Jump to content

Daily Antivirals Aren't Working


Recommended Posts

Hi Everyone.

Tests are being done. Things are in the works. In ALL OF OUR LIFETIMES we will see a cure. They are close. Give it a year perhaps 2 even 3.

Manage thyself. Stay clean. Healthy. BE POSITIVE.

All of us are holding hands through this site. Remember to donate to the FredHutch institute for HSV research.

 

  • Like 4
Link to post
Share on other sites
  • Replies 55
  • Created
  • Last Reply

Top Posters In This Topic

  • MedicalMystery

    8

  • hk81

    7

  • horseygal

    7

  • whereismyanswer

    7

Top Posters In This Topic

Popular Posts

Hey, I'm sorry to hear you are going through this.  I'm one of those people Valtrex did not work on.   I personally had terrible experiences w dermatologists, and would recommend an allergist/imm

Hi Everyone. Tests are being done. Things are in the works. In ALL OF OUR LIFETIMES we will see a cure. They are close. Give it a year perhaps 2 even 3. Manage thyself. Stay clean. Healthy.

you are correct, hk81, valacyclovir and famciclovir use basically the same method of inhibition.  If valacyclovir isn't working, it's unlikely famciclovir will either.  I have tried both with the hope

MedicalMystery

@CHT

I am so sorry.  If you can try raltegravir, that might be an option.  I am on that currently with high doses of lysine.  I also supplemented with Vitamin C until it kicked my immune system into autoimmune overdrive.  No doctor should leave you in the lurch.  It's about quality of life.

@hk81

Thank you for the link.  I qualify bc I have borderline NK cell issues, so I will attempt to mention it to my immunologist next visit.  Fingers crossed...

  • Like 3
Link to post
Share on other sites

I have not heard of raltegravir.  I will look into it and talk to my doctor.  Thanks very much "MedicalMystery" for the suggestion.... I'm trying to stay hopeful.  

  • Like 1
Link to post
Share on other sites
9 hours ago, MedicalMystery said:

@CHT

My former immunologist did research work on its effectiveness.  If you would like to refer your doctor to his work, I can send you a link!

Can you send that to me, too?

  • Like 1
Link to post
Share on other sites
On 6/4/2020 at 2:12 AM, MedicalMystery said:

@CHT

My former immunologist did research work on its effectiveness.  If you would like to refer your doctor to his work, I can send you a link!

Yes, please.  I have a great primary care doctor and he's open to looking into other options including raltegrivir.  I spoke with him yesterday and he is not familiar with this drug so any information you can share would be great.  thanks very much!

  • Like 1
Link to post
Share on other sites
whereismyanswer
On 5/28/2020 at 2:01 PM, LMH10 said:

Just wondering if you have tried anything else at all or just your current medications?

I’ve tried acyclovir- which actually worked better with episodic therapy. I would take 800mgs every 8 hours. However when it came to moving to a suppressive therapy option, they only allowed 400mgs every 12 hours and that didn’t work for me. i still had outbreaks as usual. 

  • Like 2
Link to post
Share on other sites

How often do you have outbreaks in 1 month?

Which kind of outbreak? Full blisters until they become crusts? Or only irritation / burning?

I have also started to follow the same suppressive therapy, but I don't see any improvement at all. I don't reach the ulceration stage and I develop blisters only a few times. But I have all sort of immune responses that are very visible and unpleasant.

I believe that, also in the case of a trigger of the immune response, there should be a full virus detected by the antibodies in order to cause the trigger. So it means that the therapy is not managing to suppress the replication well enough.

These are just my assumptions.

I have tried also episodic treatment with valacyclovir 500mg right before a possible trigger, but some hours later I still had bad symptoms.

 

  • Like 1
Link to post
Share on other sites
whereismyanswer
35 minutes ago, hk81 said:

How often do you have outbreaks in 1 month?

Which kind of outbreak? Full blisters until they become crusts? Or only irritation / burning?

I have also started to follow the same suppressive therapy, but I don't see any improvement at all. I don't reach the ulceration stage and I develop blisters only a few times. But I have all sort of immune responses that are very visible and unpleasant.

I believe that, also in the case of a trigger of the immune response, there should be a full virus detected by the antibodies in order to cause the trigger. So it means that the therapy is not managing to suppress the replication well enough.

These are just my assumptions.

I have tried also episodic treatment with valacyclovir 500mg right before a possible trigger, but some hours later I still had bad symptoms.

