Your experience with acyclovir

I have read alot of forums about acyclovir experiences but I didn't see anyone mentioning this or maybe they did in older forums.

When you first start the acyclovir did your ear went out of control? My ear did for the first two days then it pretty much died.

Did you feel little of light headed feeling when you first started? I am feeling different kind of light headed feeling (it comes and go) that it's in control it's not a weakness feeling but it passes through.

I only have been on it for 3 days, I am sure that it will take a month or two before I can know if it's working for me. I am just curious about the first few days to first few weeks experiences that you guys had when you just started acyclovir.

 

Many of us have had success with Acyclovir, myself included...although, I am also taking JOH, a diuretic, and following a low salt diet.
My doctor, a Neurotologist, prescribed the Acyclovir for me and has told me that it is considered a breakthrough treatment for Menieres.
I have not had ANY adverse effects from Acyclovir...I stated it in August of 09 and was diagnosed with Menieres in March 09. I had low frequency hearing loss in my right ear that has since reversed. I have tinnitus, though at a lower volume now and episodic fullness. I find that I can go months without fullness and then I develop clusters of fullness that take days to resolve.
Three days is nothing, my doctor says that I should be on the med for at least a year. Some people have had great results in a matter of months...I did find that when I backed off some of the elements in the JOH my symptoms returned despite taking Acyclovir, but, the JOH by itself was not totally working for me either...I feel you have to hit this thing with all you got...try anything short of invasive treatments....the goal is preserve your hearing and to prevent the disease from progressing.
I wish you well.

 

Hi Smith,

Here is a thread that contains member experiences and other resources on Acyclovir:

http://www.menieres.org/forum/index.php/topic,23217.0.html

My husband has been taking Acyclovir for about seven months now. He is essentially back to normal.

He said the first week of treatment was the most difficult - a lot of activity in the ear (like something was cooking). He also felt a little dizzy, but this subsided quickly. Although he felt strange, he could also tell something positive was happening.

I hope you experience the same level of relief. Acyclovir has been a real blessing for my husband and for our family.

 

Funshine- I am starting JOH regimen on sunday, I should be getting all the supplements today! However I'd take one at a time weekly just to make sure I can take all of the regimen. I'm really glad that everything is working great for u! I hope for the same with me .
Jordan- thanks for the website, however, people didn't really speak much of their experiences as in the first few days to couple weeks on anti-viral. You answered my question! U said ur husband felt weird the first few days, that's exactly how I'm feeling. My first two days my ringing was out of control but now it's gone. I'm feeling litle light headed but different type. It's not normal kind. Hopefully it's a good new!

 

I took acyclovir 400 mg, 5 times a day. Days one and two no change, Day three hearing worse, Days four and five hearing distortion began to improve. It continued to improve in a zigzag fashion for a month.

 

Hello,
I sent a post to this forum just today regarding the drug Acyclovir. The post is named "two-week up-date on Anti-virals".
The first week for me was pretty miserable regarding all of the MM symptoms. But, now at the end of week two, I'm feeling MUCH bettter than in a LONG time.

Blesssings 2 U,
MamaBear

 

Funshine who is your doctor and where is he/she located. I am trying to get a few names that I can give to my doctor so that she may contact them if she wants as she is learning along with me. Thanks Patty

 

when i took Valtrex for 90 days at high dosage (3g and 2g per day) i felt nothing, not sure if it helped me or not, it is most likely that the calcium channel blockers are the thing that worked for me.

 

Casey, My doctor is Dr. Lauren Bartels with the Tampa Bay Hearing and Balance Center in Tampa FL.

 

Hi Casey,

Here is a list of doctors who have prescribed antivirals to their patients:

http://www.menieres.org/forum/index.php/topic,24288.0.html

 

i would really like to try the antivirals but so far my doc won't prescribe them because the studies he has seen aren't quite complete enough. when i asked him (a couple years ago), however, i was asking about valtrex which i understand to be really expensive?? is acyclovir a generic? i'm thinking that if it is that maybe i can convince him to let me try it. he had said something before about it being very cost prohibitive.

i am so impressed with the stories of success that i read on here!

 

If you are in the US both acyclovir and famvir are available in generics. I don't know about valtrex because i was never prescribed that. Dr's routinely prescribe prednisone, a much more dangerous drug, for patients to see if it will help them. Some it does, some it doesn't.

I think it is sometimes effective to say to the dr, that you know it is not certain it will help you, that it helps some and not others. But that the alternatives, even things like prednisone, are much more destructive than these antivirals which are relatively speaking innocuous drugs. And say if he knows of nothing in your health situation that would make them dangerous for you in particular, you would like to try them so you will know you left no stone unturned before you consider destructive options or resign yourself to a life controlled by the symptoms you are dealing with now. Be sure to have handy the correct dosages for acyclovir or famvir with you so he doesn't have to wonder. These drugs are prescribed in different dosages for different things and he won't have a reference for Menieres.

 

thanks june. that is a great way to approach the subject. i do have a great doctor and he will listen. he may in the end not agree with me but he listens and always explains carefully why he disagrees. part of the reason i like him so much. i see him next week for a hearing test and a ecog test. i'm at my wits end with the instability and really want to move forward. i definitely need to get a list of the dosages to take with me. he's pretty knowledgeable about all the research out there so i'm hoping maybe now that some time has passed, he'll consider it. i admit that scientifically i understand his hesitation. but on the other hand, like you said, this is a relatively harmless drug, why not try it before anything destructive?

 

Funshine and Jordan Thank you for the doctor's names. I just wanted to have them to take to my dr when I go see her next.

 

My GP prescribed me Acyclovir yesterday, so it is too early to see if it works. I have my fingers crossed. He actually read through all the abstracts that I gave him, which I'm impressed with. Haven't had anything odd happen in the first 24hrs though.

 

Razorfish, 24 hours is way too soon! I know you want relief, but even with the Acyclovir, relief can wax and wane over time. I hope you have prescription for an extended period and at a sufficient dose. I would also suggest you start the L-Lysine as well at the dose recommended by JOH at 3,000 mgs a day without food. In fact, the full JOH is your best bet due to the many components in John's regimine which will support your immune function.
Stick with a low sodium diet, it can't hurt, eliminate the caffiene and stay away from chemicals in processed foods.
All out war my friend. Hang in there!

 

FWIW, the first 2 days on acyclovir I had no change, day three hearing worse, days 4 and 5 glimmers of hope and from then on a zigzag path to steady improvement. Remember, damage has been done. The antiviral can only stop the virus at this point and allow your body to start healing. Think of mono.

 

Hi Funshine (cool name BTW ). You're right--I wasn't expecting anything really. It would be cool to have June's experience though after a few days! I'm on 400 mg, 5x/day. Does that sound right?

I'm waiting for JOH's stuff to get delivered. Off booze for 2.5 mos, caffeine for 1 month and pretty low sodium for a month. All out war is right!

The GP only had only a 2 week supply, but we'll review after that he said. Crazy--acyclovir is apparently £10 for a 2 week dosage over here but Famvir is £400!

 

Razorfish, Famvir is quite pricey in US as well...the dose sounds right and you are right on track! Stay the course...and hopefully, soon, you will be posting your own success story!

 

I took the generic famvir (US). My insurance covered it. But acyclovir worked fine for me too.