My ENT refused to listen to me when I asked about AV treatments. So I contacted my family doctor. I sent her the letter that JOH has posted before on this board (http://menieres.org/talk/index.php?topic=557.0), along with two articles – one being Dr. Gacek’s (http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf) and the other (http://www.sciencedirect.com/science/article/pii/S1568997212000092). She called and stated she was open to considering this treatment and that she would schedule a 30 minute appt. to go over it along with my progress/current symptoms/etc. I met with her today and she is going to prescribe the Valacyclovir according to Dr. Gacek’s regimen. First I have to get blood work done so she has a baseline for liver/kidney function. She stated that long term use of Valacyclovir can cause kidney issues so she will start with the baseline, do blood work again in 3 weeks, then every 2 months after. I will continue the JOH regimen as well as it has provided significant relief thus far. I’m also continuing with NUCCA, low sodium and a gluten free diet. A few weeks ago when I got sick and a cold sore emerged she gave me two high doses of Valtrex over a course of 24 hours. During that short duration I had lots of sensations in my affected ear, it felt like it was draining at times and the brain fog and dizziness seemed to go away. I’m hoping with the addition of Valacyclovir I will have great results! I will keep you all posted.
Wow!! GREAT NEWS!!! My first couple of weeks on valacyclovir were the BOMB!! It was the best two weeks I had had in a long time. But, then the honeymoon ended. I was back to aural fullness for a day or two and then clear again for a day or two. I just recently cut back on caffeine. I drink about two cups per week and never have been a soda drinker. I stopped consuming alcohol 11 days ago. I have been pretty clear eared for over a week. So, maybe there is something to the limiting of caffeine and alcohol. You are on a great regimen. I am still eating oatmeal and whole wheat bread. Keep up the good routine and Good Health To YOU!!
So very exciting. I hope it works for you! At the very least, you will know that you have a doctor willing to "try" and also know that you are able to explore all options. The fact that you had changes in your ear while on the valtrex for a cold sore, combined with the fact you get cold sores, appears to me to have a definite connection and good possibility of success. Listen to Vicki and make sure that your dr follows Gacek's regimen. For me I got some improvement in the first month and asked Gacek to stay on the full 3x day dose for another month (he agreed) and tapered down from there. Currently at 1x day and my ear is more clear and quieter more consistently than it has been in 4 years. And...knock on wood...no vertigo for a bit!
Great new! nicgmer..fingers crossed that nasty vertigo stays away for good now. I found the longer I was on the antiviral the better it worked and the better symptom relief I got. Sarah keep in mind there can be ups and downs during the first few months on antivirals, and if you feel decreasing bring son symptoms go back up and try again after another few weeks. Also keep in mind, even though my MM symptoms are pretty much under control but if I get sick or stressed and very fatigued and especially around seasonal allergy time I need to increase my dose of antivirals during those times. Dr G told me during allergy season I should stay on 1200 mg instead of my 800 mg maintenance dose since my MM reacts strongly to seasonal allergies.
Thankfully I haven't drank caffeine in over 10 years so no big lifestyle change there. I have cut back on alcohol consumption since it seemed to affect the dizziness the next day. I'm excited that my doctor was willing to listen. I may be asking you questions as I start the regimen since you currently take Valacyclovir as well. I'll keep you posted!
She is doing the dosing according to Dr. Gacek's paper - starting with the dose tid for 3 weeks, then tid for 3 weeks, then the maintenance dose. I will double check my prescription once she issues it to make sure. I'm awaiting my blood work from yesterday before she will send the script to the pharmacy. I will keep you posted!
I agree that there is definitely a connection with the cold sores. So happy to hear that you've had success on it. My hearing seems pretty good and I've had no fullness in my ear since doing the JOH regimen. Hoping the Valacyclovir will help to eliminate the vertigo and daily dizziness. :::fingers crossed:::
Sara, that is great news! Congratulations and good wishes! Valacyclovir has been a huge help to me. I got hearing back that I thought was gone forever. I am also much more comfortable with less fullness and tinnitus. That was worrisome to read. I've been hearing how safe the AVs are, and that AIDS patients have been on them for years. My ENT tested my liver/kidney function once, but doesn't seem in a big rush to do it again. I started AVs last August. About a month on Acyclovir and then to Valacyclovir. I haven't been able to get the dose down--I think I'll post about that elsewhere. I'm curious what others hear from there doctors about kidney issues. How often are others getting liver/kidney tests? Do we know of anyone here who has had kidney issues? If that happens to you, do have to (gulp) stop taking AVs?
I always find it funny that the medication for an issue a lot of times has a warning that it causes the same thing! Antidepressent medications that warn "may cause suicidal thoughts", vertigo medication that may "cause dizziness". LOL
@BTB…my original ENT wants me to test every three months for liver and kidney function. The first test showed no impact from the AV's. Dr Y suggested that the test need not be retaken in that if my organs processed the AV's in the first couple of months, then it was not an issue. I am however scheduled under ENT 1 for a blood test in about a week. I will do that just to be sure. I have not yet dropped down from 3 valacyclovir/day. Today was a bad ear day…the worst in over a month..with no real explanation for it.
From what I have read online (not saying it is all true!) impact to kidney or liver function from anti-virals is typically found in conjunction with a person already predisposed to kidney or liver issues. From what I understood that if you already have kidney or liver issues than it could impact the body's ability to process the anti-viral completely through/out of the body. I just finished from a full blood work up and physical - I have been on anti-virals since April 2014 (so getting close to a full year). All of my kidney and liver functions looked great according to my doctor. My vitamin D was extremely low; LDL was higher than the "target" but that is somewhat offset by the very high HDL levels. Interesting note - the blood test for auto-immune issues came through negative. So while meniere's is considered part of "auto immune" and I definitely have it...my blood doesn't show it!
I insisted on the full auto-immune workup when I was first diagnosed with MM in September last year. I too failed all the tests. Good to mark one off the list at least
Thanks, Holly and nicmger. Holly, interesting that you are still on 3 gms/day, too. Every time I think I might go down, something seems to happen. Weren't you thinking of switching to Famvir?