 

I have outbreaks 1-2 each month. they’re mostly on the right corner of my mouth. every few months i will get them on the left side of my mouth. on the medication, i have noticed they aren’t ulcerating as severely as they would if i went without treating them. however, they still do appear continuously. 

 

I’ve been trying to get a doctor to prescribe famciclovir, which i’ve heard can have more success. but no doctor will prescribe without further testing. my gp will not change my prescription and hasn’t given me test options though. she has only passed me off to a dermatologist and immunologist. 

  • Like 1
Link to post
Share on other sites

I don't know if famciclovir makes a difference. From the little that I know, it uses the same method of inhibition as ACV. The only difference is that it becomes available in the blood faster and you need a lower amount to get a certain concentration of ACV.

Somewhere I have read that the therapeutic dose of ACV can be raised from 2x400mg per day to a higher amount, if needed. Maybe you can ask about that. But having 1 - 2 outbreaks per month, it means that you would have to ask for a higher dosage for 1 month at least to see any difference..

Anyway, 1st thing, as it was already suggested: if you get fluid filled blisters, you should have at least 1 swab to check if it's really herpes..

  • Like 1
Link to post
Share on other sites

you are correct, hk81, valacyclovir and famciclovir use basically the same method of inhibition.  If valacyclovir isn't working, it's unlikely famciclovir will either.  I have tried both with the hope that famciclovir would work when valtrex stopped working. Unfortunately, it did not.... even if I take a higher dose of famciclovir at the first sign of an outbreak it doesn't make much difference.  I had high hopes of getting into the pritelivir "early access" program but, no luck there either.  I have turned to trying every antiviral supplement I can get my hands on to see if something will help!  

  • Like 3
Link to post
Share on other sites
MedicalMystery

@CHT

@WSX

@hk81

Here's the link to the study on raltegravir.  (You have to either open it in Drive or download).

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.longdom.org/open-access/evidence-that-raltegravir-isentress-merck-a-retroviral-integrase-inhibitor-is-effective-against-2161-0665.1000172.pdf&ved=2ahUKEwjR6dHRme7pAhUXlnIEHfS5DmMQFjADegQIAxAB&usg=AOvVaw2_3d0vJXLo5XpxBfp2wPKq

 

The study was done on NK compromised patients like myself, but that shouldn't influence whether a drug works on HSV or not, and it was safe.  

I don't know what dosing guidelines are for most, but I took 400 mg 3x daily with no adverse effects.  It did not stop my outbreaks, but it lessened them (pencil-sized full ulcers covering my mouth and face continuously), to small ulcers about the size of whiteheads and not as widely spread on my face.  They also healed faster.

 

I now take 800 mg 2x daily bc it spread from my face to genitals, and I am able to tolerate that dose well.  Liver panels are required routinely just to be safe, but it shouldn't be something your doctor would be scared to prescribe to try given its low side effect profile.

I hope this info can help!

Edited by MedicalMystery
  • Thanks 2
Link to post
Share on other sites
MedicalMystery

@whereismyanswer

Seeing an immunologist/dermatologist combo is a good start.  The dermatologist will test for bacterial conditions and probably angular chelitis, but the thing is, even if the test comes back w bacteria, the pustule stage is where cross-contamination can occur.  I have had staph aureus in an infected herpes lesion, so they think it's "one or the other" when it's both.

 

An immunologist will be able to shed some light about any dysfunction that may be occurring.  That was where I got most of my answers from so far.

If your doctor does choose to culture your herpes with a viral swab test, I would recommend NOT having any antivirals in your system at the time of the culture because it can give a false negative.  Even without antivirals, a viral swab test for herpes has such a small window to be taken I think there is an almost 50% false negative rate?

The best time to culture is with no antivirals, when it's just entered the pustule stage.  That's when it has the most fluid in it.   Don't eat or drink anything before the culture if you can help it.  One negative result but other clinical symptoms doesn't mean anything-- sometimes you have to persist.  I only mention all this as another young woman who was bullied and passed around between doctors bc of recurrent herpes.  The more info you have going in, the better. 

 

Please keep us updated!  

  • Like 1
  • Thanks 2
Link to post
Share on other sites
  • 1 month later...
ManagingIllness

You sound like a great candidate for SADBE, which stimulates the immune system, provoking it to behave more like individuals you have HSV but experiencing no outbreaks

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5817593/

If daily suppression doesn't work, SADBE is one of your only hopes. The only other two things that can help are: a) avoiding situations that exacerbate your symptoms, and b) time, which will hopefully cause your immune system to treat the threat more seriously than it currently does.

