Jump to content
World's Largest Herpes Support Group
Sign in to follow this  
JustMe316

Depressed. Constant prodrome, no OB

Recommended Posts

JustMe316

I posted this as a reply to another thread a minute ago, but it was an old thread and I'm really depressed and really just need someone to talk to who might have or be going through the same thing. I don't know what to do anymore....

I was diagnosed with gHSV-1 almost two years ago and while I have had several actual outbreaks, the most depressing part is the CONSTANT prodrome tingling and burning that just won't go away. If I go a day without feeling it it's a miracle. Sometimes it's localized to the place where I have had all my OBs, usually tingling and burning there, but sometimes the tingling part radiates through my whole groin area and into my thighs.

I take 1g valacyclovir daily as a suppressive, and my doctor once gave me steroid cream to "reset" my nerves when I told her that I was experiencing what would seem to be prodrome symptoms that never manifested into actual OBs. I have been using the cream again lately, but it doesn't seem to be helping. She doesn't seem to give a flying rat's behind about helping me either way I feel, I'm pretty sure I know more about HSV now than she does. I had to argue with her just to get a blood test for determining what type it was after I was diagnosed by swab, because she said "what difference does it make? They're all the same". No, they're not all the same and they're especially not all the same to ME since I'm the one that has this. I told her about the constant tingling and she just told me that if I'm feeling prodrome I have to assume that the virus is active and that I'm contagious. But this has gone on for the better part of two years, with no outbreak actually happening most of the time.

In that regard, how am I ever supposed to live any sort of normal or happy life again? If I'm reminded EVERY SINGLE DAY that I have this thing? If I have to assume I'm ALWAYS contagious whenever I feel a tingle then no one can ever touch me again, and if it's just nerves and not the virus, how am I ever supposed to tell the difference between that and real prodrome? Then no one can touch me then either. I'm really depressed and have been for most of the two years since I found out because the tingling and burning feelings just won't go away. I don't know what to do anymore, I don't want to have to be alone for the rest of my life :(.

I know there are countless threads on this, but has anyone ever been able to find an answer? It just seems like a bunch of people saying "me too, and my doctor tells me I'm crazy..". There has to be SOMETHING that will help..... :'(

Share this post


Link to post
Share on other sites
AychEsVee

Try Vitamin B-12 as a nervous system booster supplement? Obviously talk to someone with a professional background but I've read enough anecdotes on her to know that that helps some people. I'm really sorry for your symptoms, and I hope they improve. Herpes could be the catalyst for another disorder, but this may not be herpes itself. Definitely get a second opinion.

Share this post


Link to post
Share on other sites
AychEsVee

And no, you don't have to assume you're always infectious if you're getting the prodromes.

Share this post


Link to post
Share on other sites
Acesheart

I had prodrome symptoms it felt like crawling ants down my spine tail bone area, it was damaged nerves from epidurals. The tingles and the burning had me using heating pads, cold pillow options, patches, anything I could get my hands on. They took me off Valtrex and ran test, and put me on Lyrica for wide spread nerve pain and diabetic nerves pain, I'm NOT diabetic, but this medication worked LIKE Magic! My prodrome pain disappeared. I saw a Neurologist and he ordered all test, my doctor was Jack-Ass , so this new neurologist doctor was a blessing. I've had over 20 doctors, all you need is the right one for this pain. He listened and I saw on images with colors heat sensors how these damages looked. He offered surgery I declined, so this medication was a God send to me. I do hope this helps. Keep us posted. Hugs Aces xo

Share this post


Link to post
Share on other sites
Paul1976

I also used to have constant itching and tingling however I have used vitamin b 12 2500ug once a day and it seems to really help - have you thought of taking any other vitamins?

Share this post


Link to post
Share on other sites
Acesheart
I also used to have constant itching and tingling however I have used vitamin b 12 2500ug once a day and it seems to really help - have you thought of taking any other vitamins?

