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Dessiminated Herpes
I've recently been diagnosed with disseminated herpes. I tested negative for HSV originally, and then positive through ear cultures, neck, and back of the head as well as a blood tests.
I posted pictures in case your curious what this looks like first hand and how much it SUCKS! I have some friends saying oh I have herpes or genital herpes or w/e, but you really can't compare something like that to disseminated herpes. It's a much different experience.
I wasn't hospitalized as it was misdiagnosed originally and when the pain got worse I had two separate dermatologist recommending daily suppressive medication, one dermatologist recommends 6 months while the other recommends up to 1 year. (2 valtrex a day for the first 2 weeks, and then one daily for up to a year) One also brought up the possibility of using intravene medication (through an IV?) if symptoms didn't improve.
I thought I may be immunocompromised as this is a rare diagnosis but they can't find any other auto immune diseases or reason I may be. They've ruled out ezcema and eczema herpeticum, atopic dermatitis and dermatitis herpetiformis,
I only have 1 known allergy but the allergist I saw doesn't believe it to be allergy related because the blisters were starting to go away by the time the allergy was ever diagnosed and at the same time they confirmed I don't have celiac disease and no gluten allergies. Either way I've chosen to go gluten free in an attempt to boost my immune system naturally. The allergist recommended reincorporating gluten as she didn't see a need to cut it out.
I test negative for every other STD i've been tested for including HIV, ghonorhea, chlamydia, syphilis, hepatitis, the typical 12 STD test. I've had multiple organs and everything tests fine. I'm at a loss for what to do.
Here's my questions.
1) My research shows this is very rare and happens when you're immunocompromised or during a primary infection? If I've had cold sores my entire life, is this likely to have come from me? I've been confirmed HSV2 negative through IGG multiple times. How likely am I to autoinnoculate the virus myself without outside factors?
2) The doctors recommended suppressive medication for 6-12 months for Valtrex just for herpes as the rashes occurred multiple times over one year. (I was severely depressed and stressed mainly from the virus being in these locations.) After suppressive medication, how likely is this to recur?
3) What else can I do besides suppressive medication and boosting my immune system so I can get back on with my life?
4) Obviously I would need to share this information with future partners because it is the right thing to do, but are the lesions likely to recur and should I worry about viral shedding in all these locations even when blisters aren't present? I figure if I had close to 30-40 lesions, I've read that HSV1 sheds asymptomatically 10-15% of the time without lesions and I really don't want this spreading anymore than it has.
5) I keep my head trimmed as I've had a few recurrences and want to be able to keep an eye out for symptoms, (I make sure to use a trimmer and not a razor to prevent spreading and I have my mom do it carefully to prevent scratching) When I didn't keep my head trimmed is when it spread because I couldn't be aware of lesions. Would you recommend continuing to keep my head trimmed and for how long?
6) What did I do to deserve this!!@!@!@!@!@!@
Thank you for your help, I was misdiagnosed by a quite a few doctors who refused to swab and biopsy and it continued to spread through their recommendation of fungal, antibacterial, and steroid creams. Finally a couple dermatologists picked up on it, this really sucks! I know this is complicated, but any recommendations or suggestions would be immensely helpful. I just want to get through this. :(
I posted pictures in case your curious what this looks like first hand and how much it SUCKS! I have some friends saying oh I have herpes or genital herpes or w/e, but you really can't compare something like that to disseminated herpes. It's a much different experience.
I wasn't hospitalized as it was misdiagnosed originally and when the pain got worse I had two separate dermatologist recommending daily suppressive medication, one dermatologist recommends 6 months while the other recommends up to 1 year. (2 valtrex a day for the first 2 weeks, and then one daily for up to a year) One also brought up the possibility of using intravene medication (through an IV?) if symptoms didn't improve.
I thought I may be immunocompromised as this is a rare diagnosis but they can't find any other auto immune diseases or reason I may be. They've ruled out ezcema and eczema herpeticum, atopic dermatitis and dermatitis herpetiformis,
I only have 1 known allergy but the allergist I saw doesn't believe it to be allergy related because the blisters were starting to go away by the time the allergy was ever diagnosed and at the same time they confirmed I don't have celiac disease and no gluten allergies. Either way I've chosen to go gluten free in an attempt to boost my immune system naturally. The allergist recommended reincorporating gluten as she didn't see a need to cut it out.
I test negative for every other STD i've been tested for including HIV, ghonorhea, chlamydia, syphilis, hepatitis, the typical 12 STD test. I've had multiple organs and everything tests fine. I'm at a loss for what to do.
Here's my questions.
