam, just a site that allows you to read my life story for free, and it’s also available for sale on Amazon and Smashwords for very cheap in hard back, and digital on smashwords.

-JB Smith

books4free.com 10 year birthing pains

Posted: August 10, 2009 in Uncategorized
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Wow, so this is my first bloggage activity, and I’ve yet to see how this process works, so for all I know I’m writing in the subject line right now. It’s been a long day, I’m an executive recruiter by day and a writer by night, but also trying to finish the editing, and ultimately the publishing of my book through the website and publishing company books4free.com . Hippopotamus Sea is the name of the book, and it’s about the journey of my life. From being born into an abusive alcoholic, albeit, upper middle class, family in the late 1970’s, watched my Dad’s progressive disease as he spiraled downward from drinking Budweiser on a daily basis, to pina colodas, to chugging vodka straight from the bottle, and ultimately on August 22, 1989, putting a .357 to his head and blowing his head off.

I led an intense and crazy adolescent life, flirting with LSD, pot, cocaine, and of course my love, drinking, followed the Dead a little, sold drugs, went in and out of Juvenile Detention in downtown Atlanta where Judge Hatchett would scold me and let me go from time to time, until dropping out of school and dealing drugs, a gun was put to my head, both literally and figuratively. My girlfriend got pregnant, and then while she was 8 months pregnant a gun was put to my head to rob me of the cash I’d brought to a drug deal.

Longer story than can be blogged, eventually bought books4free.com in an early attempt to publish ebooks in 1999, that he’d written about Big Brother and the other wild conspiracy theories he’d floated about in his fragile little mind. I met in the rooms of AA and our stories were so similar we decided to work together.

Bertelsmann offered 20k in 2000 but I declined. Instead, got married, then divorced, and my addictions got worse and worse until I was doing my dying mothers fetinol patches. Once she died, I switched to heroin in one fateful evening, that would ultimately give me Hep C and cause my liver to start failing. I quit the heroin and all opiates after that night, but I continued to drink and things got worse and worse.

I lost my mind. I thought I had a microchip in my ankle, I thought I was an undercover CIA operative, and I was certain I was in hell when alcohol quit working for me in August of 2006.

I went to AA, I believed I was in hell, and my soul would ignite at any moment. I wrote a detailed book about the entire experience, my entire life leading up to that crossroads, and the journey of beating Hep C afterwards, and staying sober, etc.

With 2.5 years of real sobriety now, I’m trying launching the book, putting the final editing touches on the book Hippopotumus Sea and I believe I’m getting close, though the international slowdown in the economy is certainly not helping my progress any.

Oh well, such is life, as Miley says with all her years of wisdom, there is always going to be another hill to climb, always gonna be an uphill battle. Haha, I’m delirious. Day 3 without a cigarette, but it’s all good, I’m sure this too shall pass.

The dynamics of books4free.com will be this:

An unpublished author like myself will be able to post his/her entire book online for free, available to read, but not for download or print, but if they like it, and want to buy the hardcopy they’ll be able to purchase it through the site as well, or purchase the MP3 audio, or of course the ebook, which thanks to Sony, no longer is a monopoly through the kindle. The site, books4free.com, will offer authors the most money back of any self publishing avenue out there, and with the domain as obvious as it is, we will hopefully attract many readers, so that the cream will rise, and the books that aren’t amazing, will fall by the way side. That way when it becomes evident we have a successful writer on our hands, we will be able to act as a literary agent to the traditional brick and mortar publishing houses, and sign our authors up. We will charge less that lulu, iuniverse, or authorhouse, because we’re in it for the authors, not the vanity publishing revenue dollars.

We truly just want great works to be read, without the wall of traditional publishers from blocking them. Emily Dickinson died with 1000’s of pages of works in her attic. This is a place for writers to publish, and be discovered, without being charged an arm and a leg for cover design work, additional editing, consulting, etc. Vanity publishing sells to just that , the egos and vanity of writers, which I assure you can be quite large, but books4free.com and booksforfree.com will be for finished product, to be posted, and viewable for the public to read and judge on their own.

God willing, it won’t take another 10 years to launch anyway. Sometimes when I make plans, God laughs!

– JB Smith