Constant herpes outbreaks

[Lucia22]

Hey 

I am hoping someone can help with what may be going on here cos I am at a complete loss! I have HSV2 and have done for around 14 years now. 

first 7 years no outbreaks at all after the horrific first one.  Around 2015/16 I started getting monthly outbreaks around my period I didn’t take any suppression for almost two years  and just treated episodically. 

2018 I started suppression at first ayclocivior and have also been on 1gram valtrex… I started getting chronic nerve pain around this time, the anti virals stopped the outbreaks but did nothing for the nerve pain. 

fast forward to now  my outbreaks are going absolutely crazy I have had 6 outbreaks since 5th July and they are coming weekly, most time I’ve had in between with no outbreak has been 10 days. And I am on suppression.  This has never happened to me before even when not on suppression let alone when on it. 
 

ive had blood work done an tests for all other STDS including HIV spyphillis and hep c all of which has come back negative. I am waiting the results of a general health blood screening also. 
 

The only anti viral I haven’t tried is famvir but from what I’ve read if valtrex isn’t helping me then this is unlikely to help? What could be going on here? I haven’t changed my diet, not under any extra stress I don’t get it  

[Flowerteacher55]

Hi!! 

First, I am so sorry that you've been experiencing the nerve pain and these weekly outbreaks. That is so stressful. You don't deserve this at all! 

Second, it is great that you've already gotten tested for other STIs, and have gotten a general blood screening. 

Herpes is such a unique virus in that it lays dormant for years, or is rarely active, and then suddenly is active without rest. 

you said you've been getting them in sync with your period, which could indicate hormones as a trigger for these sudden outbreaks  have you gotten your hormones checked? Could you be pregnant or are you going through menopause or perimenopause?

Have you had any new sexual partners recently? Changes in sexual activity or friction can also trigger outbreaks.

If the Valtrex is helping with the outbreaks, it would seem to be doing its job. However, you mentioned you've been on supressents since 2018 and the nerve pain hasn't stopped. That indicates an issue, perhaps unrelated to the herpes. Have you been checked for Lyme disease or post-herpetic neuralgia? If the nerve pain continues to occur and not stop even when you don't have an outbreak, you may need an additional medication to help with the nerve pain, or if it's post-herpetic neuralgia they actually do an IV of antivirals (it's super interesting!).

To get the outbreaks under control, you hypothetically could try the famvir, but I would consult your OBGYN or a virologist (you can get a referral from your PCP) or, maybe visiting a clinic such as Planned Parenthood may help you, too, as they specialize in STIs, especially for those affecting the vaginal area.

I hope this all helped in some way.

Please know you are not alone. So many others, especially on this forum, have experienced chronic nerve pain, so I recommend you getting examined/tested for the post-herpetic neuralgia or other herpes-linked neurological conditions. Please know there is hope!!! ❤️

In the meantime, stay well. Take care of yourself, use lysine cream if it helps, wear loose clothes, etc. Take notice of anything; it may be helpful to record changes or observations in how you feel in a journal so your doctor or OBGYN or whomever can better examine any possible patterns in the outbreaks and how the virus is presenting itself. Also, it may be helpful to take note of your PMS and menstrual symptoms and heaviness of the flow, in case the outbreaks are hormonally linked. 

I really hope that you get better soon. I am praying for you!! ❤️

Blessings,

Grace

 

[Lucia22]

@Flowerteacher55 hey thanks for your reply 

I got the results of my general bloods yesterday and all is fine perfect actually. Only thing that was slightly low was b12 

in regards to hormones I have poly cystic ovaries, I am not  menopausal my blood tests yesterday included hormonal tests and they were all fine for my age ( i am 31) despite the poly cystic ovaries but I already knew about that and have done for years. I am 100 percent  not pregnant 

my outbreaks were related to my periods but i should  add they aren’t anymore and they come at various times through my cycle. 

I haven’t had more sex lately I am totally unable to have sex as I am not just experiencing  nerve  pain lately I am now getting sores weekly. So more sexual  activity is not the reason for this.

