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MyOhMy2018

Outbreaks on valacyclovir

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MyOhMy2018

Hello everyone,

Long story short - I had my first outbreak about a year ago, got swabbed and turned out positive to HSV-2.

For the first month, I only took valaciclovir when I had an outbreak but seeing that I still had back to back outbreaks, the doctor decided to put me on suppressive therapy. This has never really helped, unfortunately.

In the summer, I had no outbreaks for like one and half month but apart from that, I've been having outbreaks every other week. I saw a dermatologist about two weeks ago and he swabbed another lesion that was in my mouth, which in turn revealed positive to HSV-1, although I was on valtrex at that time. He seemed very surprised and said that not responding to valaciclovir is something extremely rare... But reading testimonies here, it doesn't seem to be as rare as people think.

The last two~three weeks have been the worst for me: my outbreaks won't stop and it seems to be getting worst and worst. 2 days ago, my doctor put me on the non-generic valaciclovir  just to see if I responded better to the "real" drug but this has not helped so far. 

I'm a healthy adult, I eat well, get plenty of sleep (I even take naps ) and exercise 4 to 5 days a week. I supplement daily with organic acerola vitamin C (1000mg), lysine (1 to 2g) and magnesium (500 mg to 1g) and take 1 x 500mg valtrex in the morning and evening.

 I'd like to hear stories of people who managed to stop or at least reduce their recurrences and what worked for them. I really need help because that is killing my sexual life, and I'm not even 30. I've read a lot of studies on the internet about people developing resistance to ACV and the likes but none of them mentions an alternative solution for people like me. Actually, I'm not even sure I have developed resistance to ACV because the drug never really worked for me. Moreover, the very few acknowledged ACV resistant cases were in majority immunocompromised patients and as far as I know, this is not my case. I wouldn't really care about that virus if I had only one or two outbreaks a year, but having it non-stop is very hard to handle psychologically. I can't have sex, drink, eat chocolate... Even read that exercising too much could trigger outbreaks. What's left for me to do? Shave my head, go to Bhutan, live with the monks and meditate 12 hours a day? xD

Edited by MyOhMy2018

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IcantThinkofaName
10 hours ago, MyOhMy2018 said:

What's left for me to do? Shave my head, go to Bhutan, live with the monks and meditate 12 hours a day? xD

I've also considered this option..and its still looking like a good idea.

so...

Did you try any other Av's like famvir or privetir? I think there are some others too... 

Up the vitamin C, check your vit D levels via bloodwork...

Are you stressed out or have a stressful lifestyle ( aside from having HSV, which alone is a stressor)?

There are no other health issues going on ?

How hard are your workouts? The last few Obs I had were after very intense resistance/weight workouts, and I was completely exhausted after...combined with a night of bad or little sleep.

Tried L- glutamine supplementation?

Lithium orotate ( its a supplement too) has been known to supress the virus/replication too. I have also read it could mutate it...not sure how accurate that is, or if there was a study that proved that..maybe google it.

I took The lithium one time and it was an abbreviated/shorter Outbreak than others...but I was also taking alot of vit C, or it could have happened for another reason...I'll never know for sure.

but...mediating for 12 hours a day might help too... (seriously) but just don't meditate on HSV.

Or maybe in another year your body will get a better hold on the virus and can cope better.

it is depressing, I can relate.  My Obs have finally  lessened after 1 yr and 3 months. I still have almost daily sensations, tingling though..I'm probably contagious AF. Sex isn't really on the radar anymore. so No reason to take the AVs as they cause some side effects for me. Time to join that monastery. There are more important things in life than sex, right?  (thats what some people are telling me and I want to punch them. I really liked/enjoyed sex)

Hang in there. I was told after the 6 yr mark, HSV becomes a non issue in your body. ( thats what one of my Drs told me, so  not sure how accurate that is either, but I guess it gives me 4.5 years of hope)

let me know if any of this helps or you find something that does.I wish you the best.

