Herpes is destroying my body and now my life is done...Thanks for reading!!!

[anonymousone]

I contracted H about 5 years ago through a series of events as part of a downward spiral of my life. H was the final bow on a life that went from reasonably successful to an utter disaster. (No illegal things involved)

Just to provide some quick background info:

• H altered my body chemistry -I had strong body chemistry as a child. (I started using deodorant at 6yo) I was able to finally get it under full control in my college years through a change in diet, staying clean shaven, using an occasional hospital grade wash, and a prescription strength deodorant at night when the weather got over 70 degrees. Since I contracted H none of these things work. My underarms are still fine. The connective area between my crotch and my genitals smells terrible no matter what I do. I have always been sensitive to smell so this has taken a toll on me to the point where I hate myself.

 

• H altered my genital and my ability to lubricate before sex -My genitalia NEVER feels normal as in cool and comfy (as it did pre-H). It always feel low-grade inflamed or sticky (I'm very sensitive). I use DMSO liquid to kill the low-grade sensations. However, I can't wear certain fabrics anymore. I was also a faucet during sex prior to this and now I'm closer to a desert. I have had sex since my diagnosis, as an FYI, but I gave up sex completely a few years ago. I no longer enjoy it.

 

• In the past 2 years, H was transferred to my eye and now my entire face  -I dont really have strong symptoms so its always been hard to tell when I have an active outbreak. I dont want to get into ALL the details but the spreading all over my face is as a result of skin needling. My outer eyelids burn like hell. The doctor cant see anything in my retina or cornea. Despite how many times I've gone to the Dr. I believe its under my eye and in the corner (the pink parts). My under eye area gets very puffy and asymmetric. The Dr's won't confirm H as my eye diagnosis but it responds to an onslaught of antivirals so I've labeled it as duck because it walks and quacks like one. There were doctors that I had to beg for antivirals to treat it. Now I started lying just so that I am able to keep a full prescription on hand when I need it.

 

• In the past 2 months the herpes bumps stay on my face all the time. They are not patchy red blisters but little fine skin colored pimples on my cheeks. Noone would probably know if they saw it. I have seen a couple of physicians for other ailments and none of them ever questioned my face. (Just so you know.) The reason I know its herpes is because it itches like hell just like the patch on my inner thy and has the same unassuming characteristics. Drs are always skeptical when I tell them its herpes because they are used to seeing red splotchy pus filled bumps and mine have never looked anything like this. Its been a nightmare trying to get proper treatment from health professionals!!

 

• I've always gotten compliments on how young I look despite being over 40's. I always got carded while out with younger friends who didnt get carded. I used to get dermatologic skin treatments on my face because my skin has been acne prone since my teens but now those treatments irritate my face. My face looks gross now and when I smile it has developed light lumpy folds due to the uneven texture of my skin. I splash DMSO on my face to stop the itch and I feel like it may be damaging my skin because it sometimes burns like hell (I rinse it off when it does).

 

• I started sleeping with socks on my hands in case I itch something at night without knowing it. I also use material as a barrier to itch myself during the day then wash my hands frequently because I am paranoid about spreading it any further. However, despite me being careful. A small itchy bump is popping up in random places. Like my wrist, arm, neck, the back of my hand, my breast, etc. I mix lysine and lemon juice which sometimes soothes the skin and the itch but the bumps on my face still dont go away. Most other areas do.ything

 

• I never had to worry about my diet before it spread all over. I cycle between pescatarian, vegan and vegetarian. But now that it has spread I am hypersensitive to everything. Any trace of arginine, chocolate or sugars (artificial or natural) sends my face into a tizzy! This level of restriction is too much especially when considering other areas of my life suck.

 

I was depressed before H and it got much worst after H. Now forget it! I lost all of my friends except one. I haven't worked in over 2 years. (I'm not here to discuss my depression. I am in treatment and it hasn't helped! This is just background info for my post. Please stick to the topic of H.) As a result of all of this, I dont think I will ever marry.