I live in the U.K., we have the gum clinic which is the same as planned parenthood. I have an appointment next week to discuss famvir but she is  reluctant to give this to me. Also I don’t know if it’s the same in the US but jere  in the  U.K. doctors do  not  care  if you get nerve pain etc unless you have visible sores they pass the pain off as something non HSV related. 

 

[Flowerteacher55]

Hello!  

First, yay! I am happy to hear that your blood tests came back great. Low B-12 is actually pretty common, but B-12 is responsible for cell energy and productivity. Also, having low B-12 can affect your overall energy levels, too! However, there are vitamins you can take (I take a B complex vitamin since I am vegan). 

Second, I am so sorry that you have been struggling with these extremely frequent outbreaks. I am located in the US, but even here regionally herpes is treated differently, and in some areas of the country Planned Parenthood or other reproductive health clinics are basically nonexistent. 

Similarly, some people have such a hard time getting their doctors to prescribe anti-virals without physical lesions being present (which is absurd, considering the medication does so much more than just lessen the severity/likelihood of a physical outbreak). Hopefully the clinic helps you out, and if not, we can think of other ideas of wither how to obtain medication from a doctor or if there are any medications hey can provide to help relax the nerves. It is not okay for them to just let you suffer in pain! That is not doing your body or your mental state any good 😞 Plus, being in physical pain leads to stress on the body and mind, which can actually cause outbreaks to occur! Plus, the tingling could either be from neuralgia linked to the herpes (post-herpetic neuralgia).  

Remember, it is okay to be a little tough when advocating for your own health. You are the patient, your voice and opinions matter. The doctor-oath is to "do no harm," but by literally doing nothing to help you they are just allowing your suffering to persist! 😞 Not okay!! Advocate for yourself ❤️ , you deserve it!!

Stay strong!! Let us know how your appointment goes. 🙂 

Blessings,

Grace

Also, A Shout-out to H-Opportunity Users based in the UK: To users in the UK: since you are located in the U.K., maybe you could offer some advice to help our friend here!!  🙂 Offer your support or advice in regard to the clinics based in the UK. Thank you! ❤️ 

[Lucia22]

@Flowerteacher55 thank you for your kind words 

it is just so hard to get my head around why the first 7 years of this virus I wasn’t experiencing  outbreaks at all and I wasn’t even on anti virals and now it gets worse and worse. it’s so depressing in all honesty.. the nerve pain is daily and every health professional dismisses and says it’s not related to HSV even Terri Warren  said this on her forum I paid to ask her a question 
 

I don’t  have any issues getting acyclovir and valcylcvior but they aren’t working anymore and I want famvir and the doctor said ‘ I’m not willing to prescribe such an expensive anti viral without checking your skin first’ it’s like they think it is all in my head. 
 

also I live in London so the clinic I go to is well known and has several h specialists.. I have also paid privately to see a top STD doctor , she is one of the best in the country and she basically told me nerve pain isn’t related and the val at 1 gram will suppress .. well it isn’t anymore so what is going on! 

[Flowerteacher55]

@Lucia22 Oh my gosh I would be so frustrated!  You have invested money and time into this, and still people are not willing to work with you. Also, frankly it would be you who would be paying for the antiviral, not the doctor, so why the heck would they be so unwilling to prescribed an "expensive" drug? If it'll help, it's worth it!  The pain interferes with all aspects of your life. 

Hypothetically if it isn't from the herpes... you said they checked blood work. Did you get a physical exam to see if it is spinal-related or a muscular/pinched nerve issue? There are back pain/spinal issues that affect women more than men, since the pelvis is not fused in women and the spine is more curved. Did they offer any suggestions as to what it could be if not herpes-linked? They can't just say "well it's not this, bye, have a good day" and not tell you what it COULD be! Ugh! 😠 I am so sorry you have to deal with these sassy chumps!  

