It seems our insurance company will not continue to refill of my prescription for Valcyclovir. Apparently Menieres doesn't fit onto their list of diseases they feel this medication can be used for. Who knew they know more about prescriptions than the Dr. who prescribe it. Herpes is on the list. I've never been tested for herpes. A trip to my primary for blood work specifically to see if the virus shows up. Then I'm fine. What does everyone think about the test coming back and I don't have herpes?? That blows that theory of herpes causing Menieres. Doesn't it?
Bummer on your ins. They are really in a mode of tightening. All about what the FDA says the drug is approved for. I don't know the cost of that drug. But i do know if your doc writes it you can still have it filled Just your ins wont pay. Thats ok if its $10 but if its $500 then hard to do. Or look up all of the other conditions it is approved for and consider a work around....maybe you have one of the other conditions. I took SERC for a while which is the #1 Menieres drug in the world. But not FDA approved for anything in US. Had to have it compounded in a small local pharmacy or get it from Canada. Ins would not pay but also it did not help me. If yours works don't give up on seeing how to obtain. Good luck. s
Thank-you. The ins. has always paid and I don't remember the cost. I recall it being expensive. I'm going to try the herpes theory first with blood work. Thanx for the kind words.
Hey BumbleBea As far as testing negative ..It is estimated that over 90% of the population has HSV1. So the odds are greatly with you to be positive. If that is a good thing. Also if you ever had chicken pox then you have the herpes related virus that causes shingles so depending on your age you might pass that off with DR. And yes if you look at it .. There is like zero chance the Valcyclovir would even help any of your symptoms at all if you did not have some form of the herpes virus.
Well i say that... I do not know the length of the studies shown that perhaps there is some strange side effect of certain anti viral that somehow helps vestibular issues. One of the off label uses for SERC is that it causes weight loss. Which though I had to stop taking it due to insomnia... It really cut fat and sweet food cravings. I would eat no problem. But like staring at ice cream (my favorite thing in the world) It just did not look appetizing to me anymore when I took SERC. Or I have had hyperhydrosis issues in the past (excess sweeting) and one of the drugs used for that is actually a drug marketed for bladder incontinence. Side effect is that you do not sweat lol. So as I had I have not seen all the studies maybe the mechanism of how the antivirals work for meniere's symptoms could indeed be something other than the actual lowering of the viral count but some other mechanism that is not even intended by them... Someone will speak up and show me a study proving otherwise but I am on a roll so I am keep on keeping on lol. Or maybe BumbleBea you are patient zero in a huge scientific discover if you test negative
Does HSV2 concentrate in the ears as much as HSV1 one does? Just curious as I do not know if that can cause issues as well
No one knows. There is also epstein barr, cmv, roseola, and so on to the tune of 7 or 8 human herpes viruses most of which are ubiquitous. You probably have had most of them without knowing it sometime in your life. No one knows which one(s) may be implicated in hydrops. There is no way or need to test for this prior to trying the antivirals to see if they help you. Now try to explain that to the insurance company. Acyclovir is a lot cheaper than valtrex or famvir. Maybe they will not fixate on this if the price is less.
I'm going to have my primary do blood work first. IF herpes virius shows up I'll be able to get the perscription approved for medical resource.
Bea, see above. There is no generic herpes test. Everyone has had various herpes viruses in their life. What exactly do you think they would be looking for? Which herpes virus? Active or antibodies? No one knows.
I don't know. I'm hoping my primary will order whatever test there is. All I need is a positive herpes diagnosis. I know there are different viruses I'm hoping there are different tests for each one... I really don't know.
Unfortunately, there is no such test. If you had chicken pox, a cold sore, mono, roseola etc any time in your life, you have had a 'herpes' virus. No one knows whicn herpes virus(s) are at fault with mm so which one are you going to test for? Also, there is not a yes/no for these viruses. There are tests that indicates it is more or less recent exposure and activity. No one knows what level would be expected in this situation. The doctors who rx antivirals do not use a test. Just like they dont test for anything in particular when they rx prednisone or diuretics. Think of it like this. Suppose your dr suspected by your symptoms rhat you had a bacterial infection. But before he would give you an antibiotic, he said he had to test so he tested you for TB and you didnt have TB so he said he wasnt going to give you an antibiotic ignring the fact that there are many bacteria that affect us not just TB.
I guess I'm off the antiviral sand we will see how I do. If mm symptoms return, I have to learn to live with it. Thank-you for your advice.
I know a couple of people who simply went to their doctor and said they had genital herpes in the past and wanted to avoid more flareups. The doctors were happy to script them Valtrex and never bothered to verify or test.
That's a good one! I'm reading so many complicated testing. There's the blood work and there's a culture. He's aware of my medical history and always asks me what's new in the world of Menieres. I made an appointment already to talk to him and of course I'll bring my folder with Menieres research. Lol
Bumblebea, Can you cut back on less necessary expenses and pay for your antivirals as suggested in the above quote ? If they are helping maybe there's a way to tweak your budget? .
There's no way to tweak the budget to pay. I do have Acyclovir left from when I switched to Valcyclovir. The Acyclovir had stopped working after 2 years so I wanted to try the Valcyclovir. It helped immensely. I have 6 left. I've cut the dosage from 1000 mg 3 times a day to once a day. I'm not doing so bad. I did have a small attack 3 nights ago. Not long, altogether 1/2 hour and then right to sleep and woke up fine. The question is- do I finish the Valcyclovir, see how I do and if I have symptoms return to using the Acyclovir for as long as that lasts? (It's been in the fridge)
Why not. Acyclovir worked for me. Make sure to soread itmout throughout the day in five doses if possible. It does not persist in the system the way the other antivirals do, so i am to,d by a dr.
Bea, have you tried high dose lysine? That seems to work for some. JOH days to take it 3 times per day (1000 mg) on an empty stomach.