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hereandnow

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Everything posted by hereandnow

  1. Hi Cece, I am so sorry. The initial pain and feelings of despair are really intense. There's no getting around it. Your body is learning how to fight this thing, and it will get better at it. Your mind is also learning how to deal with having something "forever". If you can, rest and just do every little thing you can to comfort your body and heart right now. Binge watch some netflix, take baths if you are able. Drink lots of calming teas. I do recommend some therapy if you're able to. There are lots of caring people who can help us come to terms with this and teach us how to cope. And being on here really helps too. You are absolutely not alone. -J
  2. I forgot to mention Purell Natural with essential oils. We have bottles all over the house for the baby. I now use it on my body outbreaks other than face and genitals. It is drying and antiseptic. Good stuff.
  3. Hi, My wife and I both have type 2. Mine is very aggressive. We got pregnant, and all of the fears and despair came roaring back instantly. I went too very appt with our ob. She did not care or treat us any differently. If anything I wanted her to be more concerned. She did not recommend a C section, and my wife started daily suppressive therapy in the 3rd trimester. She has had only a few minor outbreaks. When our son was born vaginally it was all I could do not to ask for a microscope to inspect him. He is completely healthy. I have to watch any areas and cover when I hold him or change him. But I make it work. You will too.
  4. Hi, yes it can. I have been taking all 3 antivirals constantly for 4 years. Up to 4000mg a day at times. I am bipolar, and noticed that my depression episodes came on faster and stronger than normal. I've had to completely remodel my psych regimen to deal with this virus and the medication. Do you have any history of depression yourself or your parents? If so this can bring it out. Please get help, and tell your pdoc about your infection. Many understand what this can do to our minds and hearts. Wishing you all the best.
  5. Hi all, It's been a long time since I visited here. But feel the need to tell a little of my battle since 2014 with what my Infectious Disease Dr. calls "the most aggressively virulent case of disseminated HSV2" he's ever treated. What does that mean? It means I have it everywhere. Literally there is no part of my body that has not had blisters in the last 48 months. Well, I contracted this strain of HSV2 from my wife who is asymptomatic Fall of 2014. As happens, it went undiagnosed and untreated for too long. After a week or two, I had 27 ulcers on and around my genitals. Cut ulcers, round ones, rectal, everywhere. At one point was taking 4 GRAMS of acyclovir per day and it did nothing. During the undiagnosed period, I spread the virus into my mouth, and orofacial nerve system. 4 months after my genital primary outbreak came the oral outbreak. The entire hard palate of my mouth and throat became a 2 inch ulcer. I could not eat soft foods without gargling with Lidocaine and codeine liquid first. This lasted 3 weeks. Again, antivirals were used (all 3, acyc, valacyc, famvir) to no effect. My eyes became involved, beard area, and every surface of my mouth. At one point along my gums I counted 37 tiny ulcers with a flashlight. It was, I thought, the end of my life. The depression that coincided (I am bipolar as well) was the blackest pit one can imagine. I saw 7 different doctors. I took a lot of narcotic pain relievers. Acupuncture, reiki, chinese herbalists, naturopaths, psychiatrists, ID, dermatology, you name it. They all could not believe at the time this was all HSV related. But it was. I knew it. We all know it deep in our hearts and gut. I had every immune and blood test known to medicine. There is nothing else but this. This virus is the modern scourge of mankind. This all happened within 6 months. Then, as it does, the virus slowly retreated into my nerves. Outbreaks became less severe, though still absolutely nonstop on some part of my body. I had whitlow on fingers and toes. Clusters of blisters on my arms, scalp, back, neck, and lower legs. If I brushed against something that irritated my skin, an outbreak began within 12-18 hours. Am I trying to claim the worst experience ever? No. I am here because I survived. I am now still taking daily doses of both Valacyclovir and Famvir, alternating 3 times a day. I take every supplement. I have found a psychiatrist who understands what this does to our minds and souls. My bipolar is being handled with success for the 1st time in my adult life. I got married, and we now have a beautiful healthy 6 month old boy. There are times when I am covered in bandages so I can hold him without worrying of infection, but somehow it works. If I can live with this, we all can. It has made me treat my body like the temple it is. I don't drink, smoke, eat processed foods or sugar, wear sunscreen, sunglasses, bathe in epsom salts and oils, drink water with decaf green tea all day. There is still some viral activity every day. A nerve twinge, a lump of hot skin erupting. But I have found ways to stop or lessen the pain and duration. 