 

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StayingUpbeat

First, that your doctor simply tried non-generic valacyclovir instead of referring you to a dermatologist is surprising.  If you are taking daily Valacyclovir, and still have frequent visible lesions, a competent dermatologist would prescribe something called Foscarnet.  It is unfortunately an injection and (I believe) it must be administered weekly at an injection center or hospital.  However, the combination of weekly foscarnet and daily valacyclovir would almost certainly eliminate your visible outbreaks.  It's important to note that no current drug combination is known to totally eliminate HSV shedding.  You would need to have routine blood monitoring on this combination as Foscarnet has some potential side effects.

Next, there are members on this site who have been able to obtain a drug called Amenalief from Japan.  It's a recently approved (in Japan) member of a class of HSV drugs called Helicase Primase Inhibitors (HPI): https://www.mimaki-family-japan.com/item/detail?item_prefix=TF&item_code=705711&item_branch=001 It is bio-similar to a drug called Pritelivir which is currently in clinical trials in the US for HSV in the immuno-compromised (i.e. organ transplants, HIV).  A member in this thread talks specifically about his experience taking 100mg/day to help with outbreaks.  It unfortunately sounds very expensive to take suppressively. 

Finally, there was recently a small successful clinical trial on the use of topical squaric acid dibutylester (SADBE) for the control of HSV.  If your doctor is comfortable trying alternate therapies to control your outbreaks topical SADBE is an FDA approved cream that you could discuss trying.  My recommendation would be to bring this paper discussing the trial to your next doctor's visit.  It would be an off-label use but the cream is relatively benign.  It's most frequent use is clearing-up cutaneous warts on children.

As always none of this discussion constitutes medical advice (I am simply a middle-aged engineer not a doctor) and you should always follow the direction of your doctor or medical professional over advise found on the internet.  One of these three options may however improve your situation.  Unless there is something other than HSV going on.

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MyOhMy2018
7 hours ago, IcantThinkofaName said:

Did you try any other Av's like famvir or privetir? I think there are some others too... 

Thanks for the replies, all!

Haven't tried Famvir nor privetir yet. In the country where I am from (France), these drugs seem to be only available at the hospital. Asked a couple pharmacists and they didn't seem to know about Famvir. 

7 hours ago, IcantThinkofaName said:

Up the vitamin C, check your vit D levels via bloodwork...

That sounds like a good idea, I'll probably do that.

 

7 hours ago, IcantThinkofaName said:

Are you stressed out or have a stressful lifestyle ( aside from having HSV, which alone is a stressor)?

 There are no other health issues going on ?

Not really that stressed, but having HSV is indeed a real stressor, I guess. As far as I know, I don't have any other health issue... I'm in a very good shape.

 

7 hours ago, IcantThinkofaName said:

How hard are your workouts? The last few Obs I had were after very intense resistance/weight workouts, and I was completely exhausted after...combined with a night of bad or little sleep.

I workout about 5 days a week. I do bodyweight workouts for the upper body, and one heavy leg workout once a week (Heavy squat triples+Romanian deadlifts, if you know what that is...). It is indeed a pretty intense workout and I'm stiff AF for 3~4 days after that. On sundays, I do a very intense interval training on stairs. 

What you're pointing out here about working out is very interesting. I had a one and a half month period with no outbreaks last summer and I did not work at that time... Could sport be the biggest trigger for me? That would really, really suck because I'm pretty much addicted to exercising.

7 hours ago, IcantThinkofaName said:

Hang in there. I was told after the 6 yr mark, HSV becomes a non issue in your body. ( thats what one of my Drs told me, so  not sure how accurate that is either, but I guess it gives me 4.5 years of hope)

6 years :noway: I'll probably be bald and a one of the top monks out there by that time :joy:

 

4 hours ago, StayingUpbeat said:

If you are taking daily Valacyclovir, and still have frequent visible lesions, a competent dermatologist would prescribe something called Foscarnet.  It is unfortunately an injection and (I believe) it must be administered weekly at an injection center or hospital.  However, the combination of weekly foscarnet and daily valacyclovir would almost certainly eliminate your visible outbreaks.

