My post-treatment malaise is back :(

[KimInTheForest]

I am SO disappointed. The post treatment malaise that had me so badly debilitated (sometimes bed-ridden) for several months last Fall after completing Harvoni/ribavirin in July has returned.

I have become very run down in past 3 weeks due to serious family problems. I have been falling apart health wise in recent weeks, having great difficulty sleeping or eating. I have been working to correct all that and had assumed the worst that might come of it is a sore throat or a cold or something. That’s what has happened in the past if I get too stressed.

But instead, I am now re-experiencing every mysterious symptom of the undiagnosable malaise that plagued me for so long post-treatment. It is as though it is a body memory thing, and THAT is where my body is now going when under extreme stress.

Exhaustion, fever (38.8 C/101.8 F), sweats whenever I fall asleep, profound feelings of anemia, unable to draw enough oxygenated breath because of anemia so lots of huffing and puffing, return of the ribavirin dry cough, endless need to drink water, dry mouth, swollen lymph nodes, dry chapped lips developing into splits and sores… All of this is what slayed me for months following treatment. But I had gotten beyond it and just released my new book, Undetectable. I was on top of the world, and then authorities came and removed my elderly mother from her home.

In last few days I have made really good progress on sleeping, eating and calming myself. And I just had blood work (CBC & iron) done today so will likely know results tomorrow.

The reason I am sharing this here is because I want everyone to know that, even though the miracle pill is now here and we can be cured in 12 weeks (for which I am forever thankful), the actual process of becoming healed can be far more complex and nuanced and prolonged for some of us – perhaps for all of us, even though some don’t experience post-treatment problems. I mean, we have co-existed with Hep C for decades. Our livers and every other system in our bodies have figured out a system for compensating for the presence of virus. That is a lot of little adjustments that need to be rejigged once virus is gone.

That which does not kill me, eh!

kim

[Forest dweller]

So sorry to hear about your state...but I think you're right about the adjustment period.
Have you thought about "medical marijuana??" Here in some provinces in Csnada you can get a license.  I am thinking of trying it for any symptoms during treatment  that I can't handle.
Anyone have experience with marijuana during treatment?? Eating it???

[beto]

Kim,

Sorry to hear.  I have not had to endure anything like you have experienced, but I will say; off and on I have strange manifestations.  Like I will suddenly experience joint pain, which is not something I have had a lot of issues with except back when the virus was bad.  I have not had acne since middle school but suddenly a little breakout.  I will at times get a chill for no reason. Mood swings and neurological issues pop up and pain in the ankles.  Some folks are having extreme issues and some mild or not at all. This discussion keeps going. 

Chronic infection can sometimes be an issue that causes fatigue and fever.  Dead (or dying) teeth and old root canals can be a source of chronic infection so, might want to have that looked into.  I am sure you and your doc are getting lots of blood work done.  Looking into inflammatory and hyper-immune issues, thyroid etc., and all.   

Another thread has been discussing some interesting ideas about this strange post tx syndrome.  One idea has been that the virus effected our biology to sustain the host for its own longevity.  Crazy notion I know.  However, pathogens and parasites do have needs and certainly make demands of the environment (us/host).  Imagine needing energy to replicate by the trillions.  Some have suggested that the virus might have a protective/shielding effect on the host. 

All wild speculation, but intriguing ideas.  The easiest to understand are what a lot of us have been saying all along;  the immune system is on hyper-drive and the bodies affected organs are taking their sweet time to heal.  Our emotion too are healing, yes.  healing crisis?  A tenat of homeopathy states that healing works backwards through the symptoms...answers will come forward as this begins to be studied. 

I so hope you start to feel better again.  perhaps you will find the problem where you least expect it.  Hang in there.