In the meantime, take care ❤️ We are here for you!! ❤️ 

[Ebelskiver]

Hi Lucia22,

I joined just so I could respond to your post. I’m a nurse practitioner who works at an STD clinic and I treat many herpes positive patients as well as being GHSV2 positive myself. One thing I’ve begun to notice in my patients who have been on long term or high dose antivirals is that the antivirals seem to increase or cause intense neuralgias and prodromal symptoms. I myself had this happen. I thought my herpes was acting up as I was having relentless prodromal symptoms that would even present in my arms and chest. I stopped the antivirals and was amazed when the neuralgias went away. 
 

There are no studies backing up this anecdotal evidence but it may be worth it to just try to stop the antivirals for a bit and see if at least some of your symptoms resolve. 
 

Good luck!

[Flowerteacher55]

Hi, @Ebelskiver!

Thank you so much for being an essential worker, and for taking the time to join the (H)Opp Community and provide insight and advice!! 

Your work as an RN at a clinic is so appreciated. You are a blessing! Thank you so much for all you do. The world is so blessed to have you. You are needed and appreciated! ❤️🌎🌻

Blessings!! ☀️🌄🌻

[Flowerteacher55]

Hi friends and @Lucia22!!

I just wanted to reach out and reccomend that before stopping any antivirals or medicines, always talk to your OBGYN/PCP beforehand. That way, if you experience and side effects, your doctor will be aware and know how to help you in case of any serious side effects. 

Another hidden gem-- pharmacists!! Pharmacists are skilled at understand how medicines interact in the body and with other medications you may be taking or will be taking in the future. My brother is highly allergic to penicillin, and a pharmacist actually saved his life by knowing the composition of drugs!! Although the doctor prescribed him a drug and my brother was about to take it, the pharmacist called us and told him not to take it, since it was penicillin-based (he knew my brother was allergic to penicillin since the pharmacy had a pop-up in the computer that warned of allergies)!! 

Anyways!! May you all be blessed ☀️☺️

-- Grace

[Ebelskiver]

9 hours ago, Flowerteacher55 said:

Hi, @Ebelskiver!

Thank you so much for being an essential worker, and for taking the time to join the (H)Opp Community and provide insight and advice!! 

Your work as an RN at a clinic is so appreciated. You are a blessing! Thank you so much for all you do. The world is so blessed to have you. You are needed and appreciated! ❤️🌎🌻

Blessings!! ☀️🌄🌻

Hi!

Just to be clear, I’m not an RN. I’m a nurse practitioner. Which means I’ve had advanced, Master’s level training and am allowed to diagnose, treat, and prescribe medications for any disorder I run across in the STD/family practice clinic I work at. I’ve also worked in emergency medicine, where I ran across herpes fairly frequently as well. 
 

Checking with your practitioner before starting or stopping meds is always a good idea! However, there are no contradictions to stopping antivirals for genital herpes infections like there are for, say, a viral meningitis or a herpes keratitis. 
 

Anyways, it’s an option to explore. As is getting on one of nerve pain meds such as gabapentin, amytriptiline, or Lyrica. One thing I’ve discovered about medicine in my almost 20 years of practicing it is that there’s a lot more guess work and trial and error than people think. I’ve found this particularly true with herpes where the average practitioner knows surprising little about the wide variability of symptoms that exist. 
 

Thanks for the reminder to check in with your practitioner and have a healthy day. 

[Flowerteacher55]

Hi, @Ebelskiver!!

I am so sorry I got your title incorrect! My apologies ❤️.  

Thank you so much for your work in the medical field, and thank you for joining the forum ❤️. It's so awesome to hear from a practitioner who has experience working with HSV, especially since so many people with herpes often have to go from clinic to clinic to find support and/or someone who is familiar with the range of herpes effects, treatments, and symptoms. So many friends on here have been told "there's nothing else we can do," when someone is experiencing neural issues or excessive outbreaks, so thank you for providing possible options for treatment! 

Welcome to the (H)Opportunity Community! 🙂 

Blessings! 🌄

Grace

 

 

[timmy]

Hi @Lucia22  

Great post and I am sorry what you are going through. I was going to post that I too am going through the same thing and it’s incredibly frustrating! Hope you don’t mind adding my story to your thread. 