Does that mean I'd have to spend a day per week at the hospital to get rid of that damn virus? This is scary, and not a very nice thing to hear :disagree:

 

4 hours ago, StayingUpbeat said:

Next, there are members on this site who have been able to obtain a drug called Amenalief from Japan.  It's a recently approved (in Japan) member of a class of HSV drugs called Helicase Primase Inhibitors (HPI): https://www.mimaki-family-japan.com/item/detail?item_prefix=TF&item_code=705711&item_branch=001 It is bio-similar to a drug called Pritelivir which is currently in clinical trials in the US for HSV in the immuno-compromised (i.e. organ transplants, HIV).  A member in this thread talks specifically about his experience taking 100mg/day to help with outbreaks.  It unfortunately sounds very expensive to take suppressively. 

That drug sounds very promising, and could probably save many of us from our burden, but it surely is too expensive to be considered at the moment... :disappointed:

4 hours ago, StayingUpbeat said:

Finally, there was recently a small successful clinical trial on the use of topical squaric acid dibutylester (SADBE) for the control of HSV.  If your doctor is comfortable trying alternate therapies to control your outbreaks topical SADBE is an FDA approved cream that you could discuss trying.  My recommendation would be to bring this paper discussing the trial to your next doctor's visit.  It would be an off-label use but the cream is relatively benign.  It's most frequent use is clearing-up cutaneous warts on children.

I'll probably try that, but not sure this drug is either approved or available in France... Also, the paper does not mention HSV-2. Any other source mentioning the efficacy of such cream for stopping reccurent HSV-2  ?

 

Has any of the guys out here ever tried circumcision as a mean to stop reccurences? Most of the outbreaks I get are in the inside of the foreskin. Curious to hear if that worked out for some people.

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Dutchy

Hi! Valaciclovir did not work great for me. But acoclovir does. My docter told me that valaciclovir is used when having An ob. Aciclovir is for long term suppresion.. 

I feel like movement triggers ob,s

For me that is sex of cycling. So i deffenitly feel sports van trigger this for you.

I use applecidervinigair while having An ob and that works wonders for me.

Im on suppressive meds but want to try olive leaf extract and fulvic acid....

Dont become a monk please;)

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MyOhMy2018
4 hours ago, Dutchy said:

Hi! Valaciclovir did not work great for me. But acoclovir does. My docter told me that valaciclovir is used when having An ob. Aciclovir is for long term suppresion.. 

This is actually a very, very interesting statement. Now that I remember, the only time I managed to suppress the virus for more than a month was when a doctor mistakenly prescribed me Acyclovir instead of valacyclovir. Surprisingly, it worked pretty well. I used to take like 400 mg in the morning and it seemed to do the work. How much valacyclovir do you take each day? I'd like to know more about valacyclovir vs aciclovir as a way to suppress the virus. I always thought that valacyclovir was a stronger version of aciclovir

4 hours ago, Dutchy said:

I use applecidervinigair while having An ob and that works wonders for me.

Im on suppressive meds but want to try olive leaf extract and fulvic acid....

How do you use Apple cider vinegar ? You just apply it with some cotton directly on your skin ? I'll also have to try leaf extract and fulvic acid. 

 

Thank you for sharing your stories and what works for you, that's very nice of you all!

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Dutchy

I take 400 mg twice a Day. You can also take 4x200... 

I was really surprised that IT worked after valaciclovir. Hope IT does for you too.

Just like you said. Apply with some cotton. And leave it there for a while. Sometimes i use ladiesstuff for periods. 

Good luck with trying new things!

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MyOhMy2018
15 minutes ago, Dutchy said:

I was really surprised that IT worked after valaciclovir. Hope IT does for you too

You really had no luck on valacyclovir too? Do you still have OBs on Aciclovir

 

16 minutes ago, Dutchy said:

Apply with some cotton. And leave it there for a while.

Apple cider vinegar burns the skin a little, doesn't it? 