I use vitamin b12 complex sublingual 1500 mcg' s twice a day, it goes under the tongue and is fast acting too. :)

Share this post


Link to post
Share on other sites
Sufferingfriend

Sorry OP, I am in the same boat. Most doctors are useless, but at least I got one now, who won't constantly argue with me about every damned thing related to HSV. Honestly, none of them really know much about HSV, and what they do is only from the majority who are assymptomatic, but what about the ones who get it bad? They treat us like liars and nut cases.

If I'm not breaking out, I am suffering CONSTANT prodrome. Honestly, the only time I can live like a normal person is when I have a OB. I can't wait to get a OB. I am suffering a lot right now. I can't concentrate on anything. Not a single thing. Not work, not play.

The ONLY thing that keeps me going is knowing it only started like this last summer, after years of HSV infection. Therefore, I have to believe I can dial it back. Hope at least.

I don't believe vitamin b12 can help, but I am going to order some from Amazon. Can someone recommend me a reputable brand? Someone was also saying this one vitamin for the gut can help. Does anyone know of this?

Share this post


Link to post
Share on other sites
Acesheart

The one for the gut is a Probiotic Asphydolpholis that puts good bacteria into the stomach. I use one from Dr.David Williams, order from Amazon, the b12 also from Dr.Williams. My husband uses Power Buffer Vitamin C, the more supplements and vitamins I can get from just one company, I try to keep it this way. I also use their Vitamin D, since menopause I was put on this one too. It's prolly more expensive then regular pharmacy, but to get everything delivered every month at regular times is well worth it. I've used Lifeextentions.com as well, but they didn't carry the Small Probiotic beadlets we like. They have a hard shell with allows it to get to the stomach intact and start to work/dissolve there.

Share this post


Link to post
Share on other sites
Sufferingfriend

Thnx, I am ordering it now. I'm feeling really stressed. I want to deal with other issues that need my attention, getting back into a relationship, spending time doing work more effectively, continue getting into shape. But this just holds me back. Hmmm, perhaps these supplements and being back in shape will bring me back in balance.

Share this post


Link to post
Share on other sites
Acesheart
Thnx, I am ordering it now. I'm feeling really stressed. I want to deal with other issues that need my attention, getting back into a relationship, spending time doing work more effectively, continue getting into shape. But this just holds me back. Hmmm, perhaps these supplements and being back in shape will bring me back in balance.

Yes friend having body and mind in sinc will help you regain that amazing person you already are. Using the vitamin b12 over decades has really helped me in BOTH those aspects of getting balanced. Good luck. Keep us posted. Hugs Aces xo

Share this post


Link to post
Share on other sites
beyonce47

Hi there, I was previously going through a similar situation in terms of my symptoms up until recently, and I totally understand how emotionally taxing it can be. For me, my constant prodromes stopped when I started on suppressive therapy, however it did take some time for it to kick in. How long have you been on the suppressives? If it continues, don't give up hope! I remember the utter terror I experienced when I thought that I may never be rid of these irritating symptoms for the rest of my life. But I kept pushing, and found something that works for me. I feel totally confident that you will too, even if the suppressive therapy isn't the best route. Read through some of the other posts on here, many people who have had problems with neurological symptoms have been able to alleviate their suffering using a range of different methods, from anti-depressants to accupuncture, and theres something out there that is going to work for you too. Do not give up hope. One day, hopefully sooner rather than later, you will be symptom free. Keep your chin up, and God bless.

Share this post


Link to post
Share on other sites
Bluevibes
I have never found anything in 12 years. Burning as I type this.

What else do you feel just burning? I have burning irritation feels like a constant rash..driving me crazy

Share this post


Link to post
Share on other sites
Kurdt01

My burning radiates throughout my legs pretty constantly. My urethra burns intermittently has well. Sometime I have muscle and joint pain, though the joint pain could just be from getting older, I'm not sure.

Share this post


Link to post
Share on other sites
Bluevibes
My burning radiates throughout my legs pretty constantly. My urethra burns intermittently has well. Sometime I have muscle and joint pain, though the joint pain could just be from getting older, I'm not sure.