1) My research shows this is very rare and happens when you're immunocompromised or during a primary infection? If I've had cold sores my entire life, is this likely to have come from me? I've been confirmed HSV2 negative through IGG multiple times. How likely am I to autoinnoculate the virus myself without outside factors?
2) The doctors recommended suppressive medication for 6-12 months for Valtrex just for herpes as the rashes occurred multiple times over one year. (I was severely depressed and stressed mainly from the virus being in these locations.) After suppressive medication, how likely is this to recur?
3) What else can I do besides suppressive medication and boosting my immune system so I can get back on with my life?
4) Obviously I would need to share this information with future partners because it is the right thing to do, but are the lesions likely to recur and should I worry about viral shedding in all these locations even when blisters aren't present? I figure if I had close to 30-40 lesions, I've read that HSV1 sheds asymptomatically 10-15% of the time without lesions and I really don't want this spreading anymore than it has.
5) I keep my head trimmed as I've had a few recurrences and want to be able to keep an eye out for symptoms, (I make sure to use a trimmer and not a razor to prevent spreading and I have my mom do it carefully to prevent scratching) When I didn't keep my head trimmed is when it spread because I couldn't be aware of lesions. Would you recommend continuing to keep my head trimmed and for how long?
6) What did I do to deserve this!!@!@!@!@!@!@
Thank you for your help, I was misdiagnosed by a quite a few doctors who refused to swab and biopsy and it continued to spread through their recommendation of fungal, antibacterial, and steroid creams. Finally a couple dermatologists picked up on it, this really sucks! I know this is complicated, but any recommendations or suggestions would be immensely helpful. I just want to get through this. :(
I had some follow up questions since my previous questions seemed to have been missed. I've read a few more posts and you mention something about different hsv 1 strains. I believe Terri has mentioned this before as well and then I read a couple scientific journals about it.
So my questions are,
Is it possible to contract two different strains of hsv 1?
And if so, would inoculation be possible if your infected with a new strain of hsv1?
The reason I ask is at the time I tested completely negative for everything single std originally immediately after the encounter and now it's in my ear, neck, head, etc.
You've also mentioned in several previous posts that when it spreads in the ganglion nerve, it only spreads a couple inches or so, while in my case it's covering the majority of my head.
So my questions are,
Is it possible to contract two different strains of hsv 1?
And if so, would inoculation be possible if your infected with a new strain of hsv1?
The reason I ask is at the time I tested completely negative for everything single std originally immediately after the encounter and now it's in my ear, neck, head, etc.
You've also mentioned in several previous posts that when it spreads in the ganglion nerve, it only spreads a couple inches or so, while in my case it's covering the majority of my head.
bump with these questions:
The reason I ask about inoculation is these rashes and lesions bargain appearing within weeks of my ex leaving me and so I was wondering if a jealous or vengeful ex may have spread it like this on me, she also refuses to get tested with me and claims she's clean with no test....
Should I continue to keep my head trimmed to be on lookout for lesions so I can prevent them from spreading in the future? I've had back to back outbreaks since she left and was originally prescribed episodic treatment and now suppressive medication.
I've been trying to workout daily and I've switched to a paleo diet I'm doing everything I can to recover. Are there any other recommendations to try and make this so it doesn't recurr. Or it doesn't recur as often?
I've read stories of some people who get repeated outbreaks like I have and others who go years In between outbreaks. I'm wondering if it has to do with some peoples immune system being better than others? And if I can do anything at all to reduce recurrences, it has triuly been disabling and I haven't been able to work for months
The reason I ask about inoculation is these rashes and lesions bargain appearing within weeks of my ex leaving me and so I was wondering if a jealous or vengeful ex may have spread it like this on me, she also refuses to get tested with me and claims she's clean with no test....
Should I continue to keep my head trimmed to be on lookout for lesions so I can prevent them from spreading in the future? I've had back to back outbreaks since she left and was originally prescribed episodic treatment and now suppressive medication.
I've been trying to workout daily and I've switched to a paleo diet I'm doing everything I can to recover. Are there any other recommendations to try and make this so it doesn't recurr. Or it doesn't recur as often?
I've read stories of some people who get repeated outbreaks like I have and others who go years In between outbreaks. I'm wondering if it has to do with some peoples immune system being better than others? And if I can do anything at all to reduce recurrences, it has triuly been disabling and I haven't been able to work for months
Not disclosing your std status is how stds spread in the first place. I Like to think of myself as an admirable person so not disclosing is not an option for me. But thank your words.
I'm more concerned about getting over the pain that has been disabilittating and not aloud me to get back to work. Good news is I just got off the phone with Walgreens and apparently medical does cover the 90 pill prescription with brand name just to give you an idea of how serious this is. This ***** painful.
