So a week has gone by since I had an attack. Yes I am holding my breath as I follow John's Regimen. Although the ENT prescribed only 500 mg of valtrex I have doubled the dose. I do know, that even without attacks I still feel the symptoms slightly, as if I am going to have an attack, but dont. And then I reckon it is the valtrex doing it's job? Have other people experienced that? And has your vestibular balance improved at all? ENT was concerned about liver and kidney disease - and will have to be checked for it shortly. Tinnitus is still bad - but I can live with that. Thank you all - this forum has already been a godsend.
Good to hear you are doing better. Yes I believe the combo of lysine and the valacylcovir is helping, IMO it would help more at the proper dose, but I know you are having trouble getting your dr to comply. My balance improved greatly and the longer I stay on an av the better I feel. I think though after 3 years I have gotten to a place where my lack of symptoms (vertigo daily dizziness and imbalance) are where they are going to stay. which is away lol But I do and probably always will need to increase my dose temporarily when my immune system gets weakened such as illness, allergies fatigue stress etc etc. until there is a cure, not just suppression.
Vicki. That is awesome., thank you for this. Question though. Do you and anyone else reading this - get tested regularly for liver and kidney damage?
I do. My liver is fine but I was diagnosed with mild kidney disease 2 years ago. I'm an otherwise healthy (besides Meniere's) 42 year old. My kidney doc thinks it's likely from long term use of diuretics which I went on right after my MD diagnosis. I've since switched the type of diruretic and am on a half dose so things have stabilized (as far as my kidneys go). There's also a chance, he says, that the high dose lysine I tried for over a year played a part (I tried JOH to no avail). No one can say for sure what the cause was, but some bloodwork I had done coincidentally about 6 months before Meniere's started (and before all the meds) showed everything to be normal. I've been on generic Famvir for about 6 months? Maybe more? And although my kidneys have remained stable through it, it hasn't helped my ears so I think I'll be going off soon I thought things were going well for a while though, but my bad ear has gotten a lot worse and now my good ear is showing the signs. Hugely bummed.
I do every 3 months from my endocrinologist who has been checking it every 3 months way before I started an antiviral due to some other meds I take for cholesterol issues. But anyone on an antiviral should get their liver and kidneys checked regularly. Need not be every 3 months but at least twice a year
If you can't get enough Valtrex, then taking high dose Lysine is certainly worth a try. Not sure about the rest of JOH's regimen, but it certainly doesn't seem to hurt anyone.