Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: BillyBob on January 28, 2018, 08:27:26 am
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Hi everyone,
On my last week of Harvoni. Get blood work done this coming Wednesday.
I am overly anxious about the results. Been an emotional roller coaster ride.
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Iv'e been reading about how retroviruses live in a give and take relationship with the host. The virus is like a bacteria that takes control of various basic signaling functions of our body.
Getting rid of this virus can cause a strain on our system because these functions basically have to relearn to communicate without the virus.
Sorry to get so deep. Just hoping to open up some discussion about how the symptoms we have may be related to the virus symbiosis with us.
That nasty little virus like to hide in the liver. The liver stores sugar in the form of glycogen, used to regulate blood sugar levels. The virus relies on this energy source to live. So, even when our circulating blood sugar is low the virus has plenty of sugar to feast on while camping out in our liver.
This fact made a lot of sense to me when I got my blood tested for the virus while on a hard core fast, the result showed undetected! I was going three days on water only then I would eat for a day, then repeat.
Well, I had lost 40 pounds and was basically starving myself because I was overweight and feeling really terrible.
That virus was hiding in my liver giving a false "undetected" test result.
After having my blood tested again (on a normal diet) my viral load had exploded to four million. Wow!
But while it was hiding out I had good energy, felt better than ever. Once I started eating normal the fatigue came raging back, along with the virus load.
The reason I'm writing all this is because this virus has a agenda. It's not just a senseless organism. It does things to benefit its existence while at the same time making sure it doesn't go hog wild and kill its host.
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Welcome, BillyBob. You're in good company as far as the emotional roller coaster ride. Did you have any labs during treatment, even just a liver panel? If your ALT and AST have gotten lower, that's a very good omen. You probably know that your odds of being undetected now are extremely good.
There are probably a lot of us here who would like to be able to read those same web pages or articles that you've been reading -- could you please post links or titles? I had assumed the issue was that my immune system had gone crazy trying to outwit the ever-changing HCV and then was even more confused by the sudden arrival of a very powerful ally (the Harvoni). But the idea that signaling functions are involved and need to be retrained is intriguing.
Looking forward to congratulating you soon.
Gnatty
P.S. I see that you were adding to your post while I was typing my reply. A false "undetected" due to prolonged fasting -- very interesting! What an eloquent last paragraph you wrote!
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Hi BillyBob,
I'm with Gnatty, I'd love to read the articles you've been reading! I've had some body changes since my treatment ended, and maybe these articles could shed light on some of that.
As an FYI, some of my changes are:
-Platelets up from low 300s to latest at 407 (150-400). They were climbing during treatment.
-Lots of anxiety, sometimes extreme. Have had to ratchet caffeine way down, should probably go full decaf.
-Some shortness of breath and elevated heart rate. Think it's related to the anxiety, as I've been to the doc and all checks out.
-Insomnia
-Dizziness after eating. Always had a tendency to fainting, and the dizziness after eating has happened sporadically over my adult lifetime, but now it has become common.
I feel like my body is very confused. I'm trusting that it can find its balance by and by.
Congrats on your upcoming end of treatment! Keep us posted on your labs!
Cheers,
Ella
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I had hep c for likely 37 years and was diagnosed with cirrhosis 10 years ago.
Treated 3 times with interferon based treatments (6 months each time), once for 12 weeks with Sovaldi and Olysio and finally cured after 24 weeks Harvoni along with ribavirin for 15 weeks.
Except for interferon and ribavirin I felt basically always fine maybe tired sometimes but that is about it. Now that I have been cured for 3 years I basically feel no different.
My platelets have risen from the 80 to 90 range to about 110 (normal range 150 to 400) low platelets being a symptom of my long standing cirrhosis so any improvement is good news. I still have liver cirrhosis not expecting that to change because I have had cirrhosis for so long while still having continuing liver damage from hep c but will see what the future years bring.
Best to all
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gnatcatcher,
Thank you for your comments. No, I haven't had any blood work other than right before the start of treatment. Most everything was normal range. My fibro markers indicated a high level 2. One year before my fibro level was 0-1.
The doctor said I was the healthiest of her patients. Funny, I told her I didn't feel too healthy.
She is my new hep doc. The hep doctor before her said I was too healthy for treatment. So, he refused to submit to the insurance what I needed to get treatment. I was so mad that I never went back for little over a year. Once I noticed online that insurance companies were allowing more people treatment I tried again.
The reading material that really got my wheels turning is a book called "Virolution" by Frank Ryan.
Then with reading all I can about retroviruses in general. I like to take key words out of his book and join key medical words concerning hep c and search on google for information.
For example: https://www.ncbi.nlm.nih.gov/pubmed/26818264
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705306/
I read a post from a patient that said her doctor told her that hep c caused mitochondria disease. Well, the mitochondria is the power house of our cell function. It gives them (us) energy. Well, a large percentage of us complain about fatigue. Coincidence? A large percentage of us on treatment seem to have an increase in appetite, and gain weight. Could that be a response from the virus trying to get more energy as it senses it's demise? Some how using our mitochondria for resources?
Just food for thought. I'm confident more studies will be done in the future to shed light on how retroviruses affect human physiology.
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Thanks, BillyBob -- I've put in a hold request to get the book through interlibrary loan, and after skimming the abstracts, I've tabbed the studies to read later. BTW, HCV is technically a flavivirus rather than a retrovirus:
http://virusabc.weebly.com/retroviridae-and-flaviviridae.html
but whatever they call it, it's a nasty mutating scourge. And it is implicated in all sorts of other diseases under the term extrahepatic manifestations (EHMs) of HCV.
