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Research

is there a research group one could participate with, study and analyze past, present and future findidngs/options?

i have been outbreak free for years and am almost certain i recently had my first outbreak in january - and they won't stop.

i think the following has provoked the virus, as well as disable the latency stage:

a.  i took a strong proton pump inhibitor in january for my gerd - within a week i had a broken tail bone and rash of blisters across the bottom of my back.  (the pamphelt said it causes shingles in some - and recently there has been an article confirming that proton pump inhibitors do cause osteoporosis)

b.  i started taking high doses of calcium at the same time for weak bones (i read an article that calcium in cells provides a higher oxygen level than normal and doesn't not allow the virus to live)

there seems to be some corrulation, no?

a. did my lack of calcium (whether by intake or  body drawing it out of the bones to suppress my acidic stomach) not only provoke osteoporosis, but enabled the virus to hide in latency?
b. does my broken tail bone + the high intake of calcium provide an unfavorable atomosphere for the virus which is causing an outbreak every 3 weeks?
c. can i be somehow burning out the virus naturally because it can't hide now?

has this or anything like this happened to anyone else?

thanks for your input.

yogi
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101028 tn?1419603004
you can check out www.clinicaltrials.gov to see if any herpes studies are going on near you. currently they are testing a new  helicase primase inhibitor.

I really have no  info about either medication you have recently started taking.  I'd recommend paying to post to Terri warren, our herpes expert here on medhelp.

how are you currently treating your herpes?

grace
Helpful - 0
Avatar universal
hi grace, thanks for your post.

i'm just letting the episodes ride out as i'm not in a relationship at the moment and haven't been for years.  i want my immune system to burn out the virus instead of drugs.  it takes about 7-10 from start to finish.  

i've noticed the frequency is consistant, but the severity is decreasing, which i find interesting.  it's always in the same 4 locations as well (not at the same time)

i was taking lysine on and off.   oddly enough, when i stopped taking it is when the episodes start - but i don't know if there's any connection.

i'm going to my derm next week to see if he knows of an expert here in NYC, but as always, he never knows anything because research is taking too long (whether because of lack of funding or not) and not focusing in the right direction.  

i wish there were support research groups here, but there are none.

i'd love to find a group of others to meet and study this problem.

thanks
Helpful - 0
101028 tn?1419603004
there is absolutely nothing to "toughing it out" and hoping your body burns out the virus. it just doesn't work that way. why suffer when you can be on daily suppressive therapy and stop having symptoms for the most part?  the herpes medications do not effect the body's immune system. also this isn't a newly acquired infection for you, your body has already gotten all the immune response it is going to get. make sense?

Controlling your gerd and osteoporosis is important. control the herpes part with medication so you aren't having to deal with this so much. even if you aren't currently sexually active, who has time to put up with a week of burning/pain/itching every few weeks?  

unfortunately both herpes ny support groups broke up a few years ago :(

grace
Helpful - 0
Avatar universal
no, i don't think it makes sense.  taking a pill everyday exposing my body to chemicals and irritating my stomach even further, as i cannot take any medication without stomach upset, makes no sense to me.  

i also don't believe in supporting these drug companies so that they never want to come up with a cure.  there's no money in finding a cure. the virus has been around since the beginning of time and our immune systems have dealt with it before the antivirals were discovered in the 80's.  

however i do understand how some people do need this drug.  each person has different immune responses and you can't generalize.

i'm not a scientist but have been studying the intricacies of this virus for years and years and i think you're wrong - at least for my case.  the body does increase it's immune response the longer you fight the virus naturally.  

my ex who took these antivirals daily told me that when he doesn't take them he has a huge outbreak immediately -  is it because these drugs prevent one from building up enough antibodies?   i think these drugs just make you dependant on them for a lifetime.

when i tested for it 6 years ago i already had a very 'high' number of antibodies without ever having had an outbreak.  my dr told me that this high # meant i already had the virus for quite some time and the # of antibodies will increase even further in time.  

now that the virus has finally been 'awakened' i'm seeing a pattern.  the frequeny remains high but outbreaks are already decreasing in severity just within these last 6 months of symptoms.  

and i do believe that the body can burn out a virus - the common cold is a virus and we can burn that out, why not this?

and yes i understand the hidden pattern of the herpes virus, however, some people have managed to eradicate it - somehow.  we just have to figure out how to keep the virus 'awake' so that every 'virus' can be destroyed without being able to hide back into latentcy - just like a cold virus

and these anti virals are a false sense of security for uninfected people - my ex took it every day and never had an outbreak during the year time we were together but STILL MANAGED to expose me.

and yes i know on the drug pamphlet it does say in small print that 'shedding' still can occur while taking the antivirals
Helpful - 0
101028 tn?1419603004
I've had hsv2 for 25 years now. the first year, I had 2 ob's that at the time I didn't even know were ob's. A little over a year later, I had the ob from hell. From that point forward I had ob's all the time. At one point I was having 20 ob's a year.  Suppressive therapy took them down to 2 a year on average.  Every time I'd stop suppressive therapy ( for multiple reasons ) no matter if I stayed off of it for a few weeks or a few months, I'd go right back to my previous ob pattern.  Even a few years ago when I went off suppressive therapy for 6 months to participate in a research study, I had 7 ob's in 6 months.  Most of my friends who have hsv2 have less ob's than the first few years but it still varies from year to year. Some years they have 2 or 3 and others it's 6 or 8.  it really varies.  If indeed the medications you are using are triggering the virus more than it usually would be, that would explain the increase in ob's. They don't study all medications for their effects on herpes. You can file paper work for the  medications you are on with your report of an increase in hsv2 recurrences and when they get a certain # of reports on things like that ( like the shingles association ) then they add it to the post approval reported side effects list on the official prescribing info. Just contact the drug manufacturers and they can provide you with the proper forms.

we know from a recent study that shedding of the virus remains the same from year 1 on to over 20 years of infection. This is in folks who normally took suppressive therapy, folks who just used episodic therapy and in folks who never treat their herpes.  

The herpes antivirals disrupt the viral replication process. acyclovir/valtrex interferes with tk production so that the virus can't properly complete its life cycle to continue replicating when active.  the virus still replicates while on daily suppressive therapy. it can still replicate enough to be detected on the skins surface however it reduces this by 80% on average in folks. it really does help to reduce the odds of a partner being exposed to active herpes virus but it isn't 100%.  

it's totally your choice how to treat your herpes. if you don't want to treat it that's fine but just wanted to make sure that you understood that your thought process was a bit flawed so that you understand how it all works.  

grace
Helpful - 0
Avatar universal
my thought process is not 'flawed'.  apparently you clearly just have a different opinion or didn't understand my post - however your tone is definitely 'flawed'.  
Helpful - 0
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