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Medical Forum / Diseases and Disorders / Herpes / October 2005

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frequent outbreaks while on supressives

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kdhardy@gmail.com - 21 Oct 2005 02:37 GMT
I had my first genital herpes outbreak a few months ago (mid-july) and
my doctor put me on suppressive therapy right away (acyclovir 400mg
x2/day). Even so- I had another outbreak 3 weeks later, and every 1-3
weeks since then.

I have HSV-1, so according to the literature I should be even less
likely to have frequent outbreaks, and the suppressive dose should make
it less likely... but here I am. I'm also taking lysine 1000mg x2/day
and decided to give red marine algae a shot as well.

So I'm wondering- does anyone else have really frequent outbreaks while
on suppressives?
Has anyone had any luck with switching medications? It doesn't really
make sense to me that it would help since Valtrex is just an extended
pro-drug of acyclovir... but you never know.

And have other people had a lot of outbreaks in the first few months
and then had them taper off (please say yes!)?
It does seem like they're getting less severe- much smaller breaks in
the skin... so I guess that's a good sign.

Anyway- any input would be greatly appreciated.
Grant - 21 Oct 2005 03:11 GMT
Hi,

I have genital type 1.  The first year or so was hell.  I had frequent outbreaks
and they were rather painful.  After the second year, I still had frequent
outbreaks but they didn't hurt as much.

20 years later and I can tell you that I haven't had an outbreak in so long, I
can't remember when it was.  I never take the meds.

Take a look at other triggers for outbreaks such as stress, food, other
medications, etc.

I hope you find some relief soon.  :)

ar

>I had my first genital herpes outbreak a few months ago (mid-july) and
>my doctor put me on suppressive therapy right away (acyclovir 400mg
[quoted text clipped - 18 lines]
>
>Anyway- any input would be greatly appreciated.
M2slo2cht@nospam.invalid - 21 Oct 2005 04:51 GMT
kdhardy writes:
>have other people had a lot of outbreaks in the first few months
>and then had them taper off (please say yes!)?

(Happy to oblige) Yes
In fact, that's been the classic routine with Herp since long before
drugs were invented. It can be pretty tough at first, for even as long
as a year or two. But for most people, it fades after that to only an
outbreak or two per year or in many cases no more outbreaks at all.
I'd say stick with the Acyclovir (or Valtrex, whichever) for awhile
yet. If you're taking them for suppression, you might want to up the
dose a little (check with your doc) and if episodically, maybe upping
the dose as well as starting earlier in the outbreak. Early is key to
their effectiveness.
That's in addition to diet and exercise and all the healthy stuff that
can strengthen your immune system. Ar and them can fill you in on that
stuff.

M2
dianna - 21 Oct 2005 05:21 GMT
Thanks for the replies. Good to have it reinforced that it should get
better with time.

Unfortunately the doctor who diagnosed me moved away a couple weeks
later... so I'm not all that excited to have to find a new one that I
can stand.

I don't think there's a whole lot more I can do on the diet and
exercise level though- I run and/or cross-train about 25-30 miles/week
and lift weights a few hours/week and that's about as much as I can do
right now. I'm a vegetarian and I also stay away from eggs and dairy
except on special occasions- get plenty of fruits and vegetables, take
my vitamins, try to avoid caffeine-but am anticipating a relapse with
the crazy schedule that I have right now.
I guess I should try eliminating chocolate and peanuts and nuts and
those other common triggers though :(

I guess stress is probably my major problem. That's not so easy to just
cut out though.
Grant - 21 Oct 2005 12:45 GMT
Hi Dianna,

I'm also a vegetarian.  Wish I had your work-out ability, though!  

Check your vitamins.  They may contain Arginine.  That may or may not encourage
the herpes virus.

Try cutting out the foods for a few weeks.  If you don't see an improvement,
then don't worry about it and put the foods back in.

Stress??  Yuck.  Try meditation.  Or some other stress relieving activity.  I
think exercise should qualify for that, though.

ar

>Thanks for the replies. Good to have it reinforced that it should get
>better with time.
[quoted text clipped - 15 lines]
>I guess stress is probably my major problem. That's not so easy to just
>cut out though.
M2slo2cht@nospam.invalid - 21 Oct 2005 12:55 GMT
>Unfortunately the doctor who diagnosed me moved away

Granted, you'll need a doc to renew your prescription every year or
so. But very few of us depend on a doc for help beyond that. You'll
soon become more of an expert on Herp than most doctors. Very few know
more than the average layman. It's scary.

>I don't think there's a whole lot more I can do on the diet and
>exercise level though

Just keep it up then. You're ahead of the game.