Be warned, SADBE is hard to get prescribed. It is used as a known alternative therapy for children with persistent warts, and to combat certain forms of hair loss. However, it's used sparingly in both these capacities.

The concerns with SADBE: a) it's uncomfortable, as the application on the skin results in an intense immune reaction (i.e., burning/itching), and b) augmentation of the immune system can potentially lead to unintended results. Of course, the fact that it's used as a treatment for children means to me that the second point is not pressing.

  • Like 2
Link to post
Share on other sites
On 6/6/2020 at 3:38 PM, CHT said:

Yes, please.  I have a great primary care doctor and he's open to looking into other options including raltegrivir.  I spoke with him yesterday and he is not familiar with this drug so any information you can share would be great.  thanks very much!

looks like raltegravir is a HIV antiviral

Link to post
Share on other sites

this sounds familiar, i have HSV2 and have outbreaks monthly and fortnightly when its bad, just unbearable, with sore blisters have used both Valtrex and ACV and they didn't make a difference at all, i am now off all antivirals for 5 weeks and started homeopathy remedies administered by a homeopath, i was breakout free for 5 weeks and now i have had OB after OB after OB for about a week in new places too (one on my thigh) i hope this aggravation is a good sign as sometimes it is a sign that the remedy is working (if anyone is interested PM me and i will share my knowledge on the subject so far)

i even spoke to a herpes specialist at my sexual health clinic (UK) who apparently has written books on herpes asked if i was sure i actually had HSV2 and wondered if i had skin cancer as he said valtrex is supposed to be so good at suppressing it !! think i'll give the homeopath remedy another month and see if things improve if not i'll be going down the route of testing my immune system and seeing if i have a resistant strain! 

love and support to all you fellow sufferers xx

 

  • Like 1
Link to post
Share on other sites
9 hours ago, horseygal said:

this sounds familiar, i have HSV2 and have outbreaks monthly and fortnightly when its bad, just unbearable, with sore blisters have used both Valtrex and ACV and they didn't make a difference at all, i am now off all antivirals for 5 weeks and started homeopathy remedies administered by a homeopath, i was breakout free for 5 weeks and now i have had OB after OB after OB for about a week in new places too (one on my thigh) i hope this aggravation is a good sign as sometimes it is a sign that the remedy is working (if anyone is interested PM me and i will share my knowledge on the subject so far)

i even spoke to a herpes specialist at my sexual health clinic (UK) who apparently has written books on herpes asked if i was sure i actually had HSV2 and wondered if i had skin cancer as he said valtrex is supposed to be so good at suppressing it !! think i'll give the homeopath remedy another month and see if things improve if not i'll be going down the route of testing my immune system and seeing if i have a resistant strain! 

love and support to all you fellow sufferers xx

 

It would be good if u start taking one spoon ashwagandha powder in warm turmeric milk every night. It might do wonders for u along with homeopath. It will take 10 days only to show effect. U will notice a significant reduction in your stress level also. Give it a try!

Link to post
Share on other sites
1 hour ago, Shubhherpe said:

It would be good if u start taking one spoon ashwagandha powder in warm turmeric milk every night. It might do wonders for u along with homeopath. It will take 10 days only to show effect. U will notice a significant reduction in your stress level also. Give it a try!

oh great thank you, i have an appointment with my homeopath today so will ask her what she thinks, willing to give anything a go! have you gone down the homeopath route?

Link to post
Share on other sites
On 5/27/2020 at 9:45 PM, whereismyanswer said:

Hello there. I'm a 24F, who has  had HSV 1 for 3 and a half years now. I got my first cold sore December of 2016 out of no where when I was 21. I was in school and working at a job that had me very stressed at all time. I came home one day and saw the bumps. Initially, I'd never thought anything of it as my dad always had them when I was growing up. Of course, you go on Google and after about 20 minutes of searching, you are absolutely devastated and disgusted with yourself.

The first year after my 1st outbreak, I'd occasionally experience some shedding, but didn't get another breakout until the following year. Since that outbreak, I've pretty much steadily had cold sores every month for the last 2 and a half years. I was told birth control would help, because I was noticing outbreaks begin about a week before my cycle. Didn't change anything though.