1. Anasept gel (amazon prime). This is a wound cleaning gel or spray that is used in hospitals and kills very gently almost all microbes. Think of it as Lysol for the skin. It is used for burn victims and people with bed sores, diabetic ulcers, etc. I am shocked that nowhere online can I find mention of it with HSV. You can use this anywhere including the genitals and anus. I keep a tube of this in the car, in my desk, and in every bathroom. 2. Bactine. This is less effective for me than the Anasept, but still works to calm the skin after sex, swimming, golf and sweating, etc. I keep this everywhere as well and it is available in almost every store. 3. Orajel max strength triple medicated gel. This is the only thing I have found OTC for the mucous membranes and hard surfaces of the mouth and inside the nose. Every night before bed I put it on my tongue and coat my mouth, as dryness tends to have me wake with new blisters. 4. Anti-dandruff organic shampoos. I use a lavender one that has helped control the large blisters on the scalp and back of the neck. 5. Ice. Always. 6. Biofreeze menthol spray. If I have been in the sun, and my shoulders start to tingle, or my low back, I apply this liberally. Cooling and therapeutic to calm the skin. 7. Faith and prayer. I have never had spirituality or faith in a higher power until the last several years. I cannot stress enough the power of prayer to calm the body, heart, and mind. I hope this helps. Modern medicine does little for me, but treating these bastards as soon as I sense them is helping me survive and even thrive. If I can do this, you can too. I wish for you all the love and peace in the universe. -J
  6. Hi all, Am now 8 months into this dance with H. Been thru it all, and mentally/emotionally haven't felt this good in years. Physically, not much to it anymore. I can eat chocolate, nuts, drink soda, alcohol, not sleep, exercise like crazy and have loads of stress without a genital outbreak. I know, it sounds terrible that I'm about to complain next, but if not here then where else? I can masturbate with no lube, with lube, etc. and nary a red bump. But lord help me when I have sex with my girlfriend. Have bought all the expensive lubes on the market, we've tried shaving and not shaving, different positions. Inevitably within 18-24hrs I get a large number of small blisters in random locations. Now, this is nothing like my first OB's where I couldn't walk straight. They tend to go away much faster and Bactine has turned out to be a godsend. But what gives? My own hand creates a ton more friction and nothing happens. So confused. Any other guys seeing this happen?
  7. since my diagnosis of HSV2, i've noticed herpes EVERYWHERE. the waitress the other morning? check. clerk at Target? check. carwash attendant? check. multiple coworkers? check. it is absolutely amazing to me how i never would have noticed before, or just dismissed it as something else. and it blows my mind how many intelligent people have no idea that "cold sore/fever blister" are herpes.
  8. Happy Monday all... Need some guidance from some vets if possible please on meds...diagnosed 4.5 months ago. Started acyclovir 2000mg/day and continued that for 3 weeks due to number and severity of the primary ulcers. Outbreaks continued pretty much nonstop, my Dr. upped me to 4000mg/day during outbreaks and 2800mg/day in between. He was shocked that my H was not responding. 4000/day is the shingles dose. Except I was kept on it for another 3 weeks, not 10 days. I took a MINIMUM of 1600mg/day of acyclovir until this Jan 9th. Then my Dr. and I decided Valtrex was better option, better absorbed, higher blood levels, less pills a day. It has been 6 weeks now on Valtrex...still at 2000mg/day. Normal suppressive is 1000mg/day. My outbreaks are shorter but still happening very often. Do I need to stick with Valtrex longer, give my whole system a chance with it, or try Famvir? I am the rare bird who only has HSV2 but orally and genitally. The cold sores are very minor so far "fingers crossed", as I've heard that should be the case with 2 orally. Thanks guys.
  9. i keep a jar of DMSO with aloe (the scented one/orange label, trust me). i also dump a small jar of alum and mix it into the DMSO. Seems to really help with the soreness and redness/inflammation. be careful with DMSO, it actually will carry ANY other chemical you have on your skin deeper into the tissue. think of it like a carrier oil with essential oils. wash your hands/use a q tip. this also makes it effective to use with another topical like tea tree oil. apply DMSO, wait 15, then dab on the TTO. it will absorb a ton more than normal.