>try to avoid caffeine

I just woke up and that reminds me. I haven't made coffee yet.
Back in a minute.....
<a few minutes later>
..... ok, I'm back.
You'll find that "triggers" are very individualized. A trigger for
some people won't be a trigger for everyone. Same with remedies. Some
people swear by L-Lysine. For others, it doesn't help (and for a few,
it seems to make matters worse). So you'll eventually have to figure
out which ones affect you and which ones don't. That can take quite
awhile of trial and error on your part. The good news is, you might
NOT have to give up some favorite things that people are telling you
about.

>-but am anticipating a relapse with
>the crazy schedule that I have right now.

I'm really sorry to hear that. I know it's tough right now. But know
it'll eventually get better. Someday you'll look back to see this as
just another bump in the road.

>I guess I should try eliminating chocolate and peanuts and nuts and
>those other common triggers though :(

Yep. For now. But maybe the frown won't be permanent. I hope not. But
yes, you'll need to keep track of what you eat and compare it to
outbreaks to see if there's a correllation. Get yourself a callendar
specifically for that purpose. Keep track. You'll get a better handle
on it that way.

>I guess stress is probably my major problem. That's not so easy to just
>cut out though.

Tell me about it. Especially if it's part of making a living. But who
knows, stress may not be a trigger for you. Try to keep track of it on
your H-calendar along with the other possible triggers.

Looking back at your original post, we left a few questions
unanswered. I'll give that a shot
1. Three times a day (instead of two) is not an unusual dose for
Acyclovir. When you find a new doc, ask him about it. There may be a
reason for you individually that your original doc prescribed only
two.
2. I've heard conflicting reports about L-Lysine dosage. Some say
higher is better, some say higher isn't healthy. And like I mentioned,
for a few, Lysine seems more like a trigger.
3. Let us know your experience with Marine Algae. There aren't many
credible sources for that info. The only poster that's talked about it
much here was a spammer a few years ago. He swore by it but, of
course, he was selling the stuff.
4. Yes, a few people experience outbreaks even on suppression. The
drugs work for most people, especially once the dosage is right, but
they're not for everybody. If you're having outbreaks while on
suppression, I'd be willing to bet they'd be more severe and last
longer without drugs. Before you give up on them, I'd try a higher
dose. I don't see the point in switching medications. You're right.
Valtrex becomes Acyclovir to fight the virus. The once per day dosing
of Valtrex is the selling point I think. If money is an object though,
and you can remember to take a pill 5 times a day, Acyclovir should
work just as well.
5. Welcome to the group. Let us hear from you again with questions,
answers, rants, or whatever.

M2
Angela S. - 21 Oct 2005 17:07 GMT
Hi kd ~

> Thanks for the replies. Good to have it reinforced that it should get
> better with time.

Oh definitely!! ;-)

> Unfortunately the doctor who diagnosed me moved away a couple weeks
> later... so I'm not all that excited to have to find a new one that I
> can stand.

Where are you located if you don't mind my asking. You might be able to find
a good herpes aware doc via this page:
http://www.yoshi2me.com/herpes-doctors.html

You might also see if there is an H Pal you can contact that might be able
to point you to a good herpes aware doc:
http://www.yoshi2me.com/herpes-h-pals.html

The only other thing I can think of is perhaps there is a herpes support
group located near you that has a medical advsior you can talk with about
all of this:
http://www.yoshi2me.com/herpes-support.html

I know for a fact that all the HELP groups have to have a medical advisor
because I faciliate the Omaha HELP support group. In any case these are just
a few options I wanted to share with you so you don't feel as though you
have no way around getting to the bottom of what is happening to you.

> I don't think there's a whole lot more I can do on the diet and
> exercise level though- I run and/or cross-train about 25-30 miles/week
[quoted text clipped - 5 lines]
> I guess I should try eliminating chocolate and peanuts and nuts and
> those other common triggers though :(

I want you to pat yourself on the back for trying all these things. But
whatever you do ~ please do not beat yourself up if and when none of what
you are doing does not work to illiminate the outbreaks. Stress may very
well be the only thing OR perhaps it's something completely different going
on down there.. ya know?

The reason why I say don't beat yourself up over it if none of those things
work is because (like you) I tried just about everything and monitorred
everything that I was trying (including L-Lysine) very closely. Nothing
worked to make my frequent outbreaks stop.

So kudos for trying but don't beat yourself up if these things don't work
out.

> I guess stress is probably my major problem. That's not so easy to just
> cut out though.

Hang in there and keep us posted, ok?

Angela ;-)

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dianna - 21 Oct 2005 23:39 GMT
Thanks for those links. You're right, I do need to find a new doctor
and talk about dosing etc. I think it's great that you have those
Herpes-aware Docs list and the H-Pals because I think half the reason
I've been avoiding going to a doc to talk about it is the one who
diagnosed me told me that you can't get HSV-2 in your mouth and I
realized that I already knew more than she did.