[FutureThinker]

KimInTheForest, I am so unhappy to read this post!! What did you and the doctor decide to do for your insomnia?  You had asked for suggestions on that several weeks ago; you mention you're sleeping better now so what did you two come up with to help?  You are also obviously going thru an extremely stressful period w/ your mother (also very sorry to hear about that), so I wonder what role major stress factors play in this post-treatment period? I hope your labs help shed light on this episode in your recovery. Prayers are with you for a speedy end to this phase. Please keep us posted, FT

[Else]

Hi Kim,

I'm sorry you're feeling poorly.  The physical stress of insomnia combined with the external stress of your mom's situation would lay anybody out.  And in a perfect world, this was supposed to be rest and healing time for you - not continuing extreme stress.     

I wonder about that temperature, though.  It makes me wonder if you're not fighting a flu bug of some sort.  You certainly weren't in a position to fight one off, if exposed.  I'm glad you had bloodwork done and that you're sleeping better for now.  I hope your schedule allows for some serious rest.

Post-treatment problems can be confusing.  And alarming, especially if they mimic symptoms of pre-tx HCV.  And hell, even those pre-tx symptoms were confusing.  Especially after 20 years of "you should get treated!!!" from the medical community, followed by an abrupt "what's your hurry, lady?  You're not that sick." 

Beto - I get those transient chills too.  And they're not something that can be tuned out or minimized as a symptom of anxiety.  The physical sensation is too strong to be something "in my head".  One thing is for sure - I didn't expect this. 

[KimInTheForest]

Thanks all for your wishes and suggestions. The fever is not related to flu. I wish it were that simple. This is part of the profile of the post-treatment malaise that laid me out for months and then resolved (only to return). I had a fever like that for a very long time (many weeks), and was drenched in sweat whenever I would wake. I didn't develop flu then, and I don't feel any touch of flu now. It is a very strange feeling to be burning up with fever without also feeling 'sick' in the normal way we associate with fever. That isn't to say there isn't some unidentified chronic infection. But we did look the first time and found nothing.

My labs are back and I'm all screwed up:

White Blood Cells: 3.5 (4.0-10.0 = ref range)
Red Blood Cells: 3.48 (3.5-5.0)
Hemoglobin: 105 (115-155) 
   (I had fought so hard to get my hgb back up after the ribavirin, now this)
Hematocrit: 0.32 (0.35-0.45)
RDW: 15.9 (11.5-14.5)
Platelets: 100 (150-400)
Neutrophils (differential): 0.9 (2.0-7.5)

Everything else was within normal range.

Pathologists comments include: "Pancytopenia is noted. Consider cytotoxic therapy, hypersplenism, or bone marrow disorder. Few tear drop RBC's also noted."

The one piece of good news is that my iron is finally starting to climb - presumably from the stronger iron supplement I began taking 18 days ago. My serum ferritin had been stuck at 20 (ref range = 5-247) for 7 months no matter what I did. Now it is up to 86.

As for the sleeping pill... I am wondering if this is a factor in my hemoglobin crash. I was prescribed Zopiclone. I had to stop after 4 nights because my body could tell it was being plunged back into the ribavirin-like anemia but felt worse than it had at any point on the ribavirin. Then I googled Zopiclone and anemia, and found a small percentage of female users who showed a correlation between Zopiclone & anemia. Maybe Zopiclone destroys hemoglobin?

Still... That does not explain the fever and all this other stuff, which is identical to the multi-month malaise that plagued me post-tx. So something is going on in my body. Will make a doctor's appointment. I am worried about the ribavirin having done some permanent damage to my bone marrow...

kim

[coastal girl]