I fear touching people as I dont want to spread it to anyone. I have told previous partners about H before it spread allover and it wasnt a big deal to anyone except for one idiot that got dumped with the quickness. But now that its everywhere, who would ever want to deal with someone who's a walking herpes disaster?? I wouldn't!!!

I also don't feel like I will be able to have children as I fear passing it to them in the process of normal daily care. All I picture is myself wearing elbow length gloves and putting mittens on the kids so they dont accidentally touch me. 

I come from a background of trauma. I have been on my own since mid teens. My only wish EVER was to have a loving family (husband, etc.). And now that I'm in my 40s with all of these problems I know that will never happen. That was my only reason for surviving since my teenage years.

I've tried to look to see if theres any kind of plastic surgery (lower bleph) or skin treatment (peels, etc.) but since my outbreaks dont seem to go away on my face I don't think I'm a candidate.

At this point, I've given up on life! Wouldn't you??

------------------------------------

Please dont offer any empty platitudes. I'm sure you mean well but It won't help. No offense to you. I posted this on the off chance that someone had any experience with a rare case as severe as mine. Anyway, I doubt this will get much response especially with the preceding line I just typed, however I just thought I'd give it a shot in case anyone had any info that could help. Thanks!

 

P.S. - For those who have H and are trying to adapt. Be thankful because it could be a lot worse! I'm sure there's no one here that would want to be in my shoes. 

[Worriedgal89]

I know you said no empty platitudes but I'm going to anyways , because I can't just read this and not say anything . Your body is doing something without your permission , and you are letting that define you . I also have rampant herpes , every day symptoms that seem resistant to anti virals and I think I have also transferred to my eye . My husband gets out breaks on his nose ,eye,lip, and butt cheeks. I am going through terrible depression about this too and never want to have sex either , so I know where you are coming from on that subject . I'm assuming you have had a blood test? Or been to a dermatologist? I would recommend going to Westover Heights.com and paying to Skype with Terri Warren , who can perhaps help you to get a western blot test . I'm sorry you are so low , this sounds awful and unbearable . I truly hope you find relief 

[Worriedgal89]

Also, your symptoms sound nothing like herpes .. if you haven't had a blood test or confirmed swab you might be fretting about something that isn't even herpes . There are so many skin conditions or other things that this could be . Don't give up , a lot of doctors don't know what they are talking about .. I have been told 3 or 4 times I didn't have herpes by doc's but after one appt I went home and broke out in blisters down below so I am pretty positive I do have it . Herpes doesn't just stay as skin coloured itchy bumps on your face. Sooo many other things can be itchy . 

[LoveTheMountains]

Hi there, long response here but I hope some of it will be useful.   I couldn't help but notice you  mentioned being in your 40's.  I too and in my 40's and it is a game changer in terms of health. Almost everyone I know from their mid 30's on  (and I assume most of them do NOT have herpes) are already going through or starting to go through all kinds of major changes is their health.  Many that you have listed.  Many that you have not.  Most seem to have a common denominator in that they all relate to inflammatory responses and hormonal changes in the body.  One thing I've noticed on herpes websites is that people often want to connect every physical symptom they have to herpes.  I mean it is and it isn't. It IS in the sense that the body/immune system is all connected.  But we have to bare in mind that human beings are bundles of interactions of nerves and germs and chemistry and environment and mind etc etc etc.  Now compound that with age related decline with mental health (you mentioned depression) and your body is working overtime.  

What I personally am finding as well as my peers in my age group is that we are having to reevaluate everything about our lives and lifestyles (diets, exercise, bad habits, even career choices) and think about it in context of our health and many of us are overhauling our lives to address these changes.  Heck, I have friends who are parents of young adults whose lives are so dysfunctional that its physically impacting my friends' (plural!) health and many of them are having to learn to detach from what's going on with their kids in order to gain control of their own suffering health. The mind-body connection is a fascinating and very real thing.  Anyway back to aging;  I have vague memories of seeing my parents go through something like this in their own way (and they did not have access to the kinds of detailed health and science information that we have now). I remember my dad in his late 30's and early 40's musing about how your body starts to "betray" you in all kinds of ways. I had no idea what he meant; now I get it!  My suggestion is take a multi-pronged approach to your health and well being because there is likely no one silver bullet solution.  Now may not be the time to focus on sex and marriage (or dwelling on what you feel is the hopelessness of it either).  I personally am putting that stuff on the back burner right now due to major health changes in my life.  I'm dealing with sudden and drastic lung functioning issues.  And yup, at first in the back of my mind I was thinking herpes was the culprit.  Turns out asthma, COPD, and a whole host of lung decline occurs in a percentage of women with no history of smoking, around their 40's.  Its all part of the body's hormonal changes and age related decline.

