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  2. IAmDesperate

    In anticipation of something to celebrate!

    Yeah and the stigma hit me pretty hard since I'm originally from Asia and we don't have sex ed or STD education so the regret and self-hating are as bad as stigma. Hoping is the only way to get me out of suicidal thoughts. I know that a lot has been done and I'm glad. I just hope they continue with the hsv research instead of abandoning it cuz it's not life-threatening and I also hope that the big pharma conspiracy isn't real.
  3. blurneworder

    HSV 1 Oral Herpes Issues

    @Dvm, he says this to almost everyone. Best ignore his bad advice
  4. Thx so much. However HSV can affect the trigeminal nerve/from post herpetic neuralgia and can actually cause all these symptoms. Some people, once affected can have short term symptoms, while others have sporadic flare ups and some are permanently affected. Gabapentin for trigeminal neuralgia, prescribed by my neurologist, did help me for some time, but I'm glad to be off it. Hope my post helps someone w similar issues who havent gotten help from primary care Dr.
  5. WilsoInAus

    HSV 1 Oral Herpes Issues

    @Dvm you can be assured that HSV is not the cause of these issues. As you have found, it’s likely a spinal issue and it sounds like you have found some help. Stick with that.
  6. Yes!! See my post about struggling w HSV 1 for 2 yrs. I just signed up today and told my story. Brain fog, pain on r side of face, dizziness, vertigo, numbness. Hsv1 lives in trigeminal nerve and can cause all these issues w flare ups. Good luck, and your not alone.
  7. I'm new to this page. Looking to hear stories of others w my issues & hope to find support. I hv had cold sores all my life. But 2 yrs ago I had a flare w 1 on my lip & 1 in ea nostril. Then the pain on my right side of the face started, along w numbness, dizzy, balance issues and a weird eye twitch and sensation. After countless Dr appts and misdiagnoses, research led me to find that the herpes lives in the face in the ganglion root & when it flares can cause all my symptoms and it happened to permanently damage my trigeminal nerve. After going to numerous Dr, neurologist, having MRI etc. My diagnosis was confirmed and although I dont like to take meds, I started on Gabapentin. 2 yrs I suffered and was miserable, near suicidal and hopeless, but I kept trying Drs and a friend had me tried an osteopath. Who started doing small manipulation on my scalp and neck, within a few days I progression of me feeling better started. Within a month I was off the meds and feeling amazing, I also found a new massage therapist that I worked w and that helped along w an accupuncturist.Then after a few months a trigger of cbd w menthol set me off for about a week then felt great again & then the accupuncture gal used tiger balm (w menthol) and that set me off. Good again and then yesterday some stress caused a flare of about 6 mouth sores on my roof of my mouth, woke up to massive vertigo. Started valtrex and talked to my Dr about just staying on Valtrex daily. I found this page & hope to hear others experiences & maybe mine can shed light on yours.
  8. Dvm

    HSV1 Raw spots in mouth???

    I hv had cold sores(HSV1) and they can b in your mouth, lips or nose. It lives in your ganglion nerve in your face & when it flares can cause burning, pain, numbness and it affected my trigeminal nerve and when mine flares i can get dizzy as well as brain fog and vertigo and teeth pain. It's very debilitating and the only thing i do is rest and take valtrex. Hope that helps you not feel alone.
  9. Yesterday
  10. True. It really depends on him/her whether to seek for pleasure over risk and it's his/her choice by right. Am just trying to give a suggestion on not to oral sex (which I would do in my case). That's all
  11. Saying no oral sex is unrealistic.
  12. Why can't you have oral sex?
  13. I was raped and he gave me herpes. Through all the fucking bullshit I’ve been through this is really the thing that’s making me consider wether or not I’m wasting my time here on earth. I feel like I’ll never be loved or be able to love. I’ll never get married. I’ll never have kids. There’s no fucking point. I’m fucking 17 and I feel like my times already run out. I’ve been ruined. Entirely.
  14. There's no reason not to have hope in Excision Bio. As far as I know, they are in animal studies right now. All I know about IND-enabling is what I got off the internet; i.e. IND-Enabling - Investigational New Drug (IND) is the key milestone prior to clinical testing on humans. Development of IND-enabling technologies is crucial for accelerate the discovery of new drugs and significantly reduce time to market and safety profile issues. No, I don't know anything about the process and how long it takes. I think you spend too much time on the edge of your seat expecting something to happen very soon. You need to understand that very good progress is being made and there are lots of things in the herpes pipeline; i.e. preventative and therapeutic vaccines AND gene editing for functional and sterilization cures. You should feel good about that. But in the mean time, do what you need to do to cope while you wait. I assume you're pretty young?
  15. Focri

    Smartest disclosing strategy after sex

    I hope you get something worse than herpes.... from someone who knew... decided that they don’t care about your happiness because they care more about themself... and you become sterile so your genes and lessons of judgement don’t t make it to the rest of our children a couple decades from now. You’re the reason there’s a stigma - all the deception and stupid assumptions with how one becomes infected. You should be banned for starting this stupid post with little possibly of a constructive dialogue
  16. IAmDesperate

    In anticipation of something to celebrate!

