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Disseminated HSV-1 Infection?
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std_why_me posted:
I suspected many years ago that I had contracted the Herpes infection because I was sexually involved with a girlfriend who had the infection. I had a severe case of the flu, broke out with a groin rash that looked like jock itch - but, didn't itch, and my urine turned very dark - blood in urine; this happened two or three times and stopped. Many years later I contracted a secondary infection Pertussis/Whooping Cough with complications. After the illness a doctor said, "I was compromised during the illness." Although, very rare, I believe I have a disseminated hsv-1 infection. I have to take double maintenance doses of Valtrex to keep the virus in check 500mg 2x/day. Doctors just do not believe that I have a disseminated infection. I even went to see an the chief ID doctor at John's Hopkins University Medical Center in Baltimore, MD, and he told me he unequivically guarranteed me that I did not have disseminated herpes; although, he did not do any testing, he just reviewed my current medical records? Well, I'm not convinced! That's why they're just "practicing medicine." After my illness I felt tired, lethargic, and required excessive sleep; this continued for 1-1/2 years until I had another outbrake similar to the initial outbrake; i.e., rash on inner groin area, dark urine, and dark leg bruises (anyone?), and the virus just took off from there and I got very sick, including severe esophagitis. Finally, "I" insisted my PCP do blood work. When the results came back the doctor said inquisically, "Oh, you're having a herpes titer?" She put me on Valtrex and the symptoms slowly subsided. Now, I must continue the double dose of Valtrex every day. I changed my doctor and went with an Internal MD, and they don't understand either. Now, if the infection started as genital hsv-1; then, spread through the gastrointestinal tract during my severe illness; then, 1-1/2 years later, I broke out with indications like my initial outbreaks many years before, including: burning eyes and arms; severe esophogitis, dehydration, malaise, night sweats; feelings of nerves moving and itching in my head; and, got so sick I had to be hospitalized "on my insistence" because the incompetent ER staff said there was nothing wrong with me. Then, I was crazy, of course. Please can someone, anyone, tell me what the definition of disseminated herpes hsv-1 infection is exactly if I don't have it? Recently, I read that most disseminated cases of are from the Herpes Zoster virus, and a disseminate infection of HSV-1 is almost unheard of - is this correct? Am I just a very rare statistic? THANK YOU!!!
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betsyo1967 responded:
if you had disseminated hsv1, you wouldn't be writing this on the forum right now. It's nothing you would've been able to handle on your own without being hospitalized.

you have no reason to suspect that you have disseminated herpes and you've been told that you don't have it by what is most likely some very well qualified doctors. Even though we "practice" medicine, trust me that we don't do so out of total ignorance!

whatever is going on, it's not likely to be due to herpes. Continue to be seen when you have symptoms for further work up.
Talking about std testing is NORMAL and something we all should be doing EVERY TIME before we have sex with a new partner :)
 
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std_why_me replied to betsyo1967's response:
Well, if I stop taking the massive daily amounts of antiviral medication I am prescribed, I will get very sick, until my body cannot continue - I would eventually die. Would you say that there are different levels of dissemination, then? If I was "compromised" during a severe illness and I had an undiagnosed genital hsv1 infection, would it be fair to say, the infection likely "spead" or "disseminated" to a higher level throughout my body; especially, my gastrointestinal track? It is fair to say that having Herpes seriously compromises ones immune system; and, Herpes is an opportunistic virus? I was a pretty healthy person before the illness and required no medications; now, I am not very healthy and require massive doses of health sustaining medication to keep from getting very sick again?

I wish I didn't have to be a cynic; but, I could fill a book with what I have gone through. I take blame first for making a stupid choice, and believe the medical community can take blame in my burden, as well. PCPs, your job IS - if you don't know - refer, refer, refer, to a specialist. Specialists should do the same. Obviously, everyone makes mistakes - but, don't try to be a hero, or believe that if you don't know, nobody else will.
 