  10. I started with Acyclovir...at one point my Dr. had me on 4000mg a day for 10 days. The dosage they give for Shingles. It helped, but only at really high doses. Then I read that Valtrex (Valacyclovir...) is the prodrug or precursor to Acyclovir. That means when you take Valtrex, your body turns it into Acyclovir. One benefit to this is that much more of the drug gets into your blood to stop the viral particles from attaching to new cells, AND the drug stays in the blood and cells longer than plain Acyclovir. I had my Infectious Disease Dr. switch me to Valtrex a month ago. My outbreaks seem to be healing better and are much less painful...but it is NOT stopping them/preventing them. I am taking 2000mg a day of Valtrex (a lot), but am assured by my ID Dr. that months of this is perfectly ok while my body learns to fight. I am at 4 months today, so will stay on Valtrex another 2 months solid. Have read also that time with the drug and consistency is important, even time of day each day. If at 6 months I have not seen drastic progress, I will move on to Famvir. I do believe that certain bodies may not respond as well. As for resistance, I am sure its out there. I have to tell myself "think how much WORSE it might be without the suppressive therapy." As for side effects, I notice some tiredness here and occasional stomach rumbling, but nothing major thank god. Please try and get an appointment with an Infectious Disease doctor.
  11. Hi all, So been fighting some "other" virus the last couple weeks, and finally end of last week started to feel better. Amazingly, the H was somewhat calm during this other immune battle. So, in the spirit of love and since downstairs had been so calm my girlfriend and I planned a lovely evening of highly lubed sex...meaning 10 minutes when I say "evening". It also happened to be my 4 month H anniversary, yeah! Yesterday morning, wake up, no prodrome, etc. Go to a movie last night, get home, take a shower, and boom. Literally NINE little friends (mine are like whitehead pimples) all over my gear. Literally almost as bad as my primary. I cannot imagine what it would feel like if it weren't for the daily Valtrex. Going to really observe this and try to not overtreat with oils or anything moist, see how long they hang around. I know my immune system is still down and out, and I pushed the envelope, but was hoping after 4 months for a better response. Was the 10 minutes worth it? Yes and no. In some ways, being with your giver after diagnosis takes a whole other toll emotionally. Her never having a noticeable outbreak gives her a mental space to lock H away and just truck on. Whereas I have to deal monthly/weekly/daily/hourly right now. She is leaving for 3 weeks, and I am looking forward to the space to heal and deal on my own. It is amazing how quickly these months have passed. My depression is really starting to lift, thank god. When you're in that head space, each minute feels like a death sentence. I cannot recommend strongly enough that if you are having issues coping and are depressed GET HELP from a psychiatrist and get some medicine. It's the same as taking Valtrex every day for H. There's even clinical proof now that inflammation (the root of disease) can cause depression...guess what H does??? Causes massive tissue inflammation. After 12 days on Zoloft I finally feel able to cope with this better each morning. Hope you all are dealing well today, good thoughts to all.
  12. I'm a big believer in minimizing how many chemicals we put in our bodies...that being said, I've never had to deal with this kind of stress and depression from a chronic illness. The ups and downs are like nothing I've experienced, and I am prone to depression. I am taking the supplements, the valtrex, zoloft and clonopin for anxiety and when needed pain meds for mouth ulcers. Sounds like the opening of an Intervention episode! But, if you REALLY become your own health advocate and do the research like Dancer has suggested, these things can be the supports we need to keep a floor underneath us right now. I have no problem surrendering to my current needs for this, and the relief is absolutely real. Make sure you do things like find a doctor you can email/communicate with as needed, who will order you liver/kidney function tests to make sure the meds aren't hurting you long term. With our health care system, these things become more and more the patient's responsibility to manage. Our doctors are just seeing too many people at once. Good luck.
  13. I buy the USDA Organic oils from www.rosemarysgarden.com...usually arrives in a few days. Veriditas is the only company I can find with true organic processes.
  14. oh, and simply type the "@" symbol followed by the username you are referring to and the post will change it to blue for you when its saved.
