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slightly defeated

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I was diagnosed in mid March with H. I started taking the suppressant right away and kept taking it. I decided about a week and a half ago to stop taking it and see what happens. Well I had my second outbreak. I was so upset that the moment I stopped taking the medicine I broke out again. HOWEVER, this time I only had what I believe one sore. So I took the medicine again and have been everyday. The outbreak only lasted a few days though. So that made me happy. My question is... (and I know everyone is different) who takes the suppressant and who doesn't. Likewise if you don't take the suppressant how many outbreaks have you had in the first year and how long did they last?

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Given you are in your first year, it's normal to have several OB's and if the second OB stopped as soon as you went on the supressants, you are well on your way. Odds are the body just hasn't totally got it under control (it can take up to a year) so when you went cold turkey it was too much for the system to deal with. I'm guessing you will manage it soon without the drugs, but I would keep them on hand...as soon as you feel any symptoms, pop a pill or two and with luck it will knock it right down.

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My two cents - I've had it for over 5 years. I take no suppressive therapy and I break out once a year, if that, and it's barely noticeable. My outbreaks stopped being painful after the first few years. H very commonly gets milder as time goes on, so you have every reason to be hopeful.

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Is it normal to have an OB end and another begin almost instantly? I feel like I've had a non stop OB since April when I was diagnosed. Valacyclovir doesn't seem to be helping much. I've been immunosuppressed lately from surgeries and having to recover from serious trauma, and I've been under a lot of stress because I'm on unpaid leave from work.


Any thoughts?

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Herpes LOVES stress and it sounds like you have had plenty of that (physical and emotional) ... so it's not surprising ...


Have you tried L-Lysine? That works for some. Also, check out this info on foods with Argenine (which can cause more OB's)






and look into any immune function supplements ( I use a Mushroom-based one that really helps *my* immune system when I'm run down) like New Chapter's Life Immunity ... and look up healing diets in general. Get off sugars and simple carbs.


All this will help ALL your healing ... ;)

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I actually read some recent research that disproves the links between lysine and arginine. It seems they're more psychosomatic than physical, but whatever works for people. I take zinc daily, which is proven to strengthen the immune system and positively impact HSV infection.


In all honesty, I'm not going to be satisfied until there is a vaccine that ends shedding and outbreaks. Nothing is going to make me happy until that happens.


Has there ever been an effort through this site to perform outreach to major pharmaceutical companies, the FDA, NIH, and venture capitalists with the money to invest in research? What about contacting members of Congress? It seems to me that there is a huge void in that regard globally. I don't have the nerve to out myself the way that would require, but if there is someone around here who has the nerve and is already outspoken about this that would be a good way to make an impact.

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The medical world LOVED to disprove supplements, and while I don't generally push supplements, I DO believe that every "body" will have things that it processes better than others, things it stores better than others (for good AND bad, as in toxins), and excretes better than others. So depending on the number of participants in a study the data may be very skewed UNLESS they are looking at all those factors (ie, taking blood and analyzing the amount of Lysine and Argenine in each person before they start the program as well as their "normal" diet ... which I highly doubt they do... that's a whole lot of data on top of what they are looking at). We like to *think* we know a whole lot about how the human body works, but I can tell you, what we know is barely the tip of the iceberg... so as you say, if it works, I say use it. It certainly doesn't hurt anyone to try it ;)


Nothing is going to make me happy until that happens.


Well, that's your choice to remain unhappy until then. And that's ok... we all have that choice ;) I for one refuse to not go out and live life to the fullest ... and trust that if a H- person comes into my life and accepts me as I am, that we will enjoy each day as it comes, I will do everything I can to protect them, and I won't let it affect my happiness. I could get killed crossing the road to my office (I literally have to play chicken with the traffic most days) tomorrow. So allowing H to run my life is not an option for me.


Has there ever been an effort through this site to perform outreach to major pharmaceutical companies, the FDA, NIH, and venture capitalists with the money to invest in research? What about contacting members of Congress?


There's a LOT going on behind the scenes.


Adrial consults with Dr. Peter Leone who is a leading H specialist to find out what is happening in the medical world including anything we might be able to contribute to.



He's also just did a panel at a "Sex-positive" convention for sex therapists/educators/etc



What you are asking for would be a MAMMOTH undertaking that neither Adrial nor I have the time, connections, or resources for YET. Besides creating something to help people to understand and cope with H, Adrials Home Study course will eventually be funding the rebuilding of this site (because the server can't handle the number of hits we are getting) and then we will be able to start to use the momentum we are creating here (which will give us credibility) to work with those organizations and to put pressure on them to do more for the H community/research.


I started my personal blog as an effort to reach even more people (and direct them here). It is something *I* can do to help others, even if it's not as "big" as starting a campaign to get the Big Pharma to take us seriously.... but my feeling is that the more people who we can get to be comfortable enough to speak out publicly (meaning they come out and are a voice) the more attention we will get.... just as the HIV community is rising up more every day to the point that people are better informed about it so that those who are "out" are no longer considered lepers and shunned by society in most places. To make a change, we must EDUCATE .... that will bring more results from people like me right now. If I approached the FDA right now they'd never let me in the front door. If I gain credibility as a Blogger and Advocate, they *might* at least listen to me once. ;)


I don't have the nerve to out myself the way that would require


There is a saying... "You must be the change that you wish to see". Last Fall, I took that to heart and came out. I am but one person .... my impact may not be great, but at least I am doing *something*. But like a mosquito (which alone is an annoyance, but en mass, can create plenty of noise and discomfort) if we can eventually get enough of us to stand up and refuse to be "closeted" by the stigma, we can produce enough noise and discomfort to get the attention of those who have the ability to reserch and fund the cure you so desperately want.


You want to see a change? Get involved. Refuse to allow a virus to run your life. Step up and be part of the movement.


If that is too much for you, ask Adrial what you can do to help him in one of his projects. He really needs an army of people to carry out the tasks and projects he has lined up. Herry is working on some booklets for him. I'm helping at the H(Opp) weekend and I do what I can here to hold down the fort so he can finish the Home Study course and organize that weekend and meet with the people he's already made contacts with. There are other folks who have roles too.


One person cannot make a revolution. A small group can make a ripple. But to make the changes we wish to see, we need to have enough people speaking up and saying "We won't allow you to ignore us any more" to get heard and taken seriously.


Peace out :)

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