 I come in contact with many people who reject the idea that their health issues could be age related. That's because we live in a day and age where we believe we are "supposed" to look and feel a certain way.  Regardless of what we think or the media tells us,  human beings peak biologically in just about every physical area (respiratory strength, muscle mass, hydration, reproductive systems, bone mass, etc) by their late 20's.  We're designed that way.  It's modern medicine and lifestyle changes that has extended our life spans  and functioning beyond what our body has evolved to handle.  So I think its important to both look at health and lifestyle as well as gain some healthy level of acceptance that your health is also evolving in ways that may not be related to herpes at all.  Acceptance (of herpes, one's mortality, limitations, etc) is vital for good mental health; and that will affect your physical health too.

[LoveTheMountains]

Oh crap I forgot  I wanted to add this too.  You mentioned your wish to have a loving husband/family.  I have watched and continue to see women/men find their "one" at every stage in life. Yes, the window of actually birthing of a biological child does have limits but I'm seeing women who longed for that still find contentment and blissful relationships long after the traditional years that we think its supposed to happen. In fact I'm hearing stories more and more often from people who are finding their more suitable match after "mid-life" these days because they feel they "know themselves better" or "have worked through my issues and can truly be a good partner now".

I'm an avid reader of science and social science and big believer in using books to get you through the dark nights (literally- those nights when the mind is just spiraling). Here's a few books I reccomend:

 

LOVE AGAIN BY EVE PELL;  numerous stories of people finding love late in life (some after being widowed, some who put careers first, some who were always unlucky in love in the past. Very inspirational when you are feeling low about the future of your lovelife)

 

THE TELOMORE EFFECT:  fascinating book with practical info!

Quote: "In the book “The Telomere Effect: A Revolutionary Approach to Living Younger, Healthier, Longer,” Nobel Prize-winning molecular biologist Elizabeth Blackburn, who was part of a team that discovered how telomeres protect the chromosome, and health psychologist Elissa Epel claim that specific practices including eating well, sleeping well and a positive frame of mind “can help reduce chronic disease and improve wellbeing, all the way down to our cells and all the way through our lives.”

 

SUPERBETTER: "Quote"  "In  2009, internationally renowned game designer Jane McGonigal suffered a severe concussion. Unable to think clearly or work or even get out of bed, she became anxious and depressed, even suicidal. But rather than let herself sink further, she decided to get better by doing what she does best: she turned her recovery process into a resilience-building game. What started as a simple motivational exercise quickly became a set of rules for “post-traumatic growth” that she shared on her blog. These rules led to a digital game and a major research study with the National Institutes of Health. Today nearly half a million people have played SuperBetter to get stronger, happier, and healthier."

Want a little more random evidence of people finding partners late in life?  Wedding planners and all the related jobs (photographers, dress designers, etc" are starting to retool and rethink their marketing strategies, dress designs, etc. because so many people are marrying late in life or marrying again late in life and the wedding industry was traditionally targeted for a much younger cohort.

But again,  right now I think you really gotta just focus on your health and getting to a state of internal happiness right now.  One last piece of advice on how to get there, find something you truly love and dive into it (as a distraction initially : ). For me, it's been getting back to my love of dance. For other friends its hiking, marathon running, painting.  Something that you can look forward to once or more times a week.  

If I think of anything more I'll let you know!  Best wishes to you!!!