  15. @ihaveittoo1975...my 4 month H anniversary is in a few days. i am still with my giver, and sex is definitely a trigger for me. i am also very healthy, my great internist ran me for blood counts/hormones/thyroid/cortisol, etc. and found nothing else wrong. stress is absolutely it. without a doubt. my therapist has actually challenged me to not "live in a desert", as i have been restrictive to the point of obsession. so now i have a little coffee here and there, some mexican food (thought i'd die without it), etc. H has still made me so much healthier, ESPECIALLY with refined sugars. I was a soda addict, and have completely stopped. it was harder than cigarettes 5 years ago. also used to use a lot of pot, and have cut that out. alcohol is down 97% as well, used to drink heavily a few nights a month with the guys. i am slowly starting to experiment with sunlight, which is oddly what worries me most. i am an avid golfer, and haven't been playing. going to force myself this weekend no matter what. living in southern california the sun is always there. i've recently started meds for depression and anxiety, and i can tell my outlook is improving dramatically. fought that for the last 6 weeks or so, and its a miracle my outbreaks haven't been 100x more severe. On the advice of my ID specialist, taking 2g/day valtrex along with lysine/transfer factor/red algae/b's/zinc/omegas+D. i had sunk so low that i even quit my meditation practice for fear of being alone in my head. new beginning with that today as well. guided meditations allow you to not feel as "alone" with your thoughts while providing the relaxation and calm. i use my iphone as there are a ton of great apps for cheap. look up "Sounds True" for those. take care.
  16. @clark... I am having a ton of early success with essential oils for my lips (morning and night)...when i get that burning sensation, i liberally apply a mixture of lavender/melissa/thyme thymol/myrrh/tea tree in a grapeseed carrier oil. i use Veriditas oils (true organic and WAY cheaper than doterra). the owner of the company, Melissa, is also available by email to answer any questions. she also makes a cold sore formula that ive used, but its still pricey compared to making it at home. during the day (since the oils have a strong odor), i keep applying the Super Lysine + lip balm. it has lysine, tea tree, propolis, honey, and a ton of other all natural ingredients. been working MUCH better than Abreva for me lately. Any cold sores on the lips are super tiny if they linger, and many disappear same day. Super Lysine also has a chapstick version with similar ingredients and is SPF 21 for sun exposure. i also grew a lovely new beard to keep the sun off the mouth area, good thing my lady really likes it. not shaving is a huge plus for guys, and you don't worry about spreading it that way with microcuts.
  17. Also, I believe in supporting what Adrial is doing here. If you are interested, just email him and he can set up a way for you to make a small monthly donation from your credit card. Was really simple and easy, and sites like this take a lot of resources to keep up. My new goal is to post something positive on here every day, and really use it as an emotional cleanse. There are a lot of wonderful people here.
  18. Hi all, I know that we should not attach to the idea of vaccines/cures...but even if we don't get something in our near future wouldn't it be nice to change medical history for those who follow us and have H/Hepatitis/HIV, etc enter their lives? I spoke recently with the gentlemen who runs the DRACO fund, and is trying to help get larger animal studies started at the Draper Lab where DRACO is now housed. If we all pledge $10, it will get us there. Also, I sent an email to the Gates Foundation asking them to help. $1 million is hardly anything to them, and they already support HPV in a big way. There's also Dr. Halford who wants to trial his live attenuated vaccine...I think a little time and a few less Starbuck's drinks for a month is well worth it. Just google DRACO fund, or look on Facebook.
  19. so have had these mouth ulcers now for 2 weeks straight...went to my GP/internist (an amazing dr) yesterday morning to have them cultured. one is irregular shaped on my hard palate and is the size of a dime. ouch. got some benadryl/lidocaine mouth rinse which literally numbs the mouth completely. finally got three normal meals down and that alone made me feel better. by the end of each day though, its hard to talk or swallow again. dr. is pretty concerned that all my blood/hormone/immune functions look normal and i am still getting constant outbreaks. just had a nice couple pop in the rear for the first time, what a delight! i do realize i am not even 4 months in, and need to be patient with my body. despite have these issues in all three areas at any given moment, today was a good mental day. saw some friends yesterday for the first time in a month for super bowl, had lunch with another old friend today. its amazing how just doing those couple things helps, and not letting yourself be imprisoned in your own home. hopefully the mouth cultures come back negative...but if not i guess i will deal again like i have these last months.
  20. @serendipity515, thanks so much for those kind words. the mood swings right now are just incredible. a few hours of doing ok, followed by a slide down the hole again. i think not sleeping/eating/depression is absolutely what's going on. i'm taking zinc/lysine/turmeric/b complex every day too. its probably a wonder things aren't much worse. i've only had 1 tiny sore on the outside of my mouth since this 2 weeks of internal ulcers, so maybe it is just canker sores. boy, i never thought i'd pray for those. thanks again and i'm so glad i found this site.
