4 years with highly aggressive HSV2...

[hereandnow]

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

 

[hereandnow]

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. 

[Sumshine]

Wow!!! I've never heard of such an aggressive form of H. I'm so glad things are improving. So happy you found love and happiness and now have a baby!!! I've had this decades....a much less aggressive form, of course. I have a wonderful life as well. Kudos to you and thanks for sharing!

[PaintedToes]

Thank you very much for sharing all of those ways to deal with your HSV. Good to know! 

 

I also saw someone mention using tea tree oil. I use that. Just thought I'd add it in there.