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whereismyanswer

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?

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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

Hey @whereismyanswer a good place to start might be if you can tell us what do these outbreaks consist of, where are they? Always on you lips?

It may be that an immunologist might also be a good idea, but a good dermatologist is usually brilliant. 

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whereismyanswer

hey there! I get them on both corners of my mouth. the right side feels like it never heals, while the left has outbreaks less frequently.

 

I was thinking an immunologist might be my next step since my GP is really giving me nothing anymore.

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Hey @whereismyanswer my only comment for now is that are you sure these are cold sores and not another condition such as angular cheilitis? Valtrex is effective against oral cold sores in 95%+ of cases so there's a chance that something else is contributing at least.

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whereismyanswer

Yes, taken the blood test and came back positive for HSV1

I wish it was angular cheilitis. I'm going to look into other doctors for treatment options.

 

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1 minute ago, whereismyanswer said:

Yes, taken the blood test and came back positive for HSV1

I wish it was angular cheilitis. I'm going to look into other doctors for treatment options.

 

Just because you have HSV-1 doesn't mean everything that happens on your lips is related to HSV. It does seem like a dermatologist would be a good move if your doctor is not thinking broadly enough.

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whereismyanswer

I've had this reoccurring monthly for 3+ years though. Do you really think this is something a dermatologist can have an answer to?

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@whereismyanswer for sure, it is extremely frustrating. You will need to backtrack though in order to come forward. Hopefully a specialist will swab the lesions and look for what is present (including HSV, bacteria etc.).

If it is HSV then there will testing as to why antivirals are not working, that may lead to additional treatment such as for your thyroid etc. 

It is a bit of a journey, but approach it fresh and keep moving through!

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Elephant in the room?
1 hour ago, whereismyanswer said:

not trying to be rude. just forever frustrated with the burning and blisters on my lips that don't go away

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  

 

 

Edited by Just a human being
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Elephant in the room?

Also someone who was banned from here used what’s called a zapper. Hilda’s Clark. Had something similar recommended to me recently. 

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MedicalMystery

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/immunologist if possible.  Something could be off internally or you could have developed a food allergy thay is triggering the outbreaks.

My drs tried a variety of antivirals on me when Valtrex didn't work, but the gateway is to get a positive viral testing swab with a positive result and have yoyr doctor order an acyclovir resistance test.  If that comes back positive, you may have access to other types of antivirals that are non-traditional but experimentally used.  A good allergist/immunologist or ID doc may be willing to prescribe these as well.

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Hi MedicalMystery. Reading about ACV resistant strains is always scary :( So you had the resistance test and it turned out positive? Was is like this since the beginning or did the resistance developed during the years?

If I'm right, the resistance is a cause of a mutation of HSV when it replicates, usually due to the use of antiviral that cause errors in the replication. The mutant should then be able to reach the neurons to establish a latent infection with its mutated genome. This can happen when the infection is transmitted from a person to another, or in a person that is immunocompromised. But it shouldn't happen easily in an immunocompetent person. I suppose that the latter is true (or at least, the chance that an ACV-resistant mutant can escape the immune system and reach the neurons is quite low), otherwise nowadays there would be only ACV-resistant strains (for natural selection).

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8 hours ago, MedicalMystery said:

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/immunologist if possible.  Something could be off internally or you could have developed a food allergy thay is triggering the outbreaks.

My drs tried a variety of antivirals on me when Valtrex didn't work, but the gateway is to get a positive viral testing swab with a positive result and have yoyr doctor order an acyclovir resistance test.  If that comes back positive, you may have access to other types of antivirals that are non-traditional but experimentally used.  A good allergist/immunologist or ID doc may be willing to prescribe these as well.

Hello, just curious what other antivirals are being experimented with, do you know of any? 

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Hi Where is my answer - If nerve pain/burning is a big concern i can highly recommend trying...

Amitriptyline - https://www.webmd.com/drugs/2/drug-8611/amitriptyline-oral/details

This is an uncommon prescription and doesn't help with the virus directly but greatly (and i mean greatly) reduces my nerve pain in between OBs. Traditionally is a big of a antidepressent which doesnt hurt. Currently on 10mg/day have heard of others going up to 25mg/day.

I found it via someone else on this forum and am happy i did.

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MedicalMystery

@hk81

@Miss Horne

For me, I developed the resistance at the onset of my primary infection.  We are not sure why, so drs ran immune panels and could only find lower peripheral NK cells than a normal person.  Distressingly, Foscarnet did not work either, which uses a different method than valtrex which is a thymidine kinase inhibitor.

I eventually enrolled in a local drug trial for raltegravir (Isentress).  It's a reverse transcription inhibitor used to augment HIV meds but it showed some promise w EBV.  High doses of raltegravir have lowered the severity of my outbreaks but not stopped them.  I still break out every day, but with less lesions and smaller ones.  Before they were pencil-eraser sized.