The other frustration I have with western medicine doctors is that most
of them know absolutely nothing about alternative therapies or
nutritional influences. I think they get about 4hrs of nutritional
training throughout their entire education. Pretty weak.

And thanks Angela and everyone else for the well-wishes.
Angela S. - 21 Oct 2005 16:59 GMT
Hi kd ~

>I had my first genital herpes outbreak a few months ago (mid-july) and
> my doctor put me on suppressive therapy right away (acyclovir 400mg
> x2/day). Even so- I had another outbreak 3 weeks later, and every 1-3
> weeks since then.

Just out of curiosity how were you tested? I think it's great that the doc
put you on suppression right away because that really does make things
easier for most people and future outbreaks less intense or frequent. So you
said you've had outbreaks since being put on suppression.. what does your
doctor say about this? Have you stopped to consider that you might have
something else going on down there besides herpes? You know.. not every itch
or irritation is going to always be a herpes outbreak so it's really good to
get all the other possibilities ruled out.

> I have HSV-1, so according to the literature I should be even less
> likely to have frequent outbreaks, and the suppressive dose should make
> it less likely... but here I am.

Which is what makes me wonder if there is something else going on besides
herpes - ie: yeast, bv, etc.? What does your doctor say? Have you thought
about talking with your doctor about all of this?

> I'm also taking lysine 1000mg x2/day
> and decided to give red marine algae a shot as well.

Well ~ good luck taking those things. I don't understand why you would since
you are on suppressive therapy with acyclovir. Perhaps introducing your body
to too many things at one time is a problem? Just so you know ~ there is
absolutely no indication within the scientific community (ie: clinical
studies, etc) that L-lysine or any of the so called "alternatives" do
anything for the herpes simplex virus.

But, since you are trying these things I would love your take on them as I
have set up a feedback page for both:
http://www.yoshi2me.com/comments/l-lysine.html
http://www.yoshi2me.com/comments/red-marine-algae.html

I also have a feedback page set up for acyclovir:
http://www.yoshi2me.com/comments/acyclovir.html

> So I'm wondering- does anyone else have really frequent outbreaks while
> on suppressives?

I have had genital herpes type-2 for 10 years and out of those ten years I
was on suppression for 2 years. I took 500 mg of Valtrex daily and that
worked like a charm for me. I had no trouble with outbreaks at all and
before I started it I was getting them every two to three weeks and
sometimes more often than that.

Another misconception people make is that often times they assume that once
they start suppressive therapy that they always have to stay on it and
that's not true at all.

> Has anyone had any luck with switching medications? It doesn't really
> make sense to me that it would help since Valtrex is just an extended
> pro-drug of acyclovir... but you never know.

What I don't understand is why you would be on Acyclovir, L-Lysine, and Red
Marine Algae all at the same time. There is absolutely no benefit to taking
L-Lysine or Red Marine Algae scientifically speaking of course. I have to
wonder what your doctor says about what's been happening to you and does the
doc know what you are doing? Ruling other conditions out is a good idea
because what you might be experiencing could be something other than herpes
outbreaks.

> And have other people had a lot of outbreaks in the first few months
> and then had them taper off (please say yes!)?

You can read my herpes biography here if you'd like:
http://www.yoshi2me.com/herpes-biography.html

I had GREAT success with suppressive therapy via Valtrex.

> It does seem like they're getting less severe- much smaller breaks in
> the skin... so I guess that's a good sign.
>
> Anyway- any input would be greatly appreciated.

Well I hope my post has been helpful to you. Feel free to contact me
privately any time!

Hang in there,

Angela ;-)

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Al - 21 Oct 2005 19:00 GMT
Hi,

I thought I'd add my two cents, for what ever its worth. I had used Valtrex
several times, and didn't see that much improvement personally. I wasn't on
Valtrex suppressive, just used it when I felt like a big outbreak was coming
on. There's a certain type of prodrome I get when a big one is coming and
this is throbbing in the tail bone. That's how I can gauge the severity.

I used 500-1500 mg of Lysine and saw minimal differences in limiting the
severity with this. Cutting out chocolate, peanuts and coffee during my
problematic periods was somewhat helpful. Avoiding stress was a large factor
in limiting outbreaks. I tried using things like Tea Tree Oil diluted and
put on the sores which helped a good deal. I never tried Red Marine Algae,
but would like to know how it works for you. I cannot find any stores to
sell it. Another thing to remember is that it is important to get enough
sleep, eat well and take vitamin supplements, as these keep the imune system
well and prevent an outbreak.

Al
dianna - 21 Oct 2005 23:17 GMT
> Hi kd ~
>
[quoted text clipped - 6 lines]
> or irritation is going to always be a herpes outbreak so it's really good to
> get all the other possibilities ruled out.

