My conversation with Dr. Gacek

going to small doses throughout the day and upping my dosage seems to be helping me i take 400mg every 2 and a half hrs from 8 till 8 i set out a pill and take it during the night when i go to the bathroom the jury is still out but i'm feeling better; will never be the same after 24 yrs but i'm very excited about my progress have good days and bad but my quality of life is much better good luck and God bless

 

So glad you are feeling better! From posts I've read on the forums, the dosage of AV's that work for people vary.

 

With acyclovir, as opposed to the other antivirals, it is very important to spread the dosage throughout the day. I took mine 5 times a day.

 

angrychicken - Can you provide a time line

Hey angry chicken, I have not seen where you are today. Can you please provide a time line of events when they happened and any progression or remission you have today. Just looking for bullet points to all the info you have provided to date. Time MM started, your AV test. Seeing Dr. Gacek. Taking AV. Results. Where you are today.

I have a follow up appointment with my EMT Feb 18th who put me on a diuretic and low sodium diet which is doing nothing for me yet (don't expect them to either). I have the same symptoms as you except I don't have the numb face. At this time I still have pretty good hearing (loss wise) and want to stop this before I lose any further hearing and maybe get some back as you have.

I want to gather as much info about the antiviral treatment path and then present my "case" (I feel like a lawyer going to trial) to see if he will put me on this line of treatment. Otherwise I will be setting up an appointment with Dr. Gacek and driving from Michigan to Mass to see him. 12 hours is worth it if this works.

Thanks in advance.

Matt

 

Hi Matt, you may consider also printing out the studies in the database that support a viral theory and Dr Gacek's research:

A Perspective on Recurrent Vertigo
http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf

 

Hi Matt,

My history pre-Dr. Gacek can be found in my introductory post. Here is the link:

http://www.menieres.org/forum/index.php/topic,37313.msg766746.html#msg766746

After I went to Dr. Gacek he put me on his full dose regimen of valcyclovir. I had a crazy up and down experience for the next 9 days - my symptoms changed dramatically. The tone and volume of my Tinnitus changed. I had randomly fluctuating hearing loss where before my attacks had been very regular in nature and duration. Nine days after I started the anti-virals I woke up completely clear. Other than some very mild occasional pressure in my ear I haven't had any symptoms since. My hearing tested as normal in early December.

What you want is:

3000mg valcyclovir / day for 21 days (if improvement)
2000mg valcyclovir / day for 21 days
3000mg valcyclovir / day ongoing

Good luck!

Kind Regards,

Colin

 

Thanks. I will print and take to ENT. God I hope he is receptive to this. If not, I will check out Michigan Ear Institute in southern Detroit an maybe I can get assistance there.

Thanks Vicki

 

Seems a lot of folks can convince their GP to do it. ..might just go see him or her and take some documentation with you. ..

 

Or, better yet, get the documents to the doc's office a few days before the appointment, so she can read, ponder, and check the info. No time for any of this at a quick appointment. The doc will just dismiss it.

--John of Ohio

 

Does he prescribe it just for hearing loss and dizziness--when you no longer have the vertigo?
Or is it specifically prescribed for those who are in the 'grip' of ongoing vertigo?
Wouldn't want to take anti-virals, if it's primarily for vertigo control (mine is under control since the shunt insertion almost 2 years ago) if my dizziness and hearing loss that is 'stationary' now--no more loss, just about 30% hearing left in one ear. Wear aids in both ears and have 70% in the other ear but better with an aid. But if the antivirals can 'restore' hearing and ease dizziness/ tinnitus (the tinnitus is tolerable), then It's worth considering. Just wondering?

 

I'm curious about this as well. I'm bilateral, but I haven't had severe vertigo in many years (thankfully). I do still suffer from tinnitus, fullness, fluctuating hearing loss, etc. Currently, I've lost about 50% on my right side and 30% on my left.

Would AVs possibly help?

 

Dr. Gacek's AV therapy is aimed at the root cause of the disease - vertigo is just one of the symptoms. In many people the root cause seems to be the herpes virus. I have never had vertigo and AVs have been nothing short of a miracle for me.

 

Thanks, angrychicken. I received a steroid shot recently, so I'll ride this out for a while, but I might make a trip up to Boston/Worcester down the road if things should take a turn for the worse.

I love my doctor here in Houston, but he hasn't been very open to the idea of AVs.

 

I have sent him 3 emails (one today after reading your post). So far no reply's. Sure hoping to hear from him advising me on the possibility of seeing someone closer to my area and if he thinks that though I don't have vertigo anymore, the anti-viral meds would help with the awful head pressure and dizziness I deal with daily. Hopefully he'll answer at least part of my email.

 

GLA,

There are actually 2 Dr. Gaceks. The elder (Richard) practices in Worcester MA, the younger (Mark) practices in Mobile AL. Both are experts in the viral theory of Meniere's and both have very good reputations on this forum. Mobile is only a 6ish hour drive from Houston.

 

units but grams!

 

Hi yanksgirl,

1000mg (milligram) = 1g (gram), so yes they are the same thing. He wrote my perscription in grams as well. Best of luck!

Colin

 

Again, Thanks Colin! I will let you know how this all turns out for me!

 

yanksgirl I am so happy he did answer your email wonderful news! Good luck and keep us all posted.

 

Will do! I plan to send a letter along with his email to my primary and 'go from there'! We'll see!!!