I'm more concerned about getting over the pain that has been disabilittating and not aloud me to get back to work. Good news is I just got off the phone with Walgreens and apparently medical does cover the 90 pill prescription with brand name just to give you an idea of how serious this is. This ***** painful.
Its not as bad as genital herpes and no you probably wont have repeated outbreaks with meds and self care, really this isnt much different than shingles except for the fact that it reoccurs,if you think about it it is just the social stigma and surprise you dont even have the stigma of genital herpes and dont have to disloce before sex and no one would have ever know if you dont tell them and no one i going to catch it off your ear or back of the head. What else are you looking for ? There is no major problem here :))
My cultures from the ear and neck are but nothing on the lips. If I've had cold sores in the past it's never been diagnosed and I tested negative about a month after the encounter I believe it had spread. I don't know if what I've had in the past were aphous ulcers or canker sores, stomatitis because your generally not going to get it in multiple locations outside of a primary infection.
The reason I ask about inoculation is these rashes and lesions bargain appearing within weeks of my ex leaving me and so I was wondering if a jealous or vengeful ex may have spread it like this on me, she also refuses to get tested with me and claims she's clean.
Should I continue to keep my head trimmed to be on lookout for lesions so I can prevent them from spreading in the future? I've had back to back outbreaks since she left and was originally prescribed episodic treatment and now suppressive medication.
I've been trying to workout daily and I've switched to a paleo diet I'm doing everything I can to recover. Are there any other recommendations to try and make this so it doesn't recurr. Or it doesn't recur as often?
I've read stories of some people who get repeated outbreaks like I have and others who go years In between outbreaks. I'm wondering if it has to do with some peoples immune system being better than others? And if I can do anything at all to reduce recurrences, it has triuly been disabling and I haven't been able to work for months
I just want to get back on with my life. Who is going to want someone with a head like mine? I'm just trying to make the best of a bad situation.
The reason I ask about inoculation is these rashes and lesions bargain appearing within weeks of my ex leaving me and so I was wondering if a jealous or vengeful ex may have spread it like this on me, she also refuses to get tested with me and claims she's clean.
Should I continue to keep my head trimmed to be on lookout for lesions so I can prevent them from spreading in the future? I've had back to back outbreaks since she left and was originally prescribed episodic treatment and now suppressive medication.
I've been trying to workout daily and I've switched to a paleo diet I'm doing everything I can to recover. Are there any other recommendations to try and make this so it doesn't recurr. Or it doesn't recur as often?
I've read stories of some people who get repeated outbreaks like I have and others who go years In between outbreaks. I'm wondering if it has to do with some peoples immune system being better than others? And if I can do anything at all to reduce recurrences, it has triuly been disabling and I haven't been able to work for months
I just want to get back on with my life. Who is going to want someone with a head like mine? I'm just trying to make the best of a bad situation.
Yes, herpes antivirals are covered on insurance. If your insurance doesn't make valtrex affordable, discuss with your provider switching to acyclovir which is cheaper.
You've had hsv1 orally previously and your cultures are also hsv1+ correct? That means that your hsv1 infection just went a bit wonky and spread to a different group of nerves. This happens sometimes even to the healthiest of us and has no indication of you being immunosuppressed or anything else.
Does immune system boosting help herpes? No, not really. Just staying healthy in general is all you can do. The virus reactivates on its own periodically regardless of what you do healthwise. Daily suppressive therapy though will help to keep the virus from reactivating fully and causing obvious recurrences on a regular basis. Only time will tell how often you will get recurrences on suppressive therapy but they should be significantly less than you were getting off of it.
when talking to partners, it's a hsv1 oral infection that is the issue. The other areas you've been having recurrences at aren't contagious in between obvious lesions.
You've had hsv1 orally previously and your cultures are also hsv1+ correct? That means that your hsv1 infection just went a bit wonky and spread to a different group of nerves. This happens sometimes even to the healthiest of us and has no indication of you being immunosuppressed or anything else.
Does immune system boosting help herpes? No, not really. Just staying healthy in general is all you can do. The virus reactivates on its own periodically regardless of what you do healthwise. Daily suppressive therapy though will help to keep the virus from reactivating fully and causing obvious recurrences on a regular basis. Only time will tell how often you will get recurrences on suppressive therapy but they should be significantly less than you were getting off of it.
when talking to partners, it's a hsv1 oral infection that is the issue. The other areas you've been having recurrences at aren't contagious in between obvious lesions.
Oh, and last question, does anyone know if Medical covers this medication? I recently lost my job and insurance so Medical is all I got and the medication is very expensive.
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Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
