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Author Topic: PLEASE READ> Dormant Lyme awoken by Harvoni, explains post problems for me.  (Read 14079 times)

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Offline sunset

  • Newbie
  • Posts: 1
Hello all, I feel it's important to share this. I struggled horribly after treatment with RA like symptoms, tinnitus, joint and muscle pain. Muscle weakness, peripheral neurapothy, visual disturbances, muscle twitching, etc. no one could help me, not even mass general hospital. Because of the timing of it and I didn't test positive on the Lyme western blot test, it was ruled out. But even the CDC says Lyme is a clinical diagnoses not a serological one. I have learned a TREMENDOUS amount about Lyme now and how it's pretty much transmitted in MANY MORE forms then just ticks , it can sit in your body for decades without symptoms, it is every where in the world and many, many people have it and do not know. I believe the Harvoni treatment affected my immune system allowing a dormant infection to gain ground. As soon as I started antibiotic treatment, ALL of my symptoms cleared up. But because it took so long to figure it out. I am still on antibiotics, months later. But I figured it out, thank god. If you think this is possibly your problem seek out a Lyme Literate Doc. and not an infectious disease doc. There is a divide in the medical community over the treatment of Lyme. And only LLMD's know what to look for and don't trust testing. It is believed Lyme is also sexually transmitted as it is a Spirochete form of bacteria,( the same family as Syphillis) and can cause brain fog and memory like issues as well, Kris Kristofferson was diagnosed with dementia and has now learned it is Lyme.

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Thank you for sharing this info, Sunset. I too had a serious condition 'awakened' and activated during my Harvoni+ribavirin treatment last year. The disabling symptoms from that developed during treatment (I thought they were drug side effects, not a separate disease process). And they persisted for many months after until I finally got a firm diagnosis more than a year post-treatment. I am now working very hard on non-toxic health protocols to unwind it. In my subsequent reading post-treatment, I have come to see how Harvoni and ribavirin could each have contributed to/caused my problem -- Harvoni because of its hypothesized effect of suppressing immune surveillance, and ribavirin because of its effects on red blood cells and bone marrow.

Good luck!
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Hi Sunset and thanks for your post.  There is still much to learn about this treatment, as evidenced by so many different side effects and their length posted here.

AASLD's Liver Meeting starts in Boston next week, and I am hopeful there will be some new, pertinent data presented that will begin to shed some light on these new DAAs and how many can react to them so differently.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
I am simultaneously sorry and glad - sorry that you experienced this and glad you have an explanation. I also had a condition that was reactivated, but in my case, it left swiftly, never to return (it's now 3 years post-treatment). I hope you reported this - I know we don't hear back from the FDA, but despite the agency's imperfections, it is still the best way to get this info into the mainstream. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
What scares the hell out of me is how all of these conditions seem to be attributed to removing HCV from your system rapidly! Who could have possibly known that removing HCV could cause the activation of other existing conditions. Again blaming the treatment drug is not rational here there must be something else at work and my suspicion is that HCV is a very sophisticated parasitic retro virus that enhances the environment in which it lives by doing things to the human immune system that actually help keep the infected individual alive and resistant to competitive diseases.

Either way I sure as hell do not want HCV back!
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Perhaps but there are so many other factors that it is impossible to draw a straight line between cause and effect.
1) There is the drug(s)
2) There are the meds taken to manage side effects
3) There is the fact that hep C, like other viruses, may cause a secondary effect, and simply removing it (regardless of drug) may cause a cascade of events in some people (like GBV-C does with HIV)
4) Then there is age and luck and coincidence and unknown factors

In my mind, the only clear path to understanding is the collection of evidence. I encourage people to speak up about their experiences, but keep an open mind. If I blame x on y, then I'll stop looking for other answers, and never know if there is a z.   
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline SongofLove

  • Member
  • Posts: 11
Lyme disease and Candida overgrowth share many of the same symptoms. It is possible to have both at same time. It is very important to be aware this. Research my friends. Research...My recent 12 week EOT test was und. :D...Battling the evil candida fungus now tho...Peace.

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Lyme disease and Candida overgrowth share many of the same symptoms. It is possible to have both at same time. It is very important to be aware this. Research my friends. Research...My recent 12 week EOT test was und. :D...Battling the evil candida fungus now tho...Peace.

Congrats on reaching SVR12 SongOfLove! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline SongofLove

  • Member
  • Posts: 11
Thank you Kim.

