June, You've said that you took antiviral and they've helped. What was your dosage? Do you take a maintenance dose? How long has it been since you've taken antivirals and are still in remission? I ask June because I know that's part of her story but anyone who has achieved remission with antivirals please respond as well. I think this might be interesting. ( Dr. is running a herpes panel with my blood work. ) it's a start.
I have never taken a "maintenance dose". I first took acyclovir. I do not remember the dosages. I followed what Carribean recommended at the time. Later i took famvir. I have posted the dosage here several times but do not have it at hand. I think you can find it by doing a search. I took antivirals probably about five minths in the befinning and a couple or three times since for a month at a time. The improvement came slowly two steps forward, one step back. Do not give up if you have a step back. Just look at the general direction. Well, i would like to know what specifically your doctor is looking for in these tests. S/he must have some special knowledge none of my doctors do.
https://www.ncbi.nlm.nih.gov/books/NBK47447/ "Herpes simplex viruses are among the most ubiquitous of human infections. The frequency of HSV infection has been measured by testing various populations for the presence of antibody, as both virus and the immune response are thought to persist after infection for the life of the host. Worldwide, ∼90% of people have one or both viruses." in addition to these, there are six more human herpes viruses. Chicken Pox/shingles, epstein barr (mono), cmv (mono), roseola are very common. Most people have them as children and may have no symptoms. I wish i knew what your doctor thinks he is testing for since almost everyone has had these at some point. Is he testing for presence of antibodies representing a past i fection? State that represents a current i fection but no symptoms? What? Do you think he would share that?
For more info http://www.jlponline.org/articles/2016/8/1/images/JLabPhysicians_2016_8_1_5_176228_t4.jpg
Initially I was on Acyclovir for 2 years. Started with 1000mg 3X a day. I was one of the ones who went back and forth to see improvement. i lowered the dosage to 1000mg 2X a day and that was my maintenance dose. I never stopped taking it. Then I started experiencing symptoms again. Reading here I decided to ask my Oto for Valcyclovir specifically from Northstar. I've been on that at 1000mg. 3X a day. It's been a few months and my symptoms are very mild now. My insurance co. Has determined that Menieres is not on the list of approved diseases to be treated with Valcyclovir. Herpes IS on that list. My Dr. is doing what he called, "a herpes panel." The hope is that it DOES show up so I can get back on the Valcyclovir. That's what we're looking for.
Herpes simplex? Surely they can get something that can be called positive for at least one of the many herpes viruses. That probably would take numerous tests. I hope it works out that you can try it again. I didnt take a maintenance dose but i did take it again when i had flareups. You can also try to take some stress off the immune system by getting enough sleep, avoiding allegens or situations that are stressful for you physically or emotionally. Personally, i think getting enough sleep is highly underrat d. Good luck.
What if you didnt have menieres but had viral labyrinthitis? Would the i surance company approve it for that? Honestly, i dont know how they differentiate anyway. http://vestibular.org/labyrinthitis-and-vestibular-neuritis
I don't know if they would approve it for that or not. I don't know why they stopped covering it. I'm just doing whatever I can to get a diagnosis that they will cover. Sleep is highly underrated, lol. Thanx June
A lot of insurance companies try to stop paying even when they should. It's standard procedure in their playbook. If you are getting it through work, try asking your HR department for backup. Or see a lawyer. It's definitely worth a shot.
"Sleep is highly underrated, lol." I concur with BumbleBea - for most of my recent "bad days" I can trace it back to insufficient sleep the night before.
If you call around to small pharmacies, many can order Northstar Valacyc. , the cash price for 1000 mg pills is $1 a pill without insurance.
I don't know if I shared that I was back on the Valcyclovir. It's been 3-5 months now. I'm doing so much better. Very few episodes but none are debilitating. Today I had a "normal" day. This is great. Continued success to any starting or new to antiviral treatment.