[Jasmine10]

Hi,

I am so sorry to hear you are going through all this! The suggestion I have is to sign up for the clinical trials of pritelivir, a new herpes drug currently in I think Phase 2 of testing that has already shown to be superior to Valtrex. Perhaps it can help you and you can get to use it before the years it's gonna take for the darn thing to come out to market!

[ash128083]

On 11/8/2019 at 5:18 AM, Jasmine10 said:

Hi,

I am so sorry to hear you are going through all this! The suggestion I have is to sign up for the clinical trials of pritelivir, a new herpes drug currently in I think Phase 2 of testing that has already shown to be superior to Valtrex. Perhaps it can help you and you can get to use it before the years it's gonna take for the darn thing to come out to market!

I am suffering greatly as well. I’m 34 and two years ago this disease has made my life spiral out of control after not having any affect on me for 8 years. Where ate the clinical trials for that drug? I am so desperate at this point.

[Clarity]

Three things, I’ll skip the fluff because the Post above are amazing. 1. The best anti inflammation diet is to cut processed food and take a paleo/primal approach. I know your vegan but it sounds like your life is on the line. Go for it. Go all in. Just look up the paleo diet or the primal blueprint. 2. Lume deodorant can be used on your groin and many people have had much success. Natural ingredients that may even help with herpes symptoms. 3. I have heard that your immune system changes every 7 years. You could look into that. Perhaps you’re going through a change. 
 

if I were you, I’d be on an organic paleo diet while only using natural products. For example, natural laundry soap, makeup, no candles or air fresheners, take a fine tooth comb through your whole life and get back to basics and nature. I live like this anyways. And it’s not a hassle just takes some getting used to. 

[no_joyride]

Take part in a medical trial....its worth a shot

https://www.clinicaltrials.gov/ct2/home

[Stunnedbythis]

On 8/11/2019 at 7:53 PM, anonymousone said:

I contracted H about 5 years ago through a series of events as part of a downward spiral of my life. H was the final bow on a life that went from reasonably successful to an utter disaster. (No illegal things involved)

Just to provide some quick background info:

• H altered my body chemistry -I had strong body chemistry as a child. (I started using deodorant at 6yo) I was able to finally get it under full control in my college years through a change in diet, staying clean shaven, using an occasional hospital grade wash, and a prescription strength deodorant at night when the weather got over 70 degrees. Since I contracted H none of these things work. My underarms are still fine. The connective area between my crotch and my genitals smells terrible no matter what I do. I have always been sensitive to smell so this has taken a toll on me to the point where I hate myself.

 

• H altered my genital and my ability to lubricate before sex -My genitalia NEVER feels normal as in cool and comfy (as it did pre-H). It always feel low-grade inflamed or sticky (I'm very sensitive). I use DMSO liquid to kill the low-grade sensations. However, I can't wear certain fabrics anymore. I was also a faucet during sex prior to this and now I'm closer to a desert. I have had sex since my diagnosis, as an FYI, but I gave up sex completely a few years ago. I no longer enjoy it.

 

• In the past 2 years, H was transferred to my eye and now my entire face  -I dont really have strong symptoms so its always been hard to tell when I have an active outbreak. I dont want to get into ALL the details but the spreading all over my face is as a result of skin needling. My outer eyelids burn like hell. The doctor cant see anything in my retina or cornea. Despite how many times I've gone to the Dr. I believe its under my eye and in the corner (the pink parts). My under eye area gets very puffy and asymmetric. The Dr's won't confirm H as my eye diagnosis but it responds to an onslaught of antivirals so I've labeled it as duck because it walks and quacks like one. There were doctors that I had to beg for antivirals to treat it. Now I started lying just so that I am able to keep a full prescription on hand when I need it.

 

• In the past 2 months the herpes bumps stay on my face all the time. They are not patchy red blisters but little fine skin colored pimples on my cheeks. Noone would probably know if they saw it. I have seen a couple of physicians for other ailments and none of them ever questioned my face. (Just so you know.) The reason I know its herpes is because it itches like hell just like the patch on my inner thy and has the same unassuming characteristics. Drs are always skeptical when I tell them its herpes because they are used to seeing red splotchy pus filled bumps and mine have never looked anything like this. Its been a nightmare trying to get proper treatment from health professionals!!

