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Research Update


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Posted

So I haven't been here in a while for various reasons, mostly medical, but I found an interesting article today about the 12 month follow up results from a couple of the companies working on therapeutic vaccines (vaccines for people who already carry the virus). Agenus has shown a 75% drop in viral load and a heightened immune response among the 80 patients enrolled in its phase 2 trial the past two years. Further data will be released later this year, and hopefully they will continue on to Phase 3 trials which will likely take place at various clinics nationwide. This is a big step forward. I caution against relying on this to save us, and encourage you all to continue living your lives, but know that there are people working diligently to resolve this condition and give us back some semblance of a normal life. You can read the report at http://medcitynews.com/2014/07/race-tight-genital-herpes-vaccine-agenus-genocea-announce-positive-data/

Posted

Thank you so much This is Me Now.

 

I know we should not stop our lives for this virus and I agree for those of you who display genital and oral herpes typically. For me, with disseminated herpes, a cure is a very real hope that I cling to. I have had non-stop symptoms for 6 months even with antivirals with no end in sight.

 

A cure or a new drug for me would change the way I live my life. With the greater understanding of myself that herpes gave me; I need the physical health to act upon this wisdom.

 

I cannot give up hope. My fate cannot be this.

 

 

Posted

There is a saying:

 

Live in Hope, Die in Despair ....

 

I get it, we all would love a cure, but if I had lived in "hope" for the last 35 years I'd be one heck of a mess by now. I've seen a lot of promising research but in a crappy economy we don't get much funding because this virus is non-life-threatening. That is the reality of Herpes research. So many of these things will be stop-and-go ... and if you are relying on them to bring you peace and happiness you will be spinning your wheels instead of living life.

 

@whitedaisies ...

 

I would go to an infectious disease Dr or maybe an endocrinologist to see if you can do something else to help your immune system. Sounds like something is out of balance and allowing the virus to keep the upper hand ... by now you should be gaining control of it. So I wonder if you have either a food allergy or a hormonal imbalance that needs addressing. You are certainly more likely to have a livable result with that now, and if the "cure" eventually arrives, at least you will hopefully be in a better place in the meantime ;)

 

(((HUGS)))

Posted

This sounds wonderful, but I agree with Dancer. I'm not getting my hopes up. Even if it gets approved, it will be years before we see it on the shelves.

Posted

I do believe a cure will be found someday. I also accept the fact that it may not be during my lifetime. After 27 years its not a big deal to me anymore. I've lived with it for well over half my life now. If I live to be 100 and there is still no cure, oh well, I'm still going to be alright.

Posted

Look, Dancer, I understand that in 35 years you've given up on the idea of vaccines and cures. That's okay, but I don't think it's helpful to constantly remind others of this. Hope is a very powerful tool for people. It is a motivator and it can keep people moving in the right direction. Hope is the reason I'm still alive today, so please do not dismiss it because of your anecdotal personal experience.

 

I've been in constant contact with Drs. Anna Wald, MD, MPH and Keith Jerome, MD, at the University of Washington for the last three months. A vaccine that reduces viral load by 75% in 80 patients studied using a less than optimal dose for safety purposes is nothing to scoff at. There are between 12-15 research labs actively working on synthesizing vaccines and working to cure the virus. Dr. Wald believes a functional vaccine will be marketed within 3-5 years and a cure will be available within 10. I believe her because she's the expert.

 

There are half a dozen compounds in preclinical stages and several more in both early clinical and moving into late clinical stages of testing. This vaccine in particular was completing safety trials (Phase 2), and the 12 month follow up data has shown it to be very effective at reducing viral load. Science has found that if viral load can be kept below 10,000 copies of the virus then it becomes non-communicable. It is a very big step forward to be able to reduce viral load. The proof exists in the HIV+ community in that viral load can be reduced so low that you can have HIV- children and actually test negative for the virus in blood samples. Viral load is very important. Moving into Phase 3 NIH trials means testing various dosing regimens to determine what the optimal application of the compound is. I think everyone here can agree that getting a booster shot every six months is a huge improvement to quality of life over having to take a pill daily and still worry about outbreaks.

 

As the economy improves funding improves, but that isn't the only reason funding has been low for this. The other is that vaccines for anything are frankly not all that profitable for pharma. They have to be induced through government grants to do the research and market the product, but it helps when Bill Gates begins linking the cure for HSV with the cure for HIV on a fundamental level. That's where we are now. Curing herpes will help reduce worldwide HIV infection and so research funding for HSV is increasing. Thanks to doctors like Anna Wald and Keith Jerome who are outstanding researchers and fundraisers.

 

I refuse to believe I will never be rid of this virus, no matter how benign it ultimately is.

Posted

Thank u for ur post thisismenow. For some this virus is benign and for others they get constant outbreaks and pain and it is affecting more than one part of the body....makes it difficult not to have hope when body is shutting down. But I see where dancer is coming from...hope can't prevent u from living. Because u could be standing still waiting forever. There needs to be a delicate balance. It's tricky.

Posted

Thank you @whitedaisies for stating what I've been trying to get across

 

But I see where dancer is coming from...hope can't prevent u from living. Because u could be standing still waiting forever.

 

This is the point - and I see people on here who decide to "wait" to have a relationship until there is a cure. If I had done that 35 yrs ago, I'd be a very frustrated spinster right now....

 

Yes, hope is good. But many obsessively search for a "cure" rather than getting out and living their lives, and THAT is what I am trying to prevent. Sure, one day there will be a cure, just as one day there will be one for all Cancers. Believe me, the second there is news about any vaccines/cures, it will be all over this board ;)

 

Adrial wrote a great blog on "Giving Up Hope" ... perhaps this will help you to see where we are coming from here:

 

http://herpeslife.com/the-key-to-being-happy-with-herpes-give-up-hope/#more-801

 

Dr. Peter Ubel is one of the authors of the study. He says, “We’re not saying hope is a bad thing. What we’re pointing out is that there can be a dark side of hope. It can cause people to put their lives on hold. Instead of moving on and trying to make the best of circumstances, you can think, ‘my circumstances are going to change eventually — no point in dealing with these circumstances.’”

 

(((HUGS)))

 

 

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