Doctor hasn't prescribed antivirals...

When I told the Doc how antivirals helped me he replied, "Huh, never heard of that before."
It's not mainstream doctoring, you'll only read about it on here.

 

My GP prescribed them for me when my ENT would not. I dumped the ENT after that and found a new one. AV's did not help me. 0%.

 

Since March I've been taking 3 Valtrex, 1000mg each, spread out during the day.

 

Got the script from the Family doc, he's good with whatever I wanna do. I've been much better, no more fullness in the bad ear, hearing has improved, still get dizzy spells but no more crawling to the bathroom while pushing the puke bucket across the floor.
Course this improvement could just be the way I'm rolling right now but I'm to scared to stop the antivirals!

 

valacyclovir 3g per day for 3 months.

 

I gave up the 3g of Lysine a few months ago for the very reason that not all MM is caused by a virus. My progression has remained constant throughout the treatment of JOH and AV's. My condition occurred in flare cycles which started out every 3 months with the frequency of flares worsening to every 3 weeks. My treatment trials had to run for at least 3 months to have a factual evaluation. A treatment plan needs to provide evidence of real success or failure.

In my own 4 year journey, I am at the point my Doc thinks my vertigo is caused by MAV and there is successful physical evidence to support his treatment plan. At this point, all this other stuff is just talk to me because it all failed.

A suffering person can come to this site to get ideas to try and support to "go for it". That's about it. The reason I say this is because the causal tree for MM type symptoms is large. What works for one person may not work for anyone else. It's critical to maintain a positive perspective to evaluate your symptoms, identify patterns and constantly search for treatment plans. But when those plans fail, it's time to move on. Otherwise, you end up in a cycle of doing the same things, the same treatments that continue to fail. And you tell yourself, well maybe it helps a little. I call that failure.

I don't regret JOH and AV's as they were no brainers to try. It's not like surgery. I still maintain most of the JOH regimen for general health. I maintain the LOSO regimen for the same reason. I have found the MAV diet to have refocused me on general health strategies more than when I hoped and prayed JOH or AV's would be my savior. Losing 10 pounds and cutting junk out of my diet not only supports my current treatment protocol, it also helps me feel better in general.

I guess what I'm trying to say is for folks to not fall for the trap of thinking MM as a beast that is narrow in initiators. It's more like a puzzle. A puzzle that takes time and patience to put the pieces together. Every individual has a different history that changes the causal map. One thing for sure, we need to take control of the journey as nobody else cares enough to do it for us. I also suggest folks not to plan on a quick fix.

OK, down from my soapbox.

 

Hi Jon,

I've been taking lysine and vitamin c since mid July. Started monolaurin on September 4th and had worked my way up to half a scoop 3x/day but my tinnitus was getting worse and I developed hyperacusis so four days ago I stopped the monolaurin. Hyperacusis continues to get worse daily with today being the absolute worst. I have not been overprotecting my ears so this is very confusing to me. Not sure if monolaurin was the cause of all this or what is happening, but I'm really scared. I'm sure it goes without saying in this group, but you never realize how important your ears are until they start malfunctioning.

I have reactivated EBV which I suspect is the cause of my ear issues. My tinnitus was previously quite soft and non reactive and totally changed the past few months around the time of my diagnosis.

I recently purchased olive leaf so I guess I can use that instead of the monolaurin? My doctor also said I could go on valtrex if I wanted but I'm afraid it might spike my tinnitus or cause more hearing loss. Prescription drugs in general scare me now. Would love some advice. Thanks!

 

Hello Jonbubo, I can’t find JOH recommending olive leaf and monolaurin as part of his regimen in his final posting years, can you please point me to this? I definitely interesting in incorporating it. Thanks!

 

Is it ok to take an AV, Lysine and OLE at the same time??

 

Thanks Jon

 

ENT told me today that we are going to start the intratympanic injections on 11/20. Can anyone who has had it done tell me if it hurts?
My mind shut off as soon as he said needle into ear!

 

They will number you ear drum. Not terribly painful. Are you getting gent or steroids injected?

 

Numb***

 

Steroids

 

Had the shot, no big deal, you'll get a little dizzy for about a minute

 

I had one injection into my eardrum. It felt weird, but not painful. I think the most stressful part was the thought of what was going on.

The treatment didn't help me, FWIW. My doctor said that if there was no improvement after a week, then there was no sense doing it again.

Worth mentioning - I bought an otoscope after my ear trouble started, and I would takes pictures of my eardrum every few days to track any changes. After the injection, I could see that my eardrum was a bloody mess. When I asked about it, I was told that there was no way I could see my eardrum, and that it was "completely healed". He probably misunderstood me and thought I was using a series of mirrors to look into in my ear. It took months for it to look normal again. When I saw another doctor and mentioned the otoscope, I was told that I shouldn't use it. I get the feeling that some ENTs aren't used to people being able to check on their work, and they don't like the idea.