 

Thanks again for the advices ! :)

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Dutchy
1 hour ago, MyOhMy2018 said:

You really had no luck on valacyclovir too? Do you still have OBs on Aciclovir

 

Apple cider vinegar burns the skin a little, doesn't it? 

 

Thanks again for the advices ! :)

Well i use it dit two moths now and ob,s dissapeard. Twice i felt a Little tingle but if it was An ob to start it went away very quick. 

Applecidervinigair does burn a Little bit but not irritating. I feel like when it burns IT does its work ;)

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MyOhMy2018
16 hours ago, Dutchy said:

Well i use it dit two moths now and ob,s dissapeard. Twice i felt a Little tingle but if it was An ob to start it went away very quick. 

May I ask how long you have been positive to HSV-2? Because it's been a year for me and symptoms should have already lessened according to a lot of people, but it's not the case unfortunately

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Dutchy

Hi! I was diagnosed one year and four months ago. Not a major first outbreak. Than 2,5 months later my second. Then faster a Little ob. Then is was without for almost 7 months. I really felt that was how i could handle things. Then in June i started having ob after ob. It was a very hot summer here in Holland. Also started a new relationship so more frequent sexual Activity. Not sure what coused it but those things i did feel like could trigger it. 

Started acyclivir two months ago. That helps a great deal. But really dont want to Stay on Anti virals. Willing to try natural stuff but also right now feeling very happy not worrying all the time. Need to discuss again with my doctor soon.

 

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IcantThinkofaName

Yes, try acyclovir if you haven't, I thought you had tried that first !!

And as for as your workouts,:

On 9/23/2018 at 4:05 AM, MyOhMy2018 said:

I workout about 5 days a week. I do bodyweight workouts for the upper body, and one heavy leg workout once a week (Heavy squat triples+Romanian deadlifts, if you know what that is...). It is indeed a pretty intense workout and I'm stiff AF for 3~4 days after that. On sundays, I do a very intense interval training on stairs. 

What you're pointing out here about working out is very interesting. I had a one and a half month period with no outbreaks last summer and I did not work at that time... Could sport be the biggest trigger for me? That would really, really suck because I'm pretty much addicted to exercising.

Yes, thats a heavy duty workout. I do those too-  Rom. deadlifts and many other things. Can you switch to 3 days week? Do full body on those days then Give your body a  rest day to repair? On the days without weights do light cardio? Your body needs time off to repair the damage from working out. Maybe take it down a notch, Listen to your body- its upset about something. If you are stiff for 3-4 days, you might need a better workout recovery plan??

INtense exercise does affect/lowers  the immune system.

I have triggered several outbreaks from hard workouts. I am having back to back Outbreaks right now  myself:(

Up the L glutamine supplements.. like 5 grams maybe more- I don't know your height and weight-.. I am certain you are doing a nice protein meal after workout too? Maybe something to lower inflammation. 

Are you taking any body building supplements? there could be something in those to trigger Outbreaks too...like L-arginine

But I completely understand , Exercise is all I have left in life that makes me happy. 

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Kurdt01

and just FYI, the available AV's (and I've tried all three) do nothing for me at any dosage when I take them, however a specialist did swab an OB and in a culture it responded to all 3...so I don't have a resistant strain, but they don't help when I take them....what does that mean? 

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friendlyboy
On 12/3/2018 at 2:05 PM, Kurdt01 said:

and just FYI, the available AV's (and I've tried all three) do nothing for me at any dosage when I take them, however a specialist did swab an OB and in a culture it responded to all 3...so I don't have a resistant strain, but they don't help when I take them....what does that mean? 

None of the available AV's is very good at suppressing the virus, so it means that your immune system hasn't mounted a good enough immune response against the virus yet.

The usual advise is to make sure you have appropriate levels of vitamin D and sleep well and long enough.

If you got the infection recently, you also need patience as it will take a while for your immune system to learn. In my case it took around 1.5 years for valacyclovir to become effective at the usual suppressive dose.

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