Anyone ever experienced endless outbreaks? Ideas?

[Samesame]

Contracted it 3 years ago, but for over a year have been getting an outbreak every two weeks or so. Recently they have become more and more frequent no matter how health conscious and stress-free I've been. Last week I started taking 1 gm of valacyclovir every TWELVE hours. The result? Not two days go by before a new sore replaces another.

Has anyone else experienced persistence like this or immunity to strong doses of acyclovir? I'm running out of options and hope.

[JBnATL]

I hope you have been visiting your doctor they would have the best advice for you.

Having outbreaks this frequent is very rare and may indicate you have problems with your immune system. But only a doctor could tell you that as well.

I have been coming to this website daily for 6 years and have chatted with thousands of Herpsters and have never encountered anyone with these frequent of outbreaks.

Good luck!

JB

[justanothersufferer]

How about trying Valtrex? So far I haven't had a noticeable outbreak since I've been on it. I was getting them about every two weeks also and decided to take it as suppressive, it's been two months now and I haven't had an outbreak. One red bump that looked to be at a follicle, so I can't confirm anything.

I've heard different antivirals have different effects on people which is why I mentioned it.

[oneday]

I am another person who has constant outbreaks so I feel for you! I just stick it out and wait for it to go, until the next outbreak. What else can you do!? Nothing works for me despite taking medications, vitamins, eating healthy and exercise. I am so over this infection. Praying for a cure. It's so hard to imagine living with this every day for forever. I totally disagree hsv is mild and harmless. Until you have an outbreak constantly, I don't think you would understand what it's like

[Createss Galore]

Contracted it 3 years ago, but for over a year have been getting an outbreak every two weeks or so. Recently they have become more and more frequent no matter how health conscious and stress-free I've been. Last week I started taking 1 gm of valacyclovir every TWELVE hours. The result? Not two days go by before a new sore replaces another.

Has anyone else experienced persistence like this or immunity to strong doses of acyclovir? I'm running out of options and hope.

No, I haven't had such successive OBs, and I've never been on meds. I think, though, that most of us have our own types of suffering, often very severe, as a result of H, no matter how severe or not the OBs may be. So sorry to hear about what you've been going through. I have read of others who have back to back, or never-ending OBs. It makes me angry just thinking about it, but must take deep breaths and calm down (Keep Calm & Prevent An OB) .

When you say you've been watching your health and emotions, does that include diet? Some don't, but I do have varying reactions to certain foods/snacks. I printed out a good lysine vs arginine list, and use it to watch what I eat, when I eat it and how much. Some foods that may not cause a reaction when eating small amounts, can cause OBs when eating a larger than normal serving, and for successive days. Among others, the main culprits are corn (in most forms), chocolate and most nuts.

I do feel though, that some OBs are just aggressive and nothing will stop them. The frequency of those for me is not high, because I seem to be able to lessen the severity/duration of OBs through managing diet/emotions. But I get tired sometimes of all of the restrictions, and I'll eat something, or more of it, than I should.

[Createss Galore]

I am another person who has constant outbreaks so I feel for you! I just stick it out and wait for it to go, until the next outbreak. What else can you do!? Nothing works for me despite taking medications, vitamins, eating healthy and exercise. I am so over this infection. Praying for a cure. It's so hard to imagine living with this every day for forever. I totally disagree hsv is mild and harmless. Until you have an outbreak constantly, I don't think you would understand what it's like

"What else can you do!?" Applies to many areas of life, doesn't it? "I totally disagree hsv is mild and harmless." I agree. 30 years ago I also felt that it was unbelievable, and devastating that I would have this for the rest of my life. Internet sites and groups, online and local, have helped a lot. They weren't around when I contracted this. Some people do find it very hard to empathize with those whose lives have been devastated by this. It's ok to encourage others, but not to make them feel that their feelings are not justified.

[lily37]

i have consistent outbreaks as well.average of 2 outbreaks per month in almost 2 years.for this month,this is my third ob.its very frustrating.how can i not be stressed?! ob = stress. the more stress,the more outbreaks!

i just look at the bright side.at least my obs now heals in 3days.unlike before that it lasts for 5-7days.

[Bkoof50]

I would be willing to chat with you. I have genital hsv1 and have had constant outbreaks back to back for almost a year now. Despite being on valtrex 500mg. If there is a way you can private message me I will share what I have found.