Oh I see I just have a rash type feeling from around my anal to my genitals ..a nurse practitioner was the one that diagnosed me with H type 1 she swore it was type 2 however the results were type 1 and been having everyday day discomfort for the past like 3 yrs everyday..5 other drs say it's Not H including one Dermatoloslgist and 3 OB gYn and one General Dr ..

Share this post


Link to post
Share on other sites
Kurdt01

My Ob's switched to my rectum after two years. At one point the OB's were so chronic that the skin never completely healed...I still have OB's there but I can get the skin healed and keep it from getting worse. SITZ BATHS...it's about the only thing that ever helped me in any way. You can get one at the drug along with some Epsom Salts (which I get at the dollar store) just get straight up Epsom Salts (Magnesium Sulfate) with no perfumes or additives. I did this twice a day for months and it really helped. I still do it regularly, it helps clear out irritations. Use the timer on your phone and do one morning and night for 15 minutes.

This is kind of gross but something else that has helped is wiping with purell after Bowel Movements. I just put a couple pumps on the TP. I think one reason that area is so problematic is all the potential bacteria. Keeping it clean and dry with sitz baths and purell has actually helped me. At least my a-hole heals now.

Share this post


Link to post
Share on other sites
Bluevibes
My Ob's switched to my rectum after two years. At one point the OB's were so chronic that the skin never completely healed...I still have OB's there but I can get the skin healed and keep it from getting worse. SITZ BATHS...it's about the only thing that ever helped me in any way. You can get one at the drug along with some Epsom Salts (which I get at the dollar store) just get straight up Epsom Salts (Magnesium Sulfate) with no perfumes or additives. I did this twice a day for months and it really helped. I still do it regularly, it helps clear out irritations. Use the timer on your phone and do one morning and night for 15 minutes.

This is kind of gross but something else that has helped is wiping with purell after Bowel Movements. I just put a couple pumps on the TP. I think one reason that area is so problematic is all the potential bacteria. Keeping it clean and dry with sitz baths and purell has actually helped me. At least my a-hole heals now.

Thanks good info ill def try

Share this post


Link to post
Share on other sites
Ihaveittoo1975
Hi there, I was previously going through a similar situation in terms of my symptoms up until recently, and I totally understand how emotionally taxing it can be. For me, my constant prodromes stopped when I started on suppressive therapy, however it did take some time for it to kick in. How long have you been on the suppressives? If it continues, don't give up hope! I remember the utter terror I experienced when I thought that I may never be rid of these irritating symptoms for the rest of my life. But I kept pushing, and found something that works for me. I feel totally confident that you will too, even if the suppressive therapy isn't the best route. Read through some of the other posts on here, many people who have had problems with neurological symptoms have been able to alleviate their suffering using a range of different methods, from anti-depressants to accupuncture, and theres something out there that is going to work for you too. Do not give up hope. One day, hopefully sooner rather than later, you will be symptom free. Keep your chin up, and God bless.

I haven't really had issues with prodomes, just coming and going slight discomfort in lower abdomen, but six months into having this crap I was experiencing basically constant obs. I have been going through a very stressful stretch of my life so that probably has been part of the cause, but I finally decided that enough was enough. I went on daily 500mg Valtrex and it appears to, if not completely prevent obs, at least make it better.

How long did it take for you to notice any difference after going on suppressive?

Share this post


Link to post
Share on other sites
reallydepressed

I also have daily prodrome symptoms, it is around my mouth and inside my nose. Literally everyday I feel the burning/pain, it feels like my body is constantly fighting off a cold sore. I've been suffering for 10 years.

Share this post


Link to post
Share on other sites
Berliner

Same here- nearly constant OH prodrome for 2 years. Valtrex does seem to reduce but not eliminate it. Hearing about some of you that have had this for 10 or 12 years is really disheartening.