Offline morab

  • Member
  • Posts: 232
  • Lives in the woods
Lyme disease and Candida overgrowth share many of the same symptoms. It is possible to have both at same time. It is very important to be aware this. Research my friends. Research...My recent 12 week EOT test was und. :D...Battling the evil candida fungus now tho...Peace.
What test do you ask for regarding Candida, My dr said there is none.
morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

Offline SongofLove

  • Member
  • Posts: 11
https://www.questdiagnostics.com/testcenter/testguide.action?dc=TH_Candida_DNA     Hello Morab. True. There is no one positive/negative test. My doctor thought i was crazy too, but he ordered the blood culture test on my demand. But i had already diagnosed myself. Sometimes you have to be your own judge of YOUR health. Please do the research on 'Candida/auto-immune disease', you'll be amazed...It seems, and i think you'll agree, that once the evil virus has left the building, it leaves us prime targets for for pre-existing issues, as in my case, to flourish. I say pre-existing because just before Harvoni, i had a ringworm that the doc could not get rid of with prescribed anti-fungal. That is a sign of possible Candida problems, as i now know. And there were other signs and symptoms...You would think that more test would be available. But i wont speculate on why there isn't. Doctors know that yeast infections are real. They also know that Candida shows up all the time in ICU patients. But if Candida is the underlying cause of some auto-immune diseases, which many 'alernative' health health folks believe, somebody may not want that test. Just sayin...The web is your friend Morab. Awareness is key.Peace.


Offline kimharvest

  • Member
  • Posts: 35
  • Fighting to Get Back my Life - GT 3a
    • Vital Wonders
I know after my treatment I bloomed into mono. Epstein Barr Virus has riddled my body since. In a year now I have a constant headache, extreme tiredness, very high blood pressure, joint growth, brain fog, and a bloom of granuloma annare. I havent had a normal day since stopping solvadi/riba, one and three quarters year now. Now I worry about losing my sad excuse for healthcare. Did I mention bad anxiety? I feel as though I was molested by an above suspicion entity and left me ashamed and hurting and basically left for dead. Gilead never showed any care after collecting their due. Not even collecting data. That says it right there, they are in it for the fast bucks and care not for any residual damage to their guinea pigs.
kimharvest
"Eat healthy food and drink pure water for a healthy life."
GT 3a  15,000,000 VL.
Started Sovaldi/Ribavirin 1/26/15 for 24 weeks.
Doctor Office Dropped me on 5/8/15 at 14 weeks;
Finished 4 months total, two months short.
I do not recommend Grand Junction Gastro!
Not Detected at 3, 6 & 12 months.

Offline AussieRosa

  • Member
  • Posts: 226
Same thing happened to me with Helicobacter Pylori being activated during treatment. At least in my case a week on extra meds cleared it right up.
Gt 1a
contracted 1983
Fibroscan 6.1
Treatment naive
VL 2.97M
ALT 38
AST 47
Started Viekira Pak + Ribavirin Tues 19th Jan 2016
Week 4: VL Undetected!
March 5th Ribavirin dose reduction to 800mg from 1000mg
EOT April 11th 2016. VL Not Detected
12 Weeks post EOT: SVR12. Cured with a capital C!!
6 months post EOT: Undetected :-)

Offline WholeFoods

  • Member
  • Posts: 73
This thread keeps niggling me every time I come to this site and see it. Reason is, at some point before or during Harvoni treatment, I sustained an insect bite near my ankle. I brushed it off as a spider or flea bite that, for whatever reason, got a bit more irritated than the norm. It never got the rash, but it did itch, so I put rubbing alcohol on it several times to bring the itch down. It puffed up quite a bit and took a long time to heal. It left an round brown scar that gets itchy and flaky from time to time. After Harvoni, I developed severe headaches and regular bouts of joint pain, plus a reduced ability to tolerate any form of exercise including vacuuming, sweeping, etc. I get tightness in my chest and fatigue. Bouts of anxiety and intolerance to stress. Numbness in hands that comes and goes, mostly when resting. It's been almost two years since EOT. Problem is, that bug bite stays in the back of my mind because it was so odd. The risk of Lyme is low where I live. I just can't remember exactly when I got that bite. Maybe it's the anxiety that's making it bother me, lol! Anyway, I would just like these newer symptoms to go away, but I guess as one ages, it's not a practical expectation, is it. Thanks for the ramble.

 


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