 

I was diagnosed with Genital HSV 2 and had a serious outbreak so have been taking famvir for a number of years now as a preventive provided by my Dr in Australia after he decided that the medication worked better for me.  Possible too long circa 6 years however. 

 

Fast forward to moving to Paris, France late 2019 and go to the doctor for anti virals and she tells me here you can’t get anti virals them unless you have a number of outbreaks. I think “ok why not go off then”. Timing wasn’t great with the start of Covid in May 2020 and I had a serious out break on my butt cheek and right thigh! Lucky I had some anti virals saved just in case which helped at the time. Weirdly the virus has found a new pathway to new parts of my body. 

 

Since then I have been on acliclovir and have been having repeated outbreaks alternatively on my  butt then thigh about every 4 weeks. The Lastest (current) outbreak on my thigh is the worst I have had and very painful and quite a large area   for last 6 months I have had this hamstring pain which comes and goes. Very similair symptoms. 

 

Sorry for high jacking this thread but seems some people on here have or can offer some good insight as to this.  

 

I have had no genitals outbreaks during this time either! Which is even weirder, just in right leg and left upper butt check 

 

Having trouble here in Paris getting a proper answer or suggestions. Blood work all good just low b12 also.  A specialist at the sexual health clinic told me to relax and maybe consider moving back to New Zealand!!! Very frustrated by that response 😬

 

Another reasons for high jacking this thread is that we are moving to London soon (September) so I am keen to engage and talk to a specialist so welcome any clinics or private practice anyone can suggest. Will be based in SW London. 

 

Thanks all and again sorry for high jacking this thread. I hope you find some answers and relief soon.

[Flowerteacher55]

Hi, @timmy!

I am so sorry to hear about your struggles. You don't deserve that at all! 

You didn't hijack the thread at all! This is a space for all to vent and support one another, and you deserve support and a space to vent, too! ❤️ 

It's great that your doctor gave you famvir because it worked better for you. I am so shocked by the unwillingness of medical professionals in other countries not being willing to accommodate your health needs! That is so frustrating, and frankly it seems unethical, considering your body is accustomed to receiving a specific treatment that a new doctor is unwilling (or unable, depending on medical law in France) to provide you. 

It sounds like these new outbreak changes could be due to the switch from Famvir to the Acyclovir. Have you been able to contact your Primary doctor back in Australia? Also (and this may sound very odd) but since you are a  citizen of Australia, do you think the Australian or New Zealand embassy would be able to provide you with support or advice on how to receive Famvir and similar medical treatment as you experienced previously, in France?   

I am not a doctor, but maybe the outbreaks have moved to a new location because it had an opportunity to migrate neurologically since there was a change in the medication, especially if you did not take any antiviral suppressants at any point in time during the transitional phase between medications. Since herpes lives in the root ganglia (ball of nerve at the base/tail of the spinal column) the nerve pain can shoot to the body parts that are near it, such as the thighs and buttocks, and this can also cause the outbreaks to migrate to those locations as well.

I am so sorry you have been experiencing this!  The audacity of the one medical person who said you should move back to New Zealand 😑 ... like excuse me but I came here to see you for medical help, not for travel and real estate advice, thank you very much! 

Moving to the UK sounds exciting! Many users on the site are based in the UK, and they can provide some advice on how having herpes in the UK is different than other places. From what I have heard, it is also difficult to receive antivirals unless a physical outbreak is showing, but definitely friends from the UK can verify this and answer other questions you may have! 

Another option I was just thinking about was getting your medication shipped to you from your doctor. I know that some college students who are abroad or live away at college get medications shipped to them, so perhaps there is a way you can get your medication shipped to you so have a safe supply and it is the medicine that works best for your body. 

In the meantime, be kind to yourself and take care. Ice packs may help with the nerve pain or to soothe the sores, and also try to avoid sunshine from reaching the sores on the thigh, as this can make them worse.

I am sending you prayers and blessings! ❤️ Feel free to reach out or post questions if you need answers or support 🙂 We are here for you! You are not alone ❤️.  

