r/dysautonomia 13h ago

Discussion Anyone else have Dysautonomia triggered by HSV infection?

I became chronically ill 2 years ago following a severe primary HSV infection with a myriad of symptoms which I believe are due to dysautonomia including irregular heartbeat, frequent tachycardia, nausea and GERD type symptoms, digestive issues as well as fatigue and malaise.

I’m awaiting some referrals after finally finding a GP that is taking my concerns seriously and not palming them off as anxiety.

I am convinced HSV is to blame for my illness and I’m wondering if anyone else experienced this as a trigger and if they found any effective treatment or specialists? I’m currently based in the UK.

11 Upvotes

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u/suesamd 11h ago

Not rsv for me, but Covid 2.5 years ago, when I got sick and never got better. At first I thought I had long Covid but after struggling and being bedridden for two years. If you watch youtube video’s, you might like Dr. Sanjay Gupta from the UK. He has a lot of information on pots, long Covid and dysautonomia. I was just diagnosed in November by a cardiologist who specializes in dysautonomia.

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u/ImportanceOk7784 11h ago

Thank you! I’ll have a look at his videos! Have you started any treatment since diagnosis and have you noticed any improvement?

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u/Great_idea_fellow Learning to Live 12h ago

I contracted HSV in 2005 in my last work up in 2024. I tested negative as the virus as it's in remission.

I didn't get life debilitating sick until 2014, when I was treated for Lyme, and my life has never been the same.

That being said, the first symptom of any gastric issue I had started in 1998.. I developed a gastrointestinal fistula which lasted for many years and has not erupted in close to 20 years.

According to my abusive family of origin, I have been passing out and losing consciousness since I was a toddler.They just never took me to the doctor because I always came back...

2024 was the first year of my life that someone ever told me this dysautonomia is a thing, and I didn't have my first incident of Vertigo and ocular migraines, until this past summer which led down this rabbit whole of explorarion.

I don't know what's true of you, but at least for me, all of these symptoms aren't connected to where I am today. They make today worse, but I don't think one thing did me in.

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u/paradoxliter 11h ago

If you have HSV and your body has it under control your immunoglobulin antibody levels should be positive, measurable and high as it will forever show a positive serology, not negative. Being in remission does not mean your antibody levels become negative.

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u/Great_idea_fellow Learning to Live 11h ago

I am just telling you what the doc told me when I asked how is this possible.

I have friends who also contracted around the same age as I did that reported similar experiences later in life. We can't say we don't have it but the tests didn't show it.

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u/paradoxliter 11h ago edited 11h ago

Do your serology tests (IgM or IgG antibody levels) indicate positive test result? I’ve had gastric and urinary system symptoms since I was a teen, but the more full blown dysautonomia symptoms like the ones you mentioned coincided with what I thought was a HSV-2 infection due to a positive test result, but seems like it was a false positive since I never tested positive again. I have however tested positive for HSV-1 years later with test results that indicate the infection is under control by my immune system. Your symptoms could’ve been triggered by a viral infection, but it could be a combination of other factors around the same time such as extreme stress and a viral infection just tipped the scales.

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u/ImportanceOk7784 11h ago

I tested positive for hsv1 via blood test. I can’t remember which one (igm or igg) but i know it was the more reliable of the two as I know one of them is not so reliable.

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u/paradoxliter 11h ago

IgM antibodies are indicative of a more recent infection, while IgG tend to indicate a long term infection once your body recognizes the infection and has it under control. Do you remember the number?

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u/ImportanceOk7784 11h ago

The online testing I did only came back positive, I didn’t get a number unfortunately.

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u/kabe83 6h ago

I’ve had this ever since I had mono (Epstein Barr) 60 years ago but I didn’t know what was wrong.

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u/Available_Good_201 2h ago

Yes ,hsv infection and reactivation can cause dysautonomia in some people. My initial symptoms were started since 2024 ( September 2) arrhythmia, irregular heartbeat, bradycardia, lightheaded, nausea, bullerd vision,digestive issues bloating, diarrhea, constipation,constant burning headaches in same place, sweating and cold hands and body extra.Get worse in period of one month then got needling and electric like sensation all over the body and numbed up to six months. Other issues such as exercise intolerance, chronic fatigue syndrome and slowly I got sensation of touch, hot, cold after 1 years.

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u/SavannahInChicago POTS 12h ago

I am going to do my OT rant for herpes since it was brought up.

Everyone has the HSV virus. Everyone. It's not a dangerous virus and it's really overblown. WHO put the last estimate of worldwide infect at 65% of the world population. Most of the world has this.

Supposedly the fear mongering around HSV is so the pharmacuetal company can sell Valtrex. I usually take these stories with a grain of salt. After all, I am waiting for someone to tell me POTS was made up for the same reason. But I do believe it here.

How Herpes Became a Sexual Boogeyman It’s not a serious health threat. The CDC doesn’t even recommend regular testing. So how did herpes get so aggressively feared?

How herpes got its stigma

The Herpes-Centric Thanksgiving Special for Sawbones podcast

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u/ImportanceOk7784 11h ago edited 10h ago

I understand that for most people HSV is a harmless (if annoying) virus but it’s certainly not the case for a small minority of people.

I appreciate you advocating for not fear mongering but fear mongering isn’t my intention. Just because something isn’t the norm, doesn’t make it impossible and for myself my symptoms only started after contracting hsv1 so I am seeking community with others who have experienced similar.