[lily37]

this july is like having a "second " primary ob for me.from ob per week to ob per day. i can even feel my swollen lymph nodes.the sore were painful and now takes a week to heal.at least now,the ob stoped.but its healing slowly

[TheBoz]

Are you 100% sure your symptoms are H? I ask becasue I thought I had constant outbreaks/symptoms but it turned out to be a secondary immune system issue - likely triggered by H, but NOT due to H . . . it took a bunch of doctors and a biopsy to find out what it was . . . and my Dr. said that what I had (type of interface dermatitis) was likely more common than having constant outbreaks from H (which is rare).

The short version of why it (dermatitis) happens sometimes is that some agent (virus, drug, allergy) triggers an immune response that is too aggressive and causes bumps/marks/redness/tingling/etc. even when the original trigger is no longer there - it is often caused by the same t-cells which the body needs a lot of to fight off H, so once you have H, it is easier to get a secondary immune over-response that presents as dermatitis, and the symptoms can vary a lot by individual.

No doctor I saw was able to diagnose visually what it was, it wasn't classic blisters (though some dermatitis types do blister), but it was "suspicious" red marks that come and go - guesses were H (tried increased Valtrex), fungal (tried anti-fungal treatment), and finally via biopsy the diagnosis of interface dermatitis (treated successfully via topical steroids) . . . if you have problematic symptoms you really need to insist on a biopsy and full lab work to try to diagnose the cause (if it is H, the lab will be able to see it, and then you will know) . . . note that the treatment for dermatitis (steroids) reduces the local immune response and is the opposite of what you should do if symptoms are actually caused by H . . . you can't treat it effectively unless you know for sure what is causing it.

Skin conditions are not easy to diagnose without sample under a microscope, even for doctors.

[Demeter]

I have genital HSV 1 and am currently having my second outbreak, only a couple of months after the primary one. Even though I was on 1 mg Valtrex daily as suppressive therapy. Since the second outbreak started I've upped to 2 g Valtrex daily plus Lysine, and it's done nothing. It's been over two weeks. Just today I thought the lesion was FINALLY starting to dry up and heal over but nope, two new little bumps came up on it and less than an hour later they'd swelled into three bigger ones and it's started all over again.

I've been referred to an STD specialist but the appointment is still a month away.

[lily37]

im also planning to visit an std clinic but i have to wait for a month i think.i just got shots for anti rabies.got bitten by our dog.

[GonnaBeOkay64]

Hi,

I have been convinced that I have Genital HSV1. Outbreaks were monthly usually around period time. I am now having back to back outbreaks with the symptoms spreading. I have had 8 negative tests! Although I test positive for HSV1. But the clinic are saying that even their most aggressive HSV2 patients don't have loads of outbreaks like this. I am now on a generic Valtrex which just isn't working as a suppressant. I have had some two weekly breaks.

At present I am on day 12 of thrush plus what I call an outbreak. They are now internal, external, raw red but never scab over. SO I am concluding that my immune system must be in meltdown even though I am pretty healthy, look great, practise yoga and meditation. I think my next step must be to have biopsys to find out if it is indeed a dermatitis. But I do still have GHSV1 (I'm sure) BUT all thes 'outbreaks' can't be herpes, can they???

Am just sitting here waiting on another appointment for testing, I couldn't actually walk for two days last week, so sore, so swollen...

[Createss Galore]

i have consistent outbreaks as well.average of 2 outbreaks per month in almost 2 years.for this month,this is my third ob.its very frustrating.how can i not be stressed?! ob = stress. the more stress,the more outbreaks!

i just look at the bright side.at least my obs now heals in 3days.unlike before that it lasts for 5-7days.

There's always a bright side to find, isn't there? Sometimes it's hard though. Like some say find something to be thankful for. It will help lift depression.

[Secretariat]

what about your blood sugar and iron levels. Have u been tested for diabetes and anemia?

[lily37]

There's always a bright side to find, isn't there? Sometimes it's hard though. Like some say find something to be thankful for. It will help lift depression.

yup! ALWAYS a bright side.what we have may not be curable right now...or not even in my lifetime...but at least it'snot deadly.we still get to live life with just a extra to it.

[reallydepressed]

Are you 100% sure your symptoms are H? I ask becasue I thought I had constant outbreaks/symptoms but it turned out to be a secondary immune system issue - likely triggered by H, but NOT due to H . . . it took a bunch of doctors and a biopsy to find out what it was . . . and my Dr. said that what I had (type of interface dermatitis) was likely more common than having constant outbreaks from H (which is rare).