-- Grace

P.S.: Friends in the UK, any advice you have to prepare our friend here for life in SW London, please share! ❤️ 🙂 Thank you! 🙂 

 

[HJewel2]

Hi, I’ve had almost this exact experience for the last six months. Have had it about 6 years no problems before now. Totally bedridden now. I have finally been referred to an immunologist who has increased my antivirals and is doing a full blood panel. I would encourage you to push for an immunologly/infectious diseases referral. I am in the UK aswell, I have been passed from STI doctor to STI doctor and been left like this.

Solidarity.

[Flowerteacher55]

Hi, @HJewel2

I am so sorry that you've been suffering form this. It's great that you've been referred to an immunologist.

Seeing doctor after doctor definitely wasn't helpful, and I am so sorry it has taken this long for you to finally be referred to see a specialist. 

Thank you for your wise advice to push for a specialist now, before things get worse. Thank you! 

If you need any support or need to vent, please feel free to direct message me or just post on the forum. We are all here for you! ❤️ 

Sending blessings and prayers your way for health and progress ❤️ 

Blessings,

Grace

[RookieBex]

Hey Lucia,

I am also dealing with constant outbreaks for the last 11 months. I did give birth to my first child a year ago, so I am chalking it up to the fact that a trauma happened to my body, but I’m just so confused as to why it’s still happening now. I totally feel like myself again, no longer breastfeeding or anything so my body is back to normal. 
 

I was diagnosed almost 7 years ago and the first 5.5 years I barely had any, to the point where I forgot I even had it to be honest. I have been on 1g of valtrex daily as well, but it’s definitely not helping me the way it used to. I tried Famvir with no luck too. 
 

These outbreaks are far worse than my initial one. I too am left confused and sad. You’re not alone, but I just won’t accept that this will be our life forever. This virus is a tricky little bugger, and it just shows face when it wants to and I’m hoping for both our sakes, it’ll go back dormant.

Keep your head up. Here for you! 

[Flowerteacher55]

Hi, @RookieBex!

I hope you are doing okay.

Congratulations on having your first child! What a blessing ❤️ 

I am so sorry about your outbreak struggles. Please know you are not alone! We are here for you ❤️ 

The sudden outbreaks may be due to changes in hormones, which could have been brought on by the pregnancy and then childbirth. Pregnancy hormones for 9 months and then the change of suddenly not being pregnant after childbirth may have triggered some changes in your outbreak patterns. However, as you said, you gave birth a year ago and you are no longer breast feeding, so it is frustrating that these outbreaks are still occurring.

Have you considered getting your hormone levels checked to make sure that everything is back to pre-pregnancy levels? That may help check off hormones as not being the potential cause. 

I love your positivity and outlook! Yes, this won't be your life forever! Good things are happening everyday, and progress is being made (even when we can't always see it)!

Stay strong. We are all here for you! ❤️ 

Blessings,

Grace

 

 

 

[Ebelskiver]

I wanted to post again to talk about antiviral resistance, which is becoming increasingly common. If you are resistant to one antiviral you are most likely resistant to the major 3, valtrex, famvir, and acyclovir. If you are having continuous outbreaks despite being on antivirals then you are likely resistant. This needs to be confirmed via a viral sensitivity test. There ARE other options!

Most doctors don't know much about herpes and may be at a loss for how to treat resistant strains. Some options are 

IV Foscarnet, Cidofovir, Imiquimod, and Pritelivir are all drugs for resistant GHSV2. 

Interferon 2a may be an option as well, it is mainly used in Russia to treat recurrent GHSV2.

I hope this gives you some options to discuss with your doctor.

 

Good luck!

[timmy]

Hi everyone. Seems to me that resistant may become more of a thing considering most of us are taking anti virals. Definitely keen to learn more and until now have just taken famvir as the doc has told me too. For a few months I was taking only 1 a day. 
 

my outbreaks did start up when I stopped taking them but since then it’s just slowly getting worse - each outbreak a little more painful. 
 