Share this post


Link to post
Share on other sites
WilsoInAus

@Berlineryour condition is most likely not herpes. It sounds a lot more like a pelvic nerve issue. Have you attempted to diagnose this?

Share this post


Link to post
Share on other sites
Berliner

Have I attempted to diagnose it? Actually I have spent thousands of dollars on testing and doctors, not to mention dozens of hours reading journal articles and forum postings. My only reasonable takeaway is that my symptoms are definitely caused by OH.

I don't know why so little credence is given to people who report having constant prodrome. Even on Terri's forum, when people say they have constant prodrome she seems to always doubt it's something caused by herpes. I am really not sure why.

It's funny how knowledge progresses. Not too long ago the consensus was that you couldn't pass the virus if you didn't have a lesion. Maybe not too long from now we'll hear, "oh yeah, turns out a lot of people have constant prodrome caused by the virus."

Share this post


Link to post
Share on other sites
WilsoInAus

This is because there is no such thing as constant prodrome. Prodrome refers to symptoms that occur in the hours before an outbreak. If an outbreak does not occur, then by definition, it isn't prodrome. People who have strong symptoms of herpes around outbreaks experience immense to complete relief from antivirals, they are that effective.

You reading will have told you that most people with your symptoms actually have a separate issue, usually a nerve issue within the back or pelvis.

You have the benefit of testing that suggests you do not have herpes. When all evidence points to you not having herpes, nor is there any additional treatment for herpes, why is it still reasonable to assume you have herpes? Most people will keep searching for a true cause to treat.

Share this post


Link to post
Share on other sites
Constant Diplomat

Well I had crazy nerve pain for a month after my diagnosis. Famvir didn't stop it.Three days after trying Valtrex out it was gone.

Share this post


Link to post
Share on other sites
Free73

I don't want to sound like one of those doctors that says 'stop worrying, it's just a skin rash'. But i'm convinced that 50% of the battle with herpes is a mental one, possibly more.

If herpes is constantly on your mind, then your mind will play tricks on you and you will take everything you feel in your body as 'prodrome'. I'm not saying it doesn't happen, but what I do know is that the more you think about it, the more you will think you are having symptoms.

When you take suppressives, you are in a constant state of worrying about it because you are reminded every time you take a pill that you have herpes. Perhaps try and get off the suppressives and just go about your daily life. If you get an outbreak, let it come and go. The reality is that herpes doesn't really affect your quality of life from a physical perspective, but it does affect it greatly from a mental perspective.  That's why this virus is more a mental game than it is a physical one.

Please take a look at this video created by Pain Australia. It might give you a different perspective on what you are going through.

 

 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

  • The Hive is Thriving!