Drs don't know why I have the resistance but they think there must be something wrong with my immune system, despite tests coming back normal and no detectable autoimmune issues.  I did have Lyme and it fucked me up really bad years ago, so maybe that explains it.

9 hours ago, hk81 said:

Hi MedicalMystery. Reading about ACV resistant strains is always scary :( So you had the resistance test and it turned out positive? Was is like this since the beginning or did the resistance developed during the years?

If I'm right, the resistance is a cause of a mutation of HSV when it replicates, usually due to the use of antiviral that cause errors in the replication. The mutant should then be able to reach the neurons to establish a latent infection with its mutated genome. This can happen when the infection is transmitted from a person to another, or in a person that is immunocompromised. But it shouldn't happen easily in an immunocompetent person. I suppose that the latter is true (or at least, the chance that an ACV-resistant mutant can escape the immune system and reach the neurons is quite low), otherwise nowadays there would be only ACV-resistant strains (for natural selection).

 

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If it happened in the first weeks after the primary outbreak, I suppose that it's a phase when the immunity against HSV is not fully developed yet and reinfection is possible. Doctors use to prescribe immediately a ACV therapy; but maybe that can cause more chances of developing ACV-resistant strains?

Did they consider to request the early-access of pritelivir for you? Since you have a diagnosed ACV-resistant strain, you qualify to obtain it..

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On 5/27/2020 at 4:45 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?

 

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MedicalMystery

@hk81

I did qualify for the pritelivir trial initially!!  I went to the hospital to get assessed, but when they realized I might have to stop my current therapy to try pritelivir, and they saw how severe I was off the raltegravir/lysine, I was actually TURNED AWAY from the study bc they were afraid of how severe my case is.  They sent me to the best immunology department on the East Coast for genetic testing, convinced I had a rare mutation that caused this.

 

Spoiler:  I don't. 

 

So now I'm in the lurch bc everyone is like, what the absolute f*ck is wrong?  There are like, less than 30 people in the country experiencing this.  And bc doctors believe in "first do no harm," that apparently means don't TRY anything experimental unless a blood test explains why it will work first.

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@MedicalMystery

I assume that the trial was not a good option, because you had to stop your actual therapy for some time before starting the trial and you could have received the placebo. The early-access is a different thing than the trial.

What's exactly the issue with the severity? Do you outbreak always in the same region of the body? Are the blisters large / many / painful / require a long time for healing?

I don't know exactly what they did to check your strain. I hope that they tried to do a cell culture and check which kind of plaques it was forming. I have read an article in which they were showing how mutation can change the size of plaques and make them bigger.

Beside that, I believe that an immunology lab can check your immune system; probably they can check how your immune cells reacts to a pathogen doing something like an in-vitro analysis. That would be the easiest way to understand if it's a problem of your immune system or if it's the strain.

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MedicalMystery

@hk81

Thank you for all the info and help thus far.  I have an initial thread detailing my condition that I posted.  I'm not sure how to link it but you might be able to find it through my profile.

I went to MGH for a complete immune workup.  They could find nothing out of the ordinary with my T cells, my B cells (except the mature slower than normal), and that I have half the NK cells a regular person does, but not enough for a severe deficiency, and their function is intact.

There has been talk of taking me off all my antiviral meds and reculturing to see if I have a super strain.  (They can't get enough of a viral load to culture right now bc of my antivirals).  But it is so dangerous bc I will end up hospitalized and probably take months to recover (this is their opinion).  I am perplexed as to what is doing this to me.  The only other factor is that I caught Lyme disease about 7 years ago and my immune system was never "right" afterwards.  (This is pre-herpes, caught that later).

Regarding the pritelivir early release, can I just mention it to my immunologist and see if they'll work with me, or do I have to go to a special doctor or clinic?

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I believe that it's enough that a doctor contacts them and they will ask him more about your situation in order to prove that you meet the requirements to receive the treatment. There is a thread in which a user said to have contacted them; maybe you can ask him:

https://honeycomb.click/topic/80155-early-access-pritelivir/

I'm sorry for your condition :(

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my doctor and I attempted to get me into the pritelivir "early access" program recently.... I have developed an acyclovir resistance (possibly related to high doses of prednisone prescribed a year ago).  Unfortunately, I found out today that because I am not immunocompromised I was rejected for entering the early access program.  Very disappointing to say the least.  I had such high hopes of getting on the pritelivir..... Valacyclovir and famciclovir are of no use now so, I'm at the mercy of this virus.... I'm loading up with as many supplements claiming to help with HSV2 as I can possibly get my hands on!    Bleak.

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