  21. I'm really nearing the end of my rope. I don't know what to do anymore. I've never felt this bad in my life, this completely and utterly depressed. I am talking to everyone, seeing the Dr, therapist, acupuncture, resting, eating healthy, getting chiro, stopped sugar, caffeine, yes ALL caffeine. Only have H-2, 4 months now. My body feels like a prison. The dr says I just have canker sores, but I know in my heart what's really going on. My mouth feels like I have razor blades in it. New ulcers popping up, along with around the mouth. Craziest part is, everywhere else is nice and calm/normal now.The dr's just make this sound like a stupid rash, and it's like a burning slicing hell. I have moments of time where I get some relief, mostly when I am dreaming. Then I wake up 10 times a night and have reality come crashing back down. People are starting to ask what's wrong with me, why am I so drawn and skinny. I'm trying to eat calories and fat, whenever I can. I'm not skipping meals. I'm not going on a bachelor party next month because if I drink and don't sleep it explodes. I've never been this scared in my life, and I feel like I can't keep on like this. I can feel myself starting to push my giver away, because I can't imagine a "normal" life anymore. I know I resent her on some level, even though this can happen to anyone at any time. I could deal with this "down there". But I can't even kiss, share a drink, I'm terrified to shake hands with people. I hate god, the universe, whatever for letting this happen to me. I hate everyone else who doesn't know what I am going thru. Even my dogs are depressed. They just lie around with me while I cry. 2g of valtrex a day now for 3 weeks and I can just feel that if it weren't for that, I'd be on of those nightmare Google images. I'm utterly sensitive to my body, emotions, etc. I hate that we have to convince some MD to take a swab, yet I know they feel helpless too with so few options. I have EVERYTHING else going for me, and now it hurts to smile.
  22. @seeker...thank you friend. Theres something different about hiding this thing in your pants vs the oral/facial. At least mentally for me. I'm so glad to find you all here, though I wish none of us needed it!! The really good news is that I'm only a few months in, and it really feels like being a newborn struggling to make your way in a new world at times. H is causing me to shed (literally) all of the anger and negativity I've carried along with my old self. In some ways I do know this will make me better. I can't remember allowing myself to feel emotions this strong, I always numbed out or stuffed it. No choice now for us. @jmac111...the fear of intimacy is a huge one so far for me too. Kissing is the ultimate expression sometimes. the good news is, despite symptoms that keep showing up, I can tell and feel to my core that they are arising and resolving MUCH faster. I think a lot of the people who post about the "nightmare scenarios" that we've all spent hours reading and making ourselves crazy over, I think they may be trying all the therapies we know of. But I don't believe they are making the commitment that H requires to truly treat these temporary bodies like temples. I have done more reading than is probably healthy, and I see so much of people who are smoking, drinking a ton, eating fast food or junk. Caffeine, drugs, etc. it may take a good long time, but if we do it right I think we can live in peace.
  23. Hi all, I too was diagnosed back in October with oral/genital HSV-2. Just traveled back east, drank some, jet lag...bam. I am seeing an infectious disease specialist next week, and am taking 2000MG A DAY of Valtrex, now for 2 weeks. I have a sore throat on the right side, and a LOT of tiny blisters just inside my upper lip. I can deal with GHSV, but this is just too much. My job requires a lot of "face time" and every moment now is agony. "Can they see it, can they???" Just went back on antidepressants to hopefully ease the mental stress some, as depression has come on very very strong. Craziest thing is, I have NEVER been healthier in my life when I was diagnosed. Drinking almost zero, quit smoking pot, cut soda, most coffee, exercising, meditation, vitamins. My first serious girlfriend after a divorce last year and she's asymptomatic...we took it slow, and both got tested by our Dr's (no HSV of course). Voila, 2 days after sex my new friend shows up downstairs AND upstairs. I was seronegative at culture time, now we are both only seropositive HSV2. No doubts. I am with you all, the "limited recurrence" for HSV2 oral line I think is an assumption only. Nobody knows but us. As of now, downstairs is nice and calm while the oral rages on. No telling with this thing and our systems, no patterns. I thank heaven for every day I make it thru, and waking up the next morning is a trial all of its own. Let's help each other, as talking even to my GF now seems like a burden to her. She's already devastated this is happening to me. Love to you all, off to cuddle my body with more green tea (decaf), veggies, vitamins, and Valtrex. Wow. -Hereandnow
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