Earlier this year, I finally decided it was time to start suppressive therapy, given the fact that I had no success with natural remedies or hormone leveling using the birth control. I've seen no changes in the frequency of my cold sores since starting 1GM of Valcyclovior. It's been about 3 months, and I met with my doctor today to discuss the issue. She basically told me there was nothing she could do and to see a dermatologist. She also gave me the list of vitamins I already to take to try to include with my daily antiviral. I feel completely defeated. I don't know what to do now or if there is any hope. It hurts me so much because I'm so young and nothing has gotten better. Also, I don't think a dermatologist is the answer. Has anyone else experienced this?

hi there i thought i'd share this as an alternative, https://hpathy.com/clinical-cases/acute-case-fever-blisters-herpes-simplex-virus-1-hsv-1/ 

i am going down the homeopathy route myself, 6 weeks in, too early to tell if its working for me yet i also am having a week of eruptions but i am sticking with it, if you are interested i suggest you have a chat with a local homeopath consultant, hope its of help :) 

Link to post
Share on other sites
2 hours ago, horseygal said:

oh great thank you, i have an appointment with my homeopath today so will ask her what she thinks, willing to give anything a go! have you gone down the homeopath route?

No i have not. But i will go their soon after lockdown is over. Although i m taking ashwagandha everyday. And it works fantastic and is cheap also.

 

Link to post
Share on other sites
1 hour ago, Shubhherpe said:

No i have not. But i will go their soon after lockdown is over. Although i m taking ashwagandha everyday. And it works fantastic and is cheap also.

 

i have seen my homeopath via skype and then she sends me remedies, actually just spoken to her and she is changing my remedy so i am hoping this brings an improvement !

what will ashwagandha help with specifically? i googled it and it says its good for stress but just wanting to now what it specifically helps with HSV2?

thank you!

Link to post
Share on other sites
5 minutes ago, horseygal said:

i have seen my homeopath via skype and then she sends me remedies, actually just spoken to her and she is changing my remedy so i am hoping this brings an improvement !

what will ashwagandha help with specifically? i googled it and it says its good for stress but just wanting to now what it specifically helps with HSV2?

thank you!

It will bring down ur stress and ultimately bring up ur immunity. And turmeric plus warm milk will bring down the inflammation if any.

Link to post
Share on other sites
JustMe&TheDogs
On 5/27/2020 at 7:34 PM, Elephant in the room? said:

Had an associate that was driven nuts by burning. DMSO topical worked for them. I know not everyone reacts well to DMSO. 

Screwed has numerous posts about topical ozonated oil. 

Obviously high lysine low arginine essential  does not always relieve symptoms  but theory is helps push virus out of cells  

the studies done on lysine show mixed results as they are not looking at the right factors. Big problem in science and publishing today! 🥰🥰

Whether u get relief orbit is not the factor  the factor is it starves the virus and also pushes it out of cells  

 

bee propolis is known to be VERY effective for most there was even a study on it and it was effective as antivirals

it can take time for things to clear up  

 

 

@Elephant in the room? can you tell me more about this bee propolis? The study I found showed success in vitro. Are people using a topical propolis or taking it orally?

Link to post
Share on other sites
Elephant in the room?
1 hour ago, JustMe&TheDogs said:

@Elephant in the room? can you tell me more about this bee propolis? The study I found showed success in vitro. Are people using a topical propolis or taking it orally?

Orally. It’s very popular on some of the Facebook groups. meant to be an effective as anti virals. I think there is a thread for it here. 

  • Thanks 1
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.