Hello Kim
I am sorry you are so down.  I also was not feeling well, not as poorly as you but fatigue and muscle weakness and some neurological problems.  My blood test are improving with each test yet my body didn't feel like it was healing, kept thinking my liver was getting worse.  My Gastro's reply is always, that goes along with cirrhosis and you did just endure a heavy dosing of a chemo drug...and then offers to cut into me...   I had a visit with my N.D. who suggested I take a Organic Acid Test which is a collection of your morning urine.  The results took a few weeks but showed, now remember my blood test are looking better all the time, that my Mitochondrial markers- Krebb cycle were way out of wack, I have a fungal overgrowth, B vitamins are very low, C's are extremely low and one of my Neurotransmitter Metabolites way way high which really concerned me though the doctor assured me it was most likely due to inflammation...also through a adrenal test, also urine, my adrenals are running at about 23%.... So with his suggestions I am on the path to feeling much better soon!  Already doing better although some of that could just be that going to a Doctor who isn't treating me with standard of care for all, I am getting positive, personal treatment for what is going on INSIDE MY BODY!  I understand a lot of you aren't into natural health but I just thought I would share...

[Else]

The woman who helped me get my denials overturned developed sarcoidosis from ribavirin/interferon in 1999.  It was diagnosed via lung x-rays.  She had been on medication for 24 weeks but had to discontinue treatment.  The good news is that the sarcoidosis went into remission, the bad news was that she still had HCV.

In 2014 her doctor prescribed Harvoni, concluding that the ribavirin required for Viekira Pak treatment of genotype 1a presented an unnecessary risk because of her history of sarcoidosis.

Maybe this is worth bringing up to your doctor.  The return of riba "huffing and puffing" made me think of this other woman's dx. 

[Bree]

Kim, we are all with you in spirit.  Please do whatever you need to do to rest and recover and offer yourself as much self care as you possibly can.  The other things on your plate will work out in time. 

For me, a huge part of what I'm dealing with is acceptance of my situation.  My mind and spirit want to get back out there and go for it... the reality is I've had a series of issues these part 3 months, from a foot injury, joint issues, stomach infection, now a cold, fever and sore throat.  This has involved 3 trips to urgent care.  Not blaming Harvoni at all, but feel fairly certain there is a cause and effect at play with the immune system and post treatment adjustment.

I have seen the post Beto speaks of about the HCV and other viruses "tricking" the hosts cells, dna and/or immune system.  Interesting stuff and I'm sure science will connect a lot of dots... the work they are doing right now is fascinating.

Since a huge part of immunity is through the gut (they say 70-80%), I even have friends bringing me home-made yogurt and a host of other supports (lucky I have awesome friends.)

I'm only doing what I have to do and letting everything else go.  Just got to do it that way right now.

Part of what has been bothering me is that I think I "should" feel good, be back at it, living life to the fullest post treatment.  I sailed through treatment and then right afterward and since then it has been a series of things...  I'm trying to accept that I need to just accept it, be gentle with myself and allow this healing to occur.  Damn, it's not easy though!  All we want is to feel good again!

It's almost like we are being called upon to fine tune our bodies, minds and spirits at a much higher level than we ever imagined.  I'd appreciate a little cruise control for a bit, if you know that I mean.

Anyway, we all love you lots and I know you'll pass through this too!  I'll always be here for you.  You have given so much to all of us!  Love,  Bree

[beto]

Hey Bree.  Nicely put.  Party at Bree's house!!!

Kim...I hope this passes soon.  Ever feel you are being "tested"?  Better write some more.

[KimInTheForest]

Thank you all for your words of support.

Best words in your post, Bree: "be gentle with myself". That phrase just jumped out at me like a neon sign on a dark night. Because I have been the opposite of gentle with myself. And I think that has been the basis of what I am now experiencing.

kim

[KimInTheForest]

Else: I had never really heard of Sarcoidosis before your post. But now that I have done some quick reading, I will say that it goes a long way to explaining many things about my situation. I have always felt this is auto-immune in nature. And whatever it is, my lymph nodes are massively involved. There are other things as well that sync up with that possible explanation.

kim

[Bree]

Hey Bree.  Nicely put.  Party at Bree's house!!!

Kim...I hope this passes soon.  Ever feel you are being "tested"?  Better write some more.