The short version of why it (dermatitis) happens sometimes is that some agent (virus, drug, allergy) triggers an immune response that is too aggressive and causes bumps/marks/redness/tingling/etc. even when the original trigger is no longer there - it is often caused by the same t-cells which the body needs a lot of to fight off H, so once you have H, it is easier to get a secondary immune over-response that presents as dermatitis, and the symptoms can vary a lot by individual.

No doctor I saw was able to diagnose visually what it was, it wasn't classic blisters (though some dermatitis types do blister), but it was "suspicious" red marks that come and go - guesses were H (tried increased Valtrex), fungal (tried anti-fungal treatment), and finally via biopsy the diagnosis of interface dermatitis (treated successfully via topical steroids) . . . if you have problematic symptoms you really need to insist on a biopsy and full lab work to try to diagnose the cause (if it is H, the lab will be able to see it, and then you will know) . . . note that the treatment for dermatitis (steroids) reduces the local immune response and is the opposite of what you should do if symptoms are actually caused by H . . . you can't treat it effectively unless you know for sure what is causing it.

Skin conditions are not easy to diagnose without sample under a microscope, even for doctors.

I have similar symptoms and if you don't mind, I have some questions. Was your dermatitis localize to a certain area or did it appear in different locations? Did your dermatitis go away completely? How long did you have to apply the steroids?

[delilah9973]

I have suffered for 16 years with recurring outbreaks. Nothing worked for me, right from the start. I have tried insanely high dosages of all 3 meds, and they don't do a damn thing. Doctors have been truly flabbergasted. For me the worst part is that even between the obs, there are tingles and discomfort and I just never really feel normal. It is exhausting. When I first contracted this in 1999, I could not locate anyone else like me. However today, on many forums, I find more and more people like you and me, who do not respond. It could be that acyclovir resistance is on the rise, but more likely, it's that you and I don't break the medications down properly inside our bodies.

On the rare day without symptoms, I am the happiest person in the world. But it always comes back. Very discouraging. Hugs to you - I know how you feel.

 

[Sanguine108]

I'm just going to copy and paste what someone had posted on a facebook group about St. John's Wort

 

"I used to get Obs ever month, Acyclovir didn't work, L-Lysine didn't work, I started taking St Johns Wort (under my drs supervision) and I stopped having Obs all together. I used to get the worst obs and when the St Johns wort knocked it out, I kept taking it for a few years, I finally stopped taking it and now I only get obs once every year and a half. I always suggest that people try it, its not guaranteed to work for anyone else the way it worked for me."

[TheBoz]

 

I have similar symptoms and if you don't mind, I have some questions. Was your dermatitis localize to a certain area or did it appear in different locations? Did your dermatitis go away completely? How long did you have to apply the steroids?

I had it in random places in the "boxer short" area. The steroids took a couple weeks to clear it up completely. I have had no H symptoms at all and no red marks at the moment from dermatitis either. The dermatitis has recurred a couple of times but really minor and hard to notice if you weren't really looking for it - and when it is minor the steroids kill it in just a couple of days. 99% of the time since I first treated it, I have had no issues, totally symptom free from everything. If I hadn't had a biopsy though, I'd probably still think it was H, and I probably wouldn't be treating it correctly, and I would think it was a recurring H-related disaster . . . so, I recommend highly getting a biopsy if you have a visible mark . . . I went to a dermatologist, not an STD clinic, and I basically demanded a biopsy to conclusively tell me what was going on . . . otherwise, I'd still probably be in the dark about it . . . 

[reallydepressed]

I had it in random places in the "boxer short" area. The steroids took a couple weeks to clear it up completely. I have had no H symptoms at all and no red marks at the moment from dermatitis either. The dermatitis has recurred a couple of times but really minor and hard to notice if you weren't really looking for it - and when it is minor the steroids kill it in just a couple of days. 99% of the time since I first treated it, I have had no issues, totally symptom free from everything. If I hadn't had a biopsy though, I'd probably still think it was H, and I probably wouldn't be treating it correctly, and I would think it was a recurring H-related disaster . . . so, I recommend highly getting a biopsy if you have a visible mark . . . I went to a dermatologist, not an STD clinic, and I basically demanded a biopsy to conclusively tell me what was going on . . . otherwise, I'd still probably be in the dark about it . . . 

Thank you for answering my questions, I really appreciate it! I will explore that option.