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Trickster Virus Story


venus333

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Posted (edited)

Hello there fellow sufferers, 

I want to share my story so we can connect with people who have been dismissed by doctors/told they were crazy/told there is no hope. We need to connect and bring attention to this issue, so here is my story. 

Im in my early thirties, female. Got HSV 2 in 2015. at first did not know I had it, barely any symptoms. Small lesion noticed that went away quickly. Got diagnosed in 2016 as the symptoms got worse and it has gained strength, by then I was getting it every month around my period. Decided to start antivirals as symptoms got unbearable. Acyclovir worked wonders first year on suppression therapy - no symptoms, barely any prodrome. After that continued episodically meaning monthly during my period. Started to feel prodrome in 2018. In 2021 switched to Valtrex and first week on therapy the virus broke out, small bump, did not turn into a lesion. Though it was a fluke. I started to take longer breaks between therapy, switched back to Acyclovir and it worked again. A year later had a miscarriage and had to get abortion. At that point prodrome kept getting stronger and was giving me more issues and pain. At some point after my period got horrible itch and pain while on ACV (3 times a day, 400 mg) and boom noticed around 10 bumps. This is when things changed and it starts to get interesting.  I thought maybe I ate too much arginine, had alcohol so this is another fluke. The bumps eventually went away after 2 weeks on ACV. Notice- NO SORES. Never opened. Next month - same thing, except this time they looked like pimples, small. Tried Valtrex this time, the more and longer I took it the more non ulcerative lesions I would get ("atypical lesions" as revered to by researchers). The month after that I seized therapy in hopes the virus will return to its natural state. I was prepared for the bumps to turn into sores and to suffer. Boy was I wrong. The bumps got even smaller without antivirals, do not turn into lesions or open and go away on their own in 2-3 days but come up in a different spot shortly. They never turn into lesions and contrary to what I believed it is NOT because of AVs since I am no longer on them. A lot of you have reported that this happens in one was or another similar to me on AVs

After months of non stop reading all kinds of studies here is what I found. In some immunoCOMPETENT patients after long term antiviral therapy the virus loses TK gene ( needed for viral phosphoration for Acyclovir or its derivatives to stop replication). Thymidine Kinase is needed for the virus to cause cytophatic effects on cells (meaning kill them), once the virus looses TK gene or has a weakened TK sequence its ability to kill cells also weakens ( I will attach studies below). That is why the appearance changes, the virus has actually been weakened and is pursuing a different strategy.It appears it can no longer kill cells in the epidermis for me. So for those of you who still get OBs while on high doses of any Acyclovir related antivirals, it may very well be that the OBs have simply changed shape and that your AVs are not helping at all.

I have seen people being ridiculed for making statements that OBs dont respond to AVs. People have said ( including my OBGYN!) that its unheard of unless you are immunocompromised. Unfortunately it is possible, and it is well documented and backed by studies. 

The best thing we can do right now is connect with is each other, share our stories and prove that we are right.

Thank you for reading and hoping to connect with as many of you as possible so that we can bring light to this issue. This problem will not solve itself until we all start talking and sharing, we are invisible until that happens. 

https://www.nejm.org/doi/full/10.1056/nejm199312093292405

https://academic.oup.com/jid/article/192/1/156/872258

https://www.frontiersin.org/articles/10.3389/fmicb.2019.00941/full

Edited by venus333
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Thanks for Sharing your story… I am just recently diagnosed so I can’t share my experience with the antiviral yet.. I have only taken it for five days..

your point is very interesting!

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@venus333 interesting to read your observation. 

I am the one who has atypical presentation of GHSV infection which is not responding to antivirals. At least doctors say it's atypical. Through all these years I am reading more and more stories from people who somehow developed resistancy to antivirals even though they are immunocompetent although medical community says this only happens to immunocompromised individuals. This is simply not true.

I can't remember when was the last time I had classic outbreak, but I do suffer from prodrome symptoms which never turn into classic outbreak. Especially now that I am pregnant. 

Thank you for posting this!

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@venus333 when I say atypical I mean I don't have classic outbreaks anymore. I suffer from prodrome symptoms which usually never progress to classic outbreak. I  am not sure is this prodrome symptoms or post herpetic neuralgia. I am not taking acyclovir anymore since it does nothing for my prodrome symptoms. My last classic outbreak was seven years ago, and I had this infection 15 years, maybe even longer. 

Now that I'm pregnant, symptoms become almost constant. Probably due to constant virus activity. Pregnancy has huge impact on immune system and of course on hormons and as a result you have HSV virus going crazy. I am afraid of childbirth because God knows how my body will react and how virus will behave. 

I must add I am one of those who continue to test negative on blood test but had two positive PCR swabs in the past.

Edited by Borealis
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  • Posts

    • Borealis
      @Kata33 what do you mean by odd sensation when passing urine?  If I may ask where was location of your outbreak? 
    • Kata33
      @CHTJust a positive result, no numbers were mentioned, no suggestion of another test. Why would these be important? Sores all healed, feeling better each day, though I still have some residual soreness, odd sensations when passing urine etc, and I get tired/achy if I'm too active. But it's only been two weeks, so I guess that's to be expected? Thank you so much for all if your responses, it is so much appreciated!
    • CHT
      Hi Kata.... sorry for the not so good news....I believe you said it was a swab test, correct?  Did the results come with a number or just a "positive" for HSV2?  Did your doctor suggest taking an IgG antibody test at some point?   Are you doing okay?   
    • Naturalady8
      I wrote it for you, your wife and all viewers struggling with hsv. Since you don’t know much about hsv, and many believe it is mild. It is definitely not mild for many people, usually women suffer the worst. It’s good to learn from veterans who have researched this topic for years.
    • Kata33
      Results arrived this morning. HSV-2. Hey ho.
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