Today I finally found a doctor to take me seriously and he took some scrapings of my leg and sent them to a specialist lab in paris to test for ani viral resistance. He did seem to think it was possible given the monthly repeat outbreaks (one month leg, next month butt cheek). 
 

I will report back anything that seems useful to share with the group. 

[Ebelskiver]

I think resistance will continue to become more and more of a problem. I’ve been on suppression dosing of valtrex for over a year and had a recent OB that was unresponsive to it. If you are resistant to valtrex you will also be resistant to acyclovir and likely Famvir as well. 
 

Your doc did the right thing by testing for resistance. If you are resistant  there are other options. 

I’ve copied and pasted the below from Medscape, a peer-reviewed resource I use in my own practice. 

Treatment for acyclovir-resistant genital herpes:[9] Foscarnet (40-80 mg/kg IV q8h until clinical resolution is attained) is a DNA polymerase inhibitor unrelated to acyclovir and its congeners that is available only for intravenous use and has been compounded for topical use.

 

Cidofovir 5 mg/kg once weekly, an acyclic nucleoside phosphonate, is also available intravenously and can be formulated for topical use or 

Imiquimod is a topical alternative, as is topical cidofovir gel 1%, applied to the lesions once daily for 5 consecutive days.

Pritelivir, a new helicase-primase inhibitor that is unaffected by thymidine kinase deficiency and is available in oral form, is currently under study.

There are also immune modulators that may help such as Interferon 2a. Although this would likely need to be prescribed by an immunologist.

There IS hope for resistant HSV. Unfortunately most primary care specialists are not informed on these latest treatments.

 

[Flowerteacher55]

@timmy Hi!! 

I am so happy you got a doctor to be respectful and take you seriously! The skin sample being tested for resistance is a awesome, let us know what happens! I am praying for you ❤️☺️!

@Ebelskiver Hi!! Thank you SO much for that priceless advice on resistance and information that we can bring to doctors who may not be familiar with how else to help in regard to resistance. You are such a blessing. Please know that you are so valued by this community ❤️. Thank you for answering questions, providing data and advice, and for being here for us. Thank you so so SO much!! I am sending you prayers and happy energy ☺️🌼🌄!! 

 

[timmy]

Hi all. Back from a weeks leave but still no test results. Will hopefully know end of week. 

[timmy]

Sorry repost as hit post too early. 
 

@Ebelskiver thanks for the information. It’s seems those options are all IV only- guess not that practical but at least other options if I do turn out to have developed Drug resistant strain. 

Find it weird that I get repeated outbreaks now only in ew locations. It’s been a number of years since I had any outbreak in the genital region so not sure why only new areas on body.  However each new outbreak is causing more pain for longer in the region which is slightly worrying - but more annoying than anything.  
 

On another note my GP wants to send me to a internal doctor (Specialist here in France who has more advanced training in some areas) to help with diagnosing what is going on. She suspects it’s immunological but is going to wait until results come back for drug resistance. But nice they are now listening to me and taking some action to help. 

[Flowerteacher55]

Hello @timmy!! 

It is SO great that the specialist is actually listening and trying to help you!! ☺️ Remember to advocate for yourself and demand excellence! 

I hope you've been feeling better. I'm so sorry that the new outbreaks cause pain and annoyance! 

it will get better 🌄. Stay strong. We are here for you.

sending prayers and blessings your way! 🌻

[timmy]

So to follow up on this - I received my results and they were negative meaning I don’t have a resistant strain of HSV2. 
 

although part of me is happy, another part of me does not understand why I keep having out breaks on my hamstring then a outbreak on my butt check - so every 2 weeks one or the other 🙄
 

Can anyone share any causes from experience. I really don’t think it’s stress. 
 

i have had a entire range of blood tests and the only aspect that has presented twice is low vitamin b12 (just under the 136pmo/l or 184 pg/ml. I also have lowish TSH 0,781 mUI/l but within normal ranges. Can’t see how this would activate HSV2? 

otherwise about 30 different tests are all normal and within normal ranges.  My GP suspects a possible “immune condition” but that’s all I have.