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Terri Warren, RN, ANP replied to std_why_me's response:
Well, if you saw the head of ID at Johns Hopkins, you certainly saw a specialist, but you aren't choosing to take his opinion as to your condition. I'm not sure who you saw, but I know many of the ID folks there, and herpes is one of their specialties. If they say you don't have disseminated HSV 1, then I would say you don't. Also, your description of your first infection doesn't sound like HSV 1 infection genitally to me. Groin rashes are very common in men, and are mostly fungal (jock itch), and we seem them from time to time after having a new sexual partner (yeast in women, jock itch in men).

have you had a spinal tap to confirm that you have HSV 1 in your spinal fluid?

By the way, 1000 mg of Valtrex is a very standard dose, not a high one.

Terri
 
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std_why_me replied to Terri Warren, RN, ANP's response:
Hi Terri ~

My internist told me that I needed a diagnosis; and, I should get out of the area to get one? He sent me to John's Hopkins to what he called one of the creme de la creme medical institutions. I was impressed with the facility; however, I was disappointed that I only had a discussion and no testing was performed. The ID specialist only said that he reviewed my records. I liked the doctor I talked to; but, I was left wondering as to why I was sent there for a sit down discussion and no further testing was performed. The doctor did mention that it might have spread through my gastrointestinal system; but, isn't that a level of dissemination? Yes, I did have a spinal tap and it was clear. So, are you saying, if I don't have the virus in my spinal fluid, I do not have a disseminated hsv1 infection?

Yes, the first outbreak included: dark groin rash that did NOT itch, blood in my urine; redness and light burn on the head of my penis. The rash went away and returned one or two times again with the same symptoms. Thereafter, I could feel burning sensations that would come and go on the tip of my penis; but, the rash did not return. Is there not different strains of these viruses that can manifest in different ways and are often times mistaken for jock itch, pricly heat, etc.? The other indication that began after the initial infection were small dark buises on the upper legs and buttocks in the boxer short region.

In regards to the Valtrex dose I take, would it be fair to say that the dosage I take is high if I take it daily for maintenance over a period of years? Is this dosage typically not reserved for individuals with compromised immune systems?

The other symptom which began after the infection, what I call, "disseminated," was twitching; and, if I reduce my dose of Valtrex to 500mg/day over several weeks the twitching and jumping of my nerves or muscles increases. I still feel the twitching and jumping of my nerves and muscles with 1000mg/day but not nearly as much and usualy while laying or sitting still not while moving around.

Maybe, I should be bottled and studied, huh? I wish it would all go away because it has been a very costly mistake to my physical and mental health, and finances.

Thank you for your comments!
 
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Terri Warren, RN, ANP replied to std_why_me's response:
1 gram of Valtrex per day is the primary dose indication - 500 mg is the secondary dose indication for suppression, so no, 1 gram is definitely not reserved for people who are immunocompromised. None of the symptoms that you describe with your first episode sound herpetic to me. The doctor at Johns Hopkins probably just reviewed your records rather than asking for more testing because testing for herpes is limited, and if you already had a negative spinal tap and an antibody test showing HSV 1 antibody only, there really isn't anything else to do when discussing herpes as the option for your diagnosis. Twitching is not a sign of herpes, nor jumping of the nerves.

I believe that you've taken a positive HSV 1 antibody test, which almost 2/3 of the US population has, and turned it into what you believe is a disease so serious that I doubt you would be writing now if you had it. You have made a unilateral decision that this is problem without any medical evidence to support it. And the best minds in medicine won't impact the decision to have this.

So I'm afraid that you are left with your symptoms unexplained, but my guess is that you will continue to believe what you have chosen to believe, in spite of overwhelming evidence to the contrary.

Terri
 
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Terri Warren, RN, ANP replied to std_why_me's response:
I actually have another thought for you. You could post your problem to Dr. Hunter Handsfield, an extremely well respected STD expert in the US, at the MedHelp STD discussion board. See what he thinks. I would be eager to hear his thoughts on your very challenging situation.
Terri
 