 

• I've always gotten compliments on how young I look despite being over 40's. I always got carded while out with younger friends who didnt get carded. I used to get dermatologic skin treatments on my face because my skin has been acne prone since my teens but now those treatments irritate my face. My face looks gross now and when I smile it has developed light lumpy folds due to the uneven texture of my skin. I splash DMSO on my face to stop the itch and I feel like it may be damaging my skin because it sometimes burns like hell (I rinse it off when it does).

 

• I started sleeping with socks on my hands in case I itch something at night without knowing it. I also use material as a barrier to itch myself during the day then wash my hands frequently because I am paranoid about spreading it any further. However, despite me being careful. A small itchy bump is popping up in random places. Like my wrist, arm, neck, the back of my hand, my breast, etc. I mix lysine and lemon juice which sometimes soothes the skin and the itch but the bumps on my face still dont go away. Most other areas do.ything

 

• I never had to worry about my diet before it spread all over. I cycle between pescatarian, vegan and vegetarian. But now that it has spread I am hypersensitive to everything. Any trace of arginine, chocolate or sugars (artificial or natural) sends my face into a tizzy! This level of restriction is too much especially when considering other areas of my life suck.

 

I was depressed before H and it got much worst after H. Now forget it! I lost all of my friends except one. I haven't worked in over 2 years. (I'm not here to discuss my depression. I am in treatment and it hasn't helped! This is just background info for my post. Please stick to the topic of H.) As a result of all of this, I dont think I will ever marry.

I fear touching people as I dont want to spread it to anyone. I have told previous partners about H before it spread allover and it wasnt a big deal to anyone except for one idiot that got dumped with the quickness. But now that its everywhere, who would ever want to deal with someone who's a walking herpes disaster?? I wouldn't!!!

I also don't feel like I will be able to have children as I fear passing it to them in the process of normal daily care. All I picture is myself wearing elbow length gloves and putting mittens on the kids so they dont accidentally touch me. 

I come from a background of trauma. I have been on my own since mid teens. My only wish EVER was to have a loving family (husband, etc.). And now that I'm in my 40s with all of these problems I know that will never happen. That was my only reason for surviving since my teenage years.

I've tried to look to see if theres any kind of plastic surgery (lower bleph) or skin treatment (peels, etc.) but since my outbreaks dont seem to go away on my face I don't think I'm a candidate.

At this point, I've given up on life! Wouldn't you??

------------------------------------

Please dont offer any empty platitudes. I'm sure you mean well but It won't help. No offense to you. I posted this on the off chance that someone had any experience with a rare case as severe as mine. Anyway, I doubt this will get much response especially with the preceding line I just typed, however I just thought I'd give it a shot in case anyone had any info that could help. Thanks!

 

P.S. - For those who have H and are trying to adapt. Be thankful because it could be a lot worse! I'm sure there's no one here that would want to be in my shoes. 

I'm 56 and daily itch pain crawl and more over entire face. Every second for 2 yrs. Finally I am dealing with a Dr. But naturalpath that has had successes with ocular herpes and progressive face herpes. I talked with a professor of Nat path last yr that was one of her professors. He was awful and she is wonderful. She also has herpes. I only say this because after having all dermatologists reject referrals 6 and the Nuero saying buy a bike enjoy life with community sex health dr saying its dermatitis and IGG being neg . Yet symptoms say otherwise . Can't do westen blot in Canada.

Nat path says she has had.successes. I am following the protocol but only 4 or so weeks in..she is changing my bio film and immune system. 

Finally I have hope. Maybe wont be perfect but improving would be good

.

Also may consider a nutritionist that has 4 autoimmune issues of her own tackled. So may try incorporating diet. But need to find right person not just right profession 

 

Be well...much love 

 

[TreeHugger44]

Have you had a positive IgG or swab?  I also feel like it has spread to my eyes but luckily no actual vision part of the eye involvement.  Also have similar facial bumps.   No pimples, stingy. But of course doctors don't believe us.