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  1. I promised myself if I found any answers I would post it here for anyone else. I have found out after being dismissed and ignored by STI drs and by my gp that I have an immunodeficiency. I suspected this is in March and then again in April and it took me till now to insist on seeing an immunologist. If you are having unexplained outbreaks please seek a referral. I don’t have any other info yet so I can’t answer any further. Don’t take no for an answer! xox
  2. 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.
  3. Lovely supportive comments thank you for sharing 🙂 I can relate to so much in your experiences. I have developed chronic fatigue syndrome as a result of the outbreaks and that is forcing me to put my health first above everything else. Stress is the enemy absolutely. I wish you all happy healthy healing vibes going forward xxxx
  4. I’ve been told to take 1g x 3 a day atm ‘until my immune system picks up’
  5. Yes. I was not good on 500mg. Consider changing doctors if they have no good reason
  6. This is so helpful thank you for this it really means a lot. Sorry to hear you’re having such a similar issue, I really appreciate hearing from your experience. Nerve pain and fatigue have been the worst parts for me, which has meant it took a while for me to be given a higher dose in the first place ‘herpes doesn't act like that?!!’ Well it’s responded to higher dose antivirals - so yes it does. They were constant for 3 and a half months with no break but I’ve had a month off and now had a small one which I hope is now clearing. I’m definitely going to ask about this higher dose, thank you, from my understanding it takes a while to clear it completely even on the right dose but how long is another matter.. I’m looking into the Perrin Technique for the fatigue as it’s supposed to help the body clear infections and anything that might be causing toxicity, this is a chronic fatigue/ post viral treatment so not a solution to the herpes but hopefully something to help my system. I think it’s well worth looking into resistance, I think I will struggle as I’m not getting the ulcers at the moment, just bumps that don’t break the skin and the internal nerve symptoms (which I couldn’t believe could be so painful). But I’m going to push for swabs and more investigation. I think I’m repeating myself from another thread, but I am also trying Llysine to see if it helps - incase that’s something you could also try. Wishing you well. I can’t imagine all of this with a new baby as well, you’re doing really well in the face of something awful and underestimated by the medical community. (** Posting about all of this not intending to scare any newly diagnosed people, these things often become a problem for a season, along with other physical strains on the body and it’s very individual to the person. I think it’s worth sharing low points on forums for those in need but if you’re reading this and are someone who worries a lot take the experience of others with a pinch of salt, as no two people have the exact same medical experience)
  7. RookieBex I did actually! I tried a week off of them and I think it made a difference but I’m sort of stuck as I have to take them (for a different awful and almost more painful condition.) Why are speciality doctors so unhelpful! I’m told 1g Valtrex would stop it completely and guess what its not stopped. Thank you for the solidarity! I’m trying Llysine now.. will report back if I find anything helpful.
  8. Hello, 6 years diagnosed HSV2. I’m convinced the antibiotic I’m now taking longterm is what’s causing this 5 month long outbreak streak. I have been upped to Valacyclovir 1g a day and after 5 weeks of this working I have woken up with a new outbreak. Its less severe but its very much a thing. Has anyone else still had outbreaks on 1g Valacyclovir? Is anyone taking higher than that? (Would not change my own dose without doctor supervision) My doctor was so sure this would suppress it. Also I can’t stop my antibiotic as I have to take it for a bacterial infection. Also, I have developed post viral/ chronic fatigue since this started and now I’m pretty sure it’s cyclical. Not looking for a magic answer but has anyone else experienced any of this? I feel.. whats the word.. unlucky.
  9. Currently on month 4 of rolling outbreaks. Have had neuropathic pain and flu symptoms. Now nerve pain is all thats left but it wont go. I’ve had this 6 years too and I think this was brought on by other meds as thats the only change I can think of. I want this hell to stop.
  10. Hi. I’ve had HSV2 for 6 years and been on Acylovir most of that time. I’ve had breakthrough outbreaks but they are painful/ annoying for a few days usually and get me down but clear up soon enough. I never had to heighten my dose or thought to. Cut to last month an outbreak so severe, new internal sores which has never happened and in other new places, finally upped my dose but not till a week later so took a few weeks and a few higher doses to clear. This month I missed one tablet, one evening (!!!) and had another terrible outbreak but this one there hasn’t been sores just pain/nerve problems and weakness to the point where I couldnt open my eyes or speak I was so weak for a few hours each day for about a week. I went to A and E and they gave me 5 days of Valacyclovir and that has certainly stopped my viral neurological symptoms getting any worse but Im now on suppressive Valacyclovir and I just hope it clears the horrible feelings down below. I recently started high dose long term anti-biotics and two consultants I asked think its nothing to do with it but its suspicious to me.. also wondering about a possible BV and thrush connection with outbreaks as anti b’s have given me those. Things are v off.
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