    • Total Topics
      69,563
    • Total Posts
      468,604
  • Posts

    • viralfrog
      I would not be the first one, plenty of others here on the forum who get recurrent OBs despite heavy doses of antivirals. The blisters appear exactly in/around the spot where I had my first OB 4 years ago, plus all the symptoms I have are those commonly described as HSV-2 symptoms. In my opinion, it's a clear case.  But your suggestion is definitely an option that should not be ruled out. I'll wait until I get a bad enough OB again so I can go get another swab test. The outbreak needs to be bad enough to be able to break the blisters to get the liquid from inside right? I recall hearing something like this when I got tested years ago. The doctor used a swab that had tiny needles on it that would pop the blisters open. Do you know if this is right, i.e. you will not get a positive swab just from a mild OB / redness? 
    • jreemi
      90% elimination of the latent virus in thr ganglia probably will be a functional cure. Sure the small remaining amount can reactivate, but thete is a viral load threshhold for transmission. More than likely that won't be enough to cause transmission, or enough shedding for transmission. Damage enough of the latent virus and we are good to go. There is already a Crispr trial on humans going on right now https://newatlas.com/crispr-trial-underway-vertex-gene-therapy/58643/ So we are just waiting on Keith Jerome's lab and Excision Biotherapeutics to begin their trials. I've beem following Crispr for years now, and it keeps gettimg more accurate. I believe researchers at Duke have recently made a big breakthrough on accuracy, by changing the level of regulation instead of cutting DNA. I wonder if these labs collaborate with others such as Jerome's?
    • WilsoInAus
      No need to be tired at all, I'm sorry of you cannot accept the facts surrounding testing, but here they are. Your note is full of inaccuracies so let's iron those out. I don't need you to believe anything, I am just putting the facts out there. Here's a few studies: https://jcm.asm.org/content/37/5/1632 Here we have 29 patients with recent HSV-2 infection... 100% turned positive, 0% false negatives. https://jcm.asm.org/content/36/3/845/figures-only Here we have over 1,000 positive samples from people who have swabbed positive and compared to three different blood tests - over 95% accurate. https://jcm.asm.org/content/26/4/662?ijkey=9ebe349f98ed94f019ed788604c8fa19864a2c7e&keytype2=tf_ipsecsha Here we have 76 people who swabbed positive, the Westernblot detected 99% and an immunoblot 96%. Can you elaborate what is vague about these items of research. I'm sure now you'll want to review the references to these papers where you'll find even more. Some of them are in easy text for the beginner. So you stand corrected, it is in fact your comments that are spreading misinformation. That is not tolerated on this website. Also what nonsense that people do not get lesions to swab upon infection? Where did you read that? Hello Dolly? I'm afraid it is back to the books for you to do some more research before having such a rambunctious spew like above. STOP IT - we are all tired of your unsubstantiated drivel. This is 2019 we want something tangible, something real, something sound and wholesome and not drooling rants equal of the park bench antics of the drunks at 2am Sunday morning! I will NEVER stop because no matter how immature, how bombastic, how fantastic, how inaccurate, how frivolous, how false the spew that ends up on this website - the TRUTH will always be the light, the love, the guidance, the deliverance and the justice... no matter how many capitalised swear words are thrown!
    • Talx2520
      I took an IgG blood test 6 months after the episode. HSV-2 was negative (less than .91) and HSV-1 was high at 3.18
    • RainyDay2
      My comment was about THE BLOOD TEST!  You’re 95-100% accuracy for it?  Garbage.  Pure garbage.  You might as well have pulled that number out of your ass. Google search HIV accuracy... almost every medical site will tell you 4th generation HIV testing is as close to 99.9% percent you can possibly get after a certain period of elapsed time.  They will pretty much GUARANTEE you that you are indeed negative if you have a negative test. That defined certainty of accuracy WILL NOT AND CAN NOT be found for HSV blood tests.  You get vague descriptions of it’s accuracy from almost every site you visit.  NO CERTAINTIES.  Thousands of us on these forums KNOW the test isn’t accurate. When your score is between 1.1 and 3.5, this could be a false positive.  Certain sites list almost 1 in 2 tests can be false positives.  50 fucking percent!! And you want me to believe the test is 95-100% accurate? How come so many sites also seem to dance around the possibility of false negatives?   All that isn’t necessary in HIV testing.  Because if YOU DO get a low positive, the confirmatory HIV test checks for the actual VIRUS in your system.   And there are almost NO FALSE NEGATIVES.    NO HSV BLOOD TEST CAN DO THAT! Not even the Western Blot.  At the end of the day, it’s just a more detailed look at antibodies.  And many sites will tell you a “small” number of people may never develop. How small are we talking???? That can be any number.   Trash. And again, a large margin of people with herpes DO NOT GET LESIONS to be swabbed.  Google tells you that.  If majority of herpes infected have nothing to swab,  well that pretty much makes PCRs and cultures worthless for the most part doesn’t it?  If there is nothing to swab after a year, in your words, you are clear of herpes. BULLSHIT! So Wilso, just stop it.  You have never done scientific testing in a lab yourself on herpes. You are not a doctor.  You are constantly telling people false information.  Assuring them of promises you have no authority to make.  I’ve seen you do it time and time again.  Do you have regrets???????????  Im tired of your lies.  
×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.