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std_why_me replied to Terri Warren, RN, ANP's response:
Interesting, I'm starting to believe that as much as we know about the Herpes virus we don't know. The experts know what we now know; not what they have not learned or discovered. Just last night I read a post & reply by Dr Hansfield on the discussion board you mentioned. Dr Hansfield pretty much discounted the post as not related to Herpes. Although, the individual had a one night stand, had no indications previously, and by total coincidence, now, has a myridad of symptoms indicative of a nervous system virus, including burning and twitching. The woman he had sex with informed him after sex she had Herpes and was on Famvir; however, the post mentioned that she also had a pretty bad cold (low immunity) and they likely had been drinking (low immunity). She almost certainly passed on the Herpes virus; however, as is the case with some, if not all viruses, they manifest in many different ways depending on the individual. The medical community really needs to "look outside the box or book" for these individuals who experience atypical indications and learn from them. It's really a shame so many people have atypical symptoms and are discounted as imaginary or stress (the medical communty's "cop out").
 
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std_why_me replied to Terri Warren, RN, ANP's response:
Also, I do understand that most people carry Herpes antibodies at many different levels; but, the virus I suspected I carried has gotten all through me when my immune system was compromised due to severe and extended illness. My prior PCP, did Herpes titer blood work at my insistance, when I had the groin rash, small dark bruises on upper legs, blood in urine, severe esophagitis, malaise, fatigue, headaches, red rashing on legs, red spots and blisters at the center of my chest, single large blisters on my neck, arms burning, hair itching, eye swirling visualizations when eyes closed, TWITCHING, and I was having a Herpes titer! My PCP said disgustingly, "It's all through you, isn't it?" I didn't know what she meant at the time; but, now I do. Also, I carry the EBV and VZV; all Herpes family viruses. A neurologist's diagnosis of my symptoms when I was very sick and hospitalized was viral syndrom. In other words, 1 virus x 3 viruses of the same family = viral syndrome. What do you think now - imaginary I suppose?
 
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std_why_me replied to Terri Warren, RN, ANP's response:
Well, I know what my symptoms are, but the medical community is confused. I'll keep trying to help them as I wait for a diagnosis and a cure! Keep the mind open and learning;)))
 
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betsyo1967 replied to std_why_me's response:
I wish I could show you a patient with disseminated herpes, you'd quickly realize how off base you are and see that herpes is not the issue here with you.

you have no reason to be thinking that herpes is the cause of your symptoms. continue to follow up with your providers to try to figure out what is really going on. getting stuck into thinking this has to be herpes when well qualified and very educated medical providers are telling you otherwise, doesn't do you any good at all.
Talking about std testing is NORMAL and something we all should be doing EVERY TIME before we have sex with a new partner :)
 
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Terri Warren, RN, ANP replied to std_why_me's response:
The vast majority of the US population has antibody to VZV (chicken pox virus) and EBV (the cause of mono). And 2/3 of the US population has HSV 1. When you were told you had a viral syndrome, I'm quite sure they weren't referring to your antibody responses to these three herpes viruses, since most everyone has them, but rather, perhaps, some other viral syndome?

However, I doubt that anyone is going to convince you that you don't have disseminated herpes, even though you would likely long be dead if you did, but that's OK. Its seems important to you to hold on to this impression of the cause of your symptoms.

Neither Betsy nor I will post further on this topic with you.

Terri
 
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achang28 responded:
Hello std_why_me,

I totally believe you. I think the one thing the medical community as a whole has discounted when it comes to possibility of disseminated infection is also the notion of primary infection vs. lack of immunity - virology 101. In short, if u lack immunity, and get the virus in your blood, it will spread internally and infect what it can eg. Brain, heart, lungs, liver etc. there's documentation everywhere that speaks to this phenomena. And just because one is not going through septic shock or not having seizures does not mean they don't have it.

I too am suffering from what u described more. On primary infection I accidentally popped the fresh blisters, and normally have bleeds gums. Also, I don't know whether the intestines, or anywhere between the esophagus and the intestines, can absorb the virus into the bloodstream. Maybe, maybe not. There are too many stories that express the same symptoms as u, under similar circumstances.
 
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tacoma3680 replied to Terri Warren, RN, ANP's response:
ive been told the same thing terri you don't know all there is to know about herpes and other illnesses when combined they are ddeadly you people are to quick to dismiss the serverity of a viral infection as hsv1 it can be systemic and deadly


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