I was tested by PCR from a swab from my first outbreak. When I say
outbreaks I'm not talking about itching or irritation I'm talking about
lesions. Yes- I've considered it could be something else, but since
it's always in the same area, looks exactly the same and feels exactly
the same as the first outbreak... looks like a duck, quacks like a
duck...

> > I'm also taking lysine 1000mg x2/day
> > and decided to give red marine algae a shot as well.
>
> Well ~ good luck taking those things. I don't understand why you would since
> you are on suppressive therapy with acyclovir.

I tried adding the lysine because I was having so many outbreaks with
just the acyclovir- and read that some people have had benefit from it
and thought it would be good to give it a try especially since I'm
vegan and a lot of the high lysine foods are foods that I avoid. Lysine
is important in antibody production and other immune functions and I've
always had a rather poor immune system (though better since ditching
the animal products years back).
I've looked around and I know how fond you are of repeating the data
from suppression studies-- but I think the thing that you fail to
realize is that none of those percentages are 100%. Lucky for you you
fit into the group of people that it did work for- but there are other
people (like me) who find that these aren't wonderdrugs for us. So- we
start looking for other ways to help ourselves- which to me seems a lot
better than just giving up and doing nothing.
Yes, I know the value of clinical data (I'm a molecular biologist and
have worked in drug development). But I also know that a lot of the
time, just because you don't have clinical data to back something up it
doesn't mean there isn't something to it- it often just means there
isn't enough funding and/or interest in doing a well-designed study.
The reason why there have been big studies for acyclovir, valtrex is
that there are big pharmaceutical companies with the money to back
them.

Basically- I'm willing to try anything that won't adversely affect my
health because I find the outbreaks to be rather uncomfortable
physically and I'm quite fond of being able to have sex when I want to.
Angela S. - 22 Oct 2005 01:36 GMT
> Basically- I'm willing to try anything that won't adversely affect my
> health because I find the outbreaks to be rather uncomfortable
> physically and I'm quite fond of being able to have sex when I want to.

I know EXACTLY how you feel!!

I sure hope you find something that will work well for you.

Good Luck and keep us posted, ok?

Angela ;-)

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Grant - 22 Oct 2005 13:34 GMT
>I've looked around and I know how fond you are of repeating the data
>from suppression studies-- but I think the thing that you fail to
[quoted text clipped - 11 lines]
>that there are big pharmaceutical companies with the money to back
>them.

Well said, Dianna.  Thank you.

You said you have immune system trouble.  My immune system improved greatly - it
was out of balance - when I switched to a raw food diet.  I know you're vegan
and eat lots of fruit and veggies.  Do you eat a lot of soy?  Soy is not the
wonder food that many wanted us to believe it was.  I don't think soy would
affect your herpes but it might bother your immune system.  I'm reaching for
straws here because I want to find something that helps you.  Unfortunately, I
think the only thing that is going to help is time.

ar
dianna - 23 Oct 2005 07:12 GMT
Yeah, that's a good call with the soy. I was having stomach problems a
few months ago and my chiropractor/somewhat of an all around healer
tested my energy reaction toward some common allergens and said that
the soy was pissing off my body (paraphrasing here). So since then I've
tried to knock it down quite a bit, but it's definitely still present.
I think in a couple months when my schedule is more giving I'm going to
try a cleansing fast (master cleanser) to get out some excess toxins-
my mom did it almost two  years ago and felt great and hasn't gotten
sick in any form since then or had her usual allergies.
But I'm sure you're right, it'll just take some time. Fortunately this
is one thing in my life that I manage to stay fairly positive about- so
I'm just riding it out.
Grant - 23 Oct 2005 14:28 GMT
I'm glad you're staying positive, Dianna.

I do the master cleanse every once in awhile.  But I can't get past day two.
Generally, day three brings nausea when I drink the stuff.

I was severly allergic to soy so I have a certain disdain for it.  But I have
more disdain for people who believe that vegetarians must eat soy in order to be
healthy.  What a pain in the butt.  If I'm working somewhere where the only veg
food is soy, I get really pissed off.  I end up being stuck with a tomato slice
and some bread for a meal.  :)  (I often work in places where food is provided
for me)

ar

>Yeah, that's a good call with the soy. I was having stomach problems a
>few months ago and my chiropractor/somewhat of an all around healer
[quoted text clipped - 8 lines]
>is one thing in my life that I manage to stay fairly positive about- so
>I'm just riding it out.
Sergei - 24 Oct 2005 07:45 GMT
Dianna,

Unfortunately, drugs do not work all the time.  A senior executive with
Britain's biggest drugs company has admitted that most prescription
medicines do not work on most people who take them.

You may wish to consider taking an alternative treatment to improve
your immune system.  I specifically refer to Transfer Factors  - it
helped me and a friend of mine.

See www.healthandhabitat.com
All the best.  Sergei
 
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