  • Single ➵ You may like to try the Dating App

  • Similar Content

    • Laguna
      By Laguna
      I've heard that even people who have never had an outbreak but test positive for antibodies can shed about 10% of the time and pass the virus. If that person was in a marriage and didn't want to pass to their partner, and took antivirals, could the antivirals possibly cause the person to start having outbreaks because the virus strengthens or becomes resistant to the meds?
      Some doctors say asymptomatic people don't shed and others say opposite. Makers of antivirals say in the description they can be used by symptomatic and asymptomatic individuals to "reduce" shedding and transmission. 
      Sorry if there's a thread like this but I couldn't find one.
    • Sadcat
      By Sadcat
      Is this herpes?  Ive been in disbelief that I do have hsv1 so I’ve been putting up to go  talk to a doctor because I don’t know what kinda questions to ask even if I did have the courage (Ps I do have a geo tongue ) I’m worried about the to Red holes above where my wisdom teeth would come in . Does anyone know if can you pass It on to animal/cats I’ve been so scared to give my kitty kisses or let her lick my face and would have to push my pet away 
    • Lifeonhopes
      By Lifeonhopes
      Hi All,
      Me and my wife positive for hsv1 igg with value 2.1(wife) and 3.9(husband) tested four times in a year range not changed.
      We both do not have any symptoms of hsv1. We do not have hsv2 which is always negative.
      We are trying for baby, and had two miscarriage in the time spawn of 1.4 yr.
      Is there any relationship between hsv1 positive igg leading to miscarriage??
      Anyone faced same issue with hsv1 and miscarriage.
    • Megneedshelp1
      By Megneedshelp1
      So this is going to be a long one but please stick it out. I’ll be extremely grateful.
      So after going to my doctors for a general check up due to me having Molluscum (had during childhood, but reappeared when I was 19) he mentioned having a routine STD check.
      I thought nothing of it and accepted. Everything came back negative, syphillis, chlamydia, ghonnerea and HIV. 
      What I didn’t realise is that herpes wasn’t a routine test and I started looking online about what herpes involved. I was scared and uncertain about my status now beings as the more I read. The more symptoms I believe I’ve had.
      starting in 2018 I had developed iritis which apparently can be a result of H. This however was during a stressful period of my life. 
      Since my first sexual partner my posterior fourchette has always been weak and I have little tears (not serious) ever since. They heal within a day. 
      However. Whilst itchiness, blisters, soreness is the typical symptoms for when people have it (and I have never had) I have noticed that I have had a very very thin, not deep, none sore (unless touched) cut on my inner labia a few weeks ago. 
      Then three days ago I had a tiny tiny cut which resembled more of very thin tear I guess it closer to a definition, since the one on my labia was more of a cut ( but I would also say like a scratch) on the upper part of my genitals just where the pubic area ended. It was quite sore when touched but didn’t bother me otherwise. I have had this cut before however typically when my pubic hair is growing back. In around about the same area which goes away within 2-3 days maximum.
      Does this seem like genital herpes?
      further more, I now have concerns about my mouth too. This is the first time this has ever happened to me. And had occurred two days after I started panicking about this, so I would say I was extremely stressed.
      My tongue turned Pale and patchy with red indents on my tongue. Ulcers (eventhough they didn’t hurt) appeared on the back of the sides of my tongue. The sores then travelled all along the sides of my tongue to the tip of my tongue. (A few yellow patches still being on the back of either side of my tongue) Being in one place, then moving to another. I must say that I had smaller sores and then I had food poisoning which resulted in vomiting which then made the sores triple in amount. Also there are light yellow patches/dots on the back of my throat. 
      I have been using salt water rinses and bonjella on the sores. It’s important to note that the sores don’t hurt or irritate me UNLESS I use the bonjela which causes them to burn a little. 
      I have never had anything like this in my mouth before and this has lasted two weeks,  And I guess I’m just extremely upset because I’ve only had two sexual partners. And have been with my current partner for two years. So for all of this to suddenly occur has created so much stress for me. I’ve already told him that there is a possibility since I wanted to be open from the very beginning, but since the COVID scares, anywhere I could get the cuts on my genital swabbed is closed and it’s already gone now. So I’m hoping I could eat some advice here .. 
      when seeing my GP about my mouth she said it didnt look like herpes and was quite certain. She said it just looked like ulcers and said it could be down to the immense stress I’ve put myself under due to panicking.
      So... Is this thrush/stress/herpes??? 
      Here are the links to the Reddit page I made showing the problems with my mouth as I unfortunately have no pictures of my genital cut.
      https://www.reddit.com/user/MegneedsHelp/comments/fql64p/is_this_herpes/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
      https://www.reddit.com/user/MegneedsHelp/comments/fql040/is_this_herpes/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
      https://www.reddit.com/user/MegneedsHelp/comments/fqkzlh/is_this_herpes/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
       
      THANK YOU 
    • LadyInPink
      By LadyInPink
      Does anyone have any advice about applying makeup and removing makeup if you have oral herpes? I'm finding it very difficult to not be wasteful with things like face powder, makeup brushes, tooth brushes and toothpastes, acne medications and moisturizers, and other items like that. I have a terrible fear of possibly spreading something all over my face, so any advice is appreciated. Thank you



×
×
  • 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.