Hey Kim, here's the neon sign:  BE GENTLE WITH YOURSELF!!!

Hey Beto, thanks!  We do still plan on that get together here... as soon as we all get ourselves put back together! ha.

My 24 week blood work is coming up March 14 - aren't you at about the same time?  I'm pretty confident about SVR - just wondering how everything else is collaborating...

[CureSeeker]

I still feel tired, but not as much as did while on treatment.  Maybe ask your Doctor about using D3 with a K-complex?  While fighting a short bout of what appeared to be post-treatment anemia hemophilia from a pinhole size wound I did this for a week.

The combination builds both blood and bone, but you have to be careful with anything so run it past someone who you trust before trying it.

I'm into natural healing too.  Since treatment stopped I'm doing 14 vitamins and supplements a day along with guayusa tea and am about to add aloe vera and resveratrol to my personal chemistry project - but its not good to play with this stuff, especially when it comes to how it reacts in conjunction with the medications we are still waiting to clear from our bodies.

Stress is definitely your biggest enemy.  I once read study of the French, and how they have one of the longest life-expectancies in the world despite the fact that they drink, smoke and eat fatty foods.  The study concluded that it was due to the fact that their government goes out of their way to eliminate stress in their lives.

As others have said, be kind to yourself.  The Serenity prayer says to change what you can, accept what you cant, and be wise enough to know the difference.  I think that applies especially as it relates to the causes of stress in our lives.

Best wishes Kim.  Be happy and well as much as you can. 

P.S.  I read somewhere that Ribavirin blocks the bodies absorption of Vitamin K.

[kimharvest]

To a fellow 3a: you are not alone! I stopped treatment last mid May and feel awful. I don't feel like myself at all. After 5:00 pm I am worthless and I don't accomplish much during the day. I feel like the living dead. Some kind of exhaustion takes over and at night I am dizzy, weak and unable to do anything. And my creativity is gone. I am trying to keep positive but this is getting old. I have a high anxiety days too. My body is freaking out! I have broken out in bumpy rings over my hands, arms and ankles called granuloma annulare. It is unsightly and painful. I also watch my joints grow and they itch on some days. I started an inhaler for diminished breathing since treatment. And the mental clearness i received during treatment has evaporated. I am going to try some oriental medicine and see if that helps. We have to work through the difficult times and rest during the tougher times and try to manage the anxiety and mental changes as best as possible. I have no answers but feel stronger in solidarity. Good luck Kim and my best to your Mom.

[KimInTheForest]

Thank you Kim! Rest and patience do seem to be the keywords. As soon as I start to improve, I rush out and try to get going on all the things I have 'fallen behind' on, and all the things I truly want to do. Mistake, of course. Body and healing have their own pace.

Good luck to you too!

kim

[FutureThinker]

KimInTheForest, are the patience and rest helping yet?  Hope so!!  FT

[KimInTheForest]

KimInTheForest, are the patience and rest helping yet?  Hope so!!  FT

Yes, they are FT. Thanks for asking. But my post-treatment body is indeed in a very precarious condition with regard to inflammatory processes and easily excited immune system/immune response, it seems. It would appear I need to be MUCH more careful about getting stressed or sleep-deprived or run-down than I did pre-treatment. Pre-treatment, the worst that would happen is I might catch a cold if I got too run-down. Now a whole cascade of auto-immune stuff and swollen lymph nodes and plummeting blood cells and fever/sweats occurs if I get run-down. I am still hoping this problem will go away for good with time, if I can keep my body 'non-reactive' for long enough that it finds its way back to normal.

kim

[FutureThinker]

I think stress, keeping it at a minimum if at all possible, probably plays it's role here in how our bodies are handling these major drugs and the recovery thereafter. There is going to be a lot of medical info in the next several years on these drugs' effects, we are the pioneers.  I feel like I'm in the "second wave", you were in the first.  But you are sounding better, for which I am happy to read --- FT