Glad you were able to get your meds before your fibro level went up even further.
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Ella,
I'm not sure what could be causing your symptoms but I think your doctor may be correct in assuming it to be related to your anxiety.
But I have read many articles stating that the virus does cause trouble with mental cognition. I will find a link to that and post later. I am posting from my phone right now and it's too small to comfortably do that.
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Lynn K,
Yeah I don't understand why some people have symptoms and some don't. I'm thinking it's related to genetics.
I'm glad to hear that you or basically symptom-free.
you must have good genetics my friend.
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Ella,
I thought you might find this article interesting.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4840160/
I know that I have severe mental stress. I used to attribute it to my work. But after investigating it further I believe it is because of hep c.
I bet your anxiety is made worse because of hep c.
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Hi billybob
Yeah just fortunate that way I guess
It does seem most, but sadly not all, are able to tolerate treatment reasonably well. But that is little solace for those less fortunate.
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Thanks BillyBob,
I'm checking out those links now!
~Ella
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Hi Ella (and BillyBob),
Anxiety means different things to different people, I guess.
It can be oriented primarily physically - or psychologically - or both.
I had Hep C for forty years.
The symptoms were patchy at first - but I was full-blown symptomatic for the last twenty years or so.
(I treated 18 months ago).
I had chronic anxiety for all of those years of unwellness.
All of that viral clagginess ... that constant blurriness and distortion - it necessarily brings on anxiety because safety in the world is constantly under threat if you're not functioning properly.
All of that - or a lot of it - accords with the excellent material BillyBob posted above (Thank you!).
If it's bad enough to cause breathlessness, though - I'd keep an eye on it.
I had some breathlessness during Tx (Harvoni) but, it quite quickly backed off following Tx.
The anxiety has also backed off, as my health has improved.
Dizziness after eating:
When I became unwell - I noticed that I would get that sort of dizziness soon after finishing a meal that included meat.
I was increasingly unable to tolerate meat (and gluten), and changed my diet so that it majored on olive oil and small amounts of fish.
That seemed to help keep my symptoms under control.
My diet is slowly changing again as I heal from the Hep C, and that dizziness doesn't really seem to happen anymore.
So ...
Don't know if any of that helps - but you know - keep an eye on that breathlessness!
Are you able to consciously relax?
Anyway - hoping that you are doing OK today.
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Thanks, Andrew.
The shortness of breath has dissipated. But don't worry, I have good doctors and a first class hospital three miles away. :)
I had anxiety before treatment, but it really ramped up after completing treatment, which seemed weird to me, because I have reason to believe the worst is behind me. I feel much better physically being off Epclusa by a long shot. I had terrible side effects on medication.
I am feeling better now in any event. I scaled way back on my caffeine intake, and that has helped. I am normally sensitive to drugs (including caffeine) and foods, but I was drinking lots of coffee before treatment because of my constant HCV fatigue. Maybe my body just doesn't need or want it now. It's also possible I just got sick, as my office has been a parade of sick people this winter.
Or, I don't know, maybe this was all just me adjusting to a new body state. One thing I know about my anxious mind -- it gets nervous when faced with new things. And things feel very different now. I just got David Burns' workbook When Panic Attacks, and I hope that will help.
In many ways I feel much better. My body doesn't hurt like it used to, though my pain was cyclical, so we'll see if it comes back. Although, it feels much better now than the times I felt good before treatment. Sometimes I lie in bed before sleep or before getting up in the morning, and I marvel at how good my body feels. It seems like a miracle. Also, I developed Raynaud's a couple of years ago, but I have not had an attack this winter (I got off treatment Thanksgiving Day). And my body feels buzzy often in an altogether not unpleasant way. :)
Thank you so much for your concern and for sharing your experience. It helps so much to connect with people here, as no one in my real life knows about my illness.
~Ella
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Andrew,
I'm pleased to find that you found useful information in that article. One of the main reasons I joined this forum was for us to share our knowledge on this hideous virus.
Gnatty,
Thank you for clarifying the difference between a retrovirus and a flavivirus.
That will definitely set me on the right track.
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Hi BillyBob,
Yes - it highlights the profound effect(s) of - esp. a long term infection.
... And even though I knew that - it's still upsetting to see it laid out in black and white.
I mean - it's great to be cured.
I'm still grateful every day for this blessing ... that that hideous (as you say) virus is gone, and I'm free of that nightmare.
... But I''ve lost a lot along the way - and I'm all-too aware of those losses as my [now aging] body tries to recover!
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Seen the hep doc yesterday. Got blood drawn. Will update soon as I find out results.
One more pill left. Trying to stay positive. So nice to see that one pill in the bottom of the container. 12 weeks! I don't know how anyone could do the 24 week deal. Definitely couldn't do the old interferon treatment.
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BB,
Sorry you had a rough ride. Yeah, imagining what the interferon folks went through puts things into perspective.
I'm rooting for ya.
gn
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Yup 3 rounds of interferon at 6 months each time, one 12 week treatment with sovaldio and Olysio (relapse) and 24 weeks harvoni with 15 weeks of ribavirin.
Interferon was difficult. Sovaldi and Olysio was for me pretty easy. Harvoni was ik but the ribavirin made it a tougher time.
I’m guess I’m really fortunate to not have a hard time in general with medications. But interferon was not an easy treatment without a doubt.
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I got my results back. It came back as undetected! I am pleased to say the least.
Now for the three month wait to see if it's a permanent fix.
I'm going to start pumping iron again. I had to quit lifting soon after starting treatment. For some reason I just could not heal and would end up completely wiped out and unable to function properly.
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BillyBob, you just made my day!