    Yeah he already has the protein so if he has an effective AAV (and no mutations) then everything is done. I just hope everything is going smoothly. I still have hope in ExcisionBio tho. The pipeline says that they'd enter trial in 2021. They still have more than 1 year to figure out these stuff. The pipeline also says "IND Enabling" for both HSV1&2's trials. Does that mean like the IND paper was sent and is in approving process? And do you know how long it would take to get IND approved?
  17. IAmDesperate

    In anticipation of something to celebrate!

    I'm sorry and I understand the pain you're going through I know right? Everything seemed to go slow after valtrex and they only thought about better suppressive therapy but the only better suppressive therapy is cure. I don't know exactly when they started digging into gene editing but the first trial for that was in 2009 for editing in embryo and after that, I guess they only thought about using it for severe diseases like HIV, cancer and so on or the editing using protein was a new concept back then so no one wanted to try or even didn't know about to research. You're right. We need to get rid of this and get a preventative vaccine. I just went back to the thread "GREAT NEWS....." of MikeHerp to read them again and it seems like he's optimistic that a cure would enter the market soon. I also remember that, in Dr. Jerome's conference back in January, he did a research and most of the participants were positive that the cure would be public in 5 years and I believe Dr. Jerome wants to make that come true so here is hope!
  18. Excision Bio is using CRISPR, not the man made meganuclease Dr. Jerome uses. CRISPR is unable to destroy the latent virus. I believe it has to do with the size of the Cas enzyme; it's too big to get at the viral dna when the virus is dormant. Dr. Jerome is the only one who has been able to destroy the latent virus. His meganuclease is difficult to create, but it is doable, and he has in fact created it. His meganulease is much smaller than the Cas enzymes currently discovered in nature. Note that there are many Cas enzymes and their sizes vary and so does their effectiveness.
  19. IAmDesperate

    In anticipation of something to celebrate!

    Oh okay, are you sure that ExcisionBio is only about suppresive therapy? They use gene therapy like Dr. Jerome so it’d be able to cut the virus’s DNA out of our neuron cell which means getting rid of the virus right? It’s just not as specific as meganucleases so means more off targets. But I get where you came from. If cas editing doesn’t work, we at least still have meganucleases. I kinda feel better since Dr. Jerome’s problem is AAV and not the protein. It’s hard to manipulate but they already have it.
  20. I'm quite sure Dr. Jerome knows about ExcisionBio. Also, ExcisionBio, if it does what they hope it will do, will not eradicate the virus. It's supposed to suppress viral replication but not sure to what degree; i.e. 80%? 90%? P.S. You assume ExcisionBio will succeed; I wouldn't make that assumption.
  21. hunger4more

    In anticipation of something to celebrate!

    Thats just it, I dont disclose or date... its a very personal private matter to me... very difficult to live with... People are petty and uninformed as it is with less complicated things so I'm not interested in having to filter through shallow people but beyond that I myself am still struggling to cope with it. I don't think I ever can, atleasy not with the way I perceive and enjoy life. I constantly base everything I do around evading triggering an ob.... sleep, injury, diet etc.... so Its a very rigid and limiting living experience in many ways.... In fact Maybe I sound selfish but Im not interested in a more effective treatment, I want a cure or nothing. Look how theyve ignored developing further applications since valtrex. I refuse to even try it. Its not worth the side effects. This thing needs to be eliminated.
  22. T9000

    Smartest disclosing strategy after sex

    Which studies are you basing these numbers on?
  23. Oh dang that's about the same as me. Have you been rejected by everyone because of it?
  24. WilsoInAus

    HSV1 Raw spots in mouth???

    This doesn’t really sound like herpes. I’d get tona doctor for advice and a swab to learn what’s going on.
  25. percival112

    Need advice on oral issues

    I will PM you @CheekyMunkey
  26. CheekyMunkey

    Need advice on oral issues

    @InNeedOfAnswers. I've pretty much had the same issue as you with the clinics. So I don't have any visual symptoms but feel like something is off. I checked an old test from 2017 and thought they had checked everything. I was wrong...herpes was unchecked. I had zero symptoms that time round. I don't understand why they don't just test. I mean they have the blood anyway. How much more effort would an extra test be? Unless it's super complex. If anything I just want to know where I stand and then move forward. The last Dr told me herpes is herpes. They both cause the same issues. If you get told you got HSV1 or HSV2 it makes no difference. You have no visual symptoms so carry on as per usual. Should something change or you get a sore then come back and we will take a swab. Etc. I actually messaged the girl I slept with because I wanted to know if she knew anything. She told me she visited the GUM clinic last week and was Negative. She also said she's never had herpes symptoms so she's never been checked for it. She said she could have it but she doesn't know. So...I'm none the wiser. @percival112. When did you last get a blood test done? Are you able to share the company that worked well? Or PM me? I want to get checked. I kind of don't want to but I know it's the right thing to do.
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