Anti viral feed back and time scales

Great to hear. It took months for me to get results, but 7 months in and so far so good. Keep us posted.

 

Interesting tidbit. I started taking Lysine yesterday thinking to give it everything I got. I woke up this morning with excellent hearing (guessing nearly 100% back to baseline). Then I had 1/2 tea cup of coffee, and right ear got slightly muffled. I know coffee is a no-no but I though just a little bit would be ok. Then I had granola cereal, and right ear even got more muffled (this isn't the first time, and hearing usually improves by lunch). Now I understand that people taking Lysine to combat herpes virus outbreaks are encouraged to eat foods low in Arginine. My granola has all the things in it that make it high in Arginine, so I am going to stop eating it. Also going to stop coffee again. My balance was excellent yesterday and this morning btw. We'll see what happens when I cut out the Arginine. Got to cover all the bases.

 

Arginine is an amino acid essential for the enzyme that replicates the herpes virus; which when replicating in the inner ear causes the inflammation there that cause the symptoms of Meniere's disease.

However, when present, lysine substitutes for arginine in the herpes replication enzyme and the enzyme, with the lysine in it, is no longer able to replicate herpes viruses.

If you have Meniere's, avoid foods high in arginine. As per my Meniere's treatment regimen, take lysine (but at least 20 minutes before a meal, or at least 2 hours after a meal; won't work if taken with food).

--John of Ohio

 

Got it, thank you John. I have indeed been taking it 2 hours after a meal after reading your comments here.

I can't help but wonder if the symptoms are from inflammation, or from an increase of fluid in the inner ear, or both? We all know the fullness feeling, but that may not be due to an increase of inner ear fluids. Maybe it is just inflammation and the destruction/disruption that the virus is doing that are causing the symptoms.

 

Had a little setback yesterday with some ear fullness, loss of low and mid frequencies, and tinnitus. It was my birthday and too much activity and sugar did me in. Better today. When I am recovering a few setbacks along the way are normal, especially during the first 2 weeks. I will not eat any more birthday cake. Nope.

 

Well here I am at the two week point on Valacyclovir (3g/day) and Lysine (1.5g/day) after the most recent MD attack. I am doing very, very well. No vertigo or balance problems. My hearing varies from excellent to being slightly muffled depending on time of day. The mid-range tone tinnitus I was getting periodically is now gone. Still have some high frequency tinnitus that comes and goes during the day. I also have to be careful to not exert myself too much or move my head quickly or do anything that is jarring to my body. I also have to avoid loud noise due to some hyperacusis. And of course maintaining my low sodium, low sugar, low arginine, low gluten, no alcohol, no chocolate, and very low caffeine diet. Today I am going to taper to 2.5g/day Valacyclovir and 1g/day Lysine and hold that for 2 weeks. I'll report any major changes.

 

Way to go...you're doing well.
I'll never understand why folks want to taper down when what you are taking is working.
Why screw with a winning formula? You could fall back to how you felt before starting the antiviral.
Stay the course.

 

I have seen studies where cutting back is still successful. Now, I don’t want to cut back for at least another six months so I can truly say I have it under control. But like you said, if it ain’t broke, don’t fix it.

 

I'll try to explain why I prefer to taper down to a maintenance dose or even none. Occasionally like most people I get a headache. 1 Tylenol takes care of it. Do I take a Tylenol everyday when I get up? No I don't. I prefer to not overburden my kidneys and liver by taking drugs daily. By tapering slowly I'll find that minimum amount of the drug required to keep me 100% healthy. I'm hopeful it is none. Note that I don't get attacks often, only about once per year, so my regimen may differ from yours and others. My doctor, who is now on board with anti-viral treatment for MD, also recommended tapering slowly to find the right maintenance dose for me specifically. So far things are going very well. I am acutely aware of the danger signs after having had relapses after a Prednisone course, so for me the downside risk is minimal and I'll know when I am going off the rails.

 

Here's a couple of interesting things that I noticed today. Before MD I had exceptional hearing. I am a musician, and I'm very aware of how good my hearing was. I am beginning to hear frequencies that I have not heard in years. Our furnace for example, produces a high frequency whir. I have just started hearing it again. I have not heard it since before MD started 4 years ago. Same with our coffee maker that beeps when it is done. I could barely hear that beep even when standing right in front of it. Now it is quite loud. The downside of all this is that I find moderate to loud noises uncomfortable and I find myself turning everything down. The other thing is that when on my computer, phone or reading a book I have had to wear reading glasses. For a couple of days now I've been able to ditch the reading glasses. I did a little research on this and apparently this virus can negatively affect eyesight and in severe cases cause blindness. Fascinating stuff.

 

You've done well do far...i'd up the antiviral.

 

I started at 3g of Valacyclovir per day per my doctor's recommendation, and that dose seems to be what others are taking at least initially. I added Lysine at 1.5g per day. I also stopped eating trail mix and granola that had a lot of nuts and seeds in it (along with the low sodium/sugar/caffeine/no alcohol etc.). I saw some improvement on day 2, and on day 3 was doing very well. This was after 3 relapses over about 2 months using Prednisone. Maybe your doctor can give you some guidance since he/she knows your health status and history.

 

I had two miserable months of an attack every day or every other day while starting on JOH and 3 g’s a day of Valacyclovir. I was constantly having cold sores on my mouth and nose while taking all this for those two months. It was like there was world war three going on in my body between them. After two straight months of that I broke into the clear and have been good since. I dropped down to 2g’s of Valacyclovir a day now as it was costing me quite a bit. I might drop down to 1gm at some point, but it won’t be for at least another six months. I want to make sure I have this crap under control and in the rear view mirror.

 

I'm not a Doc but I would do 3x a day and stay there for 6 months. This jumping around is for the birds.

 

A little update on week 4. I am holding steady with no vertigo and some fullness and mid-frequency and high frequency tinnitus that comes along in the afternoon. Hearing is usually very good, occasionally excellent. Last week I tried to taper down to 2.5g/day of Valacyclovir. I felt I was not improving, pretty much staying at the same level or even backsliding just a tad, so I am back on 3g/day this week. I'll stay at this dose for a couple more weeks and look for some improvement.

 

Some people already have kidney damage so that is certainly a problem. I have none, and 3g/day is not a problem according to my doctor, and so far I feel fine so not worried. But, I don't know what the future will bring as I get older, so I hope to find the minimum dose that keeps me 100% healthy.