Saw Dr. Gacek today!

What a nice man! He explained his viral theory to me, and told me that he has done nerve sections and other surgeries on patients and had found evidence of viral activity in every one! He feels that a virus (many different kinds that can enter through the mouth and nose) can lie dormant in the body for years, until a traumatic event (physical, mental, physiological) causes the virus to come out of dormancy. He said that my Lyme tick bite may have been what brought my MM back to life (reawakened a virus).

Given my history, and that I have such a badly affected left ear, he has put me on Valtrex for three weeks to see is I see any changes in vertigo. Unfortunately, it cannot help the tinnitus and hearing loss (I've been sick too long for any reversals in that ear to occur, but who knows....) If I have positive results, he will put me on a maintenance dose to help keep my other ear safe. He also said because I've had gent shots, it may be hard to gauge whether it is working. Since I still have dizzyness, I think I will notice a change if there is one, though.

So that's it in a nutshell. I was very impressed with his kindness and knowledge. I am cautiously optomistic - I 've had so many let downs from so many other things I've tried (like all of you)... so I'll keep you posted.

Carol

 

Thanks for sharing this info. I emailed Dr. Gacek to see if he knew a dr. in my area who would be open to trying the ant-viral meds and he got back to me the next day. Unfortunately, he doesn't know anyone here but he gave me his protocol so i'm going to take it to my primary provider.
Did he do any other tests?

 

I hope it works for you, Carol!

 

Thanks, me too ! He did not do any other tests - I recently had a VEMP and a hearing test w/ Dr. Rauch and had those results with me. He wants to do an ENG next time, and wanted to put ice water in my ear today but I said no thanks to that - maybe next time. I just was not up to induced dizzyness today.

 

Carol - Great news, I hope the Valtrex does the trick. Too funny you said "no thanks" to the cold water in ear. That was my answer last 2x time offered that test. Turns out I never needed it now they found my problem.

I fully believe in viral cause in Menieres. I took Valtrex for a few weeks awhile ago. I have it ready incase for future.

I think it's great these doctors are emailing. I had a doctor in same office email me about my diagosis and what he thought.

Thanks for the update!

Mya

 

Carol ~

Wow, a doctor that is actually doing something about this, how rare and how lucky for you.

Could you pm me with his information? I would like to contact him and take in his recommended protocol to my primary, that is if he will do this without meeting me.

I think your approach of taking this with "cautiously optomistic attitude" is wise. I am very interested in hearing the results.

Sparrow

 

Hi Carol,

I'm so glad you went to see Dr. Gacek. My husband also was seeing Dr. Rauch and then a year ago or so we found out, through this site, about Dr. Gacek. My husband, Jim, started taking Valtrex 5-6 months ago (while he was having vertigo attacks) and 2 days into the high dosage they stopped and he has felt fine since (knock on wood). Jim had also tried acyclovir with not a lot of success. Dr. Gacek is so nice and never seems as if he is in a rush. He takes time to answer any and all questions. I hope Valtrex is the key for you too!

Julie

 

Carol,

I am so excited for you!!! I SURE hope that the antiviral meds will be an answer for you as they seem to be for my husband, and many others here.

Keep us posted!!!

Laura

P.S. I've never met Dr. Gacek in person, but he was SO HELPFUL and personable via email conversations, that I could tell he was a rare find!!!

 

Yes can you post his protocol? I have not tried antivirals yet b/c current doc says they don't help. But nothing else is either so I don't see the harm in trying.

 

Good luck, Carol. Lisa

 

Thanks for all your kind words and wishes - I hope you all have the same success you wish for me...

I told Dr. Gacek that he is a "hero" of sorts among some MM forum users, and he just laughed and said he doesn't even know how to get on the internet. I also asked him about his opinion regarding which meds stop a vertigo attack best. Do you know what he said? He said (modestly) he has very little knowledge in that area because most of the people he treats don't get vertigo any more. Well - I wanted to hug him then! Hope is a beautiful thing....

Several people have asked for his protocol. He has me on 1 gram Valtrex 3 times a day for 20 days. If there is improvement, he will taper me down to a smaller dose, most likely for an extended period.

 

Interesting Carol - My PC prescribed 500mg of Valtrex, once a day (one big blue pill). I'm not sure how that differs vs 1 gram 3x a day (dummy when comes to grams and things ;D). Does anyone know, i'm real interested in the amounts here. ??? I do know that if a herps starts on my lip and I take just one, it's gone.

Thanks -

Mya

 

1 gram = 1,000 mgs

 

Thank you Linda!

 

Dr. Gacek did say he was putting me on a strong dosage because my MM is so bad in my left ear, and the VEMP showed possible beginnnings of right ear involvement. He'll taper it off after the initial 20 days.

 

What good news! I am glad to see Dr. & Dr. Gacek gaining support among the "Meniere's" folk. I have never met Dr. Gacek's but have read and studied their book and loaned it to many of my doctors who have now been converted. I learned of Dr. Gacek over 4 years ago from my Neuro-otologist that admires the work the Dr.'s Gacek have done. Two points ... the VEMP detects Endolymphatic Hydrops not Meniere's. Meniere's is a label given for Idiopathic Endolymphatic Hydrops by symptoms. The diagnosis is correctly IEH said to be Meniere's. Dr. Gacek also uses MD to abbreviate Meniere's disease, not mm.

I remember when I first mentioned Dr. Gacek on this site and got slammed and insulted, it is so good to see testimonials from folks seeing him as their doctor. Does anyone have his current email? I assume you speak of Richard as I think Mark is still in Alabama, but could be wrong on that. I have lots of inquiry to the Dr.'s Gacek whereabouts and all I know is Mass. Would asppreciate a PM with more details....Thanks for this post...Sam

 

Dr. Gacek works at UMASS Medical center in Worcester MA. I'm going to see Dr. Lee who is also at same facility and specializes in SCSD/Tullio which I just got diagnosed. He emailed me and me with some advice and I quickly made an apt. He will do a VEMP test the day I go, it will be my first one. Check out Dr. Lee while you search, pretty smart man and very nice to email personally.

I too don't care for MM, never understood why that is used on forum. ???

The following site will get you to Dr. Gacek and company. I posted his bio from the site:


www.umassmemorial.org


Richard R Gacek, M.D.



Specialty Otolaryngology Adult
Head and Neck Surgery
Ear Nose&Throat-Otolaryngology


Clinical Interest Balance Disorders
Hearing Loss
Ear Tumors

Practice Location 55 Lake Avenue North
Otolaryngology
Worcester MA 01655
Patient Appointments (508) 856-4162
Primary Hospital UMass Memorial Medical Center
Board Certification American Board of Otolaryngology

UMass Medical School Appointment Professor
Medical Degree State University of New York, Buffalo 1956
Buffalo New York
Residency/Training Massachusetts Eye and Ear Infirmary
Henry Ford Hospital - Detroit

 

MM is used because MD stands for muscular dystrophy and medical doctor.

Morbus Meniere's is either German or Latin for Meniere's Disease.

It's just easier to type MM than Meniere's.

 

I just emailed Dr. Gacek on Wednesday and he replied the following day. I got this email address from someone else on the forum here.
[email protected]
I was really surprised to get a response so quickly. I'm confused on where he is because Alabama comes up on the internet but others say he's in MASS. Carolanne, where did you go to visit him?

 

I saw him at the UMass Medical Center in Worcester.

Boy will he be surprised when he is overwhelmed with emails.....

I guess then he'll believe what I said about him being a "hero"....